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FASD Support Thread, Anyone?

post #1 of 2
Thread Starter 

I wasn’t sure where to post this, so I’ve cross-posted to Adoption and Special Needs.

 

We adopted our 8 y.o. DS from Russia in ’03 when he was a year old. We noted then that he had some issues, particularly with food, but we attributed it to his first year in the hospital and orphanage.

 

However, as he has grown he has developed other issues that look a lot like ADHD. I homeschooled him last year because he was having a lot of trouble in the public school kindergarten and I just didn’t feel the environment was very sympathetic. He is a very friendly, outgoing child but has great difficulty focusing and, lately, retaining information.

 

I noticed he had some facial anomalies (smooth upper lip and lack of a distinct philtrum in particular) and at our latest visit to the pedi she confirmed that she saw signs too. So… I am just wrapping my head around this whole thing, and I am not necessarily convinced (is this denial??), and I am on the fence about getting a formal diagnosis from pediatric genetic program we have here.

 

I guess I am just wondering: is anyone else in the same boat? I would love to have a Mothering support group; I have joined some mainstream ones, but this is honestly the only place I’ve felt really comfortable, discussion-forum wise, and I know you all will give good advice, suggest awesome resources, and all of that. It would be cool to have a regular thread where we could feel supported.

post #2 of 2

My grandparents adopted their great-niece when her parents were killed in a car accident when she was 2.  By age 5 it was obvious that something was different about her, and as she got older, the differences were much more apparent.  My grandparents chose to do nothing about it, she was placed in special ed classrooms and "graduated" high school through a special ed program.  She can not live independently, so my mom petitioned to become her guardian.  Once my mom took over guardianship, she took her to a geneticist first thing.  Everyone assumed it was Fetal Alcohol Syndrome because her mother was an alcoholic.  The geneticist actually thought there were many signs of Fragile X, perhaps also with FAS.  They did a Microarray to confirm the Fragile X and were all shocked when the results showed 7 different chromosome abnormalities.  None of them are associated with a specific syndrome, some of them may be "benign" (a certain percentage of the population probably has one or more micro deletions or duplications in their genetic material that make no substantive difference in their functioning), but certainly some of her abnormalities are the root cause of her pretty severe disabilities.  

 

SO...all that to say...you never know!  Some people like to have a known "cause" for their child's issues.  Some people think that unless identifying that cause will lead to some treatment or management, then they don't care to know.  At the very least, if there are any abnormalities found, they can be catalogued and studied by geneticists to try to further the understanding of how our genes effect the way we are.  Genetics is a very young science, the Microarray test has only been available for a few years.  

 

In my son's case, the Microarray uncovered a known syndrome with a name and a set of distinct recognized symptoms.  It has been helpful to have a community of people to interact with who know the syndrome.  I have an idea of what his future may hold, I know what other symptoms to be on the lookout for, etc.  Having a diagnosis has been immensely helpful in many ways.  

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