diagnoses, research, hope part 3.1

The afternoon and evening before our appointment with the Regional Center my sister-in-law, C., and I reviewed every piece of paper she had with regard to Q. and education.  It was not just a pile of paper, though, it was a mountain of struggles.  I had to be strong throughout because it was making C. cry to see how much trouble they have had with the school district throughout. 

I needed to go through each IEP from the time she was in early intervention with the Regional Center because I wanted to pinpoint when she was switched to the Special Education Day Class.  I needed to see when and how this so-called Specific Learning Disability was attached to my niece.  I wanted to know if there was an actual evaluation with diagnostic tests that could shed some light on the disability.  More than that, though, I wanted to see what services she received that were meant to meet that disability within the special day class.

By the middle, I was almost unable to continue reading.  I was so angry.  Many years, starting early on … the teachers barely bothered to change the date on the papers they were submitting.  Not only was she not progressing beyond the point which they had switched her to special ed, they were not trying to help her learn.  The goals barely changed from year to year.  The teachers switched whether she had met said goals from yes, no, maybe – I guess because that was supposed to indicate that they had observed or noticed something?? 

If you just took one piece of information and followed it from year to year, you could see that no one was paying attention at all.  For example, in kindergarten she was developing the ability to tie shoes.  In grade 2, she could tie them, though she was receiving occupational therapy to learn how to tie her shoes.  Oh, and she was wearing slip-ons because tying shoes was difficult for her.  This goes on and on throughout elementary school.  Are we supposed to believe that she learned and unlearned how to tie her shoes every year?

It was heartbreaking, frustrating and motivating all at the same time. While I tried to keep my own emotions in check, I also tried to think through how to answer the questions on the intake form for the re-evaluation.  After reading what teachers over the course of eleven years did not know about my niece, I needed to write something truly helpful for the re-evaluation team.  If we were going to make a case for autism, then we were going to have to show what you cannot see in a simple IQ test, particularly if it is a paper and pen test. 

I explained to C. that we needed to be brutally honest about mija's capabilities and deficits.  As a parent, I guess it is hard to be that truthful. When someone asks you how your daughter is doing, you want to say all the things she can do.  You want to paint the rosy picture.  But what we needed were the black clouds and the gray edges that tinged all of those rosy scenarios.  I showed her through the IEPs how her words had been twisted over and over to make it seem like she, not the professionals, were asking for specific services to stop. 

We took a long walk after reading everything and C. felt devastated and angry at the world. I can't say that I blame her – it is the guilt that hurts her the most.  In a perfect world, she could have relied on the professionals to have her daughter's best interests in the forefront as they made educational decisions.  Outside of that perfect world, parents have to advocate – and how do they acquire the professional information in order to do that against a room full of so-called educational professionals?  Yes, they give you a handbook every day, in two languages, that lists your rights and your child's rights.  But it does not tell you how to get the knowledge you need to understand what is happening in the IEP meeting.  

.... this is super long, will finish tomorrow...