This section shares the stories of how some parents taught their child with CVI to love books.
Books take you on a journey, whether it is through a story, or learning something factual. Books take you somewhere else.
Children with CVI love the journey a book can take them on as much as any other child. They may not understand the words, they may not be able to see the pictures, but you will see through these accounts that they still love the journey.
Books do not require language or sight to be magical. These accounts are not about teaching children to read, or even teaching children to speak, they are about children with CVI showing how much they love to go on magical journeys.
There are some wonderful kits available to purchase, where a story has added tactile props to help the child understand the meaning. These are about showing a child the meaning of the story as it was intended for children without visual impairments or wider disabilities. This is what we call an 'outside-in' approach, trying to help the child move from their own world, to the 'normal' world others occupy. This of course has its merits, but here we are describing an 'inside-out' approach, where the journey the book contains is in the child's own magical world.
Some of the children featured can talk, read and write, others cannot and some are considered functionally blind due to the severity of their CVI. Welcome to their wonderful world...
Books are at the centre of Lucy's life. She carries at least one with her most of the time. I have to stop her trying to take one into the bath!
Books are entertainment and so much more. They act like a window on the world. The best loved characters quickly become like friends and she doesn't tire of hearing about them.
We've just discovered an audiobook reading of The Tiger Who Came To Tea - the revelation is that this version gives the tiger a voice and introduces additional dialogue - truly enhancing the book. First time she heard the tiger talk she was rapt and highly amused! Just goes to show how important it is to bring the characters to life. Audiobooks are wonderful. Warning - some books have passages where people are sad or upsetting things happen- so you can end up causing distress unnecessarily, you need to respond to the child's reactions and be sensitive to their emotional needs.
We are all (in Lucy's family) experts at reading aloud. Books turn us, the readers into a radio voice*, and we practice and hone our 'out-loud' reading voices - if I say so myself, we are all pretty good!
When you begin reading books to an unsighted person it also gives you something meaningful to say when you don't quite know how to communicate or can't think what to talk about. It's a way to try to reach someone.
There's nothing as worthwhile as cuddling up together on a sofa or bed with a pile of books. Lucy's grandparents are especially good at this as they have more time and read very clearly.
It's also important to describe the pictures to Lucy.
Beware though - there are so many rubbish picture books - devoid of interesting language, characters or scenarios, just because it's a book doesn't mean Lucy will love it!
When Lucy learns a book by heart, like she has done with so many - it creates a world of imagination and friends that she can escape into. Just like we do.
Keep It Fun and Interesting
For example by asking simple questions like:
"Who is this knocking at the door? Is it a bear?" (No it's a tiger)
This provokes reactions including laughter, and with that reading becomes more of a shared activity.
Lucy loves the game of correcting mistakes in the recitation. If I am not not word perfect she will interrupt immediately and require an accurate re- reading. She's a perfectionist!
Also mis-pronunciations are great fun. Like saying "wabbit" instead of rabbit. Or "Granny made pancakes spread with mud" - instead of honey. Lucy loves correcting the errors of her elders.
Books have been fundamental to Lucy's language acquisition and communication.
They are also important for understanding the routines and social mores of daily life - and explaining the emotions of other people.
I recommend reading aloud to yourself - sotto voce - in the bookshop before buying. Even better if you can take the child with you. Visiting bookshops together is a pleasure. The good ones have a big box of books on the floor to be enjoyed by young customers. Sometimes tables or chairs or cushions.
*radio voice. Gordon Dutton in his Blog 6 discussed to importance of being a 'Radio Parent' if you have a child with a visual impairment. The language we use should allow for the fact that the child does not have the same level of visual information as those without visual impairments.
Bookshops and libraries, whilst normally quiet, can be very cluttered, which can be stressful and a challenge for a child with CVI. Some children like Lucy, who knows her local book shop well and is very comfortable there, may enjoy their time, but others may find it overwhelming due to the amount of visual information to process.
Connor (featured below) only liked one book shop which was spacious and spread out over a large high ceilinged area, although still could only tolerate it when it was very quiet, and only for periods of up to ten minutes.
It may be worth visiting local libraries, seeing how much space and clutter there is, and asking about less busy times.
Katherine is still unable to read, but enjoys people reading to her. She prefers stories on her iPad app - 'Farfaria,' which we pay a small monthly subscription for, or stories which are on Youtube. These work better than actual books, as they prevent her becoming frustrated, as she insists on trying to turn a page before you get a chance to finish reading it. Also pictures are greatly important, the more clutter, the less she's inclined to pay attention to the actual story. Her favourite books are, Sleeping Beauty, Cinderella, Snow White etc. She also loves We're Going On A Bear Hunt!
Katherine will look at a book and make up her own story, not necessarily relating to the pictures she is looking at.
Connor has always loved nursery rhymes, and we had a CD that played endlessly in the car. Amongst the tracks was children chanting the story 'We're Going on a Bear Hunt'. At home I decided to see if he might like a DVD version of the story to watch, which had a musical background.
Connor's reaction was strange, he kind of liked it, but wasn't sure. Connor is registered blind, and the images (which are fine and in pastel colours) would not make any sense to him. Also, it was moving from a purely auditory experience, to an auditory and visual experience, with different voices. We helped the transition by singing along to the story, something we also did in the car, always to his delight. Over time Connor accepted the story on DVD, but always preferred it on CD. Next, we got the book, and using the same consistent variable, which was us singing the words of the story, he very quickly made the connection and loved what had become story-time. Apart from it was only this story. We tried to introduce other books but he wasn't interested, for over a year. However, with time, very slowly he learnt to accept new books, starting with those that had a lot of repetitions like the That's Not My... series. Next came Hairy Maclary from Donaldson's Dairy, with each character having its own particular accent. The latest is Dear Zoo, the lift the flap version, and Connor seems genuinely surprised when there is an elephant, and always laughs at the monkey.
Connor doesn't understand the language or the pictures, but he knows these stories inside out. Where they take him I don't know, but its somewhere wonderful, and that's all that matters. I know Connor knows the stories, if I come into his room and start saying the words to Bear Hunt, he will go to his box of books and pull out the correct book, then snuggle up with me to read it - he particularly likes whoooo whoooo sound I make of the snow. Connor also loves musical books with nursery rhymes and quickly masters the buttons, a particular favourite plays the music to 'The Wheels on the Bus'.
Connor's books are Connor's books and we are not precious about them. He chews them, tears them, throws them around and bends them. I use thick black tape to repair them and they go back into circulation.
At school the teachers tried to use a system called PECS (Picture Exchange Communication System) where pictures were used to show him how to communicate. Daniel was completely non-responsive to this approach, and I was told that he couldn't progress any further until he had understood the PECS system. It never happened, and so it might be reasonable to assume that Daniel would not like picture books, so how do you explain this...
This photo of Daniel (above) was taken in my bedroom around 1130pm.
He was watching his giggle bellies songs on his iPad, in the middle of the bed cosied under the duvet with his knees up and totally relaxed. I lay across the bed in an attempt to read a few pages of a book, however just like when I try to use my phone or computer, Daniel got really angry at me and only stopped complaining when I closed the book and lay beside him on the bed. I thought initially it was because I wasn't giving him my full attention. I then sat up a few moments later and said in frustration, "why Daniel, why can't I read while you are relaxing enjoying your iPad?" He looked up at me and sighed and turned his head away from me looking sad. There was something in his expression that made me think he felt resigned as if 'yet again mum you don't understand what I'm saying.' Then a thought hit me, I ran through to his room and picked up one of his books (all of which he shows no interest in) and I gave him the A4 sized book In The Night Garden. He grabbed it off me and he beamed a huge smile at me. Immediately I felt I had got it right. I lay again over the bed and after a few minutes having the book in one hand and still watching his iPad, Daniel picked up the book with both hands, and moved his beloved iPad to his side, he gave out a sigh and smile at the same time. Daniel then drew up the duvet, brought up his knees and very deliberately opened the book and placed it on his knees and started looking at the page. This was my cue to lie again over the bed beside him, pick up my book and I actually got to read a few pages.
Daniel was trying to tell me that he wanted to do the same as me, look at a book!!!! I have often felt that Daniel is annoyed at me because HE thinks I'm stupid!! And he would have been right. Now I take a little more time to reflect on his signals as opposed to reacting to his negative behaviour, and for this he appreciates me more.
I'm listening to him speak through his voice and actions as opposed to looking at him through the "autism goggles ".
The PECS system had no meaning to Daniel, but that clearly didn't mean that pictures have no meaning.
These lovely accounts are all very different, and show that there isn't a single approach that fits all. As Gordon Dutton once said:
'if you've met one child with CVI, you've met one child with CVI'.
When seeking accounts for this feature, one mother shared a different experience, of a child with CVI who did not share the same love of books.
Reading for Amelia has always been a trial and something she does not enjoy.
Amelia's bedroom is full of books, as she loves collecting them but tends to stick to one or two books that she knows inside out.
Reading for Amelia is a struggle and what I have found is that the act of reading tires her to the point that she loses the story as she is concentrating so much on the words, trying to verbalise, trying not to skip lines or skip sections. As a result she becomes dis-interested quickly.
I read to her and she follows my finger along the lines (I'm not sure if she can see the words). Amelia will memorise what I am reading and will come back to the book at a later point and will read it or at least try to read it and will use recall.
What I mean is she won't recall it word for word but will have a general concept of the story.
Amelia loves turning the pages of books and will study pictures in the books but won't read until pushed to do so, I think its uncomfortable for her.
To get around this we make stories up for Amelia, we cut out pictures of familiar things or characters she likes and we stick them in a scrap book.
Amelia then tells us a story from the pictures and we write it down.
A few blank A4 pages becomes a wonderful creative experience for her and she keeps the pages in her room and will return to them regularly.
This is something I found also works with speech therapy, as I include words that she finds difficult.
I have also used this method to teach her about emotions and other issues that crop up.
It's basic but it works.
Amelia is 11 years old but her reading skills have been assessed as around 8 years old and progressing is a struggle.
I feel traditional reading in school does not work for Amelia, as she is aware of how slow she reads.
Amelia is without a doubt an audio learner and I can't foresee that changing.
It is important, to further understand CVI, that we feature and consider all accounts, including those with experiences that are different.
We see two separate areas in this account of Amelia, one is in relation to the story which she seems to love, and learn and try to re-create. The other, quite separately, is around reading skills, which is challenging and not so enjoyable.
We have asked Amelia and her mum to conduct a little experiment for us. Another eleven year old girl selected a book for Amelia, because whilst Amelia might have been assessed as having a reading level akin to an eight year old, she's eleven (not an eight year old in and eleven year old's body).
We have asked Amelia and her mum to agree that this book is all about being read to, and Amelia will not be reading any of it, just listening and enjoying, probably with a cuddle. Of course, Amelia and her mum can discuss the story and illustrations, but this is not about reading for Amelia, it is about the story.
Imagine going out for a delicious meal and ordering all your favourite things, but having to have a spoonful of something you don't like every few mouthfuls. Soon, you may prefer not to go out for the delicious meal at all, as it has been spoilt. This is what we are considering may be the case for Amelia, that the less enjoyable reading is ruining the potential pleasure of books. This is not unique to Amelia, we have seen and heard this many times around reading and spelling.
We don't know what will happen, but consider:
Update on Amelia's progress to follow.
We are in the process of developing tools and support to help with reading for children with CVI. Please check out Updates section where it will be added when available.
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Update 20 August 2017
Amelia's mother wrote
The book arrived, Goth Girl.
The excitement was incredible and the moment Amelia had the book in her hands, she studied the cover, smelled it, opened it and looked at the pictures.
"Can you read it now mum?" she asked.
I told her I would read it to her later and she looked disappointed, so I gave in and read the first chapter.
My intention was to read while she sat and listened, but she wanted to look at the pages, words and pictures as I read, so I let her.
Amelia is 11 and after two or three pages it was clear to me, from the many questions she asked, that the language was a bit difficult for her.
" What does that word mean?"
"What does that mean?"
But I continued reading, and explaining when she asked about difficult words.
At the end of the first chapter I was a little sad when I realised that Amelia was not up to this level of reading, her peer age, but I quickly banished that thought!
Later that evening Amelia sought out the book and asked me to continue reading, so I did.
Although chapters 2 & 3 made her giggle, I noticed Amelia was trancing at times, where she seems to zone-out. Amelia goes into this trance like state when she is both processing something, or not processing at all. So, I got Amelia to switch from a lying to a sitting position and placed the book slightly to her right (where she sees better) so she could see it in my hands and I continued reading. Amelia immediately tuned back in and asked me to explain the picture, which was a map of a castle. I did.
As I read, Amelia kept bringing me back a few pages to ask questions, almost as if she was confirming what I had read in her head, so I re-read a chapter and she said
"I get it now, I do understand it".
The story continues, I use different voices for the different characters and Amelia is giggling.
I realised quickly that maybe Amelia has previously associates books with the challenges of learning to read, which is difficult for her. This type of reading, where Amelia is being read to and only has to listen, is fun, there was nothing to learn here, only to listen and enjoy (my theory). Once Amelia realised this she became totally engrossed and wanted more and more.
I placed the book at the end of her bed that evening and I knew she was looking at it when we went to her room, so I asked "Will I read another chapter now?" I got no reply so I left it, as she showed no interest which I found odd. The next day I decided to bring the book downstairs and again I left it on the kitchen table so she would see it.
"Will you read the story to me?" Amelia asked.
"Of course I will" I replied, and we sat on the sofa and I read and read.
I thought about why Amelia didn't want the story read at bedtime, and the only reason I could come up with (without over-thinking) was that Amelia associates bed with sleep, and associates reading with sitting on the sofa, associates kitchen table with homework etc. In the same way, she associated books only with learning to read, not being read to.
I thought it would take a few nights to finish the book but it didn't, once Amelia realised that mum reading to her, just for fun, was all that it was, she realised reading wasn't a chore (which is what Amelia associated reading with). I believe Amelia needed to understand that books are fun and not always for learning. This I will work on and it's something I needed to realise as her mum.
Once we finished Goth Girl, I let Amelia chose a book from her collection. Normally she would seek out the same three of four books which have larger print and colourful pictures, but instead, for the first time, Amelia picked a book about Princesses with small print and multiple mini stories.
Amelia's grandmother has enrolled Amelia in the City Library, a place Amelia loves to explore.
Amelia's love for libraries always confused me but I had a penny drop moment the City Library has a quiet, peaceful atmosphere with no background noise or competing conversations. Amelia has a cerebral auditory impairment, and this environment is perfect for her.
If only we could live in a library!
I realise it is important that parents know to not give up. Had I not been set this challenge, in honesty, I would have continued as I was, that is, only using books to make Amelia read to me. I knew Amelia loved books, loved libraries and loved touching books but as reading was so difficult, I never really understood why.
Amelia now asks for her beloved books to be read to her. So, I no longer look for books that I know she can see or make sure pictures explain the scene. I pick a book and simply read.
Amelia has always collected Children's Fun Magazines, she would cut out pictures from them, look at the pages but would never read them. We recently visited Amelia's friend, a long car journey, so on the way I popped into the shop and bought two magazines for the girls and headed off. It was on the return journey that I noticed Amelia was particularly quiet. I asked "What are you up too back there?" and was surprised by her reply...
"I am reading my magazine" and she began to read out loud. It was clear and I understood her. That was a first. She used the light from her mobile phone to help her see, without me telling her to.
Amelia is learning but more importantly she is understanding that she can make simple changes and reading can be fun.
This little exercise has made me realise that there is more I can do with simple adjustments, I just have to figure it out.
One parent, on reading this account, made the following suggestion:
When reading to my children, reading ahead of what I was speaking, whenever I could see words or material I knew was beyond their ability to understand, I incorporated the explanation in advance of reading the material itself, in such a way that the explanation was simply part of the story
It seemed to work well.
Parents can always be their child's principal teacher because they are totally in tune with what their child does and does not know.
In this account, Amelia's mother wrote:
"This type of reading, where Amelia is being read to and only has to listen, is fun, there was nothing to learn here, only to listen and enjoy"
However, what Amelia's mother goes on to describe is so much more. It is clear that through reading to Amelia, Amelia is learning new words, and with that developing further language skills. Connor's mother reflected:
I read to Connor and he understands neither the words nor the images. Separately, I am on a journey teaching Connor to speak. It seems so obvious now, that through reading I am also teaching language - words he may not be able to attribute to a particular meaning now, but through reinforcement they are becoming familiar, and as his talking develops (talking being a different skill to language), these known words somehow get stored in his temporal lobes where they can be accessed later when they are explained.
Amelia's mother's account highlights two important points for all parents of children with CVI, but particularly where there may be profound disabilities:
1. Beyond the fun of reading, there is a purpose, language development, even for children who appear unable to speak.
We all have our own store of words, our own active vocabularies. This is what our child learns language from. Books contain many words we don't tend to use, but understand because they are in our passive vocabularies.
Reading puts these words into our children's vocabularies too.
2. Amelia's mother figured out some of the obstacles, that may make a parent incorrectly assume disinterest or failure, like Amelia not being interested in her story at bedtime.
Parents need to see that a child who does not respond doesn't necessarily mean they should give up. Instead we need to figure out how to make story reading fun, exciting and motivating.
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