Posts Tagged ‘FASD’

I know you are all dealing. It seems a day doesn’t go by without some sort of crazyness. Jon was kicked out of a class today for good. They are just taking it out of his schedule. He is too disruptive to that class and it is an elective. He doesn’t need that credit to graduate. Sad, that I had to tell him that he got booted out because he disrupts the classroom and he tells me he did nothing wrong. He doesn’t notice what he does.
My bike is missing, we think he got it stolen in the night. He says he didn’t have anything to do with it. Well our garage is always locked. The one time it was open for a bit, someone climbed over the piles, past two other bikes and took it off the ceiling where it was hanging and then made out with it from our garage. All this and the dogs didn’t bark?  I don’t think so, but  I will have to wait until Heaven to know the truth.

 Last night Jon told me he wanted to get his tatoo touched up. He said it would not cost anything. Why wasn’t my brain clued in to what was really happening? Briana and Ryan spent their gas to come pick him up for a free tatoo? No. He came home with a new tatoo and now he owes Ryan 30 dollars. I had specifically told Bri that he could not get anything that he was going to owe for. She assured me that he wasn’t.  He did it quite deceptively. Got what he wanted after manipulating the situation to make me believe that he was not getting one. So now he doesn’t get any money for his allowance because since I told him not to do this, I won’t allow him to pay Ryan. Ryan knew that he wasn’t supposed to do this.

Sadly, he is using Jon for money. Jon will gladly be used too. That is how he is. He does not notice when people are taking advantage of him. I have seen it often. He will just give his money to people and trust everyone.

 Desi is having her fits. You can’t ever tell her that dirty little word “NO”. 

Last week Desi had a fit when she could not see her boyfriend after coming home from work sick. She went nuts and screamed THREE times at the top of her lungs. I was wondering which neighbor would call the police first, when they thought someone was being abused in our house. I stood there calmly watching her just bellow out these screams. You don’t say no to Desi. It is her way, or a tantrum.

Tonight she informed me that she requested not to work on Friday or Saturdays at her FAST FOOD JOB. Hmmmm I am thinking that she probably won’t be working much then as those are the nights when teenagers are needed. But you know “I don’t understand her” and I am “not fair” when I tell her that she can only work two school nights as it will stress her out for school.

So after she gets done with her crazy yelling at me etc. I am tired. It has been a long week, month, year, life, and I tell her go ahead and work all she wants on school nights, but you plan to move out when you turn 18 as I am done with your little tantrums when someone tells you no. 

It is just me. 31 years of raising kids. Nine of them*children*. These last two have FASD. I think I will move next summer and not give a forwarding address. 🙂
Just “sayin”…………………

Parent burn out in parents raising FASD kids is really high. I just read an article today about a family who adopted a child from Russia. He had FASD and he died after banging his head on a stove. He had a habit of head banging. Now the parents are charged with manslaughter, lost their daughter, their home, their jobs. They lost all because a child had brain damage from alcohol in utero. They lost it all because they wanted to do right trying to help a child. It made me sad.

 I know of other families who have been highly persecuted for fostering and adopting when these children are angry and turn on them. They call them abusers to get even.

  I know mom’s who have tried everything with their FASD kids and still don’t have the answers.

Whether you are a birth mom of a child with FASD or an adoptive mom, you are in a battle that isn’t going to go away. Brain damage doesn’t get better unless God makes a miracle. We never stop believing for those miracles, but every day we need to be prepared for the battle.

 Sometimes though, we get weary. Sometimes I think we just need some TLC ourselves, but there isn’t anyone to give it.

They say ” this too shall pass”, but with these kids, it seems ” this too shall stay”………………….

They that wait upon the Lord shall renew their strength. They shall run and not be weary, they shall walk and not faint. Isaiah 30:41

I am waiting God.  I am waiting on you.  I need to run and not be weary. To walk and not faint. To be able to deal daily and not get burn out. To have peace in the midst of all storms…………to just rest…………Thank you.

Someone told me today that Bill Cosby made this statement about parenting, lol.

I am sure you have all seen the commercials about the CD/s, The Total Transformation?
Well I wanted to get my hands on them, but I could not afford to pay for them.
However I always wanted to know what those three little words were, that would stop kids from arguing. James Lehman is the doctor who created these and he has since died, but his wife has continued his legacy.
So I prayed about it. I thought maybe someone would loan me the CD’s or something.
Then one day I was at the BMV with Matthew, to get his license.
I was standing in line, when our turn came We got papers etc. and I had one more question for the girl behind the counter. She had gone on to the next person. I tried to ask her anyway, and she looked firmly at me and said “I’m so done!”
I was stumped. I shut right up. I stood there in shock, embarrassed and turned to leave. I wasn’t being rude to her or anything.
Then it hit me. She had used three little words that literally  SHUT ME UP!.
That was a HUGE blessing to me. I was like, PRAISE GOD for giving me this answer. He is so faithful to answer even the smallest of prayers.
After that, I used those words and similar words with my kids.
“We are done arguing” and I walk away.
If I won’t argue with them, then there is no one to argue with.
It has changed my whole household and they don’t argue as much now. What a relief that is after years and years of kids that had to have the last word. Jon is diagnosed ODD, which is opositional and defiant disorder. He LOVES to argue. Not me. I like peace.
Now we have it most of the time. Well until they do something unexpected, lol.

This would work in relationships too. Why do people have to have the last word? Why do we have to be right? It really isn’t worth it and with kids that have trouble understanding, they certainly are not getting it in a shouting match.

Well yesterday I was in an IEP meeting for Jon. There was the IEP teacher and the principal. When we were almost done, I was asking the principal about education for girls in the school that are pregnant. I stated that I did not see even a poster hanging up about not drinking during pregnancy.
He told me that I could get him posters and he would put them up.
He told me that I could contact the health teacher with education.
Then he shared with me that this little lesson about not arguing with the kids that I have educated Jon’s teachers about, has spread so wide in the system, that they are now teaching all the teachers at school to handle kids this way.
Hall monitors are having success with kids in the hall, simply because they will not argue with the kids.
WOW after YEARS and YEARS of trying to make a difference for my kids, this blew my mind that this little idea, that God showed me, and I showed Jon’s teachers, went that far in the school.
I felt just so blessed to know that. All along, my purpose in telling the teachers about this was to keep us from a lawsuit, lol. If teachers argue with Jon, he gets heated and would have a risk of doing something dangerous. He once had a felon on him for slamming a door on a teacher, but praise God charges were eventually dropped. We just needed to keep peace in the school for him though.
So now I find out that all the work to help Jon, has spread to all the kids in the school. Wow, I just praise God for that. Us parents should be given these keys to parenting in birthing classes, lol.  As Bill Cosby says, Don’t negotiate with terrorists!! 🙂
So many of us parents of FASD kids, all want this message to get out. We want services for our kids. We want diagnosis. We want the world to talk about it more, so that children are spared.
After dealing with schools since Jon was in kindergarten, year after year over the issues that they had with him in school, this little nugget that the principal shared with me, gave me so much hope. People are listening. If they are hearing this, then eventually they will hear more. Don’t stop talking Terry. Keep at it. The world needs to hear. Kids are suffering.
 We have been through so much over the years. Teachers haven’t always liked Jon so well, because of his impulsive, not stop talking, and argumentive behaviors.
As parents, we didn’t know why he acted that way until he was almost in high school. Then it wasn’t a doctor that pointed it out, it was my researching as much as possible about FASD, until I just knew, that I knew, my two youngest had it.
 I mean it isn’t such a secret, is it? Desi was born crack positive. That should have been a clue to me. Most drug addicts drink also. In fact we knew her birth mom and watched her live out her prostitution life style and yes we saw her drinking.
  I was the uneducated though. I didn’t know enough about it. Why? Because the world is silent about it.
  Now I am educating the doctors, teachers, other people, trying to get the word out about it. So many children are suffering in the school system and the prison system, because our world has this problem under cover.
Joyce Meyers has stated that she is the MOUTH in the body of Christ. Well I guess I am another one.
While I am left on this earth, I won’t shut up about this.  He is with me and He is opening those doors.
I just praise him for little miracles. Kids are counting on us. Kids are suffering and often no one knows.
Someone has to speak up. Their silent suffering cries to be spoken out.
 They are not bad kids. They are brain damaged and they go through life being treated as though they are bad kids.
Imagine if that was you? Wouldn’t you want someone to speak out, so you could get help? God helps the helpless. These kids are the helpless, but He uses US to do HIS work. I am a mouth in the body of Christ and God is filling it. The children with fetal alcohol syndrome’s heartache, calls me. I must go.  Lead me Lord. Thank you. I hear their cries……………….

Flash cards at 18?

Posted: September 10, 2011 in 2011, Flash cards at 18?, Raising Hearts

Does that sound really strange? Well it might, but I believe it is what the Lord has shown me to use for my son.

Jon is 18, but he hasn’t matured a whole lot since he was about 13 or so. He seems stuck. That is what FASD does to a person. Their brain is damaged and they can’t seem to get things like a normal brain would. I mean GET THEM. Did you hear me? Of course you did because you GET THINGS!  Not Jonny, he will appear to get things. You will think he “got it”. But then one day along the way, he will repeat the same wrong act that you thought he, got, AGAIN!

Now I know we all have things that we do, that are repetitive sins. None of us is perfect. We all struggle in areas. But you would think something that might have gotten us into serious trouble, might make an impact on our brains and we would not do it again.  I mean if you put your hand on a hot stove, get burned, suffer for days, I am betting that you look to see if a burner is on from now on.

With Jon we cannot assume because he has suffered great consequences, that he has actually learned from something that he did wrong. He might not have. His brain doesn’t seem to keep those things in memory. He forgets everything.

Have you ever walked into a room and wondered why you went there? Does that drive you crazy? It sure does me. I HATE IT when I forget what I am doing. I hate it when I can’t remember something that I was just thinking about. I love my memory. I treasure the fact that my memory works pretty good and I can keep my life organized and things done. I love to remember appointments. I never want to disappoint someone that I promised something to. Memory is very important to me.

Can you imagine what it would be like to live in a world where you can’t remember anything from one minute to the next? Imagine being who we are with good memories one day and living in that world the next? I would go crazy. It would scare me.

Not Jonny though. It doesn’t scare him. He has never known it any different. He was born that way. He can’t remember that he can’t remember.

So here was a biggie this summer. Jon had a bike that wasn’t in good shape. One day I looked out the window and saw a familiar bike out back. IT WAS MINE. I went downstairs and asked Jon, why was MY BIKE out back, where his bike usually was. He “borrowed it”. He took it out of the garage and just used it without my permission.

Well my bike was fairly new and I treasured owning this bike as it is key to helping me get myself in shape. I know I have a long way to go to get into shape, but this bike came to me in a very blessed way and I really appreciate it. I want to keep it nice and be able to use it.

Well Jon doesn’t use anything nicely. He could have gotten my bike stolen in one day, as he had no lock for it. I had no idea where my bike had traveled that day. I was so upset knowing that he carelessly just “stole” my bike and went around with it that day.

I explained to him that he had stolen a bike basically, as he didn’t have permission to ride that bike. It was no different then taking a bike from someone elses house, since it was not his bike and he had not asked me to ride it. I even imposed a fine on him that night. I wanted the message to be very clear that taking someone elses bike without asking, was a CRIME!

I knew that I had to be very strong with him on this, as Jon has a history of taking things that don’t belong to him. I mean if it had been the first time ever taking someone’s something, I would have regarded this as a mistake, but not Jon, he took people’s stuff without regard often. I am like, isn’t he ever going to get the message that this is WRONG?

So I made a really big deal about this. Yes I know kids with FASD are prone to stealing. But my kid is going to learn and that is that.


Well it should have been over. Yes it should have been. But not a month later and one day I looked out my window and low and behold, my bike was in the back yard again.  I could not believe it! I ran downstairs and jumped onto Jon with “What are you doing with my bike again?”
Oh he was going to ask me if he could borrow it.

I am like, that bike was hanging on a peg, high in the garage, where no one would touch it and you got it down and took it again, AFTER YOU ALREADY GOT FINED FOR DOING SO, just a few weeks ago???

Oh he forgot. ARE YOU KIDDING? How could you forget that? I was in shock. I made him hang the bike back up. It took me a while to get over that and I thought, surely Jon now knows that he can’t  take my bike. SURELY!

NOT!!!!!!  Well almost not. Just yesterday, Jon took off early for football. I sent Jake after him as he is not to be at the school until it is time for football and this was an hour and a half early.  So Jake brought him back and in then I find out that not only did he leave early to hang out at school, but HE TOOK JACOB’S bike, which was my old bike!!  I mean, He was told not to touch bikes in our garage when he took my bike and he is now on another bike from our garage????????  Well I about flipped out. I scolded him and sent him to his room to wait until it was time for football.

I kept stewing about that and it wasn’t until night time that I realized why I was so upset. It wasn’t that he took Jacob’s bike. It was that Jonny just didn’t seem to be learning that he could not touch our bikes. Why wasn’t he learning? After big punishments, he just did not get it.

It frustrated me and it scared me all in one. Is his brain that bad???

YES IT IS! I have to accept that my son is getting older, but not growing up like he should because his poor brain is damaged and his memory does not work. It just doesn’t.

So I started praying. “Lord, how can I help Jon?” We just can’t let him go on repeating the same dangerous things in life. I mean he has to learn that he can’t meet with girls in the night that are younger then him.  He has to learn not to take people’s bikes, which by the way, mine wasn’t the only bike he took this summer. Bikes came from near and wide and landed in my back yard. They always belonged to a friend of his blah blah…..but I always wondered if some little boy was missing his bike and it really bothered me.

We even bought Jon a brand new bike. Well Jon paid for it, but we took him to get it and we thought that would solve things, but in less then a month, his bike is missing. We still don’t really know where his bike is. He says his friend took it to his aunts house and about every day, I have asked him to get the address of where his bike is, but he keeps forgetting to do that. sigh….

So now I realize that it is not just the bikes here, that have me upset. It is that Jon isn’t registering that this is wrong and keeping it in his registry.

“Lord, how can I help Jon?  There has to be a way to get his brain to register.”

Then I could see this idea in my mind. FLASH CARDS! Yes. The same way you teach kids to read. I am going to make typed pages of things that Jon needs to learn and put them inside page protectors. Then Jon and I are going to play this game daily. He will read the flash cards and we will discuss them. Ten minutes a day with the flash cards.

Hospitals do stuff like this all the time when they are working to help an accident victim relearn how to do things if  they have brain damage. Sometimes people have to learn all over how to talk, walk, read, everything. It can be done though. The damaged brain can recover.

I know this is pioneering work with FASD, but I have to try. I have to find out if Jon’s memory can be reworked in his brain by using flash cards daily.

If this works, we can share our idea with other families who are struggling with FASD. Maybe we can help other children. I don’t know yet. All I know right now is that my son needs help and this is what I feel the Lord has shown me to do for him.  Jon deserves to have some working memory. Let’s see if this is possible.

I already have started. I don’t have the cards made yet, but today I went over things with him on two occasions. I am like, Jon repeat after me. I can’t ride any of mom’s bikes. Jon says, I can’t ride any of mom’s bikes.

Good Jonny, now say, I can’t meet girls in the middle of the night………….Jon says, I can’t meet girls in the middle of the night. Good Jonny……He didn’t mind doing that. He thought it was fun and good attention for him. lol.

Ok so it is. Flash cards for Jon….Let’s see if we can train his brain to have working memory……Praise God for creative ideas.

Hello World,

 I am one voice, but I represent many voices with the same heart beat. Children are born daily with FASD and little help is out there for these kids. Many parents that are raising children with FASD are frustrated because they cannot get a diagnosis for their child. Genetics clinics diagnose based on facial characteristics and a baby will only have these characteristics if the mom drinks during a two to three day time period that the face is forming.

 The rest of the pregnancy, when ever a mom drinks, her baby is drinking with her. The baby does not have the ability to detox the alcohol out of it’s system like the mom does, so basically the baby’s brain is pickled in alcohol for that time period.

 Critical brain cells are forming daily that make up every aspect of the brain. While the baby is pickled in alcohol, not only are these cells not forming that should  be, but others that were formed are dying.

 So when that child is born, we will see what is noted as “Swiss Cheese Brain”.  The brain is part of our guts when we are forming and at some point our brain and guts separate, so that is why a brain looks much like a gut in side the head. Babies with FASD will have holes in areas all through out the brain, depending on what parts were forming when the mom picked up that drink.

The brain with holes in it, collapses down on itself and is smaller. The electrical impulses that are meant to go across the brain, have to weave themselves a fresh pattern to make it. Then we will see children who can’t function properly because they literally have brain damage. You don’t grow out of brain damage. It does not change. These kids suffer their whole lives with a host of malfunctions and cognitive delays in many areas. They will often get diagnosed with many secondary mental illnesses, but the main cause is brain damage due to fetal alcohol exposure in utero.

 Mothers are very often not aware of what damage can be happening to their child, as there is a great lack of education in our country about this. There is a huge stigma attached to this problem. How many parents are struggling with their kids issues and don’t realize that it is because they drank while they were pregnant?  Do we condemn these moms? NOT AT ALL! This is a social problem that we are not addressing in our country. The word isn’t getting out there. People are not aware of the seriousness of it and how damaging it can be to a child to drink while pregnant. Often mom’s don’t even know that they are pregnant before it is too late. So no we don’t condemn mom’s who have drank. They need help though. They need help with their children. There is nothing more difficult then raising a child with this disability.  Parents need support. They need clinics and doctors that can diagnose. Treatments cannot fix brain damage but can help some of the symptoms.

 These children are often labeled as troubled, behavior problems, etc. They struggle in school. They often can go into adulthood unable to even care for themselves. Often they need an exterior brain to help them get by in life. They have problems with time management, money management, anger management, impulse control, stealing, lying, and so much more. These kids almost always have ADHD, but not that alone, but coupled with a complex variety of mood disorders, ODD, etc. Teachers struggle in school with these kids and often blame parents for not disciplining their children properly, when in fact, these children may often come from great homes, but have brain damage that affects their behavior.

 We are conditioned to think that if someone lies or steals, they are criminals. These kids lie and steal because they don’t have impulse control. They don’t often have understanding of what belongs to whom. They are brain damaged in the area of the conscience. Isn’t that scary? How can we look at these kids and think they are criminals? However the justice system does and often these are the kids in jail.  Wow is that sad. They could have had a chance if their mom had not drank and their mom could have had a chance not to drink if our country would have put a commercial on TV about this danger. We can’t keep ignoring this. It is a huge problem. More people are affected then we know. Many kids are not even getting a chance.

Well I have two children that have FASD and they are getting a chance. We are fighting for them all the way. Our story will be revealed through my blog. I hope that through my blog, others will get educated, and maybe some babies will be saved. Maybe some children will get help. Maybe some doctors will learn about this disorder and study it. Maybe clinics will pop up all over that can diagnose and treat this.  Maybe some parents will get the support that they need. Maybe some children will get help in school that they need. Maybe some adult persons with FASD, will have support into their future.  Some of these kids are in desperate straights. We can’t continue to shovel this under a bush and pretend that it does not exist. 

I have a yahoo group that supports parents who are raising kids with FASD. You are all welcome to join:

I am also in the process of putting up a website with information about FASD. With that, there will be a link to the beginnings of my book “Raising Hearts” which is only in the foundation stages. I am going to be sharing it publically though. I have a desire to share all the God has done through our miracle family. It is only because of Him, that we can do anything.

Talk to you all soon. Terry Quinn