Tom's Visual Stress Story
if you or someone in your family struggles with learning difficulties and you are searching for something to help then what tom and his mother went through may sound very familiar Tom has visual stress a visual perceptual processing problem it is not a learning disability or an attention disorder but it can contribute to learning difficulties. This short film was produced by the researchers and organizations studying and advocating for visual stress in the United Kingdom but Tom's story is international and timeless we experienced a similar story in our family and you may be experiencing something like it in yours. So here's Tom's story Meet Tom he's a cheerful 17-year-old with a passion for sailing a mum called Sarah a string of GCSEs and a desire to get on in life. It all sounds perfect doesn't it and yet
intelligent Tom has struggled through school and from a young age his teachers expected academic failure. And why? You might be guessing he's dyslexic, you'd be right, but more importantly, Tom has a condition known as Meares-Irlen syndrome or visual stress. For him, this means the text on a page will multiply in a random unfocused way making reading extremely difficult and exhausting. If you've got a blank piece of paper imagine having the words on the piece of paper and then you look at it and then the original words are there but you've also got a copy of those words moving around as well on the page. Every time I look at some piece of writing it becomes
highlighted, it becomes I don't know it comes highlighted, comes sort of black around the edges black and sort of white around the edges. It comes off like whoa but at the same time it's out of focus it's blurred and you know it's moving about the page and you just can't read and I had I have to focus if I haven't got my glasses I have to had to focus 10 minutes and I was knackered because I've been putting so much effort into trying to read it. Once he got to primary school he found spelling quite difficult and they used to sit spelling tests. He'd come home with
homework to learn 10 spellings and he would find it incredibly difficult and he would come up with lots of excuses. I did wonder one day if perhaps he could be short-sighted or long-sighted. I thought it was worth getting that checked out and they didn't come up with anything at all in fact and i had lots of meetings tooing and froing with teachers at his primary school as to to to why he wasn't performing as as well as a lot of the other children in the class and basically I think as a mum I felt I was in the hand of the professional teacher who would say things like "well, he's a boy, he's a late developer, he's perhaps a bit slow on learning but it will come as he develops. I can remember all sorts of times where like going through a
book and not being able to understand it and I think I can remember just sitting there and crying you're just sitting there you're just looking at this book and it's moving about the page just sitting there crying. As you can imagine Tom's school life didn't start well, tormented by the page in front of him not understanding why. As hard as he tried the brick wall didn't move on top of this he was getting a reputation for being lazy, not bothering, an underachiever. I can remember we had to do an English test and it was something like a spelling test and we had to sit down and write and I remember I couldn't get all these words you know I'd go home and practice and I can remember half the words and I came back to doing it and I failed every, every single you know question and answer and I remember my teacher physically ripping up my book and throwing it at me, you know throwing it at me and saying this is not good enough, this is useless now you're going to fail in life. Dr Ralph Harkness is a leading psychotherapist. The embarrassment can be tremendous therefore you act out that embarrassment, you'll do anything to hide that embarrassment, your behavior will change, you might become naughty in order to take the attention of the teacher, or the parent away from my inability to read or to write because I just can't.
Once a week you'd end up getting shouted out by a teacher um it's very degrading and makes you feel worthless almost. By the time Tom went to high school he and his mum were at their lowest point. It was obvious there was a problem with Tom but they were still no closer to what that problem was until the family moved to Norfolk with a new local authority. It was purely by chance I stumbled across the sensory support service within the education section at the county council. Booked an appointment to to do an assessment of Tom and I raised the issue. I'm not sure if we're looking at Dyslexia or quite what, but there is something going on and at the end of it, the advisor said that she was very very concerned and she thought Tom was suffering from a condition called Meares-Irlen syndrome but she wasn't absolutely certain and felt that it needed some specialist input and referred us to professor Bruce Evans. Often when I first see the children they're in their early teens
or a bit before that and the child is often quite hesitant and quite lacking in confidence and it's it's important I think to try and get in the mind of a child who's struggling at school but maybe deep down knows that they're intelligent and they can understand what the teacher says but they have trouble coping with written material. It must be quite demoralizing for that person to constantly feel that they're failing when they might be working incredibly hard to try not to fail. And with Tom it's so great to see him now because he's such a such an articulate and obviously capable young man that he comes across somebody to me who's changed hugely over the years. Visual Stress is in fact a collection of a group of certain symptoms common to people with reading and spelling problems. Typically they experience distortion letters and words will move and jump
around the page the text might appear out of focus and often these symptoms lead to eye strain and headaches. The story really dates back a couple of hundred years when people were using coloured glasses for reading and they found that reading was more comfortable and less strained with those. But it could only go so far in those days because in those days glasses were made of glass, and colouring glass is quite difficult. In the 1980s an American psychologist Helen Irlen
said that she could treat this condition using plastic tinted lenses and nearly all glasses these days are made of plastic which are much easier to tint than glass. And this has really become popular in this country in the last 10-15 years since Professor Wilkins invented the Intuitive Colorimeter. The neurons in the visual part of the brain are firing rather too strongly causing others to fire inappropriately and giving rise to the perceptual distortions that children see.
And what colour does is to reduce the overactivity of these neurons because all neurons are not only coding the shapes that we see but also the colours that those shapes have and there's crosstalk between the shape computation and the colour computation. And the colour, in this case, is reducing the overactivity of these neurons enabling them to function more appropriately. The colour is very particular, each individual seems to need their own precise shade. Unless they have that, the distortions are not reduced to the extent that is necessary. Departures from
that optimum colour of a very small amount are sufficient to allow the distortions to reoccur. So each individual then has to have their own colour tailored to their needs and unless it is tailored to their needs it's not effective. With Professor Wilkins' invention of the Colorimeter, it was now possible to accurately diagnose the exact colour needed to filter out the overactive neurons in the part of the brain governing vision. What was needed was a research study where a group of people with the condition were given two types of coloured lenses individually prescribed so that each child had one colour that should help them and one that shouldn't help them so much. But the children didn't know which was which and nor did the teachers now that sort of research design was something we wanted to do and couldn't do until the Intuitive Colorimeter was invented because then that was an instrument that allowed us to do a properly controlled research study.
When I first put them on um or you know as soon as you've done all the trials and testing, you put the two lenses on and looking down at the page it was you sort of looked down and think how you know you saw I kept doing that when he put those trials or things I was like that's that's that's not right. I have to say, I sat outside the Opticians after the appointment and I just cried because I was so relieved to get a diagnosis, but at the same time I was horrified because it doesn't come under the NHS and had to pay for it privately and as a single parent that was you know quite a sum of money to find but you know it's your child you want to do your best by them and it was a question of looking at ways of doing that. The cost of NHS provision would be large but viewed in the greater context of the expenditure that was currently made on learning support on the cost to society of individuals who cannot read the cost to them their antipathy and subsequent imprisonment very often I would have thought that the glasses would end up paying for themselves. I mean they're fairly simple, relatively inexpensive when compared to drugs
and other medical interventions to me it's a no-brainer i mean it makes sense to provide them where they're indicated. Tom and his mum found themselves with another battle with money tight they took it upon themselves to push for NHS help to fund the glasses Tom now needed. After all, if he had had long or short-sighted vision the funding is there. Tom's MP, the liberal democrat health spokesman Norman Lam took up their case. Well it just seemed an extraordinary case where we have a lad who had been in all sorts of difficulties, hadn't been progressing at school, had been getting into trouble, was seen as a problem by schools successively. And yet once this diagnosis occurred and he got the glasses, his whole life was transformed. I
mean it was extraordinary and what impressed me was the fact that his mother and Tom wanted to go out and fight for change to ensure that others who might have this condition got access to testing and the glasses that can make such an enormous difference. We ought to be looking down every avenue to determine why a child is behaving in a particular way and just having seen the transformation that happened with Tom and the fact that he started to get his qualifications that he will now be a, you know, a valued member of society making a massive contribution. It's just so important that all children, irrespective of their income, get the chance to be tested if there is any hint that there might be a problem with their eyesight and with them having this condition. A problem with visual stress is that a sufferer is often caught between the health and education systems where neither wishes to take the lead. You have two different departments saying no it's your responsibility the other side you know it's your responsibility no one actually taking responsibility and it ought to be possible in this day and age particularly at the local level for health and children services, health and education to work together to find solutions without worrying about budgets. And I don't really mind too much where the money comes from I just think there have to be clear protocols that if there is a child in a school where there may be an issue of this sort then the funding has to be provided and there just needs to be agreement about how that funding is arranged. Perhaps pulled
budgets between health and education would make a real difference here. I also happen to believe that much closer working between health and local authorities at the local level is really important and you know it's not just with this condition that you get these problems it it quite often happens where a divide between two organizations with two different budgets actually creates a block to making progress. Our position is clear if any child is being held back in their learning can't get on can't do the best they can because of any kind of learning difficulty or physical difficulty then we should step in and do what we can to make sure they can overcome it so that they can do well. The visual stress is not something which can simply be solved by eyesight correction then we need to kind of get deeper into that see what more we can do get the experts working together with the parents to see what more we can do so that um like Tom, young people can make progress and go on in school. Well the NHS says that they do free eye tests for under 16s and if there is a special correction which is needed through glasses and that's provided free but if it's more than that, if there's um you know, if there's a greater complexity at the moment which is identified then we need to make sure we get education health working together to address those issues. The key thing to do is to make sure that in every part of the country you've got education and health working closely together this is a challenge in uh in a number of areas in speech and language therapy and making sure we intervene early with all kinds of learning difficulties but in this area if there's a problem which requires a combination of health input but also special educational expertise then we ought to be able to um to do that and to do it effectively. The issue of visual stress was identified in Jim Rose's
report on Dyslexia which he published earlier this summer which I asked him to do to look at that particular learning difficulty and we're going to be training 4 000 extra specialist teachers to get the training they need in Dyslexia to be able to then spread their expertise across local communities of schools and we need to make sure that part of their training is awareness of this issue the kind of early warning signals and what to to do so that we can get this out there into the community. If children are being held back in their reading or in their learning because of visual stress or other learning difficulties that we need to make sure they get extra help. For Tom and his family, the strain of first diagnosing his condition and the subsequent fight for recognition has been hard. It takes strength of character to take on the system. In any family if you have a stress there is the likelihood that that stress will cause a fatigue. When you get a fatigue in metal there's the likelihood that that metal will give when that gives the structure can collapse there is almost inevitably guilt somewhere other than in the subject's um psyche there might be guilt from Mom because she gave birth to this person who has this problem um or it might be Dad who who who thinks gosh, if only I had, why didn't we notice, why didn't I? And because I'm giving so much attention to this child am I neglecting the others and so it's for me it's very important that we work systemically with the family and help the family understand that this is not anybody's fault this is not something to be guilty or frightened about.
This is one of those things and and we deal with it and we we de-stress psychologically the visual stress that there is um optically. I suppose, it was a bit harder for my sister because you know the parents were always focusing on me and trying to get my grades up for my GCSEs for instance so two years trying to focus on me getting my you know doing extra revision doing whatever i could. At the time I think she understood you know she was at the age where she can understand you know they're not doing it because I want the attention they're doing it because if I don't get that help I'm not going to get anywhere in life.
I cannot really emphasize enough as a parent how important it is to fight for your child because if you don't nobody else will. And that fighting has truly paid off. In the summer of 2008 Tom achieved a remarkable 10 GCSEs including an A and three Bs and among this great achievement is a C in English. Not bad for a person predicted to get straight F's. Now Tom has gone on to further education
taking a BTec national diploma, with his eyes set firmly on a University place. He's very steady in the way he deals with you. You don't, I don't, I've never found Tom to be anything other than entirely straight you know there's no sort of mischievous complicated ways that he deals with people. He's, he's very straightforward and I feel that I've got a relationship with him where we can talk frankly and honestly and I really value that you know that we can talk about things and he can deal with any criticism or advice in a mature way so in that respect it's a you know a triumph really. Well from what I understand it's made a considerable difference to his life. And this is, he's not alone in this, there's a lot of individuals that see who who describe the lenses as life-changing.
Tom's story is simple, he got to the bottom of the problem, kept persevering and never gave up. With his visual stress now correctly diagnosed and managed, he can get on with life and go forward to a promising future.