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August 14, 2014

I need a blindfold on my journey from home to work. After yesterday in the cafe, I witnessed a similar event today. And once again, my mind was racing, painting a whole backstory. The weekly shop took less time than usual so I stopped off in a coffee shop. Outside a young woman was having a serious meltdown. Her two carers were trying to coax her into various shops. They went into a charity shop but reappeared a few seconds later. There was a real commotion when they were in the newsagents. The carers stopped dead outside the estate agents, trying to interest her in the properties on display in the window. Nothing worked. It was very painful to watch. It was all so ……. meaningless.

I’m no expert but I do know that most people with autism feel safest with a routine. Planning is important – spontaneity is dodgy. (Last week, I brought some hot dog rolls, thinking it would make a nice surprise for Sundays tea. It completely threw Steven. Even though he’s partial to a hot dog, we have cheese on toast for Sunday tea. The unplanned change was too much for him. I’d dropped a clanger). A morning of unfocused, unplanned meandering around the shops is tricky for most autistic people. Here my fantasy kicked in – the staff probably arrived on shift. They didn’t know which of the independent living tenants they’d be working with that day. Nobody is going to ask the woman herself what shed like to day with her day. Perhaps one of the support workers needed to go to the post office next door to the charity shop (it happens). Who knows?

Steven’s week is meticulously planned. At 9pm every day we run through everything that is going to happen the next day. We repeat the process, the next morning after breakfast. For a taster, here’s today’s:

× Watch Gladiators video with Michael.
× Dad will go to Tescos for the shopping
× Alan will come & put trunks and towel in the bag and go to Lloyd’s swimming pool for a big swim
× Come home and have spaghetti hoops and orange juice.
× Take clothes out of washing machine & hang them up
× Have a marvellous musical montage with the Lightning Seeds.
× Watch Countdown & Deal or No Deal
× Dad will be home
× Michael will go and get our lovely cod and chips
× Michael will go home and Steven will have his bath
× Have lovely cold milk and raisons
× Alan will go home & do music videos and DVDs with Dad
× Speak to Uncle Wayne on the phone
× Have a blackcurrant Chewitt
× Watch Fawlty Towers with Dad
× Go to bed

As you can see its pretty detailed but is important to keep anxiety at bay. It requires patience and a memory like an elephant.

When I see scenes like in the cafe yesterday or the estate agents today, I become very scared for Stevens future. When I’m no longer around, who will be interested enough to plan his day with him? What will happen when someone takes him out for a meaningless walk? Who will Steven be able to discuss Ian Brodie’s career with?

Perhaps I should just wear a permanent blindfold.

From → Social Care

  1. It reminds me of a day when I was searching for clothes in larger sizes on the sale rack in a hot shop. Another larger lady came in with a very petite person with a learning disability. The carer was looking on the bigger rack. The lady got distressed and the staff were all looking at her. To my horror the carer told her quite quietly to turn round and keep quiet and get out.
    I followed them out and asked who she was in a quiet way so not to upset the lady being cared for. A cock and bull story followed, she said she was a friend. An hour later I saw them again in another shop. On that ladies time, employed by her probably and not doing anything she wanted to do. Where else would that happen? Aimless stupid days and sinister people too.

  2. Pauline Thomas permalink

    Mark sometimes I wonder how we (carers), keep going. In the beginning we have this new life and we hope and pray that love will make it better. It usually does. We are young and energetic and we can do this (raise a child with disabilities). The school’s are good, the college too but all too soon they fall under the umbrella of the social services. This is like falling off a wall. This is when we acquire a suit of armour because now we have to do battle with the LA and it’s social care officers. If we are lucky the day services are not too bad, but wait a minute, they are closing them down. Someone somewhere has had a vision and has deemed that my son and his friends needs to be out in the community. Yes the same community that usually ignores them, ridicles them and generally runs a mile from anyone who looks or acts ‘differently’.

    Looking at the sort of day you share with Steven reminds me that we are extraordinary people and we do have to have ‘love belief and balls’ or otherwise we will go under. Our loved ones all come with their own unique challenges, and some carers crosses are bigger than others. Unfortunately it is getting harder and harder to convince the powerful ones in government and local government that we should be cherished and not demonised for asking for what everyone without caring responsibilies take for granted.

    • Great blog Mark, & Pauline, I totally agree with you. At the moment my daughter gets one-to-one report with great workers. I’m already worrying: what happens when these great workers are no longer there, when I’m no longer there. Who else will understand what “Eddie the Elephant” is saying or that Frank (the big boss) works at the library. It’s scary stuff.

  3. To conflate your last two posts – I would say my daughter lives “independently” in the same sense Steven does. She “independently” organises her day the way she wants it to be, with the help of her family and carers who “get” what is important to her. She also enjoys shopping trips, and sometimes going along with what the carers want to do as well. When we used Agency carers, it depended on the carer. Most of them were fine, but I dreaded those who had other ideas of how she should spend her time. The opposite of independent as far as I was concerned, as my daughter didn’t always realise she could say No. When I read about Claire Dyer’s – and Steven’s – experience at the hands of those who believe in behaviour modification, I am filled with terror. The kind of regime guaranteed to make my daughter’s behaviour become impossible in seconds. Feeling secure, and with the kind of independence she wants, it isn’t. How do we drop the theories, and ensure a supply of the kind of people who CAN care?

    My daughter’s life is more limited than I would like; it suits her. How do we find a balance?

  4. meg permalink

    What you describe is familiar to me as I work in adult LD. However, please know we are not all so incapable of forward planning and thinking ahead. Even when things in the background go tits up – staff sickness for example, with a sound knowledge if your ‘ service user’ (I loathe the term, I prefer friend but hey ho) a little forethought, good communication between staff and a damned good sense of humour, it is possible to follow a plan. Often swinging by the seat of your pants, but still possible

  5. Weary Mother permalink


    many support staff rarely if ever see, far less talk to, other support workers. They do not work in a team, they arrive at an address do the ‘job’ and then move on, unpaid, to log on to paid time with the next support recipient. Fifteen minute calls do not leave much more time than it takes to take a coat off and put it on again. Even in this exploitative employment world there are genuine hero’s who build a caring and friendly relationship with the people they ‘support’. And then again there are others who do not. Contracts can be cut so tight financially, that it can mean constant uncertainty around who works on any day, and/or at what time they will turn up. Corners can get cut and exploitation of the most vulnerable happens routinely. That can mean support staff as well as people with disabilities.

    • meg permalink

      I am appalled that ‘support’ can be so shoddy for both workers and their charges. I work mainly with adults who do live independently in their own home with some support, as part of a small team. We each have a work mobile and email and use these to keep one another constantly apprised of changes, needs, appointments and plans. We have internet access to care plans via secure intranet, regular team meetings and supervision so I guess we and our LD adults are very lucky. I have worked alongside workers from other companies who get 15 minutes for visits and all I can say of them is that they do a lot of minutes throughout the day gratis. It is disgusting and inhumane for both parties to be so rushed.

      • Surely extra minutes spent with one mean someone else is waiting for help to get out of bed? Who ever thought 15 minutes visits were feasible anyway? No decent care worker would even attempt that kind of care – so who is providing it?

        As for carers being “friends” agencies used by my LA (one of the better ones) have a nervous breakdown at that idea. The months when “Boundaries” were the favoured training topic were a nightmare to us. That one didn’t last long, fortunately. Preceded by “Independence Training” and followed by “Person Centred Plans” I seem to remember. Used to wonder who the person the plan was centred on was, because it didn’t often seem to be my daughter. Of course, all of these things are relevant and important – but they don’t often seem to have much to do with common sense and realities by the time they filter down to the less involved care workers, anxious about their jobs.

        Of course a properly focused team approach is much better. Didn’t think it still existed in these cash strapped times. In my experience, a lot depends on the manager’s priorities. These days, it can still seem to have more to do with ticking boxes for CQC inspections and funding than the well-being of the “client”. Paper work and systems are important. People more so.

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