Navigating Life with a Special Needs Child: The Challenges, Rewards, and Support Along the Way

The Pension Boards interviews Patrick Harmon, Director of Infrastructure Services, on the challenges and rewards of raising his special needs son. He reflects on the emotional challenges and the deep sense of purpose he’s discovered through their bond—made stronger by the support of the Pension Boards’ benefits and inclusive workplace culture.

Q: Can you tell us about your stepson Danny? When was your child diagnosed with developmental delays?

A: Danny is 14 years old and has faced several challenges since early childhood. He was found to have developmental delays at age four and was officially diagnosed with autism at age eight. Not only did he have special needs, but he also had medical issues—including epilepsy and ketogenic hypoglycemia—which created a complex combination of challenges. We had this double-edged sword of having a son with medical issues as well as special needs and developmental delay.

To work with these challenges, Danny received early intervention therapies and attended self-contained classes throughout his schooling. Recently, he transitioned into a more integrated classroom as a seventh grader. Because of his epilepsy, we had to get medication that basically slowed his mind down and impacted his development. Managing his epilepsy with medication has been particularly challenging due to this effect on his cognitive growth.

Q: What are some of the biggest challenges you face as a parent of a special needs child?

A: I constantly worry about Danny’s future and his ability to progress. He’s a great kid—he has autism, but he’s verbal and can have conversations, so people often don’t realize he has special needs. When we think about the future, we often wonder, “Who’s going to take care of our children when we’re gone?” That’s an extremely scary thought, especially as a parent of a special needs child. We’re working with the Office for People with Developmental Disabilities (OPWDD) in New York, which secures assisted care and future support like food stamps and job placements. My focus is to earn and save money so we can ensure Danny’s financial security. The Pension Boards really puts me in a position to plan for my retirement, so I can hopefully leave him a considerable amount of money to ensure he’ll be okay and able to navigate his future.

Q: How do you manage the emotional toll of caregiving and constantly thinking about the future?

As a parent of a child with special needs, I’ve learned that you get used to the challenges over time. It’s hard to understand if you haven’t been through it yourself. We’ve faced both medical and developmental issues with Danny, which meant frequent trips to the emergency room and long nights in the hospital. Holding him in my arms while he was so sick was heartbreaking, but it made me develop a thicker skin. Things have improved since he turned ten, but it still requires a lot of patience. We’ve had to deal with many meltdowns and confusion. You learn a lot and find ways to cope, but again, it does take patience.

Q: How has the Pension Boards supported you in balancing your work responsibilities with your child’s needs?

A: During the pre-Covid years, I had to rush off to the hospital a lot. My supervisor knew everything about Danny. I’d tell him I needed to go, and he always responded that it was family first. I wholeheartedly believe that the Pension Boards is a family-first organization. If you have something going on with your family, you need to take care of it. The Pension Boards allowed my schedule to be flexible—I would bring my laptop with me and work from hospital rooms.

Q: How have you navigated the Pension Boards’ benefits for the necessary treatments or therapies for Danny?

A: Overall, I’ve learned a lot about health insurance, prescription drug coverage, and how these systems work, including primary versus secondary insurances and navigating billing. I’ve even helped my team with their questions because of this acquired knowledge. I understand things like max out-of-pocket costs, how FSAs work, and when to use them based on upcoming expenses. Over the years, we’ve probably spent at least $40,000 on these expenses.

Our health services team is phenomenal. They’ve helped me so much over the years. Special thanks to Melissa Kubiak and Jennifer Markowitz (Health Plans Operations) for answering all my questions and assisting me. They’ve even connected me with someone at Blue Cross to help navigate difficult claims. Their support has been invaluable during real, challenging situations.

Q: What has been the most rewarding part of parenting a special needs child?

A: When I met Danny’s mom and we first started getting together, she really was a saving grace. But so is Danny. He’s given me a drive that I think I needed in life. Navigating doctors, hospitals, insurance, providing for our family, and going through all of this together put me in a mindset I never expected but deeply appreciate.

Danny’s personality brings so much fun and joy to our lives. He’s smaller in stature, so he’s always seemed younger than he actually is. His way of thinking and communicating has ultimately extended his childhood, allowing us to enjoy more time with him as a child, which is something we appreciate since kids grow up so quickly. It is bittersweet as he is entering into his teenage years and is now acting as teenagers do. Despite our challenges, I wouldn’t change it for the world—he’s changed my life in so many positive ways, and I’m deeply connected to him.