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Ocular albinism & BLENNZ

Me and Miss2On Wednesday my wife and I found out that our youngest child (girl – nearly 3) has ocular albinism – a genetic eye condition where there is a reduced amount of pigment in the retina. Apparently my wife is a carrier of the condition, but she has no issues with her sight. It’s not new for our family however, as our eldest son (7) also has it and we have known he had vision difficulties since he was only a few weeks old.

So what does it mean for them? Well, for our son (who vision is worse than our daughter) it means that he has difficulty focusing on things. It takes quite a lot of effort for him to focus. Glasses help, but do not fully overcome the problem. At school he gets tired relatively quickly as a lot of his energy is going in to focusing on what he needs to see. He has no depth perception. A good indication of his vision is when his Mum was standing on one side of the road with someone else and he was on the photo (3)other side, he knew there were two people there but could not make out who was who.

Right from the time our son was 9 months old however, we have had the support of BLENNZ and their RTVs. BLENNZ is the Blind and Low Vision Education Network New Zealand – they are a school in their own right, but they have RTVs (Resource Teacher of Vision) who go and work with and support children with vision difficulties (not just ocular albinism) from before school age and right through school. They work with and support their teachers and help in getting any assistive technology that will support the children in their learning.

BLENNZ learning libraryOur son since being at school has had the use of a few different pieces of technology. Firstly he has a dome magnifier that he can move over a page that he’s reading and it will magnify the text for him. Yes – it’s a magnifying glass, but in the shape of a dome. One advantage of this is that he doesn’t have to get right above it to see. Secondly he had the use of a CCTV. You can read more about that in this article from the BLENNZ Learning Library in which he stars! The CCTV, I think, made a big impact on his learning. It certainly made it easier to keep up with others in his class. He is quite bright, but his vision slows him down. When he has the technology to assist him, he is able to keep up.

(Here is a video about the BLENNZ Learning Library if you are interested – well worth a watch)

This year his awesome RTV helped get him an iPad, along with a Bluetooth keyboard and a airprint enabled printer/scanner. Now he can have class reading books made available to him as ebooks in which he can enlarge the print as much as he needs to. He can have any worksheets scanned and emailed to his iPad. He can take photos of work on the board and enlarge it (he struggles to see the board). He can do his written work on the iPad without having to try to see the faint lines in an exercise book.

Not only do BLENNZ work in the classrooms, but they organise curriculum days where they can get together with other students of low vision and learn with them. Earlier this year my son and I went up to Auckland for a zoo trip with several other children – it was fantastic! BLENNZ support the parents also with tips and guidance on what will help the children. Yesterday his new RTV took him (and me) fishing to teach him some new skills! He caught 7 fish!

My wife and I are really grateful for the excellent work that BLENNZ do. They are making such a difference for our son, and we look forward to the awesome work continuing with our daughter.

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