To worry about DD 9 not being able to read....it's a long one!

[Helena2000]

They know. I tell them all the time. I have so many meetings about her with the school. They are lovely as individuals, and they all love DD, but they tell me they've got no resources and they are under staffed because they've had their budgets cut by the government, so they can'tgive her what she needs.
I tried to get her referred for assessment but the local authority said she doesn't meet the criteria because the criteria has been tightened because referrals have increased whilst their education budget has been cut.
School did a dyslexia screen last year and the results said she doesn't have dyslexia.
School tell me to teach her at home, but DD wants to switch off when she gets home and gets frustrated when I try to do reading with her, so then it becomes counter productive.
I just go round and round in circles.

The daughter of a colleague of mine was dyslexic and very reluctant to go through exercises after school with her mother, so the mum paid a local student to come in and go through the exercises with her, the daughter was much more open to this - she was hanging out with an 18 year old than her stressed mother.

Could you do something similar?

I used to write those most common words on seperate cards and stick them on my kids bedroom wardrobe doors and as a game before bed I would say a word and ask them to point to it - and then praise them when they did. Or write words and stick on those ball pit balls and get her to pull one out and read it or match it with an identical one for a reward.

You've been given some going advice OP (I remember Toe by Toe being used for late readers), but am really shocked that a school can brush off a child not being able to read at 9?

What does someone do if they can't afford private assessments or don't have the skills/understanding to investigate??

I used to write those most common words on seperate cards and stick them on my kids bedroom wardrobe doors and as a game before bed I would say a word and ask them to point to it - and then praise them when they did. Or write words and stick on those ball pit balls and get her to pull one out and read it or match it with an identical one for a reward.

That kind of game is great for helping children feel familiar with words, but with my DD I realised she was learning what that particular word looked like but didn’t have any strategy for decoding other words, she knew those words on sight - effectively memorising what they looked like but wasn’t reading them.

Because she could “read” the list of common words her school thought she was being difficult when it came to reading text in class, but she couldn’t read, she had an amazing memory but no reading skills.

https://amp.theguardian.com/education/2022/jan/19/focus-on-phonics-to-teach-reading-is-failing-children-says-landmark-study

Also, many ND children learn to play the piano by sound- you hear something, you press some keys, thus you learn the sound the keys make and learn to press them in the order that replicates the music you heard. Or ND children can be taught piano by numbers, or by recognising the patterns in chords etc. There are other ways to learn than by sitting at a piano with a teacher explaining sheet music… I’m fact we have a young autistic man locally who teaches piano and is very talented, and he can’t read music!

Can she not read at all.or is she just not interested?
My son has just left school he could barely read untill.he waa about 8 or 9 it did eventually click now he's isn't academic and never has been and reading isn't a plesure for him but he can read and write adequately.

Hi

I was in a similar situation with my DD but at 8 years old school put the delays down to covid disruptions but did put several interventions in place to try and help.

I asked multiple times about assessments but was always told give them time.

In the end I ignored this advice and has a private dyslexia assessment carried out which confirmed she is dyslexic I was them able to give the school the report as evidence. This led to them having to step up and bring in further resources - I.e coloured paper.

Also having a formal diagnosis completely changed my daughters confidence knowing there was a reason behind her issues reading and she wasn't just stupid turned her into a different child.

We are also able to have a private tutor once a week which has made a big improvement.

having a formal diagnosis completely changed my daughters confidence knowing there was a reason behind her issues

In my experience this is incredibly important for DC with ND diagnoses, maybe one of the most important things: they can finally understand themselves better and not lose confidence/have damaged self esteem for 'failing'. Incredibly important to get investigations completed before they reach secondary age too if possible. It can be very hard for teens to engage with and process new ideas about themselves and differences in a positive way.

My DD is dyslexic.
I too had issues with the school who screened here and said possibly she is but no funding to test and anyway she isn't "failing" in school.
A private test showed she was "moderately" dyslexic ( scale mild moderate severe) once school had the report they started to put things in place. this helped but it took ages to rebuild her self esteem.
In secondary we found a dyslexia tutor who helped her cement the missing phonics teaching and her reading and work came on leaps and bounds, but the real change came when we paid for a second test in year 12 as the school were telling me she no longer met the criteria for extra time, which confirmed the first diagnosis and gave her the extra time, but also suggested she may have visual stress.
I had never heard of visual stress but after a lot of research I found someone who tested her. She found coloured overlays helped but that coloured lenses really made a difference. It turns out that she had a very very narrow field of vision and so as your mind usually looks ahead as you are reading she couldn't do this and the processing effort was huge. Also the words moved on the page and the whole world was fuzzy like static on a badly tuned tv.
I can't begin to tell you how much difference that made to her, including being much less tired. i would suggest reading the files in this facebook page for more information(2) Visual Stress Help and Support UK | Facebook

Yep. Reading isn't just going through homework books after school......its her reading items off your shopping list as you go round the supermarket together. It's playing hangman on the back of a napkin while you're waiting for coffee in a cafe, its reading the menu online for the takeaway you're ordering, its reading the description of programmes you want to watch on Netflix, its writing a list of what you're going to do at the weekend. So many things you can do to encourage her reading.

I think I must be running on high emotion at the moment as my eyes pricked with tears reading this!
It nails everything I think.
She NEEDS a diagnosis so she can UNDERSTAND why she can't learn like the rest of her class. She would be able to think "OK now I know the reason why this is so hard for me when all my friends find it easy. I'm not stupid after all".
To me, getting a diagnosis has surely got to make an absolutely tremendous difference! But I've been told by several different teachers, the SENCO and the Head that a diagnosis makes no difference whatsoever to their teaching, therefore they are not engaging in pursuing a referral.
I go round and round in circles with them. I have spelt out, rather forcefully I might add, in meetings this year and last year that not knowing why she can't read (or understand maths, but I haven't highlighted that in this thread because it felt like too much information, and I know maths is important, but my 1st priority is reading) is now affecting her self esteem and self worth and this year I'm saying she needs a diagnosis in regard to thinking ahead to secondary school applications. Nothing, absolutely nothing gets me anywhere with them.
I really want to reply to lots of the posts I've read but I can't do it one by one, so I'm just going to bullet point replies to a few:

1. I have asked for the dyslexia screen to be repeated, and this was declined by the SENCO on the grounds that it can't be repeated within 12 months, and we are currently within that time frame.
   I'd just like to make the point that I was requesting this in school years 1 to 3, but it was explained she was too young to be screened. It took till year 4 for her age to be eligible for screening. She's a summer baby so my understanding is it was done on her age, not her school year (i.e. she had to wait until a certain point in Yr 4 before they could screen her). And they've told me they won't plan to re-screen anyway, despite my request, because "It won't make any difference to the way we teach her".
2. Someone asked me to be more specific. I'm not saying she literally cannot read, I'm saying she is reading at early year 1 level. And when she reads at home with me at year 1 level books, she stumbles and trips over every word in the sentence. She has to breakdown and sound out the simplest of words and mostly still gets the word wrong. She adds in letters that aren't even in the word. She'll sound out the start of a word ok, then get it wrong as the word goes on, and then as soon as she realises she has said the word wrong because the sound of what she has just said doesn't match in her vocabulary bank so she instantly realises she's read it wrong, she gets really upset and tearful at this point. I mean fully crying and asking me why she can't do it. She then takes probably 1 minute before moving on to the next word to a) recover from the difficulty involved in reading the word she's just read, and b) mentally preparing herself to tackle the next word, knowing its going to be a struggle.
3. Reading with her at home. Believe me, I'm doing this on a continuous basis and have been since she was in reception. It takes about 20 mins to get through 1 or 2 simple paragraphs. She is fully compliant with this, but there are days where she ends up so upset and distressed about finding it so unbelievably difficult that I do have to judge the impact of asking her to do something she finds this difficult against trying to build up her confidence and protect her mental health. She gets exhausted when reading too, as in I can actually see her face going pale after about 10 mins of struggling through a few sentences, and she does tell me often that she finds it really, really tiring. She comes out of school drained, not just tired. I do break it down to little 10 min chunks, but in that time we only get through a few short sentences.
4. Phonics. I have been teaching her phonics since reception. We know all about monster phonics which is what the school uses and every bit of resources I've asked them to supply me with is all about monster phonics. She KNOWS phonics. She sees the cartoon character and knows off by heart the sound it represents. She 100% knows Cool Blue, Angry Red, Miss Oh No, Yellow I. She's known these since reception and she's had them drummed in to her for 5 years. She has learnt them by visually looking at the character and then using her long term memory to recall the sound she's been told it stands for. It makes absolutely NO DIFFERENCE when she is reading. She CANNOT read the word. She can't recognise the letters within the word to make the sound required. Yesterday, the word 'look' was on a page of the book she was reading (trying to read) with me. Look. Simple word. We've come across it a zillion times before, I've taught it to her, I've taught her how to identify the 'oo' and to make the correct sound. I remind her every time we see it to remember the sound that 'oo' makes. I remind her about Cool Blue. It doesn't matter. She can't read the word. It appeared 3 times on the page yesterday. First time she stumbled so I helped her break it down by putting my finger over 'ook' and said "What sound does the first letter make?" "L" she said. "Good, well done! Now what sound do we say when we see o and o sitting together? Remember Cool Blue?" After some frowning and deliberation she remembers 'oo'. But she's not reading this. She's remembering that she's been told it makes that sound. "Great" I said, "that's brilliant effort, well done. So what does 'L' and 'oo' make the sound of?" "L.........oo........L.......oo.........Loo?" "Yes!" Massive smile from me whilst we're cuddling with her tucked in beside me. "What does this letter sound like" as I point to the 'k'. "K" she says. "OK, good. So, remembering the sounds of the letters you've just read, if we put them all together and join them up, can you tell me what the word says?" As I point slowly to the L then the OO then the K, underlining the word with my finger. "L.......oo........k" she says. "Yes, now join it up" "L....oo...k" "L..oo..k" "Looooooook? Is that it mummy? What's the word Looooooook? I haven't heard it before" "Do you recognise it darling? It has a shorter oo, so its not oooooooo (even though we've just established it was oo not oooooooo a few steps ago), it's oo. Does that sound like a word you know?" She shrugs, looks up at me worried, and holds her hands out and says "Look?" "Yes! It says look! Well done!" The next sentence on the page is a 4 word sentence. One of the words is 'look', for repetition purposes. We work through the first 2 words of the sentence, then I point to 'look'. We have literally just decoded it. She stares blankly. Nothing. She cannot tell me what it says. Yet she can recall incredible detail from anything other than letters, words and numbers.
5. After reading all your replies, I am totally dedicated to a private assessment. The reason I haven't done so sooner is because school have actively discouraged it and told me over and over again that it will cost me hundreds of pounds yet a diagnosis will make no difference to the way they teach her. They've told me it's not important. I will now take an assessment in to my own hands. I realise now that I should have done this a long time ago. I hope I haven't failed her. I have to say though, after 24 hours of googling I can't actually manage to find an Ed Psych yet!!! And of several specialist dyslexia assessors, 5 have emailed me back to say they are booked ahead for months, and 1 has availability next month but charges £800 for 1 dyslexia screen, nothing else is screened for, and I don't know at this point if I'm dealing with dyslexia, processing disorder, working memory problems, or a combination of all.
6. EHCP - I had no idea a parent could do this themselves! I've asked school in each school year she's been in, and they've always said she doesn't meet the criteria. Now I know I can do it myself I will! I had been led to believe it would be rejected.
7. I have now ordered Toe by Toe, and will buy Reading Egg. Given the difficulties I've detailed (possibly over-detailed, sorry) I hope these toe will still help her. We already have Lexia but she doesn't get on with this.
8. I have read up thoroughly on the BDA website and am going to contact them. And I'm in the process of requesting help from Helen Arkell.
9. I've started the process of applying for a rather hefty loan!!! Finally, gosh, if you're still reading by the end of this, then thank you!!!

P.S.
My post above is intended for all of you who have tried to help me, not just to Grimbelina.
I highlighted Grimbelina's post to mention about it making me feel emotional. Then I should have started a completely separate post to move on to the rest of my message that is intended for all of you.
Sorry, feeling a bit sleep deprived, been up most of the night reading and researching.xx

I can relate so much to what you have just said - the school sound like they are putting obstacles in the way rather than helping.

Would you consider a change as I did find ha I g the support at scho vital to getting this improving .

Also there is a resource called Calibre which is free for dyslexics and provides free audio books this help my daughter enjoy stores more as she could listen independently and definitely this impacted her williness to read for pleasure herself

*I have now ordered Toe by Toe, and will buy Reading Egg. Given the difficulties I've detailed (possibly over-detailed, sorry) I hope these toe will still help her.

1. We already have Lexia but she doesn't get on with this.*

Your DD sounds like mine as you describe hear trying to read - Toe by Toe was brilliant. It’s very prescriptive in approach but it does work.

Find a Dyslexia specialist and pay for the assessment yourself, if you can. Ours was £400, it’s the best money I ever spent! And move schools asap, yours sound unsupportive and disinterested in supporting your dc.

After a similar experience with Dd2 who was in Year 2 at the time, I finally lost it with the school and moved her. The new school got her reading within 4 months, all it took was patience and targeted support. She was like a completely different child when it came to learning, homework and reading. Her dyslexia diagnosis followed 2 years later.

We have a child who presents very like a close relative with ASD. I was repeatedly told at school and by a number of professionals (including a 'top' pead and team at a children's hospital) that my child did not have an ASD. They were wrong.

Sadly not all assessors are equally skilled (particularly if you have a child with a complex presentation or who is very bright/an exceptional masker) so do take recommendations and travel if you have to to get in front of the right person. We identified a specialist in the area of my DC's possible diagnosis and it was worth every penny.

Several years on my DC's ASD is now more obvious (and their current school have no doubt about the diagnosis) and I am sure that the original Drs etc. would have diagnosed too at this point... but so much time would have been lost and damage would have been done.

We were also told several times that there was no chance of an EHCP... I applied (the school wouldn't) and we now have a very comprehensive one.

One of mine was nearly 9 when they read but seemingly went from not reading to reading fluently.
I tried various ways to teach but it was stressful for them.

I think they just didn't get phonics and were reading more than they realised but didn't know it was right because they couldn't decode it using phonics knowledge.

Does your child recognise words with a shape, better than short words. At some point I realised my child could read the word chapter but not 3 letter words.
If theyre only being given books with short simple words in that might not be helpful.

What we found helped.....

Games - they enjoyed board games of all kinds and were good at strategy so that boosted their confidence. Some games have reading in but we didn't necessarily seek them out for that.

They did like card games like Pokémon. We read the cards to them until they memorized/recognised enough to not need us.

*We never asked them to try to read/guess at the words themselves as that would have been too much pressure. We just read to them whatever they needed.

Subtitles on when watching TV

Reading books for their age group to them - Harry Potter, Percy Jackson etc...
Audiobooks on in the car.

Graphic novels - reading these to them - you have to look at the pictures to get the gist so their also see words in a no pressure way. Lots of phonetic sounds written out to illustrate them 'kaboom' etc...

Reading books with rhyme and rhythm to them so they may memorise the words and learn to recognise them -giant jam sandwich, a poem they might like etc...

@Helena2000 i empathise completely

my daughter would come home crying saying she didn’t know why she found things hard when her friends didn’t, her confidence was shot to pieces, the school did absolutely nothing, despite her being a year behind her peers.

i took it on myself to get her tested for dyslexia. There’s a HUGE link between those who have speech therapy at a young age and dyslexia. Because my child had to have grommets, her hearing issues meant that she literally couldn’t hear the phonemes. So before you do anything else, please get her hearing checked, if the GP won’t help, you can do it via specsavers.

since getting the private diagnoses confirmed, it helped so much because I could explain why she had to many struggles, she now knows that it’s a superpower, not a weakness. Instantly her worries disappeared because she had an explanation for why she found it tough,

what has been the utter game changeR for us was signing up for a Dyslexia Gold subscription. It’s £24pm, and you can do a screener on it if you wanted to test her that way. There’s an engaging eyes game which strengthens the eye muscles

if you look here - the video is absolutely fascinating, https://dyslexiagold.co.uk/EngagingEyes

with my 8yo, we do it every other day and have done since June

at the start of the summer, she had a reading test through the app. She had another one last night. She’s improved by a year in just two months.

I honestly couldn’t rave about it more.

@Helena2000 i should also add, my daughter knows her phonics but she can’t compute them. The dyslexia assessor said she essentially had “phonics colour blindness”

My son was a late reader he learned how to read at about 8 1/2 we were worried about him as his peers could all read.

He got dispirited by all the reading books he could attempt being very babyish.Once they fall behind the books are below their intellectual level story wise and they can tune out.

What finally got him reading was a big push from me, and Captain Underpants series by Dave Pilkey which he actually found funny and enjoyed. The author wrote them because he was a late reader himself.
I used to read one word then him etc
Pure excruciating torture for me but it did move him on.

I hope some of the suggestions here help your daughter - keep at the night time teaching because you can make a big difference, even if they have ADHD or similar issues.

HayleyhasheKeys

Agree - two of my kids were self taught to play an instrument. They didn't move from simple to complex but started off figuring out how to play the sort of music they wanted.

Which pretty much mirrors how they learnt to read.

Eyes and ears. Have they been checked and rechecked?

What finally got him reading was a big push from me, and Captain Underpants series by Dave Pilkey which he actually found funny and enjoyed. The author wrote them because he was a late reader himself.

My daughter discovered Dav Pilkey's DogMan series this summer - she was obsessed. She literally read 8 of them over the holidays. Because Pilkey is dyslexic, he knows how to create a book that taps into their creativity and vision.

I did look into it, and there are a few dyslexic-specific publishers out there who will publish books specifically for kids with dyslexia. Making changes to the font/size/more visuals and even reducing the tone of the paper to stop the glare can make a huge difference.

I'd also suggest trying some dyslexia reading rulers/coloured overlays that you can buy from amazon for about £5. That way you can see if any of them make the text easier for your daughter to read

-You need to get a private Dyslexia and dyscalculia screening

• Request an Ed psych assessment
• Go through schools SEND policy and pull them up on all the parts they're breaking by not giving adequate support.

You have to hound people for referrals. The local authority relies on parents like you just taking their word for things. If the referral you're talking about is an EHCP, reapply. When you apply use the IPSEA website for guidance on what the criteria is. There's only two legal criteria for an EHCP assessment:
"The child may have special needs"
"The child may need extra support in class". If your child is 9 and can't read she meets both of those legal criteria. Everything else is just policy and means nothing compared to the law.

My daughter has quite significant SEND and the only reason anything gets done is because I push and I push and I push. The LA and school will always push back because they don't want to spend the money. So you have to push back harder. I say this as somebody who is waiting for a tribunal to be heard, so I've pushed a lot.

Unfortunately you're going to have to fight. And to be honest if you're daughter's school are refusing to support the best first step would be to research schools Ofsted's, and put her in one where good SEND support has been mentioned. A good school behind you makes the battle less lonely.

@needmorecoffeeandcake utter rubbish! I teach deaf children, some who have absolutely no access to sound at all and CANNOT use phonics. These children learn to read 🙄