In Search of Support

I had someone suggest to me that we get plugged into some sort of support group to help us along the path of Mitchell's journey. As we are closer all the time to full-acceptance of his situation, I took the suggestion to heart. So far support has come from Yahoo special interest boards for CP, CVI and SWAN - a group for non-diagnosed children. I'm what you call a "lurker" since I mostly read summaries of the posts rather than actively post myself.

Finding groups in the community is a little harder especially since we don't have a real diagnosis. But we've had some activity. Last month, we attended a playgroup at the Association for the Blind and Visually Impaired. While 10 families were expected, 3 showed up. Even in the intimate setting, it was nice be able to share playtime void of mom-petition (AKA mom competition). Both of the other children present had a diagnosis. A girl was born with part of her brain on the outside of her skull. The part was removed and she was not expected to live, let alone see, walk and talk. Would you believe she is doing all of those? Amazing.

We also went to a monthly playtime at a private physical therapy center for children with rare syndromes. Many of the kids have genetic issues, like Angelman's. There was a wide range of abilities and the parents were fantastic - you wouldn't believe how good it was to be among those for whom comparing neurologist experiences is considered interesting party conversation! Still, it was quite overwhelming. This is Mitchell's peer group. Not exactly what you wish for when you think of your child's future.

I know we put a whole lot on the fact that Mitchell is undiagnosed. It's our main frustration made even worse now that we've met more kids that are differently-abled. Kids missing parts of their brain, with 3 extra chromosomes and having chromosomes absent at Mitchell's age are sitting, interacting, walking and more. Why if we have so many normal test results, no seizures, isn't tube-fed, etc., is he getting further and further behind? It doesn't make sense. Doctors tell us that 30-40% of kids go undiagnosed but from the unscientific census we've done in in the special health needs community, we just don't see how that is true.

Anyway, that's my rant for today.

--Still in search of support in Cincinnati!