Monday, October 6, 2014


Before Pacey was born I wasn't really aware of Down syndrome. Sure, I'd seen Life Goes On, and there was a person a couple generations back in my family who I knew had had Ds, but I wasn't exactly aware. I knew it existed but beyond that? Nada.

I attended first grade at a montessori school that provided special education services to children with (I'm assuming) more significant disabilities. It was equipped to provide access for children in wheelchairs, that much I remember. I don't recall having a lot of contact with the children receiving special ed services, although I believe each of my siblings may have had more experience there. Beginning in second grade, I was actually the recipient of special education services by way of a program for gifted (hate that descriptor) learners. It was housed in a different school than I was zoned for in my neighborhood, but I was transported via bus through special education provisions. I rode the proverbial "short bus" to a bus depot where I got onto another bus that took all the kids in my program to our school. I rode the bus, therefore, with children qualifying for special education services for a number of different reasons. I don't remember much about it except for a child whose behavior made me really uncomfortable and no one talked about why.

I am utterly ashamed to say it now, but at least through high school and very likely beyond, I used the word "retard" as a pejorative term. I enjoyed humor at the expense of people with cognitive disabilities. I consider myself to be a sensitive, kind and educated person and still. That was my behavior because I wasn't truly aware.

When my baby was diagnosed with Down syndrome I was blindsided by the very fact it had happened (to ME?) but I also had zero awareness of what it really meant. I was completely unaware of Down syndrome as a contributor to the diversity in my community. I think I've written before about the fact that in Southern California, even with my hyper-awareness after Pacey was born, I just didn't see very many people with Down syndrome. This became much more obvious after we moved to Minnesota and I began seeing people of all ages absolutely everywhere. I made connections, have made some of my closest friendships, and have seen many amazing things accomplished by people with Down syndrome.

The awareness goes further than that, though. I've become aware of the existence of all different types of disabilities and how they affect both their bearers and their families and communities. Pre-Pacey, I'd never have felt comfortable approaching a child (or adult) with a visible disability and engaging them. I think, if I'm being honest, disability may very well have continued to exist in the very periphery of my world vision. I am so grateful for how my community has been "unlocked" in this way for me. I'm aware and therefore I can teach my kids to be aware, going far beyond just Down syndrome, of differences and acceptance.

It's never too late to become aware, and I guess that's why I, like many other people whose lives are touched by Down syndrome choose to blog during the month of October. Awareness made me an immeasurably better person and I think it can do the same for others.

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