by Lisa Bachman
as told to Julie Weingarden Dubin
When our youngest child, Justin, was 11, he was diagnosed with Tourette syndrome (TS). Justin always had tics, but they were misdiagnosed as allergies or oppositional defiant behavior. It wasn’t until age 11 — when he developed coprolalia, the involuntary utterance of obscene or swear words — that Justin was formally diagnosed.
Justin also has severe ADHD and dysgraphia, a fine motor skills disorder that results in an inability to write legibly. He’s always in pain from tics in his shoulders, hip and ankles. His vocal tics can startle people, but because of the education we’ve done, his peers at school get it and leave him alone. Justin has learned how to advocate for himself.
People with TS are not faking it. They don’t have control over their bodies. They have a medical condition. But Justin learned the hard way that kids don’t always understand that. In grade school Justin was picked on, and for two years he wasn’t allowed to go out on recess because he was seen as having a behavior problem.
Due to the intolerance Justin faced, such as kids saying, “Quit it” or “Just stop it,” we’ve done a great deal of educating. We meet with all his teachers prior to school starting. We also wrote a script and we ask the teachers to read it on the first day of class, first thing. When they do this, we find that Justin has very few problems.
Justin’s been bullied and teased many times but the worst situation happened when Justin was 12. He was at a cross country meet and the officials disqualified him because they thought he was trying to be obnoxious. Thankfully, we had educated his teammates and they tried to stand up for him. He was still disqualified, but it really helped Justin to recover because of the support he had from his friends.
Justin realized that if he was facing intolerance because he was different, chances are other people were as well. He decided our city needed a Tolerance Fair to learn about people’s differences. In March of 2011, Justin created the fair and invited 48 charity and advocacy organizations. The second fair was held this past March.
Today, Justin is in 10th grade at a public high school. Justin has a few good friends that mean the world to him. Now that he’s learned to feel good in his skin, he’s had a much easier time making friends. I own a promotional marketing company, but now I’m more focused on my job as executive director of Honor Good Deeds, a nonprofit our family created in 2006 to serve as a resource center for people facing challenges.
Speaking up for others — despite his tics — has motivated Justin to pursue a future career in public speaking. As a Youth Ambassador for the National Tourette Syndrome Association, he’s spoken to over 15,000 students.
I always worry about Justin but it’s definitely gotten easier. When he was younger, I used to simply pray that he’d make it through the day. I’d get anxious hoping that nothing would happen. I’ve learned how to trust him and I know that he can deal with what life throws at him.
Knowing that Justin’s body doesn’t cooperate with him and that he’s always in pain, I often wonder how he’s able to wake up with a smile on his face. Justin somehow manages to have the world’s greatest attitude and he inspires me every minute of every day.
Connect with other people facing similar challenges and advocate for your child — no matter how hard it is. If you don’t agree with a doctor, question it. If the doctor is offended by your questions, leave and get a new doctor. Your child is worth the fight!
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