Wednesday, May 12, 2010

The Good Fight.

Today will not go down in the history books as one of my best. It was frustrating, brought me to tears, made me feel useless, and knocked me on my ass. I felt like the public system let me down (which shouldn't surprise me at this point), and the private system disappointed me as well. Add to that I found out that Max's longest standing therapist is moving off his team (good for her, but crappy for us), and well, fuck it.

By 2pm I was ready to climb back into bed and call it a day. I called a friend to announce that I had nothing left to give today, and that I didn't think I could muster up the strength to go to the JK Open House tonight at the school Max is supposed to, but as it turns out will probably not go to this Fall. This friend wisely commented that I would "do what's right", whatever I decided that was. So of course I went, because if Max does end up at this school, it's important that I go to these things, even if I'm feeling a bit bruised from today.

I wonder sometimes, how do other moms do this? How do they find the stamina to keep standing up for their children with special needs? How is it that they don't get beat down by the constant stream of people who tell you out one side of their mouth that they care and are here to help while out the other side they inform you that what you are asking has never been done before and they are unable to accommodate your child's needs, and this is somehow out of their hands and no they don't know who could help you change this? I consider myself to be a fairly strong, well-equipped person, and I can honestly say I am struggling to do my job in this fight.

And what is my job? My job, as I see it, is to get everyone who interacts with Max to believe in him as much as I do. To see his incredible potential and inspire them to be a part in helping him fulfill it. He will do great things in his life. He will be the person who figures out how to stop the oil from leaking into the Gulf, the person who designs Opera Houses with acoustics that would make Wagner weep, the person who designs a test to detect Autism in utero. He can be anything, all he needs is for people to get on board instead of standing in his way. For people with power to help find creative solutions instead of throwing up roadblocks. It's exhausting trying to get people to believe, to do "what's right".

Support Max, and support me by sponsoring us for the Walk For Autism on June 20th.

2 comments:

  1. Oh, Kat. Big hugs!! I honestly believe that you are one of the strongest people I know and that Max is the brightest spark in the world.

    I can't even imagine how frustrating it is to deal with all this crap. I am exhausted, depressed and overwhelmed just trying to deal with Charlotte's relatively minor challenges. I really believe that the public school system is designed to meet the needs of the middle-of-the-road, mediocre kids and that's it. Kids that are bright or have any sort of exceptionality are left out in the cold. I do believe part of it is lack of resources but there also seems to be a lack of compassion inherent in the general system. There are certainly compassionate individuals but the system is so deeply flawed.

    Whatever happens you'll be right there making sure it's the best thing possible for Max. How can anyone not see his potential after meeting you?!

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  2. What is your job? I'll tell you, nobody will ever believe in your child as much as you do.. nobody will ever see those little Autistic moments that are so cool, and define your son, like you do. Our society STINKS when it comes to our unique types of children. As long as you, you, you, believe in Max? And teach Max how to believe in himself? Than you have done your job, or at least that is how I see it. You can never change others, but you can be true to you, and your son. THAT will get you out of bed at 2pm, and give you the strength to carry on. Good luck...

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