I have purposely avoided talking about the content of what I'm about to discuss, other than mentioning it in passing the other day. The whole ordeal sucked and I wanted to keep it to myself until I read a post written by a CP mama friend about a recent assessment she had done on her boys and it made me decide to share our experience.
Last week, Asher was assessed for a government program that, if he's approved, would provide us funding for any medical equipment he needs. Currently on the plate are a seating system, orthotics, and a bath seat, and down the road we'd look at things like a walker and/or a wheelchair. (When you can't sit you need help to do pretty much EVERYTHING). Obviously the funding would be hugely beneficial (these things do not come cheap and Jordan's insurance only covers a portion), but to get approved you need to have a pretty significant disability. So you can imagine how fun it was to show off just how disabled Asher is.
Every therapist and doctor on Asher's team is full of positivity. Yes, we talk about what he can't do - obviously - that needs to be addressed in order to help him. But mostly, we focus on what he CAN do. The tiniest of milestones ("inchstones" in his case) are celebrated. Take for example the fact that he recently clasped his hands together (with assistance) - you'd think he'd walked on the moon! But for this assessment, we needed to make clear all of the things he is unable to do, and sadly, there are a lot of them. Watching someone assess your child's every move (or lack thereof) is heart wrenching. It's not that I forget that Asher has a disability, but I'm not used to it being on display.
I dreaded the assessment for weeks, so much in fact that I considered not even applying. There were many, many tears and a whole lot of discussions, but in the end we went through with it and I am glad we did. The assessor (a nurse) was lovely, and made it as painless for us as possible. Asher, of course, was a delight, so knowing that he wasn't bothered by the whole process also made it easier to handle. That said, I am starting to receive copies of the paperwork associated with his assessment, and seeing all of these "can'ts" on paper is pretty depressing.
So now we wait until mid December when the decision goes in front of a panel. If he gets approved, great, and if he doesn't we re-apply in a year's time. I am trying to tell myself it's out of my hands so what happens happens and we'll deal with the outcome either way. Ha! When's the last time I let that happen? Can we say NEVER?!