Archives for February 22, 2011

Priorities

Not even sure if I’ve mentioned this yet, but I was finally able to get Charlie into a private PT program that has a Lite Gait. I’ve been intrigued by the Lite Gait for over a year and when the spot opened up, I had to take it.

We’ve been working for a couple of weeks–starting slow with standing, kneeling, and even a spin on an adaptive trike.

boy sitting on adaptive tricycle

Seriously, what is this thing?

There’s a little boy who’s about seven and who also has cerebral palsy, that comes for occupational therapy at the same time we’re there for physical therapy. He’s engaging and sweet, he speaks clearly with all the therapists he meets. I was looking at him this afternoon rather closely as his therapist decided to work on trunk strength and I could see that his abilities strength-wise were nowhere near Charlie’s.

And when I went to my mother-in-law’s for dinner later, I was talking about the little boy. I marveled at how much he could do, but was especially amazed by his speech. I mean, he walks with a walker, but the ability to speak! Incredible. It wouldn’t matter if he were in a wheelchair–he can get his thoughts across.

boy crying in a walking contraption

Take away his iPad, and he'll thank you like this.

And so my wheels started spinning. Walking has never been a true goal of mine. Yes, I want Charlie to bear his weight on his legs to assist with picking him up, transfers, and so forth, but the other day when the doctor said for the first time, “Charlie might walk,” well, it wasn’t the moment you would expect. It was fine. I’ve made my peace with the chair and will A-Ok if it lives with us forever.

So why are we in walking practice? This ridiculous I know–we’ve just started!–but is that really where I want to put our energy? our time? our money?

Two weeks ago, the physiatrist handed us a fist-full of prescriptions–he pretty much told me to go after whatever I could. He expressed his belief that Charlie really needs to work on his communication. The next week I spoke to a local speech therapist who is familiar with the iPad and Proloquo to Go, but who said that working on augmentative communication with a child that young could be difficult. A few days later I asked the neurologist and she said he’s not too young and said the best place in the area is one that’s about an hour from my house.

I’m confused. I’m worried. Worried that I’ve lost focus of what I what our true goals on. Worried about changing gears and having it be a colossal waste of time. Worried that this is pre-baby panic. Worried that I could sign him up for this great speech program and then get side-lined by bed rest.

I’ve never been this unsure before. Never been so hesitant to take a step.

I keep waiting for a handbook with all the answers to show up and it’s still not here.

Pregnant woman standing with hand on hip

More people with whom I can mangle the art of parenting.

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