I think my dd needs a specialist assessment or I am being ‘that’ mum?

[Zofloramummy]

My dd is 9 years old. She is a lovely, kind, artistic, musical child. She loves maths and science and finding out how things work. She has a close knit bunch of friends and an active imagination.

I’ve been worried about her reading and writing for a while and have discussed this with her teachers and they’ve always said she is within the parameters of ‘normal’.

However she has a reading age of 7, can’t tell the time on a clock face, can’t spell high frequency words, she writes letters and numbers backwards, is disorganised and a dreamer. She struggles to get to sleep at night. She still wets the bed regularly. She can’t tie shoelaces. She has a very restricted diet and won’t try new foods. However she can become quite involved in intricate activities (art and crafts) and can problem solve really well.

She doesn’t like routine changes and likes to plan everything and have a schedule! As soon as she gets home she takes off all her clothes.

I suspect she may have dyslexia and possibly adhd. I’ve asked the school for an assessment. Am I being the over anxious single parent or am I right to be concerned that she is struggling without the correct support?

She has been selected for the last 3 years to go into small groups for additional teaching support with basic skills, but the school don’t seem at all concerned that there maybe an underlying issue.

Anyone in a similar position?

She sounds very much like my eldest (boy) at that age. I too got fobbed off when I raised concerns at primary school. He was just "a bit all over the place" and "might do better if you didn't work full time and could help more with his reading."

Secondary school was much more supportive and finally referred to CAMHS to assess for ASD and ADHD. It took over 2 years to get a diagnosis of (high functioning) ASD, age 13. He then had to start again on the ADHD pathway - potentially another two years. We went private once we realised that. I had no idea why he wasn't on both pathways at once but hindsight is a wonderful thing - had I had my time over again I'd have gone private for both pathways much, much earlier.

He got a diagnosis of ADHD from The Priory earlier this year. Now on meds which have made a huge positive difference and might mean he actually has a chance of getting some GCSEs. His social skills have improved too. He will always have poorer than average executive functions but the ability (with meds) to focus has unlocked so much more potential.

Good luck with your daughter!

Everything you say about your DD sounds very similar to my 9yoDS. We had him assessed privately a couple of years ago and he had dyslexia. That enabled us to get more support through the school SENCO. Not loads, just an extra session a week and some adjustment with spellings, more understanding really. We've also got him a tutor for an hour a week who works with dyslexic kids. It really helps a lot, but if we'd left it to the school, even though it's a good school, it might never have got diagnosed. They're cut to the bone and even more so with Covid's added pressures. If at all possible, take the lead yourself. We're in London so there were lots of easily google-able options for professional assessors and tutors, but I'm sure they're around in every borough as so many DC need support for it.

[quote Zofloramummy]@Zoflorabore ha ha! Yes the complete inhibition, that’s a challenge. My dd won’t wear knickers unless it’s for school. On other days (when she is dressed) I put cycling shorts on her, otherwise she’d merrily flash anyone.

@ittakes2 having looked a bit more into the reflexes dd really fits the spinal galant reflex profile. Retained bed wetting, distractibility, dislike of waist bands. Thanks that’s been really helpful.[/quote]
A lot of what you describe also sounds like autism with sensory issues..

An assessment would be the best way to go, and try not to google too much.

Yours too, @Zoflorabore!

ASD is often mistaken for ADHD in girls, as they both present differently in girl than they do in boys.

Don’t pay for a private assessment. It might give you some answers but it will hold no weight with the LEA if further support is required. They are often disregarded by schools too and yours doesn’t sound particularly open to the idea to start with.

Take her to your GP and try to get a referral to your Child Development Centre (could be called something different in your area) or CAMHs. Make sure you take a list of all your concerns so you don’t forget anything.

As someone who spent DS's entire primary school experience being fobbed off as "He's fine, he just doesn't try hard enough" and now, ney diagnosed as dyslexic and now facing a lengthy evaluation for ADHD and ASD in Year 8, that if we're lucky might be resolved by the time GCSEs roll around, yes, BE THAT PARENT. If I could turn back the clock, I would have made more noise!!! And sooner!!

@LadyCatStark

Don’t pay for a private assessment. It might give you some answers but it will hold no weight with the LEA if further support is required. They are often disregarded by schools too and yours doesn’t sound particularly open to the idea to start with.

Take her to your GP and try to get a referral to your Child Development Centre (could be called something different in your area) or CAMHs. Make sure you take a list of all your concerns so you don’t forget anything.

That is definetely not true! It will hold weight with the LA and show her needs. OP isn’t sure what the needs are anyway and school obviously don’t do number one would be someone who knows their stuff assessing her. What the LA won’t do (unfortunately) is assess a child who the school say is fine without the OP putting up a fight or having her own evidence.

I naively thought that schools were proactive in assessing children with AN. I will never understand why some schools don’t work closely with parents, after all we know our children best!

Various points are now ringing alarm bells with my eldest who at 9 Y4, still can’t tell the time, do her shoe laces or tell her left from right, is incredibly bright in English/reading yet behind in Maths, very creative but completely scatty and disorganised.

Thanks for starting this thread as it’s provided so many pointers.

Most definitely get her assessed
I was checked for absence seizures as a child but ADHD wasn't something that was considered in the 80s in the UK
My daughter who sounds very similar to yours was diagnosed age 6 and it was a lightbulb moment. I was diagnosed at the same time and I cried with relief that I finally had answers.
We are both on medication and it has helped enormously my daughter has gone from reading reception age books to Harry Potter at the age of 9.

Be prepared for a fight as sadly adhd in schools is woefully under investigated and under diagnosed.
If the school says no please ask your GP
It may come to nothing or it may provide your daughter with the vital support she needs!

Ps I still struggle with the time!

A pp mentioned a getting ready list, but maybe use picture cards / storyline format so it’s more easily accessible to her, especially if she can’t tell the time and is a visual learner, might relieve some of the stress.

She’s lucky to have a Mum willing to be ‘that Mum’ and fight her corner. Keep at it, you’ll manage to get her the help she needs, even though you’ll likely have to do a lot of it yourself in the current economic climate, not to mention the mess covid has made of even the most usually organised organisations!

@ittakes2

Please google infant reflexes not going dormant as also can present as what you describe.

@ittakes2, I've googled it but not finding much information, only a couple of developmental programmes with no indication of cost etc (which probably means they are very expensive). Have you got any pointers for what to do/what these programmes do? I'm thinking of trying some kids yoga with my DD, also some sensory things and crafting. Any other ideas? She is 5.

DH and I have always thought something is going on with our DD, she seems to have sensory issues, was a bit delayed with walking (but within the range), language was delayed until 12 months then she spoke lots but we were worried some of it was parroting. She is hyper, talks and sings constantly (our patience is worn so thin with it). She is never cold, even when it is freezing and seems less mature than her peers. She doesn't listen to us, seems in another world sometimes, very imaginative. We have had another baby since who seems more of a typical baby (if that's the right term) and it's made us worry even more. I'm suspecting inattentive ADHD, sensory processing disorder or maybe ASD. I read the checklist for inattentive ADHD in girls and she ticked nearly every box. School don't have any concerns, it sounds like they aren't great on picking up on these things. There's always been something, but we've never known what. She didn't smile much as a baby, didn't laugh much and never copied us. Also a little late with pointing and gestures.

@AutumnleavesturntoGold Are reversals getting things mixed up? Like hot and cold? My DD does that too.

She also seems to mask and needs quiet time after school to decompress. She wants to watch TV or play by herself for ages when she gets in, then gets hyper and wants lots of attention after dinner and at bedroom, just when the rest of us are winding down for the day.

She doesn't do it at school (or when at nursery) so I think we will really struggle to get any support or assessments. It's the typical of letting it all out at home.

Also she hates noise but is incredibly noisy herself and doesn't like transitions. She woke up screaming and inconsolable from her naps and took ages to calm down. As a baby she comfort fed a lot and always needed soothing.

Sorry for the essay and multiple messages! @Zofloramummy I feel the same as you. There is something going and it's worth checking. You aren't that mum. You know when something isn't right.

Sounds exactly like my DD (10) recently diagnosed with dyslexia secondary to language processing disorder. She wasn’t a bed-wetter but was/is a Sunday night crier.
Your teachers say your DD is so engrossed with her work she doesn’t hear what’s going on....OR....she may just not understand what is being said! So common (10% of population) and so so stressful...many of these children hate school and do worse and worse each year unless recognised.
Definitely have her assessed by Ed Psych, Speech and Language, OT and Audiology.
You’ll have to pay for these assessments yourself most likely so set aside about £1000 over the next year or so.
Guided by the above professionals, depending on what is found, you’ll also have to do a lot of your own research and mostly help her yourself at home. School can do a bit - especially if you provide written proof from specialists that it’s not all in your head. But they have other children to teach too and they have their own families to worry about so don’t expect too much.
Not meaning to sound harsh but that’s life. I always feel so sad for the many children who do not have mums like you.
With support and an understanding of what exactly is wrong and what she needs to do to get around it and “learn differently” your daughter should start to feel better about herself and school.
Best of luck!

Sounds exactly like my friend’s daughter - she was also masking. Private assessment & adjustments at school and she is doing really well. Learning to drive and applying for uni next year. Trust your instinct - you know your daughter best. Good luck!

I have just had time to check the thread and I’m so overwhelmed and reassured by the responses. Every parent wants their child to reach their potential, my dd is a lovely girl but what I’m doing now isn’t helping. It’s becoming a conflict between us and I don’t want home to be stressful.

There were some really helpful tips and techniques posted and a lot of advice that shows me I am right, she does need assessing. I think she is high level but with her food aversions and some of her behaviours I think she may have some sensory processing issues. I was talking to a colleague today who was diagnosed at 22 with dyslexia and she recognised similarities with my dd.

I will push with the school and ask to speak to the senco. The hardest thing I think is that she appears so ‘normal’ and is socially fine. It’s so much easier to see an issue with the children who present with more obvious needs.

Again thank you all.

OP taking all of the issues as a whole I'd be surprised if DD was completely neurotypical. If you can afford a private assessment it might be worthwhile. Even if you have to wait a while for an assessment I would run with the assumption that she is dyslexic/has ADHD/ASD and look up advice to see if any of it might be helpful (if she turns out to be neurotypical no harm will be done).

Good luck, I hope you get some answers and support.

I've found some YouTube videos on integrating primitive reflexes, search for "primitive reflex integration". I'm going to try them and see if it makes any difference.

I would go to see the GP; (probably initially without her) and discuss the wetting, anxiety, how much it eased in lockdown etc.
I would also suggest putting in a request to be assessed for an EHCP with the LA - don't just ask the school about it, but put it in yourself.

Primary schools can be "too nice" and miss various SEN/SNs. Frequently teachers don't seem to pass on information - or the new teacher doesn't want to "pre-judge" based on the old teacher's assessment and things get missed. This is especially true in Primary.
And then there is the money thing, schools are supposed to provide the first £6000 of funding for the extra support for each child out of their existing budget, this can be hard for them (unless they have a financial whizz as a SENCO).

You as the parent see the most rounded picture.
A class teacher may see academics, but won't see sensory stuff.
No one at school will see collapses when she gets home.

Make a bulleted list of all the issues, grouped by 'topic'.
Have a sit down and a drink of some sorts to recover from how 'bad' it looks when all collated.
Then contact school & GP and whoever else asking for referral.

I’ve just had a meeting with the headteacher. She has identified sensory issues herself from the very full picture I have painted of dd. She is going to speak to the class teacher and the SENCO. She has also directed me to the ADHD helpline currently being run by the LA ADHD specialist. She really made me feel listened to, I’m hopeful that they will look at the whole picture and not just what they see in class.

On the way home I asked my dd if she had a nice day. Instant frown and “you know I don’t like talking about school”. My mistake, I shouldn’t have asked.

I’ve said to the headteacher that my attempts to help at home are resulting in conflict and I need new strategies. She did say she has some year 6 students at reading level 11, but I also mentioned the transposing letters, backwards number writing, skipping words or changing high frequency words when reading. They are going to try some coloured overlays to see if that helps.

At least I’m now feeling listened to, but I want to see some actions now.

It might be anxiety.
You're right to be concerned there are red flags.
It is unfortunate for young girls they are often overlooked with these things.
I'd start with an educational psychology assessment or OT which are the cheapest if going private they'll be able to identify if your DD needs a further assessment if she has processing issues.
My DD is a very good reader on the spectrum she struggles massively with processing taking notes from a board or book to page.
Her handwriting is behind she starts letter formation incorrectly.
Good luck I hope it helps her out.