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The Communication Challenges My Brother With Down Syndrome Faces Each Day

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When my younger brother, Sam, was 14 years old, he went outside, stripped to his white, Fruit of the Loom underwear, tipped over a plastic wagon and yelled, “Uh-oh!”

He was re-enacting a scene from the movie “Cloudy with a Chance of Meatballs,” though no one in my family knew it at the time.

His proclivity for rewinding, rewatching and memorizing scenes from his favorite films suggested to his early teachers that he may have both autism and Down syndrome, but as he grew older, his deficits in sensory processing became less pronounced.

Nevertheless, his capacity to understand has always surpassed his ability to communicate with us — he could sign before he could speak, he could sing before he could string words into sentences, and he could echo back entire movies before he could invent his own expressions.

Abstractions like geography were especially challenging to communicate. When a beloved aunt moved to Montana, he took Montana to mean “missing, lost, gone.” We’d tell him, “Holly’s in Montana,” and he’d reply, “The milk is in Montana.” The milk is gone.

Now 22, he still speaks in a strange tangle of second and third person. “Anna has to go back to Baltimore in January?” he asked me recently. I’m not certain what he thinks I’m doing in Baltimore, but I’m sure he has no idea that I’m researching what causes his intellectual disability.

Explaining my research to Sam seems impossible, when, in fact, I still haven’t figured out how to talk to my extended family and Uber drivers about it. Conversations with the latter always leave me somewhat baffled.

“People still get Down syndrome these days?”

“Those poor kids. What a hard life.”

“The little angels are so happy all the time.”

I guess I take for granted that I hardly remember what it was like not to have a sibling with a disability, because I struggle to be patient when replying to these comments. I tell myself that their instinct to catastrophize, romanticize or infantilize stems from ignorance and not from malice, but sometimes my retort comes too sharply. Sam isn’t perfect, and he’s certainly no angel, but he’s not a burden, either. He’s not inspirational just for living with a condition that he didn’t choose to have, any more than I can be proud that I was born with blue eyes and detached earlobes. He’s flawed, like all people, but he’s not broken, and the good outweighs the bad.

So I say what I hope will convince them he’s human. I tell them that Sam loves oldies and hot dogs and national parks, and that he only realized Montana was a place when we visited Glacier and Yellowstone. I say that he knows cities by their sports teams and that he roots for the Red Sox because of a line in the 2003 thriller, “Paycheck.” He never forgets an inside joke and still teases me about a bowl of broccoli I dropped on the floor 15 years ago. As a child, he once ate the silica gel packets that specifically say, “Do Not Eat” and was terrified by automatic toilets. He can bowl a perfect game in Wii Sports, beat all the levels of “Angry Birds” and recite what every member of my family drank with dinner three weeks ago. He tells me I’m beautiful and cute and sweet, and when he says it, I really believe him.

But most often, the Uber ride ends before I manage to convey any sense of nuance. How do I explain that having Sam as my brother is the hardest and best part of my life?

Sometimes I think about how a microscopic error in one cell propagated an extra chromosome to the trillions of cells in my brother’s body, and I’m amazed that something so small could have brought me to study here at Johns Hopkins. Sam altered our course not just once at his birth, but every day since. Perhaps constantly adapting to his needs is what people mean when they ask me whether having a sibling with a disability is burdensome, but to my family, it’s instinctive and an act of love.

We do get the odd stare, a mix of curiosity and mild disapproval, and our family portraits resemble intentionally diverse stock photos. When asked about our family composition, I usually end up explaining the Korean one was adopted, the one with Down syndrome was not, and the Indian Malaysian married into the fold. Maybe what I really should say is that my family’s diversity is an asset, and our uniqueness is our greatest strength.

Sam excels where I fall short, and in truth, I envy the ease with which he lives. He radiates honesty while I’m hard to read; he remembers everyone’s names while I barely glance at their faces. He makes friends easily while I’m quiet and aloof. He’s naturally joyful while I eke out my happiness with intention. He’s guileless and kind, not distinguishing between people by age, race or title. His life is hugely challenging and equally triumphant.

But as I get older, I worry more about what his future holds. I used to recall Sam’s backyard movie re-enactment with a laugh, but now I think of Jake Edwards, whose neighbors called the police when he went outside without clothes and who now serves as autism ambassador to the Montgomery County Police Department. I think of Robert Ethan Saylor, the film buff with Down syndrome who suffocated when his larynx was crushed by off-duty sheriff’s deputies at a Frederick County movie theater. I think of Eric Torell, the young man with Down syndrome and autism who was shot and killed by police for carrying a toy gun.

I think of Sam’s eagerness to please and worry that he could be manipulated. I think of how hard he works for every gain and wonder if he’ll develop dementia. I remember how long it took my family to notice that spicy food gives him heartburn, and I doubt that he could tell us about a serious illness. I know he doesn’t have the vocabulary to talk about abuse, and I hope that it never happens.

People with Down syndrome are encouraged to advocate for themselves and to speak up about their needs and desires. The cry “nothing about us without us” declares that people with disabilities deserve a say in the decisions that affect them. But what does self-advocacy mean for a person who doesn’t really know he has Down syndrome? The height of Sam’s self-advocacy is ordering his own food at restaurants and choosing what kind of T-shirts to wear, and his ability to communicate, while always improving, is like that of a young child.

When I was 3 years old, I cried, “My knees hurt! My knees hurt!” every time I entered the meat department of the grocery store. My parents were perplexed.

I couldn’t tell them that I had nightmares about the paper-wrapped packets of venison in my grandmother’s chest freezer. They didn’t know I imagined that the rattle of our old bathroom fan was Mr. Dunderbeck grinding rat sausages up in the attic.

It was months before my parents realized that seeing the myoglobin-stained liquid pooling under the meat and feeling the squish of plastic-wrapped flesh left me anxious and weak-kneed. “My knees hurt” was not a cry of pain, but an attempt to communicate my jelly legs and unease.

Sometimes I worry that Sam is perpetually trapped in the frustration of not being able to convey his deepest thoughts and feelings. Every so often, he brings up an event that happened decades ago, before he could even speak, and it’s like his language ability has finally caught up to some sentiment that he felt years before. What is he experiencing now that he’ll learn to talk about in another 10 years?

It’s bittersweet to realize that there are things I will never know about my brother. What does he dream about? What does he think happened to our pets who died? Does he know why he can’t drive, why he doesn’t have a cellphone or why he hasn’t moved out of the house? What does he want from his life? If it were up to him, would he choose to have Down syndrome?

But asking him seems out of reach, and when I try, it doesn’t feel so vital anymore. A few months ago, I quizzed him over dinner, “Sam, do you have Down syndrome?” He giggled and took a sip of his root beer before replying with an emphatic, “Mhmm!”

“Sam, do you have any friends with Down syndrome?” He began to list his friends, but none with Down syndrome. “Yes, Sam, you have so, so many friends.”

A version of this story originally appeared on John Hopkins’ Biomedical Odyssey.

Originally published: July 5, 2019
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