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: http://www.hopkinsmedicine.org
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