The word “awareness” has always eluded me. October is Down Syndrome Awareness Month, but if I had to make a bet, you are already aware that Down syndrome exists and that people with Down syndrome are living and thriving in our communities. I’m not going to justify the life of a person with Down syndrome, explaining chromosomes and how they give back to the community, and I promise to never ask you to explain or defend your child’s existence either. All I’m going to ask is for you to consider the possibility that raising a child with a disability is mostly about simply raising a child.
If you’ve been lucky, you’ve had the opportunity to snuggle a baby, elicit giggles from a child, pick the brain of a teenager, or befriend an adult with Down syndrome. In the 21st century, we have opportunities for more diverse relationships than our parents and grandparents had, and we must not waste this gift. Children as recent as the 80s and 90s, all the way up to today in some cases, were often deprived a place in our public school classrooms and afterschool activities. Children as recent as the 70s and earlier were more often than not institutionalized, separated from their families for a myriad of reasons, including stigma and shame, in conjunction with a lack of appropriate funding and support that many of us today take for granted.
There is no crystal ball to tell what the future will hold, so if anyone ever tries to predict who your child will be or what kind of life they will have, run as fast as you can in the other direction and never look back. All you need to see is the beauty in your child’s eyes, whether they’re looking back at you or not.
See, nurturing a person you love is actually the easiest thing in the world to do. For example, you may not have known much about religion before falling in love with the man or woman you would end up marrying, and now here you are hosting family holiday dinners with your in-laws. You may not have been an athletic kid, yet here you are preparing to send your high school varsity player off to college. And the only thing you thought you knew about disability before you became blissfully pregnant was that it would be hard, but what nobody told you was how easy it would be once you locked eyes with the sweet baby you created.
I believe this generation of babies with Down syndrome born today are the luckiest—luckiest to have parents who are educated in how to support them, luckiest to have friends who will accept them, luckiest to reap the benefits of decades of research that produced the best health guidelines, the most equitable health care (albeit a work in progress), and the greatest opportunities in education and independent living. We still have a ways to go, but we’re moving in the right direction.
We are also the luckiest generation of parents, understanding how important it is to never return to the dark, recent history of institutionalization and infanticide once hoisted upon families with children with disabilities. We are free to celebrate our children’s lives and their beauty with the world.
And we are so very lucky to have you. Happy Down Syndrome Awareness Month!
What can you do with your family to support this amazing community?
Preschoolers and elementary students:
Invite a classmate with a disability over for a playdate or to a birthday party. The best chance we have at acceptance is to raise this upcoming generation together.
Read books that encourage your child to be kind and confident. These qualities will spill over into the community, I promise!
Reintroduce that amazing baby sign language you used when your children were little! Many of us are still using it to bridge communication barriers and delays. Some schools are even offering American Sign Language (ASL) as classroom and club opportunities.
Middle and high schoolers:
Encourage your children to deny extra credit or community service hours in exchange for time spent with peers in special education—but still encourage the friendships and sportsmanship! Have you ever heard of special education students receiving community service hours for teaching patience and love to general education students? This practice perpetuates discrimination between kids with disabilities and kids without.
Create a fundraiser that supports disability research. We love the National Down Syndrome Society, but childhood cancer, congenital heart defects, and Alzheimer’s disease all disproportionately affect people with Down syndrome.
Young adults and parents:
Vote for healthcare and equitable education policies—closing our children off in self-contained classrooms is not always the best option for our children or for yours. We need options.
Carve out some time to watch programs that tackle the very relevant topic of institutionalization:
A tough and valuable documentary titled “Unforgotten: Twenty-Five Years After Willowbrook” is available for free on YouTube. Set in Staten Island, Willowbrook State School was among one of the most catastrophic institutions for disabled children. Much of the language surrounding disability is outdated from the 1990s, but the history cannot, as the title suggests, ever be forgotten.
“The Peanut Butter Falcon” is a fun-loving story of a young man with Down syndrome whom the state will only support in an elderly nursing home, with an all-star cast that includes Zach Gottsagen, Shia LaBeouf, and Dakota Johnson.
Available on Netflix, “Crip Camp: A Disability Revolution” illuminates the gross discrimination against people with disabilities that led to the uprising of the Disability Rights Movement and the longest sit-in of a federal building, as more than 150 people awaited signature of section 504.
Our Down syndrome diagnosis came on the heels of an early miscarriage, crowning our precious daughter, Hope, the title of “rainbow baby.” Upon reflection, I imagine this loss might have given me the courage I needed to defend Hope’s life on the eight instances I was encouraged to terminate her while she was in utero despite my adamant choice—and I do believe it is a choice—to carry her to term. Her first 3 months were difficult as she went into heart failure and eventually had a life-saving operation, and she’s done nothing but thrive ever since. The more love and faith we put into her, the more she shines.
Of all the things I worried about giving birth in a pandemic, Down syndrome couldn't have been farther from my mind. Logan is now about to turn one. I wish when he was born, I could have seen a year into the future and told myself how much joy he would bring our family and how many life lessons he would teach us. Logan has given me a new perspective, a better one. He has taught me to slow down and enjoy the present and not to rush or take for granted any achievements or milestones, no matter how seemingly small. I have become more accepting of things I cannot control. I've become more aware and accepting of people of all abilities and have made it my mission to teach my children to do the same. Now, almost a year later I couldn't picture my life without him and all 47 of his chromosomes.
When I look at Mackenzie, I see my beautiful, strong, amazing daughter. “Mighty Mack” was diagnosed with leukemia in August 2019, and she spent much of her early cancer treatment inpatient. She was so loved by the other children and families in the hospital; they never once saw her as being different. They saw her as a kid fighting cancer just like them, but she also had the innate ability to cheer them up, daily. I wish the world will open their eyes and hearts to that kind of love.
We are approaching the one-year mark of Madelyn’s heart surgery. I am amazed, daily, at her resilience. She has healed so beautifully, and she’s continuing to grow stronger and smarter every day. One year ago, we were so scared about open heart surgery for our perfect baby, but since then she has taught us that we are not alone in her challenges; she is equally invested and motivated. Like typical toddlers, Madelyn loves life. She is curious and adventurous. She loves people and her family. She loves music and games. Her favorites list includes Frozen, goldfish crackers, and getting into the kitchen cabinets. Without a doubt, watching Madelyn grow and change and heal and work to meet milestones, and smile and laugh and hug, has been one of the greatest things.
My pregnancy with Raymond was hard—nine months prior I had struggled through a late miscarriage with a baby boy. At my 12-week ultrasound with Raymond, I was informed my baby would not survive, but we chose to continue the pregnancy. The next 12 weeks were consumed by comments from unsupportive medical professionals who did their best to discourage our decision. With the love and faith of our family and friends we continued moving forward. Love to me has always been love. I have loved this baby boy since the moment I knew of him, no more or less than his beautiful sisters. Raymond came home to us on March 21st, World Down Syndrome Day, and has been our greatest gift since the moment he arrived. He is joyful, determined, loving, smart, and kind. He is also a handful! But I wouldn’t change him for the world. We’ve been blessed with an amazing early intervention team and an equally impressive preschool family. We were told he would be a burden, but we feel only that he is cherished. He is a reminder that differences are something to celebrate.
It’s easy to get caught up in all the little details and everything you could be doing, but what it comes down to is that if you communicate love with your child, that is enough. Our boy James was communicating with us from day 1. As soon as we held him in our arms, he looked up at us, locking eyes and telling us that he loved us. There are so many ways of communicating besides verbally speaking. James currently communicates by pointing, with facial expressions, with sign language (which he picks up like a sponge!), with a communication device, and he often communicates through drama. James is dramatic! He will retell any story and is teaching himself how to read, and through reading is learning how to speak. His verbal communication is flourishing and he’s going from single words to sentences. I know it’s heartwarming for every parent to hear “Mama” or “Dada” or “I love you,” but when you wait longer for it and see how much effort your child puts into speaking, it just means so much. James brings joy to everyone around him, and he constantly reminds us to stay in the present moment. He is our joy.
We are the proud parents of our 6.5-year-old son, Kjartan. We are advocates of inclusion in school and in the community. Our son continues to thrive in an inclusive educational setting. It is our hope that people will get to know him before passing judgement about what he may or may not be able to do just because he has Down syndrome. Our son is a determined child who continues to amaze us.
This year JP continues to wow me with his openness, warmth, and unconditional love. Someone once said to me that when they finally went to heaven, they’d see God would have the face of a person with Down syndrome. I know that’s a pretty strong statement, and by no means am I saying my kid is divine—he’s a human being with ups and downs just like the rest of us! But JP is pretty awed by anyone he meets and often makes them feel like they are the most special person in the world at that moment. Although the hugging of strangers during the pandemic has been tempered, his new favorite greeting is, “Hi! What’s your name?” Recently he went around and asked eight strangers in a waiting room this question, greeting them each by name in response with his smile, luckily still visible under his visor. Disconnected eyes looked up from cell phones and brightened, and I could see smiles as big as Texas under their masks! During these challenging times, doesn’t the world need more of that?
I continue to be so proud of Ethan. I would say to other moms of parents with special kids like ours is that you will always be surprised. This past year, Ethan taught himself how to log on and do school remotely. There truly is no limit and we just have to love them into whatever their full potential will be. I’m just so excited for what is ahead.
Our life is so normal compared with what I thought it was going to look like. The unknown at the beginning was very scary—Joel had a feeding tube and suspected heart issues—but I wish I could go back to myself the day I got the possible diagnosis or to the day he was born and we knew he was going to have Down syndrome to help myself see what I didn’t understand at the time. While Joel has some different abilities, we have all the normal family things like bedtimes and snuggles and sibling fights. We may have more therapies and appointments, but love is at the heart of it all and it’s just so normal. We all need to be welcoming and embracing of each other because Down syndrome isn’t scary.
Elena Croy is an ordinary mom learning life’s lessons from her two extraordinary children. She and her husband are raising their little girl, who has Down syndrome, and their son, who was born with an upper limb difference, in Ridgewood. Elena chronicles their challenges, triumphs, and all of the goofiness in between at: At Her Own Pace