Sunday, March 27, 2011

Thoughts on FASD by Victoria

This is the wonderful story of another adoptive mother who has a son with FASD (Fetal Alcohol Spectrum Disorder.) When I read her posting it brought tears to my eyes. One of our sons is diagnosed with FASD as well. Her story felt so familiar it was like looking into a window of my own life. It was so encouraging for me to read her story that I asked if I could share it here on my blog. I think we adoptive parents with special needs children can learn so much from each other!

From Victoria:
I think that when people do not have high, although reasonable expectations or our children, they will rise to that lowered expectation. The 'self-fulfilling' prophecy at work.
When I adopted my son at 6 mos, I was told of his FASD (Fetal Alcohol Spectrum Disorders; altho, back then, it was FAS/FAE). When, at 8 mos, he was fully evaluated for special services, I was told that he would probably be hopelessly retarded, that he would probably not talk past very rudimentary words, that he might not walk and that I should just love him as much as I could, keep him happy and then put him in some sort of facility by the time he was a teen. I walked out of that meeting vowing that, now matter what, I would see that he would do the best he could, no matter what that was.
When my ds was about 8, he was being evaluated for some outside help (Supplemental Social Security). The several doctors we were asked to see for evaluations told me that his IQ would continue to fall (it was in the normal range, at this time), his needs would increase and that we should start looking for a group home/institution for him by the time he was 12 b/c it would take several years to find something and get him up to the top of the list by the time he was 18. My son's FASD was responsible for his myriad other dx: ADHD,CAPD, SID, Language/Speech Disorders, LDs, scoliosis, hypertonia (CP), and behavioral disorders NOS. As a special ed teacher, I was helping him a lot, he was in a Montessori school (meeting his needs nicely) and yet was turned down for aid b/c he was doing so well (???). I decided that these people could be right but that I was going to fight like crazy to prove them wrong!
I started using diets and supplements suggested for autistic kids (he had, like a lot of kids w/ FASD, lots of autistic-like behaviors) and I had to start somewhere. I eventually implemented my "5-Star Approach" when he was 9-10 (after a disastrous run w/ ADHD meds): 1) nutritional/diet therapies;
2) neuro-movement programs; 3) therapeutic parenting; 4) school choice; and 5) a belief system (not necessarily religious) and a village to support that system. I homeschooled my ds thru middle school and was lucky enough to find a high school that met his needs. Today, my ds, at 19 y/o, who was supposed to be so hopeless to the world, has graduated from high school w/ a regular diploma, has been working part time at Target (a job he got on his own!), is now in Culinary College, has made plans for his future, goes out with friends on his own, does research on the computer, comparison shopping before he ever buys anything or searching topics he's interested in, who works his bank account fairly well (he still needs a little help with this but a friend of mine who has a brilliant dd at Cal Berkeley doesn't do much better). My ds isn't crazy about driving and, even tho he is capable of passing his test and is actually a good driver, will probably just renew his learner's permit (which test he passed on his first try, BTW, unlike most of his NeuroTypical friends!) for a bit more practice. About a month after turning 18, he was called for jury duty and I got his docs to write saying he wasn't ready for that yet. My ds still has his struggles but I am quite sure he is on his way to living independently (not a group home!)...it just might take him a little longer to get there. BTW, no one believes me when I tell them of his 'challenges' b/c it isn't obvious, at least not on the surface.
I think some professionals have a lot of nerve telling us parents what our kids will or will not be able to do. It's one thing for them to say 'Look, here are the statistics on such and such," or "We don't know what the future holds but so far I have seen...." But they need to follow up all such statements with "...and so, knowing that, lets see what we can put into place, what we can do to help you, the parents and your child, so we can do better than what we have seen in the past." It just galls me when I hear about docs/professionals who doom a child before they even get started!!
Thanks for letting me vent,
Victoria

1 comment:

  1. LOVED her story. what amazing love this mom has. Thank you for introducing us to another mom that "cares" :)

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