By JENNIFER STEUER
One thing I have realized in the past few years is that I am protective, really protective of my family. When other children and some adults make disparaging comments about my family, my kids and my life choices, I will get my back up. And no matter how messy life gets, I know that my family is strong, we love each other and we will always have each other’s backs.
Two of my kids have Tourette’s syndrome. Two of the best kids in the world are dealing with uncontrollable and involuntary vocal tics and physical tics while going through middle school. The two of them are doing everything possible to fit in socially and be part of middle school life.
Those with Tourette’s syndrome draw attention to themselves by the very nature of the disability. The involuntary physical movements and involuntary vocal noises are related to the nervous system, and the key word is involuntary. Individuals with TS cannot control these repetitive movements and unwanted sounds. The harder a person tries to suppress the tics, the worse the tics will get, and the anxiety created by seeing other people’s reactions to this condition makes tics worse.
A child dealing with TS in middle school will probably tic up and down the hallway all day long.
Tourette’s can seriously affect a person’s self-esteem and feeling of belonging. Peers in middle school are so kind to one another, especially when classmates are a little different (I’m being very, very sarcastic.). I’ve tried to arm my children with all kinds of information and retorts. One classmate was giving my daughter a hard time about the tics, and she turned around and said, “I’m not being rude, I have Tourette’s.” The classmate’s response was that my daughter should be in a special education class. All three of my children are on the Gold Honor Roll. All three.
There are stereotypes about TS that many of us have seen on television, movies or perpetuated by comedians: the guy screaming obscenities or the woman who tries to sit quietly while her arms and legs flail about. These stereotypes continue when people assume diagnoses of developmental delays, learning disabilities and mental illnesses are automatically part of the TS experience. According to Tourette.org, “the disorder is not a mental or psychiatric illness” it is a movement disorder.
I’ve tried to educate myself about Tourette’s because I also believed some of the stereotypes. Tourette’s can be passed on by a dominant gene with a 50 percent chance of passing the gene on to a child (cdc.gov). Sometimes there are clusters of TS within families which does cause a continuation of the age old debate: nature vs. nurture. There is a genetic mutation that has been discovered, however this mutation is found in “a small number of people; this gene provides instruction for making a protein that is active in the brain” (ghr.nlm.nih.gov). There is evidence that even though TS does not cause developmental delays or academic issues, the comorbidity of obsessive-compulsive disorder, attention deficit disorder, anxiety and depression is apparent leading to the age-old question: Which came first?
When I Googled “celebrities with Tourette’s” there was quite a list, and not just modern-day celebrities, but people from when I was a kid and many other famous folks. One of Harlan’s favorites: Wolfgang Amadeus Mozart! Also on the list are Jewish comedian Pamela Schuller, actor Howie Mandel and Billie Eilish, who won five Grammys this year!
I admit that the diagnosis of Tourette’s took us a little by surprise, but it’s nothing we can’t handle together as a family. Harlan and I love Olivia, Benjamin and Rebecca with every beat of our hearts. Our children are our life and they will always be our squishy, happy little babies even when they are at this sullen tween stage.