Tag Archives: Irlen syndrome

My children and I have a condition that makes words move on the page – #100days100stories

Sinéad and her children have Irlen syndrome, a condition that affects the way the brain processes visual information. It’s a common condition – many people don’t realise they have it.  Sinéad has shared her story as part of our 100 days, 100 stories campaign

My two children and I have a condition that makes words move on the page. When I sit in front of a computer the screen seems to shakSinead, with dark hair and glassese in front of me. My son says the whole world is like a plate of wobbly jelly.

The most common name for this condition is Irlen syndrome but it also goes by Meares-Irlen syndrome, visual stress and scotopic sensitivity. It can exist as a condition by itself or alongside dyslexia.

Common difficulties include problems with reading and writing, over-sensitivity to light, problems differentiating between background and foreground in the environment, and a range of different physical effects caused by dealing with this, such as headaches, nausea, exhaustion.

Our experience of Irlen syndrome

My two children and myself all have Irlen symptoms. They affect us to different extents and in different ways.

My 10-year-old daughter finds the contrast between text and page the most difficult to manage.When she started using a coloured plastic sheet over the pages of her books, she went up three reading levels at school within a term. She also has coloured workbooks provided by the school, which she uses for her schoolwork.

Things that help upload

My eight-year-old son reads very well but likes to use a coloured sheet when there are harsh lighting conditions. He also finds writing on coloured workbooks much more comfortable.

The children respond differently to environmental conditions as well. My son says he has no problems with the class smartboard (a large interactive ‘board’ projected onto the wall of the classroom). However, he howls with pain if the general lighting conditions are too bright.

My daughter doesn’t seem to be too bothered by light, but he needs the background of the board changed so it isn’t white. This is easily done, and most of the children prefer the jollier colour.

I have terrible handwriting; not many people know this. I experience environmental symptoms the most – sensitivity to light, and movement in my vision between the foreground and background.

This means that for me, my tinted Irlen glasses provide the best relief. However, the lenses are a dark turquoise colour and I don’t like to use them too much in the office as my colleagues cannot see my eyes.glasses

On most occasions I actually use a green computer filter over my screen. This reduces headaches and makes it much easier for me to concentrate.

What can be done to help?

There are lots of adaptations that can be made, and many of them are free or readily available. For example:

  • Changing the background colour of the interactive whiteboard in the classroom
  • Using the minimum amount of artificial light in the classroom or workplace
  • Using computers and social media  to communicate instead of handwriting
  • Coloured or tinted exercise books, overlays, reading rulers and tinted wipe-boards

None of these adaptations are that expensive – many could be implemented in every school in the UK tomorrow at no additional cost.

Changing the background of the interactive whiteboard is as simple as changing the colour of a Word document. If budget allowed, they could even have a stack of coloured paper for the children who chose to use it.

I would ask every teacher parent, school governor, MP and councillor reading this article to go into your local school tomorrow and ask them to do at least two of these three things.

It’s likely to improve academic performance – and it could just save the school life of many undiagnosed children sitting and suffering in silence.

Have you experienced any of these symptoms yourself? Are there any other ideas you would recommend? Talk about it on Scope’s online community.

Find out more about 100 days, 100 stories, and read the rest of the stories so far. 

How the Common Assessment Framework can help your child

Guest post from Rose-tinted World – a parent of a family affected by Irlen syndrome and dyspraxia. She blogs to raise awareness of these condition and to share information with others affected.

I am a professional working in a safeguarding field, but more importantly, I am the mother of a child with multiple health and development issues. I have wanted to write about early intervention and the CAF (Common Assessment Framework) process for some time as I feel it is an invaluable but underused resource that produces great benefits to children and families.

CAF is a process to help children who have problems across a range of issues or difficulties that cannot be helped by one agency alone. As a parent, I found the process invaluable. I also saw lots of benefits to the professionals involved in my son’s care. However, the place where I saw the most impact was in my son himself and in the progress he made at a key point in his early life.

My son had his first CAF when he was three. He had speech delay, sporadic hearing difficulty, breathing problems, lack of progress with toilet training and some behaviour issues. We were doing what we could as parents and had already made use of community resources and self-help materials. My son was also receiving intervention from the speech department, on-going assessment from the audiology department and support with his toilet training from the Sure Start Children’s Centre where his childcare was provided.

Preparing our son for nursery

Our key hope was to ensure our son was prepared as well as possible for the start of state nursery. We didn’t want him to start at the school nursery incontinent, incomprehensible and with difficulties paying attention. This aim was starting to be difficult because of the number of agencies and services involved in my son’s care.

The CAF process

The range of problems and level of intervention meant that good communication and co-ordinated support were essential. It is exactly this type of situation that CAF was designed for. The CAF process allows for assessment across a range of areas. This holistic approach tends to represent a family’s perspective of a child’s strengths and support needs better. My son’s speech development was linked to his difficulties with attention etc. so it was helpful to look at all of the problems together. Having done this, there were then clear areas of involvement from particular professionals and departments.

The CAF process also collects information of everyone involved in one central place. This is helpful to everyone connected to the child. The process also allows the family to identify outcomes. Again, this better matches a family’s perspective. The ‘problem’ may not be solved when a single, time-limited intervention is over. However, there are many places where the impact of the intervention may be supported or embedded. The CAF process looks beyond individual service intervention and identifies the many ways in which an outcome can be supported.

A co-ordinated and outcome focussed approach

My son was referred to a community paediatrician for a generalised development assessment. This led to a further referral to ENT (Ear, Nose and Throat department) and a diagnosis of severely enlarged tonsils, obstructive sleep apnoea and a dust mite allergy. Treatment for each of these conditions led to an improvement in breathing, speech and behaviour.

My son was also referred to a child psychologist within the CAPS Team (Child and Parent Support Team). She identified that there was a link between my son’s delay in toileting, his speech/ comprehension difficulties and his impulsive behaviour. This meant that we needed a separate programme to explain and encourage continence for him. This was not advice we would have found in any readily available book on toilet training or childhood development and it had a massive impact on my son’s continence.

And most importantly:

My son had these interventions BEFORE he started at full time school nursery. The process meant that he benefited from early intervention at a key time in his development that ensured that some preventable problems were, quite simply, prevented. It also meant that he started nursery with one multi-agency plan for intervention, including a summary of everyone involved and what they were committed to do as part of their regular remit of work. This was incredibly helpful for the school and guided his early school action plus input.

Challenges to getting a CAF

Getting a CAF is not always easy. There is a lot of misunderstanding about the role it can play. Many professionals think it is only for serious child protection cases – times when there is a risk of serious harm and where that harm will most likely come from the action (or inaction) of parents. Other professionals worry it is time consuming or might commit them to doing things that are outside of their job.

I understand these concerns; people are busy, there are so many commitments and targets that need to be met. However, I also know that no professional gets up in the morning with the intention of failing a child due to a lack of communication. CAFs are specifically there to help children (and professionals) where no agency alone could possibly solve a problem. It is great that everyone has their own specialist area, but some children have complex problems that need a co-ordinated approach for any one intervention to be successful.

It is also true that there are some times when there are risks posed when a CAF would be used (e.g. where there is domestic abuse that is not of a level where more intensive/statutory intervention is considered necessary). However, CAFs are most effective when they are used as a multi-agency approach to help children with complex needs or else as a tool to guide early intervention for a child who could not possibly meet their potential without this early support.

Perspective of a professional

When it comes to my son’s case, I am first and foremost, a parent. However, I work in a connected safeguarding field and have another perspective as well. Five things that I know from this perspective are:

  • Professionals are often as frustrated as parents by lost referrals, uncoordinated support and lack of communication. This makes their job harder and can be very demoralising. A CAF is designed to improve joint working which is to the benefit of everyone.
  • Professionals like other people to think well of their service. A CAF won’t get you anything for your child that you are not entitled to. However, it will get you the best of whatever is available that you are eligible for.
  • Professional embarrassment is a powerful force. If someone says they are going to do something they are unlikely to turn up to a meeting of their peers and admit they haven’t done the one reasonable thing they agreed to do at the last meeting.
  • Parents will ask for help for anywhere they think they can get it. This can lead to duplicated effort from different professionals. A CAF prevents this happening and means that everyone is clear on who is doing what.
  • People who are doing this kind of work like to see the impact of their intervention and adore success stories. A CAF is an excellent way for professionals to see the role their work plays in far larger successes such as making a wide-ranging and long term impact on the life of a child and a family. It’s really nice to share that success.

Ultimately, a CAF is just a set of forms and series of meetings. It is the process that this unlocks that is truly helpful to a child. The problems above are not the only difficulties my son has faced and the CAF described is not the only one he has had. I would recommend the CAF process to families with children facing multiple difficulties. I would also recommend involvement for any professionals involved in working with children and families.

I am grateful to the CAF process and all the professionals involved for helping us to work towards our priorities and to deliver their interventions in the best interests of my son. It helped relieve stress for my family, improved the quality of support my son received and will ultimately bring my son closer to achieving his potential as an individual. As a parent these are some of our key priorities and outcomes worth working towards.

Find out more about the Common Assessment Framework

Have you used the CAF process? What were your experiences? Leave a comment below

Encouraging children who struggle with reading

Guest post from Rose-tinted World – a parent of a family affected by Irlen syndrome and dyspraxia. She blogs to raise awareness of these condition and to share information with others affected.

World Book Day is an annual celebration of books and reading. This year World Book Day falls on 7 March. World Book Day offers a great opportunity for children – it allows everyone to find something to enjoy about literature. This seems quite obvious but it is a point worth making. Not every child is a natural reader and all develop as confident readers at their own pace. Some, like my daughter, have to contend with a learning difficulty that makes independent reading more difficult.

How wonderful to have day where everyone can talk about their favourite books and fictional characters. At my children’s school the children are allowed to dress up as their favourite character for the day. This makes all the children equal. Nobody has to read out loud, or show how slowly they read or even say how many books they have read themselves. They only have to share their love of their favourite book with their peers.

We have always read to our children. This proved particularly helpful when my daughter’s problems with reading started. We were able to read her far more complicated books than she could read to herself. This enabled her to listen to chapter books and to develop an understanding of more complex narratives and extended character development. This also allowed her to continue to build on her love of literature.

Come World Book Day two years ago she chose one of the characters from the books we had been reading to her. This was one of the fairies from the ‘Rainbow Fairies’ series of books by Daisy Meadows. She loves these books and has collected many of the series over a number of birthdays.

Son dressed as dinosaurLast year my daughter dressed as the witch from the ‘Worst Witch’ by Jill Murphy. My son dressed a dinosaur from ‘Dinosaurs and all That Rubbish’ by Michael Forman. We also attended the book fair that was put on at the school. My children love this event – All the children love this event and it is always a pleasure to see children so excited by books.

Last year both my children chose books and we went off to meet a friend for dinner. Our friend was running a little late and my daughter took out her book and asked if she could read it. At this point she had only managed to read picture books but I didn’t point this out as she happily held up the chapter book she had chosen. My friend arrived and we started nattering not really noticing how quiet my daughter was being. My daughter read all through our visit with our friend and then went off to her room when we got home. The next morning my daughter announced she had read the book and it was great. I was amazed that she had managed to do this and a bit confused about where this sudden breakthrough had come from. So I asked her how come she had read the whole book and she answered quite simply – because she had picked it up from a shelf that said ‘read it yourself’.

"Read alone" sign

I always remember this moment with warmth. We had had so many struggles in the years before this – fraught home work sessions and frustrated reading practices. We had also had uncertainty about where progress could come from. It made me laugh that my daughter had taken a sign so literally and that this has enabled her to take a massive leap in her own development.

We are always happy when World Book Day comes around. We have always had the belief that the joy of literature can communicate itself and that there are many ways to appreciate books (listening, dressing up, drama etc). We enjoy World Book Day because it gives us the perfect opportunity to remember all of these things.

Find information on World Book Day
Ideas on World Book Day costumes

The best toy we ever bought

Guest post from Rose-tinted World – a parent of a family affected by Irlen syndrome and dyspraxia. She blogs to raise awareness of these condition and to share information with others affected.

The best toy we ever bought is also the simplest. At first glance you might even struggle to see that it is a toy at all. The toy that has helped my children so much is an unassuming, plain and empty black tray.

The tray itself fits easily on top of my children’s small playroom table and can be easily stored behind a cupboard when not in use. However, this amazing toy has rarely been away in the five years we’ve had it.

Irlen syndrome and specific learning difficulties

Both my children experience symptoms of Irlen syndrome. This is clearest in my seven-year old daughter who experiences discomfort when reading and writing. She is a reluctant writer who will use the minimum of text to finish any task that she cannot avoid by other means.

What this toy has allowed my children to do is to develop their understanding of narrative form throughout their childhoods. This would be good for any child, but for a child with a specific learning difficulty this can be essential.

The empty black tray has been many things over the years; a seascape, a farm, a zoo, a pre-historic scene and even space-world. The tray can be made into anything the children imagine it to be: Sometimes scientific, sometimes fantastic and on occasion downright absurd. Most ‘worlds’ are created out of the children’s existing toys and require no expenditure or trips to the shops.

Creating worlds and storytelling

What the creation of worlds enables children to do is to build up stories using the building blocks of storytelling. First there is a setting (ocean with shells and sand, farm with trees and fields, pre-history with rocks and stones, space represented by shiny aluminium foil). Next the child can add features which denote this setting (boats, barns, fir trees, rocket) and then finally the child can add the ‘subjects’ of their story or inhabitants of their world (pirates or fish, famers and cows, dinosaurs, astronauts or aliens).

By building up this world the child is creating the story of this world and its inhabitants. This is a tangible version of the process children undertake when writing a narrative (‘On a dusty lunar surface a rocket stands surrounded by aliens. An astronaut peers out of the window…).

The child can also create their world starting from the ‘subject’ of their story by then building the environment around their main character (‘The farmer wakes up, walks to his tractor and drives over to milk the cows’).

Once the world is created then the scene is set for the story to develop any way the child’s imagination chooses it to. Moving the characters around to interact with their environment allows a child to build up more sophisticated plot and narrative. Long storylines can be developed which would simply be impossible if the child were reliant on their ability to write.

This can free a child up to experience the joy of storytelling and plot creation. My daughter used to cry if I asked her to write a sentence. She quickly became frustrated and uncomfortable when confronted with a blank page of white paper. This same child could create a world of fairies that would occupy her and her brother for two hours.

Developing narrative skills

What our empty black box has done is to enable both of my children to develop their narrative skills in a fun and meaningful way. Yes, it has taken them both longer to build up the writing skills to do this on paper. Fortunately, their language skills were already developed, simply waiting for their writing ability to catch up. This has prevented them from falling behind too far and has ensured they are growing up with a love of language in all its many and beautiful forms. This allows them to transcend their frustrations and discomfort they associate with pens and paper. It enables them to flourish and evolve into not only confident and happy storytellers but also into the potential natural historians, physicists and anthropologists of the future.

Our square tray measures 60cm x 60cm and it 7 cm deep. We bought ours five years ago from Hope Education.

This comes as a ‘Creation Station’ on sale for £6.59. This can be bought from Hope Education with along with a number of ‘mats’ with the base of different scenes designed on them.

Before we had our wonderful empty box, we cleared a shelf on a secure bookcase. This shelf was at the children’s height and they used to create ‘scenes’ on it.

Regular stars of ‘scenes’ and ‘worlds’ are dinosaurs; farm animals, zoo/safari animals, fairies, dolls house families, ocean animals/fish, aliens, insect and dragons. Props include cars, dolls house furniture, bath toys including boats, rocks, shells, miniature farm buildings, rockets and lunar craft. All of these come from my children’s own toy boxes.