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Things My Brother Sam Can’t Talk About

Anna with her siblings

Photo credit: Kelly Valeri

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 that 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 here to 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 that 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 that 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 that 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.”

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27 thoughts on “Things My Brother Sam Can’t Talk About”

  1. Kimberly Rittenhouse

    Sam’s love for Jesus has touched my heart in a very special way! The 4 years I worked with him in the classroom were some of my most special days. He’s been such a blessing to my life and so many others!

  2. Very well written. It was enlightening to me - afraid I'm like one of those Uber drivers who don't have the understanding to bring to such a conversation. Now if your brother had schitzophrenia, I could speak with understanding because I had a brother who suffered with that. The best we can do with the inexperienced is try to give them understanding. Thanks for broadening my understanding of what daily life with Down syndrome looks like. Blessings on your studies.

  3. Wow, Anna, you are an amazing writer!! Sam is so lucky to have you as his big sister. Sam brought joy to me every morning when he was in my homeroom in 8th grade. I love his smile and his inside jokes. He would tell me he had tacos in his ears😂😊

  4. Anna your article was wonderful! Sam is a true blessing and I've loved working with him during his high school years. Sam is so blessed to have a loving, compassionate, & dedicated family to meet his needs. I know he loves music and always has a smile on his face!

  5. I was Sam’s P.E. teacher at Panorama. He made me smile then and he continues to do so when I see him at the YMCA. Great piece, Anna. Since I have a son with a disability, you communicated so many of my thoughts about the future.

  6. Anna, we have only met once, but I get the privilege of seeing SAM almost everyday at Grace Prep. I have wondered some of the same things as I have worked with Students with disabilities over the years. One of the beauties of Sam’s life is that he is so friendly and constantly engaging, and that, I believe, is a direct result of those who have loved him through his years of development. Well done! Here is to all of us standing in the backyard in our Fruit of the Loom’s!!😊

  7. Peggy Shutes Kaiser

    Anna, what a wonderful article! I remember Sam loving Johnny Cash’s “I’ve Been Everywhere!”, while in my music class. He sang it loud and strong.

  8. Thank you Anna for writing this wonderful article. We just love having Sam at Taproot Kitchen. Who else sings while doing the dishes? Patrick and he are great friends , there is definitely magnetism there.

  9. "He is certainly no angel" I laughed out loud at that and cried through the rest. I knew Sam from working at his middle school and In his classroom my last year there (his 8th grade year) I learned more that year about patience, humility and true Joy than I did from any other experience I've ever had. It's a privilege to know Sam. 💖

  10. I feel truly blessed and grateful to know Sam! I have had the pleasure of beginning and coordinating support services for him and he is an absolutely unique person who brings joy to many people’s lives! Thank you for your research and continued work. Most importantly, thank you for sharing your story of life with Sam.

  11. Anna, I loved your essay on Sam! It brought back so many memories....white bread peanut butter sandwiches, no crust, until the year we had fresh fruits and vegetables everyday for snacks (some a bit exotic) and Sam dutifully tried a bite of each. I could go on and on about Dr. Suess, not wanting his parents in school and no teachers at outside activities, the “disappearing” hand, and unfailingly his emotions written on his face....mostly in a smile. You and your family were a joy to work with and Sam a blessing to all. Hope he is still enjoying those root beer floats!

  12. This is so well written. Genuinely, brought a tear to me eye! Working with Sam during my internship was something I will never take for granted. Working with him every day truly made me a better person. I will always love and appreciate his honesty and his ability to joke around better than I can. Thanks for sharing this!

  13. Thank you for writing this beautiful essay about Sammy! I met Sammy about 5 or 6 years ago when in JennyLee 's room ! What an amazing boy ,I used to take the class to lunch many days and let me tell you Sammy and all the kids made me feel so special and still do ! I love working and being with these kids and thank Jesus still everyday! Thank you for telling us all theses wonderful and insight into to Sammy life ! I love this kid and all the kids I had the pleasure to get to know ! Some days when you feel down and I would go into class room and some that could not speak would give you a big hug or smile or other ones would say Angie your the best ! I don't have to say anything else! I am

    blessed ! Thank You Jesus and thank you !

  14. Beautifully written, Anna!
    I loved reading your article about Sam. You are truly blessed and I love the diversity of your sweet family.

  15. This definitely hit home with me. I have an older brother with Downs Syndrome named Raymond. He is the joy in our family. He does have dementia and reading your article reminded me of the Raymond I remember. I often wonder how he is feeling and what he is thinking as this terrible disease progresses. The hope I hold onto is his love for His and knowing the He who created Raymond can communicate his love and peace in ways that I would never be able to. Thank you for sharing and reminding me what I have....not what I had...because I still have Raymond and I want to cherish every moment and every memory we still have

  16. I thoroughly enjoyed reading this. Thank you for sharing the gift of your writing and perspective.

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