Thursday, 15 October 2009

Painting by numbers...

We're not here much these days. The triangle book is now 3 triangle books, the first of which is published next month. Hectic is a good catch-all.

But mostly we've been battling the system.

In a nut shell, Master Melancholy is a lovely, bright, thoughtful boy who has great capacity for learning languages and seeing the big picture and still can't tie his shoelaces at 14.

Or use a tin opener.
Or a cheese grater.
Or catch a ball.
Or write on the shopping list legibly.
Or write more than 2 paragraphs of handwriting in half an hour.
Or consistently remember, between putting food on his fork and it reaching his mouth, that he is engaged in the task of eating.
Or appropriately choose his own wardrobe if we're going on a walk.
Or tolerate more than a few minutes in a supermarket without becoming visibly distressed (though he shuts down rather than making a fuss).

As ridiculous as it may sound, until the beginning of this year, Ms M and I didn't really know what dyspraxia was. These days it's known as Developmental Co-ordination Disorder/Difficulty.

Master M received an instant diagnosis of dyspraxia (it's obvious once you know...) from the incredibly helpful and lovely paediatrician and was duly referred to Occupational Therapist (OT) for assessment / therapy.

We arrived at the OT and were greeted with the statement that the OT prefers to call it 'Developmental Co-ordination Difference'.

We're all for positive labelling and not projecting negative stereotypes onto people who are different. And if Master M was being home educated, or we had the money to send him to the gorgeous, forward thinking private school down the road, and pay for private occupational therapy to help him gain independence, his neurological set up would genuinely amount to difference... but in the context of being a pupil at an old fashioned grammar school, and only having access to the NHS, it's a difficulty at best and a genuine disability at exam times.

The OT put Master M through his paces with a battery of tests and found that his fine motor skills are in the 2nd Centile. Only one child in 100 has more trouble than him with fiddly things and pencil control. He also struggled with aiming / catching, but managed to fluke a hit which he later described as 'missing in the same direction as the target'. Then on to gross motor skills, which Master M has worked hard on over the years. He did some excellent hopping. It lacked style but he hit all the markers.

Then, amazingly, she averaged the scores, and the hopping-skills lifted Master M's two 'red zone' scores into the 'amber zone'.

'See!' she exclaimed cheerfully 'You're not that bad really! We see other children who are much worse than you!'

She seemed puzzled by our lack of relief.

Incredibly, because he can hop, and despite the fact that his fine motor control is non-existant, he is not eligible for a service from the NHS. He's in the amber zone you see. Officially this places him 'at risk of a movement difficulty' and not actually suffering from one.

So - that sorts it out. We'll just write to the exam boards and ask if they can allow him to demonstrate his hopping in lieu of being able to produce an essay of the required length. I'm sure they'll jump at the suggestion!

Since then, we've done something we never thought we'd find ourselves doing, and gone private. We found an amazing place called Therapy in Praxis in York, who hear stories like ours all the time. We sat in the waiting room and heard parents talking about the school accepting that their child had serious problems (the kids we saw were gorgeous but clearly affected by something) but that the waiting list for therapy was 2 years. For a five year old. Who will be seven before he receives any help... *sigh*

Anyway - at Therapy in Praxis, Master M had a full day integrated assessment, including working with an Ed Psych and a speech and language specialist. It cost a fortune, but it was completely worth it. He felt understood. He felt validated. He is not crazy, or lazy (and I'm ashamed to say that at times I have wondered whether he could try harder) - he is disabled and the things he finds hard really are hard for him. Some are actually impossible using conventional tools.

We've since seen the paediatrician again, who praised our decision to go private, lamenting the lack of multi-disciplinary childrens medicine today. She is fantastic, and has confirmed that everything the private assessment turned up is real and significant and consistent with her observations of Master M. We'd been anxious that she might be sceptical, but she was quite the opposite.

It turns out that Master M doesn't 'just' have dyspraxia, he also has:
  • Clinically low muscle tone (caused in his brain so exercise doesn't fix it - basically he's floppy)
  • Hypermobility of his hands (he can't form a stable grip at all)
  • An impaired auditory loop (the 'talking to ourselves' that we use for short-term memory)
  • Sensory integration disorder (he can't make use of the information from his senses properly)
  • Auditory problems (he doesn't filter to favour voice frequencies, has super-human hearing!)
  • Vestibular problems (if he closes his eyes he has no balance - no wonder he hates the dark)

on top of all this he's also still dealing with the cleft palate he's had since birth, and consequent speech difficulties. Most importantly for his GCSEs, with his 2nd centile fine motor skills, any motor output requires complete concentration: he can write or think but not at the same time.

Together with his cleft palate, the difficulties he has can all be caused by a chromosomal partial deletion which he has now been tested for. We won't know the results for 3 months. Had he been born in the last 10 years he would have been tested at birth for it - one in 10 children with cleft palate have it, actually more like 1 in 5 or 6 once you discount causes such as drug use during pregnancy and other, more serious syndromes which Master M definitely doesn't have. This '22q11.2 deletion' syndrome can also include heart, kidney and immune problems, which may not be apparent until you look for them. Who would know if he only had one kidney?

Amazingly, the NHS don't appear to be retrospectively testing children with cleft palate who were born before we had the test available. "You were born before 1999 - so you can't have that, because we didn't know about it then... " seems to be the logic.

Ultimately we're lucky to have a paediatrician who is pulling out the stops to work the system for Master M. She sees the gap between his verbal IQ (top 5%) and his motor performance (bottom 2%) as a more sensible measure of his difficulty than simply averaging his scores across the board!

She's working out a way for him to have therapy from the autistic spectrum team - Sensory integration problems overlap with aspergers. She's also ensuring that at school he can use a laptop (doesn't require fine motor skills oddly!) and that they understand that they have a disabled child in their care who just happens to have been bright and hard working enough not to have received a diagnosis previously.

I had been under the illusion that we had great child health care in the UK. Gawd love the NHS and all that. I think I did a lot of filming of the glamourous end - open heart surgery and pioneering treatments - when I worked in TV.

I appreciate that health care will always be about numbers to an extent - cost-benefit analysis and so on. But we need to put a lot more thought into the way numbers are used to make decisions in health care, particularly in child health care, where the decisions are so life changing. There is no meaningful average of hopping and handwriting, and the fact that other kids, with parents less able to fight for them, are also not getting a service because of this kind of misuse of mathematics is depressing.

Excel spreadsheets are not professionally trained and haven't taken the hippocratic oath.

9 comments:

B said...

Sounds awful. I'm glad you're finally getting somewhere.

You would hope that even if they average the scores in most circumstances, that if he was as low as the second centile that would leave him in the category of 'needing support'. I guess I'm naive like that... :(

Hullaballoo said...

What a relief to get the support you need and yes it's well worth paying for it. Master M is such a lovely boy, he deserves all the support he can get. And yes, he is lucky to have excellent, educated, feisty parents who fight for him. Go Chasing Sheep Family!

Queenie said...

Really sorry to hear about this - but glad you're making progress. I expect you already know about this http://news.bbc.co.uk/1/hi/health/8308527.stm but just in case you don't...

Stray said...

B - thanks for saying hello :) Indeed - it would seem sensible that any very low score would mean there's a problem... but the spreadsheet likes to do averages!

Hullaballoo - Hey there! He is very lovely isn't he? We have indeed been using our feisty side - sometimes my trait of being a bit like a yorkshire terrier has its upside!

Queenie - We hadn't seen that article! It looks really interesting. I think we'll follow it up.

We've been told (by the lovely paed, who also has dyspraxia herself) that at this point it would be better to find work-arounds than to try to develop skills. If Master M did a LOT of work he might be able to lift his fine motor skills from absolutely useless to mostly completely useless... and there's a possibility that there would be no improvement at all.

I guess maybe with younger children it makes more difference. Certainly the work he did on his balance has paid off. But with the hypermobility and the low muscle tone as well... it's just unlikely that he'll ever be able to form a stable grip on a tool, let alone use that tool with precision. I have occasionally had to make use of a stanley knife or a screwdriver with a broken handle and a bit of a wobble - it's impossible!

We're focussed on alternative strategies instead for now - gadgets for opening tins and chopping things, and a laptop at school instead of pen and paper.

The really interesting thing about that study is that it provides a proper chance to see whether exercises do make a difference. Kids have never done them consistently enough before for there to be very good data on that!

Sx

B said...

It's always nice to hear you're well, even if you're dealing with problems.

... erm, ARE you all well apart from that?!

B said...

ps - i hope it goes without saying that i hope so :)

sheepish said...

It's very sad that you have to be pretty intelligent people in order to get the help you need. A lot of kids out there will not be receiving the help they need. Glad you have made progress though, now you know more about the sort of assistance Master M needs. Good luck.

uphilldowndale said...

Fantastic news that you have been able to break through the 'barrier of averages'. We took a similar route with my sons dyslexia assessment, it cost a lot of money but it has paid for its self many times over. The use of a laptop will be a boon (my son is being taught to touch type, not shire if that is a possibility for Master M) I was 42 when I had my own dyslexia assessment, it was a huge help to me to start to understand why, parts of my brain can fly and others can't even get off the ground! Looking to the future, I've noticed there is a lot more help with equipment and support at higher education level than there is in secondary school. Good Luck, keep on being feisty!

uphilldowndale said...

Sure, not shire!!!
LOL, you see how it is!