Nystagmus.co.uk - Experiences at School

You will find other peoples' comments and experiences of being at school on the website's forum, in particular the specific category 'At School'.

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At school the most frequent difficulties arise when copying information and diagrams from black boards, white boards and from over head projectors. Therefore it is of utmost importance that the teacher allows the pupil to sit at the front of the class, as this will help him or her to see what is on the board and increase their chances of copying correctly.

If at all possible it helps if the pupil can be supplied with a h

ard copy of what they must copy so that they can place it appropriately to maximise their vision of it. If this cannot be done the teacher should write BIG, BOLD and CLEARLY on the board as it can be hard to decipher joined up writing that is small. People with Nystagmus often find it difficult to see various colours (see diagram to the right) so if you come into contact with someone who has Nystagmus try to avoid using these colours. However this does not apply to all colours (black and blue are easily seen by myself), so use these colours if at all possible.

It may sometimes be necessary for the teacher to read out what they have written, so it is a good idea to read out what you are writing anyway. In my opinion, the teacher should ask the pupil if they are having any troubles, because they may not want to tell them!

At school I was called names by many people until they either got tired of me not responding or until they understood Nystagmus. One of the most common phrases I heard was 'wibbly-wobbly eyes'. I just ignored them and eventually they went away. Lots of people also called me 'four eyes' but that is just as common as muck and most people that wore glasses were called this. Even now the occasional person calls me 'four eyes' but most of the people at school seem to have more sense now. As I told more and more people about my eye condition I gained supporters who would stick up for me if anyone else started to call me names. Therefore the names just gradually faded out. For example at middle school I had terrible trouble with people calling me names, and there was one person who supported me through this period (Lee). He even lost friends because of it. So thanks Lee. There is always an end, and I have never experienced a bad ending. If people call you names, just ignore them and do not try to be friends with them; it won't work. You will always find someone to be your friend!

I, and I assume most other people who have Nystagmus, find it hard to read consecutive capitals. So please try avoiding it if at all possible. For example...

THIS IS HARD FOR ME TO READ!

For my year 9 SATs I was given extra time, and I have been allowed extra time ever since. I am allowed to have 25% extra time in my exams, this will also be true for my GCSE exams over the next couple of years. This has been very useful as I read slower than normal because of Nystagmus. If you are worried about your exams I would go and see the Exam Officer or the Special Needs Co-ordinator at your school. For my AS exams i had to get a letter from my opticians to say that i take longer to read than most others, this meant that my school had evidence to support an application for extra time.

I find various elements of PE difficult as a result of Nystagmus. These are mostly activities that involve a ball. When a ball is

coming towards me it appears to move from side to side and as it gets closer it does not seem to move as far from side to side. So I attempt to judge the centre of it's path when I play any ball game where I have to hit the ball. This procedure works well for me as I seem to be able to gauge the centre of the balls path quite well. I say quite well, but I still find I am seriously disadvantaged in most sports.

I don't just find ball games hard but also athletics, such as running; I often find it difficult to stay within my lane because the lines of the lane appear to be moving.

I also find it very challenging climbing apparatus because when I take a foot or hand off a bar, the bar I go to put it on is moving, so I have to guess where it actually is. When this does happen it can become scary and make me even more nervous causing my eyes to move even faster.

My balance also seems to be affected as I find it immensely hard to walk along a beam without falling off.

I have played squash at school during most of my PE lessons and have enjoyed it when playing with my colleagues who understand my circumstances. Although I enjoy it, I am still not very good at it. I think I enjoy it more than most other sports because I do not have to play with many others, who do not understand why I find it difficult to participate in games.

People with Nystagmus are often fairly slow readers, but they can still read. However they may become tired more easily than most, depending on the size of the writing.

I can read the smallest writing in the box above but it takes me about twice as long to read it than the biggest writing in the box above. Although I am slightly slower than everyone else I manage.

I have to hold a book very close to my eyes when reading as it is more comfortable and makes it easier for me to read. Everyone with Nystagmus has a point where their eyes stop moving. You can discover this point by holding out your index finger at arms length, and gradually move it closer to you while continually concentrating on it. Make sure someone is watching, they can tell you when your eyes stop moving. It is at this point that things become in focus, and this is where I hold a book when reading. I cannot focus when my eyes are moving constantly.

It is almost impossible to share a book or worksheet with another pupil because it will most probably not be in a place where we both can see it, especially for the pupil that suffers from Nystagmus. There shouldn't be too much trouble as long as the pupil can have access to a book or sheet for themselves, and of course the teacher understands.

I find it difficult to work on a computer with another pupil, because I need to sit close to the screen in order to read the text there and to operate it. Lots of people comment on how close I position myself to the monitor.

In a similar way at home I need to sit close to the television in order to see it clearly. My parents were told that they should let me sit close when I was still at an early age. I have a special chair in our lounge positioned close and to the side of the television, but not obscuring the screen from other viewers. I also now have a television in my bedroom for convenience.

When I was 10 I wrote a short speech which I read to the rest of my class at school because I had many, many people who were, shall I say curious about my eyes and they wanted to know why they moved like they did. They kept on bugging me and so I wrote this:

"As you have probably noticed my eyes move from side to side most of the time. This is because of a rare eye condition called Nystagmus, which means I am unable to control the muscles either side of my eyes. Unfortunately when my eyes are moving I do not see clearly, for example when I see a ball coming towards me, it is travelling in a zig-zag. So I find rounders and games like that, hard to play, and think I'll let the team down. I have had to give up my bike because I can't ride it in a straight line and it could become dangerous. I find climbing on the apparatus difficult too, because when I take my feet or hands off and am about to put my foot on a different bar, the bar moves, so it is hard to determine where to put my foot or hand. I need to sit close to the blackboard and the TV, to see them clearly. When I am reading I need to hold the book close to my eyes. My eyes do not move so much when I am concentrating on a near object. I can show you...

(At this stage I showed the class how my eyes will stop or slow. I did this by holding my index finger out and I gradually moved it closer to my eyes and as I concentrated on it and it got closer my eyes gradually slowed at a certain point!)

...It is often difficult living with Nystagmus. Especially when I am teased. I will always have Nystagmus because so far, doctors haven't discovered a cure."