My Journey as a Special Needs Sibling

Writer's picture Lisa Butler – Jan 16 – 4 min read

Growing up, I often thought to myself that I had the worst of both worlds. I had an older brother whose needs had to always be considered, but I didn’t have any of the benefits that come along with a sibling relationship. We didn’t play together. I couldn’t talk to him about my day. He would chew on my stuffed animals, but I couldn’t yell at him because he didn’t understand what he did wrong. My brother, Michael, has special needs and this is my experience (so far) as a special needs sibling. 

Michael was diagnosed with Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS) when he was 3 years old. If he were to be diagnosed today, he would probably receive a diagnosis of Autism Spectrum Disorder. Since it was just the two of us, I didn’t know any different until I started seeing my friends engage with their siblings. They could play together, talk to one another, and even argue. I remember one specific moment when I was over at my friend’s house and she was arguing with her older brother. I thought to myself, “I wish I could have a normal fight with my brother…” Even the “bad” parts of having a sibling were something I wished I had. 

Throughout my school career, I would write essays about how having a sibling with special needs made me more patient, considerate, and an overall better person. At the time, it felt like that was what I was supposed to say and it was easier to write about the positives than any of the negatives. It felt wrong to complain. In fact, he was quite easy going when he was younger and he happily sat in the car as my mom drove me to and from all my activities. It became our “normal” for Michael to just tag along or for someone to stay home with him as another family member and I went out. 

Things changed when Michael was in his last year of high school. His teachers used to call him the “gentle giant” because he was so tall and easygoing. One day, Michael started becoming aggressive and throwing things. I want to respect my brother’s privacy and don’t feel comfortable getting into all the details, but it became a very stressful and upsetting time for our family. Michael seemed scared of his own actions and coped by isolating himself, asking to be locked in his room. Waitlists for support were months (or years) long and we had to manage for that period doing whatever we could. Eventually he was seen by a psychiatrist and medication helped him to become more like his old self. During that period, my parents displayed remarkable strength and their commitment to respecting the difference between the sibling and caregiver role was evident. Even during those difficult moments, I was still allowed and encouraged to enjoy my life. Helping at home was an option, not an expectation. 

Looking back on my childhood (and even now), I credit a few key actions my parents took that helped to foster a positive relationship between my brother and I. 

  • Respecting Boundaries: My parents never forced me into a caregiver role. Sure, I was asked to babysit or stay with Michael as I got older, but my parents always asked first. If anything fun with my friends came up (especially in high school), my parents encouraged me to do that instead, even if I had already agreed to stay with him. They didn’t want me to miss out on other things because I was caring for my brother. They allowed me to be a sibling first.
  • Appropriate Communication: Venting is natural, especially for parents facing unique challenges. However, my parents never used me as an emotional outlet. As I got older, we discussed the complexities of our family situation, but it was a gradual process and age-appropriate topics.
  • Individual Bonding Time: I think our relationship really started to develop once I was able to drive and could take Michael out to activities just the two of us. Everyone behaves differently when their parents are around and my brother and I are no different. Having that opportunity for one-on-one time and sharing unique experiences helped us to develop a more traditional sibling relationship. I loved taking him to Toys R Us or Dollarama and seeing him excitedly walking the aisles to find that perfect item that I would undoubtedly buy for him. 
  • Fair Expectations: I was never asked to do anything that Michael wasn’t also asked to do. This approach helped reduce feelings of resentment and fostered a sense of fairness in our family. This mostly related to chores and tasks around the house. For example, my parents didn’t ask my brother to do his laundry, therefore I wasn’t asked to do it either. As I got older, I think my mom regretted this decision a bit! Looking back on it now, I think families can modify chores and follow a rule such as, “In our family, we all do what we can to help.” If one child can’t do laundry, they could still participate in some aspect of the chore, such as bringing their clothes to the washing machine or pressing the buttons. 
  • Access to Resources: There was a time in my early teenage years when I was struggling with my sibling relationship. I didn’t have any friends who also had a sibling with special needs who I could vent to or share my concerns. Recognizing my need for support, my parents found a sibling support group for me to attend. I’m thankful that I was comfortable sharing my concerns with my parents and appreciative that they listened and took action to help me. 

Do I still wish I had a “typical” sibling relationship some days? Sure. But I also now truly believe what I was writing all those years ago. Knowing and caring for my brother has made me a better person and I thank him for that. 

Love you, Michael!