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It Never Abates

December 9, 2014

Steven has two great fears. One has arisen every Christmas since 2010. The other fear is a constant. The first fear is about being taken away from his home “for a long break after Christmas”. The other is about me falling ill. Put the two together and it is a recipe for the most unimaginable stress and anxiety.

Sunday evening, I knew that I was going down with a cold. When I woke up yesterday it was full pelt. Steven is alerted straightaway because “Dad is talking in a different voice”. I tried to describe the word “hoarse” to him once but he got terribly confused that I had swallowed a horse! I left early for my respite evening and curled up on the sofa under a duvet and had an erratic sleep between 6pm and 6am.

Tuesday is a full on day in the Cowley house. When Steven gets back from swimming, we do a compilation tape for his disco tomorrow. He expects me to sing along and repeat back his narrative story to each song. Then we watch a Gladiators video and I am expected to play the part of John Sachs (the commentator), John Anderson (the referee) and Fash (the compere). And to round the day off, Steven runs through the Mr Bean video he watched yesterday, describing in the most minute detail every scene from the show. You can probably imagine that my voice, croaky at the start, had descended into an inaudible rasp five hours later. This leaves Steven beside himself with anxiety. Crying. Hitting himself. Hitting me. Screaming. Throwing anything he can lay his hands on. Needless to say, my verbal reassurances make the anxiety worse as I have no voice.

At times like this, my fury with social services launches like a rocket. They kept him away for a year for “assessment and treatment” and he came home with post traumatic stress. Only I’m not allowed to call it that. As the council’s in house psychologist put it – “He’s not been fighting in a war”. At most, she would acknowledge “a degree of anxiety” but dismissed the idea that the Unit may have played any part in the causation. The council have maintained that position – “we’ve done nothing wrong Guv” since 2010, probably under the advice of their legal department who possibly feared a bigger damages settlement.

Their position completely blocks off seeking external input into the issue though. I don’t think I’d want to seek their help anyway but I couldn’t bear sitting in a room with the speech therapist and the positive behaviour team again as we discuss possible material for a social story to help Steven with his “separation anxiety”. Or they might get the psychiatrist involved, who will inevitably introduce a new cocktail of anti psychotics. Or worse still, God forbid, the positive behaviour team, ever on the lookout for a new specimen, might suggest another period of assessment & treatment.

The PTSD ( for that’s what it is) is there all the time. Day in and day out, Steven (and me and the support workers) find our best way of dealing with it. But when the two major triggers collide, we know it’s a time for hard hats and battened hatches.

Roll on January.

P.S. I just wanted to add that this is a rant post, a get it off my chest post. I’m not looking for advice. Each time I post something like this, I am inundated by the positive behaviour crowd across the country offering their words of wisdom. Not today please chaps.

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From → Social Care

5 Comments
  1. Debra bentley permalink

    Your doing a great job ! 😊

  2. Last New Year’s Eve, my son had an ‘incident’ of challenging behaviour at the Bethlem Hospital where he was detained under section 3 of the MHA. As a result, his s17 home leave for the holiday was cancelled. They just didn’t get that it was anxiety about the leave that had triggered the behaviour and that stopping him going home was only going to make him worse. I pleaded with them, in tears, to change their minds but they wouldn’t. The reason I was given was that they would ‘look bad’ if he came home and had another bout of challenging behaviour.

    Ever since then, every week, three times a week, we have had to play the Big Ben chimes to celebrate moving into the next part of the week. Obviously there is huge anxiety about this New Year, but as he is no longer detained, it won’t matter and he understands that. We have also got a concept of ‘back up plans’ in place so that the stress and disappointment about cancelled events can be mitigated. And we decided that the Ward Manager who wouldn’t let him home last year is a Troublesome Truck and has to spend all her days in a siding.

    I totally sympathise Mark. It beggars belief that people who do not know our children are allowed to make such fundamental decisions about them. Decisions that damage them and cause them huge distress. Decisions that have such an immense fall out for families and carers, and decisions that set us all up to fail.

    Our children thrive in spite of these so-called experts not because of them. That makes our children utterly remarkable and it makes the people who take money to mess them up idiots, plain and simple.

  3. meg permalink

    Good luck Mark. I hope you recover soon enough for you and Steven to enjoy a Merry Christmas

  4. Jayne knight permalink

    Just keep in there and hope you get better soon

  5. Hi Mark, don’t worry, I’m not a positive behaviour type person. Can’t believe that PTSD hasn’t been acknowledged. I work with a young man that survived Winterbourne only to move to a home whose staff are currently in the courts (potentially a bigger case than Winterbourne) Everyone agrees that he has PTSD and I’ve been working with him (as a Music Therapist) for the past 2 years, along with a great network of support. As always, it’s a matter of luck who you see and what support they give you (or don’t). I am always full of admiration for you and Steven for the way you cope with the challenges of your lives. You are being an amazing father.

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