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Mightiness & Maggots

March 31, 2016

I’ve been booked to give a talk tomorrow morning for one of the big care agencies in our neighbouring borough. It was arranged ages ago and I contacted them today to double check the arrangements. It was a good job I did. I assumed that they wanted me to do my Get Steven Home talk. They didn’t. They heard that one two years ago. They want something more specific to their audience and have given me the title “What Makes A Good Support Worker”.

Coincidentally, I’ve been collating the stories for Seven days of Action and one of the excuses that comes up time and again as to why people stay so long in ATUs is that they can’t find appropriate, trained staff to support the home care package. I always feel my hackled being raised whenever I hear that excuse.

My job specification consists fundamentally of five “qualities”:

  1. Be interested in Steven.
  2. Be authentic
  3. Engage
  4. Be funny
  5. Be professional.

In that order. Steven doesn’t need manual handling, so you don’t need to go on a manual handling course. I can run Mental Capacity Act training for the support workers. In fact, we just had a very lively session on the five principles. And I don’t need someone who can write a comprehensive risk assessment of the Mencap Pool or the gym.

One story that I will tell tomorrow to illustrate all of the above.

For Steven’s recent birthday, I managed to get him the missing Gladiators VHS tape that he was missing from his collection. We have tapes with five of the eight first round heats from the 1993 series, the four quarter final episodes and the semi final and grand final. Amazon came up trumps with a VHS that contained heats 6 to 8 from the 1993 series.

Gladiators is Steven’s “centering” viewing on a Thursday morning. Each day, Steven will watch an episode from a favourite TV show after his breakfast and it focuses him on the day ahead. We’ve learned over a number of years that if Steven has unfilled time first thing in the morning, he can get very agitated and a meltdown is never far away. So, Wednesdays is an episode of Mr Bean, Friday is Fawlty Towers etc etc. Steven has had the same support worker on Thursday mornings for the past three years.

So there we were on birthday morning, Steven slips in the VHS and up pop contenders that we are familiar with from the later quarter final programmes. Michael, the support worker, immediately said:

“Hey Steven. Look who it is. It’s Sirleen – the mighty maggot”.

A huge grin spread over Steven’s face. He got up and started doing his Tigger bounce around the living room. He was excited because the support worker had recognised the contender and in that recognition, Steven’s and Michael’s worlds met. It was beautiful and very moving.

Someone told me a long time ago that if you wait for someone with autism to enter your world, you’ll be waiting a bloody long time. Best thing to do, if you want to connect, is to enter their world and then, you might engage.

For the past three years between 7am and 8am, the support worker hasn’t been on his phone. He’s not been reading the paper. He has been interested enough in what interests Steven, engaged enough, to recognise Sirleen Clark – the Mighty Maggot.

That’s what makes a good support worker.


From → Social Care

  1. What if the autistic supported do not get on with their allotted worker.

    From what I have overheard in my kitchen, from those working also in supported, it is very much a factory.

    One worker said I have to spend 10 minutes talking to x, then 20 minutes with Y, then make sure L is alright etc…………………………..

  2. Then let me be positive 🙂 Mark, thank you for the glimpses into Steven’s and your world. I have learnt such a lot from you that I can apply to my own, very different, care situation. It’s good to know I’m not alone 🙂

  3. lucy permalink

    lovely. I imagine gladiators isn’t yet available on dvd! well done on tracking down the VHS 😉

  4. Lizzie D permalink

    Officially, my daughter isn’t autistic, she has CP,/a patchily damaged brain, but there are overlaps with behavioural issues. Mishandled, she rapidly becomes a nightmare – but as you say, enter into her world, and she is completely different.

    Before we took on DP, she received her care through an agency, and between the two of us we became fairly expert at spotting the kind of carer who COULD, on a good day, bring her out of her own world by engaging with it. Many of them were brilliant, but we both learned to dread those who took their training literally and wanted to do things by the book, so when I was responsible for employing them,prior “training” was not high on my list of priorities. Don’t think I was as well organised as you, but my list – and my daughter’s list – is much the same as yours. Someone did say to me years ago that my daughter should get used to being looked after by people she didn;t like – but why? That is never going to work. We have been lucky to keep the same team for some years now, and I am fairly impressed by how they have learned what works and what doesn;t. We are all experts on her favourite film directors, and other preoccupations, she is happier and more stable than she has ever been. I make sure their working conditions are good, and they do seem to positively enjoy her ecccentricities and sense of humour.

    But I do live in dread of the odd occasion when leave/family complications cause a hiccup. Why is it made so hard to recruit/fill gaps? Agencies will happily provide their expensive workers, but finding your own is a lot harder.

  5. In Music Therapy in can be very tempting for therapists to “draw autistic people out” of their style of music into ours. This assumes that our music is somehow normal and that theirs isn’t, thereby pathologising their music. I prefer to join their musical landscape, where we can actually meet as equals. That can then lead to a place where we can both respect each others way of using musical language. I’m currently (very slowly!) working on a paper that suggests seeing autism in cultural terms, not just diagnostic. Perhaps people with autism have their own way of doing things – relating, creating art, music, literature – and like other cultures, this should be respected and celebrated. This should then have an impact on my profession’s view of autism and how to engage with people on the spectrum.

  6. Sally permalink

    Yes, agree totally with your training. Entering the person’s World is no mystic process. It’s observing what interests them, calms them, makes them happy. It’s the little extra efforts to try to join in or show the person you appreciate their interests. It’s the shared joke, the chat, the small eagerly anticipated activities.
    A kind and good Befriender has today taken my son on an eagerly planned morning’s outing to see something related to one of his favourite TV shows. The Befriender watched the shows, learned the plots , sat patiently for ages having it all explained again and again.
    Back they came, my son radiant.
    I understand the concern that to give in to the obsessions/special interests can backfire-or leave the person even more apart in their obsessive world. Everything that helps with ASD and LD can also bite us in the backside in due course. However , i think joining in with interests in the way you describe also helps connect the person to you and to the world around them.

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