Tuesday, June 26, 2007

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.

1 comment:

Anonymous said...

There's an organization in the UK called the Elizibeth Foundation that might be of help, I hope. http://www.elizabeth-foundation.org/