October is Dyslexia Awareness Month and I came across this story on the web – and it sounds like things are very similar in the US to here in the UK. Let’s hope we get to see this film (Dislecksia: The Movie) in the UK soon…….
This Summer my daughter spontaneously wrote and performed a song for me.
She’d had a really hard time with her Year 5 teacher who didn’t really seem to understand dyslexia or the need to build children’s self esteem and encourage them with positivity. In the end we just agreed that it was something she was going to have to grin and bear and get through as best she could. We joked about it and I gave her a reward at the end of the year for surviving and getting a good report. The song told me that, although it had been a difficult time for both of us, I must have been doing something right : )
You helped me through some lows.
By picking me back up again.
You’re the one for me.
Mum. Mum. Mum. Mum.
Mostly with being dyslexic.
Because of some teachers.
You’re the one for me.
Mum. Mum. Mum. Mum
M-Y M-U-M. Mum
One of the great things about living with dyslexics is that they never fail to surprise you (I’m sure this happens in other families as well, but I don’t have experience of them….) This Christmas both my husband AND daughter have surprised me for very different reasons.
Firstly, my husband got a tablet for Christmas. He needed one for work (and I was keen for him to have something that he could carry around with him that might help him to be more organised, particularly after the recent fiasco when he forgot to pick our daughter up from school, but that’s another story….), however he also announced that he’d like to be able to use it for reading books. This in itself wasn’t the surprising thing as my husband is quite an avid reader (although with a fairly narrow repertoire of science fiction and science fantasy, and is most comfortable reading young adult fiction). And he’s also a very slow one: He tends to average only a couple of pages a night and so it can take him 6 months to finish a complete book, and he’s been reading the same science fantasy series for the last 25 years! However, what did surprise me was that as soon as he’d got a reading app he started searching for free books that he could download, and plumped for a selection of classics like The Scarlet Pimpernel and Sherlock Holmes. And first on the list for him to read was Pride and Prejudice! Now this is one of my all time favourite books and my husband has enjoyed the various TV and film adaptions (so much so that on several occasions I’ve caught him watching a repeat of Colin Firth and Jennifer Ehle on some obscure channel!), but I never ever ever in my wildest dreams imagine that he would read it himself! But not only that, he finished it in less than a week, got at least some of the wit, and enjoyed it!
Secondly, my daughter was chosen to play the main part in her school’s Christmas production. Again, this in itself, wasn’t too much of a surprise as her ambition is to (follow in the footsteps of her dyslexic hero, Kara Tointon) and become an actress, and she was determined to get a part. What was astonishing was the fact that she seemed to learn and remember the part by complete osmosis without any effort at all! And in fact, she learnt the whole show off by heart, so much so that she mouthed everyone’s words as they said them and could prompt them if they missed their cue! Incredible! And I still don’t know how she did it!
I had been equally pleased and apprehensive when she got the part as short term memory is one of her main weaknesses and we have had endless traumas with learning things like times tables and spellings, but somehow she managed to bypass this completely and commit everything to her long term memory, I presume because of the actual physicality of acting and not just reading and saying the words.
Her next challenge is a small part in Romeo and Juliet at the local High School in February, so watch this space….
I went along to this session at Mumsnet Blogfest on Saturday hoping that it would inspire me and show me that blogging can change the world: I blog about dyslexia and one of the reasons I do that is because I think that things do need to change and that the more people talk about it and work together to highlight the issues then perhaps, maybe, something might get done. That’s why I think initiatives like dyslexia awareness and information group, Parent Champions, are important and why I supported the British Dyslexia Association’s recent e-petition calling for mandatory special needs training for all teachers. But the big question I wanted answering was should I be doing more?
It turned out to be a very poignant and topical session with the day being declared Malala Day (in honour of the Pakistani teenager who was shot in the head for campaigning about education for girls) and Panel chair, Rosie Charles from Save The Children started by encouraging everyone to sign the online petition for Malala to be nominated for the Noble Peace Prize.
What I took away from this panel discussion (and from the day as a whole) was:
- the fact that blogging in itself can’t change the world, but that together with other social media it is now a key element in raising awareness, gaining support and momentum, mobilising people and promoting change.
- It’s a particularly useful tool for women to have a voice and be heard and is helping to make feminisim and other previously marginalised causes mainstream
- Things are still developing and evolving but there are opportunities to be had
- Women have a variety of diverse voices and want to talk about everything from knitting and sewing, to science, business, politics, feminism and human rights – whether we have children or not
- As a blogger I can be part of a wider debate and a force for change
Here’s my summary of the panel discussion:
The panel consisted of Rosie Charles from Save The Children, Naomi McAuliffe from Amnesty International, Holly Baxter from The Vagenda, Lynn Schreiber from Salt and Caramel, feminist writer, Natasha Walter, and MP Stella Creasey.
Naomi said that blogging was a key tool for the activists and prisoners that Amnesty helps and supports. She said that blogging definitely has it’s place and that it is hitting a nerve with certain regimes.
Blogging is important in the fight for human rights: It gets information out that people may not generally have access to, however it’s not the full story, because in places like Syria, only 20% of the people have internet access. However, it’s certainly something that repressive governments feel is a threat and that they’re clamping down on – in Syria, 2 female bloggers have been convicted of spying simply because they’ve been blogging about what’s happening in their country. Revolution happens because people are out on the streets but blogging gets the message out to a wider and worldwide audience and particularly to women who might not be allowed out and to join in and for whom it might be too dangerous. The problem is though that having access to this information makes us feel like we’re involved, but actually we’re just witnesses and can’t be involved – it doesn’t actually make any difference if we change our avatar to show our support for a particular cause.
Blogging is very accessible and can be the only way to get your voice heard when there’s no freedom of expression, but it is more powerful if it’s combined with other activism as well. A blog itself doesn’t change the world but it can play a part.
Holly explained how Vagenda, which works to expose negative and cynical content in women’s magazines, took off in just a week (and gained 60,000 followers in just 24 hours!), and that the power of social media has allowed them to take on and challenge the mainstream media in a way that they wouldn’t normally.
They only launched their site when they had 20 articles ready and were confident about their theme, niche and remit. They also made sure that the site had minimum clickability (i.e. you click on an image and get straight to the article) and maximum shareability (i.e. a third of their content is images which can be easily shared). They then used social media like Twitter and Tumblr to specifically target teenage girls. From there everything grew quite organically (even without social media at first). Her tip for success is to get your content right and know the right social media for your demographic.
Lynn has helped Mumsnet with awareness campaigns or miscarriage and rape awareness and says that blogging gives people a voice who haven’t had one before and that it can be very powerful.
For Lynn blogging is about raising awareness: She blogged about reproductive rights in Kenya where women walk for 2-3 hours to clinics for reproductive implants only to get there and find that they’ve run out. By blogging she could let people know about the need to help women take control of their reproductive health and in turn make decisions about life and families and give them choices about education and work and play a part in lifting them out of poverty. She wanted to highlight the fact that this is something that isn’t an issue for us and that we take for granted – we just make a decision and that’s that, however, many of these women particularly want an implant so that they hide the fact that they’re using contraception from their husbands.
By blogging about these issues and raising awareness pressure can then be put on governments around the world to get involved and do something about it and in this case there was a summit where various governments pledged money to help. Blogging didn’t bring about the change, but it helped put it on the agenda when decisions being made. It can be used both to help lift whole counties out of poverty and hold people to account for their actions.
In particular, women writing for women about women is very powerful.
Natasha said that she was a very late adopter of social media and that she had been very sceptical about the internet and women’s rights. She said that she had initially found it to be a hostile environment, but that had changed over the last couple of years (since the publication of her book, Living Dolls) and that she felt that feminist debate was now mainstream and no longer marginalised. She was particularly inspired by how young women were making feminism concrete and real and how bigger brands and sites like Mumsnet were bringing the debate to the majority. In particular, she works with a charity for refugee women and felt that blogging was vital in helping them make sure that the voices of marginalised women were heard because the mainstream media weren’t necessarily interested in those stories.
She said that if we look at history of feminism, it has always worked on different levels, from the local to the political, and that it’s a process that has to take place in all of society. We need people to join in the conversation and collaborate and make it more powerful so that the media and politicians will start to take notice. We all have a part to play in that process and blogging and social media can help us do that.
Stella said that she didn’t blog, but did use other social media in her campaign work. She said that it allows her to connect and interact with people but that she felt that we should still be doing that in the real world as well. She agrees that social media is helping to rebalance power, make sure that people are heard and provides a challenge and accountability for authority, but got annoyed when people said that the Arab Spring was created on Twitter: she sees it as a tool that can mobilise people to great effect, but that it was what they were writing that was powerful, not how.
She talked about a particular case in her constituency of Walthamstowe where there’s a doctor who refuses to offer any sort of contraception. Traditionally as an MP, people would come to her and complain and then she would talk to the health care trust and pass on their complaints, however, their response is that people can travel to another area to get contraception. So instead, she’s working with group of women to start a campaign and a conversation about health care issues as a whole, which includes this as problem as one element, but covers a whole range of needs and women. She sees what she does and how she uses social media as being about getting people engaged in the process, working together, and contributing to changing lives rather than government.
- Smaller campaigns need to collaborate with bigger platforms like Mumsnet or bigger name charities to get themselves heard
- The traditional media is now on the back foot and is looking for new audiences and so there are opportunities to get stories covered if you have a good hook and a particular angle – for example, editors will be more receptive to a story about new technology rather than a campaign by a ‘mummy blogger’.
- Make use of big stories and trends like women in sport and disability sport from this year’s Olympics to get your story heard
- Raising awareness in itself doesn’t necessarily make things happen – you need to choose your battles and think strategically and make sure you put your spin on everything you’re doing
- Be clear about what you’re asking for rather than just complaining – it’s easier for someone to take on a cause and make something happen if you have a clear proposal and people can understand how you want to make a difference, what the story is and what change needs to be made.
- The mainstream media still has a role to play, particularly where there are legal implications to a story and where people need to be anonymous. Make use of their investigative skills
Campaigns to Follow
- http://www.onebillionrising.org – campaign against violence towards women
- No More Page 3 - https://www.change.org/en-GB/petitions/dominic-mohan-take-the-bare-boobs-out-of-the-sun-nomorepage3
- Nominate Malala for a Nobel Peace Prize - http://www.change.org/en-GB/petitions/uk-party-leaders-and-foreign-secretary-nominate-malala-for-the-nobel-peace-prize-nobel4malala-2
Another mum (in Australia) who has discovered Irlen Syndrome and the benefits of coloured lenses and overlays for her child. When it works, it’s almost like magic! My daughter is waiting for her latest lenses (her 4th colour since she was diagnosed, age 5) – she’s gone from red to blue to paler blue to a more purpley blue, and each time she’s had a new colour we’ve seen her blossom and grown in confidence and ability and and make huge leaps forward in her reading and writing ability – last year she went up 3 reading levels at school (to become a free reader) and became the first person in her class to get a ‘pen licence’ (meaning that her handwriting was good enough to move from using a pencil to using a pen).
I can’t wait to see what happens this time……
When I talk to parents with children who they suspect have Dyslexia I generally hear the same story. Problems with letters, numbers, counting and words when they were four or five. They couldn't print well but often very artistic especially for their age. Sometimes they started talking later than other children and had speech difficulties such as lisps, mispronunciation of words more than other children, couldn't remember simple words so would say "thing-a-ma-jig", "whatcha-ma-callit" or use the wrong word.
I love this interview with Ross Linnett, one of the many entrepreneurial dyslexics who see only solutions rather than problems and boundaries. I think this is one of the side effects of having a non-linear brain – it allows for creativity and leaps in ideas and thinking. He reminds me very much of my husband who also hasn’t let his dyslexia hold him back: He too did engineering and then discovered a natural affinity for programming and and innate understanding of business. He too, has gone into cloud computing and seeing a gap in the market, founded a successful cloud software company, Liquid Accounts Ltd. And now he advises and works with companies like Ross’s to help them develop and grow.
I completely agree with this American mum’s point of view that (early) diagnosis is crucial for kids with dyslexia. Her experience is very similar to my experience with my daughter. My worry is that everyone in the ‘dyslexia community’ all over the world seems to be saying the same things, but this isn’t being addressed in our education systems. How do we get things to change?!
This week I featured (together with my husband and daughter) in an article in the Yorkshire Post about Irlen Syndrome (also known as Mears-Irlen Syndrome or MIS). And even though, I’d agreed (several months ago) to do a case study for the Irlen Institute in the UK (we’re unusual because the whole family wear the coloured lenses normally associated with dyslexia) and had subsequently agreed to do an interview for the Yorkshire Post, I still found it strange seeing our story in print, particularly because I’d never actually admitted before (even to myself) that I had Irlen Syndrome…..
Compared to my husband and daughter, who quite simply couldn’t read before they got their glasses, I feel like a fake and like someone who’s ‘jumping on the band wagon’. I’m not dyslexic and haven’t had nearly as many problems as them, but then again, I do feel far more comfortable wearing my coloured lenses, which is why I’ve had the tint added to my prescription lenses and why I wear them all the time. I can now see in 3D and don’t bump into things as much, I can drive for unlimited periods of time without feeling tense, stressed and tired (it took me nearly 4 years to pass my test and then on one of my first solo outings I wrote off my mum’s car!) and I now do most things (comfortably) on screen (whether it’s my laptop, iPhone or iPad). I’m currently writing this blog on my iPad (on which I’m also writing a novel) and I now read 90% of my books and newspapers on it.
Interestingly, Celia Stone from Irlen North-East (who tested all 3 of us) is currently working with a driving school to test people who struggle with their driving, so perhaps I’m not the only one who has issues that aren’t to do with dyslexia, but that can be helped by a bit of colour. I do though believe that I’m a right-brain thinker (like both Matt and Molly), and so maybe that’s where the overlap lies……
In summary then, I think there are 3 issues here, and they are that:
1. Dyslexia isn’t just about reading and writing – my husband and daughter struggle as much if not more with problems with short term memory and concentration. However, neither would have been able to learn to read and write (my husband had the reading/writing age of a 6-year old when he was 18) without their glasses.
2. Irlen Syndrome isn’t just about dyslexia – just under half of dyslexics also have Irlen Syndrome, but it’s fairly standard now for all dyslexics, and most suspected dyslexics in school will be given a coloured overlay to use.
3. We still don’t really understand these condition and how they relate to each other and overlap.
Here’s the full article:
Lenses Opened Up a New World to Family With Rare Syndrome
All three members of the Holmes Family suffer from Irlen Syndrome. Catherine Scott finds out the condition and what it is like living with it.
People may look twice at Matt and Lisa Holmes and their daughter Molly in their blue-tinted glasses. But this is no fashion statement.
The Holmes family from Huddersfield have all been diagnosed with Irlen Syndrome – a condition which makes it dificult to read and write without the coloured lenses.
Matt and Molly, who will be nine later this month, are also dyslexic. But Lisa is nt and she only discovered she had Irlen when she was doing a test for the condition with Molly.
‘As I went throught the questions with Molly I kept answering ‘yes’ to a lot of them myself. So I started to wonder whether everyone had a little bit of it in varying degrees. But Celia Stone who was doing the test said not and after testing me said that I had it.’
Lisa suffered from sever migraines and struggled with bright lights and reading on a computer screen, quite a handicap for a journalist and TV producer.
‘As son as I was given the blue lenses everything changed. The headaches went and now I use an iPad all the time, even for reading newspapers, something I couldn’t have done before. I wear the glasses all the time and it has really made a difference to my life.”
Matt is a successful businessessman. He was a director for a London law firm before setting up award-winning online accounting software pionneer Liquid Accounts. He left Liquid Accounts at the end of 2011 and is now a consultant.
Not bad for a mand who couldn’t read a book until he was 18.
‘I really struggled at school’, he explains. ‘I was kicked out of primary school at the age of sven because they said they couldn’t teach me.’
His parents had no option but to send him to private Woodhouse Grove which had a special dyslexia unit run by Celia Stone.
At the age of 18 he’d been kept back a year and was still taking his O-levels with no prospect of going to university and was contemplating becoming a gardener. But Celia changed his life.
‘She was just learning about Irlen. She suggested that I take the test for the syndrome.’
Getting his first pair of tinted lenses was the start of Matt’s education.
‘I manage to read my first book at the age of 18′, he says.
‘At school I had managed to find ways around my dyslexia. I couldn’t spell the number eight and so I would find ways to avoid using it. Even after school I avoided writing cheques for that reason.’
He retook his exams and passed, before moving to university to study engineering and then a degree in Computer Science and Management.
‘It was strange doing engineering as there is a lot of maths in it. I could understand the thearoy and the more advanced maths but I didn’t have the basics.’
When Molly was born, both Matt and Lisa monitored her development for signs of dyslexia.
When she turned five they realised she might have a problem when she told them that the words were moving on the page – a common symptom of Irlen.
‘We knew there was something wrong as she just didn’t want to go to school’, says Lisa. She was tested and given Irlen lenses which she has to have changed every year as she develops.
‘She started with red, then green and is now on blue’, says Matt. Now Molly ovess to read and is above he reading age. She is more than happy to go to school and is exceeding all expectations.
But the Holmeses are still frustrated about the lack of knowledge among teachers about Irlen.
‘Even the special educational needs teacher at Molly’s school didn’t realise that Irlen was linked to her dyslexia. She said it was a vision problem but it is much more than that’, says Lisa.
‘I have done a lot of research into dyslexia and Irlen and we are backing calls by the British Dyslexia Association for teachers to be made more aware of it.’
As for Matt he sees Irlen as different from his dyslexia.
‘I try not to let it bother me too much. Dyslexia is what’s formed me and no I wouldn’t have it any other way. You are never cured of it, you just learn to live with it the best way you can, and that was why we wanted to make sure that Molly was caught early.’
Living in a house full of dyslexics is challenging, says Lisa who writes a blog, http://www.blessedarethecheesebrains.com, about it.
‘Cheese brain is the phrase coined by Matt and Molly abobut their brain being wired differently to mine’, says Lisa.
The hardest things is their lack of short term memory. I once asked them to go to the shops for me. We only needed four things so they decided to remember two each. They came back with three things because no-one could remember the fourth. That’s what I have to deal with all the time.’
Matt accepts he processes things differently from other people.
‘On a positive I am able to look at things from a different perspective when it comes to problem solving, although it did take me until I was 33 to work out how to put a key in a lock and unlock the door. When I eventually thought of how it worked from an engineering perspective I got it.
‘The other day I was helping a friend put up a gazebo and there were no instructions, so my friend said there was no way we could do it.
‘I thought about the pieces we had and built it in my head and within minutes we had done it, so there are some advantages.’
Matt knows that he and his family owe a lot to his early school teacher, Celia Stone.
‘Without Celia I would never have been able to go into higher education so who knows where I would be now!’
Living with Irlen Syndrome
Irlen Syndrome is a specific type of perceptual problem that affects the way the brain processes visual information. It is not an optical problem.
For those with Irlen Syndrome, the brain is unable to process the full spectral light. This results in:
- a range of distortions in the environment
- a range of distortions on the printed page
- physical and behavioural symptoms
It is exacerbated by environmental factors such as lighting, brightness, glare, high contrast, patterns and colours. Irlen Syndrome affects people of all ages.
For more information visit www.irlenuk.com