We donate a percentage of our profits to the Tourette Syndrome Association of America.
Our son, Sam was diagnosed with Tourette Syndrome when he was almost six years old, after watching him blink his eyes, shrug his shoulders and hop up and down. When he first started having tics at about two and half/three years old we thought that they were related to allergies, and we thought they were cute. Fast forward a few years and he was diagnosed with Tourette Syndrome. About nine years later our youngest child, Annie, was also diagnosed with Tourette Syndrome after watching her tic off and on for a few years. She was seven when she was diagnosed.
Over the years Sam had mild tics to the outside world, but tics aren’t always seen by the average person. He worked hard in the classroom to keep his tics hidden and found that sometimes the OCD that came with the Tourette Syndrome helped him on the sports field – where he learned to use both sides of his body evenly much faster than most kids his age.
He never experienced coprolalia (the involuntary and repetitive use of obscene language – only experienced by less than 10% of people with Tourette Syndrome) something people always ask him if he’s had.
When Annie came we really learned that Tourette Syndrome has all kinds of flavors. Although, like Sam, Annie’s tics are still fairly unnoticed by the outside world, if you don’t know what tics are, but her TS presentation is still a little different. We have two kids with Tourette Syndrome in our family and although sometimes they “share” tics with each other because tics are suggestable to people with Tourette Syndrome, they still have their own flavor of Tourette Syndrome.
By middle school most of Sam’s obvious outward tics were minimal. He continued to deal with the OCD component of Tourette, but not the hand washing and overzealous cleaning kind of OCD that people like to think all people with OCD struggle with. In high school the tics and OCD increased and after a harder year with it, he decided to become a Tourette Syndrome Ambassador and although his outward tics are again minimal he now teaches about Tourette Syndrome in an effort to increase awareness and to let people know that even though there is a wide range of symptoms for people with Tourette Syndrome, they’re still just every day normal kids, like him. He loves playing basketball, hanging out with his siblings and friends, reading books, and personal fitness – just like other kids his age. He is also a Tourette Syndrome Camp USA counselor.
Annie is still coming to know what Tourette Syndrome is and will be for her. Her tics wax and wane as tics do, but for now we find that when she’s spending more time with people, because she’s a people lover, her tics are lower. Her doctors thinks she might be subconciously surpressing tics when she’s around people. We also think it’s because she’s happiest when she’s with friends and family.
I love watching Annie and Sam together when they do what we affectionately call tic flirting – when they tease back and forth with their tics.
Here is a speech Sam gave about what it’s like to live with Tourette Syndrome. It’s motivating. It’s real. It’s beautiful, and it’s life.