Don’t ever give up hope. That’s easy to say (now) but I can’t lie - two years ago I felt very little hope in terms of what our family life was going to look like. It seemed extremely unlikely that it would resemble the fun filled life we used to have, the life where we travelled for family holidays and numerous days out, experiencing new locations together.
Yet here I am, sitting on the jetty of a pretty little boathouse in Sweden, listening to the waves lapping against the shore and watching my boy jump from the end of the neighbouring jetty. Time and time again. Grinning and giving us a big thumbs up each time he emerges from underneath the water. People talk about someone “living their best life” and I think that’s exactly what Jamie is doing right now.
Open water swimming used to be one of Jamie’s favourite activities but burnout put a stop to that, along with many other things he had enjoyed. So to watch him rebuild confidence in the water, little by little, until he was confidently jumping in, has been truly precious.
I’ve already shared our experience of Autistic Burnout and how it altered our lives. We’re by no means “out of burnout" but I do believe that Jamie is in recovery. We’ve come such a long way, and today I’m writing to show that there can be recovery from autistic burnout and life can be wonderful again - maybe not all the time but certainly at times.
While we were in our dark days, I was desperate to read the experiences of others facing similar challenges, seeking reassurance that we weren’t the only ones. I had not been prepared for the overwhelming response from people who read my account of our experience. Those messages are the reason I felt compelled to write today’s piece. While we seek comfort in knowing that we are not alone in our troubles, I think we also look for further comfort in some indication that there is hope - light at the end of that dark tunnel.
Please know that I’m not writing to boast and tell you how we’ve made it through and emerged on the other side. I don’t for one second think that this spells the end of the tough times. I’m well aware that this time next week we’ll be back in the UK with the first day of the school term looming darkly over us. What we are experiencing this week is a much needed reprieve and, equally important, further indication that burnout is not going to be the victor in this battle. Our boy is.
The evening before flying to Sweden we found ourselves basking in that special “We’re going on holiday tomorrow” feeling. (Yes, I did sing Summer Holiday even though they begged me no to!) I think we’d all forgotten how much pleasure came with the anticipation of a trip that we were all about to share. However, jetting off on holiday now is not the same, not quite so simple, as it once was for us. Mixed in with the excitement is a whole lot of anxiety about many aspects of travelling.
Even the selection of a holiday destination requires a greater level of consideration than it would have previously. Luckily for us, there was no decision to be made. It wasn’t so much that Jamie was keen to go on a holiday for the sake of going on holiday. He wanted to return to a place he had enjoyed when he was younger. Familiarity is important to Jamie, as it is to many autistic people, and he has such fond memories of Sweden where the draw is the opportunity to spend time with extended family and spend time in the water. Fortunately, the feeling is reciprocated and we were in the fortunate position of being able to take my brother and sister in-law up on their invitation to spend time at their family summer house with them.
This year we are staying in a new house which had not been built when we last visited. So months in advance of our visit, Jamie’s uncle sent a video tour of the accommodation, allowing Jamie to visualise where he would be sleeping.
We were very hopeful that once we arrived on Ignarö, the island we are staying on, we’d be able to keep stress to a minimum. But first we had to get there…
Before booking our flights to Sweden I had done a trial flight with Jamie from Edinburgh to London for a weekend with family. I had been pleasantly surprised by how straightforward it was to arrange Special Assistance for our Easyjet flights. Being able to wait in a designated quieter seating area and board the plane last helped Jamie to cope with his first flight in several years. We were provided with a sunflower lanyard (which I wore because Jamie dislikes how it feels) and it was reassuring to know we were signalling to staff that we would appreciate patience and understanding at some of the more stressful points in navigating the airport.
I usually thrive on the buzz of an airport but it’s a very different experience flying with someone who finds the airport stressful and overwhelming. Rather than browsing duty free and people watching, I found I was seeing the whole airport as I imagine Jamie does so was instead focussed on seeking out quieter areas and trying to read Jamie’s stress levels. Adding to my apprehension about this trip was the discovery that Special Assistance varies greatly between airlines. While I had found the category description for Easyjet quite offensive, we had at least been able to arrange the assistance required. I was disappointed and shocked when I tried to arrange the same through Norwegian airlines to be told that the only assistance they would offer was a wheelchair or permission to take an assistance dog on board! Much website scouring and two phone calls confirmed that there were no accommodations for autism or neurodiversity. I can’t say the Sunflower lanyard garnered any extra patience or understanding as we went through security this time, despite me explaining to an impatient officer that the lanyard was actually for Jamie!
We had to just make the best of that less than ideal situation and do all we could as a family to help Jamie feel less anxious. He spent months planning which movies to download and his movies and books as well as his sister’s banter occupied him and kept stress levels manageable for the majority of the flight.
On landing, Jamie was keen to get out of the airport quickly and the next part of the “Get Jamie to Ignarö with minimal stress” plan kicked in. As advised by our Swedish guide (auntie Anna) we took the Arlanda Express train into Stockholm Central Station where Anna met us to drive us the rest of the way to the house. Much thought and discussion had gone into the best way to transport Jamie from the airport to Ignarö. Hiring a car, as we had previously done, had been ruled out on account of the busy courtesy bus and queues at the car pick up point, followed by the car journey. To be picked up at the airport faced the risk of getting caught in motorway hold ups and an unpredictable journey time. So, while conscious that the train itself would be an extra hurdle, it was settled on as the easiest option. We had practised some train journeys in Scotland and Jamie’s love of reading kept him nicely distracted.
So here we are, approaching the end of our stay and I think we can say it’s been a success - a good experience for the whole family despite (or should I say, thanks to?) all the extra considerations and some adaptations we’ve had to make, just as we do at home.
We’re very lucky to have our own accommodation here so although auntie, uncle and the little cousins are right next door and we have meals together, Jamie always has a quiet place to retreat to when he feels the need. Perhaps even more importantly, we are here with people who love Jamie and understand that sometimes he needs to be able to do his own thing. My brother and sister in-law have taken time to help the rest of the family to understand autism and Tourette's and everyone here has respected Jamie’s need to sometimes sneak away and have quiet time or eat something different to everyone else. While the rest of us have embraced the opportunity to enjoy traditional Swedish cuisine, Jamie has been able to relax about food, safe in the knowledge that his favourite foods are always available and our hosts won’t be offended if he doesn't join in with meals.
Some home comforts have come in the form of Netflix. When not outside entertaining his cousins or in the water, Jamie has resorted to watching one of his comfort shows just as he does at home. Regular updates from our friend who is looking after Toby dug help him to cope with missing his dog, as do the two labradors here who he seems to have struck up special friendships with.
I had desperately wanted this holiday to go well. It’s taken such a long time to be in a position to try a family holiday again and I think it would have been really upsetting to all of us if this had been unmanageable and become a final holiday. But I hadn’t dared to dream that it would go this well. I really want to put in the caveat, in particular for families who are struggling just now, that it has not been as easy or as relaxing as previous holidays. I always knew that although we would be in a different location, my main focus would be on ensuring that Jamie was coping and facilitating his needs.
That has indeed been my main focus but it hasn't stopped me from feeling relaxed at times and happy to be here with my family in a truly stunning location. And it’s hard to put into words the feeling of utter joy as I’ve watched Jamie and his sister and cousins having fun in the water. We’ve even attended a traditional Swedish Crayfish party where Jamie coped amazingly well with being in a room full of people he did not know. He took on the role of photographer and did a smashing job of capturing the vibes of the night. That night was so special to me - I’ll never take the experience of all four of us being out, socialising and having fun together for granted.
Let’s be really honest here - it’s not all been a breeze but we’ve managed by making sure Jamie knew he was never under any pressure. He wanted to try helping with a food shop at the local supermarket but almost as soon as he stepped into the store it was too noisy and he disliked the unfamiliarity. So he went to wait outside with his dad. Some meal times have been too much for him but he’s been able to take himself off for some quiet time, often with the family dog, Penny. Sleep has been hit or miss. A beautiful evening on the jetty watching the sunset with the rest of the family came to a bit of an abrupt end for me when Jamie needed to get back to the house and chill with the tv. But rather than mourn missing out on the sunset, I’m grateful for the day we’ve had - helping uncle Ewan with some demolition, more fun in the water and a family BBQ on the jetty. All things I couldn’t dare dream of this time last year.
We still have a flight home to face but I know that getting home to his beloved Toby dug will be a huge incentive to get on the plane. And Jamie is already talking about coming back to Ignarö. We hope that rediscovering his love of water will be an incentive to get out a bit more once we’re back home, but we’ll have to wait and see.
For other families contemplating travelling with a neurodivergent person, there are some great resources to support the planning. I hope the successes and rewarding moments outweigh the trickier moments for you as they have for us. There will be people reading, I’m sure, who are not yet able to get their child out of their own house, nevermind to another country. My advice to you is to let time be a healer, let your child set the pace of recovery….and never lose hope.
If you’re considering travelling with a neurodivergent person, check out these links:
Autism Family Travel Guide - tips and tools for travelling, also worth following on Instagram
The Autistic Traveller - advice on coping with airports and flights
For more information about Autistic Burnout have a look at these:
Autistic Burnout - my blog about how Autistic Burnout changed my life
Understanding Autistic Burnout - National Autistic Society website
It seems like you had a beautiful time at Ingarö! It makes me happy that your son already likes it so much. You are doing an amazing job taking care of him and your family! You are an inspiration to us all 💖
You are such an amazing mom, with a beautiful family! I find you and your family so inspiring. We can all do hard things even when it seems impossible.