Tom's Visual Stress Story

Tom's Visual Stress Story

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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.

2021-03-31 21:14

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