Enjoy-a-ball

Benjamin's back. Benjamin was being a bit silly because he didn't have a stick but Reuben didn't have one. My friend Felix took this photo.

This is me and my friend Felix after enjoy-a-ball. Felix is funny. He was nudging my head around.

Today we played tennis at enjoy-a-ball.


From Tom

Hideout school

This is the hideout that LEO made on his own and its a superhero hideout and it was made specially for Captain America and we were hoping he would come to kindergarten to use the hideout.

Leo is one of my friends at school.

Jedi star battle

Hello - I'm Tom and this is not my daddy's blog any more. I've taken over! I'm going to try and take a picture every day and put it up here. Daddy does something called blipfoto and I thought I'd like to do it too. They said I couldn't do it until I was 13 which didn't make me very happy so Daddy said i should take over here!

This is my first picture of the day and I thought it was going to go onto blip but I couldn't! I really don't like the people who run the internet!

'En garde'

December 23rd

So Tom is beside himself with excitement as befits any five year old. There are hourly checks on how long it is to Christmas day and sleep is not easily reached no matter how calm the bedtime routine. Given the persistent snow (another couple of inches last night) over Edinburgh turning it into a picture postcard and the presence of grandparents and you might reasonably gather than the seasonal spirit has entered our home.

You shouldn't take the silence to mean nothing is going on of course - quite the opposite. Life is hectic and the boy grows in every way except outwards although I think he intends to work on that over the holidays. Tom's skinniness has been exaggerated by the recent move from Advanced Bionics' bodyworn processors to BTEs. We always felt that the bodyworn really worked for Tom at a young age; only the coil to worry about for Tom and he quickly learnt to manage that. Now, at five, not being able to dress himself is becoming a minor bind (he would happily spend the day in his pyjamas)...

December 27th - after a brief hiatus for a period we call 'Christmas'...

And that's why I don't post so much - get in early to work in the hope of getting this done, the phone rings and bang, its gone.

So...where was I? The BTEs are working out well - Tom can put them on himself and...and this is special...he doesn't need to check on his parents when his early rising grandparents are around to amuse him. And take part in duels. There are lots of duels in our house this year. Christmas 2009 is the season of the Musketeer around these parts.

It has been building up for a few months; Tom and I have been striding around the city with plastic swords in our belts stopping in front of shops and museums for quick 'one for all...' moments but there have been down days when other games and activities could be levered in.

Not so now - not since the costume arrived.

For the week or two prior to Christmas, an improvised musketeer costume sufficed; a wide brimmed summer hat of mine pinned up on one side accompanied by a belt and (highly inferior) Zorro sword. The first item opened on Christmas morning, however, has cast that to history.

We manage to smuggle his pyjamas out from underneath the costume occasionally and replace with clothes but basically, that's Tom now. Or D'Artagnan, as he prefers to be addressed. It has taken over his every thought.

I give you an example - Tom has just sprinted in 'give me your sword - it's much better. Grandpa is the king - I'm going to execute him!'

So his vocabulary is expanding in interesting ways and the boy can spot a Fleur de Lys at 100 paces. Not very Steiner I grant you and we face a few days of intensive deprogramming ahead of his return to school but if you're going to choose an alternative life for yourself, musketeering isn't a bad career for a young man.

So sorry Uncle Dave - the bike sits in the kitchen largely untouched and cousin Jamie (we think?), Tom has barely acknowledged the wonderful knight's costume you sent. Snubbed is a strong word but... its time will come - maybe. Many beautiful gifts wait to be discovered but for now, a £3.99 plastic sword and a flouncy nylon shirt-and-tabard creation hold sway.

Happy happy holidays.

Regards, 'Porthos'.

Another couple of dragons slain

It's not as if there has been an absence of important events either... its just been shoddy blogging I'm afraid.

So, a brief precis of the spring/summer...

While on a ski tow back in April we received a phone call telling us that we'd just got the home of our dreams. That was pretty momentous and not without tension - the Scottish system of closing dates and sealed bids is enough to send anyone to the edge. I could tell you about the flat... but it is so splendid in every way that you'd start to dislike us and we wouldn't want that now would we?

Suffice it to say that I AM NEVER MOVING AGAIN. This is it. For good.

So the spring was taken up with preparation for that and Tom experienced many of the insecurities associated with such events. He seemed to take the move up from Nottingham last year in his stride but this spring Tom suffered a great deal with separation anxiety. School drop off became a trial for all of us but, with great help from his Steiner kindy teacher, he has made his way through it and is now quite the stoic.

The other key developments have been about Tom's physical achievements. Absence of cochlear implants in the pool - alongside the whole separation thing - have made for slow progress with swimming but Nicky has persevered. In weekly lessons, one-on-one with Edinburgh City special needs staff, Tom has developed in confidence to the extent that, by the summer break, he had just started doggy paddling.

As far as I can make out, though, Tom didn't really get it. What was the appeal of getting in a big cold bath for 30 minutes with a stranger you had difficulty communicating with? He never heard all the other children laughing and splashing around; incentives were few and far between. Luckily his desire for a blue slushy remained great enough to get him through to summer.

Then came the family vacation to France and the killer combination of hot weather and friends-with-pools. All Tom needed was a long sunny afternoon with Amelia and a pool full of inflatable toys. The transition from nervous paddler to fish-boy was complete - and greatly enhanced by daily access to another friend's pool for the rest of the holiday.

Good times.

And today another bogeyman was slain. Following the meningitis I developed a fairly lengthy mental list of shit that I feared was lying in wait for Tom. Some of the items on this list were hugely irrational - I had a recurring nightmare that he would never increase in height that hung around for a few months (I suspect a psychologist would have fun with this one; something about being locked in the worst of moments). Others, though, weren't so far fetched and based more firmly in medical possibility.

Tom's balance was pretty messed up after the illness and, while he has made enormous progress, he still can't hop and has a fairly spread gait and flat feet as he compensates for his core instability. I think he has a sense of this and is generally reluctant to test himself in the way most five year old boys might. We nudge away at this as gently as we can and today, given that we are enjoying an atypically sunny Scottish weekend, we raised the possibility of him trying his bicycle without stabilisers in the park across the road. I made all the appropriate assurances about running with him, holding the back of his seat and he deigned to give it a go.

Anyway, you can probably guess the rest. After a couple of runs like this I whispered to Tom -

'I wasn't really holding you - I was just touching the saddle'

'Really? let's do it again'

and as we trundled back to Nicky I let go.

And off he went.

Obviously, now I'm terrified about the canal on the other side of the park...

Hello autumn

Tom has been experimenting with verse.

'Rain, rain go away. And never come back'

or

'Rain, rain go away. And go all the way to Australia'

or, most emphatically

'Rain, rain go away. Come back when I'm dead'

So yes, Edinburgh has been unpleasantly wet this September (and August for that matter - but that's to be expected - its the festival) and Tom is not a great fan of rain to boot. He manages to smile through it eventually...

So the summer has gone, in Scotland at least, school is back in session and it has been over four months since my last post. Tom's fifth birthday has been and gone in the mean time along with a whole raft of 'must write about that' moments that somehow didn't get beyond hasty envelope notes. I will endeavour to do better.

In the meantime, a shot of Tom and I taken on his birthday at Disneyland Paris, a little theme park we stumbled across on our way back through France during our vacation. Not the most 'Steiner' of holiday destinations but I would offer Tom's polite 'what's Disneyland?' question, uttered as we pulled in to the car park, as mitigation.

Assault on The Ben

So they did it - Tom's Grandpa Will organised an assault on the summit of Ben Nevis in aid of the Meningitis Trust and they all made it unscathed. That's snow on the ground you can see but still proudly wearing short sleeved T-shirts emblazoned, if you look carefully, with Tom's grinning face.

So enormous thanks to (from left) Stewart Hamilton, Will Adam, John Kerr, Ken Gouge and Aubrey Harris. The guys raised over £3,200 which is one heck of a feat!

We're proud of you guys.

Ski video...

This is definitely one for the grandparents - its a slightly long compilation of snippets that we took, mostly when Tom wasn't looking, at the end of his ski lessons. You might be able to detect a hint of pride in the voices on the commentary.

Bear in mind that this is the progress through one week of ski school...


Ski movie - Alpe d'Huez from Jason B on Vimeo.

A couple of things worth reading

I've read a couple of blog posts this morning that seem to summon up my state of mind.

The first is rather bleak - over at the normally upbeat Looky Daddy!

What's the point of drawing your attention to this? Well, because occasionally there is still dark moments when considering what has happened to our beautiful, innocent children. Amidst the frequent celebrations of successes there are still (blessedly infrequent) thoughts that feature the phrase 'why him? why us?'. The cheerful congratulations that accompanied Tom's skiing achievements are tempered, for example, by a fleeting 'this shouldn't be a big deal - this should be normal'. It sucks.

Most of the time I can tell myself that a self-indulgent pity party is not appropriate, particularly after spending a week with a group of families coping brilliantly with the same set of circumstances - or worse. But sometimes the thoughts linger.

I don't think its any coincidence that this has reared its head now - its anniversary time. Three years since Tom contracted meningitis and we wondered whether anything good might happen again.

But of course good things happen all the time.

The second post is by the rarely seen Magic Daddy - father to the wonderful Tom doppelganger Ethan, subject of Ethan's World, and splendidly illustrates the day-to-day, mostly joyful reality of parenting our resilient survivors. Brave, strong kids.

See what a mess of emotions it is?

While I catch you in this delicate state, one of Tom's grandpas is doing something special for The Meningitis Trust this weekend - climbing Ben Nevis with a number of his cronies. He deserves all our support.

Ski bum

Check out Tom the ski bum. Newly qualified Ourson, courtesy of Ecole du Ski Francais and a trip to Alpe d'Huez in the French Alps along with a large group of other implanted kids and their families.

Another day, another opportunity to swell with pride.

I'm at work waaay too early this morning - the cleaners were still here. This led me to miss a rather funny 'Tomism' that Nik has just called to regale.

Tom came wandering out of the lounge with a pair of socks that he'd left on the coffee table last night (he likes to leave his socks in prominent places - a trait he shares with me) and announced that he was going to throw them away.

'Why Tom?'

'Because they're too small'

'Oh, OK well why don't we put them in the wash? Hazel (small granddaughter of a good friend) loves the Night Garden and we can pass them on to her once they're clean can't we?'

'Oh....errrr....' - Tom pondered and then came clean - 'they're really wet. I spilled my juice and cleaned it up with the socks.'

The dietary habits of mermaids

So I got an unexpected opportunity to spend a midweek afternoon with Tom and we decided to go do stuff. Linlithgow Palace - birthplace of Mary, Queen of Scots and medieval castley type ruin - is within 30 minutes drive and I thought it might appeal to Tom's imagination. His play frequently features baddies, chases, ogres and the odd monster so having a good mental image of a castle - with towers and spiral staircases and all - to serve as a backdrop might go down well.

And we loved it - a hearty tour guide's thumbs up for Linlithgow Palace from us. We climbed tall towers and stood in every fireplace we could find. We explored wine cellars, kitchens and galleried halls. Tom didn't stop talking; asking questions and declaring his complicated theories. It took well over an hour for Tom to decide that 'Daddy, if we go in every room we'll be here for years...'

And so we went back to the courtyard for a close, last look at the ostentatious fountain before leaving. Resplendent with stone carved statues and gargoyles, the fountain needed lots of studying. Tom checked out each in turn before coming across a mermaid. He stared at it for a few seconds before deciding 'They live in the sea. They're really nice and people like them and feed them little pieces of banana.'

I defy you to follow that...

Still here - and a little too grown up

'Humpty-dumpty... had a little dumpty...'

'This is Humpty-dumpty number two daddy!'

'Who taught you that Tom?' (chuckling through a mouthful of noodles)...

'Shush daddy... listen!'

'Humpty-dumpty...had a little dumpty...I'm going to go and teach mummy'

There have been so many hilarious anecdotes that I've missed - so many impressive milestones. Tom is thriving in his Steiner school. He and Nik have at least two playdates a week it seems and I hear all about all his pals and... well, suffice it to say, Tom is firmly established in Edinburgh.

And we're content too - except would the **** who stole my bike please return it. City life.

About bloody time...

So - after over two years of deliberation and consultation the guidance is out - and the decision is a great one. All severe and profoundly deaf children in England and Wales are now eligible for bilateral implantation while adults with the same level of deafness are eligible for one (and a second in certain situations).

The legislation doesn't apply here in Scotland though (not unless you're post-meningitic that is) so there is a little more protesting to be done but it is a champagne decision.

Read more at 2ears2hear.

Christmas highlights

So a belated Happy New Year to one and all from one of the internationally renowned New Year party cities... where we stayed home and watched a hilariously poor movie before retiring at a sensible hour.

Highlights from the seasonal period...

When fibs are Good

The morning after the tree went up, Tom woke up shortly after 5am, convinced it was Christmas. Bad enough as this was, we had had a particularly late night that had left us all 'tired and emotional'. Nik resolved to combat a similar occurrence following on Christmas Day. So we got tardy with the advent candle and Tom cheerfully retired on Christmas Eve thinking there were two more sleeps 'til Christmas.

He woke up at 8am on Christmas morning to refreshed and recently caffeinated parents. A win-win example of 'when its ok to bend the truth' surely?

We're all Scottish now

My office is deep in tourist Edinburgh on the Royal Mile. Popping out to the shops for useful things, such as milk or 'something for dinner' is nigh on impossible. Tartan towels, tam-o-shanters and kilts however...

Nik and Tom met me from work on Christmas Eve with the intention of picking up a last minute present or two. Having hit on a good idea that could, remarkably, be obtained from one of the plethora of tourist outlets, we wandered in. Immediately Tom announced 'I would like a kilt!'. Tom is not an unusual 4 year old in that he has a lot of needs and desires which he likes to share with us and, as you might hope, we don't readily succumb. Being an only grandchild on one side of the family coupled with a life-threatening illness makes you the subject of quite enough generosity without parents joining in.

I responded with a rather fuzzy 'I don't think this shop has any your size and, besides, Christmas is coming (no mention of 'tomorrow' note - I was fully with the program by this stage)'. I must learn to be more explicit.

The enterprising shopkeeper overheard, of course, and quickly proved Daddy to be talking nonsense by revealing the range of cut-price children's kilts. Anyway... I challenge you to resist temptation when you know how cute and ripe with comedy potential the result is going to be.

Tom wore his kilt all Christmas day, removing it only to don his much-requested 'supersuit' for about 5 minutes. I think he found it quite liberating.

And yes, there are some stitches to take out so that it hangs properly. We have mothers so we have been told of our gross error.

And finally...

We have a clear case of parent favoritism going on at the moment. Undeserved of course. Tom finds me irresistible and I am his very best friend - to the exclusion of mummy in quite harsh terms. Mummy who does most of the fretting, looking after and day-to-day mundane stuff. It all counts for nothing when party daddy is available.

The cruelest line thus far - 'I love all of daddy, I only love mummy's face.'

You can't trust anyone

Today is the last day of Tom's first Steiner term... he's had a great few months and has become much more outgoing, sociable and independent. He will draw without being press ganged and having crayons sellotaped to his hands too - now there's some step!

Very Steiner moments

Tom's first nativity was on Tuesday morning - a 15 minute burst of circle time with singing and led movement. Tom was a shepherd along with a couple of his wee friends (how Scottish are we becoming). I watched his lips mouth a good few lines of the songs and he was right up with the 'shepherds sleeping', 'shepherds dancing round in circles' and 'shepherds wave their hats in the air like crazy Afghans' moments. 'Precious' doesn't begin to describe it. There were a couple of manful stares at the ceiling to abate the tears, that's for sure.

Not so Steiner

The TV has not quite left Tom's life - greatly reduced and restricted but still popular. His imaginary play is a complex mix of movie plots, friends, Ruddington and Edinburgh and travel in between. To illustrate the pervading nature of TV's influence and how we must be marked at school as 'not quite there with the program yet' -

We were having a chat last night and I told Tom that yes, after he had his tea, we would play with his new city.
'Trust me..' I said
'You can't trust anyone' he replied, as quick as a flash.

After a little investigating we discovered that this is one of Kaa's lines from the Jungle Book - amazing us that he'd taken so much in and reminding us that we really must put a cap on that...

7 sleeps - the tension is building.

That's my boy...

Tom received some visitors this morning - a pair of Speech and language therapists no less. In a splendid example of collaborative working, the therapist from Crosshouse Hospital, Kilmarnock (the solitary Scottish paediatric implant centre) visits at the same time as her colleague from the Edinburgh team.

Why there are two and what they are each focused on is something of a mystery - this is the second time they have visited in the four-or-so months we've been here. They are very keen on assessing Tom and he quite likes the whole assessment process so it all seems mutually agreeable at the moment. They show him these books with four pictures, say some slightly strange statement and he points to a picture. Then all these adults smile at him and pay him even more attention.

Occasionally the adults stop and talk amongst themselves. Tom doesn't approve of this and quickly makes sure all the adults get back on task and get on with this picture game. The picture game is considered A Good Thing.

The pictures are some variant of a test for auditory comprehension - something like TACL I think - and Tom wouldn't let them stop until they'd got to the end. By that stage the questions were asking him to identify where 'neither the elephant nor the boy are standing on one leg' (or something to that effect) and other similarly tortuous, elaborate sentences.

There were a number of occasions towards the end of the test where Tom's finger firmly jabbed at the wrong picture. Before we knew how these tests worked, such failures left us concerned; noting down vocabulary and phrases to try to incorporate into everyday speech.

Then you get to realise that these are tests designed to work across a significant age range and you're supposed to keep going until you fail - that's how you work out the age equivalency.

So how did the wee man do today? Well, he left 'age-appropriate' in the dust and came in equivalent to a typical hearing seven year old.

Not bad for four and deaf really is it?

And this might be partly why the therapists like to stop by. Not much therapisin' needed and lots of just being proud of a smart little boy who knows how to listen.

Oh for the love of...

icing sugar...

Interesting times

So I get to school to drop off Tom. I have with me a note that Nik and I have written the night before, asking for a chat with Dawn, Tom’s teacher, to talk through something Tom has told us about him being upset the day before.

I’m met with a bright inquiry from Dawn –

‘So I hear you’ve got a new cat at home!’

Bemused silence. Nik’s fur allergy ensures such things are highly unlikely. Tom’s description of our new cat had been particularly vivid – to the extent that the tears he’d reported to us had actually been due to his upset at our new kitten being ‘too little to be left at home alone’.

The kitten in question – a slightly ragged towelling toy dating back to Tom’s birth – had become very popular for a day or two (acquiring the name ‘Israel’ along the way) and had clearly morphed into something much more meaningful when I wasn’t looking…

I take it such things are par for the course? Are we edging into imaginary friend territory here?

We’re all OK, by the way. Been a little quiet, I know, but we haven’t dropped off the earth yet… which is because of our stickiness since you ask. This was a recent ‘why?’ question from Tom. He seems to have grasped the earth is round somewhere along the line and shows a somewhat obsessive interest in maps and globes, and our place on them. Out of the blue a few weeks ago he asked why we didn’t fall off the earth.

Now I don’t want to be told this is perfectly normal – I want to remain stunningly impressed by the deduction that there might be an issue with the whole round earth/staying on it thing.

Around the same time as this question was posed the nights started drawing in to before Tom’s bedtime and he developed a dislike of being outside after dark. As we gently explored the reasons for this fear, we got the answer that he was frightened of rockets falling on him. How has he put that thought together?

Interesting times at our place.

A little story I should've shared

So my parents, Gypsy Pete and Diamond Lil, came to Edinburgh for their inaugural visit this past weekend. Tom was keen to show them his Edinburgh - the city of open-top bus tours, Arthur's Seat and his favourite museum - and we all had a great, and exhausting, time.

One evening, over dinner, Nik and I shared an anecdote about Tom and I was (lightly) reprimanded about the story's absence from the blog. Parents are allowed to do that (so long as its 'lightly' of course).

So here is the story.

One Sunday morning Tom and I were preparing to head out to the park.

'Now Tom, I want you to eat your breakfast before we go.'
'But I'm not hungry.'
'I'm not taking a bag with me so there won't be any snacks at the park.'
'I'm not hungry'
'I don't want you saying you're hungry as soon as we get there.'
'I won't...'
'Now are you sure...' - round and round a few times...

So we get to the park...and within five minutes
'Daddy...I'm hungry'
'But I asked you to eat your breakfast... I said that I wouldn't have a snack for you...'
'Daddy can we talk about the childcatcher?'
'But I told you that you had to have your breakfast'
'What do you want to say about the childcatcher?'

Needless to say I had also brought the snacks.