Seeing the Wood for the Trees, Sometimes Literally

With medically very complicated children. sometimes it’s easy to miss the obvious. We’re so busy looking at their complexities we forget to see what’s right in front of us.

The dude is a classic example of this; age 2 he was diagnosed as being severely visually impaired, in other words he was blind. While this was devastating for us to learn, it meant we could immediately start working on how to help him communicate and interact with the world around him.

We rapidly learned that most people who are ‘blind’ can actually see to some degree. In our boy’s case he has what is referred to as cerebral visual impairment (CVI) - the eyes themselves are fine but his brain cannot make sense of what they're seeing. In the Dude’s case he has effectively got almost reversed tunnel vision. His central field of vision is pretty rubbish with his peripheral vision much clearer.

As he's got older, he's learned how to adapt to this limitation in his vision.

Like with any disability or limitation, humans (especially children) are remarkable at adapting - he's learned how to use his eyes more effectively, however over the past three years we’ve been told more and more often that he’s not engaging visually at school; he isn’t paying attention to the white board, or to videos as he used to. About 6 months ago, in sheer frustration, his dad asked whether anybody had actually considered whether our son needed glasses.. yes, he’s registered visually impaired, but if the vision he has isn’t as clear as it could be then wouldn’t that explain things?

I cannot tell you how many referrals this triggered as people realised just how many years it had been since anyone had actually looked at his eyes!

The short version is that Mr V was absolutely correct.

An eye test showed that out son is indeed short sighted, just like both of his parents, and needed glasses.

Considering our boy is nonverbal, struggles with controlling his movements and so traditional methods for assessing vision aren’t going to be appropriate it was awesome seeing the optician work so compassionately with him, moving her head in time with his so she could use various lenses, lights and eye drops to examine the eye itself, and to determine what correction his vision needed.

The Dude now has some very very fabulous blue framed glasses and he rocks them. As soon as they were placed on his face he was looking around the room, actively using his vision in a way we haven’t seen before. Yes, he is visually impaired. Yes, the vision he has is limited. And now, with his new glasses, that vision is as good as we can make it for him. Sometimes even with these high complex needs children, the simplest answer is the correct one.