I remember the day I found out that my son Charlie had autism. I mean I already knew of course; the assessments had been going on for two and a half years. But actually getting that letter. That casual drop on the doormat of a plain brown envelope. Meaning nothing to anyone else necessarily, but shattering my world. Seeing it on paper made it so much more real. I can’t even begin to explain how I honestly felt. I suppose the only way to articulate it is to compare it to when people who’ve had near death experiences say “their lives flashed before their eyes.” Only it wasn’t my life; it was his. This beautiful, blonde haired, blue eyed boy, and all of the dreams I’d had for his future. It was like they were stuck in a swirling vortex, disappearing down a dark hole. It was the hardest time of my life without a doubt. Because I couldn’t fix it. I couldn’t stop it from happening. I felt totally powerless, afraid and alone. I of course had no idea then of how the next few years would pan out. All I was being told by the medical professionals was that it was going to be tough, and there were so many things that my little boy might never do.
And this is where the torturing of myself began I guess. I started to create so many scenarios in my mind. Imagining a glimpse but then telling myself that it could never be. I also think, looking back, that this was probably the beginning of my dance with depression but it went undiagnosed and unnoticed for some time. It was often the little things. Like the fact that maybe we’d never play Monopoly. It sounds so silly, but those minute, seemingly insignificant details were just as disturbing as the idea that I might never hear him call me “Mum.” Would he ever believe in Father Christmas? Would I ever be a grandmother? Would he have friends? Go to school? Go on trips? It was an endless barrage of “what ifs” and uncertainties.
This post is not written to tell you that everything magically turned out to be alright. Don’t get me wrong, the last 4 years of Charlie’s development have been incredible. I’m merely giving you a back story in to how it all started. This way I hope that you can begin to understand how something like taking Charlie on his first proper holiday is such an incredible milestone. And that’s exactly what just happened. In October, Charlie spent a sunny week in Sardinia.
He had been away before, a couple of times when he was really small and then to the States to visit the Autism Treatment Centre of America aged 5. But this was his first proper holiday since his autism diagnosis. I was nervous of course. But I figured the best bet was to try and prepare for every eventuality, even keeping my eye on emergency flights home in case he absolutely hated it. Luckily, Charlie was a total star. He loved his little bungalow, his bunk bed, his pool and his trips to the beach. I couldn’t have been more proud of how he handled these new surroundings, new people and new boundaries. One morning I even got to watch him dance in the pool, copying the children’s entertainers who were performing a routine. In that moment, he was just like every other child there. And it was a moment that I sat and revelled in.
But lets talk about the practicalities, that’s what I’m trying to get on to……. what preparations can you take when travelling with someone who has autism?
I actually only have one very big piece of advice – TALK. I recommend that you simply talk to as many of the parties that are involved in your trip as possible. Booking agent, Tour operator, Airport, Airline, Hotel. Perhaps you think this is a tad extreme? All of my experience has led me to believe that the more people who are aware of the situation and your specific needs, the better. This particular holiday, for example, was booked through TUI. Immediately after booking I telephoned their special assistance team and they were quite wonderful. I was informed that I would actually not need to make any further calls, that they would in fact do the rest of the work for more.
We were departing from Manchester Airport, which the TUI customer services representative advised me is one of the leading UK airports in Autism awareness. On arrival we would be able to collect a lanyard (ours then to keep for all future travel) and this would allow us to bypass the majority of the queues. It also meant we could board the plane first or last, depending on what would be best for Charlie. This all applied to our return journey home too. TUI then allocated our plane seats in the quietest section of the plane and informed our hotel that we would like a ground floor room and good wifi signal – VERY important! Immediately after this one conversation I felt so much better and my anxiety reduced massively. Don’t be afraid to ask for what you need. People generally want to help – so let them.
On arrival at Manchester Airport the staff were indeed lovely and attentive. We did have one little incident with getting through security. As there were several families also bypassing the main security queue this meant a lot of opening and closing of pushchairs, testing milk etc. I certainly don’t begrudge them this but it did slow the queue considerably and caused Charlie to express some discomfort. Charlie was also made to get out of his disability pushchair to walk through the metal detector which I was then told he didn’t need to do because the staff are trained to recognise special needs equipment. It didn’t have too much of an impact to be fair but I feel it’s important to point out the facts and that there may still be a few teething problems with the “Autism Friendly” policy being implemented. The gate staff spotted us right away and came to speak to me prior to boarding to check whether Charlie would prefer to be on the plane before everyone else or to be seated last. They were kind, understanding and helpful. As it happens, Charlie wasn’t too fussed. In his words he just wanted to “steady, go!” So we boarded, got comfortable (there was actually nobody seated in front of us or next to us ) and prepared for take off. I don’t particularly enjoy flying but Charlie seemed to liken the take off to being on a rollercoaster at Drayton Manor with choruses of “Again, Again!” I sat back. Knowing the hardest part was over.
On arrival in Sardina the repetitive revolving of the baggage reclaim kept Charlie entertained enough until our luggage arrived and then much to his excitement we hopped on a coach transfer to our accommodation. Charlie loves to be driven, he loves to look out of the window and see the world going by. If it hadn’t been for spying a pool at Janna e Sole, I don’t think he would’ve wanted to get off. The complex was really large but it was practically empty at this time of year which was perfect for us and not too overwhelming for Charlie.
It took him a few hours to settle. This of course is the part you can try as much as you like to prepare for but it will depend on your child specifically. I had packed several of Charlie’s favourite toys and snacks. I made sure he could see them in the room and that they were available to him at all times. I showed him where the bathroom was, the pool, the restaurant. It only took a few trips around the complex for him to have it all figured out but he is quite an adaptable little chap these days so it didn’t really surprise me. He grew very comfortable with his accommodation for the week and whenever he had had enough of whatever particular activity we were doing, he would ask to go back there. I suppose having that one designated area where he could relax, be naked and just be away from everyone is reassuring. It certainly seemed to be for him.
So TALKING – very important as we’ve already established. I continued to talk to people about Charlie and his autism throughout the entire holiday. It’s human nature that people stare or are intrigued when they don’t necessarily understand something. It’s taken me a long time to realise that the majority of the time, no-one is doing this to be nasty or to make me feel bad. I’ve developed a pretty thick skin now and I don’t let other people’s opinions have any impact on my happiness. It wasn’t always this way. It takes some work but it’s absolutely worth it. So instead of recoiling or trying to stop Charlie doing the things he likes doing (one occurrence was going up to a man in the pool and kissing his back because he likes bare skin) I just explained to people that he has autism. I spoke about his sensory issues and the fact that he doesn’t communicate conversationally yet…. and guess what……? Everyone was lovely! There are far more kind people in the world than there are monsters. They just accepted Charlie for him and all his quirks. And I’m sure at times they enjoyed watching him having a brilliant time. My point here, I do have one, is that it isn’t just the official people you should talk to in these situations. Talk to everyone. The more we talk, the more we spread awareness and that can never be a bad thing. I like to think that all the people we connected with on holiday now know something extra about Autism. That was Charlie’s gift to them.
And now that I’ve written this I feel like I don’t actually have that much advice. Don’t expect to be seeing Beth’s “Travels with Autism – An Unofficial guide” in bookshops anytime soon. Prepare and Talk makes it sound so incredibly easy when I am well aware that for many families who live with autism, this won’t be the case. The spectrum is so huge and I know that we are very lucky that Charlie can adapt to situations in the way that he does. I suppose if anything, I just wanted to instil that such things are possible. There was a day when I had shelved my dreams of watching this little boy play in a swimming pool or in the waves on a sandy beach. But we made it and he had the most amazing and incredible experience. It’s also made me so much more confident that he is often ready for more than I give him credit for. I hope to fill his future with many more adventures, watch this space.
Love as always
Beth Anne xoxo