No Going Back

When I deliver the Get Steven Home story I’m often asked whether there has been any ongoing trauma as a result of Steven being kept away from home for a year. I tend to downplay my response as the positives of Steven’s life now far outweigh any negatives.

I’ve spent the morning with Steven and realised there is definitely a pre ATU and post ATU difference to how Steven verbalises his anxiety.

Prior to 2010 and as far back as I can remember, Steven had a catalogue of phrases that he would use in moments of anxiety or agitation. I really don’t like the term “meltdown” but the script would come out just prior to the meltdown reaching a crescendo. I learned early on that Steven expected you to repeat back to him what he had just said and then to offer some sort of reassurance that the worry he had wouldn’t actually happen. However, I also learned that whatever you said had little impact on whether the anxiety abated or escalated: that was entirely down to whether Steven could arrest the mounting agitation.

The script was incredibly familiar. “Want Robbie Williams go back to Take That”. “Want John Waterman (his favourite primary school teacher) go back to Grangewood”. “Want Richard Whiteley not be dead and go back to Countdown”. You can see the pattern here. It’s all about a loss or absence that Steven didn’t fully understand and the need for people to be in their expected, rightful place. The other thing was that none of these expressions were directly about Steven: they were about things he wanted to happen but weren’t about things directly happening to him.

For a few years after coming home, the anxiety expression couldn’t have been more direct or clear. We never heard of Messers Williams, Waterman or Whitely again but everything became “Don’t want to go back to M House. Steven Neary’s staying in the Uxbridge/Cowley house forever”. In some respects it was easier to offer reassurance on this matter, although we all know that ultimately we, as family, don’t really have the final say on where Steven lives. And Steven certainly doesn’t. So the script changed and became more Steven focused but the effect on Steven’s anxiety remained the same – only he could manage his own anxiety. It did feel that this anxiety that had existed since childhood had grown another layer that could be classified as trauma. Accidentally dropping a bowl of Frosties would get the immediate terrified reaction. “Not going back to M House?” Is that trauma?

In the last two years, the script has changed again and I think demonstrates how important Steven’s own home is to him. Enough time has now passed for the fear of a return to M House to have become less gripping. These days, the emphasis is different and Steven has a different script for different people. With Alan, he will say “Steven Neary’s not going to the police station?” With Michael, he looks for reassurance about the weekend, “Steven Neary’s doing a new tape on Saturday afternoon with Mark Neary?” With me, the focus is Thursday – “Steven Neary going to watch his dvd when he gets back from swimming on Thursday?” All of them are about seeking reassurance that life in the Cowley house will carry on just as Steven expects and wants. Today, I had to repeat the Thursday line 27 times before I left. Yesterday I only had to say it 3 times. I like Thursdays best – I don’t have to say it at all.

The first thing I noticed on my return to my flat was the DoLS form still sitting on the dining room table. (By the way, I spilled a bit of gravy on it last night. Will that prompt yet another form?) It got me pondering again how the mental capacity assessment discriminates against the very people it’s meant to be safeguarding. Steven is meant to give a cognitive explanation as to why he wants to live in his home. He is expected to demonstrate he can weigh up the pros and cons of his living situation. How he feels about it and what he intuits about it count for nothing at all. Anyone listening to him when he feels anxious can be left in no doubt how important his home is to him but that wouldn’t figure in the DoLS assessment at all. Those rules don’t apply to the rest of the world. I chose my flat because I loved the view of the canal bank from every window. I didn’t give an awful lot of time to weighing up the pros and cons of the survey results. I suspect if I was being assessed for a DoLS and I stated that I wanted to live in my flat because I love watching the barges and the ducks, my capacity might be questioned. For a learning disabled person, there is no doubt. No space for a feeling response but considerable weight given to being able to manage a tenancy.

Most people don’t really live with the fear of their home being taken from them. If you’re learning disabled it’s just another daily fear that you have to learn how to manage.


6 thoughts on “No Going Back”

  1. Ultimately ‘P’ has to be able to make a choice and indicate it in any way he can – be asked simply about where he wants to live, have as much support as he needs to understand the question, be able to have his choice whether others think it’s unwise or not, be in his best interests, be least restrictive – in that order.
    Yes, it is a minefield, as someone will disagree then it’ll go to the CoP, or maybe to the new approved assessor.

  2. What I would dearly love to see is all the professional people that are in your life, especially the ones that are giving you grief, to be made to stand in your shoes for just a week. For the tables to be turned for just a week. To let them know the fear and uncertainty for just a week. To manage the weariness of constantly reassuring Steven for just a week. Mark I do not think they would last a day!

  3. I agree Pauline.

    There is a chasm between us and even the best of workers – even they they cannot close the mutuality humanity gap – can’t experience us as people like them – our sons and daughters – as theirs.

    Can’t feel or see – or be, ours and or their job or in their ‘real’ life. . We have but one life – so full of times of stresses and traumas… ‘ They have a job and real life.

    We are ‘work’ – dropped like a slippery skin – when the office/car door closes. We are now but a chat to hubby/partner about a rewarding or hard day…. at the office.

    This is why little or nothing is read or recorded usefully…about ours and us … little or nothing is carried through to completion…while we wait, picking up the pieces every day – bullied by the same for chasing things …and them, up.

    We are grateful for everything the best people do..and there are really good people. But all suffer to some extent from the chasm between them and us… a different kind people.

    We, every day sort all out…we clear up the mess that the worst workers leave us every day…and when ‘they’ move on to yet another job….we start all over again…from the beginning.

    For them we never even …….were.

    We clean up and we start over..and we wait for the next one, always hoping this time we will have respite….a little life.

    And when the really bad things happen…we just hang on – so that we are not destroyed by it…for we are needed.

    It is up to us…for our sons and daughters have but one life.

    ‘They’ have no idea…………….

    1. This I particularly find interesting:
      “This is why little or nothing is read or recorded usefully…about ours and us … little or nothing is carried through to completion…while we wait, picking up the pieces every day – bullied by the same for chasing things …and them, up.”
      I’d say chase them hard, and don’t let them not read or record usefully.
      We need completion just as they do – and we will get there.
      What you write is sad, because they think they can get away with it, and we must make sure they don’t, because the cost to us is a whole family obliterated.
      There has to be fairness.

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