I can’t believe we’re getting on the roller coaster again

So it’s been a while since we did a round of testing with Shiny. And the school is pushing for it, because they think she has vision and hearing deficits (duh) and want to qualify her for services on that basis. So I agreed to an audiology exam…. which was pretty useless, so they set us up for another one, which was marginally less useless, and now the audiologist is pushing hard to put Shiny under to do a sedated ABR to get better data.

I said no. What I really should have said is, “Over my dead body will you put this child under general just so you can get a slightly more accurate sense of how mild her hearing loss really is because you aren’t creative enough to get results with her awake. Fuck no, do not ask me again.”

And we went to the eye doctor and the sign language specialist wants Shiny seen at the Casey Eye Institute… which I agreed to right up until I learned it was part of OHSU. The staff was nice and pleasant and listened to me while I sobbed on the phone when they called (even seeing the caller ID was triggering) and talked about what they’d do in order to make it better… and then blithely mentioned the visit would last three hours. THREE HOURS. Three hours. Like they’re going to get anything at all useful after the first 20 minutes.

And it’s OHSU. They made noises about how they were separate from Doernbecher’s children’s hospital, which is where the worst stuff happened, but they are still solidly OHSU. I just don’t think I can. Like, I do not think I can physically make myself get into a car and go up there and walk in the building that I think shares a wall with the children’s hospital and not be losing my shit everywhere all the time. How can this possibly end well, no matter how good they are? And no one has told me how they could possibly improve things over what we’ve already done? Are they magically going to make her keep her glasses on? Wave a magic wand and give her better than 20/200 vision?

She is severely farsighted with astigmatism and she has had strabismus in the past but her eyes don’t seem to wander now. Honestly I think the right answer would be laser surgery but they won’t do it because of her age. And I think they’re wrong. I think if we wait until her vision is “stable” her brain will never adjust and a huge learning window will be lost.

If she’d wear glasses, it would be one thing, but the doc refuses to prescribe glasses that fully correct her vision, because of the distortion level, and I think that absent full correction she’s never going to want to bother.

Websites say, “Do whatever it takes to keep the glasses on”. We tried. It failed. Seriously we could put her in a straitjacket and she would just bang her head on the table until the glasses broke, she hates wearing them that much. I want to grab the doctors by the ear and drag them home and say, “You make it happen. I can’t.”

 

Posted in Health, Shiny, Special Needs.

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