A Lucky Life to Live

[This article originally published on Bergen County Moms, October 15, 2021]

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.
  • Research and visit a business run by people with disabilities. (Hint: Ethan and the Bean is nearby in Little Falls! And Collettey’s Cookies delivers nationwide.)
  • 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.

If this slideshow is not viewable in email, please click into the article to view in your browser. And be sure to visit this article on Bergen County Moms for the stories of these moms—my friends—and their beautiful children, all in the Bergen/Passaic area.

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