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.

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.

Careless talk...

We were discussing Tom's love of lazing around on weekend mornings. Nik and Tom had made it downstairs by about 10. I had been up a little while longer, indulging my passion for masochistic labour by laying floor tiles in the kitchen. We were in agreement that such tendencies on the part of our son were only to be encouraged, untouched as he is by the guilt that seems to afflict me whenever I attempt to laze around.

I made some jokey reference to my Calvinistic attitudes and, somewhere a few feet behind me, a little voice piped up -

"Daddy say 'Hey protestant boy - get up!'"

quickly correcting himself

'Shrek say 'Hey protestant boy - get up!'"

That boy is going to get me into trouble one day.

As I write it has just turned eight on Monday morning. I've been at my desk nearly half an hour (not working, I grant you but the intention is there.) There's no sound from Tom's room. This is usual. Parents of young children, are you feeling the envy?

'When its my birthday I be three!'

This has been Tom's stock answer to the question 'how old are you?' for the past couple of months. Its also been his stock answer for a number of other questions too though, including 'What's your last name?' and 'Where are we going tomorrow?'... He knows that he has been told the appropriate response to a number of things - its just that sometimes people ask the wrong question.

He seems to have nailed the concept now. It has been birthday season for Nik's ante-natal class for a few weeks now and with each party the understanding that soon it will be his special day has grown. We went and confused matters by having a 'Hey, look how great Tom is' party last weekend. We made the foolish assumption that friends and family would understand that this wasn't a birthday party. Just because it was within 10 days of the actual birthday, had a party clown and a cake and people leapt to their own conclusions...

So now Tom knows his birthday is impending. He's nailed the fact that today he is two, 'tomorrow I be three', 'I will blow out the candles' and 'open the tellytubby present'.

Excitement levels are high.

'Here you go'

I thought I'd record a couple of language anecdotes before I forget them. They're not poignant or immensely significant - they're just typical of where Tom is at.

Curled up in Tom's 'Racing Car Bed!' (it is always pronounced with an exclamation mark) this evening, Tom and I read perennial favourite 'The Three Little Pigs'. The first pig had just met the little girl and, spotting him for the mug he was, she'd sold him a load of straw. I read the next line -

''I will make a house of straw' said the first little pig'

and Tom dived in with the next ...

'So he did just that!'

Hardly remarkable I know. Tom is so familiar with the story - I do the whole pausing for him to finish the line thing and getting him to describe the pictures so he can pretty much tell it himself. What struck me though was that this was just a throw away line that I've never emphasised - it just links the interesting bits together but Tom has absorbed it without being 'taught' and knows its right place.

This morning Tom was sat on the bottom step and I was putting his shoes on him (pretty much the only piece of clothing he will deign to let a grown up put on him without a fight) and Tom went into a little monologue as is his wont -

'Lady put the shoes on Tom'
'Lady said 'Here you go Tom''
'Daddy said 'Thank you lady''

And so Tom recited his account of the purchase of his latest pair of shoes - an event that took place weeks ago. This made me chuckle for all the reasons it does any parent: he picks the oddest things to remember and natter on about, he uses a phrase that we must use a lot ('Here you go') and applies it to a memory in an appropriate way but where it wasn't used originally,

...and he's learnt some manners somewhere along the line too.

Progress continues - we've got the scores to prove it!

So it's over seven months now since Tom's first implant was switched on and six months since his language was first assessed using the 'Preschool Language Scales-3' (the UK version - the link points to an explanation of the US original).

The idea is that a child's understanding and use of spoken language is evaluated and then compared to a scale derived from a large sample of children aged from birth to just under seven with typical hearing. The results produced give an 'age equivalent' score, comparing Tom to the sample group, for both Auditory Comprehension (does he understand what has been said to him) and Expressive Communication (the quality of the language he uses).

So... how's he doing? Well he's scoring right in the average range for children of his age with typical hearing (and you'll understand why I emphasise that a second time). His 'Age Equivalence Score' puts him at 2 years 7 months; he's actually 2 years 6 months - our boy's ahead! (all dependent on standard deviations and confidence limits of course - I did listen in Stats class).

Proud? You bet. I'm not going to tire of expressing just how marvellous these implants are and what they have done for Tom's life. Charles Arthur, tacking a similar course at more or less the same speed, would hasten to agree. In his latest entry he talks about baby3's remarkable progress with his Advanced Bionics implant after being born profoundly deaf. Interestingly, he's also ruminating on the pursuit of bilaterals - a pathway fraught with no small amount of tension but, ultimately, great rewards.

Its impossible to compare the progress of kids with implants against each other in any meaningful way; different start points, different aetiologies and so many different language experiences post-operatively. This is, of course, why it is tricky to quantify the benefits of bilateral implantation for any given individual - there are just too many factors having an impact on language development - and why any attempt to measure what added benefits Tom's second implant have had over the first is on shaky scientific ground. We're confident it has but the counter-argument goes, he was 'lucky' enough to have had hearing for 20 months before meningitis and was implanted very shortly afterwards. What portion of his success is due to these factors rather than the second implant?

There is no meaningful way of comparing the period with one implant with the bilateral state, not at the age he is. We just see the benefits every day - the way he picks up language almost incidentally, his ever-improving localisation - the 'normalisation' that has occurred. All the considered arguments that appear in scientific publications (and that I described during a bit of a week last July) are being borne out. But then, we had to pay to find that out.

Which is where the PCTs, with their ever-present cash shortages and demands to save money, come in. I wonder which way yours will jump should you ask them, Charles?

Garry Tractor

Yesterday evening I stood Tom on the front windowsill to watch Mummy drive away.

'Mummy won't be long. She's going to see the chiropractor' I said, by way of explanation.

Pause. Thoughtful gaze out of the window.

'There's a bus!!' Tom shrieked excitedly.

More thoughtful pausing.

'Mummy gone to see Garry Tractor. In the field!'

The obsession with all things vehicular runs deep. I love the fact that he doesn't question why Mummy would be going to a field at 6pm to see a tractor. That's what he would do if we'd only let him out of the darned house!

You know its working when...

We've been experiencing an avalanche of verbal dexterity from Tom this past few weeks - all of it the sort of stuff that kids who are two-and-a-bit do and their parents think is the cutest ever (because it is) - and all of it music to our ears.

Tom is our only child - our first go at this parenting lark so I often wonder whether we would be as agog, as obsessed anyway but, with the importance of his language development being so sharply focused in our minds because of his deafness, every little step feels like a major landmark to be celebrated. So here are a few anecdotes recorded for posterity.

I've got into the habit of asking Tom what he's been up to at the childminder's. Last week he told me very clearly:

'Tom-Tom walking holding Karen's hand. Louisa-May in the buggy'.

How much information is that? Not much of a thrilling narrative I grant you but it stuck in his mind and was the most important thing to tell me when I asked. I checked with Karen; it was all true.

Tom doesn't always stick to the literal however, and that makes following the thread of his conversation a little more challenging. Last week, completely unprompted, he named his hands 'Harry' and 'Trevor' after his two favourite cuddly toys. It wasn't a one off either; Harry and Trevor have made subsequent appearances at mealtimes, helping Tom with his fork and spoon as necessary. They even have to have chairs pulled up for them - which makes me think they're evolving into fully fledged imaginary friends. I'll keep you posted about their movements.

One of the pieces of advice from AV Therapy that has stayed with me relates to the importance of staying in Tom's 'head space' - as a parent you can usually tell from context what your toddler is thinking about and, therefore, likely to be saying (hence why parents understand their offspring when everyone else thinks its nonsense). With Tom its getting less straightforward. Admittedly 90% of the time it's trains, cars and/or 'airplanes' but that other 10% can take us shooting off anywhere.

The night before last, for example. We were reading a Bob the Builder book at bed time. Bob was chatting to his completely platonic friend, assistant and project manager Wendy across a double page spread. Tom started to turn the page and it creased in a little overlapping the facing pages,

'Bob and Wendy kissing' and he burst into a fit of giggles.... and repeated the fold over and over, as we both giggled merrily to ourselves. I think all the time he spends around little girls at the childminder's might have something to do with that one.

The list goes on...suffice it to say we're as proud and as obsessed with everything our child says and, maybe by writing it here I won't feel the need to tell absolutely everyone I meet.

Catching Up

I have been remiss of late so far as updates here are concerned; it's not as if nothing has happened - quite the reverse which is why there's not enough time left over for blogging.

Firstly - Tom

Although it is regarded as almost scandalous to say it in certain circles we often 'forget' Tom is deaf. The bright blue coils stuck to the sides of his head are still there (complete with a picture of a tiger on one and a monkey on the other) of course so when I say 'forget' what I mean is that we don't have to make any special considerations when we are talking to him. He repeats pretty much everything that is said, to him or otherwise, and his understanding is impressive and subjective. With his potty-mouthed uncle staying with us at the moment, that makes for some risque situations but, luckily, Tom hasn't cussed at the vicar just yet. He's at the age where he often chooses to ignore what is said to him because it isn't in line with his desires - the fact is that most of our daily challenges are based on him being two rather than being deaf.

And that is a very cool place to be.

Sure, if we look objectively at the pattern of our lives now, there are plenty of 'new' elements that make things less straightforward; from simple things like ensuring batteries are charged, processors are tested and coils staying on all the way to the scheduling of appointments and working with professionals. But, just like everything, you get used to your new reality and, hey, raising a kid brings with it all manner of new skills and situations; by thinking about our situation as just an extension of that it becomes much more managable 'head-wise'.

Claims and forms and appeals and stuff

The good news is that the DWP came through with the Disability Living Allowance for Tom after an appeal which included contributions from the National Deaf Children's Society, (one of) our Teachers of the Deaf and a particularly passionate plea written by Nik which managed to stay just the right side of vitriolic while making it plain that we didn't appreciate being made to jump through all these ridiculous hoops while others, in the exact same situation, received payment after the first application.

There are very good reasons why the DLA isn't handed out without consideration and a certain level of proof but the inconsistency which seems to dog all our dealings with public services can get a little wearing.

As for the greater issue of the ongoing costs of Tom's left implant: we have yet to hear from the Healthcare Commission, who are conducting a review of the PCT's decision. When I say 'conducting a review' I mean ' leaving in a pile of other appeals until their overstretched staff can get to it'. Probably.

Since the first appeal Rushcliffe PCT have disappeared; merged with five others to form some super Nottinghamshire Teaching PCT (this is an approximation - it makes for a long letterhead whatever it is). Our GP has kept up the requests and the funding situation is set to be reviewed by some august panel.... so more watching of this space is required.

So...there's a lot of shrieking going on downstairs. Tom's imagination and sense of fun is growing exponentially. He also has an occasionally abstract view of the world - moments ago he decided that a discarded satsuma skin was an umbrella and that it was raining in the dining room so it needed to be on his head. That is what AV Therapy does to you - and it keeps us all marvellously entertained.