Thursday, August 27, 2009

Questions from other parents

Many of you might have seen the videos I posted of my daughter on YouTube. As I said in an earlier post, I started receiving questions from other parents shortly after posting it. I actually received one this morning! My thought in creating this blog was to provide information and allow parents and caregivers the opportunity to post questions and get comments not just from me, but from other families of children with complex motor stereotypies (CMS). That being said, if you are interesting in posting a question or comment, please email me at I will get it posted to this blog as soon as I can, and then you can check back for any additional comments.


  1. hello, my name is Leslie and i just came across your site. My son just turned 3 and is a very smart on point developmentally, little boy. But as your daughter has these movements so does he. The only difference is its just his arms, but its getting more frequant and now i am noticing him holding his breath,the same as your daughter. We went to the ped. and ruled out any autism or mental problems,but referred us to visit DuPont childrens hospital to have him evaluated by a nuro. ped. Im almost sure he has motor stereotypy, and as i looked it up almost had a breakdown when all i read that it was linked to mental and autism problems. Untill i came across your blog whitch gave me hope. I find i get embarrised for him and me when he does these movements, like i have to tell everyone,he is ok,dont think the worst. People have already started asking about it and it breaks my heart that he will probally get picked on. How does your daughter do in school? my son just started pre school, and its the first time he has been away from me so its hard. any info would be greatly appreciated. thank you

  2. Hi Leslie! I was just as terrified as you are about finding out that stereotypies are often linked with other serious conditions. What isn't commonly discussed is the fact that stereotypies are common in non-affected populations as well. This is just another reason why I am so excited about Dr. Harvey Singer's research (listed in an earlier post). Perhaps as he completes more research the public will have more information available about stereotypies in all forms.

    I hope your visit at DuPont Children's Hospital goes well! I'm glad you are following up with someone, and check back in the future here and hopefully I'll be able to post info that you find helpful!

    All my best-


  3. I am a Kindergarten Teacher in California. I had a student a couple of years ago who I believe has CMS. I personally know many autistic kids from severe to moderate. I have had at least one autistic child in my classroom every year for the past 10 years, again from severe to moderate, even though I have been teacher for 20 years. When this particular child began to flap his arms, it got me very worried. He has difficulty interacting with other kids (socializing) but still plays sports. He does well in school, but can easily be distracted (kind of zones out). I have always felt he seemed to be autistic in some of his social abilities, but nothing compared to the other kids. He is very bright so thats I why I felt it may only be CSM. It is very difficult for me at times, because it is always the Kinder Teacher who notices things like this, but parents do not want to hear it from me or for me to point out anything wrong with their child. Since it may be CSM, He will be completely fine and I don't believe I need to worry about him. He will do great in life.