Growing Up with a Brother with Special Needs

When I was young, I don’t think I fully grasped the concept that there was something “wrong” or “different” with my brother. Joe and I are exactly 1 year and 4 months apart, so I have no real recollection of the many surgeries he had to endure or the fact that he had to be fed through a feeding tube as a baby. As the older sister of a brother with special needs, I just took Joe for how he was instead of acknowledging his differences compared to other kids.

Joe was born with a birth defect that affected the blood flow from the left ventricle of his heart, which lead to him having multiple open-heart surgeries in his infant and early childhood years. As a result, he did not have enough oxygen going to his brain, and he was put on a heart and lung machine three times before he was even 6 months old. Due to this, Joe has developmental delays.

Growing up with a sibling with special needs comes with a unique set of challenges and blessings. When we were little, we did a lot of the same things together, including playing on the playground, watching the same television shows, and playing with our toys. As time when on, I started to move on to more complex games and TV shows while Joe didn’t. I began to realize the limitations Joe had made him different from other kids his age. 

Joe required a lot of special attention from my parents to deal with his many issues, whether it was bringing him to frequent doctors’ visits for his heart or seeing a speech or physical therapist. I was often dragged along to these appointments and spent a lot of my time in doctors’ waiting rooms with the most boring games imagined. But that is how things were, so although I am sure I often complained, I began to accept it as a part of my life.

At a very early age I needed to learn about the virtue of patience that comes with having a brother with special needs. Joe would often have outbursts when learning new things he felt were too difficult to learn. My parents and I would have to reiterate multiple times the simple instructions of buttoning up a shirt or removing the cap off a water bottle. It took Joe a lot longer to learn these simple tasks that come naturally to most. 

As we both got older, the way the world perceived Joe started to become more important to me. I think it is natural for older siblings to protect their younger siblings; however with Joe’s issues, I always seemed to take it more personally. I hated the way people would talk or ask about my brother when it was done with a sense of pity or discomfort. I don’t see Joe’s disability as a burden or a tragic event that happened to my family. Joe’s disability is part of him, and I don’t define him based on it.