Living with Judgment: Trusting Your Instincts in Special Needs Parenting

When Sydney was about five years old, we began working with behaviorists. At the time, I had no idea what to expect or how they could truly help. In those early years, we had several behaviorists, each arriving like a blip on a radar—scanning the situation, assessing the environment, interacting briefly with Sydney, and then offering recommendations. Something about it all made me skeptical.

One behaviorist focused solely on Sydney’s hand-biting, determined to take data and create a behavior plan. While well-meaning, she was fresh out of school with no experience in Smith-Magenis Syndrome. As I juggled relentless tantrums, self-injurious behaviors, debilitating anxiety, and Sydney’s inability to play independently, hand-biting felt like the least of my concerns. Her proposed plan, while methodical, risked triggering Sydney’s more severe behaviors. I knew then that this behaviorist wasn’t a fit for our family.

Another behaviorist had strong opinions about how my husband and I managed our family dynamic. Early on, when our boys were as young as nine and ten, we adopted a “divide and conquer” approach to survive the chaos. My husband took on the boys’ sports schedules, while I stayed with Sydney, doing everything I could to avoid meltdowns.

At the time, we were both processing Sydney’s diagnosis in our own ways. In the weeks following the diagnosis, I was in shock, unable to do much for anyone. My husband stepped in for the boys until I could begin functioning again. Over the years, we naturally fell into roles that suited our strengths—he focused on the boys while I took on the complexities of Smith-Magenis Syndrome. This behaviorist questioned our marriage, our parenting decisions, and how we balanced our boys’ needs. Her lack of understanding was destabilizing, so I phased her out as well.

Finally, after much trial and error, we found a behaviorist who felt like the right fit. He was open-minded, an excellent listener, and, most importantly, non-judgmental. I’ll never forget when I shared how Sydney’s tantrums sometimes required hours of driving to calm her down. He didn’t question my approach but instead hid in the back of the car to observe and gather data. From that day on, I knew he was a keeper. Thirteen years later, he remains a trusted part of our lives.

The Hidden Complexity of Special Needs Parenting

In the early days of Sydney’s diagnosis, my husband and I had no way of knowing how best to balance all the parts of a special needs life. It has taken us years to perfect it. When friends, family, and professionals have given advice, made suggestions, or passed silent judgment, they’ve done so based on a snapshot of what they see. What they miss is all the behind-the-scenes work that went into the decisions we’ve made over the years.

While I can appreciate others wanting to help, it can also be frustrating because there is so much they can’t see. The nuance of it all, the constant recalibrations, and the unspoken rhythm between my husband and me to ensure everyone’s needs are being met often go unnoticed.

This dynamic was especially tested when it came to vacations. For years, we tried renting houses that felt like home but never felt like a vacation. Other times, we meticulously planned trips to disability-friendly destinations. While these trips provided moments of joy, the effort required to ensure Sydney’s comfort was so exhausting that we often needed weeks to recover after returning home.

Eventually, we made the heartbreaking decision to take turns traveling with our boys. One year, my husband took them on an outdoor adventure; another year, I took them on an international trip. While these trips gave my boys incredible experiences, they were bittersweet for both of us. Whether I was the one traveling or staying behind, the grief of missing those moments together as a family was overwhelming.

Friends often made comments like, “You need to keep taking Sydney on trips to get her used to it,” or, “There’s no reason you can’t all travel together; plenty of special needs families do it.” These statements revealed how little they understood the complexity of our situation. Over time, I learned to keep my grief and pain to myself. There are moments in this journey that are too heavy to share with those who haven’t lived it.

Facing Future Decisions

As Sydney approaches adulthood, I am bracing for the tough decisions that lie ahead. These choices will undoubtedly attract judgment, opinions, and questions. Over the years, I’ve learned to tune out much of the noise and trust my instincts. But I won’t pretend it’s easy. Seeing others in similar situations make profoundly different choices can sometimes lead me to question myself.

In the coming months, I can only hope to remain focused and solid in my decisions, tuning out the judgmental and questioning voices that are bound to arise. This journey has taught me that there’s no one-size-fits-all solution. Every choice we’ve made has been shaped by years of trial, error, and love.

For families like ours, there are no easy answers—only the quiet confidence that comes from knowing we’ve done our best. And that has to be enough.