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?
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  1. Anonymous says:

    That child to too cute for words!

    Don’t let that mean-spirited woman get you down. You know your child better than ANYBODY including doctors, specialists, etc. And you’re incredibly intelligent. Trust your instincts, not someone who seems him only once a month.

    BTW many kids rub their eyes, particularly if they’re sleepy or guess what perhaps he has allergies. There are several reasons other than vision impairment that may cause him to rub his eyes.

    Keep your chin up!

  2. Shannon says:

    You do know him better than ANYBODY. Trust your instincts and listen to the therapists. Make your own opinions. Always seek out the best help and get the best answers. If you need second/third/fourth opinions, don’t be afraid to get them.

  3. Barbara says:

    First of all, that kid is too freakin cute! That beautiful face combined with those chubby (meant in the best way) arms and legs are too much.

    That therapist sounds like a complete idiot and I give you a lot of credit for not throwing her out of your home. Not only did she not make sense but she didn’t seem to offer anything helpful – which is what she is supposed to do.It’s sad that this woman is in the position she is.

    Remember – you know your child best and if you’ve noticed improvement in his vision then it has.

    Sorry you had a tough day. Hang in there!

  4. That’s too bad that she’s the only one. It sounds like she’s let her job turn her cynical and mean. Or she’s always been that way and now enjoys passing her gloom on to others. Charlie is a marvelous boy, don’t let her pessimism get you down. Take whatever good you can from the sessions and let the rest roll right past you!

  5. Goodness girl… I’m sorry you had a bad appointment with her. And, it totally sucks you can’t get a “second” opinion so to speak. Try not to let it bother you… I know that’s easier said than done! :) He is SUPER adorable!

    Big Hugs to you!

  6. That is a super cute picture and I have to admit that it does look as if he is a little more alert than he has been in past pictures.

    I will re-iterate what the others said about you knowing your child better than anyone else. I had the same thing happen to me with some kittens and a cat. I kept getting told there was nothing wrong but I could feel that something was off. Eventually the vet figured out that indeed… something was wrong. I assume that one’s intuition is much strong when it is your own child that you are talking about so listen to it.

    By chance is there some book that will give pointers and tips that you can use to supplement Ms. Unhelpful’s therapy.

  7. therextras says:

    Charlie is very, very cute! I liked Billie’s suggestion about doing more research, but clearly you have learned a great deal about anything you’ve been told about Charlie. I agree with all the previous comments regarding trusting yourself.

    I want to compliment you on your post – for telling so clearly how a so-called professional performs poorly.

    If you choose to continue to allow her into your home, you can begin to give her the message that you are in charge at next visit. Pick one thing and keep taking her back to it, like feeding. Have him set up to eat/feed. “What are your suggestions for helping him ‘see’ his food, understand ‘plate’?”

    And I like the sitting position he is in. Barbara

  8. Small Town Girl says:

    I LOVE that picture.

    I can only imagine how hard those type of sessions are. I think it’s good, though, that you aren’t ready to just lie down and let her tell you that his eye rubbing is vision related. You know your child best and you are the one that knows the family history. She sounds like a Negative Nellie to me!

  9. Elizabeth says:

    “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.”

    I admire your incredible restraint. Would it do any good to convey to her your frustration with the session?

  10. Sucks you have to deal with the stupid lady. You’d think that people who go into a field like that would have the personality needed to be friendly and helpful to everyone.

  11. Anonymous says:

    Charlie is one of the cutest children I’ve seen in ages.

    Now I’m at a loss for what to say. I agree with the majority of the comments. Dealing with incompetence is many times the most difficult part of dealing with disabilities. You have remarkable restraint and even though you’re feeling down and now I know that you will bounce back as you always have.

    I’ll keep you in my thoughts.
    Billy Paul

  12. What a sweet picture. Charlie is too cute for words!

    We’ve had our moments with incompetent therapists also. I’ve learned to stand up for Emmaline when necessary and bite my tongue when people are just ignorant. You know Charlie better than anyone, so continue to trust yourself to make the best decisions for him. The “experts” aren’t always the experts.

  13. Charlie does have gunky stuff in his eyes. I know because I dug it out when we were there! Ooooo! I want to get her! And, he is not going to lose his eyes. He is not poking them that bad. I think that lady is crazy! I was there for 3 days, and his eyeballs were definately not about to come out of his head. Even Abbie says he cannot get his eyes out of his head. She thought that was crazy. He is great. He looked at me and LB alot. Hang in there, and I’ve got your back if you need it. Give me about 8 hours notice.

  14. Christine says:

    Ignore the lady. You know your child. You know your child’s family, and on top of that, YOU are an educational specialist. Do not sell yourself short. Shemay be the only “vision specialist” in the state, but she sounds very short sighted to me. Why not ask your OT how he/she would work with a vision impaired child in teaching self feeding? That is an area that is within their specialty, and they are more likely to give you good ideas to try than doom and gloom about Charlie’s vision.

    Derive your strength from Christ and be blessed!

  15. You are Charlie’s best advocate. Lay some ground rules with this lady. Think of dealing with her like dealing with your former students. Work on the “behavior” issues now, so that you can move beyond them.

    Tell her what you EXPECT from each session. Some ideas:

    1. What are her concerns – related to vision – and why (because you said it, there can be more than one reason for his actions?)

    2. What can I do therapy wise to help him overcome his vision issues?

    3. Tell her, you are not here to offer “parenting” advice.

    4. Tell her, please do not suck the joy out of Charlie’s accomplishments, small steps are better than no steps.

    5. Tell her that you would like her to stick to the question asked (how to teach self-feeding) and explain that his other issues shouldn’t be related to her answer. You are pefectly capable of adapting any ideas she has to work for Charlie.

    You are doing a great job, and Charlie has come a long way!