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Managing Uncertainty – the Steven Neary Way

September 24, 2013

Steven seems to have moved into a new phase in his thinking around the house move/non move.

You may remember that for the past four months, the council had been promising a move to a tenancy in Steven’s own right by the time our tenancy expired here on 15th August. Steven was all geared up to that, although obviously that was triggering its own form of anxiety. 12 Days before the move, the council pulled the plug and did a deal with my landlady for us to stay on here temporarily until they find somewhere. Since then, nearly six weeks ago, I haven’t heard a word from the council. The sudden change of plan plunged Steven into a terrible three weeks of sleepness nights, sobbing, self harming and desperate pleading for reassurance. I don’t think it’s a coincidence that during those few weeks, he received his ban from Virgin Active – he was struggling to manage his anxiety at the time. An awful catch 22 situation – what were we meant to do? – keep him indoors until the move took place.

In the last week though, something has shifted and Steven seems to have parked his anxiety. The house move has now gone into a category of things that Steven sees as “expected to happen but now look like they won’t happen”. Over the years, Steven has put quite a few things in this box.

Steven has a very theatrical, throwing his arms wide gesture and says: “Steven Neary & Mark Neary moving to the new house in September?” I reply: “Can’t move yet cos the men are still painting the walls”. Steven smiles and sums up: “Can’t live in a house with just bricks. We might scratch our arms on the sharp walls”. And that’s the end of that. He brings it up about four times a day but settles when we go through that “script”.

He’s been doing this sort of thing for years. Every year, Steven asks for an East 17 DVD for Christmas (East 17 have never produced a greatest hits dvd). So, every Christmas morning after the presents have been opened, he throws open his arms and announces: “No East 17 for Christmas. Anthony Mortimer’s getting his piano mended”.

Ironically, one of the other items in his “expected but not happening now” box, moved last week. One of Steven’s favourite people at the Mencap pool is a chap called Jimmy Puddle. Jimmy hasn’t been to the pool for over a year. So, every Friday, we go through the routine: “See Jimmy Puddle at mencap pool today?” And then Steven reassures himself that he won’t see Jimmy Puddle as his friend has a bad back. Out of the blue, last Friday, Jimmy Puddle reappeared at the pool. so Steven has had to make a readjustment to his categorising of Jimmy!

So, for the time being (and that is the key phrase), the uncertainty and anxiety about the house move/non move is contained. On the one hand, it’s not right. Hillingdon’s Autism Strategy must be pretty woeful if they think it’s okay for them to treat a vulnerable client with constantly shifting goalposts, uncertainty and silence.

But on the other hand, if it stops the horrible hitting himself and getting a decent night’s sleep, I’m prepared to go along with it.

It’s only temporary though. Like the reappearance of Jimmy Puddle, some day in the future, I’ve got to start preparing Steven for a move all over again.

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From → Social Care

6 Comments
  1. Helen Hale permalink

    I think Hillingdon Council could learn a thing or two from the staff at Heathrow http://www.bbc.co.uk/news/health-23989422

  2. Helen I totally agree.

    Mark that really touched me. My son (7) autistic goes through these type of scripts which I must repeat back 🙂

  3. sparrow permalink

    Steven sounds very similar to my son. Your quotes made me smile. Relieved for both of you that things have stabilised (know that feeling as well). Hope it stays like that for a while.

  4. Weary Mother permalink

    Ditto

  5. sally permalink

    I was really touched-I love the scripts.I do some with my son when things are not going to plan, and his is starting to panic. “No bus! Perhaps the bus driver is in his pyjamas or his Mum wants him to brush his teeth properly!” No chocolate coins! perhaps Mr Cadbury is fixing his machine”)
    Do get funny looks form the public.

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