Stereotypies and Sports

Hi again. I just got an email from a parent asking about stereotypies and sports. There was some concern that their son might not be able to prevent himself from "zoning out" during instructions from the coach. My daughter is a cheerleader and has been in gymnastics, and when the coaches are talking, she is listening! Perhaps other parents have different experience, so please comment if you have input.

Back to school, with a few changes

Well, we are back into the school year, and even with just a few days under our belt I have noticed a few things about Hannah's stereotypy. First, she is now 8 and in 3rd grade (where did the time go?) and she has been getting better about suppressing her stereotypies in public for a few years now. I talked about her movements with her new teacher, just as I have in years past, and so far so good. I have noticed that she will have more movements later in the day, probably within an hour of bedtime. I'm not sure if that is related to the additional stimulus during the day, or if she represses them at school and "saves them up" for later when she can do them at home and in private.

They have also changed in presentation as well. She continues to rub her nose and jump, but where before she was clasping hands and squeezing (as the predominant movement) she is now flapping her hands at her side as she jumps. It can sometimes appear as though she is doing full pushup movements with her arms at her sides. It isn't drastically different, but this is the first time I can remember the movement modifying and then continuing in the modified pattern. Not sure if it is significant, but if you live with a kiddo who has stereotypies, you notice it.

I hope all of you have successful back to school experiences, give big hugs to the kiddos!

Facebook

Just so everyone knows, I do have a Facebook group for stereotypies where people can join up and post comments/questions for everyone to provide feedback on. I find it has been particularly helpful for those parents who have a new diagnosis or are finding the term after seeing the videos. I'm not particularly fond of Facebook, but I will allow that it has been very helpful for parents who are worried (like we all were/are at some point!)

You can find the group at http://www.facebook.com/groups/motorstereotypy/ (link in sidebar as well). We would be happy to have some medical professionals, medical students, and educators on board, so if you are inclined please join up.

All the best-

Amanda

It gets easier with time...

I dropped Hannah off earlier tonight at a VBS event, and she was excited so the stereotypies were intense. Thankfully, one of the ladies at the event is a co-leader for our Girl Scout troop, so I just mentioned that Hannah would probably do them all night and pointed it out when it was happening. She said, "oh, I don't know that I've ever noticed it before." We have been in Scouts with her and her lovely daughter for 3 years now, and she'd never noticed it. It's hard for us parents, who see them day in and day out, to realize that they can go completely unnoticed by others. Just a note of encouragement for those parents that are just learning about stereotypies and concerned about their children in public. We can worry too much sometimes :)

New Video

This clip is 48 seconds long, and I count 5 separate stereotypic 'events'.  She's watching something with her sister, and it was obviously something she really enjoyed.  Keep an eye on her toes...they wiggle tons throughout. 

Comments on the blog...

Hi there-

I wanted to point out a comment from an adult with primary CMS that was received on the blog earlier...I was glad to read it and know many of you will be too.

Anonymous said...

I am a perfectly healthy intlligent university student. I have always hand flapped when excited or imagining things, especially as a kid but even now in private as an adult. My parents and siblings never really drew much attention to it...basically accepted it an a unique thing that made me "me". Because of that, I never looked up what might be causing it until today. Primary complex motor stereotypy is definitely what I have. To any parents out there, if your kid is normal in all other ways don't make a big deal out of it. Kids will realize not to do it in public at some point and automatically regulate it to a private activity. If I had been made to feel "different", I probably would have acted "different". Instead, I have plenty of friends, am doing super well in school and now people just see me as an excitable person. Also, hand flapping is a very enjoyable thing. Why make children feel guilty for engaging in it?

THANK YOU!!