Do you support a young child with nystagmus? This free guide can help you explain their eye condition to them.
The Wobbly Eyes booklet by the Nystagmus Network offers practical advice to help you talk about nystagmus with a child who has the condition. Topics covered include going to school, being out and about, and making friends. As well as suggestions on how best to approach tackling this sensitive subject, the booklet also has answers to some of the questions a child may ask.
Transitions research by RNIB into the experiences of young people with vision impairment (VI) revealed a significant range in the quality and quantity of opportunities they had to talk about their eye condition. Where young people felt informed about their condition and had had chances to talk about it, this was reported as being helpful.
The idea of this booklet is that once a child is confident enough, they will feel comfortable talking about their eye condition. As a result, at school they will be more likely to ask for support when they need it and be able to talk to their friends about why they are a little different, helping them to combat any stigma they may face.
Nystagmus is a condition that causes constant movement of the eyes which can’t be controlled. It currently affects 1 in 1,000 people in the UK and is the most common form of visual impairment among children (Nystagmus Network, January 2018).
In an interview with the BBC, Jay Self, a paediatric ophthalmologist, describes having nystagmus as "seeing the world in strobes". The condition can cause children to struggle with seeing moving objects and make them slow to recognise faces.