I am Tom

Me at the skate park

2011-08-07T18:30:00.002Z

Yesterday daddy and I went to the skate park at Saughton. I had a great time - my bike was being a bit crazy in the wet though.

My birthday

2011-08-07T18:24:00.003Z

I had a fantastic cake of Lightning McQueen.

Ke-chow!

Just before I went to Pizza Hut I went to see Cars 2. It was good - I do like Finn McMissile. I went with my friends Noah, Sam and Matthew.

Milo-blog

2011-07-18T15:42:00.006Z

This is my little brother Milo. He was born on Tuesday 12th July. He came home on Friday. He's very cute and I love him very much. He does smell a little bit sometimes though.....................

Armed Forces Day Parade

2011-06-26T13:57:00.001Z

I went to see the parade on the Royal Mile with Grandpa and Savta. Lots of people went by with different uniforms including this band from the RAF - like Papa.

My Granny

2011-06-20T18:04:00.001Z

This is my granny. She came to visit and borrowed mummy's fancy wedding hat. Doesn't she look lovely? She is.

TOM asleep

2011-06-20T17:59:00.003Z

This is a photo that mummy took after I went to sleep. Doesn't Tom look peaceful - I wasn't; I was having a bad dream?

See that red wall - that's to make my room look like the Gryffindor common room.

Mummy's baby bump with daddy peering round

2011-06-02T17:24:00.002Z

Sunny, sunny Edinburgh, We like June.

Enjoy-a-ball

2011-05-31T16:19:00.004Z

Benjamin's back. Benjamin was being a bit silly because he didn't have a stick but Reuben didn't have one. My friend Felix took this photo.

This is me and my friend Felix after enjoy-a-ball. Felix is funny. He was nudging my head around.

Today we played tennis at enjoy-a-ball.

From Tom

Hideout school

2011-05-30T18:00:00.002Z

This is the hideout that LEO made on his own and its a superhero hideout and it was made specially for Captain America and we were hoping he would come to kindergarten to use the hideout.

Leo is one of my friends at school.

Jedi star battle

2011-05-30T17:49:00.003Z

Hello - I'm Tom and this is not my daddy's blog any more. I've taken over! I'm going to try and take a picture every day and put it up here. Daddy does something called blipfoto and I thought I'd like to do it too. They said I couldn't do it until I was 13 which didn't make me very happy so Daddy said i should take over here!

This is my first picture of the day and I thought it was going to go onto blip but I couldn't! I really don't like the people who run the internet!

'En garde'

2009-12-23T08:55:00.008Z

December 23rd

So Tom is beside himself with excitement as befits any five year old. There are hourly checks on how long it is to Christmas day and sleep is not easily reached no matter how calm the bedtime routine. Given the persistent snow (another couple of inches last night) over Edinburgh turning it into a picture postcard and the presence of grandparents and you might reasonably gather than the seasonal spirit has entered our home.

You shouldn't take the silence to mean nothing is going on of course - quite the opposite. Life is hectic and the boy grows in every way except outwards although I think he intends to work on that over the holidays. Tom's skinniness has been exaggerated by the recent move from Advanced Bionics' bodyworn processors to BTEs. We always felt that the bodyworn really worked for Tom at a young age; only the coil to worry about for Tom and he quickly learnt to manage that. Now, at five, not being able to dress himself is becoming a minor bind (he would happily spend the day in his pyjamas)...

December 27th - after a brief hiatus for a period we call 'Christmas'...

And that's why I don't post so much - get in early to work in the hope of getting this done, the phone rings and bang, its gone.

So...where was I? The BTEs are working out well - Tom can put them on himself and...and this is special...he doesn't need to check on his parents when his early rising grandparents are around to amuse him. And take part in duels. There are lots of duels in our house this year. Christmas 2009 is the season of the Musketeer around these parts.

It has been building up for a few months; Tom and I have been striding around the city with plastic swords in our belts stopping in front of shops and museums for quick 'one for all...' moments but there have been down days when other games and activities could be levered in.

Not so now - not since the costume arrived.

For the week or two prior to Christmas, an improvised musketeer costume sufficed; a wide brimmed summer hat of mine pinned up on one side accompanied by a belt and (highly inferior) Zorro sword. The first item opened on Christmas morning, however, has cast that to history.

We manage to smuggle his pyjamas out from underneath the costume occasionally and replace with clothes but basically, that's Tom now. Or D'Artagnan, as he prefers to be addressed. It has taken over his every thought.

I give you an example - Tom has just sprinted in 'give me your sword - it's much better. Grandpa is the king - I'm going to execute him!'

So his vocabulary is expanding in interesting ways and the boy can spot a Fleur de Lys at 100 paces. Not very Steiner I grant you and we face a few days of intensive deprogramming ahead of his return to school but if you're going to choose an alternative life for yourself, musketeering isn't a bad career for a young man.

So sorry Uncle Dave - the bike sits in the kitchen largely untouched and cousin Jamie (we think?), Tom has barely acknowledged the wonderful knight's costume you sent. Snubbed is a strong word but... its time will come - maybe. Many beautiful gifts wait to be discovered but for now, a £3.99 plastic sword and a flouncy nylon shirt-and-tabard creation hold sway.

Happy happy holidays.

Regards, 'Porthos'.

Another couple of dragons slain

2009-09-13T18:48:00.006Z

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...

Hello autumn

2009-09-08T08:48:00.003Z

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.

Assault on The Ben

2009-04-29T09:14:00.003Z

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.

Ski video...

2009-04-24T08:04:00.002Z

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.

A couple of things worth reading

2009-04-20T10:57:00.003Z

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.

Ski bum

2009-04-16T21:55:00.002Z

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.

The dietary habits of mermaids

2009-03-26T22:16:00.003Z

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...

Still here - and a little too grown up

2009-03-13T21:03:00.002Z

'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.

About bloody time...

2009-01-30T09:12:00.003Z

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.

Christmas highlights

2009-01-02T09:04:00.005Z

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.'

You can't trust anyone

2008-12-18T09:16:00.002Z

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.

That's my boy...

2008-12-02T21:09:00.003Z

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.

Oh for the love of...

2008-11-25T20:41:00.002Z

icing sugar...

Interesting times

2008-11-25T20:33:00.001Z

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.

A little story I should've shared

2008-10-13T19:50:00.003Z

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.

They're filling his head with rubbish!

2008-09-24T20:08:00.004Z

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.

Difficult conversations

2008-09-16T19:03:00.005Z

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?

Good news (?)

2008-09-08T21:20:00.005Z

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.

On the eve of school and other stories

2008-08-27T19:37:00.008Z

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?

Greetings from Edinburgh

2008-08-18T21:47:00.001Z

So we finally got moved four weeks ago and, after a catalogue of delays and general buggering about on the part of numerous conveyancing and real estate ‘professionals’ (and I use that term pretty loosely), last Friday we actually sold the place back in Nottinghamshire. It only took a year.

Amid the stresses, strains, thrills and spills of moving have been any number of moments when I’ve thought ‘I really must blog that’. But those boxes won’t unpack themselves and, with a new city to be explored, we’ve all been focussing elsewhere.

So… a few potted highlights:

Meet the gang

Tom talks about ‘the old house’ and Ruddington (the village where we lived) a lot. Summer might seem like a convenient time for moving to a parent but, for a four year old who has just fallen in love with this whole nursery/school thing, it just accentuates the ‘differentness’ of this new place and the lack of playmates.

Tom’s approach has been to elevate previously ignored soft toys to the status of friends. The gang includes Trevor the much adored (and frequently filthy) giraffe; Steve, a teddy bear with an irritating jingle; a gangly frog called Eyeball; Mister Cat and a few other recent additions including a koala with unfortunate chalk marks.

We have just about manage to restrict the party to one or two for outings but, when Tom is negotiating the flat in his pushalong car, the whole mob gets crammed in the back.

Personalities have been developed – Trevor is the devil-may-care somersault expert and toy most likely to slide down a muddy bank while the koala has rapidly developed a level of authority-defying cheekiness – and we’re certainly not discouraging this endearing foible. Indeed, it gets every day started with a smile.

Tom’s bedroom is at the opposite end of the flat to the bathroom and our room and, every morning, Tom drives all his cuddly friends to the toilet where he, courteously, holds each of them up to pee before he finally takes his turn. We lie in bed next door, giggling as he provides the appropriate sound effect.

Festival!

So we arrived in Edinburgh just in time for the festival and, while I squeezed a few evenings of grown-up entertainment in while Nik and Tom were in Geneva, the highlight thus far has to be Tom’s fourth birthday treat - The Bubble Guy - http://www.bubbleguy.com/bubbleman/ .

Bubbles filled with smoke, bubbles inside bubbles, kids kissing bubbles, people inside bubbles – what’s not to love about that. Watching Tom’s face and seeing him completely enraptured for nearly an hour was the perfect gift for us – and I hope it was some compensation for him given that his party consisted of playing pass the parcel with three grown ups and sharing his cake with a line of stuffed toys in party hats.

So I’m writing this during one of my all too frequent stays in a dull London hotel – away from my beautiful wife and son in our splendid new city. Talking about them brings me closer to them in some small way and helps pass the evening – I really should do it more often.

I phoned home about 6pm, hoping to talk to Tom before he goes to bed. Occasionally he’s keen to talk and answers questions happily, telling me about his day and his many needs. Today, for the first time, he answered the phone and shrieked happily to Nik - ‘It’s daddy!!’

It’s a measure of how successful Tom is with his implants that it took me some minutes to realise what an achievement this is.

Memories...

2008-07-16T18:17:00.002Z

What’s your earliest memory? I was a forces child and can frame early memories in terms of the houses we lived in at different times. I have a block of abstract, unconnected recollections dating from the house we lived in between the ages of two and six - I presume most of them come from the tail end of that period but maybe my parents will enlighten me (I know you read this so here is your big invitation to reveal yourself and comment!).

So, as my inexorably slow train journey home dwindles on (a door problem at Market Harborough – lots of increasingly tense commuters unable to get off) here are my memories from that early period:

Learning to ride without stabilisers – taken to the top of a hill and just let go
Falling in a dry river bed, dissolving in snot and tears and being helped home by a ‘big boy’
Purple walls in the lounge
My mother picking me up from nursery in a red plastic rain hat
Telling people I didn’t eat eggs because they made me throw up (I don’t remember the puking but I do remember telling people all about it)
A homemade cheesecake with a base so thick that it needed industrial tools to cut it
Sitting on the (black leather?) sofa with my dad trying to teach me to breath without opening my mouth

Some, or all, of these stories may well have been embellished with retelling over the years although I’ve tried to pick the ‘genuine’ ones (Lil, Pete it’s over to you). You know how it is though, family legends build up over time and I can no longer be sure which is which.

It has got me round to pondering on what Tom will remember of this period. In a few weeks he’ll be four (cripes, where did that come from); slap bang in the middle of the period I’ve been recalling and around the age at which ‘earliest memories’ are stored away for later recall and, well, his short life has been pretty eventful. Does that make it more likely to stick in his head?

In a few short days we will, finally, be in Edinburgh (yes, it has taken a frustratingly long time) so what will Tom recall about our house and life here in Ruddington? The garden? His room? Joe-the-boy-next-door? Hopefully that friendship will endure and we will see them all again. Tanya, his wonderful Teacher of the Deaf who we are already missing enormously? Mrs. Henson and the teachers at his first school?

Tom already surprises us with random recollections from months gone by so who knows what will stick and what will drift away into the ether. Undoubtedly it will be things we least expect, matters car-related and, equally certainly, we will reinforce the events that stick out for us – the things that make it a happy place in our collective past rather than the dark periods that we try to forget. One of those happened last weekend and will be drilled into Tom in the same way as my dubious victory in a Blue Peter competition (some time in the '72-'78 period for those who know their Blue Peter) has gathered an undeserved magnitude in my story.

Last Saturday, minor local celebrity that he is, Tom opened a fete. He cut the ribbon and everything. How cool is that? Opening fetes before you’re four? Now there’s one to tell the grandchildren.

Thank heaven for little boys.

2008-07-04T19:11:00.003Z

Back in April Tom took part in a study at the University of York. The study, being carried out by Rosie Lovett under the direction of Professor Quentin Summerfield, is assessing the spatial listening skills of children with cochlear implants. Rosie is clever - it says so here. This is a formal take on Rosie's study and here is a short ramble about Tom's small part in it.

Rosie and the Mufessor sent us the results of Tom's assessments and they demonstrate just what a marvellous creation cochlear implants are, how justified we were in pushing for bilaterals and what powers of concentration Tom has developed. This last one is a surprising but not unwelcome byproduct of the long hours of therapy, mapping and assessment Tom has endured over the past couple of years. The study in York took three hours, interspersed with three breaks, and our wee man powered through - engaged and compliant throughout.

In terms of the results - they quantified what we see every day. Tom is performing incredibly well in terms of left-right discrimination and, while nowhere close to normal hearing children, he can discern speech through quite a significant level of noise - the benefits of bilateral implantation that we were so keen on him acquiring.

When Rosie's study is complete, I fully expect it to join this recently published paper (abstract here) in the growing pile of evidence that demonstrates the bleedin' obvious - two ears are significantly (QALY and scientifically speaking) better than one.

At the end of our day out in York back in April, Rosie took a picture of Tom in the hallway outside the 'ring of sound' room - we were in an ajoining room getting our stuff together. We kept hearing Rosie giggling, with Tom joining in as is his wont.

'Tom... could you take your hands out of your trousers for this picture?'...

Rosie sent a lovely 'Junior Investigator' certificate with the report; glossy with a portrait of Tom at its centre. Mercifully, it has been cropped at the waist but, given the angle of the arms, its quite clear where his hands are.

Thank heaven for little boys.

A timely reminder on a Friday evening

2008-06-27T18:45:00.003Z

The three of us sat down for dinner a couple of hours ago (we still have a table and just enough crockery to perform this daring feat - nigh on everything else is already in Edinburgh). Nik and I were putting a few work issues to rest when Tom piped up.

'Hey - what are you two talking about?'

'We're talking about work sweetie'

'Well stop talking about that!'

'OK - so what do you want to talk about?'

A big smile broke across Tom's face
'I want to talk about cars! - Let's talk about the noise a big engine makes!'

Yay. It's the weekend. Down tools everyone.

Not quite there yet...

2008-06-23T18:55:00.005Z

This was supposed to be the entry that opened with an excitable, emphatic 'We're in Edinburgh!'... but...

Instead I'm sat at a borrowed picnic table that's serving as a temporary desk, surrounded by empty shelves and wondering just how the English house-buying system ever evolved into this drawn out torture. Like with any of these things, it's the uncertainty that gets to you. Our buying process is currently suffering from information constipation - there seems to be a hold-up a couple of links down the chain that wasn't as close to not being a hold-up as we were led to believe... so plans have got out of sync and, well, we now have the minimalist space we once dreamed of (and there's a little too much echo), a rather limited array of crockery... and I am typing at a picnic table. As you might have guessed, we're a little ahead of ourselves and the majority of our possessions are packed up and gone.

Tom, for the most part, is coping very well with these unsettled times. There's been the odd wobble - the questions about whether he'll still be going to his school and whether Mrs Charlton and Mrs Henson will be there - but for the most part he's finding the process exciting. We were nervous about the whole process. There's a story my parents like to tell about moving house when I was around two - I refused to remove my coat because I wasn't stopping. The length of time that this went on for has, I think, crept up over the years. But we have been sensitive to the little guy's feelings and Nik has done an incredible job of preparing him. We learned very quickly that packing stuff without his knowledge would meet with an adverse reaction and so he has been involved at every step. He helped make the boxes up (and hid in each one), pack some of his toys (his first line one morning was 'I've packed some more of my toys!' after we'd left an open box in his room) and load his push-along car on the van.

The biggest sigh of relief came with the dismantling of the beloved racing car bed. Tom dived in with his screwdriver and, in five minutes, the job was done. He's even loving the whole camping on the floor thing. All we've got to do now is move...

So why Edinburgh? Well, if you're in the UK and follow such things, this might be reason enough but we have a few others too. The company I work for has opened an office in the city (on the Royal Mile no less) and, after four years, I am done with working from home. Nik did her studying in Edinburgh, loves the city and she has family there too. For Nik and I then, the city is perfect but what about the wee man?

First and foremost, there is a pretty solid financial incentive. When we move, Tom's 'private' implant will no longer be our responsibility and will become state funded. I've checked. Twice. Just to make sure. If Tom had had meningitis in Scotland, under current legislation he would have had bilateral implants automatically and we discovered that this level of support applies to incomers too.

So that's good news for him... the sort that leaves a bittersweet taste given the number of children and adults with single implants in this country who don't have this option open to them (and NICE are yet to rule either way - current expected date September 2008 with a 4th appraisal committee meeting on 17th July). We have always counted ourselves fortunate in being able to push ahead with the second implant in spite of the decision made by the PCT and have prepared ourselves financially but this is an enormous relief and provides some stability and assurance. Until the NHS goes belly-up that is.

We've also found a wonderful school a few minutes walk from where we're going to be living. It looks like a fabulous fit for Tom - a little offbeat, small and focused on the individual. It's worthy of its own post but here's a primer on Rudolf Steiner schools. I've just watched one of the dvds posted there and discovered that Tilda Swinton is a Steiner parent. Now I'm not one to get starstruck but she does say the very thing I was going to finish on - the school makes you wish you went there and you can't get a much more positive recommendation than that.

Father's Day

2008-06-16T07:09:00.003Z

Father's day morning - I got up a few minutes ahead of Tom and was checking email when he emerged from his room.

A split second of confusion - he's not used to either of us beating him to be first up - before he said 'I will go back and get the card in just a second'... (he and Nik had stowed my Father's Day card under his pillow because, obviously, it would be much cuter for him to fetch it out himself and had nothing to do with avoiding being disturbed herself!).

I turned and said 'Go and have a wee-wee'

'I will' came the reply and off he went.

Tom is really comfortable without his 'ears' on first thing in the morning. I think he enjoys the cuddles without the paraphenalia (he uses the Advanced Bionics bodyworn with a single harness holding both processors) and his lipreading is pretty impressive when the context is limited and the routine so well established.

A cute moment to savour.

Sports Day

2008-06-14T19:03:00.008Z

I must admit to not being fully prepared for Tom's Nursery Sports Day. It was only a matter of hours before its start that I even considered going but thank goodness I did. I could dress this post up in so many ways and the sports day would serve up the necessary material in spades.

Firstly, and most personally, the hour-long burst of races was a testament to the incredible progress that Tom has made in terms of his balance and mobility since the meningitis. His running stride is elegant and, to my only-slightly-trained-eye, straight and true. For evidence, I submit the following:

These two pictures were taken during the final race which, according to the program, was the 'Let's have a drink in the garden... but watch out for the bees and wasps!! race'. Which leads me neatly on to the second subplot - the event was devised by a comedy genius - or geniuses - who had come up with a series of eight races. Under the theme 'Gardener's World', each race had a subtle twist designed, presumably, to keep the interest of three and four year olds. In keeping with your average Pixar production, this had the possibly inadvertent effect of also making adults howl with laughter.

The first race set the stage perfectly - the 'You need to get a big bag of compost home from Asda' race (US translation: Asda is a proud member of the Walmart family) saw half a dozen earnest kiddies in pushalong cars grinding their way down a 50 yard track with, seemingly full bags of compost strapped to their roofs. Aaah heck, you need to see it...
Note the stockcar style being adopted by some of the drivers - it really needed to be seen to be believed. Little legs sticking out of the bottom of the cars, going ten to the dozen and going nowhere fast.

Every race had a new twist... 'Now collect your plant pots in your wheelbarrow' needs little explanation. Nor does the 'Your plant needs water to help them grow... you will need your watering can' race. Suffice it to say, it kept us all highly amused and utterly refreshed by the lack of guile or competitiveness on show. I lost count of the number of times that the leader, streaking ahead and only yards from the line, stopped and waited for a friend. One little boy, in the 'Time to cut the grass... again... can you mow in a straight line?' race, flew in the face of convention and worked his way across the track in neat strips, turning neatly at each side just as he'd seen his daddy do.

I had time to enjoy that... seeing as Tom had creamed everyone in that race.

Did I say it wasn't competitive?

Please note the 'Tongue of Concentration'.

Given that the week to come is the last for Tom at this school, sports day was a sweet finale to his first school experience. All fears about how he would cope in a mainstream environment have been dispelled. While supported well by the school, he has needed less and less individual or special attention as the term has worn on and will excel in mainstream education.

So thank you James Peacock School, Ruddington. We will miss you.

Hello again...

2008-06-11T18:56:00.007Z

I've thought about posting so often over the last month but events have always moved on and the moment has been lost. There have been holidays and trips that I intended to share...

This one actually dates back to an Easter trip to Grandpa and Savta. Grandpa and Tom were bestest buddies for a week. Grandpa has 'holiday cars' - you can only begin to grasp just how exciting that is.

There has been another trip or two too - hasn't it been a long time? Or are we just having too many holidays?

Tom gave my mum a run out on the beaches of Normandy.

It hasn't all been excitement and play. Well actually, it just about has as far as Tom is concerned but there was one sad day in late April. My somewhat neglected but kind of loved car failed its annual MOT test in dramatic and expensive style. This photo is from the drawn out goodbye ceremony and endless run of 'last plays in daddy's car'.

He has since told everyone about how daddy's car went to the garage and didn't come back. I thought he might pine a little but he shows no outward signs of grief. I think his passion for 'the-car-that-flies' has seen him through. It's not as if the obsession needed any encouragement but Nik's aunt, uncle and cousin did it anyway and took us all to see the stage version which is currently touring the UK. Given Tom's tendency for role play and completion immersion in character, it won't surprise you to know that he went to the theatre dressed as Caractacus Potts.

He has told his teachers once or twice that that's his name.

So that's the story of the last month or so... one of car-obsessed, carbon-footprint creating travel and revelry. Tom has adapted to nursery extremely well and - whisper it - he already seems to be at a place where he doesn't need any additional support. That's not to say it isn't on offer or hovering in the wings but we've had the sort of conversation with educational professionals that starts 'I realise that I don't treat Tom any differently to any other child...' and 'I have never had a deaf child that I've thought could do this well...'.

Things are going well... so its time to shake things up.

We put our house up for sale in the same week that the run on Northern Rock began. Not the finest or most astute piece of timing but, hey, when you've gotta go...

Nine months and several price drops later it has sold and we're now a couple of weeks away from moving. Boxes are piling up, lists have been compiled and plans made. By the end of June we'll be living in Edinburgh and starting a whole new chapter. Tom's needs have been at the forefront of our minds throughout the process and, now I'm back in the blogwriting groove, I'll explain a little more.

Next time.

Beyond Boundaries: Across the Andes

2008-05-12T19:23:00.004Z

If you have access to the BBC don't miss Beyond Boundaries: Across the Andes. The first part aired last Friday evening and is still available via iPlayer - for the next 4 days at least (I don't think you can view this in the US unfortunately). There are three more episodes to come.

The programme follows ten disabled young people as they enjoy/endure a month-long trek across Ecuador. It is some mighty powerful TV - heroic endeavour mixed with very real displays of youthful frustration in circumstances that would test the most able bodied.

There are three deaf people in the group including Jeremy, a cochlear implant user from not so many miles from here. Towards the end of the first episode, the very real difficulties they experienced while working within a team were well portrayed and contrasted powerfully with the more obvious problems being overcome by the amputees and wheelchair bound.

Prime time cochlear implants - who'd have thought.

Tom's next year

2008-04-23T21:38:00.004Z

So it has now been two years since the rush to hospital, the diagnosis and the long wait. Time has done its healing and Tom has done some growing and recovering. He is in a wonderful place now.

A year ago I put together a montage of video clips and photos to show that progress and posted it here. There is now a sequel. It isn't quite as poignant a journey - its my opportunity to be super-indulgent dad.

So without further ado -

Tom's next year from Jason B on Vimeo.

This new fangled blogging - tagging business

2008-04-17T06:27:00.004Z

So Mom to Toes would like to know more about me and has 'tagged' the blog with this little questionnaire... well, I have a few minutes before himself emerges from his bedroom (maybe) so I'll have a stab. Given that its more about Tom than me, I'll answer it from his perspective.

A Blogger Tagging Game

1. The rules of the game get posted at the beginning.
2. Each player answers the questions about themselves.
3. At the end of the post, the player tags 5 people and posts their name, then goes to their blogs and leaves them a comment, letting them know they've been tagged and asking them to read your blog.

I have to answer questions and people I tag have to answer the same questions, so here I go.

What was I doing 10 years ago:
Before I was a little boy, I was a baby. Then I was in mummy's tummy. Then I was a little boy and you were a little boy and you lived with Nanny and Papa and you played with me.
(Tom is not quite getting the 'not existing pre-birth' thing. He has also mistaken 'born' for 'bought' which is quite funny).

Me? 10 years ago I was a school teacher and still doing the job that I'm occasionally nostalgic about. It was '99 when the wheels came off.

Five Snacks I enjoy:
- Cake.... with icing. First I eat the icing then I leave a trail of the cake around so that daddy knows where I am
- Biscuits
- Chocolate
- Apples - really, I do
- Ice cream and I like to hold it until its running down my hand and possibly the walls too

and me? yeah, pretty much the same except faster and tidier

In the real world:
- Raisins and when you leave them in the sofa and on the windowsill they look like dead flies
- Fruit... lots and lots of fruit
- and cake
- and biscuits
- and sweets (trans. 'candy')

Things I would do if I were a billionaire:
Buy sweets. And cars. And biscuits. And treats. Lots and lots of treats.

I'm with him on the treat thing

Five jobs that I have had:
- My job is playing and when I'm pretending to be daddy its fixing.
- Pirate
- Scooby Doo
- Donkey
- Pingu

To fund these flights of fancy for Tom I'm a 'Usability Consultant' and if you know what that is, let me know because I'm not entirely sure.

Back in the day, I've been a farmhand, a school teacher and 'that web guy'.

Three of my habits:
- Asking 'why?' ALL THE LIVE LONG DAY
- Chitty Chitty Bang Bang
- Biscuits. Less habit, more 'addiction'

Me? Too busy to have habits.

Five place I have lived:
- The little house where I lived when I was a little baby
- This house
- Where we'll live if we ever sell...

Daddy lived all over the place (its an Armed Forces child thing thats turned into a 'can't make my mind up' thing)

Add one new part:
And this seems the most sensible new part...

What are the best pieces of advice you could offer parents of children newly diagnosed with a hearing loss:

1. Read a lot. Ask lots of questions of professionals and of other parents and then make decisions.

2. Do not let your child’s hearing loss define him/her.... or *you*. (Couldn't agree more with this one so I'm not going to change it).

And all the likely suspects are already tagged I think!

A comedy master class

2008-04-15T20:53:00.006Z

This evening - at the dinner table. Tom, not overly impressed with the meal presented to him, is playing around and resisting all attempts to persuade him to eat.

Nik is doing faux-grumpy... which may actually be edging into genuine frustration with his stalling tactics.

'Tom... you're making mummy cross now. Are you going to eat your dinner?'

'At school Joe eats outside... in the drain'

... mustn't look up... mustn't make eye contact...

'If you don't eat some more potato, there will be no pudding Tom...'

'Harrison... wears girl's shoes'

Must... resist.... must not laugh...

We eventually leave him to it and retire to the kitchen. I threaten to eat the jelly and Tom stuffs his mouth full of everything left on the plate and appears in the kitchen to recover his dessert - without his trousers.

He returns to the table, smiling. Plotting.

We wash up. I can hear the telltale beeping of disconnected implants.

Tom has strapped himself into his booster cushion. Naked.

'I've taken my clothes off!'

I give up and we guffaw the evening away.

A bumper news day!

2008-04-14T18:28:00.004Z

In the interests of preserving some sort of historic record, the last month or so has featured a few highlights worthy of record, in retrospect at least. That is to say, events that do not include 'that slave-driving company that I work for finding even more things for me to do' which may well be Nik's abiding memory of this spring.

Schools and all that

So... there was the Saga of the School Places which gripped Ruddington over the Easter period. The first we heard of it was via an email we received while in France and it darned near spoiled our holiday, let me tell you. We had applied for a place at the local infants school for next January as per instruction and the email informed us that the Local Authority had turned down our application.

I should mention that this is the only infants school in the village. It is the infants school to which the nursery Tom currently attends is attached. It is the infants school that has received funding to carry out improvements to the infants' classroom - in preparation for the arrival of a deaf boy with cochlear implants (yes, that would be Tom). It is the Local Authority that employs Tom's Teacher of the Deaf and had her train the infants school staff in all matters cochlear implant ahead of... well guess...

One has to admire the foresight, planning and communication at work there.

We came home to find a village in uproar. Okay, not quite; Tom was one of 17 children turned down, including Joe-the-boy-next-door, the daughter of 'that couple from ante-natal' and the daughter of the greengrocer. The school was full - its 60 places (class sizes are restricted to 30 by law for the first couple of years of school) taken up by children living closer than us. We tapped in to the 'word on the street' and the ruthless cut-and-thrust of school places was made plain to us. Stories of grandparents' and shop addresses being used on applications surfaced. Ruthless tactics for appeals hearings were shared and honed. Things were starting to look ugly.

Just as the torches were being lit and the posse rounded up however, our righteous indignation was punctured by the news that the school had found room (an extra classroom that it had misplaced or something) and there would be no need for the banners and marches.

So that's all fine then... but one might imagine the number of times phrases such as 'What is WITH these people?' passed our lips. It makes you think that this county just isn't THERE for us at the moment...

On a lighter note

Apropos nothing, Tom suddenly remembered our visit to Sundown last spring. In particular, he remembered a ride on a particularly tame river ride with a few strategically placed water jets.

'Yes! It wet daddy's teeny-tiny hair!' accompanied by thumb and forefinger held very close together.

Over the coming years I suspect that my son will say much less kind things about my rapidly disappearing hair than this.

A Grand Day Out

And bringing you right up to date, today Tom took part in a study being carried out by Rosie Lovett and Professor Quentin Summerfield at the University of York. Given this link, I'm guessing the project is sponsored by Deafness Research UK. The study is one of a number trying to fill the gap in terms of published research regarding the benefits of bilateral implantation.

Rosie's study involved Tom playing numerous listening games in the University's 'ring of sound', testing his ability to detect the direction from which a sound is coming and hearing in noise.

We'll get his official 'results' in the next few weeks but it certainly looked to us like he was performing pretty well.

We'd prepared Tom for his trip to see Rosie and the Professor, telling him about the exciting games they had lined up. He was a little overwhelmed when we got there, turning mute and hiding behind the furniture, and more than a little impressed with 'the Mufessor'.

As he eased himself into the day, Tom's cheekiness returned although he stuck resolutely to this title for Prof. Summerfield even after being invited to call him Quentin. On the first of many trips to the toilet during the day, he declared proudly 'this is where the Mufessor wees!'

My, hasn't he grown?

2008-03-27T20:52:00.003Z

Tom had his hair cut just before we went away over Easter. The curls were running rampant, the knots were creating morning grooming 'issues' and frequent fringe trims were leaving the resultant mop in a state one might describe as 'mullety'.

Cutting his hair aged him about 2 years in 10 swift-clipping minutes. Where did our baby go?

What is going on in that little head?

2008-03-26T20:46:00.005Z

So we've been on a short holiday and Tom got to explore many aspects of French culture. Largely speaking, this involved gnawing on baguettes, pretending to drive 'holiday cars' (one of his grandfathers has so many cars that he leaves a few just for holidays) and befriending the local wildlife.

A day or so before we came home, we were wandering around a suitably picturesque Provencal village when Tom and Nik happened upon a cat who wasn't put off by his shrieking excitement and deigned to allow an approach. After a short bout of stroking, the cat nonchalantly departed but not before being declared a 'friend-a-ly cat'. By any measure it was a brief encounter. It provided a suitable opportunity for a little light language development and lessons about caution around animals but Tom was soon onto other exciting projects (including taking photographs - his choice of subject is quite eclectic - 'this dirt!', 'this road!', 'this car!!!') and the stroking fun was seemingly forgotten.

It hadn't gone far. The subject of the friend-a-ly cat was returned to in the car journey back to where we were staying. Yes, he was a very nice cat I agreed. I, too, liked him a lot. Then Tom's finely tuned sense of propriety and decorum kicked in.

We should invite the cat over for dinner.

Surely that would be a long walk, I argued. He doesn't know where we're staying.

This argument was roundly dismissed - his mummy and daddy could bring him in their car. Yes, he would like that a lot. We shall have the friend-a-ly cat for dinner.

I opted to play along. In retrospect this may have been my critical error but it was all in the name of fun language development and, well, we parents don't always know how it will pan out.

So when should we have called a halt? Before we laid a plate of rice at the table for the cat (Tom misheard me suggest 'mice' - or he just couldn't sanction such a ridiculous meal suggestion)? When I tried to use one of his soft toys as a 'pretend' friend-a-ly cat?

We had to start tea without the cat, oddly enough, although his tardiness did not go unnoticed. At some point I said to Tom 'we're only pretending aren't we?'. The tears welled up immediately and I could see Nik and her dad stifling those half-laughs/half-pouts of sympathy as Tom persisted with an increasingly tearful 'he is coming!'

'But sweetheart, cats can't talk... he can't tell his mummy and daddy where we live...'

'He can!' (thank you Pixar and Dreamworks for your witty and realistic personification)...

I tried in a similar, logical vein for a few minutes more. Tom bravely resisted reality. Then Nik came in.

'Ah, the cat has just phoned. He's sorry, but he really can't come. His mummy and daddy won't let him'.

And the crying stopped. Tom turned to me -

'He phoned me on his liccul phone', miming the cat reaching for a mobile on his belt.

The conversations with cats continue -

Not so NICE

2008-03-18T22:22:00.004Z

In December and January I drew attention to the publication of the draft recommendations on cochlear implantation from NICE, the body responsible for publishing the guidelines that steer healthcare spending in the UK. The first appraisal consultation document looked promising; bilateral implantation was being recommended for all pre-lingually deafened children as well as the deaf-blind and post-meningitic children. It was all coming too late for Tom, of course, but the future was looking a little brighter for many families.

Looks like we got ahead of ourselves there...

NICE have just published their second appraisal consultation document in which they back-track on this recommendation, explicitly dropping pre-lingually deafened children from the list of those deemed suitable for bilaterals and stating:

Bilateral cochlear implantation is not recommended for children and adults
(...) except in the context of research designed to generate
robust evidence about the benefits to functional hearing and health-related
quality of life of simultaneous or sequential bilateral compared with unilateral
cochlear implantation in those with severe to profound deafness who do not
receive adequate benefit from acoustic hearing aids.

And we were hoping, and campaigning, for a widening of the criteria to include post-lingually deafened children, who would equally benefit from improved hearing in the classroom, and adults. This is the UK's opportunity to catch up with the US and many other countries, display a little bit of common sense and act. What has caused this U-turn?

If you are in any way involved, or interested, please consider responding to NICE through their website. They need telling.

The illness - what happened next...

2008-03-14T19:06:00.003Z

Where did I leave you? Oh yes, with Tom running a temperature and us attempting to manage our tendency to expect the worst.

Well you'll be pleased to know that it all ended well. Tom got over his illness, life returned to some semblance of normality and we all caught flights to snowy Switzerland and a week's skiing.

This return to normality was not as straightforward as one might have hoped. It took us via a GP who wasn't taking any chances, a referral to A&E where we encountered an equally risk-averse SHO (and supervising Registrar) and an overnight stay for Tom and Nik in the all-too-familiar Queen's Medical Centre. That is one of the assorted legacies of a medical history that features a life-threatening illness and febrile convulsions.

One is not dismissed as an over-anxious parent. One is not dispatched with a slightly patronising suggestion to administer Calpol and leave it a day or two. Indeed, everyone is at great pains to reassure you that you've done the right thing and they would do the exact same.

As it was, it was just a temperature - Tom was bouncing around on his hospital bed the next morning in a manner that suggested he was well on the road to recovery. There had been no need to get that anxious. There had been no real need to instigate a chain of events that led to expensive rescheduling of flights and an uncomfortable, stressful sleepless night for Nik - one that, coincidentally, featured the UK's largest earthquake for many years.

An alarming, terror-inducing portent of something much worse... that passed very quickly and
is all but forgotten now.

The same goes for the earthquake.

So what will happen next time Tom gets a temperature? Will we cope a little better? I don't know. If anyone has any strategies we'd love to hear them.

One thing that reassures me is looking at pictures like this, taken a week after this little drama.

Can you be too careful?

2008-02-25T20:04:00.010Z

Tom's sick.

His temperature started climbing a little yesterday after a few days of growing grumpiness. We initially put it down to the pre-school vaccination booster he had last week but, after a rough, sweaty night and a morning of lethargy, stroppiness and complaints of stomach pains, we called the GP.

All known logic told us that this was just a bit of a bug - Calpol and Nurofen brought the temperature down and perked the little guy up enough for him to complain about his cars not being parked JUST SO. We managed to keep his temperature down like that a couple of years ago too - look where that got us.

I kept reassuring Nik that it was nothing to fret about - I have fully adopted that gender stereotypical approach, seeking to pacify and play down at all times.

I did that one night a couple of years ago too.

In short, any parental instincts we had with regard to extent of illness or magnitude of emergency are pretty deeply undermined. It isn't as bad as it was but a slight temperature shouldn't leave one of you crying and the other scouring the internet for obscure diseases.

Perhaps there is some hope for us though. I haven't completely forgotten being a kid... and because I now need to be extra sure (and to reassure) I can't just let him lie back in front of the TV. I have begun to suspect that young Tom is not completely without guile. If he's being asked if something hurts, he will find a couple of imaginary grazes that require a plaster or prehaps the need for some restorative ice cream for internal aches and pains.

So we pitched his tent in the living room and sure enough, Tom had the energy to grab his sleeping bag, pack his rucksack with his torch and giraffe and make like a camper, all accompanied with his usual, excited running commentary. And there was a little relief from the anxiety and the past could be returned to its rightful place once more.

Tom's asleep now. He's running a little too warm still and I'm afraid Nik won't sleep well but he's going to be OK. Deep down somewhere, we think we know that.

2 ears 2 hear

2008-01-29T21:31:00.002Z

I made contact with Charles Arthur soon after Tom came out of hospital - his son had a cochlear implant around the same time as Tom and it is great to read about the progress he's making. Charles' wife Jojo Moyes has written a piece for The Daily Mail supplement that is well worth reading - 'How Lockie broke through a wall of silence'. I hope you don't find the paragraph that follows the piece too alarming - I'm not sure about the relevance of the 'downstairs security check'.

On a slightly more self indulgent note, I've been contributing to getting a website off the ground that may be of interest to cochlear implant watchers. Hatched last summer as an attempt to get a few things out in the public domain about bilateral implants in time for the outcome of the NICE evaluation, 2 ears 2 hear has been launched. Written in conjunction with another parent of an implanted child, the website has a number of intentions: to support parents in their efforts to get what is best for their children from their PCTs, raising the profile of the issues surrounding bilateral cochlear implantation and to put some pressure on decision makers in the run up to the final publication of the NICE recommendations.

NICE kind of beat us to it with the publication of their draft recommendations last month but there is still a few months to go before the final report. As I've written before, if these recommendations had been in place when Tom was deafened, he would have qualified under two out of the three published criteria. We believe these recommendations don't go far enough. With them as they stand there is tacit acknowledgment that two implants are better than one but the additional cost of the second operation appears to tip the cost-effectiveness balance along with the gradual decline in likely effectiveness that is associated with failing to stimulate the auditory nerve.

Tomwatch update

Two weeks in and nursery school is still pretty appealing. We have had our first taste of on outcome of parenting a school age child - we only know as much as Tom is prepared to tell us... and that is highly variable. And often seems to deviate from reality.

A recent visit from the physiotherapist confirmed what we were suspecting - Tom is making excellent progress. He is far more stable and physically adept in terms of his gross motor movements (hark at the scientific terms) and becoming gradually more confident with a range of activities. The question I always ask is 'how far can he go?' and, like most of the questions we ask to professionals, it is met with a much qualified, carefully phrased 'don't know'.

What can be said though, and this saddens me however frequently it needs mentioning, is that Tom would be making far less progress if we had taken the NHS approach and accepted well enough.

The unfortunate impact of 60s musicals

2008-01-22T21:56:00.000Z

I mentioned the Chitty Chitty Bang Bang obsession didn't I? It has coincided with Tom's increasingly imaginative and witty approaches to acting out what he sees on DVDs and in books. This evening, the sophisticated routine he has created for the theme song - toy steering wheel on pushalong bike while driving in circles mouthing the lyrics - was preceded by a vibrant, energetic interpretation of Dick van Dyke's finest three minutes. Tom's performance was subtly enhanced by the fact that he performed the number dressed only in his vest, processor harness and Nicky's lilac beret.

Luckily for his future mental stability and dignity I did not have a video camera to hand at the time. It didn't take much to persuade him to perform an encore however...

The Old Bamboo from Jason B on Vimeo.

Weekend Movie Double Header!

2008-01-11T20:05:00.000Z

Have I got a treat for you this weekend! Treat it as my humble attempt to make amends for the recent paucity of entries.

The first video is a 'little chat' I had with Tom the evening after his first session at nursery. I am competing for his attention with a pack of Snack-a-Jacks ('a sane snack in a mad world!' - no, really) and probably come off second best.

There's this whole discussion that comes up about having his photo taken at school. I think Tom has ignored the question and is making a slightly off the wall suggestion. It turns out he did have his picture taken at school...

Interview about nursery school from Jason B on Vimeo.

The second, and far more interesting, video is where Tom has taken control of the camera. I love his questions to me (is that how I sound? - the teacher from Peanuts sounds positively eloquent in comparison), his focus on his 'car' and his giggles. They get ya every time...

The birth of an auteur from Jason B on Vimeo.

A brief introduction to Christmas

2008-01-03T17:54:00.000Z

This is Tom's brief Christmas interview. A few things to note that might help with understanding:

We were at Granny's house
Annabel had a metre-tall internally lit model Santa in her garden. We went to see it on Christmas Eve and I 'did' Santa's voice while Tom checked that he'd got his order right. I wasn't out of sight of and did nothing to hide my mouth... Tom seemed pretty convinced.
Tom got lots of other things as well as the garage and the mini however he'd had to stop unwrapping pretty early in proceedings. He announced he had a tummy ache and went for a quiet story on his uncle's lap. It may have been the excitement. Then again, it might have been the heady cocktail of chocolate and sweets for breakfast.

Tom explains Xmas from Jason B on Vimeo.

Last man standing

2007-12-20T19:12:00.001Z

In parallel with all of Tom's successes and developmental achievements over the past 18 months another story has been unfolding. As Tom's every achievement has lifted us further away from the desperation and hopelessness we felt in April 2006, our celebrations have been tempered by the ongoing struggles with the Primary Care Trust (PCT; the local branch of the NHS) around funding. In a partially successful exercise in self-therapy I avoided the subject here - I fought hard to get you regular readers; the last thing you needed was me harping on about how hard done by Tom was when there was obviously so much to be grateful for.

That wasn't the only reason I refrained...

Way back in August 2006 when we first appealed against the PCT's decision not to provide simultaneous bilateral implants a print-out of this blog appeared in the papers distributed for the appeal hearing. I don't think Nottinghamshire PCT's budget stretches to a full-time 'blog-watcher' (jeez, I sincerely hope not - that would be one irony too many) but I didn't want to risk any chances we had of securing some sort of funding result by bad-mouthing the Chief Executive on a daily basis here.

The situation has moved on and my mood of restrained optimism has moved with it so, at the risk of being repetitive, let me give a brief resume of events to date so as to put the latest news into context.

Tom contracted pneumococcal meningitis in mid-April 2006. About 24 hours after first displaying symptoms we now know to be the onset of the illness, our local GP sent us home suggesting he had a tummy bug.
After Tom's profound hearing loss was diagnosed he was rapidly referred for cochlear implantation. The implant team asked the PCT for simultaneous bilateral implantation. The East Midlands Commissioning Group said no - he could just have one even though the recommended treatment for post-meningitic deafness was bilaterals all the way.
Tom had his first implant on 15th June and was activated a month later. We initiated an appeal against the PCT's decision not to fund simulataneous bilaterals. The appeal date was set for 1st August 2006.
Our appeal to the PCT is rejected on the same day that the Times report a successful outcome elsewhere in the country. We initiate the complaints process with the Healthcare Commission - the outcome is not expected for 4- 6 months.
Also in August, the National Institute for Clinical Excellence (NICE) began their technology appraisal of cochlear implants. The scope included the cost effectiveness of bilateral implantation. They are scheduled to report their recommendations in April 2008. NICE recommendations effectively dictate spending policy across the country. It is in their absence where PCTs are left to their own devices.
September 2006 and vaccination against pneumococcus - the bacteria that caused Tom's meningitis - is included in the national immunisation programme. It has been drastically reducing cases of meningitis across the western world for some years - not in the UK until this date though.
Given the risk of ossification, we decide to proceed with a second implant for Tom, opting to pay for it privately. This takes place on 23rd September 2006. Throughout this period we read about, and speak to, numerous families going through the same process. Some are successful, others are not.
In April 2007, a family in neighbouring Derbyshire were successful in their appeal for bilaterals for their 10 year old post-meningitic son. Because of the similarities to our case, and as our counties share a common policy, I felt it worthy of a mention to both the PCT and the Healthcare Commission who were 7 months into their investigation.
The PCT informed me that they weren't about to change their decision. The Healthcare Commission were a little more polite and added the information to the pile, thus extending the investigation by another four months.
August 2007 and the Healthcare Commission send us a long and rambling letter addressing each of the (many) objections I had made to the PCT's appeal decision a year previously. The upshot was that the PCT had been perfectly at liberty to make the decision they did. The Healthcare Commission doesn't question policies - just that you've followed them correctly.
During the summer our focus shifts from Tom's language development - which was (and still is) racing along - to his balance and coordination. It becomes evident that the legacy of the brain damage suffered as a result of the meningitis is greater than we originally thought.
The arrival of the bill for the second year of Tom's care for his 'private' implant spurs us into throwing ourselves against the brick wall that is the PCT one more time. We write with the assumption that recompense isn't likely and request that they take over the aftercare of the second implant - an annual cost of around less than £3000 for the next two years and less than £2000 after that. The case is referred to the Individual Case Review Committee, an august body that will only accept submissions from clinicians, who will hear the appeal on the 13th December. We talk to our implant team, community paediatrician and GP (family doctor), all of whom make strong cases on our behalf.
They cite his additional needs due to the meningitis, a powerful (and terrifying) example of which was published this year, as well as pointing out the unusual stance that Nottinghamshire PCT were taking given national trends.
Guess what? They turned us down again. It isn't the NHS's responsibility to take over the care of a privately funded procedure. Forget everything else.
Today, NICE published their Appraisal Consultation document - essentially their draft report.
They recommend, and I quote:

Simultaneous bilateral cochlear implantation is recommended as an option for the following groups with severe to profound deafness who do not receive adequate benefit from acoustic hearing aids as defined in 1.3.

prelingual children
children and adults who are registered as blind
children and adults who are at risk of ossification of the cochlea (for example after meningitis).

which - if I read it correctly, would give Tom simultaneous bilaterals on two out of the three counts.

I have yet to ask the PCT what they make of it for fear of using up one of my 'lives' (I can ask the Case Review panel to take another look and appeal that if necessary). My pessimistic fear, and I think you might agree that I have grounds for this, is that the PCT will treat this news in isolation, state that it only applies from the date of publication and retrospective 'tidying up' is out of the question. You have to hand it to them. Each decision, without considering the whole case, the context of national trends or research, has been defensible. They haven't broken any rules.

The point I'd like to leave you with is this. I had a chat with the coordinator of CICS a night or two ago. She has knowledge of the vast majority of implantees across the country, logging their circumstances and status re: uni/bilaterals.

She couldn't name one other post-meningitic child who has not had PCT-funded bilateral implants over the last couple of years at least. We've tried to find them to compare notes - it's what you do in this club.

Do you know where they are...?

Eat yer greens!

2007-12-14T21:11:00.001Z

This one is for Heather.. .although I expect some interest from the Broccoli Marketing Board.

We take vegetable eating very seriously in this house...

All I want for Christmas is... Cheese.

2007-12-14T19:24:00.000Z

'What do you want for Christmas Tom?'

'a garageandamini'

The desire is firmly engrained - he shows no sign of wavering and besides, the letter's in the post already.

Tom also has an advent calendar. It's pretty fancy as it was fashioned by his Granny, blessed as she is with a surfeit of embroidery skills. It has 24 rings to which are attached presents for every day of advent. It was in action last year too (and the year before come to that) and Tom certainly remembered its function when it made its appearance at the start of the month.

The routine was quickly established - down in the morning and straight into the present of the day. after a couple of early negotiation attempts, Tom has grudgingly accepted the formula:

'I want to open another one!'

'No it's one present every day'

'No its two every day!!!'

Nooo - just one...'

etc.

He's a pretty good kid and hasn't given in to the temptation. This maybe because, two weeks in, he's learned that quantity doesn't equate to quality and, quite frankly, waiting until the morning for 3 jellybabies or a small toy is no great hardship.

On a number of evenings he has shown great interest in the present at the bottom of the calendar - the one that awaits on Christmas Eve. Tonight, apropos apparently nothing, Tom informed me it was Christmas Eve. Strong assertions of this type are pretty common at the moment and he wasn't to be dissuaded.

'It will be soon... not tonight though...'

'It is!! It is Christmas Eve!'

He then went over to the bottom gift and gave it a little squeeze, his curiosity rising to the surface again.

'It's quite hard... It's cheese!!', clearly quite excited at the prospect.

'Can I taste it!!'

Have we managed to lower his expectations that much? Maybe he'll actually be disappointed when he unwraps the wooden box of animal dominoes...

I'll let you know.

Language for all occasions

2007-12-05T06:47:00.000Z

After dinner last night Tom started experimenting with coil removal. At first he was taking just one off.

'Can you still here me Tom?'

'I can hear you a little bit...'

Once he's got our interest they both come off and, after some pretty impressive lip reading and they coils are restored to his head I ask

'Why did you take them both off?'

'Cos I'm crackers!'

His mummy has been teaching him some useful language.

Big Days

2007-12-03T20:35:00.001Z

I think I'm a blog refuser. It got to the point where, just like with thank you notes after Christmas, it had been so long that it was almost ruder to post than not. For any of you who haven't become disenchanted with the lack of action in these parts, thank-you for hanging in there. I got caught up with the day job... still am in fact but I'm experimenting with multi-tasking. Not sure if I'm going to be any good at it but I'll give it a shot.

The big event of the weekend, in the star-struck eyes of Tom in particular, was the all-to-brief visitation of 'Uncle Bungle Dave'. Nik's brother has near-mythical status, enhanced by long distance and, ever-so-slightly-enviously, rarity value. Here are a few key indicators of the extent of the affection, through the mouth of the little one...

'Uncle Bungle's Train!!! Uncle Bungle's Train!!!... Hide!! Hide!!'

'Dave is a funny man!! Dave is a funny man!!'

'I want to wee with Dave.. I have to' (there follows 5-minute meltdown until Dave concedes and 'pretends')

'Who's reading your story tonight?' 'Dave!! Not Daddy (a little too emphatically)'

'Can Dave sleep with me tonight?'

You have to rely on your inner strength when you're a daddy don't you? I thought I could expect a longer period of grace as the unassailable favourite but my stock has fallen.

So soon, so soon.

TV time again

2007-11-06T16:14:00.000Z

For those of you in the East Midlands area of England (as defined by those fine folk at the BBC) Tom and I will be making an appearance on your TV screens tonight.

East Midlands Today runs from 6.30pm and Tom was looking, and being, so darn cute that I wouldn't be surprised if the whole show wasn't just an endless loop of him. I understand that owners of the finer satellite systems can choose which region they watch and the show is available on the internet for 24 hours after broadcast. It'll probably be somewhere around here.

UPDATE

You'll have to take it from me that there were lots of cute shots of Tom bothering the cameraman and ramming his legs with a toy car... ah well...

You've got until around 6.30-7pm GMT on Wednesday 7th to see my insightful contribution to the national debate on bilateral cochlear implants - as I thought, its available on the BBC East Midlands Today webpage - it even has it's own link 'Fight for cochlear implants'.

The main thrust of the story is, as it should be, Mike Batt and his family. Mike was the first child to be implanted in the UK - back in 1989 before the NHS would fund and in the face of much opposition from the deaf community. He's got his first class honours degree and is off making his contribution to the national coffers - paying the state back for... oh.

You'll have to take it from me that I said lots of erudite things that didn't make the cut - powerful arguments exposing the ridiculousness of the funding lottery etc. etc. You might be able to imagine how much I spewed forth (if you've delved into these pages at all). I also said a number of things that, out of context, might not hold much water so I'm kind of glad they didn't get out...

I was a Dr Seuss self-starter

2007-11-06T09:04:00.000Z

Last night I read ‘Green Eggs and Ham’ to Tom for the first time. I don’t know who enjoyed it more… well I do actually. I don’t come from a Dr. Seuss kind of family and never experienced the Cat in the Hat, the Grinch or Sam-I-Am until my own adulthood when I fell in love with the well-crafted rhyming nonsense. I have a few of the books kicking about the place and have been a bit slow in introducing them to Tom. Last night we rectified that.

My, did I (green) ham it up. While I write this I have a growing sense that last night may not be the first time I have read this story out loud. Vague recollections of ranting about foxes and boxes to myself are surfacing as a timely reminder that three years of working from home is quite enough and a gradual reintegration into society is somewhat overdue.

Tom was enthralled. The presence of cars, trains and boats in the story can only have helped but there’s no doubt that the slightly manic enthusiasm shown by daddy sucked the audience in. Heck, Nik even wandered in to see what all this loudness was all about.

‘You do NOT like what anywhere?’

As parents we stack up our series of personal hopes and expectations for our offspring – often partially concealed behind the genial catch-all of ‘wanting him to be happy’. Nik always said she wanted a boy who was ‘just a little bit naughty’. I plan to share that one with the little guy at some point – probably just after he’s been despatched to the naughty step.

Slight tangent – but on topic – a ‘mummy and Tom’ day last week led to Tom learning the very useful and oft-repeated ‘I’m driving you crackers, I’m driving you crackers’. Piece together the events that led to that little gem if you will.

At risk of showing myself up as the geeky half of the relationship, I always placed ‘Sharing my love of books’ near the top of my list. Nik counselled me about ‘overdoing it’, reminding me of her own near-allergic response to museums, galleries and classical music and I tempered the urge to buy a set of Penguin Classics for Tom’s first Christmas.

So we mix up the daily routine with the wonder that is Pixar, charging around the garden, and cars. We let play wander wherever the whim takes us and fill our days with castles and towers and tunnels and garages. We take to pretend stages and sing the same line of songs over and over. Days vary and take imaginative leaps this way and that but they all end the same way. Me or Nik with Tom and a book. After the story is read and the songs are sung, the book is tucked down by the mattress and the lights go out.

In the morning we sometimes find the book crumpled and thumbed somewhere in bed – Hairy Maclary often has this fate. One night, checking on Tom, we found him asleep on his back with the book folded open across his chest in a pose curiously reminiscent of his grandfathers.
This morning was best though. This morning I opened Tom’s bedroom door to find him poring over ‘Green Eggs and Ham’ by torchlight. Even though light spilled in from the hallway he wasn’t about to interrupt his reading by paying his dad any attention.

I think we have a Dr Seuss fan.

Running Commentary

2007-10-25T18:11:00.000Z

Things aren't anywhere near as gloomy as that last post really... I shouldn't have left it so long, sitting there atop this blog. What will people think they've wandered into?

For the vast majority of the time, Tom's story is one of normal development - astounding stuff considering the 'wee setback'. He thinks everything is so great that you can't help but find yourself agreeing and then, of course, there's the running commentary...

It was around this time last year, maybe a little earlier, that Tom's Granny made a typically apposite comment about her charming loquacious grandson. On returning from a car trip with Tom, she said it was 'just like driving with my mother'. I'm not sure she meant it entirely kindly but, lets be honest, it ain't so different.

'Oh look, a van'
'And there's another one'
'Its a roundabout. The traffic lights are gone now'
'Look there's a digger'
'That's where Chris's party was'
'That was a lovely shoe cake'
'The traffic lights are red. That means we have to stop.'
'That's a Corsa. Just like Granny's but Granny's Corsa is blue'.
'Oh look, another van'
'There's one two three vans'

This habit shows no sign of abating and has grown into obsessive monologues and the dexterous steering of conversation round to subjects of interest. There are also blunt changes of subject when the topic wanders away from key matters.

Not a day goes by without the following topics being covered:
'A short precis of the houses and cars I can see from the dining table' - length varies according to how interesting dinner is.
'Where Ruddington stops and Clifton begins'
'Going to Grandpa's house and Grandpa's cars' - this is a lengthy one because of the number of cars at Grandpa's and the journey's endless possibilities involving aeroplanes, cars and, possibly, boats.
'Chocolate money' - a nutritious foodstuff that has caught Tom's imagination and would almost certainly, according to him, make a perfect breakfast.

We're getting our money's worth out of these implants.

So that mostly covers what's been going on chez Tom over the past couple of weeks. There were a few days following the physio's visit when Tom morphed into a fragile convalescent but reality crept back into view. By lucky coincidence, a week or so after the visit, I met the parents of Mike and that put many things into perspective.

This is Mike - since this was written he has graduated with first class honours in Design and Technology for Industry and has now started his first job. Mike was the first child in the UK implanted - 1990 if my calculations are correct. This was a time before the NHS recognised they might be useful and certainly didn't pay for them. Simply put, Mike and his family have hero status as far as we're concerned.

When you're in the CI club you just need to share and devour each other's experience. We've gleaned so much from other families and, I guess, passed quite a bit on ourselves but nothing compared to what the Batts have to share. All the imponderables about Tom's future that float to the surface in the dead of night - this family have lived through them, dealt with them and moved on. No two children are the same... I know all that... but the many questions about the experience of 'being the kid with the implant'; the business of living and growing with this thing were what I wanted to ask.

And the Batts indulged me. They painted the picture of (an approximately) the normal, 'whole' childhood, adolescence and young adult life that we now know is coming. Riding a bike, driving a car, drunken teenagers and girlfriends; its all there as it should be. I came away grateful and reassured. I relayed the conversation as well as I could to Nik who, as is her way on occasion, found bits to worry about. Luckily she now has a blog of her own to share some of these things with all of you. She's at http://dropoutmum.blogspot.com/ - and she's great so go read!

So we're back in a better place again. Thought I'd better let you know.

National Healthcare (abridged)

2007-10-11T18:13:00.000Z

There has been a soupcon of emotion around these parts over the last day or so, much of it stemming from an appointment we arranged for Tom yesterday. In the context of the appointment we didn't find out anything that we didn't suspect already but the act has been the equivalent of merrily flicking the scabs off a number of old emotional scars that Nik and I like to keep to hand.

The appointment was with a children's physiotherapist who specialises in assisting children who have suffered brain injury.

There's scab number one right there.

Ever since the darkest days were pushed behind us and we were no longer waking to find that Tom was still in a coma, the small matter of the lesions that revealed themselves on Tom's MRI ('felt to be secondary to meningitic end arteriolitis') had been placed carefully to one side. The horrific imaginings that we had tortured ourselves with following the ICU consultant's carefully worded explanation had simply not come true. Although profoundly deaf, Tom was unchanged in terms of intelligence, character and capacity to speak. Within a couple of months he was walking on his own again and nagging fears there were abated. He was the same boy.

But yesterday's appointment brought it all back. The physiotherapist's assessment was that yes, our friend Deborah was on the nose with her diagnosis and Tom has some core stability issues which he does his level best to accommodate and conceal. There is also a degree of hypotonia - or poor muscle tone - which wikipedia identifies as a possible outcome of meningitis, presumably because of damage to the area of the brain that coordinates skeletal muscle.

As I said above, this isn't really news although it does shed a different light on how we move forward. Up until now, as is obvious from this blog, the focus of our attention has been Tom's hearing and his learning to make the most of his cochlear implants. His progress with these has, and continues to be, outstanding. Now we must help Tom in whatever way we can with this challenge.

There is another old wound that has been opened by these events though... Linda, the physiotherapist who came and assessed Tom and is starting to work with us on exercises and games to help him? She's a private physiotherapist.

Tom made two outpatient visits to the children's centre for physio before he was discharged over a year ago. He had only been walking again for a couple of months and was much more unsteady than he is now. Yesterday we discussed the prospect of getting Tom re-referred in the light of her assessment but Linda, a former NHS physio herself, suggested it would be pretty unlikely that he would be regarded as a priority and seen any time soon.

Well that felt good and left us in good cheer...

I must state again that we are eternally grateful that we still have our son. To the doctors in A&E who quickly diagnosed the meningitis that our GP had missed, we thank you. The doctors, nurses, OTs and physios who cared for Tom (and us) through that three week period - you are all wonderful, dedicated people who gave our son exemplary care and started him on his road to recovery.

The cochlear implant team at Nottingham had Tom on the operating table within 8 weeks of losing his hearing and switched on in twelve - incredible work that set up the success story that is our son's language development since.

But it is beyond this acute phase of Tom's treatment that the cracks show and the hurt begins.

I used to be a big fan of the movie and TV series M*A*S*H. Beyond the political references and marvellous satire, the depiction of doctors doing heroic patch-up work as rapidly as they can has stuck with me and is brought to mind now. Whether it be the budgetary constraints, competence or lack of will, there seems to be a point where a patient is considered 'patched up' and 'well enough' to be dispatched back to the trenches. Presumably the necessary target has been met and that patient adds no more value to the hospital or PCT's ratings. Whatever the reason, it is too soon.

Tom was considered 'well enough' with one implant and 'well enough' with a degree of hypotonia but is he? It is patently obvious that more could be done as we have found. Through the generosity of a charity, family and friends (and the fact that we have good jobs) we have been able to do more - to continue Tom's recovery.

And the main reason? Because we've got enough money (just).

Enough to pay for a second implant, enough to pay for Auditory Verbal therapy and now we will find enough to pay for private physio.

This isn't a case of parents making exaggerated requests for superfluous treatments because they regard their child is special in some way - these are obvious needs identified by respected professionals... and turned down by others.

I don't have an answer for this... I recognise that the vast majority of health professionals we have been in contact with would have loved to carry on Tom's treatment but thinly spread resources just won't stretch. What I hate though, is the inherent waste, the failure of processes, the inconsistency of provision and the deceit.

Something has to change because this isn't quite right.

Mummyless weekend

2007-10-09T05:50:00.001Z

'Ok - lets show Mummy that you didn't survive on chips, sweets and biscuits all weekend'

'Don't just store in in your mouth - swallow it!'

'And smile... yes, the apple looks good'

'Now show mummy that we miss her terribly'

When Mum's away...

2007-10-06T20:53:00.000Z

Tom and I are having a boys weekend. Nik has gone to visit a friend in Sweden leaving me and the little guy to do what boys do when left without the influence of the wiser and tidier gender.

So what have we done? Well, have lunch in a pub (or 'cafe' as Tom refers to any location where food can be purchased), watch the rugby and finally slump in front of a favourite DVD while stuffing our faces with sweets.

Is that so wrong?

As far as his mother's absence is concerned Tom thinks it has one purpose and I've had to remind Nik on the phone to avert potential disaster. He is expecting a yellow present and he expects me to receive a red one. Where did he get this idea? Who knows but there might be tears before bedtime tomorrow.

A Tracey Day

2007-10-05T18:56:00.000Z

'Not a Karen Day?' Tom inquired over breakfast.

'No it isn't' I confirmed. Karen days are fine (Karen being Tom's adored childminder) he just likes to know what's coming so that he can adjust his list of demands accordingly.

'Its a Tracey day!!' - Tom suddenly remembered what we'd been talking about yesterday evening. It has been a while since we've visited the implant team but Tom hasn't forgotten the drill.

'I say to Tracey 'Can I play with your cars please?' and Tracey says to Tom 'Of course you can'' Tom rehearsed this opening speech a few times before we got there and I scripted a few extra bits such as 'It might be nice to say hello first' while hoping that Tracey didn't fluff her lines.

I needn't have worried. Tom adores audiology sessions - these people with their fancy room, computers, loudspeakers and all those wonderful games. The simple truth is that it is evident to the audiologists (only one of whom is called Tracey. Susan sits in the booth doing her bit without getting any of the glory) within a minute of us walking in that everything is just fine. Despite it being close to six months I would guess since we were last there, Tom is immediately at ease and rabbiting about every aspect of the day thus far that has caught his attention.

The session involved a variety of tests on both ears and Tom concentrated for pretty much the full two hours although he was unable to stifle a yawn towards the end and we began to suspect he was sabotaging the exercise a little. The results were, however, fabulous. Tom is hearing down to the 30db level and is differentiating between similar sounds heard through a loudspeaker - 'horse/house', 'cup/duck' and the like.

I've said it before but its worth reiterating - these implants are an utter marvel.

Our route home took us past the hospital where Tom was admitted with meningitis and where we all spent those long tortuous days and weeks, not knowing where any of it would end or what we could hope for. I don't plunge into any kind of regressed depression when I pass there these days which is a good job considering how frequently we are nearby or visiting. I do think back though.

'That's Mr Twigg's hospital!' shouts Tom and I chuckle with a degree of relief. I'm sure Mr Twigg will be surprised to hear that it's his hospital but it'll serve for us. Mr Twigg is Tom's orthoptist - he has lots of funny toys he puts on the end of pencils that light up. We visit his clinic frequently for delightfully non-invasive, utterly routine tests and if that's all that comes to Tom's mind when he sees that hospital then its more than alright with me.

There doesn't seem to be any recollections of events such as these. I hope it stays that way and that when he reads what I've written here it will seem like a slightly scary thing that happened to someone else a long time ago. He is starting to become aware that he has 'special ears' and we are building his understanding as carefully as we can but the sad stuff that got him to that point is for us to carry and protect him from.

Apologies for the slightly reflective tone at the close - in the midst of the brightness that Tom's astonishing progress continues to be there will always be these reminders.

Tom media watch...

2007-10-02T11:23:00.000Z

A few news sites and programmes carried pieces about the Countess of Wessex's visit to the Ear Foundation. The longest piece I've seen is on the Deaf Blog - if you're interested in that sort of thing and wanted to check that I hadn't just been photoshopping!

A Windy Day

2007-09-27T22:11:00.000Z

Tom has had some bad gas recently…very much into skunk territory. He is, obviously, pretty proud of this and, being a boy, probably always will be. We have only ourselves to blame of course. His intake of baked beans has been disproportionately high of late and so, as parents, we must shoulder the blame for any minor offence our little stinkbomb has caused.

I extend this apology particularly to the Countess of Wessex who had the pleasure of meeting Tom on Monday. We were invited to be part of a gathering of implantees and their parents at the Ear Foundation when the Countess visited. She is a trustee of the RNID and had expressed a keenness to meet young deaf people – so she got to meet Tom amongst others.

I sincerely hope that she was appropriately stunned by the children she met and loudly broadcasts what is one of the most astounding advances in medical technology of recent years. I have a mild concern that, when sharing her memories with Prince Edward over dinner, she may have had cause to recall the pungently aromatic three year old and his verbally incontinent father but I'm sure the recollection won't spoil their dessert.

As you might have gathered, Tom didn’t show himself in quite his best light. That’s what an hour’s hanging around waiting and inquisitive strangers do to a boy (and a diet rich in pulses). He did attempt to get the Countess' attention by launching his car across the carpet at the Countess’ party handing Nicky a tricky parental dilemma –

‘will scuttling forward on my knees to retrieve said car before the Countess trips over it be construed as over-enthusiastic deference, a security breach that’ll get me pinned to the carpet, or a selfless act to prevent a heavily pregnant royal person taking a tumble’?

Well what would you do?

Luckily one of the entourage came to the rescue and ensured Tom wouldn’t grow up visiting mummy in prison.

Shortly afterwards Tom had his chance to redeem himself when the Countess (I want to call her ‘Soph’ – it’s how we know her at our house) made a beeline for him and initiated a discussion about cars. A smart move under normal circumstances but Tom came over all star struck. He did, reluctantly and monosyllabically, reveal that the blue car was, indeed his favourite but was unwilling to be drawn further.

That was until Soph was long gone and the speeches had started.
‘I want to talk!! I want to talk!!’
‘Don’t shush me!!’ (thank you Madagascar )
And repeat…volume inversely proportional to parental effort to reduce.

We’d run out of ‘incentives to comply’ due to the long wait and, anyway, kind of enjoyed the anti-establishmentarianism of it all. It’s probably tied in with his having long hair – he’s hit his student protest years a little early.

Being an awkward little cuss is what being three is all about of course and besides, when we’ve worked so hard to enable him to speak what on earth are we doing telling him to ‘shush’? And therein lies one of the dilemmas of parenting an implanted child. Social etiquette versus a celebration of the fact that 'yes, our son can talk!'. There's no contest really.

Do you think Tom watches too much TV?

2007-09-18T19:38:00.000Z

I've been lax, I've been busy, we've been on holiday and blogging just hasn't made it up the priority list for a few weeks. That's just the way it goes sometimes.

That's not to say things have been uneventful - far from it as anyone parenting a three year old will only be too aware. If you have a read of finslippy's open letter to five year olds you'll have a rough idea of where we are at.... which of course is utterly perfect in a tiring, perpetually astounded way.

The whole roleplay thing has expanded to encompass nigh on every waking minute. I do not jest. This is combined with the challenge of remembering which particular script we're following at any given moment. Actually, that's a lie. They all involve being chased and hiding, regardless of the cast.

But I don't get to be Shrek much any more - Tom has decided he makes a much better hero. Even when the (oh so frequent) running away and hiding from the dragon scene has been reshot to death we'll look around and catch Tom silently putting on his invisible armour and sliding his pretend visor down over his face. I hope the day when he's embarrassed that we've caught him doing that is far, far away.

(I hope the day he's embarrassed that we've caught him playing with his winky yet again is a little closer but that's a story for a different time.)

So I spent long periods of our French vacation being Shaggy to Tom's Scooby (the hire car was instantly and permanently named 'The Mystery Machine' although I defy you to find a similarity between them.)

There was also the occasional Spongebob/Patrick double act (more often than not I arrived late to this one and got the rather 'down the billing' part of Squidward. Not that it mattered as far as the chasing was concerned of course.

The only respite from the chasing came when Tom played fast and loose with gender specifics and assumed his Maisy persona. For reasons the director has yet to share with me, I became Eddie the Elephant . In Tom's interpretation of this marvellous set of books this meant I had to do everything he did; ride on his imaginary bus and, much to the amusement of numerous Dutch families in the park, paint the play house with imaginary brushes.

In retrospect I should have had more foresight and explored my role further - maybe come over all method and not relied so heavily on the direction. In contrast, despite protestations by Maisy about this flagrant improvisation, Nik played the Little Black Cat very straight and simply lay in the sun. I know where the genius lies in this family.

Dance to the Music

2007-08-24T08:11:00.000Z

Tom has found his singing voice. He chose his own improvisational microphone too, somehow innately understanding what would best serve. This is only one of a number of odd nuggets of understanding that Tom appears to have been born with, the most noticeable of which is his grasp that putting a box on your head is always funny.

There are no box-on-head moments in this clip. Just singing.

Dance To The Music from Jason B and Vimeo.

Of bedtime and lullabies

2007-08-17T18:24:00.000Z

Every time I put Tom to bed I recall the short weeks of unhearing bedtimes. I don't dwell on them - its more of a fleeting thought - but its there.

While Tom was in hospital, recovering from the meningitis that deafened him, we re-established his routine as quickly as we could. We felt, rightly or wrongly, that the restoration of any normality, however small, would reassure our desperately weak and sickly son.

Who am I trying to kid - in those early days it was as much for us as it was him. 'Things will be normal again' we told ourselves, sternly just in case we began to doubt it, and that included the bedtime routine. Since Tom was a few weeks old this had been the same: a story followed by a well established medley of 'Twinkle Twinkle', 'Baa Baa Black Sheep' and 'Row row row your boat' (the crocodile version) and finishing with his lullaby-playing music box. We knew he couldn't hear us but we felt it vital to carry on regardless. Stifle the tears and emote the songs with all our hearts. Switch on the dim light and soothing bubbles of the music box and hope that the visual stimulation went some way to filling the gap left by the absent tune.

More than a year on and the basic routine hasn't changed a jot. Tucked up in the Racing Car Bed we read a book or two (current favourites include Hairy Maclary and The Smartest Giant in Town), discuss how nice Tom's swamp is (the whole Shrek and Donkey thing shows no sign of aging), and then sing.

Occasionally we try and get Tom to sing the nursery rhymes to us - he knows them inside out. The best I ever get is:

'Twinkle twinkle little star,
howiwonderwhatyouare,
that's enough daddy,
its my turn now'

Clearly the last two lines don't scan as well as the original but its creative. We finish with a lusty scream after which Tom whips his coils off and I count my blessings.

It could have been so different.

Careless talk...

2007-08-13T06:52:00.000Z

We were discussing Tom's love of lazing around on weekend mornings. Nik and Tom had made it downstairs by about 10. I had been up a little while longer, indulging my passion for masochistic labour by laying floor tiles in the kitchen. We were in agreement that such tendencies on the part of our son were only to be encouraged, untouched as he is by the guilt that seems to afflict me whenever I attempt to laze around.

I made some jokey reference to my Calvinistic attitudes and, somewhere a few feet behind me, a little voice piped up -

"Daddy say 'Hey protestant boy - get up!'"

quickly correcting himself

'Shrek say 'Hey protestant boy - get up!'"

That boy is going to get me into trouble one day.

As I write it has just turned eight on Monday morning. I've been at my desk nearly half an hour (not working, I grant you but the intention is there.) There's no sound from Tom's room. This is usual. Parents of young children, are you feeling the envy?

'I am Donkey'

2007-08-07T21:40:00.000Z

My son calls me ‘Shrek’.

It started out as impromptu roleplay after putting in some valuable (and educational) DVD time but has now evolved into something a little more substantial.

‘Daddy, you be Shrek. Tom-Tom is Donkey’ – the central casting was settled pretty early in pre-production and now, with Mummy being ‘Princess Yona’ (‘pretty Yona’ rather than ‘green Yona’ thankfully) and numerous other family members rotating the minor parts, we have a well-formed ensemble piece. We have tried to be sensitive around who gets to be ‘the Dragon’ but, inevitably, the odd grandmother has had to swallow any objection. He is nothing if not a forceful director.

Tom has become quite ‘method’ with regard to his part. He is tending to walk on all fours when the opportunity arises and demands to be patted. This has rubbed off on me. I emerged from the shower the other day with a surprisingly forceful ‘I’m an ogre!!’ (and accompanying growl) which the director decided, rather uneasily, was ‘quite scary’.

Tom now refers to our bedroom as ‘Shrek’s swamp’, much to his mother’s amusement (I’ve been wondering whether the whole Princess Fiona thing could be tipped the other way with a little prompting). Luckily he has decided that his version of Donkey likes to sleep in the racing car bed rather than on the floor of his personal ‘swamp’ although I’m fairly sure it has crossed his mind.

There’s no sign of this particular production being wrapped up just yet. I left the house before he woke this morning and got very grumpy with Nik when he discovered that ‘Shrek’ wasn’t available to ‘put his ears on’ for him. Donkey is very conservative when it comes to his routines.

So, while I’m not averse to stomping round the house burping and growling for a little while, I would like an opportunity to extend my range a little as I fear typecasting. Anyone any idea how long this might last?

I am Three!!

Following on from yesterday’s post, today (7th) is/was the long awaited 3rd birthday. Among Tom’s numerous declarations to me during a very sweet phone call this morning were:

‘I am three!’

‘Opening the Tellytubbies present!’

‘I got a big Lightning McQueen!’ (thus relegating the old ‘big Lightning’ to merely ‘middle-sized Lightning’ in the pecking order that now stretches to five. I hope he doesn’t demand to sleep with all of them).

And of course

‘Bye-bye Shrek’

So I was talking to my son on the phone. Tom was quite the chatterbox during the call and was responding to direct questions rather than parental prompting. And it wasn’t just with me. He wants to hold the phone like everyone else does, i.e. next to his ear rather than his coil, but with a bit of receiver holding from Nik he had quite the detailed chat with his grandparents and uncles too. Told us all a pack of lies of course, but that’s not the point.

We talked. On the phone.

'When its my birthday I be three!'

2007-08-06T18:27:00.000Z

This has been Tom's stock answer to the question 'how old are you?' for the past couple of months. Its also been his stock answer for a number of other questions too though, including 'What's your last name?' and 'Where are we going tomorrow?'... He knows that he has been told the appropriate response to a number of things - its just that sometimes people ask the wrong question.

He seems to have nailed the concept now. It has been birthday season for Nik's ante-natal class for a few weeks now and with each party the understanding that soon it will be his special day has grown. We went and confused matters by having a 'Hey, look how great Tom is' party last weekend. We made the foolish assumption that friends and family would understand that this wasn't a birthday party. Just because it was within 10 days of the actual birthday, had a party clown and a cake and people leapt to their own conclusions...

So now Tom knows his birthday is impending. He's nailed the fact that today he is two, 'tomorrow I be three', 'I will blow out the candles' and 'open the tellytubby present'.

Excitement levels are high.

A response to Fintan's comment

2007-08-01T19:16:00.000Z

Hi Fintan,

Here are my answers to the questions you posed in the comment on the post ‘Radio Shows that should know better’. I hope it goes some way to demonstrate that we did not pursue cochlear implantation lightly but that it wasn’t a difficult decision for us, or many other parents, to take.

Fintan's comment is in block quotes - my reply is in italics.

Hello,

Lets hear 2 sides to every story... ah well I cant join the debate.. no transcript.

You nearly lost your child through meningitis and your doing what you think is best for Tom after all you are a parent.

I would tend to wait till technology improve before implanting people .. but happily they do have guinea pigs.
The technology is progressing at an enormous rate - with his processors Tom is able to interpret the full range of speech sounds and is completely ‘peer appropriate’ in terms of his language skills. He sings, he shouts, he mimics. He has an array of 'silly voices' that he uses to make us laugh and get his own way. His voice is an incredible tool that he makes use of every minute of the waking day.
Considering the impact that meningitis can have on the cochlea in a very short time span (the fluid channels often turn to bone making implantation difficult or impossible) and the key language development phase that Tom is in, waiting was just not an option. Happily, Tom got to join the thousands of guinea pigs around the world and got to speak.

I have a few questions to ask is..

1) did you meet any implantee before Tom was fitted?
Yes, we met a number. None wanted to remove their implants.
2) were you aware risk of meningitis after having a implant?
We are only too aware of the risks of meningitis both with and without implants. We watched our son lie in a coma for four days and were told that he may not progress much further. The grand irony is that, in the UK, the vaccine that would have prevented Tom contracting the illness (and, of course, being left profoundly deaf) became part of the national vaccination program in September 2006; five months too late.
What you seem to be unaware of is that all children who are about to be implanted are given the meningitis vaccine too so any risks are vastly reduced.

3) Do you actually think that Tom will never get a job ,have family because of his Deafness?
What exactly is he missing out apart from not hearing music.
I think Tom’s deafness will have an impact on his career choices regardless of whether he had implants or not. I think having his implants and developing spoken language will greatly increase the number of choices open to him. Whether that is a comment on how prejudiced society is, I don’t know. Clearly there are injustices done but it is not my place to campaign for rights for the deaf on the back of son’s disability. I want him to have choices.
4) are you aware that you are saving tax payers money by implanting Tom and sending him to a Hearing School than having to send him or set up a Deaf school?
I am only too aware of that fact. Do I think that is the reason why children are implanted? I suspect it is one of a number of factors that contribute to the calculation of the Quality Adjusted Life Year (QALY) but is that a reason not to implant?

5) Have you asked that when going for a brain scan (for example a motorbike accident)that a implantee will give false readings...
I know that Tom can’t have an MRI without having his implants removed but I suspect that, if circumstances were so serious that such a procedure was necessary, I think we’d be worrying about far more than his implants.

Can you see why some people are against it for example... why bother getting the whole family to adjust when adjusting a implantee is the easier option.
I do understand people’s concerns and, without wishing to appear trite, I hold with the phrase ‘I disapprove of what you say, but I will defend to the death your right to say it.’.
I do, however, take issue with regard to ‘bothering getting the whole family to adjust…’. In the twelve weeks that Tom was without sound we, his parents, started learning BSL as did his grandparents who were around a great deal of the time. They were all committed to lessons and learning but the harsh reality is , for the extended family, when you are not exposed to it every day it would be very difficult to progress. This would put communication barriers up between Tom and his extended family, isolating him from them. That can’t be good.
You do your best to make it sound the poor choice but when ‘the easier option’ brings this much joy to our family I’ll opt for that every time.

Loads of research being made to *cure* Deaf people and as you can now see the research into downs syndrome where you can abort them in womb.
Can you imagine (for argument sake) that you can detect Deafness in a womb and you have the option to abort it.. As you know that any child with a disability is too much work for parents and the cost of help is prohibitive.
Sweeping statements like that don’t help any debate. Children with disabilities cannot be described as ‘too much work for parents’ and hinting at eugenics doesn’t help either. Cochlear implants are about giving people access to sound and, as a natural consequence, spoken language. They are not forced on anyone and they are not about taking something away.

So there is always a debate on who CI benefit? the implantee or the parent?

It is clearly a benefit to society as a whole – I don’t think there is really a debate there. What’s good for the parent is going to be good for the child and vice versa.

I wish Tom good luck in the future and hopefully by the time he is 16 and leave to get a job all discrimination will have ended..
I thank you for your good wishes and hope he isn’t the victim of any discrimination too.

More on the Today Programme

2007-07-30T12:17:00.001Z

In response to a number of complaints from parents and professionals regarding this interview last Tuesday (24th July), Friday's Today Programme on Radio 4 interviewed Dr. Kaukab Rajput from Great Ormond Street. You can listen again (until 3rd August) to the relevant section at:

Listen again - Friday

There is a transcript available at:

I Look so I Can Hear - Cochlear implants in Children

I don't think the interview goes anywhere near far enough to undo the impressions left by the first piece. There are numerous factual inaccuracies in the original piece that weren't addressed and, by dwelling on risks associated with surgery rather than the potential outcomes, Dr. Rajput doesn't go far enough and doesn't sound particularly convinced herself.

So, as an attempt to provide some balance, here is a section of the transcript from the original interview with Paula Garfield of Deafinitely Theatre interspersed with my comments in italics.

“Well, adults and young people who make the decision for themselves is
absolutely fine by me when they are able to make their own choices.
This is a point that Dr. Rajput starts to make but needs much more emphasis. If it was left until the point children could make the decision then the chances of success are greatly reduced. In infants and young children the brain is growing and developing. It is much more able to adapt to new inputs, as from an implant, and make sense of them. The point is, that by having our children implanted, we are giving them choices not taking them away. We do not deny their deafness but to deny them the opportunity to hear?
But, what I am not comfortable with is babies who are implanted as early as possible because deafness is not a life threatening illness and a Cochlea Implant placed in the
head of a baby has many, many risks
the surgery normally takes around two hours and almost always under three (not the seven stated elsewhere in the interview). The risks associated with it are those related to general anaesthesia and precious little else. There is some suggestion of an increased risk of meningitis which is addressed via a vaccination prior to surgery. There is also a very low risk of contact with a facial nerve - something that any surgeon knows about and knows how to steer round.
After both his implants Tom stayed in for one night. In the US it is now routine to send implantees home the same day.
and the Cochlea Implant is then there for life. The child doesn’t have the choice of taking it off when they have had enough,
the internal part can be explanted if there are problems but there are precious few who need or choose that option. Any implanted person can, however, take the external device off whenever they want. Indeed, I watched an implanted girl and her mother give an incredible presentation a few weeks ago. As soon as the girl had finished doing her piece she sat at the back and flicked her coils off so she could concentrate on her book without having to listen to her mum embarrass her with stories of her younger days.
when they experience tinnitus maybe as a result of it. It’s stuck there.”
The RNID, in this factsheet, point out that most people experience a reduction in tinnitus post implant

This blog is hardly Radio 4 in terms of its audience but every opportunity to point out such inaccuracies like this must surely be taken.

A Day at the Office

2007-07-25T19:21:00.000Z

Tom seized the opportunity the other day and took control of my office. I work from home most of the week and Tom occasionally pops upstairs to consult with me on important matters such as 'which is the best website to watch Lightning McQueen' on and 'which is the best photo of Tom'.

So this video seems to reflect what Tom thinks I do all day. He also always thinks it's grandpa on the phone.

A day at the office from Jason B and Vimeo.

Radio shows that should know better...

2007-07-25T06:45:00.001Z

I was a bit late in the day getting to this. Obviously I aways listen to the Today programme on Radio 4 but yesterday, what with being Daddy Daycare and all, I had to forego...

Anyway, wouldn't you know it, yesterday's (Tuesday 24th July) show featured an item on cochlear implants. You can hear it until Sunday on http://www.bbc.co.uk/radio/aod/radio4_aod.shtml?radio4/today_mon - the item is about 2 1/4 hours in (around 8.19) - the controls allow you to jump in 15 minute increments.

A play, expressively titled 'Playing God', was being discussed. The playwrite, a deaf woman who's comments were being translated, had a position on implants for children that you mightn't have too much difficulty gathering from the play's title. I'm one of the folk 'playing god' with my child's hearing.

Also interviewed was Emma Nicholson, a Liberal Democrat MP who is partially deaf herself. She weighed in with some heartily ill-informed comments too, largely based around concern about the young age of some implantees.

I have no problem with people having opinions different from mine it's just that, too often with cochlear implants, they are couched in language that brooks no alternative and it was these opinions that were broadcast on a national radio show that is largely regarded as setting the day's news and political agenda with no airtime given to the counter-argument. And when I say counter-argument I mean scientifically proven benefit and factual accuracy.

There are so many untruths and leading opinions in the piece that could leave those who have no understanding of cochlear implants feeling that surgeons in this country were inflicting terrible pain on children for no reason. The desire to give a child the opportunity to develop spoken language and operate in the hearing world (which the vast majority of their parents occupy) is presented as a fool's errand and detrimental to the child's wellbeing.

Those of us 'on the inside' of the cochlear implant world thought that the climate had changed. For us the battle lines are drawn on issues of number of implants (two for all children at least please) not on whether parents should be able to make the decision on their child's behalf. The item actually suggests that the decision should be left until the child is able to contribute to the decision - a stage when the benefits are greatly reduced because of a lack of auditory stimulation to the brain in the intervening, developmental years. These are the facts that need to be put before the opinion-formers when they are listening to inaccurate reports such as this.

Just go and listen - and then write to Radio 4 and possibly your MP too.

Rainy days don't have to be dull...

2007-07-12T12:55:00.001Z

Do you detect more than a hint of 'cheeky monkey' in that face?

Themed raincoat/boots have been something of a feature of Tom's wardrobe this year. Unfortunately he's mixing themes currently so we have a 'dinosaur' coat with 'frog' boots. The 'frog' coat is waiting for slightly longer arms...

Clearly it's a massive sartorial error that we will have to pay for in years to come - possibly with very expensive therapy.

If you could design a weekend...

2007-07-09T20:29:00.001Z

I'm not with Nik and Tom tonight. Instead I am sitting in a pleasantly contemporary hotel room in the centre of Truro, Cornwall ahead of a fun-filled meeting tomorrow. That's worth an ironic-sounding 'yippee-kye-aye' by anybody's reckoning.

Separations like this happen a little too often but are the unavoidable trade-off against the flexibility of working from home. I get far more 'home' days than 'away' days so I shouldn't complain...

So I sit here and ponder on the weekend that has just gone - a weekend that has seen Tom thrive, amuse and inspire us in a way that has made the weekend seem special but, in reality, happens day after day. A few sweet excerpts from this weekend go a long way towards illustrating how far we've come and just how much promise the future holds.

Saturday Morning

When we're home for the weekend Saturday morning is swimming morning for Tom and me. No longer the hour-long screaming fits in the changing rooms when Tom would refuse to allow me to put an implant on long enough to tell him it would be OK and we were on our way to the shower and yes, he could have raisins soon. Now we splash and giggle and gesture our way through. How Tom might actually learn to swim is a concept I occasionally toy with but tend to leave for the world of 'in its own good time'.

This Saturday, for no discernable reason I could fathom, Tom decided the shallow paddling area with the hand-pumped fish fountains was a perfect place for Daddy and Tom to dine. Intent on his mission and oblivious to the noisy children surrounding us Tom criss-crossed the paddling area fetching imaginary crockery from fantasy cupboards and served me up a delightful banquet of made-up jelly and pretend cereal. We tucked in lustily (occasionally feeding each other tasty morsels) and, while there were occasional friendly disputes over whose invisible plate was whose, it all ended happily. The chores were left undone and we played imaginary drums and pianos, splashing merrily to ourselves. I have no idea what tune Tom heard while he played but I'm sure it was beautiful and note perfect.

We don't sign. The few that were picked up during the short period before Tom's first implant have long since been forgotten. When his processors are off Tom whispers and I either lean in closer, a gesture which Tom takes to mean 'say it again' or I nod enthusiastically and keep on drumming. Simple communication but, for now, it works.

Saturday Afternoon

The annual Ear Foundation barbeque/garden party - an opportunity for an increasingly aware Tom to see lots of other children wearing 'ears' just like his. Only he didn't pay a blind bit of notice , focusing instead on the bouncy castle and hiding under the cake stall table ramming more and more flapjack into his mouth. It makes a father proud.

Nik and I were supposed to be selling strawberries and cream. I was rubbish and kept getting sidetracked into conversation with other parents; parents with similar stories who had that all-important entry level understanding of what this cochlear implant malarkey was all about. Our neighbours popped along too - supportive darlings that they are - and Mark said he couldn't walk more than a couple of yards through the garden without overhearing another conversation that included the abbreviation 'PCT', often preceeded by less-than-polite adjectives.

Once Nik and I had resolved the 'labour discrepancy' issue (I was sorry) I shared all the discussions I'd been party to. There must be few occasions where you can have an objective discussion about who has it worse; those families were children are born deaf or those who have children who lose it to meningitis, without feeling remotely defensive. If you're interested, we didn't resolve that one although the post-meningitic families didn't have quite as many concerns about the surgery - what's a few hours on an operating table compared to a coma?

Sunday

You know your child is growing up when you find yourself able to get to the end of an afternoon with another family and realise you've had chance to actually talk. Tom and his new friend Lloyd needed just the odd poke in the right fun direction and they were happy. The sun shone (for what must be the first time this summer), the (very occasional) beer flowed and Tom was a normal, happy, car obsessed boy chit-chatting away with another car obsessed boy about the games to play next and the best way to get the pushalong car and tricycle wedged between shed and wall.

This was my first experience of seeing Tom with a new friend. By new I mean 'Child who's not Joe next door' - their relationship has morphed into the toddler equivalent of a forty year marriage. They greet each other enthusiastically, talk about each other when they're not there but, as soon as they're together they either bicker or slump companionably in front of the TV. With Lloyd, a seemingly critical few months older, and a little careful parental steerage it was all turn taking, sharing and laughing like drains while expending megaWatts of ice cream- derived kid energy.

Tom so rocks. I must download a picture from the weekend for your delectation. You'll melt at his cuteness.

World of Sound

2007-06-29T12:50:00.000Z

A new UK site championing cochlear implants has appeared.

World of Sound has started life with a featured campaign, that of the 'postcode lottery' that currently exists with regard to funding. The opening lines say you can:

Read about the funding issues surrounding cochlear implants and the different viewpoints of a parent, PCT and professional.

You might recognise the parent who shared his views. It was written sometime last autumn I think - funny how little has moved forward for us on the Healthcare Commission and funding front since then (when I say funny I mean not remotely humorous and actually an ongoing source of frustration).

The site presents an even-handed approach giving the PCTs and implant programmes the opportunity to explain their positions re: funding which they both manage do without any mention of bilaterals or the vast difference between the process (and likelihood of funding) for adults and that for children. Seeing as these are the requests that are most inconsistently dealt with across the country, for me it seems a gaping omission. Will someone new to the world of implants grasp that from what is presented here?

Because of this it made me wonder who the target audience is. If you are in the process of being assessed for implantation then you are immersed in much more detailed information than you will find here. You will only come into contact with your PCT if you are unlucky enough to have your implant programme's request turned down and then, well your business case might well be incredibly professional (as the representative from a PCT recommends) but if your PCT hasn't got the cash...

In fact, the more I ponder the PCT's position as written here the more I despair and I'm trying not to do that as much these days.

So if it isn't for prospective implantees who is the site for? It gave me another place to tell Tom's story which can't be a bad thing but in terms of moving the debate on around postcode lotteries, I'm not sure it succeeds. For those who aren't up to their necks in all things cochlear there needs to be a little more 'back story' to put the viewpoints given in to some perspective and I would like to see an editorial point of view?

Coming down on one side or the other is not as straightforward as it might seem though (he says, answering his own question). While Cochlear (who sponsor the site) appear to have a position on bilateral implantation (they regard it as the 'standard of care') they remain careful not to upset the people who, usually, have to buy their kit or those who have some influence over which device a recipient chooses.

Overall, any attempt to bring the debate to more people is a good thing and, given the complexity and subjectivity of the topic in hand (and the fact that I got to rant with Tom being a user of the Other Brand), I'm prepared to cut the World of Sound a little slack with their position astride the fence. I wait to see how it develops.

I think I've joined a cult...

2007-06-26T19:35:00.000Z

There were a few occasions on Saturday where I thought we might have accidentally joined a cult.

There were a number of telltale signs. The most telling is that the system in which we believe, in which we trust, is regarded as unorthodox by the ‘authorities’ and, if we do find support and interest from ‘establishment’ figures then it is spoken about in hushed tones. Despite the opposition we might expect, we were encouraged to evangelise about our belief and the way it had helped us even if we met with resistance and hostility.

There were other, more subtle, indicators that completed the picture for me but I’ve always had an imagination that leans to the fanciful. We met in a large Edwardian house on the outskirts of Oxford (perfect cult territory), everyone smiled continually and, most suspiciously, there was a great deal of communal singing. Even our responses; general elation with occasional lapses into tears, fit the cult theory to a tee.

So what were we up to? We were attending the far-from-sinister Auditory Verbal UK Parents’ Conference, held near the organisation’s premises in Bicester. Of course Auditory Verbal (AV) Therapy isn’t actually a cult but, in the UK, it remains a fringe practise. The AV approach to speech and language development with deaf and hard of hearing children is not outrageous; in fact it strikes us as mostly common sense. So why can’t a well proven approach be considered the norm in the USA and elsewhere not be part of the mainstream here in the UK?

We didn’t even hear about it though ‘official’ channels - it was only via the international CICircle discussion forum and exchanges with other parents that we heard about Jacqueline Stokes and her team. The same goes for the John Tracy Clinic in California – an organisation that promotes verbal communication and run an excellent correspondence course.

Too many of our early interactions with ‘official’ therapists and health professionals have left us feeling deflated at a time where one would hope for optimism and talk of Tom’s potential with these new implants. Realism shouldn’t be excluded but the extent to which expectations are lowered is far from helpful. There is little attempt, bar one notable exception, to challenge us as parents to anything like the extent that Jacqueline does. Is this approach borne out of a fear of failure? A knowledge that the state just can’t guarantee the quality of its practitioners or its provision?

It was only at AV that our role in Tom’s development was really challenged in a vigorous and inspiring way. The way of the state is much gentler and easily missed or dismissed. It seems ridiculous to me now, how ‘British’ their approach is and yet, perversely, how understandable (to a British psyche). Weighing up the best interests and life chances of the child against the fear of causing offence? Sorry, we don’t ‘do’ tough love here. You do what you can and we’ll be here occasionally.

As a parent of a very sick child, or one who has just been diagnosed as deaf, you are very raw. Feelings can be hurt easily but, at the same time, you are desperate to wrestle back some control. After all the tests, diagnoses and interventions there is, at last, something you can do and surely there isn’t a single parent in that situation who wouldn’t want to do everything they could? While there may be moments where you don’t feel you can do any more, that is far from being the prevailing sentiment. We don’t deny that our child is broken but we will do everything in our power to minimise the impact on his future. Sod Holland - we want Italy... and Holland (for those Dutch relatives of mine).

We heard numerous therapist horror stories on Saturday from other parents that left us feeling reasonably lucky in our interactions with professionals. Many could be aggregated under the heading of ‘Don’t get your hopes up’ while others talked of being made to feel grateful for any intervention. I don’t know how prevalent such attitudes are but it should be plain what impact they have on parents and families who have just been confronted with the news that their child is deaf.

As I’ve written before we have been incredibly lucky with our Teacher of the Deaf, Tania Sorenti. She was willing, nay excited, to collaborate with us as parents and our choice to use AV UK. She has undoubtedly contributed to Tom’s enormous progress. I only wish, after hearing other parents on Saturday, that there were a few more of her to go round.

It is so important to say this over and over: cochlear implants are astonishing devices but without appropriate intensive therapy from driven, enthused professionals who believe your child can achieve pretty much anything, then there isn’t much point.

An important piece of history

2007-06-22T19:37:00.001Z

Stumbled across a link to this article in the Australian Herald Sun over at the Deaf Blog (who I wish would stop that video kicking off on loading the home page).

A short excerpt:

Holly McDonell is living proof of the difference science can make. The 24-year-old has just graduated with first class honours in law but two decades ago she was the world's first Cochlear implant recipient.

As she celebrated the 20-year anniversary of the breakthrough Aussie invention with the surgeon who made it possible, Ms McDonell reflected on the implant that transformed her world.

"Without the implant I am completely deaf but with it I can hear just as well as everyone else," she said.

This is a technology that is unlocking doors in such an astonishing way. This is the sort of story that fuels parental ambition and that Tom will spend his teenage years wishing his dad had never seen.

Nagging doubts put to rest

2007-06-21T18:42:00.000Z

Cochlear implants and music appreciation is an interesting sub-topic and one that has given us some cause for thought. With so much of pre-school and early school years featuring action songs and the learning of rhymes, we feared Tom's hearing would be a significant barrier to participation. In the paranoid parents' brain I foresaw a dispondent son standing on the edge of a circle while all around him his peers Dingle Dangled their Scarecrows and Wound their Bobbins Up.

Michael Chorost, in his article 'My Bionic Quest for Bolero', addresses the issue in an engaging manner without skirting round the science of it. The limitations of the 'channels' of sound offered by implants makes distinguishing between note close together on the scale impossible. There is promise of more with Advanced Bionic's HiRes 120 Strategy .

We aren't quite at that level of need yet. The 16 channels (well, 15 in the left ear) that Tom is getting seem to be more than sufficent for him to get the tune, the all-important actions, most of the lyrics and a huge smile on his face.

As for the other nagging doubt - to explain it I have to admit, in a slightly guilty middle-class parent way, that Tom likes a bit of TV every once in a while but I've always had the impression that Tom wasn't really understanding much of what he heard. The quality of the sound is different to natural voices and there aren't always visual cues to aid understanding so I assumed it was just the bright colours and rapid movement that was holding his slack-jawed attention.

Watching Tom at AV therapy yesterday allayed this fear and much more besides. I watched most of the session with tears in my eyes; I was so moved by what Tom could do. It was such a simple exercise (as is so much of what we learn with the marvel that is Jacqueline Stokes). Jacqueline played an audio story on an old style mono cassette recorder which Tom and she followed with the book proper, stopping frequently to talk about what was heard and how it related to the story.

Tom was utterly inthralled; attentive, excited and hearing everything. He didn't miss a trick and, when the story was finished he wanted to plough on into the next one. The story held his attention for upwards of 20 or 30 minutes and then, with very little encouragement, he proceeded to recreate the story with toys for another half an hour.

Just to make anyone aware who's joining this story at this point (and remind the rest of you); Tom is deaf, relying on cochlear implants... and he's not quite three years old.

He is loving sound - he's also learning words that we haven't taught him (this is where it starts to get dangerous) and experimenting with the language he's learnt. His progress is such that we've scaled down to once every two months with Jacqueline. There's the transition to school to manage but I'm beginning to suspect that Tom won't be the quiet one on the edge of the circle - he'll be the irrepressible one that the teacher needs to shut up.

'Baa Baa Black Sheep, Daddy Shut Your Eyes!'

2007-06-14T19:05:00.000Z

I thought kids were supposed to grow up when you weren't looking? We've just had a week or two of wholesome family togetherness on holiday (mostly in the Ardeche region of southern France, thanks for asking) where Tom has been constantly with us; spoilt to within an inch of bratdom and in sight continuously. Scrutinised, in fact - his actions dissected and analysed by a panel of judges. Then we come home and Tom returns to his usual routine a changed boy.

Karen, Tom's childminder, has always described him as 'a watcher'. While the other kids at playgroup charge off and throw themselves into activities Tom would hang back, see what they got up to and then quietly select his moment to act. Often this would involve seizing his favourite pedal car or staying close to the grown ups, whiling away his time in blissful solitude. I've always got that about him. I was that kid once.

This week, though, something has changed. Monday found Tom joining in with the dancing and singing at Tumbletots; something he's studiously avoided in the past. He even deigned to join 'the train' - a conga chain that forms to migrate the tots from one activity to the next. In the past Tom has demonstrated some serious 'personal space' issues at the very suggestion that he may allow another child to hold his hips. On Monday, however, off he toddled.

On Wednesday Karen reported that Tom had launched himself into a softplay area - one of those multi-tiered cage things with slides, giant mangles and holes that were designed to humiliate fathers who aren't as flexible or lithe as they once were. This is another first; up 'til now Nik, Karen or I have been dragged into these squishy, claustrophobic hell-zones where four year olds climb the netting and body slam you in the ball pit. I don't think I'll miss that particular pleasure but I do wonder where these things were when I was a kid (Cue extended wistful reminiscences about the golden age of childhood when you played outside, climbed trees, fell in streams etc. etc.).

A confidence has emerged that has caught us by surprise and we love it.

A year ago today we brought Tom home from hospital. Again. That was the beginning of the journey back to sound - his first cochlear implant. He hadn't started walking again and had been out of hospital less than a month but photos of that time show him smiling, playing and blissfully unaffected by the turmoil that we were going through.

How things move on.

This morning Tom sang 'Twinkle, Twinkle' and 'Baa Baa Black Sheep' to me while I pretended to go to sleep in his bed. He has 'Twinkle, Twinkle' down pat while 'Baa, Baa Black Sheep' sounds like a stuck record. He gets jammed on the first line and needs a small vocal nudge to get him off the first line.

This morning it went:

'Baa Baa Black Sheep,
Daddy Shut Your Eyes!,
Have you any wool?
Baa Baa Black Sheep...'

That's my rather long-winded way of saying 'Sorry for the lack of updates - Tom is in astonishing form'

What Tom did next...

2007-06-14T18:48:00.001Z

This last few weeks Tom has mostly been...

running around the French countryside while bossing his parents and grandparents around...

Trying to unlock chateaux with his grandpa's car keys. Marks for creative thinking are deserved, I think, along with a sigh of relief that he has moved on from trying the handles of parked cars. That was a slightly disturbing (but criminally amusing) habit.
There was time for looking radiant with his mother and reminding me what a lucky man I am to have a family like this...

We caught nothing bar a few small stones but that kind of effort is tiring y'know?

Holidays are splendid things aren't they?

Of charities and web friends

2007-05-29T10:25:00.000Z

We received a parcel this morning from an internet friend called Kristin. We share a hobby, nay mild obsession, over at IgoUgo , a travel community website where we contribute travel journals and photos. It's a bit like Trip advisor or the Lonely Planet website (or the many others out there); ordinary travellers write reviews of places they've been. The difference with IgoUgo, to my mind, is that extended 'articles' are encouraged through financial rewards, competitions, annual awards and the like. It's a cool site and you'll find Kristin there as 'stomps' and me as 'jaybroek'.

That was all a very meandering introduction to the real thrust of this post. If you follow the links and read some of the journals then great but more to the point, I've got to know some great people through IgoUgo, many of whom have been very kind and have sent supportive messages over the past year or so. Kristin has gone some distance further than most. Last weekend she took part in the Three Peaks Challenge, raising money for the meningitis trust, a charity that, not so coincidentally, have been a part of our lives during the past year. We have been the beneficiaries of financial and counselling support from the trust; support that has been a vital part of Tom's and our recovery.

Now I'm pretty certain that Kristin was going to tackle the challenge before she read about Tom but it is wonderful to know that she took on the peaks with our son in her thoughts and those of her fellow walkers. Each person on the climbs carried with them a pebble, engraved with the name of a meningitis survivor and Kristin's carried Tom's name. She also took with her a couple of T-shirts; one for Tom and one for herself. It was the shirt for Tom, now signed by all those involved, that arrived in the post this morning and was the cause of a tear or two.

So there's hope for mankind with the likes of Kristin amongst us - people like her keep on doing special things for people like us, regardless of whether she knows us or not.

Thank you Kristin.

Happiness is a Car-shaped cake

2007-05-29T10:13:00.000Z

On Saturday my parents came over for a barbeque. They brought a cake for Tom because the old man had seen it and couldn't resist. And because they rarely have to deal with the consequences of the sugar rush that follows.

They don't have to buy Tom's affection through the provision of Lightning McQueen-shaped gifts but clearly figure that there's no harm in shoring up their stock once in a while.

Anyway, I couldn't decide which picture best captured the essence of Tom's excitement so I thought I'd leave it to you and see if it drums up a few comments.

And to pre-empt the anticipated questions; yes that is a knife he's brandishing. Mum and Nanny are just out of shot, ready to head off any manic activity...

The mouth was consumed first, then the headlights and then the wheels. The sponge is something of an after thought; Tom is happiest just working through the icing. That's where the biggest buzz is.

Smile, darn it, smile!

2007-05-21T19:24:00.001Z

I asked Tom to smile for the camera - it looks like he's forcing himself manually doesn't it? Note the sticker chart on the door in the background - that's Tom's 'pee in the potty' reward system. He's being a smart little cookie and he has just about got it. He has become king of the precautionary pee and, at the slightest internal urge, called for the throne... only to produce a teaspoonful.

Tom can...

2007-05-14T18:31:00.000Z

We're in the midst of potty training. Lots of positive reinforcement is going Tom's way; cheers and stickers whenever a performance is made (sometimes while silently gagging - we really need to look at what we're feeding him) while a soothing, blame-free 'Oh dear' greets the accidents. This has led to a number of words being added to his vocabulary including the sing-song 'never mind...' that accompanies Nik discovering pants full of poop and 'Tom-tom PUMPED!' (a phrase that fully deserves its resounding triumphalism).

So, while watching my son's gait transform from padded waddle to snake-hipped jaunt. I had one of those disappearing childhood sensationss. I began to ponder on all the things that Tom is nailing at the moment and it filled me with smiles so I had to share.

Tom routinely puts his coils back, giving them a reassuring pat when they're in place.
He's pretty adept at putting DVDs in the machine and gets frustrated with the endless trailers.
He knows that bogeys, burps and pumps are all hilarious but is not quite the judge of 'context' that he might one day be (hopefully).
He knows that riding up front is far, far better than being strapped in the back of the car, no matter which way you dress it up.
He knows that watching TV in bed in the morning beats getting dressed and hurrying anywhere...
At the weekend, while playing in the garden with Joe-from-next-door, there were times when their running gait looked the same. Tom's balance is improving enormously (thanks Deborah).

Nothing reflective to say about all that really - it's just a joy to watch him grow up.

Bike story

2007-05-11T06:44:00.000Z

The road that we use to take Tom to his childminder's is closed. Due to the freakish nature of the road layout and traffic patterns that you don't notice until such things happen, this turns a five minute 'nip in the car' into a 45 minute journey of log-jammed commuter hell.

The work is scheduled to last 12 weeks.

The preferred option has become cycling. Tom has a chair that can fit on both our bikes with well-designed Scandanavian ease (it even has a Norwegian flag) and he perches up there behind us, bouncing merrily over the poorly surfaced roads that you never quite felt before.

After two weeks the novelty is wearing thin for Tom. In the morning and when picking him up he optimistically inquires 'Going in daddy's car?' and looks mildly crestfallen when the answer is in the negative. Clearly he cares not a jot that our fitness is improving enormously as we cut a dash through the local highways and byways. He's a little fed up of the whole pre-flight rigmarole with the fleecy beanie hat for holding his implant coils in place and the straps of the cycle helmet which mess with his whole personal space thing. He has recently developed some firm opinions about such matters.

The point of this story, other than adding to the wholesome family image I'm trying to build up, is that I talk to Tom while we're cycling along. I say talk; I call over my shoulder and Tom, occasionally, responds. Not to every word - stuff gets lost on the breeze or isn't easily interpreted but he hears some of it. Arms are snapped out sideways when I say 'lets be aeroplanes!' and negotiations about sweets begin when we ride past the corner shop.

Under his fleecy hat and cycle helmet, out of sight of my mouth and with the breeze blowing Tom can hear me. And that's pretty cool.

Conversations about cochlear implants

2007-05-04T08:50:00.000Z

I’ve been talking to people about cochlear implants this week. No surprise there really, although I am being a little more selective and trying not to instigate such conversations with everyone I speak to. I think it particularly unnerves the guys in the sandwich shop. I am jesting – I have it much more under control than that. I hope, anyway.

Yesterday’s conversation was a telephone interview with a reporter from Trent FM, a local commercial radio station. Well informed on all matters cochlear, Matt the reporter asked some fairly searching questions, my rambling answers to which have been sliced and diced into some semblance of usefulness and was put out on the air in news bulletins during the course of yesterday. I have no real idea how it turned out as I was in meetings in London all day but the nagging suspicion that I sounded like a buffoon lingers. Nik assures me that I didn’t and they even used some excerpts of Tom chatting in these video clips so I’m sorry I missed those.

The questions were fairly wide ranging although the focus – the bits that stand out most prominently in my memory at least – concerned matters of cost, bilateral implantation and PCTs. I have no idea which sentences made the cut but I didn’t envy him the task of trying to make sense of my tortured, multi-clause ramblings.

One thing I did try to include in my answers was the whole issue of habilitation and speech therapy, a topic that was at the forefront of my mind following a visit to AV on Monday. The media coverage of cochlear implants tends to focus on provision and cost; who’s got one and who’s got two; which Primary Care Trusts (PCTs) cough up and which don’t. I’ve been guilty of the same. These are the emotive subjects that have an immediacy people unfamiliar with cochlear implants can grasp and, hopefully, share in our outrage. But getting the implant is far from the end of the story.

Access to long-term, high quality speech and language therapy is of vital importance to the successful use of cochlear implants, particularly for young children. Inside ‘the club’ we understand that but access to it isn’t guaranteed. It’s another area subject to local variation in state provision. It is something that is also hugely dependent on parental involvement and commitment.

We haven’t had much cause to complain in this respect because, for a change, we got lucky. Tom’s Teacher of the Deaf (from the Local Education Authority), Tania Sorenti, is fabulous in every respect. The Meningitis Trust have assisted with the expense of additional therapy via Auditory Verbal UK; a group of people who, I think, should branch out into parenting courses such has been their impact on us as a family. Tom continues to be a happy, fun-loving and largely compliant two year old. While he is clearly blessed with fabulous genes from his mother, I’m certain that the clear messages he gets from us contribute to this. We use spoken language to plan, negotiate and defuse and it’s paying off.

At the weekend we watched while Tom tried out negotiating for himself with the son of some good friends of ours. In an attempt to regain possession of his beloved ‘Lightning McQueen’, Tom found another car lying in the garden, took it over to Patrick and asked him to swap. No attempt to snatch or wrestle the car back, just language. Patrick was having none of it, of course – he too is in thrall to the Power of Pixar – but we were very proud and are now building Tom’s skills further such that he will offer strictly time-limited loan schemes. I fear a future in politics in the offing.

We couldn’t imagine doing any less for Tom. The feeling of utter helplessness that is experienced when your child is beyond your care is something I never wish to feel again. Everything we have done since then has that time, that period in our family’s collective past, as a counterpoint. We are seizing every opportunity to ENable our son, to enrich his life and to make sure his deafness has no detrimental impact. The profound side-effect is that he is become increasingly eloquent.

Rob Rummel-Hudson mentioned ‘Holland’ a post or two ago; a poem that attempts to prepare parents of disabled children for a world of different expectations. He came to a conclusion that I would have to agree with, having myself gained initial comfort from the copy of that poem that is pinned to the wall of PICU in Nottingham’s QMC. Tom wants Italy and he shall have it.

A Year to the Day - posted a little late

2007-05-01T18:43:00.000Z

This pic was taken on the 22nd April; a significant date in our diaries now as it marks the day Tom was admitted to hospital. This year we took the decision to fill the day with about as much fun as it could take which meant 'Sundown Adventureland'!!

What do you mean you've never heard of Sundown? Why, it's only the premier amusement park for the under fives in the whole of the North Nottinghamshire/Lincolnshire border region. Imagine if Walt Disney had been born in Retford with a sight less ambition, less access to prime real estate in the sun and a lacksadaisical attitude to fibre-glass care and you might be getting close. Tom, and many toddlers besides, doesn't care. To coin a phrase borrowed from my eloquent neighbour's description of 'In The Night Garden', Sundown is baby crack.

We had a great time and set ourselves a tradition for future years.

Spin the wheel and place your bets...

2007-04-27T16:46:00.000Z

And so it goes...

Nicky received a phone call yesterday that left us both delighted. The fact that it also struck a particularly raw nerve makes it worthy of comment here. Another family in the CICS club that we have come to know had just been through their bilateral implant appeal hearing. Their son, deafened by meningitis at the age of eight and implanted (on one side) for a year and a half or so, has been given the go-ahead by their local PCT (Primary Care Trust). A PCT, by the way, that shares a border with ours but, hey, there are no prizes for proximity in this particular lottery.

The news that one more deaf child will benefit from bilateral implantation is an event to be celebrated but we would have to be supremely altruistic not to feel a pang of frustration at the astounding randomness of it. The weight of evidence is not greater in Derbyshire than it is here and I'm pretty certain their case didn't differ too much from ours. How can I be certain? Because we spoke at great length in the days leading up to the hearing and shared everything we had used ourselves with them.

Wait, it gets better.

A family in the South of England got a bilateral implant for their daughter on appeal in autumn last year. Their PCT were persuaded by an excellent letter written by the mum, accompanied as it was by useful references and web links. The letter was reprinted in the CICS newsletter, hopefully so that it can be sent to the ever-dwindling number of recalcitrant (and/or broke) PCTs who still claim there is insufficient evidence.

I bring your attention to this one because the article that accompanied it contained lines such as this:

I've always thought that families who have a deaf child are a part of a bigger spiritual family. Jason, Nicky and Tom Broekhuizen are living proof of this belief, as if it wasn't for that late night phone call and all their insight I'm sure that the outcome for funding would have been different.

This is not an attempt to 'big' us up; any insight we have is simple research and the painful experience of going through the process. We families are all in the same boat and we will happily talk to anyone about our experiences. Its not even as if we're charmed in any way either ('natter to me and all your implant wishes will come true') as other families will testify. The point is, of course, that as close to the same case as makes no odds has been made to several PCTs with profoundly differing outcomes. This is not a stunning revelation but that doesn't mean that it is any less galling or any less absurd.

I have tried to understand healthcare legislation once or twice and it bored me to tears (you'd think it was done that way deliberately). I am sure, somewhere 'in the beginning', that there were some semi-solid reasons for allowing different PCTs to decide for themselves which services their citizens could have access to but didn't anyone foresee this sort of situation?

There's something basic about wanting to be treated fairly - some of my clearest of memories of school teaching are of kids protesting vehemently about perceived unfairness - and it is that injustice which keeps us fuming. If no-one in the country had access to bilateral implants it would undoubtedly be easier to accept. Undoubtedly we would be lobbying like crazy for parity with the US or most of Europe but it wouldn't be quite as 'in your face'.

I'm at a loss. What next then? Any ideas?

Bilaterals in the News

2007-04-24T07:41:00.000Z

Bilateral implants have made the national news this weekend courtesy of this article in the Guardian.

The parents of a six-year-old girl who was born profoundly deaf are complaining to the Office of Fair Trading after the NHS refused to provide her with a second "bionic ear" implant, leaving them with a £30,000 bill for the operation.
Six-year-old Sarosha Byrne from Nottinghamshire will today undergo an operation to receive the cochlear implant to fully repair her hearing. But her primary care trust has refused to foot the bill in what her parents say is a postcode lottery affecting more than 3,000 children.
The case is now the subject of an OFT inquiry after her parents complained that Cochlear, the multinational company which makes the implants, is charging £5,000 more for the device in the UK than it does in other countries.
The cochlear implant costs £12,563 in the UK compared with £7,770 in Sweden. Parents here also have to pay £19,000 for the operation to insert it.

I’ve talked at length to Sarosha’s father Dominic on numerous occasions - that is the way of it when you join elite clubs such as ours. The circumstances of our children’s deafness and treatment have differences; Sarosha was born deaf and had her first implant four years ago whereas Tom lost his only a year ago and was implanted shortly after, but the similarities and shared challenges are more numerous. She is a shining example of what progress can be made through appropriate therapy (Auditory Verbal courtesy of those nice people in Bicester), good professional involvement and parental dedication as, we think, is Tom. In addition, many of our battles with the authorities have followed parallel courses.

We started talking soon after Tom was first implanted; the Byrnes’ had been fighting for bilaterals with a different Primary Care Trust (PCT) and we compared notes frequently. Back in August of last year we were even interviewed for the same Times article – a postcode lottery piece that was written as a follow up to this successful appeal but wasn’t published. Now their story is being told but with a few extra frustrating and painful chapters.

Cochlear’s pricing structure is not geared to rip off private patients like the Byrne’s and ourselves. In the UK, Cochlear’s main customer by an overwhelming majority is the NHS – it is them they’re dealing with. Does the health service know about this huge price differential between the UK and elsewhere? Is there an explanation to offer? Are they doing anything about it or just leaving it up to people like Dominic and Shamim?

There is, of course, a double whammy. Sarosha and Tom were turned down for second implants for a smokescreen of reasons around how ‘unproven’ bilateral implantation is. Apparently, there isn’t the proof that hearing out of two ears isn’t better enough than hearing out of one (except when it’s treatable by relatively inexpensive hearing aids). Excuse me for sounding facetious – I just need to shorthand my way to the point. The reality was budgetary; the amount the (NHS) Implant Team charges the (NHS) PCT for a second implant isn’t much less than they charge for the first (in the region of £30,000 for the first year) partly, one must presume, because of the cost of the device. So the inflated cost contributed to the initial refusal and then has to actually be found because you're the dedicated family who reads the evidence and knows what counts and what's at stake.

We didn't choose Advanced Bionics because of the price - when the device is given via the NHS, as the first was, the decision is made based on everything but. As it turns out we chose a company who made it considerably easier to afford the second implant than Cochlear but we'll still be cheering on the Byrnes' in their fight. The manufacturers have a role to play in the drive towards increased access to bilateral implantation. Their costs feed into the dreaded QALY equation and could well tip the balance.

Of course, the NHS has an even bigger part to play with its internal market and inefficiencies but that's for another day.

Rant over.

Tom media watch

For those of you who get a kick out of seeing Tom mentioned around the web - or maybe that's just me - the local paper - The Nottingham Evening Post - namechecked him in this follow-up article to the Guardian piece (hope the link survives - they can be a little flaky).

In a slightly more exclusive publication, The Ear Foundation's Spring Newsletter, Tom has made the front page. Admittedly, it's the back of his head but they did take lots of photos of him and Nicky which are featuring in their Steps Together resource material. That shouldn't be the only reason you decide to purchase this incredibly useful pack, fabulous though the pictures are.

Tom's Year

2007-04-20T21:16:00.000Z

On Sunday it will be a year since Tom was admitted to hospital suffering from pneumococcal meningitis. Although incomparable with that time, this past few weeks has been, understandably, tough for us.

This video is our attempt to show what astonishing progress Tom has made since then. He is walking so well now, tackling steps without help and running everywhere in the way toddlers do. If you see this video through to the end (apologies, it runs to seven minutes or so) you'll see how much he's talking too.

He is our inspiration - nothing will stop this boy.

Tom's Year on Vimeo

Just like PC Plod!

2007-04-18T12:24:00.000Z

‘Motorcycle man!’ Tom declared, staring at the object of his suspicions.

‘Racing car man?’ he further enquired, uncertain now as the Motorcycle Man had not responded as expected.

The target of this curiosity continued to stare straight ahead, impassive behind sunglasses. Tom’s assessment was not far off and my slightly hushed assurance that he was probably right didn’t quell his curiosity. He needed to hear it from the horse’s mouth.

He decided to press and the burly, potentially toddler-eating Hell’s Angel continued to ignore him. Quite sensibly, given that the said gentleman was on a Derby-Nottingham train rather than a Harley, a review of the evidence was required.

‘Motorcycle man!’

‘Sunglasses on, motorcycle jacket’

‘Man’s got long hair. Man’s got a beard! Man’s got a nose!’

It was the last one that broke the alleged biker’s stony resistance. His ‘chick’ started giggling at ‘long hair’ – he held out until his (pierced) nose was listed and a smirk broke briefly across his face before ‘cool’ was restored. Satisfied, Tom turned his attention elsewhere.

‘Just like PC Plod!’ he shouted down the corridor at a group of police officers and, after correctly identifying one as a police woman, began to berate one of them.

‘Policeman put your helmet on!’

I glanced over at the biker; he seemed relieved that he’d got off so lightly. The young policeman was busy trying to explain to my toddler son (who has a thing for appropriate attire) that he couldn’t get through the train door with his helmet on. This didn’t wash; he wisely gave in and donned his helmet.

God grant me the serenity...

The anniversary of Tom’s meningitis is approaching and hilariously ordinary days like these keep happening. Unfortunately, what also keeps happening are the recurring memories and the late evening conversations where positive comparisons of then and now (then being PICU and the immediate aftermath) give way to fears for the future and a nagging inability to put the good advice into practise by having that serenity to accept the things we cannot change. We’ve got the next bit sorted; nothing is more important to us than, courageously or not, changing the things we can -Tom’s progress is testament to that. Sadly for us, though we also know the difference it doesn’t always help.

It was never going to be an easy month, this one.

Easter - the aftermath

2007-04-09T18:48:00.000Z

The washing machine is grinding to a halt after its fourth run of the day; the toy Dyson lies where it was abandoned on the rug; a rapidly deflating McDonalds balloon bumps limply across the floor at the slightest breeze and Tom, not before time, sleeps soundly in 'the racing car bed'. The house is quiet and the Easter Holiday weekend is at an end. The tornado that is the Family Smith has passed on and we can rest again.

I make it sound more dramatic than it was; these old university friends of mine and their three delightful children were no different to any family of five wired on a heady cocktail of Fanta and their youngest's body weight in chocolate. And Tom adored them. He followed the older ones round, he directed questions to them and understood what they said back. Tom laughed with Ellis and Rhianna and, as part of a joint project with the latter that will be worth a couple of credits in delinquent school, coated much of the shed in chalk. He chased and was pursued; he tickled and guffawed and generally had a ball.

And so did we.

The weekend was exceptional merely in its ordinariness, the sort of weekend families have together, and it couldn't have come at a better time for us. So, in the style of all the therapy sessions we subject Tom and ourselves to, here are our 'take home messages' from the weekend.

The house of the Golden Arches is a perfectly acceptable, nay ideal, restaurant of choice for an Easter Sunday lunch with four under-10s.
An hour-and-a-half long bedtime tantrum is par for the course and not, as nagging voices in the backs of minds will have it, in any way exacerbated by Tom's deafness. It's exacerbated by chocolate.
Staying off the topic of work isn't always the best course of action on holiday weekends, particularly not when one of said friends is an Occupational Therapist who, in a few short minutes, came up with some excellent suggestions for helping Tom with his still-slightly-suspect balance. Tom was discharged with unseemly haste from the out-patient physiotherapy and while I don't doubt there are far more needy cases in their long, long waiting list, this experience sits in the 'not good' half of our NHS experiences pros and cons list.

So there you go Smiths - there's your mention. You are deserving of so much more though - this weekend has been a much needed shot in the arm for us all. Thanks.

Easy like Sunday Morning...

2007-04-03T19:49:00.000Z

Here's a little movie Tom and I made the Sunday before last. I'd like to pretend that it's the kind of things we get up to every weekend. It makes me out to be quite the dynamic, funtime dad. Participatory food preparation in the kitchen followed by amusing games.... it's all educational play in our house.

Yeah right.

The closest we get to fancy kitchen action most Sunday mornings is slumping in front of 'Big Cook Little Cook' re-runs. I don't know what got into us that day - a combination of good sleep and those poppy seeds we were chomping on. Rest assured, normal service has since been resumed.

If any of Tom's speech therapists watch this; I really didn't help him out too well with the questioning about the breadmaking did I? Sorry Katherine, Jacqueline and Tanya. I will do better next time.

Sunday Morning Movie on Vimeo

The decision that never was

2007-03-28T19:16:00.000Z

I was early to my desk yesterday morning, fingers hovering over the keyboard ready to pound out a fuming diatribe about the Healthcare Commission, PCTs and all the usual Dark Forces that are lined up against us. I made a few false starts... a few sentences about a phone call that told me little that I hadn't already suspected... but I kept deleting them. I just wasn't angry enough. I'd prepared myself too well for the expected disappointment.

As it was the phone call didn't even bring the anticipated rejection; it was actually to tell us that the review proper was just about to start and that what was being examined was the process rather than the decision - which I kinda knew. That the process involved flawed thinking, erroneous interpretation of data, ignorance of the facts and dismissal of expert opinion is, I would hope, where there is thin glimmer of hope. I suspect, however, that the PCT are going to get marks for effort - they did try to think, after all... and they collected some data and expert opinion which, although the interpretation flew in the face of national trends, accumulating evidence (check out PubMed folks) and said opinion was still, erm, done.

So I didn't get round to this post yesterday. Just as I was building up a head of steam a sleepy smiling face appeared in a bedroom doorway and I got distracted. A few cuddles cheered me up, as did Tom's running commentary that flowed uninterrupted through getting dressed, washed and out of the house.

It still sucks that our PCT is broke. It still sucks that we have to be among the few pioneers who discover all the bizarre quirks that accompany life as a part-NHS, part privately funded implant family. What doesn't suck at all is the jabbering fruit loop that is Tom.

At a slight tangent - but this is where my thoughts led so let's go with it - the whole jabbering offspring thing made me think of Schuyler and her Monster. Rob relays his morning's TV viewing when he heard a mother complaining about a child reading and talking too much... you can't make it up. Perspective is an interesting thing - particularly when kids are involved.

Waiting Again.

2007-03-23T07:35:00.000Z

Early next week, after 7+ months of (presumably) gradual ascent in someone's in-tray, we should hear the outcome of the Healthcare Commission's Independent Review. I have touched on their place in the grand scheme of things a couple of times at least (I wasn't so hot on the labels in the early days). They're frequently described in the press as the 'Health Service Watchdog' which isn't a bad description but, considering the size of the Health Service, I wish they had more than one dog to watch it.

So we had to complain about our treatment, or lack of it, by the local PCT. We compiled what I'm tempted to call a dossier about the PCT's exchanges with us, particularly the appeal panel session itself and the increasingly isolated position of our PCT with regard to bilateral implantation and meningitis.

I don't know how this will end. In retrospect, it seems to me that we took something of a scattergun approach to the complaint, including as many possible angles in the hope that one of them was the required trigger. Like I've said before, these dealings with bureaucracy feel like a particularly cruel children's guessing game. There is a right answer, they're just not going to tell you the question and will, if the mood takes them, change the answer if you get too close with your guesses.

I'm not sure what range of actions are open to the Healthcare Commission. We give short shrift to the dream scenario, where an outraged 'Commissioner' demands the PCT apologise and reimburse us for Tom's second implant forthwith. Instead we kid ourselves that it's a done deal and the outcome will be along the lines of 'while it is unfortunate, the PCT were within their rights to...'. And so we prepare for the next step.

'Here you go'

2007-03-20T20:22:00.000Z

I thought I'd record a couple of language anecdotes before I forget them. They're not poignant or immensely significant - they're just typical of where Tom is at.

Curled up in Tom's 'Racing Car Bed!' (it is always pronounced with an exclamation mark) this evening, Tom and I read perennial favourite 'The Three Little Pigs'. The first pig had just met the little girl and, spotting him for the mug he was, she'd sold him a load of straw. I read the next line -

''I will make a house of straw' said the first little pig'

and Tom dived in with the next ...

'So he did just that!'

Hardly remarkable I know. Tom is so familiar with the story - I do the whole pausing for him to finish the line thing and getting him to describe the pictures so he can pretty much tell it himself. What struck me though was that this was just a throw away line that I've never emphasised - it just links the interesting bits together but Tom has absorbed it without being 'taught' and knows its right place.

This morning Tom was sat on the bottom step and I was putting his shoes on him (pretty much the only piece of clothing he will deign to let a grown up put on him without a fight) and Tom went into a little monologue as is his wont -

'Lady put the shoes on Tom'
'Lady said 'Here you go Tom''
'Daddy said 'Thank you lady''

And so Tom recited his account of the purchase of his latest pair of shoes - an event that took place weeks ago. This made me chuckle for all the reasons it does any parent: he picks the oddest things to remember and natter on about, he uses a phrase that we must use a lot ('Here you go') and applies it to a memory in an appropriate way but where it wasn't used originally,

...and he's learnt some manners somewhere along the line too.