If someone were to ask what single thing makes the most difference to my life without hesitation I would say respite. Well actually I might hesitate a bit but only over terminology: there has been a move in the last few years away from the term respite, which is felt to have negative connotations, in favour of short break.
Whatever we call it I’m very glad of it. For some years Dylan has spent one night a week and occasional weekends with a care provider. Recently I decided that it was time to trial a slightly longer period away from home. Last week, therefore, Dylan had five sleepovers while I had my first significant break from caring in 20 years. In this post I reflect on the value of short breaks for carers while in a linked post I consider some of the challenges involved in accessing short break provision.
What we mean when we talk about
respite short breaks
I didn’t know about this shift in terminology when my local Council awarded families with a disabled child a one-off short break payment last year. As far as I was concerned a ‘short break’ was something I had with Dylan whereas ‘respite’ was something I had alone; one was a break from our daily life and the other was a break from each other.
Surprised by the payment but pleased to receive it I provided details, as requested, of what I would do with the grant: I would take Dylan to Knaresborough to see Mother Shipton’s Cave and for a trip by steam train. We had a lovely time but a man from the Council later explained to me that the short break payments were aimed at carers, not the person with the disability. That money was for you he told me, barely hiding his amusement: it was for you to have a break, not Dylan.
I understand the reason for the change in language; the word ‘respite’ problematises the disabled person by suggesting that the carer requires space from a burdensome situation. It also implies that the benefits are only for the carer. Neither of these are the case. ‘Short break’ may be more neutral but it is also unsatisfactory because it doesn’t indicate what the break is from. In the absence of an alternative, however, I will use the term short break here to refer to breaks for carers from which the disabled person also benefits.
I know families who don’t feel the need for short break provision. In some cases this is because they already have access to informal support from relatives and sometimes it is because parents don’t want to be away from their child. For other families, however, short breaks are invaluable; in my case they have enabled me to continue to care for Dylan at home.
When I first became a single parent Dylan’s overnight breaks were essential as I taught an evening class; while my mother was able to look after my daughter, caring for both children became increasingly difficult. In time I was able to reorganise my teaching so that I no longer worked outside school hours though I continued to use Dylan’s short breaks to meet workplace demands at certain times of year. For some families, then, short break provision enables employment.
Maintaining a job or career is not just about financial independence; it also contributes to my sense of self. In this way, short breaks help to nourish the parts of my identity which are not solely about being a carer. They also provide space for my identity as the parent of a non-disabled child; while my daughter lived with us she had first claim on this time. Enabling parents to give siblings the attention they need is perhaps one of the key benefits of short break provision.
When time away from caring is limited it encourages careful reflection on priorities. I have always liked to spend short breaks doing things which Dylan has no interest in (I suppose this removes any guilt that he is being excluded from something he would enjoy) which would typically involve the arts or sports. There is a tendency, when time is limited, to make every minute count. This can create its own stress however: I am often exhausted when Dylan returns home, having rushed back from somewhere myself (during weekend breaks I have made regular trips to London and even Paris). I can also feel frustrated at ‘wasted’ time; tolerance for a bad movie is low when doing that meant not doing something else. Recently I’ve discovered that one of the best ways of spending time is to simply stay home and enjoy the space (a sign, no doubt, that I’m getting old).
Learning to let go
I remember how reluctant I was, initially, to accept short break provision. For parents, such support can feel like an admission of failure or an abnegation of responsibility. It can also provoke feelings of guilt as well as anxiety about whether your child is being cared for as you would want. My conversations with other parents lead me to believe this is entirely natural and part of the process of learning to let go of a child who has additional needs.
Although I know that Dylan and I benefit from short breaks the wrench at separation never ends. A single night, or even a weekend, is not long enough to switch off the alert of the carer brain. If I dose off on the sofa in the evening I wake with a start, my first thought where is Dylan? then the panic that I’ve slipped asleep while he is still awake and the race upstairs to check on him. On short break nights, my second waking thought reminds me that I am alone in the house; I can relax. But this state of constant alert doesn’t subside. I live my life this way; antennae listening out through the night, in case he wakes and needs me. And as well as the fundamental caring of the brain there is the mother’s heart which, sensing an absence, aches its remembrance.
Recently I have realised that it is not only me who has had to learn to let go; Dylan also has to accept change. I wanted Dylan to spend a longer period away last week as part of what I hope will be a phased transition to him eventually leaving home. I don’t want this to happen yet but when the time comes I don’t want Dylan to move suddenly from living at home to living elsewhere. My aim, therefore, is to gradually increase Dylan’s overnight breaks so that the balance shifts away from me. Although I am not a fan of Personal Budgets I have to acknowledge that it is thanks to this system that I was able to organise such a break for Dylan. While the standard care package offered to children up to 18 is excellent it isn’t flexible in that you cannot change or save days in order to access short break provision at different times or for alternative periods. A Personal Budget can, however, be used to fund a longer break, providing it is approved as part of a Support Plan.
Making self matter
How long before I have no right to call myself a poet? I asked a friend recently. I haven’t managed to write anything new for months. It may be hard for me to consistently live this but writing poetry is the most important thing I do for me: it is the critical part of my identity. Writing poetry makes a difference to who I am – it is what matters. It is perhaps strange, then, that the description I gave of the things I spend my short break time doing doesn’t include writing poetry.
The reason I don’t use Dylan’s short breaks for writing poetry is that they are overnight breaks and I can only write in the mornings. If I work on a poem after 2pm I usually ruin it. Since keeping this blog I have discovered I can write prose later in the day, but the only thing I can do with a poem is a bit of editing if I’m lucky. As I’m at work or caring for Dylan in the mornings, getting any writing done means being up at dawn. So when Dylan’s short break provider agreed to support Dylan for a longer break I knew that what I wanted to do with the time, more than anything else, was write.
I would rent a cottage, I decided, within a two hour journey from home (so that I could get back easily if needed). I would choose the time and location to fit in with a poetry festival so that I could socialise if I wished. As the main aim was to write I would choose a quiet location. I would allow myself a laptop for typing up drafts but prose and social media were banned. And, at a girlfriend’s suggestion, I would take my bike.
I don’t use my bike often because I am usually with Dylan who needs to ride tandem. Taking my bike to the cottage was not something I would have thought of if Caroline hadn’t planned to join me for an afternoon’s cycling while I was there. In the event it didn’t work out for us to meet up but I was enormously glad that we’d talked about it seriously enough for me to sort myself out with a bike rack and take my Tantrum with me.
It had been touch and go, though, whether I would even get to the cottage. On the morning of departure, not having packed or found a bike rack I was competent to fit, I temporarily lost confidence in the trip. I’d tried to prepare Dylan as best I could for what was to happen but as I put him on the bus for his day care centre that morning I could tell by a look in his eyes there had been a misunderstanding. Dylan had his trundle case with him as he was going to be away for longer. I suddenly realised that he had assumed that the suitcase meant we were going on holiday together as we had recently. Indeed, when I returned to the house I found that Dylan had put steam train leaflets on my desk. And so I burst into tears convinced I couldn’t leave him with such disappointment.
Later that morning I remembered that I had persisted with overnight breaks in the past when Dylan had been reluctant to go. I reminded myself that it wasn’t so surprising that Dylan would want to be with me; of course he would prefer an easy life with his indulgent mother or to be in his own space. This, I realised, reinforced the need to go ahead; Dylan would have to be independent from me one day and spending a longer period of time away from me now could help him to prepare emotionally. I ticked myself off for the suitcase mistake and went to look for a bike rack.
In praise of
short longer breaks
And so I set off for the Yorkshire coast on a sunny Wednesday, my bike strapped to the back of my car and my face puffy from crying. I was conscious of Dylan not being in his seat in the back. I found myself saying ‘Dylan would like that’ or ‘I wonder what Dylan is doing’. At some point though I put on a U2 CD which Dylan won’t let me play: may as well make the most of it.
When I stopped at a pub for a meal en route I automatically ordered for Dylan as well. Arriving at the cottage I felt a twinge of guilt when I saw that I had booked into Dylan’s dream world (sand, sea, barn owls and nearby swimming pool). As I chatted to the owner that evening about his autistic son (what were the odds on that I wondered?) I realised how impossible it was to stop being a carer; I might be off-duty but caring for Dylan was part of my identity and I couldn’t drive away from that. I had to hope the poet in me wasn’t easily lost either.
The first night I did the dosing on the sofa thing – woke and sat bolt-upright trying to figure out whether I’d put Dylan to bed or not – but within 48 hours I’d managed to embrace the joy of pleasing myself. The moment I felt my freedom from responsibility came the next evening while cycling into the local village to post a letter. This might seem a small thing but slipping out to buy a pint of milk or catch the post is not something I would normally be able to do. I would have to take Dylan with me, which would involve interrupting his evening routine, getting him ready, explaining what was to happen and hoping that he would cope (such a brief outing would be frustrating for Dylan). This is the sort of scenario that I would avoid by always planning ahead and ensuring that we have everything we need at home and I have done all urgent jobs. Cycling impromptu at nine o’clock at night to post a letter felt absolutely joyous.
Though the jewel in my week was undoubtedly the four hours uninterrupted writing each day, I discovered there was no end to the benefits of not caring. There were irregular meal times. Lane swimming. No Disney. Cherries to myself. Poem breaks during cycle trips. Waiting half an hour (quietly) for the barn owl to return from hunting. Leaving the cottage door unlocked. Having my papers spread all over the table (Dylan constantly tidies my desk). Lingering over coffee. Browsing antiques in the Georgian Tea Rooms. Sitting on the pier. Just sitting. Watching the gannets at Bempton Cliffs. Staying out late on the bike, into the evening, hungry and tired.
Towards the end of my week away I cycled down to the post box again. This envelope was addressed to Dylan at his short break home. I calculated it would just reach him before I got back. I’d never been away from Dylan long enough to send him something through the post. Was it silly of me? How would he know who the card was from? I chose a leaf-cutter ant. No one but me, I thought, knew that he liked them; surely he would understand the card was from mummy? As I dropped it in the post box I realised that Dylan had grown-up; he was at the start of his adult life. It felt like I was at the start of another life too, learning to let go.
I returned home with a draft of a tricky poem I’ve been wanting to write for two years. As I drove back I told myself that I should be glad of this, even if I found things hadn’t gone so well for Dylan. I was delighted to find, however, that he had been fine; the trundle case, I was told, seemed to have helped him understand his short break would be for longer. Dylan seemed delighted to see me. I gave him the white chocolate footballer I had bought him and later, when he had unpacked, he showed me the card he had stood on his cupboard.
All images, including a selfie, taken by me.