The Manager Or Me?
Last year, I wrote a couple of resentful posts called “The Manager”. They held a familiar theme for me – the impact of Personalisation and receiving a Personal Budget on normal family life. I concluded that I was no longer a father. I was now a manager. A role that I have never striven for professionally. But one that I was now lumbered with, just so that Steven can have a decent, fulfilling life.
And then I got on with my new managerial life.
Today, it all came back to me. So, brace yourself for another resentful post.
I got back from my flat about 9.30 this morning, just as Steven was leaving for his water aerobics group. This is usual for a Tuesday morning. It gives me two hours to get and do things that I wouldn’t have the time to do, elsewhere in the week.
I got cracking straightaway on the support workers’ wages. We’ve had a change in the last two weeks, where I’ve had to reduce one of the worker’s hours and spread them out amongst the rest of the team. This has meant new tax and national insurance calculations, which takes me ages, not because I’m innumerate but because I’m fearful of HMRC. I double, triple, quadruple check everything. The wages led on to the October tax return and like the wages, took much longer than normal because of the new figurework. I was at it for two hours. Just in time for Steven’s return.
Then an update from the support workers. There hasn’t been a day gone past since we moved to Steven’s new home without finding out something else that is wrong, broken, not functioning. So, their report today included the dripping pipe from the boiler (the heating and hot water was eventually fixed on Saturday morning after four weeks), the faulty light bulb in the bathroom and most worryingly, the small patch of damp (condensation?) that has appeared at the foot of the wall in Steven’s bedroom. I added all these things to my to-do list. I could literally be spending all day, everyday on the phone to the council about one thing or another at the moment but I don’t have the stamina. I didn’t have the stamina today, so put off the phone call until tomorrow.
Then, (hang about a minute Neary – you can’t do normal family stuff), I spent two hours with Steven getting his cassette ready for tomorrow morning’s disco. And that is it. That is my one and only time spent properly engaging with Steven today.
After that, I had to get cracking on the monthly Personal Budget audit. With the move, I’m two month’s behind and once again, that makes me fearful because I know what the threats are for a late return of the audit.
Once all those jobs had been ticked off, I had an hour free whilst Steven watched The Terrible Tales of Mr Bean. I’m writing a play at the moment. It’s a single voice monologue and the central character is Mary Mint, the mother of a young man who is suddenly whisked off to an ATU when Mary’s unwell father comes to stay. I’m on Scene Three and Ross has now been in the ATU for five months with no sign of a return home. The play will be produced in some form or other. It looks likely that we will use it in the next 7 Days of Action and ones of the mums has already offered to record it as a podcast that we can release one scene per day. More ambitiously, some online friends have been suggesting names of actresses, writers, producers that they know and who might want to get involved. I’d like to devote a concentrated chunk of time to the writing but that is impossible. I did finish off scene three whilst Mr Bean went to the dentist.
This evening, whilst Steven listens to the new three CD boxed set of hits from 1975-79 that I brought him, it’s back to my manager’s hat. I’ve got an email to compose to the social worker about the revised care plan that dropped through the letterbox last week. Once again, these things take forever because you have to scrutinise the language with a microscope for any tripwires that are always there somewhere hiding.
Just as I was bemoaning the impossibility of a learning disabled family having a life without bureaucratic tangles, up popped this wonderful photo from Camino LB – the walk currently being taken by Sara, George & several Justice For LB supporters. This week, some people from My Life My Choice have joined the walk. It’s glorious. No risk assessments. No one page profiles. Just a group of likeminded people having a whale of a time in Spain.
We can live a life.
As long as our sideboards are deep enough to store all the paperwork that needs hiding away whilst we get on and live it.