Category: Living with nystagmus

A mum with nystagmus shares her story

I made my first contribution to the Nystagmus Network Focus newsletter after much parental cajoling and days, weeks, months, if not years, of adolescent procrastination, in the mid-1990s. To save readers from searching the archive, I’ve got what I consider to be mild nystagmus and bad short sight and astigmatism.

Contact lenses are better than glasses but even with them I can’t see the numbers of buses until they’ve whizzed past the stop. All right, there are a few other inconveniences, like not being able to drive, but you get the picture. Well, here we are a couple of decades later and I am a parent.

“ My parents were brilliant about my nystagmus. I have to say that, they’re reading this!” – Julia

My daughter is 18 months old and it was clear from early on that her eyesight was better than mine; a smile from her father across the living room that I would not have seen without glasses brought a response from our few-week-old girl. So far, so no myopia. Nor have we seen any signs of nystagmus, so we congratulate ourselves on the random allocation of genes. (My father has nystagmus, hence the fear of passing it on.) That didn’t stop me from wondering about what sort of parent I would have been if she had had similar eye problems.

But how to help her understand my eyesight? As she gets to grips with the world around her, I realise it won’t be long before she’s pointing to the sky and saying, “Mummy, what’s that up there?” and I’ll have to go through the checklist. “Is it a bird? Is it a plane? Is it a figment of your imagination or mine?” How do I convince her that she doesn’t need to sit as close to the television as I do or hold books as close? Parenting: a catalogue of unknowns.

As she grows older, she is becoming more interested in story books, rather than picture books with one or two large-print words per page. I’m already having problems reading the text while allowing her to look at the book too. It’s just like that you’ll-have-to-share problem I had throughout primary school; I could never get close enough without hogging the textbook. Fortunately, I know most of the books we’ve got by heart by now, and no one is able to complain when I get a turn of phrase wrong — yet.

My nephew, aged three and a half, has recently issued the rude reminder that I’m pretty ropey at ball sports. I could tell that he was getting frustrated with my lack of volleying skills playing badminton in Grandma and Grandpa’s garden. I shan’t take it personally but will make a note to try to improve myself before my daughter gets to that stage.

My parents were brilliant about my nystagmus. I have to say that, they’re reading this. They were, though – in all areas but one, and that is that I learned to play the flute when really I wanted to play the cello. As I remember it, I was coerced into choosing the flute. My mother remembers it differently, but I think the arguments were as follows: the flute is smaller and easier to carry and, crucially, it goes sideways so you can get as close to the music as you need. Plus, James Galway has got nystagmus and he plays the flute. Valid arguments, yes, but I still believe that the cello is basically better than the flute and I’m sorry I didn’t get to learn it when I was young.

I have a number of experiences as a musician, albeit an amateur, related to my eyesight that I may share in another piece. I might not wait twenty years to file that copy. The moral of this story, though, is that if my child, nystagmus or no nystagmus, chooses to learn an instrument, she has free choice. But if she picks something large like the drums, the harp or the double bass, she’ll have to negotiate that with her father, the driver.

“If my child, nystagmus or no nystagmus, chooses to learn an instrument, she has free choice.” – Julia

If you have a story you would like to share with the nystagmus community through our newsletter please get in touch with us here.

Fundraising for the Nystagmus Network

Our latest video blog features an interview by our very own Sue with two of the charity’s fundraisers! Gavin and Paula Birch recently held a fun day and football match for the Nystagmus Network where they were able to raise funds and awareness of the condition. Their daughter Freya was diagnosed with nystagmus when she was eight weeks old and they want to help the charity and other families in any way they can.

Everyone at the charity would like to say a big thank you to Paula and Gavin and if you would like to make a donation to their event you can do so here http://www.justgiving.com/nystagmusroyalqueenfc.

Nystagmus and the new school term – by Elisheva Sokolic

When your child has nystagmus there might be slightly more to think about before you wave goodbye at the school gates than new shoes and homework diaries. Especially in the early years, when your child can’t necessarily advocate for themselves, it can be helpful to plan a meeting with the new teacher either ahead of time or in the first few weeks, to help form a relationship and make any extra needs clear from the outset. As a parent to a child with nystagmus, here is my own checklist of three points to discuss, but feel free to add your own!

1 – Visit the classroom before school starts

Getting used to a new space can be tricky. Can you organise to bring your child in ahead of the first day once the room is set up, so they can see the room empty of noisy bustling children and parents? This can really help them find their way around, from the sinks to the book corner, from their peg or tray to the toilets and back again. Mention to the class teacher, too, that it would help if they let you know before they make a big room change, such as moving the home corner or rearranging the outside area.

Does your child have a side they see better from, or an optimal place to sit? If so, make sure the teacher knows it before the first day, so that they can give them the optimum carpet space or desk. Will they be hanging up their own coat and putting away their lunchbox? Perhaps your child’s peg can be at the end of the row, or their tray right at the top for easy access. If the children have a spot for their water bottles, how will you make sure your child’s stands out from the crowd? Maybe a reserved spot for their water, a brightly coloured bottle or a name label with large print?

“Moving classrooms can be a real upheaval for a child with nystagmus.” – Elisheva Sokolic

2 – Access to school resources

As well as finding their way around the classroom, you want to make sure your son or daughter can access all of the resources. Large and clear wall displays with good contrast can be really helpful.

If your child is in Reception or Year 1, they will be starting to learn to read. The early reading books have large print, but as they become more confident, the font sizes get dramatically smaller-and fast! Your school should be able to sign up to www.load2learn.com which is a great resource for schools to access books electronically, so that font sizes can be increased for your child’s comfort level. There are also large print books available from RNIB. You might want to explain to your class teacher that magnifying can be useful for occasional worksheets but doesn’t always help for reading, as the image and text is often distorted or blurred by the magnification. You could try a dome magnifier, which combats this effect and which your child can use for close up work as well.

One great tip which has helped our son feel more included during carpet time is making sure he has his own copy of the book the class teacher is reading at story time so he can follow along and see the pictures. Similarly, for older years, you might find a wide screen monitor or tablet device linked to the electronic whiteboard is useful.

“What does the teacher plan to do to make sure that your child doesn’t get left behind?” – Elisheva Sokolic

3 – Explain nystagmus

Over the years, we’ve tried different ways of explaining nystagmus, from the full on science of the involuntary eye wobble, to a simple “he doesn’t see very well.” We’ve found that explaining the effects rather than the cause is best. As parents we feel like nystagmus experts, but teachers are not and don’t have time to become them either! It’s important to narrow down all the information to what is most important for our child’s caregivers. For us, a teacher-parent meeting is successful if the members of staff leave understanding these three points:

  1. He can’t control his eye movement or his head tilt – this may make him seem like he isn’t paying attention. You don’t need to try and alter his head position.
  2. His glasses and sunglasses don’t correct the vision – so, he still doesn’t see well even with them on.
  3. The eye movement is likely to make him increasingly tired – therefore he may be in need of more support in a situation which is out of the ordinary, such as sports day, assemblies or outings.

There may be specific points you want your teacher to know. Does your child struggle with light sensitivity? Maybe they have glasses which need to be cleaned a few times a day. Perhaps there are behavioural issues linked to their sight to look out for.

I hope the above helps and it would be great if everyone can share the three bullet points that you want your child’s teachers to understand after meeting with you on the Nystagmus Network Facbeook page here.

Rugby champion shares his nystagmus story!

I’m Wil Maudsley and I was diagnosed with nystagmus at three months old. From the outset my family decided that I would do everything my peers would do and I strongly believe that this has made me the person I am today. Objects do not move around with my vision, but I wouldn’t know what it would be like to have “normal vision”. My nystagmus affects me in different ways day to day like not being able to drive or recognise people at a distance, but sport is one place where I don’t let it. I might find things a little harder than everyone else at first but with the right attitude and enough patience I believe that anything can be achieved.

I currently work as a community rugby league coach for the Warrington Wolves Foundation. Through the foundation we do lots of events to raise money for the charity. I will mention a few that I’m extremely proud of. I am a massive rugby fan and have played since I was four years old. I am currently playing fullback for Woolston Rovers ARLFC in the NCL league.

“From the outset my family decided I could do everything my peers could do” – Wil Maudsley

My biggest achievement to date is completing the national three peaks challenge in less than 24 hours. 23:43 to be exact! The challenge meant that we had to travel to and climb Ben Nevis in Scotland, Scarfel Pike in the Lake District and Mt Snowdon in Wales all in under 24 hours. I was one of only four of our group of 15 that completed the challenge in time. The challenge was physically tough especially having to climb one of the mountains in the dark and, as you can imagine, was a little extra difficult for me.

Another challenge I have completed is our charity cycle to St James Park in Newcastle. We left the Halliwell Jones Stadium on Thursday 28 May and cycled 190 miles over two days, arriving at St James Park on Saturday 30 May ready for a full weekend of Super League fixtures. We battled the rain, hail and wind, along with the North Yorkshire hills, and all completed the challenge safely. It was a fantastic experience and one that I would love to do again.

The biggest lesson I’ve learnt is not to be embarrassed if you need help and not to be scared to ask. When I was younger I was guilty of this and would often struggle on my own. I think I was almost too proud to ask for help. I also think I was a little worried about what people would think of me or how they would react. But in reality everyone I’ve asked for help has been more than happy to. They’re usually genuinely really interested in my eyes and how they work.

“The biggest lesson I’ve learnt is not to be embarrassed if you need help and not to be scared to ask” – Wil Maudsley

Parents share their delight in their son’s success

When Maxine and Matthew Wilson’s son, Charlie, was diagnosed with nystagmus at six months old, they freely admit they went into a panic, which is probably what most parents do when suddenly faced with the prospect of their child growing up with a visual impairment. They thought he’d never be able to play ball sports or ride a bike. How wrong they were!

Charlie is now 8 years old and loves playing football, especially in goal. He has also learnt to ride a bike. In April this year Charlie amazed his parents by riding his bike for 10 miles along the camel trail from Padstow to Wadebridge. It must have been a challenging ride with lots of people cycling in front of and towards him on what is in places a fairly narrow path.

Proud Mum, Maxine, said:

“Charlie doesn’t let his special eyes stop him from doing anything. Lots of people aren’t even aware of his nystagmus. They just know he wears glasses. Keep going Charlie. We are so proud of you and love you lots.”

Meet Lucie!

Hi. I’m Lucie from Hampshire. I’m 21 years old and I’ve had nystagmus and ocular albinism since birth. I wanted to offer some comforting words to any young people or parents of young children concerned about how rich a life you or your children can expect to live. As a 21 year old living an active and interesting life is paramount to me and I can assure you that my childhood was never boring!

At the minute I’m working as an apprentice at a riding school and training for equine qualifications. I’ve passed a fair few already. I have my own horse called Heidi whom I adore. We compete in affiliated show jumping regularly. In the past I’ve also enjoyed skiing, trampolining, golf and rock climbing. I’m also really into running, especially long distance, and I’m hoping to run the London Marathon to raise money for the Nystagmus Network next year.

Like many people with nystagmus, I struggled at school. Asking the teachers to write in a dark pen on the whiteboard and enlarge worksheets was always awkward, but, if you can manage to pluck up the courage, it will be easier next time.

PE was difficult, especially ball games. I used to get hit on the head a lot by the ball because I didn’t see it coming. So we invested in a rugby hat and a gum guard. I suppose I looked a little odd, but I didn’t have to sit out in PE, which I would have hated, so it was good with me! I have some difficulties when I’m jumping or doing dressage twist. I have to remember patterns and sequences and the colours of the jumps so that I know where I am.

When I was learning to play the piano, rather than reading the music, it was easier if my piano teacher played me sections of a piece and I copied them back. When my friends and I go out clubbing, I always make sure I’m attached to someone so we don’t get separated. My friends are all amazing and understand. We went to a club once that had a lot of smoke and strobe lighting that made it difficult to see, but we all just held hands and danced like that so we didn’t get lost! I think my main message is that you can do whatever you want to do and you will find a way around it to make it work.

Mark

Mark’s story

I’m the youngest of three children and I think that helped a great deal in dealing with Nystagmus – at least I hope it did. Either that, or I was born into a group of eccentrics who somehow guided me through a foggy minefield to where I am now. I often wonder how it happened – luck or design?

My arrival back in the 60s was a great cause for celebration. My family had just moved from Dover to a market town nestled at the base of the South Downs. My brother and sister were two years apart and happy healthy children. My father had just accepted a promotion as a district engineer. They had a new house on a new estate and to top it off I was born.

Apparently I didn’t wreck the party. My sister remembers dad breaking the news to her on the way to the nursing home. ”He’s got something wrong with him, shall we send him back?” He was promptly whacked around the back of the head by my grandmother, who reminded him first to keep his eyes on the road and second, Aunt Jess had also had congenital nystagmus, “and she could play anything on the piano after a sherry”. That’s true, said Dad, “but that talent may not be enough to get him into the civil service or a cricket team”. Another tweak silenced him and my eyesight was never mentioned again.

Once I had been allowed home, I settled down to a long period of recumbent bliss. I was very happy and didn’t want to exert myself. I had blond spiky hair, a fat little face and a happy disposition. Dad would often get someone to poke me so he could capture a smile on his latest gadget, a 35mm cine camera. It wasn’t until after a year, when I still showed no signs of sitting up, that people started to worry. Dad complained that the films were getting boring and that there was a limit to how interesting a horizontal baby was.

Mum took a more practical view. I had all the tests of the day and saw doctors, specialists and health visitors. Sure enough, in my own time, I did eventually sit up, speak, eat and learn to walk. It was here I made my first big mistake. One Christmas, I picked up a discarded plastic ball from a cracker and threw it to my brother. My father’s face lit up with excitement and a huge grin spread across his face, fuelled by a seasonal eggnog. Mother sighed as my father reached for a cricket stump and held it aloft, brandishing it as some kind of ash light sabre. “That’s me lad!” he cried, as he knocked the fairy from the tree, lost his footing and collapsed into a plate of mince pies. My training as his young apprentice was about to begin.

Dad and Obi Wan did not have a lot in common. I’ve seen all the Star Wars films and I don’t recall the Jedi master ever calling Luke Skywalker a “fat head” or chastising him for avoiding a particularly nasty full toss. To be fair, I also don’t remember him giving Luke as many hugs, smiles and kisses as my father gave me. What they did have in common, however, was love, support and a willingness to let their young students live their lives and make their own mistakes.

It’s only with the birth of my children that I realise they must have been incredibly apprehensive about sending their youngest out into the world. True, they had some history of bringing up children, but now they were in uncharted waters. They never pushed me in to see if I sank or swam, they just encouraged me to paddle and watched from the shore.

All was bobbing along nicely until, by a disastrous series of events, I was picked for the school cricket team…

Sound tennis

have always enjoyed sport but often found that trying to take part was frustrating due to my nystagmus, particularly with sports that require seeing the movement of a ball and connecting with it. I tried tennis a few times when I was younger but it seemed impossible. I would never be able to play it.

In 2014, however, we started playing Sound Tennis in Brighton and Hove. Sound Tennis uses a spongy ball that can be heard when it bounces. Those with no or very limited vision (B1 & B2) are allowed 3 bounces. Partially sighted players (B3) are allowed 2 bounces. The extra bounce(s) allow more time to locate the ball. For me lighting conditions and colour contrast make a big difference so in some situations I rely more on hearing to tell where the ball is. Little did I realise how addictive the game would be. I learnt to serve, hit backhands and forehands and gradually hold rallies and hit winning shots.

My colleague, Christine Laurence, who also has nystagmus, had been travelling to London to play the game and contacted me to ask if I would be interested in helping to set up a local club. We organised a launch in February 2014 and were amazed that 29 people turned up, 19 of whom were visually impaired. Sound Tennis Sussex was off to a flying start.

Since then we have helped to set up groups in Shoreham and Eastbourne with others planned. A number of us have taken part in competitions in Newcastle and Cambridge and the National Visually Impaired Championship at the National Tennis Centre at Roehampton, London. We also organised a tournament against a team from London and held a friendly tournament with the Eastbourne club. In November 2015 we received the disability programme award from Tennis Sussex at a ceremony at the Amex stadium.

We have a number of players with nystagmus. The age-range of players is from children to the over 80s. Many like me have never been able to play a racket sport before, but others have been thrilled to find that they can continue or resume playing tennis after a diagnosis of sight loss.

Sound Tennis is growing fast in the UK and across the world and there are ambitions to get the sport into the Paralympics. There are a number of clubs in cities around the country where you can go along and give it a try. Visit www.soundtennissussex.org.uk to find out more.