I found this blog post late last night, and it gave me hope again. It is about an autistic woman who didn't walk until 2, crawled between 3-4, had an IQ of 70, but went on to get advanced degrees.
http://blog.donnawilliams.net/2007/05/27/hypotonia-and-the-presumption-of-mental-retardation/
It is so hard when you really don't know what is going on in their little heads. I don't even think a crystal ball would help, because I wouldn't want to know the future if it isn't good. I am going to try and search for more success stories, to keep me motivated. I really need it right now.
I just became a registered nurse, and my ten-year-old son is infant-like, has frequent meltdowns, and cannot stand without support. He is missing a piece of DNA (chromosome 9q22.2) but we are unsure if it made him disabled. He has a diagnosis of severely multiply impaired, paucity of white brain matter, partial agenesis of the corpus callosum, microcephaly, deformities of the ankle and foot, and Autism.
Hi,
ReplyDeleteI just came across your blog from BBC. And Andy sounds very simliar to my Lauren. We have been on a wild ride with her too. She did not reach for objects until 8-9 months and holding up her own sippy cup was a huge celebratory success for us as well - she finally did it around 17-18 months. Hang in there - I read through most of your posts and I have the same concerns re: cognition. At least Andy has a few words...that's a good sign - we are working with Lauren just on vocalizing at this point. She is almost 20 months. Just wanted to say hi, and that I'm cheering for Andy from the sidelines.
Kate