Thursday, August 22, 2013

The Stuff of Legend

     Like any great culture or society, the autism community has its stories. The kind that are passed down from mother to mother, dramatic and full of conflict. The evil school district vs. the strong advocate parents. Complete with theatrical fight scene. Some jaded parents will sit like battle scared warriors and tell you their tales of services warfare and explain how the system failed them, failed their child when they needed them most. Others will tell of a hard battle, but proudly (and rightfully so) boast about finding a loophole or pushing hard enough to gain the help they needed and winning out in the end. Sadly, those stories don't seem to pop up nearly as often as the former.  

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    When we first had Xander, I dreaded the idea of somehow figuring out the school system thing. Where do they go, if you haven't lived in the area your whole life, that can be a tricky answer. When do we send them, private or public, what's best for them. The questions go on and on. But never did I expect to being looking at special needs classes, not until his diagnosis. That's when my worry and anxiety amped up and I got sick listening to the horror stories of IEP meetings and service delay cut offs. I feared  most that my son would fall into some infinite pit of a doughnut hole and we would never find our way out. I thought for a bit that perhaps they were inflated stories, like most folklore, embellished with time. I was wrong. It can be as bad as they say, and worse but it doesn't have to be. And in truly rare cases you don't have to fight at all, everyone is on the same page. (sounds like a fairytale doesn't it?)

     IEPs are scary, I wish I could say our first round in this battle wasn't. We had to learn quickly that we needed to stand up for him, more so that we had ever before. I worried we were pushing too hard for something he really didn't need and thought about taking the advice of other moms, to just be grateful for the services they were offering and send him on his way. But questioning my gut was wrong. The best advice I can give is to trust yourself. As autism parents, we are the only one with specialized PhD's in caring for our kids. No one knows them like we do. We need to go through life trusting ourselves and knowing that we truly do have our child's best interest at heart. When we know and trust our own educated feelings on what's best for our kids we shouldn't fear someone challenging us. Thanks to the laws in this country, we have the last say in their education. I'm not saying that just by fighting, you will win. There will always be people the system failed but I think fear can stop someone from fighting a battle they could have won, if only they tried.

    So whether you have sat through a dozen team meetings or still dreading your first, go in knowing that the memory of every autism parent before you is in your corner. We have all fought the good fight at one point in our parenting life and you have advocates in us. Don't back down and don't settle for less than what you feel is right for your kid.

   Good Luck!!

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