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First Person Despite his dementia and her autism, my father and my daughter make a connection

Illustration by Rachel Wada

First Person is a daily personal piece submitted by readers. Have a story to tell? See our guidelines at tgam.ca/essayguide.

I touch my father’s shoulder to let him know we’re here, but – for the first time – he doesn’t recognize me. My daughter Charlotte notices and hides a quiet weep. I start to worry. Dad’s memory has deteriorated even in the last month. I wonder whether I should have brought her, but she wanted to see him. Like many with autism, Charlotte is deadly honest and unafraid of difficult questions. However, like most 15-year-olds, she’s not used to watching Alzheimer’s progress so quickly.

In my mind I beg her silently, don’t ask him about dying or memory loss. I wished we’d rehearsed with a role-playing session or social story. But she’s not five years old any more. I can no longer whisper the right responses into her ear. Then I remember that when she asks questions in her trademark forthright manner, people respond in remarkable ways. We’d recently had dinner with a widowed friend and her twin teenage sons. Charlotte asked the boys what it was like to grow up without their father, who died when they were two. Their mother and I fell silent at her question, but the boys, after a beat, answered thoughtfully. Later, my friend told me no one asks them about that.

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Now, Charlotte and my Dad face each other across the empty table. Both look uncertain. My heartbeat floods the silence between them. They seem subdued in this strange environment, a Home that is not a home. My anxiety makes my ears splinter. Charlotte reaches her hand across the table. Dad looks at it for a long minute, not sure what she’s doing. She leaves it there, resting halfway between them. Then instinct kicks in and he grasps her hand: the dignity of a man who knows this gesture is important while not knowing exactly who we are. Perhaps he is responding to the need for a kind touch or – ever the gentleman – recognizing an offering that would be rude to decline. I can’t see inside the workings of his mind. In Charlotte, often a mystery, I see the grace of a girl who has figured out how to navigate societal structures not designed for her. Who recognizes another human’s unspoken need. Who is drenched with love and sorrow for her grandfather. It occurs to me that her daily battle of figuring out why neurotypicals (people without autism) act as they do has given her an advantage in facing these moments that shift our lives.

The two of them remain quiet, holding hands. Every fibre of my being wants to suggest questions they can ask each other. Introduce a topic of conversation about one of their shared interests. Less than a few years ago they would talk endlessly about African animals, the species and genus of various mammals, geography. They each grew up reading encyclopedias, 60 years apart.

Despite all the words in my head, something powerful keeps me quiet. I shut down my internal monologue and look at my father and my daughter. Their body language is relaxed, at peace. Neither is straining to talk. All the tension in the air is pulsing from me alone. It comes to me – I was wrong in my assessment. They are, in fact, neither subdued nor anxious. They are content. I breathe. My toes unfurl. My anxiety spirals around my head and floats away as I observe their tight cocoon of silence and love. And then, out of the silence, the first words.

“I love you, Grandpa.”

“I love you, too.”

He doesn’t speak her name but it doesn’t matter. Names aren’t all that important.

When Charlotte was 5, her developmental pediatrician offered me tissues and told me it was her strengths, as much as her challenges, that helped him diagnose her with autism. Since then I’ve thought of her strengths – her rote memory for example – as her superpowers. Today, in the way she has found to connect with my father, I see a new power – one which has nothing to do with autism.

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My Dad’s thoughts have distilled. He has forgotten about his career, the street addresses where he lived, his work colleagues. But he knows the love of his life, my beautiful mother, and talks of her endlessly whether she’s there or not. He remembers the words to the songs that make him happy; Oklahoma, My Bonnie Lies over the Ocean, Waltzing Matilda. His gorgeous baritone still fills a room, hitting every note. In this home he is the star of the music group. His distilled memory means our conversations are always joyful, only about the good things. I wish we’d always got along this well! It’s easy to take him back to his childhood dog or a loved vacation spot or his brother and sister.

Quite often, people act differently around Charlotte and Dad. Well-meaning people might speak louder, slower, make awkward chatter. Charlotte, like Dad, doesn’t linger on small talk, doesn’t see the point of unnecessary actions. When you start up a conversation with her you’ll probably learn something new within minutes about cel animation or when the Democratic Congo changed its name and why.

Our visit has come to an end. I stand to leave. He turns to me in delight, as if I’ve just arrived. “Why Lisa! How delightful to see you my girl. What would I do without you. You are my sunshine and I thank God for you every day.” Charlotte and I leave with joy in our hearts.

Lisa Alletson lives in Toronto.

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