You’ve got a talent for holidays, a girlfriend observed in response to my account of a trip to Kent with Dylan. I’d organised the visit as part of a ‘Retro England’ theme; previous holidays had been planned around the themes of islands (Skye and Wight), dis/union (Wales, Scotland, Ireland), mines (Northumberland and Cornwall) and pilgrimage (Canterbury and the Pennine Way).
My holiday themes usually emerge from a consideration of possible locations based on Dylan’s love of steam trains, churches and zoos. Later I weave in connecting narratives from art and literature: in Margate it was Tracey Emin and TS Eliot; on the Yorkshire coast it was sea poems and Grimshaw; in Laugharne it was Dylan Thomas and Lynette Roberts; and on the Isle of Wight there was Tennyson. Finally I add terrain (coastline, caves and mountains) and tandem cycling to our holiday plans.
I enjoy pulling these various threads together in order to identify locations and themes. The purpose of the themes, I think, is that they enable me to engage with an ‘autism-friendly’ holiday rather than feel sore that I can’t travel to exotic locations, go on adventure holidays or take cultural breaks. Instead of a holiday being primarily about Dylan’s needs, a theme offers something for both of us.
Independent holidays are helpful for living with autism; they allow us to go where we wish and to do what we want, when we want. It means we don’t have to compromise by not doing something we like or tolerating something we don’t. But individualised themes are also hard work in that I must research and organise travel, accommodation and activities.
I’ve always been an independent traveller so am used to such planning. Before my children were born I travelled in the Americas and Middle East and in the years before the Berlin Wall came down a girlfriend and I spent long hours visiting the embassies of Eastern Bloc countries while planning a grand tour of Europe. In comparison, organising autism-friendly holidays in the UK is a cinch.
Even within a small family unit, however, compromises must be made. While she was living with us my daughter became increasingly frustrated by our holidays despite my themes. Customising trips for three strong-willed people, I discovered, was challenging. Alone is simple. Pairs is fairly easy. Three gets tricky. Things cannot always be the way we want them when we’re part of a group – unless, of course, we have an ace to play.
I am guessing my daughter would say autism can be an ace. I would probably agree with her. While our holidays were customised, they were designed around Dylan’s needs first and foremost. In time I came to accept the run of the cards and feel lucky if I managed to play a few of my own – but mothers are tolerant that way. This can be tough on siblings.
While Dylan-friendly holidays might have been hard for my daughter I must admit to having embraced the excuse they offered. As someone who dislikes having to fit into groups (or finds it difficult to fit perhaps) Dylan’s needs provided a useful smokescreen for my own. While accommodating an autistic son can be frustrating, it wasn’t as bad as fitting in with a group of non-autistic strangers. Holidays with Dylan might involve more trains and fewer museums than I would like, but groups demand compromises too and on balance I knew which I preferred. Or at least I thought I did.
In my last post I referred to a short break holiday which Dylan and I took earlier this year (I’ve written more about it here). Unusually, that trip was a group holiday. I booked the trip – a steam train holiday – for Dylan (I was to be in a supporting role only). As well as appealing to Dylan’s interests a ready-made holiday had the advantage of everything having been done for us. The only problem I could foresee was that it had been done for twenty other people as well. But I could, I told myself, cope with the demands of a group for Dylan’s sake – it was only five days and if we hated it then we would at least have tried. In the event, however, the holiday was a success. To my surprise, some of the aspects of the holiday which we most enjoyed arose from the group nature of the trip.
1. Being in a group freed me to focus on Dylan rather than reading maps, planning, driving or organising activities.
2. Members of the group with experience in the care sector or a particular feeling for Dylan gravitated towards us while others wanted to engage us in conversation or simply observe. This was good for raising awareness of autism and advocating in the community.
3. The hotel staff were attentive to Dylan’s individual needs even though we were part of a group. One waitress in particular took special care of him; Agata kept Dylan’s blackcurrant topped up during dinner and made sure he got his meal first. She told me that she was enjoying Dylan being at the hotel; it made the dining room more ‘normal’ (by which she meant more like the world outside the hotel). I was grateful to Agata for modelling inclusive practice to hotel guests; the actions of another member of the community can be more powerful than those of a parent sometimes. The holiday pre-dated Dylan’s sugar-free diet as the photos of Agata’s Special Sundae Kit show.
4. In a group others keep an eye out for you. As I am used to travelling alone with Dylan, sometimes without anyone being aware of where we are or what we are doing, this felt strange. As I get older and less able to manage independent travel with Dylan, I might appreciate the safety of numbers.
5. There are benefits in numbers at any age, however; I’m not sure that I would have recognised Harry Potter’s bridge if I hadn’t heard another member of the group say that is what it was. I learned a lot from others during the holiday and realised that what Dylan learns is usually limited to what I happen to know.
6. In a similar vein, we did things on the holiday which I might not have done without the group; because the itinerary was not mine, it offered opportunities for Dylan and I to engage with different activities. This was good for both of us.
7. Being on a group holiday meant that I came home with photographs of myself and Dylan. Offering to take our photograph was something which people – even those who weren’t sure how to interact with us – felt comfortable with and wanted to do. For me this was a treat as I have few pictures of Dylan and I together. The concept of ‘witness’ is something which interests me; since my daughter moved away it has felt as if Dylan and I live unwitnessed. For once we had some evidence.
There were also things about being part of a group which were tricky:
1. Because the itinerary is fixed there is a lack of flexibility about a group. This was sometimes challenging for Dylan and I who are used to spending shorter or longer periods in locations depending on how interesting we find them. Dylan always wanted more rather than less time.
2. Because of this we were usually last back for the group rendezvous, something which may have been frustrating for others. I had few strategies, however, for encouraging Dylan; if he was absorbed in a second hand bookshop (as he was on one occasion) then he saw no reason why he should leave until he had finished. In order to be punctual I had to be canny at managing our stops.
3. One timing issue which neither I nor Dylan had any control over was in relation to toilet stops. It takes longer to stand in line for the disabled cubicle (I have written about the challenge of disabled toilets here). Dylan and I rarely had long enough in the time allocated and were often late back to the group. Having said that, the reason for this was obvious and no one ever expressed their irritation (at least not to us).
Although a group holiday may not seem an obvious choice for someone autistic, the advantages outweighed the disadvantages for us. As well as the benefits for Dylan I was able to claim some of my own. I relaxed more than I do when I am in the driving seat. I read more books, rested more and enjoyed more conversation than usual. Providing it has autism-friendly elements, such as structure and focus, a group holiday can be a good option, especially for a lone parent.
Looking back I would say that the key benefit, however, was that Dylan learned something about accommodating others and that others learned how to accommodate him. For me, this is advocacy in action. Inclusion in the community is, ultimately, about the quality of our interaction with others and I enjoyed watching Dylan make his way among the group and establish his own relationships. I was especially touched by the way members of the group responded to Dylan as an individual, as they got to know him, rather than as my disabled son.
An unexpected treat was that Dylan and I were not only welcomed by the group but befriended by a couple, Hazel and Hector, whose company we enjoyed during the holiday and with whom we have stayed in touch. Dylan, Hector said to me as we said goodbye, is an exceptional young man. Through some of the troubles of recent months I have run those words through my head, gratefully.
Dylan and I took the holiday directly before the emergence of some behaviours in Dylan which are giving cause for concern (you can read more about this here and here). I don’t think those things are linked but I sometimes make the link when explaining the changes in Dylan to professionals; it provides a useful timeline because I know that when I took Dylan on the holiday last May there hadn’t been any incidents. Given recent developments in Dylan’s behaviour, I can’t imagine embarking on such a holiday now.
That makes me sad, especially as it is the thing which Dylan keeps asking me for. I think the holiday must have been one of his lifetime highlights as he leaves brochures from the holiday company on my desk constantly. He ‘reads’ a brochure every morning before leaving for his day centre. Every night he says ‘train’ to me and makes the makaton sign. I say ‘yes, train’ and take him on day trips at weekends – he likes them, but I know there is an edge of disappointment that it is not quite what he had in mind.
This week I found a postcard of Harry Potter’s bridge propped up on the piano. I have no idea where it came from; I don’t remember buying it while we were on holiday though I guess I must have done. Certainly I don’t know where it has been kept since. Dylan clearly knew – clever of him to be more specific about the clues he is leaving for me: not any steam train, mummy: this one. If there are circumstances that can draw the best of us out then maybe a group holiday is Dylan’s; I flicked through the brochure the other day, wondering if I might be able to find something short and safe enough to chance.