parent – Nystagmus Network

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 www.load2learn.com 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:

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.
His glasses and sunglasses don’t correct the vision – so, he still doesn’t see well even with them on.
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.

Parents share their delight in their son’s success

When Maxine and Matthew Wilson’s son, Charlie, was diagnosed with nystagmus at six months old, they freely admit they went into a panic, which is probably what most parents do when suddenly faced with the prospect of their child growing up with a visual impairment. They thought he’d never be able to play ball sports or ride a bike. How wrong they were!

Charlie is now 8 years old and loves playing football, especially in goal. He has also learnt to ride a bike. In April this year Charlie amazed his parents by riding his bike for 10 miles along the camel trail from Padstow to Wadebridge. It must have been a challenging ride with lots of people cycling in front of and towards him on what is in places a fairly narrow path.

Proud Mum, Maxine, said:

“Charlie doesn’t let his special eyes stop him from doing anything. Lots of people aren’t even aware of his nystagmus. They just know he wears glasses. Keep going Charlie. We are so proud of you and love you lots.”

I’m the parent I never thought I’d be

I had always planned on being a laid back parent. My son, born with perfect vision, had been a breeze. And then my daughter entered school. Even though she had albinism and nystagmus, I assumed I’d continue being easy breezy. I would explain the accommodations she needed, the teachers would listen, and we would all go merrily on our way.

While somewhere in the back of my mind I probably knew that this was an unlikely scenario, I still wanted it to be true. No one could tell me for certain what kind of accommodations she’d need because no one knew exactly what her capabilities were. Maybe her vision wouldn’t be that bad. Or maybe it would be terrible. But I was pulling for “not that bad” and if “not that bad” turned out to be the case, then maybe we could squeak by with only minimal accommodations. And maybe I could continue being the laid back parent I wanted to be.

Preschool went well. She sat in front on the rug. Her teachers let her come up and look closely at books being read to the class. See – not that bad, this whole visual impairment thing. And then my daughter’s vision teacher suggested she take a test to see if she could qualify for the gifted program in New York City, where we live. My son was in the program already and loved it. It made sense that my daughter would qualify for the program too. I checked off a box on a form requesting a large print test, and thought, maybe that’s all she needs. Maybe we go through life checking off boxes for large print tests, and everything else just goes according to plan. But when the results came back, it was obvious that large print tests were not going to be enough.

When I called the department of education to say I thought perhaps she hadn’t been able to see the large print test, they dismissed me. Not everyone qualifies for the program, they said. Clearly I was just another pushy mother who felt her child’s genius hadn’t been properly evaluated. It’s possible that if I’d been listened to the first time I might have continued being the laid back parent of my dreams, or maybe this was the inevitable shaking I needed – someone grabbing me by the shoulders and saying: if you don’t stand up and yell for your daughter, no one else will do it.

So I stood up and yelled. And many months and meetings later, the department agreed to give my daughter the test in a digital format where she could control the size and the contrast. Lo and behold: she tested into the program. But it’s hard to be the screaming mother all the time. And by the time my daughter started Kindergarten I thought: I got this. I got the largest department of education in the country to change the way they test visually impaired children, after all. Surely I can navigate Kindergarten.

I met with my daughter’s teachers before school started to walk them through the technology she’d be using. The rules, which were new to me then but I can now recite in my sleep: she sits in the front of the class, she uses an iPad, please remember to charge her CCTV. And then one day my daughter came home and said she hadn’t been able to see her math test. So I emailed her teachers.

“But she didn’t say she couldn’t see the test,” they wrote back. “And also, she got all the questions right.”

I picked up the phone and called the teachers, and said the words that I now know I will be repeating often and for the rest of my life: just because she did well doesn’t mean that with the correct accommodations she can’t do better. I wish the cadence were better, that there was a short poem I could write or a snappy six word phrase that could convey the same information, but if there is I haven’t found it. Nonetheless, this has become my mantra.

Last month my daughter started first grade. At the meeting before school with her teachers I shared the story of the math test and the gifted test. We also discovered together that her reading level had been assessed incorrectly.

“We are navigating this together,” I said to the teachers. “If we’re not partners then it’s not going to work, and I’m going to be calling you up saying she couldn’t see something.”

I don’t know if I came across as an overlycrazed helicopter parent or not, but I don’t care. This is the kind of parent I am now. The next week, when my daughter came home from school with a book at her correct reading level, accompanied by a CCTV and a note from her teachers asking if I might be able to download the book to her iPad, I knew that this is how it will be from here on out. I can luxuriate in being laid back with my son, but when it comes to my daughter, I’m the parent I never thought I’d be. And I’m okay with that.