for parents and carers – Nystagmus Network

Nystagmus and the early years

The Nystagmus Network is proud to launch a new guide to nystagmus and the early years. Written for new parents and carers where a baby is newly diagnosed with nystagmus, this digital guide talks you through what to do, where to find help and how to support your child’s development from 0 to 5 years.

Nystagmus and the Early Years is the latest in a whole range of information guides for parents and carers, all available to download for free from our website in PDF and Word doc format. Plain text print versions are available on request to [email protected]

Reviewing the new guide, Nystagmus Network trustee and chair of the charity’s Support Committee, Kathryn Swanston, said: “Congratulations on another excellent resource. Well done to all involved in putting this together. The addition of the parent’s perspective is great.”

Download your copy of the new early years guide here

A woman supports a child with music and movement exercises.

Stress busting workshop for parents and carers

Parents’ online get together, November 29 2023 7-9pm – guest speaker from CONTACT*

At our next online get together for parents and carers we will be joined by a speaker from CONTACT who will deliver a workshop on Wellbeing Workshop for parents and carers

Here’s what the workshop is about:

Stress can be a huge factor for families. What causes you stress and how do you cope with it?

This online workshop will give you the opportunity to hear other parents’ experiences, learn new strategies and share as much or as little of your story as you wish. We will explore ways of reducing your stress by improving the areas that could help you feel more positive and able to get the most out of life.

After the session you will:

• understand clearly what stress is and how it affects you

• learn about coping mechanisms and other people’s coping styles

• identify new ways of coping with stress and reducing your stress levels

• be motivated to try new stress busting ideas until you find ones that suit you

• improve your wellbeing

To express your interest in joining the session on Wednesday 29 November from 7 to 9pm, please email us at [email protected]. Thank you

*CONTACT is the charity for families with disabled children

Parent Power April

The Nystagmus Network is delighted to be able to offer parents and carers of children and young people with nystagmus the opportunity to attend a further session in our series of Parent Power webinars.

Each webinar, led by Karen, from IPSEA (the Independent Provider of Special Education Advice), supported by the charity’s volunteer education advocate, Claire and Sue from the staff team, introduces parents to the special educational needs support available in schools and early years settings and empower you to access it for your child. We’ll even introduce you to EHC plans.

The one day webinars (10am to 2.45pm) are FREE to attend.

The next workshop takes place on Friday 29 April

Book your FREE place here

Members of the Nystagmus Network can request advice from our volunteer education advocate, Claire or ask for a referral to our Education Advocacy Service for one to one support with casework.

Notes from the February Parents’ Forum

Thank you to everyone who joined us for the Nystagmus Network February Parents’ Forum.

Homeschooling

Although it was Half Term for some, homeschooling was mentioned quite a bit. We talked about requesting modified print versions of online work to reduce the amount of screen time children are exposed to during this time.

We loved the suggestion from one parent about using face time for parallel lego play with a friend or story time with grandparents instead of using it for online games.

We also had a quick insight, thanks to one of our members, into full time, permanent home education, as opposed to homeschooling in a pandemic.

ECLOs

Ian, our Information Support Officer made sure that everyone knew what an ECLO (Eye Clinic Liaison Officer) is, how they can help support the whole family and where to find them. Please contact Ian at [email protected] if you need help finding your ECLO.

ADHD and Dyslexia

There was some discussion about ADHD and nystagmus and whether there may be a link. There is no known link, and the likelihood of a child with nystagmus having ADHD is no greater than for any other child. Children with nystagmus are sometimes mistakenly thought to have ADHD because of some of the characteristics typical of nystagmus (inability or unwillingness to maintain eye contact, or a child unable to access their work, for example). If in doubt, a proper test should be commissioned.

Similarly with dyslexia. Children with nystagmus can struggle to read at first because of the phenomenon known as visual crowding (the inability to pick out individual letters or words from a page) and difficulty in scanning from line to line. Both of these are caused by the eye movements. They can be overcome using a card, ruler or Typoscope to keep focus on a single word or line of text at a time.

There was a question about photosensitivity and nystagmus. There is a definite connection in many cases. The advice is to protect the eyes as much as possible from bright lights, glare and reflected light, using curtains, shades and blinds and wearing peaked caps, wide brimmed hats or sunglasses indoors and out – and also especially in the car – as a precaution.

The Nystagmus Care Pathway

Thank you for your helpful contributions to the work we are putting together towards the Nystagmus Care Pathway. These have been passed to Jay Self and the NUKE (Nystagmus UK Eye research group). We hope that the guidelines will be endorsed and published, through the Nystagmus Network website and elsewhere, very soon.

Gmail group

Parents were offered the chance to join a Gmail group for parents of children and young people with nystagmus so they can keep in touch with each other more easily by email between zoom calls. The charity will also contact parents via this group to invite you to future meet ups and keep them posted on nystagmus news and updates.

Facebook

Please do join the Nystagmus Network Facebook group for parents. It’s there for you to help you connect with others.

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