Archive for the ‘2013’ Category


 

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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


 

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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

 


 

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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/


 

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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


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


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


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


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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


 

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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


 

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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?

Posted: March 27, 2013 in 2013, Raising Hearts

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


 

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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. 


 

 

Anna reading to younger kids

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

Posted: February 14, 2013 in 2013, Raising Hearts, 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


desicheer

 

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

Posted: February 5, 2013 in 2013, Our Blinded World, Raising Hearts

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