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?

To cure DDs convergence problems we did a different vision therapy, and you had to wear red/blue glasses.

On the reading plus site I can't see any mention of red blue glasses. And I can't think how you could fix convergence without the red blue glasses.

So id love to know how reading plus does it :)

It does look very good, and you are lucky to live in Bournemouth, because I think she's the only optometrist in the UK offering reading plus.

(although I did also love HTS which my kids did)

I may be wrong Indigo but I will let you know, I promise

OK, quick update on DS' Year 3 SATs:

He got 3B in maths (yay!) despite having to read all the questions without help. He got 2B in literacy. i.e. not so badly behind that he sends alarm bells ringing in the teachers' minds.

He was 7.11 years old when he took the tests.

The good news is that his literacy has improved since Y2 SATS when he scored 1B / 1C. So at least he is moving in the right direction.

SENCO suggested that he may have a problem with his short-term memory and is going to set up some exercises for him. I honestly don't think this is the problem but it can't hurt to give it a go, and we are also pressing ahead with Reading Plus.

Great news on those results. 2b is only a smidgen behind.

It is very easy to test his memory. Google 'digit span test'. There's loads online.

Really Indigo? - the SENCO said that 2B is a whole year behind ...???

I will Google the digit span test, thank you

Had a bit of a spat with DS's teacher yesterday. He's still level 1 for his literacy at end of year 1& I'm expected to be content with that. I think he's 3 for science & 2/3 for maths. They are doing their SATS at the moment so I won't get the formal results for a week or 2 yet.

DS has a statement = abysmally low expectations it seems. So note to self for year 4 is to challlenge, challenge, challenge!

Mum on a mission alert - DS will bloody master reading by end of year 4 come hell or high water

MrsM - 2b is both a year behind and only a smidgen :)

2b is the minimum expected level for end of Y2 - but 2a is the minimum expected level for end of Y3. And given that your DS is 7.11, that makes him one of the youngest in the class.......

And given his rate of progress last year I would have thought there is every reason to expect he'll make a 3b in Y4 (which is where he needs to be)

Another thing to ask is did he have any help to get a 2b? Like extra time? Or a quiet room to sit the test in (so that he could read the questions aloud?).

In fact how did they decide he was a 2b? Was it from a SATs paper or from the teacher listening to him read?

If it was from a SATs paper, and he did it in the classroom with everyone else, then I personally would call it just a smidgen behind :)

Bochead - I (now) think its more complicated than low (or high) expectations.

Is there a typo in your post? Is he a level 1 at the end of year 3? That is not good, that is the right level for the end of year 1.

However - what can school do about it? Nothing. They don't know how to help him. If they knew how to teach him to read they would have......

So, what choice do they have besides telling you not to worry, it'll be fine? They can't ever admit they don't have a clue.......

The only thing they know how to do is 'overlearning', ie just teach it to him a 100 or a 1000 times and hope it sticks.

Even if school believe he needs vision therapy (which they're unlikely to know about), they can't admit it - because they can neither afford it, nor ask you to pay.

So what choice do they have besides lying to you?

Sorry about typo. Yup DS is level one at the end of Year 3. He was level 1 at the start of reception for reading.

Totally agree with you Indigo. I'm just long past the point where I wanna even attempt to pretend I'm OK about it though. Slow death by 1000 phonics flash cards is not the way forward.

I'll be honest and say that I had hoped the Tribunal won SALT for his receptive language would have helped his reading this last 6 months. It's a slow process of elimination with all these things though isn't it?

Bochead - it's a very slow process. But we will get there. We will.

I don't think it's exactly a process of elimination - I think our kids have lots of problems and you have to fix them all. So that is why it's slow.

DDs problems are / were:

• vision
• auditory
• memory
• slow processing
• dietary
• neurodevelopment

And it's take me about 3 goes to fix each of those problems. Ie she's now on her 3rd vision therapy and her 3rd diet. She's done 2 auditory things and is now on her 2nd neurodevelopment program.

It's not that the first 2 didn't work, it's that it takes a long time to properly address this stuff. (although some of the stuff didn't work)

However I'm really close now. I really think DD will be fine in 6 months time. DS1 is already fine - which is amazing.

So, it's taken me about 3 years (and about £3000) with each kid. But I have done it. And of course it's been totally worth it.

DS1 is starting secondary school in Sep and I'm not concerned about him at all.

You will get there. I don't know how long it will take. And it's certainly harder if you're on a tight budget. And I think your DS does have more challenges than my DS.

But in 2 or 3 or 4 years, you will get there. (although not though death by flashcard)

It's only in the last year or so, that there has been ANY official recognition that DS isn't totally NT so for a VERY long time I was plodding away alone.

Standard professional comment "he can't be ASD, he makes eye contact"
Me "I know, it took me a solid year to teach him to make eye contact"

Rinse & Repeat the above ad nauseum for a myriad of instrinic skills of varying complexity that most people take for granted in NT kids following the usual developmental pathways.

I can accept DS will never be NT, I can't accept he'll never read. He has an ever increasing thirst for knowledge and deserves the opportunity to indulge that.

The money & time spent on death by flash card could be better utilised on something that MIGHT help him ya know?

Bochead - become a school governor :)

My school are doing the Tinsley house exercises with 10 kids - and on Mon they're starting eye tracking exercises with those 10 kids

So far they've had huge success and are really pleased.

It's really quite a farce. On one hand they talk to me as a parent and tell me they're doing everything possible for Abby. On the other hand I'm advising them on dyslexia interventions

My LA would never "allow" me to be a school governor. (bitter experience talking here).

Your LEA can't stop you being a parent governor - neither can the HT.

Tis only the other parents who decide, via an election.

But I was only joking. I don't really recommend being a governor. sorry Badvoc

DS was seen in the CPOC clinic at Colchester County Hospital (now renamed Vision Training clinic) who seemed to carry more weight with the school/LEA than a private behavioural optometrist. NHS focus on underlying problems eg. retained reflexes, auditory processing problems etc.

Hollow laughter at the mere idea of getting anyone on the NHS to look at RF, auditory processing, visual tracking issues etc. It's just not gonna happen in this locale. For stuff like this my only option at this point is to go private. I don't like it, but it is the way it is. Luckily DS's school are very supportive of private assessments as they know it's the only way to get things moving forward. The LEA just ignore anything not laid down by Tribunal.

KeepingOn - as far as I know the CPOC centre in Colchester is unique in the UK. It is the only NHS place to do RRT, VT etc.

Everyone else not only has to pay but also has to suffer everyone thinking they're crazy for buying snake oil.

I know it is unique - and under threat - but given that others do not have local geographical service is it not possible to get what used to be called an 'extra-contractual referral' - ie out of county?

Update: DS had his initial session of Vision Therapy last week. The aim of that session was to set his baseline. It showed that he reads a approx 80-90 words per minute (which I don't think is true, I think he reads fewer than is) and the average for his age is 150. So that was useful, and it will be very interesting to see he progresses over the next four months. His first proper session is tomorrow, and we are going to do a mixture of sessions at home and at the optometrist's with the one-to-one tutor, who is LOVELY. We are going to aim for 4 sessions per week. DS understands why we are doing it and he knows that we are going to stick with it.

Indigo: there are no red/blue glasses, you were right!

DS also has an initial appointment with a speech & language therapist on Tuesday, on the NHS (the SENCO at his new school only sent off the referral form about 6 weeks ago so I am really impressed, after fighting for 3 years at his last school and getting absolutely no acknowledgement that there was anything wrong). I don't know if DS has anything "wrong" in this area but I will update later in the week.

How is everyone else getting on?

I think DDs eye tracking and reading is getting better. Will know for sure next week when we go back to TH.

But the really exciting news is that school did try the eye tracking program with the 10 Year 5s with literacy problems - and they all struggled.

So fingers crossed their reading all improves too after completing the eye tracking program. That will be truly amazing.

Just a quick response as I have only skimmed all your replies. My second son always struggled with reading spelling ect from reception onwards I told schools that he was dyslexic and tried to get help. We changed schools numerous times trying to get help. The drs were no help and generally the schools would not admit there was a problem....only that he was a problem child who was disruptive in class. He sat his gcse exams and did not reach his predicticted grades. We always knew he was cleaver but could not work out where it was going wrong. Next he did A level in art type subjects and got straight A's !!! He went onto university and started to struggle with the note taking and organisation required. Straight away the uni sent him for test only to discover he is severely dyslexic!!!! His IQ however is in the top 5% of the population ( see mum does know best ) he now receives help at uni in fact so much help he is embarrassed. The reason I am telling you this is so you don't give up or doubt yourself, I spent years thinking it was me or all in my imagination. But schools DO lie and they do get it wrong. I took his assessment back to his secondary school to look at and told them that the uni said that with help his GCSE results would have been very good. But now he has that on his record/ cv and it can't be changed. So keep on at them and don't stop until you are satisfied they are doing everything for your little boy. Also the school is now very helpful to his younger dyslexic sister!

That is a fabulous story Baffled and Bewildered. Well done for going back to secondary school with his assessment - hopefully that educate them and will help anyone that comes after. Junior schools are particularly bad at recognising dyslexia - my friend is a teacher and her Head actually told her not to mention the "D" word to any parents! I've had to do all the running with my son and secondary school are proving far more on the ball than Junior. Try a Google on Stealth Dyslexia and Twice Exceptional.... children with high IQ who also have dyslexia and therefore, the two things can cancel each other out and make the child seem average or lazy.

I have also experienced the 'no problems' for years - basically reception to yr 6. Things only started to move at the beginning of year 6 when DS had a private assessment which confirmed that he is dsylexic, dyscalculic and dyspraxic. He has been known to have problems with auditory processing, tracking, automatic hand-eye sequencing, low working memory, retained reflexes etc since 2009 when seen by CPOC. He has a referral to APD clinic at GOSH and is being assessed for ASD. The local LEA are finally carrying out statutory assessment.

Application for assessment was turned down on two previous occasions and has only now been granted because I have provided evidence of inadequate progress using the school data on SATs and ratio gain after reading the Rose Review of dyslexia which is used by LEAs. Accordingly a dsylexic child of below average assessed ability can be considered to be making adequate progress at 0.5 or 6 months progress per year in standardised reading and spelling tests. Expected progress is measured as 2 SATs sub-levels in a year but 1 sub-level may be adequate if it matches previous rate of progress, is not different across different curriculum subjects, does not increase the gap etc. Of course if the child is assessed above average or performs well in other subjects the ratio gain should be higher. Ratio gains should be calculated during interventions - a ratio gain of 1.4 or higher is indication that the intervention is having some positive effect. Children with no support whatsoever and who have not been diagnosed make between 0.3 and 0.4 progress.

Some of you have very good data that you can use to make the school increase the amount and effectiveness of support that they give and/or apply of SA - don't forget inadequate progress is a significant criteria for assessment. But don't expect the school or LEA or even a private EP to do this for you. Eloquent argument will not achieve this and schools often do not fabricate standardised tests because they think parents are only interested in comparing attainment with chronological averages rather than calculating the rate of progress or having specific knowledge of what it should be.

Good luck with the vision therapy xxx
DS did 4-5 months of it at the beginning of the year and his eye tracking was completely CURED :) So so glad we did it x

It has had lots of impact on his whole body, not just the eyes. We get his report at the end of the week, and I am expecting to see a big jump in writing from last year :)

Thank you . The session at the optometrist's went well yesterday, and DS did a session at home this morning and enjoyed it