'The hardest part was not knowing': Rothesay mom shares son's journey to ADHD diagnosis

When Kate Wallace's son Gusstartedwalking before he was nine months old, sheknew somethingwas different.

"I could never take my eyes off him," said the Rothesaymom, who described Gus as a stubborn baby who stood out for his energy level."He just wanted to move and go."

The trend continued when Gus was a toddler. He would havetantrums and was rough with other children. He wasoblivious to his surroundings while he played.

"People would say, 'Oh, he's just a boy, all kids have tantrums,'" Wallacesaid. "It felt like we were struggling more than the average person.

Doubted themselves

"My husband and I would look at each other and be like, 'What is wrong with us? Why can't we handle this one kid?'"

Last May, Gus, who is now six and in kindergarten, was diagnosed with attention-deficit/hyperactivity disorder, or ADHD, a behavioural condition that may consist of a variety of problems, including poor concentration, impulsive behaviour and hyperactivity.

The couple had spent eight months fighting for a proper diagnosis for Gus.

You feel like you're all alone in this.- Kate Wallace

"The hardest part wasnot knowing we were completely devastated by this," Wallace said. "We felt like we were out in the wilderness."

She said the first sign of a system failure was inSeptember 2015.The coupleenrolled Gus in a private school that included a junior kindergarten program and hired a private educational assistant for their son.

Within a month, he was kicked out because hewas seen as a danger to other students.Wallace described it as a shock.

"We were thrown into chaos," she said.

Gus was referred by hisfamily doctorto a pediatrician. From there, Wallace requested to see a developmental pediatrician, who wouldfocus on children with developmental disorders.

A full-time pursuit

While they waited, the couple deployed other resources as well, includinga psychologist and an occupational therapist to determine what was wrong.

Eventually, Wallace quit her job to be with her son full time, while the couplespent thousands of dollars trying to pinpointa diagnosis.

Almost a year after his diagnosis, Gus enjoys playing with hisLegoand venturingoutside, where he enjoys playing with his parents.

Gusis on and off medication, while his parents decide what's best for him. But it was a long road to that point, with several disappointmentsalong the way. And Wallace still worries about the future.

"As a parent of a kid with ADHD, Idon't feel there is a system, Ifeel like it's this vast landscape of unconnected silos," she said."You feel like you're all alone in this."

Help for other parents

Sarah Gander, ageneralpediatrician in Saint John,is looking at ways to improve the lives of children who could be living with a behavioural disorder such as ADHD. In her research, she's also hoping todecrease hospital wait times for families withinthe health-care system.

Wallace ishoping Gander'sresearch will help other parentsembarking on a similar journey, making the system more efficient for parents.

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Gander says some children can wait three months to a year to see a doctor abouta diagnosis at the request of a parent, school,family doctor andsometimes even within the local emergency room.

Gander said childrenwhogo undiagnosedare often struggling in school and need helpfroma guidance counsellor, resource teacher ortutor.

"Finally people throw their hands up and say, 'This isn't working, we need to go see a doctor,'" she said. "And then lo and behold, I'm supposed to figure them out in an hour consultation when they're obviously a very complex person."

She said on many different occasions, all a child needs isa learning assessment orto have an analysis oftheirmental health.

"How many of these patients come to my office and I'm not the one they needed to see?" she said. "That is frustrating for the family and costly for the system and creates a waiting list, so I don't end up seeing the patients as quickly as I need to see them."

InsideherSaint John office, pediatricianssee about150 referrals a year, and Gander said there aremore across the province.

Patients looking to receive a diagnosis can beas young as three and as old as 17 and about to headoff to university.

"[We're] trying to understand the path that people have to go through, either to get to us aspediatriciansorafterwards, when they come to find out that they need to see another community organization or agency," she said.

The Goal

About three years ago, Gander started collecting data that she hopes willimprove the system.

Onceshe's finished collecting, she plans to distribute her findings across the province to help in fields such as medicine and education. She's also hoping the data will be used at conferences.

"I decided this was madness and we need to better understand how to direct people because the problem is common," she said.

Parents tend to be at the mercy of the system, particularly the healthcare system.-Sarah Gander

She said thedataconsists of a variety ofcases,referrals of behavioural problems, as well as the services patients had to access before and after a referral.

She said thiswill help family physicians, nurse practitioners to become better equipped on where to send patients who might have ADHD or other behavioural issues.

"It's a really nice interprofessional topic," she said. "It's our job to try to make [the system] better."

She's also hoping her findings willhelp parents like Wallace.

"Parents tend to be at the mercy of the system, particularly the health-care system," she said. "I think it's time to really bring in the families as part of a care model."