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.  

free printables via

    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!!

Thursday, August 15, 2013

Clean One Room While He Destroys Another

at breakfast, on the last day of vacation
     In a little over two week, my little boy with be taking his first steps towards big kiddom; his first day of school. We were lucky enough to be able to fight the UI's suggestion of schooling and get into a much more appropriate private school. I'm hearing more and more that some are not so lucky and not amount of pushing, fighting and begging gets their kid the services they need. That just breaks my heart.

     Since his birthday, he's been dropped down to just TSS sessions. Speech and O/T will start up again at school and that will be great, he truly needs them on a daily basis.

    Our vacation and his new jersey birthday party were what I'd call complete successes but they had their moments of friend and family fun. We blessed to have a few good friends take time out of their busy schedules, drive hours in some cases, to spend the afternoon with us. The whole trip was riddled with meltdowns; adult and child alike. But we discovered a sad truth that before now really hadn't hit us; vacations aren't really stress relieving for an autism family. In trying to escape the ridge confines of our everyday, things fell apart for all of us and that was nothing if not stressful.

     But being back home has been good. We loved seeing family and spending more time with ones we haven't in the past, but damn does it feel good to be home. Xander is happily settling back into his routine. My husband cautiously pointed out that his screaming has decrease dramatically. We don't really know what's the cause of this, though Alex swears it started with going gluten-free and vacation didn't allow us to stick to that diet very well. So better behaviors with gluten?! I don't know, maybe. I've always said it had little effect on him in a positive way. But regardless, he's thrilled to be back to his toys and familiar rooms. He starts off every morning dumping out his toys and flapping, while I try to clean up the kitchen from the night before. (I'm usually too pooped to do anything more than watch netflix after bedtime.)

     All in all, its been a crazy last few weeks, and there's more crazy coming. School will be a big new adventure that I can't wait to see him experience. And maybe when he's there I'll actually get the house clean!

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