Sunday, September 13, 2009

Another couple of dragons slain

It's not as if there has been an absence of important events either... its just been shoddy blogging I'm afraid.

So, a brief precis of the spring/summer...

While on a ski tow back in April we received a phone call telling us that we'd just got the home of our dreams. That was pretty momentous and not without tension - the Scottish system of closing dates and sealed bids is enough to send anyone to the edge. I could tell you about the flat... but it is so splendid in every way that you'd start to dislike us and we wouldn't want that now would we?

Suffice it to say that I AM NEVER MOVING AGAIN. This is it. For good.

So the spring was taken up with preparation for that and Tom experienced many of the insecurities associated with such events. He seemed to take the move up from Nottingham last year in his stride but this spring Tom suffered a great deal with separation anxiety. School drop off became a trial for all of us but, with great help from his Steiner kindy teacher, he has made his way through it and is now quite the stoic.

The other key developments have been about Tom's physical achievements. Absence of cochlear implants in the pool - alongside the whole separation thing - have made for slow progress with swimming but Nicky has persevered. In weekly lessons, one-on-one with Edinburgh City special needs staff, Tom has developed in confidence to the extent that, by the summer break, he had just started doggy paddling.

As far as I can make out, though, Tom didn't really get it. What was the appeal of getting in a big cold bath for 30 minutes with a stranger you had difficulty communicating with? He never heard all the other children laughing and splashing around; incentives were few and far between. Luckily his desire for a blue slushy remained great enough to get him through to summer.

Then came the family vacation to France and the killer combination of hot weather and friends-with-pools. All Tom needed was a long sunny afternoon with Amelia and a pool full of inflatable toys. The transition from nervous paddler to fish-boy was complete - and greatly enhanced by daily access to another friend's pool for the rest of the holiday.

Good times.

And today another bogeyman was slain. Following the meningitis I developed a fairly lengthy mental list of shit that I feared was lying in wait for Tom. Some of the items on this list were hugely irrational - I had a recurring nightmare that he would never increase in height that hung around for a few months (I suspect a psychologist would have fun with this one; something about being locked in the worst of moments). Others, though, weren't so far fetched and based more firmly in medical possibility.

Tom's balance was pretty messed up after the illness and, while he has made enormous progress, he still can't hop and has a fairly spread gait and flat feet as he compensates for his core instability. I think he has a sense of this and is generally reluctant to test himself in the way most five year old boys might. We nudge away at this as gently as we can and today, given that we are enjoying an atypically sunny Scottish weekend, we raised the possibility of him trying his bicycle without stabilisers in the park across the road. I made all the appropriate assurances about running with him, holding the back of his seat and he deigned to give it a go.

Anyway, you can probably guess the rest. After a couple of runs like this I whispered to Tom -

'I wasn't really holding you - I was just touching the saddle'

'Really? let's do it again'

and as we trundled back to Nicky I let go.

And off he went.

Obviously, now I'm terrified about the canal on the other side of the park...

Tuesday, September 08, 2009

Hello autumn

Tom has been experimenting with verse.

'Rain, rain go away. And never come back'

or

'Rain, rain go away. And go all the way to Australia'

or, most emphatically

'Rain, rain go away. Come back when I'm dead'

So yes, Edinburgh has been unpleasantly wet this September (and August for that matter - but that's to be expected - its the festival) and Tom is not a great fan of rain to boot. He manages to smile through it eventually...

So the summer has gone, in Scotland at least, school is back in session and it has been over four months since my last post. Tom's fifth birthday has been and gone in the mean time along with a whole raft of 'must write about that' moments that somehow didn't get beyond hasty envelope notes. I will endeavour to do better.

In the meantime, a shot of Tom and I taken on his birthday at Disneyland Paris, a little theme park we stumbled across on our way back through France during our vacation. Not the most 'Steiner' of holiday destinations but I would offer Tom's polite 'what's Disneyland?' question, uttered as we pulled in to the car park, as mitigation.


Wednesday, April 29, 2009

Assault on The Ben

So they did it - Tom's Grandpa Will organised an assault on the summit of Ben Nevis in aid of the Meningitis Trust and they all made it unscathed. That's snow on the ground you can see but still proudly wearing short sleeved T-shirts emblazoned, if you look carefully, with Tom's grinning face.

So enormous thanks to (from left) Stewart Hamilton, Will Adam, John Kerr, Ken Gouge and Aubrey Harris. The guys raised over £3,200 which is one heck of a feat!

We're proud of you guys.

Friday, April 24, 2009

Ski video...

This is definitely one for the grandparents - its a slightly long compilation of snippets that we took, mostly when Tom wasn't looking, at the end of his ski lessons. You might be able to detect a hint of pride in the voices on the commentary.

Bear in mind that this is the progress through one week of ski school...


Ski movie - Alpe d'Huez from Jason B on Vimeo.

Monday, April 20, 2009

A couple of things worth reading

I've read a couple of blog posts this morning that seem to summon up my state of mind.

The first is rather bleak - over at the normally upbeat Looky Daddy!

What's the point of drawing your attention to this? Well, because occasionally there is still dark moments when considering what has happened to our beautiful, innocent children. Amidst the frequent celebrations of successes there are still (blessedly infrequent) thoughts that feature the phrase 'why him? why us?'. The cheerful congratulations that accompanied Tom's skiing achievements are tempered, for example, by a fleeting 'this shouldn't be a big deal - this should be normal'. It sucks.

Most of the time I can tell myself that a self-indulgent pity party is not appropriate, particularly after spending a week with a group of families coping brilliantly with the same set of circumstances - or worse. But sometimes the thoughts linger.

I don't think its any coincidence that this has reared its head now - its anniversary time. Three years since Tom contracted meningitis and we wondered whether anything good might happen again.

But of course good things happen all the time.

The second post is by the rarely seen Magic Daddy - father to the wonderful Tom doppelganger Ethan, subject of Ethan's World, and splendidly illustrates the day-to-day, mostly joyful reality of parenting our resilient survivors. Brave, strong kids.

See what a mess of emotions it is?

While I catch you in this delicate state, one of Tom's grandpas is doing something special for The Meningitis Trust this weekend - climbing Ben Nevis with a number of his cronies. He deserves all our support.

Thursday, April 16, 2009

Ski bum


Check out Tom the ski bum. Newly qualified Ourson, courtesy of Ecole du Ski Francais and a trip to Alpe d'Huez in the French Alps along with a large group of other implanted kids and their families.

Another day, another opportunity to swell with pride.

Friday, March 27, 2009

I'm at work waaay too early this morning - the cleaners were still here. This led me to miss a rather funny 'Tomism' that Nik has just called to regale.

Tom came wandering out of the lounge with a pair of socks that he'd left on the coffee table last night (he likes to leave his socks in prominent places - a trait he shares with me) and announced that he was going to throw them away.

'Why Tom?'

'Because they're too small'

'Oh, OK well why don't we put them in the wash? Hazel (small granddaughter of a good friend) loves the Night Garden and we can pass them on to her once they're clean can't we?'

'Oh....errrr....' - Tom pondered and then came clean - 'they're really wet. I spilled my juice and cleaned it up with the socks.'

Thursday, March 26, 2009

The dietary habits of mermaids


So I got an unexpected opportunity to spend a midweek afternoon with Tom and we decided to go do stuff. Linlithgow Palace - birthplace of Mary, Queen of Scots and medieval castley type ruin - is within 30 minutes drive and I thought it might appeal to Tom's imagination. His play frequently features baddies, chases, ogres and the odd monster so having a good mental image of a castle - with towers and spiral staircases and all - to serve as a backdrop might go down well.

And we loved it - a hearty tour guide's thumbs up for Linlithgow Palace from us. We climbed tall towers and stood in every fireplace we could find. We explored wine cellars, kitchens and galleried halls. Tom didn't stop talking; asking questions and declaring his complicated theories. It took well over an hour for Tom to decide that 'Daddy, if we go in every room we'll be here for years...'

And so we went back to the courtyard for a close, last look at the ostentatious fountain before leaving. Resplendent with stone carved statues and gargoyles, the fountain needed lots of studying. Tom checked out each in turn before coming across a mermaid. He stared at it for a few seconds before deciding 'They live in the sea. They're really nice and people like them and feed them little pieces of banana.'

I defy you to follow that...

Friday, March 13, 2009

Still here - and a little too grown up

'Humpty-dumpty... had a little dumpty...'

'This is Humpty-dumpty number two daddy!'

'Who taught you that Tom?' (chuckling through a mouthful of noodles)...

'Shush daddy... listen!'

'Humpty-dumpty...had a little dumpty...I'm going to go and teach mummy'

There have been so many hilarious anecdotes that I've missed - so many impressive milestones. Tom is thriving in his Steiner school. He and Nik have at least two playdates a week it seems and I hear all about all his pals and... well, suffice it to say, Tom is firmly established in Edinburgh.

And we're content too - except would the **** who stole my bike please return it. City life.

Friday, January 30, 2009

About bloody time...

So - after over two years of deliberation and consultation the guidance is out - and the decision is a great one. All severe and profoundly deaf children in England and Wales are now eligible for bilateral implantation while adults with the same level of deafness are eligible for one (and a second in certain situations).

The legislation doesn't apply here in Scotland though (not unless you're post-meningitic that is) so there is a little more protesting to be done but it is a champagne decision.

Read more at 2ears2hear.

Friday, January 02, 2009

Christmas highlights

So a belated Happy New Year to one and all from one of the internationally renowned New Year party cities... where we stayed home and watched a hilariously poor movie before retiring at a sensible hour.

Highlights from the seasonal period...

When fibs are Good

The morning after the tree went up, Tom woke up shortly after 5am, convinced it was Christmas. Bad enough as this was, we had had a particularly late night that had left us all 'tired and emotional'. Nik resolved to combat a similar occurrence following on Christmas Day. So we got tardy with the advent candle and Tom cheerfully retired on Christmas Eve thinking there were two more sleeps 'til Christmas.

He woke up at 8am on Christmas morning to refreshed and recently caffeinated parents. A win-win example of 'when its ok to bend the truth' surely?

We're all Scottish now

My office is deep in tourist Edinburgh on the Royal Mile. Popping out to the shops for useful things, such as milk or 'something for dinner' is nigh on impossible. Tartan towels, tam-o-shanters and kilts however...

Nik and Tom met me from work on Christmas Eve with the intention of picking up a last minute present or two. Having hit on a good idea that could, remarkably, be obtained from one of the plethora of tourist outlets, we wandered in. Immediately Tom announced 'I would like a kilt!'. Tom is not an unusual 4 year old in that he has a lot of needs and desires which he likes to share with us and, as you might hope, we don't readily succumb. Being an only grandchild on one side of the family coupled with a life-threatening illness makes you the subject of quite enough generosity without parents joining in.

I responded with a rather fuzzy 'I don't think this shop has any your size and, besides, Christmas is coming (no mention of 'tomorrow' note - I was fully with the program by this stage)'. I must learn to be more explicit.

The enterprising shopkeeper overheard, of course, and quickly proved Daddy to be talking nonsense by revealing the range of cut-price children's kilts. Anyway... I challenge you to resist temptation when you know how cute and ripe with comedy potential the result is going to be.

Tom wore his kilt all Christmas day, removing it only to don his much-requested 'supersuit' for about 5 minutes. I think he found it quite liberating.

And yes, there are some stitches to take out so that it hangs properly. We have mothers so we have been told of our gross error.

And finally...

We have a clear case of parent favoritism going on at the moment. Undeserved of course. Tom finds me irresistible and I am his very best friend - to the exclusion of mummy in quite harsh terms. Mummy who does most of the fretting, looking after and day-to-day mundane stuff. It all counts for nothing when party daddy is available.

The cruelest line thus far - 'I love all of daddy, I only love mummy's face.'

Thursday, December 18, 2008

You can't trust anyone

Today is the last day of Tom's first Steiner term... he's had a great few months and has become much more outgoing, sociable and independent. He will draw without being press ganged and having crayons sellotaped to his hands too - now there's some step!

Very Steiner moments

Tom's first nativity was on Tuesday morning - a 15 minute burst of circle time with singing and led movement. Tom was a shepherd along with a couple of his wee friends (how Scottish are we becoming). I watched his lips mouth a good few lines of the songs and he was right up with the 'shepherds sleeping', 'shepherds dancing round in circles' and 'shepherds wave their hats in the air like crazy Afghans' moments. 'Precious' doesn't begin to describe it. There were a couple of manful stares at the ceiling to abate the tears, that's for sure.

Not so Steiner

The TV has not quite left Tom's life - greatly reduced and restricted but still popular. His imaginary play is a complex mix of movie plots, friends, Ruddington and Edinburgh and travel in between. To illustrate the pervading nature of TV's influence and how we must be marked at school as 'not quite there with the program yet' -

We were having a chat last night and I told Tom that yes, after he had his tea, we would play with his new city.
'Trust me..' I said
'You can't trust anyone' he replied, as quick as a flash.

After a little investigating we discovered that this is one of Kaa's lines from the Jungle Book - amazing us that he'd taken so much in and reminding us that we really must put a cap on that...

7 sleeps - the tension is building.

Tuesday, December 02, 2008

That's my boy...

Tom received some visitors this morning - a pair of Speech and language therapists no less. In a splendid example of collaborative working, the therapist from Crosshouse Hospital, Kilmarnock (the solitary Scottish paediatric implant centre) visits at the same time as her colleague from the Edinburgh team.

Why there are two and what they are each focused on is something of a mystery - this is the second time they have visited in the four-or-so months we've been here. They are very keen on assessing Tom and he quite likes the whole assessment process so it all seems mutually agreeable at the moment. They show him these books with four pictures, say some slightly strange statement and he points to a picture. Then all these adults smile at him and pay him even more attention.

Occasionally the adults stop and talk amongst themselves. Tom doesn't approve of this and quickly makes sure all the adults get back on task and get on with this picture game. The picture game is considered A Good Thing.

The pictures are some variant of a test for auditory comprehension - something like TACL I think - and Tom wouldn't let them stop until they'd got to the end. By that stage the questions were asking him to identify where 'neither the elephant nor the boy are standing on one leg' (or something to that effect) and other similarly tortuous, elaborate sentences.

There were a number of occasions towards the end of the test where Tom's finger firmly jabbed at the wrong picture. Before we knew how these tests worked, such failures left us concerned; noting down vocabulary and phrases to try to incorporate into everyday speech.

Then you get to realise that these are tests designed to work across a significant age range and you're supposed to keep going until you fail - that's how you work out the age equivalency.

So how did the wee man do today? Well, he left 'age-appropriate' in the dust and came in equivalent to a typical hearing seven year old.

Not bad for four and deaf really is it?

And this might be partly why the therapists like to stop by. Not much therapisin' needed and lots of just being proud of a smart little boy who knows how to listen.

Tuesday, November 25, 2008

Oh for the love of...

icing sugar...

Interesting times

So I get to school to drop off Tom. I have with me a note that Nik and I have written the night before, asking for a chat with Dawn, Tom’s teacher, to talk through something Tom has told us about him being upset the day before.

I’m met with a bright inquiry from Dawn –

‘So I hear you’ve got a new cat at home!’

Bemused silence. Nik’s fur allergy ensures such things are highly unlikely. Tom’s description of our new cat had been particularly vivid – to the extent that the tears he’d reported to us had actually been due to his upset at our new kitten being ‘too little to be left at home alone’.

The kitten in question – a slightly ragged towelling toy dating back to Tom’s birth – had become very popular for a day or two (acquiring the name ‘Israel’ along the way) and had clearly morphed into something much more meaningful when I wasn’t looking…

I take it such things are par for the course? Are we edging into imaginary friend territory here?

We’re all OK, by the way. Been a little quiet, I know, but we haven’t dropped off the earth yet… which is because of our stickiness since you ask. This was a recent ‘why?’ question from Tom. He seems to have grasped the earth is round somewhere along the line and shows a somewhat obsessive interest in maps and globes, and our place on them. Out of the blue a few weeks ago he asked why we didn’t fall off the earth.

Now I don’t want to be told this is perfectly normal – I want to remain stunningly impressed by the deduction that there might be an issue with the whole round earth/staying on it thing.

Around the same time as this question was posed the nights started drawing in to before Tom’s bedtime and he developed a dislike of being outside after dark. As we gently explored the reasons for this fear, we got the answer that he was frightened of rockets falling on him. How has he put that thought together?

Interesting times at our place.

Monday, October 13, 2008

A little story I should've shared

So my parents, Gypsy Pete and Diamond Lil, came to Edinburgh for their inaugural visit this past weekend. Tom was keen to show them his Edinburgh - the city of open-top bus tours, Arthur's Seat and his favourite museum - and we all had a great, and exhausting, time.

One evening, over dinner, Nik and I shared an anecdote about Tom and I was (lightly) reprimanded about the story's absence from the blog. Parents are allowed to do that (so long as its 'lightly' of course).

So here is the story.

One Sunday morning Tom and I were preparing to head out to the park.

'Now Tom, I want you to eat your breakfast before we go.'
'But I'm not hungry.'
'I'm not taking a bag with me so there won't be any snacks at the park.'
'I'm not hungry'
'I don't want you saying you're hungry as soon as we get there.'
'I won't...'
'Now are you sure...' - round and round a few times...

So we get to the park...and within five minutes
'Daddy...I'm hungry'
'But I asked you to eat your breakfast... I said that I wouldn't have a snack for you...'
'Daddy can we talk about the childcatcher?'
'But I told you that you had to have your breakfast'
'What do you want to say about the childcatcher?'

Needless to say I had also brought the snacks.

Wednesday, September 24, 2008

They're filling his head with rubbish!

Tom informed me tonight that old people live in dungarees. We got to the bottom of it after a little probing. Don't worry about the sartorial fate of the older generation in Scotland - it turns out they live in bungalows. Close-ish I think you'd agree.

After a less than happy week or two at his new school, Tom has has a really good day. No half-stifled tears or requests to stay at home - Tom approached the day in Kindy with eagerness and it looks like the day responded in kind. From what we can pick up from his wonderfully fractured description of the day it looks like he had a Good Time.

It would appear that there was a scale model of Arthur's Seat created in the sandpit - partly inspired by his explanation to Dawn, his teacher, that he was wearing his 'Arthur's Seat boots' I presume (there is a side story here about Tom's ascent of said Seat a weekend or two ago which led to the need to purchase boots). It would seem, according to further reports, that a boy named Matthew may or may not have knocked Arthur's Seat over on a number of occasions.

We also learned that drying the pots is Tom's job. He may, over time, learn not to disclose such a level of helpfulness with such eagerness. I hope not - Nik reports he's a particularly thorough cleaner at the moment.

Signs are good...

So here are a few photos - as requested by Hetha. Well, she didn't request a few but it has been a while.

Firstly - the importance of donuts cannot be underestimated. From a birthday trip to Blair Drummond where giraffes and rhinos and stuff were really cool until we found the dodgems and the sweet, life-giving sugary snacks.

And this was on the beach in Gullane - a bright and sunny Scottish day in late summer
And finally, Tom atop the Seat. We headed up there a couple of weekends ago while Nik had a well deserved lie in. I think a few of the sweating, heavy breathing adults who also made the early morning ascent were a little disconcerted to find a 4 year old there before them, munching on a piece of cake.

Tuesday, September 16, 2008

Difficult conversations

Tom is a talkative four year old. I may have mentioned this on occasion; for us it is, after all, a source of enormous comfort and pride given that it wasn’t looking to be a very likely outcome at one time. So Tom’s incessant chatter is the backdrop for our every waking hour; endless repetitive questions, detailed explanations of his needs and expressive dissent are on steady rotation only interrupted, and then reluctantly, by the insertion of food or a toothbrush into his mouth.

You may have picked up a ‘tone’ towards the end of that paragraph. It’s taken a while and a number of posts to get round to it but the admission is long overdue. Sometimes it would be nice if Tom ruminated and reflected for a moment. Silently. Just stopped for a breath occasionally – that would be enough. How can there be so many words in one so young?

Of course, this is a gross exaggeration. There are moments in the car perhaps when he’s gazing slack-jawed out of the window or licking the back seat to get the last of the sugar that fell from a doughnut three weeks ago. And what do we do?

‘Are you OK Tom? What are you doing?’… and it starts all over again.

I could regale you with some of the more hilarious exchanges but they would need so much back story and context that the humour would be lost. You had to be there.

A couple of less funny topics have sprung up though and I would appreciate a bit of advice if any reader wouldn’t mind. I’ve tried bringing the subject up in a couple of human-to-human conversations recently and it has jarred a little to say the least.

So we were innocently looking at wedding photos a week or two back and happened on a photo of my grandfather. I explained who he was and that he’d died. Death isn’t an entirely new concept to him – plants have gone all pale and brown on occasion and he has had similar conversations with a grandparent or two about their ancestors – but his curiosity about the matter had not been sated. And so the interrogation began.

I tried to stick, gently, to straight facts. Largely speaking, and perfectly typically for a four year old apparently, Tom was mostly interested in the practicalities of what dead people ‘do’ and where they are now. At one point I muddied the water with a rather abstract explanation about the benefit of memories and ‘pictures in my head’ of my grandparents. He, of course, wanted to see the pictures.

The subject has been revived on a number of occasions since, the most traumatic of which was a conversation which led to Tom tearfully saying ‘I don’t want to die.’ I wish I could remember how we got to that point; it certainly wasn’t preceded by me saying ‘you’re going to die’ or even ‘everybody dies’ – he made a leap of logic from somewhere far less obvious. Smart kid.

The tears and trauma, for Tom at least, lasted a few seconds and we got onto the safer ground of just how long it might take him to finish his toast. Did I mention that Tom is a slow eater? I think it might be connected to the talking thing.

So death has quietly slid off the conversational agenda over the last few days… to be replaced by meningitis.

Nik and Tom were invited to a photo-op event by the Meningitis Research Foundation. The event, which took place yesterday, involved children who had survived the disease throwing beanbags at a human sized purple bacterium (‘the guy in the meningitis suit’).

To prepare him for this, we showed Tom a recent newsletter from the Foundation, featuring said human-sized bacterium. And the questions began. And they don’t show any sign of ending any time soon. So far we have been called on to give the following answers:
  • meningitis isn’t really that big and doesn’t wear running shoes
  • meningitis is about as big as little Cat Z in The Cat in the Hat Comes Back
  • he had meningitis when he was little
  • it made him very poorly, involved a ride in an ambulance and a stay in hospital
  • it made him poorly by breaking tiny parts of him inside (I really regret starting this one – how do you explain cellular damage to a four year old? What was I thinking?)
  • doctors can see meningitis with special machines – that’s how they could see it when normal people can’t
  • we don’t know how it got into him; it was possibly his ears and probably wasn’t through his bottom
  • doctors made him better with medicine called penicillin (he was keen to know what kind – Tom is something of a medicine connoisseur)
  • it killed the meningitis
  • its not in him any more – its gone. Its just gone (trying to head off explanations about cellular ingestion)
  • he got better

We haven’t got as far as joining this up with his ears and deafness but I don’t doubt that its just over the horizon. He has taken it all in his stride thus far and I hope to God he continues the same way.

It’s just part of his story and brings no painful recollections or repetitive nightmares. That’s just us. He asks – so we tell him as best we can.

So what do you think?

Monday, September 08, 2008

Good news (?)

I've been otherwise engaged, web-wise, over the last week or so updating 2ears2hear - a website that I had a hand in setting up along with another CI dad. The site was set up at the end of last year to raise the profile of the then ongoing appraisal of cochlear implants by NICE (National Institute for Health and Clinical Excellence) here in the UK.

The course of this appraisal has not run smooth and has kept families on tenterhooks, what with their vacillations and oscillations. First there was the excitement of last December when the first appraisal guidance report pointed to bilateral implants for prelingually deafened children, post-meningitic children and children and adults who are blind. It was a big step - but still left hundreds of children and adults out.

Ahead of the second appraisal document's publication in March 2008, someone seemed to get a little anxious about the bill and the prelingually deafened children disappeared from the list. News of the credit crunch had reached the Health Service and belts were being tightened. Lets not worry about the future and think about the bottom line now...

So when the Final Appraisal Determination (where did they get these names from?) was published last week, I must admit to not feeling too optimistic about its contents but...

Well, you take a read.

There's another week to go before final publication and this rollercoaster may have another twist, sheer plunge or two to come but it would seem that, barring appeals from the formal consultees, the proposals are beyond what could ever have been expected.

All children with severe to profound deafness to get bilateral implants along with all blind adults and those with heavy reliance on hearing due to other disabilities... Note - there's no need to make special mention of the post-meningitic; the criteria are so broad. Now that is fabulous news. It brings with it a number of concerns - of which more in later posts - but firstly, on top of that great news, there is this statement:
Sequential bilateral cochlear implantation is not recommended as an option for people with severe to profound deafness. People who had a unilateral implant before publication of this guidance, and who fall into one of the categories described in 1.2, should have the option of an additional contralateral implant only if this is considered to provide sufficient benefit by the responsible clinician after an informed discussion with the individual person and their carers.
Now that sounds like an opportunity for more ambiguity and a continuation of the postcode lottery for a significant number of individuals - those who had the misfortune to get deaf at the wrong time.

The reason is all related to the QALYs and the cost of the second implant. Two ops cost enough more than one to tip the cost-effectiveness balance and, given the approximate nature of the calculations (I'm still no nearer understanding how you actually assign numbers to quality of life with anything approaching certainty), it pushes the cost of simultaneous implantation beyond the acceptable boundary.

Anyway, my fellow CI dad Dominic has put it all far more eloquently on http://www.2ears2hear.org.uk - he's the one behind the words, I just do the grunt work with the website. If you get a chance, there are a few interesting case studies on there too including one that gives a slightly different perspective.

Wednesday, August 27, 2008

On the eve of school and other stories

It's finally upon us - the first day of Kindy (as kindergarten is called at Tom's new school) is tomorrow.

Working out Tom's schooling up here in Edinburgh was a major deal for us - a big leap into the unknown. It took us away from Tania with all her incredible personal support and marvellous liaision work with the school in Ruddington and it took us away from a group of teachers and professionals who took the time to work Tom out and to ease his transition into the mad world of pre-school.

Finding the Steiner school has made what threatened to be an anxious period somewhat more straightforward.

Describing Steiner to family and friends has been a humorous experience. There have been a couple of 'in the know' friends who have responded with unbridled enthusiasm and cries of 'if only we could...'. A small number think we might be joining a cult and there are those who've needed potted summaries from the ground up.

And it hasn't been so easy to explain beyond a phrase I've found myself using time and again - 'I wish I'd gone there' and I'm so pleased that Tom has that opportunity.

It is the type of school that upholds and lives by those ideals you ponder on and yearn for when you despair of the commercialisation and materialism that so readily engulfs childhood. It is the type of school that will permeate into our lives in ways that prehaps other schools wouldn't and in ways that can only benefit us all.

I think I'm more excited than Tom...

Anyway... the last of Tom's birthday treats arrived at the tail end of last week. I took Friday off and we went to see 'The Gruffalo' - a play based on the hugely influential (in our house at least) book of the same name. Tom was stunned into silence again - barely moved for the full 50 minutes. Live theatre is so much easier than movies or TV for him language-wise, it is hardly surprising that it has the hold on him it does.

A second treat followed on Saturday... Safari Park time and, most importantly, an opportunity for Trevor to meet the family.

Trevor the giraffe is so important that we have a spare. He's in the back of a cupboard somewhere with gleaming white fur and well distributed stuffing. He no longer looks anything like the original and we have developed a whole 'health spa for giraffes' cover story should we need to carry out the exchange.

Anyway - Tom showed a great deal of enthusiasm for the animals... at least until he saw the dodgems and other fairground attractions. The first chink in this new-found enthusiasm for all things natural came in the rhino enclosure where, having seen his fill of these beasts and the graceful antelope that also lived there, he glanced out of the back window and shouted excitedly

'Look!! A Mercedes!!!'

Yes - more interested in the car following us. He's a proper boy isn't he?