I was 4 or 5 years old when my younger brother was diagnosed with autism. The day isn’t memorable to me, but what I do remember is the struggle to understand and explain my brother’s disability. In elementary school, my cousin’s next door neighbor saw Michael stimming and asked, to no one in particular, what was wrong with that boy? Wanting to protect him from any discussion or criticism, I lied and said he was too young to speak. The discussion ended there.
For my college entrance essay, I chose to write about Michael because I thought it would evoke sympathy and admiration from the reader. Surely the admissions officers would understand my struggles by reading about Michael running away from me or me dealing with the idea that my younger brother’s life would be so different from my own. These ideas were unjust because they didn’t show how much Michael had developed, and would continue to develop, as a result of busy days and positive attitudes.
When I got to college, my freshman English professor asked for an essay on a world event that directly affected our lives. I decided to write about the “autism epidemic” and how it had affected my family. Again I wrote about how I felt bad for my brother and how anxious we were when he ran away. I got the essay back with a resonating question: Where was Michael in this essay?
Where was Michael in this essay? Did my professor not understand that he’d run away and wouldn’t reappear until my neighbor found him in paragraph four? Had she not read that far? Not quite. She meant my paper lacked Michael’s character and the connection we had. My claim — having a brother with autism was hard — didn’t fully communicate the love I had for my brother and the love he had for me.
Sometimes the stories we tell others are the ones we think they want to hear.
In my revision, I chose to focus on the more important parts of the essay, the parts that captured Michael’s personality and depicted our relationship as siblings who contribute to each other’s lives and support each other. This is the story I’m trying to make clearer to myself and to others. It’s what I would tell myself from the beginning, had I always recognized his innate value and had I always had faith that others would respect and love him just as my family does.
Michael doesn’t differentiate family from friends. After my brother brought one of his friends, Brianna, to the house for the first and only time, Michael told my parents “Brianna’s coming home soon.” He asked about it for weeks and mentioned it anytime my brother’s return was brought up. Michael’s understanding was that Brianna was part of the family simply because she visited and was my brother’s friend. His perception extends beyond this occasion. When my boyfriend comes to my family’s house, I ask Michael, “Is Alex a friend or a brother?” Michael responds emphatically that Alex is a brother.
In preparation for holidays, Michael has his own unique lists. Not of gifts but rather he lists to my mom who will be in attendance. As my cousins are getting older and beginning their own families, the entire family is rarely together, but Michael remains optimistic that we will all be present. We sometimes think his fixation on everyone being there is strange, considering he usually spends most of Christmas Eve watching movies in another room. Yet he’s undeniably happy at my aunt’s house when everyone is present. Our presence is a gift he values, despite having a disability that’s characterized by a lack of social skills. This is humbling.
Being present is something Michael does each and every day. Currently, he’s in a day program. He goes there five days a week, attends after school programs, plays on a basketball team, works out with my dad at the gym and has at home ABA therapy three times a week. In spite of all this hard work or because of it, he’s usually in an upbeat mood. Productivity helps him thrive. It’s usually during the lulls of stay-at-home vacations that he may struggle or get upset.
As a lazier sibling, I get to hear about or witness his busy weekends. This leads me to a long line of questioning and action. What can I do to feel fulfilled? How can I make my weekends and my life more purposeful? The thoughts have motivated me to pursue running, volunteering and searching for meaningful work.
Michael makes me and my family laugh and smile all the time. He combs his hair and then immediately messes it up maybe because it’s uncomfortable. After he wakes up in the morning, he lists bakery items he wants my mom to buy, anticipating sweets and future holidays. He tells my aunt to go home on Thanksgiving. Everyone else has left and he wants to be alone. Michael says and acts with neither hesitation nor disdain. His motive may not be to make others laugh, but the unique ways he sometimes expresses himself are cute, brave and honest.
To make his Holy Communion in the Catholic Church, Michael had to first complete reconciliation. Confessing his sins seemed totally useless to me and my mom. We wondered what sin could he have committed. He doesn’t lie or harm others. He doesn’t steal or judge. As far we know, he’s always committing small acts of kindness like packing my dad’s bag to go to the gym or setting the table for dinner. The simple moments improve our lives.
My recognition of Michael’s incredible presence has taken time to develop, and it’s become more distinct as I get older. I’ve stopped thinking of his life as a backdrop and one that only deserves sympathy. I’ve begun to acknowledge who he really is and reflect on his positive influence on my own life and the lives of my family and friends. I’m grateful for this new perspective and for having a brother who is so pure, loving, hardworking and full of joy.
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