“Is there something different going on with my child?” — A Personal Story

This is a challenging question for any parent. Kathryn shares her reflections on the “intensity” of parenting a child with neurodiversity and the value of early intervention.

(3 min read)

As a first-time parent, I had a difficult time gauging what was typical, as everything was new and the learning curve so steep. However, early on, I felt our experience did not quite match that of other parents. I recall a mom-and-baby/toddler gathering where everyone agreed on how much easier it was getting while I was feeling the opposite. I would read the latest parenting and child development books and articles. Their advice didn't quite speak to our situation, and their recommendations — no matter how diligently and consistently followed — seemed ineffective. An unresolved and lingering concern surfaced: "Is there something different going on with my child?"

I couldn't quite put my finger on it, but there was a difference. If I had to express it in a word, it would have been "intensity" — the intensity of parenting and how my child interacted with the world around him. It was through good fortune and effort, that after the first few months of starting preschool, we would connect the dots, find the right specialists, and come to a better understanding of our son and how to support him. Once we better understood our son's developmental differences, we met him with greater empathy, effectively redesigned our parenting toolkit, and strategically built upon his strengths. We could set him up for success; he coped much better and thrived.

Entering the world of early intervention was overwhelming at first. There were so many acronyms, developmental terms, and specialists involved. Educators and medical practitioners we assumed were trained to detect and understand these differences weren’t equipped with the knowledge or skills to do so. We needed help finding a community to connect with and a strategy to help guide the choices and decisions before us. Emotionally it was sensitive and challenging. It was also expensive and not an anticipated part of our budget.

We quickly realized we needed to up our game — coordinate, integrate, and prioritize care. We needed to advocate for our son within the network of specialists, educators, friends, and family members. As we learned to navigate, I felt the need to make our journey meaningful for our family and other families on a similar journey, to help them feel less confused, isolated, and alone in the process, if not a little bit hopeful, too.

Several years onward, our son has gone from strength to strength with his confidence and self-esteem intact. We still have challenges and periods of intensity that are unique to him and our family circumstances, but we have the confidence to address them productively and head-on. We hope to empower our son with these qualities and skills as he matures and will naturally need to take on this advocacy role for himself. This experience with our first son helped us identify similar but differently presented issues in our second son even earlier on in his development. As both mature, we peel back layers.

Our children are older now, so I have had the opportunity to reflect with other parents and specialists and think about what we wish we had known at the start. I marvel at how different our life would be without early intervention. Truthfully, it would have been a great disservice to our son had we not pursued it. I am grateful we were lucky to identify his needs and get support for him early on, yet it shouldn't have been up to luck. I hope systems will change to allow early warning signs to be more recognizable within the broader populace and early intervention to be systematic and accessible.

As a step in this direction, I founded Prism Advocacy to help parents find the confidence to take on the unique challenges within their family and help their children with neurodiversity thrive. I assist parents in their journey to navigate these complexities, build their advocacy skills, and find practical ways to support their child’s growth and development.

Parents are integral to early intervention and advocacy. If any part of this resonates with your experiences, I hope you will ask questions, seek answers, and find support. Reach out if I can help.