Just a few weeks after her 11-year-old son died, Andrea Rediske had resumed her crusade against Florida’s education requirement that all students — even those who are mentally disabled — take a standardized test.

Even though Rediske’s son was severely disabled and had brain damage that left him with a limited mental capacity, Ethan still had a special education teacher who his mom says helped enhance his quality of life in a way she couldn’t.

Last year, Rediske had to fight for Ethan to be granted a waiver to avoid having to take a test that he couldn’t really understand. She was stunned when she had to appeal for an another exemption this year, needing to prove that her son physically couldn’t complete it because he was in a morphine-induced coma and dying. The waiver came the night before Ethan died on Feb. 7.

Ethan died in Feb. 2014 but his mother is still fighting that severely disabled children and their parents not have to jump through hoops to get exemptions from required standardized tests. (Image source: Andrea Rediske)

Ethan Rediske died in Feb. 7, 2014, but his mother is still fighting for severely disabled children and their parents to not have to jump through hoops to get exemptions from required standardized tests. (Photo courtesy of Andrea Rediske)

“I just thought, this is ridiculous. He was dying. We were grieving,” Rediske told TheBlaze. “We were going through such a horrible turmoil and the school was harassing us” for proof that he couldn’t take the Florida Alternative Assessment, the test for children with special needs who would not be appropriately evaluated with the regular Florida Comprehensive Assessment Test.

Rediske is now trying to make sure no parent or child has to go through what her family did again.

‘Afterward he would have seizures’

Some might wonder why a boy in such a mental state, who was cortically blind and had other ailments, had a public school-funded special education teacher. What’s more, even when he was brought home to die last November after suffering a collapsed lung, the teacher started coming again after the holidays as Ethan still hung on.

Some might say, why bother?

Rediske said she didn’t have the skills or resources to reach her disabled son the way professional teachers did.

“They have done things that stimulated his brain,” Rediske said. “When his teacher came into the room he turned his head and smiled. Even on morphine and valium to ease suffering, he would smile at her. She brought joy and beauty and happiness to his last days … you can’t quantify that.”

Andrea Rediske, her husband and their son Ethan. (Image source: Andrea Rediske)

Andrea Rediske, her husband and their son Ethan. (Photo courtesy of Andrea Rediske)

When Ethan had to take the alternative assessment to the FCAT in the 2010-2011 and 2011-2012 school year, his mother said the two weeks it took for him to complete the test with a teacher coming for about 45 minutes three times a week were exceedingly stressful for him.

“Sitting in a wheelchair for long periods of time was bad. It was mentally stressful for him,” Rediske said. “Afterward he would have seizures … It really caused him physical harm sitting in his chair.”

Aside from the physical effects, Rediske said the test was completely inappropriate for Ethan. There were questions about shoes, alarm clocks and food. Ethan didn’t wear shoes. He wouldn’t have known what an alarm clock was and he didn’t eat food as we would describe it.

“He’s blind. And they’re showing him pictures of a giraffe, a monkey and an elephant — and asking him which one is the monkey,” Orange County School Board member Rick Roach said, as quoted by Orlando Sentinel columnist Scott Maxwell last year. “I’m watching all this and just about to lose my mind.”

What did Ethan know?

“His world was our home and our walks,” Rediske told TheBlaze.

Standardized testing — and alternative testing options for students with special needs — is a federal requirement in all states, not just Florida.

“Your child’s involvement in the assessment can help inform and enhance classroom instruction by providing information on your child’s areas of strength and/or areas for improvement,” a fact sheet about the alternate test states.

The Florida Department of Education declined to comment on the testing requirement for severely disabled students, but a spokesman did say that the alternate tests are individualized with input from parents and teachers.

‘I won’t stop speaking’

Image source: Andrea Rediske

Photo courtesy of Andrea Rediske

The reason we don’t hear more from parents experiencing issues such as this, Rediske said, is because “they’re exhausted.”

“To have something like this on top of that is one more dragon that I have to fight,” she said of the test. “I want to be an advocate for parents like me, because they’re exhausted. I will speak to Florida legislators. I will speak to Congress if I have to.”

Though the mother said she needs time to grieve and recover, she added, “I won’t stop speaking.”

Most recently, Rediske spoke to the Florida Board of Education about the issue.

Roach, the school board member, has been helping champion Rediske’s cause. He told TheBlaze that he didn’t think board members knew just how severe things were for Ethan or what the boy looked like until Rediske spoke.

Roach said he plans to speak with legislators to pass the “Ethan Rediske Act.” He called the test totally meaningless to a child like Rediske’s son.

“It’s like you and I getting a test in a foreign language we don’t understand. It’s the wrong test, the wrong reason and [gives] zero results,” he said.

Watch Rediske speak before the board about the act:

Earlier this month, Pam Stewart, Florida’s education department commissioner, wrote a letter to teachers about the “political efforts to attack assessments by using the tragic situations of children with special needs.”

While Stewart expressed her “deepest sympathies” to parents of these children, she defended the test requirement.

“For all students, it is important that we measure progress so that we measure all children regardless of their circumstances,” she wrote.

Image source: Washington Post

Image source: Washington Post

Roach called the letter “outrageous and insensitive.”

“I think that standardized testing from people like Ethan to honors students in America is the Achilles heel of this whole thing,” Roach said, explaining that he thinks some administrators put too much clout on the tests. “Their entire accountability system is based on that test result.”

While he’s not entirely against standardized testing, Roach said it needs to be used for what it was designed for.

“We need to use multiple measures of student progress instead of relying on a single measure,” he added, saying that standardized testing as a “snapshot of you [not] an entire photo album” that is being used in some cases to determine things like labeling of schools and retention.

This story has been updated.