3 Perspectives on Living with ADHD
A growing number of Canadian men, women and children are living with ADHD. Here are three stories on a misunderstood disorder.
What It Feels Like
By John Hoffman
About a year ago, Sarah Shearman* came across a diary she had kept in Grade 4. One entry read: “My mother wants me to settle down and do my homework! Doesn’t she understand that I need a break? I need to get out of my room! But she won’t let me!”
Shearman, now 26, can’t remember what she did during those long hours in her room. But it usually wasn’t homework. “I’d be in there for hours, and I wouldn’t get anything done,” she says. “Sometimes I’d fill entire pages with doodling.” But Shearman does vividly recall how she felt: frustrated, anxious and, at times, consumed by an overwhelming urge to move. She felt that way at school, too. She was eventually diagnosed with attention deficit hyperactivity disorder (ADHD), but not until Grade 12. Kids who have ADHD often can’t put into words how they think and feel because it’s their “normal.” They don’t know another way to be or don’t realize that other children’s minds function differently. “It’s like your mind shuts down because you have to put so much effort into policing it,” says Nick Weiss,* 29, who was diagnosed at age 11. He describes the difficulty he had trying to buckle down to do school work: “It’s not impossible to make yourself focus, but you have to keep forcing yourself to over and over again, every step of the way. It takes so much mental energy that there’s nothing left to put into doing a good job on your work.”
He recalls how it felt in those moments. “Butterflies in my stomach,” he says. “Anxiety, I guess. But there was more to it-a feeling of mental dizziness, almost like swooning.”
“Anxiety” is a word that Shearman also uses. “I remember being in class and feeling like I was going to explode if I couldn’t get out of my seat,” she says. “My heart rate would go up. I felt like I was crawling out of my skin.” Her coping method was to leave the classroom.
Weiss had a different approach. He learned not to care about getting his school work done. “If I stopped thinking about what I had to do, the dizzy feeling went away, and it was much easier to cope,” he says. The distraction we hear about in kids with ADHD may be a by-product of the incredible mental, and even physiological, effort of trying to sit still and stay on task.
Twenty-year-old Adam Cormac* recalls a different feeling. “I was annoyed and bored,” he says. “I found school unmotivating, so I didn’t absorb the material. Teachers would question my intellect, and I hated that. I didn’t think there was anything wrong with my mental functioning.” Cormac often felt singled out or patronized. “Even well-intentioned strategies-like tapping on my desk as a discreet way to remind me to focus-were irritating,” he explains.
That said, Cormac admits he didn’t often get down to work on his own. The result was frustrated teachers, frustrated parents and a very frustrated boy who struggled in class and seldom engaged in academics until after high school. Now, after a two-year break from formal education, he’s going to university to study political science and economics-topics that really interest him. “I know it sounds simplistic: make school less boring,” Cormac says. “I realize that’s easier said than done, but when I was interested, I could pay attention, and that applies to other people I know who have ADHD.”
Shearman agrees that adults often misunderstand and misinterpret kids with ADHD. “The doctors, my parents and teachers thought my problem was anxiety,” she says. “And it was, in a way. But they thought I couldn’t focus because I was anxious. Really, I was anxious because I couldn’t focus. I tried to tell people that, but they didn’t listen. That’s why it took so long to get the right help.”
Listening to a child with ADHD is one coping strategy that can easily be forgotten. Parents, understandably, often focus on getting their kids assessed properly, agonizing over treatments and finding the right help at school. They also can’t help trying to “fix” their kids to some degree. That means extra supervision, more reminders and teaching the same things repeatedly, all while trying to stay positive.
But trying to force kids with ADHD to be like their peers can wear them down. Weiss urges parents to take the time to understand their children’s differences and accept them as they are, even while trying to help shape their behaviour, so they can thrive at home, at school and in social settings.
“Rather than just talking about how they need to be different or do better, talk to your kids about what life is like for them, without trying to fix everything,” says Weiss. “If your kid says ‘School sucks,’ don’t just try to make him look at it more positively. Have more meaningful conversations than that. Behind the lazy, oppositional behaviour that many adults see in kids with ADHD, there’s a lot going on. Parents should try to find out what’s really beneath the surface.”
*Names have been changed
When to Medicate
By Jessica Leeder
No gluten, white sugar, food colouring or additives; more protein, naturopathic treatments and behaviour therapy.
Partners Shannon and Carol Fitzsimmons* instituted this laundry list of changes when they suspected their preschooler, Jonah,* had ADHD (he was officially diagnosed at age six). The Toronto moms were determined to keep his condition under control naturally.
“Our worst nightmare was that he’d have to go on medication,” Shannon says. They were concerned about the side effects that can result from taking stimulants (the most common class of ADHD medications), including reduced appetite, insomnia and a dulled personality.
By reducing his sugar intake and ensuring his diet was rich in protein (to stabilize his blood sugar and avoid crashes that lead to moodiness), Shannon and Carol noticed that Jonah’s hyperactivity and impulsiveness decreased. They worked on behaviour modification techniques-teaching Jonah breathing strategies and helping him replace negative thoughts with positive ones-that they learned from an ADHD support group at the Centre for Addiction and Mental Health in Toronto.
Despite the progress they were making, Jonah’s moms were being summoned to school weekly to discuss his behaviour and lack of focus. He was climbing on tables in class and pushing kids on the playground. They realized that Jonah had no hope of success in his current state. “We were at the end of our rope and felt we had tried everything else,” Shannon says. “Medicating was the hardest decision we’ve ever had to make.”
Heidi Bernhardt, president of the Centre for ADHD Awareness Canada in Markham, Ont., and a mother with three grown sons who suffer from ADHD, says struggles at school are often the tipping point for parents considering medication. As a child’s success in the classroom decreases, negative feedback increases, stress peaks and self-esteem plummets. While the decision to medicate should not be taken lightly, Bernhardt stresses that parents also need to consider the potential effects of not medicating. “For a kid who has mild ADHD, behavioural training might work like a charm. For other kids who just can’t focus, you’re almost crippling them by not considering medication,” she says.
Doron Almagor, a psychiatrist who heads the ADHD Clinic in Toronto, says that in most cases, medication should only be considered as part of a comprehensive treatment plan when behavioural therapy and educational interventions aren’t effective on their own. It takes time, though, to figure out the right medications and dosages.
Jonah started on Ritalin, a stimulant. At first, his progress at school was dramatic-his focus improved and his outbursts decreased. But at night, he experienced a “coming down” effect as the medication wore off, and he became aggressive with his parents. They went back to the drawing board several times, experimenting with different dosages and combining Ritalin with Strattera. They also integrated other strategies, such as weighted blankets that Jonah could use in bed or place on his lap to calm him so he could stay seated at the table. They created a gym in the basement-with a trampoline, swing and mini-trapeze-to help Jonah pour out his energy. Still, none of that was enough to help him find an equilibrium.
Then his doctor recommended Concerta. The long-active stimulant has been life-changing for the family. “Jonah has more focus overall,” Shannon explains. “He’s still very active, so we continue to use the tools we did before, but it’s so much better-we’re not constantly holding our breath. But there’s going to be a time when he outgrows the drugs. We know we’ll have to go through all of this again at some point.”
*Names have been changed
When a Parent Has ADHD
By Rebecca Dean
Other moms always seem to have basic systems for keeping life on track. They bring a list to the store, pay their bills on time, plan weekend activities, return library books.
Not me. I’m the mom who forgets everything-snacks, backpacks, lunch boxes, snow pants (only once, but it was so embarrassing), field-trip forms. I’ve lost my kids’ birth certificates twice. A low point: for two days I forgot to check that the kids were giving water to their hamster, and she died. I was diagnosed with ADHD at age 38. I had symptoms all my life-I was called “scatterbrained” and a “daydreamer”-but basically held things together. It wasn’t until I became a stay-at-home mother of three that I started to get bogged down by my lack of organizational skills.
Stuff like household maintenance (sorting laundry, putting away toys, planning meals) are important things that I find tedious. Without the adrenalin rush of extreme interest or an immediate deadline, I get bored and stall out, leaving my house in a state of confusion.
I am, however, captivated by my kids. I adore being with them. This is the part of motherhood I’m good at-I’m a fun mom. We play games. I tap into my “hyperfocus” (a common ADHD trait) to help create incredible school projects. We spend hours at the park, running, climbing and playing. (Until I realize I’ve forgotten to bring snacks.)
My kids are in school now, and I’m discovering ways to help myself as I teach them skills I’ve never had. I talk to their teachers and am learning ways to help them keep their clothes, shoes and desks organized. We’ve established routines for putting their bags and coats away. I’ve created charts for my kids-and now use charts to keep myself on track with my own goals. I understand acutely how it feels for them to get to school and realize they’ve forgotten their gym shoes, so I’m doing my best to prevent those minor catastrophes from overshadowing their days.
Being a mom with ADHD is chaotic and humiliating. But it’s also funny (though that’s usually only in hindsight). Most of the time, it’s just frustrating. You live in the moment-not in a Zen way, but rather in a purgatorial way. You may be bright and ambitious, but long-term goals turn into lost opportunities as you constantly get sidetracked from the daily slog of getting there. It’s like you’re a kid yourself, and it can crush your confidence if you let it.
But I’m not letting it. Awareness of the condition has helped me figure out ways to manage it. In my experience, medication to help with focus can play a role, but it doesn’t solve everything. As the experts say, “Pills don’t build skills.” It’s only by forming strict systems to overcome my struggles with ADHD that I have finally started learning how to live like a grown-up.