Sunday, October 19, 2008

I know nothing about special needs

This is a fantastic writing from a mom of a child with special needs. I warn you, it's a bit political...

I know nothing about special needs.
Posted 10/17/2008 3:02 AM CDT
Let me repeat that, I know nothing about special needs.

Yes, my son Elias has multiple disabilities that affect his balance, movement, vision, communication, and breathe, and yes I’ve immersed myself in the disability world by reading books, blogs, articles, laws, and enough bureaucratic paperwork to fill a truck, but I am merely a tourist in this world, hoping to learn the culture so I can advocate for my son.

I can’t claim to be an expert. I’m not even an insider. I’m just a mom who loves her child.

For McCain to say that Sarah Palin “understands special needs better than almost any American I know” just shows how out of touch he is with the disability community.

Does he know anyone with special needs?

Because surely they would know more about living with disabilities than the people who love them.

To claim that a new mother of a child with Down syndrome knows more about special needs than any other American is an insult to the hundreds of thousands of people who every day face the barriers of an able-bodied world. Or who despite cognitive differences go on to earn a Phd. Or who play ice hockey without full sight or compose music they can’t hear. Or…

…the list goes on.

And what about the writers, speakers, advocates, and organizers who fought for the Individuals with Disabilities Education Act or the American with Disabilities Act?

I think they know a little more about special needs than a governor whose only disability related act was to cut funds to programs that support people with needs. Who sat across the table from me and a roomful of people with autism, Down syndrome, cerebral palsy, vision loss, and other disabilities, as well as the people who love them and work for them, and smiled as she listened to our stories but failed to grant the Key Campaign the funds we requested to increase community services and research.

And now she has her baby Trig.

You’ve probably seen him on the national news. He’s cute huh? I cried when they showed his sister Piper licking her fingers and smoothing his soft baby hair. I’d like to see more children with disabilities on TV.

But not as political pawns used to pull heartstrings.

We’d see more children with Down syndrome, if 9 out of 10 women didn’t choose to abort their babies after receiving the invitro diagnosis.

That’s 90 percent. 90 percent.

If McCain and Palin override Rowe vs. Wade, while simultaneously enacting a spending freeze, how would these all these Ds babies receive services?

And believe me I want Trig to have more peers, but they won’t all be born into families with the means to hire caregivers and privately pay for therapy, medical appointments, and brain-building sensory toys.

And what about the autism epidemic that McCain claims Palin also knows all about?

Sure she has a nephew with Autism and cousins on the spectrum but, again. this does not make her an expert. I have a cousin whose gay but I can’t claim to speak fro the GLBTQ community.

I know a little bit about cerebral palsy, visual impairment, and cognitive delay from my son. Enough to fill a story or too but I couldn’t come close to finishing a book, let alone claim to know enough about any of these diagnosis to know what is best for other children who experience their own unique versions of symptoms, impairments, and skills.

Just because I can play soccer and ice hockey does not mean I can play basketball or golf. And don’t even think about getting me to do the long jump.

I got no jump.

And I guess this is what also struck me about McCain’s comments, as if he could sweep whole populations of people into the idyllic face of baby Trig.

As if Sarah Palin has even had time over the past six months to immerse herself in the world of special needs, while also campaigning for the Vice Presidency. She may be smart, motivated, and gutsy but she’s undergoing a crash course in foreign policy, media relations, debate training, and Washington politics, not Medicaid, therapy, disability law, and advocacy.

And she hasn’t even gotten to IEPs.

Or stood next to her comprehending son as she wrestled with how to answer a curious neighborhood kid’s question, “What’s wrong with him?’

Trig is still a baby and everybody loves babies-- especially when they don’t come attached to an oxygen tank or a feeding tube or startle the cooer with an obvious deformity on their hands or face.

I do not mean to underestimate the profound affect of having a child born with a diagnosis, but right now he is not a whole lot different than other babies. Sure his features may reveal his chromosomal differences but what he needs right now is sleep, milk, snuggles and fresh diapers.

Like most babies.

Even after 94 days in the NICU, multiple surgeries, and medical data that practically guaranteed Elias would have special needs I didn’t really understand what that meant when Elias was still spending the bulk of his time nursing and sleeping.

Sure we had a lot more professionals involved in our life than most new families and we had a portable oxygen tank in our living room, and a variety of unpronounceable medications to dole out, but I still didn’t really get it.

I still don’t.

Even now, with multiple diagnoses, I still hold onto a vision of Elias being “normal” one day.

I can still separate myself from my son and walk unencumbered away from the world of special needs.

I won’t.

But I can.

And that’s what separates me from Elias, and every individual who lives with special needs, and it’s why those of us with full capabilities cannot claim to be experts.

Its why we need to listen to those who truly understand because they live it, and can’t be fooled by political rhetoric to believe that substance follows their fashionable claims.


Blake Kelly said...

I've had people ask me if i wasn't excited about Sarah Palin because she too has a special need child. Now I have the words to explain why that is such a ridiculous thing to ask me.

Kate J said...

I agree, she doesn't know all she's in for at this point! I'm hoping she will grow into the role of advocate for all of us, tho.