Insight Into Growing up Alongside a Sibling With a Disability
My Brother, Kyle
The relationship shared between siblings is experienced by many. However, when one of those siblings has a developmental disability, it becomes something unique entirely. My older brother, Kyle, the oldest of four siblings, has a rare genetic syndrome known as Nicolaides Baraitser Syndrome (NCBRS). This is an extremely rare syndrome with fewer than 200 people around the world currently diagnosed. Its key characteristics include intellectual disabilities, seizures, and dysmorphic features. Although we always knew that Kyle had some form of a disability, it wasn’t until he was 21 that he actually received a diagnosis. Upon Kyle’s diagnosis and now getting older myself, I have become a lot more invested in Kyle’s care as well as disability advocacy. I’ve had the opportunity to speak to families with children who have NCBRS and doctors from all around the world. Through my experience, it’s dawned on me how little information there is on the sibling relationship when it comes to disabilities. I hope to provide more insight and understanding on this unique relationship.
As surprising as it might sound, I have no recollection of realizing that Kyle had a disability. From a very young age, I was always just told that his brain doesn’t send messages the same way that ours does. Although we understood that his needs always came first, we didn’t exactly know why. To us, he was just our older brother. Some of my earliest memories are being pulled out of school for the day so we could head down to Sick Kids Hospital in Toronto, where Kyle often had appointments with various medical professionals. In fact, those days were often the most exciting as we were always allowed to choose a toy from the hospital’s gift shop to keep us busy while Kyle was in appointments.
Despite the many challenges that Kyle faced, including speech delays, being fed via gastrostomy tube (g-tube), and having a secondary diagnosis of autism spectrum disorder, he was always fully included in everything we did. In fact, not only was he included but he was extremely eager to participate. Something I’ve heard my mother state many times to other parents is that “his siblings were his best therapists.” After being non-verbal for the first five years of his life and attending speech therapy, it wasn’t until my second brother started talking that Kyle began to form singular words, as he wanted to be able to keep up with him. Today, Kyle is completely verbal and extremely sociable. He loves meeting new people and making friends and likely has more of a social life than any of my siblings and I.
It wasn’t until I reached my middle school years that I began to become much more aware of Kyle’s differences. I began to notice the ways in which he was treated differently, as well as how he behaved differently. At this time, I was around the ages of 11-14 and Kyle was 16-20. Like many kids at that life stage, I was most concerned with developing friendships and fitting in. The uncomfortable but realistic truth is that a part of me was sometimes embarrassed by Kyle’s behaviour. This is a feeling that many individuals who have a sibling with disabilities experience, yet is rarely discussed due to guilt or shame. If I had friends over, I often worried how they would act if they had never been exposed to someone with developmental disabilities before. Furthermore, Kyle required help with personal care and I worried what my friends would think if they noticed this. Upon reflection, I often feel a sense of guilt about the shame I felt, however, I think it’s also important to realize that I was a young girl that was preoccupied with wanting to fit in, as most teenagers are.
Another challenge stemmed through the fact that Kyle did not receive a diagnosis until he was 21. Due to this fact, little was known about Kyle’s syndrome and prognosis. It raised questions about his life expectancy and his future. I can vividly recall discussions with my mother about the likelihood of me ever having a child with the same syndrome, or what would happen to him when my parents were no longer able to care for him. I was given reassurance that there was no medical reason that would shorten his life expectancy, but this was only actually confirmed once we received the diagnosis. In many special needs siblings relationships, these are common questions and worries. Oftentimes, the siblings are also afraid to even approach their parents with these questions, out of fear of upsetting them. Siblings can also feel resentment, particularly if they want attention yet know the sibling with a disability’s needs are the priority.
The Sibling Relationship
It is critical that the special needs sibling relationship is nurtured, as aside from the parents, the siblings are the ones who spend the most time with them and will potentially be responsible for making life decisions in their place one day. Even though these relationships are completely unique and integral, there is little research done on the impact of being raised in a household with someone who has disabilities. Understanding how we can best support these siblings is critical, so that they can foster a strong relationship as they get older. Furthermore, the siblings will one day be their biggest advocate, so it’s crucial that they develop an understanding of their sibling’s needs.
Today, I am much more understanding and patient with Kyle, and I often find myself thinking about my role in his future. I have also found my own voice and have zero hesitation in advocating for him. Whereas before Kyle was seen as more of my parents’ responsibility, the dynamic has shifted, and my other siblings and I now see his needs as our responsibility too. Having a sibling with a disability has given me a much higher capacity for empathy, and has taught me how to not only advocate for my sibling but as well as for myself. It has also provided myself and my family with an incredible sense of resilience due to the many challenges my brother has, and is continuing to overcome.
Oftentimes when I tell people about my brother’s syndrome, I’m met with apologies and looks of pity. People tend to offer condolences, or aren’t always sure how to react, as though it’s some kind of forbidden topic. I want people to understand that having a sibling with a disability is far from being a burden. It would be misleading to say there hasn’t been any challenges or rough days, but doesn’t every family go through difficult times? Siblings of children with disabilities often grow up with a profound sense of maturity and tolerance for those who have differences, as they understand that differences should be celebrated. They also develop high levels of patience and emotional intelligence, with a strong insight into the human condition. Despite the challenge it may appear as, this unique experience is ultimately extremely fulfilling and rewarding, and I am confident in saying that I would not be who I am today without growing up alongside a sibling with a disability.
Kyle is such a blessing in all of our lives and it’s safe to say our world would be very different without him. He has been the reason behind many laughs, as he always seems to know what to say at exactly the right time. He is always seen with a smile on his face, even through so much adversity. Kyle lives an extremely active life and is very involved with community groups and day programs. Although he will always need support, he has come so far and it’s obvious that there is so much positivity in his future. I am so grateful for all that he has taught me about what it means to truly live life to the fullest.
Image: A childhood photo of Kyle and Emma Jedan.
~ Post written by Emma Jedan