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.

@yellowjumperoo ed psych assessment might well just recommend a dyslexia friendly literacy programme like Nessy or toe by toe, as several posters on here have. Also, it sounds like there is a lot more the school could be doing that they haven’t done, so not a lot for an Ed psych to unpick really. I mean it sounds like a rally bad state of affairs that the school isn’t offering even the ubiquitous Toe by Toe so even with an Ed psych report didn’t sound like they’ve got the skills to act on it.

signed - someone who has read their fair share of disappointing Ed psych reports 😂 and I wanted to be one!

I’ll never forget the first year 7 meeting for parents held at the end of year 6 for our secondary school. The head teacher introduced the head of SEN and said “if your dc has know additional needs, that will be passed on to us by the primary and Mrs smith with liaise with the school and contact you, the parents, to get a full picture. If your dc doesn’t have confirmed Sen BUT you as the parent are concerned something has been missed, please email Mrs Smith. Often things are missed at primary and we know the sooner dc get interventions the better. You know your dc so please tell us what you know. We want to hear.”

This speech really stick with me having watched 3 close friends battle with primaries refusing to acknowledge likely dyslexia, dispraxia and autism. Even this secondary head didn’t trust the primary schools to do this fully.

so, my advice is, speak to dc’s secondary Sen lead at the earliest point and raise your concerns. Get them on the radar and hope secondary will be far more supportive.

I’m so sorry OP - this is a horrible situation and the system on SN is so broken.

This a bit of a roundabout suggest but is there any benefit or opportunity for testing via your MIL or exH? For instance - could you ask you MIL to ask at her clinic whether there is any current research in this genetic condition you could participate in as a family? And/or could your exH try and get tested as a potential carrier (let’s say, he wants to have more children and is concerned he may be a carrier…)?!

These may not be super fast or direct routes to helping your daughter, but if having the condition is already documented and being dealt with for one family member there may be ways to take you closer that are initially indirect.

Im sorry, I know it’s really an approach of last resort but sometimes you can find an indirect path that gets you to your destination in the end

💐

There may be an element of ‘lack of trust’ in this - a good SENCo will know which primaries are a bit crap - but it also speaks to the differences that show up in different environments. I always found this fascinating- some kids who come into year 7 with a massive folder of paperwork and have clearly found primary really difficult fit in well at secondary because it meets their needs ie. a boy with ADHD who found the structure of secondary school much easier to navigate than primary. On the other hand children who cope well in primary can start to struggle at secondary for various reasons. Eg. Autistic traits that genuinely might not have been noticeable at primary can come to the fore. I also had a boy with an EHCP and not even his parents knew why he had it 😂 that one was honestly baffling. The EHCP was so vague I have no idea how it got through. The primary school has seemingly identified issues at some point but they were not apparent in year 7.

as you can see from various posts on here, even the definition of ‘Sen’ is really nebulous. EHCPs are really, really blunt instruments in trying to assess levels of Sen as good, inclusive schools won’t necessarily need them because they are meeting need well through their General practice. Other parents have to get EHCPs through, at personal cost in money and energy, just to get schools to make really basic reasonable adjustments. Eg, it doesn’t sound to me like OPs daughter should need an EHCP but if that’s the only way to get support people will obv push for it.

its all just a big bundle of contradictions really.

Hi OP,

Sorry I haven't read the whole thread, just your posts, but have you seen this documentary:

It shows how coloured filters can really help dyslexia.

I wondered if you have also tried turning on the subtitles when you watch tv and talking her through the text a bit. My ds learned to read that way.

It might also be worth seeing an optician who is on the list of this charity if you have one nearby. They would spot dyslexia and a consultation would be fairly similar in price to a normal eye test.

https://www.covd.org/

Good luck there.

@happybluefern i agree with everything you’ve said. I just found it refreshing for the head teacher to say they wanted to hear from parents - it felt very genuine.

It sounds like at lime band she can do some reading by herself. Could try writing down words she doesbt know.
She can then read at her dads. Maybe with rewards or pocket money.
Is she reading a whole lime book in one sitting?
How many has she read this year?

If she cant do phonic it wull take oonger to learn but she would still be ffluent by this age. It would be very time intensive.

At dc school they seems to decide some kids wouldnt sit the SATs in y6 and so their abulity was left at y2 level.
Maybe set her 1 chapter book a week to read over Easter?

Kindly OP, you have been given a raft of excellent suggestions and advice here and have batted every single one away with excuses. Your attitude is to look for the reasons why you can't do something rather than trying to find a way to make it work. The solution is unlikely to be one thing done perfectly, but a mix of the above done consistently as often as you can possibly shoe horn it in.

If the school aren't acting to catch her up and don't recognise her struggles, you absolutely should move schools regardless of there being one year left.
DD1 has SEN that caused her to be behind in a number of areas despite interventions, extra work at home, and a tutor. She moved to middle school this year, and the with more targeted daily help they've been able to offer (the benefit of a bigger school), she has made 4 terms progress in 2. The right school can be the difference between falling further behind or catching up.

On your days, you need to be doing reading every evening and morning IMO, if her DF won't read on his days. All other in-school learning hinges on being able to read, so this needs to be the priority in you time.

It may mean saving for a few years for the testing, but that's still better than not testing at all if you feel so strongly it would benefit her to know now. You are being weirdly evasive about what the condition is, which is a shame as there is a good chance there will be a knowledgeable poster who could help further with how to access more affordable testing.

You want a Help2Save account if you are on slow income, it'll mature when she's at secondary and you can use it for private assessment if necessary

Having worked at a secondary it wasn't unusual for children to come from Primary and not have had their needs met, having children with reading edges at 6.0 years was not unusual and we got them tested and support in place. You just need the right secondary SENDCO.

Hi @ASystemNotDesignedForHer

Kudos to you for all the ways you are supporting your daughter. You are working hard, and perseverance will get you where you need to go. What a fortunate girl to have such a comitted mum.

You're stuck in system that is not offering help for what your daughter needs, your ex seems unhelpful and even wants to block the possibility of her transferring to a school that might actually help her, and you must feel exhausted from it all. Yet, here you are, posting and seeking more ideas and advice from others.

You often see the worst side of the world when you're fighting to get help. Also in this situation where one parent is doing the heavy lifting, the parent reaching out for help is typically the one who is scrutinised and criticized for what they are and are not doing, and they don't usually get recognition of how bloody hard they are working.

Give yourself some care and rewards for all the good you are doing for your girl. You will find the way through even if you can't see it now, and your girl has the best support and care because she has you.

In the kindest way OP you have been given a lot of advice here, much of which you have insisted not work for you.

WRT a dyslexia assessment, if school is not supporting you getting one, it is necessary I’m afraid to seek a private assessment. They do not cost thousands though. I took my DC for a private assessment and it was possible to offset most of the private fee against their results being used in a research program. He turned out not to be dyslexic, but to have a different condition that the private clinic were able to successfully help him with. Although his primary school were not helpful, it would not have helped him for me to push for or wait for a dyslexia assessment anyway.

Her father really needs to step up and help if she is struggling - either by allowing a change of school for her, or reading with her daily, or both. Parental input cannot be underestimated here, and you cannot reasonably expect any school to compensate for the inadequate performance of one parent when it comes to learning support. It’s not fair on the child for one parent not to support her, and it’s not fair on the other children in her class for school to have to give her a disproportionate amount of their time and resources because one of her parents won’t give her support at home.

As for the genetic condition that may cause dyslexia - what condition would that be? I’m a bit confused by this one too. If it is a condition that can be tested for, there would certainly be a charity that would assist you with obtaining testing. I cannot think of a single genetic condition that could affect the long term health of a child that the NHS would not test for simply because a child is well behaved. We need to know what exactly this condition is before anyone can give any meaningful advice here.

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

I’d echo this. It’s not complex or high tech but it’s incredibly effective and just needs 10 minutes 3 times a week.

My DD was struggling with reading, with a reading age of 5 aged 9 - she does have learning difficulties but the school just didn’t have the resources to give her the support she needed.

I found a tutor who specialises in additional support needs, who started her on Toe by Toe. My DD is now turning 13 and her reading age is appropriate to her age, she has started reading YA novels such is her confidence and ability.

I’d keep pressing the school, but also take her learning into my own hands.

I know the frustration despite a strong family history of SEN - we were often fobbed off and then came on here and was told of course you can afford ££ - when I was at time struggling to afford the prescription charge for my preventative medicine.

If there is any choice in secondary - ask about SEN support and try and pick a more helpful school.

My DC are now teens doing well - we had limited money but we did have time - I think your issue is you are low in both.

We didn't get on with toe to toe - did get on with dancing bears https://www.soundfoundations.co.uk/product-category/dancing-bears/.

For our child much younger than your who couldn't blend at all - we started with bear necessities A1 - there was a tip in there about shouting out the sounds to blend was the turning point for him. 10 minutes a day.

Handwriting - you can try grip pens and slopes and activities that build up co-coordination - bead threading etc - but below is a book that is a program of such exercises.

https://www.amazon.co.uk/Speed-Up-Kinaesthetic-Programme-Handwriting/dp/1855033860/ref=sr_1_1?crid=G6T0JALYQO40&dib=eyJ2IjoiMSJ9.mwMUQiO6eUfAEBb6QdfL-WnYYdkGn6KpUE4DX1eFDBufLyeU0c8EwyteB3XqSs0PhWpgtS687eQ2D6HHFkHL3DM93A8Kb_cziluwJBIbWCQYkYqxLplb3UHIqZb4b9QwN5HF6ClduXScVkwM8gSRwa9aoMRM1UVF_9B97LCd_NUjft00Rg4PVNutNIccm4RC23o8ja33y7U0VMzRTlKMzHMpJKm51tJcny0vJKYQTzE.V8ta0vZtbb8Sog4WnYwoIxowdYOemsue9AFbsYsXzFQ&dib_tag=se&keywords=speed+up&qid=1711532888&sprefix=speed+up%2Caps%2C123&sr=8-1

Nessy been mentioned but https://www.teachyourmonster.org/ is another it was fun enough it felt like play and was free and I think still is - wouldn't rely on it alone but it helps.

There is lot s that can be done at home - primary board when mien your young were full of very helpful teachers - but it does take time and energy and with kids that tire more easily.

The problem is the school may not help which leave you either buying outside help or trying to do it yourself. It is worth keeping on at the schools - they decide she gets put in some program - but if there is an underlying condition looking for support groups there may well be best way to navigate though to get support and perhaps how to get genetic testing.

Totally agree. I was under the illusion that schools teach everything until I had kids and realised 1-2-1 at weekends/ afterschool made a huge difference. Doesn't mean they have issues (even if they did its beneficial) but with bigger classes and more disruptions its hard for kids to learn.

Firstly, your daughter's school sounds shit!

You'd struggle to get an EHCP but that doesn't mean she shouldn't be on the SEN register. Mind you, if there aren't TA's in every class as well as the odd INA per year group then the school are probably right that the children more in need of assistance would get that support first.
You said you don't want to move her for the sake of just over a year but a year at this age will have a HUGE impact!

Secondly, your ex sounds as shit as the school! He doesn't want her to move schools? He doesn't want to read with her? Presumably him and his family aren't suggesting ways to fund the health screening? Why? Why won't he? What's his reasoning?

Things you could try ...

I've worked in a primary school with SEN children and non SEN children. The BEST intervention that I used to deliver is Precision Teaching. I was less than convinced when I was trained in it but honestly, the results were amazing!
The children I worked with were mainly year1 and year 2, so younger than your daughter. For the absolute lowers, I just focussed on recognising individual letters. For the more able children, I taught them blends ie 'sh' 'ch' 'th' etc etc. Then we progressed to year 1 and year 2 high frequency words.
I can't remember the website we used but you could download the Precision Teaching template. Basically, you choose maybe five letters/blends/words and you write these at the top of your sheet and then randomly throughout the boxes on the sheet. You then make individual small cards or squares with the same letters/sounds/words. You then play games for eight minutes (I sometimes did more, sometimes less!) The games could be snap or pairs etc. You then time the children to see how many of the letter/blends/words they can read in ONE minute. The idea is, that during the course of a week, the child improves their score and when you think they are confident, you change to a different set. If they're still struggling on one or two, you can incorporate these into the next set.
Honestly, I was very sceptical but for ten minutes a day, the results were huge!

Also, if you suspect dyslexia, you should try to use coloured overlays when reading. Your school really should have these available to try. Also, exercise books with coloured pages instead of white. Again, this should be available in school.

I really do think you need to get your ex on board and seriously consider moving schools. It's not good enough to just say he can't be bothered, or it's the school that should be doing everything because that clearly is failing your daughter right now.

Okay - you are not failing her.

Re: making a parental request for an EHCP needs assessment, all you are asking for is an assessment of her needs at this point. This is based on the fact that she might have SEN (you can evidence this) & that she might need a plan.

No-one knows if she needs an EHCP or not at the moment, the local authority certainly don’t as her needs haven’t been assessed by professionals, but they will be as part of the assessment and then you will have the opinion of an educational psychologist.

I understand that it is hard when the school can’t be bothered to support this and and are minimising her needs.

I think schools sometimes block this because A) There is a lot of paperwork to fill in B) They will be expected to provide evidence to the LA, showing what adjustments are in place and what process they have followed… lots of schools haven’t done this properly (if at all!) so it’s understandable that they don’t want to provide evidence that they don’t have.

But, that isn’t your problem and it isn’t your DD’s either.

Ignore school. If have already applied and been turned down by your local authority, and you have missed the period to appeal, then apply again.

School have to provide what they have got (ask to see a copy of the EHCP forms that they send back) & they have clear evidence that your DD is working years behind.

When the local authority say no again, and ignore the law, then you appeal straight away (the appeal forms are simpler than the initial forms). If it did reach the tribunal stage then it’s a paper based hearing anyway. It is highly unlikely to though, as when it gets to the LA legal team they will probably change their minds and agree to assess after all.

If you want to, DM me and I will send you some links to information to get you started again.

You should also have a SENDIASS service in your area, google for the local number and give them a call. It’s a free service and they can support and sometimes attend meetings with you.

It might be worth emailing some local educational psychologists who test for dyslexia privately, explaining you are a low income single mother who cannot afford the standard fee and asking if they can offer a reduced rate for testing.

I know many private counsellors offer reduced rates for people who can't afford but really need counselling - maybe some EP will be the same as they know the difference testing can make for a child.

Hmm, you are making a few assumptions here about the SEN knowledge of the headteacher and SENCO.

There are some absolutely horrendous SENCO’s out there.

I had a SENCO tell me that there was “nothing wrong” with my child and that I suffered from anxiety. She actively tried to block assessments and an EHCP request.

3 years on… my DD has got a place at a specialist autism specific school (funded through her EHCP, which she did get after I applied). If you read it, you would see that she has very complex needs and there was no doubt about this in the minds of the experienced and relevant professionals who assessed her (it’s worth noting here that they weren’t primary school staff of any kind!)

As a CAMHS psychologist said to me, “When school say a child is fine when they are here, what they often mean is ‘this child doesn’t cause us any problems when they are here’”.

Parent blame is real and it’s the mothers who are always blamed. “Mum is anxious”, “Mum is difficult” etc. I have met so many parents of children who have similar stories.

Why?

Children do not need to be academically behind in order to be assessed or to get a plan.

If you have been told that then the person who told you that is lying or mistaken.

The OP is complaining about a lot

The school and every member of staff she has engaged with on the matter including HT

SEN department at school

NHS

her ex husband

Honestly doesn't surprise me at all - SEN departments at 4 schools/college have mostly not been helpful and individual teachers attitudes varied only one every came up with a program that helped - as her DN had used it - often it went it'd fine oh there a massive problem oh I'll get back to you on helpful idea - radio silence and repeat. Primary board here was full of helpful teachers posting though.

My DH was frequent in denial about how bad our kids were - then panic then over time denial again.

NHS - stuck mine on waiting lists that times out or pinging us back to SEN departments. My experiences on NHS more widely is it's a postcode lottery outstanding treatments to dire in same institution with budget constraints.

I thought it was bad - but had friends with kids with physical problems and saw fights they had for resources and adjustment that were agreed then not followed through on or appropriated elsewhere.

It can be an incredibly lonely frustrating place knowing your child is struggling and having to fight to get support.

This won't help you with the school (which does sound unhelpful), but when I was a teen, I used to read with our next-door neighbours' little girl, who I knew from babysitting. She was dyslexic, but the idea was she didn't do "hard reading practice" with me.

We did a half an hour book club, where we had the same book and both read bits. I'd read more at first, but we'd play games where she had to read every name, or every "little word" like and, but or or. Or we'd do a sentence each, then a paragraph each etc. Or we'd each be a character and do all their speech each etc. Sometimes I'd mainly read to her, but she had to follow along in her book.

I don't know if you have a friendly local teenager/babysitter/grandma she could do fun reading with once a week? I think it helped because she wasn't trying to read in front of her little sister (higher reading age than her), she wasn't worried about pleasing or disappointing her mum etc. She felt grown up going to book club too (we always had a drink and nice biscuits!). And we read books she probably couldn't have managed on her own, but she was interested in the story of.

I came to say the same thing. You need to intervene and you need to intervene now. I used this book with my daughter. Her reading age just took off once it all ‘clicked ‘.
Unfortunately the schools really don’t have the funds to get most children any additional help. The funds are for the most severely affected children. Parents have to step up and support their children at home. It’s not ideal but it’s what’s happening.
Ask for a copy of her most recent Cat/Nrit test.

Year 4 TA here. I came on to say Toe by Toe is an excellent resource (£20 on Amazon) but also to ask do you read TO her? Getting her into the right mindset to want to read sounds like one of the hurdles you need to overcome. The school and SENDCO sound a bit shit but they can't magic up staff, time or funding and that's probably why they're being the way they are. So my suggestion is let her choose a book and you do the reading, take the pressure off, remind her why stories are fun and hopefully get her into a better headspace for something like Toe by Toe.