Monday night was simply delightful. I had my usual evening cuddle time with the three kids. We were all on my bed and Caily was hiding under the sheets and we all called, “Caily where are you?”, and then I pulled the covers down and she squealed with delight. We then progressed to tickle Yoni. Caily was a very active and agreeable participant. We were all giggling so much and having fun. I thought to myself I have such “special” children…..and then it crept in that I also have a “special needs kid”. To me she is special in spite of her needs but that’s not how the world sees it….
My day was contrasted on Tuesday when I continued my quest to find a two-year-old school program. The proverbial door was being slammed shut. “We do not accept special needs kids.” Before I could answer “But she is special …she just has special needs”, I recognized I should move on to an environment to one that wants her for her special needs too.
It still amazes me how far away we are from an enlightened and welcoming educational system for people with Down Syndrome. Yes, we live in a more politically correct world. Yes, that’s the one where people bend over backwards to say she is “so sweet”, “oh so friendly”, “look how pretty she is”. That’s far better than insults… I know….but, in many ways, the world has not changed.
Gavin said soon after Caily was born that when you have a special needs kid, you should brand “activist” on your forehead. Oh, so true. Lucky for Caily, she got an obsessive type A advocate who will always fight for her needs.
Reflecting back to Caily’s birth 2 years ago, I was so scared of what it meant to have a kid with Down Syndrome. What would be the impact on me and my other kids? Will we be able to afford her, give her the best? We are such a public family how would this affect the community interaction? I read books and articles that created generic pictures of what a Down Syndrome person is like. I am grateful for the sound advice that resonated – she is a baby first and then she has a diagnosis. A kid with cancer is not cancer but a baby. Likewise Caily was simply My Baby.
As time has moved on, I see the world so differently. Caily is cute, adorable and interactive. She is the light of our lives and that of our extended community, possibly over-loved and mothered every waking minute with adoring attention. And no, she is not the generic retarded person with a series of physical conditions that I read about in the books. In fact, besides being a charmer extraordinaire, she is so high functioning that people question her diagnosis. Her therapists applaud her cognitive skills that are ahead of her cohort of typical peers.
The greatest gift Caily has given me is the different lens I now have to view the world. She is also my tikkun – my correction. Those who know me know that I am always stressed, racing at a million miles an hour. Caily teaches me each day how to take it slow and appreciate life. Not to get frustrated. She has taught me that people – not just my kids but also my community – can love unconditionally.
Now I wait in hope for the rest of the world to start assuming these kids have potential, so much potential. Instead of assuming they will fail, the world should assume typical benchmarks for success. Let them strive to reach for the stars…they may never leave earth but most of us never reach the stars either.
Originally published: June 2, 2010
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