Dyslexia (pic) & lack of school support

[Llamacorn]

I am really concerned with dds learning, and feel that not enough is being done to help her.

She will be 9 in Feb and is in primary 4 (Scotland). We deferred her school entry for a year as she has some health issues (still in nappies) and we didn't feel she was ready, which was the right decision.

In particular, she really struggles with her writing (I have attached pic) but she definitely struggles in many other areas too. I was always fobbed off to begin with, being told she would catch up, she was young etc, but I knew she was really struggling. We had a review at school last year in regards to dyslexia, and we were told they don't formally diagnose anymore - if we wanted that we would have to pay privately. However they are supposed to be helping her as if she has it (if that makes any sense).
I was at an open evening this week, and I noticed she doesn't have half of the equipment we were told she is using. She does have a writing slope and alphabet letters on her desk but that was it, she doesn't have any pencil grips, finger spacers etc. She didn't even have her toilet pass and I found out that her helper is no longer taking her for toilet checks either - that's possibly another post though.

I brought it up with a teacher as her normal teacher has been off for a while. All I keep getting told is they'll get her this or that, she'll be introduced to a 'clicker' system but like I say, they have began to help since last year but nothing seems to be going any further forward and it feels like empty promises at this stage. Yet again I am promised a "call back".

Dd is being assessed for autism, through OT & paeds - however this is a very slow process taking years too. She is also very different at school to anywhere else so it's very hard for them to see the whole picture, I have taken to videoing a lot of behaviours and hopefully we may be getting somewhere on this front.

I have noticed her writing and reading are getting significantly worse since her work back in March/April - I used to be able to pick up on what she was writing about but I'm at a loss now only really recognising a few words. Dd has a lot of anxiety around this, cries every night and morning not wanting to go to school.

I'm sorry this is long, but I was just wondering if anyone has been through similar and could offer any advice? I really don't feel the school are listening to my concerns, and have yet to follow through on many of the aids and support i was told she would have.
My biggest fear is for when she gets to high school, if we don't have a support strategy in place in order to help her I really don't know how she will be able to cope.

Thanks for reading if you managed this far!

I think many education authorities no longer do dyslexia testing due to budget cuts. I paid to have a private test done - would this be a possibility for you? The NHS website gives a link to the Directory of chartered psychologists, which is what I used to find someone near me.

It's still a struggle getting the backup you need (and it sounds like your DD has much more complex needs than my DS) but having a diagnosis helps. You have to become that parent though, I'm afraid.

Thank you so much for your reply, I know what you mean about becoming that parent - it's just so hard to do so.

Thanks for the link to the psychologists, I will look into paying privately. Do you have a rough idea on how much this would cost?

Is my dds writing like your sons? Do you think hers looks like dyslexia?

One of the things I've discovered is that dyslexia is something of a blanket term covering a whole range of things. So, for instance, my son's writing is (and always has been) very neat - a source of contention with his current teacher who keeps saying unhelpful things like "and look at his beautifully neat hand writing, he clearly doesn't have any problem". No amount of pointing out that this beautifully neat hand writing takes 5 times as long as his peers and therefore he writes one paragraph of his story in the lesson while the rest of the class finish theirs and this is causing him immense frustration seems to get through to her!

My son's main problem is an area called "working memory" - i.e. the short term recall that enables you to remember the first sentence of a paragraph of text by the time you get to the end of the paragraph, so you can tie it all together and get a sense of the meaning of the whole block. It causes him problems on a shorter recall level as well. Phonic decoding is hard, because with a polysyllabic word, he's forgotten the first syllable by the time he's managed to decode the last one (I think his reading is getting better as he develops a kind of mental dictionary of sight-words - exactly the way phonics enthusiasts say reading is not supposed to work!) Maths methods like "leapfrog" for doing column subtraction are also a struggle for him, because juggling 4 separate numbers at once as he tries to remember how to borrow a thousand and split it up between the hundreds, tens and units column in order to make the sum possible are actually harder for him than the old fashioned algorithm of "borrow one from the bottom and add it to the top" which he can do a column at a time (and he understands how the algorithm works, because I went to great pains to explain it to him, so it's not like I'm just expecting him to do a mechanical performing seal trick).

Private psych assessments cost between £500 and £600 at the moment, so they don't come cheap. For me it was worth it to be able to say "look, you haven't got a 75% of the way down the class not very bright and a bit lazy child on your hands, you've got a bright child with dyslexia - the brightness allows him to compensate for the dyslexia, and the dyslexia masks the brightness, but really what you're seeing on a superficial level isn't what's there." Sadly, I don't think his current teacher is listening.

That sounds so frustrating for you, I can sympathise as I feel the same a lot of the time with my dds teachers.

Did you find out about your ds' working memory through the private diagnosis? Its terms like this I don't fully understand to be honest, but a lot of what you have written too my dd also struggles with. It's awful watching our dc getting so frustrated isn't it.

I think we will definitely look into going privately, it won't be easy but I do feel a definitive diagnosis will help the school to understand dds needs better.

I feel horrible writing things like this tbh, dd is so bright and amazing in lots of other ways. It's like she can't ever get what's in her head down on paper. She came home in tears today, a substitute teacher had given the class a surprise math test and marked dd's as 0%. When I looked at it though, dd had gotten quite a few correct but as her numbers were jumbled and backwards the teacher didn't notice.

Thanks for your advice, I really appreciate it.

(I think his reading is getting better as he develops a kind of mental dictionary of sight-words - exactly the way phonics enthusiasts say reading is not supposed to work!)

Sorry, PricklyBall, have to pick you up on this point as you are spreading disinformation.

'Phonics people' say that children should not be taught to memorise words as 'wholes' without any regard to the internal construction of the word, i.e. that it is formed by sequentially representing each of its component 'sounds' by a letter or letters. That unfamiliar words are 'read' by decoding the letters they contain into the sounds they represent, then blending the sounds to produce the word. That (and this is key) after repeating this decoding and blending, either once or multiple times, depending on the child, the word is fixed as an 'orthographic memory' and can be read 'on sight'. This is the desired objective of phonics teaching and is completely different from the memorisation of whole, unanalysed, words.

Phonic decoding is hard, because with a polysyllabic word, he's forgotten the first syllable by the time he's managed to decode the last one

In which case he would be better decoding the word 'progressively. Decode and 'secure' the first syllable, decode and secure the next syllable and add it to the first, 'secure' those two blended then go on to the next syllable, and so on, all through the word. If a child finds it difficult to recall all the sounds or syllables when they have decoded all through the word this is a good alternative way to work. They are still using their phonic knowledge, just using a slightly different blending strategy.

I would ask the OP if she knows what the phonics teaching was/is like at her DD's school. I realise that she has more problems than just with reading and writing but good phonics teaching does help.

I feel rather confused and uneducated about all of this if I'm honest!
Dd learned at school with jolly phonics.
She will easily memorise a book and has fooled a few people doing it this way. If she has a new book and we cover the pictures then she really struggles quite a bit. She is actually better at reading bigger words though for some reason, it seems like it's the smaller, simpler words that's she finds most difficult.

Hi Llama,
I've got DS's report here. It uses something called the Wechsler Intelligence Scale for Children (wikipedia link). It tests four clusters - verbal comprehension, perceptual reasoning, working memory and processing speed. My DS came out high on the first two, low-ish on the last, and down on the 15th centile for the last one (i.e. out of a hundred children he'd be 15 from the bottom). With a non-dyslexic child, you'd combine these to give their IQ, but in DS's case, the scatter is so great that an overall IQ isn't a meaningful measure.

Re. synthetic phonics, not all teachers agree that it's the only way of learning to read, or suits every child. It undoubtedly works for most. Whole word recognition fails more children than phonics does. But a lot of teachers say that in their experience, there's more than one way of getting to fluent reading in adults, and not all children learn exactly the same way. (By the way, Maizie, just because someone disagrees with your position doesn't mean they haven't read around it, or don't understand the issues. )

Again, looking at my son's report, he's got high average ability to understand text, average ability to read and decode single words, but spelling, phonemic decoding and reading speed in the low average range. Again, as with the components of the Wechsler test, a scatter of results. Somehow he seems to be able to read and understand better than his ability to do phonemic decoding alone would suggest.

(I'm always struck by a couple of things. One is an observation neurologist Lise Elliott made, which is that written language is too recent to have been selected for by evolution so it has to be piggy-backing on other neurological structures, probably pattern recognition and the general language areas. The other is that some written languages aren't phonetic at all - e.g. Chinese, and over a billion people manage okay with that. So the idea that phonics is the only way of approaching reading strikes me as implausible.)

Learning to read languages like Chinese isn't really comparable to learning to read English and other phonetic languages. My dh is learning Japanese. He has spent two years intensively learning characters using flashcards and now knows about 2000, enough for a very basic level of literacy. There are thousands more, and many have multiple associated meanings so there isn't the same correspondence between the written symbols and the verbal sound. It's very different.

(At the risk of heading off on an interesting digression, I was talking to a friend about this recently. She lived in Japan from late childhood through to university age and speaks the language fluently - but is still working on the reading. She tries to learn 10 new words a day.)

As with all these things, it's a balancing act. When DS gets home from school he is exhausted - because his dyslexia means he has to concentrate really hard all day and he's wiped out in a way I wouldn't have been by a similar day at school at his age. So, the strategy Maizie suggests, of decoding a phoneme, decoding the next one, gluing them together as a unit, going back to the third one, adding it on to the previous two - although it's a great strategy - is amazingly hard work and a recipe for stripping the fun out of reading. A graphic novel, on the other hand, even if it runs the risk that he's guessing from context and illustrations, will keep him interested and enjoying reading. Getting him to read fluently and keeping reading fun have to go hand-in-hand. If I've drilled him in exercises to improve his working memory but at the same time just left him with the idea that reading is a miserable chore to be got out of as soon as possible, that's a failure as much as whole-word-to-the-exclusion-of-all-else would have been.

Llamacorn can you find your local Dyslexia support group? Depending on which part of Scotland you are in, you could try
Dyslexia ScotWest
They have information on their website for parents.They also hold local meetings with guest speakers and they have links to education professionals who specialise in dyslexia.

Another option is Dyslexia Scotland

Contrary to maizie 's post, good phonics training doesn't always help with dyslexia.

By the way, Maizie, just because someone disagrees with your position doesn't mean they haven't read around it, or don't understand the issues.

I posted because you were saying something about 'phonics enthusiasts' which was not true and was misleading. If you count that as 'disagreeing' with you I can't help that.

So, the strategy Maizie suggests, of decoding a phoneme, decoding the next one, gluing them together as a unit, going back to the third one, adding it on to the previous two - although it's a great strategy - is amazingly hard work and a recipe for stripping the fun out of reading. A graphic novel, on the other hand, even if it runs the risk that he's guessing from context and illustrations, will keep him interested and enjoying reading. Getting him to read fluently and keeping reading fun have to go hand-in-hand.

I have worked with children at secondary school who struggle with reading. Guessing from context and illustrations may have kept them afloat at primary but it doesn't work when the illustrations run out and the books aren't deliberately written to facilitate guessing from context. And nothing would persuade them that reading is 'fun'. when you can't do something competently it isn't fun at all. it's demoralising.

Contrary to maizie 's post, good phonics training doesn't always help with dyslexia.

Well, that's really weird because 'phonics' has always been the recommended method for helping 'dyslexics'; it was the method recommended by Dr Orton, who worked on dyslexia in the 1920s and who, with Anna Gillingham, developed the first programme for 'dyslexics' in the 1930s.

maizie it's clear you are not dyslexic and don't have a close family member with dyslexia. You also don't understand the different issues that people living with dyslexia can face or you wouldn't focus on one aspect of research aimed at helping people with one certain manifestation of dyslexia.

I'm not sure why you think a thread where someone is looking for support, is the place for you to push your view when you have no idea of the challenges the OP's DC faces.

Phonics is not always the recommended way to help people with dyslexia. There is no one-size-fits-all approach because people with dyslexia face different challenges.

If you return to working with children who struggle with reading, perhaps you should read some more recent research (there were at least two studies in 2012 on how phonics fails people with dyslexia) or you could approach the organisations currently leading the research in this field. If phonics was the solution there would be no need for scribes, coloured lenses or any of the other myriad techniques used by people working in this field.

I came on this thread to correct some misinformation about 'phonics enthusiasts' which PricklyBall posted.

I also suggested a strategy for decoding and blending polysyllabic words which could help a dyslexic child who is struggling with reading. I even said that I appreciated that this might be a small aspect of their difficulties.

I don't appreciate being attacked for something which I have not done.

However, I'll leave you to your woo woo, sister. Because, believe me, there's an incredible amount of woo surrounding 'dyslexia' and so many people fall for it.

Perhaps you could link to these studies Woowoo?

Readers of this thread might like to know that, according to this meta-analysis of studies from 2014, phonics is the only method that has been shown to be helpful to dyslexic children in learning to read:

journals.plos.org/plosone/article?id=10.1371/journal.pone.0089900

Norest you can find them on Google if you search for phonics failing dyslexics. iirc there was a paper presented in Glasgow in 2012 and there was also work on the Davis Program. There have been studies at Scottish Universities regarding it too.
maizie it's disappointing that rather than admitting your research is out-of-date you are resorting to personal insults. I've worked with dyslexia organisations for over a decade. Research has moved on considerably since the 1920s and 1930s. There's nothing 'woo' about ensuring your using best practice in your field.
Numerous dyslexic children have been let down by teachers who persisted in pushing phonics rather than addressing the child's needs and working with the organisations who are at the forefront of both research and support.

All of which means very little in the average school where unless your educational needs are so pronounced that you're visibly failing, or a child with such severe behavioural difficulties it disrupts the other children, you get sod all in the way of support. If your child is falling in that 50th to 80th centile bracket in the class, they don't care. He's a bit slow, but that's alright, it won't stuff up the league table too badly.

So as parents we're between a rock and a hard place. Do we take them, when they're exhausted after a long day at school, and drill them in phonics for an hour, simultaneously destroying any enjoyment they might get from books and turning them off education completely? Or do we let them read comics, read aloud to them, let them muddle along as best we can?

It is fucking heartbreaking to know you have a bright child who could do stuff, but who is going to sink without trace. My cousin is in his late 50s and came out of secondary functionally illiterate because of his dyslexia. DS's reading is already much better than that - he's okay. But it's slow, so he won't be able to get through school work fast enough to get a decent set of GCSEs. He's 9 and already in tears at the thought of SATS.

I go to bed in tears at the thought of my lovely DS being failed by the system.

But no, you want to turn this from a support thread into a point-scoring exercise about phonics. Well, have fun. I could have done with a chance to talk to other parents with dyslexic children about what works for them in negotiating with school about how to get their children's needs taken seriously. But you've hijacked the thread.

Congratulations.

I'm going to hide this thread now.

Cross post with woo - that wasn't directed at you, obviously.

If you can afford it, a private assessment from an EP is well worth the money. We paid about £600 I think. The EP then recommended further assessments which we arranged through the GP, though we saw an OT privately too as we felt it was urgent. A professional diagnosis and recommendations give you much more leverage and power as a mum because your requests are based on expert opinion, you are no longer just a bothersome parent fussing about nothing. Even so, I find I have to be very pro-active with the school in making sure the right interventions are in place and stay in place. In the past I have always been very diplomatic, but I am pretty blunt now as my DCs don't have time to waste doing things that don't work. Good luck in advocating for your child! x

Just looking back through the thread. Llamcorn, my DCs exactly the same in that they find longer words easier than short ones. The EP recommended we do duet reading which is where you read out loud in unison with your child. Really worked for both of mine. There is a great book on this and similar methods called Dyslexia Toolkit for Tutors and Parents by Yvonna Graham. For handwriting issues, we've found Handwriting without Tears which was recommended by OT to be a great programme. We are also giving Keyboarding without tears a go. It's pretty good and not too expensive. Also mine have started an online spelling programme at school called Nessy, which is working well. Don't waste time on things that don't work. I go in for regular meetings at the school and am quite bullish about finding how much progress they are making and knocking things on the head that are ineffective. There is not a one size fits all for dyslexia, so the more expert help you can get, the more you will understand what your kid needs.

Given she hasn't been diagnosed with dyslexia, are you sure that it is.

We're her health problems responsible for her not being toilet trained when she started school or could that be part of a wider delay in physical development skills?

"Norest you can find them on Google" rest assured if I could find anything reliable to support your claims, using Google, I wouldn't be asking Woowoo.

My ds absolutely hated reading, in fact me pushing anything to do with words (writing, spelling too) led to a great deal of anger and distress. The SENCO at school was convinced he was autistic, although his very experienced teacher thought he would probably grow out of his behavioural issues (she was right).

Lots of dyslexia in my family (all but one of the boys in his generation diagnosed plus several of my aunts and uncles with issues) so we got an EP assessment, showing mainly working memory issues. Then we were pointed in the direction of a synthetics phonics tutor by a "phonics enthusiast" from mumsnet and it was transformative.

ds was in the last year taught using mixed methods and so had to be taught to read pretty much from scratch. Watching him figure out that there was a 'code' he could understand and learn was amazing. We had about six sessions over one summer and he went back to school a reader. He reads more slowly than his sister but lots and for pleasure as well as when he has to. His writing is still terrible so he uses a laptop for all school/university work, but that's not really been an issue. He left school in the top five in his year and is now at a very good university. Neither of which I would have even imagined when he was seven and calling himself stupid. I am therefore incredibly appreciative of those who have shared their expertise here.

This website is very useful:

www.dyslexics.org.uk