If you ask him, “How are the tics? Are they bothering you?” he will shrug and say, “I don’t know,” but that’s not quite true. He’s 13 – the tics are intense and he can be driven to tears at times when he feels powerless to control his body or his thoughts. If Tourette Syndrome was his only problem, though, life would be much more manageable.
My son Dylan has a combination of challenges that make life difficult for him and those around him. Our first concerns, when he was in preschool, were social problems. The preschool teachers were worried because he didn’t play with the other children. We suspected he was on the autistic spectrum, possibly Asperger’s because of his advanced verbal skills. A pediatric neurologist suggested “pervasive developmental delays.” His lack of social awareness definitely complicates things since he doesn’t care that his behavior bothers other people.
We took Dylan to so many doctors, trying to find answers. We were concerned about his lack of understanding of social cues and about his attention and impulsivity problems. I read that 70 percent of children with Tourette Syndrome also have ADHD. He is one of those. Honestly, the ADHD symptoms cause a lot more problems in school and in the world than the tics. In second grade, he got pulled out of PE for sometimes wandering away from the group and other times spitting on, punching and pushing other children.
We have been through the roller-coaster of medications. There were those that helped with attention but made Dylan unable to eat or sleep. In sixth grade, medication made him less impulsive but he was falling asleep in class and struggled to walk half a mile. Some meds seem to control the tics a bit, but I sometimes wonder if the medications do much good. The way to test it is to take him off – then the tics and impulsivity go through the roof. I feel like we’re medicating him to keep him out of trouble. He tends not to hurt other students when he’s on ADHD meds.
Dylan was in first grade when we brought him to a second pediatric neurologist. The doctor’s diagnosis? “Tics.” Looking back, Dylan has always had tics. As an infant, he squeaked when he nursed. I thought it was unusual (no other babies did this) but never thought it meant something was wrong. A psychologist who observed Dylan in his preschool noted that he threw his body repeatedly against the pillows.
I don’t remember a gradual increase from eye blinking toward more complex tics. The first official TS diagnosis was probably in 2005. The earliest written record I have is a tic severity checklist I completed in 2006. I observed 10 different tics over the course of a week, including both motor and vocal tics. At the bottom of the page I wrote, “# tics in 15 min. = 200.” The tics have definitely gotten more severe over the past year. A couple of months ago I completed a rating scale from the Yale Child Study Center. On a scale of 1 to 100, Dylan scored 82. One research study of children with TS required a score of 22 or higher to be eligible.
The most difficult tics for people around Dylan are the extreme ones, where he flings his arms in a way that’s dangerous to anyone close by, or makes constant, loud noises that are irritating even to me. The hardest tics for him are the ones that damage his skin to the point of bleeding or make him unable to walk or talk properly. He has suffered from severe stuttering on and off this year. Another problem is the OCD behavior – the compulsions are so hard to handle. I always advise teachers not to say “Don’t do ‘x’,” because then he will feel compelled to do it.
I wish there were a magic bullet that would cure Dylan of his problems. Unfortunately, there is no such thing, but a supportive community can help us cope with life’s challenges.
Hello Julia,
I am so sorry that your son is having such a difficult time. I completely understand how you feel and hope that in some way that gives you some comfort. I know I feel very comforted by knowing there are others that completely understand what I am feeling and how our emotions can be all over the place depending on the day. My daughter also has vocal tics and a throat clearing tic which when exasperated makes it difficult for her to speak. When this happens I feel desperation because I know how frustrated she gets. I don’t know if you son has tried this but when this happens, pausing and taking a few deep breaths to relax definitely helps. The great news is that you son is really young and although it may seem at this moment as if things will not get better, the prognoses for his future is in his favor. So hang in there and remember we are all here for support.
I wish you and Dylan the best. It’s definitely a tough road. I’m a firm believer though in the research that says he will get through this in time. I know that doesn’t help in the moment but I use that as a mental crutch of sorts when times get difficult. Hang in there.
K