School dyslexia/SEN testing- at wits end

[Lilibobo]

I don’t even know where to begin, I’m so frustrated. I’ve had various meetings with school teachers who are also concerned about my daughter but we keep getting fobbed off by SENCO over and again. Because of covid. Because of a new class teacher needing to observe her first. Latest thing is they just didn’t screen her for months because she got ‘missed’, even though it was one of the first things her new teacher brought up.

They’ve finally done the dyslexia screener and it came up as unlikely she has dyslexia - testing as over or above average in all areas. Including spelling.

She is 8, coming to the end of year 3. No matter how much practice we do she scores 0/10 every week on spelling tests and it’s killing her confidence. She wrote a little note for me yesterday, in which ‘this’, ‘our’, ‘speak’ and ‘same’ were spelled wrong. She puts capitals in random places, doesn’t leave spaces between words (or will randomly put a massive space in), reverses letters constantly. Even when copying them directly off another paper she still reverses b, d, q, p. Yet she was classed as the high end of average for the spelling element of the screener? She can’t spell ‘you’ at the age of 8. I feel like I’m being gaslit.

She scored above average for reading. Even though all her friends are reading chapter books, and she is still on picture books. Her reading is better than her spelling but while she is now able to read ‘little bunny’s bedtime’ and Mr Men fluently, her classmates read Horrible History books independently. And she is supposed to be above average?

We have a lot of concurrent difficulties that make me suspect ADD. She has articulated what it’s like trying to concentrate, her behaviour has always suggested it. But that’s not measurable so they won’t test for it. But they screened her and she came back as having no difficulties with writing? I don’t know where to go from here. We practice so much and get nowhere. Getting her to go to school in the first place is increasingly fraught and no wonder when she gets marked down all the time for her writing. She does her tests and gets 0, every week.

Does anyone have any advice? Has anyone been through this? It’s so hard.

I don't think that any children are 'just stupid' (although some are more academically able than others)

It won't be the dyslexia diagnosis that got him extra time, but because the tests show that he is significantly slower at reading, processing or writing, than most other students his age. Schools can do these assessments themselves and will do before SATS/gcse etc- there is no need for op to pay privately for this.

If you DO want to spend some money, £1000 would be MUCH better spent on a literacy tutor than an ep report

Lol, no, not even slightly. I studied English at oxbridge uni. Our living room is lined with bookshelves, I also did courses in fairytales and children’s literature. We’re related to authors. One of the most stressful things is how unprepared I was for this as I’ve never known what it’s like to not be able to read.

I find ways to make practice a game. I make up stories for her to use with her spellings, word recognition. Her class work reflects her inability to write well. Her weekly spelling test always comes up 0. Her past 3 teachers have been concerned.

I work as a specialist dyslexia assessor. Details of specialist assessors can be found here on the Patoss tutor/assessor index www.patoss-dyslexia.org

The cost is not insubstantial but you could book in with someone for a few months ahead and spread the cost if that is a possibility.

Are there any dyslexia charities nearby that could help with costs? I am aware that the Helen Arkell Centre in Surrey do this.

You might want to look up the Nessy programme and work on this at home to support her spelling. The hornet literacy primer is a spelling workbook you could work through together at home.

In terms of ADD that would be a medical diagnosis and you are best to go to your GP and school SENCO with your concerns

I've just taken my Dd for a private dyslexia screening. It was £70. The screening assessment was 1hr, I get a report back and a follow up conversation without Dd being present. It might be worth seeing if you can find a local specialist to do a screening.

I see there's lots of discussion on the thread about private vs not private, whether anyone will listen to a private report. That's something you could ask your school?

Where I live the LEA doesn't recognise dyslexia, so private is the only way!

Just to be clear in talking about a screening, not a full assessment. So a first look.

ADHD assessment is about £900 round here but I believe you can ask for one via Choose and Book.

It is totally possible for bright, dyslexic kids to "pass" the screening tests, because they have build up compensation techniques. It all starts falling apart when they don't have sufficient spare brain capacity tho.
Ignore the screening results. It sounds like you know something isn't right (dyslexia and/or something else).
Work out a route to get the support your daughter needs.

she absolutely has done this and is very bright- very good at thinking outside the box. In year 1 we had a meeting as she kept drawing in class instead of doing her work. I looked at her book- it turns out she was drawing cartoons that answered the question as she didn’t know how to write the answer.

It’s that route I’m struggling with. SENCO keeps knocking us back. GP won’t act without school’s supporting evidence (which they won’t give since she’s supposedly ‘average’- despite class teacher concerns.) I’m not on a high wage so it will be a while before I’ve saved up enough for private. But it seems like this is the only option.

Ask the class teacher if they will
write a letter with their concerns for you to take to the GP, it doesn’t have to come from the SENCO. You might find that your DDs end of year report reflects some of her difficulties and you can also use this as evidence for a referral.

Current teacher is only temporary (yet another issue sadly). I will ask him and have asked for another meeting but there will be no follow up as he is not staying on beyond end of year.

We got DD assessed last year aged 17.

I wish I hadn't listened to all her teachers saying she wasn't so bad etc.
After a proper assessment and seeing how low so many of her scores were I'm amazed she coped as well as she did at school ... until she didn't and had a MH collapse in y10.

I guess I also want a bit of reassurance. It is so hard doing this alone. It’s not ‘normal’, is it? That she can’t spell our or same by the end of year 3. That she’s still on Miffy instead of books with paragraphs.

We've been there back and forth and then screening test saying everything is fine and now waiting lists now likely to time out.

https://www.soundfoundations.co.uk/learning-to-spell/

If you have the time - these help - practise and breaking down words but it's a long slog but does work.

I never managed to get first primary to stop weekly spelling tests and it did huge harm to confidence - second school used https://www.nessy.com/en-gb - but IME sound foundation is better but you need time to sit down regularly and work at it.

https://www.spelfabet.com.au/ - it's Australian pronunciation so not that helpful for UK accents but there's resource lists and some reading round area.

Proper assessment would be better but expense is a barrier to doing it privately.

We had success with "not meeting his potential" when a teacher pointed out his written work was crap compared to how he was verbally. In some ways the screener might give you that ammunition - if her spelling is average, how do you explain her weekly spelling test results averaging 0 despite the 30 mins a night you practice (and if you do written practice, keep a weeks worth to demonstrate that she isn't getting 0 because you leave her to it). If her reading is average, why hasn't she progressed through the bands.....

If you have access to a device with a proper keyboard, teach her to touch type, and use spell check to her advantage.
Produce any "project" style homework electronically.

I can't help with the route to getting a full evaluation, as ours was done while out of the uk, but the best part of it was the "things you can do to help" section, which encouraged alternative ways of producing work, phonics assistance through toe by toe (which he hated, but admits helped), and the "gifted" label he gained at the same time which got a load of traction at school!

Good luck. It's a fight worth winning.

We used Reading Eggs and Teach My Monster to Read when DD was younger. They're not too expensive and "gamified" so quite fun.

I know the SENCO uses Nessy with DD at school.

The good news is, what research tells us about literacy difficulties is that there is no golden hour like with learning a language- children can may slow and steady progress right into adulthood.

I would treat her as though she is dyslexic and ask school what the process is for getting her on a sen support plan (that is prior to ehcp). You could also ask them if they have access to specialist literacy teacher or in school Ed psych to comment.

Sorry if this is stating the obvious, but have you had the basics (sight, hearing) checked?
Also does she report any difficulties with words moving, blurry etc

Another dyslexia assessor here. Just wanted to say that screeners are just that - they can give false positives snd false negatives, and they should only be part of the decision about whether to investigate further. Also, it's perfectly possible to score at average or even above average in some literacy tests, and still be dyslexic or have another SpLD. It's the overall pattern that an assessor would look at. If you can save up for some private assessment I think you'd find it helpful.

My son passed his phonics test in Y1 with flying colours - absolutely no idea how! He was diagnosed with significant dyslexia and ADHD in year2. His reading is pretty awful and his spelling is so much worse. He is so clever though.
Getting him diagnosed was the best thing. It was a massive boost for his self esteem (he had started to think he must be stupid because he couldn't read like the others in his class). It helped his teachers really understand him and identify his strengths too. He got an EHCP and specialist dyslexia tuition as part of that.
If you can stretch to an Ed Psych assessment do it. Ideally get one that comes recommended and is tribunal standard - then it's likely to be thorough.

Yes, she wears glasses (and has a spare pair in school because she kept forgetting them) and hearing is fine.

I really appreciate all these responses. It’s very helpful and a lot to think about. I’ll start putting a plan into place of how to afford private measures.