This was the first time he had ever conveyed to me just how he sees. It was a big moment for me. I didn't make out to him it was a big moment though, as I didn't want him to be put off telling me things, or be scared by my over enthusiasm.
What he described to me is called 'depth of perception', and is something I have been aware of from the early days of me researching nystagmus. I have always informed him about steps, tree roots sticking up, or holes and dips on pavements or roads, etc, as I knew he didn't 'see' them as they were, and could, and did at times, fall over them.
I did however take what he had told me as a sign that I could begin to ask him little questions about what he sees.
I asked him to tell me what he could see on my face. He pointed out all my features.
I then asked him to stand four metres away, and asked him the same question. He immediately answered with all my features, but I could tell he was just repeating them, as he knows where they are anyway. I asked him if he could actually see them, and he paused, looked, and said "no". He was a little bit confused by this question, but I explained to him that I know he remembers where my features are, but that's different from seeing them.
He moved closer, to three metres, then two metres away, and then by one metre he exclaimed, "yes, yes mummy, I can see your eyes and mouth now!"
I was slightly overwhelmed by what I'd just experienced, as it brought home just how close he needs to be to see details, but he was happy to comply with it all, and I didn't make it out to be a big deal.
I had had some inkling that he could decipher people's shape and clothing from further away, but didn't actually know if it was them or not until they got close enough.
An example of this was in the supermarket with a friend, with W sitting in the trolley seat (he still sits in the seat aged five as I like to keep him close in big supermarkets due to over zealous trolley and basket shoppers who barge through aisles, barely missing children's heads).
My friend went off to another aisle, and a minute later W started talking to someone who was a few metres away. I looked round, and saw it was a stranger, and said that that person wasn't my friend. W told me that they were wearing the same clothes though, and yes I admit she was in similar coloured clothing, and was a similar shape and height, but it wasn't her. I explained this to him, and he was puzzled. That was when I thought he was struggling with details from a relatively close proximity.
It was another incident that made me really think about all of this ; When the boy's dad came to visit, and I hadn't told them he was coming (in case he cancelled last minute and let them down), that I said to W, "open the door, I wonder who is there?". He did open it, and looked at the person standing in front of him. W looked him up and down and asked "who is it mummy?", and only then did his dad speak to say "hello", that W recognised his voice and yelled out, "daddy!!".
That made me really have to reconsider just how hard seeing is for W.
W is a confident boy now. He was painfully shy as a baby and toddler and would cling to me - I can't blame him, as the world is massive, and being so little, and not seeing too far away, it must be scary.
But, to people that meet him now, they can't believe he was ever a clingy, crying little boy that needed me to be there with him all the time (not that I minded, as I believe in 'attachment parenting' ideals (a lot of them, not all).
Something that W was afraid of was strange dogs walking in the park. Yes, we have two dogs ourselves, but he would scream when these strange dogs came up to his face. I understood why, and explained to the owners, that he wasn't scared of dogs per se, but he can't see them running towards him, and it's only at the last second that they appear in his view, and 'wham' they are there in front of him. That is quite scary if you think about it. And a 2 or 3 year old, right down at a dogs level, suddenly having a strange dog in his face - that's scary!
I would then always do a running commentary about the dogs roaming near us, and warn him if they were near, even calling the dog to me first, to allow W to see him/her first, be able to reach out to stroke them, and then know what the dog looks like. I still do this now.
He is so confident in familiar places. There have been occasions where his confidence has been dented, for example when keeping up with his friends when playing in the forest, he doesn't see little branches poking out, and he always smacks into them. He can't keep up with them completely either, but at this age I explain that it's not a race, and that he has a few friends that try to keep near to him to help him, when they remember (they are still only little so it's not expected that they either understand fully why he has difficulty keeping up with them, or remember to).
Due to his confidence, it makes people believe he can see far better, and further than he really can.
When I try to explain, I have been met with disbelief and sometimes even scepticism that I am a liar!
As he is only five, I know we still have a lot to learn, but he will be able to talk to me more about this, and educate me on his vision. We are lucky that we have a great team of eye specialists where we live, and one of them is a leading researcher in the area of nystagmus. We are part of his research study, and it is very reassuring to know that he understands all about nystagmus and wants to find ways to treat it and even cure it one day.
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