Staying Alive: autism and risk

risky flight 003In my last post I mentioned, as a postscript, that I had received ‘devastating news’ about Dylan’s proposed placement at a house I found following a moment of ‘magical thinking’. A visit to the house had gone well, as had a home assessment, and I had no reason to expect any hitches with Dylan’s referral. I was optimistic that we might be able to start transition during the Easter break so booked leave from work and cleared my diary. Imagine my alarm when, on the run-up to the holiday, I received an email to say there was a problem and that we would need to consider other options.

I felt broken: after the false hopes and halted starts, the dead ends and aborted plans, here we were again. I could have cried. Oddly, my first concern was short term rather than long. I have been managing without short breaks since mid-December when Dylan’s provider decided they could no longer support him. I struggled to find a replacement setting and in the end gave up, thinking that as Dylan was set to move into a residential placement it would be confusing to introduce somewhere new for such a short period. I would manage without, I said.

It has been hard, though, managing without. I used to look forward to my night ‘off’. I have missed being able to work late, swim, go to the cinema or out for a meal once a week. I have missed having the house to myself overnight and being able to go to bed when I want and go out in the morning without having to bathe and dress and feed Dylan first. I hadn’t realised just how much I had missed this, and how in need of a night off I was, until I read that email. So while I felt weary at the thought of continuing the search for residential provision, it was the realisation that there would be no early solution to my need for a night off which caused the devastation.

Evaluating risk

risky flight 009Still, I didn’t cry. I was stoical, this time, not out of heroism or resignation but because the setback wasn’t due to funding problems but rather to ‘concerns about standards of care’. This puts an entirely different complexion on disappointment; parents may be in need of a night off, and young adults in need of a home, but not enough to compromise on safety. So the part of me which was disappointed at the news was outweighed by the part which was relieved. Happily Dylan had not been there; he was still safe with me.

But after this disappointment and relief the news settled down differently. I couldn’t make any judgements about the situation, I decided, without more information. Whatever had or had not happened, I reflected, may or may not have been a risk to Dylan had he been living there. All sorts of things get tangled up in safeguarding policy; clearly (oh so clearly) we need the legislation, but we also need to understand its application. So although my first reaction was to abandon all thoughts of the house as a future placement for Dylan, I later found myself drawing comparisons (albeit tangential) with my own experience.

I recently prepared two groups of students for their annual school placement. The administrative team responsible for sourcing and supporting these placements do a tremendous job; many of our partnership schools have been with us for decades and only rarely do we ‘lose’ an organisation. We are, however, obliged to stop placing students at a school if it goes into ‘Special Measures’ as a result of an unsatisfactory inspection. There are a variety of reasons for a school being placed in Special Measures, not all of which are relevant to the quality of support a school can provide to students. It has been suggested, in fact, that it is in schools facing the toughest challenges that the best support can sometimes be found.

This was certainly my experience in the 1980s when I was training to teach. One of my lecturers planted the idea that I might like to do my block placement in a local school with a reputation for being ‘difficult’; if i could manage that, he said, I could handle anything. I liked the idea so (to my peer group’s surprise) I requested the school. What I discovered through this was that I could cope with the challenge thanks to the tremendous support I received from staff. Later I would reflect that if such collegiality and support were important to me, organisations judged ‘satisfactory’ (especially schools which were coasting) might be best avoided.

While I wouldn’t want to suggest a direct comparison between schools and residential homes, what these reflections reminded me of was the need not to write-off an organisation too hastily. Is root and branch change required? I asked Dylan’s social worker when I’d reflected on the situation overnight. Or was it an isolated incident? Would whatever is wrong make Dylan directly vulnerable? And how long will it take to put right? A week? Six months? Or years?

Transforming risk

risky flight 005These questions matter because it will take months for me to start over; the process of identifying a provider, visiting, arranging assessments, submitting reports, getting the paperwork approved and planning for transition is time-consuming. Perhaps, I suggested to Dylan’s social worker, it would take as long to find an alternative as to wait while any issues were addressed? Especially as an alternative provider would almost certainly mean Dylan moving further away from home (something I had just lost my nerve about in relation to a previous provider). Perhaps you’d consider reinstating that placement? Dylan’s social worker suggested. My magical thinking, it seemed, was being magicked away.

Wouldn’t it better to work with the setting rather than walk away? I asked. And might it not be the case that a place is safest when a ‘problem’ has been identified? My questions reminded me of an incident years before, related not to social care or education but to air travel. It was 1987 and I was flying to Tel-Aviv with a boyfriend. Postgraduate students at the time, we had managed to save enough money from our grants and jobs to fund a trip to the Middle East. We had selected dates to fit in with our studies and the temperature but it had escaped our notice that we were travelling on the eve of Rosh Hashanah; we arrived at the airport to find our flight busy with people heading home for the holiday.

My boyfriend was not a seasoned traveller; this would be his first flight (apart from the plane he came to England on as a child) and he was nervous. Other people waiting for the flight that evening were nervous too; so nervous, in fact, that one of them identified my boyfriend to security police as ‘behaving suspiciously’. My boyfriend was pulled out of the Departure Lounge, along with two other passengers, and  interrogated for several hours (as the only link between the ‘suspects’ was skin colour we later reflected this was a more likely explanation than behaviour). At some point that evening I was also taken and questioned; I had no idea what was going on or why they had taken my boyfriend so didn’t realise their only interest in me was whether my answers would corroborate his (which they did).

As well as being a horrible experience the incident caused anxiety. When the ‘suspicious’ passengers were finally released and the plane cleared for boarding I was reluctant to travel. I had no idea what information they were acting on, I told one of the special officers, but if there was a threat to the plane then one thing I knew for sure was that they’d questioned the wrong man: my boyfriend was no terrorist. How exactly, I asked him, do you expect me to get on that plane now? Lady, he replied, this will be the safest plane out of Heathrow tonight. Every item of luggage in the Hold had, apparently, been checked: they were confident that there was no threat. This lesson has stayed with me; the identification of risk can sometimes create a place of safety. At least every metaphorical item of luggage in the care home’s Hold is being checked right now, I told myself.

Staying alive

risky flight 008So for now the move is off. I’m on pause. Holding on. I’m not sure whether I will wait or look for somewhere else for Dylan. What is clear though is that I need a break so that I can rest and restore my energy before the long haul. Because whatever happens, it will take a while…

I tell myself that at least Dylan doesn’t have to suffer the ups and downs of the journey but that isn’t true; he picks up on my anxiety I’m sure. So after a more settled period there have been a few incidents this week. One evening my daughter intervened to ensure my safety during a particularly challenging episode. Afterwards, in response to my description of the incident, a friend urged: there is a safeguarding issue here – you are a vulnerable adult. I had never considered this; that the concept of ‘safeguarding’ could be applied in my interests as well as Dylan’s. Should I report my situation to the Care Quality Commission perhaps? Tell them that I am concerned about my ability to deal adequately with challenging behaviour? That I am not sure I can ensure the safety of the adult in my care and of myself and daughter? Perhaps they could come and inspect me? Check the baggage in my Hold?

Social care in England is in crisis with a shortage of places for vulnerable adults and a lack of funding for the recruitment, training and retention of staff in those that exist. That creates risk. But it is also a risk to leave parents unsupported. I am relatively fortunate: I am fit, experienced and confident (mostly) when dealing with Dylan. But I am also weary and ageing. ‘We’re scared to die’ an acquaintance said to me recently, referring to he and his wife’s concern about leaving their adult son alone and unsupported. I recognised his anxiety and later in the week mentioned it to another adult carer. She nodded. Yes, she said. I am completely risk-averse now. I need to stay alive.


Images:

The photos were taken in 1987 on our return flight to London from Cairo. They include views of Cairo, the French Alps, Greece and Schipol airport. The journey was quiet and uneventful.

20 thoughts on “Staying Alive: autism and risk

  1. Really hope that this matter can be sorted quickly for you. Also hope that you are still asking for respite in any other way – keep banging on the doors, don’t wait until it’s past crisis point x

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    • Thank you Steph – that is good advice. I spent yesterday on the phone to respite providers and made exactly that point about not wanting to wait for a crisis – one woman I was speaking to assumed I meant a crisis with Dylan and was a little shocked when I interrupted her to say ‘no, I meant I don’t want to wait until I am in crisis’ ! 🙂 Thanks for reading and being supportive, Liz

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  2. Yeah, staying alive is the point here, Liz. Keep going, and the future will bring you many good surprises, I am sure. Best regards.

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  3. “Social care in England is in crisis with a shortage of places for vulnerable adults and a lack of funding for the recruitment, training and retention of staff in those that exist. That creates risk. But it is also a risk to leave parents unsupported. I am relatively fortunate: I am fit, experienced and confident (mostly) when dealing with Dylan. But I am also weary and ageing. ‘We’re scared to die’ an acquaintance said to me recently, referring to he and his wife’s concern about leaving their adult son alone and unsupported. I recognised his anxiety and later in the week mentioned it to another adult carer. She nodded. Yes, she said. I am completely risk-averse now. I need to stay alive.”

    The NAS and Autism Europe need to be more pro active on the ‘scared to die’ front !

    The Surrey branch conference in Guildford on October 3 (Timothy’s birthday) and the projected seminar on adults would be a good opportunity to discuss terminal illnesses.end of life plans, health passports, DNR, consent and capacity, absence of human rights re ADRT’s , …and the MCA.

    Michael Geoffrey Baron mickbaron1@tiscali.co.uk

    >

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    • Nice to hear from you Michael and thank you for your comment. I agree that this is so needed and so pressing. I think there are many older parents who have these fears about the future – not just parents of children with ASC but parents of other vulnerable adults too. It is a terrible thing to not feel able to accept and embrace the end of a life. It is good to hear that the NAS are doing something but, as ever, more is needed.

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  4. thank you for writing this…there IS no one here that asks nor sees that I am safe from the persons I care for, and when trying to mention it, i have been asked if i need mental health care for my anxiety, to which I could no longer hold my tongue…and blurted…NO! I need someone to listen to me and to realize that I have been trying to hold in that my son’s meltdowns are now mansized and that he has left deep bruises on my legs which a physical therapist noted and reinjured my shoulder. The response was..oh, did you call the police. Sigh.

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    • Hello Elisa – thanks for reading and for your comment. It’s interesting to hear that you face similar difficulties in the US. As you say, a mansized meltdown is a challenge of an entirely different order for a parent. There are no adequate systems for us to access at times of crisis – like you I have been advised to call the police. Deep sigh…

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      • i want to be sarcastic now, which means I am not coping well, however here it is: OMG!!! I had NO idea that all of this time autism spectrum could be cured by jail and a criminal record!

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  5. Hello, I haven’t been commenting but I have been reading, I always read your posts. I get quite tearful sometimes and lose any semblance of objectivity. I am always moved by what you write and wish you and Dylan well. I loved the post about the birthday party and I worry terribly for you, which is not helpful and send magical thinking thoughts about good outcomes and lots of love xx Joanna

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    • Thank you! That is very nice of you. I’m also very glad I stumbled across Last Post – I think via a reference to it by Jack, whose blog I follow. A book about rhetorical gesture as I recall by Siddons? I wrote it down on my reading ‘wish list’ – haven’t got around to it yet but am enjoying your blog 🙂

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  6. Hi Liz
    Your post reminds me of a TV programme several years ago that had quite an impact on me. It addressed the issue of children’s playgrounds and the perceived need for springier surfaces. However, the programme discovered that these ‘safer’ surfaces had actually led to more accidents in playgrounds rather than fewer. The explanation for this hinged around the idea of risk compensation theory and the idea that the safer somewhere looks, the more risks people take in that environment. Thus, particularly dangerous stretches of road have fewer accidents on them because we all take more care when dangers are apparent to us. I love the counter-intuitive but public services rarely have the imagination to run with it.
    On that basis, you are quite right to stick with this residential placement or at least avoid somewhere that has been under less scrutiny. I hope that in the meantime you can get some short term support so we have a night out soon.

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    • I love this association! I think I have heard about that effect too. It is a really good parallel Caroline. When I asked for more information last week I was told that the setting had advertised themselves as supporting young people with ‘challenging behaviour’ but, it seems, there was an incident which has led to questions about their ability to manage this. Following your playground link, I would say that maybe if a setting has the label ‘challenging behaviour’ this might encourage placement agencies to become lazier about specifying need. Young people with high need care still need thorough and realistic assessments and the settings which want to work with these young people need to be properly resourced. As far as I’m concerned, if there was a breakdown in care it is almost certainly because that young person wasn’t being properly supported by the resources they needed (i.e. staffing ratios and staff training). aarggh. It makes me cross. I agree about sticking with – and I would. But I have, by chance, seen a couple of other possible settings since this happened. I want to take these forward as possibilities but I’m afraid I seem to be at another road block for some reason or other – no word whatsoever from professionals last week. On my list of things to do is to start making big noise again tomorrow, 9am. I’m looking forward to that night out, x

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