As a patient-oriented research network, CHILD-BRIGHT’s success hinges on active partnerships and meaningful collaborations between our members, from patients and their families to researchers, health professionals, and decision-makers in health care. Across the network, around 70 patient-partners regularly collaborate on research projects, sit on committees, and actively contribute to the research on childhood brain-based developmental disabilities happening across Canada.
This series is a result of conversations that took place earlier in 2020 with five of our patient-partners. By sharing the experiences and motivations of some of CHILD-BRIGHT’s partners, we hope to stimulate ever-growing connections across our projects, programs, and committees, and better understand the variety of experiences that these individuals bring to bear on their partnerships with us. First up is our conversation with Sharon McCarry, which took place in January.
A Big Lightbulb Moment
“A big lightbulb moment.” That is how Sharon McCarry describes the impetus for her decision to join the Strongest Families ND program three years ago.
It was a moment that was a long time in the making. After giving birth to her younger son Colm in 2003, she began to notice, with some concern, that he was not hitting developmental milestones at the same pace that her older son had. So began a long and winding road to receiving his autism diagnosis. It was during the diagnostic process that she was asked to join the Pathways in Autism Spectrum Disorder (ASD) study, one of the world’s largest and longest-running studies of the development over time of children with ASD. The diagnosis was finally confirmed in 2006, when Colm was three and a half years old.
Through her involvement with the Pathways study, in 2016 Sharon was asked to sit on a conference panel about the provision and navigation of services provided by governments and community organizations for families with children with ASD and other disabilities. The day of the panel, as she took part in the discussion about the benefits and challenges of delivering services, she realized there was a missing piece in the conversation. It felt very one-sided.
(Pictured: Sharon and Colm in Ottawa in 2019)
“No one was talking about policy and what that means for longevity,” Sharon explained. She asked a pointed question at the end of day summary: Of the research being done, planned or discussed, was any of it going to be linked back to policy changes that would change the lives of the children being studied? The answer was no, so she replied: “If it’s not making change, why are we doing it?”
Lucyna Lach, one of the Principal Investigators of the CHILD-BRIGHT Strongest Families Neurodevelopmental Program, was a participant that day. Lucy later contacted her and invited her to partner with the program. Strongest Families ND explores whether emotional and behavioural regulation can be improved in children with neurodevelopmental disabilities through a parenting program that includes telephone support, paraprofessional-to-parent coaching, and education and resource information sharing.
It’s been a rewarding experience for Sharon, for whom the research world has at times been isolating and frustrating. She says she has found a different community and attitude altogether at Strongest Families, where along with other people from across Canada she sits on the Parent Advisory Committee: “I love the fact that we get together with a diverse group of very strong advocates from across the country, and we are being not talked down to,” she shared.
““We’re changing the way that [patient-partners and researchers] are actually communicating. We’re trying to make sure that we are partners in the real sense, and that it’s not just one-sided, and I think that really makes a difference.” ”
That partnership and active and open exchange are important since, as Sharon points out, parents of children with disabilities don’t always feel heard when interacting with medical professionals or academics: “That’s just life when you’re raising a child who’s mostly non-verbal,” she says. “I think that is how a lot of parents of kids with special or complex needs feel. We can experience that our children are invisible.”
Mother and patient-partner are only a few of the hats that Sharon wears in her own life, however. Following a successful career as a marketing director, after Colm’s diagnosis she founded Coco’s Place at The Little Red Playhouse (La Fondation Place Coco) in 2008. She relaunched the defunct Little Red Playhouse, a parent co-operative in Montreal West that had welcomed Colm two mornings a week with an aide when she was looking for a program that would allow him to socialize in his early years.
Since then, Coco’s Place has become a not-for-profit, federally registered children's charity and manages the Little Red Playhouse, now an inclusive preschool with a program that welcomes neurotypical children and children with ASD or language disorders. Their core program runs until 1 p.m., after which they offer Applied Behaviour Analysis (ABA), speech and language pathology, and occupational therapy programs on an optional basis.
After 12 years at the helm, Sharon has seen the impact the program has had on the children and their siblings. Many of the neurotypical children who took part in the program are making choices to embark upon health care or research career paths, she says, choices influenced by the preschool’s integration of neurotypical children and children with ASD according to their parents. “It’s really, really cool, to see the empathy that you created,” she shares. “Because they don’t see a disability, they just see kids.”
(Pictured: Sharon and her son Colm visit her uncle in Exuma, the Bahamas.)
Sharon has big plans for the future, too. Colm is now 16, and her advocacy work has shifted in focus. She has been working towards a community housing project for people with autism, as well as a program for older people with ASD. Policy and public service work are still a priority for her as well. She was recently appointed by the Minister of National Revenue to be a committee member on the federal Disability Advisory Committee for a 36-month term. And here at CHILD-BRIGHT, she continues her work with Strongest Families’ Parent Advisory Committee, of which she now has been a member for over three years.
Through it all, her belief in the importance of parents “giving back to the academic community” has persisted: “Our voice adds a richness to academia that wasn’t necessarily considered before these initiatives [like CHILD-BRIGHT] started happening. I do think richness in a conversation means more inclusion, and that’s something I think that is very important,” she explains.
Finally, as a mother who lived through the early years of early intervention, she emphasizes how Strongest Families offers hope to parents: “We talk about hope for parents of newly diagnosed children, and how we can communicate that the effort put into early intervention ends up having greater outcomes. That’s really something important, as is the hope that we’re giving parents that life can get better and possibly easier. Hope is very important.”
Thank you to Sharon for sharing her thoughts with us and allowing us to learn more about her journey and the perspective that she brings to our research network. Interested in joining our network? Contact us.