I just received an email from Johns Hopkins about their new Motor Stereotypy website. It looks great and has tons of information on it, so please check it out.
http://www.hopkinsmedicine.org/neurology_neurosurgery/specialty_areas/pedsneuro/conditions/motor-stereotypies/
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.
ReplyDeleteTo 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 for posting this, see my response below...about my 9 year old son...you have put us at ease!
DeleteI'm 22 and this has been exactly my experience as well! It was never a big deal when I was growing up, and it just kind of became a private behavior on its own over time.
Deletethanks, i think my child has this and it makes me feel better.
ReplyDeleteMy son is almost 9 years old. I first noticed it when he was about 18 months old. He was progressing normally and meeting all the age appropriate marks so I didn't worry. He will jump up and down and flap his arms/hands when he is excited or thinking of something he is going to do or see that is exciting. I have to admit I have researched and researched thinking he had ASD but he is doing well with friends and in school so we are leaving it be. He is who he is, he doesn't do it in public and tells me he doesn't do it at school. If it makes him happy or relaxed who then so be it, I don't want him labelled.
ReplyDeleteMy daugther started doing this when she was about 6 months old and is now almost 5 years old, we always thought she was just excited but I never seen this in other children when they got excited and I just found this out! I felt so bad about not talking and asking the doctors sooner. We have our first appointment next week to tell her Dr. sometimes shell hit the back of her head, I recored my daugther doing it im going to show the Dr the video and hopefully she does refur us to a Dr.
ReplyDeleteThank you for sharing. My biggest fear for my 4 year old son who shows symptoms of CMS. He is also very sensitive to loud sounds like train horns,sirens, and loud crowds applauding. Do you, or have any of the contributors have sensitivity to loud sounds? Anything you, or anyone can share would be helpful. Thanks again for sharing.
ReplyDeleteWhat I meant to say is that my biggest fear for my son is that he'll be made fun of & become withdrawn. Did children tease you? Is that why you stopped doing the flapping in public? I've already experienced people openly laugh at my son. I don't think the few people that have meant to poke fun, but it did hurt my feeling. My son didn't even notice.
ReplyDeleteHi
ReplyDeleteMy three year old has just been diagnosed with CMS. He is also very sensitive to loud noises and can be very shy around other children. The pediatric neurologist suggested that, rather than ignoring it, we let him 'own' it and so now we will ask him what is exciting him or sometimes say in a fun way that he is doing his happy dance. We feel that this is working as he can now tell other children why he occasionally flaps if he is asked. He is in a preschool and doesn't seem to do it much at school. However, when he comes home he sometimes does it constantly all afternoon as if he is releasing all the energy stored up during the day. He also has some coexisting tics which we have been told to observe and see if they become more pronounced over time. We hope it does not interfere too much with his life and, to be honest, we don't think it will do. It is just who he is. The neurologist also recommended getting him into team sport as a way to improve his social skills (which are absolutely fine at school, by the way) and we have noticed that getting him active is another way of helping to relieve the energy. He is a very, very energetic kid.
I am pretty sure my 9 year old has CMS-- how do you all explain the flapping to others? She flaps a lot whenever excited and kids are starting to notice and comment.
ReplyDeleteThanks for any suggestions!