Wobbly Eyes

Wobbly Eyes

Introduction

The purpose of this article is to help you explain nystagmus to a child. When the child is confident enough, they will be able to share the article with their friends.

When and how you tell a child they have a visual impairment is a very personal decision. Only you will know when the time is right. Here are just a few suggestions on how to tackle this sensitive subject and the answers to some of the questions a child may ask.

What’s wrong with my eyes?

When you were a little baby doctors noticed that you had nystagmus. This means that your eyes keep moving all the time instead of staying still like other people’s. This is nothing to worry about but you need to know that you may not be able to see quite as well as everyone else.

It’s hard for you to understand how nystagmus affects your sight. You won’t know how well other people can see. They might ask you if you can see things but they still won’t know exactly how much you can see. Only you know that!

You might be able to see things really well when they’re very close to your eyes, but find it harder to see things further way from you.

Will nystagmus hurt my eyes?

Nystagmus doesn’t hurt. You won’t be able to feel your eyes moving. You probably can’t even see them moving in a mirror. Why not have a look!

Will I have to wear glasses?

Glasses can’t stop your eyes from moving, but they can help you see better, so lots of children with nystagmus wear glasses.

Will my eyes get better?

You will always have nystagmus and it won’t go away. You will learn to live with it like lots of other people.

You’ve probably noticed that you have to go and see an eye doctor quite a lot. That’s to make sure that your eyes work the best they possibly can.

You might already have glasses to help you see. This doesn’t mean that your sight is getting worse. In fact it might get a bit better as you get older.

Am I the only one?

There are lots of people in the world who have nystagmus. You will probably meet some of them when you get older or you might not even notice. It’s not always easy to tell when someone has nystagmus. It could be that only they know.

There might be somebody else in your family who has nystagmus or you might be the only one. It doesn’t really matter because you can all find out about nystagmus together.

At Home

To help you get around without bumping into things, you probably try to remember where things are. This is really useful as long as things don’t get moved around suddenly. You’ll probably prefer things to be quite tidy around the house so that you don’t trip over too much. You’ll need to be a bit careful on stairs, but you’ll soon get used to it.

Because you can’t always see things that are quite far away, it’s a good idea to have a book or screen close to your eyes or sit close to the TV. This won’t hurt your eyes but it will help you to see better.

At School

At school it will help a lot if you and your parents explain to your teachers how nystagmus affects your sight. Then they can help you to find a place in the classroom where you can see the board.

You might get your own laptop, ipad or tablet, so that you can see clearly what everyone else sees on the board. You can adjust the screen and open and close one or two things at a time so that your screen doesn’t get too full or jumbled.

It’s easier for you to find books, pens and other equipment you need if they’re labeled with a brightly coloured or tactile sticker. At primary school this is important for clothes pegs, PE bags and clips for your wellies as well.

When you’re reading books at school or at home you’ll need to work out what size of print you can see comfortably. You might be able to use magnifiers to help you read books, or use a slotted card or ruler so you can see just one line of the story at a time. On an e-reader or computer screen you’ll be able to alter the text size, contrast and background colour for yourself.

If your teacher gives you worksheets to do, you’ll need to say what size of print you need and perhaps try different colours of paper, too, to find out which one is most comfortable for your eyes.

You might struggle with handwriting a bit and prefer to take notes on an ipad. But there will be times when you need to write things down so that you or somebody else can read what you’ve written, so you’ll need to keep practising your handwriting.

You might want to learn how to touch type so that you can type more quickly. Your teachers will be able to help you with this.

If you find it takes you a bit longer than everyone else to get things finished, it’s not a problem. Your teacher will make sure you have plenty of time to get things done and still be able to go out at break and play with your friends.

Remember – if you need help, just ask.

Out and about

Sometimes nystagmus can make you extra sensitive to bright lights. You might notice that your eyes feel uncomfortable on really sunny days. Wearing sun glasses or a baseball cap can help with this.

Some ball games can be a bit tricky for children with nystagmus, because it takes you longer to see where the ball is and you don’t have time to catch it. Don’t let this put you off trying different games. Swimming, running and long jump are no problem for someone with nystagmus and there are lots of Paralymians who have it.

You can join in with all the same after school clubs that your friends do, like Brownies or Beavers, ballet, drama, music and martial arts. Just make sure you tell the person in charge about your nystagmus and they’ll be happy to help you.

If you’re worried about finding your way around a new school, getting lost on your way to school or walking to the local park or the shops, your parents can ask someone to give you mobility training. This means an adult will help you choose the safest and easiest route, finding the best places to cross the road and helping you remember some important landmarks so that you always know where you are.

Making friends

It’s important to make friends, especially at school, but it can be a little bit difficult when you can’t see very well. You might not always be able to tell when someone is looking at you or whether they’re happy or sad if you can’t see their face clearly. Make sure your friends know about your nystagmus. They can help you by looking at you when they’re talking to you and standing nice and close.

Because nystagmus makes your eyes wobble and because it might make you turn your head to the side, this could make you look a little bit different. Lots of people won’t even notice and certainly won’t say anything rude about it. But you need to know that some children can be a bit horrible if they don’t understand something. They might call you names or laugh. This isn’t very nice so you need to explain about your eyes, that you can’t help it, so that they understand. If they still call you names or don’t want to be your friend, talk to your parents or a teacher about it.

If you feel brave enough you might decide to do a presentation about nystagmus for your class in form time. Then everyone will understand about nystagmus. All the other children could do a presentation about what’s special about them.

The future

People with nystagmus grow up just like everyone else. They can choose which university to go to, what job to do, whether to get married and have children, just like everyone else. Having nystagmus simply means you can’t see as well as some people. It doesn’t mean that you can’t do anything you want to do. Don’t let your nystagmus hold you back.

This booklet was written by the people at the Nystagmus Network, which is a charity to help people with nystagmus and their families. We will always be here to offer you support and advice throughout your life.