Saturday 28 January 2012

North Wales girl's vision 'like looking through Swiss cheese'

LIFE through brave little Elisa Wheeler’s eyes is like “looking through the holes in Swiss cheese”. 

Although her eyes are normal, the eight-year-old’s brain can’t process what she sees – leaving big gaps in her vision. It means she has difficulties making sense of the world around her.
The plucky Ysgol Maes Hyfryd pupil was just a baby when she was diagnosed with Cerebral Visual Impairment (CVI) and mild cerebral palsy.  Every day since has been a “learning curve” for her parents, Polly and Derek, and older siblings Iestyn, 13, and Lowri, 11.

The family from Corwen have spent countless hours researching on the internet and developing techniques to aid her “misunderstood” condition, which makes learning letters and numbers an almost impossible task.  Her abilities can also alter from one day to the next depending on whether or not she’s tired, feeling ill, or is suddenly disorientated by unexpected loud noises.

Polly explained: “CVI is a very complicated condition where some of the special vision parts of the brain and its connections are damaged. With it, things can change daily.

“If Elisa’s extremely tired, she can fall over three or four times or miss steps. Her ability to cope with noise and look at the same time is affected – for example if an ambulance goes past with sirens on all of a sudden, it really frightens her because she’s only able to process one thing at a time, and we think it cuts her vision off.”

Polly said it’s also very difficult explaining the complex condition to people and getting them to understand. She added: “It’s quite hard when you’re just a mum. I’m not exactly the most educated person when it comes to medical matters, but you have to learn.

“The way some people have described it is like looking through the holes in Swiss cheese, in that you will only see a part of an image while the rest of it is blocked. “Similarly, there is a lot of information missing when Elisa looks at things and so she sometimes struggles to recognise faces, but yet will pick out a coat or clothing. “At school, she has one-to-one support and is mainly dependant on adults because when the kids are running around the playground at break times, Elisa can’t see who’s who and she can’t react quickly enough to people, which obviously has an impact on her building relationships. 

“That said, we are really pleased with the way her vision is coming along because the more she learns, the more she sees. It’s all about stimulating her brain and teaching her strategies which help her to make sense of the world around her.”

Elisa has visited a CVI expert in Scotland who helped the family develop methods to teach her colours by associating them with objects. But when she was a baby, the family were pretty much “on their own” without the internet.

Polly had suffered a difficult pregnancy and Elisa, who was in the footlong breech position, was born eight weeks early by Caesarian section. Not long after, doctors discovered that her brain connection pathways were damaged, and for 12 months of her infant life she was left completely blind. The Wheelers were forced to “self educate” themselves while medics looked for answers. Polly described the feelings of isolation trying to get to grips with her daughter’s impairment without the ability to explain it. 

“Elisa’s condition just didn’t make any sense to me at first – I kept thinking if she can see it, then why can’t she do it. You don’t realise that most of the ability to see depends on the messages being sent from the eyes to the brain. In Elisa’s case, the messages just can’t get through properly.”  The 50-year-old added: “It’s only in recent years that we got the internet and it opened up a lot more doors for us as we went on forums and researched the condition. “It became a quest for us to find the information that was out there, and with knowledge came more confidence. At the end of the day, you’re the real expert because you’re having on-the-job training and know your own child.

“However it sometimes feels as if you’re spending your time with your back to the rest of the world while you search and type, and you can feel isolated knowing you’re the only voice saying these things to teachers and parents. The massive responsibility of not getting it right is frightening because it’s Elisa who’s got to live with the implications, so I’ve got to do my best to help her. We don’t know how far her potential will go but we are so proud of her and would never restrict her. She’s a great little girl who’s brought so much to our family. She brings a smile to everyone’s face.”

CVI causes visual impairment even though the eyes are normal. Often children with it actually have good visual acuity but can’t make sense of what they see. In most cases, once the damage has happened it does not get worse. As the child grows older the visual difficulties may slowly improve. There are many different causes of damage to the vision parts of the brain. Most often damage occurs while the child is still in the womb.

The internet opened up reams of information and support for Polly and she was helped by charities including Contact a Family, Snap Cymru and Parents of Disabled Children.

Contact a Family campaigns to raise awareness of the issues affecting families of the 770,000 disabled children in the UK.  A spokeswoman said: “Families with disabled children experience isolation in different ways: a lack of social interaction due to difficulties working and not having the time or money to do family activities; a fear of how people will react when they go out with their child; and feeling alone because no one else shares their experience.”

Srabani Sen, the organisation’s chief executive, said: “Isolation is having a devastating impact on  some of this country's most vulnerable families. This isolation can be avoided if tackled at the earliest opportunity.”

For more information visit
Thank you to my good friend Polly, for granting permission to use this article. Elisa is a truly delightful little girl and I  felt strongly when I have seen her that with the right approach and strategies she ought to make good progress - Maurice.

First published in the Daily Post, North Wales, 21 January 2012.

Wednesday 18 January 2012

15 Facts to Share During Braille Literacy Month

by Staff Writers at

The following article was sent to me today. It is so interesting I have included it in total, with many thanks to Jasmine at, who was kind enough to share it. In the USA  January is Braille literacy month and we on the other side of the pond should take notice.

Every January in the USA, the visually impaired and legally blind, their loved ones, and their advocates (many of which sit in one or more of these demographics) recognize Braille Literacy Month. As one can probably ascertain from the title, participants hope to stoke the dwindling use of the revolutionary reading system. Audio technology may have curbed Braille usage in the classroom and workplace, but that doesn’t dilute its significance or usefulness any, of course. Educating oneself and the rest of the populace about visual impairments, blindness, and the reality of Braille marks the best strategy for promoting its prolificacy.

Actually, nearly every widely-spoken language out there sports its own Braille system: it isn’t relegated exclusively to English. Or written language in general! Math, computer science, and music (which was developed quite early in the system’s existence) all have their own unique system to accommodate the visually impaired as well. 

·  Lessons in Braille begin with tactile exercises

National Braille Week’s official site notes the Royal Blind School’s strategies for educating visually impaired children initially involve activities meant to fortify their fingertips. Uniquely textured objects are placed in trays, and young students must sort them based on how they feel. These activities enhance their tactile sensitivity for more advanced notebook-based exercises starting in their teen years. 

·  Louis Braille developed his eponymous system at age 15

After a horrific childhood accident that blinded him with an awl, Louis Braille spent his early teens parsing together a system allowing himself and other visually-impaired individuals the ability to keep reading and learning. 1824 saw the invention of the writing style bearing his name, which he developed as a 6-dot structure building on Charles Barbier de la Sarre’s military methods intended for night deciphering. 

·  At 20, he published the first complete book about the Braille system

Method of Writing Words, Music, and Plain Songs by Means of Dots, for Use by the Blind and Arranged for Them hit classrooms in 1829, detailing all the ins and outs of Louis Braille’s brand new system. As one can probably expect from its lasting influence, it proved an incredibly valuable asset in schools educating the visually impaired. 

·  The Missouri School for the Blind was the first American educational institution to accept Braille

They incorporated the system in 1854, despite protests from fully-sighted teachers unwilling to try and learn its intricacies. Obviously, the trend took hold and landed in both specialty and mainstream schools alike. 

·  Six-dot Braille cells have 63 possible combinations

Each cell is arranged as an affair with two dots across and three down. A through J sit in the top two rows, K through T include the last, and U through Z add the last two dots to the first five letters. W, however, plays by its own rules owing to the fact that the original French included no such letter. 

·  There are three different “grades” of Braille

Every grade represents a different skill level, with 1 being best for those just starting to learn Braille and 3 for the more familiar. Basic letters and punctuation characterize the first, while the second builds off of that to include contractions – making it the most common version found in public. Once a person hits Grade 3 Braille, he or she can learn the shorthand for personal use, such as lists and notes, rather than more formalized literature. 

·  “Braille for feet” exists

In order for businesses to meet standards set by the Americans with Disabilities Act, Tilco Vanguard developed a veritable “Braille for feet” that assists the visually impaired in knowing the boundaries of dangerous areas. Technically referred to as “truncated domes,” these bright yellow strips spell out a universal message in order to keep store and restaurant patrons safe. 

·  Most legally blind children in the United States do not use Braille resources

Shockingly enough, 34% of the 59,341 legally blind American children (defined by the American Printing House for the Blind as between the ages of 0 and 21) are considered non-readers. That comprises the majority, by the way. Nine percent stick with Braille; 27% are capable of reading visually; 8% get their lessons done as auditory readers; the last 22% qualify as pre-readers. 

·  At least 27 states hold legislation requiring that legally blind children have access to Braille resources

Advances in audio technology have not rendered the Braille system moot, of course, but they did signify a general decline in usage since 1963. Combined with the mounting number of non-reading, visually impaired children, advocacy groups gathered together in order to ask policymakers for more protective legislation. In response, at least 27 states so far have made sure to protect them from discrimination by requiring educational institutions to provide Braille materials to visually impaired kids who need them. 

·  Visually impaired readers who learned on Braille have a lower unemployment rate than their print counterparts

Earlier studies noted that visually impaired persons who first learned to read using the Braille system hold a 44% unemployment rate. By contrast, those more accustomed to print media —
or incapable of reading Braille, as it were —
sat at a staggering 77%. 

·  The vast majority of legally blind students attend schools where the teachers do not know Braille

Eighty-five percent, in fact. Most visually impaired and legally blind students in the United States receive their education in mainstream classrooms, many of them ill-equipped to meet their needs. Since so many teachers know little to nothing of Braille, this results in a reduced literacy rate and more academic struggles. 

·  Braille users write with a slate and stylus

Slates obviously differ in size, but the National Federation of the Blind states that 2x9 and 3x5 are the most popular dimensions. Writing in Braille using the stylus and slate system is pretty much exactly like its pen and paper equivalent. 

·  Braille and sign language are not interchangeable

Startlingly enough, some people actually believe that Braille and sign language are more or less the same! Braille addresses the needs of the visually impaired and utilizes the 6-dot system that, for everyday writing, requires a stylus and slate or Braillewriter machine; sign language comes conveyed via hand and arm movements benefiting the hearing-impaired. Individuals with both conditions use palm printing to communicate, which involves tracing letters on hands. 

·  Most legally blind people can read print

It’s a common misconception that the blind can only read in Braille, but reality says otherwise. With corrective lenses, magnification, large print, and other accommodations, 75% of the legally blind do just fine with books.

Friday 6 January 2012

Parody of A Vision Test

There is always a place for humour in training and for this reason I sometimes use the clip from the British comedy duo, the Two Ronnies. I heartily commend this clip because it introduces in a light-hearted and palatable way some of the serious issues, which face a visually impaired child. If you are a VI teacher I recommend it as it always goes down very well in training. The episode is called the Optician. Today I want to use the clip to hang a few questions on as we are scarcely into the New Year. Watch it - enjoy - and then reflect on the following questions. 

1.     What are the common difficulties facing a child with visual impairment?
2.     What modifications to the environment can help a child with visual impairment?
3.     What happens at an eye test?
4.     How important is it to wear your glasses if you have them?

1.     A visually impaired child has to deal with many challenges. These can be outlined from the clip as:

Difficulties with recognising people’s faces. Visually impaired children do learn to identify people by means other than their face, but not to see a face is a serious impediment, you will agree. The face is arguably the most interesting part of a person. Not to be able to look someone in the face or the eyes can create significant social awkwardness. I am not sure anything can compensate for this. Ronnie says he hasn’t been able to see his work colleagues for a little while now. This must surely have significant social implications. If you cannot see  someone well enough to identify them then you have lost a social contact which is so vital for many reasons and in many contexts. 

Difficulty in seeing their own face is also a big issue, depending on how visually impaired they are. Imagine not knowing what you look like? This creates difficulties in preparing yourself for being with people, such as for instance, washing, grooming your hair and adjusting clothes.

The obvious problems are mobility issues. In the clip Ronnie Corbett trips and stumbles, and almost injures himself by sitting on a sharp point. Not to mention drinking a cup of paper clips! It is so easy to forget or ignore the fact that a child who does not have good eyesight lives in a world of perpetual obstacles and hazards. He or she has to learn to get around independently without constantly relying on their sighted peers. Just getting rightly oriented is a challenge. I was walking to work a few months ago and a blind man with a stick, looking quite lost, appeared in my path. I asked him if he wanted help and he said he wanted to cross the road. He was simply facing in the wrong direction and I turned him towards the zebra crossing and let him hold my elbow and crossed over the road. He immediately recognised where he was. But because he had lost his orientation he could not work out where he was. Try closing your own eyes and walking around your house. It is not easy.   

2.     What modifications to the environment can help a child with visual impairment?

In the clip there was a very large orientation strip on the floor, which Ronnie Barker kneeled down on and crawled around to make his way.  This is an indication that signage and orientation markers need to be in place wherever there is a visually impaired child. I have noticed that on the pavement leading up to the big famous Moorfields eye hospital in London there is a wide painted strip. I forget the colour, it may be green. But it leads a person directly to the entrance of the hospital. A new school that is built should have certain basic accessibility features but it does not always happen. The stairs and steps ought to be marked on the nosings with contrasting colours. The handrails should be contrasting against the wall. The doors and frames should have strong colour contrast. These are a few points, as I have dealt in detail with this issue in a different post. 

3.     What happens at an eye test?

I am not too sure the clip gave a very good idea about this. But the distance test is certainly an important part of the eye examination. You should not give the subject clues really…! But I’m sure you know that! Identifying letters on a chart is a clinical test done in the hospital. VI teachers can do this with children in the home or in school. But what advisory teachers also do is the functional vision test. This is not done in the hospital because it is (a) not quite so objective (it is my ‘impression’ of how the child is managing); and (b) relies more on watching the child in a familiar (or unfamiliar) setting for an extended period of time. The hospital tests use precise tools and are performed by people well trained in using these tools. I have to admit that I did not get particularly trained in my mandatory qualification on the use of visual testing. I had to teach myself a lot of this. But I believe it is the role of the advisory teacher to test children’s vision. So if you are a VI teacher you ought in my view to get some training on this area. You cant be relying all the time on waiting for the hospital appointment.  

4.     Why you MUST wear your glasses

The last point in this clip is the pretty obvious fact that if you have been prescribed glasses you must wear them. Obvious? Not to a lot of VI kids I work with. Many children do NOT like to wear their glasses. And mum and dad have a struggle to get them to wear their glasses. But it is a struggle you HAVE to persist in. Some children like to have poor vision. It somehow takes away the strain of having to see things clearly and therefore to respond and react appropriately all the time. It also make them feel self-conscious with their peers who don’t wear glasses.  

Monday 2 January 2012

New Year reflections on working with a visually impaired child

What a rewarding job it can be to work with visually impaired children. I have the wonderful privilege of working alongside many dedicated teachers and support workers who are constantly challenged to think up ways of helping children to compensate for their visual difficulties. I am really grateful to Zoe who has written the following striking and delightful first article for the New Year on her initial experiences of working with a young visually impaired child in nursery, having had no experience beforehand. Zoe is a delight to work with and models best practice as far I am concerned. She is also very young, only just out of university.  This article just goes to show how it is a learning curve for all of us.  Out of our discussions together have come some quite innovative ideas and it has amazed me how Zoe has been able to implement these ideas and make them come alive in the learning environment. What an encouragement for all of us who work in mainstream schools and nurseries with very challenging children.  Thank you Zoe, for taking up time in your Christmas hols to write this article.
Challenges of Working with a Visually Impaired Child
Two months ago I began working in a nursery of 43 children as an LSA for a visually impaired three year-old boy - lets call him Mark. On my first day I was somewhat thrown in at the deep end, being introduced to Mark as his “new special helper” and then sent on my way to shadow him, helping him with activities and making sure he stayed out of harms way. Mark is a very energetic, happy little boy who absolutely loves riding around the playground on the school tricycle and scooter as well going up and down the slide as fast as he possibly can shouting “like a rocket!” repeatedly. In fact, his navigational skills in the playground are so advanced that you would be forgiven when meeting him for the first time for not appreciating the extent to which his vision is really impaired.  He is absolutely fearless. He does have accidents from time to time but not significantly more than any other three year-old. His parents have made a conscious effort to raise him this way, not wanting him to miss out or to be afraid of the world around him. When seeing Mark in action the benefits of this are obvious, although it does make my job rather more active! The flip side of this is that since his vision is so poor, he is often very unaware of the people around him and he does on occasion hurt his classmates when he gets overexcited. Part of my job is to help him to take more care when he moves around, for both his sake and the sake of others.

The fact that Mark does have some vision means that he has been raised and taught as a sighted child. He will attend mainstream school and relies on his vision before any of his other senses. I originally thought that this would make teaching him easier than if he had no vision at all, but it has come with its own set of difficulties. He is very tactile defensive and will not under any circumstances touch anything squishy such as play-dough and does not enjoy touching new things. His parents would like him to eventually learn braille in case his vision deteriorates further, which means an important part of my job is to build up sensitivity in his fingertips. I try to do this in a way that won’t overwhelm him. I have a bag of fabric squares which I ask Mark to put his hands into and match the fabrics using only his sense of touch. I also use a puzzle in which he must place different textured blocks in their appropriate positions. So far he is a little behind the rest of the group in his accuracy but this is to be expected and it is getting easier for him all the time.

While Mark is outgoing and friendly, he has been having some trouble making friends in his nursery. This isn’t to say that he only plays alone, for that is certainly not the case. He is happy to play with whoever approaches him, but his visual impairment has meant that it is extremely difficult for him to recognize and learn the names and faces of the 43 children playing around him, let alone form really solid friendships with them. Up until about a month ago, I had not heard him refer to any of the children by name. If somebody upset him, he would tell me about it but would only refer to them as “somebody”, unsure of who it had been. Learning the names of that many children is a daunting task for anybody, let alone for Mark. After discussions with the nursery teacher and with Maurice I carefully chose five children who I believe to be the most mature, patient and sensible in the nursery. Every day for around half an hour this small focus group and Mark join me in the ‘Quiet Room’ for a variety of activities with emphasis on developing senses and fine motor skills. All the children in the group love this and it has a very calming effect on Mark, since it makes a welcome change from the loud chaotic surroundings of the rest of the nursery.

I created a book with a photo of each of the five children’s faces including my own in A4 size which compliment recordings of each of their voices saying “Hi, my name is ___”. I hoped that studying this and listening to their voices would help Mark to recognize them in the nursery and in the playground. I did not anticipate quite how effective this would be! After only a week he could tell me the names of the children in the photos and had started to refer to a couple of them by name while playing. I plan to increase the number of children in the book for him to learn throughout this coming term.

There are times when Mark finds nursery a little overwhelming, particularly when he is tired. He can become frustrated and quite aggressive towards others, unsure of how to cope in his hectic surroundings. In times like that I usually ask him if he would like to go into the quiet room and read a story or play with his colour-changing orb light that he likes to hold and look at whilst telling me all of the different colours that he can see. After a few minutes he is usually calm enough that he can rejoin the rest of the group and play alongside them happily.

I am finding working with Mark incredibly rewarding, and seeing such fantastic results in such a short space of time is amazing. I am lucky that Mark is so bright and receptive and that I have been receiving such sound advice and support from Maurice and the nursery teachers – so I would like to say a massive thank you Maurice! I wouldn’t be able to do it without you. I just hope that I can teach him half as much as working with him is teaching me.