My son is one of the GreaTS. I didn’t know this when he first started dragging his foot as he walked. I didn’t know it when he couldn’t hold my hand or when he started turning his head and repeatedly blinking his eyes to watch TV. I didn’t know it when we rushed him to the ER on a cold winter night as we watched the right side of his body jerking over and over again, or as the nurses told us he probably had a drug overdose, or as we waited during a two hour sedated MRI as they searched for the tumor they thought might be invading his brain. It wasn’t in the info packet the doctor gave us at the hospital in New York City where he was finally diagnosed with Tourette Syndrome.
We came home from the doctor on diagnosis day relieved. He didn’t have a tumor or any of the other frightening causes the doctors warned us of. The pamphlets said he would make noise, have uncontrollable movements, and possibly the TS bonuses, OCD, anxiety and ADHD. We asked about treatments and were given a list of medications. The doctor mentioned that some people choose to use therapy like habit reversal but we probably wouldn’t find anyone qualified near us. We didn’t take the script for medication. She handed us our papers and asked us to schedule a six month check up.
My son went back to school and life continued. We weren’t prepared for those first days when the “big tics” hit. He would screech every waking minute, of every hour, of every day. Teachers looked at us in terror as we asked them to help keep him in school. His neck ached from repeated wrenching, simple tasks like brushing his teeth took hours as he followed complicated rituals of movement, sleep became nearly impossible as his body refused to quiet at the end of the day. He began to repeat numbers in his head, erase and rewrite his homework over and over again, struggle to fight the impulse to put his finger in electrical outlets.
Life became very lonely. My son often quieted in public, making his diagnosis seem unbelievable. Friends asked us if maybe we were overreacting. Family refused to say the words Tourette Syndrome and talked behind closed doors about how we were looking for excuses. I stayed up every night searching the internet for causes, treatments and strategies.
My son’s journey back to greatness started with a late night internet search.
My husband came across the NJCTS Psychological Clinic at Rutgers University. They were people that knew about Tourette Syndrome and were doing something about it. We began the registration process the next day. My son had one goal…to meet someone else with Tourette Syndrome. My goals were a bit more grandiose. I wanted someone to tell us what to do. I wanted the REAL guidebook to Tourette Syndrome, not the list of medications from the doctor.
We worked hard at the Clinic, but it wasn’t until that summer that we got to meet other families. At the urging of our therapist, we went to our first NJCTS Family Retreat Weekend.
It wasn’t easy. It wasn’t easy at all.
My son refused to sleep in a bunk room with lots of other people. Meal times were like a round robin of tics setting off tics, setting off tics. We were sleep deprived and anxious. But we stuck it out, reminding our son that he was meeting people like him and that we were getting a chance to ask questions. We asked A LOT of questions. Anyone that would talk to us, we drilled them…How do you go to school? Do you medicate? Do you go to restaurants? The NJCTS staff, volunteers and clinicians patiently answered questions but, more importantly, they saw our son for the person he was, not the distraction of his tics.
If I had to pick one moment, where my life changed, where my son discovered his greatness, it would be the last day of our first Retreat weekend. We gathered outdoors in a drum circle. I watched my son as he banged his sticks on his bucket, following the beat, grinning, laughing. He tic’ed. He tic’ed a lot. But he was happy, and comfortable, and finding his own beat. THIS was what NJCTS truly had to offer.
Over the next five years we called and emailed NJCTS often, asking for doctor’s names or other resources. My son, through the NJCTS Youth Advocate Program, went from being afraid to be in public, to explaining to anyone that would listen, what it is like to live with Tourette Syndrome. We gradually made the transition from always seeking help to being a family that people are referred to by NJCTS for support.
We have walked with our new friends at the NJ Walks for TS events. We continue to attend Family Retreats and proudly raise our hands as one of the families that have been attending for years. My son was privileged to meet soccer star Tim Howard through NJCTS and is counting down the days until he is finally eligible to attend the NJCTS Tim Howard Leadership Academy.
I still research new treatments and dedicate long hours to my son’s clean eating diet. There are still days where I wonder how he, and we, will have the endurance to make it to bedtime. But now, more often than not, our energy and time is dedicated to helping our son access his greatness. He is a percussionist with the Youth Orchestra of Central Jersey. He sings, dances and acts on stage both at his high school and a local theatre school. He is proud of who he is and what he can accomplish. And we will never feel alone in our challenges again.
Thank you NJCTS for being a friend AND family!
The Regen Family
