Autism & Grandparents
The Dig
January: time for no-nonsense renewal. Out with the old, in with the new. On that note, I’ve been consumed with helping my mother clear out her condo and move into a retirement home. Sound familiar? If you’ve been doing something similar, you know what it means… Lots and lots of sorting and many discoveries: photos, ticket stubs, lists, trinkets, sketches, letters, travel mementos and assorted bits. And lots of decisions. What to do with all of it, the sum total of a life well lived? Well, you distribute it.
The other day I brought home a stack of photos and some artwork, things I couldn’t part with, and evidently, neither could my father, aka, Poppa. There in the top drawer of his filing cabinet was a folder, and in it, pictures of his grandchildren, their art, hand-drawn cards for Poppa (and Gramma), samples of clunky, preschool printing and rudimentary stories. I brought the file home and lay it on my son’s bed. Erik is 23, and when Poppa died, Erik was just a young boy, seven, in grade two and freshly diagnosed with autism. Erik’s memories of his grandfather are murky, mostly through pictures and videos. And now, a connection through this stack of artifacts.
That Poppa kept his preschool art and primary progress reports touches Erik deeply. That Poppa clipped out articles about autism makes Erik pause and look up at me. Poppa took the time to find out, to understand, is what we’re both thinking. He did, and many grandparents do—or want to.
The Effect
I am not a grandparent, I am a parent, and I see the effect my parents have had on my three young adults: dispensers of wisdom, love, time, patience, belief and fun, and on the flip side, receivers. My parents have taken the time to listen. They have generously given their time because they had it, when often, I did not.
When one or more of those grandchildren has autism, well, the grandparent effect is magnified, not only for the child, for the parent of that child who needs to know that they do not walk alone.
I talk about this—and more—in What’s Not Allowed? A Family Journey with Autism. Autism is most certainly a family journey, and grandparents play a key role in helping to shape the best version of their grandchildren.
“I’m sure that with your care and direction, Teresa, Erik will do just fine. One step at a time,” my mother tells me, holding out a brightly coloured plush object she has stuffed and stitched. It’s a plump figure eight made out of purple, green and yellow scraps of felt.
“W-what’s this?” I ask, pinching the soft double loop.
“An eight!” Her tone is matter of fact. Can I not see what it is? I am about to ask the next logical question, “Why?” when she jumps in.
“Haven’t you noticed that Erik loves the number eight? He says it all the time and he prances. It excites him, so I made him one. It’s Erik’s eight.”
Erik is beside himself that he owns a number eight. Gramma’s intuition and straightforward offering expresses to Erik that she values what he values. And right now, this is all I need.
“Don’t look too far ahead,” she says to me. “Focus on this road. You’ll travel the others in time.”
What’s Not Allowed? A Family Journey with Autism pp. 100-01
As for my my father, Poppa:
“Erik will surprise you!” my father says to me, eyes twinkling, because he sees what I dare not see. He sees brilliant splinters cloaked in something enigmatic, but he sees the good and he appreciates Erik. I love my father for bravely speaking outside of projection and stereotype; for tuning in to his grandson; for speaking with unswerving belief, and for saying those four words: “Erik will surprise you.” I hold these words very close to me. They fuel my conviction and stoke my resolve. They also become Erik’s go-to guiding light: Erik. Will. Surprise. You. Four simple words that become our default and our source of faith.“
What’s Not Allowed? A Family Journey with Autism p. 100
The Letters
In the fall of 2021, the Canadian Military Family Magazine ran an article entitled “Military Spouse Creates Website for “Anyone Curious about Autism” The feature details my reasons for creating a website and offers insight into What’s Not Allowed? Following this online post, I received messages from readers across Canada, and curiously, many of the emails were from grandparents of children with autism. And they all had the same question:
How do I connect with my grandchild with autism? What is my role? I feel so removed from my grandchild. I want to understand him [her]… Can you help me know what to do?
The Strategy
To which I replied, “I remember my mom and dad felt the same way with Erik. They wanted to know how to connect with him. They tried to come close, to draw him in with stories or baking or certain toys, but he often ignored them, content to run and examine his fingers and shriek about what fascinated him: shadows and clouds and signs and flags and light.
So that’s when they changed tactics. Instead of engaging him with what they thought a boy his age might like, they began to notice what he was noticing…and they celebrated with him, identifying and making shadows, pointing out cloud formations, collecting “what’s not allowed?” signs with him…letting him take the lead. When they did that, when they showed Erik that what interested him interested them, that changed everything. He had collaborators, teammates, believers and listeners. And most of all, he felt understood—and valued.”
As the home team—grandparents included—we tuned into what drew Erik in: symbols and signs, fans, flags, whales, weather, planets, objects and their shadows, the human body, maps and globes, the Queen, and genealogy. We went all out, collecting, displaying and talking about what Erik loved, and by doing this, we celebrated a family member. We never considered forcing Erik to like what others preferred. We encouraged him to specialize at a very young age and live according to what captivated him.
The Role
So when an auntie from Vancouver Island wrote and told me that her nephew with autism calls her every Monday and fills her with stories about his week, I applauded her for listening and for celebrating alongside him. And when she asked me what her role is with her twenty-four year old nephew, the answer was simple: Keep doing what you’re doing. Keep listening. Keep being interested. Keep being his champion.
Ditto that to grandparents: Keep tuning in and keep noticing. Stay curious, stay connected and take time to celebrate fascinations and firsts, big and small.
Circling back to my father, Poppa and young Erik hit it off because they both appreciated life’s fleeting details—like shifting shadows and the onset of cirrus clouds and the light spectrum as it struck Poppa’s wine glass and splashed across the wall—and they loved playing inside of those fascinations, together.