"I don’t want that person to sit by me. He’s a stranger. Tell him to sit somewhere else. Why aren’t they putting our bags on? Why is it taking so long? Why is that man behind me chewing so loudly? How long in minutes are we going to be on the plane and how many hours will we be spending in Greece?"
As my 10-year-old son bombarded me with questions while we sat on the runway, waiting for our plane to take off, I felt my body tense with trepidation. Perhaps this, our first overseas holiday since his autism diagnosis in 2019, was a mistake.
For our son, Eddie, routine, familiarity and knowing what to expect is crucial to managing on a day to day basis. A change in environment, climate, food, pace and people are, for a high-functioning autistic child, seriously challenging. It can cause panic, anxiety and, ultimately, meltdowns – shouting, crying and, sometimes, lashing out.
Everything is extreme with Eddie, from his reactions and his heightened senses to the way he argues with his siblings, and he can switch rapidly from absolute joy to untethered rage.
That’s why we hadn’t attempted to go abroad since he was first diagnosed, three years ago.
But as time went on, the lure of a holiday in the sun had grown stronger for my husband and I, and Eddie’s two ‘neurotypical’ siblings – Charlie, 13 and Jemima, eight – and this summer, we knew it was finally time to take the plunge.
We prepared as best we could, laying foundations by showing Eddie pictures of the villa we’d be staying in, the beach club we’d be going to, and making sure he had his own bedroom to retreat to while we were there.
We also contacted the airport and the airline in advance (after having flashbacks to one major meltdown he had in an airport queue coming home from France, where he threw himself on the floor and refused to move while a crowd of disapproving onlookers gathered behind us). They advised us to make sure he was wearing a sunflower lanyard to indicate he has an invisible disability, and explained that there was a quiet room at the airport we could take him to if the need arose.
We had chosen the Peligoni Club, on the Greek island of Zakynthos, for its small size, and relaxed, private atmosphere – and also because it offered the best of both worlds: a quiet villa, plus a nearby hub, with plenty to keep the other two occupied, including watersports and, hallelujah, a kids club.
Trying to find something that worked for the five of us as a family was tricky, but the staff were incredibly helpful from the get-go, even providing the box of Lego I’d requested on arrival to help Eddie self-regulate.
Even so, it was a trip of highs and lows – more challenging and complex than I could ever have anticipated.
For starters, Eddie has no filter, so I’m never quite sure what he will say or do. Moaning "this is hell, I HATE this place, in a busy shop we visited in Zakynthos (which, in hindsight, we probably should have avoided, but gingerly set foot in after succumbing to pester power from his siblings) raised a few eyebrows, and I ended up taking him outside for an ice cream while his brother and sister browsed the Star Wars inflatables.
Eddie also needs time to settle in to new places, which meant that – despite our best efforts at cajoling – he didn’t want to do the family water skiing trip we’d scheduled for our second day. Instead, my husband Dom ended up taking our eldest son, while I took Eddie and his sister to the club pool.
All was well, and I soon got chatting to another mum, who had a daughter about Eddie’s age – when suddenly, to my horror, Eddie started shouting a swear word in front of all the other families. I quietly enticed him out with the promise of a milkshake, but the damage was done, and the mother I’d been chatting to avoided me for the rest of the week. I should have mentioned immediately that my son was autistic, and telling her after the fact sounded like an excuse, so instead I swallowed my pride and, not for the first time, tried not to let the judgement bother me.
But with all the challenges came the wonderful. We met some lovely, kind people – including Anouska Shearer, head of guest relations at Peligoni, who went out of her way to make us feel comfortable, even arranging a babysitter one night after Eddie had gone to bed – and some other great families at the club’s ‘party night’, including two young teachers and the parents of a boy with ADHD, who wanted to hear all about Eddie.
Another highlight was the boat trip we took on the famous Odyssey. It was just the five of us, plus a lovely couple, the skipper, James, his partner and first mate, Carla, and their rescue dog, Ayila. We were initially apprehensive (and hungover – it was the day after party night), as the last time we’d tried to get Eddie on a friend’s boat, in Devon, he had point blank refused. But James and Carla were very gentle and reassuring with him, and the lure of their dog sealed the deal.
When it came time to paddleboard, we hadn’t even planned to try and entice Eddie to give it a go – but he surprised us all. James lowered the anchor so that Dom and I could paddle about when, to our delight – no doubt because we’d taken the pressure off – Eddie decided to join us. It’s always wonderful to see your children try something for the first time, but with Eddie it always means that little bit more, because I know the challenges he has to overcome are so much greater. Seeing him jump off the boat brought a tear to my eye, and he was soon paddling away on the board beside Dom, eyes wide with glee as a school of tuna swam by.
But after such a high – so much excitement and sensory overload – came the inevitable low. The next day, Eddie refused to leave the villa, saying he was missing his Lego, our dog and his bedroom at home. Having been on cloud nine the day before, and describing our villa, Avgi, as heaven, now he only wanted to go home. He spent the day splashing about in our swimming pool, until we managed to tempt him out to the food festival, where churros took the edge off things.
Nevertheless, the experience of travelling with Eddie was overwhelmingly positive – the relaxed vibe at Peligoni worked perfectly, the boat trip was magical, Eddie loved the pool and the villa and the doughnuts, and Charlie and Jemima loved the Sharkey and George kids club and making tie-dye t-shirts. We were able to spend time as a family, in the glorious Greek sunshine, and I’ll take that as a win.
Next time, we’ll remember not to overschedule, make sure we lower our expectations – and book an extra paddleboard.