Tourette’s isn’t just tics

Tourette’s isn’t just tics

January 13, 2015 - 7:00 am
Mom says her child is prone to angry outbursts
Earlier this week, I interviewed the mother of a 71⁄2 year old boy who has Tourette’s Syndrome. Her son was diagnosed a little over two years ago, just as he was starting school. She shared her journey with me.

Christel: How did the diagnosis of Tourette’s Syndrome come about for your son?

Parent: Looking back, he always had sensory challenges. Sleep has always been difficult for him. As a one-year-old at daycare he would not sleep in a crib but would sleep in a bean bag. Cribs were not a place he liked to be. His daycare workers also discovered that only if they played certain types of music would he fall asleep. It wasn’t colic. He has always needed some deep pressure on his body to fall asleep. As he got older, his ability to socialize with his peers became challenging. He would have an abrupt reaction if someone was in his space, for example. I saw differences at home; the daycare saw differences between him and his peers, so we sought out a referral to see a pediatrician, who gave us the diagnosis.

Christel: What was receiving a diagnosis of Tourette’s Syndrome like for you?

Parent: It was not surprising. Due to my background in health care, I had done a lot of reading. He has a family history of anxiety and obsessive-compulsive disorder. So I was more prepared for something like that. I wasn’t stunned by the label; I could then understand more of how he was feeling. It also gave me a way to explain his behaviours to his school, for example. The diagnosis helped us realize that he has differences and that there are solutions to help with those differences.

Christel: What would you tell a parent of a newly diagnosed child?

Parent: Your child is still your child. His or her personality is still his or her personality. All children have uniqueness, behaviours and traits. They are who they are. Some children are easy, some are hard. With Tourette’s, there are strategies and avenues that will help.

Christel: What has been helpful to you as a mother?

Parent: Talking with other parents of children who have Tourette’s Syndrome.

Christel: What would have made or would make the journey easier?

Parent: More supports for my child. It is difficult to access the help of a pediatric psychiatrist. Although there are social workers, counsellors and psychologists, it would be most helpful to have the specialized help of someone who can talk to my son and teach him that the negative thoughts that come with his Tourette’s don’t make him a bad person. His negative thoughts are often of him hurting himself. It would be helpful to have someone else who can talk to him about what such a diagnosis means for him and what is happening in his brain.

Cognitive Behavioural Therapy is a good approach with him. More CBT child-specific strategies would be good. I use my own brand of CBT at home to help him cope and realize these negative thoughts are not him, just his brain getting sticky again. It seems to work when he can tell me exactly what he is thinking.

Educators also need to know about the sensory piece. The biggest positive impact for him is what to do if he is upset. Don’t touch him. Give him a safe, quiet spot to calm down. Anything else will just wind him up. And that Tourette’s isn’t just tics. He has a few facial tics, but more outbursts and (instant) rage.

Christel: What would you like his friends or peers to know?

Parent: I don’t think his friends or his peers need to know his diagnosis. But it would be good to also have schools teach that everyone is different. My son has sometimes dropped a friend because something happened “by purpose” as he calls it. Sometimes he needs time alone, time to calm down, time to come around. And having his peers understand that would be helpful. He has rage outbursts more than tics... or those are like his tics.

Christel: Why is it important to you that this interview is anonymous?

Parent: People need to know a whole lot more about Tourette’s Syndrome but my son is very private and I need to honour that. The people in his life, who need to know, do know.

A few more thoughts from the mother at the end of our interview: My biggest goal is to build up his confidence. He is a sweet boy who wants to please. I would say that he is a likeable, energetic child who loves his friends. He’s now able to engage with peers more successfully because of the resources we’ve been able to tap into. He has really come out of his shell. He used to sit only on my lap during daycare “performances” and now he will stand in front of people; he is experiencing life out of his comfort zone. I always tell him how impressed I am with him. Now, if only he could just sleep!

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