We're neurodivergent siblings and roommates. Life is complex and beautiful
Caring for my brother has helped me get out of my head and be more present
This is a First Person column by Simone Abrahamsohn, who lives in Toronto. For more information about CBC's First Person stories, see the FAQ.
This summer, I lost my mom and gained a new responsibility.
I'm trying to navigate being my big brother's primary caregiver while also trying to cultivate a somewhat harmonious co-habiting situation for two middle-aged, neurodivergent siblings.
With his infectious giggle, passion for pistachio milkshakes and a keen interest in podcasts featuring violinists, my brother Stuart can be good company. I love him and having him as my roommate. But it's not without its challenges.
In addition to being autistic, Stuart is a left-brain stem stroke survivor. His needs involve being handfed for meals (he has a hand tremor since his stroke), wheelchair-to-commode transfers, and assistance with bathing, grooming, and exercises. He has emotional lability (rapid, often exaggerated changes in mood) and can be triggered by loud sounds.
When we were kids, Stu's extreme introversion, stimming (repetitive movements or noises) and talking to himself would embarrass me when friends came over. At my 11th birthday party, one of my classmates said, "Is your brother mental?" after seeing Stu silently staring and not talking to anyone. I felt embarrassed and sad. In midlife, my heart still aches for my sibling, whose lifelong struggles were — and sometimes still are — misunderstood by the neurotypical world.
The thing is: we're not that different. I've just had more experience with "masking" my ADHD — like practising to sound pleasant and confident on the phone even though I feel like muttering monosyllabic answers — and have learned some tools to manage my own strong emotions — sometimes even with my own brother.
If I manage to keep my ADHD babbling to a minimum (the struggle is real), I won't trigger an outburst from Stu and the evenings will be smoother. If I forget, and have an animated conversation with a friend by phone, or start singing Whitney Houston's greatest hits into my hairbrush microphone, Stu will quickly remind me that this behaviour isn't acceptable in our little co-habiting siblings' home.
I've become well-practiced in downplaying my tendencies to be introverted and my need for breaks from socializing. I presented myself as "the outgoing one" and more of a "people person" than Stu. It's partly because growing up in the 1970s and 1980s, there weren't any online support groups or social media influencers to provide validation and comfort to neurodivergent kids. So I put a lot of effort into disassociating myself from Stu's experiences.
As a kid, I wasn't able to intervene and advocate for him when he got kicked out of school for not submitting homework assignments. Bullying from other students made him withdraw even more. When my parents cajoled and pleaded with him when he refused to join us for family restaurant outings, it only upset him further. Even at 53, I sometimes struggle to accept this as being a common autistic trait and not a personal rejection.
But now I have an opportunity to change that. Being Stu's roommate makes me get out of my head more and be present. I'll sometimes want to share something with him and will talk excitedly, and I understand that even though he remains quiet, it doesn't mean he's not listening. I try to give him as much agency as possible and to be an active participant in the decisions we make, such as deciding what he wants to eat for takeout when I'm too tired to cook.
I can no longer afford to take the acting and improv classes I enjoyed because it's too expensive to leave Stu with a caregiver but that's OK; our relationship is worth it. With some schedule rejigging, outside help from city-provided caregivers and some attitude adjustment, I'm doing my best to create an effective co-habiting situation for two non-neurotypical, middle-aged siblings. Perhaps I wasn't the best sibling for him as a kid, but I'm not going to let this second chance slip through my hands.
Do you have a compelling personal story that can bring understanding or help others? We want to hear from you. Here's more info on how to pitch to us.
ABOUT THE AUTHOR
