Did you know that October is Down syndrome awareness month? If I am being honest, shaping an article around Down syndrome and the awareness needed for this prevalent chromosomal disorder was difficult. What could I say that the TCL television show “Born This Way” or the new movie “The Peanut Falcon” hasn’t tried to highlight? How can I give readers more insight that we as a community should value and offer opportunities to those with disabilities, that our own Owensboro native, Jeff Rhinerson, hasn’t done?
Owensboro is blessed to have Green River Area Down Syndrome Association (GRADSA), whose mission is to enable families enriched with the Down syndrome connection to share resources, build friendships, and advocate together for the future of individuals with Down syndrome. They do a great job of connecting with parents from day one, so what else can I share to bring more awareness to those not impacted by Down syndrome?
This year I came to know a 16-year-old girl who called Puzzle Pieces for advice after she found out her unborn child had Down syndrome. (Yes, it is a myth that only older women can have children with Down syndrome.) She was searching for hope and seeking comfort that her anger and fear were normal and justified. She needed to be told that her son will love her unconditionally and will change her life for the better.
This phone call should inspire you. It is up to each of us to include and build genuine relationships with all, and understand how to connect to those with Down syndrome or any disability. This will allow parents who are raising children with disabilities to have hope that their community will embrace their son/daughter for a future that fulfills their wildest dreams and more.
I can tell you that more than 400,000 individuals in the United States have Down syndrome, meaning nearly a quarter of all U.S. families are affected by the genetic condition. I can give you statistics and perspective as a service provider, but the truest portrait can be painted by mother’s raising a child with Down syndrome. In their own words, here are two mom’s stories on life impacted by Down syndrome.
One mom writes of her daughter, Sydney, and how life with her daughter can be difficult, but has taught her so much.
“Sydney has a routine that she thrives on and when you get her off schedule she can get completely overwhelmed and overstimulated. And this can make it hard on everyone. When someone with Down syndrome becomes overstimulated it can show in their behavior. Sometimes Sydney will have a meltdown in the middle of a restaurant. And other times she does great and has absolutely no problems at all. The thing is, we never know what’s going to happen. Whether it’s a friend’s birthday party, a celebration at her school, or just getting together with family, we never know how she will handle it. And that’s OK. We are there to help her through every step of life, including the hard times. She teaches us something new every day. She has taught me to let go of things, not to worry, and how to have some patience.”
That same mom honestly answers if she would change the fact that her daughter was born with Down syndrome.
“Absolutely not! She was made perfect by the perfect Creator and who am I to second guess Him? Now I’ll be completely honest. Are there certain things I would change? Yes. But, I would never want to change the fact that Sydney has Down syndrome. It’s part of what makes Sydney, well, Sydney. Would I change the fact that she has to struggle throughout her day with certain things? Yes. Would I change the fact that people see her for Down syndrome and not for Sydney? Yes. Would I change the fact that she will forever be trying to prove herself to most everyone because she has a “disability?” Absolutely! Because let me tell you something, she can do most anything she sets her mind to. You only have to give her the chance.”
Another mom understands that her son, Preston, who has Down syndrome, can be difficult for other children to comprehend.
“I want you to talk to your kid about my kid. You don’t have to feel like there’s something wrong with acknowledging that my son has Down syndrome. Kids are naturally vocal and curious and they have questions about people with disabilities, and you aren’t doing anyone any favors by not answering them.
Encourage your child to interact with Preston and even befriend him. Believe it or not, your child can benefit just as much as mine. Kids that have kids with disabilities in their life have more compassion, patience, love, respect and joy in their life and grow up to be adults with more compassion, patience, love, respect and joy in their life!”
That same mom shares basic ideas to share with children about disabilities.
“No two people are the same — some differences are just more noticeable.
A disability is only one characteristic of a person. People have many facets: likes and dislikes, strengths and challenges.
Children with disabilities are like all children in that they want friends, respect and to be included.
Children with disabilities can do many of the things your child does, but it might take them longer. They may need assistance or adaptive equipment to help them.”
I hope that you can hear the hearts of these two moms advocating for their children. We fail as a community when we group those with Down syndrome together, assuming their similar physical characteristics and diagnosis means they are the same. We thrive as a community when we recognize the person not by their disability and grow our compassion and willingness to affect change by offering opportunities for those that are different than ourselves.