World of Sound

A new UK site championing cochlear implants has appeared.

World of Sound has started life with a featured campaign, that of the 'postcode lottery' that currently exists with regard to funding. The opening lines say you can:

Read about the funding issues surrounding cochlear implants and the different viewpoints of a parent, PCT and professional.

You might recognise the parent who shared his views. It was written sometime last autumn I think - funny how little has moved forward for us on the Healthcare Commission and funding front since then (when I say funny I mean not remotely humorous and actually an ongoing source of frustration).

The site presents an even-handed approach giving the PCTs and implant programmes the opportunity to explain their positions re: funding which they both manage do without any mention of bilaterals or the vast difference between the process (and likelihood of funding) for adults and that for children. Seeing as these are the requests that are most inconsistently dealt with across the country, for me it seems a gaping omission. Will someone new to the world of implants grasp that from what is presented here?

Because of this it made me wonder who the target audience is. If you are in the process of being assessed for implantation then you are immersed in much more detailed information than you will find here. You will only come into contact with your PCT if you are unlucky enough to have your implant programme's request turned down and then, well your business case might well be incredibly professional (as the representative from a PCT recommends) but if your PCT hasn't got the cash...

In fact, the more I ponder the PCT's position as written here the more I despair and I'm trying not to do that as much these days.

So if it isn't for prospective implantees who is the site for? It gave me another place to tell Tom's story which can't be a bad thing but in terms of moving the debate on around postcode lotteries, I'm not sure it succeeds. For those who aren't up to their necks in all things cochlear there needs to be a little more 'back story' to put the viewpoints given in to some perspective and I would like to see an editorial point of view?

Coming down on one side or the other is not as straightforward as it might seem though (he says, answering his own question). While Cochlear (who sponsor the site) appear to have a position on bilateral implantation (they regard it as the 'standard of care') they remain careful not to upset the people who, usually, have to buy their kit or those who have some influence over which device a recipient chooses.

Overall, any attempt to bring the debate to more people is a good thing and, given the complexity and subjectivity of the topic in hand (and the fact that I got to rant with Tom being a user of the Other Brand), I'm prepared to cut the World of Sound a little slack with their position astride the fence. I wait to see how it develops.

I think I've joined a cult...

There were a few occasions on Saturday where I thought we might have accidentally joined a cult.

There were a number of telltale signs. The most telling is that the system in which we believe, in which we trust, is regarded as unorthodox by the ‘authorities’ and, if we do find support and interest from ‘establishment’ figures then it is spoken about in hushed tones. Despite the opposition we might expect, we were encouraged to evangelise about our belief and the way it had helped us even if we met with resistance and hostility.

There were other, more subtle, indicators that completed the picture for me but I’ve always had an imagination that leans to the fanciful. We met in a large Edwardian house on the outskirts of Oxford (perfect cult territory), everyone smiled continually and, most suspiciously, there was a great deal of communal singing. Even our responses; general elation with occasional lapses into tears, fit the cult theory to a tee.

So what were we up to? We were attending the far-from-sinister Auditory Verbal UK Parents’ Conference, held near the organisation’s premises in Bicester. Of course Auditory Verbal (AV) Therapy isn’t actually a cult but, in the UK, it remains a fringe practise. The AV approach to speech and language development with deaf and hard of hearing children is not outrageous; in fact it strikes us as mostly common sense. So why can’t a well proven approach be considered the norm in the USA and elsewhere not be part of the mainstream here in the UK?

We didn’t even hear about it though ‘official’ channels - it was only via the international CICircle discussion forum and exchanges with other parents that we heard about Jacqueline Stokes and her team. The same goes for the John Tracy Clinic in California – an organisation that promotes verbal communication and run an excellent correspondence course.

Too many of our early interactions with ‘official’ therapists and health professionals have left us feeling deflated at a time where one would hope for optimism and talk of Tom’s potential with these new implants. Realism shouldn’t be excluded but the extent to which expectations are lowered is far from helpful. There is little attempt, bar one notable exception, to challenge us as parents to anything like the extent that Jacqueline does. Is this approach borne out of a fear of failure? A knowledge that the state just can’t guarantee the quality of its practitioners or its provision?

It was only at AV that our role in Tom’s development was really challenged in a vigorous and inspiring way. The way of the state is much gentler and easily missed or dismissed. It seems ridiculous to me now, how ‘British’ their approach is and yet, perversely, how understandable (to a British psyche). Weighing up the best interests and life chances of the child against the fear of causing offence? Sorry, we don’t ‘do’ tough love here. You do what you can and we’ll be here occasionally.

As a parent of a very sick child, or one who has just been diagnosed as deaf, you are very raw. Feelings can be hurt easily but, at the same time, you are desperate to wrestle back some control. After all the tests, diagnoses and interventions there is, at last, something you can do and surely there isn’t a single parent in that situation who wouldn’t want to do everything they could? While there may be moments where you don’t feel you can do any more, that is far from being the prevailing sentiment. We don’t deny that our child is broken but we will do everything in our power to minimise the impact on his future. Sod Holland - we want Italy... and Holland (for those Dutch relatives of mine).

We heard numerous therapist horror stories on Saturday from other parents that left us feeling reasonably lucky in our interactions with professionals. Many could be aggregated under the heading of ‘Don’t get your hopes up’ while others talked of being made to feel grateful for any intervention. I don’t know how prevalent such attitudes are but it should be plain what impact they have on parents and families who have just been confronted with the news that their child is deaf.

As I’ve written before we have been incredibly lucky with our Teacher of the Deaf, Tania Sorenti. She was willing, nay excited, to collaborate with us as parents and our choice to use AV UK. She has undoubtedly contributed to Tom’s enormous progress. I only wish, after hearing other parents on Saturday, that there were a few more of her to go round.

It is so important to say this over and over: cochlear implants are astonishing devices but without appropriate intensive therapy from driven, enthused professionals who believe your child can achieve pretty much anything, then there isn’t much point.

An important piece of history

Stumbled across a link to this article in the Australian Herald Sun over at the Deaf Blog (who I wish would stop that video kicking off on loading the home page).

A short excerpt:

Holly McDonell is living proof of the difference science can make. The 24-year-old has just graduated with first class honours in law but two decades ago she was the world's first Cochlear implant recipient.

As she celebrated the 20-year anniversary of the breakthrough Aussie invention with the surgeon who made it possible, Ms McDonell reflected on the implant that transformed her world.

"Without the implant I am completely deaf but with it I can hear just as well as everyone else," she said.

This is a technology that is unlocking doors in such an astonishing way. This is the sort of story that fuels parental ambition and that Tom will spend his teenage years wishing his dad had never seen.

Nagging doubts put to rest

Cochlear implants and music appreciation is an interesting sub-topic and one that has given us some cause for thought. With so much of pre-school and early school years featuring action songs and the learning of rhymes, we feared Tom's hearing would be a significant barrier to participation. In the paranoid parents' brain I foresaw a dispondent son standing on the edge of a circle while all around him his peers Dingle Dangled their Scarecrows and Wound their Bobbins Up.

Michael Chorost, in his article 'My Bionic Quest for Bolero', addresses the issue in an engaging manner without skirting round the science of it. The limitations of the 'channels' of sound offered by implants makes distinguishing between note close together on the scale impossible. There is promise of more with Advanced Bionic's HiRes 120 Strategy .

We aren't quite at that level of need yet. The 16 channels (well, 15 in the left ear) that Tom is getting seem to be more than sufficent for him to get the tune, the all-important actions, most of the lyrics and a huge smile on his face.

As for the other nagging doubt - to explain it I have to admit, in a slightly guilty middle-class parent way, that Tom likes a bit of TV every once in a while but I've always had the impression that Tom wasn't really understanding much of what he heard. The quality of the sound is different to natural voices and there aren't always visual cues to aid understanding so I assumed it was just the bright colours and rapid movement that was holding his slack-jawed attention.

Watching Tom at AV therapy yesterday allayed this fear and much more besides. I watched most of the session with tears in my eyes; I was so moved by what Tom could do. It was such a simple exercise (as is so much of what we learn with the marvel that is Jacqueline Stokes). Jacqueline played an audio story on an old style mono cassette recorder which Tom and she followed with the book proper, stopping frequently to talk about what was heard and how it related to the story.

Tom was utterly inthralled; attentive, excited and hearing everything. He didn't miss a trick and, when the story was finished he wanted to plough on into the next one. The story held his attention for upwards of 20 or 30 minutes and then, with very little encouragement, he proceeded to recreate the story with toys for another half an hour.

Just to make anyone aware who's joining this story at this point (and remind the rest of you); Tom is deaf, relying on cochlear implants... and he's not quite three years old.

He is loving sound - he's also learning words that we haven't taught him (this is where it starts to get dangerous) and experimenting with the language he's learnt. His progress is such that we've scaled down to once every two months with Jacqueline. There's the transition to school to manage but I'm beginning to suspect that Tom won't be the quiet one on the edge of the circle - he'll be the irrepressible one that the teacher needs to shut up.

'Baa Baa Black Sheep, Daddy Shut Your Eyes!'

I thought kids were supposed to grow up when you weren't looking? We've just had a week or two of wholesome family togetherness on holiday (mostly in the Ardeche region of southern France, thanks for asking) where Tom has been constantly with us; spoilt to within an inch of bratdom and in sight continuously. Scrutinised, in fact - his actions dissected and analysed by a panel of judges. Then we come home and Tom returns to his usual routine a changed boy.

Karen, Tom's childminder, has always described him as 'a watcher'. While the other kids at playgroup charge off and throw themselves into activities Tom would hang back, see what they got up to and then quietly select his moment to act. Often this would involve seizing his favourite pedal car or staying close to the grown ups, whiling away his time in blissful solitude. I've always got that about him. I was that kid once.

This week, though, something has changed. Monday found Tom joining in with the dancing and singing at Tumbletots; something he's studiously avoided in the past. He even deigned to join 'the train' - a conga chain that forms to migrate the tots from one activity to the next. In the past Tom has demonstrated some serious 'personal space' issues at the very suggestion that he may allow another child to hold his hips. On Monday, however, off he toddled.

On Wednesday Karen reported that Tom had launched himself into a softplay area - one of those multi-tiered cage things with slides, giant mangles and holes that were designed to humiliate fathers who aren't as flexible or lithe as they once were. This is another first; up 'til now Nik, Karen or I have been dragged into these squishy, claustrophobic hell-zones where four year olds climb the netting and body slam you in the ball pit. I don't think I'll miss that particular pleasure but I do wonder where these things were when I was a kid (Cue extended wistful reminiscences about the golden age of childhood when you played outside, climbed trees, fell in streams etc. etc.).

A confidence has emerged that has caught us by surprise and we love it.

A year ago today we brought Tom home from hospital. Again. That was the beginning of the journey back to sound - his first cochlear implant. He hadn't started walking again and had been out of hospital less than a month but photos of that time show him smiling, playing and blissfully unaffected by the turmoil that we were going through.

How things move on.

This morning Tom sang 'Twinkle, Twinkle' and 'Baa Baa Black Sheep' to me while I pretended to go to sleep in his bed. He has 'Twinkle, Twinkle' down pat while 'Baa, Baa Black Sheep' sounds like a stuck record. He gets jammed on the first line and needs a small vocal nudge to get him off the first line.

This morning it went:

'Baa Baa Black Sheep,
Daddy Shut Your Eyes!,
Have you any wool?
Baa Baa Black Sheep...'

That's my rather long-winded way of saying 'Sorry for the lack of updates - Tom is in astonishing form'

What Tom did next...

This last few weeks Tom has mostly been...


running around the French countryside while bossing his parents and grandparents around...


Trying to unlock chateaux with his grandpa's car keys. Marks for creative thinking are deserved, I think, along with a sigh of relief that he has moved on from trying the handles of parked cars. That was a slightly disturbing (but criminally amusing) habit.
There was time for looking radiant with his mother and reminding me what a lucky man I am to have a family like this...

We caught nothing bar a few small stones but that kind of effort is tiring y'know?

Holidays are splendid things aren't they?