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That Old Familiar December Feeling

December 28, 2012

And so it has started. It happened at this time last year and yesterday saw the start of this year’s late December traumatic anxiety surfacing for Steven. December is always a difficult time for Steven because being autistic, his normal routines are the foundation stones of his life and his piece of mind and in December they are severely disrupted. The anxiety starts as soon as Countdown goes off the air in the second week in December; it is the first of the routines being dismantled. Then for three days from Christmas Eve to Boxing Day a calm descends because the yearly routine of these three days is that there is no routine which is a routine in itself. These days certainly don’t have the same routine as the other 362 days. Since Steven returned home on Christmas Eve 2010, we now have a new, overwhelming anxiety that will grip from 27th December and probably last until Countdown returns on 7th January.

Last night we went to bed just before 10pm. Between 10 and 11, Steven called me into his room 17 times, seeking reassurance that he’s “not going back to M House for a massive break next Wednesday” (It was a Wednesday that he went away in 2009. It’s not surprising that for someone who remembers that he ate jelly tots on the train on a Thursday in 1996, that he remembers the significance of this particular Wednesday). At 12.30, I was woken by the sound of him sobbing and sat on his bed for half an hour. he was pleading with me to “stay in the Uxbridge house with Dad forever and ever”. This lasted until 1.15 when he fell asleep. At 2.30am, he came rushing into my bedroom, grabbed my arm and nearly pulled me out of bed in his desperation – “Dad’s not putting Steven’s clothes in the bag for a break?” I showed him the empty suitcase and his clothes hanging in his wardrobe but it took until 3.15 before he calmed down and went back to bed. At 4.30. I was awoken again by Steven screaming. This time it was a combination of “not going to M House after Christmas” and “want to stay with Mark Neary all days”. This lasted until 5.15, during which time, Steven became so agitated he wet himself. Neither of us were able to get back to sleep and at 6am the support worker arrived to take charge of the morning bath. Steven manfully got on with his Friday routine of watching a Men Behaving Badly DVD; I got on with my Friday routine of the weekly Sainsbury’s shop at 7am and work at 10am. Later, Steven refused to get out of the car when they got to his Friday day centre because the manager of the positive behaviour unit goes there and “don’t want Dave (name change) to take Steven to M House”.

Let’s not talk about social stories, picture charts and behaviour logs – they don’t even touch the sides when we’re talking this degree of trauma. There is no point in seeking the input from the professionals involved in Steven’s care – they are not allowed to acknowledge how traumatized Steven has been because that (in their eyes) infers liability and that is the thing that matters the most. I don’t give a fuck about liability; I just want a good night’s sleep for the both of us. Whilst I am sitting with Steven, comforting and reassuring him, I am able to bracket off my feelings. Once he is asleep and I am back in my bed, bracketing becomes impossible and the deep sadness of seeing my son so distressed overwhelms me. Despite the obvious drive to avoid any sense of responsibility for their actions, I don’t understand the professional’s position about the trauma. Whenever I have raised the issue over the past year, the attitude I’ve received is of dissmissiveness – they haven’t witnessed it, so I must be exaggerating. But of course, despite everything that happened in 2010, I am still the person that Steven trusts the most; communicates his most frightening anxieties to, so obviously I’m the person who is going to get the full extent of his December anxiety. Basic psychology –  we reveal the most to the people we trust the most. I guess it reveals the enormous chasm within the social care system – where the need to protect the service leads to the denial of the service user’s most basic, natural human experience.

In the midst of all this, yesterday I received Hillingdon’s bundle that they’ve submitted to the first tier tribunal for the Housing Benefit appeal. I need to write a response statement but it’s hard to find the time or motivation when you’re drying a pissed mattress. I’d quite like to watch my new “Dark Knight Rises” DVD before I give attention to a  Housing Benefit appeal, that is, like the DoL of 2010, a complete sham – a state decision used as a cover for a more unseemly action.

Post deprivation of liberty trauma; a vacuous housing benefit appeal; Batman. Happy New Year. We had a fantastic time on Boxing Day. Steven, me and two of the support workers went to Hampton open air swimming pool (incidentally, one of the things rejected on Steven’s person centred plan wish list for being too dangerous). We swam. We froze. We whizzed down the water slide. We sang The Beautiful South songs underwater. We felt alive for two hours. Social care systems can kill the soul; they have nothing to do with living. And how on earth do we begin to address that tragedy?

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From → Social Care

6 Comments
  1. But people like Steven and others like him don’t get traumatised or need counselling after abuse do they?Thats for people who can speak and engage properly, besides offering counselling may just trudge up more names and further investigations. .Hardly any people from the abuse in Cornwall Budock hospital or Winterbourne view were offered counselling some people from 2006 are still showing distressing symptoms.Thankfully you are there for him Mark and overtime his confidence will improve .I hope the events have been included in his CCA and a contingency emergency plan in his care plan for the future which in law will protect him ever going back
    liz xx

  2. Crikey Liz – this is Hillingdon we’re talking about. Of course, it is not going to be addressed in his CCA – that’s what I meant about the avoidance of responsibility. I have nothing in writing but verbally was told that if there is a problem requiring extra respite, they would consider additional respite in the home “for a few days”. And there is absolutely no reference at all to “the events”. They cant do that because they’d be shit scared of that being seeing as an admittance and therefore they might be seen as liable for the trauma.

    • Exactly Mark.Has he had a CCA after the events of last year? they cant control what goes in there he was abused and traumatised ,You as his carer can say this and also have others GP friends etc write letters to the same effect they have to record what you say and others [Luke Clements told me] and nowadays everything is outcome based .What were the positive outcomes when Steven returned home? What was the outcomes of sending him away?Hillingdon will understand that and wont have a leg to stand on but i would suggest never do a CCA /care plan without a witness or advocate present.

  3. Suzanne permalink

    After reading what you wrote about Steven and Christmas it has to move you to tears we only suffered one night being deprived of john and I understand what you say about their concern about liable

  4. My heart breaks for you. I feel a personal connection to this story as my 6 year old son, who is on the severe side of the Autism spectrum, is currently in foster care for no good reason at all. Unfortunately he is non-verbal, but I will not be surprised when someday he is home and better able to communicate, like Steven, the horrible trauma that has been forced upon him. He also has two siblings, also taken but cruelly separated and in another “home.”

  5. LisaArlin permalink

    I can relate to your story thank God your son is with you and out of the claws of The Minisry of kidnapping and family destruction. The MCFD dont care about children they must hate them for example providing access only once per week and having a consistant routine gives a child security and any child needs to know they are loved. I am so glad your contected with Derek Hoare! The MCFD arent paid toprotect children or assist families and keep them to gether they are paid to destroy us! The main problem is the MCFDare never accountable! We as families need to work together and expose MCFDjust how evil they really are I dealt with the same office as you and Derek and the Director Bruce Mcniell my faceboo group is MCFD busters you can share your atory there to we need more families from surrey bc to expose mcfd and support each other it really does make adifferance!I believe there needs to be some serious changes toMCFDbecause to many children are dying or abused in thier care and to many good families like the Baynes from Surrey BC are being destroyed that is why we must expose them to iniciate these changes! God bless you again my group mcfd busters or check out mcfdinjustice on face book get connected!

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