Easter, Restored

Dylan and I had a tradition, for many years, of going away for Easter week; in the last ten years we have spent delightful holidays in Scotland, Ireland and Wales as well as across England and particularly in our beloved Yorkshire Dales. Since Dylan became unsettled in 2013, however,  I haven’t been able to take him away by myself and our Easter breaks have been a thing of the past.

In the new year, with Dylan continuing to do well in specialist residential care, I felt confident enough to book a cottage for Easter week. I chose the Llŷn peninsula in Wales; as well as beautiful walks there are steam trains, churches, castles and slates mines, all of which Dylan enjoys. On the run-up to the holiday I temporarily lost my nerve after an incident with Dylan while I was out in the community. I had struggled to manage the situation on my own and was worried about my ability to keep us both safe if Dylan became distressed in a vulnerable location while we were away. ‘Had I been foolish to plan the holiday?’ I asked Dylan’s care home manager. But she was reassuring:  I had thought things through and based the holiday on Dylan’s needs as well as my own; if I was prepared to be flexible and return home if necessary, she didn’t see any reason why I shouldn’t give the holiday a try.

So on Good Friday Dylan and I set off on our trip. I think we were both really happy to have our Easter tradition restored; there was something wonderfully familiar about the time, like deep memory. Because there have been significant changes in our lives, however, there were things we had to rediscover about each other. Here are seven things I learned…

1. Dylan’s key worker is key

This was the first time I hadn’t packed for Dylan myself. I wondered whether he would have the clothes with him that he needed and enough music, books and films for the week. What I discovered, however, is that I am not the only person who knows what Dylan needs 🙂 Apart from a belt and DVD, Dylan had what he required.  Furthermore, Dylan’s key worker had prepared symbols, choice boards and day and weekly timetable strips for Dylan to take on holiday.  She had tried to think of all the things Dylan might need to communicate while we were away. This support proved invaluable!

2. The schedule is essential

One of the first things Dylan did on arrival at the cottage was give me a timetable strip to fix for the next day. I suggested we might spend the morning looking through leaflets to pick some activities for the week followed by a trip to the supermarket and a walk on the beach in the afternoon.  The weather during the holiday was a mix of blue blown sky and heavy rain; the first day, however, it poured.  After lunch, therefore, I suggested a film. Dylan hovered nearby. ‘Why don’t you get a film?’ I repeated. He crossed his arms.  ‘Dylan’, I said, ‘do you want to watch Pinocchio? Or The Good Dinosaur perhaps?’  Fixed Stare.  After a while he disappeared. I got out a book and settled myself on the sofa. Soon after, Dylan reappeared, timetable in hand, showing me the beach.

We had a lovely walk, of course, and I was glad I hadn’t been so easily let off the hook; we were on holiday in the UK after all and walking the beach in rain is part of the deal.  I was aware that Dylan’s support staff have a method for ‘change of schedule’ and that Dylan is usually happy to accept this but I didn’t attempt it again. Instead, I was careful to promise only things I was pretty sure we would be able to do. What I discovered was that as long as we followed the schedule Dylan didn’t mind if something went wrong.  The day we visited ‘Electric Mountain’,  for example, all the tours were full.  At the booking desk, I felt my heart sink; there would be a scene I was sure. But Dylan was fine; he seemed to understand and accepted my proposed alternative of a steam train by the lake.

3. It’s getting to the start of something, not the end, that matters

Perhaps this was because, for Dylan, it is getting to the start rather than the end of something that seems to matter. During the week we had a routine of preparing Dylan’s schedule each evening, sifting through the leaflets and symbols to build the next day’s activities. And each day, wherever we went, Dylan carried his schedule with him, pulling the symbols off one by one until the strip was empty. Early in the week I puzzled as to why Dylan removed the symbols  before he started the activity rather than when he had finished it which seemed counter-intuitive to me. I ended the week, however, appreciating the sense of achievement in getting to the starting point rather than the finishing line.

4. Technology sometimes saves the day week

Holidays might be a welcome break from email and social media but I was glad, on Easter Sunday, that I hadn’t left all our technology at home.  Dylan doesn’t use an ipad to communicate but he has one and at the last minute – literally as we were saying goodbye to his key worker – I decided to bring it with us. I’m not very comfortable with technology  so I didn’t think it likely I’d be able to support Dylan with his ipad while we were away. In the event, however, it virtually saved the holiday.

‘Memo’ Dylan started saying to me loudly and repeatedly as soon as we arrived at the cottage on Good Friday evening: ‘Memo.’  I knew the word was familiar but I hadn’t heard it for a while and couldn’t quite place it. There were pictures of clown fish on the wall of the room Dylan was sleeping in and that night it occurred to me that he was perhaps wanting to watch his Nemo DVD. I looked through the films he’d brought with him; his key worker had restricted Dylan to seven films and Nemo wasn’t among them.

Next day, at the supermarket, Dylan made a beeline for the DVD display. ‘Memo’ he said repeatedly as he flicked through all the racks systematically: ‘Memo’.  There was no Nemo. Dylan became distressed. ‘We will look somewhere else’, I told him. Dylan picked up a copy of The Good Dinosaur. ‘That’s a good choice’, I said. Dylan wasn’t entirely satisfied and continued asking for ‘Memo’ while we shopped. ‘What does he want?’ the check out girl asked. ‘Nemo I think’ I replied:  ‘Do you know anywhere he might find it today?’  But she didn’t. ‘There isn’t anywhere else in the town really’, she replied. ‘We might find Memo’, I reassured Dylan, ‘when we go on our train trip tomorrow’.

What I’d forgotten was that the next day was Easter Sunday and the shops would be closed. Dylan hadn’t forgotten about ‘Memo’ though.  Although he enjoyed the trip his anxiety about finding ‘Memo’ was palpable. When we arrived back at the end of the day Dylan prostrated himself on the station platform in protest. These ‘lie down’ protests can last a while and escalate; I looked at Dylan lying in the rain, face to the ground.  What could I do? Then I remembered the ipad…

A few years ago, when we took a short break by plane instead of car, I had downloaded a couple of films onto Dylan’s ipad. If we went back to the cottage, I told Dylan, I could get try to find Nemo. Eventually I persuaded Dylan to get up – we headed back towards the car. ‘Memo’ he insisted:  ‘Memo’.  And then, another light bulb moment:  ‘Memo’ was not Nemo  – it was Dylan’s word for The Little Mermaid. What he wanted was his beloved Ariel. Could he really not have this with him?

Back at the cottage I discovered he didn’t.  As this is probably Dylan’s favourite film (along with Peter Pan and Pinocchio) the fact he didn’t have it made me realise that Dylan does still need support to pack the things he is likely to want.  My technological anxiety meant it took me ages to get Ariel’s Beginnings onto Dylan’s ipad but I finally managed it. This made Dylan so happy 🙂

5. I’m no longer a carer

It was with a shock I realised that I had lost the rhythm of caring for Dylan; washing and shaving him each day, and supporting him with self-care skills, was something I had got out of the habit of doing. Only eight months since Dylan moved to residential care and already I had forgotten so much.  Instead of doing it automatically, now I had to make a conscious effort to care.

6. Sugar might not be the problem

‘Shortbread’ Dylan said to me on day four.  Since he has been following a low-sugar diet Dylan bakes with a sugar-substitute so that he can still enjoy sweet-tasting treats. I had neglected to think about Dylan’s supply of sugar-free cake; I didn’t have any xylitol with me and there was no possibility of buying low-sugar products in the places we were visiting. I realised, too late, that I should have made a batch of Dylan’s special shortbread and brought it with us.

As Dylan doesn’t understand why some shortbread is OK for him to eat and some shortbread isn’t,  my refusal to let him have it must have seemed unfathomable. The next day, therefore, I decided I would let Dylan buy some regular shortbread. I prepared myself as best I could for the aggressive behaviour that has been linked with Dylan eating sugar by making sure we were safe home before it was likely to kick in. There was, however, no reaction (except joy).  Next day, curious, I let Dylan have an ice cream (again as we were about to head back to the cottage). Again, nothing.  On our final day: another ice cream. And, again, nothing. Ho hum. What to make of that? Maybe sugar isn’t the problem I thought it was?

7. Symbols can be reinstated as well as removed

As well as a daily schedule Dylan had a weekly chart which I used to illustrate the number of days we would be staying at the cottage. So that Dylan understood when the holiday would be over I encouraged him to remove a photo of the cottage from the chart each day.  On the final day of our holiday, as I was gathering things for departure, I glanced at Dylan’s schedule: he had stuck all seven photographs of the cottage back up. ‘Very clever, Dylan’, I told him, ‘but I’m afraid we do have to go home’.

As we walked down to the beach to say goodbye I realised Dylan understood this perfectly well. It was good that he was initiating two-way conversation through his schedule, I told myself, even if it was a request to do something over again. I’ll take that as an indication the week was a success: not just symbols reinstated, but Easter restored.