Wednesday, January 12, 2011

Do you see what I see?

This summer, soon after our commitment to Wesley's adoption, my friend Lyndi traveled to Ukraine to complete her adoption of her son, Freddie, and visited Wesley at the orphanage.  The news she sent me back sent us for a bit of a ride... things we weren't expecting.

With international adoption you 'expect the unexpected' but still, it takes time to process it.  We were told that among other things, Wesley was blind.  In Lyndi's 5 minute visit with him she realized he could at least see a little, but had no idea what his vision loss really entailed. 

We've now been visiting with him since early November and I saw him once in September also.  I've had custody of him for over 3 weeks and been home almost 2.  We still don't have a very good grasp on what his vision is like. 

When I try to figure it out... he always proves me wrong.  In fact, I thought I had a pretty good grasp of things.  He saw WELL (or fairly well anyway) up to about 12" away from his face.  Going out 1-3 feet from his face he could still see some, but not details (such as whether I was holding food to feed him or just reaching for him).  Anything more than about 3 feet he seemed to only 'follow' moving objects and if a voice was associated with them then he would recognize that that fuzzy creature was in fact mom. 

That's what I thought.

But Monday I grabbed some dry cereal to eat in the car so I could take the kids to school and then go on to a host of other errands.  Wesley sits on the front bench in the middle seat in our van.  And wouldn't you know... he got ANGRY when I started munching on cereal!

Now, he IS about 3' away from the dashboard in that position (maybe even a little closer) but, I really didn't expect him to be able to tell that I was eating cereal!   Of course he'd already eaten breakfast, but that doesn't stop a former orphan from wanting everything that someone else has, especially if it's food :).  Ok, so he could have smelled it, could have heard it... could have used other senses to know that I had some cereal.  But what if... he SAW it?  How awesome would THAT be???

Waiting for our referral to opthalmology to go through so we can begin to solve the puzzle with his vision.


  1. I wonder if you have looked at CVI? Cortical (or Cerebral) Visual Impairment is quite common with CP, and it's truly fascinating! It does affect different children differently, and it can affect the same child differently on different days. The simplest explanation for it that I have is that the eyes themselves work ok, but the brain does not process what it sees.

    Two of my three have CVI and it affects them both differently. With one girl, she can see very clearly some days and others not at all. White light and daylight blind her, so she wears dimmed glasses. She also has tunnel vision (due to one of her epilepsy drugs) and is long-sighted. The glasses she wears ensure that what little she does see, she sees in focus. The tint ensures she can open her eyes to see it. And then we work on the CVI by doing vision training, practicing tracking a light, that sort of thing. We have gotten to know where she sees best (in her case, around 12-18 inches from her face and slightly up above her nose. Similar to newborn vision really).

    My eldest also had CVI and what it did for her was made it very hard for her to see unfamiliar objects. She could see a raisin or a chocolate chip on a brown table, but if she usually had a drink in a red cup, she would not recognise a cup if it were yellow. Fascinating! She would recognise familiar faces from a long way away, but did not appear to see people she didn't know at all - it was as if she had to learn everyone individually rather than starting from "this is a face."

    My youngest has no real visual problems (long-sighted entirely corrected by glasses) and I am now having to learn how to work with a child who is not visually impaired.

    I hope the professionals are helpful and can give you a good picture of what his vision is like.

  2. Do you know the origin of his CP? Sound suspiciously like a Cortical Impairment to me. CVI is very mysterious and very, well variable! There are days when Marissa seems to see nothing at all and days when she is "using" her vision that she appears to see everything.

  3. Oh that gives me goose bumps!! I will be praying for him!!

  4. Wesley reminds me of a little boy I know who has CP caused by Kernicterus... he can see things close up, and he can see things further away, but there is a blind spot, I don't know the measurements sorry, where he can't see... his eyes can focus after a certain distance away, and at a certain distance closer, but there is a spot in the middle where his eyes just can't focus. Perhaps Wesley could be similar?

  5. I agree with a former post. It sounds very much like Wesley could have cortical visual impairment. We thought my son had that as an infant. Sometimes it seemed like he could see and other times not so much. They explained it to me like is kind of like looking through a piece of swiss cheese...there are areas where a child can see quite well and other areas that they can't see at all or not well. It constantly had us guessing. I hope this makes sense. A good opthomologist will be a huge help.