Tuesday, January 29, 2008

2 ears 2 hear

I made contact with Charles Arthur soon after Tom came out of hospital - his son had a cochlear implant around the same time as Tom and it is great to read about the progress he's making. Charles' wife Jojo Moyes has written a piece for The Daily Mail supplement that is well worth reading - 'How Lockie broke through a wall of silence'. I hope you don't find the paragraph that follows the piece too alarming - I'm not sure about the relevance of the 'downstairs security check'.

On a slightly more self indulgent note, I've been contributing to getting a website off the ground that may be of interest to cochlear implant watchers. Hatched last summer as an attempt to get a few things out in the public domain about bilateral implants in time for the outcome of the NICE evaluation, 2 ears 2 hear has been launched. Written in conjunction with another parent of an implanted child, the website has a number of intentions: to support parents in their efforts to get what is best for their children from their PCTs, raising the profile of the issues surrounding bilateral cochlear implantation and to put some pressure on decision makers in the run up to the final publication of the NICE recommendations.

NICE kind of beat us to it with the publication of their draft recommendations last month but there is still a few months to go before the final report. As I've written before, if these recommendations had been in place when Tom was deafened, he would have qualified under two out of the three published criteria. We believe these recommendations don't go far enough. With them as they stand there is tacit acknowledgment that two implants are better than one but the additional cost of the second operation appears to tip the cost-effectiveness balance along with the gradual decline in likely effectiveness that is associated with failing to stimulate the auditory nerve.

Tomwatch update

Two weeks in and nursery school is still pretty appealing. We have had our first taste of on outcome of parenting a school age child - we only know as much as Tom is prepared to tell us... and that is highly variable. And often seems to deviate from reality.

A recent visit from the physiotherapist confirmed what we were suspecting - Tom is making excellent progress. He is far more stable and physically adept in terms of his gross motor movements (hark at the scientific terms) and becoming gradually more confident with a range of activities. The question I always ask is 'how far can he go?' and, like most of the questions we ask to professionals, it is met with a much qualified, carefully phrased 'don't know'.

What can be said though, and this saddens me however frequently it needs mentioning, is that Tom would be making far less progress if we had taken the NHS approach and accepted well enough.

Tuesday, January 22, 2008

The unfortunate impact of 60s musicals

I mentioned the Chitty Chitty Bang Bang obsession didn't I? It has coincided with Tom's increasingly imaginative and witty approaches to acting out what he sees on DVDs and in books. This evening, the sophisticated routine he has created for the theme song - toy steering wheel on pushalong bike while driving in circles mouthing the lyrics - was preceded by a vibrant, energetic interpretation of Dick van Dyke's finest three minutes. Tom's performance was subtly enhanced by the fact that he performed the number dressed only in his vest, processor harness and Nicky's lilac beret.

Luckily for his future mental stability and dignity I did not have a video camera to hand at the time. It didn't take much to persuade him to perform an encore however...

The Old Bamboo from Jason B on Vimeo.

Friday, January 11, 2008

Weekend Movie Double Header!

Have I got a treat for you this weekend! Treat it as my humble attempt to make amends for the recent paucity of entries.

The first video is a 'little chat' I had with Tom the evening after his first session at nursery. I am competing for his attention with a pack of Snack-a-Jacks ('a sane snack in a mad world!' - no, really) and probably come off second best.

There's this whole discussion that comes up about having his photo taken at school. I think Tom has ignored the question and is making a slightly off the wall suggestion. It turns out he did have his picture taken at school...

Interview about nursery school from Jason B on Vimeo.

The second, and far more interesting, video is where Tom has taken control of the camera. I love his questions to me (is that how I sound? - the teacher from Peanuts sounds positively eloquent in comparison), his focus on his 'car' and his giggles. They get ya every time...

The birth of an auteur from Jason B on Vimeo.

Thursday, January 03, 2008

A brief introduction to Christmas

This is Tom's brief Christmas interview. A few things to note that might help with understanding:
  • We were at Granny's house
  • Annabel had a metre-tall internally lit model Santa in her garden. We went to see it on Christmas Eve and I 'did' Santa's voice while Tom checked that he'd got his order right. I wasn't out of sight of and did nothing to hide my mouth... Tom seemed pretty convinced.
  • Tom got lots of other things as well as the garage and the mini however he'd had to stop unwrapping pretty early in proceedings. He announced he had a tummy ache and went for a quiet story on his uncle's lap. It may have been the excitement. Then again, it might have been the heady cocktail of chocolate and sweets for breakfast.

Tom explains Xmas from Jason B on Vimeo.