Friday, June 27, 2008

A timely reminder on a Friday evening

The three of us sat down for dinner a couple of hours ago (we still have a table and just enough crockery to perform this daring feat - nigh on everything else is already in Edinburgh). Nik and I were putting a few work issues to rest when Tom piped up.

'Hey - what are you two talking about?'

'We're talking about work sweetie'

'Well stop talking about that!'

'OK - so what do you want to talk about?'

A big smile broke across Tom's face
'I want to talk about cars! - Let's talk about the noise a big engine makes!'

Yay. It's the weekend. Down tools everyone.

Monday, June 23, 2008

Not quite there yet...

This was supposed to be the entry that opened with an excitable, emphatic 'We're in Edinburgh!'... but...

Instead I'm sat at a borrowed picnic table that's serving as a temporary desk, surrounded by empty shelves and wondering just how the English house-buying system ever evolved into this drawn out torture. Like with any of these things, it's the uncertainty that gets to you. Our buying process is currently suffering from information constipation - there seems to be a hold-up a couple of links down the chain that wasn't as close to not being a hold-up as we were led to believe... so plans have got out of sync and, well, we now have the minimalist space we once dreamed of (and there's a little too much echo), a rather limited array of crockery... and I am typing at a picnic table. As you might have guessed, we're a little ahead of ourselves and the majority of our possessions are packed up and gone.

Tom, for the most part, is coping very well with these unsettled times. There's been the odd wobble - the questions about whether he'll still be going to his school and whether Mrs Charlton and Mrs Henson will be there - but for the most part he's finding the process exciting. We were nervous about the whole process. There's a story my parents like to tell about moving house when I was around two - I refused to remove my coat because I wasn't stopping. The length of time that this went on for has, I think, crept up over the years. But we have been sensitive to the little guy's feelings and Nik has done an incredible job of preparing him. We learned very quickly that packing stuff without his knowledge would meet with an adverse reaction and so he has been involved at every step. He helped make the boxes up (and hid in each one), pack some of his toys (his first line one morning was 'I've packed some more of my toys!' after we'd left an open box in his room) and load his push-along car on the van.

The biggest sigh of relief came with the dismantling of the beloved racing car bed. Tom dived in with his screwdriver and, in five minutes, the job was done. He's even loving the whole camping on the floor thing. All we've got to do now is move...

So why Edinburgh? Well, if you're in the UK and follow such things, this might be reason enough but we have a few others too. The company I work for has opened an office in the city (on the Royal Mile no less) and, after four years, I am done with working from home. Nik did her studying in Edinburgh, loves the city and she has family there too. For Nik and I then, the city is perfect but what about the wee man?

First and foremost, there is a pretty solid financial incentive. When we move, Tom's 'private' implant will no longer be our responsibility and will become state funded. I've checked. Twice. Just to make sure. If Tom had had meningitis in Scotland, under current legislation he would have had bilateral implants automatically and we discovered that this level of support applies to incomers too.

So that's good news for him... the sort that leaves a bittersweet taste given the number of children and adults with single implants in this country who don't have this option open to them (and NICE are yet to rule either way - current expected date September 2008 with a 4th appraisal committee meeting on 17th July). We have always counted ourselves fortunate in being able to push ahead with the second implant in spite of the decision made by the PCT and have prepared ourselves financially but this is an enormous relief and provides some stability and assurance. Until the NHS goes belly-up that is.

We've also found a wonderful school a few minutes walk from where we're going to be living. It looks like a fabulous fit for Tom - a little offbeat, small and focused on the individual. It's worthy of its own post but here's a primer on Rudolf Steiner schools. I've just watched one of the dvds posted there and discovered that Tilda Swinton is a Steiner parent. Now I'm not one to get starstruck but she does say the very thing I was going to finish on - the school makes you wish you went there and you can't get a much more positive recommendation than that.

Monday, June 16, 2008

Father's Day

Father's day morning - I got up a few minutes ahead of Tom and was checking email when he emerged from his room.

A split second of confusion - he's not used to either of us beating him to be first up - before he said 'I will go back and get the card in just a second'... (he and Nik had stowed my Father's Day card under his pillow because, obviously, it would be much cuter for him to fetch it out himself and had nothing to do with avoiding being disturbed herself!).

I turned and said 'Go and have a wee-wee'

'I will' came the reply and off he went.

Tom is really comfortable without his 'ears' on first thing in the morning. I think he enjoys the cuddles without the paraphenalia (he uses the Advanced Bionics bodyworn with a single harness holding both processors) and his lipreading is pretty impressive when the context is limited and the routine so well established.

A cute moment to savour.

Saturday, June 14, 2008

Sports Day

I must admit to not being fully prepared for Tom's Nursery Sports Day. It was only a matter of hours before its start that I even considered going but thank goodness I did. I could dress this post up in so many ways and the sports day would serve up the necessary material in spades.

Firstly, and most personally, the hour-long burst of races was a testament to the incredible progress that Tom has made in terms of his balance and mobility since the meningitis. His running stride is elegant and, to my only-slightly-trained-eye, straight and true. For evidence, I submit the following:

These two pictures were taken during the final race which, according to the program, was the 'Let's have a drink in the garden... but watch out for the bees and wasps!! race'. Which leads me neatly on to the second subplot - the event was devised by a comedy genius - or geniuses - who had come up with a series of eight races. Under the theme 'Gardener's World', each race had a subtle twist designed, presumably, to keep the interest of three and four year olds. In keeping with your average Pixar production, this had the possibly inadvertent effect of also making adults howl with laughter.

The first race set the stage perfectly - the 'You need to get a big bag of compost home from Asda' race (US translation: Asda is a proud member of the Walmart family) saw half a dozen earnest kiddies in pushalong cars grinding their way down a 50 yard track with, seemingly full bags of compost strapped to their roofs. Aaah heck, you need to see it...
Note the stockcar style being adopted by some of the drivers - it really needed to be seen to be believed. Little legs sticking out of the bottom of the cars, going ten to the dozen and going nowhere fast.

Every race had a new twist... 'Now collect your plant pots in your wheelbarrow' needs little explanation. Nor does the 'Your plant needs water to help them grow... you will need your watering can' race. Suffice it to say, it kept us all highly amused and utterly refreshed by the lack of guile or competitiveness on show. I lost count of the number of times that the leader, streaking ahead and only yards from the line, stopped and waited for a friend. One little boy, in the 'Time to cut the grass... again... can you mow in a straight line?' race, flew in the face of convention and worked his way across the track in neat strips, turning neatly at each side just as he'd seen his daddy do.

I had time to enjoy that... seeing as Tom had creamed everyone in that race.

Did I say it wasn't competitive?

Please note the 'Tongue of Concentration'.

Given that the week to come is the last for Tom at this school, sports day was a sweet finale to his first school experience. All fears about how he would cope in a mainstream environment have been dispelled. While supported well by the school, he has needed less and less individual or special attention as the term has worn on and will excel in mainstream education.

So thank you James Peacock School, Ruddington. We will miss you.

Wednesday, June 11, 2008

Hello again...

I've thought about posting so often over the last month but events have always moved on and the moment has been lost. There have been holidays and trips that I intended to share...

This one actually dates back to an Easter trip to Grandpa and Savta. Grandpa and Tom were bestest buddies for a week. Grandpa has 'holiday cars' - you can only begin to grasp just how exciting that is.

There has been another trip or two too - hasn't it been a long time? Or are we just having too many holidays?

Tom gave my mum a run out on the beaches of Normandy.

It hasn't all been excitement and play. Well actually, it just about has as far as Tom is concerned but there was one sad day in late April. My somewhat neglected but kind of loved car failed its annual MOT test in dramatic and expensive style. This photo is from the drawn out goodbye ceremony and endless run of 'last plays in daddy's car'.

He has since told everyone about how daddy's car went to the garage and didn't come back. I thought he might pine a little but he shows no outward signs of grief. I think his passion for 'the-car-that-flies' has seen him through. It's not as if the obsession needed any encouragement but Nik's aunt, uncle and cousin did it anyway and took us all to see the stage version which is currently touring the UK. Given Tom's tendency for role play and completion immersion in character, it won't surprise you to know that he went to the theatre dressed as Caractacus Potts.

He has told his teachers once or twice that that's his name.

So that's the story of the last month or so... one of car-obsessed, carbon-footprint creating travel and revelry. Tom has adapted to nursery extremely well and - whisper it - he already seems to be at a place where he doesn't need any additional support. That's not to say it isn't on offer or hovering in the wings but we've had the sort of conversation with educational professionals that starts 'I realise that I don't treat Tom any differently to any other child...' and 'I have never had a deaf child that I've thought could do this well...'.

Things are going well... so its time to shake things up.

We put our house up for sale in the same week that the run on Northern Rock began. Not the finest or most astute piece of timing but, hey, when you've gotta go...

Nine months and several price drops later it has sold and we're now a couple of weeks away from moving. Boxes are piling up, lists have been compiled and plans made. By the end of June we'll be living in Edinburgh and starting a whole new chapter. Tom's needs have been at the forefront of our minds throughout the process and, now I'm back in the blogwriting groove, I'll explain a little more.

Next time.