Tuesday, May 29, 2007

Of charities and web friends

We received a parcel this morning from an internet friend called Kristin. We share a hobby, nay mild obsession, over at IgoUgo , a travel community website where we contribute travel journals and photos. It's a bit like Trip advisor or the Lonely Planet website (or the many others out there); ordinary travellers write reviews of places they've been. The difference with IgoUgo, to my mind, is that extended 'articles' are encouraged through financial rewards, competitions, annual awards and the like. It's a cool site and you'll find Kristin there as 'stomps' and me as 'jaybroek'.

That was all a very meandering introduction to the real thrust of this post. If you follow the links and read some of the journals then great but more to the point, I've got to know some great people through IgoUgo, many of whom have been very kind and have sent supportive messages over the past year or so. Kristin has gone some distance further than most. Last weekend she took part in the Three Peaks Challenge, raising money for the meningitis trust, a charity that, not so coincidentally, have been a part of our lives during the past year. We have been the beneficiaries of financial and counselling support from the trust; support that has been a vital part of Tom's and our recovery.

Now I'm pretty certain that Kristin was going to tackle the challenge before she read about Tom but it is wonderful to know that she took on the peaks with our son in her thoughts and those of her fellow walkers. Each person on the climbs carried with them a pebble, engraved with the name of a meningitis survivor and Kristin's carried Tom's name. She also took with her a couple of T-shirts; one for Tom and one for herself. It was the shirt for Tom, now signed by all those involved, that arrived in the post this morning and was the cause of a tear or two.

So there's hope for mankind with the likes of Kristin amongst us - people like her keep on doing special things for people like us, regardless of whether she knows us or not.

Thank you Kristin.

Happiness is a Car-shaped cake

On Saturday my parents came over for a barbeque. They brought a cake for Tom because the old man had seen it and couldn't resist. And because they rarely have to deal with the consequences of the sugar rush that follows.

They don't have to buy Tom's affection through the provision of Lightning McQueen-shaped gifts but clearly figure that there's no harm in shoring up their stock once in a while.

Anyway, I couldn't decide which picture best captured the essence of Tom's excitement so I thought I'd leave it to you and see if it drums up a few comments.

And to pre-empt the anticipated questions; yes that is a knife he's brandishing. Mum and Nanny are just out of shot, ready to head off any manic activity...

The mouth was consumed first, then the headlights and then the wheels. The sponge is something of an after thought; Tom is happiest just working through the icing. That's where the biggest buzz is.

Monday, May 21, 2007

Smile, darn it, smile!

I asked Tom to smile for the camera - it looks like he's forcing himself manually doesn't it? Note the sticker chart on the door in the background - that's Tom's 'pee in the potty' reward system. He's being a smart little cookie and he has just about got it. He has become king of the precautionary pee and, at the slightest internal urge, called for the throne... only to produce a teaspoonful.

Monday, May 14, 2007

Tom can...

We're in the midst of potty training. Lots of positive reinforcement is going Tom's way; cheers and stickers whenever a performance is made (sometimes while silently gagging - we really need to look at what we're feeding him) while a soothing, blame-free 'Oh dear' greets the accidents. This has led to a number of words being added to his vocabulary including the sing-song 'never mind...' that accompanies Nik discovering pants full of poop and 'Tom-tom PUMPED!' (a phrase that fully deserves its resounding triumphalism).

So, while watching my son's gait transform from padded waddle to snake-hipped jaunt. I had one of those disappearing childhood sensationss. I began to ponder on all the things that Tom is nailing at the moment and it filled me with smiles so I had to share.

  • Tom routinely puts his coils back, giving them a reassuring pat when they're in place.
  • He's pretty adept at putting DVDs in the machine and gets frustrated with the endless trailers.
  • He knows that bogeys, burps and pumps are all hilarious but is not quite the judge of 'context' that he might one day be (hopefully).
  • He knows that riding up front is far, far better than being strapped in the back of the car, no matter which way you dress it up.
  • He knows that watching TV in bed in the morning beats getting dressed and hurrying anywhere...
  • At the weekend, while playing in the garden with Joe-from-next-door, there were times when their running gait looked the same. Tom's balance is improving enormously (thanks Deborah).
Nothing reflective to say about all that really - it's just a joy to watch him grow up.

Friday, May 11, 2007

Bike story

The road that we use to take Tom to his childminder's is closed. Due to the freakish nature of the road layout and traffic patterns that you don't notice until such things happen, this turns a five minute 'nip in the car' into a 45 minute journey of log-jammed commuter hell.

The work is scheduled to last 12 weeks.

The preferred option has become cycling. Tom has a chair that can fit on both our bikes with well-designed Scandanavian ease (it even has a Norwegian flag) and he perches up there behind us, bouncing merrily over the poorly surfaced roads that you never quite felt before.

After two weeks the novelty is wearing thin for Tom. In the morning and when picking him up he optimistically inquires 'Going in daddy's car?' and looks mildly crestfallen when the answer is in the negative. Clearly he cares not a jot that our fitness is improving enormously as we cut a dash through the local highways and byways. He's a little fed up of the whole pre-flight rigmarole with the fleecy beanie hat for holding his implant coils in place and the straps of the cycle helmet which mess with his whole personal space thing. He has recently developed some firm opinions about such matters.

The point of this story, other than adding to the wholesome family image I'm trying to build up, is that I talk to Tom while we're cycling along. I say talk; I call over my shoulder and Tom, occasionally, responds. Not to every word - stuff gets lost on the breeze or isn't easily interpreted but he hears some of it. Arms are snapped out sideways when I say 'lets be aeroplanes!' and negotiations about sweets begin when we ride past the corner shop.

Under his fleecy hat and cycle helmet, out of sight of my mouth and with the breeze blowing Tom can hear me. And that's pretty cool.

Friday, May 04, 2007

Conversations about cochlear implants

I’ve been talking to people about cochlear implants this week. No surprise there really, although I am being a little more selective and trying not to instigate such conversations with everyone I speak to. I think it particularly unnerves the guys in the sandwich shop. I am jesting – I have it much more under control than that. I hope, anyway.

Yesterday’s conversation was a telephone interview with a reporter from Trent FM, a local commercial radio station. Well informed on all matters cochlear, Matt the reporter asked some fairly searching questions, my rambling answers to which have been sliced and diced into some semblance of usefulness and was put out on the air in news bulletins during the course of yesterday. I have no real idea how it turned out as I was in meetings in London all day but the nagging suspicion that I sounded like a buffoon lingers. Nik assures me that I didn’t and they even used some excerpts of Tom chatting in these video clips so I’m sorry I missed those.

The questions were fairly wide ranging although the focus – the bits that stand out most prominently in my memory at least – concerned matters of cost, bilateral implantation and PCTs. I have no idea which sentences made the cut but I didn’t envy him the task of trying to make sense of my tortured, multi-clause ramblings.

One thing I did try to include in my answers was the whole issue of habilitation and speech therapy, a topic that was at the forefront of my mind following a visit to AV on Monday. The media coverage of cochlear implants tends to focus on provision and cost; who’s got one and who’s got two; which Primary Care Trusts (PCTs) cough up and which don’t. I’ve been guilty of the same. These are the emotive subjects that have an immediacy people unfamiliar with cochlear implants can grasp and, hopefully, share in our outrage. But getting the implant is far from the end of the story.

Access to long-term, high quality speech and language therapy is of vital importance to the successful use of cochlear implants, particularly for young children. Inside ‘the club’ we understand that but access to it isn’t guaranteed. It’s another area subject to local variation in state provision. It is something that is also hugely dependent on parental involvement and commitment.

We haven’t had much cause to complain in this respect because, for a change, we got lucky. Tom’s Teacher of the Deaf (from the Local Education Authority), Tania Sorenti, is fabulous in every respect. The Meningitis Trust have assisted with the expense of additional therapy via Auditory Verbal UK; a group of people who, I think, should branch out into parenting courses such has been their impact on us as a family. Tom continues to be a happy, fun-loving and largely compliant two year old. While he is clearly blessed with fabulous genes from his mother, I’m certain that the clear messages he gets from us contribute to this. We use spoken language to plan, negotiate and defuse and it’s paying off.

At the weekend we watched while Tom tried out negotiating for himself with the son of some good friends of ours. In an attempt to regain possession of his beloved ‘Lightning McQueen’, Tom found another car lying in the garden, took it over to Patrick and asked him to swap. No attempt to snatch or wrestle the car back, just language. Patrick was having none of it, of course – he too is in thrall to the Power of Pixar – but we were very proud and are now building Tom’s skills further such that he will offer strictly time-limited loan schemes. I fear a future in politics in the offing.

We couldn’t imagine doing any less for Tom. The feeling of utter helplessness that is experienced when your child is beyond your care is something I never wish to feel again. Everything we have done since then has that time, that period in our family’s collective past, as a counterpoint. We are seizing every opportunity to ENable our son, to enrich his life and to make sure his deafness has no detrimental impact. The profound side-effect is that he is become increasingly eloquent.

Rob Rummel-Hudson mentioned ‘Holland’ a post or two ago; a poem that attempts to prepare parents of disabled children for a world of different expectations. He came to a conclusion that I would have to agree with, having myself gained initial comfort from the copy of that poem that is pinned to the wall of PICU in Nottingham’s QMC. Tom wants Italy and he shall have it.

Tuesday, May 01, 2007

A Year to the Day - posted a little late

This pic was taken on the 22nd April; a significant date in our diaries now as it marks the day Tom was admitted to hospital. This year we took the decision to fill the day with about as much fun as it could take which meant 'Sundown Adventureland'!!

What do you mean you've never heard of Sundown? Why, it's only the premier amusement park for the under fives in the whole of the North Nottinghamshire/Lincolnshire border region. Imagine if Walt Disney had been born in Retford with a sight less ambition, less access to prime real estate in the sun and a lacksadaisical attitude to fibre-glass care and you might be getting close. Tom, and many toddlers besides, doesn't care. To coin a phrase borrowed from my eloquent neighbour's description of 'In The Night Garden', Sundown is baby crack.

We had a great time and set ourselves a tradition for future years.