A Voice Unheard

By Hoda Egeh

“Happy birthday to you, happy birthday to you, happy birthday, dear Sami, happy birthday to you!” The year was 1997, and it was a particularly festive day. Colourful streamers and balloons adorned every inch of our house, which was teeming with guests. I remember feeling envious of my two-year-old brother—even though I was three years older than him and far more capable. Despite my feelings, I made sure that he had an enjoyable day. If that meant purposely losing during musical chairs and giving him most of my piñata candy, I was more than willing to do so.

Only half a year later, our relationship would change drastically. I wouldn’t even be able to make him laugh or smile anymore, let alone get him to look in my direction.

At first, we thought that he might’ve lost his hearing, but a trip to the family doctor would prove us wrong. My brother went from being emotionally, physically, and verbally responsive to the complete opposite. He lost his ability to speak, along with his limited social capabilities. He rarely made eye contact when we called his name. Most of his actions became repetitive and obsessive, like lining up his toy cars and eating the same lunch day after day. He was violent and emotionally unstable, and that trait stuck with him as he grew.

Over the years, as I began to grasp the complexities of regressive autism (the deterioration/regression of language and social skills in young children, typically ages one and two), I saw his outbursts as his way of communication. He couldn’t explain when he was hungry, tired, or sick, so he would try to get our attention the only way he could. My family and I often complained about how difficult it was raising Sami, but we rarely thought about how misunderstood, vulnerable, and helpless he must have felt, and how different his view of the world must have been.

This was a whole new territory for my parents. My sisters and I were unruly and rambunctious, but we didn’t have special needs, or require constant supervision. With Sami, every day was a mixture of trial and error trying to find ways to communicate with him. We had to learn the many differences within the autism spectrum disorder and how disadvantaged Sami was compared to other children with autism. They could speak and demonstrate adequate social skills, which meant that they could attend regular schools. Their future didn’t look as bleak as Sami’s because he couldn’t do any of those things. We had so many questions, but the one question that echoed in our house—and still does—was: How? How did Sami completely lose his speaking and social capabilities? What caused this drastic change? Everyone had their own theories, as did we, but the answer remains a mystery.

One Sunday afternoon, when I was seven years old, I asked, “Mama, why is he doing that?” My brother was twisting a piece of string around his chubby index finger. He had been doing this for hours.

“I don’t know, honey. Maybe it makes him happy?” Occasionally, he would grunt or make a sound of irritation if he lost his grip. My mom and I watched, transfixed, as he wound and unwound the string. If my mom didn’t grab his hand and lead him to the kitchen for dinner, he would have continued all day. Still a child myself, I didn’t understand the depth of my brother’s disorder. All I knew was that he wasn’t “normal.” Whenever my friends came over to play, they would stare at him and his bizarre actions. They would look in disbelief as he banged his head on the table and bit his hand forcefully. I hated my brother during those moments. Why did he have to embarrass me in front of my friends? Why couldn’t he be normal?

There are good days when Sami is somewhat responsive and attentive. On these days, he laughs at the silly faces that I make to entertain him, he doesn’t pull away when I lean in for a hug, and he even tries to say a few words. He repeats words sometimes—short words like “mama” and “ball”—with encouragement. “Is that a good sign?” my mom had asked his doctor during a monthly check-up many years ago. His doctor, a pediatrician with a specialty in autism, said it was common for those with regressive autism to imitate words and phrases. I remember glancing over at my brother then, feeling hopeful for his future. I leaned over and said “high-five,” wiggling my fingers as I waited for his hand to touch mine. Smiling to himself, he pressed his palm up against mine and held it there, staring directly into my eyes. I liked to pretend that he could read minds; that was the secret superpower that he was gifted with when autism took away his communicative abilities. I’d have conversations with him, talking about things like school, books, and television shows. He would always mention Spongebob Squarepants, going on and on about how amazing it would be to live in Bikini Bottom. I knew that it wasn’t real, but I didn’t mind. I just wanted to feel close to my brother, and for things to be the way they were before.

My mom would always say, “It could be worse.” She saw the challenges of life as tests from God, challenges that she believed could be overcome with determination, patience, and faith. I tried, but failed to see my brother’s disorder as a positive thing. Since we'd found out about Sami’s autism when he was quite young, we were led to believe that early intervention was the best time for recovery, and that he still had a chance at reversing the effects regressive autism had on his mind. We tried everything: physical and speech therapy, dietary alterations, and even holistic methods.

The many doctors we associated with all had one thing in common: they weren’t entirely sure how to deal with a child who had an autism spectrum disorder. Treating autism seemed more like an experiment to them, an unsatisfactory method that left our family, and many others, in the lurch. There’s a finality to regressive autism; hope for a “cure” isn’t realistic. Though our family exhausted every medical option and spent thousands of dollars trying to help him, in the back of our minds, we knew that our attempts were futile. We left the truth unspoken.

My mom put on a strong face, but Sami’s autism hit her the hardest. He was her baby, and she wanted to shower him with love, but it seemed as though he wanted nothing to do with her. He cringed when she tried to hug him, and fussed whenever she attempted to bathe him or comb his hair. Caring for him became a full-time job. While dad became the sole breadwinner of our household, she quit her secretarial position and spent 18 years raising Sami to the best of her abilities. Her optimism wavered over the years, and I hated seeing her so dejected, but I didn’t know how to lift her spirits. I would tell her to “have faith,” but I didn’t even believe my own words. It’s hard to have faith when your prayers aren’t answered, and you spend a lifetime wondering why life is so cruel.

Today is Sami’s 18th birthday. My mom baked him a Spongebob Squarepants cake topped with pineapple-shaped candles; she bakes him the same cake every year. He’s happy, giggling to himself. He picks the candles off, licking the icing expertly. I’m constantly thinking about Sami and how bleak his future looks, but on his birthday, I think happy thoughts. Like how Sami guides my hand to the cake knife to cut a portion of his cake while licking his lips, how he hums along when I sing the Spongebob Squarepants theme song. As he looks up at me smiling, I remember something I read: “Autism is like walking around with your nails cut too short and your shoes on the wrong feet. Every single day.”

In our neighbourhood, Sami is known for his disability. He is sometimes referred to as “the kid with autism.” But he’s much more than that. He’s passionate and warm. What he can’t express in words, he makes up for in mannerisms. His condition has made us stronger as a family and better as people. I, for one, aim to be more empathetic, understanding, and kind to everyone—regardless of disability. I’ll never understand what my brother experiences every day, but the least I can do is try to make the world a happier place for him: a place where I can be his voice and he can feel secure, loved, and understood.