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.

The State of the State

I haven't touched on it for a while - and haven't thought about it much either - but our appeal against the PCT's decision is making its slow progress through the system. It now lies with the Healthcare Commission; another large faceless bureaucracy from whom I anticipate a few pleasantries and at least one sentence beginning with the words 'I regret to...'.

The Commission cannot promise rapid action; investigations take time and they have already exceeded their target of 20 working days to complete the initial review by some margin (they received our form some time mid-August). I received an email yesterday which suggested its going to be at least another couple of weeks before we hear anything. The decision to push on and get Tom implanted is fairly well vindicated don't you think?

Largely speaking, I'm fairly calm when thinking about such matters these days. There are occasions when the inadequacies and failings of the system pierce my bubble of zen-like peace but thankfully, for the sake of my sanity, they are relatively infrequent now.

I had a moment yesterday when the Department of Work and Pensions decided Tom didn't qualify for a Disability Living Allowance. More precisely (I suspect) we didn't use the appropriate trigger words in the impressively long application form that would have convinced them of his needs.

So there's another appeal process to start. I had no idea how much paperwork and hassle was involved in trying to get the appropriate care and making claims. Is it this way to put off the chancers and the scroungers? Surely they're the only ones with the stamina to see it through.