This week the video blog at the Nystagmus Network features our very own Sue!
The video is her interview with Peterborough Community Radio which is hosted by one of our very loyal and long standing supporters Tim Heywood. Sue and Tim discuss the Nystagmus Network, nystagmus and Wobbly Wednesday.
Our son Joshua was born with oculo-cutaneous albinism in 2003. It was a surprise to both our families as no one on either side had any recollection of anyone in the family having albinism.
The thing that has affected Josh most is his visual impairment. His eyes let in too much light due to the reduced pigment and he has nystagmus.
Josh was diagnosed aged 2. We had no idea there was anything wrong. We wondered why his eyes moved from side to side but he had coped perfectly as a toddler, learning to do everything when he was expected to and generally being loud and laughing a lot.
“Where have been some mile stones in our 13 year journey so far, with many more to come I’m sure!” Jamie Fuller
The key for us is to build strategies for situations and approach everything with a ‘how can I do that?’ attitude. Yes, we have to modify and adapt, but most of the time it works and even if we don’t ever do it again at least he can say ‘I’ve done that’.
We are now two years into senior school and Josh is in top sets for everything. He no longer has support in school and is fiercely independent. He uses an iPad and his teachers are aware of his needs.
The one area that remains difficult is team sports. From an early age we never discouraged team sports, but directed Josh towards sports he could do with a group of people rather than in a team. At the age of 9 Josh achieved his black belt in Tae Kwon Do. From a very early age he could swim like a fish. He has dabbled in other sports like kick boxing, but his main and true love has always been skiing.
Josh learnt to ski on family holidays from the age of 3 and immediately enjoyed the freedom and speed that came with it. Year after year he became more competent and about 2 years ago he asked if he could race in competitions.
“All the things Josh can’t do well evaporate the moment he gets on the slope.” Jamie Fuller
Josh skis with me as his guide. We communicate through headsets with me describing the terrain, the direction and obstacles to avoid. Getting into competitive skiing was difficult. We approached our local indoor ski centre but they were, at that time, unwilling to take a visually impaired person in their classes. We then approached Disability Snowsports. We joined them every month for a recreational session but this was not enough for Josh, he wanted to race!
Through contacts at the organisation the Paralympic Team GB Coach became aware of Josh and after many meetings, tests and discussions Josh was advised that he was not visually impaired enough to be classified by the IPC. So what now? Not visually impaired enough to be trained by that team and too visually impaired to ski without a guide.
We approached the ski race team at our local ski centre and asked if we could join them. We explained the situation, and they were very accommodating. Finally proper slalom race training began. Training is great, but Josh still wanted to race! Many emails later and with the help of lots of other enthusiastic people we are now racing in able bodied competitions. We have to abide by their rules and Josh doesn’t get any allowances in time for his visual impairment, but he regularly hits middle of the group for his age, something he is very proud of and something that boosts his confidence.
We have seen Josh progress at such a rate through skiing. He can’t ride a bike at 10mph and yet he can ski at 40mph easily and freely. Although Josh is awesome he is not alone, we ski with several visually impaired skiers, some far more impaired than Josh and they too experience freedom on snow.
“So there is something in this. I urge you to come and give it a go!” – Jamie Fuller
We have organised a few trial days for complete beginners and some sessions for those who already ski and would like to improve.
Learn to ski from just £11 per hour in Manchester, Hemel Hempstead, Milton Keynes or Castleford.
If you can already ski, string several turns together and stop confidently, we can offer monthly sessions of 1-2 hours for around £15 for you and your skiing guide.
Please contact us here to register your interest and we’ll let you know when and where.
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.
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!
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
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
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:
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.
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.”
I had always planned on being a laid back parent. My son, born with perfect vision, had been a breeze. And then my daughter entered school. Even though she had albinism and nystagmus, I assumed I’d continue being easy breezy. I would explain the accommodations she needed, the teachers would listen, and we would all go merrily on our way.
While somewhere in the back of my mind I probably knew that this was an unlikely scenario, I still wanted it to be true. No one could tell me for certain what kind of accommodations she’d need because no one knew exactly what her capabilities were. Maybe her vision wouldn’t be that bad. Or maybe it would be terrible. But I was pulling for “not that bad” and if “not that bad” turned out to be the case, then maybe we could squeak by with only minimal accommodations. And maybe I could continue being the laid back parent I wanted to be.
Preschool went well. She sat in front on the rug. Her teachers let her come up and look closely at books being read to the class. See – not that bad, this whole visual impairment thing. And then my daughter’s vision teacher suggested she take a test to see if she could qualify for the gifted program in New York City, where we live. My son was in the program already and loved it. It made sense that my daughter would qualify for the program too. I checked off a box on a form requesting a large print test, and thought, maybe that’s all she needs. Maybe we go through life checking off boxes for large print tests, and everything else just goes according to plan. But when the results came back, it was obvious that large print tests were not going to be enough.
When I called the department of education to say I thought perhaps she hadn’t been able to see the large print test, they dismissed me. Not everyone qualifies for the program, they said. Clearly I was just another pushy mother who felt her child’s genius hadn’t been properly evaluated. It’s possible that if I’d been listened to the first time I might have continued being the laid back parent of my dreams, or maybe this was the inevitable shaking I needed – someone grabbing me by the shoulders and saying: if you don’t stand up and yell for your daughter, no one else will do it.
So I stood up and yelled. And many months and meetings later, the department agreed to give my daughter the test in a digital format where she could control the size and the contrast. Lo and behold: she tested into the program. But it’s hard to be the screaming mother all the time. And by the time my daughter started Kindergarten I thought: I got this. I got the largest department of education in the country to change the way they test visually impaired children, after all. Surely I can navigate Kindergarten.
I met with my daughter’s teachers before school started to walk them through the technology she’d be using. The rules, which were new to me then but I can now recite in my sleep: she sits in the front of the class, she uses an iPad, please remember to charge her CCTV. And then one day my daughter came home and said she hadn’t been able to see her math test. So I emailed her teachers.
“But she didn’t say she couldn’t see the test,” they wrote back. “And also, she got all the questions right.”
I picked up the phone and called the teachers, and said the words that I now know I will be repeating often and for the rest of my life: just because she did well doesn’t mean that with the correct accommodations she can’t do better. I wish the cadence were better, that there was a short poem I could write or a snappy six word phrase that could convey the same information, but if there is I haven’t found it. Nonetheless, this has become my mantra.
Last month my daughter started first grade. At the meeting before school with her teachers I shared the story of the math test and the gifted test. We also discovered together that her reading level had been assessed incorrectly.
“We are navigating this together,” I said to the teachers. “If we’re not partners then it’s not going to work, and I’m going to be calling you up saying she couldn’t see something.”
I don’t know if I came across as an overlycrazed helicopter parent or not, but I don’t care. This is the kind of parent I am now. The next week, when my daughter came home from school with a book at her correct reading level, accompanied by a CCTV and a note from her teachers asking if I might be able to download the book to her iPad, I knew that this is how it will be from here on out. I can luxuriate in being laid back with my son, but when it comes to my daughter, I’m the parent I never thought I’d be. And I’m okay with that.
My son, George, has congenital idiopathic nystagmus. The terminology may be familiar to ophthalmologists, but it’s baffling to anyone else. In George’s case, no one can identify a cause.
So begins our story of discovery about nystagmus, what it means to those who have it, to those around them and the shocking ignorance of people who should know better.
George was born without complications in July 2006. I knew there was an issue when, unlike his older sisters, he struggled to make eye contact during feeding and his eyes wobbled constantly. At 5 months the local GP sent us for video sight testing, which he failed. The follow up appointment with the consultant lasted 5 minutes and went along the lines of “George has nystagmus; he will never go to a mainstream school; an optometrist will see him yearly. Good bye.”
It took another year to research consultants who specialised in nystagmus, hold the consultant to ransom for a referral and finally, aged 18 months, we were on the list for Prof Gottlob’s clinics in Leicester – a 5 hour drive from home.
Over the next few years George fell down steps, walked into walls, screamed in shock when anyone spoke to him in his pushchair. He would run to cuddle or hold hands with any woman bearing a vague resemblance to me, recoiling in horror when they spoke.
When George started school, the teachers were provided with a Nystagmus Network information pack. I told them I had no idea how the condition was going to affect him at school, but I did know he would struggle to identify friends with everyone in school uniform and they would need to show him the difference between the girls’ and boys’ toilets!
The impact of nystagmus became real in February 2015 when George was 8.5 years old. He ran into a wall during a PE lesson, a teacher asked if his constant eye movement was a symptom of autism and I witnessed a child snatch a football off George saying “There’s no point, you can’t see it anyway”. Apparently kicking a ball and hoping for the best isn’t good enough strategy for competitive 9 year olds.
There followed a set of meetings with his teachers and the local authority’s visual impairment advisor. It turned out that George couldn’t see the whiteboard, could only read red text on a blue background and used his listening skills to locate people. He thought this was how all people saw. His exceedingly high academic performance meant we all thought he was coping. When he’s scared or upset, his brain abandons his eyes to control his emotions. At this point he says it’s as though water has filled his eyes and whatever sight he has is gone.
The Nystagmus Network suggested George put together a presentation for his classmates to give them an idea of how the condition affects him. I’ve spent many hours finding activities for him such as blind football, blind sailing and soundball (tennis) which is opening up a new world of sport.
After all this, school still managed to lose him on a day trip to the British Museum. He was left looking at an exhibit and then followed a construction worker in a hi vis jacket into a restricted area thinking he was a teacher. When I asked how George managed his way into an unfamiliar and busy building they replied he held onto the child in front’s rucksack strap. How demeaning.
I’m still angry with school for not bothering to find out more about nystagmus. George has another new, fresh-out-of-university teacher next year so I’ll sound like the paranoid parent going through it all again. He hates my drawing attention to it, but if I don’t, people don’t understand.
At a recent gathering of old friends I asked George why he didn’t say hello. He said he didn’t recognise their voices or see their faces properly. So I said “Well, get up close to see them!” He replied “How would you feel if someone got up close to check out your face?! It’s embarrassing”.
The good news is George is more willing to talk about what he can and can’t see, how annoying it is when traffic crossings don’t beep and looking forward to the day he can ride a bike without me behind shouting instructions. He crosses the road by listening to tyres on tarmac and his ability to decode what he can see with conviction is absolutely extraordinary.
The future? I’ll still be desperately trying to educate teachers and encouraging George outside his comfort zone to approach activities in a slightly different way. He wants to fulfil his dreams of joining the army, but realises he will only be a sniper if the enemy wears hi vis clothing and stands still. He may stand more chance on the technical/engineering side or he can join the Paralympian football team.
He still holds my hand in unfamiliar environments and for that, I’m grateful. He can’t find me in the audience at school performances. For that, too, I’m grateful as I’m often late. I love his imagination and interpretation of the world he hears. His speech is so eloquent that he is a testament to the power of listening. He may not see as well as other children, but that doesn’t mean his dreams for his future have to be sacrificed.
