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Aug 12 2014

Why Does My Son With Tourettes Have to Fight to be Accepted?

By at 3:32 pm

Walk-for-life

At my son’s friend’s middle school, a student came down with leukemia after fall semester. Fortunately, he went into remission in spring and was able to return to school. All the students were called to an assembly before he returned to explain why this student would be without hair, what had happened to him, and how they could best make him feel comfortable and assist him with the transition back into school. The school also planned a walk to raise money for childhood leukemia.

This boy walked into school and was immediately accepted. This is the model for which we should strive for all of our children facing any kind of health issue.

Over a year ago, my family faced a frightening medical situation. Almost overnight it seemed my 11-year-old son’s body started to shake and convulse, his speech became slurred at times, he started to repeat curse words over and over, and his body made odd movements and noises.

Over the next several months we endured visits to neurologists, oncologists, and other professionals to figure out what was wrong. Mostly by process of elimination it was determined he has Tourette syndrome.

But his journey “back into the real world”seemed a lot different from the boy with leukemia.

My son took it upon himself to write a note to his classmates and their families explaining what Tourette syndrome is. When there was a new teacher or a substitute it was up to my son to tell the teachers and other adults that his squeaky noise is a tic that he cannot control, and that telling him to be quiet really only makes it worse.

For my part, I called the school repeatedly (understatement of the year) and even brought in a psychologist to talk to staff about children with Tourettes and how to support them in an educational environment. We gave them strategies for working with the coprolalia (involuntary use of curse words) in a school setting as well as other environmental changes that might make things easier.

But to my son, he felt he had to beg for acceptance each and every day. He was actually envious of the kid with leukemia and asked me, “When will there be a walk for me, mom? How can we help people understand me?”

This wasn’t the first health scare for my son.

When, as a baby, my son was in the hospital for three separate open-heart surgeries, I was bombarded by delicious meals, clergy visits, cards showing support and love, and several thousand phone calls.

But when he was diagnosed with this neurological disorder, all I heard was a deafening silence. Of course my closest pals and our immediate families were with us, but other than those select few it was silent. I felt the compassion society has toward the medical condition and the disdain and contempt toward the other.

What if my son had been told by teachers, principals, or peers that he is accepted just how he is? That we as a community have been educated and understand that he does not mean or want to say certain things or make strange noises throughout the day? To learn empathy for someone who has a body that physically and mentally does not listen to them?

What about the kids struggling with depression, or an eating disorder, or one of the many mental health issues that many kids and teens currently face? How life changing would it be for them to be able to see staff at their school wearing a shirt saying, “I support my students with depression”? Wouldn’t those children benefit from assemblies, telethons, fundraising walks, or other awareness-raising events as well?

We might learn empathy and compassion, that everyone around us might be experiencing something that is beyond their control. How sometimes we need to look deeper into a situation before we judge. We might learn that some disabilities are invisible, that the kids who we think have “everything”might have nothing at all. We might remember that the Jewish tradition of bikkur holim, or caring for the sick, refers to a wide range of medical as well as mental illnesses.

I am so happy that boy with leukemia and his family got the support they needed through such a difficult time. Let’s continue to come together as a community to show our support to children and families going through any kind of medical/emotional/family crisis. Kids have compassion and empathy that is as strong as their feelings and emotions; sometimes it’s us adults that have the most trouble dealing with these things.

Remember, there is always enough support to go around. I’ll get my walking shoes ready for the next good cause, whatever it may be…

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