When I was a child, I was eager to help care for my older sister, Mikey, who had profound developmental disabilities, was non-verbal, and blind. Whether one calls her needs special, additional, or extraordinary, Mikey required more time, attention, and accommodation than I did. That’s just the way it was. I knew, without being told, that I could best support my parents by assuming the role of assistant caregiver—a sort of miniature parent. Many of my memories of those days are vivid and sweet and I recalled them in my memoir, Mikey and Me – life with my exceptional sister.
When Mom went out to play cards, I helped my dad watch Mikey. First, I checked the kitchen and then swept through each room. More than once I found her in the bathroom sitting on the floor smiling and giggling, rummaging in the bottom cabinet. She would have happily stayed there all night, but when I asked, she’d get up and leave the room. I took my responsibility seriously and made rounds regularly. If all was quiet and I had finished my homework, I watched TV with Dad. I’d sit on the left arm of his green Naugahyde recliner that he’d pull close to our Hoffman TV. A small glass ashtray rested on the right arm. We watched Lakers games and the Harlem Globetrotters.
When I was eight, Mom and I saw the movie The Miracle Worker. There, up on the big screen, was a family like ours! Helen Keller was blind, made unintelligible sounds, and slung her food around. Her family couldn’t contain her. Just like our family and Mikey. But, thanks to Annie Sullivan, she got better. She began to talk and stopped throwing tantrums. Right in that theater I made a decision that I was going to be our family’s Annie Sullivan. I became hopeful that I could show that Mikey was more than trainable. I would show that she was teachable. I would teach Mikey to communicate. I would set her free. We would be like real sisters, and my parents would be so happy.
Right away I went to work. I taught myself finger spelling and set out, privately so I could surprise my parents, to teach Mikey to say the word “cup.” I predicted that, just like in the movie, once she “got it” a whole torrent of words would follow. I decided that “cup” could be our breakthrough. I was sure that she linked the word with the object. I thought a short word would be easier to say. I sat next to her on the couch, placed a cup in one of her hands and finger spelled “cup” in her other hand while saying the word. I realized later that finger spelling wasn’t necessary for Mikey because she could hear me, but I think she enjoyed it even if it didn’t mean anything to her.
Over many hours and weeks, she was patient with me. She sat quietly, held the cup, listened, and rocked, but sadly, I was unsuccessful. We had no Helen Keller happy ending.
In the diagnostic lingo of the day, Mikey was considered, at best, trainable. She responded with a broad smile to praise when mastering a new task. She was toilet trained and could wipe, somewhat effectively, if handed a piece of toilet paper. She loved, loved, loved to flush the toilet; she was delighted each time she heard the whoosh. She listened for the tank to fill then flushed it again. Enough flushes brought a verbal response from one of us, “OK, Mikey, that’s enough.” She might get up and wander to another room, or she might giggle and flush again. If someone pulled socks over her toes, she could finish pulling them up. “Lift your arm,” meant we were going to put a t-shirt or sweater on her, and she obliged. She knew which room was hers and that mine was off limits.
She understood a lot of words and sentences. If I said “ride” or “let’s go,” she headed for the front door, eager for her favorite adventure, a car ride. “Step up” or “step down,” meant that a curb was imminent, and she responded accordingly.
We think Mikey could say three words. They were garbled, barely understandable, but we were pretty sure. They were words that represented things that made her happy: “Mom,” “tea,” and “go.”
By the time I was nine, I was giving Mikey her nighttime medications. I crushed the Mellaril, an antipsychotic that was used as a tranquilizer, as finely as possible, and then mixed it in warm tea with lots of sugar. It didn’t dissolve completely, and a film of bitter powder always sat on top.
I felt my success at getting Mikey to take her medication had been the result of patience and honesty. She trusted me. She did what I asked. She knew who I was. My ability made me a valuable member of the team and earned me praise and appreciation from my parents, too.
I’d call Mikey and she’d come and sit in her chair. “It’s time for your medicine.” She waited, rocking gently. The room had to be quiet. If she was distracted, she was more likely to jump up and leave. I’d move a kitchen chair in front of her by picking it up, avoiding the noise of dragging it across the floor. Hearing that I sat in front of her, she’d reach out and lightly touch me. “Here you go,” I’d say, as I touched the spoon gently to her lips. On the first try, she’d allow only the minutest amount, enough to tell what it was, but I’d patiently go on. “Come on, Mikey. I know it tastes bad, but you have to take it. I have some strawberries for you when we’re done.” On the next try, she’d let in a little more. It could take ten minutes to get one teaspoon down, but the Dilantin, prescribed to prevent seizures, was easy; it was a thick orange liquid that didn’t taste bad at all.
When we finished, I always gave her what I had promised, strawberries, or I fed her some ice cream on a spoon.
There were also many not-so-sweet times. I learned early to keep my distance when Mikey had a meltdown – to protect myself from bites and scratches. I could paint a vivid picture of the food on the walls and holes where plaster had been kicked out. As a family and as individuals, we adapted logistically, socially, and emotionally. I learned compassion, self-sufficiency, and resilience in my family. But there were also pitfalls – perhaps inherent to my circumstances. They influenced my relationships, my self-esteem and the choices I made.
Five years ago I met, for the first time, others who had grown up in a family like mine. Since then, through social media, I have met many more. We each have our own unique story, but I have discovered that we share similar experiences and have often been affected in similar ways.
Mikey passed away many years ago. I no longer worry about her happiness, safety, and about what might happen to her if she outlives me. But there are thousands of adult siblings who are caring for and advocating for brothers and sisters with severe cognitive, behavioral, and medical challenges. They live complex and demanding lives—juggling the needs of their siblings with work, school and relationships. Many are raising a family of their own. Some are also caring for aging parents. The availability of programs and resources determines where they can live. Treatment, housing, and support resources are often scarce, impermanent and inadequate. Rigorous supervision and vigilance is often necessary to ensure safety and quality of life for their brothers and sisters.
Sometimes they cry and wish someone could lighten the burden. Sometimes they despair. But the strengths they developed as children, resilience and tenacity, bolster them. They keep going, keep loving, keep fighting, and keep celebrating each little victory. In my eyes, they are heroes.
Teresa Sullivan is a registered nurse with a master’s degree in business administration. She has worked as a clinician, educator, and director of treatment programs specializing in addiction and mental health. She lives in Santa Monica, California with her adopted dogs, Danny, Maya, and Kate. Her memoir, Mikey and Me: Life with My Exceptional Sister, debuted on August 29, 2017.