A healthcare experience

I want to share an experience here.

I won’t talk about the absolute frustration of Teddy’s latest hospital stay, because that falls into the realm of things I somewhat expect, though am always disappointed when they happen. (But we’re not going to do an admission at Blank again unless it’s something regular-kid that doesn’t impact his kidney.)

I won’t talk about having to explain to doctors that no, the child doesn’t have a port for his subcutaneous infusion, which should be obvious simply from the word subcutaneous.

I’m going to talk about his eye exam.

Last year was the first year Teddy could do letters at his eye exam. We’d been working hard on letters, he had had a good day, it was amazing.

Yesterday was not amazing. He’s sick (uti). He’s just gotten out of the hospital a few days ago. He hasn’t done school in a week. He’s totally lost confidence in letters over the last several months and I’m not sure why. And he was uncomfortable to start with, because after every hospital stay we go through this thing where medical places make him uncomfortable.

He was doing his coping stuff – throat clearing. Coughing (yeah, that’s a fun one with all the people with perfectly normal immune systems all hyper about covid). Itchy nose. Itchy eyes. Fidgeting. Unable to look in a single direction. Asking what time it is over and over. He was just really uncomfortable. But he was trying. But he could NOT say the names of the letters. And so he said “I don’t know,” and then we couldn’t tell if he couldn’t see or if he didn’t want to say. So I asked “can you see it ok and you aren’t sure what it’s called, or you can’t see it?” “I don’t know.” (“I don’t know” is Teddy’s typical answer to any question, though he’s been getting better about this lately – his therapist came out 2 weeks ago overjoyed because he’d actually answered a question and she’d never experienced that before, lol.)

So I asked the lady (not the eye doctor, but like the vision equivalent to a dental hygenist, whatever you call that person) if we could do shapes. She looked at his file and said “no, last time we did letters.”

Um. What?

I mean, I realize that we did letters last time, but this is not last time. I want him to have glasses that are the right prescription, not be stuck with crap glasses that aren’t right because you decided he could do something that his brain has decided he cannot do today. There was absolutely zero chance that if she kept saying “what’s this letter, what’s this letter, what’s this letter,” he was suddenly going to be able to do it. ZERO CHANCE. Know what might have worked? Going with shapes, letting him do a few of those, then throwing the letters back up. That might have worked.

I was getting ready to say all of that out loud when she heaved a big sigh and said she’d “let the doctor deal with it.”

The doctor was actually amazing. She tried twice with letters, and I asked him again “can you see it ok but you just can’t remember what it’s called?” And he ANSWERED! And said yes. And the doctor said “oh, ok!” and pulled out a sheet of paper with the alphabet on it, and just had him point to the letter that matched what he saw on the screen.

See? That was so easy.

(And then she did the holding the lenses up to his eyes and looking with her flashlight thing which somehow magically gets her to the right rx for him without really needing his involvement, because frankly that’s probably the best option anyway.)

But why couldn’t the dental hygenist of the vision world lady do that? Why have to make everyone feel bad? I try SO HARD to not make Teddy feel bad about this stuff. He’s honestly trying to the best of his ability. It’s ok. Some days, he can’t remember how to write letters to save his life. I don’t know why. I don’t know if the information runs away, or if his brain can’t get the message to his hands. I just don’t know. But if it’s not happening, it’s not happening.

And, frankly, I also try not to make MYSELF feel bad about this stuff. I don’t care that he can’t do things like peers. Honestly, it’s fine. But yes, it still hurts a little to do things like explain to strangers that no, my almost 10 year old can’t seem to remember what K is called and it sucks but guess what, honey? You being stubborn about it isn’t going to make his brain and mouth work together to give you an answer. TRUST ME, I’ve tried that before.

And yeah, the lady didn’t know about the no school and the hospital and the absolute ravaging his body took from the pseudomonas and the fact that his kidney’s been knocked down a bit this time, and he might not be functioning at his best – but she shouldn’t HAVE to know all that to be able to see what’s right in front of her face – a child with special needs who was struggling to do as asked, and who WANTED to cooperate but couldn’t do what we were asking.

I don’t need people to change things around to suit him. We make it work. If lights are too bright, he sticks his head in his shirt or jacket. If there’s too many people, we let someone know we’ll be in the hall. If it’s too noisy, same. We do all that. I don’t need people to invent a new way of doing eye exams for him. But I do expect people to be kind and to use the tools they have at hand to work with us. And I expect professionals to recognize that I am the expert on my kid.