Imagine being a drug addict before you are born?

Imagine you are a tiny baby forming in the womb and you don’t get to make choices about what your life is going to be like daily.

One day you are high on crack, the next you are drunk, the next you are on meth.

Then your womb ends up in jail and you go through withdrawal before you have even seen life. You suffer through that for a while and then after some time, you are back on those drugs again.

You hear terrible stuff because your womb is a prostitute. You hear bad men. Your womb hates you and doesn’t ever talk loving to you. You feel rejection before you even experience life.

Life hurts in this womb every day. You are not loved and you are a drug addict already.

Then you are born into this world and the only bit of coziness you knew is gone and you are placed with a stranger.

This stranger starts to give you love, but that is so foreign to you that you don’t even understand it. You are still in pain because you no longer have your daily drugs.

Your brain is totally injured due to the alcohol, and you can’t process this world like normal.

So now this stranger loves you, but you are numb and still in pain and it is hard to feel anything for a while.

When you finally heal from being numb and in pain of withdrawal, then you are afraid.

You are afraid because the only life you have known from the beginning of your creation has been painful or drugged up. When drugged up, you didn’t experience feelings, so now you don’t know how to experience all this stimulation.

You are easily over stimulated which creates more pain for you. So you learn to protect yourself from everything in life the best you can, because all you know about life, is it hurts.

You reject others because the only people you have ever known rejected you.

You can’t react to stuff like normal kids because all this inner turmoil and emotional upheaval in your brain keeps you in this melt down feeling.

Your body stays in fight or flight all the time and the stress hormones are eating up your brain chemistry causing you depression. But no one sees it. No one understands it and they expect you to be happy, because they love you.

This is how my daughter started. She has FASD and Borderline Personality Disorder, which is the adult name for RAD or Reactive Attachment Disorder.

She is actually amazing, considering all that she has to deal with in her brain.

She stresses me to the max at times, but in reality, she can’t help it.

I just felt like writing this because many of you have kids whom don’t make sense. This type of start is why. It has to be awful.

Lord you saw my daughter’s beginnings and you had your hand on her from the start. Please help her heal in her life and learn to trust and feel safe.  Help her to relax and mend her frazzled mind.  Teach her about LOVE which is WHO YOU ARE! Thank you!

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I have been the hated, I have been the loved. But I just want to be……….

I think adopting children with special needs puts you in a place that is kind of bipolar.  People frequently either judge you, or they almost worship you and think you are greater then you really are.

 I never wanted either of those.  I just wanted to be treated normal.  But raising my kids up to adults often brought both pictures to light in my life.

 I was looked at often as the mom who was over protective, over bearing, seeing too much into the situation, and downright helicopter mom. I was treated rudely often by professionals who didn’t understand my kids and thought I was the one with the problems. Not that I don’t have any, because I sure do, but it was so hard to get them to understand I was trying to help my kids.

 Then of course my kids didn’t like me alot of the time because it is common for a mom to be in that position. It made me feel like the world might collapse on me between the outsiders that judged me and my own kids anger. Here I was in the middle just honestly trying to do the right things for my kids and the crowds were pressing in on me. I could not stop to please any of them though.

 Then there were those that admired me way more then I deserved to be admired. The “Wow you did an awesome thing” people. No I didn’t do an awesome thing and people can’t you see I am human and I just followed God’s leading and I make a lot of mistakes in this?  So while that might feel flattering for a moment, it doesn’t hold up in the day to day world of raising up kids with special needs.

 What I needed more then anything were those people who would let me vent now and then, and know that I wasn’t a bad person if I was frustrated or angry. I needed people who stood by me when I made mistakes and loved me no matter what I did wrong. As I walked through this crazy forest of trees where there was no real path, trying to figure out what was best for my kids along the way, and not always feeling total security in my steps, i needed some of the people on the side lines to say “Hey you are doing your best and I love you for that.”  Not that I am a saint, nor that I am the evil one either. Just let me be me. Just walk with me and learn with me. Just listen to me and not judge me when I am down. Don’t tell me “God must not be in this for you to have this may problems.”  What does that have to do with this? God doesn’t make anyone’s life down here perfect and yes He was in this. He sent every child to my home and not one was a mistake.

  Yes I went through these things. They really happened to me. When I had a bad day once when my children were little, someone actually asked me “Well then why did you take all these children then?”  I learned to keep things to myself. I learned that I wasn’t allowed to feel overwhelmed or unable ever. 

  Then I began to understand what some of my children were dealing with and learning how to help them. I got  very over zealous in trying to educate the world about FASD and what my children were struggling with. That landed me in all sorts of troubles.  There were those that thought surely I was looking for issues under every bush in my child’s life. There were those that thought I was way over protective of my kids etc. And one counselor actually lit right into me one day and informed me that “I was my child’s problem”.  

 Well gosh, my child thought the same. I had to stand alone for many years until my child learned about herself and realized herself what she was dealing with; I had to wait until she “owned” her own issues. 

  Now that they are raised, I no longer run across much of the “you are a saint” stuff and I don’t get accused either.  Now I am in the shadows and watching my children fly. I am still under girding them when needed, but it doesn’t bring a lot of attention to me publicly, so I am just a regular person these days. It is kind of nice.

 I have realized what probably people in stardom deal with. It is probably a lot of the same and it is hard for them to have regular friends and not “Fans” or “haters”.  

  I don’t want to be in the limelight  that way. I now just want to settle into life and help others along the way that need that person who walks beside them and knows they are not a saint or a sinner. But just a struggling parent who needs someone to be strong and stay by their side without judgement.

 Thank you Lord for making me strong in this walk. It was worth it.  

How to survive FASD through their teens. TOOLS!

 

This topic is for encouraging parents that are in the thick of it.
Today I want to discuss “Tools for survival”

Some parents raising teens with FASD feel like they are going to com bust from the stress.
I was once that parent. I use to wonder if my body parts might land on the wall one day.
I told God numerous times that He picked the wrong girl for this job.
And yet now that we made it through that tough time, I am so glad they are my kids. I have gotten to see the beauty from the ashes.

My tools were these:
I had to talk to someone. I had to vent. But once I vented, I didn’t hang onto the negative. I moved forward to something that I enjoyed and tried to relax. I had hobbies that I kept going all the time. I kept my mind on what I would be doing for fun.
I didn’t dwell on how bad it was. I couldn’t. I would have collapsed. I took it one minute at a time, sometimes. I knew if I made it through this minute that I could live.

I prayed alot. I learned not to complain. Honestly complaining too much brought me down. I kept alot to myself because others would not understand. I didn’t need their negative understanding on me.

I learned to fight. To advocate for my kids. I became their best advocate and I faced the goliath of teachers and principals but with SMART HONEY. What that means is I came in prepared with my stuff and knowledge but I fed it to them in a kind manner. I learned not to be the mother bear who was ready to attack. I learned to be the loving, caring parent who knew absolutely what she was talking about and stood my ground in as kind a manner as possible.
This took years for me to learn. I faced many heart aches and set backs from teachers, for years, before I figured out that they listen better if you treat them with kindness. but run them over with knowledge and confidence.
With my kids I learned not to engage. I learned to protect myself and get away. I honestly learned not to yell back at them and that took a long time too. But it only stressed me out more if I did and I never won with them. I only incited them to react more. I have to state that I am still working on this. 🙂
I learned to state the rules and stand by them. I used to be a wimpy mom who would say something and not follow through. I got tough and when I did, they pushed me less. I followed through. I learned not to open my mouth unless I meant what I said.
THis gave me a sense of management and accomplishment because I didn’t feel so defeated by my kids. It takes strength to do this with kids that have FASD. But I learned with these kids that if you give them an inch, they take a mile. They are so manipulative in many ways.

You don’t have to be a mean mom to be a firm mom. I believed in consequences and I used them. But they were not abuse. They were teaching lessons. I never used consequences when my kid was angry or raging. It was after the storm was over. I should not say never. But I learned that if I did, it only escalated the situation.

These were my tools for survival as a mom of children with FASD.

I could never allow myself to just cry over it daily. It would have buried me. I learned positive ways to fight and stay alive.
Sometimes I have no support at all but God. I even had some very serious health problems in the middle of it all, but I still fought to stay upright.

I want to help others stay afloat.  We can’t give up. We do need to support each other, but we can’t just continue to be falling apart. We have to grab some tools and find what works for each of us and how to stay in the ship.

I have made it through so much. I raised my nine, lost one son to death, had serious health problems, almost died myself many times, have had depression, anxiety, and I had migraines for years that were daily, financial hits that were serious and more. I have learned that I can still be an over comer in all things.
I try to keep the fun in life even in the midst of the pain.

Thank you Lord for keeping me. Today my kids are 20 and 22 and the hard stuff has lessened alot, but they still need my guidance and external brain support.  There are still some outbursts. I am still working with all the same tools.

it isn’t easy still, but God has sustained me and I expect Him to continue.

Ministry from Desi, Why kids with FASD steal

 

Parents are wondering why their kids steal and Desi and I had a nice long conversation today about this. I thought it was very insightful. So I am sharing her words to help you.

This is a message from my daughter Desi. I am going to type out her own words entirely. I will prompt her some with questions.

Mom: Did you think stealing was wrong even when you young?

Desi: Absolutely. You guys taught us from a very young age the basics that taking things from others was wrong, so I knew it was wrong.
But I was always thinking solely about what I wanted and didn’t think of others feelings. Just like normal people, I always knew it was wrong, but I saw something and just took it and then the guilt and the anxiety would set in about getting caught and what I did.

Mom: so you feel this was more of an impulsive act that you did without thinking of the consequences first or before you did it.

Desi: absolutely.

Mom: You didn’t take things outside the home because you feared the law.

Desi: Yes I didn’t look at it as serious, taking from the family. Either way I knew it was wrong, but I didn’t think before I did it. If i did think about anything, it was about simply what I wanted and I didn’t dare ask you for it, as I feared I would be told no. It is tied into the fear of rejection and I would feel ashamed, get embarrassed and angry when I was rejected.

Mom: Do you think getting consequences harmed you?

Desi: Maybe at the time, but looking back as an adult now when your parents instill the fear of God in you it definitely puts perspective on it. It eventually sticks. I don’t look at it as punishment.
When you are punishing someone, I feel it is negative.
When it comes to people with FASD, if told you are going to punish them, that is a negative word. You have to put it into a perspective that is not negative. Put it into a lesson that is called consequences, but not punishment. It needs to be more of a lesson that teaches, but the consequence has to hurt a bit to teach. It will stick eventually. It did with me as I matured.
Consistency is something that I feel people with FASD need. It will stick. It did with me.

Mom: How do you handle the impulse control today.

Desi: Honestly I kind of grew out of it. I now understand what others feel when their things are taken as if my stuff was taken, I would be furious.

When I worked at the thrift store there was a man who was a pathological liar. He stole money out of my purse and I knew it.
I was livid and wanted to punch in his throat. I was so mad.
Being the one that always took from people, very rarely did anyone ever take from me.
That is sad. I was over here taking things from other people, but they were not being taken from me.

Mom: so the thrift store lesson taught you something?

Desi, no I stopped long before that, but personally feeling that, I know now it is terrible.

Mom: So why do you think you took things?

Desi: because I was too scared to ask for it and that huge fear of being told no and that fear of rejection, and also because I wanted something.

Why young adults with FASD struggle on jobs

Reasons why young adults with FASD struggle to hold onto a job:

• Processing:  Most bosses expect our kids to “hear” at the rate that they themselves are able to hear. Often that is not the case. You cannot tell my daughter three things in a row and expect her to remember them all. or hear all that was told to her.

The brain of a child exposed to alcohol in the womb has blockades in it. Random cells have been killed while alcohol bathed the poor baby’s brain far longer than the mom who drank it. due to immature kidneys that cannot process it out. Alcohol kills cells.

Pour alcohol on an ant and you will kill it Imagine what it is doing in that baby’s brain that is supposed to be developing?  Soon you have dead areas all over that are like holes. They call it “Swiss Cheese Brain”. Then it collapse on itself and is smaller. Children with FAS often have smaller heads due to smaller brains.

The synapse that is naturally set to go from A to Z in the brain has to make new roads to make it. So when this child processes, it goes from A through b, c, d and E, before it can reach Z.

You have told her a group of things to do for the day and she heard the first one and is processing it when you stopped at the third. That third one hasn’t hit Z and you have walked away assuming your employee knows the plan and when she doesn’t do all that is asked, you think she doesn’t do a job well. That is not the case. She didn’t process. or remember all that you told her to do. These kids often need prompts and prompts to do the prompts. all day from an external brain. Most employers are not there to hold the hand of their employees.

Feeling overwhelmed trying to remember and process creates Anxiety. The more you pile on them, the more the anxiety mounts and the more the meltdown risks ensue. This also affects processing and memory further. Can you think straight when you are anxious?

Pace. They may keep up for a while but it stresses their brain to keep up a pace and soon they are in a melt down and one wonders why.

• Memory. Again, even if you write it down, she will forget the list. The cortex section of the brain houses memory. It is frequently injured in the brain, through alcohol exposure. Often these young people are like old people with Alzheimer’s. It is sad but their working memory is hit hard sometimes.  You have to tell and retell or they often forget. Imagine an employer being patient enough to do that with their employee?

Forgetting medications or inconsistency with taking meds. This leads to mood swings and break downs on days when little things will get to them because their bodies are often in withdrawal. I found pills in kid’s rooms frequently. They were tossed in drawers instead of down their throat. At almost 21, I have to give my daughter a text reminder to take her meds and sometimes still a repeat one to see if she did it when reminded. This can wreak havoc with a day at work if they are emotionally off kilter due to not taking their meds because they forgot.

• Motivation. There is actually a center in the brain of the frontal lobe that is called the motivation segment of the brain. Our kids are often considered lazy, but it has to be damage in that part of the brain. Too many of them have this in common. They are the ones who simply cannot occupy themselves. They often don’t know where to start on things so they just don’t.

• Thinking: Concrete, inability to think abstract, or solve problems, often very bad at math. My daughter cannot add two simple numbers in her head or subtract. Yes there are calculators but it is proof of her concrete thinking and inability to solve a problem.
  This causes them to freeze. They see a problem and can’t see their way around it. Their brains cannot sort out, solve OR sequence which is another one.

Which comes first, the chicken or the egg?  They don’t know where to start often. Sequencing requires abstract thinking. You start somewhere and you plan in your mind how you are going to get to the finish. These young adults can’t think that through. It requires too much processing and they get stuck. So they don’t start a project. Often things have to be prompted a step at a time for them to clearly reach the end.

• Time: Inability to manage time well. Always late. Don’t realize how fast a clock runs. Can’t manage how much time it takes to get ready for work. My son would get out of bed 15 minutes before he was due at work and then couldn’t find anything he needed for work. He could not foresee the issues that it would take for him to get ready and he had no clue how long it took for him to drive to work. Constant lateness gets people fired.

Living in the moment. Inability to see the future. They don’t remember the past often either. Every day is ground hogs day. Brain trauma causes this through memory, processing and inability to plan. .
This causes them to lose their train of thought about where they are supposed to be, talk too much with someone on the job. They often lose track of TIME. How fast does a clock go? Can you and I sometimes figure out if we have only a minute to spare?  They cannot. They are in that minute and they stay in that minute.

I am an artist. I can sit down and work on a project and hours can go by and it will seem like minutes. That is how their whole day can be. They are not tracking time. They are just here now and doing what has to be done here and now and not thinking ahead or keeping time on the clock.  This is in the frontal lobe where planning is supposed to take place. But they have road blocks in the planning section. So their plans are scattered and not organized.  They are here and now and that is about all they know often.

An employer might find his employee with FASD chatting with another employee and forgetting that they are supposed to be working. Or there is a certain amount of work that needs to be done in a day and that employee just can’t get it done. He or she can’t plan how to get it done. They may need prompts on the steps to the end and/or they may forget all the jobs handed to them that day, so they start on one job and take their time and oops, where did the time go? Time?  It takes planning to manage time and planning has been injured.

• Organization: Losing things. Yes. All the time. They can’t find their name pin, their hat, their shirt, their shoe, all required for work. Again due to lack of organization. This creates chaos in their rooms, apartments etc. They often look like the hoarders that we wonder how they can live in all that trash. They don’t know how to clean out the trash as that takes planning, processing, sequencing and memory.

• Hygiene: This has improved with my kids, however it is often common with kids in their teens and lower functioning children. Not brushing their teeth enough, showers or hair care. Hygiene also takes planning, motivation, memory and processing. They forget.

• Lack of impulse control:. Easy peasy. They do things without thinking it through because they don’t process well. They don’t remember. They don’t plan.

• Complete self-centeredness, they are often unable to see others have problems too therefore they don’t show compassion on their coworkers or their attitude may make others upset easily.

Sometimes they don’t get along well with others.  Many have attachment issues and PTSD and all sorts of mental diagnoses like Bipolar, depression and anxiety.

They are sensitive often about everything people say. Again this is concrete thinking, not able to process where others are really coming from and no impulse control and they jump to conclusions and once they have their mind made up that things are a certain way, it is hard to help them change it because anger takes out all processing. Then they can lose focus on work and start fights/arguments or possibly tell lies about someone to get them in trouble, as to get even. They cause triangulation on purpose due to their emotional instability.
They are often Insecure about themselves and a desire to make themselves look better than their coworkers and have jealousy etc. Emotions are often right on the surface of a person with a traumatic brain injury which is what FASD is.

• Lying:  Not admitting to making a mistake on the job, when probably the boss can see who is at fault. But our young adults lie for many reasons. Impulse control, protection, not processing through to the truth, etc.

• Stealing: OOPS, taking things from their place of business that don’t belong to them. Often this is rooted in the center of the brain that doesn’t recognize sense of ownership. Also they see it, want it, and take it. No impulse control. Not processing through to the why they are doing what they are doing.
  It can give them a high to get something new. A drug so to speak. AWE see it, want it, Oh that feels good, but not processing through that there is a consequence for doing it.

Not always learning from consequences. Yes they can learn but their brains take much longer than a normal brain does to “Get” things and for them to stick in their memory banks. Some kids are worse at this than others.

Inability to realize that they will have consequences  for their actions therefore losing jobs and not meaning to lose the job, just living in the moment, not remembering the danger of their crime, lying about having done it etc.

• Sensory issues. Last but not least I want to touch on the fact that many of our kids have sensory overload every day. Light and sound is louder and brighter to them and this overshadows their ability to function well, think clearly, stay focused and often triggers meltdowns.

Recap:  A traumatic brain injury is scattered and unpredictable where it lands. Often much is in the Frontal lobe.  It causes our young adults with FASD to struggle in many areas and some days can be worse than others.  Some days it seems that the brain is clicking along and others they are not remembering, processing, sequencing, planning, controlling impulses, and they are on over load from too much sensory and people.

It is a far more complex life for them and it takes most of their energy just to keep up with their brain. So adding in a job with lots of parts and pieces and expectations can be hard for some of them. Not impossible. My son is working part time as a cook and he has kept his job for two years.  I think there has to be a few pieces in place that can help. Doing the same things daily is a big one. Working with people who treat you with kindness and understand you and what you are dealing with helps.

An employer who doesn’t mind repeating himself throughout the day in a patient fashion.

An employer who “gets” being an external brain to the young adult with FASD will go a long ways toward success of that young adult’s ability to hold onto their job and become successful in life.

Shattered Dreams, Adjusting to the darkness

 

 This story is about my daughter, Desi. 

She is very articulate, got great grades in school until high school, is gorgeous so the boys want to know her. She has plans to work in criminal justice after school, which means college.

We all are behind her. Every one of us. We think she can do this. UNTIL she hit high school and began to decline year by year.

We didn’t know her issue to the full extent until she was a Freshman in high school. Somewhere along the way we discovered FASD.

Birth papers told the story already but we didn’t realize the damage that alcohol could do to a child. We knew she was born crack positive, already an addict at birth, but we didn’t know she had a brain injury that was about to rear it’s ugly head, big time.

My beautiful baby, landed in my arms at about three days old and she seemed so normal. The papers said crack addiction, but I had been praying for her. We noticed no withdrawal. In truth looking back, we think she was probably too sick to “speak”.

She writhed alot. She was wrestles, but she didn’t cry much. Was she already learning how to be tough and not allow the pain of this world get her? Was her brain injury such that she couldn’t even feel that pain?  All possibilities since kids with FASD often have a really high pain threshold.

My little girl was the apple of my eye. She was a blessing from God. She was an answered prayer.  She grew up and no one noticed anything wrong. She was emotionally labile frequently, but we had read crack babies were often emotionally fragile.

We thought she was smart, talented and had her whole world ahead of her. 

Every night after dinner my kids all had energy hour. Desi used to do acrobatics each evening. One night, I could not believe my eyes. She ran and flipped with no hands. AT TWO!!!  What the heck????  

We put her in gymnastics at age 5 and cheer leading at age 7. Our little one had talent! We needed to foster it.

The years went on and honestly Jon was the one that gave me the most cause for concern. He was having school issues, failing, and teachers that didn’t understand him. It was a long haul getting Jonny through school.  We suspected FASD, but we didn’t understand it well.  

 Desi went on in middle school to get the top grades in her class. She was doing so well and she was brokenhearted if she got a C.

We were sailing. Desi was just going to be, what she wanted to be. Everyone was proud of her and cheering her on.

All of a sudden in high school, the lights dimmed. Her grades began to  drop and she began to struggle. Behavior was showing up. She began cutting on her arms and life wasn’t high any more. 

She went through some counseling from Directions for Youth, and the counselor told me that my daughter had a mood disorder, and she needed professional help.

Thus began the decent into medication trials and failures. More cutting, grades dropping further, anxiety attacks at school, and on.

By her senior year she had an IEP and we understood FASD. We advocated for her in school and tried to get teachers to understand. However none of her teachers  really got it. She still looked so good and articulate. Surely there was nothing wrong, and I was an over protective mom.

Well when she almost failed her senior year and the IEP was failing her too, I went to school with her for a month to help her get caught up, so she could pass. This is when I truly began to get Desi’s disability. She failed every test she took. She failed due to memory issues.

She could not organize anything. She would do papers for teachers and lose them or forget to turn them in.  Her little dream was crumbling. How could she go to college and be in criminal justice, when she couldn’t pass a test, or be organized. She had no self motivation.  

 We were falling into the darkness. We could all feel it. Our Desi had some serious issues. She started with rages in high school too. This was horrible for all of us to deal with, and sometimes family members were in bodily danger.

Police were beginning to get involved in Desi’s life.  She ran out with knives one night and the police helicopter was out there looking for her.

We were spiraling down and the darkness was getting so thick that we almost felt blinded. How could we help our daughter? One day at a time, I would pray. Each situation presented new challenges to face and figure out.  Of course it wasn’t just Desi now, it was both Desi and Jon and this was really stressful for us parents.

 Now we are up to date. Desi is 19. She has now suffered the loss of her dream to go to college and be in criminal justice, but not only that dream, she had a simple job this year running a cash register and she lost that too, due to behavior on the job.

She makes friends really easily, but I honestly lost count of how many friends have rejected her, after they got to know her. When they found out that she can’t control her anger, they often just blocked her or stopped accepting her calls.  Rejection after rejection, over and over. I could not have handled that, and here my daughter is with a brain injury, and she is being required to handle this.

 Her whole life revolves around social stuff. She can’t stand to be alone, but she is now standing almost alone. No friends, even siblings are losing patience with her. 

 So she tells herself in her thoughts, one day I am going to have to die. I have no hope. I am a failure. I can’t manage my anger. I can’t keep a job. I can’t remember things that are important. I can’t even take care of myself. I AM A FAILURE!!!!!!

 The lights went out. Desi attempted suicide. Where once she could see, all her dreams crashed and now she feels blind. She is adjusting to a world that looks hopless to her and she doesn’t feel she has the tools to make it. She cannot see. In just a short few years she feels like she got a disability that is like going from sight to blindness.

 Now how does she cope? How can she get around? Who is going to be in her circle? Who will understand her? Who will guide her entire life?  She feels less then less.  She can do nothing about this and the very fact that she has a mood disorder while trying to adjust to this blindness compounds this totally.

 Where do we go from here?  

I think this is the hardest time for a kid with FASD to find out that their dreams are crashed and they are injured in the womb. They now have a very scary future ahead and don’t feel that they can make it on their own. or at all.

 Their very injury or disability pushes away all the ones that they need the most in their lives. Except her parents. Her parents are not leaving, but sadly her parents are the ones she blames right now. Her parents made her face her disability. Her parents are the ones who could handle her rages and anger and they are the only safe ones, so her parents get the brunt of it. They get to ride the roller coaster with her.

She is not only angry because her brain injury causes her to be, she is angry because she has lost her dream and is recognizing that she now has nothing left. Or so she feels that way, whether or not it is true.

Her parents don’t know if they can even hang in there forever either. It is wearing them out.  Where do we go from here?

One day at a time, God says and sometimes one minute at a time. It is all we have.

We need you God. We need miracles now. Desi needs another dream. One that she can reach. One that inspires her and brings her out of the darkness.

Send that dream God and send helper angels to bring her to that dream.

Send strength to her parents God. Send understanding to her siblings and friends. Send her some friends who will stick by her no matter what. We need you Lord.

We need a new dream to break out of this darkness and into the light once again. Hope! 

Thank you Lord, for we know YOU will not fail us!

Terry Quinn

http://www.parentingfasdkids.com

FASD can KILL? YES! And world, you better open your ears!

 

 

I have not posted in a while. Living the day to day survival with Deserai and losing my son Jake, has been about all I can handle.

Jake’s story is at: http://joyforjacob-gonetoosoon.blogspot.com/2013/12/leave-him-alone-he-is-my-baby.html

We have walked through fire after fire this year. I myself have had serious health problems and went through hell with stuff last summer. After that, I almost went deaf with an ear problem and it was pretty scary and horrendous! While dealing with being deaf, my son died.

The past two months have been pretty challenging with Desi. I will give you a quick summary. She has been in Netcare (emergency mental health facility) for a few weeks, for raging and threatening suicide. She then met a girl at the hospital that she tried living with and that turned out to be quite a scary adventure also.

She has been nothing short of a walking stick of dynamite,  since she lost her job.

She came home after the friend trauma. She was grateful for a few days to be home safe. Then it started all over again.  Challenge after challenge with her anger.

We are on home row with disability, waiting for court, and she lost her job in December all due to her inability to manage her anger.

Since losing her job, I am convinced that right now she cannot hold a job. She lost her job because of her anger and she triangulated the entire company.  Her boss, a friend of mine, could not take it any more. She did the work. I got her there on time, every work shift, but her emotional instability is beyond dangerous to herself and others.

After losing her job, was when things got worse, because she now had no resource for money and she has been feeling like a total failure.

So  now on to yesterday. I almost lost my daughter. She did a serious, no nonsense, suicide attempt, yesterday.

How can I explain to you in a calm manner what happened after just finding my son dead three months ago? I cannot. So bear with me.

We were doing housework together and we were laughing at pillow cases.  She asked for her next chore and I told her my room needed vacuuming. I am going to tell you this story from my side first and her side second.

I put the vacuum together and went down stairs to tell her. She was stretched out straight on her face, on the floor. I thought she was resting. I told her about the vacuum three times and she didn’t answer me. At that very moment I KNEW something was wrong. Fear gripped my soul. I had just seen this three months ago when I walked into Jake’s apartment and yelled at him and no answer.

I went over to her and pushed on her shoulder and called her name. Her eyes were going everywhere, but half open. IT WAS  FINDING MY SON ALL OVER AGAIN!!!!!!!!!!   I STARTED SCREAMING AT HER AND CALLING MIKE AT THE SAME TIME TO CALL 911.  I WAS YELLING OVER AND OVER!!!!!! DESI!!!!!!!!!!!!!!!!!!! DESI!!!!!!!!!!!!!  TALK TO ME!!!!!!!!!!

I was getting so frantic. At this point I thought maybe she was having a seizure. My son died from a seizure. DO YOU KNOW HOW MUCH THIS SCARED ME?????????  I was having a fit over how long it was taking the ambulance to get  there.  I started praying over her and just praying and praying and praying.  God you have to save my child. Lord wake her up. I prayed until the ambulance showed up and at that point I started to sob.  I was totally apart now.

I told them I thought  she was having a seizure. They said no, it looks like she took something. WHAT THE HELL??????????????

WHY????? What could she have taken?????  WHAT IS GOING ON???????????   WHY IS SHE DOING THIS?????

Oh Lord Jesus, I didn’t know if she was going to live or not. The med guys got her awake enough to tell them she took welbutrin, but she didn’t know how much.  I found the bottle but could not prove how much because I add new scripts into old scripts, when they arrive. That keeps the numbers of bottles down.

Desi whispered something to me. I asked her loudly WHAT?  She said “note”. She looked in the direction at where she had been laying.  My eyes traveled there too and sure enough, there was a crumpled piece of paper on the floor.

I picked it up and read it to every one. It was a suicide note.  She was sorry to everyone, but no reason why she did this.

So now we move into fast mode. We go to the emergency room. I am sobbing the whole way. Then I realize that the ambulance’s lights are not on and no sirene. So I ask the guy, is my daughter going to LIVE?  He said yes, this medication doesn’t kill people. It will make them sick for a while but not kill.

I know I asked this question before this, but didn’t believe them. But now I do. Now I want to kill my daughter for this!!!!!  I am like, you  sent me through Jake’s death all over again.  WHY????????  Flipping out here at the entire world who will not understand FASD and will not listen to me when I try to to educate and will not help my daughter get medications for her anger etc, because they THINK she can make choices on her own.

YOU ROTTEN PEOPLE! You are all ROTTEN CREEPS who won’t learn about FASD and because of that, I am living my son’s death all over again. I am blaming them all for what my daughter did.

I asked for some medications that would help calm her down at her last psych apt. and this wise ass doctor said no. She raised her antidepressant instead and spent the entire half hour telling Desi that she needed to start making better choices.

UM, YOU STUPID, STUPID lady! My daughter has bipolar and a brain that doesn’t process meds like normal people and you double her antidepressant which can send her into a manic episode, or make her suicidal, and you succeeded!!!!!! You crazy (can’t say it.)!!!!   You get it people??? FOR so many freakin years I have been trying to get understanding from people, for my daughter, and I have been ignored, yelled at, told that my daughter’s problems are ME, and more.

Well now you are all going to listen to me because I am not going through this in my life, EVER AGAIN!!!!!! Do you know what it is like to feel the body of your lifeless child?????????  Have you ever hugged your child;s stiff body?????

I have and it is the most devastating thing a parent can go through in this life, and once again I was pushing and moving a lifeless body!!!!!!!!  NOT ONE MORE FREAKIN TIME am I ever going through this again. If I have to spoon feed her doctors FASD and force them to swallow it, they are going to listen.

My daughter has a traumatic brain injury. She  is angry ALL the time. She didn’t choose this to happen to her, but it did and someone is going to find a medication that will help her calm down, so that her life can be saved.

My daughter is talented, smart, so much fun when she is not angry, but she has lost almost every friend in the world because she cannot manage her anger.

Listen up world. We cannot shove FASD under a rug any longer. It is killing our kids. It is jailing them. It is crippling them. It is leaving them helpless and struggling to live.

You don’t have a choice any more because I am not going to shut up and you can no longer hurt me with your accusations any more.  You can’t blame me. You can’t ignore this and you are going to help my child.

Last week my very vulnerable and naive daughter went to the home of two men. She thought she was going to live there happily. I knew different. I knew she was in danger. Sure enough the next day she showed back up at home with a story that blew my heart up. They had forced her at gun point and made her snort cocaine. Desi has NEVER touched a drug in her life, other then her medications.  This was very violating to her, because of her strong belief against drugs.

The next thing that happened was the older man tried to rape her.  Enough of that story. She got away and was not raped. Of course this was a big part of what all fell into place yesterday when she tried to take her life.

Now on to Desi’s side.:

I came home to my mom’s but I didn’t want to be there. I am not really happy anywhere, but I feel like a total failure to my family and myself, right now. I lost my job and I can’t work because mom is trying to get disability for me.

I have no money to help myself with anything. (her hair is falling out from using glue and hair weave, this is hurting her heart greatly).

That morning, I decided to leave home again. I packed two bags, but sat down and realized. I have no where to go.

I have been telling myself for months now that one day I am going to take my life. I can’t live with this failure and this anger.  I have hurt so many people and lost so many friends.  I am alone with my pain.

I have to kill myself to get away from this pain. There is no other way.

So after I realized I had no where to go, I decided today was the day. I would do it. I took lots of welbutrin (Desi has no understanding of what drugs can kill and what can’t).

Then I just did my work, waiting for it to happen.  I was upstairs with my mom doing pillow cases when I felt it happening.  So I went downstairs, grabbed my note, shut my phone off and laid on the floor. I knew I was going to be dying now.

When mom came to me, I could hear her some and some not. I was in and out.  But even though I could talk some, I didn’t want her to know what I did. I just wanted it to happen. I wanted to die.

Back to MOM.  Watch out world. Desi is going to get help now,  and you haven’t heard the last of us yet. LISTEN!

FASD is serious!

Today Desi is able to talk. She is still very shaky, but she has her mind. She knows that she needs help medically for her anger.

I had asked her psych last week for Clonidine to help her calm down and got told no. She said she had to try the antidepressant first. Desi said today: “I bet I get it now mom!” OMG! I laughed. I bet she does!

Lord Jesus thank you so much for keeping my daughter for me. Your angels are strong. I have always asked for the strongest ones for Desi and you gave them to me.

Don’t let them ever leave her and please Lord, Use a mallet over the head of people who need to listen. Thank you.

Thank you so much that I did not lose  my Desi. I love her so much and I love you Lord. You are Awesome!

http://www.parentingfasdkids.com

If you are going to be an external brain, you better be DARN GOOD!

 

 

My goodness! It is difficult at best lately to keep up with my own life.

I am 58, have raised nine children and deal with some health issues.

But I am responsible for four people really. Well my hubby is included in that too, but I don’t do his job for him. lol.

I just keep his appointments and manage his money.

 I do all that for Jon and Desi also.

Well Desi has a free psychiatrist that she currently sees, as she has no insurance. We are forever grateful that we have this doctor.  However it requires that she goes to two counseling appointments per month to see the doctor.

So this adds up to three doctors apts. per month just to keep her meds.  

In the beginning we got things mixed up and she got kicked out of the practice because she was a no show for an appointment.

In an amazing miracle, we got things straight and got back in.

Well her next appointment was today. She rarely works days so I didn’t tell her job about her appointments.

BIG GOOF on my part!  She got scheduled for work today. So I had to call and reschedule her councilor apt.  

UM, not giving 24 hours notice is a  SECOND NO SHOW!

THREE STRIKES AND YOU ARE OUT!

This is my daughter’s psychiatrist and the meds that keep her ALIVE!

My mistake and not Desi’s, as Desi can’t manage any of this.  WOW I dropped the ball. Now she only has one strike left and BOOM!

I rather hate walking on thin ice like that.  No more mistake room for ME!

You better believe that I will be giving her appointments to her job from now on.

But here is what got me the worst. I told this man that my almost 19 year old daughter has Fetal Alcohol Syndrome and severe memory issues.  I asked if there was ANY grace?

He said, well she manages a schedule to go to work, she can manage this.

NO NO NO! She doesn’t manage a schedule to go to work!  I DO!  I write her schedule, on MY calendar, and I get her up in time to go to work. I DO IT!

  I told him, this is MY FAULT.  He didn’t believe me.

I hung up once again with that heavy feeling of heart that others don’t understand my daughter.  It hurts me every time I run into that. I guess the real deal here  is that I have to become the “someone” who GETS the rest of the world. I need to “GET” that the world doesn’t understand my kids.

I need to GET THEM and my children.  

Sigh………

Oh Lord give me a strong heart  to be “not understood” for however long it takes in this world.

Help me be the DARN BEST external brain that my kids need.

You are  “MY” external brain God.  You and my Ipad, lol.

So please don’t let me mess up?  My daughter’s life depends on it!

 

Terry Quinn

kidznlildogz@aol.com

http://www.parentingfasdkids.com

 

Being an external brain wasn’t the career I envisioned?

 

 

Today is one of those days of frustration in the  capacity of my unpaid, usually unappreciated, JOB TITLE, EXTERIOR BRAIN!

Now I know that God has this plan for my life, and I know that there are huge blessings in my life, so I really don’t have the right to complain to God about my life. Do I?

Oh gosh, sometimes I just feel the need to vent out my pain and then I am able to let it go. It is healing. So here I am sitting here with my vent!

Our adult kids with FASD have to have interdependence to make their lives successful. How much interdependence is something that many of us are still sorting out.

Here is what I find so far, though. My 18 year old daughter is absolutely incapable of organizing her life on her own.  Now honestly, I do this daily, prompt her all day long, and most of the time it is rather like normal. I mean if you have a job to do, it might feel boring, but you just do the job and do it with your mind in some other peaceful place, so you don’t get all stressed about it.

I mean how many of you are thinking about fun times while cleaning your house? Or on your job daily etc.?  Your mind can take you to another place and your job just gets done.  Maybe this is a type of multitasking. Either way, it works. I get through every day with the mundane task of prompting my daughter through her day.

Sometimes we have fun. Sometimes we are joking with each other and it is fun.

I an naturally so organized, so I have to help Desi stay as organized and clean as possible, while she lives here.  She likely will be living with us until she is married one day.  I don’t see that happening for a long time, as relationships are hard for her. 

Well today I got just a little frustrated with my job task. I got Desi up at 12:30. That should be  enough sleep for most of us, right?

I informed her that she didn’t do the dishes yesterday, which is her only main chore in this family, other then her own messes, and her room. I casually stated that she needed to get up and get the dishes done.

Ok this was 12:30.  I have prompted her many times since 12:30 and it is now after 6 PM, and the job is just NOW done!!

I mean at 12:30 she got up, spent an hour or two eating and watching TV. Ok, I know she needs her blood sugar, so that is ok.

 2;30 Still no dishes. I see that and prompt again.  Some time in the afternoon she starts the dishes. Then she thinks she is done.

I come down and pans are piled to the cupboards on the counter. The counters are not cleaned off. Food in the strainer, more dirty dishes from her lunch are on the table, food is out all over etc.

Desi, you need to finish the job! I go into her room and my young lady is back in bed ASLEEP and it is after 3 now.

Didn’t I get her up at 12:30 to do this?

I wake her up again, and instruct her on what she didn’t finish.  I leave and come back hours  later, and she is in her room. I am now a bit flustered. DESI THE DISHES!

She says she is cleaning her room. RIGHT! I go check the room and it still has two feet of clothes everywhere and food trash mixed in.

So this time I stay down stairs until I “eyeball” her at the dish counter to put the pans away.

Then I wring out a dish cloth and hand it to her to wipe off the counters.

Then I point out the food and watch that she gets that put away too.

By now  it is about 6 in the evening, and this started many hours earlier. Also the entire time I am standing there watching her finish the process, she stops repeatedly to text her friends! PATIENCE TERRY!

The only way this girl can have success is if I stand there and watch her.  If I do that, I feel like I could do the process faster and better myself, so it wears me out to watch her. So I prompt her, go away and forget what is going on and come back and have to drag her back to the process and prompt her again.

I am still in this job that doesn’t pay me one cent per hour and I can’t quit. The boss can’t change the employees, as I am the only one qualified for the job.  I can’t get myself fired because if no one does this job, it is not just my daughter who suffers, but I will too.

I have to manage all of her doctors appointments, counseling, psychiatrists, medications, financials, emotional needs, chores, and much much more in her life.  This is only something that I can do “ONE DAY AT A TIME”!

I am guessing someone reading this is thinking, OH girl, you have it easy. I have  etc. etc. etc.!!

Yes I do, but I raised kids for 33 years and I didn’t realize I wasn’t going to have an ending.  Now I do of course.

It is something that I need to get over and get used to. Being an external brain could potentially be for life with my children.

I am very much involved with Jon too, but he is not living at my house. I manage his money and help him with appointments, groceries, and lots of little things,  etc.

I don’t live with him though and I don’t have to look at how he lives daily. PRAISE GOD FOR THAT! One is enough for me.

Now after raising nine kids, raising one has it’s perks for real. There is no competition and Desi gets all of my daily love and attention. That part is rather awesome!

One day at a time, I am still a parent and one day at a time we will get through.

Prompting Desi in life is my job, as her external brain.

Lord give me grace and strength to keep up this job and do a darn good job at it!! Thank you LORD!

Terry Quinn

kidznlildogz@aol.com

Join us on Facebook at:  https://www.facebook.com/groups/ParentingFASDkids/

My world has to be just right!

 

 

I have been pondering this all day. Desi has a pretty serious issue with things in her world not being A-OK, all the time. I mean even little things that are not right. She feels the need to set things right and will obsessively text someone until she gets the answer she wants to hear.

I have been wondering, “how can I help her?”

She is pushing friends away with her demanding behavior at times.  I don’t want to see her friendless. She doesn’t have any friend who has really stuck with her in life. They all come in for a season and drop out after a while. Often I have seen why.

I try to help my daughter to go slow, to learn how to relax and trust God with things. It appears to me that this is honestly a “Can’t, not won’t” issue.

There is an issue going on right now with a boy that she is dating , she is terribly unhappy about it, and will be until it is settled. She can’t let it go.  It is the one thing on her mind.

She is texting him constantly to try and get him to resolve it and he isn’t responding back. Is this going to be another loss for her?  I am trying to trust God about it all myself. I want her with the right person in her life. That person needs to be someone who can handle her demanding issues.

Back when she used to go into rages, she would rage in my face, trying to get me to agree with her, or give her the answer she wanted to hear. I couldn’t do that, for one, it would have made rages happen more and two, I wanted her to mature and realize that she couldn’t get her way every minute. If I gave it all to her the way she demanded, she would never mature. She has matured some now. She has managed to get some control over her raging. I also have learned not to push her, or argue with her when she is in that mood. I walk away and let her calm down.

Anyway in today’s pondering, I think I have some clues that are linked to her FASD, her brain injury, as to why she gets this way.

 Deserai is a concrete thinker. She cannot solve problems very well in general because she can’t use abstract thinking. So her problem solving abilities are low. Often I have to solve things for her that she can’t figure out. She will always say, Wow that is a great idea. She couldn’t come up with it herself though, because it takes abstract thinking to solve problems. That is often why these kids can’t do well in math. 

So when she sees a problem, but can’t figure out many solutions to it,  she demands that someone else, an exterior brain, resolves it for her. She feels helpless, overwhelmed until someone finds a solution.

Desi lives in the moment. Often folks with FASD do not have good concept of time. So they don’t think into the future. Right this moment she is hurting and someone has to take that pain away. She can’t imagine that it can be resolved and fixed in time, so she gets demanding that someone fix it now!

 She doesn’t remember what happened the last time she did this to someone. Her memory is impaired. She has had the consequence of loosing a friend, but she doesn’t bring that to the forefront of her memory when she is acting now.  

 She is insecure and frustrated often anyway, as a brain injury keeps her from feeling full confidence in her life about most every thing. 

Her life feels very unsafe and scary when something is wrong. She wants to make it all right and safe, NOW. 

She has no ability to wait for gratification, which is what young children are about and her maturity level is much lower then her 18 years of age.

 So when a problem presents itself in a relationship, Desi will text and push that person to fix the issue, until often she pushes the person out of her life.

 This makes me sad as I don’t want her to be lonely, as the greatest need that my daughter has is for a social life and friends. The  thing that she needs the very most, seems the farthest from her reach, because of her actions.

 I have prayed that God would send her friends that are as needy as she is, so that they would need her as much as she needs them. I am not sure if that is a good thing or not. 🙂

Lord you know what is best for my daughter. Please send her lots of friends and ones that fit with who she is and will stick by her.

Thank you Lord!

Terry Quinn

kidznlildogz@aol.com

FASD and all of it’s brothers? Continued…

I asked for feedback, in my original post on this subject ,and I got quite a bit. If you haven’t read that one, you might want to read it, before you read this one.

https://parentingfasdkids.wordpress.com/2013/04/25/fasd-and-all-of-its-brothers/

Ok, I am going to list some  statements that represent the feed back, that I received from viewers:

1) We cannot leave the word “alcohol” out of the diagnosis, as it is the source and a statement to the world that drinking in pregnancy is dangerous.

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2) Most birth mom’s do not admit to drinking, so it is almost impossible to get a diagnosis of FASD for a kid who has it. So using the term FTBI does explain what my child is dealing with, since he was born with brain damage.

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3) We are just starting to make headway with the world about the dangers of alcohol, we can’t give up on that, though I see the value in terming it a TBI when so many kids are seen as having behavior issues that are blamed on their environment.

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4) I so agree with this. It would be possible for my son to get some support without all the drama.

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5) Our school does not get that our kids can have a high IQ and yet still not be able to function to the level expected. They don’t “GET” that alcohol in utero could do that.

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6) As a person living with FASD, I feel that if there is a stigma involved we have to be the ones to go out there and meet the challenge to show that we are just people too.

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7) I agree that it might be good to have Fetal alcohol spectrum disorders categorized under the umbrella of brain injuries, b/c just like with the TBI there is no cure, there are only adaptations or Accommodations, and medications for the secondary disorders.

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8)  I’d say move on forward with this… I call the adults living with the challenges of FASD – Life Experts

 It is Brain and Body Injury.

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9) It’s very hard to be a one woman army. Taking on the acronym is a complicated battle given the AMA and the CDC never mind all the other organizations. It’s been FAS, FASD since 1973 (Ann Streisguth research) and probably before, but it’s unrecognizability lies in it’s greatest problem…the stigma. I’m not sure that whatever you call it won’t just be swept under the rug in the same manner. It’s a stain on the human experience. It’s weakness, though you and I know that it’s illness that causes one to drink. It’s ignorance, though you and I know that the medical field isn’t committed to sharing its truths, that drinking during pregnancy doesn’t cause harm. It’s a boatload of “stains” of the flaws of being human, which we all are….but no one wants to admit. I think that Nofas has had this huge obstacle and challenge in getting to a tipping point on awareness because of all these reasons…and of course, money….pacs, and other supports of the alcohol industry. It’s a tough nut to crack. That is not to say that I am not optimistic that it can be cracked, but like the environment….it takes more than one prius owner to save the planet. We ALL need to make noise. We ALL need to make a commitment. We ALL need to tell our stories. Our FASD affected need to speak up- which is hard, of course…one becuase many of them don’t have a voice and two because many of them are undiagnosed. And there, goes the rub. Right? So where is the shift most apt to happen? In the awareness? In the ability to get a diagnosis? If it looks like a rose and smells like a rose, it is a rose?! Keep on doin’ what you are doin’! You are creating thought…thoughts are things. Things create movement. Leaders are born…not made. Movement will create change. You are doing great things….don’t get discouraged, I have a feeling we might not see it in our lifetime…but let’s pray our children see it!

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10) BUT the real biggie that hits across the board with these kids is the brain injury. Often they have executive function delays with normal IQ’s. People see the normal IQ and cross them off the list for services, understanding and help. This leads to low self esteem, depression, frustration, pain and often raging.”….. more than the lable, the above is my issue; no one accepts their limitations, especially if they have a normal IQ. they expect the impossible for them and punish or denegrate them for not acting “normally”; then we get depression, anger, frustration, low self esteeem, and they no longer believe in themselves. You may as well punish a paraplegic for not running the marathon. Sorry this really angers me; I have five children with FASD, and yes, TBI is a much better description because then people might accept their limitations and work with them and their parents and empower them to succeed.

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11) In all of my 30 years of working with FASD, with children and families affected by it, and with researchers and experts in the field, there is universal understanding and no denying that this is brain injury. In addition, there is a high degree of sensitivity about the stigma associated with the source of the brain injury being alcohol for both the affected child and, particularly, the birth mother. While unfortunately bearing the associated stigma, there exists some sense of relief in finally finding and understanding the root of the cause of the brain injury; that is, “I am not purposefully a bad kid;” “we are not bad parents.”

Yes, we do need a non-stigmatizing term, but we cannot ever lose site that this brain injury is 100% preventable, and that we have an obligation to educate everyone, particularly pregnant moms and dads, that there is no known safe amount or no safe time to drink alcohol during pregnancy…not a single drop.

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Ok, so in the mixture of feedback, I get some really clear points. We NEED something different like Traumatic Brain Injury because:

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1) So many cannot get the diagnosis of FASD, due to not knowing if maternal mom drank

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2) So many people do not understand FASD where they would TBI.

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3) Kids with high IQ’s, but low executive functions could be understood.

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4) So that we would understand that there isn’t a cure, only adaptations, accommodations and/or medications.

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5) So that our kids with FASD are not stigmatized.

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6) So people would understand that their behaviors are brain injury related and not environmental.

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BUT one very BIG point that I got in the feed back,  WE CANNOT  leave out that alcohol is the cause here and the message that drinking is very dangerous in pregnancy.

Sooooooooo I was thinking today about an addition to the acronym FTBI. How about AR-FTBI?

Alcohol Related- Fetal Traumatic Brain Injury.

Does this make a stronger statement then Fetal Alcohol Spectrum Disorder?

Do you think people will “Get” our kids more if we have the TBI in the diagnosis?

Having Alcohol Related Fetal in there, includes the reason, but the person who doesn’t want to carry the stigma can still just state that they have a TBI for more understanding, compassion etc. from teachers, bosses, out there in the world.

How much more real this would sound, then telling them they have FASD which to the largest part of our population means “Oh you are blaming your problems on alcohol?”

I mean, “I DRANK WHILE I WAS PREGNANT and NOTHING HAPPENED TO MY KID”  That is the response I have often heard OR, the French drink daily, but their kids are ok! Are they? 

So today I told my friend, Ann, that I want to call it AR-FTBI and she ended up in a conversation with her daughter’s case worker at the group home where she lives. She has never been able to get this woman to understand her daughter, so she used this terminology. She told her that her daughter has an Alcohol Related Fetal TBI and guess what? That woman said, REALLY? And she all of a sudden “GOT IT!”  What has taken her years to try and get this woman to understand for her daughter, just clicked.

She responded to Ann, “You mean it is permanent?”

TOUCH DOWN!   Well most of us parents hate using that “P” word, (permanent) , as we don’t want to limit our kids, but we sure do need to get others to understand that at least for now, and a long time from now, our kids CAN’T, not WON’T, BUT are not doing this on purpose!

I welcome feedback on AR-FTBI Alcohol Related- Fetal Traumatic Brain Injury. 

I know full well that I am not going to change  a whole diagnosis with a blog post, but I am going to advocate just the same. If you cannot get your child diagnosed with FASD, maybe one day there will be this option.

If you cannot make others understand what your child is dealing with, maybe explaining it this way will help.

If your child does not like being labeled ALCOHOL, maybe your child can choose to use TBI, as it is the truth.

Thank you Lord for helping us, help children, who have Alcohol Related- Fetal Traumatic Brain Injuries.

Terry Quinn

kidznlildogz@aol.com

FASD and all of it’s brothers?

As a parent of two young adults with FASD, it has frustrated me to no end, how difficult it is to get our world to understand this, or even believe that it exists!

How much MORE frustrating it is for my kids!  How embarrassing it is for a kid to think of themselves as ALCOHOL damaged.  The stigma is huge!  They were HARMED when their birth mom drank.

 The person who drank and harmed their child is also stigmatized. That person cannot admit to what they did, or the world will crucify them! Even though they often had no clue how dangerous it was to drink.

How can we get the world to understand FASD, not stigmatize it, and find a place where our kids can fit? Our kids need services, understanding, acceptance

Well for starters, what are we going to call this?  It currently has several titles which can alone be so confusing.

1) FASD Fetal Alcohol Spectrum Disorder, ‘

2) FAE Fetal Alcohol Effects

3) FAS Fetal Alcohol Syndrome

4) ARND Alcohol Related Neurological Disorder

Our kids have Traumatic Brain Injuries and often due to poly-substance.  Prescription drugs, street drugs, alcohol and pot can make the mix.  We are not calling it PSSD Poly-Substance Spectrum Disorder. Why?  Alcohol is the worst culprit and others can slide off as mild. However I have a son who was supposedly only effected by prescription drugs due to birth mom’s mental illness and he has memory deficits, sensory processing disorder and ADHD. He was effected.

 Simple lack of oxygen during the birth process can cause a TBI. There can be many causes for brain injury before, during and right after birth.  Simple psychological’s and neuro psychologicals’ both can test neuro development and executive functions. Cognitive delays can be found.  

When a child appears able, but absolutely cannot, without help, they are brain injured. What a relief it was to me to figure this out. So many areas I expected my children to be able to function, it wasn’t because they were being stubborn and refusing, but they honestly could not perform these tasks, due to their brain injuries.

 How awesome it would be if they had a diagnosis that understood this and helped them to tell the world what they struggle with, without using the term alcohol. Then others would not look at them like they had ten heads,  are mentally ill, or even worse, WRONG! I mean, so many people deny alcohol can be dangerous. So how can this be true? You are making a big deal out of nothing? What a slap in the face that is to a person who has a TBI!

  Everyone needs to be accepted, understood, loved, and have purpose on this earth. No one likes labels that make them feel victimized, or bad.  Even the term MR is a negative term for it. Some do fit in the MR catagory, and for those, how much better would it be if they could have a brain injury, not a demoralizing brain NAME.

Of course there is another factor here. Alcohol and other substances also can effect far more then the brain. Many FAS children have lung difficulties, endocrine issues and more.

BUT the real biggie that hits across the board with these kids is the brain injury. Often they have executive function delays with normal IQ’s. People see the normal IQ and cross them off the list for services, understanding and help.  This leads to low self esteem, depression, frustration, pain and often raging.

The luckier ones have a low IQ?  Well NOT, but they are the ones that get the diagnosis and possible services.

We need a title for these  neurological-neurodevelopmental  disorders that covers all the basis and yet does not stigmatize the person who has it, nor the birth parent.

 Our children have been victimized enough!  Their world is tough to manage!  They are often seen as normal individuals who are expected to be able to do things that they cannot do.

 They very often need an external brain for life. 

Why are we victimizing them further by labeling them alcohol damaged?  Because no one has thought about anything different?

It is the elephant in the room, but if we look further at the most basic brokenness, they have a BRAIN INJURY!  They have a brain injury that occurred in utero. They present the same neurological findings as folks who have traumatic brain injuries from accidents.

They have a brain injury that can be caused by alcohol and other substances. Even cigarette smoking has been linked to lower IQ’s in children.  

 Why can’t we call a spade a spade? Because it happened before they were born?  

OK then, Call it FETAL TRAUMATIC BRAIN INJURY!!!!  FTBI………….WOW!  This takes the victim out and puts in far more understanding then the drug alcohol. Our world cannot see the danger in the teratogen alcohol, but they would understand the words BRAIN INJURY.

 OH FASD world, give me feedback. Do you feel the same way as I do? Do you think that there should be a proper diagnosi  for our kids to fit into that takes out the victim and stops stigmatizing them?

 Oh LORD HEAR OUR CRY!!!  WE need to get understanding and acceptance for our kids. So many more are becoming victims daily. We can’t shove this under a rug forever. It needs to be recognized. As long as it is stigmatized, it probably won’t get due recognition and understanding.

 Can we use a different set of letters? FTBI?

Terry Quinn

kidznlildogz@aol.com

FASD the lonely hearts club?

Desi and Jon are social extremists and when they are by themselves, not in a social situation, they are in pain and lonely.They both tend to deal with loneliness by sleeping.

Desi and I just had a chat about this. Why is she lonely all the time and why does she feel so needy?

She said that when she is alone, she feels abandoned, rejected, and just not happy. When she is with people the hole inside her is being filled up.  So she constantly craves friends to talk with, be with, have relationships with.

The sad part of all of this is that her need is so great that she often smothers her friends with demands and soon they are no longer her friend. Thus she ends up feeling more rejection, loneliness and despair.

This is a HUGE problem for my two kids with FASD. They seem to plan their whole life around social events.

With support to get up on time, get daily household chores done, and a ride to work, Desi is able to hold down a part time job. She works at a thrift store.  She is able to manage a register pretty well that tells her how much change to give back, and she LOVES being with people. She can chat all the time during her job with new customers and her co workers.  This is rather fun for her and since she has some pretty amazing co-workers, she is very happy there.

Her job fulfills her need to be social. I love that for her. She always comes out of there bubbly and chatting with everyone and I feel good when she is happy.

However in her personal life, I have watched her go through friends on a frequent basis. Especially boy friends, but also this happens with girlfriends.

There are a few reasons for this. She is socially and emotionally immature for her age.  This started to show up at about the age of 16.  Gradually friends were dropping out of her life.

She also can get bossy and demanding and who likes to be treated like that for long? She is so needy that she suffocates her friends at times. Once she has a friend, that friend is going to be hearing from her alot. She can just drain them dry.  One wonders why she hasn’t yet met her carbon copy and wouldn’t that solve the problem? I mean someone who might need her as much as she needs them? 🙂

Desi and Jon both have little  ability to be creative about their lives.  Organizing and planning are a challenge so  having creative hobbies is difficult for them. Their lives are kind of “empty” outside of their job time.   They need their external brain to be there partly just so they are not alone and to manage their empty time.

They both sleep most of the day and get up with no purpose or plan for the day, and both need prompting to get important things done, or these tasks won’t be completed. Then comes the free time. They would sit  there with nothing to occupy it, unless they can find a friend, a party, some where social to meet with others.

Another reason I believe they both sleep alot if there isn’t anything going on socially, is depression. When you are running high on social events all the time, it burns up adrenaline. Too much adrenaline burns up serotonin.  These kids are born stressed and alot of them deal with mood disorders. Their bodies are always in high alert and using up adrenaline. Adrenaline is a drug of it’s own type. It masks pain.

When something really bad happens in our life such as the sudden death of someone close, a person can go into shock. They won’t feel pain for days. The reason for that is the large amount of adrenaline that is rushed through the body. It shuts down the pain receptors.

So keeping life on a social high also helps our kids shut down the pain receptors, but in reality it also burns up serotonin which can cause the vicious cycle. This kind of keeps them on the wheel of seeking people to fill them up on the inside and take away their pain.

  They are often  very bored and both of them will often  just go back to sleep to avoid dealing with that pain. Sleep can be a good thing for them, as it can heal the stress on their body, but too much of it isn’t healthy as it hinders their body’s need to get oxygen and exercise.

As  an “external brain” I find I do need to use gentle suggestions to Desi that maybe she needs to slow down a bit and get some normal sleep. Or maybe tonight needs to be a sit in night just for some down time. When she runs too much, she begins to show it in mood swings.  OR maybe it is the opposite. Maybe now she has slept too much and I need to make her get up and get moving a bit. Then of course I need to help her keep occupied or she is lonely again and wants to go back to bed.

They are adults and we can’t make them do anything, but I find myself trying to help her manage her sleep, resting times, exercise needs and  social life too. 🙂

My heart does hurt for the loneliness that my kids deal with.  I am here. They know that.

DARN FASD!  Stole my kid’s abilities to occupy themselves.

Lord send good and positive friends into my kid’s lives.

Terry Quinn

kidznlildogz@aol.com

Shopping is a drug??

 

Yes! It sure is!

The  brain LOVES new things. It can give a person a high to shop.  Shopping can be like a drug. Granted it is safer then Crack, but in some instances it can put a person on the streets, just the same as other drugs. 

 Kids with FASD often have this problem. They don’t understand money. They can’t do the math. They don’t honestly think about responsibilities such as bills etc.  They can spend and spend and love doing it.

 Eyes see and fall in love. Impulse control is often not there. They buy. They are not keeping track of their spending. Wow, could this be dangerous?

If your kiddo or young adult  with FASD, cannot manage a budget, on their own, then they often can’t manage their spending on their own.

So last week Desi decided she wanted to have a debit card. She wanted to be like other “Adults”. 

We went to the bank and got the card, but I was unsure how this was going to work.  It didn’t really.

She already over spent what she had to spend.

I had asked her to keep receipts and add them up in her calculator. I really felt this would be hard for her and it would take organization skills that she doesn’t have.

I went into the bank account online tonight.  It happened.

I texted her  not to use the card again until next paycheck. She is upset. She wanted to buy food for dinner on her work break. She texted me back. “So what am I going to do about food?”

 I texted back. “Pray”.  🙂

I am not trying to punish her, but if I allow her to keep spending, her money for bills is gone!

She can eat at home when she gets off work.

  If I give her all her money that is above her bills, she will spend it all in one day and have no money to purchase food. No thought is taken about emergencies, or other needs, before the next paycheck. 

So now at least, I take the food money out and hold it for her until we hit the grocery store.

 WOW!  Our kids with FASD need an exterior brain for this! 

  They can’t remember what they spend their money on, as memory is damaged. They buy on impulse without thinking about the price, budget, or if they need to pay a bill, or buy groceries.

  A credit card looks like free money to these kids.  I am not sure if we are going to be able to keep managing with this card, but I won’t give up trying to teach her how to handle it. She hates that she can’t be like other “adults”.

  Jon gets disability and he has a part time job. I manage his disability and pay his bills with it. He manages his job money and he has to purchase groceries with it.  

  He had some savings because he wanted to purchase a car. I don’t feel comfortable with Jon driving, but I have helped  him try and save for a car. 

 This week alone he has taken 260.00 out of his savings. For what? Oh one night he wanted a new tattoo. Two days later he decided he needed cash because his employment credit card was empty.

  Today he called me and asked for 60.00 to lend to a friend who promises to pay him back in 24 hours. Right…….  I gave it to him though, as when it is gone, no car. 🙂

  I asked him if he really thought he would get paid back and he said. “YES mom, this is my DUDE”.

Right………..

 Bottom line, our kids that are FASD effected have great trouble manage money. They are lacking in memory, organization skills and have little impulse control.

This is brain injury.  I never say never ,but if someone wasn’t helping them, both would be living on the streets.

  OH and one more, SO important thing!  Did you know that shopping is an antidepressant? Loads of people do RETAIL THERAPY.  It gives you a high, adrenaline rush, to get something new.

 Our kids are trying to feel good most of the time. Doing Retail therapy on a credit card can be very addicting. Our world is full of people who have huge credit debt from this antidepressant. 

  Adrenaline is a pretty potent drug of it’s own. We all know adrenaline junkies. It makes you feel good. Anything that will produce an adrenaline rush can be potentially addicting for our kids.

  Even acting out can produce an adrenaline rush. Oh my, I touched on a new blog subject. 🙂

Just sayin’.  Our kids need their exterior brain to keep them from starvation and the streets. Keep in mind that they are about half their age emotionally. So my two are ten year old’s. Could a ten year old manage a budget?

Not! a ten year old wants every thing that they see in the store and on TV. If we gave our ten year old’s a credit card???????  OMG!  Imagine the damage? lol. 

 They don’t understand about the price of things. They just see the item, want it, and buy it.  

This is how our kids often think.  

Lord help our kids, to always allow their external brains, to help them.

Help them to find other ways to FEEL GOOD that are healthy!

Also keep them from the temptation to steal, which also can become like an adrenaline drug to their brains.  

Thank you Lord!

Terry Quinn

kidznlildogz@aol.com

Can’t not won’t, but not impossible!

 

 

Learning that my kids with FASD actually cannot do some things and are not willfully, or intentionally, NOT doing those things, was the biggest relief to me!

While raising up my nine, I had expectations of all of my children, but it seemed that Jon was always falling short. I was frustrated often, along with his teachers. I didn’t realize he had FASD until he was in high school, so we did not understand all that we were dealing with. It was quite painful on a constant basis. There were often upset teachers, principals, friends and classmates, with Jon.

He never stopped talking. I mean NEVER!  He never had alot to say but he found a way to talk all the time anyway. Most of it was silly talk. I found it odd that a kid who would never stop talking, had nothing to say to me when we were alone in the car. This same thing happened if he was at a doctor’s office, psychological doctor etc. So doctor’s didn’t recognize a problem with ADHD. He was always this quiet little thing with them.

I think I figured that out now that we have learned so much about FASD. When Jon was with his friends, he was very stimulated all the time. Therefore his response was to talk and talk and talk.

When he was with me alone, things were calm. Since his talking was usually nonsense and goofy stuff, I wasn’t going to chat like that with him. So I would always ask him things to draw him into a conversation and he would give me simple answers. Often those simple answers were , I don’t know, I don’t remember, or he might tell me a lie because that is often the way kids with FASD cover for their lack. They make stuff up. If they don’t know, or can’t remember, they find out that they can make stuff up. It seems to satisfy mom and dad until one finds out that it is a lie, and then they are in trouble, but they don’t remember what they lied about, so they lie again.

Parents are often frustrated when their child lies because they want their kid to become an upstanding and honest citizen and they feel like they are a failure if their kid is lying to them.

What I didn’t understand then and I do now, is that my child could not tell the truth all the time because he either didn’t know it, didn’t remember it, or didn’t want to be in trouble because he has had so much pain in his life already that he has to protect himself.

I sure wish someone would have explained that to me when I was raising up my kids with FASD. It would have saved me a whole lot of frustration and pain.

However, here is where I often see today’s parent of kids with FASD missing the mark. They are now getting the message that their kids “Can’t not Won’t” , so they are accepting that their child is brain injured and that is the end.

NO NO NO!!! We cannot do that. If we do, we are going to stunt our children’s growth and possibilities.  Maybe at that point in their life, they truly “can’t not won’t”, in some area, BUT we must still continue to teach and discipline. I do not advocate that we live in frustration and discouragement over what our child cannot do. I never knew that my kids had FASD, so I treated them all the same. YES there were times when we are far more frustrated and upset then we should have, or could have been. BUT I continued to teach and give my kids consequences for their digressions and today I have some pretty awesome young adults who CAN in alot of areas that they use to not be able to. They did learn.  My daughter Desi RARELY lies to me now. She no longer steals from me. She learned. I didn’t just accept that she could not learn these things. I kept working at it. I would say that she and Jon required twice as much work as any of my other kids, but it was so worth it. All things are possible if we believe and work at it.

My kids are young adults now and there are still areas that they “Can’t, not Won’t”, struggle in. I am still educating and learning new ways to help them. I believe that there is a whole lot out there that I am just now getting myself about FASD. It is a complex issue.

I am now studying the book that Jodee Kulp wrote “Our FAScinating Journey”available at: http://www.fasdbookstore.com/. It is very educational about the brain. It was a bit deep for me when I first read it, but now it is clicking with me. I am FAScinated by it. lol.  Our brains are so complex. I will be adding some more of my understanding about the brain as I continue my series on parenting kids with FASD and individual issues relating to it.

Every day Desi is an education for me. As she has grown older and her peers passed her in high school with development, I began to see where she was struggling the most. It kind of just showed up when she peaked in certain areas and didn’t seem to be able to get passed them.

The biggest areas that she struggles with today are memory and organization. These two struggles effect every area of her life though.

So in these areas, Desi “Can’t not Won’t”. She cannot do math in her head. She cannot get all that I say to her at one time. Her processing ability is slow and her memory doesn’t save the first words with the next words.

Have you ever listened to an auctioneer? Do you get every word that they say? You mind has to go really fast to pick it all up. One thing that helps is that they are speaking the same thing over and over, so you can get it. But let’s pretend that an auctioneer was trying to explain to you how to fix a washing machine.  They gave you ten tasks in a row that were step by step fixes for the washing machine and they gave it to you really fast in their auctioneer language.

Did you get all those steps? Do you remember them all? Could you now go and fix the washer? I would certainly be lost on the first step, because ONE, I don’t know how to fix a washer, TWO, they spoke it so fast that my mind couldn’t process it all that fast and Three, I have no interest in fixing a washing machine. I am going to hire someone to do it, so forget that.

So in that instant, I “can’t, not Won’t”, but I am also Won’t because I am going to hire someone. I refuse to learn all that stuff.

Well now let’s take one of our kids and their slower processing brain and tell them to do the dishes.

Now you wash the dishes, you dry the dishes, you clean out the dirty sink, then you wash off the counters and clean out the dish cloth.

My Desi has heard wash the dishes, but the rest was too fast for her brain to process AND she doesn’t want to do the dishes, so it doesn’t interest her to remember the rest.

Of course her memory struggles anyway, but some of us parents are going to see that our kids will get things that are important to them and wonder how they got that and not the dishes.

Does this make sense?  Ok, this is going to sound like I am taking my adult child back to kindergarten, but our kids are visual learners, not so much audio. Their minds can see pictures better then they can process words.

So if I make a chart with a small picture of each step of the dishes and put it in front of Desi, she can easily understand how to do the dishes.

If that same auctioneer made me a chart with pictures of how to fix the washing machine, well I might actually get the idea that I can fix that washer, if it is physically possible for me to do those things.

Is this making sense? It is to me and I SO WISH that I knew this when my kids were little.

Ann Yurcek author of Tiny Titan, Journey of Hope, also available at: http://www.fasdbookstore.com/ ,is a close friend of mine. She has raised five adopted children with FASD and now currently has a sixth little one.  We brain storm together often about how to help our kids. She has some pretty awesome ideas and I am learning alot from her.

What ever I learn, I am sharing here because we all need this. So we have been discussing about our kids with FASD and how we just talk too much to them.  We need to go back to kindergarten and find out what kindergarten teachers use. They work alot more with visuals. You will see a kindergarten class room is full of wall pictures. The alphabet is on the wall. Numbers are on the wall. They use flash cards.

This is because our younger kids are visual learners, not so good with audio. WHY? Visual is concrete. Audio is not always concrete and often abstract. Our kids very often are stuck in concrete thinking. Their brain’s are not able to visualize abstract understanding.

Often people with Total Brain Injuries (TBI) have  impaired abstract thinking  that is frequently associated with reduced foresight, judgment, insight, reasoning, creativity, problem solving, and mental flexibility.

Ok for today we are concentrating on abstract thinking.  Math requires abstract thinking, which is why our kids often have great difficulty with math.

Desi cannot add things in her head. She gets very frustrated with very simple numbers if she has to add them in her head.

This week we had a huge issue with her paycheck. I have been trying to help her understand how bills operate since she got her new job in September and is not 18.

So in my educational mind, I am telling her if she has a pay check of 309.00 and her bills add up to 200.00, her food is 50.00 for two weeks, she has 59.00 left. But again in my “educational mind, that thinks this is just so darn freeking easy to figure out, I just simply ask her to do the math. She  can get the 200 plus 50, then she struggles to figure out what is left. Not easy for her at all. I plug in “Terry she cannot do this” into my brain and recognize that she “Can’t not Won’t” add numbers.

Then she says, wait Mom, that can’t be right. There has to be more. OH YEAH, I get 50.00 allowance too. WHAT?  Where did she get that?

Well before I started trying to teach her how to budget her money, I simply gave her 50.00 from her two week paycheck and I paid her bills.

Some how she put that together with her money and thought she had both!  I wanted to laugh and freak out at the same time. My poor girl cannot figure this out.  What am I going to do?

That is when Ann came up with a plan. Get her some play money. Since her check is direct deposit and we don’t have the money in hand, we needed a visual.

So I got the play money, counted out 309.00 and had her pay me the bills out of it. It worked! She got it!  She could see the money. She could not get it from me telling her she had 59.00 and actually thought that she had 50 more because she can’t reason all that in her own mind. It was confusing to her, but when she had the money right in front of her to see, she got it.

So Desi honestly “can’t, not won’t”  do math in her head, but when given a visual, she can do the impossible!!!!!!!  She can also use a calculator pretty well.

So yes knowing and understanding that our kids have areas from brain injury in utero, where they honestly “can’t not won’t”, helps us parents so much with our frustration and pain over their lack and behaviors that are puzzling.  However just because they appear to “can’t not won’t” in a certain area, does not mean that it is impossible to teach them. We need to keep trying and try different if there is a different way. It may seem alot harder with them. It may take alot more effort. It may be totally again’st what we believe or think, but we can change too. We can learn what works with our child and put that into action. It is when we are willing to put those things into action that our “can’t not won’t” child, CAN!!!

Thank you Lord that with YOU, ALL THINGS ARE POSSIBLE!

Terry Quinn

kidznlildogz@aol.com

One THINK at a time, PLEASE?

 

 

Organization!!  OMG!  I hope this isn’t a book, as I could say so much about this area of the brain that cannot function right with our kids that have FASD.  I honestly think Memory and Organization are the two biggest reasons that our kids cannot function well on their own, as adults.

I have seen maturity in lying, stealing, and even in raging, arguing etc. But I don’t see change in their abilities to keep their lives organized, do more then one given task at a time, or manage appointments etc.

If we think about this function of the brain, we can see that it effects every area of our lives.  Daily we manage our lives by a process of planning. We know that certain things need to get done to keep our lives in order and if not done, eventually something or someone will suffer.

We have jobs to do, homes to keep up, yards to take care of, children to care for, appointments to meet and even general fun and relaxation requires organizing to plan for it.

Most jobs require a certain amount of organization skills and the ability to multi task.  Some can become redundant and repetitive and our kids can sometimes manage those types of jobs, but even then, keeping track of a work schedule, getting up on time for work and planning time to get ready for work, all require organization skills.

Ok, so my child starts our as a youngster who keeps a messy room, and doesn’t always keep up with other kids at school work, doesn’t learn as fast etc. and someone thinks this kid is lazy.  Yes, I can understand why you might think that. I thought that about my kids often. I didn’t know why they were not getting that stuff needed to be organized, that homework needed to be turned in the next day or that simple tasks that I sent them on, rarely got done.

In fact they most often lost the homework between here and school. I didn’t understand that myself when my kids were growing up, so I told the teachers that we had a homework monster at our house who eats homework. 🙂

I was learning how to repeat and repeat, but I didn’t know my kids had a brain injury, so I just got frustrated with them. Gosh what a relief it was for me to learn and understand what alcohol has stolen from their brains and why they operate the way they do.

So after years of frustration, here is what I now understand. My kids cannot be told a successive list of things to do. They won’t get past the first thing you told them, due to slow processing and they won’t remember all the list, due to memory damage.

They can’t organize it all in their brain as they live in the very moment, don’t plan ahead much and when they do, they often forget what their plans were.

Are you with me? Imagine this for a minute. Someone comes to you at your job and says “Today you need to wipe down all of these shelves, organize the books on these certain shelves, put away all the books in that cart over there and log all the missing books on the computers.”. I guess you now know that you work at the library. lol.

Does that sound too hard for you?  It doesn’t to me. I might write all the tasks down on a piece of paper though, so I know I won’t forget them, but as my boss has just told me this, I have mentally looked at the shelves that are dirty, the books that need organized, and I know where the cart is of books that need to be put away.  I understand the computer, as I work on it daily.

Well now try to think like your child with FASD. The boss just told you all of this and you were thinking about the dirty shelves when he said all the rest. You never got past the dirty shelves. You went to clean the dirty shelves and didn’t remember anything else, so you saw something in the corner that caught your attention and started reading those books. WHOA you made the boss mad and you got fired!

This is what I see happening with my kids that have FASD. They rarely get past the first instruction and if I really want them to do the rest of the work, I need to give them each step to do, and often I actually need to stand their and see that they do it.

How are they going to take care of a home, car, job, property,  children, etc. without that external brain who is instructing them step by step daily to do those tasks? AND I DO MEAN the same tasks EVERY SINGLE DAY!

For instance, my daughter Desi who is 18 does not yet know how to do dishes. She understands how to wash a dish, but there are steps to washing dishes such as putting them away after, washing off the dirty counters, cleaning the food out of the sink, rinsing out the dish cloth etc. and I have to give her those steps every single day or they will not get done. I mean that I honestly have to stand there and direct her to do the counters and then on to the food in the sink and then to rinse the cloth etc. and you would think that after doing this a few times, she would have mastered it? NOT!  Sigh…….But, since I now understand why, I am the one who has to be patient and retell her these steps daily. Trust me, this has change me in a big way.  I cannot get upset. I have to understand.

BUT my poor daughter who is extremely articulate and looks so together to the rest of the world, is always embarrassed when she falls short in these areas to other people who will condemn her and not understand or be patient. I mean she looks smart, RIGHT? EVERYONE THINKS SHE CAN DO THIS!  NO one gets that she needs help and most think that I am the mother hen who won’t let my daughter go blah blah blah…….So not only do I need to help my daughter, but I have to stand against the rest of the world who does not get FASD and continue to do what I know is right, regardless of what they think!

This same problem is in her room. If I ask her to clean her room, she makes piles that include dirty and clean clothes and trash, all mixed together. This makes me sad still. How will she be able to even do the simplest chores for a marriage one day? Will someone need to stand with her and direct her every single day on how to keep a house clean and not have the health department on her case?

I am just being honest folks. This is real. We watch hoarder shows on TV and we think, wow how did they get like that? I would be willing to bet a lot of hoarders have FASD. It is more then just keeping stuff. I guess I am a hoarder in certain areas. I keep lots of art supplies, collect dolls and teddy bears and love crafting. BUT, all my hoards are so neatly organized that I can find stuff. I can enjoy my stuff.

I honestly can’t see how my kids are enjoying the things that they have when they wind up under heaps. I am not a professional on the brain and what takes place to create a thought every time one has to be created.

However I am told that when a birth mom drinks in pregnancy, that brain cells in the baby die. I am told that this creates holes in the brain and causes the brain to literally collapse down on these holes. I think God created our brain some what like a computer with electric circuitry. If I can put this idea into my imagination, the brain is supposed to have a thought that travels and connects with other thoughts. There is a purpose in how our thoughts are organized in our brain. It all works together for a purpose and a plan. We are awesome how we are created.  Our brains are far more beautiful and powerful then any computer on this earth.

But if you take away sections of that brain, then I imagine that those connections are missing. The way God planned for that brain to work, now it cannot connect properly. It has to find new routes or paths to cross and I think some of the bridges are just totally out in the child’s brain with FASD, so those thoughts never get to their destiny. They just cannot go there.

These kids will LOOK like they are getting what you have said. They will even acknowledge that they heard you and will do it, but then not carry it out. Honestly people need to understand that this is a totally honest case of CANNOT, not WON’T!

If we never get that, we are always expecting more from them, then they can possibly do and we will be the frustrated ones. The greatest thing that has helped me in this area, is to accept that they are honestly not able to do these things without additional directions, support and follow through.

Is our world going to understand this? NO! NO! NO! SAD!  We are going to have to educate our world for our kids because even they don’t understand it themselves. They are frustrated with themselves often. They will fail and know that they failed but not be able to do a thing about it. They will get dealt with  harshly by some folks in their world.

This effects every area of their lives. Their jobs, relationships, their homes, the ability to raise children………..OMG! It is scary how much it can and will effect them.

WHY? WHY are we allowing our world to continue to damage our people with a legal drug called alcohol? Why are we not sounding an alarm???????????  This is HUGE!  The more people we damage, the more people we have that can’t work, have to live on welfare, are in jail, or on the streets.

Wake up world!  We need to educate! We need commercials on TV about FASD! TV shows!  Wow~!

That frustrates me more then my children’s suffering, but I do know that God has to provide for them in life and one provision that Desi and Jon will always need is an external brain. Someone who can help them keep their lives organized, help them remember.

Our kids can be quite successful in life if they have an external brain who is committed to being there for support.

Lord please always make sure my kids have that someone.

Terry Quinn

kidznlildogz@aol.com

My child is a thief?

Ok, I promised a series on raising my kids with FASD and the issues that are common and “biggies” with our kids.

I plan to cover lying, stealing, impulse control, inability to organize life, memory, arguing, temper/raging, and more. Each issue over laps though, so when I am done, I hope this series brings all things together.

When we adopted our five infants, we had no idea what FASD was. I had read one book “The Broken Cord” and it only gave me a general idea about it all, but  it left me feeling that FASD effected a child a whole lot worse then what I was experiencing.

I have the beginning of our book on my website. http://www.parentingfasdkids.com Click on Raising Hearts. This book covers how we began, what God brought us through that created our family.

We knew that our kids might come drug or alcohol effected and at the time, I believe I felt drugs were a greater effect then alcohol. I had no clue how bad it could be. I thought alcohol was dangerous only to the people who drank it.

However as I just spoke about, I did read the Broken Cord, but that was after we had adopted three of our kids. All seemed well and I didn’t think we had a thing to worry about.

Then came Jon. The day that Jon was placed in my arms, I honestly felt something was wrong. I didn’t know what, but it was a knowing feeling inside.  As days went on with Jonnie, we had problems. He was a depressed baby. I didn’t understand it all, at the time though. He cried all the time, didn’t smile hardly ever and he had a flat affect most of the time.

I began to wonder if he might have fetal alcohol syndrome, but it was something that I just kept in my heart.  We just raised him up and dealt with every issue that presented.  I think somewhere along the way, I mentioned it to his doctors but no one understood FASD and everyone seemed to believe that facial features were the only way to diagnose it. So there wasn’t much support for my concerns.  At least not until he hit high school.

By then we had experienced tons of medications, lots and lots of principal appointments, issues with teachers and no one would give us an IEP. Life was constant challenges with Jon. I didn’t know as much as I do now about advocating for him and I didn’t understand his problems a whole lot better then his teachers did.

He failed alot though and it was just painful alot of the time.

When he entered highschool, an amazing person came into our lives. Katie E. was our school counselor. She was the first to point me in the direction of FASD. I had spoken to her about it, but she sent me a website one day and I read it and about FLIPPED OUT! I had FOUND MY SON in everything that the website was talking about.

I knew that Desi was drug affected and up until this point, I felt all of her issues were related to drug effects, but I found her there too.

It was a HUGE relief to begin to understand my children. Up until this point, everything that we had dealt with was just overwhelming and without real explanation.

These kids lied to me all the time, stole from us, argued all the time and much more. I had raised seven children before them and most kids do lie and steal at some very young age. They test this out before they know it is wrong and that is how they learn not to do it. They learn from the consequences of getting caught.  However we just didn’t seem to be able to teach Jon or Desi that stealing and lying was wrong.

I am a Christian. I was afraid as a parent that if I didn’t get this lesson through them, that they were going to be criminals and land in jail.  This was a very real and huge fear of mine.

We tried everything.  When they were young, we spanked. When they got older we took things away, privileges, gave time out, made them pay back for their crimes, work for the money etc. We did it all. It still kept happening.

It got to where I was learning to lock stuff up, not leave money in my purse and constantly count things such as socks etc.

Nothing was safe though. I was so stuck on the SIN concept that I got so angry and violated feeling every time this happened. I would be like, they did it again! How could my child steal from me again? Why isn’t he or she learning?  I would be frustrated, angry and felt again like they were going to be long life criminals.

Desi got caught by her sister one day, stealing at her house and this was a pretty big thing. They always denied that they did it too, even if you had total proof that they had done it. Frustration number two. Lying. Again, criminals always came to mind. If they can’t be honest, how are they going to be good members of society and get jobs, be happy adults?

When Desi got caught stealing from Megan, our oldest daughter, Megan had just had enough. This had happened numerous times with her too and so she told Desi that she could not come back to her house again. Well you have to know the relationship there to appreciate just how much this hurt Desi.

Megan who was dubbed Nini when Matthew was  toddler and could not say her name, was the closest thing to a second mom that all your younger kids had. They ADORED NINI!  They all called her that and she adored them too.

So getting in trouble for stealing from Nini and loosing the privilege to spend time at her house, was a big loss for Desi.  She went into what appeared to me to be a huge depression, almost catatonic. She sat on the floor and cried and just could hardly talk. For days she was not ok. This was during a time in her life when she was cutting on her arms too, so I was really concerned about her.

Eventually Megan did forgive her and they smoothed it out. Desi promised never to steal from her again. Do you know that she hasn’t???  This might shock you because she started stealing from me at age 10 and to this very day, I do not fully trust her. Although I am pretty certain that she has not stolen from me in the past couple years. But the Nini incident didn’t stop her from stealing from me. Just from Megan. I have to fully believe that she GOT IT! That there was enough pain there, so that she didn’t go back for more!

I did find things that I wondered about in my kids rooms now and then, and both of them seemed to have many friends that “gave” them things. I don’t know if any of that was true or not, was they never got caught that I was aware of.

What I do know is that they never got into trouble as older children for stealing from stores. It took me a long while to believe that this was actual truth, but looking back now, I know that they were not thieves in stores. So why were they stealing from me and their dad all the time and not at the stores?

I think I do have an explanation for that. One, I was constantly asking them if they wanted to go to jail, when they were caught stealing from me. So I was always telling them that jail was the place for thieves. lol. I did things like put them in a time out in a room alone and later would talk to them about how it felt to be all alone for so long. Then explained that jail was like that. Locked up and alone. If you are reading this and your child has FASD, you know that being alone is the worst punishment on this earth to a kid with FASD.

Anyway, somehow they did get the message that stealing outside the home was a dangerous thing to do. So they were not doing it. WOW! WHY?  I was continually and consistently educating them on these dangers.  I can’t say that I did anything wrong when I was doing this. It felt unfruitful at the time, as it seemed like I had to repeat this message OVER AND OVER AND OVER!  BUT, it did bear fruit in the end. I have since learned that kids with FASD need to have their lessons repeated over and over and over.

I have also since learned that kids with FASD are visual. Telling them stuff over and over doesn’t sink in as fast. They often have slow processing and by the time you are done, they only absorbed parts of all that I have said.

My kids joke today about this. They said that sometimes when I was “preaching” at them in my firm voice, they heard one word over and over and over. THey didn’t hear what I said. It was if I was saying a junk word like Houng houng houng (I think they got this from a cartoon they saw, lol)……..repeatedly and since they both heard it that way, they began to say that to each other. Did you hear her? lol. She said Houng houng houng………and they would laugh. They laughed alot together any way. So they would make fun of me and laugh it off. This of course only made me more frustrated. lol

So I guess maybe if I could have done things differently, I might have drawn pictures, and told picture stories about how stealing could effect the person that they stole from and themselves.  MAYBE this would have been more effective. I say maybe, as I didn’t do it then. I didn’t understand this about my kids. Today I am using this option. I am trying to show my kids more lessons, then just talk about them.  We are still learning lots of lessons that it seems I am educating over and over Even simple things, like how to effectively do  household chores.

Ok back to stealing. Here are some things that did help.  Jon was one that mostly stole the things that he needed or wanted for himself in the house. He stole head phones, MP3 players, socks and clothes that belonged to his sibs. That drove them nuts. They didn’t feel that they had rights to their own clothes. It started lots of sibling fights. I was always trying to help Matt understand Jon’s brain injury along with dealing with Jon for taking Matt’s stuff. Eventually Matt put a lock on his entire dresser. That didn’t always work as Jon actually learned how to break into the lock.

Mike, dad, was constantly upset because Jon stole his head phones or socks. He took to writing his name on his socks so that he could prove that they were stolen, if we found them on Jon’s feet.

One day, it was kind of the last straw. He was just so upset and somewhere God just gave me this wisdom. I told Mike that after all my research on FASD and knowing so many other parents with kids who have this, that Jon isn’t getting this lesson. However we are going through alot of trauma over it. Why not just tell him that if he takes our stuff again, we are taking his money to replace it. We kind of knew that it wouldn’t really teach Jon anything to pay the money either, but it was such a huge comfort to us. We just decided that we could be at peace when we were stolen from and we could buy back what was taken.

WHAT A HUGE DIFFERENCE this made. It wasn’t that we would quit on the child for stealing and the lessons still had to come, but we stopped feeling violated. We gave ourselves back the power to not feel like we were loosing all the time.  We didn’t have to loose. Jon had a job and some money in the bank and we just bought new headphones or socks or what ever the loss was.  It gave us such a feeling of relief. We also were letting go of our anger over his stealing. I mean it wasn’t doing anyone any good to be continually angry over this. We didn’t feel we were making headway and it was part of BRAIN DAMAGE!  We still did wonder if Jon would ever over come this, but we were just over feeling that this was some great sin and our kids were going to be branded thieves and end up in jail. It didn’t seem likely any more, as it was still just us that they were taking from.

Once again I ask why?  Because they could. Because it didn’t feel scary to steal from us. They were not afraid of us, but some where through their lives and experiences they were afraid of jail and did have some respect for that and the police. So we were the victims most of the time. I had to recognize at this point that this was somewhat positive. They did not feel afraid of us, but they did respect the laws of the land.

Now let me take some time to explain why I think the FASD child steals. It took me a very long time to understand this, as of course, I didn’t fully understand FASD until I started educating my self when they were both in high school. Then I don’t think I “got” it totally for years, as these are the years when kids with FASD are peaking sort of. We were beginning to see that they were lagging behind their peers and stuff was becoming really apparent.

I believe that they steal for a number of reasons. They want or need something. They know where it is. They have damage in the area of the brain that solidly tells them right from wrong. This is what I feel is our conscience. However that part of the brain works, these kids have holes in their brains and things are missing. 

They also don’t always understand “what’s mine is mine” concept. It seems that they just don’t fully get ownership all the time.

Then they have very low impulse control. So seeing it, wanting it, doesn’t jump through their brain to what will happen if they take it. That just doesn’t come through the sieve. Just see, want and take.

They have memory damage. This one is huge. They don’t remember what happened the last time they stole something. So seeing it, wanting it, skips over remembering what happened the last time, as they just don’t remember.

Every day is a new day often for our kids. They forget. Memory is such a huge deficit in the brains of kids with FASD. It is one of the biggest problems in my opinion, as it effects so much of their lives.

Then their is their general processing issues. If they are not processing in their brain fast enough to learn that this was wrong to do, then it is kind of like that statement “it flew right over my head.”

Yes and then too, often they have learned to “survive” their lives with people being angry with them. After all it seems that they have managed to be in trouble so much of their little young lives that they have grown this shell of protection. They have learned to tune bad things out. WHY? They hurt. They have had so much pain trying to live in our “normal” world that they can’t take any more. So to protect themselves from the pain of this world, the constant pain, they have developed protectors. They lie for one. Even though they are often not good liars. They can’t process all that you are saying to them, so they don’t even always listen and they have had to put up a protective shell to keep some of the pain out.

Can you see where I am leading here? We have these kids that seem like constant criminals who actually have such a bad brain injury that they cannot control impulses, don’t understand right from wrong, don’t feel bad when they do something wrong ( brain injury), don’t remember what happened the last time that they did this wrong, have processing difficulties when you talk about what they are doing wrong and they have to protect themselves as once again they are caught and our grief causes them pain.

Do you get it? It is not simple at all, but it does make sense to me.  So what do I think is happening? Well when my neurotypical kid stole gum from the store at age 5 or 6, he was marched back to the store manager and made to apologize. he was embarrassed, hurt, sad, and never forgot that. So when he was faced with the temptation to do it again, he has self control, he remembers what happened last time, he did “get ” that lesson and so he resists that temptation.  He isn’t continually being in trouble, he doesn’t have to shield himself from pain on a daily basis. He is a happy kid who now understands that stealing is wrong and he has that part of his brain working too, so he actually would experience guilt if he did it again.

WOW! We were able to get those lessons through our neurotypical kids fairly easy. But not so with our kids who have FASD. Today they are both 18 and 19 and pretty much get it. I know that Desi has not taken my money for a couple years. I don’t put her in temptation though. I still hide my money.

She has a job and has never stolen from her job.

Jon lives with his brother and room mates and there were problems at first, but after disappointing his brother a few times, he appears to have gotten it too.

Neither one of them are criminals and I no longer fear that they will end up in jail. They did get it. But what took a few times with a neuro typical kid, took years for my FASD kids. They are brain injured. They don’t wake up one day and decide that they are going to make their parents angry and hurt over and over by stealing from them.  They can’t help this. They do need to be educated over and over and over. They do need to suffer consequences. They can learn eventually, but if we parents can also learn why they do it and get some peace for ourselves, then the journey of learning for them will be a whole lot less painful.

One more critical thing that I learned about all this. Desi and I talked alot about stealing after the incident with Nini. She did share with me that she would see something that she wanted, take it and it would sort of give her a “high” because she got something that she wanted. I would probably say that all of us experience this when we purchase something new that we want.

 Some how though in her injured brain she GOT IT that the high didn’t last and that after it was gone, she was feeling the desire to get it back and the only way to do that was to take something else. 

  That was such valuable information for me. I began to teach my daughter how to get the things she wanted that would bless her, in a legal way. I have helped her manage her money so that she can purchase the things that she wants.

  I have asked her to make a list of the things that she hopes to obtain which are the desires of her heart.

 I have shared with her how I pray for things that I need or want and encouraged her to pray for her desires. Then when she has been able to purchase them, or they were granted to her, I have reminded her of the list and her desires and how God has helped her fulfill them.  This has helped Desi a lot towards learning proper ways of getting her desires satisfied, instead of taking someone else’s money to get things, or taking their things. She is learning how beautiful it feels to be blessed by God compared to how bad it feels to get caught stealing something. There is a huge contrast, but this is a lesson that has been hard won. It has taken years.  I am so proud of who both of my kids are today!!

I am so grateful Lord that they are now getting this. I do pray that their brains are maturing and their conscience is forming and they will continue to be over comers!

Terry Quinn

kidznlildogz@aol.com

What if I had never known?

 

I mean if we had not adopted two children with FASD, we would never have understood this. We would not know that it existed. We probably would not really even care.  There are tons of medical syndromes that effect lots of people and I haven’t researched those. I am too busy with my own life for one and secondly, I don’t have a need to know. But yet, the parents that have a child that is effected by another medical syndrome, surely want understanding for their child.

It occurs to me tonight that as much as I want this world to know about FASD, and understand it, most are not going to. They have no need to, if it doesn’t touch their life, or they don’t want to listen. It takes energy to listen and learn about something.  So why am I feeling so bursting at the seams with the need to educate our world about FASD?  Most are not even listening.

Ok, so I truly wish that more doctors understood.  They need to. Kids are suffering today and not getting the services that they need. But once again, the doctor isn’t seeing the need. They are not given this education in medical school and they are oblivious to it.

Teachers? OMG!  Teachers need to understand FASD.  They don’t. OR shall I say, most don’t.  How many kids today in school have FASD and are interpreted as problem children whose parents do not discipline etc., OR they don’t want to learn, they are lazy.  They can’t shut up in class. They won’t listen to the teacher, so teacher cuts out some more of their privileges in an effort to gain some control over their behavior.

Teachers are frustrated with these kids. It is a huge struggle to teach them. If they only knew. If they only understood FASD.

Teenagers?  Having sex, partying, living life on the edge. Just barely out of child hood themselves about to get pregnant and have babies.

Wow, how many teens give birth to a child each year with FASD because they had NO CLUE how dangerous it was to party while pregnant?

Estimations right now are really high on how many children each year are effected by alcohol in the womb. We can’t afford to keep ignoring this world!  One day we will all wake up and everyone left will be effected.  Wow that might sound shocking, but this is spreading like wildfire.

Alcohol is a legal drug that so many people use, and even one drink during pregnancy can harm a child. We really cannot afford to keep ignoring this.

Is there an alarm I can sound out somewhere?  Won’t anyone please put a commercial on TV about the dangers of drinking and pregnancy?

Could there possibly be a reality show about it?  How about educating our teachers and doctors in their colleges? I don’t just mean teaching them that there is fetal alcohol syndrome and it can be spotted by wide set eyes, small heads etc. NO!  Only a fraction of our kids show facial features of FASD.  The rest have the invisible disability, the brain injury.

Those of us who have children with FASD KNOW THE IMPORTANCE of education!  There is alot to it. Even understanding it from a learned point of view cannot possibly prepare a person to deal with it in full.  Those of us who have lived it, we know it. We breath it. We sleep it. We so understand what has happened to our children.

We have all had to learn how to parent differently.  Teachers need to know how to educate differently.  Teens need to have more understanding of the danger in drinking while pregnant, then telling them the simple words that it can be dangerous.  Their children are born, cute little babies and everyone thinks all is well.  They might not know for years how their child has been effected and because they are often too immature to think about a child’s future, it is hard for them to have empathy about FASD in their child. Most often they are trying to manage to grow up some, finish school and now they are pregnant.  How easy it is to go out and party some and take their minds off the stress of all that they are going through. We can’t give them FASD kids to take home for a weekend. I can’t imagine how to recreate that.  There are some materials out there that will speak about brain damage but our teens think that they are invincible and it won’t happen to them.

 Also how do we expect them to get enough understanding of this danger when most of the world is ignoring that it exists anyway?

It seems so fruitless and like such a huge mountain to move.

YET, I know that I am not alone. I know that there are many of you out there that are with me. Many of you will speak to anyone who will listen. Many of you are talking to your doctors, teachers, teens and more.

 I am here to encourage you, don’t stop!  Please don’t stop!  If we all stopped, we will eventually be that crisis I stated earlier. The crippled will be trying to help the crippled.

 We cannot let that happen. Something that is so big already, has to get out.  Our jails are over crowded and a large percentage of people in jail are brain injured.  Brain injuries account for a large problem, impulse control, knowing right from wrong, understanding owner ship and managing anger.

  All of these things lead to crimes. People with FASD don’t always have good support systems. Some of them have parents who have it too. It is so easy for us to just write them all off, but God doesn’t. They matter.

So this is why I can’t stop talking about FASD. I will talk about it any chance I can get. If I can ignite just one fire under one person, maybe they will talk to a doctor, teacher, a teen. Maybe that doctor, teacher or teen will talk to one of the same. Maybe people will eventually hear.

 I am your alarm. The fire has started. It is spreading.  You are going to be over come with smoke if you don’t listen.  Drinking in pregnancy is extremely dangerous.  It can take so much from a person’s life. It cripples them. 

  Those that are already crippled with a brain injury? They need someone to understand them. They need parents who can learn how to help them, how to parent differently. They need teachers that can help them learn. They need doctors and services to help them through this life.

 We dare not shut up. We need to keep trying to find an ear that will hear.

Lord open the ears of those that need to hear about this. Those that need to stop what they are doing and put that drink down. Those that need to learn how to parent or teach differently, so that all those who suffer with FASD can have a chance.

Thank you Lord. So glad that YOU are listening.

Terry Quinn

kidznlildogz@aol.com

PS.  I am about to start a series on raising kids with FASD, or how to parent differently.  I plan to share what I have learned raising my kids. It may not work for every individual, as we are all different, but so many of the same issues are common with FASD. I would like to address them in many different writings. For example, impulse control, Lying, stealing, memory problems, arguing or ODD. etc. I will be writing on each of these individually. I hope it helps some struggling parents.  If you want to make sure you get these, subscribe to my blog and it will come in your email. 

I want to manage my own money!!

 

 

I sure wanted that to happen. Having raised nine kids, you ultimately hope that they all can go out and manage their own lives and the lessons learned while growing up and managing allowances and early jobs, seem to prepare them to take on the responsibilities of managing a home, car, bills etc.

Not so with FASD! Not even close. We know this and have prepared for this. However these kids also want those “adult” rights. So every time I pay bills, I go over things with Desi about how much money is left for groceries and spending etc. and how much goes into her rent, phone, doctor bills etc.

She still doesn’t understand it all and it hurts her brain for me to explain it to her. She still thinks that this is all her money to spend how she wants to.

So one day things came to a big head. “I WANT TO MANAGE MY OWN MONEY!” Ok this stresses out the Land lord, Me. I am not going to fight with her.

MIke and I discuss how this can be handled. She gets paid every two weeks. I guess we can just take out the amount that goes for the bills and hand her the rest in cash, tell her she has to pay for her groceries out of that and make it for two weeks. Sound like a plan?

Wowie, we did that. Desi was happy. All is good. A few days later, I ask her if she would now like to go to the grocery store and get some groceries.

“Um, I don’t have any money.”.

“What? I gave you 120.00 a few days ago for your two week budget!” I am frantically passing through my head that my daughter is going to be very hungry in ten days.

What did she spend it on? She doesn’t know, nor remember. REMEMBER? They don’t do that. They have a brain injury and that part of their brain doesn’t function all too well.

OH yes and so also doesn’t the part that manages money! But she had to find that out for herself or she would have battled me forever. Now she is paying the consequences, as she seeks in the cupboard around the soup cans that she detests.

She won’t eat the type of food that we do. Meat and veggies are taboo and I live on beans and rice, not because we are not able to buy food, but I love that stuff.

We don’t have pizza and chicken nuggets in our grocery budget. We don’t purchase that type of stuff.

I cannot help feeling a tad bit happy that this happened so that maybe she will now let me help her, but at the same time sad to know that she did fail this test. It is always sad when you know that your kiddo with FASD truly CAN’T.

It is really hard to help them understand what they can’t do though. And what is even harder is for them to educate anyone else about what they can’t do. They are embarrassed, or they don’t remember. Memory is always a part of it. They cannot organize thoughts in their brain well enough to explain to someone that they can’t do this. It is kind of a vicious cycle. Someone has to be in the KNOW here. If no one is in the KNOW then this person is doomed.

How many people out there are living like this without the support of an exterior brain that is in the KNOW? LOTS! It is the rare kid that gets to have someone who can be their exterior brain and help them manage their lives.

They might not like it, but without that help, the streets it is. They cannot manage money.

I believe that they can be taught this process slowly and I put no limits on the future. Possibly both of my kids with FASD can eventually get this and take care of their own finances. I truly hope that is possible. I mean I didn’t sign up to be an accountant for life.

The problem with money is it requires math to organize it. This brain trauma has harmed the part of the brain that can do math. They can count change in a register when it tells them how much change to give them, but if you give a kid 120.00 that just seems like riches that will last for ever. So she started shopping for clothes, bought take out foods and before she knew it, it was gone.

Where did it go? She doesn’t remember?

Why isn’t there some grocery money left? She cannot plan, think ahead, nor did she realize how much she was even spending at the time.

She actually has to have a certain amount in her hands and to be told that this amount can be for anything.

Then I have to take her to the grocery store with the rest in my hands until she gets to the cash register and then I give it to her to pay for the groceries.

That is how broken down this has to be.

So here is what ended up happening. I had to go take Jon (son with FASD) grocery shopping. While we were on the way, I talked to Desi about her money management.

I asked her how she ended up spending her grocery money and her response was that she started buying stuff and all of a sudden it was just gone.

Ok so FASD robs the brain of planning. Impulse shopping and living in the moment takes away all future concerns. It didn’t occur to her that she might have to go hungry for a couple weeks. BUT she wanted to manage her own money. That was important to her.

So I asked her if maybe she thought she needed some help managing her money now, so that she would be sure to have food to eat? WOW she agreed! Baby steps here, but this one was quite a big step actually.

I suggested that if I gave her some money to get some groceries today, would she allow me to help her in the future with managing her money so that she would always have food to eat. She was SO relieved! Well I guess food to an empty stomach, which hers was at the moment, sounded awesome! So she would have probably agreed to anything.

But I am planning to write out a little contract and have her sign it. It will simply state that she understands her disability about managing her money totally on her own and she is willing to let me help her manage it.

Then the next time she wants to throw a tantrum over not having her money to manage  herself, I will bring it out.

Oh and also many, MANY times, I have gone over with Desi what FOOD means. Food means meals. It doesn’t mean candy, pop and chips. I guess pizza is allowed, lol.

So each time I have taken her shopping, I have told her if she wants candy, pop or chips, that has to come out of her extra money, not her food money.

So what did she bring to the counter today at checkout? A cart full of pizza, pop, chips and candy! SIGH! I pointed out that this is not acceptable food and she said, well the candy was only 78 cents, blah blah………I knew we had no time to argue this at the store. No time to go back and get better stuff, as she had to be at work and I wasn’t interested in showing Walmarts employees how my daughter can act when I use that dirty word “NO” as she is now an adult blah blah…….so I said nothing further and paid for her crime.

But that little contract that we are going to design tonight? Remember that? Well it is going to have some pictures of pop, chips and candy with X’s through them. I think I will need to show her this before shopping each time as kids with FASD need visuals. They learn better with visuals then hearing. We talk too much. We need to show them stuff more often. lol. I am learning here too. There isn’t an FASD manual out there for parents.

Oh and today Jon did his own shopping. Usually Nate shops for them. Nate is Jon’s external brain who Jon lives with. Nate is my youngest birth son and he is awesome with Jon. BUT today Nate thought it was time Jon did some shopping and learned how to do this.

I took one look at Jon’s cart and knew that Jon didn’t know what he was doing. It was all junk food and quite a bit of it. I made a comment that Nate might have wanted some real food and Jon just shrugged it off and said, “Well he will learn not to send me then, next time.” lol.

Some things can be comical with these kids. Some things need to be reality though.

They need help. They need help managing money and shopping for food. Try and tell that one to a counselor and they will probably think we are not allowing them to grow up. Hey, can’t anyone accept that these kids actually have brain trauma and it is a disability and they do need an external brain to help them manage money, plan, purchase good and right foods?? I can see it. I raised them. I am waiting for the rest of the professional world to understand.

In the mean time it is really nice that at least my kids are” getting” that they do need a little help and they are willing to accept it.

I had to let Desi fall a bit on purpose so that she could see the result. I had to allow her to find out for herself that she needs help. Other wise she would always resent my help.

The next scariest thing that I have to allow is that Jon wants to get his license and a car. YIKES! Gosh I hate to say that I am actually praying he can’t pass the permit test. He has such slow processing. I just don’t think he should be behind a wheel. Trusting you Lord, again. Take care of my kids.

Terry Quinn

kidznlildogz@aol.com

Sudden Peace

Wow!  I am so relieved!  Should I be? I just let my daughter go.  Ya think that was a wise choice?

According to her counselor it is the best thing I can do for her.

I just took Desi over to her new “free” doctor’s site for her nurse checkup. While I was there I ran into her counselor. In all my years of living on this earth, I have not learned to shut my mouth over my kids.  My gosh, when will I learn that? So I did what is normal for me and I opened my MOUTH!

This counselor has met with my daughter two times now and has set up to take her to apply to beauty school next week. She has firmly decided that I am Desi’s problem and I have her labeled  FASD/Disabled, so I am holding her back.  She thinks that she can change the entire situation and get her into school and become an independent girl.  She feels that this is the whole answer to Desi’s depression.

She informed me that I have conflict with my daughter and that I am the reason that Desi is not ok. I need to let the reigns go and allow my daughter to try to become an adult.

That was a mouthful, wasn’t it?  I tried to stand my ground and say my piece back. I tried to educate her about my daughter’s life in five quick minutes. I tried to explain that my daughter almost ended up in jail when she was so stressed with school and work at the same time.  I tried to tell her that Desi is not functional enough to handle a job and school together. I tried to help her see that SHE was setting my daughter up for failure by giving her hope that she can go to this school, work part-time and have the future exactly as she desires.

 I told her that I have a life threatening health issue and I am not physically able to continue to take my daughter to the four appointments a month and that Desi will have to figure out how to get here on her own.  THEN she accused me of trying to stop her visits.  I can see how she would see it that way. We didn’t have time to get all these things squared in just five minutes. I did speak the truth though. I am trying to stay alive here most of the time and just taking care of me is almost more than I can handle most of the time.  My daughter is now an “adult” but she can’t function on her own yet and that still gives me a whole lot of responsibility that I don’t often like, due to my own health issues.  

 Yesterday I took her and Jon shopping and came home and slept for three hours.  I have been dealing with this for ten years and am on complete steroid replacement as my body doesn’t make those hormones on its own. It has been a really hard ten years to accomplish raising my teenage kids, especially the two who have FASD.

 I would LOVE  IT if my daughter could be totally on her own and go to school and not need me for anything!! LOVE IT!!!! 

 I am the LAST person to want to hold my daughter back. I mean it, the LAST!  PLEASE DAUGHTER, PLEASE Get on your own!! lol.

I have kids that have gone to college and one right now at a very prestigious college that is doing awesome! I have raised nine kids. I can’t afford to be keeping kids captive here. My gosh, I want to RETIRE and enjoy my life!

BUT I raised her. I know her. I understand FASD. I know she is limited. I am NOT putting labels on her. I am not purposely trying to stop her from being a success. I am just doing the best I can to keep her going daily.  Do I even get credit for that??????  NO! Instead I get torn down and told that I AM HER PROBLEM!!!!!!!!!!! 

 Where was this counselor when I spent numerous hours helping my daughter at high school, just so she could graduate with her peers?  Where were her teachers?  They didn’t even get how difficult it was for Desi and if someone had not intervened, she would not have graduated. She was failing her classes just because she could not organize and turn in her assignments.  I went in and got assignments from the teachers and sat with her in the Library while she completed them and I turned them in.  Did I do her a disservice by not allowing her to LEARN FROM HER MISTAKES??????  OMG! You people do not get FASD and do NOT GET that this is truly A BRAIN INJURY and you cannot LEARN OUT  A  BRAIN INJURY! If you don’t help the person who is suffering with this, they will fail.  Maybe not every time, but in this case my daughter was about to fail high school.

  When she had full-time high school, she was also working at McDonald’s very part-time.  This was too much for this girl. She was so stressed that she was having panic attacks and rages on regular occasions.  We all saw that she wasn’t coping very well. She was cutting on her self regularly too. 

 On two occasions the police were involved in her rages and on one, she could have been easily taken to jail, as she assaulted someone. 

MY GOODNESS, WE PARENTS saw this!  But you counselor are going to tell me that I am holding my daughter back?  LADY! I am trying to help my daughter survive with what she is dealing with.  But you know what? Since you think I am the problem, and I am holding her back, I quit trying. WHEW!!!!!!!!!!  I am so relieved now. I don’t have to do this any more. The world thinks they know what is best for a person with FASD.

  Oh and by the way, she also informed me that my daughter does not have full-blown FAS.  Um, she is diagnosed partial FAS, yep.  She does not have the facial features that happen ONE DAY during development if the mom drinks on that day. I get so frustrated with people thinking that full-blown FAS is worse than FASD. MY GOODNESS it doesn’t take a genius to figure this out. If the mom drinks nine months and misses that day, how much brain damage does that child have if the mom drinks on that day and misses the nine months? You do the math. That day doesn’t count when it comes to the brain!!

  So by now you who GET FASD, are probably thinking that I am just up and quitting on my daughter. lol.  OH NO, but I am not helping her with this. If she is so independent and I am the one holding her back, then she has to do it totally herself.  Let Counselor find out if Desi can. That includes taking a bus to her  appointments.

 Would that I could quit this entire thing.  YES!  I would love to. Remember how I stated that I can barely take care of ME?  This is a sacrifice that I make every day so that my daughter is not on the streets. God will give me the strength to go on with that.  But I am so much more at peace now as I can honestly SHUT MY MOUTH about Desi’s future and if Desi wants one, she has to do it. Then no one will ever accuse me again of standing in her way, or labeling her etc.

Oh and this disability thing that I work on almost daily, just trying to research, write papers, gather evidence to get her approved???  Well if she can go to school, become independent, she doesn’t need it, does she ? I can relax and not worry about that any more.

 Granted she doesn’t have insurance, but I have worked so hard at that (there I go again, working on her behalf), that I have gotten most of her medications for free and her doctors are now free too, so she doesn’t need medical insurance I guess. Boy I am good!!!!!!!

  Yes I am now a free mom.  I am at peace. This lady tried to make me look like the bad guy, but she set me free!!!!  Free to take care of ME!!  lol. Peace! Love it!

Lord  YOU alone can understand FASD totally. You alone can direct Desi for her future. You have it all laid out for her. We just need to find YOUR will about it. I pray that YOU hear our hearts on this and bring true peace into this situation so that there isn’t division about how to help Desi walk in YOUR plan, for her future. Thank you.

Terry Quinn

kidznlildogz@aol.com

My child can be anything they desire?

 

I missed a phone call today that I didn’t recognize. I got an email with the caller ID and called back.

It was Desi’s marketing teacher from high school. She was doing documentation on her students and where they were at after graduation. She asked me where Desi was working and if she was in college.

Ok, I knew right away that I was in for some explaining, as this teacher fully expects that Desi can do college. So I told her no that she wasn’t and that we had some tests done, psychological etc. that have qualified her for some help services, if she decides to go to college, but right now she can’t handle it. I told her that she is a cashier at a thrift store part time.

To that she responded, “Well not everyone has to go to college and Desi has the skills to work her way up to management in a store”. I was tongue tied at that point and we hung up.

I wanted to beat my head against the desk and I sat there in a bit of shock really. I mean you could have just told me someone died. It was that kind of feeling.

I ran to call my friend and vented. ARE YOU SERIOUS TEACHER? Did you not get my daughter at all, in the two years that she spent in your class?

Desi lives at home still. She is 18. She works part time because when she had a full time plate, school and a very small part time job, she was falling apart every day. She had severe anxiety that built often in to rages and our house and furniture suffered quite a bit during this time. We have decided that keeping her in a very small, simple job and working part time is about all she can handle in this life for now. She no longer has the severe outbursts and panic attacks as regular. She still gets upset pretty easily, as this is a hallmark of FASD, so easily frustrated and angered.

She can handle a cash register because it tells her how much change to give back but if I ask her to add simple numbers in her head, she cannot do it. Since Desi lives at home, she has simple jobs to do in the home that she would have if she had her own apartment, and was living on her own. We decided that since she isn’t very organized (FASD related), nor remembers to pick up after herself ever (FASD related and memory damage), etc. that it would be more simple if she washed the dishes and I cover house pick up. She is also responsible for her two bathrooms and her room.

That sounds pretty easy, doesn’t it? Ok, so there are steps in doing dishes. One has to wash some of them and put the rest in the dishwasher. The washed ones have to be dried and put away. The sink needs cleaned out and the counter washed up. Do you know that my daughter has been doing this chore for years really and still can’t remember to put the pans away, clean out the sink strainer or wash off the counter?? Daily I remind her that she needs to do these parts too. She does dishes after midnight, as that is when she seems to have the most energy, so I am not there to coax her through and when I wake up, these things still remain. Sigh………… Often dishes are also put away dirty and the dishwasher can’t always wash the way she loads.

I mean this is a TOUGH job for a young adult with FASD and I am NOT joking when I say that. It has so many sequences in it that she cannot put them all together. Her room is always a tornado, and yes that is common with teens but with kids that have FASD it includes dirty and clean clothes that are mixed together. Nothing is in drawers and trash is finely mixed in to the group.

Can we say HOARDER? Ya, and we watch TV shows where people live like that and get into huge trouble when they can’t walk in their houses, and we think, “what is wrong with THEM?” Let me inform you. They can’t organize their lives and it might actually be connected to the brain and not just be their weakness.

Desi has felt chilly in her room lately so I gave her a little electric stove to use. I can’t count how many times I have gone down there and found the stove operating amongst the clothes lying on the floor. Are you thinking what I am thinking? FIRE HAZARD! One day it was operating ON HER BED. So I go down and check and I repeat. “You cannot have anything in front of the heater Desi. It is a fire hazard. You cannot run it on the bed.

She will get upset because I have told her something once again, even though I am trying so hard to speak as kindly as I possibly can. But then I go down again and voila! That heater needs to be freed from the clothes again. Do you think this person is safe to live on their own without someone looking over their shoulder now and then to help? That is what an exterior brain does.

I think Desi could be a manager if she had a manager that went with her. Just sayin’. No the teacher doesn’t understand this. She didn’t understand Desi’s IEP at school either and never realized how important it was to stay in contact with me. After all Desi is articulate and can present so professional. She can dress so nicely. She is such a model looking girl, beautiful. Why couldn’t she be a manager? Why can’t she go to college and be anything she wants to be?

I know that I am the one that takes the brunt of this often. I am looked at, as the very over protective mom who is trying to hold my daughter back. At least I have the “Get out of jail free card” that I can use. I didn’t give her FASD. She is adopted.

That is so why there is a huge stigma attached to FASD. People don’t want to talk about this. Someone is going to be shamed and feel blamed for their child’s inabilities. It is so wrong because if we were talking about this, a lot of those someone’s might get the message before they drank and damaged their child.

So I am going to talk about it. No you can’t shut me up. At least, last I checked, we still had freedom of speech in our country. Lol. Our kids need advocates. Our kids need exterior brains. Our kids need to be understood and accepted for what they can do and not for what they cannot. They are still awesome people with so many positive abilities. Can we grow the positives but not ignore where they lack? Can we please not set them up for failure?

Terry Quinn

Kidznlildogz@aol.com

Our Blinded World

I needed to write this out. I need to speak it out of my heart. I feel bursting inside with the helplessness of FASD. The utter misunderstanding of the world towards something that could have been prevented, but alas is so often not and many suffer unknown.

You can’t see it often. It is the invisible disability, but it manifests in so many ways that the person who does understand can see. It makes for so much frustration just to know that this is something that can cripple a person in so many areas, but others will look on and look past it, as though it can’t be real.

It does take a lot of energy to find out what these persons are suffering with because in order to see to the core, you have to live with them.

You have to see daily how many times that they need reminders to do things that are important in their day, and yet the next day it starts all over again.

You might think this can be resolved with a reminder book. Imagine that you can’t remember to do a reminder book. Imagine that you can’t remember to remember to do a reminder book.

Imagine that you can’t organize the minutes of your day because time doesn’t have meaning for you.

Imagine you can’t prioritize your life because you can’t sequence things in your mind. You just live daily as if each minute were a fresh one and what was important a few minutes ago, you forgot.

This might sound a bit like an Alzheimer patient. It is, but this person isn’t at the end of their lives. They are just trying to begin it. They won’t get to the end if someone doesn’t help them get there.

They need an exterior brain to keep their lives on track all the time.

They not only forget, and can’t organize, but they make poor decisions often that are not thought through. They often make these poor decisions impulsively and without thinking because they can’t think through and they forget what might have happened the last time they chose that wrong route. Why? They forget. They don’t have good working memory.

As a result of poor decision making, they often get themselves in trouble or danger. They sometimes need protection just like a toddler, or a young child. But they are an adult and being an adult, they are expected to not need anyone to hold their hand. They are expected to grow up, learn, expand.

Would that they could do that as well as others, but often they can’t and no one notices until they might be in trouble and then the words fly. “Didn’t you think?????” No they didn’t. They couldn’t. They can’t.

But others don’t realize that, so judgement follows.

These people are often frustrated. Imagine if your brain tried to synapse from one point to the other and the route was blocked by holes that looked like swiss cheese. Your connection would take longer. Your processing slowed down. They have slow processing often. Others will expect for them to get it and think that they did, but not realize that they didn’t. These people have learned how to cover that up. You might not notice but later they can’t produce what you taught them. It never registered. Or they thought you meant something else and didn’t dare say different.

So if you test them on what you tried to teach them, they don’t have that information. It never went in, or it was lost because of memory not functioning. Either way, it isn’t there. They will fail the tests.

You will wonder why? Didn’t they study? No they can’t study. They can’t concentrate well enough and don’t have the patience for studying. That stresses out their brain too much.

These people might have certain parts of the brain that are fully intact. Why? Well that week of development might have experienced less drinking during utero. So that particular cognitive function might work great. Does that make sense? To me it does, as I have witnessed it, but to others who see the perfect working parts, that is all they see and they can’t imagine that anything can be wrong if this person looks so good in this area. Unless they live with them. Unless they see daily that the individual with FASD looses things, can’t keep life organized, can’t remember, can’t absorb, can’t pass the test, Can’t get it often and just gets frustrated.

NOT to mention how much this brain damage has also harmed them emotionally and chemically. They battle depression, mania, adhd, the ability to speak the truth, have a conscience, etc.

All this cripples their lives even more. They need a lot more support to keep it together. Stress can send them reeling. Take out impulse control and ability to process fast enough and add in depression, anger and anxiety and WOW you have a time bomb sometimes. This person is expected to learn to control their emotions though. They need to grow up. They can use some tools to manage their anger, right?

Of course, they look so together. They can.

But did we forget that they have BRAIN DAMMAGE? You and I can learn from consequences. We remember what happened the last time. They don’t. They don’t manage time, organize their thoughts and life. They often act on impulse, as that control was taken from them.

Do you realize how many people that have this, are in jail? They are the unlucky ones. They either didn’t have someone who understood them and helped them in life OR they made that one big impulsive mistake without thinking and got caught. They didn’t have a conscience that said this is wrong.

Now they are confused more. Living in a hostile environment and trying to cope. Angry and frustrated, life digs deeper pits.

Why do I write this? Because I UNDERSTAND. I see what has happened to two of my children. I see their struggles. I know that they are trying the best they can. I know that others see them and say, nothing is wrong. Why is this mother being over protective?

I know that often others don’t get it. And they don’t have brain damage. They just can’t see it. They don’t live with it. You gotta live with it to see this.

So if you don’t. Maybe you can take my word for it. It is real. FASD steals a lot from someone. Trust me on this one. These adults need an exterior brain for success in life. They will always need a little bit of help. You can’t emancipate them from that help and expect them to make it. They won’t. You are setting them up for failure, danger, depression, hopelessness, frustration and despair.  

 I will never limit God. I will never limit my child. I will help them reach their highest potential. The key word here is HELP. Without an exterior brain, the person with FASD cannot reach their highest potential.  The invisible disability will bar the road.

 Open your eyes world and look past what looks all together. If you know your person has FASD, don’t look just at the cover. Read the book. Find out what lies within and then help them in the way that is best. Don’t expect them to manage alone. They don’t need pity or coddling. They need a “seeing eye exterior brain.”

Terry Quinn

kidznlildogz@aol.com

A Walk in FAS shoes……FAS Awareness day Sept. 9th

This month we celebrated FASD Awareness day on Sept. 9th.

Alot of people spoke out. I wonder if people realize just how bad being affected in the womb, by alcohol, can be though?

You don’t normally see the disability in infants.

A child is born looking like cute normal usually, everyone thinks they are fine. Wow I got away with it. I drank and nothing happened to my baby.

I did not know that my kids were seriously damaged until they were in their teens.

I knew that they both had ADHD, and Jon had such severe problems always in school, but NO ONE would help me and I was the one sort of blamed for his behaviors.

I mean the thought crossed my mind that his behaviors were inherited some how and maybe drugs and alcohol affects, but I knew NOTHING apart from reading the Braided Cord book years ago, about fetal alcohol syndrome.

In the book, he described a son who was mentally retarded, wore diapers until later in life etc.

That wasn’t my Jon.

So I just didn’t know. AND THE MAJORITY OF THE REST OF THE WORLD DOESN”T KNOW EITHER!

Schools are full of damaged kids that no one understands.

It wasn’t until Desi and Jon hit their teens that it got serious, they began to level out with their abilities and I got the message that they had this and spent so much time researching it.

So our world is raising kids that sometimes appear to be naughty little kids that are hyper, maybe have learning problems etc. and they JUST DON”T KNOW! Until later in life, just how bad this is.

They don’t go to college as expected. THey can’t hold down a job. They can’t take care of themselves properly. They end up with mental disorders, ADHD, and low executive functions. Often they need help for life!

When tested, most of these kids will fall in the delayed areas. They have memory damage that leaves them a life long shortage of ability to just organize their lives. I mean alzimers hits old people and they loose their memory and we all feel the grief of loss, but these kids live with this daily, all their lives.

Both Desi and Jon now need someone to help them manage their lives in a huge way. They just are not very able in many areas. Both of them are great young adults, but they were robbed of their future’s by their mom’s lack of understanding about drinking in during pregnancy.

Now Desi has met her birth brother. The story is on my website http://www.parentingfasdkids.com under Desi’s miracle.

He too has dealt with this and he knew all his life that something was wrong, but didn’t understand what was wrong. Joshua is a huge blessing in our lives now for Desi.

 ****************************************************

Close your eyes and picture self as a baby. You are born. Everyone just loves you. You are a sweet, adorable baby. You grow up to start school. All ready you have had more discipline issues then the average child. Maybe you didn’t potty train on time. Maybe you still wet the bed. Maybe you were often unable to control your emotions and you cried alot. You have no clue that you had a time bomb ticking inside you.

 

They sent you to school. You didn’t fit in so well there, but no one understood you and they tried to make you fit.

Complaints came home to your parents. Parents argued with teachers. Parents were blamed and therefore tried harder to get you to comply, be normal.

Soon your parents had you on an IEP. You were too hyper to learn. You often got hurt very easily and spouted off to teachers and other kids and you were blamed. You didn’t feel like you could help it, but you were blamed.

Home work was impossible, but your parents always tried to get you to do it. So your days were filled with stress of trying to do something that you could not do well. No one noticed that anything was really wrong though. No one connected the dots. You were just a hyper kid that couldn’t behave or learn well, so they were always on you.

Later in your school days, people started giving you medications to control your behaviors. By now you don’t feel so good about yourself. All the blaming has left you feeling like something is wrong with you for sure. But no one notices. To them, you are a troubled kid. You just don’t fit the norm. Maybe your parents don’t know how to raise you, they think. Maybe you just need some more discipline. Someone needs to shape you up for sure.

You begin to slip behind your peers. You spend lots of time in the principals office. A future criminal, some say.

Then it is high school time. By now you are emotionally around 10 when everyone else is growing up. You feel like a lost puppy at times.

You have tried your very best most of the time because you have learned that trying is all you got, but over shadowing trying is a brain that just can’t understand things alot of the time, can’t remember things most of the time and can’t put ideas to gether. You suffer from a lack of motivation and people call you lazy.

You don’t even know how to tell them that you are not that, because you have no real understanding of what lazy means. So more put downs land on your doorstep and crush your spirit some more.

Your lack of emotional controls are starting to loose touch with the lack of understanding from the rest of the world and soon you are firing off alot at people. This is a vicious cycle that is met with more pain and problems because now people are angry back at you often. Your world feels lonely and cold. You can’t sort all that out though, because your brain is so damaged that you don’t understand yourself at all, much less why everyone else is after you.

Eventually you get into trouble for taking stuff from others. You didn’t know for real that it was wrong. I mean you saw it, you liked it, you took it to use. Your brain didn’t connect that with any laws.

But someone is really giving it to you now. YOU STOLE. YOU BROKE THE LAW.

You find yourself in court and you have no explanation for it. Like a toddler that wants it, you just took it, because you wanted it. You didn’t mean to hurt anyone, but more people are making you feel like an inch tall because you are now a law breaker, a criminal.

How did you become a criminal? You were just born, this cute little baby that everyone thought was cute. You were fine. Life just went on.

HOW DID THIS ALL HAPPEN? You are a victim. You are a victim for life unless SOMEONE comes into your life, gets educated on FASD and helps you.

Someone needs to tell you what happened to you. They need to protect you from yourself at times. They need to advocate for you. They need to stand up for you, as you are not able to do it for yourself.

Someone needs to tell you that you are a good person. They need to tell others that you can’t help your behaviors, so that others don’t try to make you fit into the same mold as neuro typical kids. Others need to love you no matter what. They need to give you a safe place to vent your emotions. They need to listen you you more. They need to hold you when you cry and kick and scream.

You don’t know this yet, but your life is going to get stuck in your teens. You are maxing out what your brain can function at. You will still slowly be able to grow up, but you may always need that somebody for the rest of your life to help organize your life, for you. You may need them to remember things, help you manage time and money, and even to find clothes that fit you, since concept of sizes might not be there.

You will never be able to fly the nest totally. If you do, you could end up on the streets as homeless person. You just don’t understand how to pay bills and you are having a horrible time keeping a job. In fact you are late so often and seen as lazy on jobs, that you are fired over and over, even if you are able to get jobs.

If someone advocates for you, keeps track of time to go to work, tells you how to dress for work, helps keep your clothes organized so you can find them, well then you might hold down at least a part time job. However it costs alot more then that to live in this world. You are not making enough money. You are doing your best, but your best isn’t good enough.

So then you need someone to advocate for you again. You need disability services.

By now you have a long list of medical diagnosis and you need insurance to pay for the medications, but you are not able to manage a job that can pay for insurance.

So if you are one of the BLESSED ones with FASD, you have that help. If not, you are probably either on the streets by now or in jail. You are not alone though. There are tons more out there like you.

They had brith mom’s that were not given education either. They drank to cope with their lives and produced kids like you. You feel hopeless, helpless, sad, overwhelmed and you don’t have a future.

Yes you were a cute little baby, maybe even a fun little kid. Everyone thought you were fine. Everyone tried to make you fit into what a normal kid should be like.

It snowballed though. You didn’t fit and you could never fit. You have brain damage. Your birth mom drank during her pregnancy and sealed your fate.

 Do you really know how blessed you are? Your case is milder then many. It can be much worse. You could have been far more mentally delayed. Your symptoms could have shown up right away. You could have serious physical problems too, as alcohol is not a respecter of cells. It kills brain cells, but it also kills cells in other organs in the body. Yes you got off easy for having FASD. 

****************************************************

Please know that this is so REAL and is happening OFTEN. Just hear my heart. Nine months of abstinence from alcohol can give your child a chance at a normal life and not the one depicted above.

If you don’t think that will happen to your child? If you think you will have a cute baby. Read this again. Cute doesn’t make one’s brain healthy. Life long heat ache awaits your child if you pick up that drink.

No amount of alcohol is safe in pregnancy. NONE.

Do some escape it? Some have. It is like playing russian roulette. Alot won’t escape it and you won’t know if your child  will or not. You won’t know at birth most likely either. You might not know until they are half grown up. You won’t understand it even then, unless you get educated about FASD.

It breaks my heart that our world is IGNORING THIS! Alcohol is legal and we are damaging so many of our children because we just don’t KNOW.

 

Terry Quinn

http://www.parentingfasdkids.com

kidznlildogz@aol.com

Doctor, get educated on FASD or ……….

Or what? I mean we are sadly overlooking a huge problem in our society and pretending that it doesn’t exist. In the meantime countless people,children and adults, are not understood, or helped in a manner that is needed.

We all need to be understood, don’t we? Imagine that no one ever tries to understand you. Imagine that no one even cares to understand you. You can’t understand yourself, and the world doesn’t try either. How unfortunate and helpless you would feel.

 That is what is going on with much of our FASD population. Doctors just are not getting educated and parents of such children are frustrated.

Why? Gosh, is this all about the stigma attached to FAS?  I mean we don’t want to offend birth mom’s who might have drank, so we ignore the problem?  Children all over are damaged and in huge need to be understood and helped. Yet parent after parent has tried to get diagnosis and help for their child with FASD and met with ignorance all over.

 I have begun to think that doctors get educated and maybe don’t really care about people, but like their job and their paycheck.

This can’t be ignored any more people!  These kids need services, diagnosis, help!!  We need to open our eyes and get educated on FASD. Kids are going to jail, committing suicide, suffering hugely in schools, etc. because we are not looking at the root cause of their problems and helping them to understand themselves. They need to know and understand what they are dealing with. They need someone to be on their side and stand with them.

 If doctors are going to be ignorant about this forever, then I say the blood of these children is on them. 

Today I took my daughter to a psychologist for some testing. We need her to be tested cognitively as she has some real issues that affect her life. Her psychiatrist thinks she is just fine and can go to college and be anything she wants to be. After all she has a normal IQ.

 Um, really? You don’t understand sir. Many kids with FASD have normal IQ’s, but fall woefully short on executive functioning that so totally affects their abilities to manage their lives on their own. 

 If doctors are just going to continue to ignore this and not educate themselves, eventually they will be taken over with kids that they can’t help. This is not going to stop happening just because we shut our eyes.

 Wake up doctor. Get yourself a little education on FASD.

So back to seeing that psychologist. He talked with my daughter for an entire hour and asked her if she knew why she was here. DUH? So he could test her! So instead he spends the hour asking her why she was here and telling her that she needs to talk over with me why she is here. He brought her out and told me that, and this girl was just totally confused.

Excuse me doctor. We are here so you can test her and tell us WHY WE ARE HERE! You need to figure out what my daughter’s executive function level is. You need to tell us where she is lacking and needs help.  Instead it looks like you are the one who needs the help. Let me give you some medicine. GET FASD 101 into your brain. Don’t stay ignorant on fetal alcohol syndrome. It is here. Kids are suffering. Find out about it. Learn how you can help these kids. PLEASE! Stop treating parents like they are the dummies.  Today it was YOU who proved yourself to be a college educated dummy.

 Just Sayin’

Lord send us a doctor with some brains please. Send us one who has taken the time to understand FASD.

Thank you.

Terry kidznlildogz@aol.com

Relationships you say? Why not? um……..

OUR KIDS AND MATES:

So my daughter Desi has a new boyfriend. Last boyfriend is still terrorizing her phone. He was spoiled by mommy and daddy and the world revolved around him, so Desi had to also.

I was glad when she broke it off because her bipolar moods were OFF THE CHARTS. For the duration of the Max and Desi relationship, we had a whole lot of meltdowns and some got people hurt. The police were involved, I was held hostage on numerous occasions and well, it all just didn’t seem worth it to me! Sigh……

So she went a few months and no boyfriend and things were so peaceful. I liked the Desi that was just spending time with girlfriends.  She was calm and fun.

 Well a few weeks ago she met David.  Everything seemed to be going just fine with him for a while. I was settled into my heart that maybe she found someone calm enough for her.

Then I was on facebook today and saw this message on hers:

“U wonder why I get upset?? Well why don’t u look at the big picture buddy!!! U continue to keep doing the same thing over and over even after I asked you not to!! U might as well stick your middle finger up in my face cuz u obviously don’t care about my feelings!! Well u know what?? I’m done with the disrespect dude. Foreal.

“Well I am like, OMG! THat is the same type of stuff that she used to type to her last boyfriend. What is going on??????? I texted her and she said it was David.  She said she was fine.    FINE?   I am guessing that her “fine” and mine, don’t have the same definition.

 Oh dear, my mind is being attacked. I am remembering all the rages, police etc. with Max and now David?…………..I have to begin to think that it is much more then MAX OR DAVID, lol

These kids are so emotional and sensitive. Relationships are so hard for them. I am continuously seeing Jon and his girlfriend fighting on FB also. Usually jealousy. I try to tell them to let that stuff go. They love each other and it is not worth it. They are like two toddlers who want to own each other and not allow the other any freedom.

 I do think that FASD causes sensory seeking behavior. They have pain inside and adrenaline masks it. It can be like an antidepressant, so they create their own drama to get a “FIX”. Well the rest of us are not really in need of that fix and we are all wondering if we might get through this without a broken chair or a hole in the wall? 

  Oh LORD send strong and mighty angels to Desi and help her walk in a relationship with a little bit of peace?? If not for her sake, do it for mine! lol. Thanks!

kidznlildogz@aol.com

A world where sinners are helpless!

 

 

I have to tell you all that when God came in and made a miracle happen for Jonathan, I got a new vision of who He is. We can’t always do it ourselves, and Jon and I needed a God who could help the helpless.

 He has done just that. Jon is doing fantastic now living with my oldest son.

I helped them move into their new apartment and on that day, my son came to me and hugged me so tight. He told me that he loved me and that he was sorry for all that he had done to stress me out.

He also talked about graduating and that they are all allowed to have a teacher that they pick whose hand they want to shake, on the stage. Jon asked me if I could come up and be that person, because I have been the best teacher he has ever had.

HEART MELT! Healing took place on that day and peace has abounded with Jon and I since. All I can do is praise God about it. It has increased my faith for miracles.

I have to say though, that my kids with FASD have taught me more then I have taught them. I have changed more then they have and I have learned something very powerful about our world through the experience of raising Desi and Jon.

 We are a helpless lot down here on earth and some of us are more so then others, but some of us think we are not until something happens and takes away our power, and then we know that we are.

  We all have sinned. As a Christian, I have always looked at the world as having a choice to sin or not. Man was I wrong. We are such weaklings. FASD creates even a larger weakness and people that have it sure need a God with a big amount of grace.

 People are not that filled with grace when it comes to others. People are much more filled with judgement. I can understand how most would not understand our kids. However I now know that there are so many more people in our world that need understanding, patience, love, forgiveness, and grace. FASD has taken away their ability to be the person that they were meant to be.  Even their mom who gave birth to them, didn’t have the grace or knowledge to prevent it. I sure am not given that place down here to judge one person who drinks during pregnancy. If anyone knew the truth about what it was really doing to their child, they would not have done it.  They don’t know. Some can’t even help themselves. Some are affected with FASD themselves and have become helpless addicts because of their own weakness.

  These people are your neighbors, co workers, and friends. They are in your churches, schools, and jails. They didn’t ask to have FASD and they struggle with it daily to keep themselves together. They just need love, but sadly often they end up more punished on this earth because they cannot manage their impulse controls or they have bit the same battle with drugs and alcohol because of their inner pain and turmoil.

 We need to stop looking at our world as black and white.  Everyone isn’t born with the same chance on this earth to choose right from wrong. We are so quick to call people stupid and idiots and dumb etc. We don’t even realize that a whole lot of folks out there do act that way, but they can’t help it. If they were given a choice, they sure would not have chosen this. They are not stupid, dumb or idiots. They have brain damage that happened when alcohol entered their warm cozy womb and intoxicated their brain. They could not metabolize it like an adult could and brain cells died, and didn’t recreate during that time. Holes were created in their brains, where cells were supposed to be. Then that part of their brain collapsed down. Wiring is disconnected and thought processes are hampered. Impulse control is usually so impaired in the FASD brain and to make a choice to not lie, steal etc. has been taken from them.

 We stand in judgement and say the liars and thieves have their place in hell and we are so wrong. There is a God with so much more grace then we realize. He looks down on these poor lost souls who can’t get it and He has mercy.  After all, He created our brains. He knows every little thing about our brains. If a brain can loose the right to choose right things, then God has to give that person what they need to help them choose right things.

 We often call this the exterior brain.

God has given my son an exterior brain and his name is Nathan, my second oldest son. God has seen to Jon’s very need to have someone who loves him and can help him make good choices for life.

 I praise Him for this as I know for a fact that there are lots of people with FASD on this earth that have not been so blessed. I have a heart wide open though to understand these people and love them. They need grace. They need understanding. They need someone in their corner that will accept them and not label them a bad person.

  The gift of love can only cone from God. It is a love that isn’t selfish and a love that sees to the heart of man. I know that God has given me a portion of that gift. Now I need to hand out grace to those that need it.

 Thank you God for showing me a whole population that is helpless and that you are the God of the helpless.

Thank you for that amazing grace that is here for every one of us. I sure love you Lord.

kidznlildogz@aol.com

Why can’t parents get an IEP?

Does that sound crazy?  Not to me now. Here is what my IEP would state:

This parent has children with FASD and even though you don’t understand HER or HER KIDS, you have to treat her with kindness just the same.

You must believe that she is doing the best she can with her kids and what ever she tells you about her kids, IS THE TRUTH.

She is not making up stories ever. She is not just being a “Mother Bear”.

She is disciplining her children. She is not allowing them to get away with everything. Her children look bad sometimes, but they can’t always help it. No that is not an excuse. It is the truth.

So please be patient with her and always give her understanding. She is probably extremely stressed out. Never take her completely personally.

*********************************************************************************************************************************

Where on earth did I come up with an idea like that?

Well I have gone years dealing with people who look at me like I either think I know more then them, OR I am babying my kids, OR I might be making up excuses for my kids, OR I need to take parenting classes, as I just don’t know how to parent my kids.

I am not understood often. WHY? Because people don’t understand my kids. They expect them to bring forth normal behavior as much as possible, all the time. If they don’t, they are lazy, inconsiderate, liars, mean or what ever along those lines.

My kids are human’s with FASD. Of course they can do things wrong like normal kids and miss the boat, but these kids will struggle far more with the same wrongs then a neuro typical kid will.

So here is my story.  On Friday this week, I had a chiropractor appointment. While at that appointment my daughter’s coach texted me that she was not there.

So I tried to call  Desi to see what was going on. NO ANSWER…….her phone just rang and rang. I knew that she would have walked home from school and had to walk back to the school for track.

We have just recently been going over some of the risks for girls that are taken for human trafficking.

So my mind begins to reel in concern, but not panic yet.

I go to run an errand and try to pace myself fast, so I can get home and see what might be going on.

Next the coach texts me and tells me that she can’t compete on Saturday because she didn’t show for practice.

I was ready to clobber him at that point. My goodness, I was worried that she was ok and he was getting his rules across.

I texted back and told him that I am not worried about the rules right now, but I am concerned for Desi’s life.

I keep trying to reach Desi. No answer.

I pay for my stuff, dash out to my van and try to slightly speed home.

I am praying all the while and redialing her phone. Nothing.

Horrible pictures are trying to attack my mind, but I push them out.

When I get home, there is Desi sound asleep.

DESI!! You are late for track!!!

Oh mom, I was so tired, I fell asleep. She tries to get her wits about her and get dressed for track. Of course she was tired. She had to do a whole lot of make up work that day in school, as I recently got in touch with her teachers to find out what she was behind on.

She also is tired alot with her own physical issues related to asthma.

So I rush her on and we run over to the field. I get out of the car to run over and talk to the coach.

In my mind, we are not that late, as it is just past 4:30 and I thought they practice until 6:30.

I try to see if she can compete, now that she is here. He is saying no.

I try to explain Desi to him. He is not listening.  In fact he is refuting the whole thing with “she has been in track for three years and she never did this before”. At this point, I am thinking, Right, I have always been there. My goodness, are you going to penalize this ONE MISTAKE?

He is angry that she didn’t call him. Well that is a no brainer, she was asleep.

He goes on and gets angry with me. I am trying to explain a bit about her disabilities and he is not listening at all.

Then he said rudely that “Ok she can compete, but if she does this again, she will be out of MULTIPLE competitions”.

I knew that wasn’t a good thing to put on her. One mistake and she will miss a ton of track? I just paid 150.00 the day before for her to do this. I don’t want her to miss a ton. My heart is breaking as this man who is normally so nice is not hearing my heart.

Where is the grace for a mistake?

He walks away. I call after him. “Are you angry with me?”

He states that he is angry at the situation.

Angry? Because she fell asleep and missed one track competition??

Desi wants to know what is going on, so I tell her. She says Mom, I am not going to compete.

So I tell the coach and we just leave. She is hurt and doesn’t want to continue in track.

I am hurt and don’t know why this man is so angry because my daughter was an hour late for a practice, because she wasn’t feeling well.

I have just gone through the mother fears about her life, ran home, hurried her to the field and then this.

We go home. I text him and try to explain why we are upset and I end my text with, I think parents of kids with disabilities should be able to have IEP’s so that people would just treat them with kindness even if they don’t GET IT!

Well in the end, this man did apologize to me, but he stuck by his rules.

We tried to just let it all go and she will be back in track on Monday and competing on Tuesday.

I want my IEP. I want people to accept what I tell them and believe me. I want the world to be kind to me, even if they don’t Get it about my kids.

Raising FASD kids is riddled with missunderstanding from outsiders. It is the story of my life really.  I am considered over parenting, or under parenting, or over protective, or babying my kids, or not disciplining them.  This sounds like I can’t win for loosing, doesn’t it?

FASD is an invisible disability that others see as behavior issues, immaturity, irresponsibility, lazy, and rebellious.

All kids can have a little of that, but these kids have extremes. They are not understood often and neither are their parents.

I know, I need to grow some thick skin, right? Gosh, I have been trying to, but when it comes to my kids, I just thin back out so easily.

I often state, I have nine children. I have raised the ones that do so well. They do not have FASD. Honestly, it is not me. I am giving this all I got.

Give me a break world or get me an IEP!!!

Someone wrote on an FASD board that a man with an autistic child hands out business cards that explain his children’s behaviors.

Maybe I should have done that a long time ago. Now my kids are adult, or near that and it would probably embarrass them.

I love my kids. Lord help the world to understand us. Thanks.

kidznlildogz@aol.com

Getting use to PEACE!

Jon has been gone for 11 days. I have been exhausted. I just collapsed basically, but I can feel myself pulling up some now. I feel like maybe I just came home from a war. Not a war that was won either, but one that just can’t be fought any more.

 Jon is now living with our second bio son, Nate. This was a miracle dropped right out of Heaven. Nate was moving at the end of the month and needed a room mate. They have been together now for a few days and all is going well so far. For Nate, this is just fine because Jon has disability and will be a reliable payee on the rent. It won’t bother Nate if Jon is smoking dope. He doesn’t care what his room mates do. He is treating Jon like an adult and allowing Jon to join in with all his friends. Jon is loving this because “chilling” with friends is what he likes to do. Some how that stimulation of having people around is what keeps him happy.

 I applied to the school to have Jon on home education for the rest of the year, so that he can graduate. We pick up his work at school and Nate is going to help him finish. He only has one class to pass and in special ed, all you gotta do is try and you can pass. I want to see him walk across that stadium and get his diploma. School has been very hard work from day one for Jon and I. We don’t want all that to be a waste.

 Jon is now off all medications and so far, he seems to be managing that too. He even appears to be loosing some weight, which is needed for him. He had gained way too much on his meds. That is the down fall of taking bipolar meds. However I am not settling in on that being a good thing yet. He isn’t in school, so no teachers to fight with, and he isn’t working, so no boss to please. Maybe without all those stressors, he can be ok.

I somehow feel empty though. I can’t fully explain it. I don’t feel lonely and we still have Desi here. She is doing great right now. So it isn’t an empty nest thing. It is more that I don’t have to watch constantly that everything is ok with Jon and having done that for so many years, it leaves me with an adjustment. Can you miss a bad thing? lol. I don’t think so, but there is change to get used to.

  We will never give up on Jon. I hope now that we can help him ever further while living outside our home. I hope that our relationship with him can deepen and grow more peaceful. It has never been that.

 I know that I felt like I almost gave up my life for Jon and though any mom would probably do that for her kid, I am not Jesus and not equipped to die for anyone. I have a lot of healing to do now to over come all these years of stress on my physical body. I know that God is at work and it feels good to know that I have a chance now to go forward and make progress that I can keep.

 Today I have been reflecting on our life with all the kids. Now maybe I can reach back and start blogging on our past a bit. Maybe some of the joyful moments can be brought back up. It sure has been a journey over 31 years. I was thinking tonight that in just two months, I will not ever have to think about grade cards again. Desi and Jon will both graduate. No more IEP meetings, teachers meetings, being mother bear over my child at school, or homework.

 That will be another adjustment. On to a new season. We are having two new grand babies in the fall. We sure enjoy the two grand sons that we have now. They are such a blessing.

Am I actually retiring? I didn’t dream that I could do that, lol. I will try. Let’s see how that goes.

Thank you Lord for keeping your strong angels with Jon. What a blessing you have done for us.

A friend had sent me this scripture before we found out that Jon and Nate would room together:

For He (the Lord) will deliver the needy when he cries

The poor also, and him who has no helper.

He will spare the poor and needy.

And He will save the souls of the needy.

He will redeem their life from oppression and violence.

Jon and I were both the needy and helpless. We both needed a miracle. We could do nothing and yet God did everything. Praise HIM!!

kidznlildogz@aol.com

When the world doesn’t have answers

God just has to!!

We had no choice any more. We had to remove Jonathan from our home this week. He was stealing from us too much.

He got himself fired from his job last week also and we knew things were going to change after that. With Jon having money is everything. He tried everything to get more money from his account and tried to get his ID so he could sell his plasma. He was getting desperate and then he bullied me into my office and stole from my office and then manhandled me so that I could not get it away from him.

 The last day he was here, he broke into my husband’s locked storage and stole a nice set of his head phones. Then that night he took off with his friends about ten and never came back home. It was a school night.

Things were so out of control and I had just come through a horrible physical break from my adrenals due to the stress. I felt that if he was allowed to continue here, it was coming down to me or him. If I am not here, I won’t be helping his future and he would be on his own anyway.

This actually took alot of faith to do, but when we would not allow him back in after he was gone, I felt like a thousand pounds came off me. It was more that I felt constantly violated in my own house and I no longer have to feel that way.

 Jon has been at his druggie friends home all week and he got his last check from McDonalds. I told him to pay some rent to his friend.

He has begged me all week to come home, but I have stood firm. He is great at manipulating me really. I know that now. He will say that he has learned a big lesson. He should have listened to me, but it doesn’t last.

 He is not in school this week and of course that means that there is a chance he won’t graduate. That one was pretty hard for me, as I have spent all his school years plowing behind him and I wanted to see him walk across that stage and get a diploma.

 I have had to release all my hopes and dreams for Jon, up to God, who alone can help Jon now.

I felt so much peace and relief at first. I realized how badly I needed just some respite but there wasn’t anyone to give it to me. I was desperate. Our world doesn’t have the resources that FASD parents can reach out to. If your child has autism, you have someones compassion and services, but FASD is invisible and not very recognized. In fact more often then not, the parents of FASD kids are judged as bad parents, who caused their problems by not parenting them well.

  I am here to tell you that all the good parenting in the world does not always help if the child is as badly damaged as my son is.

My daughter, Desi, has FASD also and she is a joy. She is growing and learning and doing so well. She is not out having sex with boys or doing drugs. She is going to graduate in a few months.

 Desi needs our help too, but she isn’t like pouring sand into a bag with a hole in it, as Jon is. Her bag is filling up and over flowing and good is coming out.

 Of course marijuana is partly responsible for Jon’s down hill slide. It has taken away what little memory he had to begin with and lately he just seems some what empty.

 I cried out for help. I wrote to alot of people and told them that we were at our end. We could not do this any more. I found  out that when you are in that much of a crisis, no one even wants to respond. They don’t have answers either. So they don’t even write back.

  Now that the initial high of relief has worn off, I realize that I have been living in a war zone. I am having flash backs. If I go in Jon’s room, I almost get physically sick. I can hardly bear to have to see him right now at all.

 And yet I am also grieving. Grieving for all the lost dreams that I had for my son. Grieving for the fact that even still, there isn’t any help out there for him. He is basically homeless and I can’t fix that right now.

 I know that no one has the answers, but there is also a part of me that is sad that they all just ignored me. 

 So now it is time God! Time for a miracle for our family and Jon. I don’t have a clue how you can fix this, but I know that you are able. I stand here relying totally on YOU!  Keep Jon safe out there Lord. Send more then his share of angels to watch over him.

 I won’t give up on YOU Lord. You are all we have!!

kidznlildogz@aol.com

Well some victory for a change!

Today was quite interesting. Today I feel like a huge weight has been removed from my shoulders and I passed a giant test. WOW FASD caregivers, I can share some good news for once, lol

If you read my last blog post, you know that Jon decided to quit his job. Well he has had three no shows and is now probably fired. I can’t get him to consider calling them to quit first, or anything, so he is fired.

Well this means that I no longer have to watch his time, get him out of bed and fight with him to get ready on time for work.

This means that there will be no longer any more fighting over how much money he gets for allowance, or why can’t he have HIS MONEY. etc.

There won’t be an allowance and of course less money to do drugs etc.

This actually takes a huge load off me.

He gets SSI and it will pay the rent and food and that is enough for him to make it. There is a bit left for deodorant etc.

I am happy with that. I don’t know what he will do with his time, but my only big concern is getting meds into him daily, and that is all I am responsible for.

THIS IS A HUGE LOAD OFF ME. No more to fight with him about (well that is probably an understatement, but you get what I mean, lol)

I am really relieved and I thought I would be upset if he lost his job.

Now if he gets a job, I am not going to be responsible for getting him there at all. He will have to just get himself there on time and he will have to walk or take a bus. I am DONE!! lol

BIG Relief to me. I MEAN HUGE!!

Well today I was hit with another test and I am happy to say I passed it with FLYING COLORS!! lol

Here is what this kid did:

He came to my room and acted all cutsie. “Ok mom, I think it is time I moved out on my own now.”

WHAT? You just got fired from your job and you are now moving on your own?????

“Yup, it is time.”  Well I am still recovering physically from the weekend and so I am too tired to spend too much time figuring all this out. I just thought he is going to try some things and find out etc.

I did ask him if he was planning to move in with Stephen his friend. He said yes. Well does Stephen have money for an apartment saved?

Yup mom………..well I know that Stephen doesn’t have any money, as he just started a temp job and prior to that, he sold his plasma for his weekly gas and dope. lol.

 OKAYYYY, so he heads out to find an apartment.

RINGGGGGG………..Hello………Mom do you still have an ID for me?

Um, yes you have a high school ID here. I am thinking that he needs that to get an apartment.

So he comes back home and I give him the ID and his meds. I am thinking ahead. He might not be home tonight. 🙂

Maybe 15 minutes later, Jon shows up again. He was so mad. 
THEY WOULD NOT GIVE ME ANY MONEY AT THE BANK!!!! THEY SAID MY ACCOUNT WAS EMPTY!!!!! *the bank is around the corner from our house, DUH, why didn’t I realize that the ID might be for the bank??*

I COULD NOT BELIEVE IT! After going to the bank this weekend and taking out 500.00 of his SSI money and all the upset that this caused, he was going to do it AGAIN?????????

Did he not get the text that I sent to him, JON! I have moved all the money out of your account. You will NEVER do this to us again!

Well if he got that text, his memory fails him.

So think about this. Here Jon was trying to get money out of the bank again. WHAT HE JUST DID LAST WEEKEND THAT I GOT SO UPSET ABOUT, besides the fact that he called the police on me and a whole lot more.

So temptation came across my path.  I could get angry all over again.  I started to, for just a minute………THEN I STOPPED!  NO WAY! I am not going to get angry. I am done with that pain. NO MORE SICKNESS for this mom. Please Lord let me not get angry any more. It is useless.

After I told him that I had removed the money and that he was no longer going to have bank privileges, he stated, “Well then, I am going to stay here”.  Um…………OK…….Ya think?  Maybe just maybe, he will appreciate having a home now and not think he has rights over me any more.

 

Ok, so he went to the bank to withdraw the rest of his money on the pretense of getting an apartment with his friend. Maybe he even thought he could get an apartment with his money. He would have no clue that the apartment company would look at the fact that he isn’t working and was just fired from his job. OR that it would cost probably close to a grand to get an apartment with the first months rent and deposit.

The truth?  I don’t think he was going for an apartment. I think he told me that as he planned to be gone for a few days on a spending spree!

I also think that this bank thing is why he quit working. When he saw money in the bank, I think he thought he was rich without a job. hehe.

So I had to chuckle. I won. I didn’t get angry. I passed the test. YEAH LORD!!!  I PASSED THE TEST!!!

I am so much more free now. Thank you Jesus!!!

kidznlildogz@aol.com

Let God or live with God?

YES you read that right. I have a serious life threatening illness and this week it hit bad. I didn’t think I was going to make it. I have adrenal insufficiency and my adrenals crashed so badly that is was an Addison’s crisis.

 The stress of this weekend with my son was horrific. After he called the police on me, on Friday, he proceeded to go to the bank and withdraw out 500 dollars from his SSI. The bank gave it to him without and ID!  I was shocked!

 Jon went on to spend that entire 500 dollars in two days and when he finally came home on Sunday, he could not remember what he spent it on, other then a huge tattoo on his arms.  He said he bought things and he could not remember what he bought, or where they were.

 He was so tired from not sleeping all weekend that I could not keep him awake to talk about it.

The entire weekend made me so upset. Well getting angry is very dangerous for me. It is a luxury that I just cannot afford.  It hurts my adrenals and I just can’t have it. When I woke up yesterday, I thought I was done for this earth.  I really did. It was scary. I had to take steroids, lots of sea salt and water and I have been in bed every since.

So that entire day, I meditated on Jon and what the Lord would have me to do about him. I wrote this letter to my friend:

I have prayed almost all day in my heart as I have worked to recover from this experience.

I have taken some steroids and lots of salt and water and am at the point of standing up and doing a little now.

I have meditated all day on all the possibilities here.

I believe I have a plan that is God’s plan, but it is not to change my son. It is to change ME!

I have thought over all the stuff that he does that makes me crazy.

I have thought over who I am as a person, and a mom.

Everything that we are going through with Jon, is so against all my learned parenting skills.

He steals from us, stealing is a sin to me and a violation, but in Jon’s mind, he just needs something, so he takes it.

He lies to us all the time, but in Jon’s mind, he doesn’t know what to say half the time and he figures he is always in trouble, or he can’t remember the answer, so he doesn’t speak the truth.

He never comes home on time because Jon lives in the moment and doesn’t understand time any more then a toddler.

He went through 500 dollars this weekend that he got at the bank. I am fixing that issue so he can’t do it again.

However when he came home, he had a tattoo, but could not tell you one thing that he spent that money on. He even bought things and didn’t know what they were or where they were.

He argues his points all the time.

He is determined to get his way all the time, even if his way is bad for him.

He is failing school in his last months of his senior year.

He is doing dope often when he can.

He cannot manage his life at all, other then being with his friends and his whole life is about Chillen” or sleeping.

This is my son. This is as deep as he gets. He could not ever go to any further schooling.

I do not know how he manages his job at Mcdonalds, other then the fact that I notice they always put him on the outdoors window and he probably talks to every customer that comes through, so he loves that social part of his job. He can joke all the time with people as he isn’t very deep in any conversation.

Anway, I realized that my militant beliefs about parenting and living for the Lord are what is taking ME DOWN.

I have to give up EVERYTHING That I believe about all of this.

I am stuck in this middle place. To the left is Jon on the streets and unable to care for himself and off his meds. He will loose his job, be dangerous to others without his meds and possibly dangerous to US.

He won’t leave our house alone, will beg us to come home all the time and probably land in jail.

To the right is Jon with all that he entails living at our house and making me sick if I continue to hold onto all my strong beliefs about what he should be doing.

So here is what I feel God wants me to do.

I give up.

I don’t get angry about any stealing. I just take his money and replace it.

I ignore his lies.

I don’t get mad if he is not home on time, but I did tell him if he can’t be home at 9 on weeknights, to stay with his friend for the night. That way he isn’t going to come in at all hours of the nights on week nights.

On weekends, I leave his window open and he can crawl in when he wants.

I no longer fight with him about money, or use that as any discipline. I simply give him his allowance and if he uses it for dope, ok.

90 percent of all kids with FASD are doing dope because they are medicating their selves. They have nerve damage and life irritates them all the time. Noise and light bother them. Dope calms them down.

He is not drinking, out stealing or committing any crimes that could put him in jail, but even if he went to jail, I have to give that up too.

If he dies out there, then that is his time to go.

If he does not graduate, then I have to say, it does not matter.

I mean, basically, I just have to make sure he has his medications daily and a place to sleep and NOT ALLOW ANYTHING ELSE concern me.

I have to change. I have to let this ALL GO!!!!!!!

If I don’t, then my life is in jeopardy and today was a huge wake up call.

I might need help with this. When something upsets me, I might shoot a vent email to you or my friends. I might ask a friend to pray with me to help me let it go.

I have no choice.

The big thing that I am going to do is go to the bank this week and have him sign over power of attorney of his pay checks. That way, he can’t take them all and go spend them, before paying his bills.

He got 500 dollars out of the bank on Friday withOUT an ID! The bank let him. I have to change the account to have to have two signatures on it. Then he cannot touch it.

He has ordered a bank card and called Mcdonalds to have his money stop being auto deposited. Pretty smart HUH for all else he is.

He likes money, but can’t handle it at all.

I told him that he cannot live here unless he lets me manage that, as it will make me very mad if he just spends his whole pay checks in a day and then has nothing left for his needs.

He does get disability, but if he lived on that alone, he could barely pay the rent and his phone and he would not have anything else.

I will make sure that all his needs are met and he has his allowance etc. BUT he won’t go through the money.

Do you see the wisdom in all of this?

I do, but I also see just how much I will surly need the Lord to walk it all out.

It is the only solution in my heart.

If I change, then living with Jon won’t be so hard.

Mike and I talked it all over tonight and we are both going to try and move in this.

Your prayers have help me sort this out in my heart.

****************************************************************************************

So now I need all my FASD caregiver friends to help me “just say no” to anger about my child.

If you have figured the secret out to this, tell me your secret, lol

Today Jon called me before his work. He said he was quitting his job.  OMG!  Ok Jon, this was my first test. I told him he could do that if he wants.

 He is like, well I don’t feel like going to work today.  OK………who does? lol. 

He didn’t go, he did not call to quit yet, but I know he is written up and might be fired.

I have to say “what ever”. oh wait, this means I don’t have to take him to work any more and this means I don’t have to watch for HIS TIME any more. I am Jon’s clock, lol.  So no more arguing with him about getting up in time to go to work.

OH YES, this means also that Jon will no longer have any more money to spend on dope. Well YIPPEEEE!! 

Ok, LORD! So this could be a good thing. I let it go. I said I was not going to worry about his job, graduation, etc.

My goodness, letting go does feel good. I am not angry at all. WOW!  How did I do that ?

Then at 3 oclock, Jon calls and asks me for a ride from his friends home. I am like, um Jon? I don’t give you rides from your friends. Your friends do that. I am not your taxi. 

 He is like, well it is the same as going to work.  OH YES, but you don’t go to work any more, so I don’t have to do this, lol.

So Jon states, Well then I won’t be home before 9 tonight then.

I am like, Ok Jon, then stay with your friend. That is OK. 

Wow, where is this coming from? I don’t care? I can’t care. I can’t get angry. If I do, I don’t get to live. It is Jon or me here. I want to live, so I must stop caring about what happens to Jon.  I am letting go. WOW!! Baby steps.

Thank you Lord that I had victory today!!! 

One day at a time with the help of my Lord and my wonderful friends with experience.  Praise God!

kidznlildogz@aol.com

Am I enabling? Is he abusing?

Yes!  That is what happened today. Mike and I are discussing whether or not, we need to get an eviction on Jon now.

 Here is the story. Jon is doing dope. Of course you all know that, as I have written many  times before about that. FASD has given his brain enough damage so that he does not make positive choices for himself.

He is currently on the edge of not graduating high school with only  three months to go, due to this stuff called DOPE! 

This mother bear has worked her tail off to get this kid through school all these years. I can’t begin to tell you what it has been like to help a son with FASD get through school

There has been so many calls from the schools over the years for disruptive behavior, fights for IEPS and help, constant discipline at school, teacher complaints, teachers giving up, suspensions on a regular basis, and even a felon on a teacher in high school.

 Now we are three months from the end of this tremendous trial and Jon is giving up because of the drugs that are out there. 

 We have tired every possible thing to get this kid free from this.

We have fined him for it.

We have kicked him out and he comes back like a helpless puppy needing our help and he does need our help.

We have tried lock down and he snuck out the windows at night.

We have tried giving him all his freedom and allowances etc. and he started coming home stoned.

 Now we are trying a new thing. We have stopped giving him money, so that he can’t purchase any of this stuff. We feel that we are enabling him that way.

 So now Jon wants to go get an ID so he can sell his plasma for dope money. I refuse to give him his birth certificate and social card so that he can go do that.

 Ok, so today Jon calls 911 on me. He tells the police that I won’t give him his social card and birth certificate. Well I planned ahead just a bit before they arrived and I called my lawyer. I found out that those documents are MINE and if he wants those documents he has to go downtown and file to get his own.

 He probably does not realize yet that those will cost him some money that he won’t have to pay for them.

Here is what happened though. The officers asked me why was I hanging in there with this son of mine who obviously didn’t want to do anything right? They told me that I am enabling him to do these drugs and I need to go downtown and file an eviction on him to get him out of my house.

Then if he comes back here, he is their problem.

OK PARENTS OF FASD KIDS, What would you do???  Would you continue to help your son graduate? Would you kick him to the streets? I would love it if you would share how you might handle this.

Please don’t tell me what I should do.  I am going to go to my heavenly Father and pray about what I should do.  However I would love to know what you would do if you were in my position. Maybe I can learn from you.

I even asked the officer. “Would you put your son out if he was mentally disabled?”  He said no. Then he looked at the ground, as in that moment, he knew my helplessness. 

After the officers left, Jon came to my door and rang the bell over and over. I asked him what he wanted, as I was uncertain how he was going to behave after that, and not sure I should let him in the house. He said he wanted to get his stuff. Ok legally he can get his stuff.

 He came in the house, ran upstairs where my office was, and began tearing stuff out of my desk. He found a copy of his social, which also had copies of all my family socials and he took it. I tried to get it from his hands and he man handled me, which was abuse to me.

My lawyer was on the phone through all of this and I knew that if I called the police at that moment, I could have had my son arrested for what he did.

He used lots of choice language and went down stairs and cut his part out.

I have endured physical stuff from this kid, emotional agony, and I can honestly tell you that there has never been any real joy in raising Jonathan. 

Does this sound sad? I guess maybe I enjoyed watching him in sports etc., but all the pain that has been there through every day with severe ODD behaviors, are mostly what I have on record in my memory box.

It has always been work and hardship. I bet other parents of FASD kids can identify.

I know what joy in raising a child is, as I have nine total and I have been very blessed with my children. I know that I love Jon with every bit of my heart even though I have had all this hardship.

 Countless nights, Jon has kept me up with this mess. Countless nights he comes home late with red eyes and smelling. Countless days, I try to help him continue in school. Countless days I am badgered by my son, his anger and bad language.

 I keep doing this because I know my son did not choose to be brain damaged. He is unable to live on his own. He doesn’t know how to manage time and get to work. He does not know how to remember to take his meds daily. He doesn’t realize the consequences of his actions.

 He didn’t make the choice to be born so damaged.

 Do I toss him to the streets?

I have never been one to give up on anything or anyone.  I won’t give up on Jon, but putting him out, might not be giving up. I am not sure yet.

Lord, you have a plan for my son. I know that and the plan isn’t for the streets and dope.

You have a hope and a future for my son and the enemy of our souls cannot have my son.

Lord once again, send out the very strongest of angels and minister to my son. Show him how much you love him.  Thank you Lord. You are so good to me.

kidznlildogz@aol.com

No Drinking in Utero-No FASD

No Drinking in Utero-NO FASD

***********************************

By the worlds standards, my son is grown up.

He’s an adult, but his life was messed up.

**

It all began when his birth mom, didn’t know

that alcohol in pregnancy, could damage him so.

**

Now he can’t understand, what is so wrong

He wants to feel like an adult. just to belong

**

He can’t manage time, money or bills

He can’t remember daily, to take his pills.

**

He does not know how to listen, or hear

what could help him each day, for he has no fear

**

of the dangers that lie just waiting for him

to reach out and grab him and take him in.

**

Risk taking is regular, in his life

and he loves to argue, his point in strife

**

As his adopted mom, we chose him

what the future held for us, was very dim.

**

We didn’t realize at the time, that our son

would have problems in life, that could not be undone.

**

Now we grieve, what he cannot be

because our son has FASD.

*****************************

What is that? Would you like to know?

How did alcohol, damage him so?

**

Well you see, little babies cannot drink

intoxication for them is the very link

**

It pickles their tiny, wee little brains

and causes cells to die, growth looses gains

**

Each time it happens, the brain shrinks down

and looses impulses, that carry messages around

**

Soon the routes for thoughts do not work right

this poor child’s life, becomes a great fight

**

Many say, he’s so bad and not right

they think he is angry and not very bright.

**

If he only would listen and learn what to do

All would be well, yes we will fix you.

**

Not going to happen with this child you see.

His brain is damaged, He has FASD.

*****************************

So life goes on for my son each day.

He tries to do right, but there seems no way.

**

He cannot connect, what he needs to grow

He will always be lagging, and struggling so.

**

Managing a job, is a task he can’t do

He needs an aid in life, someone just to,

**

Keep him on, the right path each day

An overwhelming task, I just want to say.

**

My child needs help, for his life to be

safe from bad choices, that he doesn’t see

**

Can put him in danger, jail, or the grave.

He does not realize, how to behave.

**

I want to tell you, that this is not right.

If you will just listen, please open your sight.

**

This can all be prevented, if you will see.

No drinking in utero, No FASD.

***********************************

By Terry Quinn  http://www.parentingfasdkids.com

kidznlildogz@aol.com

UNRULY??

That is what  the gentleman from DD services called my son today.

I have not shared all that we have been through, as I sometimes feel that I get tired of repeating the same old stuff.

We have had a long string of challenges with Jonathan. He isn’t accepted by too many friends and the ones that do accept him, don’t seem to have their lives too together either. Most of them are doing drugs.

Jon does not have cash in hand to do this stuff, but it appears that his friends are only too glad to share and enable him.

We have tried to put him on lock down for a while to stay away from his enabling friends and stay clean for a while.

It is not working well at all.

Jon escaped out his window on Saturday and left for the whole day. He left his phone at home so I could not track him.

Then on Sunday he walked right out of the house, in front of us, and took off with a kid that we know is doing dope.

THat night my husband was so upset that he threw his clothes out.

We were just in shock that Jon just left when we told him not to. We feel helpless to stop his behavior at all.

Of course it was not long before he was begging me to come and pick him up, as he left without a jacket and wanted back in the house.

We just throw up our hands into the air and say “we give up”.

On Monday, with advice from Jon’s teacher, I called DD services to see if we might qualify for their respite services. We were spent totally, emotionally and physically. Couldn’t someone help us? Just take Jon for a few days so that we could breath?

They did send me paperwork out to fill out and see if we can qualify for respite care.

The case manager called me today and talked to me, since I had stated that we had a family emergency.

Since Jon does not have an official diagnosis of FASD, his conversation to me wasn’t the best.

He called my son “UNRULY” and told me that they can’t help him. He said that since Jon was still under a FCCS subsidy, that we have an open case with FCCS and we should contact them to get us help.

Well I  am not sure that this is a real open case. We get subsidy for his adoption that ends when he graduates, but he is not a foster child. If we call FCCS, then we are the ones who will be investigated and I am not fond of doing that. I have nothing to hide, but just don’t like them in our business. I still have one minor in the house who has had some pretty big issues, as she also has FASD.

We talked for a few more minutes and I could see pretty plain that this man did not understand FASD at all. He told me that Jon’s next step was conduct disorder and well I have been down that path before when he was kicked out of school, and got a felony for slamming a door on a teacher etc. He had to attend this special Buckey Boys Ranch school for the rest of the year and they told him the same thing. They practically told him he was headed to jail.

Nothing anyone tells Jon makes a difference. He has brain damage. You can’t tell brain damage to change. He needs a miracle from God for that to happen.

Jon might be unruly to some people, but honestly the term bugs me quite a bit.

It bugs me because Jon doesn’t want to do what he does, or be who he is.

Jon does not know how to stop being Jon.

 It is a weird place to be in when you can see the disability side of stuff and you can’t stand the kid you are living with, but you love him so much that you can’t deal with anyone else calling him names.

I have decided to take a chance on children’s hospital genetics clinic and see if I can possibly get Jon diagnosed with FASD. I don’t know what measurements that they use. Maybe he has some facial stuff that I can’t see. AA kids don’t have thin upper lips in general.

 Jon has absolutely every symptom of FASD and to almost the deepest level. He might not be MR yet, but he is close and in some ways worse. He needs an external brain to take care of him 24/7 and this is for the rest of his life.

  Even his newly opened case with SSI and SSDI has the statement that he has to be reevaluated in three years in case he is no longer disabled.

Would that all parents of FASD kids could see that happen. It sure would give us some hope, wouldn’t it?

 FASD is an invisible disability. If Jon were in a wheel chair, people would bend over back wards to help him. Instead he has brain damage that people can’t see on the outside and what they do see, they interpret as unruly. 😦

AS it is, we don’t know where we are going most of the time or how we are going to get there. I don’t know how people do it that don’t know the Lord. I would sink into a hole and never want to come out. I know that God always has an answer and even though it looks really bleak right now, there is an answer for Jon’s future.

The Lord says in the Bible that He knows the plans He has for us. Plans for Good and NOT for evil. Plans to give us an expected end.

We are claiming that for Jon. Plans for GOOD!!  Only God can make help Jon right now. We are expecting. It has been too long with all this pain. It is time for some Joy. 

Lord send us JOY!  Send the strong angels out to care for Jon every day and send all the Joy that you can, with them. Thanks.

kidznlildogz@aol.com

When the grief is unbearable

Jon and Desi  2011

Yesterday we went to apply for DD services. It was a bit hard because Jon got ODD in the middle of it and argued with me over stuff that I was telling them.

When we got done, the woman stated that they would look at his qualifying factors and decide if it was a matter of “won’t, not can’t”.

My insides just CHURNED! Lady you have no clue. My heart was once again ripped out from my chest when someone did not understand my son.

Today the school teacher sent me some help and I sent it over to the DD lady.

Terry — Below are my comments in regards to Jon’s functional abilities based on the 7 Life Activity Areas:

SELF- CARE

• For Prescribed Medications:

Jon is unable to consistently obtain the correct dosage of his medication. He is not able to identify the medications he takes or the correct amount of each medication that he takes. Jon is not able to understand the implications of not taking his medications. He does not remember to take them — he has to be given his medications each day by a parent or sibling in order for the correct medications and dosages to be taken.

(Added info by Terry Quinn-Jon has to be watched to see that he will swallow the medications or they often will be stuck in his pocked and land somewhere in his room.)

SELF- DIRECTION

• Jon does not maintain healthy relationships. He is easily talked into inappropriate situations — skipping school.

(Added Comment by Terry Quinn- Jon will go with a stranger if the stranger offers money. This did happen one time.)

• Jon ‘reacts’ to situations in which he is frustrated or uncomfortable. There have been two occasions at school where Jon has slammed doors and hit people causing them physical harm. He also throws items. Jon reacts without processing the possible results of his actions.
• Jon is not able to independently arrange medical appointments. He is unable to identify the names of his doctors or the way in which they can be contacted. Jon cannot remember the date and time of appointments.
• Jon does not follow through with decisions. He makes appointments to meet at certain days and times but is unable to remember the arrangements therefore does not follow through. He also jumps from one task to another without fully finishing the first.
• Jon does not comprehend the cause and effect of decisions. This is a documented part of his disability. He will spend an entire weeks paycheck on a tattoos without regards to the fact that he will then have no money to spend for the rest of the week.
• Jon continually repeats inappropriate behaviors in spite of regular consequences. He is has multiple suspensions from school for repeated behaviors. Another example is Jon having multiple no shows at work — if it were not for the communication between Jon’s mother and his manager he would not continue to have his part time job.

ECONOMIC SELF-SUFFICIENCY

• Jon is unable to appropriately budget his money. He cannot approximate how much money needs to be saved in order to pay bills throughout the month. Jon lives ‘in the moment’ and does not understand that he needs to save money for expenses later in the month or even later in the week.
• Jon needs frequent prompting to be on time. He has to be prompted minute by minute to get ready and be ready on time for his ride to work and school — example — Jon get dressed you have 10 minutes; Jon brush your teeth you have 5 minutes; Jon put your shoes on you have 2 minutes — and he has to have a count down while performing tasks … ex: Jon you have 2 minutes left to finish getting dressed. He is often late to class because he gets distracted and loses all track of time to get to class — a special plan had to be created for Jon because of his excess tardies to class.
• Jon has had numerous no show/no calls to work. He would have lost his job long ago without the open communication between his mother and his manager.

I am very grateful to Jenn, Jon’s teacher for all the help that she has given to us. She is an angel.

However last night Jon came home totally stoned out on pot. I was shocked that he would come home in that state. He usually tries to hide this behavior, even though we have highly suspected that he was doing it.

I was flabbergasted! I have a 17 year old daughter, Deserai, whom I can’t set an example, that it is ok to live here and get high. So I had to send him out. He is likely living at his drug friend’s home now.

I feel like I am loosing one child right now, and I could not stand to loose two.

I know Jon is helpless to take care of himself forever, but he lives at this drug kid’s house anyway. The only thing he wasn’t doing is sleeping there.

Then too, sometimes he snuck out at night to be with this guy.

Right now Jon is in an avalanche of danger and only God can help him. He won’t listen to anything I say or do. He is determined to have his way.

He could potentially loose his job and I don’t care right now. If he looses everything, will it save his life?

I don’t know. I don’t know if it is possible for him to recognize when things are totally ran out.

Am I going to have to live a life with him as an “in and out drug addict”?

I can’t. I am not physically strong enough to handle that. He would have to play that out somewhere else.

Am I throwing him to the wolves? Jon was thrown to the wolves the day his birth mom got pregnant with him and never stopped drinking. I didn’t do this to him.

I have raised him and fought for him almost every day of his life. Nothing has ever been easy for Jon and I. It has always been painful.

Why did God pick our home for a child who is so painful? Because he needed someone.

He needed someone who would love him in spite of the pain.

I guess even though I have suffered greatly, it was a good choice for Jon.

The theory that these kids are self medicating is probably true. However drugs are not a safe way to self medicate. They can and usually will lead to other usage, possibly alcohol and worse.

They can lead to death also, so how is that a good thing?

Drugs might be self medicating, but they are a path of destruction and these kids don’t have the ability to self regulate that. They are not social drug users.

The addiction to drugs will cause people to do about anything eventually to get them. Stealing? Jail?

Oh also, I recently saw a video that shows that it is PROVEN through MRI’s that marijuana causes brain damage in teens up to 25. Their brains are still forming.

So they are damaging an already damaged brain. I have noticed lately that Jon has been a lot worse. At times he seems almost like a vegetable that doesn’t care about anything, doesn’t want to do anything, and does not understand much at all that I am trying to help him with.

Life on earth is often about suffering something, sometimes.

Somehow, I need to find peace with this though, as it is tearing me up.

Sadly this is the course for many parents of children who have FASD. They were born drug addicts and when they pick up that drug later in life, they take off where they left off in the womb.

How much more do I now want to spread this message, that it is so unsafe to drink while pregnant. If you are pregnant and drinking, you are sentencing your child for life of pain. Please, PLEASE hear my heart. Give your child a chance. This world is not an easy place to be in when you don’t have that against you. Having FASD just makes it that much harder.

This mom has a huge ache in her heart tonight and all I can do is pray. That is a big thing though, for I know that God gave Jon to us and therefore, I have to trust HIM that God has a way out of this mess for Jon.

Lord, please put your biggest and strongest angels with Jon now. Stop him from any danger. Deliver him from the desire to use drugs. Open his brain up to see the danger he is acting out. Give him a chance God. Please, give him a chance………

kidznlildogz@aol.com

It’s Cold out there

I had removed this post as another parent didn’t understand it. However I am about to post something that is progression to this post, so I am adding this back into my blog. It will help today’s message make sense.

Well this week I actually hit my limit. I had to attend three drug meetings with Jon after he got caught at school with pot and other kids, about to smoke it.

I didn’t want to go to these meetings. I thought since Jon was 18 that he could attend himself. Why punish us parents? However I am glad that I went. I learned some things that were helpful and I saw parents struggling with their possibly neuro typical kids too. It was good to get that perspective. Not all issues are FASD. Some times they are just teenage stuff. I should know that, I have raised nine kids. I just didn’t have near the issues with the other seven, but they did have their times with the world’s temptations too.

Ok, so fast forward to meeting number three, this past Thursday night. Everyone is getting their turn to talk about what is going on. I have been dealing pretty heavily with Jon of late because he doesn’t want to go to work. Well no one just loves to go to work, but Jon’s emotional ability is about half his age, so he is treating his job more like a child would. I don’t want to work, so I just call off. It doesn’t matter that I have real bills to pay. I don’t have a clue what real bills are. I can’t manage money. Doesn’t money grow on trees anyway?

That type of magical thinking is where kids are, but by the time you are 18, you should have a little sense of responsibility. It just isn’t possible for Jon though.

To get Jon to work at his very part time job, I have to manage his time. I have to tell him when to get dressed for work. Sometimes I have to watch him get dressed, or he just won’t do it. He will lay in bed until he is late.

So we were having this battle. Two of his friends had birthdays this week and Jon had put on the calendar at work that he wanted five days off to celebrate these birthdays. FIVE DAYS? WHY? Only Jon understands why.

I told him that he could not take that many days off, as he won’t get enough hours in to work that week to pay his bills.

He insisted that he was going to get that many days off and there was nothing that I could do to stop him.

I had called his job on break to verify that Jon was calling off again. I found out that he was.

I came back to the room and confronted him with that. Jon blew up and used some language that described how he was feeling about me at this time.

So I said “OK Jon, I am done with you. ” I walked out of the room and left that meeting.

I went home and locked all my house windows and doors. Jon wants to be an adult, make adult decisions about his job. Jon can live life as an adult out side my home. I was just done.

About 9:30 my doorbell rings. Jon is outside. I didn’t answer it. Then I get a call. It is his councilor from the program. I tell him that he doesn’t know all that we have been going through with Jon and I am sorry but I can’t explain it all. I am done arguing with my son though and he is an “adult” by the worlds standards. So please don’t worry about him. He has lots of friends and he will find one to stay with.

So he left and eventually so did Jon. However he called me about an hour later and used some more of that nice language with me again. He informed me that his clothes were in my house and he would get the police to help him get them out if I would not let him in. I just hung up the phone and prayed. I don’t like dealing with the police, but if that is what I was going to have to do, then so be it. I cannot spend my life arguing wtih my son. It has worn me out. This is not about this week. This is about Jon’s whole life and how he doesn’t want me to have any part of keeping him on the right path.

So I was DONE DONE DONE!!! I was physically spent. I went to sleep.

Come morning and no Jon sighting. I called the school to warn them that if Jon came to school, he would not be medicated as I kicked him out the day before and he didn’t have his meds with him. Of course I have to protect them from any anger that Jon might spew out on them.

Well then a couple hours later Jon calls me. MOMMY, PLEASE HELP ME! I slept in the park last night. It was so cold. *yep it was 24 degrees that night*. I want to come home mommy. I can’t do this mommy. I can’t take care of myself out there Mommy. PLEASE, PLEASE LET ME COME HOME!!!

Jon, I can’t argue with you any more. It is taking mommy’s heart away.

MOM, I won’t argue any more. I will go to work. I promise. I will do anything mom. PLEASE PLEASE HELP ME???

Jon, will you take a drug test each month?

YES MOM I WILL!!!

Ok, he says he won’t argue. He will take a drug test. I am caving. Maybe he learned something in the cold night. MAYBE. One can hope.

I let him back home and he was so tired he slept all day. He hasn’t argued with me yet and he went to work tonight.

Do ya think that it will last??????? To be continued………..I will let you know………….

Lord, Please let it last. Please don’t let him forget this one lesson. Please imprint this on his brain and over ride his memory loss for just this one thing? Thanks Lord. We both would really appreciate that. I love you Lord.

Edited to Add:

Jon is like a horse. He needs a bit in his mouth to keep him on course. Without the bit, he runs wild.

The phone has always been the bit, but lately it has not worked as well. The big problem is online you cannot turn it completely off so people can still call him. I have to call in to have it turned completely off and that is a hassle.

So now I have told him, if you don’t come home in time for work, don’t come home, the doors will be locked.

I am using it as the bit. Not kicked out, just stay out and he knows what the plan is.

I am going to find out how to do a drug test too.

That is another bit.

Mike and I have always discussed that we can’t kick Jon out. He can’t make it. We had changed our language to fines, grounding, phone off etc.

BUT, now we have a new one.

That night I needed Jon to FEEL like he was OUT. He can survive one night, though it is not pleasant. I needed him to THINK that he was going to have to live like that.

Yes I did let him back in. But now it is another bit and he knows it. We have already discussed that.

The biggest problem though is that I am NOT SURE that I can handle him for life.

So he might have to go out on his own, but I am looking for services for that. Not putting him on the streets.

He is comfortable at home and may not like that either, but it may have to happen.

kidznlildogz@aol.com

When you can’t talk

This week has been one from hell, is seems, but I can’t share about it. Sometimes life is just so personal and I just can’t talk about it on a public forum. It was about the kids with FASD though. They just didn’t do well this week. It was awful. It was one I just don’t want to repeat, ever.

I think FASD is like that. Sometimes kids/adults with FASD just have really bad days. I mean REALLY BAD. It seems that life for them is like riding a roller coaster and the hills and valleys are frequent. I am ready to get off this ride, but I feel locked in my seat and crashing around bends, screaming “Let me off!”, but getting off isn’t possible. The motor is broken. It was damaged by mood altering drugs and alcohol and only a miracle can change that. Not that God isn’t the author of miracles and I am one who is certainly not limiting Him. I believe for the very best for my kids all the time. For now though, each day, I need His grace to deal with the ride.

So this week we were on the top of the coaster and free falling down a mighty long hill going 200 miles per hour and at the bottom, we crashed. It was just awful. That is all I can say. I am still trying to recover from the crash. I am not well. This ride took my physical body to the bottom too.

 I will recover. I always do, but I just want off the coaster. I can see that I am still strapped in and for a few days it appears that we are going to coast. I hope so at least, but then I don’t know when the next bend is, or the next hill, or drop. I don’t know when we will suddenly pick up speed, or fly over a top and crash again.

 I can’t afford the luxury of having fear of what is around the corner. That too, is a dangerous part of the ride. I have to work at letting go,  trusting God and staying close to Him. I have to continue in prayer for my kids.

Every day a little more of my heart, lets go and trusts God more with my adult/almost adult children. I have to. It is more then I can handle alone.

 I have to keep talking to myself. The worst that can happen, is ok. It has to be ok. I can’t afford to spend my heart in worry and fear. The worry and fear is part of the ride. I have to some how, some day, get off the ride. Thirty one years I have been raising children. I want to feel that they are successful adults, that have their own lives.

 It isn’t that way with FASD. It has robbed the two kids/ young adults, that have it. FASD stole their freedom in many ways. It is sad. I get sad. I can’t change it though. One more part of the ride, to learn to accept the things that I cannot change. To let go and let God.

 He has to have the ability to bless their future. He has to take the things that they were robbed of, and turn it around for good in their lives. He is our only hope and we will never stop hoping.

 So though I can’t tell you the details of the week, I have shared the feelings. The feelings of living with FASD. Sometimes I look around me and see others who think life is hard. They think life is hard when they have it seemingly easy. Once I asked God how to deal with that. People would come to me and say, “How do you handle nine kids? I can’t stand the one I have.”. It would make me mad. You don’t understand how easy one is. Why not?  Why God?

 He said, “Terry, I didn’t give them grace for nine. They can’t understand your grace.” Wow, it is His grace. Yes it is hard, but without His grace, I would not be able to live. That is just all there is to it. I would not be here. Since I am, then I know that He is beside me in my coaster car. He is there when I crash. He will not leave me or forsake me, nor my kids. There is a victory for them and we are going to keep believing that we will get it.

 I don’t want to pity my kids. I want to empower them. Empower them to live victorious over FASD. Let’s walk that journey and see how that is done……..Thank you Lord for teaching us how to be victorious over this ride. Show us how to walk over those rough spots and not crash. That alone would be such a victory.  So many parents of FASD are burned out. There has to be an answer for victory over that. I guess for one more day, I will stay in my seat and see where this ride is going. So glad that God is in my seat with me. Thank you Lord.

http://www.parentingfasdkids.com

kidznlildogz@aol.com

Monkeys in Training

Raising kids with FASD is a road that is not fully paved yet. We parents who have discovered that our children have this disability/spectrum disorder, are the ones that are paving it. The library is not loaded with books that are titled “How to successfully raise your FASD kid”, “Surviving FASD”, “How to heal FASD”, etc.

There are a few out there that are sharing their experience and most of them are, or have traveled a pretty bumpy road without any key directions that work perfectly for each child, that is born with this. We are all Monkeys in training.

Every day we wake up with a plan to do our best for our kids and it seems that we are never fully prepared for the curve balls that we get tossed. It might be the same behavior over and over, but do we ever just get used to it?  Can we just say calmly, “Oh well, he just snuck out his window again, no problem, he will be home eventually”. “Oh ok, he is high on dope, no biggie, he will learn soon.”  “Oh my, he got caught by the police again. I guess if he goes to jail he will finally get it.”

 NOT!!!!!!!! NOT!!!!!!!!!!NOT!!!!!!!!!!!!!  That is NOT ME!! I guess this monkey needs a whole lot more training.  I am not calm when my son does these things. Well I am not throwing a fit, crying, or yelling, but it tears me up on the inside. WHY?????  Why can’t I just get calm about constant crisis’? Why can’t it just be that simple? It sure would be a whole lot easier on my health and the emotional status of MY LIFE!

 These kids are totally unpredictable though.  We may get a few days of peace, but that corner isn’t far away often and sometimes it takes us quite by surprise.  Like the night I got woke up at 4 am by a woman who informed me that my son was going to be arrested for breaking and entering and statutory rape!  Yes that was some surprise!!! Us Monkeys just are not built for this type of constant stress.  I do know without the Lord, I honestly would crumble.

I pray. I pray for creative answers about how to deal with my children that are not in any books. Sometimes I get things that work and I share them with my friends. I can honestly say that we are somewhere that we weren’t before. We have learned. We have grown. Well the Monkey Mommy has, but the children, are a bit slower I am afraid.

 I do notice that Desi is growing a bit faster then Jon. She is getting it. She is less affected and I have many hopes that she will be able to be a success in her life.

With Jon, he seems stuck way back there in fifth grade, or some where in that area of life. It is still like that movie “Fifty First Dates” with Jon. We still have to repeat the same lessons daily and even when we repeat it, do we have any hope that it is going to stay there? Not usually and that is what makes this whole thing much like trying to shovel snow while it is still snowing out. It just keeps coming back. The work seems like a merry go round, but it must be done. You can’t leave it undone. We must keep trying.

  Lord please train this Monkey to learn not to react to everything that my children do. Help me feel that the world won’t crumble when they do crazy things? Help me turn off my adrenalin faucet when I see my son’s bed empty and the window open. Give me peace at night when I lay my head on my pillow, that no shocking phone calls will come in. Teach me to trust you fully and please once again, bring out your strongest and smartest angels to watch over my kids. I need them so bad. I am not strong enough yet and I am not smart enough yet.  This road is still being paved. The book is not yet written.  Thank you Lord.

http://www.parentingfasdkids.com My web site that is going to be used to make a difference.

kidznlildogz@aol.com

The little engine that could……..

Why is it that when I see the school phone number on caller ID, that I can feel a surge of adrenalin every time? I mean you would think by now that I would be fully used to a crisis on a regular basis. Right? Why not? Isn’t that what normal life is?  

I will say that is seems to be at my house. I remember when Jon was in middle school and at least twice a week the school would call. “Mrs. Quinn. This is the Mrs. *Principal* at Franklin Woods. Jon is here in the office with me. He is not hurt. He is fine, BUT…………………”

 Then  I would get the rest of the story and is would always mean he was in trouble for something. In those days, I did not know he had FASD. I was living each day just trying to figure out how to help my son and not feel BLAMED for his actions all the time. I did always take some comfort in the fact that he was adopted and surely someone would understand that I was doing my best.

 Fast track to Jon today, a senior, now in special ed with a laundry list of diagnosis’ in place. Everyone at the school knows it is NOT ME, but that Jon has brain damage from his birth mom drinking when he was in her tummy.

 So today the phone rings and it is that school number again. I swear I don’t own a gun, but if I did, it sure would be fun to just once shoot that phone when the school phone number comes up! lol 

  The phone was a recording. “A student in your household was not in attendance at Franklin Heights today”. WHAT? I ran down stairs to see if he was in bed. Nope.  Oh boy. I call the school back, and all the while, I can feel my blood rising up inside me.

 “OH hello Mrs. Quinn. The principal was about to call you…………” As soon as I heard that, I KNEW that I was in for it. I am really trying to learn not to allow things to blow me apart. I can’t handle the after math when it does.

  So I wait. They get him on the phone. I learn that Jon has been caught with a group of kids, before school, just off school grounds and they were all about to GET HIGH!!!!!!!  UM, Ok……….I am not in complete shock here. I knew that Jon had played with this drug before. I have caught him myself. However it has been our policy in the Quinn home that if a teen wants to do drugs, that they hit the road and do it outside my house.

 The problem here is that Jon is very mentally disabled  and  cannot take care of himself out there.

I am requested to pick Jon up at school and take him off school grounds. He has been suspended for nine days. A policeman caught these kids, but the school was able to deal with it so none of them went to jail. Wow, I must be getting use to these close calls with Jail.   Or I should be.

 Now my son has racked up three get out of jail free cards. Does he even realize that this kind of grace does not happen forever? No, my son can’t because he does not EVEN UNDERSTAND the danger.

 Isn’t that scary? He is unable to play football and my heart is broken over that. We worked so hard to get him on the team this year. I do think that is the one thing that has made just a tiny impact on him about this. Can I even imagine for a minute that it might stay up in his brain and remind him next time, just like the hot stove that one got burned on once, might be there to remind one that doing that again might burn you??

 I don’t know yet, probably won’t know for a while, but it didn’t stop him from pulling something else just this afternoon. I told him that he was not playing football today and since I saw him washing his football clothes, he needed to know that so that he would not go to the field.

 One hour later I get a text from his coach. “I just sent Jon home. He is not allowed to ride on the bus tonight for the game. He is not kicked off football though.”

 WHAT?????????? My son just took off to play a game without asking me when just this morning he was GROUNDED, PHONE WAS SHUT OFF and he was FINED FOR THE DOPE? (fining is our way of trying to teach reality as jails do fine people).

 So I go jump in the car and dash out looking for him. He is nowhere to be found. I come home and there he comes around the corner. A picture ot total defeat. “Jon, why did you take off?”

 “I had to talk to the coach”. 

“But Jon, you are grounded and I told you that you could not play football.”

“I just need to ask the coach how long  I am not going to play.”

“Jon you could have called him.”

“I didn’t think of that.”

BUT he did think about leaving when he was grounded. OH WAIT, he already forgot he was grounded? Good chance. Jon forgets everything. Jon’s brain is a blank slate often. Those little neurons that are suppose to fire across his brain, can’t find their way through the maze of holes that are shot in his brain from alcohol. :*(

  That would have been enough today, but as life goes, it wasn’t all. Desi texted me all excited that she got her lip pierced by a friend at school. WHAT???  A KID WITH A NEEDLE STUCK IT IN MY DAUGHTER’S MOUTH? Not a professional?  Not to forget also that I don’t want my daughter pierced in her lip? Obviously she didn’t remember that, as she was so excited to tell me.

 I told her that if she took out the ring, there would not be punishment, but it did add to my streak of adrenalin shots for the day.

So now I am like that little Thomas the train, I think I can, I think I can, I think I can………..just keep on going and not let this day take me down…

Just another day with FASD. It is not my friend. It never will be. You don’t make friends with the perpetrator of your children. You just have to deal with it. 

  Please Lord, protect my two FASD children from themselves. They are helpless Lord. THey need angels with them at all moments. Also God, those need to be the smartest angels you have, because they need to make up for the things that are missing in my kids brains that they had no choice about. Thank you Lord for another day of Grace. Thank you that my son is home tonight and not in jail. 

kidznlildogz@aol.com

Entering the Promised Land

 Matthew is off to college now and I can see such a maturity growing in him. He wants to be on the deans list and he is working so hard to do that. Little sleep and lots of hard work are teaching him that life as an adult is difficult, but worth it. He is making a way for himself and we are all so proud of how he is doing.

  I have to step back some days and just “admire” my children. They each have done so well. It feels great to launch them off into adult hood in a healthy way. 

Megan is my inspiration. She is our oldest and she is in a happy marriage with her bachelors degree in music. She lives life to the fullest and is so strong. She is raising our little grandson, Joshua who is such a treat.  If I had only had Megan and Jacob, what I would never have known about life? We did almost stop having children at two. One for me and one for you………..But God had other plans.

  Jacob is our oldest son and he is now disabled, but he is an awesome son. He is a gentle giant of a guy. He lives with us and he has been such a blessing to have here since he has taken over much of what I was responsible for. I am able now to concentrate on my two youngest children and work on getting well from fibro myalgia.

 Nate is our entrepreneur. He is planning to be a millionaire one day and bless mom and dad. Well that would be awesome, but first I would like to see him get a car, lol.  He is the most positive person on the planet though. Nothing daunts him. He just gets back up. That type of faith can take him far.

 Anna is so happy in her new marriage to Tommy who is such a great guy. We got two great son in laws. Dan who is Megan’s husband is also just what a parent would order for their daughter.Anna has such a strength about her now. She has matured alot. It has been much like watching a flower blossom out into beauty.

Briana is a hard worker and a great mommy to Jayden. He is our first grandson. Gotta love those grand babies. Bri is another one who never complains about life. She is about the sweetest thing on the planet and everyone just loves her. She turns 21 tomorrow.

Caleb has that golden touch. He is the type that can trade a paperclip for a house. He just keeps moving up in life and it seems nothing he does goes wrong. He started out in a fast food restaurant and made it to manager and every year he has improved his job and pay status to now he is writing software. His girlfriend, Kayla is in college to be a doctor. They are going to do very well. It has been so much  fun watching Caleb grow up. Life with him has never been dull or boring. He always has a joke and he keeps you on your toes.

I just wrote about Matt at the top and what an awesome kid he is. He has the whole world in love with him. lol That dimpled smile is what I think does it Or maybe his way of using his last two initials on facebook, IQ. He calls himself that to the world and it is a cute joke. He is so deep in his thinking that it fits too. His middle name is Isaiah and last Quinn, so you can see it was just part of God’s plan to give him that IQ. lol

 Next is Jon. Jon didn’t plan to have a disability. He has always wanted to be treated just like everyone else. There has been some grief that we have all shared to realize that Jon is not able to go on to college and move up in life the way his sibblings have. Often he has had the attitude that since he is not going to college, he is a nobody.

  Well NO ONE is a NOBODY. Everyone is put on this planet for some reason. Not all of my kids have gone to college and it doesn’t always drive a persons success when you do.

 Jon is becoming much more accepting of his limitations, even though I never limit my kids. The sky is the limit and God can do anything. It is nice to see him becoming more at peace with allowing us to help him though.

  Desi is our youngest and she is a senior this year. She does want to go to college, but we are trying to help her do it in a manner that she won’t get overwhelmed. So we think doing a two year college in four years would be better.  Having FASD affects everyone different. She gets stressed really easily and when she does, she can be prone to melt downs.

  Yes I can look over all my kids and find so much beauty and joy. Each is walking their own path and through the Lord, they are on a path of joy and success.

  We can’t look at anything as a negative in life. God can use it all as a positive.

Nothing worth fighting for is going to be easy, but every one of my kids are a blessing and have all been worth fighting for.

The battle is still on too. I am there with each of them as they walk through life and learn lessons that I once had to learn. I like to think that my ability to share with them how it was for me and the wisdom that God has given to me, spares them some of the pain and agony of the trials.

 I have heard it said that sometimes we keep going around a mountain until we get the victory. When we finally give up, then God can work and make our situation a blessing and success. I am always hoping that what I share with my kids will keep them out of that wilderness and into the promised land, faster then it took me.

 I have a dream and a vision for my future too. I am believing God for a farm and some land. I want a second home on that land for my disabled kids to live in. That way I can monitor medications and what is going on for them in their lives, but allow them some independence to have their own place.

 I want my own home too. 31 years of raising kids and I would love to have a kitchen back. One that isn’t constantly full of dirty dishes and left out items. One that allows me to do some cooking for wholistic eating and enjoy the process. Every woman loves her kitchen, but I haven’t felt that my kitchen has been mine for many years now.

 I believe God is going to make that happen for all of us.

I want to raise our own beef cattle on that farm. I love gardening and I adore our chickens. If I have a farm, more chickens can join them. We can keep a rooster. My daughters want horses. They can live on our farm and I will get to enjoy them.

 God has given me the desires of my heart all my life. He has always blessed me over and above what I could dare ask or think. I know that this farm and second home for the kids will happen. I have declared it and now I wait on God to bring it forth. He will. You all will rejoice with us when it happens. It is the promised land. The land right before Heaven. Heaven will certainly be a glorious place, but God gave us this beautiful earth to enjoy and I love it. I can’t wait for my beautiful land with trees, woods and places for animals to roam. Our promised land will be a land where quiet can take place. Praise God for it. Praise God for my children. I love them all so much.

kidznlildogz@aol.com

Mother burn out? They shall run and not be weary…….Walk and not faint……

I know you are all dealing. It seems a day doesn’t go by without some sort of crazyness. Jon was kicked out of a class today for good. They are just taking it out of his schedule. He is too disruptive to that class and it is an elective. He doesn’t need that credit to graduate. Sad, that I had to tell him that he got booted out because he disrupts the classroom and he tells me he did nothing wrong. He doesn’t notice what he does.
My bike is missing, we think he got it stolen in the night. He says he didn’t have anything to do with it. Well our garage is always locked. The one time it was open for a bit, someone climbed over the piles, past two other bikes and took it off the ceiling where it was hanging and then made out with it from our garage. All this and the dogs didn’t bark?  I don’t think so, but  I will have to wait until Heaven to know the truth.

 Last night Jon told me he wanted to get his tatoo touched up. He said it would not cost anything. Why wasn’t my brain clued in to what was really happening? Briana and Ryan spent their gas to come pick him up for a free tatoo? No. He came home with a new tatoo and now he owes Ryan 30 dollars. I had specifically told Bri that he could not get anything that he was going to owe for. She assured me that he wasn’t.  He did it quite deceptively. Got what he wanted after manipulating the situation to make me believe that he was not getting one. So now he doesn’t get any money for his allowance because since I told him not to do this, I won’t allow him to pay Ryan. Ryan knew that he wasn’t supposed to do this.

Sadly, he is using Jon for money. Jon will gladly be used too. That is how he is. He does not notice when people are taking advantage of him. I have seen it often. He will just give his money to people and trust everyone.

 Desi is having her fits. You can’t ever tell her that dirty little word “NO”. 

Last week Desi had a fit when she could not see her boyfriend after coming home from work sick. She went nuts and screamed THREE times at the top of her lungs. I was wondering which neighbor would call the police first, when they thought someone was being abused in our house. I stood there calmly watching her just bellow out these screams. You don’t say no to Desi. It is her way, or a tantrum.

Tonight she informed me that she requested not to work on Friday or Saturdays at her FAST FOOD JOB. Hmmmm I am thinking that she probably won’t be working much then as those are the nights when teenagers are needed. But you know “I don’t understand her” and I am “not fair” when I tell her that she can only work two school nights as it will stress her out for school.

So after she gets done with her crazy yelling at me etc. I am tired. It has been a long week, month, year, life, and I tell her go ahead and work all she wants on school nights, but you plan to move out when you turn 18 as I am done with your little tantrums when someone tells you no. 

It is just me. 31 years of raising kids. Nine of them*children*. These last two have FASD. I think I will move next summer and not give a forwarding address. 🙂
Just “sayin”…………………

Parent burn out in parents raising FASD kids is really high. I just read an article today about a family who adopted a child from Russia. He had FASD and he died after banging his head on a stove. He had a habit of head banging. Now the parents are charged with manslaughter, lost their daughter, their home, their jobs. They lost all because a child had brain damage from alcohol in utero. They lost it all because they wanted to do right trying to help a child. It made me sad.

 I know of other families who have been highly persecuted for fostering and adopting when these children are angry and turn on them. They call them abusers to get even.

  I know mom’s who have tried everything with their FASD kids and still don’t have the answers.

Whether you are a birth mom of a child with FASD or an adoptive mom, you are in a battle that isn’t going to go away. Brain damage doesn’t get better unless God makes a miracle. We never stop believing for those miracles, but every day we need to be prepared for the battle.

 Sometimes though, we get weary. Sometimes I think we just need some TLC ourselves, but there isn’t anyone to give it.

They say ” this too shall pass”, but with these kids, it seems ” this too shall stay”………………….

They that wait upon the Lord shall renew their strength. They shall run and not be weary, they shall walk and not faint. Isaiah 30:41

I am waiting God.  I am waiting on you.  I need to run and not be weary. To walk and not faint. To be able to deal daily and not get burn out. To have peace in the midst of all storms…………to just rest…………Thank you.

kidznlildogz@aol.com

Don’t Negotiate with Terrorists

Someone told me today that Bill Cosby made this statement about parenting, lol.

I am sure you have all seen the commercials about the CD/s, The Total Transformation?

Well I wanted to get my hands on them, but I could not afford to pay for them.

However I always wanted to know what those three little words were, that would stop kids from arguing. James Lehman is the doctor who created these and he has since died, but his wife has continued his legacy.

So I prayed about it. I thought maybe someone would loan me the CD’s or something.

Then one day I was at the BMV with Matthew, to get his license.

I was standing in line, when our turn came We got papers etc. and I had one more question for the girl behind the counter. She had gone on to the next person. I tried to ask her anyway, and she looked firmly at me and said “I’m so done!”

I was stumped. I shut right up. I stood there in shock, embarrassed and turned to leave. I wasn’t being rude to her or anything.

Then it hit me. She had used three little words that literally  SHUT ME UP!.

That was a HUGE blessing to me. I was like, PRAISE GOD for giving me this answer. He is so faithful to answer even the smallest of prayers.

After that, I used those words and similar words with my kids.

“We are done arguing” and I walk away.

If I won’t argue with them, then there is no one to argue with.

It has changed my whole household and they don’t argue as much now. What a relief that is after years and years of kids that had to have the last word. Jon is diagnosed ODD, which is opositional and defiant disorder. He LOVES to argue. Not me. I like peace.

Now we have it most of the time. Well until they do something unexpected, lol.

This would work in relationships too. Why do people have to have the last word? Why do we have to be right? It really isn’t worth it and with kids that have trouble understanding, they certainly are not getting it in a shouting match.

Well yesterday I was in an IEP meeting for Jon. There was the IEP teacher and the principal. When we were almost done, I was asking the principal about education for girls in the school that are pregnant. I stated that I did not see even a poster hanging up about not drinking during pregnancy.

He told me that I could get him posters and he would put them up.

He told me that I could contact the health teacher with education.

Then he shared with me that this little lesson about not arguing with the kids that I have educated Jon’s teachers about, has spread so wide in the system, that they are now teaching all the teachers at school to handle kids this way.

Hall monitors are having success with kids in the hall, simply because they will not argue with the kids.

WOW after YEARS and YEARS of trying to make a difference for my kids, this blew my mind that this little idea, that God showed me, and I showed Jon’s teachers, went that far in the school.

I felt just so blessed to know that. All along, my purpose in telling the teachers about this was to keep us from a lawsuit, lol. If teachers argue with Jon, he gets heated and would have a risk of doing something dangerous. He once had a felon on him for slamming a door on a teacher, but praise God charges were eventually dropped. We just needed to keep peace in the school for him though.

So now I find out that all the work to help Jon, has spread to all the kids in the school. Wow, I just praise God for that. Us parents should be given these keys to parenting in birthing classes, lol.  As Bill Cosby says, Don’t negotiate with terrorists!! 🙂

So many of us parents of FASD kids, all want this message to get out. We want services for our kids. We want diagnosis. We want the world to talk about it more, so that children are spared.

After dealing with schools since Jon was in kindergarten, year after year over the issues that they had with him in school, this little nugget that the principal shared with me, gave me so much hope. People are listening. If they are hearing this, then eventually they will hear more. Don’t stop talking Terry. Keep at it. The world needs to hear. Kids are suffering.

 We have been through so much over the years. Teachers haven’t always liked Jon so well, because of his impulsive, not stop talking, and argumentive behaviors.

As parents, we didn’t know why he acted that way until he was almost in high school. Then it wasn’t a doctor that pointed it out, it was my researching as much as possible about FASD, until I just knew, that I knew, my two youngest had it.

 I mean it isn’t such a secret, is it? Desi was born crack positive. That should have been a clue to me. Most drug addicts drink also. In fact we knew her birth mom and watched her live out her prostitution life style and yes we saw her drinking.

  I was the uneducated though. I didn’t know enough about it. Why? Because the world is silent about it.

  Now I am educating the doctors, teachers, other people, trying to get the word out about it. So many children are suffering in the school system and the prison system, because our world has this problem under cover.

Joyce Meyers has stated that she is the MOUTH in the body of Christ. Well I guess I am another one.

While I am left on this earth, I won’t shut up about this.  He is with me and He is opening those doors.

I just praise him for little miracles. Kids are counting on us. Kids are suffering and often no one knows.

Someone has to speak up. Their silent suffering cries to be spoken out.

 They are not bad kids. They are brain damaged and they go through life being treated as though they are bad kids.

Imagine if that was you? Wouldn’t you want someone to speak out, so you could get help? God helps the helpless. These kids are the helpless, but He uses US to do HIS work. I am a mouth in the body of Christ and God is filling it. The children with fetal alcohol syndrome’s heartache, calls me. I must go.  Lead me Lord. Thank you. I hear their cries……………….

I like Quiet

Wow, a week and a half and peace reigns. I love that. I relish every day that I can get without great stress. Of course there are little things that happen, like today Jon skipped football practice to go help someone mow their lawn. The promise of money lured him. It does concern me that because it is a bit of a stranger, that he won’t get any money for his work.

We had to change some things about football now to make sure he goes there.

It is hard to have to watch an 18 year old as closely as a young child, but this is how it has to be to keep Jon safe. I didn’t dream it would end up like this.

When we started adopting our children, we thought that we would be the best parents that we could be and they would all go out successfully.  Isn’t that every parent’s dream for their child?

I am learning that success means a lot of different things, then we thought it would mean. It does not always mean a spouse, two kids, a college education, great job and that white picket fenced house.  The all American dream?

Sometimes it means just doing your best each day, no matter where you are at, and even if you can’t go to college, or you can’t get that dream job etc. I believe it means relying solely on the Lord for your provisions in life.  AND as far as God is concerned, it means becoming more like HIM!

Yes we seek material things and He seeks our hearts. I am telling my kids that they have a purpose in God’s plan and it does not matter where they are at here on earth. He will still be using them to fulfill HIS plans down here. All he wants is our hearts. He wants us to love HIM. He wants us to communicate with Him. He wants to show us each day how to live it. He wants us free from fears and anxiety. He wants us to trust Him. Every challenge that hits us is an opportunity to learn more how to trust Him and lean on Him.

 The more I grow in that, the more peaceful and joyful my life is these days.

I have gone through a period of grieving when we fully realized that Jon would need help for possibly his whole life. At this point, of course, we don’t know if that will be us forever, or not. For now, yes though. I grieved that he wouldn’t be fulfilling that American dream of college and a good job. I grieved that he would need continuous help from us and retirement is not happening. It was hard to accept.

Jon grieved over this too when his brother, Matty, was all about going to college and Jon knew he wasn’t. He felt like he had no future, no hope.

But the closer I grow in God, the more I accept His plans and He says that He knows the plans He has for us, plans for Good and not for evil, plans to give us an expected end.

So I let go of grief and I trust. I take life one day at a time and I deal with each situation as it arises. I am not trusting perfectly yet. I still get upset when Jon does something that blows me away and steps out of our safety zone. I still have a hard time accepting that his brain just does not function on a normal level and when he does something he shouldn’t, I am still trying to strike that match in his head that will blaze a fire of knowledge. It seems so often that only a spark gets in and then dies out. So yes, I am still not fully letting myself just accept that this is the way it is. However in reality, gosh, it might not be forever. Who am I to limit my son? God can do a miracle with him and we might see Jon come out of this and walk in independence one day. With God, the sky is always the limit. He is able to do abundantly over and above all that we can dare think or ask.

So why not have hope? Why not live life as though we have to do all this for Jon now, but believe that God can light that spark and bring that blaze into Jon’s brain. To believe that all those missfiring areas up there, might one day start firing the way he was intended to, if his birth mom had not drank alcohol, can keep me reaching for the stars and never giving up on Jon.

He needs that and we need that. So I am going to continue to praise God for my children. All of them need His help daily and so do Mike and I. We are all helpless without Him.

Praise His Name. God bless my children. God bless you Megan and Dan and little Joshua. God bless you Jacob, Nathan, Matthew, Caleb and Jon. God bless you Anna and Tommy. God bless you Briana and Jayden and our youngest, Desi, but certainly not the shortest, lol. God bless you my loving husband, Mike. May we all see God’s full miracles in our life each day. May we walk in HIS plans and purpose for us and not look at the exterior things for success in life. May our success be over coming each day’s issues, pains, challenges etc. with the Lord’s miracles. I love you all.

kidznlildogz@aol.com

Flash cards at 18?

Does that sound really strange? Well it might, but I believe it is what the Lord has shown me to use for my son.

Jon is 18, but he hasn’t matured a whole lot since he was about 13 or so. He seems stuck. That is what FASD does to a person. Their brain is damaged and they can’t seem to get things like a normal brain would. I mean GET THEM. Did you hear me? Of course you did because you GET THINGS!  Not Jonny, he will appear to get things. You will think he “got it”. But then one day along the way, he will repeat the same wrong act that you thought he, got, AGAIN!

Now I know we all have things that we do, that are repetitive sins. None of us is perfect. We all struggle in areas. But you would think something that might have gotten us into serious trouble, might make an impact on our brains and we would not do it again.  I mean if you put your hand on a hot stove, get burned, suffer for days, I am betting that you look to see if a burner is on from now on.

With Jon we cannot assume because he has suffered great consequences, that he has actually learned from something that he did wrong. He might not have. His brain doesn’t seem to keep those things in memory. He forgets everything.

Have you ever walked into a room and wondered why you went there? Does that drive you crazy? It sure does me. I HATE IT when I forget what I am doing. I hate it when I can’t remember something that I was just thinking about. I love my memory. I treasure the fact that my memory works pretty good and I can keep my life organized and things done. I love to remember appointments. I never want to disappoint someone that I promised something to. Memory is very important to me.

Can you imagine what it would be like to live in a world where you can’t remember anything from one minute to the next? Imagine being who we are with good memories one day and living in that world the next? I would go crazy. It would scare me.

Not Jonny though. It doesn’t scare him. He has never known it any different. He was born that way. He can’t remember that he can’t remember.

So here was a biggie this summer. Jon had a bike that wasn’t in good shape. One day I looked out the window and saw a familiar bike out back. IT WAS MINE. I went downstairs and asked Jon, why was MY BIKE out back, where his bike usually was. He “borrowed it”. He took it out of the garage and just used it without my permission.

Well my bike was fairly new and I treasured owning this bike as it is key to helping me get myself in shape. I know I have a long way to go to get into shape, but this bike came to me in a very blessed way and I really appreciate it. I want to keep it nice and be able to use it.

Well Jon doesn’t use anything nicely. He could have gotten my bike stolen in one day, as he had no lock for it. I had no idea where my bike had traveled that day. I was so upset knowing that he carelessly just “stole” my bike and went around with it that day.

I explained to him that he had stolen a bike basically, as he didn’t have permission to ride that bike. It was no different then taking a bike from someone elses house, since it was not his bike and he had not asked me to ride it. I even imposed a fine on him that night. I wanted the message to be very clear that taking someone elses bike without asking, was a CRIME!

I knew that I had to be very strong with him on this, as Jon has a history of taking things that don’t belong to him. I mean if it had been the first time ever taking someone’s something, I would have regarded this as a mistake, but not Jon, he took people’s stuff without regard often. I am like, isn’t he ever going to get the message that this is WRONG?

So I made a really big deal about this. Yes I know kids with FASD are prone to stealing. But my kid is going to learn and that is that.

SO I THOUGHT!

Well it should have been over. Yes it should have been. But not a month later and one day I looked out my window and low and behold, my bike was in the back yard again.  I could not believe it! I ran downstairs and jumped onto Jon with “What are you doing with my bike again?”
Oh he was going to ask me if he could borrow it.

I am like, that bike was hanging on a peg, high in the garage, where no one would touch it and you got it down and took it again, AFTER YOU ALREADY GOT FINED FOR DOING SO, just a few weeks ago???

Oh he forgot. ARE YOU KIDDING? How could you forget that? I was in shock. I made him hang the bike back up. It took me a while to get over that and I thought, surely Jon now knows that he can’t  take my bike. SURELY!

NOT!!!!!!  Well almost not. Just yesterday, Jon took off early for football. I sent Jake after him as he is not to be at the school until it is time for football and this was an hour and a half early.  So Jake brought him back and in then I find out that not only did he leave early to hang out at school, but HE TOOK JACOB’S bike, which was my old bike!!  I mean, He was told not to touch bikes in our garage when he took my bike and he is now on another bike from our garage????????  Well I about flipped out. I scolded him and sent him to his room to wait until it was time for football.

I kept stewing about that and it wasn’t until night time that I realized why I was so upset. It wasn’t that he took Jacob’s bike. It was that Jonny just didn’t seem to be learning that he could not touch our bikes. Why wasn’t he learning? After big punishments, he just did not get it.

It frustrated me and it scared me all in one. Is his brain that bad???

YES IT IS! I have to accept that my son is getting older, but not growing up like he should because his poor brain is damaged and his memory does not work. It just doesn’t.

So I started praying. “Lord, how can I help Jon?” We just can’t let him go on repeating the same dangerous things in life. I mean he has to learn that he can’t meet with girls in the night that are younger then him.  He has to learn not to take people’s bikes, which by the way, mine wasn’t the only bike he took this summer. Bikes came from near and wide and landed in my back yard. They always belonged to a friend of his blah blah…..but I always wondered if some little boy was missing his bike and it really bothered me.

We even bought Jon a brand new bike. Well Jon paid for it, but we took him to get it and we thought that would solve things, but in less then a month, his bike is missing. We still don’t really know where his bike is. He says his friend took it to his aunts house and about every day, I have asked him to get the address of where his bike is, but he keeps forgetting to do that. sigh….

So now I realize that it is not just the bikes here, that have me upset. It is that Jon isn’t registering that this is wrong and keeping it in his registry.

“Lord, how can I help Jon?  There has to be a way to get his brain to register.”

Then I could see this idea in my mind. FLASH CARDS! Yes. The same way you teach kids to read. I am going to make typed pages of things that Jon needs to learn and put them inside page protectors. Then Jon and I are going to play this game daily. He will read the flash cards and we will discuss them. Ten minutes a day with the flash cards.

Hospitals do stuff like this all the time when they are working to help an accident victim relearn how to do things if  they have brain damage. Sometimes people have to learn all over how to talk, walk, read, everything. It can be done though. The damaged brain can recover.

I know this is pioneering work with FASD, but I have to try. I have to find out if Jon’s memory can be reworked in his brain by using flash cards daily.

If this works, we can share our idea with other families who are struggling with FASD. Maybe we can help other children. I don’t know yet. All I know right now is that my son needs help and this is what I feel the Lord has shown me to do for him.  Jon deserves to have some working memory. Let’s see if this is possible.

I already have started. I don’t have the cards made yet, but today I went over things with him on two occasions. I am like, Jon repeat after me. I can’t ride any of mom’s bikes. Jon says, I can’t ride any of mom’s bikes.

Good Jonny, now say, I can’t meet girls in the middle of the night………….Jon says, I can’t meet girls in the middle of the night. Good Jonny……He didn’t mind doing that. He thought it was fun and good attention for him. lol.

Ok so it is. Flash cards for Jon….Let’s see if we can train his brain to have working memory……Praise God for creative ideas.

kidznlildogz@aol.com

Oreo cookie family

Over the years often I get asked how do we handle the mixed race issue. We are Caucasian, our four birth kids are also and all of our five adopted children are black or mixed.

I am amazed at how our family has done over the years and the fact that we have not encountered many issues at all, with this fact.

When the children were babies, I was a power house of energy. (would like that back God?).  Anyway, I used to gather up all my little chickens and put them in the van and we would go grocery shopping together.

Megan would push a cart with all five of the little ones in it and I would push one that would gather up food. My other three birth kids usually hung off the sides of my cart. We were a great team, Megan and I. I would usually send Anna, Nate or Jake fishing isles for things we needed and they would run around, get them and come back to hang on my cart.

Well The comical part was the people. It is so funny how people’s pupils can grow quickly when they look at you with shock. Secretly I guess I enjoyed shocking them all just for fun. Let them all guess if I was a bad girl who had too many partners, lived on welfare, etc. or if I was a foster mom. Rarely did anyone get that we actually adopted all these children. Most asked me if I fostered, if they dared to ask.

I always held my head up and just concentrated on the task at hand. I guess if I had an “Alice” at home, the little ones would have stayed home and I could probably have done this so much easier.  I never minded taking my kids places with me though. I didn’t have any race issues in my bones, or God wouldn’t have asked us to do this.

It was others that might have had a problem. The truth is that we rarely ran into any real problems. When I would go to the school to see a teacher for my kids, sometimes my kids friends would say stuff like “Is that your mom?” and my kids always proudly smiled and said “YES!”.

They all were proud and happy that I was their mommy. No one hid shamefully because they were a different color then us. They all knew that their mom loved them so much and that is all that counts.

If my kids were ever persecuted for this, they didn’t tell me about it and they usually all told me everything, so I just don’t think it happened.

Today it is interesting who they date. Caleb is mixed and he always has dated caucasion girls.

Bri is black and she has dated two asian boys.  She is still with Ryan now and he is asian.

Megan married in her race. Anna married a part hispanic guy.  Dan and Tommy are loved by all in our family.

Nate, our birth son, is single but often dates black girls.

Matt dates all races and Desi is currently dating a black gentleman named Max.

I just don’t think we are looking at race ourselves. We see people. I know all about racial prejudice. I am not unaware, but do you realize that all kids grow up about the same, no matter what their skin color is? They all have tantrums at age two. They all have tantrums again as teens and they all have beautiful purpose on this earth. God created each of us the same on the inside. It is called Human.

I always told the kids that we are not really black and white. We are all brown, just different shades of brown.

That is the type of Oreo we are, brown on the outside and human on the inside. We all love each other so much.

When we get together as a family, it is so much fun. Gosh, I am glad Mike and I listened to God and didn’t worry about what the world would think. Each child that is in our family was hand picked by HIM.  No mistakes at the Quinns.

kidznlildogz@aol.com

Gratitude and Just “Chillen”

This afternoon I received a call from the mom of the girl, that Jon visited in the night.  The first thing she said was “I am sorry”.  I can tell you that coming from the experience that she had this weekend, finding a naked black boy in her child’s room, in the night, this took alot. I didn’t blame her one bit for being as upset as she was.

She also took full responsibility for her daughter’s part in it all too. I love to know parents like that.  Our kids are better off when we make them learn from what they did, rather then blaming everyone else. These two kids were both wrong. BUT, Jon was certainly the more responsible one in this event. Too bad though that in Jon’s mind, he can’t see it that way. He  thinks like a little boy.  He doesn’t recognize how dangerous all this was. He says he was just “chillen”. Well son, Chillen can get you little butt in jail…………….

Now there is going to be a restraining order against him. He is not to go anywhere near this little girl who is only 15. I think this will be a very good thing. He will now know that Chillen can get the police on your case and the law is bigger then he is. Maybe it will save him from making a mistake like this again, that could be worse then chillen.

Sex is everywhere. We can’t turn on the TV without seeing it. Our kids are getting the message that sex is a normal thing to do with anyone.

Today it is not abnormal to walk through a school and see 12 to 20 girls in the school at one time, carrying babies. They think their little tummies are so cute. Most of the boys involved don’t stay involved and these poor parents are often stuck raising these children.

These same teenage girls are often out partying on weekends, totally oblivious to what can be happening to the life of their unborn child.

I want so badly to be able to be a voice to these teens.  It will take some real harsh reality to get through to them though. I don’t think telling a pregnant teen that alcohol can brain damage their baby, will mean much.  Too bad we can’t make a movie staring FASD kids.  It would probably not be a big seller, but it could sure carry a message.

I am so grateful to the mom that called me today. I am grateful that my son did not end up with charges of breaking and entering and statutory rape. This weekend was a night mare, but now I can feel the healing breeze of God blowing over it.

We have set up a whole new set of rules for Jon. He is no longer a renter here, but living as a child under restriction. One of his teachers offered to get us set up with MRDD today. I didn’t even know he could qualify for that. I am so excited that God is sending some help. We need it so badly. Praising God for small miracles today. I am grateful.

kidznlildogz@aol.com

He DID WHAT?

My phone rings at 4 am today. Jon is supposed to be at the night shift at Mcdonalds. I am thinking he is probably calling for a pickup ride. He is supposed to call his dad, so I am a little annoyed that he called me and woke me up. Then I notice it is another phone number. My brain works quick and I figure he is using a friends phone.

 “Hello”. …….the caller on the other end is not my son. She states her name and asks me if I have a son. I say yes, not realizing to tell her that I have five sons. I just knew it was about Jon.  The caller is calling in the middle of the night and Jon is not home.

 THen she says “Well he is about to be arrested for breaking and entering and statutory rape with my daughter!”  She is quite angry. I am in shock!!!

I mean someone could have hit me over the head with a hammer and I might have thought it was all a part of the same thing. I felt like someone might have died. Where was I?  Did I just hear that my son’s life was over?

She wanted me to come get him but when she asked his age and I told her 18, that is when she said, never mind then he is going to be arrested for blah blah blah…………..

I walked around dazed for a bit, then had this huge attack with my stomach. As I sat there, I felt this peace come from no where and the Lord was saying it was going to be ok.

 I didn’t feel any better, I just felt that. I had nothing to base it on. I didn’t even know the details of the crime yet.

So I tried to pray and praise the Lord for working this out, but it was feeble at best. I was just in shock.

I did have the presence of mind to get my adrenal meds under my tongue so that I didn’t end up sick and in the hospital too. Shock is very dangerous for someone with adrenal insufficiency. 

So I collect myself enough and decide to call this lady back and find out more. I did and I explain that my son has Fetal alcohol syndrome and that he is adopted. He is in special ed at school.

“Well He knows right from wrong, doesn’t he?”

Hmmm I wasn’t sure how to answer that, as in reality he doesn’t in some ways.

Some how my appeal softened her a bit, I felt.

Then Jon called me. He told me that it was all stupid. Nothing was going to happen. He was just visiting her. She invited him over. They had not had sex. He did not break in. etc. The cops were telling him that there was nothing they could do.

I could hardly believe all that because the words of the mom are ringing in my ears of the charges. She had also told me that she was a prosecutor.So he picked the wrong house to do this in.

I gather up strength to look up the street he was on, in mapqueust and ask Mike if he will take me over there. Mike was fully in on this. He was taking charge. We drive over and there are all those lights flashing from the police vehicle. We can hardly see where to park, it was so bright.

 The son that I love dearly is sitting in that cop car and I don’t yet know the outcome. In that moment I wanted to protect him. I wanted to shout to the world, my son is not ok. Please don’t put him in Jail. It will kill him. You can’t do that to him. He can’t survive in jail any more then he can take care of himself.

I am now learning the story from the officers. The girl invited him in, as mom was out of town. The girl is 15, and Jon is 18. BUT, a new law is in place and now 15 is the age of consent. ( truthfully that law should have been a long time ago as normal 18 year old kids and 15 year olds are just kids.

The officer asks one of the mom’s, they are a couple, if she wants to talk to me. I try to go over and apologize, but the other mom comes out and lights into me with all four barrels. She is going to be putting a restraining order on my son blah blah and she starts coming at me.

 The officers put a stop to that and my husband told me to stop talking and get out of there.

Then he almost said something to her, but held his tongue. I then tell him to stay quiet.

So now Jon is loaded into our car and the bike he “borrowed” for the night is placed in the trunk.

We shake the officers hands and thank them for everything.

Did that just happen? Did I go from hell and thinking my son’s life was over, to simply going home with him?

Ok the real story is that my son skipped work, hung out with a friend, and connected with this girl on the phone and she invited him over, let him in and they were caught necking. Supposedly no sex took place YET.

She consented and with the new law, Jon had not broke into their house, the officers could do nothing about it with Jon.

I have had three hours of sleep and the night before only a few also because Desi had Max over without my consent, and his dad didn’t come and pick him up until 1:30 in the morning.

That will be Max’s last evening at our house, ever.

This will be Jon’s last time of freedom while he lives at home and is completing high school. He is now on house arrest. I took his phone. We sent him to bed so that we can all discuss this after we are rested.

 WE are not sure that Jon still has a job, as he called off work.

Oh Jon, yes your life is not going to be the same any more. You are no longer an 18 year old living at home with a rental contract. Now you live at the Quinn halfway house and there will be rules again, lots of them.

 You are going to be dealt with in a much different manner or you will simply not be here. It is your choice. If you don’t stay here with us, the chances are good that the next call, could be real. WE can’t help you if that happens.

You will no longer be living at home though and roaming the streets at night. I think it is time you were told what you are really dealing with. I haven’t told you that you are borderline MRDD. I didn’t want to limit you. I didn’t want to discourage you. BUt maybe you need to know that so you will let us help you.  You will probably always need help and you need to be willing to allow that.

You can’t keep yourself safe Jon. FASD took that from you.

Mike says that maybe generation X is all FASD damaged and that is why we have  a whole generation of lazy , back talking, law breaking kids that won’t keep jobs.  I think that is a little extreme thinking, but who knows. Alcohol is treated with such casual thought. No biggie. Everyone drinks. People often don’t even know that they are pregnant and are drinking.

 When it damages kids as much as it has, Jon and Desi, it should be taken far more serious then any crime that is out there. It cripples people for life. It takes away their choice to be fully functioning adults. It is just wrong. SO WRONG!!

kidznlildogz@aol.com

Just another day

It is 9:23 in the morning. I have already had several phone calls from the school this morning.

Desi went to school in leggins that are not allowed unless there is a dress or long shirt over them. She tells me that the office won’t allow her to go get the pants that are in her locker.

I finally connect with the school and Desi never told them that there were pants in her locker.

Desi just wants me to think she is being held hostage at the office, so that I will be upset with the school on her behalf. She is good at that type of manipulation.

Next call was from attendance. School has been in session for one and a half weeks. Jon has three lates already.

Jon cannot manage time for anything and may not even be able to tell you why he was late.

We are going to have a meeting for his IEP to discuss what discipline to give him this year for this, as there cannot be home discipline any more. Jon has reached 18 and now has a contract with us to live at home, pay rent and be his own boss, etc.

We are going to put something in place that will benefit everyone, as Jon won’t really learn how to manage time, no matter what the consequences. Do I limit him when I say that? I don’t mean to. I am just trying to accept reality of living with a son who has FASD who may never be able to take care of himself properly. 

Sigh…..this is what life is for these kids. They can’t manage time, money, their things etc. They don’t tell the truth. We are all ingrained to believe that lying is a sin. If a kids lies, they are a child who was not raised right. These kids lie to protect themselves on a very animal level. They lie to get what they want. They lie because their conscience section of the brain has holes in it.  They have brain damage and can’t feel guilt about stuff like you and I can. We never give up trying to help them learn to be honest. We hope that some how we can make some routes through that brain that will work right.

I raised 7 kids before these two. They all tried lying out, but every one of them found a place in this world that gave them a conscience as they grew. They can cope with life like normal individuals and have no real reasons to lie. Most of them love the Lord and wouldn’t consider lying, especially to their mom. 🙂

FASD is definitely a different road to tread on. We have to have compassion and understanding, or we will be in constant judgement. We cannot treat them the same, but our world doesn’t understand it that way, so for us parents it is a double whammy. We deal with our kids who don’t get it, can’t be honest, etc. and we deal with the world who also doesn’t get it and expects our kids to be up to par and “normal”, or they are BAD kids. They don’t see that this child’s choice was removed when birth mom drank alcohol. Sigh. it is painful being a mom sometimes to FASD kids.

It saddens us greatly that our kids will have the same reputation that our politicians have, lol.  They lie to control our country and get what they want.  Maybe they are all brain damaged. 🙂

kidznlildogz@aol.com

Parenting FASD kids

Hello World,

 I am one voice, but I represent many voices with the same heart beat. Children are born daily with FASD and little help is out there for these kids. Many parents that are raising children with FASD are frustrated because they cannot get a diagnosis for their child. Genetics clinics diagnose based on facial characteristics and a baby will only have these characteristics if the mom drinks during a two to three day time period that the face is forming.

 The rest of the pregnancy, when ever a mom drinks, her baby is drinking with her. The baby does not have the ability to detox the alcohol out of it’s system like the mom does, so basically the baby’s brain is pickled in alcohol for that time period.

 Critical brain cells are forming daily that make up every aspect of the brain. While the baby is pickled in alcohol, not only are these cells not forming that should  be, but others that were formed are dying.

 So when that child is born, we will see what is noted as “Swiss Cheese Brain”.  The brain is part of our guts when we are forming and at some point our brain and guts separate, so that is why a brain looks much like a gut in side the head. Babies with FASD will have holes in areas all through out the brain, depending on what parts were forming when the mom picked up that drink.

The brain with holes in it, collapses down on itself and is smaller. The electrical impulses that are meant to go across the brain, have to weave themselves a fresh pattern to make it. Then we will see children who can’t function properly because they literally have brain damage. You don’t grow out of brain damage. It does not change. These kids suffer their whole lives with a host of malfunctions and cognitive delays in many areas. They will often get diagnosed with many secondary mental illnesses, but the main cause is brain damage due to fetal alcohol exposure in utero.

 Mothers are very often not aware of what damage can be happening to their child, as there is a great lack of education in our country about this. There is a huge stigma attached to this problem. How many parents are struggling with their kids issues and don’t realize that it is because they drank while they were pregnant?  Do we condemn these moms? NOT AT ALL! This is a social problem that we are not addressing in our country. The word isn’t getting out there. People are not aware of the seriousness of it and how damaging it can be to a child to drink while pregnant. Often mom’s don’t even know that they are pregnant before it is too late. So no we don’t condemn mom’s who have drank. They need help though. They need help with their children. There is nothing more difficult then raising a child with this disability.  Parents need support. They need clinics and doctors that can diagnose. Treatments cannot fix brain damage but can help some of the symptoms.

 These children are often labeled as troubled, behavior problems, etc. They struggle in school. They often can go into adulthood unable to even care for themselves. Often they need an exterior brain to help them get by in life. They have problems with time management, money management, anger management, impulse control, stealing, lying, and so much more. These kids almost always have ADHD, but not that alone, but coupled with a complex variety of mood disorders, ODD, etc. Teachers struggle in school with these kids and often blame parents for not disciplining their children properly, when in fact, these children may often come from great homes, but have brain damage that affects their behavior.

 We are conditioned to think that if someone lies or steals, they are criminals. These kids lie and steal because they don’t have impulse control. They don’t often have understanding of what belongs to whom. They are brain damaged in the area of the conscience. Isn’t that scary? How can we look at these kids and think they are criminals? However the justice system does and often these are the kids in jail.  Wow is that sad. They could have had a chance if their mom had not drank and their mom could have had a chance not to drink if our country would have put a commercial on TV about this danger. We can’t keep ignoring this. It is a huge problem. More people are affected then we know. Many kids are not even getting a chance.

Well I have two children that have FASD and they are getting a chance. We are fighting for them all the way. Our story will be revealed through my blog. I hope that through my blog, others will get educated, and maybe some babies will be saved. Maybe some children will get help. Maybe some doctors will learn about this disorder and study it. Maybe clinics will pop up all over that can diagnose and treat this.  Maybe some parents will get the support that they need. Maybe some children will get help in school that they need. Maybe some adult persons with FASD, will have support into their future.  Some of these kids are in desperate straights. We can’t continue to shovel this under a bush and pretend that it does not exist. 

I have a yahoo group that supports parents who are raising kids with FASD. You are all welcome to join:

http://health.groups.yahoo.com/group/ParentingFASDKids/

I am also in the process of putting up a website with information about FASD. With that, there will be a link to the beginnings of my book “Raising Hearts” which is only in the foundation stages. I am going to be sharing it publically though. I have a desire to share all the God has done through our miracle family. It is only because of Him, that we can do anything.

Talk to you all soon. Terry Quinn

kidznlildogz@aol.com

Hello world!

Hello, I am mom to nine fabulous children and married to Mike Quinn, my wonderful hubby of almost 32 years.
We have four children by birth and five by adoption.
Our two youngest have Fetal Alcohol Spectrum Disorder and have suffered a lot with it.
I am here to help educate our country on this disorder and hopefully help fulfill a need to help prevent it, bring forth clinics that can diagnose it, create support groups for families that deal with it, find support systems for adults with it and just in general make this issue more known in our country.

Thanks, Terry Quinn

kidznlildogz@aol.com