Where do we go from here? We need to start thinking about Christopher's future educationally and when he's out of school. Educationally, we're looking at a cross between an autistic classroom for the ABA training and a preschool disabilities classroom to help with social skills.
We've not gotten straight answers as far as most other things. The closest doctor in our area that deals with his 16p11.2 syndrome is in Boston. That's almost 5 hours from here! We did find a genetic doctor who will help if we participate in a study. We're game.
I hope they can help since our insurance will not test Matthew for the same thing. He really needs this test. If we can't get things taken care of, I'm calling news stations, etc. Hell hath no fury like a mama fighting for her kids!
Wednesday, March 10, 2010
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2 comments:
If there is anything I can do to help, please do not hesitate to ask. I have friends who have friends, so maybe we can do something to help. Please give your sweet boys tons of kisses from us.
<3 Stephanie, AKA The Drama Mama, AKA Wyld.
Please don't take offense to this, as none is intended, and I have been where you are, and I know it's easy to think people are being mean or offensive when they're not. And I'm on your side. Promise. :)
I just wanted to tell you that people are probably not trying to hide any truth from you, but that they can't give you straight answers, because this is such a rare condition, and it will affect every child who is born with it differently. There may be some similarities between children affected by it, but none will be just like someone else.
Even with a disorder as common as Down Syndrome, it's impossible to predict how an individual will be affected. The boy with Down Syndrome who played Corky on Life Goes On graduated from college. So did the young woman with DS who played his wife on the show. There are also those who are much more profoundly affected. But it's not something that can be predicted. Just like it can't be predicted how any child will turn out.
I hope you do get some answers, but please don't take it personally, if they don't have the answers you're looking for.
{{{hugs}}}
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