Food For Thought

We had one of those crazy days today. First, we had vision therapy, which is a once-a-month deal. Then, the speech therapist called wondering if she could come by today instead of tomorrow since she was having some scheduling issues. I obliged since we didn’t have anything going on. He did super with the speech therapist. He’s learning to make the baby sign “more” and he kept using it when she played with bubbles. Truthfully, his “more” looks a lot like a left hook, but I’ll take it. We worked a little bit on “all done” as well. He’s still not making any babbling sounds, but he is making a lot more noise and the guh sound is happening pretty frequently. Also, he participates in reciprocal sound making–she makes a noise, he makes a noise–which is a good sign.

Vision therapy is a little more emotional for me. He did great, though. He attended to the therapist frequently, he showed interest in batting objects, he eye movements looked purposeful for the most part. I even broached the subject of Braille v. print, which is a tough one for me. At this point, I’ve decided that I’m going to present Charlie with both–we’ll let time tell us which one works better for him. We were getting to the end of the session when I remarked that people in stores and restaurants often think Charlie is sleepy. The thing is, when he’s introduced to a new place, he tends to close his eyes and take it in auditorily. Also, if you look at the picture from yesterday, he often lowers his eyes some. I don’t know if it’s a little light aversion or what, but he does it a lot. No matter what, he doesn’t ever have that wide-eyed, blank stare that most babies have. If he’s looking at something, it’s purposeful.

The vision therapist said that she’d given a talk on this very issue at a recent conference. In her opinion, the way you tell others about your child’s vision reflects how you feel about it. That, in turn, tells your child how to feel about it. Lie to strangers and you’re sending the message that there’s something shameful about it. Face it head on, and they’ll grow up knowing that it’s nothing to be embarrassed about. She recommended saying, “He’s blind, but he’s listening to everything you say.”

So, I’m agonizing a little bit. First, Charlie isn’t blind. He has confusing, hard-to-understand vision issues. Second, people aren’t asking me if he’s sleepy–they’re telling me. I used to just nod my head and keep doing my thing. Currently, I just tell people that he’s playing possum, which is partly true. Too much noise and excitement and he’ll shut those peepers pronto. His father was the exact same way as a baby. He does look around, though, and he’ll usually throw a quick glance at whomever is talking to him before returning to gnawing on his hand. Is an explanation really necessary at this point? Am I ashamed or am I just just uncertain myself?
So much to consider.
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Comments

  1. Nadine Hightower says:

    I’m tip toeing in….are we stil friends??

    I think I would tell people that Charlie has vision problems. Becuz he’s not blind. And that’s so blunt….and rude. You’re not rude. That way you state the facts and they aren’t “slapped” in the face for chit chatting.

    By the way….I’m so jealous of your tomato!

  2. Leucantha says:

    I think you are probably too worried about what people think. (I know I am all the time too, so don’t worry I think you are *gasp* normal.)

    I think being honest if it comes up is great, but sometimes a short “excuse” playing possum is great.

    While I don’t want to minimize, your feelings, please don’t feel bad about explaining your kid to anyone. It really doesn’t matter what the rest of the world thinks.

  3. I think it’s a mixture of being uncertain along with, it’s not so easy as to say “he’s blind” because he’s not, but you also don’t want to go into a five minute explanation of it. I think you could say “he has vision problems” and leave it at that. But depending who it is – you don’t have to say anything, it’s not being ashamed to not want to explain it to a stranger.

    And, I’m glad that I’m not the only one who loses stuff when I move! I’m still so friggin frustrated about that, and you know it’ll turn up like 2 years from now!

  4. Shannon says:

    I have a good friend going through similar issues. Her son just turned one and had severe cataracts at birth, so they had to remove them and his lenses. He can see, but just how much is unknown at this point.

    What do you tell people? I would probably lean towards saying he has low-vision or vision problems.

  5. If you feel the need to tell anyone about Charlie’s issues, then I agree w/ Nadine…Charlie has some vision issues, and the therapist’s suggestion–but he’s listening to everything you say.

    On the other hand, in our situation, which is very different I know, and yet similar in some respects, I feel people are on a “need to know” basis. Do they really NEED to know stuff about my kid? Maybe so, maybe no.

    Just use your best judgement in any given situation and don’t fret about it too much. Take things ONE THING AT THE TIME and on a case by case basis. Don’t overthink or overanalyze. It’s easy to let yourself get into that mode…I am very guilty myself of doing so. And then you just start driving yourself crazy, girl!

    And we can’t have that! 😉
    HUGS!
    OH, I LOVE these pics of Charlie. He is one awesome kiddo.

  6. Rural Felicity says:

    I’ve had people tickle G’s feet and tell me he is not fun because he’s not ticklish. He doesn’t have sensation in his feet. He also gets very flushed from his medication, and in the summer I get a lot of comments to keep him out of the sun.

    I don’t always explain it all. Sometimes I do. I think being upfront is the best way to go, but sometime’s I’m not up to the task and just let it go. I don’t think you have to explain every time, but don’t be stopped from explaining either, y’know?

  7. Dominick M. Maino, OD, MEd, FAAO, FCOVD-A says:

    As a professor of Pediatrics & Binocular Vision at the Illinois Eye Institute/Illinois College of Optometry, I’ve had several instances of examining children that were diagnosed “blind” when the were not blind. Many exhibited cortical visual impairment….most improved over time and with vision therapy.

    Have you had a visual evoked response/potential done? A VEP could tell you quite a bit about the strenght and the speed of the visual signal as it travels from the eye to the brain…this could help establish a diagnosis….and an appropriate treatment plan…

    For the latest research concerning childrens’ vision problems please go to http://www.MainosMemos.blogspot.com

    For information about vision therapy you might visit http://www.covd.org.

    Thanks…