The Key

This week is the start of the academic year in England; pretty soon I will be deep in teaching. Although September no longer marks a transition point for Dylan I don’t think I will ever lose the anxiety that the end of summer brings for parents of children with disabilities. Each year I would live on my nerves through the first weeks of term, hoping desperately that all would be well.

It is three years, now, since Dylan left school. That was the hardest end of summer ever; my nerves burned for months. Happily, Dylan is settled at last and can live his life without such difficult jags of time; there are no sudden changes to the year’s rhythm, or inexplicable annual endings, in his residential setting. There is a reassuring continuity to Dylan’s life.

That’s not to say there aren’t changes; periodically something disrupts a routine or we deliberately introduce a new pattern to Dylan’s week. The last time I posted an update here, for example, I was anticipating taking a holiday without Dylan. I fretted terribly about the proposed trip, concerned that Dylan would be upset by my absence, but he was absolutely fine.

The key to this, I’m sure, was the extended timetable the care home staff made for Dylan. Instead of a weekly programme Dylan had a schedule which ran for the time I was away, ending with the day he would see me again. Dylan also had a weekly ‘overview’ schedule so that he could count the sleeps until his next visit home.  It didn’t seem to matter to Dylan that the gap between my visits was longer as long as he knew he would see me again.

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I’m really glad that I took that ‘next step‘ during the summer. I had a fantastic week in Brittany and relaxed into the different pace of time without Dylan. Some of the things that my girlfriend and I did Dylan would also have enjoyed, but I was able to linger over them in a way that hasn’t been possible in the past: a Chagall exhibition in Landerneau; a beach day at Poul-Rodou; a folk festival in Plomodiern; cycling on the Isle de Batz. I returned from holiday this year refreshed instead of exhausted.

I missed Dylan of course. I kept his timetable close by me and checked it each day to see what he was doing. Initially I talked about him a lot. In fact on the drive down to Portsmouth for the ferry I must have come close to driving my friend away with my talk of Dylan. That journey was terrible for me. I was in such a state of anxiety about leaving Dylan I had made myself ill: my stomach was in knots and I had a dreadful sense of foreboding. My friend let me talk or not as I needed. Having her to support and encourage me was probably key to my being able to take the step at all.

I’m not sure how patient she would have been with me had I continued to talk so much about Dylan during the week. At some point in the Channel , however, I felt the knots in my stomach loosen and my anxiety lift. The sun was shining. We were on deck. I could sit and read Zola and drink tea, as I had dreamed of doing. And so the week continued; while we were in France I made only one phone call to Dylan’s care home and sent just one email.

The email was to ask staff what size Dylan’s head was.  The last time he and I were in Brittany he bought a Breton cap which he has worn constantly since and I wanted to get a new one for him, as a gift. He looked a bit puzzled when I gave it to him on my arrival home, as he did about the Breton biscuits which had mysteriously appeared in the house.  I think he pieced things together when he saw my photos from the holiday, however. Usually Dylan looks through photos from our trips with great interest but I’d describe his interest in my pictures from Brittany as ‘passing’. So mummy had been away without him.  He ate the biscuits. He put on his cap…

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Dylan’s care home manager told me she thought parents should take a holiday, even if it causes separation anxiety. I understand that now.  It is important for parents of disabled children and adults to have a complete break, not just from caring but from thinking about themselves as care-givers.  And, I remind myself, learning how to be apart from your adult child is part of learning how to be a parent. In this respect the experience of a parent of a disabled adult is not dissimilar to the experience of any parent;  I was also anxious about being far from my daughter when she lived in France.

There is  something about being away from a disabled child or adult which can provoke particular anxiety, however.  Their vulnerability and dependence on others means you need to have complete confidence in the people caring for your son or daughter.  I feel lucky that Dylan is finally living somewhere I can put my trust in others.  This week I’ve been thinking a lot about how we make such decisions.  How do we figure out levels of confidence in someone? Is there a science to it? Do ticks on a checklist really reassure us?  Parents of children with disabilities spend their lives making difficult decisions about care provision,  but how we make them – well, that’s something I’m not absolutely certain of.

As well as the checklist there is surely something magical to this? Call it intuition, if you will. Something in your guts, perhaps. An unknotting.  Sense of lightness. Je ne sais quoi.  I’ve written about this before; how some of the critical decisions I’ve made about Dylan’s care have been based on something entirely irrational magical. And this week it struck me that I’ve been relying on such seventh sense since Dylan was born. Because, as a single working parent, I had to go back to work when Dylan was only a few weeks old so needed to find someone to look after him. I was pretty clueless about the process; I didn’t know how to care for babies and certainly had no system for figuring out how to choose a childminder. But someone very special came into our lives and I was able to get back to work – which some days meant working a distance from Dylan – with the complete confidence which comes from knowing you trust someone else to care for your child.

Blogs can be wonderful can’t they? I was so thrilled to find a message on mine last week from Dylan’s first childminder 🙂 I moved away from the area quite soon after Dylan was born but Tan has remained a precious memory. She was a key person, perhaps, because she made my first difficult separation from Dylan not just possible but positive. I think that is probably also an accurate description of my experience this summer.

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The thing about key people is that they tend to be transitory:  children outgrow childminders;  parents move away; friends move on.  I can add something else now:  care workers get promoted.  Dylan’s key worker will be moving onto a new role next month so one of the things we will be discussing at his annual review this week is her replacement. E has been a fantastic key worker; she has developed a great relationship  with Dylan and has been instrumental in developing critical aspects of his care, particularly around communication and behaviour support. Although I was sad to hear Dylan would be losing her as his key worker, I can’t say I was surprised. Key people are special people and if they are young,  gifted and ambitious they inevitably get promoted 🙂   The only question in my mind had been when and to where she would move.

Happily, the promotion is within the organisation so Dylan will still have occasional contact with E. I am telling myself that Dylan was lucky to have her as his key worker during his first year in a residential home; E has helped him to settle in and created a system of care around Dylan which should ensure continuity. As the message from Dylan’s first childminder reminds me, we keep people in our hearts and minds long after they have moved on: I’m sure Dylan will not forget.

One of the many things I love about Dylan is his capacity to form deep  relationships.  He has his own magical system for deciding whether to trust someone; I’ve seen Dylan reject some people entirely while embracing others with utter loyalty and commitment.  The transparency of Dylan’s affections means I am confident his ‘voice’ will be heard in the process of selecting a new key worker.

There are, of course, no promotion opportunities for parents; it is a role for life, with no possibility of moves up, down or sideways.  While that means there is no escaping the temporary anxiety of being far from your child, from time to time, it also means you are their continuity; the birth rock on which their whole life pivots. So although I don’t care for Dylan on a daily basis now, and am no longer the only person who knows how to do this, I am the one with the long view, holding his narrative together. That, I tell myself, is a privileged position to be in.

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A final key is for my daughter. She will turn 21 this week, a birthday we used to refer to as the  ‘key to the door’.  So this September I’m making wishes for both my children to walk  happily through their newly-opening doors …

 

Except for the photo of Dylan (looking uncertain in his Breton cap) the photographs were taken in Brittany in August.