But first, a question. Who’s your favourite children’s author?
David Walliams? Eva Ibbotson? Onjali Rauf? Eoin Colfer? Malorie Blackman? Adam Blade? J K Rowling? Jacqueline Wilson?
THANK YOU
Following transmission of the Nystagmus Network’s Radio 4 appeal, presented by Richard Osman, the charity has received universally positive feedback on the clarity of the broadcast’s message. One listener, in his 70s, said he had learned more about nystagmus in those 3 minutes than throughout the rest of his life. We have been contacted by several individuals saying that they were totally unaware of the condition previously or that Richard himself lived with nystagmus. We have also enjoyed unprecedented social media engagement. With transmission following closely after Nystagmus Awareness Day on 20 June, the appeal raised awareness of the condition to new heights.
In 2020, when most fundraising has ceased and people with nystagmus have been struggling with homeschooling, social distancing, shopping, lack of hospital appointments and isolation, the appeal has been a lifeline to the charity and the nystagmus community in terms of generating donations.
The total raised has reached almost £8,000 to help the charity extend and develop its support and information services. This means that, as eye clinics and high street opticians begin to reopen, patients and their families will have access to information about nystagmus. Clinic staff will be aware of their needs, thanks to training the charity is now able to provide. In September, when children return to school, parents and school staff will enjoy the benefit of accurate, up to date information about education support to ensure that all young people with nystagmus attain their academic potential.
We are indebted to our wonderful presenter, Richard, for kindly agreeing to voice our appeal and share his own reflections on living with nystagmus. We often tell young children that, with the right support, they can achieve anything, despite their disability. They can even become a famous TV presenter if they work very, very hard. Thank you, Richard, for the inspiration and thank you to everyone who responded to the appeal.
We are delighted to announce that 16 year old Wilson is the winner of our Nystagmus Awareness Day photography competition: The View from my Window.
Wilson is very pleased to have won a competition he didn’t even know he’d entered. Each evening Wilson sends home to his Mum a photograph of the view from his bedroom window at school. His Mum was so touched by the thought and Wilson’s beautiful photos that she entered one of them secretly in the competition and Wilson has won.
All entries were from adults and children were judged by internationally acclaimed photographer, David Katz.
David said: “It was a real honour to be asked to judge these wonderful pictures by fellow VI photographers.
‘The images were fantastic and show that VI photographers can take great shots just as well as anyone else. It’s not about how far we can see, it’s about what we see.
‘The image I have chosen shows that perfectly in every way.
‘Much respect to all those who entered. Practice makes perfect. And huge congratulations to the photographer of the image I have chosen.
‘No Such Word As Can’t.”
Wilson wins a Nystagmus Network T shirt.
The Nystagmus Network is delighted to announce that it has been granted a BBC Radio 4 charity appeal.
The appeal will be presented by well known TV presenter, broadcaster and author, Richard Osman on Sunday 5 July.
Richard has nystagmus himself and says it is his “absolute pleasure” to be able to support the charity in this way. Although he enjoys a successful career, he explains that at school “I had to listen an awful lot”. He famously cannot use an auto-cue when presenting on TV and must commit everything to memory.
The charity is particularly thrilled to have Richard’s support with the appeal as he is something of a role model to children and young people who have nystagmus. They see him on TV and know that they too can achieve their ambitions if they work hard and get the support they need.
Richard’s success and high profile are also a source of great comfort to the many parents who worry what the future may hold for their visually impaired children.
The charity’s Information and Development Manager, Sue Ricketts says: “We are so pleased to have been awarded this opportunity to have a Radio 4 appeal. Many listeners will hear about nystagmus for the very first time from someone who lives with the condition himself. What better way to raise awareness?”
Every pound donated to the appeal will help the Nystagmus Network continue to support the children, adults and families living with nystagmus and provide them with the information they need to thrive.
Picture of Richard Osman courtesy of Penguin Books
A Guest Post by author and nystagmus Mum, Nadine Neckles
So the world has turned on its head and what we once considered normal and safe has morphed into anxiety inducing, mask wearing, groundhog day feeling ‘normality’.
COVID-19 has changed a lot of what we do and how we do it, including how and where our children are taught.
Entering into lockdown I had big ambitions. I would replicate school as closely as possible. There would be structure. Each day, a bit of maths, English and therapy. My daughter, who has nystagmus, also attends a specialist school as she has learning difficulties and thus therapy is a BIG part of her curriculum.
It started off promising, with bundles of enthusiasm from me. I got to play, being ‘teacher’ at ‘Mummy school’ and I secretly loved it! But by Wednesday of the first week (yep, the first week) I was already drowning. Literally, not just by the reams and reams of paper I’d over zealously printed off, but in managing my child’s needs.
I’d done what I’ve done many times in the past and forgotten (or not considered enough) the impact of her visual impairment and other needs on her whilst at home.
After 30-40 mins in the morning she was done. Finished. Not able to do anymore schooling. This didn’t fit into my plan of teaching at least 4 hours. It also meant this tiny window of opportunity to teach had to be masterfully crafted to fit with her baby sister’s nap time.
Said sister is not one to follow my meticulously planned teacher timetable and I found myself running up and down trying to help them both at the same time. So, I needed reinforcement and thus the substitute ‘teacher’ Miss TV was brought in.
Curated TV shows were picked in an attempt to allay my guilt at not being as present as I wanted. But, just as a ‘solution’ was found, more challenges arose.
TV was adding to her fatigue. The iPad was the same. Screen time, although a great tool, was making her eyes more tired.
By the afternoon she was over stimulated. Her sensory issues seeming to grow each day. Chewing her clothes, shoes, hairbands indiscriminately. Her temperament was also changing across the day, getting more and more irritable.
I tried introducing playtime in the garden on lovely days, but very quickly she would ask to go indoors or stay outside whilst hovering in the available shadows.
I had to evaluate what I was doing and how I could change them to better fit for her.
10 mins playing with the abacus (yes she prefers tactile visual 3d objects when learning maths). 10 mins on the computer later on. Mix it in with play with her and her sister and bingo you have 30/40 mins of maths done.
My daughter clearly needs reassurance in these times. On a trip out to the park a passerby prompted a scared exclamation from her that she was ‘scared of people’. Being inside and kept away from friends and family was having an impact on her I hadn’t imagined. Indoors she’d seemed fine and at ease with our explanation about COVID-19, but how this manifested in a small child’s mind was, in fact, worry. So a deliberate decision as a family was made for daily trips out. Less emphasis placed on following the curriculum but more on her wellbeing.
TV is great but it needed to be limited and thus Miss TV could only come to ‘teach’ after lunch. Having the morning free of screen time gave her space to feel … bored. And though this can be incredibly annoying for us parents (as we are normally the boredom ‘slayers’) what has transpired for us was a growth in her independent play.
One thing I’ve learnt is that in my effort to support my daughter I also facilitate things too much for her, so she has grown used to always asking for help instead of trying to overcome the challenge herself.
Perseverance is a skill and very much linked to confidence. Being comfortable with getting things wrong is also very much part of our children’s journey.
As a parent of a child with needs, I always wanted to mitigate her feeling of helplessness. I wanted her to always feel she can ‘do it’ even if she needs help.
This lockdown has shown me that this is a key thing she needed to learn alongside her academic attainment.
Please don’t misunderstand me. Always have things in place that allow your child the best possible chance to access their work comfortably. But, separately, also encourage their own desire to work things out on their own.
The lockdown isn’t over and, while easing might be slowly coming in, we’re still far away from normality. This time has been revealing and a time I’m thankful for. There’s still enough time for further revelations but I will leave that for another post!
Keep a diary of any changes or concerns regarding your child’s eyesight. Although hospital appointments might not be happening as regularly, still speak to an ophthalmologist if you have any concerns that you feel can’t wait. Also keep in touch with your child’s QTVI who can provide help and support with homeschooling during this time.
Nadine is the author of ‘Can I Tell You About Nystagmus?’
A friendly guide, featuring a girl called Amber who explains all about her ‘dancing eyes,’ or nystagmus. Amber explains how children with nystagmus might need to read, learn or play differently, and what their families, school and friends can do to help.
In this Guest Post, Neil writes about his experiences of lockdown as a visually impaired person.
I’m registered partially sighted and diagnosed with nystagmus and ocular albinism from birth. Both conditions will never improve, but fortunately will never get worse either, so I’m told.
Basically, I’m extremely short sighted and on a good day (with the correct lighting) I can clearly recognise a person’s facial features and movements from about two feet away. Any further and people just become a blurry shape. I also have very limited depth perception so cannot see stairs, pavement edges or judge distances.
When the pandemic started in early March, I began to feel more anxious about catching the virus myself and passing it to my fiancee, who had just come out of hospital. At this stage I wasn’t really thinking about how it would affect me from my disability standpoint.
Each day I was travelling on the train to work. I was getting more and more worried about taking the virus home with me. On 18 March it was announced that schools would be closing and all staff would be working from home. That announcement was such a huge relief for me; my fiancee was still recovering and the thought of her or the kids catching this virus terrified me.
A few days later I was called by work and advised that we would each be working a day in school on a rota basis, as our school would be providing childcare provision for key workers.
I can’t describe the sheer panic that I felt during that phone call. By this time, we had isolated ourselves as a family and were happy to live that way for the foreseeable future, risk free. Now I was faced with the prospect of venturing out of the house. This is the first time I can recall thinking about how I was going to cope without being able to see other people clearly.
The first journey was nerve racking, to say the least. However, when the bus pulled in, I did feel a small sense of accomplishment. The train journey home was helped by the fact that I was the only person travelling in a carriage, so my anxiety about being close to others didn’t really come into play.
As the weeks have gone by my anxiety levels have diminished. I certainly feel a little braver when I leave the house for work each time. But those anxieties never really leave you.
The next big issue for me was leaving the house for shopping. The first few weeks of lockdown, our daughter was happy enough to pop to the local shop at quiet times for the essentials. We knew this would have to change as we were slowly eating our way through the supplies in our chest freezer. This is when my second major pang of anxiety kicked in. How can I maintain a social distance from others when I can’t see them clearly and have no idea how close they are to me?
My fiancee and daughter went shopping a few times to quieter supermarkets, but I felt more and more guilty that I wasn’t able to assist with this. So I made the stubborn decision. I was going to brave a walk across the road to the shop on my own.
My fiancee is so supportive of me and knows that when I’ve got my “I’m doing this for my own self confidence!” head on, its best to leave me to it. So I arrived at the front of the store, disabled lanyard on, white symbol cane in my hand. I could make out a massive queue of people stretching around the corner and had no idea of where to go / what to do. The staff there are extremely helpful, but even so I came close to a few people and was told in no uncertain terms I was too close and what was I thinking of. It was a nerve-racking experience.
I’ve always relied on being able to pick items up, check labels to ensure I’m buying the right thing. This was now not allowed. I opted for the easy way out that day and picked up a few things I already knew the locations of. Thank goodness they didn’t change the layout that day.
When I got to the till I started to panic again. What do I do? Where do I stand? Then I heard a familiar voice call my name. It was someone I knew. I was saved! Since that day I’ve been shopping with the family on numerous occasions, but I always feel more of a hindrance than a help, because I can’t social distance. I’ve raised many an angry eyebrow by nearly bumping into people in shop doorways and aisles.
COVID-19 has presented us all with so many life-changing challenges and experiences and I hope I’ve been able to give you a small insight (no pun intended) into what it’s like for a person with a visual impairment.
I would encourage everyone to share their experiences during this pandemic, because by sharing we are hopefully helping others to understand and make life that little bit easier for people who have found themselves less able to be self-reliant over the past few months.
Stay safe everyone!
It’s national and international Nystagmus Awareness Day on Saturday 20 June 2020. We may all be staying at home this year, but we can still mark the day and raise awareness to ensure that the 1 in 1,000 adults and children living with nystagmus enjoys a greater understanding of their condition and a better quality of life as a result. Here are just some of the ways people can get involved.
In the lead up to the big day, the charity is running its ‘how amazing are you?’ campaign, sharing stories of adults and children who have achieved great things despite living with nystagmus, or maybe even because they do. These stories bring a great deal of hope and comfort to families where there is a new diagnosis of nystagmus. Anyone who has nystagmus can submit their story.
We want to raise as much awareness of nystagmus as possible this year and make sure that everyone has a chance to take part, so we’re running our wobbly photography competition: The View From My Window
We know that lots of people who have nystagmus are also keen photographers. Most notably, of course, is internationally acclaimed photographer, David Katz.
David revealed only in recent years, in his film “Through my Lenses” that he has ocular albinism and nystagmus and is actually registered blind. Nevertheless he has enjoyed a stellar career in photography and has created some of the most iconic press images.
When the charity asked him to judge the competition, David said “I would be absolutely delighted and very honoured to judge the Nystagmus Network competition … It has constantly amazed me since making my story public how many of us with VI are into photography.”
Whether you have nystagmus or not, whether you have the latest camera or just a phone, and wherever you are in the world, you can take part.
The charity launches a brand new publication, Nystagmus is …, inspired by 80 year old Roger, on Nystagmus Awareness Day 2020. The booklet is full of contributions from people, like Roger, who live with nystagmus, describing how they feel about it and how it affects their lives. For the first time people can read what it’s really like to have nystagmus by the people who really know.
Nystagmus is … will be available FREE from the charity’s online shop from 20 June 2020.
The Nystagmus Network raises awareness of the condition every single day of the year, because they believe that the more people who know about it the better. It means that adults and children who have nystagmus will get the help, support and services they need in education, employment, health, mobility and leisure to be able to lead a successful and independent life.
The charity’s Information and Development Manager, Sue Ricketts says: “Holding a national and international Nystagmus Awareness Day serves as a reminder to everyone that the Nystagmus community is here and their voices need to be heard.”
Every time someone takes part in Nystagmus Awareness Day or tells someone what they’re doing and why, that’s one more person who understands what nystagmus is.
Every pound raised or donated helps the Nystagmus Network support research teams across the UK to investigate this hugely complex condition, to find better diagnosis, treatments and continue to work towards prevention and cure.
Ends
Notes to editors
Contact: Sue Ricketts, Nystagmus Network
Email: [email protected]
Tel: 01427 718093
Website: https://nystagmusnetwork.org/nystagmus-awareness-day/
Facebook: https://www.facebook.com/NystagmusNetwork/
Twitter: https://twitter.com/NystagmusUK
Images and logos available on request
Nystagmus is a serious, lifelong, incurable form of visual impairment where the eyes constantly move uncontrollably, affecting focus and depth perception. At least 1 in 1,000 babies are born with nystagmus. Many other people acquire nystagmus beyond infancy and into later life.
The Nystagmus Network is a registered charity in England and Wales, number 1180450. Our charitable objectives are to provide support and information, to raise awareness and to fund research.
A fabulous new publication, Nystagmus is … a guide for adults, is now available FREE from our online shop. The booklet is inspired by the wonderful Roger (pictured), who first contacted us with the idea last Nystagmus Awareness Day. He began with the words: “I have enjoyed nystagmus for nearly 80 years” and went on to outline his suggestion of asking people who live with nystagmus to describe it for others.
The end result of that project is full of contributions from people who have nystagmus, describing how they feel about it and how it affects their lives. For the first time you can read what it’s like to have nystagmus by the people who really know.
When we shared an advance copy of Nystagmus is … with Roger, earlier this week, he said:
“It’s fabulous and should open up a whole new understanding of vision disability awareness and training. I am proud to have been part of it and proud that you took up the challenge of getting and sharing your members’ feedback.”
The Nystagmus Network commissioned a YouGov survey in May 2020, ahead of Nystagmus Awareness Day on 20 June, to see how aware the UK population is of nystagmus. The survey was free of charge, thanks to a competition, run by the Small Charities Coalition of which we are a member.
82% of people have never heard of nystagmus
14% said a friend, acquaintance or family member has the condition
Once we had explained what nystagmus was, we asked people in what other ways they thought nystagmus might affect a person apart from their eyesight. Alongside the usual suggestions of difficulties with reading and writing, employment, socialising and getting around, a startling 24% thought that people with nystagmus would also have learning difficulties.
One of the Nystagmus Network’s strongest messages is that, whilst nystagmus can affect access to learning, it definitely does not affect ability to learn.
It seems we still have some way to go in delivering this message.
Finally, we asked what people thought would most help improve the quality of life of people living with nystagmus. The most popular suggestions were medical research, access to information and adapted technology, with 59% agreeing with us that greater awareness in the general population helps those living with the condition.
We are grateful to YouGov and the Small Charities Coalition for this opportunity to poll the UK population at large and pleased to report that all 250 of our respondents are now ‘nystagmus aware’.
In the run up to Nystagmus Awareness Day on 20 June 2020, we are once again asking you to share your amazing nystagmus success stories.
Not only do these stories help raise awareness of nystagmus, but they also bring hope to so many parents whose children have just been diagnosed.
In previous years we’ve heard some truly amazing stories of success or achievement despite, or maybe even because of, having nystagmus.
Let’s make 2020 even more amazing!
Email your amazing nystagmus stories, plus photo, please, to [email protected].
