Last night, I spent time with Ethan Rediske - an 11-year-old-boy who, doctors say, is in the final days of his life.
His lungs are filling with fluid. The only noise he makes is an occasional moan. His parents can do little more than comfort him.
Yet his mother, Andrea, had to also spend some of Ethan's final days convincing the school officials that Ethan is not capable of taking standardized tests -- the FCAT equivalent for the disabled -- since he is barely alive.
Now, Ethan could never take these tests. He has severe brain damage and cerebral palsy. He couldn't even make purposeful movements with his arms. He is also legally blind.
But in this test-obsessed state and country, Ethan's teacher (who would visit his home, read to him and use his hands to make art projects with glitter and glue) was required to administer tests measuring his progress -- and the teacher's supposed competency.
He was asked questions about things like peaches -- questions he couldn't answer, not only because he couldn't speak, but because he had never tasted a peach. He was tube-fed.
The only way Ethan could opt out of taking these FCAT equivalents (Florida Adapted Assessments) was for Ethan to get permission -- personally granted from Florida's Secretary of Education.
Legislators vowed to make reform last year. But it was minimal.
So now, in the final days of Ethan's life, his parents have spent some of their time trying once again to opt out. Last week, they got a hospice nurse to send a letter to Orange County Public Schools saying that the boy was currently occupied dying .... and not up to taking tests.
The Rediskes could have ignored this and let Ethan die in peace. But they didn't want Ethan's special-education teacher, a woman they describe as "a blessing," to have her pay docked or evaluation affected simply because they didn't go through the multi-layered process of requesting an exemption.
It's more than insanity. It's just mean.
On Sunday, I'll be writing a full column about Ethan's story -- and the quest for common sense in teaching and nurturing the profoundly disabled.
Already, though, Ethan's case is becoming a rallying cry for those who want sanity back in standardized testing and humane treatment of special-needs kids.
Yesterday, the Washington Post got hold of the email Andrea Rediske sent me and School Board member Rick Roach and penned this piece: "Parent of dying boy has to prove her son can't take standardized test."
And you can read my original column I wrote last year about the Rediskes and other families facing similar plights here: "Florida's test-obsessed style of education hits disabled families hard."
In the meantime, say a prayer for or send good thoughts to Ethan and his parents.Copyright © 2015, The Baltimore Sun