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Growing Up With Tourette Syndrome
By Elizabeth Lee

Bay Area Mom and Child Share Experience and the Will to Succeed
“Your son,” my son’s teacher told me shortly after he started second grade, “often twitches his head to one side, makes facial grimaces, and makes noises in the back of his throat that distract the other students. When I tell him to stop, he won’t.”

“He can’t,” I told the woman.







What is Tourette Syndrome?

It is a genetic, neurological disease characterized by vocal and motor tics. There are often other symptoms, such as learning disabilities, attention deficit disorder, impaired fine motor skills and impulsiveness.
Her eyes clouded over with confusion and her mouth dropped open in surprise. “He has Tourette Syndrome.”


Tourette syndrome, which my son, Dale, inherited from me, is a genetic, neurological disease characterized by vocal and motor tics. Dale has other, commonly concurrent symptoms as well, including learning disabilities, attention deficit disorder, impaired fine motor skills, and problems with organization and impulsivity. Other common symptoms are obsessive/compulsive disorder, depression and being hot-tempered. Tourette is not life threatening, and the tics tend to come and go over time. They are caused by a chemical imbalance in the brain that causes messages to be sent involuntarily to certain parts of the body, including the vocal cords, to move. The tourettic person experiences these imbalances as irresistible urges to tic. There is no known cure. 


Just ask Dale


I knew since before Dale was a year old that he was smart. He started building a vocabulary by 10 months old and has always had a knack for mechanical things. He picked the locks on my bedroom and bathroom doors, with forks and knives that he got in spite of the “child proof” devices I’d installed on the kitchen drawers, shortly after he turned 2. Privacy was hard to come by until he learned some manners. By the time he was 8, if I had trouble working the video cassette recorder or other electronics, my husband would say, “Just ask Dale.”


But when Dale started kindergarten and could hardly write letters, let alone words and sentences, I thought I had been blinded by my own maternal pride, that maybe he wasn’t really that smart after all. In addition, his impulsive behavior became a problem for his peers and yard duty personnel during recess. He charged kids with his tricycle, chased them in an attempt to get them to play, and in general wasn’t picking up on the subtle social nuances that other kids do as a natural part of growing up. 


Since I had just found out that both Dale and I have Tourette, I was still in the dark about all the ways it affected us or how I could help him. For his first two years in school, it was my deep, dark secret. His tics were mild enough that they weren’t much noticed. 


No More Secrets
I contacted the Tourette Syndrome Association (TSA) and educated myself about how to advocate for Dale at his school. Then, because his tics got worse, his schoolwork was poor, and I realized he might be learning disabled, I wrote the school principal to request that Dale be formally assessed for special services. She tried talking me out of it at first, but I held my ground and politely but firmly insisted on it.


Other TSA parents, I learned, had less positive experiences with schools. Staff was more resistant to having the kids assessed. They weren’t willing to accommodate kids in or out of the classroom. Even after being presented with letters of proof from doctors, the school staff insisted that the kid’s tics were just a form of misbehavior. I also heard horror stories about  kids being medicated; that lead to my resolve not to medicate Dale


Tests Prove Mom was Right


When I came in for the meeting to learn the outcome of Dale’s assessment, I was handed a paper with Dale’s I.Q. scores. After taking a moment to study them, I looked up at Dale’s teacher, the school psychologist, principal and special education teacher seated with me around the table. “B-but,” I stammered in disbelief, “most of these scores are two or three standard deviations above average.”


“Yes,” said the psychologist. “He’s gifted, and he’ll need special services to address his needs as an intellectually-gifted child.” I had not been blinded by maternal pride after all, and I soared with elation. “But,” she continued, “here’s his handwriting score.” She pointed to where it sat like a rock, one-third of standard deviation above the bottom. His audio and visual tracking and sequencing score was also two-thirds of a standard deviation below average. “He’s learning disabled and will need special services for that too,” she said.


Dale was put on an Individualized Education Plan (IEP) where his writing and math assignments were reduced by 50 percent. From then on, he received resource room help and in-class accommodations, which helped his school performance tremendously


Trouble with Friends
His peer relationships were another matter. Dale was outgoing and loving, but the kids teased him because of his tics and avoided him because of his rowdy impulsivity, his lack of inhibition, and because he was, well, different. He got along better with adults. At the time, he also had long hair, which wasn’t the style.


I asked a TSA parent, who was a Hasidic Jew and whose son wore forelocks in front of his ears, if she thought I should cut Dale’s hair so the kids would accept him better.


“What kind of a message do you think you would give him if you did that?” she asked. “You would only give him the message that it’s OK for the other kids to ostracize him because of his hair, and it’s not.”


So the long hair stayed until Dale eventually decided to have it cut on his own.




Dale’s school said they didn’t have the resources to offer him group counseling. When I looked for outside services, they were non-existent. I myself had difficulty learning the art of interpreting or giving subtle social cues and knowing how to maneuver appropriately within a social arena. Now it was up to me to teach Dale all the subtleties of social innuendo that I felt so inept at myself. Being a licensed marriage and family therapist, it was a humbling feeling.


My first step was to speak before Dale’s classmates about Tourette in the hopes that education would bring about more tolerance among his peers. It didn’t. When I asked Dale if he wanted me to speak before his class at the start of another school year, he said, “No way, that only makes the teasing worse.”


Little Support from Other Parents


Families rarely asked Dale for a play date. Whenever Dale called to make one, the families usually made up excuses for why their children couldn’t play. Dale also rarely got invited to birthday parties.


One day, when yet another parent had refused to schedule a play date for Dale, I stood stirring some food at the stove with tears running down my face while Dale looked on, wide-eyed. Even though being rejected disappointed him, he seemed to take it in stride. I was the one who couldn’t stand the silent shunning. Whenever I went to his school, most of the parents avoided me. Once when a group of us arranged to take our kids trick-or-treating on Halloween, they changed the meeting place without telling me. They had their own social network and didn’t want us to be a part of it.


This brought back painful memories of when I was 10 and had two best friends. The mother of one of them, “Mrs. Smith,” didn’t want me playing with her daughter anymore because I struggled in school with undiagnosed learning disabilities and made funny noises and movements. She encouraged her daughter to verbally bully me. My mother tried talking to Mrs. Smith, but it did no good. Her girl became best friends with my other best friend instead and, with Mrs. Smith’s encouragement, turned her and the rest of my friends against me. I became a social outcast.


The Pattern Repeats Itself
Now all the parents of the kids in Dale’s class were, in my mind, Mrs. Smiths, and I couldn’t bear it.




“Are you the one being ostracized by your classmates, or is Dale?” my best friend asked when I confided to her all my anger and frustration. “Let him work out his own karma. He’s the one going through this, not you.”


Toward the end of Dale’s third grade year I couldn’t–wouldn’t–take the social ostracism anymore. Doing nothing had gotten Dale nowhere. I wrote a letter to the third-grade parents at his school. I explained Dale’s Tourette, the situation, and asked that they encourage their children to accept Dale. I made specific requests of them regarding scheduling play dates and telling their kids to stop teasing and rejecting Dale at school. I asked them to take the high road of tolerance and acceptance for Dale’s disease.


I printed 78 copies, one for each third-grade family, and mailed them. I knew that if I hesitated, I’d change my mind, that I’d kick myself for it later and think, “Oh God, how could I have done such a thing?”


In response, several parents called or sent supportive notes. The situation didn’t change overnight, but I had peace of mind knowing that, even though I couldn’t change the other parents or their kids, I had at least opened a channel of communication.


Now Dale is 13 and, with the exception of his taking one elective in middle school, is being home schooled. Although he is in G.A.T.E. (Gifted and Talented Education), he still struggles with homework, focusing and organization. As he’s matured, his impulsiveness has greatly improved; so has his social life.


One of the things I have learned is that having a spiritual approach helps. Tourette, like any other disability or illness, teaches people to have compassion. It is the brave, strong soul, the person made of sturdy stuff, who takes on such a life challenge and survives. Since we were given the disease, we learned that we can handle it and grow from it.


Read parent Elizabeth Lee's tips on  managing and coping with Tourette Syndrome.




Elizabeth Lee is a writer and licensed marriage and family therapist. She lives in the
South Bay with her husband, two children and pet rat. She can be e-mailed at liz@funghi.com.
From Bay Area Parent, a United Parenting Publication, October 2003.


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