Life with a Special Sibling

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Most people know at least one person who is special needs or who has a sibling that is special needs. Having a special needs or handicapped sibling can make one’s life significantly different than that of the typical sibling life because that handicapped sibling has special needs that need to be met. There are typically two types of siblings who have handicapped siblings; those who use their handicapped brother or sister as an excuse for everything, and those who treasure their handicapped sibling and use the experience they have from them to their advantage. I like to think that I fall into this second sibling type. I feel like the story of type 2 siblings is one that is not heard as often as type 1 as is an important one to share. My name is Kellsey and I have a younger special needs sister named Shannon who has been a light in my life since the day she was born. My sister was born with Wolf-Hirschhorn Syndrome which is a genetic disorder in which a portion of her 4th chromosome has been deleted. The amount deleted is what determines the severity of the symptoms experienced in kids with her syndrome. My sister is on the more severe handicap side as she is unable to eat orally, walk on her own, or talk at all. Her handicap has obviously added challenges to my life growing up, but I don’t blame her for them. In fact, I’m thankful for them.

    Having a special needs sibling has taught me about patience, sensitivity, responsibility and most of all, love. First thing to know about having a special needs sibling is that they will almost always dominate your parents’ and other’s attention. Therefore, I had to learn very early in life, how to be patient and wait for things and attention because Shannon’s needs will always come before mine. My sister has also taught me about being sensitive. I don’t necessarily mean emotionally sensitive, I mean sensitive to subtle changes and awareness of things going on around you. The first six or so years of Shannon’s life were spent in and out of the hospitals due to multiple seizures. I had to learn very early on how to detect the initial symptoms of a seizure and how to monitor my sister’s health when alone with her as a result. This acquired skill has taught me to be sensitive to changes in people around me and identify signs of a problem or conflict long before others do. Being responsible is also a big part of having a special needs sibling. Along with watching my sister for signs of medical problems, I had to learn how to set up her medicine each day, fill and run her feeding pump, use all of her equipment, like her walker and stander, and yes, even how to dress her and change her diaper. As I’ve grown up, my level of responsibility has grown and I’m able to take on more jobs, handle stress and am more reliable than others, which is mainly because of all the responsibilities I’ve had taking care of my sister. Lastly, Shannon has taught me about love. It can be extremely hard to love and look out for someone who is different from you. Having my sister has taught me to look past appearances and disabilities and see people as they truly are. Every one of us is a human and deserves to be loved no matter whether they’re missing an arm, can’t talk or can’t remember your name. Learning to love my sister has especially taught me to love other special needs kids, their families and elderly people.

    Now I’m not going to say that having a special needs sister is all good with many benefits, it’s not! Since my sister’s needs require constant attention, I’ve had to learn to rely more on others for attention, emotional support, and love. That’s not to say that my parents do not love me or support me, they just have to address my sister’s needs first meaning that I’ve had to find other friends to listen and give me the attention that I crave. Another downside of having a handicapped sibling is all of the stares, laughs, and mocking you get whenever you are with your sibling in public. The constant staring and whispering can be very uncomfortable at times and often makes me feel guilty for taking her out at all. This, in turn, has led me to develop a more isolated and introverted lifestyle to avoid that constant judgement from others. Lastly, and most shockingly, having a handicapped sister promotes jealousy. There are numerous days, even now, that I wish I had a “normal” little sister, one that I could teach things to, play with and even argue with and that’s not a bad thing. It’s human nature to want social interaction and it’s harder for individuals like us to get that interaction. The idea of having a normal sister is a major reason why I chose to join a women’s fraternity in college. Having a group of around 20 sisters who I can rely on and who love me for who I am has made my college experience fifty times better.

    As you can see, my life has not been easy with my special sister. It’s had both positive and negatives, but it’s made me who I am and I wouldn’t change it. I’ve learned how to deal with many kinds of struggles and have become a stronger person because of it. I believe that God chooses certain people to have special needs siblings because he wants to make them stronger and more compassionate than the rest and I’m thankful that God chose me to be one of them. My life was made special because of my sister and I believe it will help pave the way to my future career and life. My hope is that by sharing my story, you will see that people who have special needs siblings do not have easy lives and that if you know one of us, love us and encourage us. We want to know that we’re not alone and that we’re loved and appreciated, too.