Monday Focus on Facebook

Every Monday over on our Facebook page we focus on a particular nystagmus-related topic to get the week started with a great conversation.

Topics we have covered so far have included null point surgery, driving and nystagmus, talking to you child about nystagmus and whether or not to have cataracts removed when you have nystagmus.

Anyone can join in the conversation and share their thoughts, questions, experience and point of view.

Nystagmus Network launches new publication on nystagmus and driving

Whether or not people with nystagmus can drive is probably the most frequently asked question the charity receives. Because nystagmus is such a complex condition and affects everyone differently, there is no definitive answer. In our new publication, Nystagmus and Driving, we address all the issues, answer your questions and signpost to free and concessionary alternatives.

My bouncing eyes baby!

Hello, my name is Charlotte and I am mother to a ridiculously delicious six year old girl named Scarlett. In every way Scarlett is a picture of happiness and joy. She needs very little to keep that big smile spread firmly across her angelic face, literally affection and biscuits will do the trick! I am very proud and also very lucky to have Scarlett in my life. Each day she is just a mass of love and giggles, always with a song to sing.

Scarlett, despite being pleased by the simple things in life, is medically very complex. Diagnosed at four and a half months with Optic Nerve Hypoplasia, Scarlett has no useful vision. When she was first born I do recall the frequent movement of her eyes. I also remember telling myself it is because she is curious, she is taking in the world, or whatever subject was trying to grab her attention,but this just didn’t quite cut it. I told myself that for many weeks, until one day yet another person highlighting the fact that Scarlett’s eyes never really fixed on anything and constantly danced around became too much to ignore. I took her to Bolton Eye Hospital for further investigation. We were told that her eyes moved around due to Nystagmus and that her sight was affected due to an under development in her optic nerve and that perhaps her sight may improve slightly, but I was relieved to find it would not deteriorate any further. Due to Scarlett’s age we did not know what sight she had, if any.

As she has grown older, Scarlett has given us no indication that she has any sight. She has additional needs which affect her social interaction and communication and her learning. Therefore, she has yet to confirm if she sees anything through her big blue bouncers. I suppose I have become accustomed now to the unknown: whether she can see, whether she can talk, whether she will ever function cognitively at a level appropriate for her age. Of course I get asked, by family, other children and strangers. I have also become accustomed to saying ‘I don’t know’.

Despite the complexity of my daughter and the gorgeous enigma that she is, I can say one thing for sure that she is truly happy. She has no awareness that she is any different and exists within a beautiful bubble all of her own.

Through being the parent of such a special little girl I have been on lots of adventures! My involvement and my full time job is running the online support and information network for charity VICTA Children.

Throughscarlettseyes.com was born out of my desire to want to help and seek support from families who were also raising visually impaired children. The network/community has been live now for three and a half years and continues to grow every day. Not only do I share my own personal experiences about Scarlett, but I offer an online platform to parents, carers, professionals, charities and organisations and people with a visual impairment to publish anything they wish! This has been a great experience for me and I have met many fantastic people along the way, people who have helped during the hard times, inspired when you feel like you are standing still, been a shoulder to cry on and I’ve heard some exceptional stories from which I have found such strength.

I have learnt that you might not always know what the future may hold, but that’s okay as no matter what plans you lay or expectations you have, you only have this one moment and you need to keep pushing to make it the best moment yet.

An inspiring story about passing exams!

We wanted to begin 2017 by sharing a good news story by Meg Tatton which we hope will inspire other parents and show that there should be no barriers in the classroom.

Meg’s ten year old daughter, Lily, has recently passed an entrance exam and won an academic scholarship thanks to the support she received from Nystagmus Network Trustee and Education Advocate, Frances Lilly and Rory Cobb of the RNIB.

When Meg first approached the school and the QTVI, there seemed to be little advice or information available about adaptations and support for Lily to take the test. Could it be that some teachers do not expect children with a visual impairment to have aspirations to become academic high flyers?

What began as a two paragraph note from the QTVI about, among other things, blowing up the test papers on to A3 paper, ended as a four page document of detailed instructions on how different parts of the examination, including a multiple choice test on the computer, could be adapted and made accessible for Lily, in particular being printed on manageable A4 pages, giving her an equal opportunity to succeed alongside her fully sighted class mates.

“The opportunity to discuss the exam with Frances and Rory was invaluable. I could voice my concerns and they helped me to identify issues and offer suggestions/solutions to the school. It also gave me the determination to make sure that Lily had an equal chance when sitting the exam.” – Megan

Lily is a confident girl and was not sure that she would need the 25% additional time she was entitled to. This is not uncommon among VI students who do not want to appear to their friends to have any kind of special need. Like many other parents, however, Meg managed to convince Lily that the time could be very useful to her and could be used to check her answers and make sure she had not missed out any questions.

On the day of the test Lily triumphed. There was a slight hitch with the computer screen and Lily admits that she may have had to guess the answers to a couple of the multiple choice questions, but she passed. This ambitious young lady is now set on a path of high academic achievement thanks to her Mum, the RNIB and the Nystagmus Network.

If you or your child have a similar experience to Lily and Megan, or would like to share a story with the nystagmus community please get in touch with us!

Discovering your baby has nystagmus

My daughter has congenital idiopathic nystagmus. Idiopathic means that despite having every test available no physiological cause can be found. Congenital means that it was either present at birth or very early on in life.

I think I can pinpoint the day her nystagmus arrived. Lying on the rug in the picture above she is 6 weeks old. She stares straight into the camera and at this age she was already tracking the flowers in the garden wafting in the breeze above her head.

Yet at her very next baby clinic check up a few weeks later her eye movements and lack of control of her direction of gaze were already so pronounced that the doctor panicked and told me she thought my baby was blind.

We were given an appointment at the ophthalmic hospital and the rest is history: a diagnosis, marking the beginning of a lifelong journey where we didn’t know what the destination would be.

“I think I can pinpoint the day her nystagmus arrived.”

So what happened? I really don’t know and can never be certain, but my calm, contented baby girl suddenly became fractious and agitated and couldn’t be pacified on one particular day.

She was just 9.5 weeks old. We had gone to the zoo as a treat for her big brother. It was a very bright sunny day. It soon became clear that my daughter was not enjoying the trip. She started to scream and couldn’t calm down. She wouldn’t feed. She wouldn’t be cuddled. She couldn’t settle in her buggy or even in the car on the way home.

When we got home we bathed her, but she was still screaming. We tried to feed her, but still she screamed. We put her in her cot and closed the curtains against the bright sun and finally she slept, exhausted. From that day on her eyes were never the same. She was calm again, but the nystagmus was there, manifesting itself with wide, sweeping eye movements and a marked head turn evident as soon as she began to sit up.

What happened to cause the nystagmus or was it there all along? Could it really just have been a reaction to that bright sunshine? What switched inside my little girl’s brain? Is this really how her nystagmus started or just the way I remember it? So many unanswered questions, even today. And that journey to the unknown destination? We’re still on it … together.

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My beautiful baby girl is now a gorgeous, happy, successful and charming young woman. OK, so I’m biased! But she certainly never lets nystagmus get in her way.

The shock of being told that there is something wrong with your child’s eyesight never goes away. Because every case of nystagmus is different, it’s difficult for the medical profession to give a truly accurate prognosis. Left with more questions than answers, parents sometimes flounder with only one option: wait and see.

So where can anxious parents turn for help and support? In my case it was the Nystagmus Network. Their Facebook page makes it possible to communicate with the whole nystagmus community. There’s also a whole army of nystagmus ambassadors out there in the blogosphere: articulate young people who tell it like it is. Writing for their peers their words bring invaluable hope and understanding to parents, too.

So, parents, make use of all the resources, literally at your fingertips. We’re all on the same journey and we will get there. We don’t just have to wait and see any more.

“We’re all on the same journey and we will get there.”

Peterborough Community Radio interview

This week the video blog at the Nystagmus Network features our very own Sue!

The video is her interview with Peterborough Community Radio which is hosted by one of our very loyal and long standing supporters Tim Heywood. Sue and Tim discuss the Nystagmus Network, nystagmus and Wobbly Wednesday.

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Sign up to ski!

We are delighted to announce the final dates and times for our skiing taster sessions for members of the Nystagmus Network!

There are three different venues offering the group sessions and these are listed below. You can sign up by completing the form at the bottom of the page.

Beginners

Hemel Hempstead – 23 November at 6:30pm to 7:30 pm
Castleford – 4 December at 4pm to 5pm
Milton Keynes – 11 December at 11am to 12pm

Each of the sessions costs £10 one hour. Please turn up an hour before the session to collect and fit your equipment.  Ski and helmet hire is included in the price. Ski suits can be hired for an additional charge.

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Do you want to ski like Josh?

Our son Joshua was born with oculo-cutaneous albinism in 2003. It was a surprise to both our families as no one on either side had any recollection of anyone in the family having albinism.

The thing that has affected Josh most is his visual impairment. His eyes let in too much light due to the reduced pigment and he has nystagmus.

Josh was diagnosed aged 2. We had no idea there was anything wrong. We wondered why his eyes moved from side to side but he had coped perfectly as a toddler, learning to do everything when he was expected to and generally being loud and laughing a lot.

“Where have been some mile stones in our 13 year journey so far, with many more to come I’m sure!” Jamie Fuller

The key for us is to build strategies for situations and approach everything with a ‘how can I do that?’ attitude.  Yes, we have to modify and adapt, but most of the time it works and even if we don’t ever do it again at least he can say ‘I’ve done that’.

We are now two years into senior school and Josh is in top sets for everything. He no longer has support in school and is fiercely independent. He uses an iPad and his teachers are aware of his needs.

The one area that remains difficult is team sports.  From an early age we never discouraged team sports, but directed Josh towards sports he could do with a group of people rather than in a team.  At the age of 9 Josh achieved his black belt in Tae Kwon Do. From a very early age he could swim like a fish. He has dabbled in other sports like kick boxing, but his main and true love has always been skiing.

Josh learnt to ski on family holidays from the age of 3 and immediately enjoyed the freedom and speed that came with it.  Year after year he became more competent and about 2 years ago he asked if he could race in competitions.

“All the things Josh can’t do well evaporate the moment he gets on the slope.” Jamie Fuller

Josh skis with me as his guide.  We communicate through headsets with me describing the terrain, the direction and obstacles to avoid.  Getting into competitive skiing was difficult. We approached our local indoor ski centre but they were, at that time, unwilling to take a visually impaired person in their classes. We then approached Disability Snowsports. We joined them every month for a recreational session but this was not enough for Josh, he wanted to race!

Through contacts at the organisation the Paralympic Team GB Coach became aware of Josh and after many meetings, tests and discussions Josh was advised that he was not visually impaired enough to be classified by the IPC.  So what now? Not visually impaired enough to be trained by that team and too visually impaired to ski without a guide.

We approached the ski race team at our local ski centre and asked if we could join them. We explained the situation, and they were very accommodating. Finally proper slalom race training began.  Training is great, but Josh still wanted to race! Many emails later and with the help of lots of other enthusiastic people we are now racing in able bodied competitions. We have to abide by their rules and Josh doesn’t get any allowances in time for his visual impairment, but he regularly hits middle of the group for his age, something he is very proud of and something that boosts his confidence.

We have seen Josh progress at such a rate through skiing. He can’t ride a bike at 10mph and yet he can ski at 40mph easily and freely.  Although Josh is awesome he is not alone, we ski with several visually impaired skiers, some far more impaired than Josh and they too experience freedom on snow.

“So there is something in this. I urge you to come and give it a go!” – Jamie Fuller

Do you want to learn to ski?

We have organised a few trial days for complete beginners and some sessions for those who already ski and would like to improve.

Learn to ski from just £11 per hour in Manchester, Hemel Hempstead, Milton Keynes or Castleford.

If you can already ski, string several turns together and stop confidently, we can offer monthly sessions of 1-2 hours for around £15 for you and your skiing guide.

Please contact us here to register your interest and we’ll let you know when and where.