Every morning I drink my coffee from a mug that says, God gives the hardest battles to the strangest soldiers. This is not a typo, although, I’m pretty sure it’s supposed to say strongest soldiers. My son, Ethan, was 11 years old when he made the mug at the hospital where he stayed when his tics and OCD made life unlivable.
His tics started when he was three, and he would drop to his knees after every few steps he took. He dropped to his knees hundreds of times a day, and when he began jumping in the air and landing on his knees, we put knee pads on him. Over the next few years, he developed numerous compulsions – rewriting, redoing, re-erasing as well as rituals involving us; we needed to say or do things repeatedly in just the right way, or he would tantrum. Hearing his own name became a trigger for his tics and rituals, and he would rage whenever anyone addressed him by name. We tried different medications with little change, and we felt alone and powerless to help our son as he repeated, ritualized and raged.
Our neurologist diagnosed him with OCD and said to keep TS on the radar, so we called NJCTS and they made sure we found a therapist and introduced us to other families going through similar struggles. Because of NJCTS, we were officially not alone in this fight.
By age 10, Ethan became highly anxious and angry as his tics worsened. He needed to touch things with his tongue, like his desk at school or the floor, and it was followed by fits of a spitting tic. He repeated his own words and anything someone said to him, and he also began to develop head and neck movements, shoulder shrugs and eye blinking. He developed other tics that were really embarrassing to him. Our neurologist gave Ethan a dual diagnosis of TS and OCD. Things were deteriorating at school, so NJCTS sent in-service presenters to his school, so teachers and kids would understand Ethan and TS.
By the time Ethan turned 11, we’d lost all function in our family. Addressing him directly would send him into a long rage. We communicated using post-its, until he couldn’t tolerate seeing the post-it. Our doctors referred us to Rogers Memorial Hospital in Wisconsin, a residential treatment facility specializing in severe OCD, tic and anxiety disorders.
The thought of sending our son half-way across the country terrified us, but NJCTS was there again connecting us with parents who had done just that, and with a doctor who had personal experience with the hospital. These conversations gave us the courage to get Ethan the help he needed.
Ethan is 17 now. Every day he fights tirelessly to keep his OCD at a manageable level. It’s something he has to push back against at all times, and it’s hard, unrelenting and exhausting work. As soon as Ethan was well enough, NJCTS trained him as a Youth Advocate and encouraged him to speak in classrooms to children about TS and in hospitals to medical professionals where he shared his journey. For the first time, he felt empowered, as a result of all he’s been through.
Thank you NJCTS for making a difference in our lives. I can’t imagine where we would be without you, your amazing services and support. I tell Ethan all the time that he’s the strongest person I know. And because we are well enough now to live life and even to laugh, I remind him that the hardest battles go to the strangest soldiers.
Through collaborations, research and education, NJCTS leads the way in providing support for thousands of families like the Ledermans. Please celebrate this season by giving generously to help us continue to make services available to all kids and families touched by Tourette Syndrome. Your gift will help us reach more families and bring to light the greatness that we know exists in all our children.
Faith W. Rice
Founder & Executive Director