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.

This sounds so frustrating op.

Do school know about the possible genetic issue?

Can you outline here what it is? It might ring a bell with someone who could offer more advice regarding it.

Are you able to have a frank and honest chat with the teacher / senco? I would make a list of all the points you've mentioned here.

If your child's reading age is four years below her chronological age then I cannot understand why school have no plan in place, especially given her history of literacy difficulties. Is she part of any intervention groups in school?

I would be looking at school policies for literacy and special needs to see what their criteria are for addressing difficulties.

I would be seriously looking at moving schools if you cannot get support for her.

@Mrsttcno1 I read 3 times a week with her as recommended by school, keep being told it's not enough.

She's on the reading scheme still, equivilant of Oxford Reading Tree Lime so Mid Year 2 level I think.

I'm not noticing her getting better or worse. She's been on the same bookband all year because she's apparently not allowed to do 1-1 reading with anyone, so only gets checked half termly during guided reading which is in a group so she will refuse and they just mark it down as a refusal rather than anything else.

@happybluefern No intervention at all, she's still on the Reading Scheme but isn't checked at all. She does guided reading in a group but often refuses to do it because she hates reading, and they mark it down as a refusal and that's about it. No support nothing in place, they will not put her back on an IEP/ILP as they say they're for poor behaviour only.

The problem is OP that most dyslexia assessments still follow the “discrepancy” criteria for diagnosis as far as I’m aware. That means that in order to be diagnosed with dyslexia they need to have reading ability that is significantly lower than expected relative to her IQ. If she is also struggling academically in other areas (you mentioned times tables and cognitive difficulties) then she won’t meet the criteria for dyslexia. It is a specific learning difficulty whereas your DD sounds like she has a more general learning difficulty and/or developmental delay.

Do you have any local universities? Sometimes if they have a psychology and/or education department they will recruit children for studies and you will get a variety of assessments and often even a report as part of participation in research studies. This is always done for free, they cannot charge parents to take part. You could even look further afield - any university study about reading development or cognitive development will involve administering various batteries of tests and having all those done for free would maybe make it worth your while to pay for travel. They may even cover some of your costs.

Having said that the school do sound shit in that they aren’t adequately supporting her so I’d try to move her. But they may very well be right in saying she’s not dyslexic (given my comments above plus the fact that they will have taught an awful lot of dyslexic kids).

can you move school? As others have said, she could be on toe by toe or nessy or Lexia which are all really standard interventions so if they haven’t even thought of those I’d be questioning their entire literacy provision tbh

I can't move schools, not easily. ExH is adament she stays in her school and I'd rather not move her for what is a year and a bit really until she goes to high school. If she was Year 4 I'd take the risk of upsetting ExH.

I kept hoping it'd get better, but it's just got worse and I don't know where else to turn to get the support she needs.

I'm sorry you are having such a difficult time OP. I don't know why this country doesn't prioritise basic literacy more.

I have a dyslexic DS, now on track for A grade GCSEs, but during primary had terrible trouble learning to read and write. School were pretty useless. He did have some eye issues which we got sorted (convergence issues) and we used the dyslexia gold resources which really helped him to get back on track. It isn't cheap, but it is a lot cheaper than a diagnosis, and of more practical use for your DD. We did try toe by toe mentioned above. It is VERY dry, so depends whether you DD would tolerate that.

https://dyslexiagold.co.uk/Shop/Parents

I'm sorry you're going through this, it's a real struggle when school don't back you.

Re her reading you need to be doing this daily with her. Pick bedtime or after dinner one page you one page her, it really will help.

actually genuinely shocked there’s no intervention in place! To give benefit of the doubt it could be a very hard up school who can’t afford TAs but still… can’t imagine ofsted would look kindly on no literacy intervention offer! You can get Nessy as a parent which is one practical suggestion although not a total problem solver. Sorry to hear it’s been so difficult for you OP.

@Luckycloverz She's with her dad some nights and he won't read with her, I do a bit more on my weekends with her but 3 times a week is usually about our limit

You won’t get an EHCP for a child who is just working below curriculum level. If she is 3 years below I’m surprised she is not on the SEN register and an ILP, so maybe she isn’t that far below across the board?

@happybluefern No TAs at all beyond Nursery and Reception Year. There were parent volunteers doing reading in Year 1 until Covid but then nothing since then. Occasionally a TA is free but they tend to prioritise Year 1 beyond Reception due to the Phonics test.

There are things you can do at home.

The obvious is to read every day with her.

If school aren't being co-operative with the reading scheme then try the library there are usually books there for a variety of readers.

The interventions that school could be putting in place are

Toe by toe

toe-by-toe.co.uk

Word-shark www.wordshark.co.uk/wordshark/parents/

Lexia

www.lexialearning.com

You'd choose one of these not all of them and then do it every day.

I do think if you’re concerned about her reading it needs to be every day ideally, not just reading either but practicing phonics, play some learning reading games, read to her/with her, and including bits of reading throughout the day as well as just dedicating say 30 mins to read together of an evening so for example if you get the bus together read a sign on the wall, when cooking your meals read over the recipe together, reduce screen time right back if it’s high and replace the screen with reading/phonics games.

The same for handwriting, how often are you practicing that at home? There’s lots of resources for improving handwriting and most can be completed in 15 mins or less, practice practice practice is going to be key there and with the reading.

Schools sadly just don’t have the time to do 121 reading, it’s quite common for it to be class wide/in small groups, any 121 needs to be at home really with you or with a tutor.

I might suggest another hearing test too - I know you said she passed the reception screener but that would have been a while ago .

Hi Op, even if issues are not picked up at primary, this doesn’t mean it won’t be addressed at secondary school. I am not sure why the high schools you spoke to are providing you with such information. In my previous line of work in mental health, we would often have young people just newly started secondary school referred to our service. For the ones who struggled with their learning, I would always speak to the SENCO and they would follow up and put support in place.

@Mrsttcno1 She's with her dad some nights and he won't read with her, so can't do any more than that. I do a bit more on my weekends with her but really 3 times a week is our limit and I'm not going to stop contact with her dad just because he won't read with her.

Handwriting we practise when we can but she hates it so it's a battle to get her to do anything like that.

You can buy nessy reading and spelling to use at home on a tablet or phone, it's £65 but they've got some offers on I believe. Nessy is a game type programme for dyslexic children.

We have a LOT of children in the school I work at with mild learning difficulties and no behaviour issues. They don’t all get extra support outside of class because we can only give it to the children with the very lowest ability, and even they don’t get a lot. We don’t have resources to run interventions for every child that could benefit. Class teachers differentiate work to make it accessible to a very wide range of abilities.

They are all on the SEN register and an ILP though.

Handwriting is an interesting one - we had an occupational therapist in my old job who said poor handwriting is often a symptom of other issues which can be to do with gross motor skills (i think). So we’d refer for handwriting and they’d do loads of Wacky exercises on a gym ball etc 😂 occupational therapy is a bit like magic and I am in no way an expert on it so maybe someone can offer a better idea of what that’s about. My point is that sometimes handwriting practice doesn’t actually address the gross/fine motor skills that are causing the poor handwriting.

OP I understand how difficult this is. Are there other routes you can go for diagnosis such as via Camhs or the GP?

my youngest very clearly has adhd and Asd. My entire family has one or both. He is impeccably behaved at school and we are not troubled by his behaviour at home. But he is troubled by his behaviour his lack of focus and impulsivity. He cries within 10 minutes of getting home as a form of release because of the overwhelm of school.

Our GP clearly recognises what he called the most stereotypical textbook symptoms he’d ever seen but the adhd referral team said he had to be disruptive at school. School and the Ed psych refused to re-refer because he’s so well behaved and don’t care about how he is out of school.

We became pains in the arse. Write detailing everything that is problematic including evidence of each claim. Send it to whomever has already refused assessment and copy in everyone you can think of, the school, the. GP, camhs and your MP. If you are 100% sure that your child needs assessment and additional support then you’ll have to fight hard.

We’re not really looking for expensive school supports or medication at this stage just that he’s on the radar for when he inevitably does start to kick off at school and receives a bit of understanding from his teachers in the meantime for his quirks. It shouldn’t be too much to ask but when even the most severely affected children are struggling, you can understand why those who are just plodding along get left to it.

I was going to recommend this. The author also has another book stairway to spelling. They're both really good.

He needs to be reading with her, if he absolutely won’t then you need to be doing it whenever you can fit it in on those days even if that means doing a bit in the morning before school.

Every single day that you see her you need to be reading with her, even if its just 10 mins and even if it’s not sitting down to read a book it could be like I say, a sign on the bus, a recipe, the back of a cereal box, a phonics game on the way to school. If you are worried about the reading then reading needs to become a non-negotiable part of your day together in the same way that brushing your teeth is, it HAS to be done, no matter what.

Handwriting the same. She hates it because it’s hard and she has to concentrate to do it, the same as reading, but that doesn’t mean she gets out of doing it. Again, that needs to become non-negotiable. Any school is going to have hundreds of “priority” kids, the only person to whom your child is genuinely top priority is you, so yeah have the battle with the school but you have to be prepared to have the battle at home as well. You will see progress from being consistent with her far quicker than the school will, it is so obvious which kids have parents practicing with them consistently and across the board at home because although teachers try their best you really can’t beat the 121 focus you can give at home.

@Mrsttcno1 3 nights is all I see her, she's with her dad two nights and in breakfast club every day, either me or ExH drop her there. I can't quit work as I'm even less likely to be able to afford the testing she needs then.