Thursday, June 12, 2008

Vision, or a Lack of It

The funny thing is that in my head I knew that today's post was going to be called "Vision." The improvement that I've seen in Charlie's vision over the last few months has really been remarkable. Even his therapists have begun to notice it. Yesterday, two different people exclaimed that he was looking them when we went shopping--that is so much better than everyone telling me he's sleepy.

I combed back through my pictures and thought about comments that people have made. In March, he started to look at faces. By April, I could usually get at least one picture of him looking at the camera. Now, right after his first birthday, I'm seeing more and more looking around, making eye contact during play, and even looking at me at smiling in the morning. This is so incredibly rewarding. I really mourned his lack of vision more than anything else. You can tell so much from a person's eyes and when that component is missing, it's hard. As a parent, I had days where I wondered if I was connecting with him at all.

So, anyway, today's post was going to be all about the improvements I've seen and how happy I am about it.

Then, The Vision Lady came.

First, we talked Braille again. Le Sigh. Then, she got out the light box. He kept looking at it and looking at her. He was acting very happy about all the neat colors she was showing him, and kept doing his more sign. I thought this was great. Her concern? She wasn't sure his pupils were dilating enough. Ugh. Pupils have been examined by a doctor and dilate fully.

Then, she got all gloom and doom because he's rubbing his eyes a lot. I KNOW that this is a common feature in children with low vision. I am AWARE. I also know that my husband and his father both have major eye-funk problems. My FIL has been to the doctor twice and has to buy special eye-cleaning pads. My husband probably spends five minutes a day cleaning up his eyes and they're still gunky funky. He looks like he has eczema of the eye lashes. So, add that to the fact that Charlie has really been into exploring facial features--fingers up your nose, down your throat, exploring ears, trying to feel your eyes--and I'm just not ready to assume that this is vision related. It COULD be vision related, but I think it's important not to blame everything he does on his disabilities--sometimes there's a simple explanation. I told her so and then she started talking all about how he could lose his eyes. It's not like I'm LETTING him do it, woman. I was very firm and said "no" when he was doing it and then she says, "children hear 'no' a lot--you need to be more clear." AAAARGGGHHH. Talk to me about vision since that is apparently your specialty, but for the love of pants DO NOT tell me how to parent.

Then she said that his eyes didn't look that gooky to her. It took all the strength I had not to kick her ass.

Not to mention the fact that I'm not even sure she likes kids who are multi-disabled. I asked her how you teach a child who has vision problems how to self-feed and the first thing she said was, "well, my daughter didn't' have tone issues." WTF is that supposed to mean? Charlie can sit in a high chair, he can hold a spoon, he can put a spoon in his mouth. I'm wondering how these kids figure out that there's a bowl with food in it. Why do we need to talk about his tone? I'll deal with getting him upright and you just help me. What the hell is a vision service provider for if not to help me with stuff like that?

Sooooooo. . I didn't kill her, but by the time she left I just wanted to lie down and sleep until the whole situation just went away.

I just hate that these therapy sessions leaves me drained and depressed. I don't come away with ideas to implement in my home; I don't feel inspired. I feel helpless and the whole thing seems completely hopeless.

I've asked and she is the ONLY vision specialist in southern Louisiana. She's also the vision specialist in the schools, so I can expect to see a lot more of her in the future. We have a visit to the eye doctor in two weeks to see if Charlie needs glasses. He was far-sighted the last time we were there, so that may be on the agenda.

So, in summary: Was happy; now pissed. I may have to call in sick for our July session just for my sanity's sake.
PS: How cute is this kid?