Two stories from yesterday about the trickiness in processing your emotions.
Yesterday afternoon, Steven had an hour long meltdown. It was the longest and most intense one he’s had in ages. There was no aggressive behaviour but lots of tears, screaming and endless repetitive talking. “Don’t want Christmas presents. Do want Christmas presents”. “Don’t want to go swimming tomorrow. Want to go swimming tomorrow”. It’s exhausting. And there’s no answer to it – you have to withstand the meltdown, in the knowledge that it will pass eventually. Likewise, Steven is learning to withstand a meltdown and handle the pain of going through it.
Needless to say, it triggers history – “Oh no – is this the start of the December anxiety that will last all the way through to mid January?” In amongst the repetitive talking, Steven will bring up the Unit, and his anxiety about going back there – so it is obviously with him as well. But I’ve also learned not to try and guess what is the cause of the emotional distress because in his own way, Steven will normally let me know. Probably not on the same day, certainly not whilst he’s in the midst of the meltdown. But at some point in the future, the reason for the distress will come out.
Amazingly, yesterday, the reason did come out. Eventually, Steven calmed and settled to watching Deal or No Deal. Knackered, I went into the kitchen to start cooking his tea. Suddenly, as calm as you like, Steven came into the kitchen and announced: “Steven Neary was crying because Ishmael has gone to a new work”. (Ishmael is the long term support worker who left last weekend). And with that, he went back to join Noel Edmonds. It was all so straight forward and matter of fact. And incredible and sad at the same time. Incredible on several counts: Firstly that an autistic man can make such a strong emotional connection with a friend that he’s going to feel real upset when that friend is no longer around. That knocks several theories about how an autistic person doesn’t feel human connections out of the window. It is also incredible that an hour after the meltdown, Steven was able to articulate exactly what had been overwhelming him. It’s a shame that he couldn’t do it straightaway but then who can – I’d be out of a job if we could do instant emotional processing. It does also illustrate, how powerful and overwhelming an emotional reaction can be to someone with autism. I get sick of hearing about how social stories, ABC charts, SMART behaviour logs will sort all this out – they don’t and they won’t. And it is boring listening to behaviourists speculate on the reasons for the meltdown when they randomly pick up on one of the things said in the heat of the meltdown. The one thing that Steven didn’t mention during the intense hour was the departed support worker. Nobody would have made that connection except Steven himself and thank goodness, he has the emotional literacy to spot that. The sadness is that the fundamental will never really change – when faced with an emotion that he finds overwhelming, Steven is more than likely to go into a meltdown. That is part and parcel of the autistic condition and to suggest, as some professionals often have, that he could do it differently, denies his fundamental experience and makes the matter worse. So, lets be realistic – we batten down the hatches, hold his hand, speak reassuringly, keep him safe and trust that the cause of the distress will come out and can be worked through (out of meltdown).
On to me. I went out for my respite night last night and felt exhausted. I was going to write this blog whilst out but couldn’t string a sentence together. I knew this would happen. The last fourteen months and the uncertainty about where we would be living has to have a price. I’m pretty emotionally resilient and not afraid to face up to what’s going on inside my head but 14 months is a long time to live with such an unbearable daily pressure. There were so many twists and turns (that still continue but I’ll leave the story of how the council have debited my account for Steven’s council tax without any authority, for another day!) that my tank has been drained quite low. Now that we’re settled in the new house, the suppressed stuff is bound to surface. I am going to think about me a bit more though. Yesterday morning I went out to buy the last of the Christmas presents. I came home with four big bags and a feeling of sadness. And as I started to wrap them, I realised that I hadn’t got anything for me. There’s no point in expecting someone else to get a present from Steven to me – if I want one, I’ll have to get it myself. So, tomorrow, I’m going to treat myself.
In a way, we’re quite similar and that, albeit for different reasons, we both don’t express our emotional reaction immediately. With good reason.
On a lighter note, in the midst of the meltdown, the postman arrived with a package – it was Steven’s print of Whistler’s Mother. And on 25th December, it will take pride of place on his new living room wall.
This week the agency that supplies Steven’s support workers were inspected by the CQC. It sounds like it was a very thorough inspection. They spent a long time in the office – they spoke to me – they spoke to three of the support workers – and, they spoke to Steven’s social worker, or for some reason, the manager of the positive behaviour unit. It may be that the CQC still have him as their contact point from three years ago. I know that whilst Steven was held in the unit, I was deliberately blocked from giving feedback – when the CQC did their inspection of the agency a year later, they were surprised that I existed!
The reason why I’ve mentioned that we don’t know whether it was the social worker or the unit manager who gave feedback, is because the only negative feedback came from that quarter. And it struck me as being a bitter move. And like so much else connected with the LA, so biased as to be laughable. But it’s not laughable because the reputation of the agency hangs on things like this.
For the past four years, Steven has gone once a week to a day centre run by the positive behaviour team. In all honesty, I’d rather he didn’t go there. Our history is contaminated and there is always the risk that they will still interpret Steven’s behaviour through their 2010 lens and cause all sorts of problems. The support workers are bundles of anxiety whilst they are they – continuously being watched and their interactions with Steven logged by the centre’s own staff. It must be a horrible working atmosphere. I found out recently that the centre has been “rebranded” or “reimagined” – it isn’t a day centre any more – it’s an “outreach base”. God knows what that means but it might mean another of the new innovations (like meeting in Costa), where the expectation is you start at the building and then go off somewhere from there. That’s pure guesswork though.
Despite my reservations, Steven still goes there because he seems to like the place. He likes the three other service users and looks forward to seeing the manager there and having a sing song. He is there for four hours and the only thing he does there is to make his pepperoni pizza – there is nothing else to do, so the rest of the time, he sits and watches the telly.
The feedback the CQC received was that there were concerns about the lack of interaction with the support workers and they were not motivating Steven to engage with the activities on offer. This is where the framing becomes a bit dodgy. The feedback makes it sound like the place is a hive of activity but the reality is quite the opposite. It is hard for the support staff to motivate Steven to do something that doesn’t exist. But that piece of the jigsaw is left out of the official feedback. I’m going to ring the CQC on Monday and put them straight on that one – I don’t like them being misled – especially as the misleading is only done to score some bitter points.
The only other query that came out of the inspection was the “lack of record keeping”. I knew that would come up ever since I decided last year not to keep any of those intrusive logs in the house any more. It was quite an awkward moment with the CQC man because he obviously took it for granted that every home care package should come with a mountain of paperwork. But that’s not my problem – if the agency need to keep records purely for an inspection, they can do that and keep them in their office.
So, all in all, a good inspection, soured slightly by the continual need of the LA to get in a revenge poke whenever the opening arises. Such a shame.
Steven had a great lesson at school when he was about 11 about fire safety. He was really engaged by the messages and would tell anyone keen to listen about how you should manage a fire in your home. And of course, he has also learned a lot about this subject from that other great expert of fire safety – Basil Fawlty.
A good friend of mine brought us a great housewarmming present. It is one of those monster steam irons that looks like it belongs in Aladdin. It pumps out incredible amounts of steam, so much so that my kitchen, on ironing day, resembles a Meat Loaf video.
On Tuesday, Steven’s support worker was in the kitchen doing a pile of ironing. Steven was in the living room watching Countdown and I was upstairs writing Christmas cards. All of a sudden I heard a loud but calm voice from downstairs – “EVERYBODY OUT NOW PLEASE”. I rushed downstairs to find Steven leading the support worker by the arm into the garden. The kitchen looked like a sauna. Steven saw me and ordered: “Outside please Dad – Fire. F-F-F-Fire”.
I explained to him that it was just steam from the iron and that we could go safely back indoors. He wasn’t sure, perhaps fearing he’d be sent to his doom like Manuel. The resolution was as follows:
Me: “It’s not fire Steve. It’s only steam”.
Steven: “Steam? Like East 17?”
Me: “Yep. Steam like East 17″
And so, in keeping with our life as one long musical, we now have a musical signature tune for any ironing session. Over to you Anthony Mortimer…….
Right – it’s done. As I wrote in the previous blog, I was going to make a formal proposal to the council that they meet the whole cost of Steven’s care package through direct payments, thus cutting out the middle man nad those 52% profits they are currently making. This morning, I submitted the proposal and now I sit back and wait for the shit to hit the fan.
In my introduction, I wrote the following:
“I wish to point out that my sole aim in making this proposal is to try and secure Steven’s care package in its present form. For some time, Steven is the calmest and less anxious that I can ever remember. I put that down to three things (Obviously that is down to Steven being able to manage his anxiety so much better for the purpose of this proposal I am focusing on the external sources): Firstly, he has quickly settled in his new home and is enjoying increased contact with his extended family that I know means a lot to him. Secondly, he has a team of support workers working with him who understand him and relate well to him and have become experts at spotting signs of anxiety and know how to work with this. Thirdly, Steven is doing things in his life that he enjoys and give him a quality and meaning and sense of fulfilment to his life. I do not want to jeopardise any of those things – hence this report.”
It has struck me that what I am proposing is the very essence of Personalisation and yet in doing so, it has led me into very murky waters. I’ve had dire warnings since the “Personalisation vs Profits” post. Warnings that the companies might sue me for loss of business, for stealing their staff. Also warnings that the council might not be too chuffed with my proposal because they will lose their commissioning fees and bonuses. More examples really that there are many people with their fingers in the care pie. And whilst all these people take their huge slices of the pie, Steven gets blamed for having a large pie.
It’s also struck me that isn’t just a Steven Neary story. I can’t just present it as a Steven Neary story because it will just look like that moaning Dad again. Surely this must affect every person receiving a care budget that consists of commissioned services from external companies. Please contact me if you have similar examples of companies providing your family member’s support and making massive profits out of them. I do believe this is a national scandal and I’d like the story to have more traction but I need some more input before taking this further.
I wonder if the people who designed Personalisation realised that so many people would be pissed off if it was carried out in its purest form. To really have choice – to really have control – that means people giving up control and losing big pots of money in the process.
Anyways, I’ll keep you posted. I’m sure I’m going to get a lot of resistance to my proposal but nobody can really argue with the basic premise – how to secure a vulnerable person’s care and support and give them real choice and independence, in the most cost efficient way. Let’s see if the powers that be can put their money where their personalisation mouth is. If they can, wouldn’t that be absolutely fantastic?