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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

To be worrying so much about DD 9 and in year 5 having a reading age of year 1

112 replies

Helena2000 · 06/09/2023 07:44

Hello everyone,
I'm feeling lost and am looking for some advice.
My Dd is 9, starts year 5 this week, and cannot read beyond early/start of year 1 level.
She spells every word phonetically, she cannot spell any word correctly, even CVC words.
She has no diagnosis of anything but school have placed her on their SEN register.
What this means in reality is that she gets taken out of class every day in to a group of 3 children and a TA to do different work to the rest of the class. The other 2 children have severe behavioural needs, which the TA struggles to manage whilst my DD sits there not receiving any attention or input because she is well behaved and compliant. She has told me she gets given colouring in to do whilst the TA tries to manage the behaviour of the other 2 children who argue, fight and disrupt the group she gets taken in to. I have fought and fought against this but school tell me its that or she sits in the main class.
DD tells me that when she does sit in the main class, she literally does not understand a single thing the teacher is teaching, but looks around to see the rest of the class can understand and get on with their set work, whilst she thinks to herself 'why can you all understand but I can't?'.
School did a dyslexia screen which they've told me shows that she is not dyslexic.
I'm at a loss as to why she has such a significant learning delay in reading, spelling and also maths.
She is incredibly intelligent. She's bright, alert, astute, is fully engaged with the world around her, has a brilliant sense of humour, is extremely empathetic, kind, gentle, so very thoughtful, notices so much of what's going on around her and is very in tune with other people's feelings and emotions. She adores art, dance, stories - her favourite thing in the world is to be read to (I read books and stories to her daily), animals, nature, playing, swimming, crafting. She's highly imaginative, loves playing with her sibling and her friends, she has friends who love her, her older sibling literally adores her, she is the chattiest little girl ever - she chats away to me non stop and her use of vocabulary is impressive and very varied, and her comprehension of what new words mean is really impressive. She's affectionate, loving, and just a little angel.
I'm describing her character to you because I'm trying to convey how bright she is as a person.
But tonight at bedtime she spent 2 hours crying her eyes out, her little face looked like she was in so much pain. She cried and cried about not being able to read. She told me her greatest wish is to be able to read, and said "I feel so stupid", "I feel so ashamed", "I'm so embarrassed about myself" all through terrible tears. She was clinging on to me, wrapped her whole body around mine, asking me to please help her. She said every day she misses her class lessons because she is taken out of class in to this little group of 3, that she gets no benefit from. She said co.ments from peers who ask her why she can't read are making her feel stupid and worthless.
I have spoken to the SENCO at school about her not benefiting from being in tbe 'focused learning ' group at school, and I was told very starkly there are no resources to give her any other input, i.e. not enough staff to offer any alternative, due to budget cuts.
I don't know how to help or what to do.
I've noticed that I can teach her a word, go over it in repetition, she'll appear to get it, and then within 20 seconds it's gone again and she can't recognise or remember the word.
Some words that I ask her to sound out, she guesses the word based on the 1st letter, or she says words that don't even contain the letters that are in the word I'm trying to teach her to read.
She is a gifted artist for her age, and often draws what she's seen that day, and she'll draw the most incredible detail in something that I can't believe she even noticed. So if she notices and remembers this much detail, how can she not notice the detail in a short word, or remember it through repetition?
School are adament it's not dyslexia because the school screening test came back as normal. I've had this conversation with them several times over.
Another thing is she cannot pronounce her words properly. Examples are that the W in 'Weather' is pronounced with her front teeth on her bottom lip. For Never she says 'Nether'. These are just 2 examples, but she mispronounces words hundreds of times a day. No amount of non-stop, endless correcting of her pronunciation by me ever, ever teaches her to remember how to say the word properly. In fact it's counter productive as it upsets her when I correct her, even though I do it in a softly spoken, swing and encouraging way. She just gets really frustrated.
I requested a SALT assessment 2 years ago via school and theyve told me she doesn't fit the referral criteria because she can talk fluently. Ive pushed this in meetings and been told the same again.
She has very poor short term memory, but excellent long term memory.
She struggles to follow instructions that have more than 2 steps involved, or with any instruction that's too complex.
She regularly says "What?" "Pardon?" "Can you say that again please?" But it's not to do with her hearing ad she can hear a pin drop in the distance! She's had her hearing tested and it's good. It's more as though she is asking the person to repeat themselves so that she can give herself more time to process what they've said before she responds.
she has had hearing tests and eye tests - hearing is very good. Needs glasses for reading but her prescription is borderline ok, not severe, optician said not crucial that she wears her glasses as she can manage fine without.
She needs a lot of time. Extra time to do things. Rushing her if we're late sends her in to a complete meltdown and she says she can't cope with hurrying up or rushing.
School teachers and SENCO don't even seem worried. Every school year is the same; unworried teachers. Every ADPR meeting is met with a teacher gushing with enthusiasm, telling me she's a pleasure to teach and that she's wonderful at drawing and popular with peers. I get inwardly really cross. I'm not there to hear about her drawing. And the teacher doesn't teach her. A TA does. Although she doesn't teach her either due to the disruption of tbe other 2. And I happen to know the TA outside of school and she is new to the role and has no experience in education whatsoever, comes from a totally unrelated background of work.
I've been told by my local authority she doesn't qualify for an Ed psych referral.
When I relay my concerns to her teacher, she smiles brightly and says "Don't worry! She doesn't need a diagnosis! It makes no difference at all to the way we teach her!" all delivered with a megawatt smile and an abrupt end of responding to my concerns.
Maybe they're fed up with me saying the same concerns every time we meet, I don't know.
She has started constantly apoligising for things she does not need to be apilogising for, and i think this is a sign that her self esteem is being affected, which I cant bear.
I have spent every day of her life telling her and showing her how much I love her. I continuously give her positive feedback, praise, encouragement, I listen to her, I try as hard as i can to give her a happy life filled with different experiences, but its not enough.
Can anyone advise me?
I need to know whats going on.
And my DD is begging me to know what's going on.
Phew, I haven't said all this to anyone in real life, except to DH who just says "She'll catch up" and dismisses my concerns.
Thanks for listening!

OP posts:
littleducks · 06/09/2023 12:38

If you can afford it (ball park £1.5k) I would look at getting her an MDT assessment like here Ed Psych/SLT/specialist teacher as you've identified some working memory and auditory processing red flags and they can give you a profile of strengths and needs
https://www.meathschool.org.uk/assessment-centre/

I don't know why there exact link isn't working not of you Google there is a pdf with more info about the address

Assessment Centre | Meath School

Meath School

https://www.meathschool.org.uk/assessment-centre

Patchworksack · 06/09/2023 13:44

Just to add that we found a book called ‘Just Like Me’ helpful for self esteem - it’s short one page biographies of people who have all sorts of neurodiversity or physical challenges and have made a success of themselves. Perfect to read a page at bedtime.

Patchworksack · 06/09/2023 13:45

Image

To be worrying so much about DD 9 and in year 5 having a reading age of year 1
Helena2000 · 06/09/2023 14:56

Gosh thank you so much everyone, I'm overwhelmed by your amazing, supportive and constructive replies, it's actually moved me to tears that you are all trying so hard to help. I have felt so un-listened to for so long about this; thank you all for listening and feeding back.
There's been so much advice and information posted, I will keep reading and post again this evening!
Key point I would like to know though: I'm confused - do I need to find a private dyslexia assessment on it's own, or do I need to find an Ed Psych assessment who will assess for dyslexia as part of a wider assessment?
No I don't have money to afford private assessmentand tutors, I work and DH works, both frontline workers for the NHS, but we are middle income earners who are feeling very squeezed by the cost of living ATM! No savings between us. I will take out a loan to fund this.

OP posts:
LoisLanyard · 06/09/2023 15:10

I haven’t read all the messages so apologies if this has already been suggested. We have been where you are and it makes me angry that people still have to go through what we went through with our now 15 DS. The being dismissed and not helped. We had to get a private assessment - it wasn’t cheap but it gave us what we needed to speak to the school without being brushed off.
The British Dyslexia Association and the Helen Arkell Dyslexia charity websites are a good place to start for info on assessments. Waiting lists can be long so I would be tempted to register with a few assessors now and then worry about how to pay for it later.
Again, this might have been suggested but get your DCs eyes and hearing tested just to rule any issues there out.
Good luck. You are not alone with this!

Geneticsbunny · 06/09/2023 15:30

I would spend your money on. Aprivate dyslexia assessment. Ours was about £100.

The school should get an ed psych assessment done once you ask for an ehcp assessment.

Puffed · 06/09/2023 15:32

id recommend contacting your local sendiass service and tell them all this. Sounds like you need some independent advice about a) accessing assessments b) EHCPs c) what to say to school and d) what support your daughter should be entitled to. It all varies slightly by area by where I live your daughter would be able to access salt assessment, specialist teacher or Ed psych assessment and then, with the evidence from this, an EHCP. She sounds brilliant and full of potential with the right support.

Ffghhhbdbfb · 06/09/2023 15:43

The school is failing her horribly and are holding her back (sitting drawing with disruptive kids) while the class learns. Can she have access to a tablet and do an online course like Fast Phonics, while she is out of the class. Not ideal, but better than nothing.

TMess · 06/09/2023 15:49

I haven’t read the full thread so apologies if I missed it; has she had speech therapy? One of my children simply could not make sense of reading until their speech was corrected. Those sounds in that order just didn’t seem to make sense to them. As you say, we’d go over it 20x and they’d seem to have it…encounter the word three minutes further down the page and it was like they’d never seen it. Fixing their speech so they understood how the sounds worked made a massive difference and it finally “clicked”.

Spendonsend · 06/09/2023 15:51

From what you said, a full ed psych that could cover dyslexia but also cover other issues woukd be better.

I appreciate its time and money but they are also supposed to suggest strategies to help not just say this is a problem.

You could try a tutor with experience in dyslexia and processing issues as they might know all the strategies out there anyway but it would involve a bit more trial and error.

Rocketpants50 · 06/09/2023 15:57

Sorry not read the other messages but I would find a local tutor specialising in dyslexia, ask them to do some sessions with her to see if they can get to the bottom of it. Many children don't get a diagnosis of dyslexia at school but actually are. Tutor could then advise what she actually needs and you can go back to school with a clear plan of what she needs. Sounds like the school at this point is not meeting her needs.

Rocketpants50 · 06/09/2023 15:59

Also have a look on the Nessy website, lots of dyslexia information on there which may help and some screening tools.

Bimblesalong · 06/09/2023 16:04

If only looking at dyslexia, a specialist teacher should be cheaper than an EP. Shop around but do find the right person for you rather than the cheapest iyswim.

AuntieObnoxious · 06/09/2023 16:16

I’m so sorry to hear this, but you must act ASAP
Your DD sounds very similar to my DS, who’s now 16 and just about to start his post 16 course in a supported learning unit at college in his chosen career. So there is a good future.
MY DS couldn’t read & had language issues - especially pronunciation. His reception teacher spotted that he had a problem & told me we’d get problems getting help as he was a compliant child with no behaviour problems. I.e. easy to sit in the corner & forget about.
Luckily he was already being seen by speech and language therapist (SALT), and she requested paediatrician support for an ASD assessment. Even if there’s no evidence of ASD it sounds as if there is cognitive issues, such as memory processing.
I also got our GP involved who supported the paediatrician referral. We moved primary schools just to get DS in with an excellent SENCO in year 4. If that isn’t an option tell the school you will be escalating this with the Local Authority (LA) if your DD Sen needs aren’t met. She should at least has a IEP (individual educational plan) and just keep fighting. The school can also apply for higher needs funding.
It’s really hard & time consuming- I was really lucky to get voluntary redundancy so I had time to spend getting everything in place. My DS got his EHCP for year 6 who helped massively in getting him into the right secondary school.
As for self esteem, focus on what they’re good at. My DS was good at Maths and sport in primary.
Good luck and keep going.

cestlavielife · 06/09/2023 17:00

She needs a private assessment urgently so you get the right secondary
Beg borrow but you need to have her assessed (again) processing disorders dyslexia etc

cestlavielife · 06/09/2023 17:01

She needs a private assessment urgently so you get the right secondary
Beg borrow but you need to have her assessed (again) processing disorders dyslexia etc

tulipsunday · 06/09/2023 17:10

Specialist dyslexia assessor here - Look at the Patoss website and you will be able to find a specialist assessor near you. Check they have an assessment practising certificate.

September is my busiest month for enquiries so I would really recommend contacting people now as there will be waiting lists.

Some assessors will let you spread the payments so worth asking. Happy to answer any specific questions.

Helena2000 · 06/09/2023 17:41

When people are saying get an Ed Psych, is that an Educational Psychiatrist or an Educational Psychologist??
I don't even know the difference between the two!!
I'm googling like mad in my area (SE) and am finding nothing!

OP posts:
tulipsunday · 06/09/2023 17:52

Educational Psychologist. From the BDA website may be helpful - Both Specialist Teachers (who are AMBDA qualified and may hold an Assessment Practising Certificate, APC) and Psychologists are able to accurately assess for dyslexia; in practice there is very little difference between the two.

There may be some instances where an Educational Psychologist needs to be used instead of a Specialist Teacher, for example where an individual has more complex or multiple needs or where it is felt that they may have co-occurring difficulties (where an individual has other Specific Learning Difficulties alongside their dyslexia). In such cases the additional tests used by psychologists may be able to tease out these subtle differences in an individual's overall profile.
Specialist teachers usually have more experience working, and often teaching, in an educational setting.
Both Specialist Teachers and Educational Psychologists can diagnose dyslexia and can make recommendations about how the individual can best be supported.
Where an assessment is being used to support disciplinary/dismissal/tribunal activities we would recommend an Educational or Occupational Psychologist carries out the assessment. Also if your child is likely to need an Education, Health and Care Plan (EHCP) in the future.

Bootoagoose123 · 06/09/2023 17:56

I haven't had time to read the full thread so apologies if someone has already said this, but if private assessment isnt an option for you then you need to start kicking up a fuss. Ask for a meeting with the senco, the head, the governor in charge of SEN. Sadly the state of funding in schools atm means that often quiet, struggling children are totally overlooked and the time and focus is spent on the ones that are disruptive. A school might get an allocated number of Ed Psych appointments to use per year and there's basically a waiting list of need. Children are often prioritised as they move towards secondary if they have a good teacher pushing for them not to leave without a diagnosis. Sadly the school might still not offer much better in terms of support but from experience, a diagnosis can be really positive for bright but struggling children, as it helps them to understand why it's so much harder for them. All best of luck and I'm so sorry your dd has been so let down.

phobiaofsocialmedia · 06/09/2023 17:58

She sounds dyslexic - we had to pay privately as school were useless. We managed to get it for £300 through an SpLd assessor or something - maybe ask on local Facebook group. They were much cheaper than an Ed Psych.

We also did Toe by Toe - DD pretty much fluent reader within a year of starting that. Would recommend it if she's willing.

Despite diagnosis, school are still pretty useless sadly.

Sounds like she is emotionally intelligent which is common in dyslexics.

Puffed · 06/09/2023 17:59

Helena2000 · 06/09/2023 17:41

When people are saying get an Ed Psych, is that an Educational Psychiatrist or an Educational Psychologist??
I don't even know the difference between the two!!
I'm googling like mad in my area (SE) and am finding nothing!

Sendiass will be able to help with some of these questions. I’d really recommend contacting your local one.

Andbreatheee · 06/09/2023 18:02

Oh OP I welled up reading your post, that is heartbreaking for you both 😞😞 No child should be made to feel that way, ever ever ever. If you can afford it, then seek a private Ed psych report. It sounds like a working memory issue, (which is heavily linked to dyslexia no matter what the school say) as well as many other possibilities, ALL of which can be helped by putting the correct strategies in place. If private referral isn't an option, then speak to you GP, citing how badly it is affecting her mental health, and kick up holy hell with the school and local authority to get her referred. It sounds like because she is such a ray of sunshine, she's an 'easy' child to not meet the needs of as she isn't disruptive etc. It's disgraceful, you poor things what an awful time you've had. Good luck, will be thinking of you x

Cheerfulcharlie · 06/09/2023 18:02

Also look into auditory processing issues -( with her saying ‘pardon’ etc even though she can hear you )

DustyMaiden · 06/09/2023 18:02

I’m dyslexic, diagnosed at 27. It sounds like dyslexia to me.