I am starting this blog in the middle (or at the end?) of a long, needlessly dragged out process - but it's been suggested, so I'll try it. My challenge is consistency - I start blogs, but I don't stick with them. I have this site listed with Twitter, so I will try to stick with it. My daughter's IEP was "changed" (re-written for another school) three weeks ago - and she's still at the same school. Her services have not changed, just the school she's supposed to receive them at. She's supposed to go from a schedule of T/W/F mornings, to 5 mornings a week - consistent, simple, regular. Easy, right? The spot was held open for her at this other school. This SHOULD have been a simple process. Yet - three weeks later, I'm still fighting this stinking battle to get her moved to this school. I had to pick up the paperwork myself, fax it myself, e-mail people, call people, meet with people, visit ABA and Autistic Support classes, deal with a bunch of bureaucratic bs just to please and wipe the smiling butts of a bunch of academic know-it-alls who feel they know my daughter better than I do as her mother. I've come to the conclusion in this ridiculous sham of a process known as "early intervention" that they (the bureaucracy) count on parents being ill-informed and uneducated - not uneducated in book-smarts or degrees (I've got both), but uneducated in the labyrinthine early intervention process as it now exists. One mother called it a "secret society of school administrators and agencies" and I thought her conspiratorial tone was rather odd at the time - now I very much agree with her perspective on this. What they don't want parents to know - you DON'T know unless you've got connections on the inside. If you've got connections - then you may have a snowball's chance in hell of getting somewhere - but only if you're willing to do all the footwork required. Having connections gets your foot in the door and may get you in touch with someone who can help you or give you an answer sooner .... but it doesn't necessarily get the process moving any faster. In my case, it simply let me know what someone was waiting for - but I'm still waiting for my daughter's start date - and the Secret Society door is still shut tight. Personally, I would love to start my own advocacy organization to train parents and guardians (once I'm done learning all the ropes myself), so that parents and guardians don't have to go through the Crash Course that I'm going through. Or maybe I'll just write a Parent's Manual on dealing with the bs without getting killed by it in the process. I told a friend recently that it leaves you feeling like you're a cross between "I am Sam" and "Iron Man" - you could be an MIT graduate and still feel mentally challenged when dealing with these people, the way they talk down to you and act like THEY are the experts on your child. At the moment I have a situation of conflicting diagnoses for my child between a psychologist and a developmental pediatrician, each basing their findings on two different approaches (one involving, of all things, a questionnaire based on an antiquated and categorized view of autism) - but at least they do both agree that my child DOES need more intensive speech therapy than what she is now receiving --Which she CANNOT receive at this time because she IS NOT yet placed at the school that her IEP was written for three weeks ago because of some unknown holdup that no one is telling me about, despite all the paperwork I have faxed and run errands for like a madwoman, e-mailed, phone-called, messaged, hounded, stomp-danced, smoke-signaled, stormed Heaven's Gates with rosaries .... if there is something I'm missing, I don't know what the hell it is.And so -- I am a Mom On Fire!
