Monday, December 20, 2010

Quarterly beating

When you have a child in a special education program, you create and track their individualized goals to an appropriately titled Individual Education Program. These are things that you want the child to learn in the coming school year. In Luke's case, his goals are to bring him closer to the development level of his peers - Luke will learn to play with blocks, Luke will follow two step instructions, Luke will learn to jump. In Will's case, his goals are structured more towards enabling his mobility, autonomy, and speech - using eye gaze, Will will participate in a reciprocal social game such as peek-a-boo.

The IEP is hard to develop in the first place because it requires you, the parent, to subject your child to a battery of developmental tests run by different types of specialists. When the crying is done and the testing complete, you listen to the areas in which your child needs additional development assistance and work with those specialists to create reachable goals for the year. And while completely necessary, it is painful. And as realistic as Nate and I are about Will and Luke's abilities, the IEP meetings are sad reminders of things we've been through, places we don't necessarily want to go back to, and how long the path forward really is.

On most days, I don't think about the IEP. I realize that it is a necessary way for educators in the field of special education to track a child's advances, and I don't pretend to have a better format. I just don't really like it, and I don't look forward to the quarterly IEP progress reports that we get in the place of report cards. Call me blind, call me ignorant, call me a dreamer. I call it survival.

Will's quarterly IEP review came today in his bag. Last quarter's review wasn't awful to read, and I was expecting the same type of report today because Will's daily teacher reports have been largely positive. And while there were some positive comments in the IEP...


"Will needs to improve his ability to self-regulate and respond appropriately to various sensory strategies designed to "calm" his system down in order to have a productive physical therapy session on days when he is having difficulties."

"Will continues to require hand over hand assistance for writing, this is largely due to his resistence to perform these tasks."

My fear is that if Will doesn't meet the goals that were set for him, then next year, his teachers will want to keep all the same goals that he didn't meet this year and not set any new ones that will push him. And the year after, and the year after... same goals. And then all of a sudden we're 5 years down the road, I'm still getting IEP reports about Will's inability to self-soothe when he gets upset during PT, and Will hasn't made any real progress.

Will is such a smart kid. The goals set were to try to enable him to shine, to develop, to manueuver his way out of the binds of his cerebral palsy one little step at a time. We, as his parents and educators, were tasked with figuring out the best way to enable his success.

I try to stay positive. I try to stay strong. But my first thought when reading these progress reports is to shrivel. Now, you know me... I don't shrivel. And I won't in this case. But sometimes the reality of this situation wears on me. Tomorrow I will be fine, and I will start to come up with ways that Will will beat the hell out of his IEP goals. But tonight... tonight I cry for my baby boy who is just tries so hard, beating so many odds with a smile of such true uncomplicated honest joy, and not knowing just how hard he's got to fight.

1 comment:

Ruma LIfe: Part One said...

"Perseverance is not a long race. It is many short races one after another." - W. Elliot

You will make it! Will, he is going to make it! Love y'all!