We used to tease my mom for being different. Today, I understand what made her special
Her undiagnosed neurodivergence has shaped my approach to work and parenting
This First Person column is the experience of Jennifer Fane, who lives in New Westminster, B.C. December 3 is the International Day of Persons with Disabilities. For more information about CBC's First Person stories, please see the FAQ.
Playing cards was our beloved family activity — our favourite game being contract whist or "Oh Hell," as we called it. My mom loved playing cards. Well, the social aspect of it anyway. I love cards, especially the competitive nature of them. We butted heads every single game. It seemed to me like she was wilfully not paying attention to the rules of the game or estimating the amount of hands she would win. Arguments easily erupted, tempers flared and everyone's patience was tried.
But, this was also just a thing I was used to with my mom. Everyone in my family knew my mom was different. We would tease her for time blindness and regularly taking hours longer to do things than she would estimate. Or her system of remembering tasks that included notes taped all over walls and doors and stapled to her backpack.
Growing up, I often felt frustrated when she struggled with what to me seemed like those basic tasks. She would shrug it off, and point out the things she was great at, which were many. Her patience, kindness and empathy for everyone around her had no bounds.
My mom completed her master's degree when I was a small child, inspiring me to pursue my own degrees. Despite us both entering professions in public service — hers nursing and counselling, and mine education — our journeys were different. I struggled to understand how it took her nine years to complete a master's degree even though she was not working, while I completed a PhD in six years while working full time, also with a small child.
I couldn't understand how someone who was obviously intelligent and hardworking seemed so incapable of doing seemingly day-to-day tasks, like meeting deadlines, following multi-step directions and reading maps, that seemed so effortless to me.
It wasn't until my career took an unexpected turn and I found myself working at a nonprofit organization that supports neurodivergent learners that so many aspects of my mom's personality, strengths and stretches made sense. As a teacher and professor, I had experience supporting diagnosed children and young adults with learning and developmental challenges, but this new role immersed me in the world of neurodiversity. That's when I realized the extent to which learning differences went undetected, and the impacts this had on middle- to late-aged individuals and their families.
With more awareness of neurodivergence, the rates of diagnosis of autism, ADHD, and a number of learning disabilities such as dyslexia in children and youth continues to climb. More adults are also getting diagnosed later in life. Commonly, this happens when a parent is supporting their child in receiving a diagnosis and realizes through the process, they are also neurodivergent.
As I met and supported families in their diagnosis journeys, I realized that there is also another category of individuals who are impacted: people like me who were raised by undiagnosed neurodivergent parents.
All of a sudden, so many of my experiences and memories of my mom made sense. Why she couldn't estimate what hand of cards would win or lose. Why as an eight-year-old I was the one putting together the paper crafts for my Sunday school lesson instead of her. Why, at age 10, I was the one reading maps and figuring out directions to local hockey arenas for my siblings' games. Why at 25 I was rewriting and typing her annual Christmas letter because her ideas were not logically sequenced.
Now armed with my new professional knowledge, concepts like dyscalculia (learning disorder in math) and written output disorder were so plainly evident in my mom's struggles in day-to-day life. So were other challenges, such as executive functioning (higher-order cognitive skills used to control and co-ordinate cognitive abilities and behavior) in her struggles, such as planning and time management. It all finally made sense.
Eventually, I asked if she thought she might have learning disabilities. That's when she shared that several colleagues had encouraged her to undergo a psychoeducational assessment — the same routine assessment used to diagnose learning disabilities that she would have recommended to her own clients. When I asked her why she hadn't, she revealed she was too scared to find out if she was "stupid."
I was surprised and deeply saddened. Unfortunately, feeling "stupid" is a common experience for individuals with undiagnosed learning differences. But I never expected my mom, who understood what a learning disability is and supported those with them, to be so afraid. The years of pain, shame and fear were clear on her face. All I could do was try to reassure her while feeling such stinging shame for being so unsympathetic and callous about her challenges.
I now look at so many of my mom's struggles and see a wealth of strengths. Those nine years working towards a master's degree? That was her unwavering perseverance to her profession and wanting to help others. Sure, she likely had dyscalculia, but she also had heightened verbal and reading abilities. Writing was a challenge but that didn't stop her from writing cards and letters for her loved ones painstakingly; that was the depth of her care.
As I started my own journey as a new parent marred in uncertainty and anxiety, my mom's affective empathy — a strength for many neurodivergent people — which allowed her to shine as a mental health clinician, brought us closer together than ever before. And these lessons in empathy, patience and understanding others different from myself have proven to be the most powerful tools my mom could have gifted me as a parent supporting my child in finding his way in the world.
About 22 per cent of the Canadian population has a learning disability.
My mom never got diagnosed. She had workplace accommodations but she never fully embraced her neurodivergence before she died two years ago. I try not to dwell too much on what I could have done differently. She was an amazing mom and grandmother, and now I just want to help other people I meet through my work understand that their parents are also amazing in their own way.
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