[Matthew'sMom]

I have looked over the forums and can't seem to locate any information on parents who have adopted a fetal alcohol child. I'm looking for any advice/information on this topic. Our little guy has been with us 3 years. He was 1 month old when he was placed in foster care and is now 3. Our frustration with doctors/Medicaid/help for him is tremendous. Any advice would be helpful. We have been foster parents for over 3 years and have had our share of special needs, but this case has been frustrating because of doctors and dentists and lack of services.

Matthew's Mom
I can't begin to list the foster children, it's been over 30 in a little over 3 years.

[aspenhall]

There was a forum for FAE/FAS but they have been working on re-formatting these boards, so I am unsure where it is now.

[jojobear]

we have a little one, well not so little anymore. he is fetal alcohol among other things.

Just message me if you want to talk.

He has been with us for going on three years, he is now adopted.

Jody

[Ktates]

Try searching the Russia board for some posts by Abdulina - I believe she has several children with FAS/FAE though they are older than yours - there was a thread not too long ago where she discussed getting services for your child but I don't believe she was the one that started the thread..
best of luck

[Lorraine123]

My daughter has FAS. What kind of questions do you have?

[Matthew'sMom]

I meant to introduce myself earlier. I'm new to the board as far as posting, but I've read messages for awhile. He's had Easter Seals therapy, speech therapy for the 3 years. He was in a Mother's Day Out 2 days a week from 9-2. His social skills are a little rough, he doesn't like to nap so I was hearing that he had "ADHD" and while they loved him, he was disruptive. I didn't need to pay for that. He also has major eating issues with food, he is 3-1/2 and weighs 25 lbs. on a good day. He takes medicine to increase his appetite.

His teeth are very uneven and sharp. We are trying to find a dentist to file them so he quits cutting his lip. That's impossible.

We had him tested at an elementary school for early intervention. They said they had Down's Syndrome kids in the class and compared to them, he was at his age level and they wouldn't want the other children to lower his skills. They said that his social skills were immature, but they can only evaluate academically.

I want to do everything I can to help him. I know the major effects of FAS come out during puberty. I'd love to be able to do something about his jaw formation and teeth. I think that has a lot to do with his eating problems.

This is too long-winded. I guess I'm wondering about other adoptive parents' travels down the road of FAS. He is a charmer (of course, no one is a stranger to most FAS children).

Matthew'sMom

[jojobear]

Matthew's mom,

You say he was in a mother's day out program and he was disruptive, has he been evaluated by the school board or early intervention.
My son who has other issues along with fas is in the early learning program in public school. Let me tell you it has been the best for him. There are kids with down's syndrome in there along with him but there are kids with other issues too, speech, ot, pt, behavior. They all get a long just fine and find there own nitch. If you can't get anywhere that way talk to your peditritian if they won't help, find a different ped.

As far as dentist, good luck with that. My son will be four in july and he has his first dentist appointment in June.

My son also has eating issues, he is very impulsive and has pica.

it amazes me what birth parents have put these kids through.

Jody

[aspenhall]

I don't think my dd has FAS...but I wonder since bmom has used drugs and drank. In fact when we were at McD's we walked passed a couple of drunk guys that smelled of alcohol strongly! and her comment (not noticing the men) was Oh, it smells like S's house in here! (with a smile on her face).

What (other than the upper lip thing) is a sign of FAS/FAE

[Barksum]

You can google for FAS/FAE stuff, but be prepared for some outdated ideas no longer supported by the research that's continued to be done over the last decade. For instance, we now know that the brain is not static (unchanging) but can change and "rewire" with training after, say, a stroke or other brain injury. Thus we can theorize that children with brain differences can, with lots of repitition and support, learn to work with their brain differences and strengthen weaker areas in the way their brain processes. I did tons of research just looking on the internet at all the sites I could find that had anything to do with fetal alcohol stuff. Some of the info was extremely depressing. I read one article that said, "Your child will end up incarcerated because these children can never learn due to their lack of understanding cause and effect." Oiks! There's a facer for a parent if ever there was one! Don't buy into it, though. There is alot you can do!

Oh - we've adopted 3 boys, each of whom was prenatally exposed to drugs and alcohol. One exhibits some of the "classic" signs of FASD (the new acronym, which incorporates what used to be classified as FAS/FAE, and stands for Fetal Alcohol Spectrum Disorders) but we've not been able to get a medical dx because we do not have a signed paper from his bio mom stating how much she drank and during which trimesters of pregnancy that she did drink. (Um, don't EVEN get me started on the idiocy of this....)

One really great resource for us was having our son evaluated by an occupational therapist. We paid for this out of pocket with a private therapist because our Early Intervention OT wasn't really equipped to look at our son with the idea of fetal alcohol issues in mind. We have purchased the book "The Out Of Sync Child Has Fun" (I can look up the author if you need it) and have worked with our son's dysfunction of sensory integration issues by working with a sensory diet (nothing to do with food, but an enriching sensory environment). This helped with some of the more troubling and obvious behavioral problems.

We also found the booklet, "Trying Differently Rather Than Harder" to be of great help. The author is Diane Malbin and you can PM me for the web site where it can be purchased. The little book covers some of the processing differences that children with fetal alcohol can have. She also dicusses how the parent and/or teacher might change their mindset and approach to the child once they understand that the child is not doing this TO them or to be obnoxious, but because he experiences the world in a different way and is reacting to how he experiences the world -- which appears to be bizarre or rebellious to the person who doesn't understand what the child is experiencing. (Did you get all that? I'm trying to type fast and think at the same time...a recipe for disaster! LOL)

We've worked hard to understand our son's dysmaturity (he does not function at his chronological age) and to help him not be totally frustrated with his environment and life all day long. One way to help others understand is to explain that he is a square peg and we are working to help him find a square hole. Pounding harder will not make him behave better, nor will he improve if we yell, scream or demand. It is not within his ability to accomodate all of the demands that are normally expected of a 7.5 year old boy. So we change what we can and work with what can't be changed. He still is frustrated by many things, but by teaching him about how to work through his frustration and giving him the mental tools (and repeating and repeating and repeating things over and over and over) he's making progress.

One of the main things that we became aware of in our research is that often children with FASD are misdiagnosed, and their true underlying problem is never addressed. So the FASD child may also have ADD/ADHD, but if you never get beyond that dx and work with the brian differences caused by FASD you won't make much progress with the ADHD dx. Because of the lack of understanding of the root causes of the child's behavior children with FASD are often chronically frustrated, leading to anger problems (ODD) and then on to depression and sometimes suicide.

Not wanting to compound our son's problems we've opted to be somewhat non-traditional in our approach to parenting. We homeschool him and do not have expectations for him to function at his age level. We do have expectations for his behavior to be polite and to sit still and to do things in a proper way, but we expect that at about a 5 yo level and not a 7 yo level. (He wiggles in church, does mazes and dot-to-dots instead of paying attention to what is happening during the service, etc.) We can also tell when he's not doing things that he has the ability to do -- he is a kid and all kids do that! (But this can be varied because children with FASD can "know" something one day and "lose" it by the next day. This has to do with the faulty information retrieval system in their brain.) Since it is difficult for others to understand about the dysmaturity (chronological age vs. actual age) and "losing" knowledge from day to day, we are careful to not have him involved in activities that are structured strictly by age level, or to place him where people don't know him very well.

Sorry to natter on like this. LOL I'd be happy to answer any specific questions, or you can PM me if you wish.

[leastofthese]

try www.fasstar.com

the parents who give info on this site are mostly adoptive parents

truly a wealth of information

these folks also put on workshops--you might check to see if there will be one in your area anytime soon

it would be worth it to travel if you had to to get this information

the workshop (2 days worth) that I went to was awesome and REALLY helped me understand my little girl

[Barksum]

Can there be more to say after my gargantuan post?! Sorry about that! But...here's another web site. There are books, links, ideas for parenting, classes, etc. etc. There are links at the bottom of the home page for "parenting", "homeschooling", and more. http://www.betterendings.org