Thursday, December 20, 2007

Last man standing

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.

  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. 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.
  7. 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.
  8. 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.
  9. 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.
  10. 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.
  11. 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.
  12. 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...?

Friday, December 14, 2007

Eat yer greens!

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.

'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...'


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.

Wednesday, December 05, 2007

Language for all occasions

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.

Monday, December 03, 2007

Big Days

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.

Tuesday, November 06, 2007

TV time again

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.


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

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.

Thursday, October 25, 2007

Running Commentary

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 - and she's great so go read!

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

Thursday, October 11, 2007

National Healthcare (abridged)

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.

Tuesday, October 09, 2007

Mummyless weekend

'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'

Saturday, October 06, 2007

When Mum's away...

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.

Friday, October 05, 2007

A Tracey Day

'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.

Tuesday, October 02, 2007

Tom media watch...

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!

Thursday, September 27, 2007

A Windy Day

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.

Tuesday, September 18, 2007

Do you think Tom watches too much TV?

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.

Friday, August 24, 2007

Dance to the Music

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.

Friday, August 17, 2007

Of bedtime and lullabies

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,
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.

Monday, August 13, 2007

Careless talk...

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?

Tuesday, August 07, 2007

'I am Donkey'

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.

Monday, August 06, 2007

'When its my birthday I be three!'

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.

Wednesday, August 01, 2007

A response to Fintan's comment

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.


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.

Monday, July 30, 2007

More on the Today Programme

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.

Wednesday, July 25, 2007

A Day at the Office

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...

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 - 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.

Thursday, July 12, 2007

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

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.

Monday, July 09, 2007

If you could design a weekend...

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?


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.

Friday, June 29, 2007

World of Sound

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.

Tuesday, June 26, 2007

I think I've joined a cult...

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.

Friday, June 22, 2007

An important piece of history

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.

Thursday, June 21, 2007

Nagging doubts put to rest

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.

Thursday, June 14, 2007

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

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...

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?

Tuesday, May 29, 2007

Of charities and web friends

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

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.