Friday, May 04, 2007

Conversations about cochlear implants

I’ve been talking to people about cochlear implants this week. No surprise there really, although I am being a little more selective and trying not to instigate such conversations with everyone I speak to. I think it particularly unnerves the guys in the sandwich shop. I am jesting – I have it much more under control than that. I hope, anyway.

Yesterday’s conversation was a telephone interview with a reporter from Trent FM, a local commercial radio station. Well informed on all matters cochlear, Matt the reporter asked some fairly searching questions, my rambling answers to which have been sliced and diced into some semblance of usefulness and was put out on the air in news bulletins during the course of yesterday. I have no real idea how it turned out as I was in meetings in London all day but the nagging suspicion that I sounded like a buffoon lingers. Nik assures me that I didn’t and they even used some excerpts of Tom chatting in these video clips so I’m sorry I missed those.

The questions were fairly wide ranging although the focus – the bits that stand out most prominently in my memory at least – concerned matters of cost, bilateral implantation and PCTs. I have no idea which sentences made the cut but I didn’t envy him the task of trying to make sense of my tortured, multi-clause ramblings.

One thing I did try to include in my answers was the whole issue of habilitation and speech therapy, a topic that was at the forefront of my mind following a visit to AV on Monday. The media coverage of cochlear implants tends to focus on provision and cost; who’s got one and who’s got two; which Primary Care Trusts (PCTs) cough up and which don’t. I’ve been guilty of the same. These are the emotive subjects that have an immediacy people unfamiliar with cochlear implants can grasp and, hopefully, share in our outrage. But getting the implant is far from the end of the story.

Access to long-term, high quality speech and language therapy is of vital importance to the successful use of cochlear implants, particularly for young children. Inside ‘the club’ we understand that but access to it isn’t guaranteed. It’s another area subject to local variation in state provision. It is something that is also hugely dependent on parental involvement and commitment.

We haven’t had much cause to complain in this respect because, for a change, we got lucky. Tom’s Teacher of the Deaf (from the Local Education Authority), Tania Sorenti, is fabulous in every respect. The Meningitis Trust have assisted with the expense of additional therapy via Auditory Verbal UK; a group of people who, I think, should branch out into parenting courses such has been their impact on us as a family. Tom continues to be a happy, fun-loving and largely compliant two year old. While he is clearly blessed with fabulous genes from his mother, I’m certain that the clear messages he gets from us contribute to this. We use spoken language to plan, negotiate and defuse and it’s paying off.

At the weekend we watched while Tom tried out negotiating for himself with the son of some good friends of ours. In an attempt to regain possession of his beloved ‘Lightning McQueen’, Tom found another car lying in the garden, took it over to Patrick and asked him to swap. No attempt to snatch or wrestle the car back, just language. Patrick was having none of it, of course – he too is in thrall to the Power of Pixar – but we were very proud and are now building Tom’s skills further such that he will offer strictly time-limited loan schemes. I fear a future in politics in the offing.

We couldn’t imagine doing any less for Tom. The feeling of utter helplessness that is experienced when your child is beyond your care is something I never wish to feel again. Everything we have done since then has that time, that period in our family’s collective past, as a counterpoint. We are seizing every opportunity to ENable our son, to enrich his life and to make sure his deafness has no detrimental impact. The profound side-effect is that he is become increasingly eloquent.

Rob Rummel-Hudson mentioned ‘Holland’ a post or two ago; a poem that attempts to prepare parents of disabled children for a world of different expectations. He came to a conclusion that I would have to agree with, having myself gained initial comfort from the copy of that poem that is pinned to the wall of PICU in Nottingham’s QMC. Tom wants Italy and he shall have it.

1 comment:

Drew's Mom said...

I think it is great that you are doing all you can to help educate people on not just the implants themselves, but all of the therapy and work that goes into making good use of the implants. We have the same insurance issues in the states - problems with insurers not wanting to pay for speech therapy, etc. We have found that people really don't know a lot about this field.

I love the Italy part. That's where we are all headed!