[Mom_Of_Many]

We have a 9 year old son we adopted at 2 who has been a real puzzle since Day One, and we have never stopped trying to find out where the "missing link" was. He was first identified as severe ADHD, but we knew that wasn't it. Then he was diagnosed as Bipolar, and the meds work so well, we are sure that this is part of it. His birthmother was a cocaine user and we assume she also didn't say "no" to alcohol. As a toddler, we took him to a renounced center, NAPARE in Illniois, to see if he was FAS/FAE and we were told he wasn't. I dn't really think they were right. Lucas is in third grade now and, although he is a great rote learner, he has an inability to do abstract thinking and is falling futher and further behind in school (we are going to be pushing for Special Ed next year). He is spacey and impulsive and acts much younger than his age, although he is precious and loving and very winsome. He *does* understand cause and effect. And he has a great rote memory. But he can't even remember to put his papers in his backpack. Every day he brings home an empty backpack. His teachers is concerned that he is falling behind more and more and that he needs a lot of 1-1. Forget the VCFS in his biography. We were all sure he had it (pychiatrist too) but he tested negative. There is nothing left but FAE (he definitely is not full spectrum FAS), but I heard FAE can be just as bad. We want him to have a quality life and want to learn more about this. Any links? Any books? We want him to have a quality ADULT life too. Do any of these kids get assisted living? Lucas has a borderline IQ and his performance level is only 72 and we are trying hard to get him into a class that is for mildy cognitively delayed kids both because there is tons of 1-1 and because he doesn't function at age level and needs help with life skills too. At home he isn't interested in our teaching him life skills and doesn't pay much attention. But he is very courteous and willing to learn in a school setting (go figger). He is a wonderful little boy and we want to help him all we can, but we really don't know how. What is the prognosis for FAS/FAE kids as adults? Do most need help as adults? I don't mind. I just want to know so I can anticipate, plan, and update my oldest child sot hat if anything happens to us, my older son can help with his placement/care. Thanks to anyone.

[lucyjoy]

I don't know that much about FAS, but I have a couple kids with auditory processing problems that sound a bit like what your describing. It's sometimes described as auditory deslexia and is often lumped in with sensory integration problems. I can''t remember any of the books I used but they were all in the deslexia section. Anyway, they remember more complex things but have trouble with simple daily things like what a comb's called.
Most people when they talk rest at beat seven when most people start processing what was said. These kids start processing at beat four and miss five and six and guess what was said.
Anyway, something else you might look at.

Some fas kids do require assissted living and should qualify for SSI after adoption subsidy runs out that will help some with their living.

[addielee]

During our MAPP training, I had begun doing research on drug exposed infants as well as fetal alcohol syndrome. The information I discovered was quite surprising. I discussed this at length with our SW/Trainer and, in it's most simplest form, she described the effects of drugs and alcohol in infants this way:

Re: Drug Exposed- typically it's like there's a wire loose in their ability to process information

Re: FAS- the wire doesn't make connection.

Understand that FAS (fetal alcohol syndrome) is different from FAE (fetal alcohol exposure). Effects vary.

Go to Google.com and type in fetal alcohol syndrome or drug exposed infants and see what you come up with. There are parents that have successful placements with adopted children suffering from drug addictions and FAS. If indeed this is the case with your child, it may be encouraging to locate some of their stories and see what they found beneficial in working with their children.

Best wishes to you and your family.

[Dr. Art]

A child with FAS has experienced neurological damage as the result of prenatal exposure to alcohol. This damage does not go away, and children do not grow out of it. However, children and teens can learn to work around their problems and to function well...depending on the extent and severity of the FAS. Generally, the earlier you intervene the better the prognosis. I'd really urge you to get connected with a professional who treats families with FAS children as a big part of his/her practice. A good place to start for a referral is your local children's hospital, talk with someone in the developmental pediatrics department. You may even want to have your child evaluated by a developmental pediatrician and to also have neuro-psycyological testing done by a neuro-psychologist to identify specfic areas of difficulty so that you can get a good IEP in the school.

[mrbeansmom]

We have two bio siblings with FAS/FAE. FAE is actually the more challenging and presents the most behaviors. An FAS diagnosis requires a certain list of criteria such as small stature, failure to thrive, small birthweight, the facial features (small pointed chin, wide spaced eyes, flat filtrum, epicanthal folds, flat midface, upturned nose). My two have everything except the small stature. My two have extremely challenging behavior. The younger one (female-2nd grade) does better in school in a highly structured setting. They are both in special ed classes and have been all their lives. The older one (male-4th grade) is the same behaviorally across the board in all settings. Both have trouble with reality/fantasy and neither really understand consequences and cause and effect. They are both mederately mentally retarded. The 4th grader has a major attraction to fire (yikes!!). I belong to two very good lists for parents of kids with FASD. One is for parents in CA and the other is one of the best on the Internet. It's called FASLINK and you can join by contacting this address:

majordomo@listserv.rivernet.net

Interestingly, I have a friend going through a similar situation as you with her adopted daughter. They thought she had that VCFS too, but her test was negative as well. Now they are looking at FAS/FAE.

[Mom_Of_Many]

Yikes! Thanks for sharing. My son is not really a behavior problem. You may want to check a RAD site to see if he has both. I have heard they sometimes go together, which complicates the diagnosis and treatment. Prayers go out to you.

[louise]

good book recomendation...

Fantastic Antoine Succeeds.

[mrbeansmom]

>>Fantastic Antoine Succeeds<<

Yes, yes! A really good place to start!

[mrbeansmom]

>>You may want to check a RAD site to see if he has both. I have heard they sometimes go together, which complicates the diagnosis and treatment. <<

Yes, sometimes FAS/E and RAD do go hand in hand. Thank God, neither of mine fit the RAD diagnosis. I do know people whose children do though. It's a very difficult journey to walk.

Thank goodness your son doesn't have the behavior issues. They are quite challenging. Mine are just like loose cannons. They truly don't understand when they cause harm. They think everything in life is too funny. They are very innocent in most of the mischief they cause. They just don't get it.........

[Mom_Of_Many]

This cuddly little snuggler, who is joined at my hip, and does not really display that much oppositional behavior (he wants to please) thankfully doesn't have RAD. I had two of those two and it's a whole other ballgame!! From what I have been reading, he seems to have some of the charactoristics of FAS, but not all of them. However, he has enough that I can see him NOT growing emotionally, and can visualize him needing assisted living as an adult. I'm kind of upset that all the people I took him to, knowing his history, sent him to every specialist on earth, but "ruled out" FAS/FAE. Well, he doesn't have FAS full-blown, but you can't really rule out FAE. But there is no tests for it and it is just becoming more obvious as he grows and loses more ground socially and in school. I guess it's time to hit the books and learn all I can. Thanks for the responses

[Dr. Art]

Frequently chidren with FAS also have Reactive Attachment Disorder or trauma-attachment difficulties. This is understandable since often alcoholic birth mothers are also neglectful or can be abusive as they often have other problems. Furthermore, an alcoholic parent is often unable to provide consistent responsive care, which is necessary for a healthy and secure attachment to develop. I'd suggest getting a thorough evaluation by a mental health professional who is familiar with these issues. You can find someone in your area by going to www.attach.org The Assoc for the Treatment and Training in the attachment of children.

[JessTK]

Our son's bmom certainly used during her pregnancy. He had NAS symptoms at birth but neither was given a blood test, and like you we feel it is unlikely she used drugs but said no to alcohol. Because she will not admit to any usage we cannot get a diagnosis of FAE (we know he does not have FAS because measurements are normal) FAE, from what the Doctor said, is the same as FAS except to get a diagnosis of FAS they must also have the measurements. Our son sounds a lot like yours except he does not seem to have an understanding of cause and effect and he has a high average IQ, but social and daily living stuff is a problem. We have trouble with school (not getting 1-1) because he does not have the diagnosis (he would if Bmom would admit to using) From what I understand is that without the diagnosis he cannot recieve any help, even assisted living when he is older.(because of normal IQ) I have worked with individuals with FAS/E and the ones I have worked with manage to live on their own with some assistance (ie. pay bills, help manage money, find work etc...) I think it really depends on the extent of the disability but one guy I worked with had full FAS and did manage semi-independant living. There is a great video from the BC government called "Redefining Success" and the have a great website www.bced.gov.bc.ca with a lot of info. I have been told that even without the diagnosis "treat" the child as though he has it (because it is probable) and using techniques and understanding it will help you all out. We also did some attatchment stuff and his behaviour improved (ie. LESS impulsive, LESS forgetful) It's working to use both, although he will always have a neurological disability, that can't go away.

[Dr. Art]

One final thought. If you've not already gotten a good evaluation by an developmental pediatrician and also by a neuro-psychologist, you might want to consider that, as well.

[Mom_Of_Many]

Hi. I am so grateful for all your responses. Lucas has a psychiatric appointment on Jan. 23 and our psychiatrist is really good. I suspect he thinks Lucas is FAE, but wanted to rule out possible other causes of some of his dysmorphic features first and I'm going to bring it up to him. Also, he is not aware of the trouble Lucas has in social immaturity and how badly he is suddenly falling behind in school. Lucas can not even remember to bring home his papers at night. He comes home with, his pride and joy, a backpack with wheels, but there is never anything in it. The school is making allowances for his disabilities, which so far are bipolar and ADHD. But that wouldn't explain everything, especially lack of abstract thinking skills and how he is not maturing at the same pace as other kids and why he can't remember to bring home his papers. If he DOES remember to bring them home, they are scattered and lost before he gets into the house (he takes the bus). I worry about him living independently for reasons like this. He is too scattered and too spacey. I can seeh im getting a checking account at 18 and just writing checks, with no money in his account. They say that FAS/FAE kids are sometimes 12 years old in their reasoning and sometimes 6 (as adults), but they have an arrested ability to reason things thru, and I see this already in Lucas. Anyways, I've already ordered three books on FAS/FAE, including Fantastic Antoine Grows Up (since Fantastic Antoine Succeeds was written as no longer being carried at Amazon!). I was disappointed about that, and, if anyone has an old copy they want to sell, I'd like to buy it! I feel like, for the first time, I finally understand my little boy and why he is the way he is. And I sure wish I had NOT been told, every time I asked, that he did not have symptoms of FAE, because he does. I am going to have his psychiatrist and neuropsychiatrist (who tested him for school) help get him into a class for cognitively delayed kids (mild). His IQ may end up in the 80's (verbal is 90's, perforamnce 72), but that isn't all they go by here. His inability to function independently will count as will his inability to do any handwriting. He can't even write a sentence. His fine motor is way delayed----everything must be oral. If anyone knows of a good e-mail site or discussion site for FAS/FAE, please let me know. My e-mail is pammar@tznet.com I just want the very best life possible for my precious son. And he has already been sexually abused by the 13 year old who was with us for two years. Now it's time to turn everything around and be positive. Thanks again for all help and any more help is welcome!

[Mom_Of_Many]

Oh, yes. And this to Dr. Art, concerning RAD. Lucas was "fortunate" (sarcasm here). His birthmother had him, high as a kite, and abandoned him in the hospital. He never lived with her and had extensive holding and cuddling right after that as he needed open heart surgery. The notes about him say the nurses had to hold him all the time because they couldn't calm him and had to feed him bottles of water when they couldn't give him any more formula because he so badly needed to be soothed, and he was very beloved in the hospital. Then he went from there to his only foster home, a medical one, where the foster mom was competent and very used to kids with special medical needs and he got plenty of love there too. When we got him, he seemed confused (it was a quick transition), but he seemed to bond quickly. I know many FAS kids are forced to live with their birthparents for a while, but Lucas never did and never seemed to be unattached. We even had to have a "bonding assessment" before we adopted him, and we passed easily. Thanks for your words of wisdom though