Is school failing my child? I need some advice, I feel like a PITA mum...

[jaws5]

My son is 7, y3. School sent him for assessment over a year ago as teacher was convinced he had Aspergers: in class he was misbehaving, not paying attention, performing average on his NC levels but showing immense creativity, up and down with friendships... He had an iq test and scored very high on verbal and nonverbal ability (99.6/98.5), and scored 0 on a separate autism assessment. He displayed dyslexic traits that need more investigation. Both doctors said he's very bright but not aspergers, and it's the school's responsibility to provide for him. A year later he is more motivated as his teacher is a bit more unconventional, but his NC levels are still average. He seems to use his own methods, especially in maths, and it's all a bit up and down. He has been getting support to improve his handwriting, and it's better, but still no news on a dyslexia assessment despite me asking on several occasions. I tried to speak to the Head, he just said "he's obviously a really bright boy, but I think there's something else and I don't think it's dyslexia", before sending me to speak to the Stage leader who told me there's no funding for him as other children need it more. I was left quite lost: if Head thinks it's not dyslexia, why aren't we investigating to see what is it, if anything? This was last year, nothing has happened since, really. I don't know what to do, how to support my child. His teacher thinks that he will start ticking the boxes when he's decided he wants to be top of the class. I'm not sure he will. I worry that he's underperforming and this will create a pattern. Any advice or similar experiences, please!

Wow, I am totally gobsmacked at that update

Though from the POV of school box ticking, I can understand where some of it comes from - only the top 2 kids per year go on the G&T register, which is a joke in itself - I agree with moving schools, but tight budgets could mean without a diagnosis, you could hit similar problems elsewhere.

First off I would consider raising it as a complaint in writing & complain to Ofsted too - also look at the schools previous Ofsteds, you might find some clues in the most recent one to explain this attitude

I want to write a really long post here, but still strugling with migraine, so will maybe come back later.

But important points I did want to raise are..

Based on his GP noticing hypermobility, from things you write, I still wouldn't rule out EDSH as the source of his issues & I would advise not rushing into the Ed Phyc route as it could backfire if there is a physical reason for his issues as there is with our DD. If there is a real officially recognised disability, which EDSH, like AS is , then the school would be breaking the law by not meeting his needs properly.

If symptomatic, which from experience I can tell you isn't always obvious at this young age as its their normal, they don't know to complain & JHMS & EDSH are now recognised by the experts in the feild as the same condition, but it covers a wide spectrum of symptoms - his GP can't officially diagnose JHMS/EDSH, he will need to see a good EDS knowledgable paediatric rheumatologist - but you are in a good spot, as the top experts are all in London.

I've realised with DD that a lot of it was down to not asking the right questions - if she's suffering the "Postural Orthastatic Tachicardia" related Dysautonomia effects, she can be very litteral & only a direct question will get the right answer.

She spent years feeling demoralised by her handwriting skills, which were never below expected levels, just below her ability in everything else - but she never told me her hands hurt if she wrote a lot because she thought everyone's hands did. I felt like crap parent from hell when the OT asked her if her hands hurt if she wrote much - & she said yes & went on to explain how much.

POTS is a symptom of EDSH & a condition in its own right - it's very rare in kids' but it is common in Hypermobile kids & can be trigger - more made worse & more noticeable by an illness, leaving them deconditioned - looking back, in our DDs case this was pneumonia, which left her wiped out & nit recovering well from, later a bad ankle accident put her on crutches for 9 months - things deteriorated from there as she began to hit puberty & more injuries & constant stress of a school not meeting her needs & bullying.

We DID take her out, homeschooled for a few months & moved schools in the end & I regret above all else not doing it years sooner - her next primary were wonderful.

In short, at 7, DD was a bubbly, gregarious, exceptionally bright & mature kid, with a few quirks such as hating seams & labels in socks & being very empathetic to others, she could diagnose others in her class with SN faster than the school did - she was a fidget, & never slept as well as others & could struggle with tiredness as a result, but was very sporty, arty, all round G&T - bar handwriting

She had the same problem with reading that you describe - but I do too, it's not dyslexia, it's brain fog, I get overwhelmed by large chunks of type, it might as well be in Chinese, I thought for DD it was from poor sleep - so I taught her to do as I do & block out the text into manageable chunks with a bookmark or sheet of paper - she was soon reading well ahead of her year & now reads adult books - she was by 8/9

She had the same issue with maths, she works the answers out correctly in her head - she now now also admits the written workings out hurt her hand - in primary this was helped with a seat wedge, writing slope & special pens.

They do need to show the working out to get SATS marks, so it's good to get him to understand that it's important as not everyone is as clever as he is, so they need to see it written to understand (I always found this reverse Phyc stuff to work best with DD or set it as a challenge) - but in the long run that won't matter - he will be streamed according to ability in HS & will be working in a class of others like him, which means teaching us much mire at his level - DD is now loving this.

I hope that lot makes sense

I will sort out some useful links & post later

Thanks rockinghippy! Your poor DD, that sounds really difficult. I'll keep all that in mind, as we are waiting for a referral from GP about his hypermobility.

Yeah, she's not had the easiest of rides that's for sure, but she's very tough & smart so for the most part she copes well with it, though I can relate a lot to posts above with her not helping herself & kicking back at the moment for fear of standing out & getting picked on for it, resulting in meltdowns from over exhaustion etc most days when gets in from school.

Don't panic though, from everything I read, it is made worse by hormones, so escalates with puberty, which is definitely what's happened with DD, but girls are affected more so than boys & as he's like DD in not many sumptoms when very young, then he's unlikely to be badly affected by it, but EDSH could still be relevant - there's a strong like with both high IQ & also with HFA

I won't bombard you with links now, but I would recommend making sure that you get a referral to a good EDSH knowledgeable Rheumy, as it could save a lot of hassle in the long run & feel free to PM me for the links later

DD was finally diagnosed at 10 by a local Rheumy (we are not in London) the Rheumy was good with JHMS & organised OT & Physio, but wasn't so knowledgeable as far as the other linked conditions go, so as symptoms escalated (hormones) we had to go back

I then made sure that she got an appointment with a JHMS expert & saw Dr Ninis, she works NHS at Queen Mary's, though the appointment time was crazy, so we saw her privately at the Hypermobility Clinic at St John & Elizabethit was cheaper than your Ed Psyc ) (both clinics are in London) It was the best money I've spent, very thorough & informative & she joined all the dots for DD & organised further NHS referrals

She does give priority to kids hitting puberty though, so you might struggle, but her secretary is very helpful & can probably suggest someone else, or shout, I can try & find out for you.

In the mean time I would suggest getting him pens & pencil grips & trying a few things that help DD, which I will add links too later

I recommend STABILO EASYgel pens www.amazon.co.uk/gp/product/B0036TGAVA

The triangular pencil grips are as good as any.

I am guessing that the school will probably happily provide a desk slope as they will probably have a supply in a cupboard somewhere. They are shockingly expensive I thought given they are just some shaped plastic.

Your DS sounds similar to mine, also 7, described at parents evenings as a "gifted eccentric", we are partway thought the process of getting him assessed for dyspraxia but there are definitely other sensory processing disorder related issues.
The more I read, the more common that asynchronous development or dual/ multiple exceptionality seem to be, I am hugely reassured that many children have found secondary school a better experience for them as I have long suspected that this will be the case for him. Unfortunately he has 4.5 years of infant and junior to get through first!
For my DS, his reading and maths, vocabulary and reasoning are extremely strong but his handwriting and written work generally (even if typed) are poor, he wants to get it done asap so writes as little as possible.

Your headteacher sounds like a dick, keep records of everything, and don't be deterred - as he is hoping you will be, from being your son's advocate. I am also thinking of asking for an EdPsych appointment but suspect it'll be difficult to get even though his infant school is outstanding and has great provision for SEN, and G&T, his issues are relatively mild but he is mine and I want the best for him.

Good luck

That's the same pen that DD uses Var :)

these are good pencils & some people prefer them

If it does turn out he is in any pain, the weve found Turmeric taken as golden milk to be a big help & it is natural & safe even at this age.

recipe here

More info on Turmeric benefits here

It needs to be taken regularly to be affective

We've found chamomile infusion to be better than the sleep meds they gave DD - this is the proper herb steeped in boiled water for 5 minutes & add a bit if honey to taste, rather than the tea you get everywhere

Yes, the HT is a prat who hasn't been on G&T training. There is an endless list of famous scientists, inventors, artists and writers who had dyslexia and other SEN and who didn't shine school. He's clearly fallen into the "high achiever" trap: www.bertiekingore.com/high-gt-create.htm. I suspect he is deeply entrenched in his beliefs and won't be persuaded otherwise. My DS's HT was exactly the same yet the G&T co-ordinator picked up DS's verbal skills on his secondary school induction day. HT just saw him as a PITA who couldn't write properly. Secondary school is about so much more than the obsessions of Junior - the 3 Rs. There's plenty of opportunity to shine in other subjects. Yes to doing things outside of school. Have a chat with Potential Plus. I would ignore the HT but it might be worth a fight if the G&T group are doing exciting things that would benefit your DS. They may just be names on a list but if they are going off on debates or doing science experiments or problem solving stuff then I might be down there fighting. Potential Plus might back you up.

Something I didn't know before (taken from the University of Edge Hill):

Every Child Counts is a partnership between Edge Hill University and the Department for Education. It aims to enable the lowest attaining children in Years 1 to 6 and beyond (ages 6 - 13) in England to make greater progress towards expected levels of attainment in mathematics.

So, its not for the more able after all. I'm actually shocked that even the department of education don't think that more able children need to be looked after too.

Sorry Jaws5 that I didn't reply earlier but scrolling through, there is lots of good advice on the thread. I completely agree that at secondary school he is likely to shine as his creative teachers will spot his potential. In primary it is more about the 3Rs. Teachers have wide subject knowledge but not the same specialism as secondary.
I'm sorry your HT was unhelpful. From your post his overall tone was pretty negative. It felt like he was trying to put you in your place! Schools should be more positive about those that don't fit the mould! It's my personal gripe.
Anyway take heart that your son has you behind him and you have a lot more information since starting this thread.

RockinHippy please excuse my failing mom-brain if we've had this conversation before, but your dd's issues sound like mitochondrial disease/dysfunction (which is what my ds has). There are some pretty good treatments (high doses of several supplements needed by the mitochondria) these days. I'd be happy to send you more information, if you are interested. ...sorry for the hijack. I am just running out the door, but will come back with more support for jaws5 soon....sorry for the awful meeting. Having been through many of those myself, I completely empathize. But it does get better!!!!

Rockin

I don't seem to be able to find info on how much turmeric to use.
Do you know any guidelines/ recommended amounts please?
To complicate matters looking for adults as well as children.

Thanks again! It's really encouraging to hear that's it's better at secondary school. The HT's tone was dismissive and made me feel like a PITA, pushy mum! All he cares about is final SATS results, the self esteem of the child is not important.... I'll look at that link gardenfeature !

Thanks Sofia I'm not sure if we've spoke of Mitochondria Disease before or not, though I have come across it over the years, but DD is diagnosed with Ehlers Danlos Hypermobility, with POTs, Dysautonomia etc as symptoms of that & it definitely fits her to a tee

morethan if you look in the "recipe here" link the quantity for golden Mik is in there, but you can have as much as you like, but at least one mug a day

For capsules, DD takes one a day,I take 2 but more if ill, (flu etc etc) but you have to make sure you have something with black pepper with it as that makes the turmeric more effective

My cousin started taking it for arthritis & she added in coconut oil too, which she tells made a big difference but took 2 weeks before it really properly worked

HTH

jaws the cynic in me would question the reasoning behind that - if your sons school records don't show his talents, then the school can't get into trouble for failing him at SATs level if he doesn't do well enough - we hit similar problems with DD in final SATs year, though a bit more complex - looking at Ofsteds for new schools, I came across the most recent one for this primary - they had a slap on the wrist for failing the brighter kids at SATs level - what had been a very confusing & stressful time, suddenly made sense & I did enjoy seeing that DDs new school performed far better & DD did extremely well, despite being very ill all through it, but refusing to go home - thanks to her previous school making her fear the SATs so much, that she was actually rushed to hospital at the end of it

Sorry morethan I forgot to add - you can't really overdose on it, you can just cook with it (curry for example) or drink as much as the golden milk as you like - my cursing takes it 3 times a day

You can also buy a capsule filling kit & empty capsules on Amazon, in the long run its cheaper to make your own & you can add black pepper to the capsules - I've ordered one

OMG rockinghippy, you and your DD have gone through a lot!
I'll look at what Ofsted have to say about provision for more able children in our school...

RockinHippy all of those symptoms are also common in mitochondrial dysfunction/disease and generally a sign of some sort of mitochondrial dysfunction. My ds is hypermobile, has POTS and dysautonomia along with migraines and cyclical vomiting. His symptoms are considered mild to moderate, although at puberty bipolar appeared which is also common in mito kids. We had extensive genetic testing done (as part of a clinical trial) and have found that he has mutations in his calcium channels that bring calcium in to the cells which is then used by the mitochondria to make energy for the body. They say he has "leaky" calcium channels but they don't know exactly how that deficiency operates biochemically. To help boost the production of his mitochondria he takes high doses of L-Carnitine and CoQ10 along with a slew of other supplements and that has really helped his symptoms a lot. It has also been helpful to get the diagnosis of mitochondrial disease so that when ds does have symptoms we are treating the cause (mito dysfunction) rather than the symptom (migraine, fatigue, dysautonomia etc.). You might want to look at these two websites: Mitoaction and UMDF. The former has a fair amount of information about the supplements and the dosages and the latter does a good job of describing mitochondrial diseases.

jaws5 my advice would be to not waste your money and energy battling the school at this age. The better options are 1)pull your ds out now and homeschool him or get him into an alternative learning environment that can support his needs or 2) leave him there for another year or two without doing battle and just get what you can without too much pain while you put your energy into figuring out what the alternatives are AND what your ds' exact needs are. I did the latter with both my dd and ds and it was extremely successful for dd and so-so for ds. If I had to do it again, I would probably have not changed what I did for dd, but switched to alternative 1 for ds.

Thanks for taking the time & trouble to write that Sofia but I'm guessing you are in the US as its just not a condition that's really properly recognised medically here in the UK & I've battled enough to get this far - I did look into MD & read a lot on it years ago when I was looking for answers to my own health problems as I didn't agree with the diagnosis I then had. It took DDs diagnosis for me to be correctly diagnosed & my DM too. DH is also asymptomatic Marfans, so EDS genes agogo - I've read the world on EDS & it fits us to a tee, answers a medical mystery going back several generations that we know of on my side & just feels right, if you get what I mean, but thank you anyway.

It's funny jaws we just get on with it, so I don't think of it that way until I get that sort of reaction, but that's just the tip of the iceberg, so a good coping mechanism I guess.

I think from our experience, & your HTs attitude, I would move schools or HE too - HE petrified me, but turned out to be easy as an hours 1-1 tuition is worth a 8 hours of school, especially with the disruptions DD was dealing with, I took DD out of school at a crucial point in her education, figuring I had no choice as she was falling apart under awful belittling teaching methods, that & none stop injuries we now know we're purely environmental. DD didn't suffer at all from the months she missed, it did her good.

DDs old HT would never have been so brutally dismissive as yours, I actually liked her & I had fought & taken on the LA over an other issue that badly affected DD & won in earlier years & was bull headed over their poor handling of bullying, again making them listen & act in DS best interests, thinking fighting & winning was a better life lesson that giving up without a good fight - but there was always something else & it was only after moving her to another school that I fully realised just how bad it was.

With hindsight I really regret not moving her at the first hurdle, she loved the school there were some great staff members, but lots going on behind the scenes with the LA & the HT was weak in some areas, they also used DD to mentor others too often as she was way ahead, I had no problem with this as DD enjoyed it, but the DCs involved were often new to the school, placed there by the LA & deeply troubled, on a few occasions leading to obsessive behaviour & major stress when DD tried to back off.

That was with a HT who appeared to listen. Faced with what you've just had at your meeting, IMHO it doesn't bode well , yes you can force his hand, the law is on your side & you will get great advice on here as I did BUT if it's the kind if school that it sounds to be, you, like me might just be fighting one battle after another - you stop caring about looking like a PITA - but it takes its toll & you don't need it, a good school will look at ways to engage your DS, regardless of diagnosis - even my DDs old school did that with a couple of troublemakers in her class who were clearly very bright & acting up out of boredome, they git there in the end too

If you get a diagnosis, you might find things change as they will have to allow for that, but that in itself can be a battle - you need to decide if that's what's best fir both you, let him have a say too.

rockinhippy no worries. I wasn't suggesting by the way that your dd doesn't have eds, but rather that eds is a type of md. I only got my ds diagnosed because I'm tenacious and my father happens to be a very famous scientist who very coincidentally works on mitochondria and nutrition. His colleague did the initial genetic testing for free for us that none of the dr's would do and an email from him got us in the door to see one of the 3 pediatric geneticists in the USA treating mito in mild/moderate kids (he had a 4 year waiting list normally). I can completely empathize with your journey to get your dd diagnosed. Even with all my resources, my ds wasn't diagnosed until he was 10 and that was after years of increasingly severe illnesses.

I did understand that's what you meant Sofia & I do understand the mechanics of the conditions but I think we will just have to agree to disagree.
I'm really glad you were in a position to get diagnosis & help for your DS though, it's hard enough with a recognised rare condition, a new area of medicine such as MD can't be easy at all, but you got there in the end which can't be easy at all. Kudos to you

RockinHippy again, no worries....didn't actually realize we were disagreeing...but there you go.

It's just a turn of phrase Sofia, I perhaps should have worded myself better, but ill at the moment, so not at my best, apologies for any offence, I just meant I'm comfortable with the diagnosis we have & having seen the top Drs in the field privately, I'm confident MD would have come up if that was a cause of EDSH

I really agree with those who say whatever you do, don't put your energies into revolutionising the way that the current school operates.

I say this because its what I wish I had done with hindsight, not what I did do.

At the moment, I am waiting for an email from admissions telling me which secondary school DS2 has got. He's my youngest. Like anyone else who has been through this already, what happens next is that something clicks in your mind and you've already mentally left the primary school even though you still have to drop your child off at the gates for the next few months.

So, its the start of the end of an era for me. Soon, I won't have a primary school age child any more. I'll be rid of class teachers (both the good and the bad ones) and the HT. Unfortunately, my memories of my sons' time at primary school aren't going to be the cute, warm stuff. What it has meant to me is a series of frustrations, worry and meetings ranging from fruitless cajoling, endless meaningless platitudes, unfulfilled promises and, occasionally, barely concealed hostility. On one infamous occasion, at my son's first primary school, the hostility was out in the open.

From experience, secondary school is better because the work is more differentiated by ability, the teachers know their subjects and even if your child gets a teacher who think like the OP's HT, well its probably only for three hours per fortnight.

HE would not have worked for me because I could not have provided the social opportunities that my DSs need. I did do it for KS1 though and it is easy.

var123 ....I so agree. My overarching memories of primary are incidents like screaming at my dd's 1st grade teacher that my dd was not bad at math and that there is no evidence that timing math tests improves automaticity and trying to convince my ds' 5th grade teacher that he was not lazy and that the cause of his 6 week long migraine was not my lenient ways and telling the principal that it was not ok for the 5th grade teacher to refer to my ds as "the village idiot" and that I wasn't making it up as I had heard it from the 3 parents who had gone out of their way to call me and tell me what the teacher was doing to my child as ds was too scared to tell me. I truly wish I had put that energy into something more positive and productive.

RockinHippy no offense taken. I hope you feel better. It really sucks having to take care of a child with a chronic illness and then when they are having a good day, it's the day that your body decides to get sick. I am very hopeful that there will be good treatments for both our dc's diseases soon enough to make a real difference in their lives.

var123 you're right, I'm not going to jeopardize my son's experience at primary school. It just surprises me that a Head can be ignorant of an issue that clearly exists in schools. It also upsets me that he won't take part in any g&t activities when that kind of sideway extension is just what he needs. It his "average" levels are due to his dyslexia - "mild dyslexia" according to Head - he's being discriminated against, as verbally his ideas and love of science are exceptional (as described in last year's final report). Very sad.