Our latest video blog features an interview with one of our young members! In the video Tom talks about starting his new class at school and how he is a vital part of his school football team!
Everyone at the charity would like to say a big thank you to Tom for sharing his experiences.
Today we are excited to officially announce our new volunteers at the Nystagmus Network! Earlier this year we started a recruitment drive to find people who were passionate and committed to supporting the nystagmus community as part of our peer-to-peer support model.
The charity was inundated with applications, ranging from adults with nystagmus to healthcare professionals. Following a short review, we are delighted to announce that the following people will be joining the Nystagmus Network as volunteers:
“Volunteers help us support our community!” – Richard Wilson, Chairman of the Nystagmus Network
Each of our new volunteers will play an important part in the work we do at the Nystagmus Network. They will be a direct link to the nystagmus community and they will be the main contacts for our new call back service the charity offers which can be accessed here.
Along with being very active on social media (such as our charity Facebook page) they will also use their experience and expertise to respond to queries submitted through our website here.
One of the main benefits of this volunteer service is that anyone who contacts the charity will be able to speak with someone who completely understands their own personal situation. This means that an adult with acquired nystagmus will be able to speak to another adult with the condition, while a parent to a child with congenital nystagmus will be able to speak with another parent. Through this new peer-to-peer support model we believe we will be able to better support the nystagmus community.
We hope you will join us in welcoming all ten of our volunteers to the charity and we are sure they will make a big difference! If you have any questions about our volunteer service you can get in touch with us here.
Have a great day from everyone at 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.
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.
Our third video blog has been recorded by Steve McKay who is a trustee at the Nystagmus Network! During the video Steve talks about how he took up photography and why he recommends it those people with nystagmus who are looking to start a new hobby.
One of our main objectives at the Nystagmus Network is to provide information and support to the nystagmus community. To achieve this we have been working hard reviewing all of our documents to make sure they are up to date, readily available and appeal to a wide audience.
Not only have we have produced brand new leaflets on nystagmus which we are busy posting out to eye departments across the country, we have also made all our publications for adults, children, parents and teachers free to download from our online shop here.
We want to make sure that everyone receiving a nystagmus diagnosis will know they can turn to the Nystagmus Network for support! If you can’t find any of our new leaflets at your local eye clinic, please let us know by clicking here and we will get in touch with them.
These documents cover a wide range of topics from font size to friendship, from coordination to confidence. Whether your nystagmus was diagnosed when you were a baby or you’ve only just discovered that you have nystagmus, the Nystagmus Network is here to support you.
One of our most popular documents is the newly updated ‘Wobbly Eyes’. The first incarnation of this booklet was produced back in the 1990s to explain nystagmus to a child and help them and their parents and teachers come to terms with the condition. The brand new version serves exactly the same purpose and has been designed to appeal to a child, gently outlining what it means to have nystagmus.
“As a QTVI I always recommend the Nystagmus Network to parents and schools where pupils have nystagmus. Great work at getting information out there.” – Janet
But we’re not stopping there! There’s much more to come. Your help in the form of membership subscriptions (you can sign up here), fundraising and donations, means that we will be able to continue our important work.
We’ve already begun drafting a brand new book, with the working title ‘Nystagmus explained’. Written very much in plain English and layman’s terms, this book will cover the more medical aspects of nystagmus such as diagnosis, causes, heredity and lifelong effects. It will serve to explain some of the clinical terms you may hear from your ophthalmologist and give you the confidence to engage in discussions with them.
Far from being sent home with just that one word ‘nystagmus’ ringing in your eyes, our publications will empower you to take control, build your knowledge and manage your life with nystagmus.
“Brilliant. Thank you. Been trying to explain things to my six year old” – Marilena
Our second video blog has been recorded by Sue Ricketts. Sue has been involved with the Nystagmus Network for many years and joined the charity as the Communication and Development Manager in 2015.
In the vide Sue talks about her involvement with the charity and how she has seen it grow in strength over the last twenty years!
Remember to keep checking back for the latest post!
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
We are delighted to announce that the Nystagmus Network is launching its new blog! Check out the video above which gives you all the information you will need about what we are hoping to achieve through the blog.
Remember to keep checking back for the latest post!
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.”
