CMS: The most misunderstood childhood challenge you’ve never heard of

by

Tara Shafer

posted in Parenting

One rainy afternoon one of my children’s teachers called to bring my attention to an atypical classroom behavior. She said that my child would sometimes suddenly start intensely moving their hands and arms in apparent excitement. At times, they’d bring their fingers close to their face, and a certain rigidity around the mouth set in. (I knew what she meant and I would describe the optics as almost seizure-like).

This teacher reminded me that this child was a friend to all in the classroom, loved the challenge of learning, enjoyed imaginative play, and demonstrated tremendous empathy and leadership qualities.

Because she was a particularly talented educator, she wanted to make me aware so that I could respond if something neurological was beginning to manifest. There was no judgment beyond that. To be sure, we took all necessary measures to rule out serious underlying causes. Once we were able to rule things out, I knew exactly what we were dealing with.

I mentioned this to a friend. “Oh,” she said with a twinkle in her eye. “Jazz hands, right?”

Yes. But more. She was keeping it light. I was worried. I was worried about bullies. I was scared that people would tease my child as they had once teased me, when, as a child, I demonstrated precisely the same behaviors.

These movements are called complex motor stereotypies (CMS). As described by researchers at Johns Hopkins, these are:

“[R]hythmic, repetitive, fixed, predictable, purposeful, but purposeless movements that occur in children who are otherwise normally developing. Examples of primary motor stereotypies are flapping and waving of the arms, hand flapping, head nodding and rocking back and forth.”

CMS can be confused for tic disorders, epilepsy, Tourette syndrome, obsessive-compulsive disorder, and many other conditions. In the mid-1970’s, I remember my differences separating me, making me lonely. There were no inclusion classrooms. My peers were uncertain how to interact with me, and sometimes I missed important directions in the classroom. As a child, I tried to navigate through these social landmines.

As a parent I’m so acutely aware of the unique nature of all children. They each come with struggles and gifts. Every. Single. One. I honor them all.

As parents, we need to model acceptance. Children are who they are. In the case of CMS, there is no particular need to “treat” it in and of itself – unless or until the child/family in question decides that they would like to. This is a personal decision. We are fortunate to live in a society which embraces neurodiversity.

Educators do not tolerate unkindness in the classroom. Children are kind too, more often than they are not — especially if the lessons of difference are continually reinforced. A classroom is a place where questions can be asked and answered in a respectful way. Questions can be innocent, and answers matter-of-fact.

As I grew, I did not so much outgrow my CMS as I learned to manage it. Although children were not always kind to me, I learned to find the one or two in a group who were kind. I never became the life of the party, but I have navigated the world collecting beautiful jewel-like people one-by-one. I’d not have it any other way.

Also, I recall experiencing the world, always, in a very intense way. I have visceral and lasting sensory memories of many things. I carry these things with me. I store them up and I write them down. It’s how I explain me to myself.

For further information about CMS, take a look at research at Johns Hopkins here. Also, get a referral from your pediatrician for a comprehensive neuropsychological evaluation. Depending on the age of your child, your local public school district may also be able to help direct you. For FAQ, visit this helpful link.

Here are some examples of prmary motor stereotypies. These short videos are suitable for describing motor stereotypies to children who have them, or their siblings, friends, peers.

Lately, as my child goes to school, this kid is bucking me — insisting on riding the bus, navigating the world. This child loves a teacher. And every morning when the bus goes, my heart lifts me up a little on the accomplishment it contains and the one whose full glory is still unfurling. It’s all going to be alright.

What questions do you have about CMS?Do you have a child with differences?

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