We have just been on a Sukkot road trip with the family in Colorado and I had a lot of time to observe Caily in action. At home, it’s always through the filter of therapist feedback. She has over 20 hours a week of therapy and we are always discussing her progress, her milestones, her issues in each domain. While away, she was not Caily with Down syndrome – just a 3.5 year old kid in the Samuels Family on an adventure.
I wish the naysayers and people who denied her acceptance (or even an assessment for inclusion) to the local Jewish Day School could see this kid. Likewise for the supposedly religious lady who came to visit when Caily was 4 days old who said to Gavin as he was holding our newborn, “I cannot believe you did not do an amnio and abort” or the doctors at Mount Sinai who shared their grave prognosis. One of the scariest books I have ever read was part of the series, “What to Expect when you’re Expecting”. They have a book entitled, “What to Expect when you have a baby with Down syndrome”. I read that book filled with terror that I had actually given birth to a monster who would need every form of medical intervention known to man.
Over the 10 days away, our family went from saying “she’s amazing” to “she’s a SUPERSTAR” to finally “Caily is a ROCK STAR!”
Caily is at Chabad Pre-School in a typical three-year-old class and by all accounts doing amazingly well. Over the chag, we spent the holidays at Chabad in Boulder and Aspen. No-one knows us or her diagnoses. She played and participated amazingly well and guess what? No-one even realized she has a diagnosis. A diagnoses that makes most people cringe at the thought! In fact, I was talking to a developmental pediatric psychologist who was at services. Her professional life is all about evaluating kids with developmental delays. We started talking about Caily and she asked if she has Down syndrome. She said that at first she thought “yes” but after seeing Caily’s interactions with other kids and her communication with me she thought not.
We went on a very long trail hike and Caily insisted on walking over a mile on the rugged path. It was erev Simchat Torah and Caily and her siblings were singing all kinds of Torah songs. She was having a great time – squealing with delight and fully part of the action. I said to Gavin after watching her, “How could anyone question her right to exist?”
She is adored by her siblings. They see a sister and not a special needs sibling! To me, she is actually quite gutzperdik and naughty (in a cute way), a three-year-old challenging her limits. I love it when she jokes with us and then declares, “Just joking!” It’s her boldest declaration of “I get it.”
Caily’s favorite words are “me too”. She always wants to be included in activities and action. I hope that our friends, family and community respect her wish of “me too” and all her unconditional inclusion. Include her just as the kids at Chabad do – as just another kid.
Metroimma, please share your stories of inclusion for your typical or special needs children…
Originally published: October 25, 2011