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Goodbye Uxbridge – Hello Cowley

November 4, 2013

This is a rambling, incoherent narrative of the last seven days. Seven days when we finally escaped from Uxbridge and became Cowley men. We moved on Friday and tonight, being my respite night, I caught the bus into Uxbridge for something to eat. Although it was only four days ago, it feels like months have passed since I was last there. I’m not sure whether I’ll go back there again. It feels like history.

A week ago today, I was sitting in a hotel in Birmingham, preparing my piece for the Mental Capacity Conference, the following day. It went really well and the more I speak at these events, the more I realise that our experience in 2010 wasn’t typical – other authorities seem to take the MCA a lot more seriously than Hillingdon. I met some great people – it’s always very weird meeting people who have been using the “Neary Case” in their training and their practice and seeing the impact that Steven’s experience has had across the country.

Back home on Wednesday, it was time to get on with the packing. I was surprised by how ruthless I was – binning stuff that belongs in the past. I shredded all the social care records from 2010 – it didn’t feel right to contaminate our new home with them.

In the midst of all the packing, I received a call from the House of Lords’ Committee, reviewing the MCA. My submission has led to me being called to give evidence to the committee next week. I hope I don’t alienate some readers of this blog but it was disappointing to hear how few parents/carers had made a submission. As carers, we are often in a passive, “on the receiving end” position -it’s a shame that on an occasion that our input was sought, our response was so poor.

Come Friday, and the day of the move, it was me that had the meltdown, not Steven. My sister and nephew were there every step of the way and all of Steven’s support workers who weren’t on duty that day, volunteered to come in. I guess the pressure of organising everything and everybody got too much for me and by the afternoon, I found myself in my new bedroom, sorting my DVDs into alphabetical order, whilst the support staff got on with assembling wardrobes, dismantling Steven’s sofa to get it through the front door and building shelf units. The only major problems were that there was no TV aerial (it is being installed tomorrow) and no Internet connection (sorted today).

I am so proud of Steven. To cope with a move, without many of his normal props and with no TV, he’s been phenomenal. He is very proud that he is now a Cowley man, like his Uncle Wayne, and on the couple of occasions that he’s had a wobble, I’ve just said: “Do Cowley man have silly heads on or calm, sensible heads?” and that seems to do the trick. Of course, it could be a honeymoon period but it doesn’t feel like that. It feels like a much more mature young man who now has the inner resources to cope with change better.

A couple of random things that are great but need some adjustment on our part. The quietness. We have lived for four years where both sides of our flat have backed on to busy main roads. We couldn’t open the bedroom windows in the summer because the noise was unbearable. And windows. None of our windows in the flat had a view because they were so high up. In the new house, with full curtains, our bedrooms are pitch black at night. Yesterday, Steven didn’t wake up until the support worker rang the front door bell. Steven was thrown by this for over an hour and wanted the support worker to “go away and come back in the morning”. Later though, on the way to the Mencap pool, Steven was telling the cab driver about the move and said: “Steven Neary had a lay in this morning – it was excellent”. Partly because I haven’t had the Internet, I’ve found myself reading in bed for the last two nights. It feels strangely old – fashioned but wonderful at the same time and I might just keep it up.

The broadband was sorted today and a very strange thing happened. The 2010 “Get Steven Home” group on Facebook continues to be a thriving community. Today, I signed in to find a request to join from the guy who was the assistant manager at the positive behaviour unit back in 2010 – he left a few months after Steven came home. I was surprised that I didn’t feel threatened by this – it just struck me as a marker of how far Steven and I have come since those dark days.

I am writing this blog during my respite evening out. I am in my new local – it’s an ever changing pub. I came in for an hour early Saturday evening and it was full of coked up young blokes watching the football. Yesterday, for Sunday lunch, at the age of 54, I was the youngest person by several decades. Tonight, there is a darts tournament taking place and the jukebox is playing “Down In The Tube Station at Midnight” by The Jam – my 7th favourite song of all time.

It’s been an incredible few days. Listening to the brilliant Peter Jones on classic Just a Minute as I organise my underpants drawer; Steven not being bothered by missing Countdown as he settles down to watch Muriel’s Wedding instead. Realising again how much Steven’s support workers care for him. Being moved to tears by the kindness of my family and friends.

We’re Cowley men now and I think we’re going to be okay.


From → Personal Stuff

  1. I live in Kingston and remember talking to the Asperger’s employment support worker a couple of years ago, and I mentioned your case to her. She said that, oh yes, she had done some “deprivation of liberty training” and your case was one of those they studied. Not sure if that was through the council, though, or some other organisation.

    It would be interesting to know if their attitude to the MCA varies according to which party runs the council — there are some Tory councils which provide themselves on not providing more than the bare minimum of services in response to low council tax, Wandsworth being the best-known example.

    So glad you’ve settled in well and that Stephen is handling it well.

  2. Maggie permalink

    So glad the move went well- it’s stressful under any circumstances. Hope your new home brings you both peace and contentment.

  3. Emily permalink

    wonderful post. happy for steven and happy for you x

  4. duncfmac permalink

    Wishing you both happiness in your new home. Inspiring!

  5. Louise permalink

    Wishing you both joy and happiness for the future in your new home.

  6. Sally permalink

    How lovely to hear of your happy new home, all of which has been hard won by your heroic efforts.
    I thought of your blog yesterday:when a letter from the DCT arrived saying they are “committed to providing each child with a tailored service which meets his/her needs” etc etc. It was to announce that children wouldn’t have named workers any more..but if you call, (you the parent are now the worker) someone will pick up the phone…..although there is a high demand…
    Best wishes to you both! Cowley men at last!

  7. Nichola permalink

    Steven is keen on art so if you Cowley men feel like a trip south-east there is an exhibition of Whistler paintings at the Dulwich Picture Gallery till January. It never gets crowded there–even at weekends–and it has a good cafe, nice loos and lovely grounds.

  8. sparrow permalink

    hello Mark + Steven – so good to hear everything’s gone well and that you’re both Cowley men now. A new era for you both. Enjoy it.

  9. dave permalink

    Good luck to you both in your new home.
    And I gather that you had some good news from Giles.

    • Yes. The Upper Tier have accepted my appeal for a hearing. All a bit academic now that we’ve moved but if we win, it could be useful for the future

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