If you read my post Will I Break , you know how I am feeling. I want you to also know that I am not just ranting. I have called every resource I could locate, and a few of these contacts have yielded a great deal of knowledge.
What I recommend when in a situation like mine, don't stop telling your story, talk to everyone you can, search the Internet for resources, use websites like My Autism Team , AutismWeb, and search your local Autism support groups and resources. Two local groups in my area are SELPA and Matrix. Without these groups I would probably be lost.
In the days since I originally wrote "Will I Break" I have spent hours on the phone, on the Internet and reading. I have an amazing book I got from our local library "The Complete IEP Guide, How to Advocate for Your Special Needs Child". I also made a couple of connections through some phone calls, one in particular that has already pushed my child's district to make some positive moves in my sons direction. This person happened to know all the people I am dealing with in my child's district, as well he is very familiar with my child's condition. He was able to make a call on my behave and it seemed to help a little. My best piece of advise find this person in your area, there is always at least one, and it may take making dozens of phone calls but it will be worth it.
(this next paragraph is purely my opinion)
I believe this is a game (not a game I wanted to play) but a game none the less. My husband refers to this is Chess, since I have never played Chess, I am not sure of the similarities but I do know it feels like a game, the one with the best hand wins. I asked the school to provide what I know is needed for my child. They looked at their budget, then they make me jump through more hoops than a circus performer...hoping this will wear me out. I keep going. They bring in the "difficult person" the one that says "your child is doing fine, look there are so many more children that have it worse then your child, and all kids have difficulties with school at some point". I keep going, I push back saying, "I don't care what you think, my child is my concern and he needs help" their response: make me jump through more hoops, then wait, and wait (am I tired yet, will I break). Here is where they hope I will give up, give in. And when I don't, they offer me a carrot, but I want the whole salad bar. And the game continues...I begin to wonder, are they hoping the school year will end before we come to some conclusion? Here's the deal, I will keep fighting, I will keep fighting because this is my child! I think they forget we are talking about a child and not a line item, a budget number...
It shouldn't be this hard to advocate for your child's education, and for us it wasn't difficult until we moved to California. But I know it's not just California this is happening all over the country, not to everyone but to more people than it should.
Keep fighting, there are lots of free services out there for your child, and some low cost options as well, and if you are a parent with money a good lawyer will work too. Keep fighting!
I know we need to change this system, but before we think nation wide, for me it's about my child. Someday I hope to be in a position to advocate for all children, a position to help change a broken process.
I am in the beginning of this process, although I am years into it, there will be a lot to discover along the way, and hopefully new people that come into our lives and provide insight that would otherwise have gone unheard. I am open to reading your stories and suggestions. I am not an expert. Lifelong learning is my goal, and in the area of special education, IEP's I have a lot to learn.
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