[hopinginindiana]

My husband and are looking at adopting out of the foster care system. We found a child who is FAS and failure to thrive. He is 3 years old and has been in care with same fosters since birth. He also was diagnosed FAS at birth.

We have a son by birth that is 21 months. Both my husband and I have wanted to adopted for a long time. I am adopted and I have a brother who is autistic so I have been exposed to developmental disabilities and they don't scare me...my brother is 16 years younger than me so I experienced this basically as an adult.

Onward..my husband grew up in a leave it to beaver world. Although he says he wants to adopt he isn't sure about FAS. He hasn't read anything on it, just has heard the horror stories. So he is skeptical about this child.

I have talked to this childs case worker. They would like to place him with another young child...he likes kids his age and plays well. He is very energetic, although she insists he's not adhd. He has been seen by many specialists at an area childrens hospital for FTT. He currently is tube feed only. He likes to put objects in his mouth, but won't eat, although the other day he ate a cracker at his sped preschool.

He started sped preschool about 9 months ago and has really taken off...he is now talking and is developmentally the age of 2. His gross motor skills are fine, he does have delay with fine motor and speech. He receives ot, and speech therapy.

He is a very happy child and affectionate. He has not been diagnosed as mildly retarded but the case worker believes this is so.

There is no plan at this time to get him off the feeding tube.

He does not sleep, rocks and bangs head on crib. Fosters do not have him on any meds.

I should also mention the fosters are in their mid 60's have no plan to adopt, and give him soda and let him watch tv before bed for an hour. I'm not being critical, and I know FAS is the cause of his problems, but certainly this can't help.

He does qualify for subsidy.

I need input on this. I'm trying to think with my head but my heart is leading the way. I feel like my husband is being blinded by the negative. Certainly any adoption have its difficulties, and FAS is permanent. But, with the number of children who are said to have this condition in foster care, there has to be some parents out there with positive stories...aren't there?

I Guess my real question is, doesn't love, environment, and education make a huge difference in the lives of children with FAS? From so much of the readings on it, it just sounds like these kids are doomed?

Anyone with experience on FAS please reply. Please note this child is full blown FAS, not FAE. I can't seem to find a lot of info on FAS secondary disabilities as I can the secondary disabilities with FAE...does it make a difference in a person who has mild to moderate mental retardation as well?

And how much stock should I take in the case workers evaluation? I should also mention this child looks a lot and I mean alot like a kid with Williams syndrome vs. FAS, but the mother was a known drinker so they diagnosed FAS.

During the adoption process am I allowed to have a doctor independent of the situation look at his med records to evaluate? Are foster kids given the best possible treatments and do they have access to the best care? I guess what I am asking is there much care taken with the medical needs of wards?

Sorry for the rambling its 3am and I can't sleep with all this on my mind. Anyone that can help, please do!

[Sharon]

Greetings, fellow insomniac! It's only 2:00 AM in my time zone, so I guess I'm not quite as bad off as you are .
I know next to nothing about FAS other than what I've learned on this forum, but you might want to check out this thread:
don't most mothes who use drugs also use alcohol?
It contains some first-hand accounts by aparents raising FAS kids, plus a lot of informative links, etc.
Best of luck to you ,
~ Sharon

PS An optimistic and encouraging quote from this thread:
"One ray of hope that we do tend to cling to is that recently therapists have noted that some children with FASD do begin to mature and "level out" in their late twenties to early thirties." ~ Barksum

[hope4kids]

Hi hoping,

I have 2 daughters - ages 5 and 2 - with FAS. There is a huge range of ways it affects them. It is difficult to say what effects you will see as this child grows older, but there are therapies and parenting techniques that increase the chances of a positive outcome.

You will need to have a doctor who is an expert in FAS. They are not easy to find. There is an excellent doctor in Chicago that may be able to help you. He does assessments of children prior to adoption and makes recommendations for their subsidy agreement. He also helps guide you to the correct therapies and gives parenting advice. His name is Dr. Ira Chasnoff at the Children's Research Triangle on Michigan Avenue downtown Chicago. I don't have his number at the moment.

As far as the quality of care wards receive - it varies. A large part of it depends on the foster parents and the agency handling the case. Too many children do not get the services they need.

Regarding his lack of sleep, this is likely related to sensory issues caused by the FAS. My two year old had sleep difficulties until I started therapeutic brushing with her. The additional sensory input helps her organize and calm herself. Now she sleeps just fine.

There is hope. I think there will be more hope as the professionals learn even more over time. If he is mildly retarded, I think that would affect his outcome, but he needs to be tested before you accept the label. My girls are both very bright, but we are seeing now that my 5 year old has learning disabilities. We have therapies 5-6 times a week and home programs tyhat need to be followed. I also homeschool because the school district doesn't have the best understanding of FAS and my daughter seemed to be slipping through the cracks in pre-K.

It's late here, so I hope my post makes sense .

[saj]

I adopted a foster child who was also diagnosed at birth as FAS. He was abandoned at 9 months and placed into foster care where he remained until 13 months when he was placed with me. At that time he was considered a failure to thrive baby, developmentallydelayed and still carried the diagnoses of FAS. He was also medically fragile..had an operation at 15 months and the first year he had 10 ear infections and caught ever cold and flu bug that came anywhere near him. He did not speak. By that I mean he did not babble at all. He was quiet. He didn't even cry, and he would not eat. He was lactose intolerant and allergic to soy. (We did get involved with Early Interventions through All Childrens Hospital) They again gave the same diagnosis. We recieved excellent services. It is simply a matter of learning how to access them. We had in home therapies 2 times a week in the beginning. At 2, he still had not said the first word, although he was babbling and crying to express his needs. Also his receptive language skills was much higher then his expressive.....in other words he did understand what was being said to him, just would not talk. I did get him to eat, that is a story in itself. When we got him he was at the 5 percentile of birth weight and height. 1 year later he was at the 25th percentile, and now he is at the 50th percentile. That just means that 50% of the kids his age are bigger then he is and 50% are smaller. (He is right on) Some time in his second year he was re-diagnosed with FAE instead of FAS....This had to do with his physical attributes...circumfrence of head, facial features etc. (Same doctors that had diagnosed earlier as FAS) He will be 5 on his next birthday, and he is more then ready for a regular ed Kindergarten next school year. He no longer qualifies for speech therapy. He talks circles around everyone. He is very active, has attention problems and suffers from some emotional issues concerning attachment......nothing that we can not handle at this point. Later if therapy is indicated we will not delay in accessing it.
I would recommend that you research the FAS sites above, get as much information as you can and share it with your husband. Understand that my son's story is a successful one but MUCH hard work and energy went into caring for him. I also had an infant 10 months younger then my boy with her own issues. But my husband was totally supportive. Also, I do not expect that our journey is over. I still expect that FAE problems will raise their ugly little heads from time to time as we attempt to negotiate the various developmental stages.
Would I do it again?.....You bettcha!
Sincerely,
Saj

[Voidra]

Love, environment, and education DO make a huge difference. My husband and I also adopted a baby boy with FAS, Spina Bifida, hydrocephalus and sensory issues. He is the most incredible baby a family could ever dream of!

If he is eating a cracker he will eat with a Mom and Dad to encourage him. Our baby also had 'foster parents' until he was two years old. We were told by one doctor that he is probably retarded but my heart overruled my head and I chose not to listen. Now our little guy in only two months is talking, trying very hard to eat, playing with other kids, pretend playing and doing an amazing amount of typical two year old behavior.
When we met our son, his facial expression was flat - he would just gaze off into this little world that he had built all for himself. Now he doesn't take his eyes off of us!

Use your heart and bring your baby home! Each day you will experience joy like you have never imagined!

If you would like to talk pm me and I'll call you or you can call me - whatever works for you.

Good Luck to you!

[Jerry]

In our case we had said early on we didn't believe we could adopt a child with FAS. We finalized on our two girls (one is "classic" FAS) this past December.
Our doctor triad (GP, Psyhciatrist, & Therapist) all told us that the most important thing we can do is be very consistant with consequences. We've noted that she will have good days and bad days as far as being "zoned out" if you will. She has some very unique sensory issues. If you touvh her, she jerks away at the speed of light. She loves fabric of all kinds and uses some of her allowance to buy different textures, and then "styles" herself an outfit.
We're still fairly new with our approach and don't have a lot to offer as far as experience, but I will tell you that we've been told by our doctor triad that FAS is "often" accompanied by other disorders. In our case it's ADHD. We're also working with med's to help her control her impulses to hit and strike out when she's upset.
Having a sister fairly close in age to her that has her own problesm sometimes makes it difficult, but they're both making good progress.
Barki sent me a link to FASCETS that may be helpful to you.

http://www.fascets.org/

I'd caution you somewhat on your approach. We do believe that none of this is possible without a loving enviroment, but that's the foundation. The house is built with meeting the needs of the child. All of our kids (bio, foster and adopted) have been to therapy, and that is not always for the kids either!!!LOL!! Seriously, a well trained and liscensed third party that's involved with you in meeting your child's needs is very important (IMHO).

Whe our girls came to us the oldest did have a "diagnosis" of mild mental retradation. That diagnosis never set well with my wife or myself. She is a very bright and creative girl that easily "tests" our of a MMR class. We approached our "team" with the idea of FAS and they all said it definately was full blown FAS. This was after we verified that her birth mother did drink during pregnancy.
As far as an independent evaluation, you can ask for that but I would doubt that would be done unless the child was in your care already. We have always tried to use good judgement and proceed with the caseworkers knowledge. If you're making all the arrangements, doing all the leg work, and can present a reasonalbe arguement most caseworkers are very supportive.
Hope this helps

[Dr. Art]

You certainly can get an independent evaluation of your child. I'd suggest by a developmental pediatrician who has experience and lots of work with FAS children. You should also get a Neuro-psychological examination as well.


Remember that FAS causes brain damage and this is pretty much what it is. Such children will have cognitive impairments and love and environment will not change any of that. It is in the area of emotional response that you can have an effect; although the impulsiveness that can be present that is caused by the brain damage will not go away; only be modified.

So, yes, getting your own assessment will be helpful for you in making your decision.

best of luck to you.

regards