The world through wobbly eyes – a diary

When I was a baby a doctor told my mum I was blind.  I wasn’t blind, of course, but I did have nystagmus.  Now I’m ten and I’ve still got nystagmus.  This is how I see the world through wobbly eyes …

I’ve started going to Young Farmers and it’s brilliant.  It will be really good practice for when I am a vet.  We had to fill a medical form in and as usual we had to say that I’ve got nystagmus and that I’m registered partially sighted.  This threw the helpers into a bit of a panic.  We often seem to get this reaction from people.   They said perhaps Mum should go with me to the farm in case I have any problems.  But the whole point of going to Young Farmers is to do something on my own and be a bit independent.  I’d look a real baby, taking my mum with me.  I am ten years old, for goodness sake!

Extract of a diary first published in FOCUS magazine in June 2002.

Find out more about nystagmus from the Nystagmus Network.

The world through wobbly eyes – a diary

When I was a baby a doctor told my mum I was blind.  I wasn’t blind, of course, but I did have nystagmus.  Now I’m ten and I’ve still got nystagmus.  This is how I see the world through wobbly eyes …

We’re doing our SATs next week at school.  I hate tests.  We’ve been practising for ages and it’s getting really boring.  When we do the tests, I won’t be able to sit in the school hall with everyone else in my class, because I get fifteen minutes’ extra time.  I have to do my test in a classroom with the ‘slow learners’, because they get extra time, too.  The other problem with important tests is that I get the large print versions.  It’s great that I can see the large print and everything, but the questions come on such great big sheets of paper that I have to lean right over the desk to read them.  You can’t choose what size print you want and you can’t say that you’d like yellow paper, A4 size.  You have to make do with whatever the examiners send.  That’s supposed to be all right for everybody with sight problems.  Mum says I have to make sure I use my extra fifteen minutes to check my work carefully.  Sometimes I don’t bother.  I don’t want to miss playtime and my teacher is ready for her cup of coffee, but Mum says she won’t mind waiting for her coffee until I’ve finished the test.

Extract of a diary first published in FOCUS magazine in June 2002.

Find out more about nystagmus from the Nystagmus Network.

The world through wobbly eyes – a diary

When I was a baby a doctor told my mum I was blind.  I wasn’t blind, of course, but I did have nystagmus.  Now I’m ten and I’ve still got nystagmus.  This is how I see the world through wobbly eyes …

The last day of half term was much better.  We went to the cinema to see Monsters Inc.  It was really funny and we had loads of sweets.  We got to the cinema a bit late and Mum was worried that there wouldn’t be any seats left.  But when we got to the box office there were four seats left on the front row.  Imagine that!  Nobody else wanted to sit right at the front.  For me that’s the best place to sit.  I could see the screen really clearly and I didn’t have anybody’s big head in the way.  Brilliant!

Extract of a diary first published in FOCUS magazine in March 2002.

Find out more about nystagmus from the Nystagmus Network.

The world through wobbly eyes – a diary

When I was a baby a doctor told my mum I was blind.  I wasn’t blind, of course, but I did have nystagmus.  Now I’m ten and I’ve still got nystagmus.  This is how I see the world through wobbly eyes …

At half term my brother went go-karting.  He was so excited about it.  I went along to watch, but it was very boring and very cold., so I went and sat in the car.  On the way home he just wouldn’t shut up about it.  All he did was drive the stupid go-kart round and round the track hundreds of times.  Apparently one of the instructors told him he was a ‘natural’ driver and might turn out to be another Michael Schumacher one day.  Big deal!  I’ll probably never be able to drive a go-kart or a car, because of my nystagmus.

Extract of a diary first published in FOCUS magazine in March 2002.

Find out more about nystagmus from the Nystagmus Network.

The world through wobbly eyes – a diary

When I was a baby a doctor told my mum I was blind.  I wasn’t blind, of course, but I did have nystagmus.  Now I’m ten and I’ve still got nystagmus.  This is how I see the world through wobbly eyes …

I wish somebody would invent a pair of glasses that would cure nystagmus.  I’d get a really cool pair and wear them all the time.  I don’t wear glasses, because there isn’t anything wrong with my eyes apart from my nystagmus.  But it’s very difficult to explain to people that I can’t see very well.  My eyes don’t look any different from anybody else’s and sometimes people don’t even notice that they wobble.  They tell me I should get some glasses and then I would be able to see.  If only it was that simple.  It’s just the same with deaf people really.  Some of them can get a hearing aid to help them hear better, but it doesn’t work for everyone.

Extract of a diary first published in FOCUS magazine in March 2002.

Find out more about nystagmus from the Nystagmus Network.

The world through wobbly eyes – a diary

When I was a baby a doctor told my mum I was blind.  I wasn’t blind, of course, but I did have nystagmus.  Now I’m ten and I’ve still got nystagmus.  This is how I see the world through wobbly eyes …

Mum’s had some highlights put in her hair.  She says it’s so she will look glamorous for all the Christmas parties, but I think it’s so that we can’t tell that she’s going a bit grey!  My brother and my dad didn’t even notice that she’s had her hair done, but I did.  I might be partially sighted, but I am very observant.  I was in Mum’s good books for the rest of the day!

Extract of a diary first published in FOCUS magazine in December 2001.

Find out more about nystagmus from the Nystagmus Network.

The world through wobbly eyes – a diary

When I was a baby a doctor told my mum I was blind.  I wasn’t blind, of course, but I did have nystagmus.  Now I’m ten and I’ve still got nystagmus.  This is how I see the world through wobbly eyes …

We went to see the Harry Potter movie.  It was brilliant.  My brother has read all the books.  I haven’t read any of them yet, because the print is too small and it would take me ages.  But Mum has read ‘The Philosopher’s Stone’ to me.  They missed a lot of the book out of the film, but it was still really good.  I can’t wait for the next movie.  I like going to the cinema.  We go to the Odeon and they have those really shiny blue lights on the steps so that you don’t trip over in the dark.  I think they’re a really good idea.

Extract of a diary first published in FOCUS magazine in December 2001.

Find out more about nystagmus from the Nystagmus Network.

The world through wobbly eyes – a diary

When I was a baby a doctor told my mum I was blind.  I wasn’t blind, of course, but I did have nystagmus.  Now I’m ten and I’ve still got nystagmus.  This is how I see the world through wobbly eyes …

We had to take one of our cats to the vet, because she had been in a fight and got some wounds on her leg.  He took her temperature (t-e-m-p-e-r-a-t-u-r-e –  you see!  I can spell that now!  And v-e-t-e-r-i-n-a-r-y!).  But the work experience girl couldn’t read the thermometer.  I don’t think there was anything wrong with her eyes.  Mum said it was because she was wearing too much mascara!  I want to do my work experience at the vet’s when I’m old enough, but I shall make sure that I can read the t-h-e-r-m-o-m-e-t-e-r before I go and I definitely won’t wear all that yucky mascara!

Extract of a diary first published in FOCUS magazine in December 2001.

Find out more about nystagmus from the Nystagmus Network.

The world through wobbly eyes – a diary

When I was a baby a doctor told my mum I was blind.  I wasn’t blind, of course, but I did have nystagmus.  Now I’m ten and I’ve still got nystagmus.  This is how I see the world through wobbly eyes …

I’ve joined the Youth Theatre.  I love drama and this is a brilliant group, because we actually get to have our lessons on the stage.  Mike and Anna are our teachers.  The first time I went, Mum had to fill in some forms.  That’s called enrolling.  She asked me if I wanted her to explain about my sight problems.  I said ‘no’ as I prefer to tell them when it comes up.  So far, I’ve been able to see everything OK.  We had some scripts to work from, but Mike had printed them really big so we could share them.  I could see them OK.  I’ll just tell them if there is ever anything I can’t see.

Extract of a diary first published in FOCUS magazine in December 2001.

Find out more about nystagmus from the Nystagmus Network.

The world through wobbly eyes – a diary

When I was a baby a doctor told my mum I was blind.  I wasn’t blind, of course, but I did have nystagmus.  Now I’m ten and I’ve still got nystagmus.  This is how I see the world through wobbly eyes …

I can spell!!!  Hooray!!! I used to have such terrible problems with spelling.  We get spellings to learn every week for a test at school.  We use the ‘look, say, cover, write, check’ way of learning them.  I don’t really like this method, because I’m not very good at copying, but all the teachers at my school use it.  I could just about remember the spellings for the test, but the next day I had completely forgotten them again.  It was very annoying.  When I write stories my spelling is really bad, too.  I’m supposed to check through my work when I’m finished before I hand it in, but it’s such hard work, because I’ve forgotten what I’ve written by then and I can’t read my writing anyway!  But just before Half Term Nicole came to see me.  Nicole is an Educational Psychologist.  Mr Parker, our Head Teacher, asked Nicole to come to see me so that she could tell the teachers how to help me with my work.  She gave me lots of exercises to do and asked me lots of questions and then she discovered that I learn by listening, not by looking.  So now I learn my spellings out loud.  It’s brilliant fun, because you can learn them while you’re going round Sainsbury’s or in the car with your mum.  We just say all the letters of the word out loud and try to make up a pattern.  I’ve learnt some quite big words this way, like astronomy and aquarium.  I’ve still got to check my writing carefully, but now I do it one paragraph at a time, so it’s not quite so bad as before.

Extract of a diary first published in FOCUS magazine in December 2001.

Find out more about nystagmus from the Nystagmus Network.