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...?

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...'

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

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

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

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

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

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)

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

'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...

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

'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...

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

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?

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

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

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...

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'

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!'

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.