Ethan Rediske (Used with permission) Ethan Rediske (Used with permission)

Should government funds be spent trying to educate severely disabled children like the late Ethan Rediske, who was severely brain-damaged, blind and confined to a wheelchair? Andrea Rediske, his mom, explains in this powerful post why the answer is “yes” — but why insisting on giving him and other severely disabled children standardized tests is ludicrous.

Andrea Rediske, of Orange County, Fla., fought a long battle with the state Education Department over a requirement that Ethan take an alternative version of the state-mandated Florida Comprehensive Assessment Test. Ethan, who passed away at the age of 11 on Feb. 7,  also suffered from cerebral palsy and was blind. His mom managed to win a waiver from the state last year so that he did not have to take the test, but this year, while Ethan was in a coma in a hospital, she and Ethan’s special education teacher were required to fill out paperwork proving that he was not in any condition to take the exam.

There is now a bill called the Ethan Rediske Act that has been introduced in the Florida legislature that would make it easier for families to obtain test waivers by allowing local authorities to exempt disabled students from taking these high-stakes exams rather than continuing the current lengthy process that involves state officials. Whether or not legislators will even consider it is up in the air.

Here Andrea Rediske writes about why even severely disabled children like her son deserve the right to be educated — but that efforts to test them must end.

By Andrea Rediske

As I have come forward with Ethan’s story, many people have asked me, “Why bother educating him at all? Why spend district, state, and federal money on a child who is severely brain damaged, cortically blind, wheelchair bound, and who makes no purposeful movements? Why waste the time of educators for a child who will never become a productive member of the work force?”

Here’s why: As all educators know, some educational gains cannot be measured by standardized tests or benchmarks set by legislatures. Educators know that the work they do with children is not about only about testing and measurable gains, but it is about development and quality of life as well.

Ethan’s incredibly talented special education teacher worked with him for many years and was highly attuned to his particular needs and abilities. One day she told me that she noticed that Ethan raised his left thumb ever so slightly when something happened that he liked. I am his mother, and I didn’t notice this; it took the insight and skill of a special education teacher to make the connection. For a child who made inconsistent responses to stimulus, this was a quantum leap.

For the first time in his life, Ethan was able to communicate. “Do you want more music, Ethan?” Thumb lift. “Do you want more story, Ethan?” Thumb lift. “Do you want more bubbles, Ethan?” No movement. Ethan was able to indicate “yes” and “no.” We rejoiced and wept over this tiny thumb lift. “Thumbs up for music, Ethan!” “Thumbs up for more, Ethan!” From that point on, Ethan’s teacher searched for ways for Ethan to communicate through switches, touch cards, and programs for the cortically blind. She opened up his world and helped this child who seemingly had no voice to communicate his desires to his family, teachers, and therapists. As she visited him on his last days on this earth, I sat outside his room as she worked with him, and I heard, “Thumbs up for more story, Ethan.” Her voice cracked with tears, knowing he would die in a few short days.

As we have come forward with Ethan’s story, his talented, intuitive ESE teacher has been harassed by the school district for disclosing the ocean of red tape that she has to swim through for each of her disabled students. This single mother of two children has faced censure from her principal and her job is in jeopardy because she dared to speak out. Other teachers face the same harassment as they are forced to administer tests to their students that they know will jeopardize their happiness, well-being, and even their health.

The school district and the Florida Department of Education may have gagged the teachers, but they cannot stop me from speaking. I urge the Florida Department of Education and the Florida Legislature to support and pass the Ethan Rediske Act to exempt disabled children from the abuse of high-stakes standardized testing.

I urge the legislature to go further to protect students who are suffering at the hands of administrators and legislators who demand these tests. Protect the devoted teachers whose pay and resources have inexplicably been tied to these tests. This abuse must end now.