[This article originally published on Bergen County Moms, March 17, 2023. Photo substituted for AtHerOwnPace.com.]
A few weeks ago, I pulled the slow cooker down from a high shelf of one of my kitchen cabinets, reuniting with an old friend whose services I used to call on more often than I do now. I was making a simple chicken cacciatore, a dish easily prepared on the stovetop for someone who has an hour to spare before dinner to actually spend on cooking dinner, which on this particular day was not me. Once I placed in the ingredients and set the pot to low, I sat down at my kitchen island to do some work on the computer. Exciting stuff, I know. Bear with me.
My husband walked into the kitchen raving about the aromas, but I didn’t smell anything. I thanked him and put my head back down to work until it was time to pick the kids up from school. When I returned home late that afternoon, the house was flooded with the smell of that night’s dinner, and it smelled delicious! Little did I know that I had been sitting in a room so full of incredible smells for so many hours and didn’t even take notice.
But this is true of so many things in life—we grow accustomed to our circumstances and often forget how special, or how difficult, they really are. Just as our senses require contrast, our hearts sometimes require perspective in order to open and soften. I’ve changed so much since meeting my sweet Hope seven years ago that it’s not until I see curious eyes around us in a crowd or am being told that she is not welcome to learn alongside her general education peers in kindergarten that I remember we look and sound a little different than what most people are used to.
This coming Tuesday, March 21st is World Down Syndrome Day, a calendar date chosen to recognize three copies of the 21st chromosome (trisomy 21), the genetic marker for Down syndrome. I know it’s not realistic to support every cause, every time an awareness day or month pops up on the calendar, which is why INCLUSIVITY is the single most important mindset we can foster to make the work of caring for all people as streamlined as possible, without sacrificing the energy we reserve for our loved ones.
As we pursue inclusivity, we must remember that all people with Down syndrome are whole and complete. All feel sadness and joy, pain and pleasure, fear and excitement, embarrassment and pride. All communicate. All have the capacity to learn and love. All have a special skill or talent to be shared with the world. All have the basic human right to take up space without anyone else’s approval. None need to be fixed or cured. So what on earth are we thinking when we segregate these individuals, first to different classrooms, then to different schools, then to different work settings with less pay and less dignity? What on earth was the point of federal legislation protecting our children’s right to a public school general education with supports if we’re just giving up on them when the going gets tough? How can any physician or medical institution deprioritize an individual in need of an organ transplant based solely on their disability? We’re making incredible progress on these issues, but this is not what 2023 should look like.
Our children are not optional, and we must speak up for them every single time they face prejudice for their disability. Any time we become complacent—because advocacy is simultaneously invigorating and exhausting—we must take it upon ourselves to step away and come back with a renewed perspective that choosing to honor the value of people with Down syndrome and related intellectual and developmental disabilities is the responsibility of every able-bodied person pulling the strings.
Continuous exposure to disability is the clearest path to understanding and acceptance, and we can do this in a variety of ways. Here are both some upcoming and ongoing opportunities to welcome Down syndrome into your daily life, even if you do not personally know anyone who has Down syndrome:
- Tune into the Today Show on NBC on Tuesday, March 21 for a celebration that includes dozens of families with Down Syndrome on the plaza, starting at 7AM.
- Participate in Racing for 3.21 or make a donation to the National Down Syndrome Society, the leading human rights organization for all people with Down syndrome.
- Check out the new jazz album Mark Tremonti Sings Frank Sinatra. Mark was the lead guitarist of the band Creed and is a current member of the band Alter Bridge. When his baby girl, Stella, was born with Down syndrome two years ago, through much loving effort he worked with surviving members of Frank Sinatra’s original band to develop, record, and release a cover album, the proceeds of which directly benefit the National Down Syndrome Society. (We saw him perform live and he’s truly fantastic!!)
- Check out the movie Champions, with Woody Harrelson, now in theaters.
- Support Dear Mama, the book, a compilation of heartfelt letters written to new mothers beginning their journey raising children with disabilities, publishing this spring.
- Watch The Peanut Butter Falcon if you haven’t already. There’s no film like it.
Here are some tips for guiding children through the practice of inclusivity:
- Let’s cooperate without accolades by declining awards and service hours that correlate with time spent with classmates with disabilities and explain to teachers why: Put simply, children with disabilities do not receive reciprocal community service hours for teaching acceptance to their non-disabled peers.
- Invite a classmate over for a playdate or to hang out—you might have more in common than you think.
- Volunteer at Camp Sunshine or other summer camp program for disabled children.
- Join Unified Sports or volunteer for another school- or community-based program that supports peers with disabilities.
I’m not going to sugarcoat it: raising a child with Down syndrome isn’t easy. Many children with DS experience medical complications early in life, from the very early GI and heart issues that require lifesaving surgeries in infancy, to vision and hearing loss, to autoimmune disorders that require lifelong interventions, to the downright terrifying risk and reality of leukemia. Some have dual diagnoses of autism or ADHD. All have some level of hypotonia, or low muscle tone, that affects gross and fine motor skills. Some experience hyposensitivity and require sensory diets throughout the day. Many will face early onset Alzheimer disease.
Knowing all of this and living some of it, I wouldn’t trade Hope for anything. Year after year my family and families throughout northern New Jersey continue to live in gratitude for the compassion and support of the Bergen County Moms community.
Thank you for taking this journey with us, and don’t forget to wear your “crazy” socks on Tuesday, March 21 to initiate conversations about Down syndrome!
Happy World Down Syndrome Day from our family to yours!
Thank you 😘
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Beautifully said , Elena !Happy World Down Syndrome day !
div dir=”ltr”>Take care,
Terrie O’Connor Realtors
div>75 E Allenda
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