Ethan Rediske was born with cerebral palsy, severe brain damage, and blindness. He was also born into a family that advocated and fought for his education. You may have heard about him and his mother, Andrea Pratt Rediske, fighting the Florida DoE last year. You see, in the world of high-stakes testing, every child must be tested and Ethan was no exception.

Earlier this month, as Ethan lay comatose under hospice care, Andrea and her family had to prove yet again that Ethan was unable to take the Florida Comprehensive Assessment Test (FCAT). 11-year-old Ethan passed away February 7th.

Ethan’s mother spoke to the Florida Department of Education, you can see her video here.

She also just posted this comment on the Badass Teacher’s Facebook page:

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.

My heart breaks for this family and unfortunately their’s is not a fringe case. Many special education students across the country are forced into inappropriate high stakes testing, leaving their parents with little recourse. It perfectly demonstrates how absurd our obsession with testing and scoring has become. Common sense was flung out the window long ago. Ethans Act is a way to return some of it to the classroom.

Just days after Ethan’s death, State Rep. Karen Castor Dentel filed House Bill 895 “The Ethan Rediske Act.” Designed to streamline the process that delivers waivers to students with severe disabilities, Ethan’s Act will hopefully prevent this sort of insensitive idiocy from happening again.

#EthansAct #EyesOnDOE