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 … Continue reading Nystagmus and the new school term – by Elisheva Sokolic
I’m Wil Maudsley and I was diagnosed with nystagmus at three months old. From the outset my family decided that I would do everything my peers would do and I strongly believe that this has made me the person I am today. Objects do not move around with my vision, but I wouldn’t know what … Continue reading Rugby champion shares his nystagmus story!
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 … Continue reading Parents share their delight in their son’s success
Hi. I’m Lucie from Hampshire. I’m 21 years old and I’ve had nystagmus and ocular albinism since birth. I wanted to offer some comforting words to any young people or parents of young children concerned about how rich a life you or your children can expect to live. As a 21 year old living an … Continue reading Meet Lucie!
have always enjoyed sport but often found that trying to take part was frustrating due to my nystagmus, particularly with sports that require seeing the movement of a ball and connecting with it. I tried tennis a few times when I was younger but it seemed impossible. I would never be able to play it. … Continue reading Sound tennis
It’s a traumatic experience for parents when their baby is diagnosed with an unknown condition. Mine didn’t know what to do when the doctor told them that their little girl had nystagmus; but then what could they actually do? It’s just one of those things. Yet it didn’t seem like that at the time. Even … Continue reading Can people see past my wobbly eyes?
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 … Continue reading I’m the parent I never thought I’d be
I’d be foolish to pretend that secondary school was a breeze with nystagmus. There were two ways to go about it; suffer in silence, or rise to the challenge. As for me, admittedly I did both. The first obstacle was getting there, which shouldn’t have been a problem because I lived local. My mum walked … Continue reading Wobble and me (part 2)
My son, George, has congenital idiopathic nystagmus. The terminology may be familiar to ophthalmologists, but it’s baffling to anyone else. In George’s case, no one can identify a cause. So begins our story of discovery about nystagmus, what it means to those who have it, to those around them and the shocking ignorance of people … Continue reading George has nystagmus – goodbye!
The woman at the piano stopped playing. She asked me whether I liked to sing. I replied I loved singing! She told me to join in with the rest of the school then. Just because I was new didn’t mean I got any special treatment. She began to play again. I squinted up at the … Continue reading Wobble and me (part 1)