Tuesday, April 29, 2008


To expand on the notes from the previous post...

Q is needing something different for a bed. Or rather, I'm needing him to have something different for a bed. I have this old, lingering nonsense in my left arm, shoulder, back, neck, head which I've handily accumulated over the years as a result of a few car accidents. It's flaring up. Wah. Thus, I'm having trouble hefting the kiddo over the rail into his crib.

Since he can't yet get himself to a sitting position, the mattress is still in it's highest position. After discussion with the assistive tech guy, I have some ideas about how to proceed. He wouldn't qualify for a special needs twin bed, since the crib accommodates him just fine, it's just me that it's not working for. (Those beds are $5-7000, by the way.) So we need to figure something else out and we're on our way to that. I'm going to look at using a toddler rail so I wouldn't have to lift him up so high. If that doesn't work we'll go down the list until we find something that does.

Assistive/Augmentative Technology: The device in question allows Q to have toys plugged into it and to then turn them on himself with his switches (buttons). The buttons are different from what he has in that the "jelly bean" switches aren't recordable, are individual (as opposed to two on the same unit), and can be used with velcro as either head switches or be positioned for his hands. As I've mentioned before, his motor planning issues are the driving factor in trying to get anything to work for him. Some days his head works better, some days his hands. Sometimes he holds his head easily and can turn and nail those little buttons every time, sometimes he can turn his head but not reach the button because he just can't get his head up that high. Sometimes he needs the switches positioned out to the sides because he can't make his hands approach the midline -- they'll only move laterally, and sometimes they must be positioned individually, across from a hand because he needs to reach across the midline in order to make those hands work.

All the work with the little jeep ("boss car") and head switches is getting him ready for a motorized wheelchair -- which he'll have to prove he can drive before he can have one of his own. All the work with buttons, pictures on/in the buttons, voicing the toys or commands with the buttons, time in the computer lab with him showing choosing in games, hitting those switches to progress through animation or to show he's understanding color correlations (!), all these things are meant to prepare him to use a CheapTalk, or something like it. This too he has to show he can use and make progress with before he can have one. Ultimately, I'd love to think that he'll be requiring one of these lovely devices (another $7-10,000). For now, merely the prospect of the amount of time and sheer effort on his part to take him "just" to this level is daunting.

After I sat and waited about forty minutes while a nice man typed some stuff out this afternoon, it appears that we won't quite be twisting in the wind, resource-wise. Strange how dealing with certain entities can just suck the life out of a person. Maybe the exhaustion is more about hearing the sad, even desperate stories as one waits. By the time one is done, one finds oneself longing to get off the planet, already. If one had, say, superpowers and could fix some of that wretched poverty, loss, confusion, pain, then perhaps one wouldn't feel so powerless. You know?

I ran out of time today to call the pharmacy about the broken basket. Tomorrow is another day, with more coloring, math, reading, appointments, feeding, diapering, band-aids, snot, laundry, slurpy kisses, and phone calls to be made.

Q's still up, having a little spit-up. Off to find the tummy meds. That's it for today.


Carolyn said...

Oh, I do wish you lived closer. I'd love to have the whole caboodle of you over for an evening, or afternoon, or day, to sit and chat. (And let my children entertain your children. We've even got TWO wheelchairs they could zip around in - one outgrown, one not)

May the paperwork be smooth, the people on the other end of the phone be rational, and the medicines efficacious. Oh, and the drool all happy.

sleepy jeanne said...

Wow, so much to think about, and work towards, and plan for.

As I was trying to get to sleep last night (after a stressful afternoon and evening), my brain was making those little squeaking noises... and I thought of you.

Love on those punkins and have a lovely day :-)

Bird said...

Ok, maybe I don't get it, so forget this if I'm totally out of it. Could he sleep in a regular bed with the fit-in rails? We have one of those for Charlie. Is there something I'm missing?

Anyway, if you want to keep using the crib, I had some friends who took one of the rails off their daughter's crib and duct taped a safety gate across half, but not all. That allowed access, but she couldn't fall out at night. Added bonus: it was completely free.

Bird said...

I've been thinking about this, and like I said before, i'm not totally sure I got it, but maybe you could just do a nest on the floor with the mattress. We're think about doing that for Charlie now that he's outgrowing his co-sleeper.