Dylan’s first holiday, before he was diagnosed autistic, was in Brittany. I have a photo of him at a roadside Aire near Mont St Michel where, fresh from the overnight ferry, we had stopped for breakfast. We were with a man I had met when Dylan was six months old (the relationship with Dylan’s father had ended before he was born) and with whom I was expecting a child. That morning at Mont St Michel I felt as if I’d emerged from dark winter into a world of bright promise.
When we returned to Brittany the following summer the promised world had thrown shadows around the light; as well as a newborn daughter we had a newly-diagnosed autistic toddler to care for. My memory of the period is of profound sadness but that year, and for as long as the marriage lasted, we took delight in our Breton holiday. There was something about the region which we found comforting – almost healing – and which the children loved.
These visits stopped when the marriage broke down. With sole care of Dylan and my daughter I wasn’t in a position to make the trip, financially or emotionally. Practically, too, I felt unable to embark on a long journey by car with sole charge of two young children, one with a disability. So after that we holidayed closer to home while I re-built my confidence and resources. When my daughter was 14 she went to live in Scotland with her dad but two years later she returned to resume her schooling in England and live again with me and her half-brother. My daughter had taken an interest in languages and become fluent in French. Why didn’t I go to France anymore? she asked. She had such wonderful memories of spending childhood holidays in Brittany. Could we go back there? After all, she was intending to study French at university. Couldn’t we go this summer?
So I booked a cottage in Brittany for a week thinking it was, indeed, a good opportunity. By the summer however, my daughter had returned to Scotland. I’d been left, it seemed, with the booby prize. Never, ever – I told my friends – would I have booked a week in Brittany for myself and Dylan. Caring alone for a disabled adult with severe autism and a severe learning disability involves, on a daily basis, the assessment of risk. I try to introduce new and challenging experiences into Dylan’s life, but always with a contingency plan for if things go wrong. I had, I argued to friends, no contingency for breaking down/getting lost/getting sick/having an accident while we were in France. And I couldn’t even speak French…
On the run-up to the holiday I adopted various strategies for not dealing with the booby prize. I checked the small print about cancellation but didn’t cancel, telling myself I couldn’t afford the cancellation charge and cost of a replacement holiday. ‘You don’t have to go’, a counsellor and friend told me: ‘you can just not go’. But a stubborn streak in me refused to lose the money and the holiday too. I half-heartedly asked a couple of friends whether they would like to take my daughter’s place but found I couldn’t go as far as inviting the man I was half-heartedly dating at the time. I spent a good deal of time, too, not thinking about it. Then, as if on cue, my right arm developed a problem. This is ‘Dylan’s arm’ – the one he always insists on holding onto when we are out and about, and the one he uses as an extension of his own body to lead and tug and pull me to where he wants to go. I had succumbed it seemed, after all these years, to ‘carer’s elbow’. I could hardly move for pain and driving was out of the question. Surely this was the solution to problem booby prize?
My GP told me that it was probably nerve damage and she could give me something which would help. She would happily write a letter saying I was unable to drive, for holiday insurance purposes, but perhaps I could try the amitriptyline for a few days? My osteopath concurred and also recommended exercises, cold compress and a thermoskin brace if I wanted. All these proved helpful. Even more helpful was the moment when she paused, looked me in the eye and said: ‘But you can do this if you want. You’re a competent woman’. This was a transforming moment. I had never given myself permission to think of myself as competent before. But now I sprang into action. I booked extra breakdown cover and got the car checked over. I telephoned my bank to make contingency financial arrangements if required. I printed out maps and wrote directions to myself in giant letters I could read while driving. I notified people that I was travelling with a disabled adult. And I spent every spare minute revising my schoolgirl French…
This summer I drove through Brittany singing along to the Adele CD which Dylan loves as he swayed to the music in his seat in the back, a big smile on his face. ‘I’m a competent woman’ I shouted out of the window at passing cows as I opted for unmarked roads and negotiated creative routes: ‘I’m a competent woman’.
Our journey to the cottage in Brittany went smoothly and without a hitch. One of Dylan’s special attributes is his phenomenal memory; because of his idiosyncratic retrieval of memories, and the fact he can’t communicate them verbally, it can be easy to forget that he remembers pretty much everything. However it was clear from the way Dylan led me around the ferry as we left Portsmouth harbour, showing me where everything that he was interested in was located, that he remembered his last trip to France ten years before and knew exactly where we were going.
It is sometimes said that it is small shifts in routine or the environment which autistic people find difficult, not major change. This is certainly true of Dylan who seems to enjoy the adventure of holidays. So while Dylan’s memories of being in Brittany created some expectations about what should happen on the holiday, it wasn’t to the point of rigidity. This meant I could introduce different rhythms, activities and even foods during the week. As a vegetarian family, galettes had always been a useful staple while we’d holidayed in Brittany when the children were small. This proved to be another memory which Dylan quickly recovered and regular visits to creperies became a significant part of the holiday. Indeed, these became so important to Dylan that he started to verbalise not only a sound for ‘pancake’ but, before I ordered, ‘sugar’ (to try and secure a crepe instead of the healthier galette). Within this routine, however, there was some adventure.
Because ‘vegetarianism’ has no meaning to Dylan I don’t object to him eating something non-vegetarian if the non-meat option is one he’s unlikely to want. Dylan particularly likes vegetarian sausages and doesn’t understand not being able to eat something that looks like a vegetarian sausage but isn’t. For this reason, he occasionally eats ‘real’ sausages. While on holiday I’d ordered him sausage galette one day which he enjoyed so much he said ‘saucis’ the next time we were in a creperie. I duly ordered some. When the plate arrived I was puzzled; I’d never seen spring-shaped sausage before. I was certain Dylan would not eat them. The usual tests were done (stare, sniff, touch) before Dylan ate all four of the strange springs on his plate with gusto, one after the other. ‘S’il vous plait’ I called to the waiter, ‘Qu’est-ce que le saucisse mon fils as mangé?’ ‘Chitterling Madame’, he replied: ‘Un spécialté regional’. Chitterling! Dylan had eaten pig intestines! But of course: while Dylan’s rigidity around food may be cultural, the culture is that of autism not Englishness. He would probably have been equally thrilled with a dish of escargots.
During the holiday I was dependent on school girl French accompanied by the over-stated gestures I have a tendency towards. I hadn’t been aware of this before, but one afternoon – while acting a charade about the removal of hay stooks from the field outside my bedroom window – I realised the owner of the gîte (the audience for my performance) was amused by my non-verbal communication. I must have developed this strategy during the years looking after Dylan; if you have care of a child who doesn’t speak or easily understand language, then it becomes natural to enrich your communication with whatever is to hand. Pictures, photographs and other visual aids are great if you have them ready, but these things must be planned for. I guess I have got used to using my arms, hands, face and my whole body if it helps…
When I realised that the strategies I use to communicate with Dylan were also helping me to be understood in another language, I started to make connections between my experience of ‘being abroad in France’ and Dylan’s experience of ‘being abroad in a non-autistic world’. Here, in Brittany, my son and I were both without language. Was this, I wondered, why I had been so anxious about travelling alone with Dylan? I started to think about how often, in our own community, I have to ‘mediate’ for Dylan linguistically; on a daily basis I speak for him, explain for him, explain him to others or ask questions on his behalf. Often this is a complex linguistic as well as social challenge, involving a judgement about how to describe the nature and impact of Dylan’s disability to others in order to explain his behaviour or secure some resource (a disabled toilet, say). Perhaps it was my awareness of not being able to give this linguistic (rather than any practical) support to Dylan that had seemed such a barrier to travelling abroad?
Once I realised that we were both without language, and that we temporarily shared the experience of ‘being abroad’ I began to enjoy the idea that there was this equality between us while we were on holiday. If you care for a disabled child or adult it can be hard to establish an equal and democratic relationship, particularly if the disabled person has a learning disability and is ‘non-verbal’. I found this sense of us being equals without language enjoyable. However, I soon realised my error; in this context, Dylan had advantages over me.
Because Dylan isn’t distracted by language (listening to or speaking it) he is free to focus in detail on the visual world and to store this in the way that we accumulate words. This was very much in evidence when shopping the day after we arrived. Confronted by a long aisle of biscuits in a supermarket I had no idea how to even begin to choose; as I stood there, feeling overwhelmed, Dylan swiftly plucked a packet from a shelf and put it in the trolley. The biscuits were some of his favourites but not a brand or in packaging that was familiar to him. How had he located these so quickly, I asked myself?
I realised that what Dylan must have done was scan the photographs on all the products, quickly arriving at the right image, while I was still bogged down trying to read the package text. This visual scanning is probably what Dylan does all the time at home; for him, shopping at the Intermarché in Matignon was no different to doing the weekly shop at the Co-op in Sheffield. During the holiday I would see further evidence of Dylan’s visual intelligence. One day on a trip to Dinan – which I had forgotten visiting previously – he led me confidently through the old town to a square with a view identical to a snapshot in a photo album at home. Not only did Dylan revisit places accurately but he continued to commit new places and routes to memory; on the return journey to the ferry, cutting it fine at the end of a long drive, he saved our crossing by letting me know I had taken a wrong turn at Caen.
As well as the advantage of Dylan’s visual language I discovered a rather unexpected advantage of autism while in France this summer. On our travels, it was Dylan who repeatedly charmed and befriended people; within minutes of meeting Madame Bilton, the owner of the gîte, they were smiling, hugging and kissing each other on the cheeks, while I held back, searching for something appropriate to say. In shops, museums, galleries and clock towers, my son smiled, greeted and charmed his way into passing hearts, while I hovered with my inadequate ‘bonjour’ and ‘Il est mon fils’. Dylan, I realised, has been getting by on what might be called ‘native charm’ all his life; he knows how to make quick judgements about whether or not to trust someone, and how to show them – without a word – when he does.
On the ferry en route home we went into the duty free shop. One of the things I had wanted to buy for myself while in France was a bottle of the Guerlain perfume Vol de Nuit, attracted by stories I had heard of its marvellous sillage, its use by French courtesans flying between Paris and North Africa during WWII and the propeller-shaped bottle. Dylan, restless and bored at my side, knocked over a display of bottles, and the impeccably-groomed assistant descended on us. Relaxed in my new-found confidence in Dylan’s skills, I left him to take her hand and treat her to one of his big smiles. By the time we left the store Dylan had not only charmed her but was clutching a bottle of Armani Code she’d helped him pick out: his first bottle of scent for men. Moi? I settled for some Chanel No 5 (they didn’t do Guerlain).
One of the reasons we were cutting it so fine for the ferry that day was that on the way to the port I decided to take a detour to Mont St Michel; I wanted to go back and stand on the same spot as in the photograph I had of myself with Dylan as a toddler. Even in a week I’d discovered things about myself and Dylan I hadn’t previously realised; after all my hesitation about going to France, the experience had given me the confidence to travel alone and abroad.
On our return to England I resolved to go back to Brittany the following year. I’ll do some things differently though: my language skills will be better (I have already enrolled in a French class on Dylan’s respite nights); we will go for longer; and I will be a bit more selfish about shopping for that Vol de Nuit.
All the photographs were taken by Liz