Parents Nystagmus Forum

Notes from the May 2021 meeting
Notes from Parents’ Forum – May
Thank you to everyone who joined us for the Nystagmus Network May Parents’ Forum.

Raindrops author workshops
Tim Pearce delivered a fantastically inspirational children’s writing workshop for the Nystagmus Network on Monday. The children enjoyed team writing a story, choosing the name and appearance of the characters together and even designing their slippers! You can read how it went on our blog here.

Claire Alexander, author of ‘A Little Bit Different’ will be with us next month for our final workshop for young writers. Places are FREE and suitable for children aged 7 years and up with and without nystagmus. Please book in advance to secure a place.
Thursday 17 June
4:30 – 5:30pm
Book for the Claire Alexander workshop here

The Welly Walk
To mark Nystagmus Awareness Day 2021 everyone is invited to take part in the Welly Walk for Raindrops. Whether it’s raining or not, we want you to join in the fun and walk 5k for nystagmus in your wellies on Saturday 19 or Sunday 20 June. Get the whole household along, including the dog and get sponsored.
Money raised from sponsorship of your welly walk will go towards the Nystagmus Network research fund and there will be prizes for everyone who raises £100 or more.
There was lots of discussion about when is the best time to get the QTVI (Qualified Teacher of Visually Impaired children and young people) involved. Nystagmus Network advice is that it’s never too early. Children can be assessed at home or in an early years setting and parents and teaching or support staff advised how best to help their children reach early milestones and socialise. To find your QTVI contact your local authority and ask for the sensory support team or find the details on your Local Offer.

Head shaking
Shaking, swaying or nodding the head is not uncommon in children with nystagmus. It’s thought to compensate in some way for the eye movements and may be noticed particularly when the child is trying to focus or change focus. It can be very temporary and barely noticeable or more pronounced and longer term. Just like the null point, it’s a useful way of making the most of available vision and should never be discouraged.

The Oscillopsia Simulator
Oscillopsia (see a moving image of the world) is not usually constantly present in congenital nystagmus, because the young brain has adapted to the eye movements, but it can occur from time to time, in the very peripheral vision or when a child is very tired or upset. Oscillopsia is much more common in acquired nystagmus. The team at Sheffield University Ophthalmology Department have developed an oscillopsia simulator to show what this is like. Meanwhile, the Nystagmus Network is currently working to develop a nystagmus simulation in video form.

Adapted books for children with nystagmus
Finding age appropriate adapted or large print can be a challenge. We recommend the following:
RNIB Bookshare – a subscription service for schools and families, providing school textbooks and reading books
CustomEyes by Guide Dogs – supplying any published book in your own requested size and style of font on your chosen coloured paper – at the recommended retail price of the regular book
Living Paintings – a postal library service of beautiful audio and tactile books for children

Reading windows are useful for regular books as they reveal one line of text at a time and help with scanning.

Touch typing
We chatted quite a bit about cursive handwriting and agreed that a child with nystagmus should be allowed to print their letters and use a very dark pencil or pen on their preferred colour of paper to ensure good contrast but reduce glare. Though handwriting (and reading it back!) needs to be mastered, Touch typing is a useful alternative. Talk to your QTVI about child friendly online courses. Mavis Beacon is a popular one. Once the child has mastered the basics, this is a skill for life.

The Nystagmus Network is a membership organisation. Trustees chose this model for the charity to create a virtual nystagmus community. Being a member means that you are part of a patient group and we can make our voice heard in clinical, education and research arenas.
Thank you to those of you who are already members. If you are not a member and would like to find out more, please visit the membership page of our website. Thank you.

Date of next meeting: Tuesday 15 June 8pm

Take care and I look forward to seeing you next time.
Best wishes

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