Saturday morning has become 'Dad and Tom' time. Leaving Nicky to enjoy some man-free space, we take ourselves off on minor adventures. They aren't particularly dramatic adventures I grant you but, because my car is old and two door, Tom rides up front and any trip out has a companionable feel that we both revel in.
So this Saturday morning's activities took in the car wash and the swimming pool. Tom has had a 'thing' for cleaning cars dating back some time. This usually just involves him rubbing his bare hand over a filthy car while saying 'cleaning! cleaning!' before transferring said filth to my trouser leg. I thought it was high time he saw how it could be done without spreading road grime all over my entire wardrobe and our house.
In the back of my mind I thought it might not be plain sailing - I've often thought myself that the 'thing that scares the water away' looks as if it may not detect the windscreen in time and regularly check that I've got enough room to duck so how it might all seem to a two year old experiencing it for the first time...? What with the other-worldly sounds and vaguely claustrophobic air?
As it turned out, Tom rose to the challenge. Beyond a few apprehensive 'daddy cuddle's' the wee man coped admirably - its darned noisy in there but Tom's bilaterals really seem to be helping him in such situations. I could easily comfort and reassure him; he could evidently hear much of what I was saying above the din.
So we took ourselves on to the more challenging part of the morning - the swimming pool. Tom ain't what you'd call a water baby. Early experiences in cold pools has made him particularly suspicious of the whole affair and, as you might imagine, throw in not being able to hear while you're splashing around and you have a recipe for trouble. Nicky finds the whole experience quite stressful and fears that she passes this on to Tom in the pool so its left to me to attend to the gradual, confidence-building introduction to the water.
Things are going in the right direction - Tom will happily go down a small slide that ends with a splash so long as the waiting water is warm. He'll clamber in and out and will come in to deeper water so long as he's got hold of me (usually by the chest hair which is a not entirely pleasant experience). This is fine for now - at some point we need to either develop the sophisticated signing required to reassure and teach Tom to swim, wait until we can give him instruction verbally on the poolside that he can retain, or Advanced Bionics come out with a waterproof model. Any suggestions gratefully received.
For now we just attract a different set of curious looks from everyone around us. Instead of the rather arresting sight of wired gadgetry stuck to my boy's head causing people to stare I see the dawning realisation pass across faces; the frantic waving of hands has something to do with why we're not shouting like every other father and son in the pool.
Saturday, November 25, 2006
Friday, November 24, 2006
The Miracle of Flight
We've just been away for a long weekend and, much to Tom's delight, it involved 'airplanes'. His excitement was something to behold, the whole airport/aeroplane experience only being marred by the odd rituals now involved in our passage through airport security.
People with cochlear implants aren't supposed to go through the big scanners. In addition to, I presume, setting them off even if you removed every shred of clothing, there is a risk of wiping the maps in the processor. But that wasn't all; manufacturers do a 'loaner' scheme providing implantees with spare, mapped processors for the duration of the trip (which reminds me, they need to be returned - there's a charge associated with failure to return in the order of £2000 or so) which meant that hand luggage has to be emptied and suspicious brushed aluminium objects with lots of dials have to be explained.
So picture the scene; after trying to persuade an active toddler, who is almost beside himself with excitement at the prospect of seeing 'airplanes', to stand in line for 10 minutes we are confronted by serious looking people who, in current times, must suspect everything and everybody. The general air of seriousness that pervades the security check registers with Tom who starts to get agitated and clingy just at the time we are presenting our 'Don't scan our baby, it'll break him' letter from the Implant Team (in the appropriate language), with that degree of nervousness that accompanies many dealings with uniformed people (particularly those with the power to inspect you more intimately than you'd usually feel comfortable with).
As far as 'scenes' go, we fit the particularly English stereotype of hating to be in the centre of one. If others in the queue hadn't notice the strange things on the sides of Tom's head while we were waiting their attention is certainly captured at this point. We have a plan; I go through the detector first so I can be there to receive Tom and comfort him while he is 'inspected'. Unfortunately, by the time I get in position, he's bawling; scared of the big bloke hanging over us, frustrated by the hold up on the way to the 'airplanes' and a bit peeved that he can't do what Daddy has just done and gone through the 'tunnel' (he does love a good tunnel). By now everyone is staring (or, if not, it feels like they are) and I fight the desperate urge to shout 'They're a form of mind control - I just didn't want to electrocute him in front of you!'.
And then its over and Tom gets to see more 'airplanes and it's all OK. The customs officers are never anything less than kind, considerate and desperately keen to stop Tom screaming at them and, if we fly often enough (and lord knows we try), he will get used to it.
Will we get used to the staring? More importantly, will Tom be able to deal with it? You can tell yourself as many times as you like that they're the rude, ignorant ones and you can try any number of strategies - ignoring, stupid comments, staring back - but self-conciousness is dangerously crippling and the attention is an all-too-raw reminder of what has happened these past seven months.
As is the way of such things, Tom put it all behind him with consummate ease and attached himself to the plate glass overlooking the hard standing and runway until it was time to fly. When he announced his heartfelt desire to 'Cuddle the airport', we knew the security experience had not left any dark shadows.
People with cochlear implants aren't supposed to go through the big scanners. In addition to, I presume, setting them off even if you removed every shred of clothing, there is a risk of wiping the maps in the processor. But that wasn't all; manufacturers do a 'loaner' scheme providing implantees with spare, mapped processors for the duration of the trip (which reminds me, they need to be returned - there's a charge associated with failure to return in the order of £2000 or so) which meant that hand luggage has to be emptied and suspicious brushed aluminium objects with lots of dials have to be explained.
So picture the scene; after trying to persuade an active toddler, who is almost beside himself with excitement at the prospect of seeing 'airplanes', to stand in line for 10 minutes we are confronted by serious looking people who, in current times, must suspect everything and everybody. The general air of seriousness that pervades the security check registers with Tom who starts to get agitated and clingy just at the time we are presenting our 'Don't scan our baby, it'll break him' letter from the Implant Team (in the appropriate language), with that degree of nervousness that accompanies many dealings with uniformed people (particularly those with the power to inspect you more intimately than you'd usually feel comfortable with).
As far as 'scenes' go, we fit the particularly English stereotype of hating to be in the centre of one. If others in the queue hadn't notice the strange things on the sides of Tom's head while we were waiting their attention is certainly captured at this point. We have a plan; I go through the detector first so I can be there to receive Tom and comfort him while he is 'inspected'. Unfortunately, by the time I get in position, he's bawling; scared of the big bloke hanging over us, frustrated by the hold up on the way to the 'airplanes' and a bit peeved that he can't do what Daddy has just done and gone through the 'tunnel' (he does love a good tunnel). By now everyone is staring (or, if not, it feels like they are) and I fight the desperate urge to shout 'They're a form of mind control - I just didn't want to electrocute him in front of you!'.
And then its over and Tom gets to see more 'airplanes and it's all OK. The customs officers are never anything less than kind, considerate and desperately keen to stop Tom screaming at them and, if we fly often enough (and lord knows we try), he will get used to it.
Will we get used to the staring? More importantly, will Tom be able to deal with it? You can tell yourself as many times as you like that they're the rude, ignorant ones and you can try any number of strategies - ignoring, stupid comments, staring back - but self-conciousness is dangerously crippling and the attention is an all-too-raw reminder of what has happened these past seven months.
As is the way of such things, Tom put it all behind him with consummate ease and attached himself to the plate glass overlooking the hard standing and runway until it was time to fly. When he announced his heartfelt desire to 'Cuddle the airport', we knew the security experience had not left any dark shadows.
Tuesday, November 14, 2006
Just the wrong height...
Largely speaking Tom is a pretty laid back two year old. He talks alot... actually, the word 'incessantly' is probably more appropriate... but he doesn't really get 'hyper'. He likes a bit of a dance now and again, he most certainly approves of tickling but he doesn't reach that 'bouncing off the walls' level that you see with some kids. What he does do occasionally, though, is bite clothing. Like a puppy he'll get a bit of shirt between his teeth and hold it. We're training him not to but now and again he forgets himself and, unlike with a puppy, a tap on the nose with a rolled up newspaper isn't approved of.
Yesterday the 'biting clothing' thing nearly cost me dear. Tom's reached the point where his head is just at that height - you know what I'm talking about? As a dad I expect the odd accidental injury of a sensitive nature; overzealous tickling may lead to the odd stray foot landing somewhere but I certainly don't anticipate walking into the kitchen and having my son sink his teeth into a little more than the fold in my trousers.
Had to laugh about it afterwards though... once the tears have been wiped away (my tears that is). I think the stern faces and chorus of 'daddy's hurt' has sunk in with Tom - not unlike his teeth.
Yesterday the 'biting clothing' thing nearly cost me dear. Tom's reached the point where his head is just at that height - you know what I'm talking about? As a dad I expect the odd accidental injury of a sensitive nature; overzealous tickling may lead to the odd stray foot landing somewhere but I certainly don't anticipate walking into the kitchen and having my son sink his teeth into a little more than the fold in my trousers.
Had to laugh about it afterwards though... once the tears have been wiped away (my tears that is). I think the stern faces and chorus of 'daddy's hurt' has sunk in with Tom - not unlike his teeth.
Monday, November 13, 2006
Back to the old routine
Another day, another milestone...
Nik returned to work today for the first time since Tom contracted meningitis. It hasn't been the most pleasant of transitions for her as one might expect; there's enough personal and societal guilt tied up with being a working mother (however hard we try and rationalise it all and however much people think things have moved on) and putting our son into childcare without the added complications that prolonged illness and deafness bring. Jeez, there's a whole separate blog and debate just there. Anyway, we won't open that one up too far just now.
The return to the childminder (Karen) has been phased over the last few weeks, ostensibly for Tom to get used to spending time with her again but also to allow Nik a little down time. As it is, appointments, letter writing and filing (Tom needs a full time clerk to manage his correspondence) have messed up any chance of that happening. Couple that with the fact that the boy has cried his eyes out at the mere mention of Karen and you can begin to imagine how stressful ths period has been.
Yes, more stress.
But today Tom defied all expectations. I told him where we were going once he was belted in 'daddy's car' and, although he wasn't his usual, van-spotting ball of chat, he took the news well. It seemed a particularly adult, stolid reaction; he bore the bad tidings and, although clearly not over-enamoured with the prospect, he was resigned to the inevitability of it all. His only words on the journey were 'Daddy sit down Karens'.
So there we were a few minutes later, daddy sat down as requested, with Tom standing close. Then, having decided he was ready, Tom said 'daddy work, daddy's car'. I was dismissed - 'Don't drag this out any further father, your work here is done'. He was so brave, I nearly cried.
Naturally, Nik thought I was just making it up so that her first day was less stressful. Work still sucked but, hey, that's work for you.
Nik returned to work today for the first time since Tom contracted meningitis. It hasn't been the most pleasant of transitions for her as one might expect; there's enough personal and societal guilt tied up with being a working mother (however hard we try and rationalise it all and however much people think things have moved on) and putting our son into childcare without the added complications that prolonged illness and deafness bring. Jeez, there's a whole separate blog and debate just there. Anyway, we won't open that one up too far just now.
The return to the childminder (Karen) has been phased over the last few weeks, ostensibly for Tom to get used to spending time with her again but also to allow Nik a little down time. As it is, appointments, letter writing and filing (Tom needs a full time clerk to manage his correspondence) have messed up any chance of that happening. Couple that with the fact that the boy has cried his eyes out at the mere mention of Karen and you can begin to imagine how stressful ths period has been.
Yes, more stress.
But today Tom defied all expectations. I told him where we were going once he was belted in 'daddy's car' and, although he wasn't his usual, van-spotting ball of chat, he took the news well. It seemed a particularly adult, stolid reaction; he bore the bad tidings and, although clearly not over-enamoured with the prospect, he was resigned to the inevitability of it all. His only words on the journey were 'Daddy sit down Karens'.
So there we were a few minutes later, daddy sat down as requested, with Tom standing close. Then, having decided he was ready, Tom said 'daddy work, daddy's car'. I was dismissed - 'Don't drag this out any further father, your work here is done'. He was so brave, I nearly cried.
Naturally, Nik thought I was just making it up so that her first day was less stressful. Work still sucked but, hey, that's work for you.
Wednesday, November 08, 2006
New Friends
Back in June, a few days before Tom received his first implant, Nik visited the Ear Foundation for an open day. Directed at prospective/potential implantees and their families, the day was a tremendous source of information imparted not only by professionals but also those who’ve been through it and went a long way to addressing Nik’s concerns. What it also did - probably the most important benefit in fact - was prove that we weren’t alone.
I don’t have many clear memories of my teenage years; age and a general feeling that I didn’t enjoy the experience very much has led to a suspicion that I watched those years on a bootleg videotape rather than participated in them. One of the few clear memories I have, though, is of having a persistent feeling that I wasn’t really in on the joke. Life was going on, sure, but when I approached, all the participants put their hands in their pockets, started whistling (metaphorically of course) and waited until I’d gone away until continuing with life without me. Why am I bringing up this crushing teenage paranoia? I’m not entirely sure; it might be to do with the fact that I’ve been awake far too long today but I did feel a sense of exclusion again during the early appointments after Tom’s deafness was diagnosed. As a family we were isolated; we were told about this group of people like us but, until we spoke to or met any of them, it didn’t really help.
This is where The Ear Foundation come in (it’s also where CICS, the meningitis trust, NDCS and the CICircle to name a few come in too, bless ‘em all). On that day in June, Nik learnt a great deal about devices, therapies and services but she also met Donna and her son Noah. Noah is a few months younger than Tom… there isn’t much in it…but that isn’t where the similarity ends of course. Noah and Tom also share the misfortune of contracting pneumococcal meningitis at the same time, and losing their hearing as a result. I wouldn’t wish the pain, tears and heartache of what we’ve been through on anyone but to be able to share with people who know exactly what its like without any need to explain… it has made an enormous difference.
Contact with Donna, Richard (her husband) and Noah has continued through emails, phone calls and a brief meeting. Last weekend we met up again at the Ear Foundation’s family weekend in Centerparcs where we sat in a restaurant chatting about our boys and our experiences. Tom and Noah charged around, laughing and just being two years old. We could have talked all evening.
I don’t have many clear memories of my teenage years; age and a general feeling that I didn’t enjoy the experience very much has led to a suspicion that I watched those years on a bootleg videotape rather than participated in them. One of the few clear memories I have, though, is of having a persistent feeling that I wasn’t really in on the joke. Life was going on, sure, but when I approached, all the participants put their hands in their pockets, started whistling (metaphorically of course) and waited until I’d gone away until continuing with life without me. Why am I bringing up this crushing teenage paranoia? I’m not entirely sure; it might be to do with the fact that I’ve been awake far too long today but I did feel a sense of exclusion again during the early appointments after Tom’s deafness was diagnosed. As a family we were isolated; we were told about this group of people like us but, until we spoke to or met any of them, it didn’t really help.
This is where The Ear Foundation come in (it’s also where CICS, the meningitis trust, NDCS and the CICircle to name a few come in too, bless ‘em all). On that day in June, Nik learnt a great deal about devices, therapies and services but she also met Donna and her son Noah. Noah is a few months younger than Tom… there isn’t much in it…but that isn’t where the similarity ends of course. Noah and Tom also share the misfortune of contracting pneumococcal meningitis at the same time, and losing their hearing as a result. I wouldn’t wish the pain, tears and heartache of what we’ve been through on anyone but to be able to share with people who know exactly what its like without any need to explain… it has made an enormous difference.
Contact with Donna, Richard (her husband) and Noah has continued through emails, phone calls and a brief meeting. Last weekend we met up again at the Ear Foundation’s family weekend in Centerparcs where we sat in a restaurant chatting about our boys and our experiences. Tom and Noah charged around, laughing and just being two years old. We could have talked all evening.
Thursday, November 02, 2006
Interesting reading... and a date for your diaries
Over at Lotte Sofie Lotte's dad, who goes by the name of Cloggy, has posted a link to an Advanced Bionics compiled pdf summarising bilateral implant research. A very handy document to take to your appeals...or peruse and marvel at the wonders of modern medicine.
It may also be useful pre-reading for this Twilight lecture due to be given by Professor Quentin Summerfield on 25th January 2007. Hopefully the Ear Foundation will be webcasting it as its subject matter - Challenges to be overcome before cochlear implants can be provided bilaterally in the National Health Service - raised more than a few hairs on my neck.
Not-so-interesting small world facts pertaining to this and putting my interest in context:
It may also be useful pre-reading for this Twilight lecture due to be given by Professor Quentin Summerfield on 25th January 2007. Hopefully the Ear Foundation will be webcasting it as its subject matter - Challenges to be overcome before cochlear implants can be provided bilaterally in the National Health Service - raised more than a few hairs on my neck.
Not-so-interesting small world facts pertaining to this and putting my interest in context:
- Prof Summerfield has published the only, as far as I can make out, bilateral cost-effectiveness study in this country (a few years ago, based on adults - I banged on about it back in July)
- Prof Summerfield's opinion was sought for Tom's bilateral appeal case. He gave an interestingly ambiguous answer that we felt leaned in favour and justified bilaterals for post-meningitic cases but the PCT decided it leant far enough the other way.
- I was asked to speak at the same conference from the patient/service user perspective. Prior commitments (a mountain covered in snow and lots of vin chaud) prevented it.
I wait with baited breath.
Marjorie Sherman Lecture
I shirked my bathtime duties last night and attended the Marjorie Sherman Memorial Lecture at The Ear Foundation. You look for silver linings where you can and being within 10 minutes drive of the HQ for the only charity dedicated to cochlear implant users in this country is something of a boon. Marvellous people.
The lecture, 'Advances in Cochlear Implantation for Children: from hesitant beginnings to an exciting Future', was delivered by Mark Lutman (short biog.), Professor of Audiology at Southampton University. In cochlear implant terms, 1989 is one of the years; a defining point when ethical questions had to be confronted and the brave decision taken to implant the first paediatric patient in the UK. The lecture took us from that point, through to the current practise that we have benefitted from and on to cover some of the research that makes the future look incredibly promising for Tom and others.
All fascinating and well delivered; I even understood some of it. Bilaterals were touched on; Lutman believes in their value and had some very interesting data that demonstrated the improved sound localisation bilateral implantation brings. The fact that, in Germany and elsewhere, such implantation is the norm was mentioned of course...as was the fact that, in Southampton, requests to PCTs for bilateral funding are almost always accepted. The fact that I smiled ruefully rather than spiralling into a pit of righteous indignation shows just how far I've come don't you think?
The lecture was broadcast live on the web - you will find it alongside the other Ear Foundation webcasts . If you find yourself a free hour, give it a listen. In fact, clear a morning and listen to David Luterman and the Gerry O'Donoghue/Sue Archbold lecture too.
Prof. Mark Lutman's lecture - direct link
But what about Tom?
The lecture, 'Advances in Cochlear Implantation for Children: from hesitant beginnings to an exciting Future', was delivered by Mark Lutman (short biog.), Professor of Audiology at Southampton University. In cochlear implant terms, 1989 is one of the years; a defining point when ethical questions had to be confronted and the brave decision taken to implant the first paediatric patient in the UK. The lecture took us from that point, through to the current practise that we have benefitted from and on to cover some of the research that makes the future look incredibly promising for Tom and others.
All fascinating and well delivered; I even understood some of it. Bilaterals were touched on; Lutman believes in their value and had some very interesting data that demonstrated the improved sound localisation bilateral implantation brings. The fact that, in Germany and elsewhere, such implantation is the norm was mentioned of course...as was the fact that, in Southampton, requests to PCTs for bilateral funding are almost always accepted. The fact that I smiled ruefully rather than spiralling into a pit of righteous indignation shows just how far I've come don't you think?
The lecture was broadcast live on the web - you will find it alongside the other Ear Foundation webcasts . If you find yourself a free hour, give it a listen. In fact, clear a morning and listen to David Luterman and the Gerry O'Donoghue/Sue Archbold lecture too.
Prof. Mark Lutman's lecture - direct link
But what about Tom?
- He has a Stuart Little addiction that we're trying to manage although he doesn't like the washing machine bit and we need to be quicker on the fast-forward button.
- He's suffering some separation anxiety with going back to the child-minder. It involves alot of snot at the moment.
- He looks particularly professorial in his new glasses; he tends to peer over them as they slide down his nose (a little refitting is in order)
Wednesday, October 25, 2006
Left Implant is Go!!!
Following on from dad and Nik's 'testing' of the new implant, we've been talking to Tom with his left implant only for a few short periods today... and its all working a treat. He responds to his name, repeats certain recognisable words - important things like 'dummy' and 'monkey' - and is seemingly content with just that input rather than the demand for the right implant that we were seeing last week. The confidence this brings in terms of Tom's long-term development is enormous but, even in the short term, the redundancy means that our ever-present fear of processor breakdown or any other malfunction is greatly dissipated.
Healthwatch
As for the croaky voice that the wee fella had at the start of the week that we had attributed to his screaming fit? Well it has turned into a full-on sore throat and cold. When he speaks Tom sounds like a 40 a day smoker with a rib-rattling cough to go with it. Does it stop him talking though? Not a chance.
He still had a fair stab at 'chameleon' when reading together tonight. You can see that I'm focussing on useful vocabulary.
We were just pretending...
We had an unusual experience today in Auditory Verbal Therapy. We were developing pretend play with 'Mummy','Daddy' and 'Tom-Tom' figures were going to the park, eating their tea of playdoh potatoes etc. When it came to pretend bedtime and time for the lights to go off Tom burst into tears. I don't think he's quite separated pretend from reality...or was so immersed that he was that Playmobil boy.
Tell me this isn't uncommon...
Healthwatch
As for the croaky voice that the wee fella had at the start of the week that we had attributed to his screaming fit? Well it has turned into a full-on sore throat and cold. When he speaks Tom sounds like a 40 a day smoker with a rib-rattling cough to go with it. Does it stop him talking though? Not a chance.
He still had a fair stab at 'chameleon' when reading together tonight. You can see that I'm focussing on useful vocabulary.
We were just pretending...
We had an unusual experience today in Auditory Verbal Therapy. We were developing pretend play with 'Mummy','Daddy' and 'Tom-Tom' figures were going to the park, eating their tea of playdoh potatoes etc. When it came to pretend bedtime and time for the lights to go off Tom burst into tears. I don't think he's quite separated pretend from reality...or was so immersed that he was that Playmobil boy.
Tell me this isn't uncommon...
Tuesday, October 24, 2006
Bilateral Progress, Conferences and Being Two
Tom has been switched on bilaterally for a week and a half now. The left (new) ear is still mapped very conservatively but there are signs.... small signs. His grandfather said that Tom turned straight to him when he came into the room out of his sight line and spoke. Just the sort of response we're hoping for.
We occasionally experiment with speaking to Tom when he's only got his left ear 'on' - Nik noticed some verbal mimicking last night so his brain is starting to work something out. He still demands the right is switched on too, but then, he's always been a big fan of symmetry - wouldn't countenance one hearing aid at all; it always had to be two.
Listening to the Pros
We occasionally experiment with speaking to Tom when he's only got his left ear 'on' - Nik noticed some verbal mimicking last night so his brain is starting to work something out. He still demands the right is switched on too, but then, he's always been a big fan of symmetry - wouldn't countenance one hearing aid at all; it always had to be two.
Listening to the Pros
I attended a conference run by the Ear Foundation last week – ‘Parenting in the Cochlear Implant Era’. Got to hand it to the Ear Foundation - they put together an impressive array of speakers that included David Luterman, one of the big names in the field of audiology (worthy of autograph-hunting it would seem… although I should be careful what I say having once asked Jakob Nielsen to sign a poster featuring a cymbal-playing monkey.).
The day’s target audience was audiologists, speech and language therapists, and teachers of the deaf; essentially all flavours of professional that we’ve had wandering through our lives these past six months. As you might imagine, a number of chords were struck, not least by the parent who gave an eloquent, humorous and reflective account of parental support needs. He referred back to the early days, soon after the diagnosis of his son’s deafness, when they could barely move for workers and how, now his son has been implanted for some 10 years or more, the visits have dwindled regardless of need.
We are at the start of this process – our current list of regular visitors and appointments stands at:
- Education service Teacher of the Deaf (once a fortnight)
- Cochlear Implant Team Teacher of the Deaf (once a quarter or so)
- Cochlear Implant Team Speech and Language Therapist (once a quarter)
- Auditory Verbal Therapy (once every two-three weeks)
- Audiology Mapping sessions (once every four weeks for each ear – haven’t quite worked out whether they are in sync or not)
- Community Paediatrician (once a quarter or so)
All excellent to a greater or lesser extent…but where have we gained the most insight and support? The parent speaker hit the nail on the head and the Ear Foundation is fully aware of the key element – its other parents we need. You cannot underestimate the relief felt when you don’t have to explain anything and you can cut to the chase about comparing harnesses, mapping experiences and therapists.
Hopefully, we can also compare homework answers. We’ve recently entered the world of ‘The Protocol’ a sizable folder of tables and forms that challenged our knowledge of Tom’s language development – and we thought we were attentive parents.
‘Does he pronounce ‘d’s and ‘l’s?’
‘Does he make and understand complex statements involving two or more actions?’
We’d tried to be good, liberal parents and not get involved in comparing Tom to other children; now we have forms to help us do it in a thorough, structured fashion. I fear we might get told off and kept behind after class– between the appointments schedule, work and looking after the little blighter something has to give.
Watershed Weekend
Tom went to stay with my parents this weekend. For the first time since his illness, we took advantage of Hotel Nanny and Papa while we snuck off to London to catch up with friends. All the assorted professionals in our lives will be delighted with this news as were the hosts, who were thoroughly entertained by Tom’s comedy repertoire, insatiable desire for stories on grandparent’s knees and willingness to succumb to requests for hugs and kisses.
We coped too. Numerous friends greeted us with ‘Where’s Tom?’, he being far more popular than us these days, but his absence allowed us to have an ill-advised quantity of red wine and stay up far, far later than was good for us.
Tom barely noticed us when we went to pick him up, ensconced as he was in Nanny's armchair looking as sweet as you like. He'd managed to talk his grandparents out of lunchtime naps which may well have contributed to the 'overtired' tantrum-to-end-all-tantrums we experienced when we got him home. That's payback for you.
Monday, October 16, 2006
Just when you thought you'd got enough appointments
Months before he got ill with the meningitis that left him deaf, we had already had cause to introduce Tom to the Eye and Ear, Nose and Throat department of Nottingham's QMC. The slight squint that we'd noticed when he got tired or was concentrating led us to get his eyes tested. The latest follow up appointment was today - drawing us back to the way-too-familiar hospital where we have spent just a little too much time this year.
We're getting better at it; better at compartmentalizing and rationalizing, dealing with the here and now rather than the darker then. True, the stomach still knots when we drive under the ringroad and approach the building but, as we steer past A&E, Tom's excited shouts of 'tunnel, tunnel!' help lift our mood.
Appointments of this type with small children rely so much on the experience, skill and speed of the practitioner. I don't want to explain any more why Tom's excessively hesitant around people with gadgets who want to touch his head; you've got the big file - work it out. Today we experienced both good and bad - pretty much par for our course. The big leap forward was Tom's acceptance of the partially blacked out glasses. This was followed by a less-than-successful attempt to diagnose the prescription required. We're not patient parents in these circumstances any more. Tell us what you need and we will do our level best to get Tom to comply - hovering in the background while our son gets increasingly hysterical does not help.
The upshot is that Tom is long-sighted; the squint is his brain's way of trying to bring the world into focus and it does it pretty successfully although a bit of help won't go amiss and may even correct it. So we've come away with a glasses prescription and more wonderful opportunities to make frequent trips to the hospital.
Media Star - again
Via this blog the Nottingham Evening Post learnt of Tom's switch on last week and were keen to run a follow-up story. You can read it at 'Let's Hear it For Tom and Gang'. The paper version took up all of page three and included a large, and very cute, photo of Tom cupping his ears. I'm going to have to see if I can get a print of it.
Being of a slightly disgruntled nature these days, I am not entirely happy with the ending. Don't get me wrong - its a very positive story that shows how grateful we are to all the people who've supported us but the note it ends on, a repetition of the PCT's policy reasoning, left a sour taste. I've given my two penn'oth in Further Media Experiences but a right to reply in print would have been nice.
Appeal Process Update
We're getting better at it; better at compartmentalizing and rationalizing, dealing with the here and now rather than the darker then. True, the stomach still knots when we drive under the ringroad and approach the building but, as we steer past A&E, Tom's excited shouts of 'tunnel, tunnel!' help lift our mood.
Appointments of this type with small children rely so much on the experience, skill and speed of the practitioner. I don't want to explain any more why Tom's excessively hesitant around people with gadgets who want to touch his head; you've got the big file - work it out. Today we experienced both good and bad - pretty much par for our course. The big leap forward was Tom's acceptance of the partially blacked out glasses. This was followed by a less-than-successful attempt to diagnose the prescription required. We're not patient parents in these circumstances any more. Tell us what you need and we will do our level best to get Tom to comply - hovering in the background while our son gets increasingly hysterical does not help.
The upshot is that Tom is long-sighted; the squint is his brain's way of trying to bring the world into focus and it does it pretty successfully although a bit of help won't go amiss and may even correct it. So we've come away with a glasses prescription and more wonderful opportunities to make frequent trips to the hospital.
Media Star - again
Via this blog the Nottingham Evening Post learnt of Tom's switch on last week and were keen to run a follow-up story. You can read it at 'Let's Hear it For Tom and Gang'. The paper version took up all of page three and included a large, and very cute, photo of Tom cupping his ears. I'm going to have to see if I can get a print of it.
Being of a slightly disgruntled nature these days, I am not entirely happy with the ending. Don't get me wrong - its a very positive story that shows how grateful we are to all the people who've supported us but the note it ends on, a repetition of the PCT's policy reasoning, left a sour taste. I've given my two penn'oth in Further Media Experiences but a right to reply in print would have been nice.
Appeal Process Update
We've had notification that the Healthcare Commission have completed their initial investigation and are proceeding with a full review of the case. Watch this space - for some months probably as there's a bit of a queue. Understaffed or are we a dissatisfied nation when it comes to the Health Service? Don't answer that.
Tom's Cuteness CheckI've just popped in to spy on him sleeping and you can all rest assured - he's still as cute as ever. Besides still obsessing about 'Airplanes', Tom is currently making us giggle by mimicking a phrase picked up at AV UK. To help with getting Tom to understand what's happening next and do things he didn't necessarily enjoy we taught him 'First... we'll do this... Then.. we'll do the thing you like'. No sooner is 'First...' out of our mouths then Tom is already replying 'Theeeenn...' as if to hurry us on to the important stuff - while perfectly mimicking our tone.
Hunting Conkers
It's been a while since I posted a Tom pic. This was taken a couple of weekends ago when we went hunting for conkers.
Saturday, October 14, 2006
And then there were two...
The second of Tom's switch on sessions for implant number two is now behind us. Normally an enthusiastic participant, a combination of things conspired to make this latest visit more testing than previously. We're only guessing of course but we saw the initial excitement at hearing these new sounds give way to a degree of discomfort that needed cuddles to be overcome.
These mapping sessions, while charged with significance and emotion for us parents, also have a degree of tedium for the observer. Endless beeps are played while the audiologists look for degrees of perception and/or discomfort. For Tom, however, the endless listening must be tiring and back-to-back appointments on top of the kind of schedule he's had over recent months meant things got a bit teary on a number of occasions.
We left the Implant Centre with Tom's shiny new kit, made the short journey home where the boy quickly installed himself in front of CBeebies with a drink and a biscuit. Unfortunately we saw the drink again a few minutes after consumption and Tom continued to be out of sorts for the rest of the afternoon. Not wanting to burden his tired brain and delicate demeanour with these new confusing sounds, however conservative the initial map was, we decided to leave the new processor off until the following morning.
The rest of the weekend has passed off without any further problems. We don't anticipate any dramatic changes with the second implant, at least not yet, and it is always going to be difficult to aportion responsibility to the bilateral state while Tom is on such a steep development curve anyway. He is, according to assessments carried out at AV UK and by local Teachers of the Deaf, already within the normal range for speech and language understanding for his age. The benefits are going to be seen over the coming years and particularly when nursery begins in just under a year.
The most significant thing so far though is that Tom can now here the alarm beep that sounds when the headpiece falls off and he seems far more aware of both of the implants now, having explored them much more with his hands. This familiarity is going to be increasingly important as he returns to childcare part-time and may well have to help out his childminder in the coming months.
These mapping sessions, while charged with significance and emotion for us parents, also have a degree of tedium for the observer. Endless beeps are played while the audiologists look for degrees of perception and/or discomfort. For Tom, however, the endless listening must be tiring and back-to-back appointments on top of the kind of schedule he's had over recent months meant things got a bit teary on a number of occasions.
We left the Implant Centre with Tom's shiny new kit, made the short journey home where the boy quickly installed himself in front of CBeebies with a drink and a biscuit. Unfortunately we saw the drink again a few minutes after consumption and Tom continued to be out of sorts for the rest of the afternoon. Not wanting to burden his tired brain and delicate demeanour with these new confusing sounds, however conservative the initial map was, we decided to leave the new processor off until the following morning.
The rest of the weekend has passed off without any further problems. We don't anticipate any dramatic changes with the second implant, at least not yet, and it is always going to be difficult to aportion responsibility to the bilateral state while Tom is on such a steep development curve anyway. He is, according to assessments carried out at AV UK and by local Teachers of the Deaf, already within the normal range for speech and language understanding for his age. The benefits are going to be seen over the coming years and particularly when nursery begins in just under a year.
The most significant thing so far though is that Tom can now here the alarm beep that sounds when the headpiece falls off and he seems far more aware of both of the implants now, having explored them much more with his hands. This familiarity is going to be increasingly important as he returns to childcare part-time and may well have to help out his childminder in the coming months.
Thursday, October 12, 2006
A Very Modern Arrangement
The latest chapter of Tom's cyborg transformation story proved to have the requisite touching moments at its conclusion. We had to get through the farce, misunderstandings and byzantine regulations that now govern his care first of course but, ultimately, the people who care did what they do and Tom took it all in his stride.
Tom's treatment is now quite the public-private partnership with a neat line being drawn between what is our responsibility (all things left) and what belongs to the Crown (to the right). One of the manifestations of this is that when the processor that we paid for a couple of weeks ago doesn't show up on the expected day we go without. The Implant team's hands are tied; they can't lend us any equipment for the left ear so we must wait until our parcel arrives tomorrow.
Its a learning process for us all; we are Nottingham's first private implant and they are bending over backwards to get procedures in place and provide us with the care we have asked for and are now paying for (did I mention there are other children with bilaterals who aren't? Oh, I probably did. Ho hum) within the rules that the Trust lay down. The audiologists are on their time; the room and equipment must be hired - an arrangement which, luckily, includes the all-important cars, dancing monkey and elephant.
All of this matters not a jot to Tom of course. The change in audiologist unsettled his deeply conservative outlook for a brief time - no Kim or Mark? What about the micromachines? - but not for long. From the moment the first sound-intimating frequency passed down that wire into Tom's cochlea and we saw him react, we knew the whole rigmarole was worth it. A huge grin broke across his face as he cupped his hand to his ear, looked to us and then looked for the monkey with the crashing symbols. I, in turn, look to Nicky and see a broad smile with eyes welling up and I know she can see the same.
The rest of the session passes. Tom loves mapping and that is in no small part to the skill of the audiologists at Nottingham and their huge stash of cars and garages. This one went without a hitch too - apart from coming away without a processor that is. Now though is not the time to make a fuss; with his existing implant performing so well we can wait another day.
This is but the start of our very NuLabour public-private partnership; it has yet to be worked out whether sessions will be divided into 'the NHS bit' and the 'private bit' or whether there'll be even more appointments. We still have issues of insurance to deal with; spare parts, upgrades and all the other 'what-ifs' that we no longer assume won't happen to us. But today it can wait; today has been another good, good day.
Tom and I had our usual evening routine although he's doing his best to spin it out. Every evening we have bathtime. I'm so grateful that he loves it - its my daily reminder of his deafness and he sees me through this vulnerable time with screams of joy and cups of water over my head.
As I keep saying; he's going to be just fine.
Tom's treatment is now quite the public-private partnership with a neat line being drawn between what is our responsibility (all things left) and what belongs to the Crown (to the right). One of the manifestations of this is that when the processor that we paid for a couple of weeks ago doesn't show up on the expected day we go without. The Implant team's hands are tied; they can't lend us any equipment for the left ear so we must wait until our parcel arrives tomorrow.
Its a learning process for us all; we are Nottingham's first private implant and they are bending over backwards to get procedures in place and provide us with the care we have asked for and are now paying for (did I mention there are other children with bilaterals who aren't? Oh, I probably did. Ho hum) within the rules that the Trust lay down. The audiologists are on their time; the room and equipment must be hired - an arrangement which, luckily, includes the all-important cars, dancing monkey and elephant.
All of this matters not a jot to Tom of course. The change in audiologist unsettled his deeply conservative outlook for a brief time - no Kim or Mark? What about the micromachines? - but not for long. From the moment the first sound-intimating frequency passed down that wire into Tom's cochlea and we saw him react, we knew the whole rigmarole was worth it. A huge grin broke across his face as he cupped his hand to his ear, looked to us and then looked for the monkey with the crashing symbols. I, in turn, look to Nicky and see a broad smile with eyes welling up and I know she can see the same.
The rest of the session passes. Tom loves mapping and that is in no small part to the skill of the audiologists at Nottingham and their huge stash of cars and garages. This one went without a hitch too - apart from coming away without a processor that is. Now though is not the time to make a fuss; with his existing implant performing so well we can wait another day.
This is but the start of our very NuLabour public-private partnership; it has yet to be worked out whether sessions will be divided into 'the NHS bit' and the 'private bit' or whether there'll be even more appointments. We still have issues of insurance to deal with; spare parts, upgrades and all the other 'what-ifs' that we no longer assume won't happen to us. But today it can wait; today has been another good, good day.
Tom and I had our usual evening routine although he's doing his best to spin it out. Every evening we have bathtime. I'm so grateful that he loves it - its my daily reminder of his deafness and he sees me through this vulnerable time with screams of joy and cups of water over my head.
As I keep saying; he's going to be just fine.
Tuesday, October 10, 2006
This Implant was brought to you by...
In the midst of all the anguish, tension and distress of the past few months we have been propped up by a wonderful circle of family and friends, some of whom drop by this blog occasionally. The love and kindness shown to Tom, Nik and I has touched us deeply and I hope we have gone some way towards showing how grateful we continue to be.
The generosity was not just of the 'spirit' variety. As it became evident that the national purse had its limitations (before, in fact), donations began to make their way to us, quickly removing any financial obstacle to the second implant. This has left us staggered - we never asked and yet you gave.
Although we have endeavoured to thank as many of you as would let us, we feel the need to let the world know and be reassured that human beings like to love and help each other given half a chance. So, the following all have shares in Tom's left ear and have nagging rights should he EVER fail to pay attention in school.
The generosity was not just of the 'spirit' variety. As it became evident that the national purse had its limitations (before, in fact), donations began to make their way to us, quickly removing any financial obstacle to the second implant. This has left us staggered - we never asked and yet you gave.
Although we have endeavoured to thank as many of you as would let us, we feel the need to let the world know and be reassured that human beings like to love and help each other given half a chance. So, the following all have shares in Tom's left ear and have nagging rights should he EVER fail to pay attention in school.
- Becky and all the tinytalk groups around the country who took part in the quiz.
- Those who saw East Midlands Today (Anne and Terry) and were touched by Tom's innate cuteness.
- Heidi and Zak and the guests at their wedding who took the option of not enlarging the couple's stock of china. You are such splendid, splendid people and it was a splendid, splendid wedding to boot - Tom was at his charming best throughout, even when telling everyone in the church to 'shussshh the baby's sleeping!!' at the top of his voice.
- Extended family members - aunts, uncles and cousins at various stages of removal - and close family friends who have been generous to a degree that leaves me floored.
- All Tom's grandparents and great grandparents - you are all too lovely for words. Your level of generosity has earned you all the right to be entertained by Tom throughout the school holidays and we will fix up a rota to ensure none of you miss out on your allotted weeks.
- The Vestry Convenor and congregation at St. Ninian's Church in Castle Douglas who gave the proceeds of the church's 15oth anniversary concert and to Balliol Consort who sang so beautifully I'm told (and kindly waived their fee).
There's an even longer list of neighbours, friends, relatives of friends and strangers who, in various ways, have given of themselves for Tom. So...Doreen and Patrick, with your constant supply of sweets, you're not helping us get Tom to eat his tea!
Thank you.
Monday, October 09, 2006
Switch On Part Two
We've just received notification - Tom's second implant is due for switch on this Thursday and Friday, the 12th and 13th (two short spells spread over two days - it's a sensible paediatric thing).
Tomorrow is an important day too - Jennifer over at Happy at Home has her switch on. We'll be thinking of her and hoping that the leaves don't rustle uncomfortably (its a Michael Chorost thing).
A belated mention is also due to another blog friend - Ivan with Hear Again - who is describing his discoveries so eloquently; the voices of his family, music.
We live in incredible times.
Tomorrow is an important day too - Jennifer over at Happy at Home has her switch on. We'll be thinking of her and hoping that the leaves don't rustle uncomfortably (its a Michael Chorost thing).
A belated mention is also due to another blog friend - Ivan with Hear Again - who is describing his discoveries so eloquently; the voices of his family, music.
We live in incredible times.
Wednesday, October 04, 2006
The State of the State
I haven't touched on it for a while - and haven't thought about it much either - but our appeal against the PCT's decision is making its slow progress through the system. It now lies with the Healthcare Commission; another large faceless bureaucracy from whom I anticipate a few pleasantries and at least one sentence beginning with the words 'I regret to...'.
The Commission cannot promise rapid action; investigations take time and they have already exceeded their target of 20 working days to complete the initial review by some margin (they received our form some time mid-August). I received an email yesterday which suggested its going to be at least another couple of weeks before we hear anything. The decision to push on and get Tom implanted is fairly well vindicated don't you think?
Largely speaking, I'm fairly calm when thinking about such matters these days. There are occasions when the inadequacies and failings of the system pierce my bubble of zen-like peace but thankfully, for the sake of my sanity, they are relatively infrequent now.
I had a moment yesterday when the Department of Work and Pensions decided Tom didn't qualify for a Disability Living Allowance. More precisely (I suspect) we didn't use the appropriate trigger words in the impressively long application form that would have convinced them of his needs.
So there's another appeal process to start. I had no idea how much paperwork and hassle was involved in trying to get the appropriate care and making claims. Is it this way to put off the chancers and the scroungers? Surely they're the only ones with the stamina to see it through.
The Commission cannot promise rapid action; investigations take time and they have already exceeded their target of 20 working days to complete the initial review by some margin (they received our form some time mid-August). I received an email yesterday which suggested its going to be at least another couple of weeks before we hear anything. The decision to push on and get Tom implanted is fairly well vindicated don't you think?
Largely speaking, I'm fairly calm when thinking about such matters these days. There are occasions when the inadequacies and failings of the system pierce my bubble of zen-like peace but thankfully, for the sake of my sanity, they are relatively infrequent now.
I had a moment yesterday when the Department of Work and Pensions decided Tom didn't qualify for a Disability Living Allowance. More precisely (I suspect) we didn't use the appropriate trigger words in the impressively long application form that would have convinced them of his needs.
So there's another appeal process to start. I had no idea how much paperwork and hassle was involved in trying to get the appropriate care and making claims. Is it this way to put off the chancers and the scroungers? Surely they're the only ones with the stamina to see it through.
'Hello Twelve!'
For a few months now I've been counting the stairs as Tom and I climb them. Initially he would have nothing to do with the number four but has finally accepted that its deserving of a place (usually just after three but that's not a given).
Tom appears to be developing a semblance of understanding and seems to follow that there is 'one' and 'more than one', the latter described as 'one-two-three'. As far as the stairs go though, although he happily repeats the numbers as we climb and even says the next in the sequence, I know his grasp of their meaning is not quite there when he cheerfully greets the top step - 'Hello Twelve!'
Tom appears to be developing a semblance of understanding and seems to follow that there is 'one' and 'more than one', the latter described as 'one-two-three'. As far as the stairs go though, although he happily repeats the numbers as we climb and even says the next in the sequence, I know his grasp of their meaning is not quite there when he cheerfully greets the top step - 'Hello Twelve!'
Thursday, September 28, 2006
What Next?
The moment the Eminent Surgeon came into the ward and told us that Tom's second implant operation had gone to plan has entered the list of 'critical moments' that have accumulated over the past five months. Almost immediately, the painfully tight, knotted muscles across my neck and shoulders that have been the main physical manifestation of my stress began to ease.
The second implant had come to mean so much to Nik and I in our striving to secure the best possible treatment for Tom. Along with caring for our son, the language therapy and the business of earning enough money to keep a roof over our heads, little else has occupied our thoughts for the longest time. Now it doesn't so what happens next?
Well, in descending order of importance:
Tom is recovering well from the operation. The swelling is slightly further back on his head than last time and so there has been far less distortion to his face.
Tom's vocabulary continues to grow at a tremendous rate and he's made that leap into talking about past events; more specifically, going for rides on Thomas the Tank Engine and a bus last Sunday.
'Tom-Tom in Thomas!', 'Diesel', 'Tom-Tom sat down in the bus!'.
Nik's extended leave from work is coming under closer scrutiny and the pressure to return soon, at least to some extent, is building. This has forced us to confront a number of issues that had seemed far enough in the future as to be safely ignored; namely, how much money do we need to live, where will said money come from and how will work be fitted around the seemingly endless appointments?
Add to that the age-old (well, last twenty years or so) dilemma about how prepared we are to let some of Tom's care be in someone else's hands now? The normal, protective feelings have been heightened at the exact time when Tom needs to mix more with his peers and begin to develop those all-important social interactions. Will the childminder talk to Tom as much as we do and in the right way (therapy does that to you!)?
Reading these last two paragraphs back elicits a wry smile - all the issues are the exact same ones we and all parents deal with from the moment junior first appears. We may have a few more appointments than the average and Tom's needs language-wise are more acute than they were but some semblance of normality has descended.
The second implant had come to mean so much to Nik and I in our striving to secure the best possible treatment for Tom. Along with caring for our son, the language therapy and the business of earning enough money to keep a roof over our heads, little else has occupied our thoughts for the longest time. Now it doesn't so what happens next?
Well, in descending order of importance:
Tom is recovering well from the operation. The swelling is slightly further back on his head than last time and so there has been far less distortion to his face.
Tom's vocabulary continues to grow at a tremendous rate and he's made that leap into talking about past events; more specifically, going for rides on Thomas the Tank Engine and a bus last Sunday.
'Tom-Tom in Thomas!', 'Diesel', 'Tom-Tom sat down in the bus!'.
Nik's extended leave from work is coming under closer scrutiny and the pressure to return soon, at least to some extent, is building. This has forced us to confront a number of issues that had seemed far enough in the future as to be safely ignored; namely, how much money do we need to live, where will said money come from and how will work be fitted around the seemingly endless appointments?
Add to that the age-old (well, last twenty years or so) dilemma about how prepared we are to let some of Tom's care be in someone else's hands now? The normal, protective feelings have been heightened at the exact time when Tom needs to mix more with his peers and begin to develop those all-important social interactions. Will the childminder talk to Tom as much as we do and in the right way (therapy does that to you!)?
Reading these last two paragraphs back elicits a wry smile - all the issues are the exact same ones we and all parents deal with from the moment junior first appears. We may have a few more appointments than the average and Tom's needs language-wise are more acute than they were but some semblance of normality has descended.
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