This is What It’s Like to Raise a Teenager with Disabilities

Nine years ago, I wrote about what it was like raising my son who lives with profound disabilities. At that time, he was an adorable 6 year old little boy with sparkling blue eyes, kissable cheeks, and a teeny tiny red wheelchair. Today, he still has all those things, except his wheelchair is bigger, and blue, and he’s now a handsome teenager. Many aspects of raising him have remained the same, but the last decade has brought many new challenges as well as perspective.

This is what it’s like raising a teenager with disabilities.

In 2017, I wrote, This is my struggle of raising a child with disabilities. It’s a constant tension of loving him with my whole entire being, but also grieving for what isn’t, and what will never be.

In 2026, there’s still grief for what will never be, but it looks different. And usually there’s more curiosity than grief. I wonder, if G was a typical high school freshman, what would he be like? Would he be an athlete like his sister or be into music and gaming like his brother? Would he have a girlfriend? Would he be quiet or a class clown?

In reality, his world is still really small. But that small world is full of people who love and adore him, and the things that he still finds pleasure in: music, being outdoors, and going to school.

In 2017 I wrote, It’s explaining G’s disabilities to his little brother and sister, who are too young to fully understand. It’s working through their sometimes negative behaviors that manifest as a result of that misunderstanding. It’s feeling ill-equipped and unprepared to navigate their unique sibling relationship, but muddling through just the same and praying that G will teach them empathy and compassion as they go through life.

In 2026, G’s siblings are now thirteen and ten, and old enough to understand how and why our family looks and operates differently than most. They’ve grown up with nurses in their house, their brother being in the hospital and therefore their mom not being home, and a family that logistically cannot be spontaneous and yet can also be totally unpredictable at times. At times, there are still misunderstandings, anger, and jealousy, but they both fiercely love their brother.

As for me, raising siblings with the added layer of disability has been the most challenging endeavor of my life. There are so many complex and unpredictable aspects of this experience, and I am constantly fighting to maintain my own mental health so I can also care for theirs.

The main difference between having a 6 year old versus a 15 year old with profound disabilities is perception of time and the future. When G was 6, I couldn’t imagine him being anything but a child forever. In my mind, we had ages and ages before we had to start thinking about terms like guardianship or adult-care, or planning for what we will do when he can no longer go to school. And the biggest looming question is, What will happen to him if we can no longer care for him? 

There are many hard days that sometimes stretch into hard weeks and months. And there are many hard, unanswered questions. But what I wrote in 2017 remains true in 2026:

G’s very existence makes my life full and rich. He is disabled…but he is perfect. He made me a mom, and being his mom is the greatest gift of my life.