parents and carers – Nystagmus Network

Becky is wearing a yellow coat and stands beside a table with laptop and phone.

Parents and carers get together

Parents and carers of children and young people with nystagmus are warmly invited to our first Parents’ Get Together of the year. We are delighted to share that Becky Hyams will be joining us as our special guest. Becky is a second year university student, studying Advertising and Digital Marketing. She has nystagmus herself. She will be sharing her experiences of school, university and also how she wants to raise awareness of disability to help educate others. Becky has created her own blog and social media accounts, ‘beckys.blurred.perspective’ to help achieve this.

If you’d like to receive an invitation to the get together on Tuesday 21 February from 7.30pm, please email us at [email protected]

What shapes quality of life of visually impaired children and young people?

Guest post by Ana Semrov, PhD student and study researcher, Vision and Eyes research team at UCL

Childhood visual impairment can have a significant impact on a person across their whole life, affecting their social and educational outcomes, career prospects and quality of life. However, how individual children and their families adapt to living with a visual disability is very variable.

We aim to find out what helps children and young people with visual impairment and their families adjust to living with impaired eyesight and helps them have a good quality of life. We hope this will help us to develop and improve care and support for families of children and young people with visual impairment.

To do this, we are inviting children and young people with visual impairment and their families to take part in our study. Taking part in this study would involve both the child/young person with visual impairment and at least one of their parents/carers completing some questionnaires about topics like general health, well-being, and relationships with others.

If you would like to participate, please fill in a few questions that will tells us a bit about you to help us make sure this study is right for you. To answer these questions, please go to https://redcap.idhs.ucl.ac.uk/surveys/?s=9FNN88TLENTKY4YE.

This research is funded by Fight for Sight and Ulverscroft Foundation, awarded to Professor Jugnoo Rahi.

More Parent Power coming soon

The Nystagmus Network is delighted to be able to offer parents and carers of children and young people with nystagmus the opportunity to attend our periodic 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.

Dates for our next Parent Power workshop will be announced soon.

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.

Parent Power this February

Thanks to a grant from our friends at the Thomas Pocklington Trust, the Nystagmus Network is delighted to be able to offer parents and carers of children and young people with nystagmus the opportunity to attend one of a brand new series of Parent Power webinars.

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

Places on the next February workshop are open for booking.

Book your place for Parent Power on Friday 11 February 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.

Parent Power is back!

Each webinar will introduce 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.

Each session will be led by Karen, a qualified and experienced trainer from IPSEA (the Independent Provider of Special Education Advice), supported by the charity’s volunteer education advocate, Claire and Sue from the staff team.

The one day webinars (10am to 2.45pm) are FREE and will be held online from November, 2021 through to March 2022, so there’s bound to be one that suits your schedule.

Places on the next two workshops are already open for booking.

Book your place for Parent Power on Friday 14 January here

Book your place for Parent Power on Friday 11 February 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.

A Guide Dogs banner featuring an image of a woman and a yellow Labrador and the words 'We're here to help people with sight loss live the life they choose.'

Free iPads or iPhones for children with a vision impairment aged 3-18

Guide Dogs this week launch a new service, Tech for All, to help children with a vision impairment access their own devices at home – to support learning, or simply to have fun and explore the interests and activities they enjoy.

Tech for All will provide iPads to visually impaired children aged 3-18 across the UK, whilst secondary school-aged children (11-18) may choose an iPhone instead. The devices have excellent accessibility features built-in and online guides and tutorials will be provided to help them get started and to ensure that they know how to stay safe online.

The devices will be completely free of charge, with the only requirement being proof of vision impairment.

More information can be found at www.guidedogs.org.uk/techforall and applications are scheduled to open on Thursday 22 July. Stocks are limited so apply early to avoid missing out!

Apply here

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.

A group of parents and Nystagmus Network volunteers.

Come along to the forum

As part of the Nystagmus Network virtual Open Day 2020 we will be hosting a series of zoom chats on Saturday 3 October.

For parents

There will be a virtual parents’ forum at 2pm. Share experiences, make new friends. This session will be led by Marie Travers, herself the parent of a child with nystagmus.

Please contact us to join.

For adults with congenital nystagmus

There will be a virtual adults’ forum for people living with congenital nystagmus at 3pm. Meet others, make new friends, share experiences. This session will be led by Daniel Williams, an expert in accessible employment who himself lives with sight loss.

Please contact us to join.

For adults with acquired nystagmus

Professor Chris Harris from the Royal Eye Infirmary, Plymouth will be answering your questions on Acquired Nystagmus and Oscillopsia at the virtual adults’ forum for people living with acquired nystagmus at 4pm.

Please contact us to join.

A postcard to advertise virtual Open Day on 3 October, showing a selection of images of the highlights to come.

Want to meet up?

You’re warmly invited to join us for one or more of our upcoming forums in the run up to Open Day 2020.

Because we know that one of the ‘best bits’ of Open Day is meeting up with others, we’re holding a series of online forums to help you do just that.

In August and September, we’ll be hosting some great opportunities for you to network and chat with other people living with nystagmus or other parents.

Parents’ Forum
A zoom meet up led by Nystagmus Network staff and volunteers. Your chance to network, chat and ask all your burning questions.

Thursday 13 August at 7.30pm

Parents sign up here

Adults’ Forum
A zoom meet up led by Nystagmus Network staff and volunteers. Your chance to meet up and share notes with other adults living with nystagmus.

Thursday 27 August at 6pm

Adults sign up here

Acquired Nystagmus Group – meet the expert
A zoom meet up led by Nystagmus Network staff and volunteers. Your chance to hear an expert speak about acquired nystagmus and ask questions.

Date and Time to be confirmed

Acquired Nystagmus sign up here

Ifigeneia stands in front of a whiteboard in a lecture theatre.

Parents of adolescents with nystagmus: research participation opportunity

Ifigeneia Manitsa BEd, MSc, AFHEA (pictured) is a Psychology Researcher at Kingston University London. Her research is about the social and academic inclusion of adolescents with and without visual impairments.

Ifigeneia has a Degree in Primary Education and a Masters in Special Education. Visual impairment has been her field of expertise for the past 7 years.

Her latest study is on the social relationships that sighted and visually impaired adolescents, aged 12-14 years, who attend mainstream schools or mainstream schools with special resourced provision, develop with their teachers and peers and the impact of these relationships on their school grades and classroom participation. An outline of the project is below.

Sighted and visually impaired adolescents aged 12-14 years will be asked to complete 3 questionnaires:

a demographic questionnaire
a questionnaire on the social relationship they have developed with their favourite teacher
a questionnaire on the social relationship they have developed with their closest friend in school

These questionnaires will take approximately 30-45 minutes. The main researcher is going to ask the questions and adolescents will answer them. The teachers the adolescents nominate as their favourite ones will be asked to complete a questionnaire on these students’ academic inclusion (test grades and classroom participation). This will take approximately 15 minutes to complete and they can do it in their own time. Additionally, we would like to have access to the academic grades that students have received in English, Maths and Science in their last report. Their teachers can share these with us and we will, of course, ask for parents’ and students’ permission.

The adolescents who participate in this study may have a visual impairment, but no learning or cognitive disabilities.

The questionnaires can be completed by phone, email, Skype or post.

If you would like to know more about the study or Ifigeneia’s work, please contact us.

If you would be interested in taking part in the study, please complete the form below. Thank you.