Tom has abruptly entered a period of determined self-sufficiency - but on his terms.
For example - all stages of the toast-making process are preceded and punctuated by a forceful 'Tom-tom do it!' or 'You do it!' (he means 'I' - he has a very individualistic understanding of personal pronouns and uses them liberally and in defiance of common conventions) but when it comes to actually sitting and eating the stuff, the only way its going to be finished before Christmas is if its offered up to his busily chattering mouth.
Getting dressed is another area where Tom is making a bid for autonomy. Its very cute watching him get in a tangle of vest, pyjamas and processor harness - unless its one of those rare occasions when work-at-home dad has to catch a train to the big smoke. He knows... of course he knows.
So yesterday morning, during the daily dress-a-thon, Tom achieved a first which the baby book seems to have missed out of its list of dates to be celebrated - he reattached his magnetic headpiece.
'Tom-tom put your ear on!'
It makes sense to us.
Friday, March 16, 2007
Thursday, March 08, 2007
Seminar Postscript
I wasn't the only parent speaking at the Ear Foundation on Tuesday and, on re-reading my last entry, I feel its important to give them a mention as they, like us, never gave up even when those who support bilateral implantation were saying it was too late.
Tricia Kemp, southern coordinator of CICS spoke passionately and incredibly eloquently about her son who, born deaf, didn't receive his second implant until he was 18 and is benefitting. Aside from the bilateral dimension, Tricia's son's story is particularly thought-provoking. They sought an implant when they weren't offered in the UK and had to travel to Germany in 1991 amid incredibly negative reactions from professionals. We have made some progress in this field then...
Another Mum, Annie Wilson, had brought along a video of her 11 year old explaining for himself how his second implant, carried out only a year or two ago, is helping him. It was very touching and unfortunate that the conference as a whole didn't get to see it. Maybe she'll post it on Vimeo (the thinking person's smut-free alternative to Youtube)?
Tom's story is short and relatively painless compared to some. We never use the word 'lucky' to describe our situation - but on the big scale of unfortunate-stuff-that-happens-too-often, maybe we did OK.
Tricia Kemp, southern coordinator of CICS spoke passionately and incredibly eloquently about her son who, born deaf, didn't receive his second implant until he was 18 and is benefitting. Aside from the bilateral dimension, Tricia's son's story is particularly thought-provoking. They sought an implant when they weren't offered in the UK and had to travel to Germany in 1991 amid incredibly negative reactions from professionals. We have made some progress in this field then...
Another Mum, Annie Wilson, had brought along a video of her 11 year old explaining for himself how his second implant, carried out only a year or two ago, is helping him. It was very touching and unfortunate that the conference as a whole didn't get to see it. Maybe she'll post it on Vimeo (the thinking person's smut-free alternative to Youtube)?
Tom's story is short and relatively painless compared to some. We never use the word 'lucky' to describe our situation - but on the big scale of unfortunate-stuff-that-happens-too-often, maybe we did OK.
Wednesday, March 07, 2007
Notes from a Seminar
The Ear Foundation held a major seminar on Tuesday (6th March) - 'Bilateral Implantation: Two implants - always better than one?'. The agenda was littered with speakers who are big names in the field of cochlear implantation and audiological research, not just in the UK but across Europe and America. Somewhere down near the bottom of that list, representing a parent's take on all things bilateral, was me. Seeing as we live a stone's throw from the Ear Foundation and Tom is one of the few bilaterally implanted kids in the country (apparently there were around 50 this time last year so it's safe to say there's still well under 100) such opportunities are bound to crop up.
It was a fascinating day; if you ever get the chance, and have an interest in the scientific dimensions of cochlear implantation, then listen out for Rich Tyler (here's a recent lecture), Gerry O'Donoghue (another lecture) and Paul Govaerts to name but a few.
I didn't, however, spend the whole day with my jaw hanging at the sheer cleverness of this cochlear implant stuff. I've moved on from that; after all, Tom is living proof that it is a phenomenal technology that can change lives. We've been waiting for the literature to catch up. More important were several inter-related issues that surfaced during the course of the day... things that place our recent history into stark perspective.
Whichever way you look at it, there is now more than enough evidence of the published, quantifying scientific kind that bilateral cochlear implants work and add considerable benefit to those who aren't assisted by hearing aid. Some of it, admittedly, has emerged since the request for bilaterals for Tom was turned down back in June 2006 but, largely speaking the professionals have known for plenty long enough. There is also a mountain of anecdotal evidence that describes how binaural hearing (hearing in both ears whether it be a mixture of hearing aid and implant or just implants) enriches people's lives by placing them back into the world of sound in a way that unilateral hearing can't match and that is very difficult to quantify.
Essentially, you will struggle to find anyone working in the field who doesn't feel that bilateral implantation, particularly for young children with their years of language development ahead of them, would enhance the quality of recipient's lives in a deeply profound way. One of the key messages from the conference is that's a given and the earlier the better.
So, as there doesn't seem to be much dispute about the value of bilateral implantation, discussions touched on the thorny realities of public sector funding and the ongoing NICE appraisal. It was at these junctures that things got heated, and rightly so.
The position that has been taken by funding bodies in this country - using the lack of research evidence (of which there isn't really a lack) as a convenient scapegoat for not providing for bilateral implantation - is increasingly untenable. It has always been a disgraceful head-in-sand position anyway; it doesn't take a medical genius to see that cost is the only deciding factor. To pretend otherwise is deceitful and one of a number of ways of infuriating the average parent. Never was it suggested that Tom only wear one hearing aid during the period before implantation and, as Mark Lutman mentioned during yesterday's conference, there is little scientific evidence to back up the provision of two hearing aids as opposed to one. So why were we furnished with two? Because gut feeling tells everyone that aiding both sides is best of course.
The seminar reached its emotional peak when the vice-chair of the British Cochlear Implant Group (BCIG) fielded questions on her presentation; essentially a report of the findings of last year's survey of bilateral provision across this country's 22 cochlear implant programmes. What her results suggested was that there were huge discrepancies in not only bilateral provision across the country but also between implant programme's attitudes. There were few statistics presented; we mainly saw examples of the answers given by the respondents. While it isn't surprising that there are differences of opinion and approach across the country, what alarmed was the tone, particularly when it came to funding.
At Tom's appeal one of the panel asked me a question along the following lines - 'If you had two deaf children and two implants, as their parent how would you choose to share them out?'. This guilt-laying approach, possibly designed to appeal to my liberal social conscience, completely misses the point in terms of how the medical profession should be addressing this issue but is indicative of the way the Health Service works itself. The Implant Programmes are presented with the same choices by funders; for every bilateral someone else misses out on one. Keep asking and we'll take the funding away altogether.
The BCIG vice-chair concluded by outlining the recommendations they were proposing to make to NICE. Their policy statement proposed a list of who should get bilateral implants:
The contrast with practice in many other countries is stark. A surgeon from Sweden spoke about how bilateral implantation for profoundly deaf children is standard. It took a fight, by parents and the Implant Centres, but they were prepared to fight. With the group who represent the Implant Programmes only offering watered down recommendations, it would seem that we're not up for that sort of fight in the UK. Why?
Is it something to do with how we think about children in this country?
It was a fascinating day; if you ever get the chance, and have an interest in the scientific dimensions of cochlear implantation, then listen out for Rich Tyler (here's a recent lecture), Gerry O'Donoghue (another lecture) and Paul Govaerts to name but a few.
I didn't, however, spend the whole day with my jaw hanging at the sheer cleverness of this cochlear implant stuff. I've moved on from that; after all, Tom is living proof that it is a phenomenal technology that can change lives. We've been waiting for the literature to catch up. More important were several inter-related issues that surfaced during the course of the day... things that place our recent history into stark perspective.
Whichever way you look at it, there is now more than enough evidence of the published, quantifying scientific kind that bilateral cochlear implants work and add considerable benefit to those who aren't assisted by hearing aid. Some of it, admittedly, has emerged since the request for bilaterals for Tom was turned down back in June 2006 but, largely speaking the professionals have known for plenty long enough. There is also a mountain of anecdotal evidence that describes how binaural hearing (hearing in both ears whether it be a mixture of hearing aid and implant or just implants) enriches people's lives by placing them back into the world of sound in a way that unilateral hearing can't match and that is very difficult to quantify.
Essentially, you will struggle to find anyone working in the field who doesn't feel that bilateral implantation, particularly for young children with their years of language development ahead of them, would enhance the quality of recipient's lives in a deeply profound way. One of the key messages from the conference is that's a given and the earlier the better.
So, as there doesn't seem to be much dispute about the value of bilateral implantation, discussions touched on the thorny realities of public sector funding and the ongoing NICE appraisal. It was at these junctures that things got heated, and rightly so.
The position that has been taken by funding bodies in this country - using the lack of research evidence (of which there isn't really a lack) as a convenient scapegoat for not providing for bilateral implantation - is increasingly untenable. It has always been a disgraceful head-in-sand position anyway; it doesn't take a medical genius to see that cost is the only deciding factor. To pretend otherwise is deceitful and one of a number of ways of infuriating the average parent. Never was it suggested that Tom only wear one hearing aid during the period before implantation and, as Mark Lutman mentioned during yesterday's conference, there is little scientific evidence to back up the provision of two hearing aids as opposed to one. So why were we furnished with two? Because gut feeling tells everyone that aiding both sides is best of course.
The seminar reached its emotional peak when the vice-chair of the British Cochlear Implant Group (BCIG) fielded questions on her presentation; essentially a report of the findings of last year's survey of bilateral provision across this country's 22 cochlear implant programmes. What her results suggested was that there were huge discrepancies in not only bilateral provision across the country but also between implant programme's attitudes. There were few statistics presented; we mainly saw examples of the answers given by the respondents. While it isn't surprising that there are differences of opinion and approach across the country, what alarmed was the tone, particularly when it came to funding.
At Tom's appeal one of the panel asked me a question along the following lines - 'If you had two deaf children and two implants, as their parent how would you choose to share them out?'. This guilt-laying approach, possibly designed to appeal to my liberal social conscience, completely misses the point in terms of how the medical profession should be addressing this issue but is indicative of the way the Health Service works itself. The Implant Programmes are presented with the same choices by funders; for every bilateral someone else misses out on one. Keep asking and we'll take the funding away altogether.
The BCIG vice-chair concluded by outlining the recommendations they were proposing to make to NICE. Their policy statement proposed a list of who should get bilateral implants:
- patients following meningitis/ossification
- in case of additional sensory handicap
- where there is a loss in performance or device function in the first ear
- for participation in research studies.
The contrast with practice in many other countries is stark. A surgeon from Sweden spoke about how bilateral implantation for profoundly deaf children is standard. It took a fight, by parents and the Implant Centres, but they were prepared to fight. With the group who represent the Implant Programmes only offering watered down recommendations, it would seem that we're not up for that sort of fight in the UK. Why?
Is it something to do with how we think about children in this country?
Monday, February 26, 2007
Men and Motors
Tom and Nik found themselves in the magazine aisle of one of our local supermarkets over the weekend. He was offered a choice of comics as a treat for being just so darn cute. His Mum tried to steer him to this:
He was having none of it - and, frankly, I can see why. Justin and Sarah-Jane have always made me nervous while Stephanie... she's just a little too fast for my liking.
So after a little tooing and frowing he came home with this highly commendable pre-school reading:
It wasn't his first choice mind; he had his eyes set on something far more glossy from the high end of the automotive press range.
I'm thinking - forget saving for college fees; what our boy needs is a downpayment on a lockup under some disused railway arches and he'll be set for life. The motor trade for you son (pronounced 'saaaaan' in my best East End) - do your learning in the university of life.
He was having none of it - and, frankly, I can see why. Justin and Sarah-Jane have always made me nervous while Stephanie... she's just a little too fast for my liking.So after a little tooing and frowing he came home with this highly commendable pre-school reading:
It wasn't his first choice mind; he had his eyes set on something far more glossy from the high end of the automotive press range.I'm thinking - forget saving for college fees; what our boy needs is a downpayment on a lockup under some disused railway arches and he'll be set for life. The motor trade for you son (pronounced 'saaaaan' in my best East End) - do your learning in the university of life.
Thursday, February 22, 2007
Progress continues - we've got the scores to prove it!
So it's over seven months now since Tom's first implant was switched on and six months since his language was first assessed using the 'Preschool Language Scales-3' (the UK version - the link points to an explanation of the US original).
The idea is that a child's understanding and use of spoken language is evaluated and then compared to a scale derived from a large sample of children aged from birth to just under seven with typical hearing. The results produced give an 'age equivalent' score, comparing Tom to the sample group, for both Auditory Comprehension (does he understand what has been said to him) and Expressive Communication (the quality of the language he uses).
So... how's he doing? Well he's scoring right in the average range for children of his age with typical hearing (and you'll understand why I emphasise that a second time). His 'Age Equivalence Score' puts him at 2 years 7 months; he's actually 2 years 6 months - our boy's ahead! (all dependent on standard deviations and confidence limits of course - I did listen in Stats class).
Proud? You bet. I'm not going to tire of expressing just how marvellous these implants are and what they have done for Tom's life. Charles Arthur, tacking a similar course at more or less the same speed, would hasten to agree. In his latest entry he talks about baby3's remarkable progress with his Advanced Bionics implant after being born profoundly deaf. Interestingly, he's also ruminating on the pursuit of bilaterals - a pathway fraught with no small amount of tension but, ultimately, great rewards.
Its impossible to compare the progress of kids with implants against each other in any meaningful way; different start points, different aetiologies and so many different language experiences post-operatively. This is, of course, why it is tricky to quantify the benefits of bilateral implantation for any given individual - there are just too many factors having an impact on language development - and why any attempt to measure what added benefits Tom's second implant have had over the first is on shaky scientific ground. We're confident it has but the counter-argument goes, he was 'lucky' enough to have had hearing for 20 months before meningitis and was implanted very shortly afterwards. What portion of his success is due to these factors rather than the second implant?
There is no meaningful way of comparing the period with one implant with the bilateral state, not at the age he is. We just see the benefits every day - the way he picks up language almost incidentally, his ever-improving localisation - the 'normalisation' that has occurred. All the considered arguments that appear in scientific publications (and that I described during a bit of a week last July) are being borne out. But then, we had to pay to find that out.
Which is where the PCTs, with their ever-present cash shortages and demands to save money, come in. I wonder which way yours will jump should you ask them, Charles?
The idea is that a child's understanding and use of spoken language is evaluated and then compared to a scale derived from a large sample of children aged from birth to just under seven with typical hearing. The results produced give an 'age equivalent' score, comparing Tom to the sample group, for both Auditory Comprehension (does he understand what has been said to him) and Expressive Communication (the quality of the language he uses).
So... how's he doing? Well he's scoring right in the average range for children of his age with typical hearing (and you'll understand why I emphasise that a second time). His 'Age Equivalence Score' puts him at 2 years 7 months; he's actually 2 years 6 months - our boy's ahead! (all dependent on standard deviations and confidence limits of course - I did listen in Stats class).
Proud? You bet. I'm not going to tire of expressing just how marvellous these implants are and what they have done for Tom's life. Charles Arthur, tacking a similar course at more or less the same speed, would hasten to agree. In his latest entry he talks about baby3's remarkable progress with his Advanced Bionics implant after being born profoundly deaf. Interestingly, he's also ruminating on the pursuit of bilaterals - a pathway fraught with no small amount of tension but, ultimately, great rewards.
Its impossible to compare the progress of kids with implants against each other in any meaningful way; different start points, different aetiologies and so many different language experiences post-operatively. This is, of course, why it is tricky to quantify the benefits of bilateral implantation for any given individual - there are just too many factors having an impact on language development - and why any attempt to measure what added benefits Tom's second implant have had over the first is on shaky scientific ground. We're confident it has but the counter-argument goes, he was 'lucky' enough to have had hearing for 20 months before meningitis and was implanted very shortly afterwards. What portion of his success is due to these factors rather than the second implant?
There is no meaningful way of comparing the period with one implant with the bilateral state, not at the age he is. We just see the benefits every day - the way he picks up language almost incidentally, his ever-improving localisation - the 'normalisation' that has occurred. All the considered arguments that appear in scientific publications (and that I described during a bit of a week last July) are being borne out. But then, we had to pay to find that out.
Which is where the PCTs, with their ever-present cash shortages and demands to save money, come in. I wonder which way yours will jump should you ask them, Charles?
Tuesday, February 20, 2007
'Tomness'
With grandparents living near and far (and when I say far, I mean 'other country' far), the pressure to film Tom (and travel to and fro) is fairly high. We forget quite lot (the filming I mean, not the travelling - we're good at remembering to do that) and Tom isn't really one for cooperating. The moment the camera comes on he usually does one of three things:
- clams up
- grabs the camera or
- demands to see himself on playback.
One has to wait until he's absorbed completely in something else, like admiring his new bed for the first time for example, to capture his essential 'Tomness' - that or film him secretly as they do at AV UK.
Anyways, although this clip doesn't feature a great deal of Tom talking (you'll have to take it from me that he had been shouting incessantly about 'airplanes', tractors, mountains and heaven knows what since arriving at the airport) it does capture something of his character and demonstrates, for any movie directors out there looking for a cute kid with cochlear implants to star in your next blockbuster, that he can take direction.
It also involves me experimenting with a bit of background music, stupid titles and credits. For grandparents and other relatives I am hoping this will be seen as 'cute' rather than overly schmaltzy. Anyone else who happens on this, forgive me.
And, on reflection, he's over three feet high. Damn.
Two Feet High and Smiling on Vimeo
Saturday, February 17, 2007
Tom's new bed
We took delivery of Tom's new bed last weekend. It lay in pieces on the landing all week - plenty long enough for Tom to identify that it bore more than a passing resemblance to a racing car and that it needed making and soon.
The morning and evening discussions this week have all featured Tom's express wish that 'Daddy make the racing car soon'. By Thursday Tom had added the impatient exhortation 'Come on daddy!'
I screwed it all together on Friday and the duvet cover that arrived midweek provided the finishing touch. The video below shows Tom's reaction to the discovery of the bed.
Tom's New Bed on Vimeo
We didn't hear from him at all this morning - about 9am we decided that we ought to see if he had any intention of getting up. To say he was happy to go to bed this evening is taking understatements about as far as they dare go.
A successful transition to a bed? I think so.
The morning and evening discussions this week have all featured Tom's express wish that 'Daddy make the racing car soon'. By Thursday Tom had added the impatient exhortation 'Come on daddy!'
I screwed it all together on Friday and the duvet cover that arrived midweek provided the finishing touch. The video below shows Tom's reaction to the discovery of the bed.
Tom's New Bed on Vimeo
We didn't hear from him at all this morning - about 9am we decided that we ought to see if he had any intention of getting up. To say he was happy to go to bed this evening is taking understatements about as far as they dare go.
A successful transition to a bed? I think so.
Thursday, February 15, 2007
Garry Tractor
Yesterday evening I stood Tom on the front windowsill to watch Mummy drive away.
'Mummy won't be long. She's going to see the chiropractor' I said, by way of explanation.
Pause. Thoughtful gaze out of the window.
'There's a bus!!' Tom shrieked excitedly.
More thoughtful pausing.
'Mummy gone to see Garry Tractor. In the field!'
The obsession with all things vehicular runs deep. I love the fact that he doesn't question why Mummy would be going to a field at 6pm to see a tractor. That's what he would do if we'd only let him out of the darned house!
'Mummy won't be long. She's going to see the chiropractor' I said, by way of explanation.
Pause. Thoughtful gaze out of the window.
'There's a bus!!' Tom shrieked excitedly.
More thoughtful pausing.
'Mummy gone to see Garry Tractor. In the field!'
The obsession with all things vehicular runs deep. I love the fact that he doesn't question why Mummy would be going to a field at 6pm to see a tractor. That's what he would do if we'd only let him out of the darned house!
Wednesday, February 14, 2007
Otoscopes and Electrodes
Another day, another appointment - this time with the Eminent Surgeon who implanted both of Tom's CIs. It was a routine follow up, well as routine as such things are when we're talking about sophisticated electronics embedded into children's skulls. Any examination amounted to little more than a peer into the ear canal using his otoscope.
Tom decided that, for reasons best kept to himself, he would deign to allow the surgeon to stick this rather odd object in his ear. Whether this is a sign of his burgeoning maturity (he is, after all, two and a half now) or simply resignation to the inevitable I don't know. What does appear to help though is one of the most useful tips we've received. It is also one of the most blindingly obvious, forehead-slapping-while-exclaiming-'Of-course!' pieces of advice that has come our way too. It is that straightforward that I feel very dumb admitting that I actually needed it spelling out for me but, hey, I have a number of excuses lined up.
To make our life much, much easier we take time to tell Tom 'the plan'. No point in hiding the stuff he's going to dislike and springing it on him at the last minute (we tried that - Tom thinks that sucks), we share the bad news and also tell him the good bit that comes after. So, in this case, we told Tom that we were going to see Mr Gibbin who was going to look in his ears. He then repeated this back to us for the next 30 minutes at 10 second intervals, occasionally pondering whether this would involve going in daddy's noisy car and why we were seeing Mr Gibbin at Tracey's house ('Tracey's house' being the Implant Centre where Tracey, one of our audiologists, works).
In the grand scheme of nasty treatments that Tom's been through, having an otoscope delicately placed in his ear canal is small beer. He still made the Eminent Surgeon, a man not lacking in gravitas, examine the ears of Lightning McQueen, Sally and Ramone before his own. Now that was funny.
What wasn't so humorous was the confirmation that one of the electrodes in Tom's left implant needed to be switched off. The audiologists identified atypical impedence readings which have finally been diagnosed as a short circuit. Demonstrating his uncanny knack of being at the wrong end of long odds, Tom is only the third person out of 2000 implanted to have this happen with the Advanced Bionics device.
The upshot? Well, there's been no dropping off in the pace of Tom's language development and he still chooses to ignore us when he feels it appropriate. The redundancy built in to the device is designed to cope with such occurrences and, with improvements such as the Harmony System now released, there isn't much cause for alarm. As long as this isn't the start of something.
The appointment's most memorable moment, however, was so enormously positive that it left the electrode news deep in the shade. While watching Tom bounce around and talk incessantly to Nik and I we overheard the Eminent Surgeon say, in an aside to his registrar, 'You just can't tell he's deaf!'.
That is what he, and this technology, have done for our son.
Tom decided that, for reasons best kept to himself, he would deign to allow the surgeon to stick this rather odd object in his ear. Whether this is a sign of his burgeoning maturity (he is, after all, two and a half now) or simply resignation to the inevitable I don't know. What does appear to help though is one of the most useful tips we've received. It is also one of the most blindingly obvious, forehead-slapping-while-exclaiming-'Of-course!' pieces of advice that has come our way too. It is that straightforward that I feel very dumb admitting that I actually needed it spelling out for me but, hey, I have a number of excuses lined up.
To make our life much, much easier we take time to tell Tom 'the plan'. No point in hiding the stuff he's going to dislike and springing it on him at the last minute (we tried that - Tom thinks that sucks), we share the bad news and also tell him the good bit that comes after. So, in this case, we told Tom that we were going to see Mr Gibbin who was going to look in his ears. He then repeated this back to us for the next 30 minutes at 10 second intervals, occasionally pondering whether this would involve going in daddy's noisy car and why we were seeing Mr Gibbin at Tracey's house ('Tracey's house' being the Implant Centre where Tracey, one of our audiologists, works).
In the grand scheme of nasty treatments that Tom's been through, having an otoscope delicately placed in his ear canal is small beer. He still made the Eminent Surgeon, a man not lacking in gravitas, examine the ears of Lightning McQueen, Sally and Ramone before his own. Now that was funny.
What wasn't so humorous was the confirmation that one of the electrodes in Tom's left implant needed to be switched off. The audiologists identified atypical impedence readings which have finally been diagnosed as a short circuit. Demonstrating his uncanny knack of being at the wrong end of long odds, Tom is only the third person out of 2000 implanted to have this happen with the Advanced Bionics device.
The upshot? Well, there's been no dropping off in the pace of Tom's language development and he still chooses to ignore us when he feels it appropriate. The redundancy built in to the device is designed to cope with such occurrences and, with improvements such as the Harmony System now released, there isn't much cause for alarm. As long as this isn't the start of something.
The appointment's most memorable moment, however, was so enormously positive that it left the electrode news deep in the shade. While watching Tom bounce around and talk incessantly to Nik and I we overheard the Eminent Surgeon say, in an aside to his registrar, 'You just can't tell he's deaf!'.
That is what he, and this technology, have done for our son.
Thursday, February 08, 2007
Visiting the bank
So we were in the bank. We'd brought along a portable DVD player to distract Tom and he'd settled down on the floor to watch 'Cars' for the 52nd time, occasionally kicking the bank advisor's shins absent-mindledly when things got exciting.
As is fairly typical, particularly when you're fairly confident about what happens next on screen, Tom's mind seemed to wander. On those rare occasions when he watches TV (!!!) he is wont to make thoughtful requests as random desires come over him. Musings in the past have led to 'Chocolate' or 'Cake'. In the bank however, his mind went elsewhere. He stood up, raised his chin slightly in my direction and asked 'Daddy get bogey'.
Something of an icebreaker don't you think? Clearly it would have had more effect (and made a better story) if he'd asked the bank advisor guy to remove said bogey.
What I should have said rather than the slightly middle class 'shh.. not just now'? 'Ask mummy, she's got much longer nails'.
As is fairly typical, particularly when you're fairly confident about what happens next on screen, Tom's mind seemed to wander. On those rare occasions when he watches TV (!!!) he is wont to make thoughtful requests as random desires come over him. Musings in the past have led to 'Chocolate' or 'Cake'. In the bank however, his mind went elsewhere. He stood up, raised his chin slightly in my direction and asked 'Daddy get bogey'.
Something of an icebreaker don't you think? Clearly it would have had more effect (and made a better story) if he'd asked the bank advisor guy to remove said bogey.
What I should have said rather than the slightly middle class 'shh.. not just now'? 'Ask mummy, she's got much longer nails'.
Back to the old routine
For a glorious three week stretch through the middle of January Tom has been professional-free. Following a tuning session with the audiologists on the 4th, there were no early morning motorway excursions down to Bicester therapy sessions; no psychological torment in the QMC’s bizarrely obstructive multi-storey car park and no house callers armed with ring binders and bags stuffed with aurally challenging toys. Strange times: no ‘interventions’, no assessments – just us.
This hiatus came to an end with a visit to the nursery/infants that Tom will start attending in September – an occasion that succeeded in being both curiously reassuring and intrusive simultaneously. We draw strength from the affirmations of Tom’s progress that generally accompany the appointments; concerns accumulate like weeds in the kitchen garden and, while we’re both becoming more accomplished with the hoe, they keep coming back and expert advice is required.
So we met up with the marvellous Tanya, Tom’s Teacher of the Deaf, for an appointment with the school’s new Head teacher to discuss the preparations required for Tom’s arrival. The impact our son is about to have on this school is multi-faceted and will include training for staff on the more practical aspects of dealing with our wired-up bionic boy, the potential adaptations to the fabric of the building that should make it easier for Tom to hear and possible support provision.
The school, thanks to Tanya’s forward thinking and organisation, is ahead of the game and I came away reassured that things will be OK. Now, a few days on and with wearying predictability, there has been a stirring up of emotions. Between Nik and me, it’s safe to say, there are a surfeit of emotions and their stirring up is a fairly frequent occurrence. Some of them are predictable anxieties tied up with transitions and the thought of our baby going off to school; the sort of every day anxiety we like to wallow in, celebrate and adorn with associated worries such as ‘must get the little blighter potty trained’, ‘he will NEVER sit still’ and ‘he’s too little!’.
Others, though, are a little more specific and, for me at least, hark back to unspoken expectations about my son and his glorious progress; a triumphant, joyful, painless romp through childhood featuring a modestly worn yet undeniably keen intellect, prodigious sporting talent and an ever-present smile.
This vision did not include support teachers, nor did it include a strikingly obvious difference that marked him out from day one. The tale I had woven for Tom is typical parental aspiration - the emphasis was on triumph and there was a noted absence of adversity.
We have met and continue to work with some talented, caring people because of what has happened to Tom. They have an enormously difficult task to do because, of course, we would rather have never met them. If we’d gone through life with only a vague understanding about the devastation that meningitis can cause and the impact of deafness on a child’s life then, let’s face it, we wouldn’t have worried too much.
The way it is though, Tom’s implants are working – his understanding and his spoken language is flourishing thanks to these audiologists, therapists and teachers. As Jacqueline Stokes tells us every time we see her, he is a clever boy and is going to flourish. The bigger challenges, I think, are social and, rereading this, making sure his dad doesn’t fuck him up in an appropriately Larkinesque way. The last thing he needs is the baggage of my expectations.
This hiatus came to an end with a visit to the nursery/infants that Tom will start attending in September – an occasion that succeeded in being both curiously reassuring and intrusive simultaneously. We draw strength from the affirmations of Tom’s progress that generally accompany the appointments; concerns accumulate like weeds in the kitchen garden and, while we’re both becoming more accomplished with the hoe, they keep coming back and expert advice is required.
So we met up with the marvellous Tanya, Tom’s Teacher of the Deaf, for an appointment with the school’s new Head teacher to discuss the preparations required for Tom’s arrival. The impact our son is about to have on this school is multi-faceted and will include training for staff on the more practical aspects of dealing with our wired-up bionic boy, the potential adaptations to the fabric of the building that should make it easier for Tom to hear and possible support provision.
The school, thanks to Tanya’s forward thinking and organisation, is ahead of the game and I came away reassured that things will be OK. Now, a few days on and with wearying predictability, there has been a stirring up of emotions. Between Nik and me, it’s safe to say, there are a surfeit of emotions and their stirring up is a fairly frequent occurrence. Some of them are predictable anxieties tied up with transitions and the thought of our baby going off to school; the sort of every day anxiety we like to wallow in, celebrate and adorn with associated worries such as ‘must get the little blighter potty trained’, ‘he will NEVER sit still’ and ‘he’s too little!’.
Others, though, are a little more specific and, for me at least, hark back to unspoken expectations about my son and his glorious progress; a triumphant, joyful, painless romp through childhood featuring a modestly worn yet undeniably keen intellect, prodigious sporting talent and an ever-present smile.
This vision did not include support teachers, nor did it include a strikingly obvious difference that marked him out from day one. The tale I had woven for Tom is typical parental aspiration - the emphasis was on triumph and there was a noted absence of adversity.
We have met and continue to work with some talented, caring people because of what has happened to Tom. They have an enormously difficult task to do because, of course, we would rather have never met them. If we’d gone through life with only a vague understanding about the devastation that meningitis can cause and the impact of deafness on a child’s life then, let’s face it, we wouldn’t have worried too much.
The way it is though, Tom’s implants are working – his understanding and his spoken language is flourishing thanks to these audiologists, therapists and teachers. As Jacqueline Stokes tells us every time we see her, he is a clever boy and is going to flourish. The bigger challenges, I think, are social and, rereading this, making sure his dad doesn’t fuck him up in an appropriately Larkinesque way. The last thing he needs is the baggage of my expectations.
Sunday, February 04, 2007
The Dreaded QALY
I mentioned some time back that Professor Quentin Summerfield would be giving a twilight lecture on the subject of bilateral implants in the context of the British National Health Service. It took place on the 25th January - there is a rather crumbly recording of it on the Ear Foundation's Recent Twilight Lectures page.
It is a balanced, highly rational and necessarily impersonal description of the factors that influence who should get a cochlear implant (or two) and how the decisions are arrived at. Prof. Summerfield gets quite mathematical as you might imagine and it might take you a couple of run-throughs or frequent use of the pause button but he is heavily involved in this stuff - you can safely assume that he knows what he's talking about.
Much of the discussion centres around the QALY - the Quality Adjusted Life Year - which is an attempt to measure the impact of medical interventions on both the quantity and quality of life resulting from said intervention. By throwing into the equation the cost of the interventions, the 'Powers That Decide Such Things' can make informed choices about which procedures to fund and to whom, based on their cost-effectiveness, i.e. it is the cost per QALY that is used to prioritise across treatments with a threshold of €50,000/QALY as the upper limit for consideration. The more QALYs you can create on your budget, the better.
Single cochlear implants to both children and adults, you'll be glad to hear, fall safely within the threshold for cost-effectiveness but bilaterals for adults most definitely do not. The cost-effectiveness of bilaterals for children, you'll notice if you get that far in the lecture, is unknown. Beyond positing that its likely to be higher for children than adults because of the expected impact on educational costs and relative lifespan, Summerfield cannot say although he does go on to describe the research that is about to start in the UK that will inform the calculation.
Why am I revisiting this and what does it mean for Tom? Well, I can't get this QALY thing out of my head and it has reawakened the medical researcher in me that has lain dormant for a few months. Exploring, for example, how a measure is put on life quality (there are numerous ways apparently, including the EQ-5D) is one new preoccupation. For the most part though, I just think about what impact the research and ongoing NICE project will have on us and Tom's future.
Something else that's unclear, unresolved and needs waiting for... ain't that just the hardest part?
It is a balanced, highly rational and necessarily impersonal description of the factors that influence who should get a cochlear implant (or two) and how the decisions are arrived at. Prof. Summerfield gets quite mathematical as you might imagine and it might take you a couple of run-throughs or frequent use of the pause button but he is heavily involved in this stuff - you can safely assume that he knows what he's talking about.
Much of the discussion centres around the QALY - the Quality Adjusted Life Year - which is an attempt to measure the impact of medical interventions on both the quantity and quality of life resulting from said intervention. By throwing into the equation the cost of the interventions, the 'Powers That Decide Such Things' can make informed choices about which procedures to fund and to whom, based on their cost-effectiveness, i.e. it is the cost per QALY that is used to prioritise across treatments with a threshold of €50,000/QALY as the upper limit for consideration. The more QALYs you can create on your budget, the better.
Single cochlear implants to both children and adults, you'll be glad to hear, fall safely within the threshold for cost-effectiveness but bilaterals for adults most definitely do not. The cost-effectiveness of bilaterals for children, you'll notice if you get that far in the lecture, is unknown. Beyond positing that its likely to be higher for children than adults because of the expected impact on educational costs and relative lifespan, Summerfield cannot say although he does go on to describe the research that is about to start in the UK that will inform the calculation.
Why am I revisiting this and what does it mean for Tom? Well, I can't get this QALY thing out of my head and it has reawakened the medical researcher in me that has lain dormant for a few months. Exploring, for example, how a measure is put on life quality (there are numerous ways apparently, including the EQ-5D) is one new preoccupation. For the most part though, I just think about what impact the research and ongoing NICE project will have on us and Tom's future.
Something else that's unclear, unresolved and needs waiting for... ain't that just the hardest part?
Wednesday, January 31, 2007
Snowtime
We just got back from the Alps and, as you can see, Tom fills out a snowsuit quite nicely, the belt gives him a most peculiar hourglass shape, accenuating his nappy-clad butt quite spectacularly.Surrounded by indulgent family, the boy had a marvellous time. Too marvellous a time on occasions which led to a couple of spectacular tantrums, the most dramatic of which led to this:
An hour or so of screaming after a trip in a telecabine ('flying train' in Tom parlance) and a spot of light sledging takes it out of a boy. Thank goodness for underfloor heating.
Friday, January 12, 2007
Everyday thoughts
Last night Tom threw an almighty tantrum. It’s hardly surprising, he is two after all, but they are fairly rare and, in our sensitised parental state, we tend to pick over the aetiology of the tantrum, catalogue its cause and symptoms and then do our damnedest to avoid it happening again.
Because tantrums suck.
So we move on to bath time and everything starts to unravel; the tantrum kicks in, the snot starts to flow and… we have our most stark daily reminder of Tom’s deafness. What is a straightforward refusal to remove an item of clothing becomes infinitely more difficult to deal with, for me at least, when the item in question is his implant processor harness and the accompanying coils that enable him to hear. Refusal to remove a shirt is just a two year old who has lost his ability to understand; refusal to remove his hearing is something far more profound, whether it’s a mere extension of the stubbornness or not.
Last night this was compounded by Nik’s discovery that Tom’s right implant wasn’t working and, presumably, hadn’t been for some portion of the day. We know he can hear with his left implant, it was tested only last week, but listening with only one ear is incredibly tiring. The extra concentration required is enormous and must have contributed significantly to Tom’s fatigue and mood.
The battery in the right processor was flat – a development we hadn’t yet encountered. I instantly knew why; I had left the processor on the test setting overnight and, although I’d noticed in the morning, I had been in a rush to get Tom dressed and out of the house and had treated it with a laissez faire, ‘it’ll all be OK’ attitude that I would to dressing Tom in yesterday’s vest or forgetting his gloves.
I thought that attitude had gone when Tom had contracted meningitis… and certainly would never be applied to anything related to his hearing. Yesterday evening when all the crying was over and the boy slept, and now again when I write this, I was drawn back to the painful days when Tom was ill and I was reassuring myself and Nik that it was just another childhood bug, that all he needed was Calpol and an early night. And that is a place I don’t like to go but this stuff is all still so close to the surface. My coping mechanisms are good, most of the time but, given an opportunity to introspect, I leap at it.
Take this, seemingly innocent example. Checking on Tom when he’s asleep is one of the evening’s little luxuries that Nik and I share. Then one day she asked me:
‘Do you like this so much because he hasn’t got his processors or glasses on?’
How about that for loaded? Our angel, just as he was before all this happened, not how he’s going to look day in, day out for the rest of his life. How are we going to help his self-esteem if, deep down, we still linger over the gadget-free pre-meningitic version? It seems that every way we turn; every preference we show is entrenched with hidden meaning.
So – getting back to where I came in - avoiding this sort of tantrum and this sort of journey into the recent dark past is based on good battery management. Remember that.
Wednesday, January 10, 2007
Releasing the pressure valve
So I've wandered a little further out into the blogosphere (I'm glad I don't have to say that out loud - I would have to castigate myself mercilessly) following hyperlinks hither and thither. As one might imagine, I've been drawn to experiences not entirely dissimilar to mine. On the other hand, maybe you wouldn't imagine such a thing - I've questioned the sense of it on numerous occasions when the empathetic tears start to fall and my shoulders start to involuntarily shrug along with the sobs. They don't last long, by the way, these involuntary outbursts of emotion. Maybe, in fact, I've subconciously stumbled upon a coping mechanism:
Poignant Blog => Outburst of pent up emotion pertaining to our situation => Feel better and can be strong, paternal type again.
Anyway, the blogs you MUST read:
The Wait and the Wonder - Moreena writes humorously and poignantly about her family's life, particularly the impact of her six year old daughter's congenital liver condition which has led, so far, to two transplants. I've been trying to put my finger on whyMoreena's blog spoke to me; clearly there are obvious parallels - we both have first hand experience of sitting next to comatose offspring and have gained narrowly specialised medical knowledge that would stand us in good stead on Mastermind - but the thing that bit was her depiction and musings on the normal life we strive to lead when the emergencies are behind us, the anxieties have been suppressed and 'everyday' squeezes back in.
The other is My Beloved Monster & Me - the blog of Robert Rummel-Hudson who writes, mostly, about his daughter Schuyler, the Beloved Monster of the story, who has Congenital Bilateral Perisylvian Syndrome (CBPS) , his own dealings with 'the Beedies' (diabetes) and how the two of them, along with Mum occasionally, rub along and face down the challenges. He's blunt in a way that people who've been sledgehammered with a diagnosis like CBPS are allowed to be and he's wickedly funny with it.
Once you've walked in Moreena and Rob's shoes a while, I suspect you may see the world a little differently.
Poignant Blog => Outburst of pent up emotion pertaining to our situation => Feel better and can be strong, paternal type again.
Anyway, the blogs you MUST read:
The Wait and the Wonder - Moreena writes humorously and poignantly about her family's life, particularly the impact of her six year old daughter's congenital liver condition which has led, so far, to two transplants. I've been trying to put my finger on whyMoreena's blog spoke to me; clearly there are obvious parallels - we both have first hand experience of sitting next to comatose offspring and have gained narrowly specialised medical knowledge that would stand us in good stead on Mastermind - but the thing that bit was her depiction and musings on the normal life we strive to lead when the emergencies are behind us, the anxieties have been suppressed and 'everyday' squeezes back in.
The other is My Beloved Monster & Me - the blog of Robert Rummel-Hudson who writes, mostly, about his daughter Schuyler, the Beloved Monster of the story, who has Congenital Bilateral Perisylvian Syndrome (CBPS) , his own dealings with 'the Beedies' (diabetes) and how the two of them, along with Mum occasionally, rub along and face down the challenges. He's blunt in a way that people who've been sledgehammered with a diagnosis like CBPS are allowed to be and he's wickedly funny with it.
Once you've walked in Moreena and Rob's shoes a while, I suspect you may see the world a little differently.
Friday, January 05, 2007
Audiology Update
The 4th January saw Tom's 8 week tuning session for his left (sometimes referred to as 'new' or 'our') implant. Attempts to encourage him into a game whereby he put a brick on a tower every time he heard a sound didn't quite work as intended with Tom intent on adding as many bricks as possible before the urge to destroy overwhelmed him.
An even greater challenge for the audiologists (Sue and Tracey - we've had to change because of our odd publicly/privately funded state) was identifying a quiet period long enough to play a sound in and judge Tom's response. He was far too busy demanding cars from Tracey and explaining their movements to spend any time paying attention. He's two you see.
My assumption that the session was something of a washout was dispelled by the team who were more than satisfied with Tom's progress. He's hearing at below 40db across the frequency range which, if my interpretation of such things is correct, is the equivalent of a mild/moderate hearing loss. Given that his right ear has been implanted and switched on slightly longer, and definitely his 'good ear' still, I would have to declare myself supremely satisfied with progress thus far.
Equally pleasing in many ways was Tom's behaviour during the testing. He is now comfortable enought to let his inquisitive nature come to the fore. Rather than cling to me, Tom wandered off into the 'control booth' to check on Tracey's progress with his processor - we had persuaded him that she had to borrow it so she could 'fix it' - and ascertain the whereabouts of the Postman Pat van Tracey had claimed was 'lost' (he found it - he has a gift that way). He also let Tracey replace his coil when it detached - a major step foward in the 'personal space' stakes.
Nik had read somewhere that it took at least six months to get over meningitis. It seems that may be the case - he's growing more confident, happier around new people and darned cheeky with it. He's currently experimenting with how far a charming grin will get him and it has become his first line of defence when challenged on naughty behaviour. We're getting very good at stifling our own giggles.
An even greater challenge for the audiologists (Sue and Tracey - we've had to change because of our odd publicly/privately funded state) was identifying a quiet period long enough to play a sound in and judge Tom's response. He was far too busy demanding cars from Tracey and explaining their movements to spend any time paying attention. He's two you see.
My assumption that the session was something of a washout was dispelled by the team who were more than satisfied with Tom's progress. He's hearing at below 40db across the frequency range which, if my interpretation of such things is correct, is the equivalent of a mild/moderate hearing loss. Given that his right ear has been implanted and switched on slightly longer, and definitely his 'good ear' still, I would have to declare myself supremely satisfied with progress thus far.
Equally pleasing in many ways was Tom's behaviour during the testing. He is now comfortable enought to let his inquisitive nature come to the fore. Rather than cling to me, Tom wandered off into the 'control booth' to check on Tracey's progress with his processor - we had persuaded him that she had to borrow it so she could 'fix it' - and ascertain the whereabouts of the Postman Pat van Tracey had claimed was 'lost' (he found it - he has a gift that way). He also let Tracey replace his coil when it detached - a major step foward in the 'personal space' stakes.
Nik had read somewhere that it took at least six months to get over meningitis. It seems that may be the case - he's growing more confident, happier around new people and darned cheeky with it. He's currently experimenting with how far a charming grin will get him and it has become his first line of defence when challenged on naughty behaviour. We're getting very good at stifling our own giggles.
Wednesday, January 03, 2007
Celebrating Holidays and the Art of Walking
It's over seven months now since Tom was discharged from hospital. He didn't regain the ability to walk for another month or so.
A couple of days after Christmas we took a walk to see Threave Castle. Tom walked well over a mile on slippery leaves, collected sticks and bounced on the odd farmer's fence. Admittedly, much of the return journey to the car was incentivised by the promise of jelly babies but he was up for the challenge.
He also developed a worryingly defiant urge to grab barbed wire fences which we must nip in the bud.
On New Year's Day at our local park. He climbs short ladders, he goes down slides, he loves his mum... he's a happy, active two year old.
A couple of days after Christmas we took a walk to see Threave Castle. Tom walked well over a mile on slippery leaves, collected sticks and bounced on the odd farmer's fence. Admittedly, much of the return journey to the car was incentivised by the promise of jelly babies but he was up for the challenge.
He also developed a worryingly defiant urge to grab barbed wire fences which we must nip in the bud.
On New Year's Day at our local park. He climbs short ladders, he goes down slides, he loves his mum... he's a happy, active two year old.
Is this really the best way to run a health service?
I have been striving to achieve a zen-like state since Christmas. I have has lots of sleep - Tom has developed a penchant for lying in until after eight o'clock - and feel like I can face the world with a degree of calm and a level of rational thought that tended to escape me in 2006.
Then I watched a report about this on the BBC this morning, described on their website thus:
'Controversy over child referrals'
We were sent home.
Depending on your measure of a tragedy we either narrowly escaped one (our boy is still here) or fell victim (he remains profoundly deaf) in a manner not unlike that described by Dr. Rose.
A measure of balance (one that drives my wife a little bit mad) reminds me that meningitis, along with many childhood illnesses, is notoriously difficult to diagnose - there are enough desperate stories of children dying after misdiagnosis in paediatric A & E departments to illustrate that - but does putting pressure on GPs to think financially as well as medically when making such decisions really make sense... to anyone?
Then I watched a report about this on the BBC this morning, described on their website thus:
'Controversy over child referrals'
GP's here have been sent a letter detailing the cost of referring children to the local hospital.
It asks whether any of this could be done more cost effectively.
The letter says the trust spent £1.5 million referring children to the local hospital last year
It points out that 79% were discharged within a day and goes on to say "this area of activity was one which was likely to achieve cost savings"
It doesn't take much of a leap of imagination to take the same view as GP Eric Rose, quoted in the article as saying:
"I think if you're fairly new to the job, you're impressionable, you're given the impression that you're referring unreasonably - you might think again."
"I think it's potentially dangerous. It would only take one child that should go to hospital not to be sent to hospital and for there to be a tragedy and I think there would be a lot of questions asked."
I wonder if something similar had been received by our GP. We took Tom to him the day before he was admitted to hospital with pneumococcal meningitis.
We were sent home.
Depending on your measure of a tragedy we either narrowly escaped one (our boy is still here) or fell victim (he remains profoundly deaf) in a manner not unlike that described by Dr. Rose.
A measure of balance (one that drives my wife a little bit mad) reminds me that meningitis, along with many childhood illnesses, is notoriously difficult to diagnose - there are enough desperate stories of children dying after misdiagnosis in paediatric A & E departments to illustrate that - but does putting pressure on GPs to think financially as well as medically when making such decisions really make sense... to anyone?
Monday, December 11, 2006
You know its working when...
We've been experiencing an avalanche of verbal dexterity from Tom this past few weeks - all of it the sort of stuff that kids who are two-and-a-bit do and their parents think is the cutest ever (because it is) - and all of it music to our ears.
Tom is our only child - our first go at this parenting lark so I often wonder whether we would be as agog, as obsessed anyway but, with the importance of his language development being so sharply focused in our minds because of his deafness, every little step feels like a major landmark to be celebrated. So here are a few anecdotes recorded for posterity.
I've got into the habit of asking Tom what he's been up to at the childminder's. Last week he told me very clearly:
'Tom-Tom walking holding Karen's hand. Louisa-May in the buggy'.
How much information is that? Not much of a thrilling narrative I grant you but it stuck in his mind and was the most important thing to tell me when I asked. I checked with Karen; it was all true.
Tom doesn't always stick to the literal however, and that makes following the thread of his conversation a little more challenging. Last week, completely unprompted, he named his hands 'Harry' and 'Trevor' after his two favourite cuddly toys. It wasn't a one off either; Harry and Trevor have made subsequent appearances at mealtimes, helping Tom with his fork and spoon as necessary. They even have to have chairs pulled up for them - which makes me think they're evolving into fully fledged imaginary friends. I'll keep you posted about their movements.
One of the pieces of advice from AV Therapy that has stayed with me relates to the importance of staying in Tom's 'head space' - as a parent you can usually tell from context what your toddler is thinking about and, therefore, likely to be saying (hence why parents understand their offspring when everyone else thinks its nonsense). With Tom its getting less straightforward. Admittedly 90% of the time it's trains, cars and/or 'airplanes' but that other 10% can take us shooting off anywhere.
The night before last, for example. We were reading a Bob the Builder book at bed time. Bob was chatting to his completely platonic friend, assistant and project manager Wendy across a double page spread. Tom started to turn the page and it creased in a little overlapping the facing pages,
'Bob and Wendy kissing' and he burst into a fit of giggles.... and repeated the fold over and over, as we both giggled merrily to ourselves. I think all the time he spends around little girls at the childminder's might have something to do with that one.
The list goes on...suffice it to say we're as proud and as obsessed with everything our child says and, maybe by writing it here I won't feel the need to tell absolutely everyone I meet.
Tom is our only child - our first go at this parenting lark so I often wonder whether we would be as agog, as obsessed anyway but, with the importance of his language development being so sharply focused in our minds because of his deafness, every little step feels like a major landmark to be celebrated. So here are a few anecdotes recorded for posterity.
I've got into the habit of asking Tom what he's been up to at the childminder's. Last week he told me very clearly:
'Tom-Tom walking holding Karen's hand. Louisa-May in the buggy'.
How much information is that? Not much of a thrilling narrative I grant you but it stuck in his mind and was the most important thing to tell me when I asked. I checked with Karen; it was all true.
Tom doesn't always stick to the literal however, and that makes following the thread of his conversation a little more challenging. Last week, completely unprompted, he named his hands 'Harry' and 'Trevor' after his two favourite cuddly toys. It wasn't a one off either; Harry and Trevor have made subsequent appearances at mealtimes, helping Tom with his fork and spoon as necessary. They even have to have chairs pulled up for them - which makes me think they're evolving into fully fledged imaginary friends. I'll keep you posted about their movements.
One of the pieces of advice from AV Therapy that has stayed with me relates to the importance of staying in Tom's 'head space' - as a parent you can usually tell from context what your toddler is thinking about and, therefore, likely to be saying (hence why parents understand their offspring when everyone else thinks its nonsense). With Tom its getting less straightforward. Admittedly 90% of the time it's trains, cars and/or 'airplanes' but that other 10% can take us shooting off anywhere.
The night before last, for example. We were reading a Bob the Builder book at bed time. Bob was chatting to his completely platonic friend, assistant and project manager Wendy across a double page spread. Tom started to turn the page and it creased in a little overlapping the facing pages,
'Bob and Wendy kissing' and he burst into a fit of giggles.... and repeated the fold over and over, as we both giggled merrily to ourselves. I think all the time he spends around little girls at the childminder's might have something to do with that one.
The list goes on...suffice it to say we're as proud and as obsessed with everything our child says and, maybe by writing it here I won't feel the need to tell absolutely everyone I meet.
Saturday, December 02, 2006
Catching Up
I have been remiss of late so far as updates here are concerned; it's not as if nothing has happened - quite the reverse which is why there's not enough time left over for blogging.
Firstly - Tom
Although it is regarded as almost scandalous to say it in certain circles we often 'forget' Tom is deaf. The bright blue coils stuck to the sides of his head are still there (complete with a picture of a tiger on one and a monkey on the other) of course so when I say 'forget' what I mean is that we don't have to make any special considerations when we are talking to him. He repeats pretty much everything that is said, to him or otherwise, and his understanding is impressive and subjective. With his potty-mouthed uncle staying with us at the moment, that makes for some risque situations but, luckily, Tom hasn't cussed at the vicar just yet. He's at the age where he often chooses to ignore what is said to him because it isn't in line with his desires - the fact is that most of our daily challenges are based on him being two rather than being deaf.
And that is a very cool place to be.
Sure, if we look objectively at the pattern of our lives now, there are plenty of 'new' elements that make things less straightforward; from simple things like ensuring batteries are charged, processors are tested and coils staying on all the way to the scheduling of appointments and working with professionals. But, just like everything, you get used to your new reality and, hey, raising a kid brings with it all manner of new skills and situations; by thinking about our situation as just an extension of that it becomes much more managable 'head-wise'.
Claims and forms and appeals and stuff
The good news is that the DWP came through with the Disability Living Allowance for Tom after an appeal which included contributions from the National Deaf Children's Society, (one of) our Teachers of the Deaf and a particularly passionate plea written by Nik which managed to stay just the right side of vitriolic while making it plain that we didn't appreciate being made to jump through all these ridiculous hoops while others, in the exact same situation, received payment after the first application.
There are very good reasons why the DLA isn't handed out without consideration and a certain level of proof but the inconsistency which seems to dog all our dealings with public services can get a little wearing.
As for the greater issue of the ongoing costs of Tom's left implant: we have yet to hear from the Healthcare Commission, who are conducting a review of the PCT's decision. When I say 'conducting a review' I mean ' leaving in a pile of other appeals until their overstretched staff can get to it'. Probably.
Since the first appeal Rushcliffe PCT have disappeared; merged with five others to form some super Nottinghamshire Teaching PCT (this is an approximation - it makes for a long letterhead whatever it is). Our GP has kept up the requests and the funding situation is set to be reviewed by some august panel.... so more watching of this space is required.
So...there's a lot of shrieking going on downstairs. Tom's imagination and sense of fun is growing exponentially. He also has an occasionally abstract view of the world - moments ago he decided that a discarded satsuma skin was an umbrella and that it was raining in the dining room so it needed to be on his head. That is what AV Therapy does to you - and it keeps us all marvellously entertained.
Firstly - Tom
Although it is regarded as almost scandalous to say it in certain circles we often 'forget' Tom is deaf. The bright blue coils stuck to the sides of his head are still there (complete with a picture of a tiger on one and a monkey on the other) of course so when I say 'forget' what I mean is that we don't have to make any special considerations when we are talking to him. He repeats pretty much everything that is said, to him or otherwise, and his understanding is impressive and subjective. With his potty-mouthed uncle staying with us at the moment, that makes for some risque situations but, luckily, Tom hasn't cussed at the vicar just yet. He's at the age where he often chooses to ignore what is said to him because it isn't in line with his desires - the fact is that most of our daily challenges are based on him being two rather than being deaf.
And that is a very cool place to be.
Sure, if we look objectively at the pattern of our lives now, there are plenty of 'new' elements that make things less straightforward; from simple things like ensuring batteries are charged, processors are tested and coils staying on all the way to the scheduling of appointments and working with professionals. But, just like everything, you get used to your new reality and, hey, raising a kid brings with it all manner of new skills and situations; by thinking about our situation as just an extension of that it becomes much more managable 'head-wise'.
Claims and forms and appeals and stuff
The good news is that the DWP came through with the Disability Living Allowance for Tom after an appeal which included contributions from the National Deaf Children's Society, (one of) our Teachers of the Deaf and a particularly passionate plea written by Nik which managed to stay just the right side of vitriolic while making it plain that we didn't appreciate being made to jump through all these ridiculous hoops while others, in the exact same situation, received payment after the first application.
There are very good reasons why the DLA isn't handed out without consideration and a certain level of proof but the inconsistency which seems to dog all our dealings with public services can get a little wearing.
As for the greater issue of the ongoing costs of Tom's left implant: we have yet to hear from the Healthcare Commission, who are conducting a review of the PCT's decision. When I say 'conducting a review' I mean ' leaving in a pile of other appeals until their overstretched staff can get to it'. Probably.
Since the first appeal Rushcliffe PCT have disappeared; merged with five others to form some super Nottinghamshire Teaching PCT (this is an approximation - it makes for a long letterhead whatever it is). Our GP has kept up the requests and the funding situation is set to be reviewed by some august panel.... so more watching of this space is required.
So...there's a lot of shrieking going on downstairs. Tom's imagination and sense of fun is growing exponentially. He also has an occasionally abstract view of the world - moments ago he decided that a discarded satsuma skin was an umbrella and that it was raining in the dining room so it needed to be on his head. That is what AV Therapy does to you - and it keeps us all marvellously entertained.
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