Thursday, March 12, 2009

IEP Individual Education Plan

IEP'S Stink. I hate them. For laymen it stands for the title above. It is basically a required plan for a disabled child. You meet with several teachers, therapists, administrators and nurses and decide what they will include your child in, what they are expected to learn for their age range and so on.
I gotta tell ya, in all honestly, when you have a child with Rett Syndrome these are absolutely heartbreaking. These are the times when the fact that your child will always go to school for socialization and therapy hits you in the face. With a lead bat. Every time you have it in your head that people are starting to believe your child is in there, even though she can't walk on her own, cant talk or sign, they send you a letter and report reminding you of what you don't ever say.
Now while you are there or talking to them they are all rah rah and understanding. But it seems you will never be able to get them to believe she was ever a typical child who was snatched from you in the night.
Now I'm not saying that I am not over sensitive because everyone knows I'm a big bawl bag but when you go over pages and pages of we will try to get your 4 year old to crawl-even though she cant and you know it. We will put stuff in front of her to stare at.......yeah I'm a little upset.
I don't want to read severe delay in every description of my absolutely beautiful happy completely normal looking child. I know it. Send those pages to whoever needs the report. Do not send those pages to me. It honestly just makes me want to keep her at home where she is the star of the world.
Ok, so now something to look forward to.
Abby's former Speech Therapist came over this evening to talk to us about the Dynavox Eyemax:
It is a device where Abby would be able to communicate with us through eye gaze and is described as:
Say it with your eyes
The DynaVox EyeMax System is the newest, most advanced access method available to communicators who use the DynaVox Vmax. It is comprised of two parts: a DynaVox Vmax and a DynaVox EyeMax Accessory. The EyeMax System allows augmented communicators to access their Vmax with a simple blink, or by dwelling on a desired area of the screen.
It is amazing. It is also so expensive no one will tell me how much it costs. LOL.
So it is something we are going to talk about although I am so not ready to start another fight with the powers that be. I am so drained of it at the moment. Now if someone could assure me that they would so the testing, submission, get all the letters and fight all the appeals I would gladly jump on it in a second. This would so prove she is in there. She is.
So here is some pics of Abby with her former speech therapist. It was so great to see them together again and to see her with someone who believes in her.



The MacDonald Family said...

Oh, I just read about your IEP and I'm in tears. We had one last week and you captured everything that we just went through. Our cure is coming and when it does they will all believe that our girls were here the whole time, just trapped. Hugs! So glad you're checking out the Dynavox, we have a meeting about it in April!

Brooklyn and Kelly said...

Yes, when we find people who believe in our daughters we just want the mto never leave our lives that is for sure! I hope that Abby has plenty of people like that enter her world. UNtil then, we keep fighting and proving them wrong! The videos you are taking will change their minds eventually! In the mean time - I keep working hard everyday to raise money for research for that cure!!! I promise each day I think about all our girls and how much I want them back - NOTHING is more motivating!