If I had a dime for every piece of paperwork I have had to fill out for Truman, I might not be rich per se, but I'd have a shitload of dimes. Enough to get us all through the Le Petomane Thruway.
Frequently, I have to fill out pages upon pages of mind-numbing paperwork for him. Someone is always wanting to know what seems to be the very same information that I just filled out pages upon pages of paperwork for for someone else. And you can't let it be mind-numbing because you are basically charting the course for your child's life as you fill it out. You can't get sloppy and mark all Cs like you did on the achievement tests in school, cheat off your neighbor or just put your head down on your desk and give up. And the difference between an answer of "yes" or "no" might make all the difference in the world, but you don't know what that difference is. The shades of answers get so confusing that they have to have a key at the top of every page. The questions kind of sound like this: "Think about the answer and then mark the response that most accurately represents the behavior your child has exhibited in the last 30 days (except on weekends or holidays). My child has a difficult time expressing himself verbally but not emotionally during periods of stress that don't include when he is tired but do include when he is exasperated, at home only and not at school a. never b. sometimes rarely c. frequently periodically d. always during holidays or e. mostly. If you answered 'mostly' make sure to provide a complete handwritten page (on reverse) of very specific examples that occurred during your child's 14th and 17th month of life. Then move on to the essay questions of section L."
And pretty much all of them are that way. Or it least it seems like it. I always wonder who reads these. And why is no one sharing information (even within the same institution)? Because every time I talk to anyone, it's a guarantee that there will be a folder of these to fill out. I have to fill out a whole behavioral survey every time we see a doctor. I finished the above paperwork this week (approximately 5 hours' worth), and then promptly received an 8 page survey in the mail in anticipation of his every-few-months Vanderbilt appointment coming up.
The picture above is of this week's batch. It's for his upcoming re-evaluation and IEP annual meeting. Eight booklets, all asking pretty much the same questions, sometimes within the same booklet, in different words. I have filled all of these out before. Even though Truman was diagnosed through TRIAD two years ago (considered the "gold standard" of autism testing), and even though psychologists and psychiatrists have been bandying about the autism diagnosis since he was 3 years old and giving him temporary diagnoses in the meantime, and even though I have filled out enough paperwork to insulate the walls of our entire house, MNPS has its own standards of what autism is and is not. When I turned in the diagnosis to MNPS two years ago, they declined to add it to our IEP because it wasn't their own.
But I'm a little worried about public middle school and how it'll work for him, so I want to make sure all of our IEP ducks are in a row and that all of him is included in it. And to do that, it has been determined that EVEN THOUGH we have all of that great information about him, he has to be completely re-evaluated as if it's the first time ever, using MNPS's own criteria.
It's exhausting. It's like fraternity hazing minus the fun part of getting drunk and throwing up with your new-found friends. I'm lucky that I'm in the fortunate position to be able to spend hours filling this paperwork out and thinking about it and fighting the battles. I'd love to know how many kids are out there who have a parent who doesn't have that luxury and who don't get through the thruway.
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