A Lifelong Journey: Supporting a Sibling with High Support Needs

I was two years old the first time I held my baby brother, Zach. I wasn’t very impressed. As I was holding him, I looked up at my dad and I asked if I could have a new horse instead. I never got the horse but in hindsight, a horse might’ve been less stubborn than my brother. By the time Zach turned two, he wasn’t talking, even though we were all working hard to help him. At three, he couldn’t be pulled away from the one spot in our living room where he watched the ceiling fan spin for hours. At four, he began running into traffic, laughing as he darted away from our frantic attempts to keep him safe. Just before he turned five, he was diagnosed with autism.

Getting that diagnosis wasn’t easy. For years, providers dismissed our concerns, brushing them off as “Zach Syndrome” or insisting we just needed to “wait and see.” Those delays cost us crucial time during a window when early intervention might have helped. He was eventually diagnosed in the early 1990s, in rural Missouri where services were scarce then and, unfortunately, often still are. Today, Zach would be described as an autistic person with high support needs.

As his older brother, I remember feeling a kind of jealousy toward classmates who had what I thought of as “normal” sibling relationships. I wanted the kind of fights that involved conflict through words, arguing over toys or trading childish insults. Zach communicated differently. He sometimes bit me, or himself. He didn’t play with other kids, and he certainly didn’t join in on games. While the other siblings talked about playing together at home, Zach ignored me in favor of climbing the cattle paneling on our farm, alone, for hours.

Sibling relationships with profoundly autistic brothers or sisters are complicated. For many of us, the bond doesn’t come naturally or easily. In my case, Zach and I didn’t find ours until we were well into our 30s. The connection came unexpectedly one day through music.

Zach has a rhythmic, repetitive movement he uses often: rocking. One day while we were riding in my car for an hour, I noticed something new. He was rocking perfectly in time with the beat of each song on the radio. His movements sped up and slowed down in sync with the music, and when he looked at me and smiled, I realized he wasn’t just listening to the music, he was feeling it. I nearly drove off the road, caught off guard by the magnitude of that moment. I started talking to him, asking questions like, “Do you like this one?” or “Have you heard this before?” And even though he didn’t respond with words, it felt like for once we were sharing something.

I often say I’ve accepted that Zach will never speak, and most days, that’s true. It’s a truth I’ve had to come to terms with so that I could focus on building my own identity, one that wasn’t solely shaped by being a sibling and caretaker. Still, there’s a small part of me that holds on to the hope he might find a way to share his voice one day. That tug-of-war between learning to let go of what never was and embracing what has been a central part of my journey and often is for other siblings as well.

Over the years, I asked the same questions many siblings do: “Why us? Why him? Why me?” I spent a long time wishing for different outcomes, sometimes just wishing he could even just echo back my words to me. For many siblings of those with profound developmental disabilities, these questions feel endless. And unfortunately, there are no simple or satisfying answers.

What I’ve come to learn is that healing often begins with shifting focus. It doesn’t mean ignoring the pain or pretending things are easy, but it does mean finding joy where you can. For Zach, joy is found in life’s simplest moments. He laughs uncontrollably at the same Disney movies he’s watched for decades, savors his favorite foods like he may never enjoy them again, and rides in the car with no destination in mind. His version of exercise is bouncing and rocking, often to the rhythm of music only he hears. When we meet our siblings where they are, rather than where we expect them to be, moments of connection become possible even if they take years to find.

If you’re a sibling who feels angry or overwhelmed, you’re not alone. Those emotions are valid. But try not to live in them for too long if you can help it. You may not be able to change your sibling’s differences, but you can change how you view them. You may even find, someday, that the bond you hoped for shows up in an unexpected form.

And one last piece of advice: don’t forget to be you. Nurture your own interests, find your own people, and give yourself permission to have your own identity outside of your sibling role. The more whole you are, the more present and connected you’ll be when your sibling needs you.

 

Authored by:

Nathan Wood, Speech Language Pathologist