Nystagmus and chromosome 18q- syndrome: tips for teachers
Monday, 14 August 2017
Nadine, whose daughter has nystagmus and chromosome 18q- syndrome, offers advice to teachers supporting children with the rare condition combination.
My daughter has nystagmus and chromosome 18q- syndrome, which we found out after genetic testing. Chromosome 18q- syndrome is extremely rare, occurring in only one in 40,000 births. Of those affected, 40 per cent have nystagmus.
When you are teaching a child with chromosome 18q- syndrome, they may have more than one challenging need to be met. Having this syndrome has given my daughter extra hurdles such as intermittent hearing loss, difficulties with her fine and gross motor skills, and learning difficulties.
Nystagmus is a complex eye condition that is characterised by involuntary movements of the eye. If your student has this as well as learning difficulties, a holistic approach needs to be adopted – without forgetting the basics that need to be met for each individual condition.
16 useful tips to help teachers create a positive learning environment
Here is a list of useful tips to help you create a successful learning environment for a child with nystagmus and chromosome 18q- syndrome at school.
Sit the child at the front and centre of class (this will vary from child to child depending on the direction of their gaze and their null point).
Use larger font sizes (my daughter uses font size 24).
Avoid poor-quality photocopies.
Give them their own copy of handouts/books rather than asking them to share. This is because sharing might involve having to compromise on the position of the text in order to see clearly.
Encourage as many pre and post-learning experiences as necessary, for example giving the child extra time to look at a book to allow them to process the information. For older children with nystagmus, extra time for tests should be applied for.
Provide them with the opportunity to take learning breaks, where they can move position, relax their bodies and digest what they have been focusing on. Students with nystagmus will tire more quickly than their sighted peers.
Clutter or numerous visuals all together can be difficult for someone with nystagmus – where possible, have clear visuals and less out on display at the same time.
Some people with nystagmus are more sensitive to light – wearing sunglasses or hats in the playground can help.
Be aware of shiny surfaces that reflect light, for example glossy book pages or whiteboards can affect what the child is able to see.
Fixing, tracking and scanning can be difficult for someone with nystagmus. Fast-moving objects and depth perception (take care with stairs) can also be a challenge. Consider how this might affect children with nystagmus during certain activities, such as catching and throwing, and adapt games at play time and in PE so that all children can take part.
Adapt screens on tablets and computers to be high contrast with larger fonts and pictures.
Make sure the class lighting is suitable and install/repair blinds where necessary.
Consider the stationery you are using, for example thicker pens are easier to see on paper than pencils. Also consider the colour of the pen and paper, as blue on blue would be particularly challenging to see. The more prominent the markings, the better.
Glasses, contact lenses and low vision aids don’t correct nystagmus – but having clearer vision can help slow eye movements.
They may struggle to recognise friends in the playground – create safe opportunities for them to overcome this to reduce anxiety.
In my opinion, you should explain what nystagmus is to your other students so there is an awareness, understanding and acceptance early on – when students are not educated about a difference, there is more opportunity for bullying to arise.
Celebrate their differences and help them to feel empowered by the uniqueness of their condition. Understanding, support and acceptance from teachers and peers will assist their learning experience tremendously.
Caring in the Chaos is Nadine’s personal blog on her family’s journey and a place where parents can find a range of resources