'No one believes me'

Andrea Boulden says life with her son Liam, 8 (in photo right), who has Tourette syndrome, is a heart-stopping rollercoaster. Although Liam doesn’t have significant tics – repeated noises and movements that can be hard for a person with Tourette’s to stop – he has associated conditions that make it hard to regulate his emotions, moods and anxiety, leading him to provoke others or lash out at them physically. Because he looks typical, “people assume he’s a bad kid or attribute his behaviour to bad parenting,” Andrea says. She finds the invisible nature of Liam’s disability – and how others react to it – most challenging.

Me: How does Tourette syndrome affect Liam on a daily basis?

Andrea Boulden: His tics are minor, but he has trouble regulating his emotions, mood instability, anxiety, obsessive-compulsive disorder and attention problems. So he really has a combination of a neurological disorder and mental illness. When he’s in a really anxious state, he can be loud and obnoxious, swear, provoke someone, hurt the dog or walk up to his brother out of the blue and punch him. Last night he choked a child at Cub Scouts.

Me: How do people react to his behaviour when it’s not apparent he has a disorder?

Andrea Boulden: There’s an assumption that he’s a bad kid and we as parents are bad people. When he was younger at daycare, I remember the other parents were really nice at first, and then when they saw what Liam was like, they wouldn’t speak to us again. They would look away from us. One day another kid told Liam: “My mom said I’m not allowed to play with you because you’re bad.” Parents judge us and everyone gives us advice. We’ve had people tell us we should spank him like it’s the gospel. Because he’s been in behaviour classes and many of the children there have experienced neglect or abuse, we’ve been treated as if we’re in that category. “What’s going on at home?” we’ve been asked. Even staff at different schools have questioned whether Liam has Tourette syndrome – suggesting he has a bad attitude.

Me: How do people’s negative reactions affect you?

Andrea Boulden: I feel like I have to constantly justify myself and get people to believe me. It’s mentally and physically draining. Every time Liam walks into a room I have to explain to everyone: “Just so you know, he may do this, or he may do that.” I’ve often thought it would be easier if he used a wheelchair or had something visibly different – just so people would believe me. Next year he’s going to a brand new school and I’m terrified of all of the people I have to convince that he has a legitimate medical condition – and isn’t just being manipulative. There’s a feeling that no one understands: no one in the outside world understands what we as a family are going through.

Me: What practical advice would you give other parents of children with behaviour issues caused by a neurological condition or mental illness?

Andrea Boulden: The only thing we can do is to educate everyone around us. Our job is to educate the schools, educate people in the community, educate other parents. I have a one-pager about Liam that I give to everyone at the school. In the past, I haven’t given it to parents of his classmates, but I’ve heard this is a good idea and it’s my plan for next year. It will include a photo of Liam and explain the symptoms of his disorder and what other children can do to show compassion and be a role model for him. It will also note the benefits of children learning to value difference and tolerance.

Me: How can other people be more supportive of your family?

Andrea Boulden: If it’s a stranger, perhaps they could smile, instead of looking at us scornfully. I wish people would ask me questions. I find there’s something taboo about children with behaviour issues and mental illness. No one knows what to say and no one wants to talk about it. It’s similar to when someone dies. People will see Liam explode and me in tears, and just carry on as if nothing happened.

Me: What resources have you found helpful?

Andrea Boulden: I’d recommend The Explosive Child by Ross Greene, a pediatric psychologist who teaches at Harvard Medical School. It presents a collaborative problem-solving approach where kids sit down with their parents and talk about what they’re feeling and find ways of planning what they can do differently the next time they’re feeling that way. It’s a bible for families like ours. Greene has another more recent book called: Lost at School: Why Our Kids with Behavioral Challenges are Falling Through the Cracks and How We Can Help Them. The Tourette Syndrome Foundation of Canada has also been an incredible source of support to our family.