If you ask him, \u201cHow are the tics? Are they bothering you?\u201d he will shrug and say, \u201cI don\u2019t know,\u201d but that\u2019s not quite true. He\u2019s 13 \u2013 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.<\/p>\n
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\u2019t play with the other children. We suspected he was on the autistic spectrum, possibly Asperger\u2019s because of his advanced verbal skills.\u00a0A pediatric neurologist suggested \u201cpervasive developmental delays.\u201d His lack of social awareness definitely complicates things since he doesn\u2019t care that his behavior bothers other people.<\/p>\n
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.\u00a0Honestly, the ADHD symptoms cause a lot more problems in school and in the world than the tics. In second\u00a0grade, he got pulled out of PE for sometimes wandering away from the group and other times spitting on, punching and pushing other children.<\/p>\n
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\u00a0grade, 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 \u2013 then the tics and impulsivity go through the roof. I feel like we\u2019re medicating him to keep him out of trouble. He tends not to hurt other students when he\u2019s on ADHD meds.<\/p>\n
Dylan was in first grade when we brought him to a second pediatric neurologist. The doctor\u2019s diagnosis? \u201cTics.\u201d 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.<\/p>\n
I don\u2019t 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, \u201c# tics in 15 min. = 200.\u201d 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.<\/p>\n
The most difficult tics for people around Dylan are the extreme ones, where he flings his arms in a way that\u2019s 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 \u2013 the compulsions are so hard to handle. I always advise teachers not to say \u201cDon\u2019t do \u2018x\u2019,\u201d because then he will feel compelled to do it.<\/p>\n
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\u2019s challenges.<\/p>\n