A Bit Like Shackleton, But Without the Heroics (Or Penguins)

The days go past quickly at this time of year.  Everyone has their eyes firmly glued on Christmas, and in the ever-shortening days there is just time to shuttle backwards and forwards to school or work.  Julie's timetable, which was being gradually extended to meet new challenges all through last half-term has now become static, and she struggles to keep up with her existing challenges.  There have been days when she has lapsed back into the kind of limbo we saw last winter, refusing to go to school even for the limited number of hours she now attends, and skipping her few classes when she does go in.

I am looking for a new word to describe the kind of life families like mine lead during these times.  It is something like persistence or perseverance, but it has to encompass the idea of constantly working against a strong head-wind, taking tiny steps in blind faith that you are going forwards.  It has to evoke that spirit of constant reckless optimism, even in the face of absolutely no supporting evidence, because there is no viable alternative course of action to take. A bit like Shackleton, but without the heroics (or, sadly, the penguins).  Or like gardening if you have a garden like mine.

I have spent some of this week researching options for finding private help for Duncan and his depression.  I realise now that the real problem for me is not so much finding the money (though this is not to be sneezed at) as finding the time!  When you get down to actually organising therapy imminently, you are faced with the urgent problem of getting your child to location x at time y, given the constraints of school, any after-school activities, your own work and the working hours of the therapist.  In my case I also have to solve the conundrum of what to do with Julie during this time as well as she usually needs supervision, and has her own timetable to throw into the mix.  Poor Duncan - there is not much prospect of privacy for him!  But of course I would have found just the same problem had I waited to reach the top of the NHS waiting list; in fact it would be worse, because I would have had no choice at all about where or when to take him for therapy.

Julie's support has been markedly reduced.  Earlier this term I commented on the number of agencies that were supposed to be providing us with outreach support, and the difficulty of getting them to coordinate their efforts.  Now, one of the agencies has abruptly decided to stop supporting Julie without any warning.  In some ways this is a blessing as it was never quite clear just what they thought they were doing, and they tended to get in the way of some of the other services; but they withdrew their support in a typically muddled and painful way.  Last month, at one of our big planning meetings, their representative asked the meeting if was appropriate for them to withdraw; everyone present  - Julie, the family and all the other professionals – considered this carefully, and agreed no, not just yet, now that they had started work with her and she had got to know their staff.  We agreed that we would discuss it again at the next planning meeting, though in retrospect the representative of the agency fell suspiciously quiet at this.  Our collective decision, however, was perfectly clear, so it was a shock to Julie when three days later her support worker announced that it was her last session with them: they were withdrawing anyway. 

Julie took it pretty hard, worried that they suddenly thought she was able to cope. As far as I can tell they think no such thing: the decision does not seem to relate to any assessment of Julie’s abilities whatsoever, and it is possible that they don’t actually have a view on her ability to cope.  Just as they did not do any assessment when they started working with her, to see what they needed to do, they failed to make any assessment at the end to see if they had made any improvements or indeed finished their work with her.  It was their choice to focus on helping her to use public transport – they focused on making a bus trip – but they stopped short without even checking that she could make a bus trip on her own unaided.  Nor did they seem interested when I pointed out that our bus service is about to be withdrawn, making bus travel something of an exotic adventure.  Do they even know or care that she still cannot travel home the mile from school on her own, whether by bus, foot or bike?

Somewhere this agency probably has an allotted period of time to work with each patient that they are not prepared to share with us.  The remaining agencies cannot expand to fill the sudden gap, and so the additional burden of supporting her falls back on me at a moment’s notice.  But at least I no longer have to try and fathom what this particular agency thinks it is doing and get them to talk to the others involved in her care.  I just wish it had occurred to them to prepare her for the change, given that they know how vulnerable she is.