(Update: It is with sadness that I report that Ethan Rediske passed away on Friday, Feb 7, 2014.)

Andrea Rediske’s 11-year-old son Ethan, is dying. Last year, Ethan, who was born with brain damage, has cerebral palsy and is blind, was forced to take a version of the Florida Comprehensive Assessment Test over the space of two weeks last year because the state of Florida required that every student take one. His mom has to prove that Ethan, now in a morphine coma, is in no condition to take another test this year.

Ethan wasn’t the only brain-damaged child in Florida to be forced to take a standardized test; I have written in the past about Michael, another Florida boy who was born with only a brain stem — not a brain — and can’t tell the difference between an apple and an orange, but was also forced to take a version of the FCAT last year. (See here, here and here.) There are many others in Florida and across the country as well.

Why does Florida — and other states, as well as the U.S. Department of Education — force kids with impaired cognitive ability to take standardized tests? Because, they say, nearly every child can learn something and be assessed in some fashion. Even, apparently, a boy born without a brain.

Publicity last year in Florida about some of these cases sparked interest among some state lawmakers to pass legislation to make it easier for severely disabled students to get waivers from taking these tests. The U.S. Department of Education sent a letter warning lawmakers to keep assessing all children, and one Florida Education Department spokesman told me that “waivers do not apply to students with a chronic situation.” Legislation did get passed but it wasn’t what some had hoped. It allows parents to request a waiver (Michael’s parents abandoned him shortly after he was born, and he lives in an Orlando care facility for children called the Russell House), and the state has set out a long series of actions that have to be taken — including approval by the education commission — to get a waiver.

Ethan got a waiver, but now there is a new obscenity transpiring. His mother sent an e-mail Tuesday to Orange County School Board member Rick Roach and to Scott Maxwell, who has movingly written about Ethan and similar cases for the Orlando Sentinel, that the state is requiring her to prove that her son still can’t take another standardized test and can therefore keep his waiver. The e-mail says: