children point to a computer screen

Notes from the January Parent Forum

The Nystagmus Network runs regular virtual get togethers for parents and carers on Zoom. Here’s Sue’s report on the January event, which focused on homeschooling.

It was lovely to see Mums and Dads on the Nystagmus Network Parents’ Forum this month. You’re all doing a great job on the homeschooling front, but I think it’s fair to say we’re all looking forward to some warmer weather, when we can get the children back outside, and to schools reopening, too. 

We covered topics including resources, creative activities, down time, eye health and screen use and EHC plans. Here are just a few follow up notes which I hope will be useful. 

Homeschool  BBC Bitesize – learning resources for all Key Stages and those downloadable timetables  

Homeschooling and nystagmus: read Nadine’s blog post

Eye health and screen time Association of Optometrists’ advice on screen time and eye health

Specsavers’ information on children’s eye health and screen time 

The 20-20-20 rule explained by Fight for Sight in this BBC article

SEN support at school IPSEA online courses for parents are really helpful with the EHCP process or if you need to prepare an appeal. The next EHCP masterclass for parents is on 9 February and there are lots more online learning opportunities.

The Nystagmus Network offers an education advocacy service for parents who are members of the charity. This is one to one bespoke support provided by our IPSEA trained volunteers, Frances and Claire. Membership subscription is £25 per year. Please let me know if you’d like to be referred to our education advocates.

General information for parents You can download a whole range of information for parents and carers from our website.

Please keep an eye on our Facebook page for all our latest news and information and, if you haven’t already, please join our Facebook group for parents.

And finally … please remember  we’re only an email or a phone call away.
I look forward to seeing you at the next parent forum.

If you’d like to join the next Nystagmus Parents’ Forum, please contact us here.

Nadine smiles for the camera

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:

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


A screenshot from the website of Geldards LLP and the words SEND with a COVID-19 pandemic

SEND within a COVID-19 pandemic

In his presentation for the Nystagmus Network virtual Open Day 2020, Kevin McManamon, Senior Associate, Educational Team, Geldards LLP sets out the current position of SEND support in schools in England and Wales.

To view Kevin’s and all the other presentations, please register here

Nadine smiles for the camera

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.

Technology use in young people with impaired vision: a new study

Guest post from Saima Begum, University College London

I am a student at University College London, studying at the Institute of Education and I am emailing to ask for your help with my Masters research project into Vision Impairment.

This project aims to examine technology use in young people with vision impairment, and whether this influences their educational attainment.

There is much research that has found that technology such as screen-readers on phones have been useful for people with vision impairment to be able to function in everyday life, so my project is aiming to look at whether technology use can also have positive effects on education.

Moreover, because of the increasing use of social media, I plan to look at whether technology use can have a positive effect on friendships. This data is important to collect as it will show how young people with VI use technology, and how this could be utilised so they perform better in school.

Participants are invited, between the ages of 11 and 18.

All questionnaires can be completed online, and participants can do this from the comfort of their own homes.

Click or tap here for the questionnaire 

The questionnaire is accessible for screen readers. The first page of the questionnaire also includes an information sheet with more details regarding the project.

Children reading The Gruffalo.

The impact of COVID-19 on visually impaired children

A guest post from Rosaleen Dempsey, RNIB

Hi there

I am from the children’s services in RNIB. Wonder if you would mind sharing a survey for families about the impact of the COVID-19 crisis on the education and development of children with VI. Survey has been designed by partners in the sight loss sector and is U.K. wide.

Parents’ survey closing this Friday – 15 May

This is the final week to to tell our governments/assemblies across the U.K. about the impact the COVID19 crisis and lockdown is having on the learning & development of your children and young people with VI. Please take a few minutes to fill it in if you can.

Take the survey here

Many thanks,
Rosaleen Dempsey,

Children pointing at a computer screen.

A round up of online learning

The Nystagmus Network has put together a handy list of tried and tested online learning resources for parents and carers. It’s a list that’s growing day by day. If you’d like to recommend a resource, please contact us and we’ll be happy to add it to our list.

A brilliant ‘how to’ guide for parents and carers of visually impaired children from our friends at LOOK UK.

Activity shares from Gwyn at Positive Eye.

A catalogue of VI friendly resources for use at home or at school from the Partially Sighted Society.

Partially Sighted society Catalogue

Some great ideas for outdoor activities that you can also do indoors from the Scouts.

The great outdoors

A book by a nurse for young children worried about coronavirus from Nurse Dotty Books.

The original accessible learning tool: BBC Bitesize.

BBC Bitesize

A whole list of e-learning platforms compiled for you by Mumsnet.

Mumsnet online learning resources

Large print, audio books and Braille versions available to families and schools from BookShare.

RNIB BookShare

VI friendly books from Guide Dogs’ Custom Eyes Service.

Custom Eyes books

A subscription free postal library of audio books from Young Calibre.

Young Calibre

Beautiful tactile books and activity sets from our friends at Living Paintings.

Up to date and factual advice and information for parents and carers from IPSEA.

IPSEA update on Covid-19 school closures and sen provision

Access a free app designed to help your 12-18 year old grown in resilience, self esteem and learning power, created by Quintillion.

Our #GivingTuesday Appeal

Please help the Nystagmus Network support more children to access learning at school, by pledging £5 on #GivingTuesday.

The Nystagmus Network provides an education advocacy service for parents and carers of children and young people at nursery, school or college to ensure they have equal access to learning. We’d like to train another volunteer education advocate to help Frances and Claire with their enormous workload. Please help us to meet this need by making a donation this #GivingTuesday.

Every £5 donated will help us provide education advocacy to parents and carers of children and young people with nystagmus.

Our appeal target is £850 which is the cost of initial training for a new volunteer education advocate.

Thank you

Please donate here – thank you

Going to uni with nystagmus

Today’s guest post comes from Ella, author of the blog, Life of Ella. Ella is a First Class Honours graduate and a civil servant. She also happens to have nystagmus.

Some people with nystagmus might think that university is not for them, but Ella is here to share her experiences of support and success.

I recently graduated (class of 2018) from Nottingham Trent University with a first-class honours in Health & Social Care. I have a mild form of Cerebral Palsy and I’m visually impaired (I have Nystagmus and Astigmatism). 


I went through the same process as everyone else as applying for a place at university – writing my personal statement and submitting my UCAS application, deciding on my potential choices and working for the grades I needed. 

When it came to choosing my five choices, (in the end I had four) I had to first decide the furthest away I wanted to look from home, and how easy it was to travel there and back home on my own. Reasons for this being I can’t legally drive so I rely a lot on public transport (mainly trains) to get me from A to B. 

My four choices in the end were:

  1. Nottingham Trent (NTU)
  2. De Montfort (DMU)
  3. Bradford
  4. Manchester (I never actually looked round in the end…) 

It was actually quite difficult to choose my first and insurance choices – for a long time, my top three choices were all being re-ordered, all for different reasons…the course, location, the campus, even the lecturers at the open day. Eventually, I settled on the list above, and I am so happy I went with NTU as my first choice, but more on that later. 

After having my place confirmed at NTU I was then able to apply for my tuition and maintenance loans from Student Finance England (SFE), and apply for the Disabled Students’ Allowance (DSA) alongside … let me tell you, this was not a smooth ride, and I encountered my first major hiccup.

I was told about the DSA when I looked around DMU for the first time, with my parents. We visited the Student Support department to see what support they had to offer, and I briefly explained my situation and my needs. I never knew it existed until that moment, so I looked into applying for it at the earliest opportunity.

Take a look at this post by Chloe which explains the DSA in more detail and type of support you can get from it. I will also try and cover the help I got too.

My DSA process – from start to finish

After filling out the form for both SFE and DSA, they were both accepted. I was invited to arrange a Needs Assesment to determine what support I would need to help with my studies. 

The assessment was pretty informal, a long chat so the assessor could find out more about my conditions (using non-medical jargon!) and chatting more about what could help with my studies.

The following recommendations were put into the final report and put forward to help me with my studies:

  • scanner and printer – this would allow me to print out all the materials I would need (particularly useful for doing my dissertation and printing out/analysing papers)
  • Read and Write (text to speech software) – for me, the most useful piece of software and I wish I had known about it earlier. I mainly used this for when I was writing my assignments, as it would read aloud to me as I was typing so I could notice if there were any mistakes, which was extremely useful. There was also a feature for when I was researching for assignments to use different coloured highlighters. Read and Write would then store them all in one place, I could make each colour for particular subjects/ideas, and wouldn’t have to go back to find them each time. 
  • Dragon Naturally Speaking (speech to text software) – This bit of kit is amazing. Think Siri but smarter. You train Dragon to recognise how you speak and get used to your accent (coming from Yorkshire I was sceptical it would understand me…) but it came in handy when doing my work but I was feeling tired or didn’t have the energy to write out thousands of words in a short space of time.
  • MindView – this is a mind mapping software. It allowed me to create mindmaps on my laptop for assignment outlines. I was able to easily access them, and they were easier to read than paper versions. 
  • Audio recorder and software – mainly used for recording lectures so I could focus on the key points, but have all of it to listen back to if I needed to.

As well as these, I was given an ergonomic chair (to help with my posture and my pain if sat down for long periods – normal office chairs are super uncomfortable. The chair was made-to-measure)footresta laptop stand, and an external monitor

We initially thought the laptop I had at the time would be suitable to run all this new software on – but when the suppliers came to fit it all, they ran into a problem. My laptop wasn’t powerful enough to run some of the software I needed. Luckily, DSA meant that they offered laptops to those who needed them. The catch – they had just updated the rules, meaning everyone now had to pay £200 if you wanted a laptop from them. That aside, I had everything I needed to help me when studying.

I was able to keep everything I was given, so my chair and footrest now live at work.

Next, I was able to apply for my student accommodation. My parents spoke at length with Student Support and Accommodations services at NTU to assess my options. I was always going to stay on campus, as that way I was able to access everything I needed, have my own space and the staff were able to help if I needed it. I Was able to go back and visit the accommodation a few times and I even got to pick my specific room.

Months went by and results day had passed.  I kept checking my SFE online account to see that everything was in order. However, my tuition and maintenance loan application still said: “Awaiting confirmation” or something to that effect. Long story short, when I finally got to speak to a senior member of staff, it turns out my DSA application had somehow overwritten my other application. The whole process was a very stressful and inaccessible one, meaning I was considering dropping out of university before I had even got there, but they managed to sort it all out in the end.


I was able to move into my halls of residence a few days before others. This gave me a chance to settle in and get used to my surroundings before it was full of my flatmates. 

Freshers Week wasn’t the nicest experience. I don’t drink and haven’t really been around many people who have drunk a lot. The nights were very loud and I felt very anxious. I mainly just hibernated in my room watching Netflix or YouTube, trying to drown out the loud music. I know that isn’t what you’re supposed to do but it just wasn’t my thing, but that is what Freshers is geared towards. 

Throughout my time at university, I had an Access Statement which detailed my disabilities and what help I needed. This was given to my personal tutor(s) and lectures to help them understand what I needed and be aware of my situation. The statement also allowed me to gain deadline extensions (if I needed them) on assignments. 

I was mostly able to access the lecture and seminar PowerPoint slides to read beforehand on my iPad and laptop and during the lecture. 

If I was meeting new tutors, I took it upon myself to introduce myself to them and make them aware of my situation, regardless of them seeing my access statement. Most were extremely helpful and made my experience more positive.

My DSA allowed me to also have a non-medical support mentor. She would help me with planning my assignments and helping me with accessing materials and the best way to organise my work and proofreading. I found this extremely useful and would definitely recommend it. 

During my three years at NTU, I stayed in halls of residence. This was for my own safety and ease of access. Student houses are often old and inaccessible, so that wasn’t an option for me. My friend and I decided we would stay in halls of residence together, we were able to stay in the same flat and still be on campus. I enjoyed living on campus throughout my time at university. 


So…you might be wondering, what am I doing now?

I have a job working as an Administrative Assistant for a Civil Service department in Leeds. I have been in employment since November 2018. At the moment I am working part-time, as I was unsure of how I would cope with full-time work.

Reed in Partnership: Better Working Futures programme helped me in gaining employment. They not only helped me find a job but helped me massively with interview techniques and gaining confidence. 

I really hope this post has been useful. If you are at university or in employment with a disability, what advice would you give to others?

Ella x

You can follow Ella’s blog, Life of Ella, here.