Since Emma was diagnosed in 1999, and Hayley in 2000, I estimate that we have had approximately 22 of these meetings. (I honestly think it is more, because when they were very young we met a couple times to have "addendum's" added to their plans - but that is still a meeting in my book.) At first I saved every single scrap of paper - advice from several sources told me to keep a thorough paper trail - until finally I had a drawer committed to all these IEP's, all the testing information, all the "Parent's Rights" guides, and all the notes taken during these meetings. In essence, I had created a fire trap.
It took me a little while, but I finally purged the drawer. What brought about the change of mind was not so much the fact that I was afraid of the tinder box in the buffet drawer, but that the information pretty much stayed the same. And to be completely honest, I knew if I needed to get information, the school would have the current stuff that I really needed. I am lucky if I can find their current IEP.
Except for two of these meetings, the IEP's for the girls go pretty smoothly. (Those two meetings are for another blog...) I know what to expect - like I said, the information stays the same. And after all of these meetings you would think that nothing would ever throw me. Yeah, I forget about this part every single time.
Every time we have one of these meetings, we are always asked the same question - What do you want for your child?
Immediately I get nervous and try to remember what I said last year. (The OCD part of my brain is sticking its tongue out at me as if to say, "Told you not to throw those papers away. Told you to file them neatly in pretty little files labeled by year!") It comes to me a little quicker each time - the same lame answer I always end up giving - "I want (Emma/Hayley) to be able to function in society." (Something very similar to that - I can't find their IEP's right now to check.) Neat and all encompassing - the perfect answer to the ultimate question.
Don't laugh, but at those first couple of meetings when they asked me that question, I really thought that if I didn't answer it right that they were going to label me a bad parent. I even started to ask what I had said the previous year. I was so afraid of doing something wrong. Still am...
But now, RIGHT NOW, I wish that I could answer that question - because I truly know what I want for my girls.
I want them to be able to brush their hair and teeth without me having to remind them.
I want them to be able to make change and tell time.
I want them to be able to walk somewhere and never worry that people are staring at them when their quirks begin to show.
I want them to show interest in things that their peers show interest in.
I want them to be able to live on their own.
I want them to be happy with who they are and what they have accomplished in this world.
I want them to be able to experience life without having someone watching over them.
I want them to fall in love.
I know that some of these things are unrealistic for an education plan. But that is what I want for them. Am I asking too much? Probably.
There is no "right" answer to that question. And if you were to ask me tomorrow I am sure some of those answers would change. When I answer that question what I am doing is really asking for reassurance. I say that I want them to be able to function, or fit-in with society, and the experts are going to give them goals that will make that happen. Because with all of these goals and modifications, my girls will be able to do all the things I listed above, right? That is what I am asking for within my own answer. Reassurance and comfort that everything will be okay.
That is what I want for my girls. And for me.
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