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.

The logo of the Albinism Fellowship

Welcome boost for new mums and dads of young children with albinism

Guest post from Roselle Potts, Albinism Fellowship

For more information, please contact Roselle Potts, email: [email protected]

While the birth of a new baby is an occasion to celebrate, parents of children born with albinism often find that support for children with this rare genetic condition is hard to access.

To mark International Albinism Awareness Day* on June 13th, the Albinism Fellowship has stepped in with a new Baby Box scheme. This is available for all families who have a child with albinism who is under one year old and who become paid up members of the charity for the sum of £20 per year. The charity has obtained grant funding for this project and the items in the baby box

From that date, mums and dads will receive an Albinism Fellowship baby box as part of their membership. This contains items to help parents meet the specific needs of their young child; sunglasses, a factor 50 SPF sun protection hat, sun cream samples, a high contrast book and sensory toy as well as the Fellowship’s Understanding Albinism booklet.

Roselle Potts, Chair of the Albinism Fellowship, said: “The arrival of a new baby in the family is a joyful occasion, but when parents find their child has albinism, this can prompt many questions and even concerns. Children with albinism are visually impaired and very sensitive to the sun meaning they need extra care. “

“As the only charity in the UK and Republic of Ireland for people with albinism, we have around 40 years’ experience in helping mums and dads of young children with albinism.”

She added: “The baby box is an exciting new initiative which we are sure will be welcomed by new parents of children with albinism. When we chose which items to include in our ‘baby box’ we looked at the most common queries raised by new parents.

“They often ask us questions about how to protect children from the sun and how to best stimulate their babies’ sight, as children with albinism live with high degrees of visual impairment.”

Rachel Whyte, who received the first baby box for her son ( pictured with his book and glasses) said

“The baby box from the Albinism Fellowship was a gratefully received addition to the support they have already given my family. Having something in my hands meant I could use the helpful advice without having to worry about sourcing the right items. It gave me ideas of the right creams and hats to use and my son loved the easy grip brightly coloured balls. Thank you so much, we love it!”

Notes to editors

  1. For more information about the Albinism Fellowship Baby Box Scheme, or for interview and photo requests, please contact Roselle Potts at the Albinism Fellowship email: [email protected]
  2. For more information about the Albinism Fellowship, which provides help and support to children, their parents and adults with albinism in the UK and Republic of Ireland, please visit: https://www.albinism.org.uk/about-the-fellowship/
  3. About International Albinism Awareness Day*. International Albinism Awareness Day is marked every year on June 13th to celebrate the human rights of people with albinism around the world. It is marked with specific events in various countries, social media activity and campaigns. The United Nations’ General Assembly proclaimed June 13th as this specific day with a resolution it adopted in 2014.
Roger stands in his garden.

Nystagmus is … a guide for adults

A fabulous new publication, Nystagmus is … a guide for adults, is now available FREE from our online shop. The booklet is inspired by the wonderful Roger (pictured), who first contacted us with the idea last Nystagmus Awareness Day. He began with the words: “I have enjoyed nystagmus for nearly 80 years” and went on to outline his suggestion of asking people who live with nystagmus to describe it for others.

The end result of that project is full of contributions from people who have nystagmus, describing how they feel about it and how it affects their lives. For the first time you can read what it’s like to have nystagmus by the people who really know.

When we shared an advance copy of Nystagmus is … with Roger, earlier this week, he said:

“It’s fabulous and should open up a whole new understanding of vision disability awareness and training. I am proud to have been part of it and proud that you took up the challenge of getting and sharing your members’ feedback.”

Download your copy of Nystagmus is … here

Community Fund logo

The Nystagmus Network receives £8,000 from the National Lottery to increase our support services

The Nystagmus Network is delighted to have been awarded just over £8,000 in National Lottery funding to underpin its work supporting adults with nystagmus. The charity will use the funding to expand our support services to meet the greater needs of the nystagmus community during the pandemic and particularly to reach those who are isolated and would not normally turn to the charity for help.

With events and meetings postponed for now, the charity is continuing to run its support and information services during the current pandemic, by phone, email, on social media and via the website.

The new funding from The National Lottery Community Fund, which distributes money raised by National Lottery players for good causes and is the largest community funder in the UK, means we will be able to increase our reach by offering our services to an ever wider nystagmus community.

There are many people living with nystagmus who have not needed our support until now, but in lockdown they have been experiencing additional problems with shopping, social distancing and spending time outside. They have also been feeling increasingly isolated. We can now let people know that we are here for them.

Sue Ricketts says: “We’re delighted that The National Lottery Community Fund has recognised our work in this way. Now, thanks to National Lottery players, we will be able to let far more people know we are here and can offer support and information on a whole range of things from accessing help with shopping locally to benefits advice and more.”

About The National Lottery Community Fund

We are the largest community funder in the UK – we’re proud to award money raised by National Lottery players to communities across England, Scotland, Wales and Northern Ireland. Since June 2004, we have made over 200,000 grants and awarded over £9 billion to projects that have benefited millions of people.  

We are passionate about funding great ideas that matter to communities and make a difference to people’s lives. At the heart of everything we do is the belief that when people are in the lead, communities thrive. Thanks to the support of National Lottery players, our funding is open to everyone. We’re privileged to be able to work with the smallest of local groups right up to UK-wide charities, enabling people and communities to bring their ambitions to life.

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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,
RNIB

Let’s go for an eye test!

Our next webinar is all about going to a high street optician’s when you have nystagmus.

Tuesday 12 May at 3pm

You have had an eye test … what now ? 

An interactive webinar for the nystagmus community.

Jayshree Vasani (Dispensing Optician) and Sarah Arnold (Optometrist) want to dispel the myths around what happens after the hospital appointment.

What happens when you are discharged from the hospital eye service in to community practice? 

Why is it vital that you have regular eye checks?

How do I get the very best vision for my child?

What is a Dispensing Optician and Optometrist?

How can professionals in  eye care work together to benefit me or my child? 

These are questions we want to discuss and answer!

So join us for this webinar!  

We are excited to be meeting you all online and are looking  forward to the question and answer session!

See you there!

Jayshree and Sarah

CLICK OR TAP HERE to book your place

Nystagmus Aware logo

Does nystagmus or ocular albinism affect my immunity?

Lots of you are asking us this question and some of you have received notification letters from the government.

We asked for expert clinical advice and received the following statement:

“IN (infantile nystagmus) or OA (ocular albinism) in isolation are not associated with compromised immunity.

“There are some syndromic forms of albinism that are associated with immunocompromise and these patients would already be aware of this and/or have been notified by the UK government that they are in the vulnerable group.”

Whether or not you have nystagmus, please remember to follow scrupulous hygiene practices, including thorough hand washing, whenever inserting, removing or cleaning your contact lenses as we understand that the coronavirus can enter the body through the eyes.

If you wear glasses or sunglasses, please wash these regularly using non abrasive soap – we find washing up liquid does the trick.

If you are registered sight impaired (SI) or severely sight impaired (SSI) you can ask to use priority shopping times and online supermarket delivery slots.

Keep asking us you questions. We will find the answers for you.

Say safe and well

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.

https://www.quintillion.io/

Blind in Business event

“Expectations Exceeded” Parent and family workshop run by Friends of Moorfields and Blind in Business

Friday 22 May 2020

2pm to 5pm

Kemp House (next to Moorfields Eye Hospital)

152-160 City Road, EC1V 2NX

The Boardroom, 4th Floor

Parents, carers, young people, friends and family are all welcome to attend!

  • Learn and speak with blind and visually impaired people who are working in modern careers.  
  • Get views and opinions on their education, finding work, the technology they use, what support they have and what experiences they’ve had throughout their lives.