The Last Lap And The Car Wash

dylan meltI think this might be the last lap. At least I hope so: I’m not sure I have any reserves left for what has been a two year marathon. Since Dylan left school it has been a frustrating time of dead ends and disappointments. I have coped this far but am exhausted; if the finishing post moves one more time I doubt I could manage another lap.

I’ve been enjoying writing some general pieces about living with autism recently. Such reflections keep my eyes on the skies instead of on the grubbing detail of the road. With things in the balance this week, however, I thought it a good time to record what is hopefully the last bit of the circuit. Who knows whether these reflections will indeed turn out to be my log from the home strait but hopefully they will be illuminating.

Replay

2014-08-05 17.24.48If you’ve been following Dylan’s story then you might recall that my original battle, after he left school, was to secure continuing education. Dylan had been happy at school and was a settled young man, calm and with no ‘behaviours’ other than a liking for letting off fire extinguishers and smashing light bulbs. Initially Dylan wasn’t provided with any post-19 education and the social care funding he was offered for day care wasn’t sufficient to cover more than three days a week. When I won a legal challenge against my local council, Dylan was given a patchwork of provision while an appropriate education setting was developed in the city where we live.

For the year after he left school Dylan appeared to cope with part-time care which lacked consistency and routine and which wasn’t autism-specific. I reduced my working hours so that I could support Dylan as much as possible. It was messy and difficult. I felt stressed from one day to the next, wondering how I would juggle different settings and collection times and key workers. So it’s not surprising, really, that by the end of that first year Dylan started to show signs of distress.

The ‘challenging behaviours’ started last June. Some of my posts in the last year have described my search for explanations and answers. With incidents happening daily I took Dylan for neurological and psychological investigation, attended intensive support services, removed sugar from his diet, banned films with ‘separation narratives’ and asked for help from the ‘sex nurse’ (she probably has a different title but that’s how I recorded appointments with her in my diary). All these roads, it turned out, led to what was likely to be anxiety: the best we could do was increase the structure and consistency in Dylan’s care and adjust his activities.

In the last 12 months I have moved from utter disbelief at the changes in Dylan to a realisation that if you are severely autistic with severe learning disabilities and very few strategies for communication, and if your life changes profoundly so that things which you rely on to keep you comfortable – structure, routine, a calm environment and familiar people – suddenly disappear (as happened when Dylan left school) – well, it isn’t surprising is it? Anxiety can provoke feelings of frustration and anger in any of us. In the context of Dylan’s disabilities, his anxiety must some days feel scary indeed.

U-turns, false starts and golden gates

2014-08-05 18.44.12Unfortunately for Dylan the changes in his behaviour triggered further changes. Although one care setting has provided on-going support, other providers (including Dylan’s respite setting) felt unable to, given the changes in Dylan’s behaviour. Following a separate battle for funding, I had finally secured health care support for Dylan; the challenge, however, was to identify a setting with the necessary expertise to care for him.

A number of my recent posts have described the agony and confusion of trying to choose somewhere to live for an adult with Dylan’s profile of need. There are few such settings. Where they exist they are rarely local. Because of their specification (generous space, adapted buildings, small groups, high staff ratios and individualised programmes) they tend to be expensive. Factoring in economic and practical considerations as well as the desire to keep Dylan nearby, it is not surprising that finding somewhere for Dylan would be so difficult.

And then there are the curved balls that can come spinning. I have described elsewhere the way I pulled a u-turn when I lost my confidence (and my bearings) for a setting which Dylan was due to move into after Christmas. It was brave but possibly foolhardy, I was told, to pull out of a perfectly good placement. So I was relieved to quickly find a replacement which seemed just as good and was closer to home. As I recorded subsequently, however, the plan for Dylan to move there after Easter had to be abandoned following a safeguarding issue. I had let myself believe in that placement; getting a phone call to say we would have to abandon felt like a false start (or finish).

I hardly dare write that I think I can finally see Golden Gates glinting up ahead. Like other writers I observe the rule of not talking about a poem until I’ve written it in case I lose the magic. Perhaps I’ll apply the same rule to Golden Gates so as not to break the spell. Besides, even if there is a gilded tomorrow, today there is still this view from the road.

The road

2014-08-06 16.46.52It’s not an easy road to be on if you are in crisis. Even when a setting has been identified the process of assessment and transition takes time. Something that has made these months particularly hard is the loss of Dylan’s respite. At the point at which I was in need of more support I got less. In fact I got nothing. I have written elsewhere about the contribution which respite plays to the lives of carers; having been without it for nearly six months I can confirm this support is vital.

My last night off was 18th December. Since then I have been on duty every weekday from 4pm to 9am and every weekend from 4pm on Friday to 9am on Monday. I have not had a break during this time; I have not been able to go out or even, given Dylan’s anxiety, to have visitors. This period, of course, includes Christmas and other public holidays and celebrations. As well as having an impact on my ability to work (during this time I have had to reduce my hours and resign a management role) I have been obliged to turn down opportunities to perform at events (as a poet) and to attend social activities.

I don’t mean to sound complaining. I’m not. I accept all of the above as the price of caring for someone who is my responsibility and my world. But to be a carer I need to stay well and healthy which means being able to rest and recuperate. I haven’t been able to do that; I’ve found that trying to rest during the day is no replacement for the benefits which come from having a break from caring overnight. For me they are these: not having to bathe and put Dylan to bed in the evening then stay awake until he is settled; not having to be alert through the night in case I am needed; not having to get up early enough to juggle my own self care with waking Dylan in time to bathe and shave [I often skip this stage in truth – I have a lot of sympathy with men on this one] and dress and feed him before it is time for his bus; not having to pace the house waiting for the bus and willing it to arrive in time for me to get to work.

Gardens, mud and dirt

dylanmelt2Dylan’s anxiety has been acute in the last few weeks and his aggressive behaviour has escalated. I have gone on trying to identify triggers but can’t always predict or head off incidents. I am no match for Dylan physically (21 and more than six foot tall, fit and strong) and after being hurt on a number of occasions I have learned to prioritise keeping myself safe. Recently, I have spent a lot of time in the garden where I go, now, to sit and wait until Dylan has calmed down. Sometimes it is five minutes, sometimes 50. Sometimes I am barefoot, sometimes better prepared. Sometimes it is fine, sometimes raining. Sometimes it is light, sometimes dark. Always I wait with my heart in my mouth for it to be over, praying that Dylan doesn’t hurt himself.

I am better at keeping myself safe than I was; I have learned to make judgements about when I can intervene safely and when I can’t. I have agreed strategies with Dylan’s social worker such as keeping my mobile phone with me and when to call for help (I haven’t so far). Clearly it would be better if Dylan could be helped not to feel so frustrated but for that he needs specialist care and support in an environment with the space he needs. I don’t believe, however, that there is a magic formula which will eradicate Dylan’s anxiety; I suspect he may be prone to it through these difficult early adult years. And because life with Dylan can be so unpredictable (and I must stress that it isn’t like this all the time – we have wonderful joy-filled days too) what he especially needs is more than me.

Dylan and I have always had an active life and I’ve continued these activities at weekends. He needs this: he’s a fit and active young man. With incidents happening increasingly often, however, I have recently found myself in compromising situations where I have been hurt or Dylan is at risk (sometimes both) away from home, in vulnerable locations or public space. Three times I have fallen in the last few weeks when trying to catch or restrain Dylan (without adequate training) in order to keep him safe. One incident a couple of weeks ago left me terrified by the combination of Dylan in violent meltdown, an unleashed dog (with slow-to-act owner), bleeding ear (mine) and fast approaching road.

I’m not sure why Dylan was out of control that day; we were in a familiar valley which we have walked many times. Dylan loves to be near water but it can sometimes lead him into a trance-like state which in turn triggers a violent outburst. Thisย  may have been what happened on that Sunday afternoon walk. It was a wake-up call and a turning point for me; I managed to get Dylan back to the car, albeit muddy and bloody, and the next morning I phoned his social worker.

The car wash

33524547-car-wash-with-soapIt took quite a lot for me to admit that I couldn’t keep Dylan safe anymore. Some people have suggested that I might get more support with Dylan if I didn’t appear to cope so well. You appear too competent for your own good, one friend told me. Well I was perfectly happy to admit, now, that I wasn’t. I couldn’t manage weekends alone anymore, I told Dylan’s social worker. Neither Dylan nor I were safe. For Dylan’s well-being and my own safety, I said, if I can’t access some support at weekends then I shall just drive away. I shall leave. I could hardly believe what I heard my mouth say. I wasn’t even aware that I had thought it. I certainly wasn’t sure I could ever do it. But in the silence that followed my announcement, I thought that this must be how breaking point feels.

We explored various options in the aftermath of that incident but in the timescales it wasn’t possible to put together an acceptable alternative for the following weekend (i.e. last weekend). In the end, therefore, I decided to support Dylan myself but agreed that I wouldn’tย  access the community with him and that I would put some simple procedures in place to stay safe at home. I approached last weekend with anxiety and trepidation. Fortunately the weather wasn’t remarkable – it’s easier to stay home, somehow, when it’s raining – and I hadn’t lost my creativity. Racking my head for an idea which bent but didn’t break the rules, I decided to take Dylan for a joy ride in the country and then to the car wash. The car wash would, I hoped, be enough to give Dylan the pleasure of running water but without the danger; it was what I judged a ‘contained risk’. Happily, Dylan seemed calm enough as he watched the water cascading down his rear window…

Postscript

I heard yesterday that some emergency respite for Dylan has been approved for this weekend. Dylan hasn’t had any since December mainly because we have struggled to find a provider who felt able to support Dylan given his needs. I’m pleased to say that the place I refer to in this post as Golden Gates are happy to have him. Dylan already knows the setting and the staff and residents and will have a lovely time I’m sure. I’m hoping that although this is emergency respite, it will be the start of what in time becomes transition. May the finishing post stay still long enough for me to guide Dylan through ๐Ÿ™‚

Images:

The photographs of fire hydrants and of Dylan curled on one of our local paths were taken by me. They are images I particularly associate with anxiety and meltdown.

18 thoughts on “The Last Lap And The Car Wash

  1. Elizabeth, you are courageous and independent and intellectual, but you deserve more than blogging to help you. There are masses of us you could speak to by phone, just for release, if you want to. Every good wish for the transition to work.

    Liked by 1 person

  2. My heart goes out to you. I feel this is too difficult: please don’t stretch yourself too thin. It feels too difficult by far. Love is not always enough, it just can’t be.

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    • Thank you Nell – and for the reblog. It’s kind of you to be concerned – I know that you understand the pressures of caring. I think I have been stretched but I feel as if I am closer to getting some support. I have just dropped Dylan off and he seemed OK – a bit on edge perhaps but happy to wave me bye bye. Hopefully we will both be OK this weekend and it will lead to something more regular. I’m looking forward to a weekend in the garden (by choice) with poems ๐Ÿ™‚

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  3. I really hope with all my heart and soul that you have some peace and rest this weekend, I like the sound of a weekend in the garden with poems. I hope that is where you are right now xx

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  4. When you put it all down like this Liz – the past two years – it is clearly too much for one person to deal with and sounds increasingly like being a prisoner in your own home. Just a little respite goes such a long way and you make this point well. And Dylan needs this too.
    I’m feeling stupid because I didn’t get the significance of the carwash – if running water is a trigger point which can lead to violence. Or is running water soothing and have I misunderstood? Whatever the thinking, your creativity is an inspiration for every one who reads your blog. I hope both you and Dylan have enjoyed your weekends.

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    • Oh Caroline hello – lovely to hear from you. You’re right – condensing the two years like that does draw out things I’ve grown accustomed to, like not being able to get out. Writing is so useful that way – how it helps us see things more clearly. About the car wash. No – you’re not being stupid – I was rushing to finish the piece before the weekend so glossed the end a bit ๐Ÿ™‚ I might go back and make it clearer – thanks for pointing it out. Running water is one of Dylan’s particular interests – he would sit and watch for hours. However, it is like a zone which he goes into and can’t get back from – eventually the water stops being therapeutic in a good way and leads to frantic bouncing/hurling himself around/running wildly which then sometimes trips to a physical attack. I think Phoebe Caldwell (my new guru) writes about this in her book – is it called ‘fragmentation’? Anyway, it’s a sort of dual relationship for Dylan. I had this idea that the car wash would be contained enough to give Dylan some of the benefits but without the dangers (if that makes sense). It was like a high wire act – or a benign shot. Lx p.s. D’s weekend was positive apparently – I couldn’t settle on Saturday (fretting and rattling around) but had a better day today.

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  5. As I was saying I have a nephew who is now nearly 40 who has cerebral palsy and Autism. When he moved into adult care it was an absolute nightmare for his parents. Since then he has been sectioned a couple of times and has periods of psychosis which obviously affect his ability to do day to day tasks. Your patience with Dylan is admireable and you must be exhausted: let’s hope that things get sorted soon and we will see you back at Uni soon. I will be holding your situation in my prayers over the next few weeks.

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    • Hello Penny – it’s nice to hear from you. I didn’t realise you had personal experience though did think you might have had contact with people in similar circumstances. The situation you describe is very interesting to me. Psychosis is something that has been discussed in relation to Dylan but it is very hard to be sure what is happening. I’m aware that it is not uncommon for this to develop in the early 20s however so I have to keep an open mind. I know very few people who report a positive transition to adult care, sadly. It’s hard to know what can be done though. Thank you for adding us to your prayers, Penny – this at least is something we can do ๐Ÿ™‚

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      • I know what it is like and hope very much you reach the finishing post but the race ( which we parents cannot win) goes on and on , and the finishing posts are too often shifted. We are experiencing our race too, with my son being given notice to leave his present happy care home where he has been for 11 years ,since the place is deemed unviable by its for profit owners/care providers. Hopefully , combined family efforts have found another placement and now all that hangs on the local authority being willing to fund him. I have read much of what you have done with and for Dylan and it is amazing. I understand the exhaustion and ,I guess, the sleepless and/or disturbed nights as one worries. We may be lucky with our Timothy and I wish you the same, though it is quite wrong that there should be this lottery around care. Best wishes.. and more.

        Michael

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      • hello Michael – good to hear from you. I can’t imagine how it must be for T to be facing such upheaval after so many years settled. It reminds me that, as you rightly note, there is no end point in any of this. Well fingers crossed that both our sons get the funding; I’m in the same position, waiting to hear whether the local authority approve a full-time place for Dylan at the place where he stayed for respite last weekend. It’s an NAS setting which Dylan already knows as it was previously linked to his school provision – since he left it has established itself as a small home for adults and one place has come available which I am hoping has Dylan’s name on it. I should find out very soon – this week perhaps. While I would be relieved for D the system is clearly not working and I’ve no doubt the future will continue to be an anxious place. Well, fingers crossed for some good news anyway… Liz

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  6. Liz – I’m struggling for the words to express fully what I’d like to say – everything I start to type seems so inadequate. You have achieved so much, and travelled so far on a hard, hard, gruelling road. I want you to know that I’m thinking of you and Dylan – and I’m so, so hoping that ‘Golden Gates’ will soon open into a new era where, finding release from an overload of stress and exhaustion, those joy-filled days you and Dylan have done so brilliantly to create and share and treasure together, can be given the space to expand and grow…

    I hope too that you have managed to find the mind-space that is so crucial to keeping well. I hope you have been able to find some essential, deep-stillness of poetry-time to revive energy and creativity, and keep your core self still looking towards the skies…

    Melanie x

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    • Melanie it is lovely to hear from you. Thank you for your kind and understanding words – they mean a lot. I have actually been writing a little (poetry) through all of this – I am always amazed at how we can find our deep selves at times of struggle. Not that I’d court it of course ๐Ÿ™‚ I hope life goes well with you and your family – it is always a treat when you post something so I look forward to more. Thank you for reading. Liz x

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