And Finally

more garden in may 009I am relieved to report that my request for a place at a National Autistic Society home for Dylan cleared the final hurdle last week and was approved. I’m not sure the implications of this have sunk in yet but it is what I have been advocating for and I am pleased to have achieved this for Dylan at last.

It is two years since I set up this blog. I started it because I was dismayed by the lack of options for Dylan when he left school. Initially my concern was that he wasn’t allocated enough day care to enable me to get to work (which I needed to do as a single parent) but I soon realised the issue was not how many hours Dylan was or was not entitled to but the shortage of appropriate adult provision.

This blog records Dylan’s difficult transition to the adult sector and its impact on us both. My posts during the first year described my attempts to secure education provision for Dylan, having established his entitlement to this through a legal action against my Local Authority. While I waited for a suitable post-19 setting to be developed, Dylan attended two different part-time placements during the week (one social care and one education-funded) and was cared for some of the time by me. That year was confusing and chaotic. The placements weren’t joined up and there was no continuity of care for Dylan. Leaving school was always going to be a difficult transition for Dylan but replacing a full time setting with a mixture of part-time care escalated the anxiety.

garden june 004Who knows to what extent this hotchpotch provision triggered the behaviours which emerged in Dylan at the end of that first year. Since then, my posts have focused on my attempts to understand Dylan’s ‘challenging behaviour’. My search for explanations has focused on physiological as well as environmental factors but the consensus is that the underlying cause is psychological. It seemed to help Dylan when it was agreed he could attend his day centre full time rather than continue with the miscellany of provision he had been accessing. Even with adjustments to his care, however, it was clear that Dylan needed more support than previously in order to stay safe and to access the community.

Within a year of leaving school, therefore, Dylan’s profile and the priorities for his care had shifted from continuing education to continuing health. Some of my posts during the last year describe my attempts to secure health sector funding so that Dylan’s needs could be met. Perhaps my earlier battle for education funding gave me the confidence to challenge an initial decision against health funding for Dylan but I would urge any parent in a similar position to do the same; having to appeal decisions seems to be increasingly standard so don’t expect the first judgement to be in your favour. When I eventually secured health funding for Dylan, more appropriate options for him opened up.

garden june 003When Dylan left his National Autistic Society school in the summer of 2013 a residential home  was being established for school leavers who needed higher levels of care. Dylan was familiar with the setting as he had stayed there overnight occasionally (it was previously used for respite for children attending the school). Some of his peers would be moving into the home and Dylan knew some of the staff too. Naturally I requested a placement for Dylan, thinking it would offer a seamless transition to an appropriate setting.

My request was turned down two years ago, partly because Dylan didn’t have health funding at the time but also because my Local Authority’s policy is to place adults in the community, rather than residential care, and not to fund placements out of city. My request for Dylan to be allocated a place at the NAS home failed against both criteria. This rigid approach is, I would argue, short-sighted. While I understand the ideology (post-Winterbourne) it remains the case that for some young people a specialised residential placement is appropriate. Dylan, for example, needs the customised living and outdoor space which residential care offers as well as access to a team of professionals rather than the single care workers who typically support adults in the community.

WP_20150712_18_21_50_ProFinally, after months of crisis and distress, Dylan’s need for such provision has been accepted; two years (almost to the day) since he left school, the NAS home I originally requested is the one that has now been approved. Although the home lies just beyond the city edge, I would have happily accepted somewhere within the authority had anywhere been suitable; indeed I pulled out of another out-of-city placement partly because I was reluctant for Dylan to leave his community. When I tried to identify a local residential placement, however, there was nothing adequate or appropriately specialised. If local authorities cannot make suitable provision for autistic adults with high care needs, they are not in a position to refuse to fund specialist placements out of city (or borough).

Because the setting that has been approved is a familiar environment for Dylan, transition so far has seemed relatively comfortable  (although I have been warned that behaviours are likely to increase initially). The plan for supporting Dylan into his new home is the best it could be; although the placement started this week, Dylan will be jointly supported by staff from his day centre and residential home and will continue to live partly with me for the first month. A holiday planned for August will mark a natural end to this initial transition period, after which the aim is that Dylan will be based at his new home.

more garden in may 018I know that there will be challenges ahead for us both. Although I was relieved to receive the news I have felt utterly exhausted since and have had moments of terrible doubt and anxiety. I tell myself this is surely natural. On Monday night – the first day of Dylan’s placement – he stayed overnight at his new home so I could fulfil a long-standing poetry commitment. I wasn’t sure this was what I needed on the day as I felt tired and emotional. On reflection, however, it was an appropriate way to mark the start of this next phase of our lives, living more independently of each other. The poetry reading was also useful in distracting me from my anxiety and preoccupation with the new arrangement; better than sitting at home, fretting.

A friend, recognising something of what I was going through and with the wisdom of already having waved goodbye to a grown-up son (though not in the context of autism), sent me a poem yesterday. The piece, Walking Away by C. Day Lewis, ends like this:

I have had worse partings, but none that so
Gnaws at my mind still. Perhaps it is roughly
Saying what God alone could perfectly show –
How selfhood begins with a walking away,
And love is proved in the letting go.

garden june 008I can see that even with the extra challenges confronting a parent of a disabled child the ‘letting go’ still has to be faced and embraced. Our life together is changing, I tell myself, not ending.  Although like Dylan I will live with autism forever,  I will no longer be living with it in the same way. Over the next few months, therefore, this blog will change and in due course come to an end. It has served its original purpose and Dylan and I have grown beyond its focus.

My plan is to keep the blog going, however, while I learn to let go. I have in mind to use it as a diary space where I can record my thoughts and feelings in the first 100 days of living without autism. I’ll start counting when Dylan moves full time into his new home after our August holiday. Before that, however, I have two more posts to write. One is on a difficult subject which I’ve been meaning to confront since I set the blog up; I have been ducking it but cannot any longer. The other post will offer some reflections on what I have learned from this blog and the ways in which it has been a positive force for me (and I hope Dylan) in the last couple of years.

And finally, I want to thank you (yes, you) for reading, for your encouragement, and for your friendship and support.

*
Images:
The photographs were taken in my backyard in May and June this year. I have never been a gardener and I don’t have much outside space but recently I have spent more time in my yard and found it therapeutic. I have come to think of this as a safe space where I can let go of some of the anxieties of being a carer. I think I will always associate it with this period of my life with Dylan.

22 thoughts on “And Finally

  1. This is a great new (about the result), and a bad new (about changes in the blog)… I don’t know how to react to it… But I wish you and Dylan the best!

    Eder

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    • Thank you Eder! I’m not really sure how the blog will change when D moves out but I’m sure I’ll still have things to say and hopefully it’ll be interesting enough for you to stick around! Thank you, as ever, for reading, Liz

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  2. I think your blog will be one many parents of children with autism who are or will be going through separation as you are will be reading with great interest

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    • Thank you Donna – that is exactly what I want to do I think. Separation is hard under any circumstances and I think there are particular issues in this situation. I’m hoping that writing about the challenges helps me to cope with them! If some of my reflections resonate with other parents – well that would be great. I’d certainly find it helpful to hear from other parents who’ve already gone through this. Thank you for reading 🙂

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  3. That’s wonderful, Liz! I understand that you must have a great tangle of mixed feelings. This is a seminal moment for you, perhaps even one that involves an identity shift – a new way of living. Best of luck. I enjoy your blog and hope we can stay in touch.
    best regards,
    Jack

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    • Thank you Jack! I love the way your blog shape shifts between your brother and your art and I’m hoping my blog can be a bit fluid like that as I adjust to a new way of living. I am thinking it could take a while before Dylan and I have settled into our new lives – so I don’t think there will be a sudden blogend. And I will go on reading your blog, that’s for sure 🙂 Liz

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      • I was thinking that perhaps I should have closed out my blog after the bulk of my posts about Mike were concluded and start a new chapter, like you are doing. I’m trying to tie everything together though, with a modicum of success, but it still seems a bit fractured to me. I do like your term ‘fluid’ though. ;>)
        Thank you for reading my blog these past few years. You are a good friend and I hope to continue read your posts in the future wherever they lead.
        Best regards,
        Jack

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      • I miss your posts about Mike. I love your current focus too though. Something I like about your blog is that everything is in one place so I know that Mike can pop up again at any time. So rather than feeling fractured I see it more as holistic. If you kept your posts about Mike in one place and your paintings somewhere else I think I would feel very divided 🙂 What I want to borrow from you is the short daily post – it’s a great discipline and captures those fleeting moments which can so easily be lost. I imagine that when Dylan moves out I would find that helpful. It will be the small daily things which trip me I suspect rather than the crashing epiphany. At the moment it all feels a bit like a phoney transition: Dylan is having a Saturday morning sleep-in as I type and all feels absolutely ordinary. I will take him back to his new home at some point this weekend, I tell myself 🙂 Have a lovely day Jack, L

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  4. Dear Liz, I read your blog not because I have an autistic child but because I find your blog inspiring. You show great courage and fortitude daily, and great sensitivity/compassion in trying to feel your way into the being/needs of another person who does not/cannot communicate verbally. I am also inspired by your flexibility of thinking, looking at things in so many different ways – trying to find ‘the key’ to understanding Dylan. i hope that once Dylan is secure in his new independent setting that you too will be able to flourish in new and different ways.

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    • Tom thank you so much for your good words and wishes. They are lovely things for me to hear. And thank you for following my blog – I have always enjoyed your comments. Liz

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  5. I’m so happy to hear the fabulous news! Change is scary, letting go is difficult, but that’s where the magic happens…when we step out of our comfort zones.

    Intrigued about your next two posts. Very.

    And dearest Liz…you are a writer. You will always have stories to tell and words to write. Now, where and how you do so may change or evolve, but that change can be exciting too.

    Excited for you and Dylan, and so happy to be your friend. -Christy

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    • Thank you Christy! As you know I’ve been massively inspired by your writing while I’ve been keeping this blog and one of the things I’ve learned from you (or should I say Anna!) recently is the possibility of change. So if I look up I can see you jogging down the road ahead of me and it is SO encouraging to have your example and your friendship. I love the idea that this is where the magic happens! Lxx

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  6. Well done Liz – and 17th July is Aidan’s birthday so is a special date for me and often seems to marks an end or a beginning, given its timing in the English school year. I think that it’s important to note that your blog reaches beyond understanding a son with autism. It has also shown me ways to think about the creative and ethical act of caring for anyone vulnerable. Many of your ideas resonate with me as I try and work out how to care for my 97 yr old – and more than bit eccentric – father and work with a care home as best I can. Experiencing a care home environment is a salient reminder that care facilities potentially await us all and it would be a good thing if we all engaged in thinking about the ways that care is organised, run and made accessible. (As I write this, my Dad has just rung me (again) raging at his remote control which won’t do what he wants it to do…..

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    • Caroline it’s lovely to hear from you – thanks for making time to read my blog! I’ve been thinking a lot about your new situation and, as you say, finding parallels in the process we are going through, albeit for different reasons and with loved ones at different points of their lives and with different needs. For your Dad the remote control is a focus of anxiety and of feeling unsettled. It’s still early days for me and Dylan but food is becoming the focus for us. I suppose with such a huge change it’s likely that a ‘site’ of struggle will emerge, where D and I (and you and your dad?) can locate or act out difficult feelings. I love your phrase ‘the creative and ethical act of caring’. The issues are so tricky and challenging we would make nonsense or mockery of ethics without thinking creatively. At the moment it is my own anxiety I have to be creative about, however, more than Dylan’s! Oh there’s another emerging issue which is that Dylan won’t accept leaving anything from home at the residential setting – it is beginning to look as if I will have to buy everything over again so Dylan has a duplicate life. But can you imagine! Clothes, books, DVDs, CDs, personal belongings – it is just not feasible! However, it is early days – and I should bear in mind that it took Dylan 7 weeks to sit down when I changed our sofa recently (imagine standing up to watch TV for 7 weeks!). I would love to swap practical ideas with you sometime soon!

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      • Good .At last. Today my 58 year old son from his care home following notice of closure. We have had had enormous luck which tends to prove that provision varies all over the UK, that LA’s and social workers are ipso facto competent and incompetent, that the NAS which I founded with a group of other parents in 1962 is both competent and incompetent, that inequality of service provision across the UK is as varied as it was in 1962 when subnormality hospitals and a few others were the main providers, that in some senses nothing has changed since 1962, that parents have to struggle to find the best care as they did then, that the word ‘profit’ has entered the vocabulary of care and the labels of diagnosis have changed as a vast capital and labour intensive industry has developed on the back of the crumbling welfare state. The whole apparatus of care -eth,ics and practice needs a new investigation and it may be that centralisation of funding is one answer to avoid the very evident post code lottery where one LA is relatively rich and the one next door poor.I could go on . It should have been unnecessary for you to struggle as you have. To that extent the parents of 1962 have failed,

        Michael Baron

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      • Michael, first let me say how very glad I am to hear that T has moved. At his age, and having been settled for so long elsewhere, I thought the move the potential stuff of nightmare. Of course it is a postcode lottery but it’s also due to your indefatigable work on his behalf (with the support of your family) that your son’s move has been so swift and well-starred. Here’s hoping it proves to be a home for life. I second everything you say in your comment on my piece. I am not celebrating. There is shadow as well as light, as you note. The work on Dylan’s behalf will not let up, only shift focus. There is no finishing post, just stagings. This really is a life journey, I am realising. It needs constant attention and focus, continuing vigilance. I do agree that root and branch change is required. I fear, however, that as the NHS creaks and strains the changes that will come will not serve Dylan or others with such need. Well, for now my very best to you and family. Thank you for reading Michael and for your good sense and support, Liz.

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  7. I should have written…. today we moved my 58 year old son from his care home to a potentially marvellous place in Surrey where the SCC have agreed to pay all the fees.

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  8. Pingback: Learning Through Dialogue: reflections on blogging (ii) | Living with Autism

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