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Nearly Time

December 23, 2017

It’s nearly that time of year again. I’m not talking about annual sprouts and cheesy bollocks day. Unfortunately, I’m talking about the 30th December and the anniversary of Steven being taken away.

It’ll be eight years, a week today and I wish more than anything that I wasn’t still writing about it. But eight years on, the anxiety is still there for Steven. It may not be quite as sharp as it was seven years ago but it’s still making its presence felt, getting in the way of what could be a joyous time of year. At the moment, Steven’s attention (and anxiety) is focused on whether he will get his Edward Scissorhands video on Monday. But he’s already checking and seeking reassurance that life will go on as normal after Johnny Depp has come out of his wrapping paper. It will crank up even more from Tuesday.

We try to speed up time. Each year the Christmas decorations come down earlier and earlier. I will go off on Boxing Day evening, pretending that I’ve got to go to work. But Steven’s not daft and he knows that life is in limbo until January comes along. Or in his marking calendar, until the Loose Women return from their Christmas break. Then he can start to feel safe again.

I can’t imagine it happening again. If I fell ill like I did in 2009, I would go off to my flat to recover and leave the support workers to manage. There would be no question of Steven having to be the person who went away. Ever since the court case there has always been the threat of “a deterioration in behaviour” leading to readmission but I can’t envisage a situation where that might happen and between me and the support team we couldn’t cope. Since 2009, Steven’s coped with three changes of home, the death of his mother and coming off medication and none has warranted the input of in patient services. Probably the worst time for behaviour was when Steven had the liver problem and was in such terrible pain. Imagine if that had led to readmission? His medication (which was causing the problem) would have been increased from day one and he would have been subjected to all manner of restraint techniques that would have added to the pain. Quite possibly, it would have killed him.

But it’s not about what I can or can’t imagine. Steven fears the possibility and that has never really abated. I question whether I unconsciously keep the memories alive. After all, I’m writing this post! I’ve got seven bookings to tell the story at events during January and February. It’s become part of my income stream. Just this week the BASW published an article headed “Five Human Rights Cases That Changed Social Work” and Steven’s story was one of the five. It’s an old story now but the consequences are very much alive.

There is no answer. Sometimes, something happens that affects so deeply that time isn’t the great healer.

Last night Steven was so excited because BBC4 showed their annual Christmas Top of The Pops. We’ve learned that 31 days of awful anxiety are as inevitable as Roy Wood wishing it could be Christmas everyday. In Cowley, we thank heavens that it’s not.

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5 Comments
  1. kate permalink

    Intolerable cruelty and trauma was inflicted on both Steven and you. People don’t just recover. The hate and lying and covering up carried out by supposed pubic servants is hard to endure. Local authorities and senior managers of support providers get away with acts of pure wickedness and the stories never even get heard as ranks close to cover up wrongdoing. That you managed to expose what was done to you and Steven is miraculous and credit to your tenacity and determination to see some justice done! We must never forget such stories and personal suffering or things will only get worse! Seasons greetings to you Mark and Steven, hoping you both get through the madness of it and the change to routines and that Countdown is back soon !! With thanks for all you do to keep us protecting our vulnerable relatives

  2. Pauline Thomas permalink

    Mark I do not know how you have survived all these extremes of anxiety and meltdowns.

    I am new to these. Not that new really just 4 years of them and we have tried all sorts of strategies to stop them, but to no avail. To be told that your son has again hit someone makes me feel so down. How can my once placid son be doing this?

    Can punishment stop them? Does any punishment work? Is there enough reasoning inside the anxiety that you tap into that will get through to them? We have not come across any concrete solutions. and yet punishment is still meted out by some individual staff that are on the receiving end of his right hook. (He cannot use his left arm and he is strapped into a wheelchair which he does not propel himself). I can really understand their anger at being hit, and it leaves me feeling totally wretched.

    My son is so apologetic after the meltdown that I feel that he cannot help the feelings that engulf him at the time. So how can he be punished for them? Any answers Mark? Please let me hear them if you have.

    I am wishing you and Steven and his support staff a calm and smooth Christmas and a even calmer 2018.

    • Your son hitting out might be his only way of communicating. Positive Behaviour Support (which is used in the wrong way usually and rarely understood as being about behaviour of staff as much as the person – we need to see what the behaviour of the person is telling us). It isn’t about punishment.
      I can only speak for my son, but I think any staff meting out punishment to your son need to be punished – that’s not allowed. Yes, you feel sorry, but your son didn’t want to lash out..
      The building up of anxiety and frustration or some inner disturbance in my son leads to occasional outbursts – I think it’s too hard living with staff who don’t really work positively with you. The lack of effort by support workers would drive any one of us mad. The good ones are like gold, but I’m talking about the majority I’ve experienced.
      We wouldn’t tolerate others influencing our daily life, and the staff themselves wouldn’t.
      Pauline, this needs explicit truth to untangle the whole mess. I really understand. I hope this year we move a step closer to meeting wants and dreams.

    • I get worried about punishment as a response to a meltdown. I always see Steven’s meltdowns as an indicator of some intense distress or deep anxiety he is experiencing. In those moments he is so sensory overloaded that he can’t really hear or process anything. Punishment doesn’t feel a suitable response to that. I also don’t think we should take it personally – if Steven lashes out at me during the meltdown, he’s not targeting me. I just happen to be the poor sod in the way at the time.

      • Pauline Thomas permalink

        I agree entirely with you Mark

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