IEP Torture

We had reasons for homeschooling from the beginning, reasons that had nothing to do with disabilities, especially since we had no reason to expect any disabled children. (Remember how the doctors told us Brian’s blindness was not genetic?) We had reasons like my experience being the smart one, the geek, the outcast, the loner, the one who was picked on.  We had reasons like Brian’s experiences with exclusion and bullying and how he resolved them (with violence, not recommended).

What I hear from other parents of autistic and blind children and their dealings with the government school system just makes me more determined to keep my children home, no matter the cost.

I have had a touch of dealing with the government schools and the IEP process myself.  When we first started suspecting that Caitlin was on the spectrum, we approached the local school district for an evaluation, wondering if some kind of therapy would be beneficial to her and help her bridge that social-interaction gap.  We were told that she was on grade level for all her academic accomplishments, and therefore she didn’t, and never would, qualify for any services no matter what her disabilities were.  Later, when she was in third grade, we put the triplets and Liam into school for about six months to see if it made my life any easier.  At that point Caitlin had her official Asperger’s diagnosis, and again I approached the school requesting services to help her with her social and interpersonal skills, to help her integrate and belong.  I was told she didn’t need any help, but that they would keep an eye on her and let me know if she did.

As much as ten years later, I am still finding out from Caitlin about the things that happened to her that I was never told about, despite my explicit requests for an IEP and services.  The times she was actually pulled out by the special ed teacher along with the deaf and developmentally-delayed children.  The times she was excluded from recess, the bullying she put up with.  None of this was ever communicated to me by the school or her teachers, who apparently thought it was okay to change their stance and suddenly provide some kind of services without consulting me first.  I may never know what all happened to her, what all they did to or for her, because she really was unable to tell me about it at the time.

The next time I dealt with IEPs and government school services was when I found out I had blind children, especially with Kender.  I found out that all the teachers for the visually impaired (TVIs) and orientation and mobility (O&M) teachers had non-compete clauses in their contracts forbidding them to do private work.  Beyond that, they were so overloaded and overworked that most of them couldn’t have taken on private students even if they had wanted to, and the schools were laying off and buying out more teachers every year.  When we sat down to do IEPs for Jarod and Kender every six months, the process was excruciating, requiring all sorts of detailed evaluations. Kender had to be marked off on developmental skills checklists that were completely inappropriate for a blind child (recognizes faces? knows his colors? follows along with picture books?).  As Kender got older and it became obvious (should have been from the beginning) that we were going to insist on homeschooling him even though he was blind, the teachers stopped really trying to provide services and instead spent all their time trying to tell me all the reasons he should be in school.

I hear so many awful stories.  IEPs that are routinely broken by the schools. Teachers who belittle and abuse their students.  Children with autism and sensory processing disorders who are restrained with force. Visually impaired children who are denied access to Braille instruction because the TVI doesn’t even know it anymore. Visually impaired children who are denied access to O&M instruction and how to use a white cane because the school doesn’t want to deal with it. Autistic children who are passed from grade to grade with no real instruction, then given a “certificate of completion” instead of a high school diploma before being abandoned to spotty adult mental health services.

What makes me so sad and furious is all the parents who believe that their only option is to work within this system that seems so determined to thwart them and abandon their children.  Parents who have been convinced that only the government and its specially-trained certified instructors are capable of teaching their special-needs children, even though the evidence shows they are often neither fully trained nor willing.  So many parents believe that teaching their normal, healthy, on-target children is a job that can only be accomplished by professionals.  It’s even worse among special-needs parents.  So they believe they have no choice but to stick with this system that is broken, and because they are a captive audience, the system has no incentive to improve services.  It’s a vicious cycle, resulting in a downward spiral of worse services and worse education, turning out more and more children who are incapable of functioning as independent adults, and neither side is willing to break out.

My only thought when I hear parents telling these IEP horrors stories is Why? Why do you stay with this system? Why don’t you just pull out? Why would you sacrifice your children to this game the government schools want you to play?  I don’t understand staying in.  I’m out, and I will stay out.  I won’t play that game.

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