Tuesday, June 15, 2010

Message from parent of CMS child (now adult)

I received a message from a parent of a child with CMS who is now all grown up and doing fantastically.  I thought you would all enjoy...thanks again for sending it!

I just wanted to share a message I received from another parent of an adult with stereotypies, thanks again for sending it!

motor stereotypy - the future

Thanks for sharing your videos. I am pleased to know that there is a classification for this behavior. I went to your blog and scanned some of the posts. I noticed that one of the common threads of concern amongst the posters was if this was a permanent condition. Here's a little bit of anecdotal information. I have a 21-year-old daughter who had this behavior from the time she was a toddler. She would flap her hands very quickly in front of her face, grimace with her mouth stretched, change her breathing pattern, and pace quickly on her tiptoes. She had no other comorbidities and could easily be distracted from it, so I always considered this just part of her "normal." Please remember that this was before the internet. You couldn't just easily google some symptoms and get information. Behaviors were not classified as enthusiastically as they are now. I knew no one else who's child behaved in this way. When she was about six or so, she and I started having more in-depth discussions regarding it. I wanted to understand what she was experiencing, and people were starting to make comments about her "strange" behavior. I was very careful to make her feel at ease and avoided saying things that would make her self-conscious. At around that age, she began to slowly develop strategies that made it less noticeable. At 21, she says she still full-out does it, but only when she is alone (and it is less vigorous). When she has an episode in public, I can tell, but only because I know her so well. She has a slight shift in her facial expression. So...it seems that the underlying experience has never gone away, but the outward manifestation has changed. She is, by the way, a very smart, very creative and interesting young woman. I just wanted to share the information.

Facebook Page!

Hi there-

Ning was the site we were using to post information to discuss with other parents of children with CMS, but now they want our $$!  Boo I say.  I went ahead and set up a Facebook page for those that are interested, so please join up.  Just as soon as we get 25 folks on there I can get a custom URL, so join the group and I'll try to keep both the blog and Facebook updated.

All the best-