My DDs not entitled to answers because she’s too well behaved and I'm failing her not getting answers

[ASystemNotDesignedForHer]

DD is 9 almost 10.

She has SN, what exactly I don’t know but I suspect dyslexia and/or other cognitive difficulties. She was on an individual learning plan in Years 1 and 2 but taken off it at the end of Year 2. I applied for an EHCP but didn’t have the schools backing so still battling to get one. She has the reading age of a 6 year old, can hardly spell and her handwriting is atrocious but school won’t admit it and say she’s fine which is making the EHCP battle even harder. School say because she behaves well, and basically tries her best she won’t get an EHCP or if she does it’ll be an unfunded one so basically not worth what its written on. They will not put her back on an ILP/IEP as they say she doesn't need one as they're for poor behaviour only.

Similarly there’s a genetic condition in her dads family (my ExH). Ex-MIL has it and ExH suspects he’s a carrier as DD has all the symptoms but we can’t get tested for it on the NHS as her behaviour and general well being is good – so she’s not entitled to know if it might have a future impact on her health until she gets to the point that it’s affecting her health, she’s not allowed to know if she has the condition so she can make decisions when she’s old enough to want her own children, she’s not allowed to know why she struggles so much. If she has the condition it will also explain the SN so would help with that but NHS keeps saying no to testing until it’s “absolutely necessary”. If she had the testing she could be put on preventitive treatments which in the long run are cheaper for the NHS as they don't totally mean her health won't fail but make it much less likely, Ex-MILs been on the treatment 15 years and had 2 flair ups in that time, pre-treatment she had a flair up every 8-12 months.

I can’t afford private being a single parent and I can’t get private dyslexia testing without schools input who fill the forms in with “no issues” and “testing not in the childs interests” so they wouldn’t go ahead, and I wasted £90 just on that initial consultation to try and get her tested (they had funding you could apply for if they went ahead with testing/diagnostics but it did need schools backing).

I am fed up of fighting a system that’s not designed for a child with mild needs with no behaviour issues. If she finds something hard she just doesn’t do it, and that’s allowed because she’s not causing a disruption. She’d not disrupt even if I told her to, she’d rather sink away and hide, her confidence is on the floor and I am so worried about her going to High School with a reading age 4 years below hers and no support at all in place. The high schools I’ve spoken to all say the same “if school don’t think she needs an EHCP she won’t get one”.

I feel like I’m failing my DD by not fighting for her, but I don’t know where else to turn. My PALs complaint came back with “the criteria for diagnosis is strict because resources are limited, your child not be seen unless there is a need for them to be”. So that’s it I have to give up fighting, and hope I can save what little I have an it be enough for private testing.

If you have 3 nights and her dad has 2 nights, who has the other 2 days/nights a week?

Op- If it’s any consolation my DD was behind with her reading, writing and spelling around age 6 but she was a very quick talker and ahead with her maths/numeracy. She didn’t have a typical dyslexic profile but did have many of the traits.

We got her tested by a local neighbouring education authority as recommended by the BDA about 10 years ago against what the school said but they did reluctantly write a report and sure enough she was dyslexic. This was cheaper than with an educational psychologist but the report was still valid as the lovely lady had the relevant qualification's. Like your DD mine didn’t have any behavioural issues she behaved well at school but the extra effort and concentration required for her work were wiping her out. Junior School and Secondary School largely ignored her report recommendations (as other children were much worse and more needy) and she received absolutely minimal support as she had worked out some coping strategies with the help of a teaching assistant that I paid to come to the house.

@Mrsttcno1 3 nights she's with me, 2 nights with her dad thats the week, then 1 weekend with me, 1 weekend with her dad. I do more with her over my weekend but I cannot up what I do with her in the week I just don't have time on top of everything else. I do read with her on those nights and we do practice handwriting and I know it's not enough but I don't know where else I can find time.

"ExH suspects he’s a carrier as DD has all the symptoms but we can’t get tested for it on the NHS as her behaviour and general well being is good – so she’s not entitled to know if it might have a future impact on her health until she gets to the point that it’s affecting her health, she’s not allowed to know if she has the condition so she can make decisions when she’s old enough to want her own children, she’s not allowed to know why she struggles so much."

This sounds confusing. If she has enough symptoms that you've noticed them, then why aren't they testing? Does the condition cause learning difficulties?

Was she year 1 during COVID? I wonder if she has never really learned the phonics building blocks, and so can't move forward. There's a lot of evidence about the massive problems that this year group have faced. Definitely toe to toe and if possible a tutor at home. Someone must do this with her daily though, whatever the reason behind it.

@Lougle NHS say until it starts causing her health issues they won't test for it even though it's in the family, even if ExH gets tested and he has the gene for it they still won't test DD until it causes her health issues and then they will test. But even then it has to cause repeated issues, 1 occurance of a symptom they won't.

It causes cognitive learning difficulties, including dyslexia (obviously not all people with it have all the symptoms) but DD is very similar to Ex-MIL at this age according to Ex-GrandMIL but we can't get her tested.

Can you arrange for a tutor on the nights she is with her dad, even for an hour maybe? Or straight after school?

Realistically it means every other week you can do 5 days reading/writing with her and on the alternate week if you focus on and do 3 days reading & writing that would make a big difference.

You do need to try and get her dad on side though, she needs consistency and to get into the habit of these practices being just as every day as brushing her teeth and hair, they just need to become non negotiable. As I say it doesn’t have to be sitting down reading for 2 hours every day, even if her dad reads 1 page of a book with her before bed and has her read 1 page, that would still add up.

OP, whereabouts in the UK are you? Some genetics and genomics centres will let you self-refer if the family is already known to them. The contact details for all the clinical genetics centres in the UK are here: https://geneticalliance.org.uk/support-and-information/genetic-services-and-testing/nhs-genetic-services-in-the-uk/
(Don't go into masses of detail about how the GP isn't willing to refer you, just say that ex-MIL has the condition and DD is showing some symptoms and would it be possible to speak to a genetic counsellor about your options.)

@Mrsttcno1 He will do anything with her, he won't take her anywhere to any groups he won't even let her stay at school and do activity clubs there on his night so I doubt he'd let a tutor in.

It's 3 nights 1 week and 5 nights the next and if that's not good enough then that's not good enough. I cannot do anymore.

What phonics programme do they use? How did they support her to catch up when she didn’t pass the phonics screen? If she still has gaps in phonics and can’t blend, they should be working on that with her using an age appropriate phonics scheme.
If she can decode, I would recommend echo reading.
If she is 4 years below where she should be they absolutely should be supporting her in some way. It’s completely irrelevant that she’s well behaved.
I assume they do standardised reading tests (PIRa/nfer or similar) what standardised score does she get in these and which year group test does she do?
I would start looking round for a school who will support her with reading if this one doesn’t.
She would be very unlikely to get an ehcp anywhere though.

I agree in part, but the school should be teaching her this, rather than having to get a tutor.

@Isitthathardtobekind I don't know her test scores, they've never told me them. I've asked for them before and been told they aren't relevant or needed. They won't give them to any of the parents, even those with DC on EHCPs can't get that information so I have no idea what her scores are or what tests they use.

@Iop Thank you a few of these are near to me, not my actual region but an email to them can't hurt.

Will also try the suggestion made earlier about contacting local universities and seeing what they offer.

So the school sounds appalling.

She absolutely should have an ISP in place if she is as far behind as you say - kick up a fuss and insist on speaking to the SENCO. Put it on them - what are they doing / going to do to help your child improve. Sometimes a chd just isn't very bright, or does have difficulties for whatever reason regardless of intelligence - that doesn't mean they should just be cut adrift! I would say it doesn't sound EHCP-worthy though...to actually get one of those is ridiculously hard, and they would say school should be able to cope.

Things to help:

Nessy - designed initially for dyslexic children, strong on phonics and over learning. You can do a free trial to see if it helps - search online.

Toe by Toe - I've seen this work miracles! I think it's expensive but SO effective.

Word tins - find out which words your child is working on / needs to learn. Focus on "tricky words" / high frequency words - non-decodable. They have to be learnt by sight. Write one word on each card. Talk about features with your child eg word shape - are all letters same size, are they tall at each end and small in the middle, do some letters hang below the others? etc You could draw round the outline to help make this obvious. No more than five words in a tin, use as flashcards. Or blutack around room and and to fetch a particular word. Use magnetic letters or Scrabble tiles to build the words - first showing the card, then hiding it. Once really secure on those 5 words, add two new cards to the tin. Rinse and repeat, making sure you revisit the old words too. This is a form of Precision Teaching - ask SENCO about it.

If ex-h won't read with her, surely he wouldn't refuse to just get her to read 5 individual words cards?

Good luck.

That makes no sense! Do they at least tell you if she is expected/working towards or lower than that? Who has put her on lime books? Can she manage short chapter books? Things like Isadora Moon/Flat Stanley/The Owl who was afraid of the dark?

Agree. Also precision teaching for tricky spellings.

Read to her. Even that will support her!

Echo read - read a page to her then read it sentence by sentence. You read a sentence then she reads the same sentence back to you (make sure she looks at the sentence and doesn’t just repeat what you say) then once done, she reads the whole thing.

Agree re Nessy.

toe by toe is a book you can work through so that’s easy.
https://www.thedyslexiashop.co.uk/products/toe-by-toe-a-highly-structured-multi-sensory-reading-manual-for-teachers-and-parent?gad_source=1&gclid=CjwKCAjw5ImwBhBtEiwAFHDZxzWYWSPFHuMb7AqLL37ZEk2ZfzNcZu7E7JNqPSFpVdvha1rPnlTbghoC4l4QAvD_BwE

Do you mean you requested an EHCNA but the LA have refused so you have appealed? If so, contact Parents in Need, they can sometimes help fund independent assessments. Also check if you are eligible for legal aid. That can fund independent assessments for appeal, too.

It is possible to get an EHCNA when the school could do more, but won’t.

I’d be trying my hand at a Freedom of Information request to get these scores if I were you OP. I don’t know if primary education is exempt for some reason but if not then I’d give it a go. It’s free!

It would be SAR rather than a FOI request.

Sorry yes @Headfirstintothewild that’s the one

Op please do your child the favor and find a better school for her. My sister was instant my nice stay in a primary that was failing her especially as she only had a year left. One year at this age can make a huge difference.

What is her current school like with SATS for example will they spend all of year 6 just doing SATS work. This won't be helpful for your daughter going forward. Please look for a school who is willing to be more supportive.

My DD’s friend struggled with reading, and, from what I observed on playdates, I thought dyslexia v likely, as did her mum (runs in their family)

School said is definitely not dyslexia and they sabotaged all attempts to get a diagnosis, which as you have seen is basically impossible without either school cooperation or a lot of spare money.

Her confidence was so low. 😔

Then her parents moved north, and so she had to move school.

New school said of course she can be assessed. The assessment found that she was severely dyslexic, and so the school put loads of support in place. She then flourished. She needed to be taught in a different way more suitable for the dyslexic mind.

Meanwhile her old school is still bloxking all parents who attempt to get any SEN diagnosis, because they don’t want to spend the money on supporting SEN.

I know this doesn’t help you but I wanted to show that just because one school is refusing to help doesn’t mean they all will. I really hope someone is able to help.

You need to either kick up more of a stink with school - maybe formal complaints that she isn't on the SEN register and isn't getting appropriate interventions etc or you move her asap. Personally if they haven't cared up to now I doubt they'll start so I'd see if there's anywhere else with better support.
Secondly if the LA say no to a EHC needs assessment you have to appeal. They say no to a lot of people. Send evidence of her lack of progress and difficulties to the tribunal and they'll order a needs assessment. You then need to make sure you get an Ed Psych assessment and OT assessment. If you don't get assessments you are happy with appeal to tribunal again. It's an awful process but if you can't afford private assessments it's what you need to do. IPSEA is the go to place for advice on this.
I'd forgo a holiday etc to pay for a private assessment if that's an option. Even if you get a diagnosis it won't mean extra support is put in place so prioritise getting an Ed Psych and OT assessment.

4 years behind and school are doing nothing?
Appalling. Regardless of their budget, staffing whatever else, that is a truly shit school :( I work in a special school and we have children with less of a gap than that .
Genetics aside, you really need to keep fighting the school (and the Ex) because they are failing her so very badly. EHCP... when they turn you down (as they will.. it's all about saving money ) DO fight them all the way to tribunal. Contact SENDIASS, enlist help .
Even if the EX is useless, there are extra things you can do at home that aren't 'work'. My youngest son (now adult) has ASD and learning disabilties (and still has the handwriting of a yr 1 child as an adult) . To help him, I typed up every day words and taped them to items round the house... literally the table had 'table' on it. The door had 'door' on it. We had every day easy words ..the sort you see in early phonics, and the tricker 'learn by sight' words stuck up round the house... made it a game.
Can you find 'the'? before I count to 10. It helped take the stress out of it. We also read food packets, road signs, you name it, every time we did something or went somewhere. He took a long time, but he got there and is an excellent reader now...and at 26 is finally reading for pleasure!

Submit a Subject access request to the school - this means they have to give you all the information they hold on her. This should include any assessment scores and teacher notes. Hopefully this will contain the information you need to insist that school provides more support.
Ask school for a copy of their policies on SEND and complaints.
Make a formal complaint that they are not offering appropriate support.
Contact your local SEND support and ask for local policies - this may help.

Your DD refusing to participate in class activities is a sign that all is not well. When school suggest there are no behavioural issues - you need to be clear that refusal to participate is an issue that they need to resolve.

The SEND code of practice contains lots of information about what school should be doing. It is worth reading through and looking at what school are not doing - and point it out to them!

Make sure all your communication is in writing - that way there is a paper trail. If you have a conversation with them, follow it up with an email to confirm what was said.

It is difficult - but not impossible with support. Come on over to the SEN boards and get some support from those who know!