Living with vision problems

Firstly, just to clarify, neither Becca or I have vision problems. MrJ6 does, however. He has ocular albinism. Basically this is a lack of pigment in the retina. This causes a nystagmus (involutary movement of the eyes) and reduced vision. He is very long-sighted and has needed to wear strong prescription glasses from about 18 months old.

Apart from his small size (unrelated) and the fact he wears glasses you probably wouldn’t notice a lot of difference with him. He runs around the house, narrowly missing doorways like all the rest of the kids. Get up and down the stairs okay. Jumps on the tramp; swings high on the swing.

All normal… But watch closely…

MrJ6 will sit right up in front of the TV in order to see it. And when I say right in front, I mean centimetres away (we’ve recently acquired a larger TV and are getting him to sit further back, but he still prefers to be close). We bought a large monitor for the computer (22”) and we still pull it up closer to him when he is using it. It comes closer and he uses about size 32 font when he is typing something so that he can see what he has done.

This is manageable stuff. He is good at moving around new and different places. He learns his environment and then can get around. The learning of the environment is very important to him as he has little or no depth perception. He has gained more confidence as he has got older but only a couple of years ago was very scared to go across bridges at a playground as he couldn’t tell how high he was.

At school he is doing well. He has had very supportive teachers and teacher aides. He also has support from a Vision Resource Teacher (VRT) and BLENNZ (Blind and Low Vision Education Network of New Zealand). He will have a VRT until he is 18. Through the VRT, BLENNZ and GSE (Group Special Ed) MrJ6 is very well supported with the technology he needs to cope at school. He has been given an excellent dome magnifier to help with his reading. He has a CCTV unit at school that he can put a book underneath and it will enlarge the text and change the colours/contrasts with. He can read well – just a little slower than some of his peers.

What breaks my heart a little though is doing certain things with him. A family outing to the zoo can be so difficult. He loves the zoo, but actually cannot see most things that others can. Looking for birds in the cages is hard. They are small and often the enclosures are so cluttered with trees, shrubs, bushes etc that he cannot tell the difference between one thing and the next. The animal really has to be right up the front of the enclosure and generally quite large before he can see it.

At one point he had glasses that were a little bit weak. When the script was changed and he put on his new glasses he saw a fly and it freaked him out. He had never actually seen a fly, fly! He was about 4 at this stage.

Why am I writing about this? I guess I am writing this to raise awareness. Even if someone is wearing glasses, it doesn’t mean they can see well. MrJ6 cannot make out who someone is standing on the other side of the road unless they speak to him. As parents we need to be aware of the limits of his vision and help him accordingly. Others need to be at least slightly aware so they can support him if needed. His peers always help him out if he needs it. His siblings do the same.

Lots of people wear glasses. But there are so many different issues with vision. Be aware of those around you and offer your support if it is needed.

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