Wednesday, March 24, 2010

How Disabled is Enough?

When Charlie was two months old, we began the process of enrolling him in Early Intervention. At that time we checked a box saying that we would be interested in what they call a OCDD waiver. Many states have a program like this and it exists in order to keep children who might otherwise be institutionalized at home.

We have an evaluation with the state at the beginning of May.

I wonder what help they would be able to provide us, if any. I really have no idea if this is even a good idea. Hubs is already resisting--he hates taking "charity" which I think is ridiculous. We pay taxes, so it's not charity--we use the library, we'll use public schools, why not this?

It's just weird. I mean, I just can't tell if Charlie even needs something like this. I feel like Charlie is such an in-between kid--he's not mild, he's not severe. He's distinctly moderate. Sometimes I don't know where exactly we fit in. I mean, even if I look at the GMFCS for cerebral palsy and he's straddling the line between II and III. We're misfits.

I feel this way in other situations too.

This weekend we were at an event for the families of specials needs children and adults. While we were there, I saw two other families with children that had cerebral palsy that were about Charlie's age. One family I already knew and we chatted for awhile and then we went off to test the adaptive trikes.

The girl I know and the other mother ended up talking up a storm--discussing their strollers, head control pillows, HBOT. I sidled over there, but the other mom didn't seem interested in talking to me. I think we didn't look disabled enough or something.

So it can be tough here in the middle.

I know it's tough on both sides too.

I guess I just feel whiny tonight.
Pictures of Charlie in the diaper box car--suprisingly fun.