Welcome and Introductions

To the strains of Sospan Fach, by Cerys Matthews, Chairman of the Nystagmus Network, Richard Wilson OBE takes to the stage to welcome over 200 delegates to Open Day 2019.

Up next, Nystagmus Network Founder and Honorary President, Vivien Jones, will introduce lead researchers from Cardiff, Leicester, London, Plymouth, Sheffield and Southampton.

Elsewhere in the stadium, the children are enjoying our first drama workshop of the day, courtesy of UCAN Productions.

Meanwhile, our volunteer benefits adviser, Mike Hughes, will shortly begin the first of his surgeries of the day on nystagmus, DLA and PIP.

The Market-ness of the Market Place – building concepts through everyday experiences

A guest post by Gwyn McCormack, Director of Positive Eye: delivering training, courses and a unique product range to support the educational needs of children and young people with vision impairment

Gwyn will deliver a ‘Supporting literacy and learning at home using everyday experiences’ workshop at our Open Day on 28 September.

Sighted children develop a huge amount of knowledge and experience through incidental learning. During the first few years of life they have exposure to a vast range of visual symbols that convey meaning. This access to the literate environment doesn’t occur naturally for the child with visual impairment. Our goal is to expose the child with vision impairment to a rich variety of concrete experiences, involving as many objects, people, places and activities as possible. This should be done systematically, as early as possible and as often as possible.

Building this solid foundation of reading readiness skills and fun experiences from infancy is critical. Using a theme-based approach during the emergent stages of literacy development enables us to offer a multitude of rich, meaningful literacy learning opportunities linked to everyday situations, as well as ensuring we maximise the literacy opportunities from within fictional books.

We are surrounded by a vast array of learning opportunities which can be used to support the learning development of children with vision impairment. These start in the home, in the kitchen, in the bathroom, in the garden and beyond. A holistic approach harnessing the child’s everyday environment, embraced by professionals and parents offers the opportunity for exciting, creative and fun ways to develop the child’s skills. These skills– all crucial to the child’s emerging literacy pathway include: auditory and language skills, concept development, tactile and fine motor skills, book and story skills.

Key to concept development is that you ‘maximise and ‘reinforce’ each learning opportunity as much as possible in as many ways as possible. This is crucial.  You are teaching the child about objects, their characteristics and qualities, how they are made, where they are stored and what their purpose is in different contexts. The child needs to feel, smell, taste (if appropriate) and look at objects and develop appropriate and meaningful language to support their understanding.

I call this understanding the ‘ness’ of the object/activity.

A popular Positive Eye concept building activity to demonstrate this is the ‘woodenness of wooden spoons’. Gather a collection of wooden spoons (different lengths and types); explore how they are made, where they are kept, what they are used for and where they can be bought from. Investigate the sounds that can be made, explore the textures and feel of each spoon and taste food from them. In doing this we are looking at developing a clear understanding of ‘Process, Form, Shape and Purpose’.

Experience and maximise the learning opportunities by organising spoons from the shortest to longest, thinnest to widest, or smallest head to biggest; or measure using each spoon as a unit of measurement. Visit your local store and buy a wooden spoon, wash it, feel it when it is wet, dry it, put it in the drawer. Make beans on toast, feel how many beans fit on the spoon, try eating the beans from the spoon, does the spoon fit in your mouth? If not, whose mouth does it fit in?

Then, building on this approach, collect a Basket of Everyday Objects, (cups, jugs, brushes, spoons, socks, sponges, boxes) and develop and progress to include greater concept development, tactile discrimination and fine motor skills. Use different textures, make sounds, play and extend the learning – rattle the spoon in the cup, fill the cup and the jug with water and find out which holds the most, squeeze water from the sponges, match the socks or categorise the brushes, such as toothbrushes and paintbrushes.

These approaches form the way in which Story Buckets work. They offer a fun, creative way of cueing the child into enjoying a meaningful literacy experience linked to either a story or everyday learning opportunity or both. A practical example of this approach is Positive Eye’s well loved story ‘Marvin’s Market Adventure and Grandma’s Special Birthday Picnic’. This is a story about Marvin who was a kind a little boy. He loved to visit his Grandma and help her to look after her beautiful garden. One day he decided he would surprise her as it was her birthday and he want to make her a special picnic. He wrote his list of all the things he would need for the picnic and set off to the market to make his purchases. He would buy a beautiful flower for her garden and a little shiny fish for her pond…..little did he know that he was in for a surprise when he arrived at the market!

The story demonstrates how to support and develop a theme based approach using a fictional story, based on the rich learning opportunities within the everyday experience of the market place. It embraces the ‘marketness’ of the market place.

Using an appropriately sized bucket with a bucket apron fitted around it provides a convenient portable carrier and a place from which to bring the story to life. The pockets of the apron create exciting storage spaces to place the objects for the child to find, whilst larger objects can fit into the bucket itself. Blank credit cards with large print/audio labels/Braille labels are attached with Velcro to each pocket to encourage the child to read/listen to the label, letter/word.

Here is a list of some of the things gathered for the story bucket:
Bucket, bucket apron, Marvin (boy doll), sunflower with tatty leaves, 2D cut out silver fish, vegetables and fruit. Piggy Bank, purse, shopping list, shopping bag, real or plastic flowers. Bread rolls, gingerbread men, cake, lots of little and big shiny fish cut out in card, picnic cloth, bottle of lemonade, big and little plastic boxes for big and little fish, real vegetables and fruit. Red hat and apron, flat cap and apron, fisherman’s hat and wellington boots, baker’s apron and hat, paper bags, birthday candles.
As the story is told the child is cued into the critical features of the objects as they are introduced. With encouragement and support they can locate, explore, feel, press, touch, lift, hold, grasp, look, smell and taste (as appropriate). Talk to the child and use meaningful language to describe and explain purpose, shape, form and process as the story unfolds.
Here are some examples of the wonderful learning opportunities that lie within Marvin’s story. There are many more besides.

Main story

Read the story and give the child the real objects to hold whilst they listen
provide labels for all the items and have the child match the Braille/print label to the item
Dress up and role play the story
Make a simple model of a market stall
Make a book of main characters and key words
Make a shopping list; handwrite, type, record using audio labeller
Count money into wallet, sort coinage

Flora Flower’s Stall
Plant flowers and vegetables – measure growth
Feel the parts of the flower, petals, stalk, leaves
Talk about how flowers are used to signify different occasions: birthdays, weddings, saying thank you

Veg Man Vernon’s Fruit and Vegetable Stall
Buy and explore real fruits and vegetables, count, sort, categorise, discriminate, smell, taste, cut, cook, eat,
Make vegetable prints, add sand to paint to create texture
Explore a vegetable patch, grow own vegetables

Fishman Phil’s Stall
Visit a fishmonger, buy a fish, feel and explore, smell, cook and eat!
Talk about where fish live, pond, seas, rivers, lakes

Grandma’s picnic
Make/buy/decorate a birthday cake
Make gingerbread people: count, buy ingredients, make, bake and eat
Lay table for picnic, count how many plates, glasses, spoons are required

To sum up, literacy opportunities are all around the child waiting to be explored and experienced. Remember to add ‘ness’ onto everything you talk about, the ‘bucketness’ of buckets, the ‘fishness’ of fish, the ‘cakeness’ of cakes and more! Keep it concrete and purposeful with learning maximised to the full, but most of all keep it fun!

About Positive Eye

Gwyn McCormack founded Positive Eye in 2008, her mission being to provide practical courses, consultancy and a bespoke product range of resources for practitioners working with children and young people with vision impairment (VI). Positive Eye has developed a business that is highly respected and which works nationally in the UK and internationally. Gwyn has presented training in over 10 countries including Iceland, Belgium, France, Germany, Sweden, Romania and now more recently in the USA where there is a new developing interest in her work with 3 visits already under her belt and a 12 day training tour of Kentucky and South Carolina ahead. This is in addition to the great honour of being asked to present a pre-conference workshop at the Getting in touch with Literacy Conference in Seattle in November.

Gwyn uses her many years of experience as a Qualified Teacher of VI (QTVI) and Head of Service to deliver imaginative and creative approaches, within easy to use frameworks, equipping the front line practitioner with the practical skills they require to support children and schools. Her work has included taking the lead role in delivering the two year QTVI course at the University of South Wales, contributing to the University of Birmingham QTVI course, participating in European projects; the most recent on developing educational resources for professionals working with children with CVI. At the moment she is working with the Welsh government and has developed an exciting new approach; Step-back, a whole school/setting approach to promote independent learners to support Wales implement their new Additional Learning Needs Act.

Please do get in touch if the courses, resources and approaches developed by Positive Eye are of interest to your work.

www.positiveeye.co.uk

Email: [email protected]

Phone: 07947571559

Facebook: https://www.facebook.com/PositiveEye/

Twitter: @PositiveEyeLtd

Instagram: @pos_eye

Look on the bright side of being registered blind

GUEST POST: Daniel Williams takes a tongue in cheek look at the benefits of being registered blind.

It isn’t all bad – you won’t have initials after your name, but to be registered severely sight impaired (blind) you don’t need to have complete sight loss but will need to meet certain criteria. So, whilst you may be able to see enough to get around in a reasonably upright manner (except after a visit to the pub), if you pass the test, you’re in! Registering is voluntary, confidential and opens up a raft of prizes.

Blind man’s buff

You won’t get a nice T-shirt to wear – although badges are available – but being registered blind is not a tag that pops up on every screen whenever you want to buy something. It pops up on the right screens at the time you most need to see and be seen.

Registration just means that your name and the details of your visual impairment have been officially recorded by your local social services and then the badge of honour is yours. Things are looking up!

Once social services receive your certificate, they’ll make contact with you to come out and have a coffee and assess your needs.

We are a nation that likes to form an orderly queue … until you come along, jumping up front, flourishing your registration card with glee. Whist you’re unlikely to get invited to tea and scones at Buckingham Palace by the Queen, you can go to Alton Towers and skip all the queues – the same applies to Disneyland and quite a few other attractions. You can usually get a free carer ticket to most theatres, cinemas and attractions and that’s when everyone wants to be a blind person’s best friend!

Just flash the card

There is a need for caution. Best avoid zooming up to the front of the queue for Mr Whippy to get your ’99 first. Large one please! Still, there’s often a kind soul who might see all the slobbering and drooling … from you, I mean, not from your guide dog.

Once you are registered blind, you can settle down to enjoy your favourite TV show, even those gory vet programmes they like to show when you’re eating your dinner, with a half price TV licence. Yes, 50% off the fee!

Stay tuned, there are more goodies to come …

If you are employed, it’s always good to hear that you’ll pay less tax – with your new status as registered blind, you will be eligible for the blind person’s tax allowance.

The price is right

If you want to purchase specialist equipment such as a magnifier, it will be exempt from VAT which is great for avoiding tax once again.

Then there is free bus travel – the downside is that it may only be available after the commuter rush hour at 9.30am, but on the upside, this allows you to get a lie-in so you can stay out late at the pub and blame it on the buses or maybe not, as some bus passes stop working at 11pm.

Or why not get a disabled person’s railcard? As a blind person, don’t give in to the urge to get behind the wheel of a car and motor off onto the roads. But if you have a driver who can drive you around, a Blue Badge will come in useful and you can park in most Pay & Display spaces for free.

You can also get help with certain NHS costs and free eye health checks, which are still important so you can keep a regular check on your eyes without worrying about the price. Here’s the link.

Benefits and grants

Registration will help support a claim for financial support for: Disability Living Allowance (DLA), Personal Independence Payment (PIP), Employment Support Allowance (ESA), Tax credits, Access to Work, Disabled Students’ Allowances (DSA), Attendance Allowance. Click this link to access benefits calculators.

So, what are you waiting for? Simply visit a high street optician or your GP for an initial check-up and referral to an ophthalmologist and remember …always look on the bright side of being registered blind!

Take a look at my sight loss journey video by clicking this link.

All the best, Daniel

Daniel Williams was diagnosed with retinitis pigmentosa at the age of 8 and is now improving the lives of others living with sight loss through his business, Visualise Training and Consultancy. He is our keynote speaker at Open Day 2019 in Cardiff.

Free Open Day places for Cardiff families

The Nystagmus Network has been awarded a small grant by the Millennium Stadium Charitable Trust to sponsor a number of free places at Open Day 2019 for Cardiff families. The event takes place on Saturday 28 September at the Principality Stadium, Cardiff.

If you or someone you know would benefit from attending this event, please ask them to email us at [email protected] or complete the form below.

Thank you.

Open Day booking for Members is OPEN!

Members of the Nystagmus Network will by now have received their special link to our online booking platform and will be able to book their free adult and child places for Open Day 2019 from midday today, Monday 3 June.

Any remaining tickets will go on sale to non-members from Monday 1 July at midday. Prices will be £32 per adult, £10 per child.

It’s not too late to join. Any new members of the Nystagmus Network can still claim their free places. Why not join us today?

Nystagmus and Driving front cover.

Let’s talk about driving at Open Day

Following the changes, earlier this year, to requirements around nystagmus and driving in the UK, we have asked a medical expert from the DVLA to come along to Open Day 2019 to answer all your questions.

Dr Gareth Rees will join us in Cardiff to lead an informal question and answer session, so whether you’re a new driver or have been driving for years, or you know a young person about to begin lessons, hear firsthand about the DVLA sight test and whether or not it is legal and safe to drive with nystagmus.

Until Open Day, please refer to our free to download publication ‘Nystagmus and Driving’ and the DVLA website for information and guidance.

Meet Gwyn at Open Day

Gwyn McCormack founded Positive Eye in 2008 after many years as a teacher, first in mainstream secondary school and then as a Qualified Teacher of Vision Impairments in a peripatetic support service. She also spent five years managing a local authority peripatetic support service for children with vision impairments before leaving to set up Positive Eye.

Gwyn is an enthusiastic, committed and motivational individual, with a wealth of experience and knowledge in the field of education and vision impairment. She was inspired to set up Positive Eye by a passionate desire to improve outcomes for children with vision impairments by providing expert practical advice to help practitioners develop their skills and knowledge.

At Open Day 2019 Gwyn will show you how to make the most of all the senses to develop vision and the enjoyment of learning. Be prepared to have a go, making simple toys and props from everyday household items to make learning fun at home.

Dan Williams crouches beside his guide dog, Zodiac.

Referrals change lives

In a recent article published by Vision UK, Founder of Visualise Training and Consultancy, Daniel Williams, discusses the importance of referring patients from the hospital eye clinic or High Street optician’s on to local or national services offering condition specific support and information.

It’s time for your regular appointment at your local high street optician. Each year you receive a reminder letter and you go along feeling relaxed and ready to enjoy the rest of your day after your appointment is over. Thousands of people do this every day and many thousands do come away feeling happy and relieved and go on to shop or see a friend, putting the appointment behind them for another six or twelve months.

But what about those who come away feeling worried?

Read the rest of the article, here.

Meet Daniel at Open Day 2019.

The nystagmus research HUB is back!

Launched at Open Day 2018, the nystagmus research HUB will back back at Open Day 2019, giving delegates the opportunity to chat one to one with the UK’s leading nystagmus researchers and clinicians, try out equipment, volunteer for research trials and ask anything they want.

The HUB will be open throughout the event, so don’t forget to visit!

Can’t make it to Cardiff? No problem. Please send us your questions and we’ll pass them on.