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A Sibling’s Perspective

I was 10 years old when my brother was born in the summer of 2003. This was an extremely exciting time for me as I was the youngest of my three other siblings and couldn’t wait to finally have a little sibling of my own to pick on. Admittedly, I was also a little jealous since I wasn’t going to be the baby of the family anymore (a position I held very well). My excitement was quickly replaced with confusion and worry after my brother received his formal diagnosis of Prader-Willi syndrome. The diagnosis was hard to comprehend as a 10-year-old. I completely unfamiliar with PWS and had very little experience with any developmental disabilities. I remember thinking “What happens now? What does this mean for me, my brother, my family?” There were so many questions but so few answers. But, from the beginning I have loved my brother unconditionally as have all my siblings. We take on any challenges he faces together, as a family.

 

Facing my brothers challenges together did get difficult as we all got older. Being so much older, I was away at college for the years that proved to be the hardest for him. The years when other kids at school are no longer inclusive and understanding, the years when he received many more diagnosis on top of PWS (Tourette syndrome, scoliosis, and many hospital trips for an unknown outbreak of hives across his body), the years when he began to understand he is slightly “different” than his peers. It was hard not being there for him or to protect him from unkind classmates. However, through everything he has remained a kind-hearted and caring boy towards anyone he may encounter. He never lets hardship dampen his spirit or change who he is.

 

Despite everything, it is not difficult to think about my brother’s as anything but good. He has proven his resilience, his strength, and his ability to never let anything get him down. He is no different than anyone else and he can do anything that he puts his mind to. I see a future for him filled with meaningful relationships, an occupation in music (which he truly enjoys), living autonomously and independently. Even if there are unforeseen challenges in his future, he will never be alone. He will always have me, our other siblings, and our parents in his corner, defending him and rooting for him.

 

I would like to thank my brother for teaching me more than I could have ever imagined. He has taught me patience, compassion, and an understanding for others that I had not previously possessed. He showed me how to carry myself with grace and hold my head high even during the darkest of days. My brother exudes kindness and love unconditionally everyone he meets. He accepts everyone for who they are and inspires me to do the same. Most importantly, I have my brother to thank for leading me towards my career path. I am currently working towards my Master’s in Applied Behavior Analysis and will work with individuals with Autism Spectrum Disorder (a service he received when he was younger). Without his influence, I would not have found my passion nor the understanding I have towards my clients. For that, I say “THANK YOU!”

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About the Author : PWSA (USA)


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