Resources for teachers and parents

The school summer holidays may have only just begun, but for teachers this is the time they think about preparing all those courses and lessons for the new school year.

The Nystagmus Network understands that teachers want to be particularly geared up to support children in their class with nystagmus. That’s why we’ve produced our Teachers Booklet, full of simple hints and tips to make sure that learning is accessible for visually impaired pupils.

Here’s what one teacher says about our booklet:

“I’m about to have a child in my class with nystagmus and have been given the booklet for teachers by his parents. I’ve found it extremely helpful and clear in my preparation for the year ahead. Thank you.”

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How amazing is Amanda

Amanda is a long time supporter of the Nystagmus Network UK and our unofficial US spokesperson. As a professional freelance writer, who also has nystagmus, she is well placed to tell her amazing nystagmus story …

My Nystagmus Journey: Fifth grade diagnosis and beyond

Fifth grade – that’s when my life changed because of my nystagmus; that was the year I got my large print books and was registered as a student with a visual impairment.

Before I tell you about my reflection of that year, we must go back into my history. My mother knew something was not right with my vision from the time I was born. She took me to several eye doctors who basically said the same thing – Nothing is wrong with your child. For now she can read the print that is provided; just make sure she sits up front and rests her eyes when needed.

As I entered the school system and started to struggle with my school work, the doctors and teachers started to change their diagnosis. The first issue they found was that I had cerebral palsy; to fix this difficult issue I had all different kinds of therapy to help improve my muscle function. Then, in second grade, because I struggled with reading, writing and spelling I was found to have a learning disability called Dyslexia. This helped solve part of the problem, except for the fact that I still could not see well.

In fourth grade, the medical doctors started saying that I needed large print books and that my vision was poor. My teachers also started to really notice the problem. So, during the end of the school year, teachers started doing more advanced testing and that testing showed that, indeed, I needed large print.

My mother was so excited that her fight with the school system was successful and that I was going to receive the large print textbooks I needed. I, on the other hand, was not happy about this. I knew that I was different.

The next year came and so did the large print books. They were quite large and heavy. I surprised my teachers by being able to read better despite my Dyslexia. My grades even improved. This improvement did not come without a cost; I was teased by some of my classmates and some of my teachers were slow to understand all this new information. I still did well in my fifth grade year.

A year and a half later we moved from Texas to Florida. The school system for the visual impaired did things differently. They started taking away my large print books and they sent me to a low vision specialist who prescribed low vision aids. I was confused. The reason they did that was to prepare me for the adult world. For the first year I played their game and used my low vision aids, which made them happy. However, it made me unhappy, because I felt so limited on what I was able to see. The years passed and, in my last year of high school, I was almost rejected from the program because I was not using my low vision aids and I kept advocating for my large print when needed. During my last program interview, I told them why I did use my low vision aids. The program staff did what they could to help me until I graduated from high school.

After high school, I went to college with the help of two other programs and I was very successful. Now, with the help of the American Nystagmus Network and the Nystagmus Network UK, I’m sure I will be successful in my freelancing career and personal life.


Nystagmus and the new school term – by Elisheva Sokolic

When your child has nystagmus there might be slightly more to think about before you wave goodbye at the school gates than new shoes and homework diaries. Especially in the early years, when your child can’t necessarily advocate for themselves, it can be helpful to plan a meeting with the new teacher either ahead of time or in the first few weeks, to help form a relationship and make any extra needs clear from the outset. As a parent to a child with nystagmus, here is my own checklist of three points to discuss, but feel free to add your own!

1 – Visit the classroom before school starts

Getting used to a new space can be tricky. Can you organise to bring your child in ahead of the first day once the room is set up, so they can see the room empty of noisy bustling children and parents? This can really help them find their way around, from the sinks to the book corner, from their peg or tray to the toilets and back again. Mention to the class teacher, too, that it would help if they let you know before they make a big room change, such as moving the home corner or rearranging the outside area.

Does your child have a side they see better from, or an optimal place to sit? If so, make sure the teacher knows it before the first day, so that they can give them the optimum carpet space or desk. Will they be hanging up their own coat and putting away their lunchbox? Perhaps your child’s peg can be at the end of the row, or their tray right at the top for easy access. If the children have a spot for their water bottles, how will you make sure your child’s stands out from the crowd? Maybe a reserved spot for their water, a brightly coloured bottle or a name label with large print?

“Moving classrooms can be a real upheaval for a child with nystagmus.” – Elisheva Sokolic

2 – Access to school resources

As well as finding their way around the classroom, you want to make sure your son or daughter can access all of the resources. Large and clear wall displays with good contrast can be really helpful.

If your child is in Reception or Year 1, they will be starting to learn to read. The early reading books have large print, but as they become more confident, the font sizes get dramatically smaller-and fast! Your school should be able to sign up to which is a great resource for schools to access books electronically, so that font sizes can be increased for your child’s comfort level. There are also large print books available from RNIB. You might want to explain to your class teacher that magnifying can be useful for occasional worksheets but doesn’t always help for reading, as the image and text is often distorted or blurred by the magnification. You could try a dome magnifier, which combats this effect and which your child can use for close up work as well.

One great tip which has helped our son feel more included during carpet time is making sure he has his own copy of the book the class teacher is reading at story time so he can follow along and see the pictures. Similarly, for older years, you might find a wide screen monitor or tablet device linked to the electronic whiteboard is useful.

“What does the teacher plan to do to make sure that your child doesn’t get left behind?” – Elisheva Sokolic

3 – Explain nystagmus

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 Facbeook page here.