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Guest post: "We waited 13 years for my daughter's dyslexia diagnosis"

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MumsnetGuestPosts · 07/10/2015 10:18

If anyone had told me when my daughter was at primary school that she was dyslexic, I would have told them it couldn't be true.

Lorrie loved school and achieved well in her SATs. Her school reports almost glowed.

Secondary school was a different matter. Practically from day one, Lorrie found it chaotic and confusing. Her learning stalled. When it came to parents' evenings, let's just say they were less enjoyable.

At 13 her educational possibilities suddenly seemed somewhat different to how they had appeared at 11. She had changed from 'the girl who achieved' to 'the girl who was stuck'.

Of course we wondered if we or the school was at fault, or if she was simply unhappy. We tried to intervene but in truth for two years we didn't know what to do.

Then, while throwing out papers at home, I came across a poster she had made during an Anti-Bullying Week when she was ten. Her slogan was 'tell an adult', but the spelling of 'adult' was all over the place.

I suddenly realised she could be dyslexic. It seemed so unlikely - I couldn't imagine convincing the school to go along with it, so I took her to be tested privately. A strong dyslexic profile was confirmed.

The school's special educational needs teacher helped me make some sense of it. She explained that Lorrie's primary had been quite regimented, with an easily remembered timetable and structure. Secondary school had more corridors, classes, subjects, teachers and of course a higher standard of work. Lorrie had stopped being able to find creative ways to compensate for what she was struggling with.

It was a time of shock and confusion and long explanations to puzzled grandparents.

Lorrie had always wanted to be an interior designer. I wanted to show her that she could still follow her dreams and started writing my book Creative, Successful, Dyslexic.

I interviewed successful people with dyslexia, including photographer David Bailey, actor Zoë Wanamaker – and designers Kelly Hoppen and Sophie Conran. Their stories revealed to me that, even though they had struggled at school, they found that dyslexia had actually helped them in the world of work. They believed it gave them a special creative edge, as well as a determination to succeed in a way that they had not managed at school.

Had Lorrie not had the drive to be a designer, I think the dyslexia diagnosis would have sat heavy on her shoulders. Instead she started working on people's houses, proving to herself and others she had a talent for it.

She worked very hard for her GCSEs and is now doing A levels in Art, Textiles and Sociology. We sit down together on the sofa when there is revision and painstakingly find ways to remember facts to help carry her through. It is tough.

One-on-one help is what children with dyslexia need – but schools can rarely afford it. The baton is passed to parents, but many may feel they do not have the time, knowledge, resources or confidence to provide the support their child requires. Unless schools receive funding to do this intricate work, children will continue to miss out, which can have a huge effect on their future education.

The attributes that come with dyslexia may not be the ones which help a child achieve a batch of A*s – but, as I've come to realise in my research, they are attributes.

Many people I spoke to found ways to teach themselves as they were growing up. As designer Kelly Hoppen says, "My parents would go out, come back and I would have moved a wardrobe. If we stayed in a hotel I would shift everything around in the room. I always knew what 'worked'. It probably drove them mad!"

Dyslexia Action's director of education and policy, Dr John Rack, is clear it is not enough to tell children to believe in themselves and work harder. “They need help and support. They need strategies and tricks to help them get better at what they find hard. They need people who can help them to have confidence when they doubt themselves.”

In fact nearly everyone interviewed for the book said that when they were growing up there was an adult – often a teacher or parent – who had confidence in them and helped them retain their self-belief.

And if one adult is all it takes to boost a child with dyslexia, we can all be that person – and that's why I'm campaigning as part of Dyslexia Awareness Week. It costs us nothing and it can change lives.

Dyslexia Action is a national charity providing support to people with literacy and numeracy difficulties, dyslexia and other specific learning difficulties. Part of the proceeds of Creative, Successful, Dyslexic, by Margaret Rooke, will be donated to Dyslexia Action.

OP posts:
DonnaRocksMyWorld · 07/10/2015 12:32

It's good that you were able to see the possibility of dyslexia in your daughter. It must have been a big help for her to have your support in that way.

I've noticed that girls often fly under the radar with dyslexia or ADHD.

No one noticed my dyslexia (and dyspraxia) until I was at university. I was 'ok' academically during secondary school but all my usual coping mechanisms collapsed at Uni for the same reasons as your daughter's in secondary school. My parents as lovely as they are did not believe in dyslexia and struggled to support and understand. My mother still hates that I have a 'label' and still discourages me from disclosing it.

My Uni was brilliant, paid for 121 support and my diagnosis with an educational psychologist.

ALittleFaith · 07/10/2015 17:29

I was 21 (in my 3rd year of uni) when I was diagnosed. I self-referred to student services at uni to get a diagnosis. No-one through my entire education has picked up on it, possibly because my difficulties weren't so much spelling as planning and memory issues.

I do wonder how different my life would have been if it had picked up as a child. I also suspect I may have other issues - probably dyspraxia, maybe ASD or ADD! However I was at primary school in the 80s when awareness was pretty poor.

I think it's great you've written a book, I hope it raises awareness now so parents can be vigilant and help to get support for children if they need it.

PeppaPigStinks · 07/10/2015 20:15

Also an 80s child here! I was diagnosed at 30 years old when I had issues in work - despite gaining a first class honours degree and masters.

junebirthdaygirl · 07/10/2015 21:39

I had same situation with ds. Fell apart at secondary losing stuff not knowing which class was where, mixing up days for handing up assignments. He was all over the place after doing very well in Primary with no questions asked. I'm a teacher and l noticed nothing. School were hard on him so l had him assessed to show them how good he was. He was diagnosed with dyspraxia. It is often at that transition stage that problems really present themselves. I had like you to spend much time supporting him and he is now at university and doing well.

Margs55 · 07/10/2015 22:55

So interesting to hear all of your experiences, thanks so much. If you have time, take a look at my book Creative, Successful, Dyslexic which I hope you will find positive and inspiring.

icklekid · 08/10/2015 06:24

As is clearly a common thread here I was also not diagnosed with dyslexia until I was 15, I found it incredibly hard to cope with the label but the support from my secondary school was fantastic. It was an English teacher who noticed I struggled with the same things no matter how often I redrafted or how hard I tried! I got extra time and to type my exams and I'd already developed a range of coping strategies. As a teacher and now slt I have tried to install in children (and parents!) The awareness that you can't use it as an excuse not to fulfil your ambitions! Great post op!

MigGril · 08/10/2015 07:10

I think I was one of the lucky ones, my dyslexia was picked up in primary although in my last year at age 10. Mainly as my teacher had experiences working with children like me previously otherwise I think it would have been missed until I went to high school. My high school where great and so where my parents and thanks to them I probably achieve academically way more then I would have. Without that intervention and went on to University to study physics.
Oddly enough though it's working I've found harder. icklekid I'm interested to hear your a teacher as after a career break I'm considering doing my teacher training, but I am cenerened I wouldnt be able to cope with the workload.

DonnaRocksMyWorld · 08/10/2015 09:20

MigGril I agree with your point about work. I'm great at my actual job (not a teacher) but massively struggle with paperwork, filling, planning things in the appropriate manner. I wish it was easier to disclose (being dyslexic) without prejudice and to get help. I'm not sure what kind of help work could provide but some support or awareness would be nice I suppose.

How do all of you cope with work? So you have lots of routines? Any books to recommend?

PeppaPigStinks · 08/10/2015 10:45

Donna- I don't cope so well in work which is when it became a 'problem'. My previous coping mechanisms (and huge amount of parental support through school and uni) could no longer be used as effectively!

RoseDog · 08/10/2015 11:35

Your post and your daughters success is very inspiring and gives me hope my own daughter will have a bright future ahead of her, we sadly can't afford private testing and are also Scottish where we seem to be quite behind with Dyslexia awareness, even dyslexia awareness week is a month later than England!

DonnaRocksMyWorld · 08/10/2015 14:52

Peppa- I agreed coping at work is tough and for me at least it's getting tougher as my career progresses.

I wonder what the solution is. Lots of people are dyslexic what happens when then join the workplace?

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