Having just released my book “Can I Tell You About Nystagmus?” I jumped at the chance of being able to raise the awareness around the condition, in support of Nystagmus Awareness Day, 20th June 2019.

For those who don’t know, nystagmus is an involuntary continuous wobble of the eyes. During your time teaching, it is likely you will come across a child who has nystagmus, as it is one of the most common forms of childhood visual impairment. It affects approximately 1 in 1,000 people. It can either be congenital (from birth) or acquired. Those with nystagmus have a ‘null point’ or a point in which their eyes wobble less. This can cause them to have a head tilt in order to gain the clearest view possible. There is NO cure. Therefore, having a broad understanding and a host of helpful strategies will help you and your students.

When I was planning this article I sought some advice from Sandy Turner, Headteacher at the primary school, The Link. Sandy and her school had recently been host to the launch of the aforementioned book, “Can I Tell You About Nystagmus?” where she and her staff engaged in some live training with me about the condition. When I asked her what might be most helpful for early years practitioners, she emphasised the importance of considering the fact that the curriculum is taught through play and games in a free-flow environment.

So with this in mind, I’ve compiled 7 nystagmus hacks you can use in and around your setting whilst teaching the children in your care.

  • Position: Always, always, allllllways (you catch my emphasis?!) position a child in the most comfortable way to accommodate their null point. Do not sit them at the back and do not expect them to share books.
  • Triggers: Nystagmus can change across a day - things that make Nystagmus worse are: stress, tiredness, fatigue, illness and excitement.
  • Playing: Physical games that require hand/eye coordination can sometimes be a challenge. Games such as football or catch can be challenging as judging depth and speed is a huge challenge for those with nystagmus.
TIP: Consider adapting the games, e.g. oversized balls or brightly-coloured balls or reducing the number of participants to make a slower and more visually-clear way to play games that require hand and eye coordination.
  • Clutter: In early years environments, free-flow and daily environmental changes for activities, can be hard for someone with a visual impairment. Often the skill of memory is used to be able to navigate familiar environments and so areas that are packed with different toys and activities can lead to something called ‘crowding’, in which it becomes hard to visually see everything. This can frustrate and lead to impacted play as they may not be able to see what they want.
TIP: Limit clutter and give adequate processing times. Pre-select a few toys and show them away from the clutter so they can choose what they want without getting overwhelmed. Give them more time to react and process.
  • Body language: Some people with Nystagmus can find it difficult to give eye contact, which might be misinterpreted by others and could impact on social interactions with peers.
Tip: Don’t emphasise the need for front-facing eye contact - especially for school photos! Let them look at the camera in the most comfortable position for them.
  • Fatigue: Having wobbly eyes can make some with nystagmus fatigue very easily. nystagmus fluctuates throughout the day with its intensity. Having a quiet or less-busy area available to the child for them to play in if they get fatigue, increases independence and coping skills across the day.
  • Safety: Nystagmus can affect depth perception - so think stairs, steps and changes in flooring, which could be harder to see and navigate. This can affect judging speed - so think about children rushing around them or balls being thrown at them in P.E. and being able to react. On school trips, be aware that new environments can raise anxiety, unfamiliar faces, places and information having to be processed. This can affect nystagmus making it worse and increasing fatigue. Lots of pre-visual and auditory explanations can reduce this. Factoring in breaks and finding quiet areas to relax in, can be beneficial too.

These are just a few ideas to help you better support children with nystagmus as well as other visual impairments. Within the book, there are many more helpful ideas, as well as a handy checklist to make sure you are set each term! You can grab a copy from Amazon and other online retailers. For more information on the book, or if you would like me to come and visit your school, visit nadineneckles.co.uk for more information.

Nadine Neckles, is a special needs blogger and life coach who has written for leading disability charities including Carers UK, Caring in the Chaos and Firefly. She is also mum and full-time carer to her six-year-old daughter who has nystagmus and Chromosome 18q- syndrome, a rare genetic condition. She is the inspiration behind her first book “Can I Tell You About Nystagmus?”.

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