This morning I had a meeting with Steven’s sixth speech and language therapist (commonly known as a SALT) in two years. The purpose of the meeting was to introduce a new social story to Steven. Since my last spell of illness in 2009 that led to Steven being kept away from his home for a year, he understandably has an ongoing anxiety about me becoming sick again. I regularly have to deal with the anxious enquiry if ever I cough or sneeze: “Dad’s not getting that flu again?” The idea of this latest social story is to help Steven manage his anxiety around illness.
Help, No seriously, please help. I have no idea, despite years of practice, of how to deal with absurdities like this. I feel like I’ve taken a serum of nonsense and become paralysed as a result.
The SALT laid the terms of this project by reassuring me that it was a collaborative process and how important it was that I and the support workers take the lead in introducing the story to Steven and monitoring its impact. She then presented me with the story she’d already written; a list of instructions in how to deliver it and a reporting log to record Steven’s reaction to the story and measure outcomes. There was also a subtext during this induction. The SALT had observed two of Steven’s support workers working with him whilst he was making his Friday pizza and she was concerned that they “related to him in different ways”. I know what I’m meant to say at this point but instead I said that I think it is fabulous that Steven, a man with severe autism, is able to build completely unique, individual relationships with each of his support workers and I’m proud that he can relate to them as individuals. That was the wrong answer.
The social story is called: “When Someone Is Ill” and consists of the following five pages:
Page one: “When someone is ill their body can feel many different things”.
Page two: “Their body might hurt. This can include one or more of the following: headache, sore throat, chest hurts, stomach ache, backache”.
Page three: “They might have a snottty nose or they might have a cough”.
Page four: “When someone starts to feel ill there are many ways to help them feel better. They might need to: get some rest, see a doctor, take some medicine”.
Page five: “These things are for helping them to feel better so they can go back to finishing their work and doing fun activities”.
Accepting the invitation that “your feedback is welcome Mr Neary”, I tentatively suggested that Steven would struggle with the length of the sentences and several of the words contained therein. It is not the language he uses and the vague terms are ones he finds very hard to follow. That was the wrong feedback. Meeting arranged for a weeks time to review how the introduction has gone.
We end the meeting with the SALT informing me that there is “no right or wrong way in how Steven reacts to the story”, alerting me immediately that there is a right and wrong way in her eyes. I didn’t want to burden the support workers with the first read through, but remembering that one of the instructions is to only read the story when Steven is in a receptive and settled mood, I spot a window of opportunity for later. Steven’s morning support worker clocks off at 2.30 and the other worker who will be covering for my respite night will be clocking on at 5pm. Steven has already planned that he and I watch the Fawlty Towers episode “Gourmet Night” (“Ducks off”) which he finds hysterical. I decide to read the story between Basil and Countdown starting. I read the story verbatim and when we’ve got to page two, Steven said “Put it away Dad”. My instinct tells me that this will be seen as a wrong reaction and if I stop reading my reaction will be wrong too, so I persist. By the time I get to the end, Steven has said “put it away Dad” four times and by the time Countdown starts, his mood is much less settled. Where is his empathy: doesn’t he realise I’ve got a monitoring form to complete and describing what has happened is likely to be problematic come next week’s meeting.
Here are a few random thoughts I’ve had since Johnathon solved today’s Countdown conundrum:
1) Is it okay to change the content and language of the story?
2) Will the outcome be another tick in the box of Mr Neary being an uncooperative parent?
3) Why, as Hillingdon close all their day centres, is it okay for so much energy to be given to stuff like this?
4) How much does the SALT earn and could that money go towards the closing day centres?
5) Does anybody understand autism?
6) Does anybody understand Steven?
7) If I pretend next week that everything went well, will I be marked down as “disguised compliance”?
8) Why, whenever I go to these meetings, does there feel like so many elephants in the room, I want to sing the Marching Song from The Jungle Book?
9) We have been under social care for the past 8 years. Why, as each year passes, does it feel that the gulf between what could be useful and what is actually delivered, seem bigger?
As I said earlier, please help. This sort of situation disturbs me and I know that my head will be full to bursting between now and next week’s meeting on how to present this at the meeting. And it doesn’t matter at all that my gut tells me that I should be giving this no energy whatsoever. Why does person centred support feel so stressful and disempowering?