Saturday, May 21, 2011

Michael Angelo and Motor Stereotypy

Hi! My name is Leah. I am married to the greatest husband Michael and have a wonderful 14 month old son named Michael Angelo. He was born 2 weeks late, and after a failed 2 day induction and still no dialation, c-section he was! The past 14 months have been the greatest months of my life... and I am so in love with him! We live in southern Massachusetts, very close to Rhode Island. We have 3 awesome furry kitties who are also dubbed "my children". We enjoy walks, cooking out on the grill, "adult" drinks and just hanging out with friends. I also have a website-in-progress,, which has savings on childrens items.

I have decided to make this blog, because I had believed my son to be showing the signs of Complex Motor Stereotypy (CMS), aka Primary Motor Stereotypies, aka. Stereotypic Movement Disorder (SMD). It seems pretty clear to me. He does the "arm flapping" as it is referred to I guess. A lot. He sometimes does it for 20 or so minutes with 1 arm, then when that arm gets tired he switches to the other... then at other times he does it for 30 seconds on each back and forth. While he is doing these arm movements, he points his toes and clenches the muscles in his legs very very tight. He cracks his ankles sometimes he does this so hard. He also makes a surprised face, almost like hes saying "ooo" and sometimes stares blankly into his hand as he is flapping it... almost like he is in a trance.

I asked the pedi about this at his 9 month check up, and he said it was just how he entertains himself. I should have been more specific in telling him how much he actually does it and for how long... but I never really thought it was anything until recently. He is doing it a lot more now and it sometimes is keeping him from falling asleep. It seems that sometimes its involuntary and other times it is voluntary, but i usually can get him to stop by making him "forget" he was doing it by quickly changing his environment or distracting him.

I am leaning towards a non-autistic diagnosis when he gets older, because he answers to his name, likes to be held, will always look anyone in the eye and he LOVES people of all shapes and sizes. He is progressing just fine for his age. I have been told that there are autistic children whom behave in such a way though. The problem is he is just too young to tell, and it honestly drives me insane... to not know what is going on inside that cute little brain of his.

I scheduled an appointment with a neurologist June 7th, and i must say i was very disappointed with how she dismissed my concerns... and went on to tell me he was a normal little boy. I had to actually ask if this was CMS or SMD, and she said yes. I understand when she told me he was progressing fine, and he was "normal" for his age... but i kept pressing the issue about the flapping. She then asked if "it would make me feel better to bring him in for a follow up" Ummm, YES!!!! So we are going back Oct.11, 2011. If she is very dismissive again i am going to see someone else.

As i find out new things, i plan on updating this blog. I come on here very often. I am sort of obsessed with this, as he is so young... and it is too early to tell if it is something more serious, such as autism, aspergers, or Autism spectrum disorder.

This is a relatively new finding, this CMS/SMD... and little is known about what causes it. Most children who have it do not grow out of it, they simply just learn how to control it when they are much older.

I found this WONDERFUL article about it here:

I am part of a CMS group, and there are some adults on there whom also have CMS or SMD, and they are leading perfectly normal lives, but still have these movements. Someone in this same group had made this to give to her childs teacher, i find it to be a great informative letter. I copied it below:

Primary motor stereotypies (also called stereotypic movement disorder), are rhythmic, repetitive, fixed, predictable, purposeful, but purposeless movements that occur in children who are otherwise developing normally.  Although the movements that children with SMD make are similar to autistic stemming, children with SMD are usually NOT autistic.

Primary Motor Stereotypies are INVOLUNTARY and can include:
Intense hand/arm flapping and/or waving Wiggling or rotating hands/finger in front of face or at sides Opening or closing hands repeatedly Clenching neck/face muscles Grimacing or opening mouth Repetitive uttering/noisemaking (usually non-verbal)
These movements and sounds are normal and do not harm the child in any way.  The movements are a body’s way of expressing and interpreting certain stimuli and are not indicitave of pain or seizure activity.  Sometimes specific thoughts and objects can trigger the movements.  Children have little control over these movements.

It is important to remember that attempting to interrupt or redirect the child is NOT a good idea and can draw unnecessary attention to them.  Pointing out the behavior or trying to make them stop can affect their ability to remain confident in social situations, and injure their self-esteem.

The best way to address a stereotypy is to leave it alone and let the child make the movement until he or she stops.  Remain calm and nonchalant in addressing it with the student and other children.  


I think its good to post my videos of my son doing them here, so other moms and dads that are looking for answers might feel comfort in knowing they are not alone, and that this is a real condition.

This first video is basically how it started, he was 6 months old here, but was doing this way before this video.

These 2 videos below are from may 2011


  1. This is great info. We just had our first neuro appt for our 12 mo. old and he was "diagnosed" as having this disorder as well. It has been a frustrating process to even get this far. How is your son doing now? I am so concerned to see how my son will develop. He has some physical delays (i.e. not quite crawling yet, can't stand on his own) as well and has started physical therapy.

    1. Hi Amy!! I am so glad you found it and it helped!! I really need to update it lol, Michael Angelo just turned 2 the end of June. He also was a little behind with walking and crawling... he started to crawl around 11-11.5 months and didnt walk until about 15-15.5 months old. He is actually now enrolled in Early Intervention and he loves it. He was very socially anxious around other people, ESPECIALLY other kids. He hated them lol. But now hes getting so much better, and its great!! Because his neuro gave him the PDD-NOS diagnosis in december, he was able to get in EI for free until hes 3 years old, which can also include ABA services. I know he is going to lose his PDD diagnosis, as now i can see he is not autistic or really even on the spectrum... but i def. had doubts, especially when he was around the age of your son.

      n regards to the arm flapping and what not, he still does that, its more localized to when hes super excited now, and he still does it a lot. its funny becuase now he almost gives himself a purpose when he does it... he is obsessed with the wiggles and they do this thing with their hands moving back and forth with their index fingers up... and now when he does it (a lot of the time anyways) he incorporates their moves with it. Its cute.

      He is now finally starting to talk, and he copies everything we say now. some good and some bad! LoL!!

      I also am getting a little concerned... as he is OBSESSED, and i mean literally obsessed with himself in the mirrors... he will arm flap and yell and talk complete gibberish to himself for literally HOURS if we let him to himself in it. I know its normal for them to be curious and interested, but his is definately turning into an obsession. I guess i can only wait and see where this goes.

      Shoot me an email. we can talk that way if you wish!