A round of the common cold left all of us cranky and couch bound this past week, and my daughter with Rett Syndrome in the hospital with dehydration and low blood sugar. From the same cold. A harsh reminder of her medically fragile position among us. Now she is better, and I am back to posting, reading, thinking and learning. Grateful to pull through another crisis and see her happily on her way to school this morning where she will be greeted by buddies and work on her most amazing computer.
Of Arne Duncan in Ed Week this week: "He’s not been a great supporter of special ed. I don’t think he dislikes special-needs kids; it just wasn’t on his radar screen during the time he was here,” said Rodney D. Estvan, the education outreach coordinator for Access Living."
I read this Ed Week after spending another normal day at the hospital. I wondered, why is this not on the radar? No one would say don't treat her. No one would advocate I not spend the money on the ambulance, the emergency room visit, the IV fluid. Not many people would say, just let her die.
But no one wants to pay for school either. And I wondered, is it really just that special education is not on the radar? I am sure that if Arne Duncan or my local board members were there with me, they would have been compassionate. I am sure that seeing her wake up, and give that brilliant smile would have touched them as it did everyone else.
Why is the emergency so compelling, and the day to day is so boring? It is no less important to toilet train her (at six years old) and to teach her to use her PECS icons to ask for things rather than scream, and to assess her need for a computer than it is to give her IV fluids when she is sick.
And it made me wonder, this experience, juxtaposed with the Ed Week article, do education policy makers just not have enough contact with special needs kids? Is it really as simple as not getting it? I really prefer this theory over the malice and ill will scenario.
I would like Arne Duncan and every policy maker in the country to sit down and reconcile a double bind our politics has created.
On the one hand, we as a nation loathe abortion, so much so that a substantial group of people would like to see fetuses with identified genetic mutations legally a protected class of citizen. Spare the fetus.
On the other hand, many of the conservatives who hold this anti-abortion position are the same people who are crying out to remove IDEA funding from the stimulus package, and who strip Medicare for the disabled. Special education and children with disabilities are seen as an encroachment, an entitlement, a burden. If special education is seen at all, if it is on the radar, it is because "it" is too expensive. Policy makers seem to forget that "it" is made up of children. Choose life, but spurn the child.
These positions together? Spare the fetus, spurn the child.
It is time that our kids get on the radar, not just when they are at death's door, but on the normal days too. What we do in between emergency room visits matters too. And, surprisingly, it matters more. It makes a difference not just that they live, but how they live.
How about: Spare the fetus, support the child. I think that will be my new motto.
Look out Mister Duncan, we intend to enter your air space.
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