I 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.
Who 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.
When 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.
Finally, 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.
I 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.
I 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.
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.