Mid-August to October is the hardest time for any special needs mom. It’s the time when one starts fighting for the services from the Department of Education that are mandated for your children, but have to be fought for anyway. It’s the time when you feel the indifference of the bureaucracy, yet to you and your family, every decision and every choice means so much to the special soul that you are advocating for.
It’s so frustrating that I felt compelled to write on Facebook “Being a mom of a kid with special needs has enough challenges. Dealing with Department of Education is a form of cruel and unusual punishment! It’s beyond exasperating.” I wanted my friends who don’t have a special needs child to understand the frustration, and of course all the special needs parents sighed in agreement.
That said we all love our special needs kids intently. I challenge you to find one parent who would rather not have their child. This is not a third world country where special needs children are tethered to a pole. We live in times of abundance, laws that mandate the rights of kids in society and in the educational system. We live in cities that provide free early intervention, there are support groups and advocacy groups. In spite of the frustration and extra hours involved our kids in 2014 have unprecedented access to resources and laws protecting them and inclusion in day to day society. So I was astounded to read this article by a top scientist saying it essentially a moral duty to abort fetuses diagnosed with Trisomy 21.
I am so happy that I am part of the small minority that did not screen or abort. In the US 92 percent of women who have pre natal screening that identify Down syndrome abort. So the only babies born with Down syndrome are born are from religious Orthodox Jewish, Muslim or Catholic homes, very poor homes where screening is not routinely available or fertility parents who don’t want to risk the long tried for pregnancy.
For all the shock, challenge and stress of a special needs child I can only say that my life in enriched by Caily and she is the light of the Samuels home and the joy of her community and perhaps Richard Dawkins would like a playdate with Caily. He may just realize he is wrong.
Originally published: September 14, 2014
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