Nystagmus Network – explaining nystagmus

26 August 2016
Source: Nystagmus Network

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:

  1. He can’t control his eye movement or his head tilt – this may make him seem like he isn’t paying attention. You don’t need to try and alter his head position.
  2. His glasses and sunglasses don’t correct the vision – so, he still doesn’t see well even with them on.
  3. The eye movement is likely to make him increasingly tired – therefore he may be in need of more support in a situation which is out of the ordinary, such as sports day, assemblies or outings.

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 Facebook page here.

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