Many people of my age or adults too don’t know what Down syndrome is and that make them scared with such people. Being a sister of a brother with Down syndrome, I often felt isolated and confused. I worry deeply about my brother’s health and well-being. Sometimes it even feels compelled trying to be perfect in order to compensate. Many times, he got the biggest share of attention which made me left out and jealous when I was immature about things. But, of course, growing up with special needs presents challenges, it also comes with opportunities. It infused me with a greater sense of responsibility, patience and compassion for others and helpful, empathy for others and insight into coping with challenges, acceptance of differences, kind and supportive. He inspired me to do something for him and also other people with disability; therefore I have started my journey in this line since March of 2016.
I also realize that it’s far too simplistic to say that having a sibling with a disability is either a plus or a minus. More important is the fact that disability may amplify the inequities that are an inevitable part of all sibling relationships. Well, we fight and end weeping at times, we play happily, we go for a walk, etc. Sometimes, he hits me with objects he sees around and realizes his mistake later. At other times, he is patient and gentle; he does silly things just to make us laugh. He is the funniest, most interesting and most important person in the world.
My brother has the unique ability to cause the people around him to reevaluate their priorities. We sometimes get so caught up in the rat race of life and Ashirwaad reminds us that it’s our loved ones who are most important and we need to slow down and make the timer to be with them and laugh with them. I am serious – sometimes he is unrelenting about insisting you laugh with him. He knows laughter can turn your day around and make you happier even if it’s not genuine at first. Ashirwaad knows a lot of things that people don’t always give him credit for and we are reminded of what’s important when we take time to learn from him. People, our relationships, love – these are the important things in life. Everybody just wants a purpose in life, to mean something.
Just as every individual is unique with or without Down syndrome, every family dynamic is unique. Mt story might not be in line with every sibling to a person with Down syndrome, but I believe many of us have few qualities in common. Just because we tend to feel more accepting and have a lot of practice in patience doesn’t mean our family is any less crazy than yours. Additionally, though we may have learned different communication techniques to interact with sibling based on his or her unique needs, we still drive each other up the wall sometimes.
Ashirwaad is an incredible, unique, joyful little boy. I love him exactly the way God made him. I want him to grow and learn and have every opportunity in life, but I don’t wish he was anyone other than him himself. He is awesome, and I love him no matter what. I feel I have become a BETTER person because of my brother. I have learned from my brother about love and forgiving. He taught me how to love and forgive people. He has shown me how to push myself to achieve a goal not matter how hard or impossible.
I want people to be aware the challenges intellectual and developmental disabilities face and the abilities they have so our society will change its attitude towards people with Down syndrome or other intellectual and developmental disabilities. I want people with typical children to make an effort to teach their kids about children and adults with special needs. We want awareness so we can break down the irrational and unfounded fear of the unknown associated with disabilities. We want to be treated like anybody else.
Aarzoo Parajuli
