There are many misconceptions floating around about Down syndrome, people with Down syndrome and their families. In my experience, the idea that having a sibling with Down syndrome is nothing but burdensome or unfair is one of these huge misconceptions. Just as every individual is unique with or without Down syndrome, every family dynamic is unique. My story might not be in line with every sibling to a person with Down syndrome, but I believe many of us having more than a few of these qualities in common.
1. We are understanding.
In 2011, Dr. Brian Skotko found in study conducted at Children’s Hospital Boston, “among siblings ages 12 and older, 97 percent expressed feelings of pride about their brother or sister with Down syndrome and 88 percent were convinced they were better people because of their sibling with Down syndrome.” While my situation is different — I’m 15 years older than my brother and now an adult living away from home — learning to become a good sister to John and good daughter to my parents facing their newborn’s Down syndrome-associated heart defect in the midst of my temperamental teenage years helped me to become a better, more compassionate and accepting person. I hear parents and expectant parents of children with Down syndrome worry that their other children will somehow be scarred by the redirection of their focus to their child with developmental differences. Again, the emotional needs of a 15-year-old are different than those of a younger child; but, personally, I would rather feel valued for being a compassionate and caring person and helper than given undivided attention and exclusive use of my parents’ time and resources. My parents did a good job expressing their appreciation for the help and empathy my sister and I contributed.
2. We Don’t Have It All Together
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 our sibling based on his or her unique needs, we still drive each other up the wall sometimes. My parents like to joke that sometimes you wouldn’t know my sister and brother are 12 years apart; they annoy each other like they’re much closer in age. My sister loves to tap my brother’s iPad games over his shoulder, and he loves to break into her room and jump on her bed. We’re just like any other family, and we have the same kind of relationship with our sibling with Down syndrome that we do with our typical siblings.
3. We Have Strong Families
Maybe this is specific to my family, but from what I’ve observed, it seems common in the Down syndrome community. Part of it could be our desire to ban together to provide the best support for our loved one with Down syndrome as we tackle unique challenges together. My brother has helped our family to form a stronger bond, a sense of community and belief that we’re all in this together. We do everything in our power to support and protect each other, whether it be from outside negativity, inner self doubt or a system that just isn’t doing enough to provide resources that our family needs. I also feel particularly fortunate to have a brother who expresses happiness so freely. When John is happy, which is often, he will tell you, he will jump and laugh and insist, rather stubbornly sometimes, that you laugh along with him. This determined purpose to support one another combined with the continual happiness check-ins from my brother has helped our family develop a culture of joy.
4. We Worry About Our Loved Ones
When John was born, he was diagnosed with Atrioventricular Valve Defect (AVS), a serious heart condition which required surgery, and by the time he was 6 months old, he’d undergone two serious heart surgeries — one to reconstruct his heart to function properly and the second time to install a pacemaker after he went into cardiac block. He’s now doing fantastic and doesn’t even need to use his pacemaker, but these memories stay with us. Life-threatening medical complications can happen to anyone, and when something like this does hit that close to home, it’s nearly impossible not to be changed and have a stronger appreciation for how little control we have over our lives and those around us. I worry especially because certain diseases like leukemia and Alzheimer’s pose a greater than average risk to people with Down syndrome, and I can’t bear to think of my brother so fragile again. I also worry about my parents because of how much my brother needs them. I need them, but if anything were to happen to them, John would be my responsibility. I would gladly take care of him, but I just can’t imagine how difficult it would be for all of us emotionally. How could I possibly explain something like that to him? I also worry about everyone’s mental and emotional health. There’s a lot of stress involved with raising a child with special needs in a society that doesn’t accept them fully. I know we all love this journey in our family, but it can also take its toll on my parents when there are so many questions yet to be answered and so many resources we still have yet to find. Then there’s bullying. I pray from the bottom of my heart that my brother never has to face bullies, but I know that it’s realistically an issue for any kid, especially one seen as different. We have so far to go.
5. We Want You to Know About Us
I never hide my brother’s story or my family’s story. It’s important to me and an integral part of who I am, and I want people to know that about me. I want people to be aware of my brother and the challenges he faces and the abilities he has 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.
6. We Need Community and Crave Inclusion
I love attending events within the special needs community. From Miracle League games to the Buddy Walk, it’s wonderful to be immersed in a community full of people who all seem to understand each other and have an appreciation for the differences that make our loved ones so unique and special. We also want our families to be accepted and appreciated in the community at large. We want to be treated like anybody else. It can be frustrating when people make comments or facial expressions that express pity towards us. My brother is awesome, and we’re probably having a great time when you see us at the park; feel free to say hi. You don’t need to feel sorry for us; if there’s anything to feel sorry for, it’s the other-ing and minimizing of a part of the population we should be proud of. Our differences make us better. We learn from differences. We should be happy and proud to include people with all kinds of differences into our community and society at large.
7. We Can’t Possibly Fathom How So Many People Don’t Get It
“Down Syndrome is the least funded major genetic condition by our National Institutes of Health (NIH) despite being the most frequent chromosomal disorder (1 in ever 691 babies in the US is born with Down syndrome),” according to GlobalDownSyndrome.org. Just months ago Richard Dawkins caused an uproar when he tweeted about his belief that it’s immoral for a woman to knowingly give birth to a baby with Down syndrome. Some doctors are still suggesting expectant mothers terminate pregnancies when the infant is suspected to have Down syndrome, and some are still implying to expectant and new parents of babies with Down syndrome that their child will never be able to interact with them, walk or think for themselves. We just can’t understand how people can be so ignorant. We need to wake up.
8. We’re More Alike Than Different
My brother has Down syndrome, but it doesn’t define him. He’s a smart, mischievous, tech-savvy, funny, sweet, wild yet sensitive 8-year-old boy who loves music, dinosaurs, his iPad, his teacher and his family. He has a strong will and sense of determination. He’s a lot like any other 8-year-old little boy. It’s time to stop looking at people with developmental disabilities as less than. Everyone is unique and our differences should be embraced and celebrated. People with Down syndrome are just like you. They want to be loved, included and valued; they want to live meaningful, happy lives just like everyone else, and they’re absolutely capable of achieving these things
9. We’re Reminded of What’s Important in Life Every Day
My brother has the unique ability to cause the people around him to reevaluate their priorities. We can get so caught up in the rat race of life, and John reminds us that it’s our loved ones who are most important, and we need to slow down and make the time to be with them and laugh with them. I’m serious — sometimes John 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. John knows a lot of things that people don’t always give him credit for, and we’re reminded of what’s important when we take the 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.
10. We Love Our Siblings Just the Way They Are
John 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 John. He is awesome, and I love him no matter what.