“The more I learn, the more I realize how much I don’t know.” -Albert Einstein
When I became pregnant, I was certain I would get by on instinct. I would absorb only the best advice and tune out those whose words didn’t resonate with me; my intuition would fill in the gaps. Even when we’d learned of Hope’s Down syndrome diagnosis, I knew I still had it. No matter what stories were circulating and what medical professionals had to say about her, I was her mom and I’d know what to do once she was born. I could follow the medical guidelines. I could put our own spin on the research.
But my baby couldn’t breathe in her car seat. My baby was too tired to eat. My baby would spit up her heart medication after her 3am feeding, if she could even be roused for it. My baby was dosed with fentanyl and morphine. I was advised to pump breast milk by the pulsing of a little yellow machine so I could skim off the cream that would form on top after it cooled off in the refrigerator. No part of this felt natural, and none of my instincts were useful.
In 1910, the average life expectancy of a child with Down syndrome was 9 short years! That’s how old my daughter will turn in two months. Today, 80% of adults with Down syndrome live to be 60 years old, though 1 in 2 are terminated before birth throughout New Jersey. We have scientists and researchers to thank for developing life-saving interventions—for our population, predominantly those in cardiac, gastrointestinal, and hematological services—and civil rights activists to thank in bridging access to these interventions and so much more.
While advances in medical treatments save precious lives, including Hope’s and many of her friends’, our society has a long way to go in supporting adults with intellectual and developmental disabilities and their caregivers with respect to housing, employment, and financial security.
Mistreatment of many people living in group homes is an issue, one whose precedent permeates modern day culture through ableism and presumed incompetence.
Subminimum wage is an issue, one whose precedent may be set when schools fail to advance meaningful goals in a student’s IEP (individualized education program).
Limiting a disabled person’s savings and assets to under $3,000 if they marry another disabled person and both receive SSI (Supplemental Security Income) is an issue, one whose precedent may be set when we unilaterally provide community service hours to typically developing students who spend time in programs with disabled peers.
Awareness of Down syndrome is understanding that equity is hard-earned and easily lost if we’re not careful. The tone we set with daycares, schools, employers, and even our own families matters. The dreams our loved ones set for themselves matter. Who we put into office—through local, state, and federal elections—matters. Respect for humanity matters.
This month, encourage your little ones to dream big! I’m sure you already are. Maybe also check in on your big ones to make sure they’ve not forgotten how far their dreams can take them.
“I wish Hope a life rich with authentic friendships, where the music never fades!”
-Elena Croy
“I wish Logan a life of happiness, where his differences are celebrated!”
-Jessica Abrams
“I wish Sydney a life surrounded by people who love and support her, always.”
-Brianna Hamill
“I wish Raymond a life full of opportunities to shine, thrive and share his joy.”
-Sue Ranft
“I wish Lucas a future where he will have all the opportunities to become anything he dreams of being without limitations!”
-Jackie Legato
“I wish Zachary good health that sets him on a path for a beautiful life.”
-Sharon Galasso
“My wish for JP is that he be given the opportunity to reach his fullest potential and develop his gifts, and that he knows he is loved and can share that love and his gifts with others.”
-Lori Karg
“I wish Joel a life of meaningful relationships and independent living, with love and support.”
-Janine Ehresman
“Colin, promise me you’ll always remember: You’re braver than you believe, stronger than you seem, smarter than you think, and loved more than you know (Christopher Robin).”
-Kelly McEnerney
“I wish that Mackenzie forms long-lasting relationships with all peers, is valued as she is, is empowered to show her worth and is provided opportunities to thrive!”
-Lauren Murphy
“I wish for Ethan a life of endless possibilities in a world that grants him dignity and respects his unique contributions.”
-Kimberlee Bradshaw Archibald
“We imagine James living independently and obtaining fulfilling employment, which will allow him the freedom to choose how he spends his time and who he spends his time with.”
-Courtney Randazzo
“I wish for a life of acceptance, inclusion, and joy for Vera—the same amount of joy she brings to us!”
-Francesa Jaffe
Thank you for joining us as we celebrate Down Syndrome Awareness Month!
I would be remiss if we didn’t also acknowledge our friends who are working to advance awareness this month for sensory processing disorder, blindness, dysautonomia, dwarfism, ADHD, Rett syndrome, spina bifida, learning disabilities and dyslexia.
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 upper limb differences, in Ridgewood. Elena chronicles their challenges, triumphs, and goofiness at AtHerOwnPace.com. Elena is proud to serve as a grassroots Down syndrome advocate for the National Down Syndrome Society.
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