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Legacies & Village Fetes

June 5, 2015

Phew. Coming up for air.

Steven had a three hour meltdown last night. Stupidly, I was unprepared. I’d forgotten the annual nature of this meltdown.

Tomorrow, we’re off to Torquay. Steven still carries the legacy of having his annual holiday canceled the year he was in the ATU. What the staff didn’t appreciate (or just weren’t bothered about) was not only was he looking forward to going to Somerset, but the holiday is one of the important markers during his year. It’s part of his routine and had been for 15 years. The management at the Unit never got how important routines are for Steven, so subsequently never acknowledged the part they were playing in his ongoing distress. They put him in a double bind – they would ignore his routines, Steven would find that difficult and then they used his distress as a reason for keeping him there. And they could never offer Steven an understandable reason why he couldn’t go to Somerset, so to this day, he believes it was because he threw a cup of apple juice over one of the staff.

So last night, the anxiety that he wouldn’t be allowed to go to Torquay kicked in. I ended up having to pack a day early to reassure him. He woke up at 1.30 wanting to check that I had packed 7 bags of crisps, one for each day we’re away. I anticipate more of the same today.

I’m often asked how I can forgive Hillingdon for what they did and the trauma they caused and the honest answer is that I can’t. Certainly not on days like yesterday. I’ve been asked by ActForTheAct to make a short film for their Human Rights campaign. I had an idea to do the film next week from Torquay, with Steven enjoying himself in the pool. After all, if it wasn’t for the HRA, Steven would be in a unit in Wales and never enjoying a holiday ever again.

Yesterday was also a big day for #LBBill, with the drawing of the Private Members Bill ballot. I tuned in to watch it live and was astonished at how quaint and spectacularly British it all was. For something so important, it was conducted like drawing the raffle at the village fete. But hey, there’s not much difference between a bill that could change the lives of thousands of disabled people and a jar of home made chutney.

If you can’t beat them, join them. So later I did the draw for the staff rotas for next week. The one shift they all want to avoid is the trip to Shoalstone pool, an unheated, open air pool in Brixham that we took Steven to in 1998. He is so excited about going back there; the support workers less so. So, I put their names in a hat. And the two lucky winners quickly drew up their own Bill – the wearing of thermal bodysuits is a statutory requirement for Shoalstone pool.

Can you buy them in Marks & Spencers?


From → Social Care

  1. Sally permalink

    I am sorry you have had such a rough night. Sounds like once you are on your way all will be well, freezing pool notwithstanding.
    An escalation of difficult behaviour in my experience is seldom attributed to anything staff in an institution are doing, or not doing. The behaviour is presented as being utterly random , out of the blue, shocking !! How very difficult is this person! This leads to further sanctions and ,as you point out ,a worsening of the behaviour which leads to..etc etc.. until the person has lost everything and is pretty well doing nothing, and is either beside themselves (bad!) or sunk into despair (Good! the sanctions are working!)
    If it isn’t the institution’s fault it must be the person..or…wait a minute..who else is to hand…ah yes, the parents!
    It is a common experience to be asked in accusing tones about behaviour which has happened when your person is not with you. I get this a lot with my son’s school. A call and a syrupy voice saying “He has done XYZ…we are Very Concerend…do you have any ideas why ?..we told him for doing that he would loose A…and then he kicked a teacher! So we told him he will loose A, twice! He is crying now. Why do you think it is?”
    Horrible horrible behaviour. On the institution’s part.

  2. meg permalink

    Sounds like things are going fairly well Mark. By now you’ll all be on your way or maybe just arriving. Joking aside though, perhaps you can hire the workers a suit each locally. Could make the short straw a little more comfortable and less expensive. I sincerely hope you are all having a ball. You certainly deserve to

  3. nicI permalink

    so pleased you summed up the quaintness of it all ( the draw ) I managed to tune in to the room and then I started to fidget. I desperately wanted a ballot paper from ‘ on top’, I felt that was where the good guys/gals were. I am ashamed to say I loved the comment” all the 4s” , real comforting old stuff but hardly fitting really given the true gravity of meaningful rights for all disabled people. I am pinning all my hopes on the MP for Eastbourne. Have a wonderful time away.

  4. Wishing you all a lovely holiday. X

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