Saturday Mornings

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.

Boy in a Boot (or Trunk)

I always liked sitting in the back of estate cars too.

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.

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.

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.

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.

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:

• 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.

In lieu of a more recent pic (there's been too much snot) here's Tom on a train from a month or so back. It counts as current because he hasn't stopped talking about it yet.

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?

• 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)