The Eyes Have It

Tuesday found us back at in the Ophthalmologist’s office. We go every six months, so this isn’t earth-shattering, but this time I got a bit of news.

After years of having no idea what sort of vision Charlie has, we seem to have reached a definitive diagnosis.

Officially, Charlie has optic nerve atrophy.

It’s a vague diagnosis that could mean many things. What it means definitely, is that there are areas of Charlie’s brain that have been damaged and as a result don’t process visual images.

What that means for Charlie is less certain. His eyes have become more and more functional and he uses them together more and more. He is able to find the sweet spot when he wants to forward a song on my iPhone and he’s getting a lot better at eye contact. We don’t know if he’s got overall blurry vision or if he’s got normal vision in some places and lesser vision in other places. I’m thinking it’s the latter, but either way, his doctor feels confident that it’s functional.body-part-blog-2

I should be relieved, but I’m left wondering again.

You see, I had really decided that all this vision stuff was just mumbo jumbo. Every third kid with cerebral palsy has some type of vision diagnosis and they’re all made with what appears to be little or no proof. I mean, how do they separate the physical disability from inability? Different kids will have similar symptoms and have wildly different diagnoses.

But here I am now, with a clear answer that makes sense to me. He’s not blind, he doesn’t have a voodoo diagnosis—I have something to work with. Now, I need to start making some accommodations that might make vision easier for Charlie.

I need to test large print books.

I need make sure I’m giving him high contrast learning materials.

I need to accept that my child’s vision is damaged and start helping him use what he has.

Time to get moving. 

body part blog

Pictures from our unit on faces. Also, looking at the camera, eyes perfectly aligned—wasn’t sure I’d ever see the day.

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Comments

  1. Candace says:

    Katy, you are such a good momma! MOTIVATE! YES!

  2. GingerB says:

    Indeed, you are an amazing Momma! I am always so impressed with your units – it just amazes me that you looked at your son and said OK, let's get some education going. Not therapy, not day care, you really plan your time with him to educate and motivate learning. I have learned a lot from your blog – I should put it into practice at my house!

  3. Katy — you probably know this (but just in case you don't) — you will probably want this information as a part of his IEP — under present level and/or parent concerns. Any poss ossible accomadtions and goals? Depending on the size of your school district, they might have a vision specialist who can help. Or a developmental ped could be helpful too.

  4. I love reading your updates! You are the person I wish that I was 20 years ago! Keep up the great work!

  5. Katy, I just read an article in Energy Times about a lady – Susan Barry whos eyes crossed when she was 3 months old and had 3 surgeries to correct her appearance she later found out that she had strabismus a misalignment of the eyes that confuses the brain and she could not see 3D vision. But later on in life when she saw a developmental optometrist who gave her exercises to do taught her eyes to work on unison with an aid like a Brock sting.
    At the age of 48 she finally was able to see in 3D Her eyes had remained the same but her brain had changed she had experienced neuroplasticity. She has written a book about it that might interest you "Fixing my gaze :A scientists Journey into seeing in three dimensions ( Basic Books )
    You go girl! get to work! nothing is impossible for our children if we just believe.

  6. I feel so happy for Charlie when I read your blog…he is one very lucky boy. And, yes, aligned eyes are a beautiful thing, surgery fixed ours but eyes are ever changing…

  7. "Confident that it is functional" best words ever.

    You're such a great, positive mommy, Katy. I love that about you. Can I be you when I grow up??

  8. TherExtras says:

    And what a great day to SEE! (His hair is beautiful in the photo, too!)

    You know I like functional!

    Happy with you – even if you do not know every single predictive fact just now (like every other parent knows for their 3 y/o, ahem).

    Barbara

  9. Ah, acceptance again. Does it ever end? I am so happy that Charlie has something to work with and that you will be his partner in it. He is a lucky boy!

  10. Wherever HE Leads We'll Go says:

    We have similar questions about Emily's eyes. We have not received a definitive diagnosis yet and I always wondered how the doc can tell what she can and cannot see.

    I am so glad that you were able to get a definitive answer. Charlie could not be in better hands. I have no doubt that you will do all that you can to help him make the most of the vision that he does have.

  11. So glad to hear that Charlie's vision is functional! I'm with you wondering over my child's vision; Elijah's vision confuses me. It seems to confuse a lot of people, so I guess I'm not alone. :) I have never heard of optic nerve atrophy. We have the vague diagnosis of cortical visual impairment (CVI). Which is kind of confusing, but it does help us to understand what he might be seeing and therefore make changes for him. That's what really matters, isn't it? Charlie has amazing eyes – love the pictures. :)

  12. Wahzat Gayle says:

    Congrats on being picked as a NOLA Momma :)

    He is such a cutie :0)