Monday, December 21, 2009

Email from Parents

Here is a new message posted to my youtube account by another Mom.

Hi there! Id like to preface this entry with a huge thank you for creating this forum for parents of children with primary stereotypies.

My son, a beautiful 3.5 year old little boy, has been doing his movements for nearly 2 years. In his case, when he is engaged in an activity that excites him, he moves his fingers-one at a time (like a pin wheel) into the palm of his hands, in front of him. He does both hands at the same time and makes a humming noise (sticking his tongue out on occasion).

For years I have taken him to various neurologists which were very quick to suggest medication for his ticks in an effort to minimize the urges. Although, I never even considered that course of treatment, I have taken him for therapy with a Behaviorist (a few months worth) as well as OT (which he has been doing for over a year). Despite all of our efforts, his hand movements have not subsided.

This past summer, I (like Amanda who commented on an earlier entry) also took my son to John Hopkins University to meet with Dr. Singer and participated in his study. After meeting with my son for a few minutes, he explained the diagnosis of primary stereotypy. Finally I had an answer! Although, according to Dr. Singer, theres not much more I can do at this point, it appears that if my son is in the process of one of his hand movements, giving him a car or toy, etc seems to distract himBut only sometimes.

Hes very aware of his hand movements, since they occur throughout the day, and while he does them, often announces it to me saying, Mommy Im excited & I cant stop this. I dont want to stop. When Ive asked him why he needs to do his hands hell just say that he likes it because hes excited about the cars, train, houses, etc. Sometimes hell tell me not to look and to leave him alone but then there are those times where hell actually call me over so he can do his movements and joke about it.

One of the OTs he was seeing last year, in an effort to fix my son, was telling him to stop in a harsh tone & had both me & my husband do the same It was horrible and, undoubtedly, made him very aware & very insecure. Often yelling, Dont look at me!. It was truly heart-wrenching seeing a 2 year old go through those emotions and, after about 1 month, I found another OT who specializes in working with bright, high functioning kids. She has focused on trying to substitute his movements with other activities, among other things. Between his new OT, me & my husband, we have been able to help him overcome most of the insecure feelings he was having. Now, hes a very happy & active little boy who gets excited a lot.

My fear is that, as he gets older, children may see him as different and subject him to ridicule. As it is now, there are some kids in his preschool class that mimic his hand movements but they, as per his teachers, do it with him (monkey see, monkey do). It comes from a sweet placeAlas the beauty of non-judgment! I just pray the older children will be as kind.

I have some video of my son, which I had initially submitted to Dr Singer for review prior to our visit, of him doing his hand movements and hope to post within the week.

Once again, thanks for this forum & for letting me vent.

Please feel free to post comments!  


  1. Hello,
    once again I was googling stereotypies & wow- a new hit. I usually do a search every 6 months or so. My daughter had her first signs of "arm flapping & body hunching" when she was 16 months old, We have video of it at that age which her ped evaluated & sent us to have lots of tests at a PA hospital. She has had MRI's, cat scans, etc. She has seen neuroligist, physcologist and behaviorists. She is 7 & 1/2 now. Straight A studuent, public school, has friends- she is quirky. Has not stopped the arm falpping, it is worse- she does it when excited or concentrating. If she is reading outloud & you hug her & hold her arms, she ahs to stop reading. She tells people "she is just excited", can't stop doing it & it "just feels good". Unfortunatly as she grows older, more kids notice & point it out. The worse is when she is walking & does it over & over, she leans in when doing it as she flaps her arms. She is very tall, it is very noticable. She has been put on medicine a few times, it did nothing. What were they "treating" with medicine anyway we wanted to know? Ofcourse, no answers. Dr Singer is the only one we have found even attempting research with behavior modification with this condition in seven years of looking. We are in Florida, there are only 2 Drs within a 10 hr drive north or south who will see her or have even heard of it. I have even been told it would be so much easier for me if she were autistic b/c Drs know how to deal with that. (this FROM a Dr). Seriously?
    My hope is that my daughter stays confident in herself so she can ignore any rudeness which comes her way as she grows.
    I am so glad to see the website & be able to share fears with others who understand.
    If anyone wants to contact me,
    my email is

  2. You are crushing many stereotypes and that is why I like reading your posts! This namely article convinced me o the necessity of parents' interference into child's growing in the most strictest way!

  3. That is the problem with our country.There are so many young people who really want to get their Higher Education diploma, but unfortunately due to many reasons they cannot afford it. Is there any solution? I doubt that there is one at this point. Would have been nice if more grants were at least available for talented kids Or maybe good discounts for them. In any case, something that would allow them to study!

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