Argh!! If DS isn't dyslexic, why the **** can't he read???

[MrsMcEnroe]

Background: DS (aged nearly 8, in Y3) has always struggled with literacy. Slow, halting reading; stumbling over words; not recognising basic words; reverses letters and numbers all the time; goes to pieces in any sort of test situation such as SATS. We had some private assessments done a year ago which showed that there was an issue with the ways sees/processes information (problems with visual processing). This is particularly evident when he has to do a written comprehension exercise: he just goes to pieces. Can't comprehend how to interpret what's on the page and answer questions about it. He can't read the questions on his own, ever. His spelling is atrocious. He is not, and never has been, remotely interested in trying to read anything by himself - e.g. when we are out and about he will not try to read road signs, shop signs etc, and if he is playing a computer game he won't even try to read the instructions (unless they are simple words such as "Enter," "Stop" etc). Whenever homework is mentioned he has a complete meltdown.

He is a bright boy (I know, everyone says this about their child, but his assessment proved it! and he is engaged with what he's learning, and has a good imagination, and excels at maths - he recently got over 120 on whatever those tests are that kids take every so often, but that's because the teacher was allowed to read the questions out. On the literacy tests, when he had to read the questions himself, he scored in the 90s).

In his Y2 SATs he only achieved level 1c for literacy - and even that surprised me, given how poor his reading is.

Until a month ago he attended a small private school which had zero SEN provision. We have finally got him into a fantastic state junior school and I've had a chat with the SENCO who is a marvellous man . He rang me today to say that they have completed their initial in-school assessments of DS and he scores ABOVE AVERAGE on everything. I was completely flabergasted. What this means is that DS does not even qualify for additional one-to-one reading in school, and yet HE CANNOT READ!! He really, really can't. His reading is so slow, halting and painstaking that it is painful to listen to. His eyesight isn't great but it is fine with glasses (he has been seen by the optician and eye specialist and there is no problem there). Whenever any of his friends come round to play they can read EVERYTHING - all the homework instructions, words on the computer screen, EVERYTHING - wherease DS struggles to read level 6 books in the Ginn 360 series. (Our DD, who is in Reception, is on level 4 - she's 3 years younger than him - I'm worried that this could become a problem for him).

So - why can't he read?! Is he just lazy? Does he just not understand WHY he needs to be able to read? What do I need to ask for? How to I get him the help he needs when he apparently doesn't qualify for it? The SENCO said that they will wait for the results of the Y3 SATS (which he's taking next week) and then see what to do after that, but as things currently stand DS does not qualify for any additional help with anything. I have insisted on getting referred to whichever NHS service it is that assesses children for learning disabilities (is that the right term? and sorry I don't know exactly who we've been referred to, I find it all very confusing) so we are waiting to hear back about an appointment, although apparently the waiting list is very long.

Argh!! Four frustrating years since DS started school and he still can't read or write properly. I just don't get it, and I don't know how to help him. I'm crying tears of frustration as I type this. Could the fact that we didn't find out about his poor eyesight (we'd missed the sight test in Reception due to moving house and moving schools) until Y2 be significant?

Please help - what do we do?

I live in Essex and dyslexia provision here is scant to say the very least. To access a dyslexia unit at secondary school requires a statement of special needs and such units are not in junior school.

Attila - sorry, I was referring to Annette Grounds at Colchester Hospital.

There may be behaviour optometrists and retained reflex therapists available on the NHS in other parts of the country - but I haven't heard of any.

My sister, father, Gran & I all have/had varying degrees of dyslexia. I also didn't get specs till I was 7, (my sight is truly abysmal!) yet none of us had the issues with reading my son has. I think the emphasis on phonics to the total exclusion of all else in modern teaching methods may perhaps be playing a part?

My son has other issues that have taken forever to sort out but Year 4 is going to be the year we get the 3R's sorted or die trying cos like you, I feel it's an issue that has gone on long enough & have run out of patience. Like you school seem satisfied with my lad's progress but the discrepancy between his "head" knowledge and what he can read and write is vast. He's far from dumb & loves to soak up knowledge like a sponge.

To be fair the school got the dyslexia team in at the beginning of the year. However the emphasis on phonics ignores the tiny % of kids who don't learn to read this way so their input has done no good at all. I've now gotten hold of the Ladybird "Peter & Jane" books that I used as a child to use over the summer to see if this approach may be the one that "clicks" for DS too.

I have a meeting for the end of the year to plan for transition and I suspect school is gonna get a nasty shock when they realise I'm not prepared to let DS coast any longer and that I actually expect DS to leave primary school scoring level 4's across the board to match his formal IQ tests in Yr 6 sats.

I know in my heart anything less would be failing him even though his current scores are only level 1's for English and Maths. What galvinises me is the knowledge that in much of Europe kids don't start formal education until age 7, so with as he himself is very highly motivated to learn nowadays, any failure to achieve this goal lies with the adults (inc myself) charged with his education.

I don't have any real advice, but have studied this thread with great interest and would love it if we could offer one another a bit of moral support on this issue as I suspect the hardest part is gonna be fighting the usual culture of low expectations. Perhaps the answers to my queries below my give the OP some new avenues to research.

Current actions:-

Physical causes = APD, no idea re visual issues beyond standard 20/20 vision.

DS has dyspraxic traits like many children on the spectrum so am wondering if the motor issues affect reading fluency in some way? (they certainly do his writing).
I'm distinctly underwhelmed by NHS OT so need to look elsewhere for aid on the dyspraxia, but tbh have NO clue where.

I'm trying to work out the best physical therapy for this in order to sort his handwriting issues - can anyone advise? (We are coming to the end of the Theodorescu programme - which has made a HUGE difference but there is still a way to go)

We are shortly starting a yoga class for Autistics, has anyone else tried this and did it help academics?

Can you do TH minus paying for the dietry bit? Not trying to sound arrogant but I know his diet is already as optimised as it can be for him & Tinsley House don't do indivudualised programmes in this area. I don't want to pay for the bits I don't need but my gut feeling is that their physical exercise programme and Visual Training may help him a lot.

I'm about to put in an application to the Caudwell to pay for the listening programme is this likely to help with reading? (No chance of official help with APD on NHS - 4 year battle and still no further forward than when I started, chams refused GOSH referral 3 times).

sorry for the essay, but I need all the help I can get to reset school expectations methinks

Not read the thread fully so apologies if I have missed something - I can HIGHLY recommend seeing a BO. We have just finished a course of Vision Therapy and it has helped my DS enormously. The BO will identify if there are any vision problems stopping reading and will fix them.

Hi Bochead,

My son (Yr7) has dyslexia and like your son, there is a huge discrepancy between what he knows and what he can write down. I have found that there are no quick fixes and despite lots of 1:1 help, dyslexia lessons and constant attention from me, he still only left Yr6 with a Level 3 in his writing. What bugs me is that the content and imagination in his work is excellent but you don't get points for this. You could write something really boring and yet get a Level 4 or 5. So, I wouldn't get too fixated on a Level 4, especially with the writing. My son has just been given the go-ahead to use a laptop at secondary school so I'm hoping this will be the key to the door! Perhaps you could get your son up and running on one. There are free touch typing lessons on-line eg: BBC Dancemat Typing. I agree with what you say about the phonic method of learning - I am pretty sure he learned to read by remembering the words - his decoding is not good but his memory is fantastic. So, good luck with the old style books. I am using these with his younger brother and having more success than with the phonic method.

Bochead, NiceWeather, I think that's true with my DS too - he just doesn't "get" phonics at all. What worries me about him not attaining level 4 or 5 by the time he's in Yr 6 is that I don't want him to be dumped in the bottom stream at secondary school - I know this is a few years off but I also know how long it takes to get a diagnosis (if such a thing is even possible) and to figure out what the best support is.

I am very, very happy to liaise with / support anyone else who is in a similar position and I am very grateful to everyone for taking the time to share their wisdom and experiences on this thread. Feel free to keep posting here, or PM me, over the next few weeks. I will post an update on this thread once DS' SATS results are known ....

WetAugust - I didn't think that you were being critical and I'm very grateful for your input. You are absolutely right that DH and I must keep searching for the right support for DS.

IndigoBell - I will investigate, thank you very much.

I think there is a lack of understanding about dyslexia, particularly in junior schools. My son was also given a computer test (Literacy Assessment Pack) and he passed. He is also capable of getting all the spellings correct in a spelling test but not in his written work - his spelling is dreadful and there will also be letters jumbled up in the wrong order. He also complains about the letters blurring and he has been helped by wearing tinted lenses but they have not been a magic wand. I think they have helped more with his maths than his writing. He had a full IQ test and in one test, he understood what to do but got muddled up going from left to right and up and down.

You could try contacting your local Dyslexia Association. Ours does a Lucid Lass computer screening test very cheaply. This showed that his phonological awareness was right down on the 6th percentile.

I was also very worried about him being put in bottom streams, especially in English and so before he started secondary school, I went and had a meeting with the SENCO. I organised this myself as Junior school never really acknowledged his dyslexia. Secondary school has been absolutely brilliant compared to Junior school. They got the measure of him within days and now he has started using the laptop, I am feeling very optimistic for the first time in ages.

I would really recommend audio books - my son will listen to adult books but there is no way that he would read them - he won't read for pleasure, despite lots of effort on our part.

Another thought... have you tried looking at any reading or spelling programmes? Have a look at Toe by Toe, Alpha to Omega, Word Wasp, Word Shark (computer programme). There are others. Having a go with Toe by Toe could help, they have a website.

I think we're getting somewhere!

Took DS to see a behavioural optometrist (found via Google) in Bournemouth. Have received the written report and you lovely people were right - he has a HUGE problem with tracking. His eyes move about all over the place when his reading, resulting in him getting tired really quickly. He also tends to start reading a sentence in the middle/end of the sentence -I.e. anywhere but at the beginning!

It explains a lot of his problems.

A 4-month programme has been recommended, involving a half-hour session on the computer 3-4 times each week. He is starting in 2 weeks' time. I will let you know how we get on.

We haven't had DS' SATS results yet and I will be interested to see how he got on! Apparently he did very well in the myths, but that's all I know is for.

Thank you everyone for your advice thus far!

He did very well in the maths, not the myths!

DS is awaiting a private Optromist & RF appt before the end of term, just to cross it off my list. I personally think his reading issues are linked to his known audio-processing and language issues but at this point I can't live with myself if I don't get it properly checked out iykwim.

I know what you mean bochead - you have to try everything just in case....

Did you find out any more about Tinsley House? It wasn't appropriate for my DS but I think you said upthread that you were interested in some parts of what TH has to offer?

I've gone for the Optometritist rather than TH at this point in time for several reasons.

DS is currently in the middle of one of those "multi-disciplinary" thingummies the NHS so adore. (is he/isn't he ASD?)IF it turns out there is an eye tracking & retained reflex issue then I think that the optometrist is more likely to be taken seriously by them & school. The optometrist is willing to write a report to feed into the pead etc.

I've spoken to TH and we'd get nothing from the dietry part of their programme at this point, (ony cos I've been on the diet case for DS since birth - this isn't the case for everyone). However I'd still have to pay for & go thru their diet programme. I'm just not one for going over old ground iykwim.

TH house has a bit of a "woo woo" rep amongst some conservative NHS circles & I don't want to alienate the NHS team this side of their final assessment, which is due before the end of term.

I have VERY limited funds so have to allocate them to where I think they'll add most value at any given point in time. I do have the Brain food plan book & we have been trying the excercises it lists at home for a couple of months.

MrsMcEnroe - great news.

Can you tell me which computer program you'll be using? Is it HTS (Home Therapy System) - or something else?

That's great, MrsMcEnroe. I hope the exercises are effective.

I think it's called Reading Plus but I will check....

Yes, it will be reading plus.

I'm very interested in it - please tell me what its like once you've started using it.

It's very good for eye tracking. But what I don't know is:

• do you have to be able to read to use it?
• does it work on convergence, or just eye tracking?

Ds's assessment will cover:- "fine motor control when using the eyes (including tracking), hand eye & body eye coordination, visual spatial awareness, visual sensory integration, visual perception and visual motor integration. I will also assess the presence of retained infant reflexes." - does that cover everything it should?

He's being assessed on Monday so I'll raise your queries about Reading Plus then if that's OK Indigo, as I'm also interested in the answers.

Next step is to chase DS's SALT as I haven't seen any targets/measures against progress expected since February & this is a concern as DS's receptive language deficits are undoubtedly impacting on his lack of reading progress. I loathe all the nagging & chasing that comes along with being a Mum of an SEN kid.

Bochead - if you go to the readingplus website you can see a video about it.

It's quite expensive. $300 I think.

It looks very good. I was very close to buying it on Mon.

But I decided to write my own instead :)

I've written a brilliant eye tracking therapy. Now just need to work out how to add convergence exercises to it......

The assessment you've got booked looks good. Behaviour optometrists prescribe retained reflex therapy which is really a competing neurodevelopment therapy to TH. it is very good. And my kids have done RRT before doing TH.

I'm really interested in all this - our son has dyslexia, dyspraxia and several other co-morbid conditions, mostly genetic. The diet seems an interesting approach but he has huge problems with fast transit due to connective tissue disorder and so fruit/veg are out, as are many others. We're on Eye-Q capsules now, to see if these help.
I'd love to know more about the glasses and over-lays, and I think that'd be worth a try.
ORT drove me to drink tbh, but we found the very non pc Peter and Jane books in a local second hand book shop and he loves them! [I love the non pc stuff particularly 'Grandmother and Grandfather do not go out very much any more, because they are old' - no beating about the bush there then!

I'm intending to invest in "something" IT & reading related this summer. DS is currently going back over the bits of clicknread phonics when he's in the mood. With the weather we are having he's likely to need more indoor activities to do than in previous years too over the summer holidays.

My reasoning is that he likes doing stuff on the computer, so he may as well spend time doing educational stuff. It's also a productive way of keeping a child who wakes as bright as a button at 6 am EVERY morning occupied, just till his slatternly Mum has had time to have a cup of coffee & enter the land of the living in a civilised manner.

I can only afford one programme though and "Headsprout" has a good rep for kids with receptive language issues, which DS has. There are a couple of other programme which have also caught my eye around too.

For keeping the little darlings motivated over the summer holiday re reading the summer reading scheme at public libraries this year is going to be "Science Lab" in England. Kids get a sticker for each book they complete, and if they manage 6 over the summer they get a certificate sent to their school. Some libraries do weeky craft sessions. The theme is a good one for Aspie types & boys methinks so might be worth peeps checking out.

I'm enjoying a sense of naughty rebellion over the Peter & Jane books, so deliciously un-pc for a Mum who has suffered a surfeit of caring carrot meetings over the years. They are like an antidote lol! When we've finished them I intend to indroduce DS to my childhood collection of Famous Five books. Thumbed through em the other night and the vocab is very simple for a child building up fluency and confidence. Too un-pc to get a modern teacher's approval but I'm past caring if I can get DS reading!

TH will prob' be on the agenda next school year, but I just felt the Optometritist was more complimentary to the other stuff going on for now. One thing at a time.

DS is having his first Reading Plus session on 28th June so I will report back here afterwards ...

What i like about it at first glance is that you have the option to do it at home, or with a one-to-one "tutor" at the optometrist's, or a combination of the two. We are going for the combination approach.

SATS results are back apparently so I'm having a chat with DS' teacher tomorrow morning ....

P.s. Indigo - I think it works on convergence as well as tracking, as DS' report mentions both, but I will confirm this in a couple of weeks' time