Parent stories – Page 2 – Nystagmus Network

Sharon’s nystagmus story

This Nystagmus Awareness Day we’re asking you to share your story.

You can share your nystagmus story here

This is Sharon’s story …

My nystagmus story started October 2017 when my son was 10 weeks old. He just hadn’t seemed right all day, refusing to feed. I’d taken him to the GP. Fairly happy with a mild urine infection we were getting up to leave as the GP suddenly asked me “Do his eyes always do this movement?” I couldn’t be sure I’d ever noticed and, if I had, that I’d realised it wasn’t normal for a young baby. 30 mins later, scared of what was happening, we were in the hospital undergoing various tests, including an emergency CT scan as doctors feared brain damage was causing the nystagmus – a word I’d never heard of but have spent many hours googling since. After a painful 24 hours we were given a diagnosis of most probably just a visual impairment.

Thankfully a month later a MRI ruled out any brain abnormality.

It took another 2 years of appointments at St James’s in Leeds and with Professor Gottlob’s team in Leicester before genetics confirmed oculocutaneous albinism, type 1b. Although we were told this was a likely diagnosis at our first eye appointment, having the confirmation felt like a huge milestone to recover from the stress caused by that first day of our journey. With many health issues and hospital admissions early on, HPS (Hermansky-Pudlak Syndrome) was considered but ruled out in January 2020 just before my daughter, who doesn’t have albinism, was born.

We met our QTVI 2 months into our journey who invited us to their fortnightly VI parent and child group, a group I’ll be forever thankful for. I struggled to relax in baby groups where my child was noticeably behind his peers by this point and we did struggle to put the stress of that first 24 hours behind us. This group gave me the space to talk about that. I’m so happy to have been able to give something back to this group when, during covid, I and my children helped them record videos of activities to send to new families who had been referred to them when home visits and support groups were not allowed. I couldn’t imagine not having this group in our early days.

I found the Nystagmus Network during my many hours of googling and attended the Birmingham open day where I learnt so much about nystagmus and met other families just like us. From that day I always knew I’d want to be more involved in the charity and use skills I have from my work in something that means so much to our family.

The journey so far hasn’t been easy in many ways but I’ve found it’s always full of surprises that I’ve least expected including my son being 1 of 2 children with nystagmus in his class at school and overcoming gross motor delays, thanks to help from OTs and physio, to learn to ride a bike unaided at age 4. Being in second year at primary, we’ve got a long way to go and I’m sure there will be many more mountains to climb along the way but when I look back to that first night nystagmus was mentioned to me I can’t believe how far we’ve come.

James, wearing sunglasses, smiles for the camera. His wife stands beside him holding a small child wearing a blue T-shirt.

James’s nystagmus story

This Nystagmus Awareness Day we’re asking you to share your story. This is James’s story.

You can share your story here

Until my son Sullivan was born, we as a family had no idea what nystagmus was, that there was a charity called Nystagmus Network and a wonderful community available for support.

We noticed within a few weeks of Sullivan being born that something wasn’t quite right with his eyes. After several doctors and hospital appointments and being told repeatedly ‘‘He’s only a baby, stop worrying’’ we finally found out Sullivan has nystagmus, with ocular albinism.

Receiving this diagnosis was hard to take. As a parent you want to do everything you can to protect them. You also have the initial shock which clouds your rational thinking – which is something I have noticed through the Nystagmus Network forums. Panic is the first reaction which is only magnified once you turn to Google – Never turn to Google!

As a few weeks passed and further appointments were made at Moorfields Eye Hospital with the incredible Maria. Maria is unbelievable. She was available for video calls and in person appointments – Maria has also supported Nystagmus Network events, so something to keep an eye out for!

Our story with the Nystagmus Network started with the Facebook Parent Forums, which provided our first chance to speak with other parents with children with Nystagmus. Its hard to explain how beneficial that was and still is today! Once meeting some of the trustees and most importantly Sue, I decided to focus on local fundraisers in Jersey with an annual Nystagmus Golf Day and I’m now proudly a trustee.

Sully is now 3, due to start pre-school this September and primary school the year after. It’s from there I feel his struggles will be more noticeable. But we will deal with them as they come. This is only the start of our nystagmus story with great things to come.

If anyone with Nystagmus is to read this, then please get in touch with the charity or myself directly!

James

New research explores parental experience of their child’s diagnosis

What is the psychological impact on parents immediately following a child’s diagnosis of congenital sensory impairment?

Rebecca Greenhalgh, Trainee Clinical Psychologist at Coventry University is leading a new research project, funded by Coventry University, School of Psychological, Social and Behavioural Sciences, designed to gain a better understanding of parents’ experiences immediately following their child’s diagnosis with a sensory impairment. It’s hoped that this information will help medical staff, midwives, psychologists and social workers provide better support during the period of the diagnosis.

The research was granted ethical approval by Coventry University’s Research Ethics Committee.

Participants will be interviewed by the lead researcher and be asked a number of questions about their experiences of receiving their child’s diagnosis of congenital sensory impairment, including speaking about how they felt at the time, what their thoughts were and their immediate reactions.

The interview will last between 60 and 90 minutes and will take place either remotely via a secure online platform, or face to face, according to participants’ preferences.

If you would like to take part, please contact the lead researcher Rebecca Greenhalgh (see contact details below). You will receive participant information and be asked to complete a consent form before taking part.

Researcher contact details:
Lead Researcher
Rebecca Greenhalgh, Trainee Clinical Psychologist
Email: [email protected]

Thank you, Nadine

Thanks to her book ‘Can I tell you about nystagmus?’, children and their parents feel better able to explain nystagmus to others. In 2020, with the country in lockdown and schools closed, Nadine came up trumps again with advice and tips for parents struggling with homeschooling.

Most importantly of all, Nadine allowed us to let go of the guilt and just enjoy spending more time with the children. You can read all Nadine’s handy hints here: https://nystagmusnetwork.org/homeschooling-and-nystagmus/

Nadine, you’re a hero, but you’re also human, just like the rest of us.

Thank you!

This year has been a difficult year for us all, but Giving makes us feel Good! #GiveBack2020 is your chance to take something positive from 2020 and make a difference at the same time! Please volunteer, fundraise or make a donation to the Nystagmus Network for #GiveBack2020

Fundraise for the Nystagmus Network here

Contact us here to volunteer

Please make a donation here

THANK YOU

Homeschooling and nystagmus

A Guest Post by author and nystagmus Mum, Nadine Neckles

So the world has turned on its head and what we once considered normal and safe has morphed into anxiety inducing, mask wearing, groundhog day feeling ‘normality’.

COVID-19 has changed a lot of what we do and how we do it, including how and where our children are taught.

2020 the year of vision, has been a real eye opener

Entering into lockdown I had big ambitions. I would replicate school as closely as possible. There would be structure. Each day, a bit of maths, English and therapy. My daughter, who has nystagmus, also attends a specialist school as she has learning difficulties and thus therapy is a BIG part of her curriculum.

It started off promising, with bundles of enthusiasm from me. I got to play, being ‘teacher’ at ‘Mummy school’ and I secretly loved it! But by Wednesday of the first week (yep, the first week) I was already drowning. Literally, not just by the reams and reams of paper I’d over zealously printed off, but in managing my child’s needs.

I’d done what I’ve done many times in the past and forgotten (or not considered enough) the impact of her visual impairment and other needs on her whilst at home.

After 30-40 mins in the morning she was done. Finished. Not able to do anymore schooling. This didn’t fit into my plan of teaching at least 4 hours. It also meant this tiny window of opportunity to teach had to be masterfully crafted to fit with her baby sister’s nap time.

Said sister is not one to follow my meticulously planned teacher timetable and I found myself running up and down trying to help them both at the same time. So, I needed reinforcement and thus the substitute ‘teacher’ Miss TV was brought in.

Curated TV shows were picked in an attempt to allay my guilt at not being as present as I wanted. But, just as a ‘solution’ was found, more challenges arose.

TV was adding to her fatigue. The iPad was the same. Screen time, although a great tool, was making her eyes more tired.

By the afternoon she was over stimulated. Her sensory issues seeming to grow each day. Chewing her clothes, shoes, hairbands indiscriminately. Her temperament was also changing across the day, getting more and more irritable.

I tried introducing playtime in the garden on lovely days, but very quickly she would ask to go indoors or stay outside whilst hovering in the available shadows.

I had to evaluate what I was doing and how I could change them to better fit for her.

My ‘ah ha!‘ homeschooling moments

Work around her. If she’s up for some activities run with it. If she doesn’t want to do P.E with Joe Wicks at 9 in the morning, it’s fine. Let her chill out!

Keep things simple. I was going wrong trying to emulate school. First of all, I’m not a teacher. I don’t have the patience or the enthusiasm at 9 in the morning to bring the energy or creativity needed each day. If I was showered before 9 I was winning!

Instead of trying to do everything each day, just pick one thing and chunk it.

10 mins playing with the abacus (yes she prefers tactile visual 3d objects when learning maths). 10 mins on the computer later on. Mix it in with play with her and her sister and bingo you have 30/40 mins of maths done.

Use your child’s interests. My daughter loves pretending to be a superhero and so ‘Mummy School’ used this as a motivator. We typed (font 24) together on the computer, to write lyrics to a superhero song.
We made up a superhero story using key words.
I sent her on missions around the house finding key objects, getting her to use her vision more specifically.
We played target ‘shooting’ number games in the garden.
We treasure hunted with key phonics sounds and she loved it.

It’s ok to move away from academic learning. Let go of the guilt!

My daughter clearly needs reassurance in these times. On a trip out to the park a passerby prompted a scared exclamation from her that she was ‘scared of people’. Being inside and kept away from friends and family was having an impact on her I hadn’t imagined. Indoors she’d seemed fine and at ease with our explanation about COVID-19, but how this manifested in a small child’s mind was, in fact, worry. So a deliberate decision as a family was made for daily trips out. Less emphasis placed on following the curriculum but more on her wellbeing.

Less is more

TV is great but it needed to be limited and thus Miss TV could only come to ‘teach’ after lunch. Having the morning free of screen time gave her space to feel … bored. And though this can be incredibly annoying for us parents (as we are normally the boredom ‘slayers’) what has transpired for us was a growth in her independent play.

Their eyes get tired. We know this, but I know I do forget in the whirlwind that is life. Being home during lockdown, I’ve seen more often my daughter’s wobble get more and more pronounced as the day goes on. She has always had a mild head turn but it has definitely accentuated in these times. She needs time to rest.

Stop helping so much

One thing I’ve learnt is that in my effort to support my daughter I also facilitate things too much for her, so she has grown used to always asking for help instead of trying to overcome the challenge herself.

Perseverance is a skill and very much linked to confidence. Being comfortable with getting things wrong is also very much part of our children’s journey.

As a parent of a child with needs, I always wanted to mitigate her feeling of helplessness. I wanted her to always feel she can ‘do it’ even if she needs help.

By sometimes putting in help prematurely, I’ve limited her chances in developing resilience and self confidence.

This lockdown has shown me that this is a key thing she needed to learn alongside her academic attainment.

Please don’t misunderstand me. Always have things in place that allow your child the best possible chance to access their work comfortably. But, separately, also encourage their own desire to work things out on their own.

The lockdown isn’t over and, while easing might be slowly coming in, we’re still far away from normality. This time has been revealing and a time I’m thankful for. There’s still enough time for further revelations but I will leave that for another post!

Key considerations during lockdown:

Keep a diary of any changes or concerns regarding your child’s eyesight. Although hospital appointments might not be happening as regularly, still speak to an ophthalmologist if you have any concerns that you feel can’t wait. Also keep in touch with your child’s QTVI who can provide help and support with homeschooling during this time.

Nadine is the author of ‘Can I Tell You About Nystagmus?’

A friendly guide, featuring a girl called Amber who explains all about her ‘dancing eyes,’ or nystagmus. Amber explains how children with nystagmus might need to read, learn or play differently, and what their families, school and friends can do to help.

Purchased your copy of Nadine’s book from our online shop.

Jeans for Nystagmus Genes: Delilah’s story

Delilah’s story: Delilah is helping to raise awareness of children’s genetic disorders with the UK children’s charity Genetic Disorders UK and their annual fundraising day, Jeans for Genes Day. This year, Jeans for Genes Day runs from Mon 16 – Fri 20 September and invites everyone to wear their jeans to work or school in return for a donation www.jeansforgenesday.org

When Delilah was four months old, her mother Sarah noticed a tremor in her eyes. The baby went on to be diagnosed with nystagmus, a complex visual impairment causing involuntary eye movements and affecting vision.
Delilah is lively and confident but her parents sometimes worry because her depth perception is limited, which means she may be more likely to trip and fall.
There’s no cure for nystagmus and Delilah’s parents aren’t sure how it will affect her in the future but at the moment nothing stops her – she loves princesses, camping and dancing.

Four-year-old Delilah was diagnosed with nystagmus, a congenital disorder affecting the eyes. As is often the case with children with the condition, she was diagnosed after her mother, Sarah, noticed her eyes appearing to ‘wobble’ – she also has a retinal fold. Delilah’s a happy, confident little girl who loves school, dancing and outdoor activities – but she does have some visual impairment and there’s currently no cure for nystagmus.

All seemed well when Delilah was born. But when she was around four months old, her mum Sarah, 45, who owns a cleaning business, noticed her daughter’s eyes were moving around randomly. ‘I had no comprehension what it was, but when I spoke to family members they said it was just a baby’s development and she was trying to focus,’ says Sarah. ‘But my mother’s intuition told me to check it out. So we went to local children’s centre to see their ophthalmologist a couple of months later and they said she had nystagmus.’

Sarah and her husband, Rob, 48, who is in the police force, had no idea what that meant. ‘We both wear glasses for reading or seeing telly but that’s just age-related and nobody in our family has anything like this.’ From that moment, the couple went on a huge learning curve.

‘It was scary at the start,’ says Sarah. ‘The opthalmologist wasn’t a specialist in nystagmus so all he could advise was not to google and to wait for a proper appointment. But of course we looked it up and found the Nystagmus Network.’ Sarah and Rob felt disheartened they had been left to learn about the condition themselves. ‘The children’s centre just sent out a general blurb, which, scarily, focused on blindness, but we later found out that wasn’t right. At the time, though, that really scared me.’

The family began to get more involved with families affected by nystagmus so they could learn more about the condition. ‘It was so hard to know what was going on – was she taking longer to reach milestones because of nystagmus or was it all just part of her?’ Sarah says.

It was when Delilah was referred to Manchester Eye Hospital that she began to receive more individualised treatment. Doctors there diagnosed retinal fold – an abnormality in the retina caused when a blood vessel is left behind when the eye is developing in pregnancy. By the time of birth these have usually disappeared but sometimes the vessel is left, and in Delilah’s case it’s attached, giving the appearance of a fold, and making her vision in the left eye very limited.

‘The doctors at Manchester helped us see Delilah as her own person with her own condition,’ says Sarah. ‘They carried out lots of tests to check the connections between Delilah’s eyes and brain and that was all fine. They prescribed her glasses, which have helped a lot. And in fact her eyes don’t shake as much as when she was little, although I notice the tremors more when she’s tired or stressed.’

None of it stops Delilah, though. ‘She is a rocket – she does everything at 100mph,’ laughs Sarah. ‘It’s so funny because her older sister, Lola, is a lot more cautious. She’ll be thinking about it and Delilah will have already done it! When she started school we found her depth perception wasn’t brilliant, which means she might not always see steps. On the one hand, it’s great she’s so confident, but we have tried to help her learn to look around first and take care. The school have been great – they’ve painted the lower stair rails bright yellow to give her something to focus on.’

Now Delilah’s reading and colouring in, the family have found it helps her to have a book propped up on a reading slope so she doesn’t have to hunch trying to focus. And she has a visual support worker who goes into Delilah’s school to advise.’

‘We don’t know what the future holds,’ says Sarah. ‘It’s rare for someone with the condition to learn to drive but who knows where we’ll be in the future. She may need bigger fonts when reading and so on, but until she’s doing it we can’t pre-empt it.’

But right now, nothing stops Delilah. ‘She loves dancing, drawing and singing, and is really energetic and outdoorsy,’ says Sarah. ‘She can’t wait to go camping in the summer. And she loves princesses!’

Jeans for Genes Day raises money for Genetic Disorders UK, the charity that aims to change the world for children with genetic disorders. Funds raised will go to the vital care and support they need.

Jeans for Genes Day is from Mon 16 – Fri 20 September and invites everyone to wear their jeans to work or school and make a donation. Sign up for your free fundraising pack at: www.jeansforgenesday.org.

Nystagmus Network is a Jeans for Genes Day 2019 grant charity. Our grant funds an activity day for children aged 5-15 with nystagmus. Children from across the UK will attend a day of creative play, looked after by adult facilitators who understand the condition, how it impacts on both vision and social interaction.

Little Amber – there to help

Nystagmus Network’s Rachel, writes:

Here at the Nystagmus Network we’re always looking for new opportunities for our members. Recently we came across a charity awarding grants to blind and partially sighted children for music lessons.

The Amber Trust offers grants for singing or instrumental lessons, music therapy and concert tickets to children aged 5 and over. They also offer ‘Little Amber Music Awards’ for under 5s. As a parent of 3-year-old twins with nystagmus, this was particularly interesting to me!

Both my boys have shown a keen interest in music from a very young age. They spend a large part of each day singing, playing their toy guitars and putting on ‘shows’ for their little sister.

We applied for the grant for both boys and heard back within a couple of weeks that they have been successful. We’re now very excited for their first interactive session. They’ll now receive 4 sessions a year until they turn 5, as well as some tips and suggestions for activities we can do at home in between.

We will keep you posted!

Guest post: Harry’s back at school!

Over the summer holidays we followed Harry’s progress as he underwent the Anderson Kestenbaum procedure to address the head turn associated with his nullpoint. Today we hear from Harry’s Dad, Ian, how Harry is getting on, 4 weeks after his operation.

Ian writes:

“Harry’s eyes are now nothing but a slight irritation and, apart from eye drops 4 times a day, he doesn’t need any pain relief. Other than a bit of redness around the edges, his eyes show very little sign of the trauma they’ve been through. Harry says they’re still itchy. This is because the stitches still haven’t dissolved and they won’t until around 8 weeks post op.

“Harry’s vision is on a par with pre-op which is really pleasing. He still needs to wear glasses, but now minus the prisms.

“We attended a meeting yesterday with the consultant. 4 weeks post op he was delighted with the healing process (Harry is about 80% through the recovery) and with the results of the operation. I have to say my wife and I and, even more importantly, Harry are delighted with the outcome, too. Harry doesn’t need to see the consultant for 6 months now, so, in effect, he’s signed off.

“The photo was taken the day before his meeting with the Consultant, his first day back at school. You will see he’s looking straight at the camera.

“Even though we had taken our time and researched and thought we knew what to expect, seeing your child going through this surgery is tough. The first few days, in particular, are not nice. There’s the uncertainty over the success of the operation and the torment of seeing your child suffering (Harry was a very good patient). On the Sunday after the operation, when Harry expressed some concerns, we found it really difficult. You start doubting whether you’ve made the right decision and question whether it would have been better to leave well alone. So I don’t want to make it sound likes it’s been a walk in the park, it really isn’t. However, when you see photographs like this, with a beaming smile looking straight at the camera then it does make it feel it was worthwhile.

“Whilst this has been a roller-coaster of a journey, we’re so pleased we have done this. I also know this won’t work for everyone. I just hope Harry’s experience can help others, considering this course of action, understand just what it entails.”

The Nystagmus Network does not endorse or otherwise any particular medical treatment. We are simply sharing one family’s experience. We are grateful to Ian and Harry for sharing their story so generously with us and we wish Harry well as the new school term begins.

Guest post – Harry’s recovery from surgery continues

Harry and his family continue their post surgery journey.

Ian writes:

On day 7 after the op Harry is able to open his eyes for longer periods, the blurry vision is settling down and he is able to see much better. He is still having to have eye drops 4 times a day for the next month and is taking pain relief still. He is really positive about the outcome, although he is a bit bored, spending his summer holidays stuck in the house.

In terms of the pain, Harry has been really brave and coped with it well. I would say that during the first 2-3 days he has been in a lot of discomfort, particularly when trying to open his eyes. Now he would describe it as an ache and a more irritating, itchy feeling (the stitches in the eye). Trying to stop him rubbing his eyes has been a challenge.

After 13 days Harry is able to open his eyes pretty much as he did prior to the operation. The soreness around his eyes has calmed right down. He is still a little bloodshot, but his eyes look so much better than they did the first 7 days. Harry has commented that the pain (which is bearable and more of an ache) is less at the front of his eyes, but more of an internal ache from the back of the eye.

His vision is settling down and he thinks it’s now similar to pre-op, but looking straight ahead.

Harry is getting used to a change in his peripheral vision, following the change of eye position. The consultant said this is natural and his brain will retrain to adapt to this shortly.

The best news is his ‘null’ point is still there, but in the new eye position.

This is the end of Ian’s account, for the moment, of his son’s recovery from null point surgery. The family wanted to share the experience with others. Null point surgery is not for everyone. Please seek advice from your ophthalmologist. The Nystagmus Network does not endorse or otherwise any particular medical treatment. We are simply sharing one family’s experience.

We wish Harry a full recovery.

Guest post – one week after Harry’s null point surgery

Harry has undergone the Anderson Kestenbaum procedure this summer to address his marked head turn. His Dad, Ian, has asked us to share their experiences. A few days after the operation it was time for father and son to have a chat about how things had gone.

Ian continues:

On the Sunday post operation I had a catch up with Harry and he mentioned some concerns he had about the success of the operation, which worried me, too. So I emailed the consultant on Monday morning with a list of these concerns. I wanted to be able to give Harry comfort, but I didn’t know the answers myself. The consultant immediately made us an appointment to go in to see him. He spent 20 minutes with Harry, examining him and discussing all the concerns. The outcome of this assessment was that the operation so far appears to be a huge success and the couple of concerns Harry had are just things that will settle down in time.

These are some of their concerns and responses from the consultant:

His actual head posture was turning slightly to the other side now (by about 5 degrees)

The consultant advised that this is fine. When his muscles settle down post op they will move towards the original position. In 2 months’ time we should pretty much see a straight head posture.

When Harry was opening his eyes slightly and not focusing on anything his eye was turned in towards his nose on the right side.

This is part of the new eye position. Once Harry can open his eyes properly, without pain, his eyes will naturally find their null point with his head looking forward. This is fully expected and no concern.

Harry noticed his peripheral vision to the right was vastly reduced.

This again is naturally going to happen as a result of the new eye position, but, once Harry is fully using his eyes, his brain will adapt to this and he will automatically turn his head to see. In theory he had poor peripheral vision on the other side when he turned his head, so this is just something new.

Null point surgery is not for everyone. Please seek advice from your ophthalmologist. The Nystagmus Network does not endorse or otherwise any particular medical treatment. We are simply sharing one family’s experience.