Thursday, December 18, 2008
Very Steiner moments
Tom's first nativity was on Tuesday morning - a 15 minute burst of circle time with singing and led movement. Tom was a shepherd along with a couple of his wee friends (how Scottish are we becoming). I watched his lips mouth a good few lines of the songs and he was right up with the 'shepherds sleeping', 'shepherds dancing round in circles' and 'shepherds wave their hats in the air like crazy Afghans' moments. 'Precious' doesn't begin to describe it. There were a couple of manful stares at the ceiling to abate the tears, that's for sure.
Not so Steiner
The TV has not quite left Tom's life - greatly reduced and restricted but still popular. His imaginary play is a complex mix of movie plots, friends, Ruddington and Edinburgh and travel in between. To illustrate the pervading nature of TV's influence and how we must be marked at school as 'not quite there with the program yet' -
We were having a chat last night and I told Tom that yes, after he had his tea, we would play with his new city.
'Trust me..' I said
'You can't trust anyone' he replied, as quick as a flash.
After a little investigating we discovered that this is one of Kaa's lines from the Jungle Book - amazing us that he'd taken so much in and reminding us that we really must put a cap on that...
7 sleeps - the tension is building.
Tuesday, December 02, 2008
Why there are two and what they are each focused on is something of a mystery - this is the second time they have visited in the four-or-so months we've been here. They are very keen on assessing Tom and he quite likes the whole assessment process so it all seems mutually agreeable at the moment. They show him these books with four pictures, say some slightly strange statement and he points to a picture. Then all these adults smile at him and pay him even more attention.
Occasionally the adults stop and talk amongst themselves. Tom doesn't approve of this and quickly makes sure all the adults get back on task and get on with this picture game. The picture game is considered A Good Thing.
The pictures are some variant of a test for auditory comprehension - something like TACL I think - and Tom wouldn't let them stop until they'd got to the end. By that stage the questions were asking him to identify where 'neither the elephant nor the boy are standing on one leg' (or something to that effect) and other similarly tortuous, elaborate sentences.
There were a number of occasions towards the end of the test where Tom's finger firmly jabbed at the wrong picture. Before we knew how these tests worked, such failures left us concerned; noting down vocabulary and phrases to try to incorporate into everyday speech.
Then you get to realise that these are tests designed to work across a significant age range and you're supposed to keep going until you fail - that's how you work out the age equivalency.
So how did the wee man do today? Well, he left 'age-appropriate' in the dust and came in equivalent to a typical hearing seven year old.
Not bad for four and deaf really is it?
And this might be partly why the therapists like to stop by. Not much therapisin' needed and lots of just being proud of a smart little boy who knows how to listen.
Tuesday, November 25, 2008
I’m met with a bright inquiry from Dawn –
‘So I hear you’ve got a new cat at home!’
Bemused silence. Nik’s fur allergy ensures such things are highly unlikely. Tom’s description of our new cat had been particularly vivid – to the extent that the tears he’d reported to us had actually been due to his upset at our new kitten being ‘too little to be left at home alone’.
The kitten in question – a slightly ragged towelling toy dating back to Tom’s birth – had become very popular for a day or two (acquiring the name ‘Israel’ along the way) and had clearly morphed into something much more meaningful when I wasn’t looking…
I take it such things are par for the course? Are we edging into imaginary friend territory here?
We’re all OK, by the way. Been a little quiet, I know, but we haven’t dropped off the earth yet… which is because of our stickiness since you ask. This was a recent ‘why?’ question from Tom. He seems to have grasped the earth is round somewhere along the line and shows a somewhat obsessive interest in maps and globes, and our place on them. Out of the blue a few weeks ago he asked why we didn’t fall off the earth.
Now I don’t want to be told this is perfectly normal – I want to remain stunningly impressed by the deduction that there might be an issue with the whole round earth/staying on it thing.
Around the same time as this question was posed the nights started drawing in to before Tom’s bedtime and he developed a dislike of being outside after dark. As we gently explored the reasons for this fear, we got the answer that he was frightened of rockets falling on him. How has he put that thought together?
Interesting times at our place.
Monday, October 13, 2008
One evening, over dinner, Nik and I shared an anecdote about Tom and I was (lightly) reprimanded about the story's absence from the blog. Parents are allowed to do that (so long as its 'lightly' of course).
So here is the story.
One Sunday morning Tom and I were preparing to head out to the park.
'Now Tom, I want you to eat your breakfast before we go.'
'But I'm not hungry.'
'I'm not taking a bag with me so there won't be any snacks at the park.'
'I'm not hungry'
'I don't want you saying you're hungry as soon as we get there.'
'Now are you sure...' - round and round a few times...
So we get to the park...and within five minutes
'But I asked you to eat your breakfast... I said that I wouldn't have a snack for you...'
'Daddy can we talk about the childcatcher?'
'But I told you that you had to have your breakfast'
'What do you want to say about the childcatcher?'
Needless to say I had also brought the snacks.
Wednesday, September 24, 2008
After a less than happy week or two at his new school, Tom has has a really good day. No half-stifled tears or requests to stay at home - Tom approached the day in Kindy with eagerness and it looks like the day responded in kind. From what we can pick up from his wonderfully fractured description of the day it looks like he had a Good Time.
It would appear that there was a scale model of Arthur's Seat created in the sandpit - partly inspired by his explanation to Dawn, his teacher, that he was wearing his 'Arthur's Seat boots' I presume (there is a side story here about Tom's ascent of said Seat a weekend or two ago which led to the need to purchase boots). It would seem, according to further reports, that a boy named Matthew may or may not have knocked Arthur's Seat over on a number of occasions.
We also learned that drying the pots is Tom's job. He may, over time, learn not to disclose such a level of helpfulness with such eagerness. I hope not - Nik reports he's a particularly thorough cleaner at the moment.
Signs are good...
So here are a few photos - as requested by Hetha. Well, she didn't request a few but it has been a while.
Firstly - the importance of donuts cannot be underestimated. From a birthday trip to Blair Drummond where giraffes and rhinos and stuff were really cool until we found the dodgems and the sweet, life-giving sugary snacks.
And this was on the beach in Gullane - a bright and sunny Scottish day in late summer
And finally, Tom atop the Seat. We headed up there a couple of weekends ago while Nik had a well deserved lie in. I think a few of the sweating, heavy breathing adults who also made the early morning ascent were a little disconcerted to find a 4 year old there before them, munching on a piece of cake.
Tuesday, September 16, 2008
You may have picked up a ‘tone’ towards the end of that paragraph. It’s taken a while and a number of posts to get round to it but the admission is long overdue. Sometimes it would be nice if Tom ruminated and reflected for a moment. Silently. Just stopped for a breath occasionally – that would be enough. How can there be so many words in one so young?
Of course, this is a gross exaggeration. There are moments in the car perhaps when he’s gazing slack-jawed out of the window or licking the back seat to get the last of the sugar that fell from a doughnut three weeks ago. And what do we do?
‘Are you OK Tom? What are you doing?’… and it starts all over again.
I could regale you with some of the more hilarious exchanges but they would need so much back story and context that the humour would be lost. You had to be there.
A couple of less funny topics have sprung up though and I would appreciate a bit of advice if any reader wouldn’t mind. I’ve tried bringing the subject up in a couple of human-to-human conversations recently and it has jarred a little to say the least.
So we were innocently looking at wedding photos a week or two back and happened on a photo of my grandfather. I explained who he was and that he’d died. Death isn’t an entirely new concept to him – plants have gone all pale and brown on occasion and he has had similar conversations with a grandparent or two about their ancestors – but his curiosity about the matter had not been sated. And so the interrogation began.
I tried to stick, gently, to straight facts. Largely speaking, and perfectly typically for a four year old apparently, Tom was mostly interested in the practicalities of what dead people ‘do’ and where they are now. At one point I muddied the water with a rather abstract explanation about the benefit of memories and ‘pictures in my head’ of my grandparents. He, of course, wanted to see the pictures.
The subject has been revived on a number of occasions since, the most traumatic of which was a conversation which led to Tom tearfully saying ‘I don’t want to die.’ I wish I could remember how we got to that point; it certainly wasn’t preceded by me saying ‘you’re going to die’ or even ‘everybody dies’ – he made a leap of logic from somewhere far less obvious. Smart kid.
The tears and trauma, for Tom at least, lasted a few seconds and we got onto the safer ground of just how long it might take him to finish his toast. Did I mention that Tom is a slow eater? I think it might be connected to the talking thing.
So death has quietly slid off the conversational agenda over the last few days… to be replaced by meningitis.
Nik and Tom were invited to a photo-op event by the Meningitis Research Foundation. The event, which took place yesterday, involved children who had survived the disease throwing beanbags at a human sized purple bacterium (‘the guy in the meningitis suit’).
To prepare him for this, we showed Tom a recent newsletter from the Foundation, featuring said human-sized bacterium. And the questions began. And they don’t show any sign of ending any time soon. So far we have been called on to give the following answers:
- meningitis isn’t really that big and doesn’t wear running shoes
- meningitis is about as big as little Cat Z in The Cat in the Hat Comes Back
- he had meningitis when he was little
- it made him very poorly, involved a ride in an ambulance and a stay in hospital
- it made him poorly by breaking tiny parts of him inside (I really regret starting this one – how do you explain cellular damage to a four year old? What was I thinking?)
- doctors can see meningitis with special machines – that’s how they could see it when normal people can’t
- we don’t know how it got into him; it was possibly his ears and probably wasn’t through his bottom
- doctors made him better with medicine called penicillin (he was keen to know what kind – Tom is something of a medicine connoisseur)
- it killed the meningitis
- its not in him any more – its gone. Its just gone (trying to head off explanations about cellular ingestion)
- he got better
We haven’t got as far as joining this up with his ears and deafness but I don’t doubt that its just over the horizon. He has taken it all in his stride thus far and I hope to God he continues the same way.
It’s just part of his story and brings no painful recollections or repetitive nightmares. That’s just us. He asks – so we tell him as best we can.
So what do you think?
Monday, September 08, 2008
The course of this appraisal has not run smooth and has kept families on tenterhooks, what with their vacillations and oscillations. First there was the excitement of last December when the first appraisal guidance report pointed to bilateral implants for prelingually deafened children, post-meningitic children and children and adults who are blind. It was a big step - but still left hundreds of children and adults out.
Ahead of the second appraisal document's publication in March 2008, someone seemed to get a little anxious about the bill and the prelingually deafened children disappeared from the list. News of the credit crunch had reached the Health Service and belts were being tightened. Lets not worry about the future and think about the bottom line now...
So when the Final Appraisal Determination (where did they get these names from?) was published last week, I must admit to not feeling too optimistic about its contents but...
Well, you take a read.
There's another week to go before final publication and this rollercoaster may have another twist, sheer plunge or two to come but it would seem that, barring appeals from the formal consultees, the proposals are beyond what could ever have been expected.
All children with severe to profound deafness to get bilateral implants along with all blind adults and those with heavy reliance on hearing due to other disabilities... Note - there's no need to make special mention of the post-meningitic; the criteria are so broad. Now that is fabulous news. It brings with it a number of concerns - of which more in later posts - but firstly, on top of that great news, there is this statement:
Sequential bilateral cochlear implantation is not recommended as an option for people with severe to profound deafness. People who had a unilateral implant before publication of this guidance, and who fall into one of the categories described in 1.2, should have the option of an additional contralateral implant only if this is considered to provide sufficient benefit by the responsible clinician after an informed discussion with the individual person and their carers.Now that sounds like an opportunity for more ambiguity and a continuation of the postcode lottery for a significant number of individuals - those who had the misfortune to get deaf at the wrong time.
The reason is all related to the QALYs and the cost of the second implant. Two ops cost enough more than one to tip the cost-effectiveness balance and, given the approximate nature of the calculations (I'm still no nearer understanding how you actually assign numbers to quality of life with anything approaching certainty), it pushes the cost of simultaneous implantation beyond the acceptable boundary.
Anyway, my fellow CI dad Dominic has put it all far more eloquently on http://www.2ears2hear.org.uk - he's the one behind the words, I just do the grunt work with the website. If you get a chance, there are a few interesting case studies on there too including one that gives a slightly different perspective.
Wednesday, August 27, 2008
Working out Tom's schooling up here in Edinburgh was a major deal for us - a big leap into the unknown. It took us away from Tania with all her incredible personal support and marvellous liaision work with the school in Ruddington and it took us away from a group of teachers and professionals who took the time to work Tom out and to ease his transition into the mad world of pre-school.
Finding the Steiner school has made what threatened to be an anxious period somewhat more straightforward.
Describing Steiner to family and friends has been a humorous experience. There have been a couple of 'in the know' friends who have responded with unbridled enthusiasm and cries of 'if only we could...'. A small number think we might be joining a cult and there are those who've needed potted summaries from the ground up.
And it hasn't been so easy to explain beyond a phrase I've found myself using time and again - 'I wish I'd gone there' and I'm so pleased that Tom has that opportunity.
It is the type of school that upholds and lives by those ideals you ponder on and yearn for when you despair of the commercialisation and materialism that so readily engulfs childhood. It is the type of school that will permeate into our lives in ways that prehaps other schools wouldn't and in ways that can only benefit us all.
I think I'm more excited than Tom...
Anyway... the last of Tom's birthday treats arrived at the tail end of last week. I took Friday off and we went to see 'The Gruffalo' - a play based on the hugely influential (in our house at least) book of the same name. Tom was stunned into silence again - barely moved for the full 50 minutes. Live theatre is so much easier than movies or TV for him language-wise, it is hardly surprising that it has the hold on him it does.
A second treat followed on Saturday... Safari Park time and, most importantly, an opportunity for Trevor to meet the family.
Trevor the giraffe is so important that we have a spare. He's in the back of a cupboard somewhere with gleaming white fur and well distributed stuffing. He no longer looks anything like the original and we have developed a whole 'health spa for giraffes' cover story should we need to carry out the exchange.
Anyway - Tom showed a great deal of enthusiasm for the animals... at least until he saw the dodgems and other fairground attractions. The first chink in this new-found enthusiasm for all things natural came in the rhino enclosure where, having seen his fill of these beasts and the graceful antelope that also lived there, he glanced out of the back window and shouted excitedly
'Look!! A Mercedes!!!'
Yes - more interested in the car following us. He's a proper boy isn't he?
Monday, August 18, 2008
So we finally got moved four weeks ago and, after a catalogue of delays and general buggering about on the part of numerous conveyancing and real estate ‘professionals’ (and I use that term pretty loosely), last Friday we actually sold the place back in Nottinghamshire. It only took a year.
Amid the stresses, strains, thrills and spills of moving have been any number of moments when I’ve thought ‘I really must blog that’. But those boxes won’t unpack themselves and, with a
So… a few potted highlights:
Meet the gang
Tom talks about ‘the old house’ and Ruddington (the village where we lived) a lot. Summer might seem like a convenient time for moving to a parent but, for a four year old who has just fallen in love with this whole nursery/school thing, it just accentuates the ‘differentness’ of this new place and the lack of playmates.
Tom’s approach has been to elevate previously ignored soft toys to the status of friends. The gang includes Trevor the much adored (and frequently filthy) giraffe; Steve, a teddy bear with an irritating jingle; a gangly frog called Eyeball; Mister Cat and a few other recent additions including a koala with unfortunate chalk marks.
We have just about manage to restrict the party to one or two for outings but, when Tom is negotiating the flat in his pushalong car, the whole mob gets crammed in the back.
Personalities have been developed – Trevor is the devil-may-care somersault expert and toy most likely to slide down a muddy bank while the koala has rapidly developed a level of authority-defying cheekiness – and we’re certainly not discouraging this endearing foible. Indeed, it gets every day started with a smile.
Tom’s bedroom is at the opposite end of the flat to the bathroom and our room and, every morning, Tom drives all his cuddly friends to the toilet where he, courteously, holds each of them up to pee before he finally takes his turn. We lie in bed next door, giggling as he provides the appropriate sound effect.
So we arrived in Edinburgh just in time for the festival and, while I squeezed a few evenings of grown-up entertainment in while Nik and Tom were in Geneva, the highlight thus far has to be Tom’s fourth birthday treat - The Bubble Guy - http://www.bubbleguy.com/bubbleman/ .
Bubbles filled with smoke, bubbles inside bubbles, kids kissing bubbles, people inside bubbles – what’s not to love about that. Watching Tom’s face and seeing him completely enraptured for nearly an hour was the perfect gift for us – and I hope it was some compensation for him given that his party consisted of playing pass the parcel with three grown ups and sharing his cake with a line of stuffed toys in party hats.
So I’m writing this during one of my all too frequent stays in a dull
I phoned home about 6pm, hoping to talk to Tom before he goes to bed. Occasionally he’s keen to talk and answers questions happily, telling me about his day and his many needs. Today, for the first time, he answered the phone and shrieked happily to Nik - ‘It’s daddy!!’
It’s a measure of how successful Tom is with his implants that it took me some minutes to realise what an achievement this is.
Wednesday, July 16, 2008
So, as my inexorably slow train journey home dwindles on (a door problem at Market Harborough – lots of increasingly tense commuters unable to get off) here are my memories from that early period:
- Learning to ride without stabilisers – taken to the top of a hill and just let go
- Falling in a dry river bed, dissolving in snot and tears and being helped home by a ‘big boy’
- Purple walls in the lounge
- My mother picking me up from nursery in a red plastic rain hat
- Telling people I didn’t eat eggs because they made me throw up (I don’t remember the puking but I do remember telling people all about it)
- A homemade cheesecake with a base so thick that it needed industrial tools to cut it
- Sitting on the (black leather?) sofa with my dad trying to teach me to breath without opening my mouth
Some, or all, of these stories may well have been embellished with retelling over the years although I’ve tried to pick the ‘genuine’ ones (Lil, Pete it’s over to you). You know how it is though, family legends build up over time and I can no longer be sure which is which.
It has got me round to pondering on what Tom will remember of this period. In a few weeks he’ll be four (cripes, where did that come from); slap bang in the middle of the period I’ve been recalling and around the age at which ‘earliest memories’ are stored away for later recall and, well, his short life has been pretty eventful. Does that make it more likely to stick in his head?
In a few short days we will, finally, be in
Tom already surprises us with random recollections from months gone by so who knows what will stick and what will drift away into the ether. Undoubtedly it will be things we least expect, matters car-related and, equally certainly, we will reinforce the events that stick out for us – the things that make it a happy place in our collective past rather than the dark periods that we try to forget. One of those happened last weekend and will be drilled into Tom in the same way as my dubious victory in a Blue Peter competition (some time in the '72-'78 period for those who know their Blue Peter) has gathered an undeserved magnitude in my story.
Last Saturday, minor local celebrity that he is, Tom opened a fete. He cut the ribbon and everything. How cool is that? Opening fetes before you’re four? Now there’s one to tell the grandchildren.
Friday, July 04, 2008
Rosie and the Mufessor sent us the results of Tom's assessments and they demonstrate just what a marvellous creation cochlear implants are, how justified we were in pushing for bilaterals and what powers of concentration Tom has developed. This last one is a surprising but not unwelcome byproduct of the long hours of therapy, mapping and assessment Tom has endured over the past couple of years. The study in York took three hours, interspersed with three breaks, and our wee man powered through - engaged and compliant throughout.
In terms of the results - they quantified what we see every day. Tom is performing incredibly well in terms of left-right discrimination and, while nowhere close to normal hearing children, he can discern speech through quite a significant level of noise - the benefits of bilateral implantation that we were so keen on him acquiring.
When Rosie's study is complete, I fully expect it to join this recently published paper (abstract here) in the growing pile of evidence that demonstrates the bleedin' obvious - two ears are significantly (QALY and scientifically speaking) better than one.
At the end of our day out in York back in April, Rosie took a picture of Tom in the hallway outside the 'ring of sound' room - we were in an ajoining room getting our stuff together. We kept hearing Rosie giggling, with Tom joining in as is his wont.
'Tom... could you take your hands out of your trousers for this picture?'...
Rosie sent a lovely 'Junior Investigator' certificate with the report; glossy with a portrait of Tom at its centre. Mercifully, it has been cropped at the waist but, given the angle of the arms, its quite clear where his hands are.
Thank heaven for little boys.
Friday, June 27, 2008
'Hey - what are you two talking about?'
'We're talking about work sweetie'
'Well stop talking about that!'
'OK - so what do you want to talk about?'
A big smile broke across Tom's face
'I want to talk about cars! - Let's talk about the noise a big engine makes!'
Yay. It's the weekend. Down tools everyone.
Monday, June 23, 2008
This was supposed to be the entry that opened with an excitable, emphatic 'We're in Edinburgh!'... but...
Instead I'm sat at a borrowed picnic table that's serving as a temporary desk, surrounded by empty shelves and wondering just how the English house-buying system ever evolved into this drawn out torture. Like with any of these things, it's the uncertainty that gets to you. Our buying process is currently suffering from information constipation - there seems to be a hold-up a couple of links down the chain that wasn't as close to not being a hold-up as we were led to believe... so plans have got out of sync and, well, we now have the minimalist space we once dreamed of (and there's a little too much echo), a rather limited array of crockery... and I am typing at a picnic table. As you might have guessed, we're a little ahead of ourselves and the majority of our possessions are packed up and gone.
Tom, for the most part, is coping very well with these unsettled times. There's been the odd wobble - the questions about whether he'll still be going to his school and whether Mrs Charlton and Mrs Henson will be there - but for the most part he's finding the process exciting. We were nervous about the whole process. There's a story my parents like to tell about moving house when I was around two - I refused to remove my coat because I wasn't stopping. The length of time that this went on for has, I think, crept up over the years. But we have been sensitive to the little guy's feelings and Nik has done an incredible job of preparing him. We learned very quickly that packing stuff without his knowledge would meet with an adverse reaction and so he has been involved at every step. He helped make the boxes up (and hid in each one), pack some of his toys (his first line one morning was 'I've packed some more of my toys!' after we'd left an open box in his room) and load his push-along car on the van.
The biggest sigh of relief came with the dismantling of the beloved racing car bed. Tom dived in with his screwdriver and, in five minutes, the job was done. He's even loving the whole camping on the floor thing. All we've got to do now is move...
So why Edinburgh? Well, if you're in the UK and follow such things, this might be reason enough but we have a few others too. The company I work for has opened an office in the city (on the Royal Mile no less) and, after four years, I am done with working from home. Nik did her studying in Edinburgh, loves the city and she has family there too. For Nik and I then, the city is perfect but what about the wee man?
First and foremost, there is a pretty solid financial incentive. When we move, Tom's 'private' implant will no longer be our responsibility and will become state funded. I've checked. Twice. Just to make sure. If Tom had had meningitis in Scotland, under current legislation he would have had bilateral implants automatically and we discovered that this level of support applies to incomers too.
So that's good news for him... the sort that leaves a bittersweet taste given the number of children and adults with single implants in this country who don't have this option open to them (and NICE are yet to rule either way - current expected date September 2008 with a 4th appraisal committee meeting on 17th July). We have always counted ourselves fortunate in being able to push ahead with the second implant in spite of the decision made by the PCT and have prepared ourselves financially but this is an enormous relief and provides some stability and assurance. Until the NHS goes belly-up that is.
We've also found a wonderful school a few minutes walk from where we're going to be living. It looks like a fabulous fit for Tom - a little offbeat, small and focused on the individual. It's worthy of its own post but here's a primer on Rudolf Steiner schools. I've just watched one of the dvds posted there and discovered that Tilda Swinton is a Steiner parent. Now I'm not one to get starstruck but she does say the very thing I was going to finish on - the school makes you wish you went there and you can't get a much more positive recommendation than that.
Monday, June 16, 2008
A split second of confusion - he's not used to either of us beating him to be first up - before he said 'I will go back and get the card in just a second'... (he and Nik had stowed my Father's Day card under his pillow because, obviously, it would be much cuter for him to fetch it out himself and had nothing to do with avoiding being disturbed herself!).
I turned and said 'Go and have a wee-wee'
'I will' came the reply and off he went.
Tom is really comfortable without his 'ears' on first thing in the morning. I think he enjoys the cuddles without the paraphenalia (he uses the Advanced Bionics bodyworn with a single harness holding both processors) and his lipreading is pretty impressive when the context is limited and the routine so well established.
A cute moment to savour.
Saturday, June 14, 2008
Firstly, and most personally, the hour-long burst of races was a testament to the incredible progress that Tom has made in terms of his balance and mobility since the meningitis. His running stride is elegant and, to my only-slightly-trained-eye, straight and true. For evidence, I submit the following:
These two pictures were taken during the final race which, according to the program, was the 'Let's have a drink in the garden... but watch out for the bees and wasps!! race'. Which leads me neatly on to the second subplot - the event was devised by a comedy genius - or geniuses - who had come up with a series of eight races. Under the theme 'Gardener's World', each race had a subtle twist designed, presumably, to keep the interest of three and four year olds. In keeping with your average Pixar production, this had the possibly inadvertent effect of also making adults howl with laughter.
The first race set the stage perfectly - the 'You need to get a big bag of compost home from Asda' race (US translation: Asda is a proud member of the Walmart family) saw half a dozen earnest kiddies in pushalong cars grinding their way down a 50 yard track with, seemingly full bags of compost strapped to their roofs. Aaah heck, you need to see it...
Note the stockcar style being adopted by some of the drivers - it really needed to be seen to be believed. Little legs sticking out of the bottom of the cars, going ten to the dozen and going nowhere fast.
Every race had a new twist... 'Now collect your plant pots in your wheelbarrow' needs little explanation. Nor does the 'Your plant needs water to help them grow... you will need your watering can' race. Suffice it to say, it kept us all highly amused and utterly refreshed by the lack of guile or competitiveness on show. I lost count of the number of times that the leader, streaking ahead and only yards from the line, stopped and waited for a friend. One little boy, in the 'Time to cut the grass... again... can you mow in a straight line?' race, flew in the face of convention and worked his way across the track in neat strips, turning neatly at each side just as he'd seen his daddy do.
I had time to enjoy that... seeing as Tom had creamed everyone in that race.
Did I say it wasn't competitive?
Please note the 'Tongue of Concentration'.
Given that the week to come is the last for Tom at this school, sports day was a sweet finale to his first school experience. All fears about how he would cope in a mainstream environment have been dispelled. While supported well by the school, he has needed less and less individual or special attention as the term has worn on and will excel in mainstream education.
So thank you James Peacock School, Ruddington. We will miss you.
Wednesday, June 11, 2008
This one actually dates back to an Easter trip to Grandpa and Savta. Grandpa and Tom were bestest buddies for a week. Grandpa has 'holiday cars' - you can only begin to grasp just how exciting that is.
There has been another trip or two too - hasn't it been a long time? Or are we just having too many holidays?
Tom gave my mum a run out on the beaches of Normandy.
It hasn't all been excitement and play. Well actually, it just about has as far as Tom is concerned but there was one sad day in late April. My somewhat neglected but kind of loved car failed its annual MOT test in dramatic and expensive style. This photo is from the drawn out goodbye ceremony and endless run of 'last plays in daddy's car'.
He has since told everyone about how daddy's car went to the garage and didn't come back. I thought he might pine a little but he shows no outward signs of grief. I think his passion for 'the-car-that-flies' has seen him through. It's not as if the obsession needed any encouragement but Nik's aunt, uncle and cousin did it anyway and took us all to see the stage version which is currently touring the UK. Given Tom's tendency for role play and completion immersion in character, it won't surprise you to know that he went to the theatre dressed as Caractacus Potts.
He has told his teachers once or twice that that's his name.
So that's the story of the last month or so... one of car-obsessed, carbon-footprint creating travel and revelry. Tom has adapted to nursery extremely well and - whisper it - he already seems to be at a place where he doesn't need any additional support. That's not to say it isn't on offer or hovering in the wings but we've had the sort of conversation with educational professionals that starts 'I realise that I don't treat Tom any differently to any other child...' and 'I have never had a deaf child that I've thought could do this well...'.
Things are going well... so its time to shake things up.
We put our house up for sale in the same week that the run on Northern Rock began. Not the finest or most astute piece of timing but, hey, when you've gotta go...
Nine months and several price drops later it has sold and we're now a couple of weeks away from moving. Boxes are piling up, lists have been compiled and plans made. By the end of June we'll be living in Edinburgh and starting a whole new chapter. Tom's needs have been at the forefront of our minds throughout the process and, now I'm back in the blogwriting groove, I'll explain a little more.
Monday, May 12, 2008
The programme follows ten disabled young people as they enjoy/endure a month-long trek across Ecuador. It is some mighty powerful TV - heroic endeavour mixed with very real displays of youthful frustration in circumstances that would test the most able bodied.
There are three deaf people in the group including Jeremy, a cochlear implant user from not so many miles from here. Towards the end of the first episode, the very real difficulties they experienced while working within a team were well portrayed and contrasted powerfully with the more obvious problems being overcome by the amputees and wheelchair bound.
Prime time cochlear implants - who'd have thought.
Wednesday, April 23, 2008
A year ago I put together a montage of video clips and photos to show that progress and posted it here. There is now a sequel. It isn't quite as poignant a journey - its my opportunity to be super-indulgent dad.
So without further ado -
Tom's next year from Jason B on Vimeo.
Thursday, April 17, 2008
A Blogger Tagging Game
1. The rules of the game get posted at the beginning.
2. Each player answers the questions about themselves.
3. At the end of the post, the player tags 5 people and posts their name, then goes to their blogs and leaves them a comment, letting them know they've been tagged and asking them to read your blog.
I have to answer questions and people I tag have to answer the same questions, so here I go.
What was I doing 10 years ago:
Before I was a little boy, I was a baby. Then I was in mummy's tummy. Then I was a little boy and you were a little boy and you lived with Nanny and Papa and you played with me.
(Tom is not quite getting the 'not existing pre-birth' thing. He has also mistaken 'born' for 'bought' which is quite funny).
Me? 10 years ago I was a school teacher and still doing the job that I'm occasionally nostalgic about. It was '99 when the wheels came off.
Five Snacks I enjoy:
- Cake.... with icing. First I eat the icing then I leave a trail of the cake around so that daddy knows where I am
- Apples - really, I do
- Ice cream and I like to hold it until its running down my hand and possibly the walls too
and me? yeah, pretty much the same except faster and tidier
In the real world:
- Raisins and when you leave them in the sofa and on the windowsill they look like dead flies
- Fruit... lots and lots of fruit
- and cake
- and biscuits
- and sweets (trans. 'candy')
Things I would do if I were a billionaire:
Buy sweets. And cars. And biscuits. And treats. Lots and lots of treats.
I'm with him on the treat thing
Five jobs that I have had:
- My job is playing and when I'm pretending to be daddy its fixing.
- Scooby Doo
To fund these flights of fancy for Tom I'm a 'Usability Consultant' and if you know what that is, let me know because I'm not entirely sure.
Back in the day, I've been a farmhand, a school teacher and 'that web guy'.
Three of my habits:
- Asking 'why?' ALL THE LIVE LONG DAY
- Chitty Chitty Bang Bang
- Biscuits. Less habit, more 'addiction'
Me? Too busy to have habits.
Five place I have lived:
- The little house where I lived when I was a little baby
- This house
- Where we'll live if we ever sell...
Daddy lived all over the place (its an Armed Forces child thing thats turned into a 'can't make my mind up' thing)
Add one new part:
And this seems the most sensible new part...
What are the best pieces of advice you could offer parents of children newly diagnosed with a hearing loss:
1. Read a lot. Ask lots of questions of professionals and of other parents and then make decisions.
2. Do not let your child’s hearing loss define him/her.... or *you*. (Couldn't agree more with this one so I'm not going to change it).
And all the likely suspects are already tagged I think!
Tuesday, April 15, 2008
Nik is doing faux-grumpy... which may actually be edging into genuine frustration with his stalling tactics.
'Tom... you're making mummy cross now. Are you going to eat your dinner?'
'At school Joe eats outside... in the drain'
... mustn't look up... mustn't make eye contact...
'If you don't eat some more potato, there will be no pudding Tom...'
'Harrison... wears girl's shoes'
Must... resist.... must not laugh...
We eventually leave him to it and retire to the kitchen. I threaten to eat the jelly and Tom stuffs his mouth full of everything left on the plate and appears in the kitchen to recover his dessert - without his trousers.
He returns to the table, smiling. Plotting.
We wash up. I can hear the telltale beeping of disconnected implants.
Tom has strapped himself into his booster cushion. Naked.
'I've taken my clothes off!'
I give up and we guffaw the evening away.
Monday, April 14, 2008
Schools and all that
So... there was the Saga of the School Places which gripped Ruddington over the Easter period. The first we heard of it was via an email we received while in France and it darned near spoiled our holiday, let me tell you. We had applied for a place at the local infants school for next January as per instruction and the email informed us that the Local Authority had turned down our application.
I should mention that this is the only infants school in the village. It is the infants school to which the nursery Tom currently attends is attached. It is the infants school that has received funding to carry out improvements to the infants' classroom - in preparation for the arrival of a deaf boy with cochlear implants (yes, that would be Tom). It is the Local Authority that employs Tom's Teacher of the Deaf and had her train the infants school staff in all matters cochlear implant ahead of... well guess...
One has to admire the foresight, planning and communication at work there.
We came home to find a village in uproar. Okay, not quite; Tom was one of 17 children turned down, including Joe-the-boy-next-door, the daughter of 'that couple from ante-natal' and the daughter of the greengrocer. The school was full - its 60 places (class sizes are restricted to 30 by law for the first couple of years of school) taken up by children living closer than us. We tapped in to the 'word on the street' and the ruthless cut-and-thrust of school places was made plain to us. Stories of grandparents' and shop addresses being used on applications surfaced. Ruthless tactics for appeals hearings were shared and honed. Things were starting to look ugly.
Just as the torches were being lit and the posse rounded up however, our righteous indignation was punctured by the news that the school had found room (an extra classroom that it had misplaced or something) and there would be no need for the banners and marches.
So that's all fine then... but one might imagine the number of times phrases such as 'What is WITH these people?' passed our lips. It makes you think that this county just isn't THERE for us at the moment...
On a lighter note
Apropos nothing, Tom suddenly remembered our visit to Sundown last spring. In particular, he remembered a ride on a particularly tame river ride with a few strategically placed water jets.
'Yes! It wet daddy's teeny-tiny hair!' accompanied by thumb and forefinger held very close together.
Over the coming years I suspect that my son will say much less kind things about my rapidly disappearing hair than this.
A Grand Day Out
And bringing you right up to date, today Tom took part in a study being carried out by Rosie Lovett and Professor Quentin Summerfield at the University of York. Given this link, I'm guessing the project is sponsored by Deafness Research UK. The study is one of a number trying to fill the gap in terms of published research regarding the benefits of bilateral implantation.
Rosie's study involved Tom playing numerous listening games in the University's 'ring of sound', testing his ability to detect the direction from which a sound is coming and hearing in noise.
We'll get his official 'results' in the next few weeks but it certainly looked to us like he was performing pretty well.
We'd prepared Tom for his trip to see Rosie and the Professor, telling him about the exciting games they had lined up. He was a little overwhelmed when we got there, turning mute and hiding behind the furniture, and more than a little impressed with 'the Mufessor'.
As he eased himself into the day, Tom's cheekiness returned although he stuck resolutely to this title for Prof. Summerfield even after being invited to call him Quentin. On the first of many trips to the toilet during the day, he declared proudly 'this is where the Mufessor wees!'
Thursday, March 27, 2008
Cutting his hair aged him about 2 years in 10 swift-clipping minutes. Where did our baby go?
Wednesday, March 26, 2008
A day or so before we came home, we were wandering around a suitably picturesque Provencal village when Tom and Nik happened upon a cat who wasn't put off by his shrieking excitement and deigned to allow an approach. After a short bout of stroking, the cat nonchalantly departed but not before being declared a 'friend-a-ly cat'. By any measure it was a brief encounter. It provided a suitable opportunity for a little light language development and lessons about caution around animals but Tom was soon onto other exciting projects (including taking photographs - his choice of subject is quite eclectic - 'this dirt!', 'this road!', 'this car!!!') and the stroking fun was seemingly forgotten.
It hadn't gone far. The subject of the friend-a-ly cat was returned to in the car journey back to where we were staying. Yes, he was a very nice cat I agreed. I, too, liked him a lot. Then Tom's finely tuned sense of propriety and decorum kicked in.
We should invite the cat over for dinner.
Surely that would be a long walk, I argued. He doesn't know where we're staying.
This argument was roundly dismissed - his mummy and daddy could bring him in their car. Yes, he would like that a lot. We shall have the friend-a-ly cat for dinner.
I opted to play along. In retrospect this may have been my critical error but it was all in the name of fun language development and, well, we parents don't always know how it will pan out.
So when should we have called a halt? Before we laid a plate of rice at the table for the cat (Tom misheard me suggest 'mice' - or he just couldn't sanction such a ridiculous meal suggestion)? When I tried to use one of his soft toys as a 'pretend' friend-a-ly cat?
We had to start tea without the cat, oddly enough, although his tardiness did not go unnoticed. At some point I said to Tom 'we're only pretending aren't we?'. The tears welled up immediately and I could see Nik and her dad stifling those half-laughs/half-pouts of sympathy as Tom persisted with an increasingly tearful 'he is coming!'
'But sweetheart, cats can't talk... he can't tell his mummy and daddy where we live...'
'He can!' (thank you Pixar and Dreamworks for your witty and realistic personification)...
I tried in a similar, logical vein for a few minutes more. Tom bravely resisted reality. Then Nik came in.
'Ah, the cat has just phoned. He's sorry, but he really can't come. His mummy and daddy won't let him'.
And the crying stopped. Tom turned to me -
'He phoned me on his liccul phone', miming the cat reaching for a mobile on his belt.
The conversations with cats continue -
Tuesday, March 18, 2008
Looks like we got ahead of ourselves there...
NICE have just published their second appraisal consultation document in which they back-track on this recommendation, explicitly dropping pre-lingually deafened children from the list of those deemed suitable for bilaterals and stating:
And we were hoping, and campaigning, for a widening of the criteria to include post-lingually deafened children, who would equally benefit from improved hearing in the classroom, and adults. This is the UK's opportunity to catch up with the US and many other countries, display a little bit of common sense and act. What has caused this U-turn?
Bilateral cochlear implantation is not recommended for children and adults
(...) except in the context of research designed to generate
robust evidence about the benefits to functional hearing and health-related
quality of life of simultaneous or sequential bilateral compared with unilateral
cochlear implantation in those with severe to profound deafness who do not
receive adequate benefit from acoustic hearing aids.
If you are in any way involved, or interested, please consider responding to NICE through their website. They need telling.
Friday, March 14, 2008
Well you'll be pleased to know that it all ended well. Tom got over his illness, life returned to some semblance of normality and we all caught flights to snowy Switzerland and a week's skiing.
This return to normality was not as straightforward as one might have hoped. It took us via a GP who wasn't taking any chances, a referral to A&E where we encountered an equally risk-averse SHO (and supervising Registrar) and an overnight stay for Tom and Nik in the all-too-familiar Queen's Medical Centre. That is one of the assorted legacies of a medical history that features a life-threatening illness and febrile convulsions.
One is not dismissed as an over-anxious parent. One is not dispatched with a slightly patronising suggestion to administer Calpol and leave it a day or two. Indeed, everyone is at great pains to reassure you that you've done the right thing and they would do the exact same.
As it was, it was just a temperature - Tom was bouncing around on his hospital bed the next morning in a manner that suggested he was well on the road to recovery. There had been no need to get that anxious. There had been no real need to instigate a chain of events that led to expensive rescheduling of flights and an uncomfortable, stressful sleepless night for Nik - one that, coincidentally, featured the UK's largest earthquake for many years.
An alarming, terror-inducing portent of something much worse... that passed very quickly and
is all but forgotten now.
The same goes for the earthquake.
So what will happen next time Tom gets a temperature? Will we cope a little better? I don't know. If anyone has any strategies we'd love to hear them.
One thing that reassures me is looking at pictures like this, taken a week after this little drama.
Monday, February 25, 2008
Tuesday, January 29, 2008
I made contact with Charles Arthur soon after Tom came out of hospital - his son had a cochlear implant around the same time as Tom and it is great to read about the progress he's making. Charles' wife Jojo Moyes has written a piece for The Daily Mail supplement that is well worth reading - 'How Lockie broke through a wall of silence'. I hope you don't find the paragraph that follows the piece too alarming - I'm not sure about the relevance of the 'downstairs security check'.
On a slightly more self indulgent note, I've been contributing to getting a website off the ground that may be of interest to cochlear implant watchers. Hatched last summer as an attempt to get a few things out in the public domain about bilateral implants in time for the outcome of the NICE evaluation, 2 ears 2 hear has been launched. Written in conjunction with another parent of an implanted child, the website has a number of intentions: to support parents in their efforts to get what is best for their children from their PCTs, raising the profile of the issues surrounding bilateral cochlear implantation and to put some pressure on decision makers in the run up to the final publication of the NICE recommendations.
NICE kind of beat us to it with the publication of their draft recommendations last month but there is still a few months to go before the final report. As I've written before, if these recommendations had been in place when Tom was deafened, he would have qualified under two out of the three published criteria. We believe these recommendations don't go far enough. With them as they stand there is tacit acknowledgment that two implants are better than one but the additional cost of the second operation appears to tip the cost-effectiveness balance along with the gradual decline in likely effectiveness that is associated with failing to stimulate the auditory nerve.
Two weeks in and nursery school is still pretty appealing. We have had our first taste of on outcome of parenting a school age child - we only know as much as Tom is prepared to tell us... and that is highly variable. And often seems to deviate from reality.
A recent visit from the physiotherapist confirmed what we were suspecting - Tom is making excellent progress. He is far more stable and physically adept in terms of his gross motor movements (hark at the scientific terms) and becoming gradually more confident with a range of activities. The question I always ask is 'how far can he go?' and, like most of the questions we ask to professionals, it is met with a much qualified, carefully phrased 'don't know'.
What can be said though, and this saddens me however frequently it needs mentioning, is that Tom would be making far less progress if we had taken the NHS approach and accepted well enough.
Tuesday, January 22, 2008
The Old Bamboo from Jason B on Vimeo.
Friday, January 11, 2008
The first video is a 'little chat' I had with Tom the evening after his first session at nursery. I am competing for his attention with a pack of Snack-a-Jacks ('a sane snack in a mad world!' - no, really) and probably come off second best.
There's this whole discussion that comes up about having his photo taken at school. I think Tom has ignored the question and is making a slightly off the wall suggestion. It turns out he did have his picture taken at school...
Interview about nursery school from Jason B on Vimeo.
The second, and far more interesting, video is where Tom has taken control of the camera. I love his questions to me (is that how I sound? - the teacher from Peanuts sounds positively eloquent in comparison), his focus on his 'car' and his giggles. They get ya every time...
The birth of an auteur from Jason B on Vimeo.
Thursday, January 03, 2008
- We were at Granny's house
- Annabel had a metre-tall internally lit model Santa in her garden. We went to see it on Christmas Eve and I 'did' Santa's voice while Tom checked that he'd got his order right. I wasn't out of sight of and did nothing to hide my mouth... Tom seemed pretty convinced.
- Tom got lots of other things as well as the garage and the mini however he'd had to stop unwrapping pretty early in proceedings. He announced he had a tummy ache and went for a quiet story on his uncle's lap. It may have been the excitement. Then again, it might have been the heady cocktail of chocolate and sweets for breakfast.
Tom explains Xmas from Jason B on Vimeo.