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.

@pitchfever She has a reading age 4 years below hers, she failed the phonics screening in year 1 and the times table check last year in Year 4. School have said she definitely has something but because her behaviour is good it's not their problem.

I can’t comment on the health angle but on dyslexia testing, you don’t need the school’s backing to get a private assessment from an educational psychologist. You need about £700-900 which is in itself a barrier, but not permission.

The school sounds awful and I would honestly look at moving her somewhere they have the children’s best interests at heart. It may indeed be difficult to get her an EHPC but they should still be supporting her learning needs in any way they can. A dyslexia diagnosis will help her get additional support in secondary too - you don’t need an EHPC in place for extra time, scribe, reader etc. in exams.

@RaspberrSeed I don't have £900 though hence why I went to somewhere where I could apply for funding, but it needed the school to say "yes it's an issue" and they just won't.

I've spoken to 3 high schools in preperation for her going in 2025 and been told that if she has no support in place now the High School won't put it in place.

She's Year 5 with a reading age of Year 2 which is worrying, will she be a year 7 with a reading age of Year 4? Her handwriting is still Reception age, she's nearly 10! Her spellings are appalling, she seems to have no ability to learn them.

Yes as above dyslexia testing doesn't need school support. And school sound likely they're being REALLY awkward. They don't want her testing as they'll have to budget for the support she needs...

Have a look at https://www.texthelp.com/en-gb/products/read-and-write-education/?fbclid=IwAR3NWm2-X31P7P0mgGLaXpok8cUYBRF4M3HnBLzjtVGQXazFYjT1kiIuP9U

If you can get this on a computer at home (you can get a free trial, then you might be able to sort out coloured sheets, different fonts etc to see if that helps ... it doesn't help all dyslexics but is certainly worth a shot!

A lot of dyslexic children get the ‘she’s just not that bright’ line at every turn. Dyslexia is divorced from intelligence- it’s a reading and language processing difficulty. You can have a very high IQ and yet be totally unable to spell. Getting a diagnosis can help the child and everyone around them realise it doesn’t mean they aren’t smart. Please be careful with this kind of ‘advice’

Things that might be worth trying:

In most cases before checks for SEN or SN are done it's worth getting an eye test and a hearing test.

I'd particularly focus on these - if she is having trouble learning to read there may be eye problems and if she failed the phonics test there may be ear problems.

Not all children can learn to read using phonics. More learn using phonics than learn using the other methods but if phonics hasn't worked for her it could be for one of two reasons - either she can't hear properly in which case fix that and the phonics will be successful or you need to look at other methods.

What does your GP say? Have you been referred to community Paeds? They can then refer for testing.

The fact she is well behaved is completely irrelevant.
my son is so compliant, a real rule follower and always tries his best.

however he has had an EHCP for 7 years as he struggles in some areas - autistic.

if she is struggling with work there really should be an EHCP in place

How much would the genetic test cost? In your place I think I would be willing to give up 2 years of holidays takeaways birthdays and Christmas gifts to get the test done

@Octavia64 She has glasses and these are checked regularly, she passed the Reception hearing test.

@FlowerBarrow And i still wouldn't be able to afford it, the genetic testing is £1000 just for the blood tests without anyone looking at the results or having an initial consultation to decide on the best testing. I'd need £4-5k minimum I think I just can't do it.

I have one holiday every other year that costs less than £1k because I stay with a friend who doesn't charge me for accomodation or food.

Ok well that's good news that her vision and hearing are ok.

There is a general article on phonics and alternative approaches here

www.twinkl.co.uk/blog/phonics-isnt-working-for-my-child-what-next#:~:text=Pack%20for%20Parents-,Look%20and%20Say,cannot%20be%20decoded%20using%20phonics.

When you say that she failed the phonics test, where roughly is her reading ability?

Does she know that letters make sounds?
Can she recognise high frequency words like "the"?
Can she blend at all?

There are quite a few interventions that a primary can put in place for children at this level - do you know if they have done any specific programmes with her?

I am so sad to read this. If you know what the condition is that your MIL has can you see if there is a charity linked to it? They might know how to help you fund the tests or know hot to support you. Good luck.

I have an appointment with an EP coming up for youngest for £450 and we've previously had a Dyslexia assessment with a specialist teacher for £550.

Who at the school are you talking to? Have you been to class teacher, SENCO and HT? What interventions have they put in place if she is so far behind in reading? If you can't afford to pay privately you really need to keep on at the school. My local education authority also has an EP helpline where they give advice over the phone for parents of children with SEN - have you looked for something like this in your local area?

You can massively change your dd's reading ability by using the book Toe-by-toe with her every day. It breaks down the reading process and addresses micro issues. Don't underestimate the power of your own help.

@32softfeet School are doing nothing, I've spoken to the SENCo, class teacher and the Head (3 different people) and keep being told because she's well behaved she will never qualify for support.

I applied for the EHCP but it's a battle because I don't have schools backing, so council keep saying at every opportunity "School don't think she needs extra support"

@Itsinyourhand I do know the condition yes, I will look into charities, I had a look awhile ago and couldn't find one, but maybe Ex-MIL will know of one.

She doesn't need an EHCP to have a learning plan or interventions. Most children with SEN don't have an EHCP.

10000% this!!

I was going to ask how much reading/writing/spelling practice etc you are doing at home OP? How much are you seeing by way of progression in your own teaching with her? Have you considered a tutor? A tutor would give the benefit of 121 teaching as an obvious one but on top of that it’s a professional who gets to spend 121 time teaching your child and who may be better placed than her school teacher (who probably has 30 kids alone) to able to spot any difficulty

Also I worked in a secondary for many years.

We regularly have children coming up to secondary who struggle to read. Some can't read at all and we need to do phonics with them.

It's increasingly common at secondary. Most children at that level will drop a language and do additional maths and English lessons in that time to help them with the basics.

Also, for GCSEs students can apply for extra time, readers and scribes if necessary. Many students who struggle with handwriting will type their exams on a computer. (My DS did that - his handwriting was very slow and frankly unreadable).

We used nessy typing to teach him to touch type as it teaches typing and words at the same time and is good for dyslexic children.

@Octavia64 She doesn't decode or blend at all, if she comes across a word she's not seen before she will just guess and move on. She's on the equivilant of Oxford Reading Tree Lime Band, so roughly mid Year 2 level and she's in Year 5.

Re EHCP - even with the school on board it doesn’t immediately sound like you would get one for her learning needs, don’t know about health. This *in theory sounds like something school could accommodate with differentiation and targeted interventions so they should be trying that and showing it hasn’t worked. I’d expect her to be on the SEN radar but EHCPs tend to be a bit more complex. Does sound like the school are strangely incurious about her progress though, is there any intervention in place? It can be a bit awkward for schools to address the fact that being below age related expectations doesn’t necessarily mean there is a specific learning need, age related expectations are averages and someone is going to be below, and that can be quite a bit below, but I would be expecting some sort of intervention to be taking place.

Have no idea why high schools would be saying they won’t put anything in place without an EHCP- I used to work a lot with year 7 and it would have been very misguided to do that. You basically uncover a load of unnoticed learning needs in year 7 because the context is so different.