A conversation about dyslexia

When did you realise that your child had a learning need?

It was a really slow, gradual process. Initially I did have worries, when you are sitting down with picture books it’s not obvious. Ella was so small around age 2/3, and she loved being read to but as she got older and started to learn to read it was a chore to sit down and read school books. She would procrastinate, but you always think that it could be a lot of reasons. 

I noticed other children being able to read signs and pamphlets, but Ella was not able to pick it up. She was adapting and passing off that she understood, she’d read part of a word, look at the pictures and guess what it was all about.  

By school age her reduced fluency of reading, was a tell-tale sign. She would miss a word or start part of a word and guess the rest of the it. I worried from year 1 and 2 onwards, because teaching her to read seemed harder than I imagined, but then she was my first child.

Because her working memory is not very big, she was learning spellings for a test but not beyond that. If she had done the test in the morning and then written a story in the afternoon she could easily spell all the words incorrectly or not even think about using them. 

The other thing is that her vocabulary has been very good and she is reasonably articulate but I think that’s because of the language we use at home. 

And yes, I always worried about dyslexia, rather than any other learning need. In hindsight you realise, that other family members probably have dyslexia or dyspraxia, which is a clumsiness that goes together with dyslexia quite often. Ella is quite clumsy too, so it’s likely that she has elements of dyspraxia but we haven’t formally had a test for it.

Did you get support from your school in identifying your child’s needs?

Not really. Her school is an outstanding state school, but in year 4 the teacher said she needed to work on fluency and that Ella needed to work harder to remember the lines of a play. Ella is otherwise very able; it didn’t occur to the teacher to work out the discrepancy.  

It was around the same time that I was talking to some friends and they suggested that perhaps Ella had dyslexia. This confirmed what I had been thinking. I spoke to the school and they didn’t think she was bad enough to have SEN provision.

The most useful thing that I did get through the school was after an informal conversation with the Deputy Head; where she gave us the details of a slighter cheaper specialist to get a diagnosis. That was all. 

Has having a diagnosis helped your child’s learning?

Yes, it helps as a parent, to come to terms with the way your child is. It has given me permission to give Ella the time and space that she needs. It’s prompted us to go after the different resources and go to see specialists.  

And a diagnosis does help at school. For example, the school were giving the class an A4 sheet with instructions at the start of the lesson, to read in preparation for the lesson. Ella couldn’t understand it. It was ridiculous to expect her to follow the written instructions. I made a fuss and asked the teacher to give me the paper in advance so that we could read it together at home. It made such a difference to how she could manage the lesson. Now they’ve started taking her and some others out before the lesson and going through the sheet together.  

Having a diagnosis, you realise that there are other things such as phonetic processing, not just reading and writing. Realising that working memory is limited, so for example doing maths and being able to do multi-step problems. I’m encouraging her to write down the calculations. Although other things such as repetition in learning has helped too. 

Can you share some of the challenges you and your child have experienced?

Frustration. It’s not being able to help, it is difficult to know how to help especially if you have a different framework to work through things than they do.

Frustration, thinking why isn’t this working?

And her frustration at not figuring it out, having to spend more time at the task and wanting to go off and play.

The frustrations are built from your expectations, society’s and school and where you need the kids to be in exams. I am worried about her being behind, but it’s better to think about the progress she has made rather than making comparisons with other children.  

Multitasking is hard. Things like her creative writing is great but the spelling and checking is hard for her. Advice from one of the tutors has been to not pick up all the mistakes, but focus on one thing to improve, such as putting in full-stops. 

Nothing around dyslexia is free, apps, worksheets, for starters there is free stuff but to progress your child you have to sign up and pay. Free resources are really needed.

A tutor is money, educational psychologist diagnosis is also money. These are trained people but it all adds to the costs. To see a behavioural optometrist for glasses is another cost. At the end it’s not always so obvious what works.

Children aren’t able to give you feedback always. To go through the process to work out if it anything helps is quite hard, there’s lots of back and forth, do the glasses help? No, actually maybe they do, but they don’t always remember to put them on. 

What would you say are some of the positives you and your child have experienced?

I think having a learning need brings you closer together. We spend a lot of time together, sometimes fighting but in the end, we are a team.

It has given us a better emotional understanding, a connection.

Some kids with dyslexia find it hard to organise themselves but Ella is great at strategic planning. She is better organised than me! 

She is really very creative and I’ve realised actually very good humoured about putting in another 5 minutes of work when she has already put the time in.

What are the top 3 things that you have learnt that you can share with parents going through the same experience as you?

Give your self-time and space and try and go through everything slowly, welcome and accept the differences. 

Recognise the positives in your child and praise them for what they are good at. 

Practically we have found a ruler or bookmark to underline the words and glasses to make words bigger helps. Clapping out syllables helps with spelling. Learning to touch type is supposed to really help.

Thank you to Suki for sharing her story with Level Up Kids. Both her and Ella’s names have been changed to protect their privacy. Ella is now 11 years old and just started a new school. She is a happy, confident girl with an enormous heart, who has not let her learning difference define her or interfere in her relentless, pursuit of fun!

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