Tuesday, 10 July 2018

Holiday travel with Pathological Demand Avoidance (type of Autism)

Holidays and travel can be particularly tricky for families living with children with Pathological Demand Avoidance.

I've seen a couple of posts on social media recently about travelling with children with autism, most specifically around airport assistance. A lot of that information is very relevant and helpful to those with PDA, so I wanted to share it along with some of our own experiences. I thought it was worth offering some quick tips to help with holidays too, although I'm very aware that I am by no means an expert. I stand by the saying that every autistic child is unique, and there is no 'one size fits all' strategy. Each child will find different aspects of life and travel challenging, but it could be that one of these tips prompts an idea or a different way of doing things.
Stephs two girls pulling faces in Spain
Having fun in Spain in 2011
I have been lucky enough to be able to enjoy overseas holidays on a fairly regular basis; my own father was in the Merchant Navy and so as a child I got to travel far and wide around the world. As an adult I craved the slightly warmer weather guaranteed abroad and I loved visiting new places so I made sure I could travel further away at least once a year. I always appreciated this opportunity to see the world and so wanted to carry it on with my own children. 

Our holiday travel experiences

It's funny how lots of the pictures I have of Sasha on our early holidays show her pulling a face like this:
Sasha looking grumpy in the sea
France - the sea wasn't quite this brown in reality!
However there were smiley ones too, especially when she was swimming - she's always been a water baby:
Sasha looking happy in pool aged 2

None of our holidays have felt easy, or relaxed, but then you don't expect them to be when you're with a toddler. I think we always thought the holidays would improve as the girls got older, but that's not been the case.

We first took the girls abroad in the summer before Sasha was diagnosed with autism. That holiday was to France, and we travelled with our own car via the Eurotunnel. Although we didn't suspect autism at that point, the travelling certainly wasn't easy; Sasha screamed herself sick when strapped in her car seat for the last 15 minutes as we exited the train. We had a planned stop overnight in a hotel in a small French town which we had never been to before (and are unlikely to return to!). I vividly remember pushing Sasha on the pavements in the stroller to try and settle her at bedtime, and her directing me by pointing along roads away from the main stretch. I found it slightly amusing but also puzzling that she seemed to know where she wanted to be even though we'd never been there before. Looking back, I think both these 'happenings' could have been flags for Pathological Demand Avoidance if I had known about it at that point.

We continued taking a holiday abroad every year after that, but we switched to flying so we could go further afield. Although I don't remember the first time we flew with Sasha, I probably was a little nervous. More so because I remembered only too well being in floods of tears the first time I flew (alone) with our eldest girl, as she had that terrible pressure pain in her ears and screamed for the whole half an hour of landing! So I was probably expecting similar from Sasha. When it all seemed to go well, I was relieved.

Further trips via airports had mixed results, but one thing which did really help was when we realised that there were systems in place for helping autistic passengers. Most of the UK airports now have guides and systems such as fast track routes to avoid the stresses of waiting in long security lines and busy places; airports abroad can be very hit and miss with their help.

There's a great up-to-date list of which airport offers what in terms of assistance over on the Airport Parking & Hotels website. For more specific info, look at these online guides produced by some of the bigger airports:

Manchester airport
Gatwick airport
Birmingham airport
Heathrow airport
Stansted airport
Luton airport

We carried on holidaying abroad with friends up until the point when we were lucky enough to book a dream big trip to Disney Florida three years ago.
stephstwogirls in front of Disney castle

The Disney holiday wasn't exactly a roaring success (which I won't go into here but you can read my post 'The Magic of Disney') and it was also a turning point in the planes and flying situation. It was the first time that Sasha reached for, and read, the safety card from the back of the seat in front, and I could see her mind working overtime as she looked at the images of the face masks and chutes from the plane. She wasn't great at conversation (still isn't) but managed to ask 'Why? Why would you need that?' and when I tried to explain in fairly innocuous, non-stressful language, I could see her brain cogs turning even more. She didn't move from her seat once for the whole 7 hour flight; her anxiety about travel and the 'what ifs' had clearly kicked in. 

We did of course manage to get her on the plane back home from Florida, but she was adamant that she wouldn't fly again. The following year we booked to stay near Paris, so that we had the option of car and ferry or train travel, but as it happened Sasha went into hospital and so we had to cancel our holiday. For the next year, I was keen on travelling a bit further to ensure we were guaranteed that sun at May half term time, so we looked at the south of France and convinced her that she would be OK with flying. I did a lot of research and made sure our travel times to and from the airport either side were kept to a minimum, as Sasha also finds any long car journeys stressful. We stayed at the Eurocamp Le Brasilia site and enjoyed a week's holiday before having to fly home. Sadly, there was a thunderstorm as we were due to leave France, which meant our plane was delayed coming in (waiting is never good for Sasha) and we were almost delayed again after boarding the plane and waiting to take off. The storm also played into Sasha's fears about natural disasters and flooding. That trip home was not so much fun, I'll be honest!

Since then, Sasha's fears about lots of things have been worsening, and flying is not something she was open to the idea of. We booked for France again this year (still clinging on to the dream to be abroad!), travelling by car and Eurotunnel. I'm currently at the second stage of planning, which leads me on to my first bit of advice. 


Holidays Tip number 1: Prepare

Sounds obvious, I know, but I thought I'd put some examples behind this. Tanya from Mummy Barrow was so kind to interrupt her recent day trip to send me some videos of what it is like to actually drive onto the Eurotunnel train in a car. These clips have already helped Sasha massively to get an idea of what must be a particularly strange concept to a lot of young children (and some adults!) - a car, on a train?! Our eldest was lucky enough to go on a school trip to France at Easter and so we have extra ones of her coach boarding too. We'll show them to Sasha again the day before we leave just to refresh her mind.


visual timetable for daily activity
When Sasha was younger, we would put together visual boards (actually just laminated sheets of A4 paper) with plenty of pictures about our holidays. The car we would travel in, followed by airport check in desks, baggage carousels, security x-ray machines, plane seats, hire cars, apartment and pool etc - as much as we could, to prepare her for what was ahead. I've trawled our computer but sadly can't find the exact ones we used - but imagine the above, which was a daily plan we had, but with holiday related images on such as the ones below:
Images to do with travel

Visual images still help massively so although we don't go in for quite as much detail now, there's still pictures to show - after all, we all like to see where we're going to, don't we?! Emily from This Little Boy of Mine blog actually visited the same places in France that we are going to, earlier this year, and very helpfully sent some of her family snaps over - everything helps!

So knowing what to expect really helps, and running through timelines for travel and calendar dates if you have any activities or day trips planned when there is also worth its weight in gold.

Holidays Tip number 2: Don't expect too much!


Following on from the comment about day trips.... I think there's social 'norm' expectations which are all about having fun on holiday and doing things you wouldn't otherwise do, whether that's watersports, sightseeing or building sandcastles. These don't necessarily suit all our children, so it's about finding and planning what's right for them. 

Over the years, we've learnt that we've needed to drop our ideals as parents. What we would like to be doing on holiday (sunbathing on a beach with an ice cold drink) is a distant memory and we just focus on what is right for the girls. If that means a week away without exploring further than five minutes from our accommodation, then that's what we do. We live in hope that their idea of fun and ours might meet at some point in the future! Tamsin is much closer to this than Sasha is likely to be for a while yet. This kind of experience could match that of many families of course, but I think the point is that for those with children with additional needs, this might happen much later or not at all. Time will tell. In the meantime, we've realised that to have a good holiday ourselves, the girls need to be having a good holiday. So it's a case of letting go where necessary.


Holidays Tip number 3: Arrange some 'me time'


Holidays are the nations way of relaxing and regrouping; switching off from the daily humdrum of life at home. This is almost impossible to do when you are on tenterhooks, walking on eggshells, waiting for the next thing to go wrong - as so many of us living with PDA generally are.

If you're going to regain energy, you need to be able to switch off too. Kids clubs are not impossible for all children with PDA, but I'd hazard a guess at unlikely for most. For some, you should take the option to leave your child with your partner/their 'other' parent, even if that has to be with strict rules and strategies (for the parent/partner to follow, not the child!). I feel for single parents travelling with younger children and wish I could help - in this case I'd suggest doing whatever it takes to find your peace, as long as the children are happy, whether that's long siestas or leaving them with an ipad for longer than you otherwise would. You're on holiday, you're not allowed to feel guilty about it!
Stephs two girls happy on a beach
Fun times on the beach.. wouldn't happen these days!

So that's our holidays in a nutshell. If anyone has travelled via the Eurotunnel with an autistic child and has any top tips or photos of the services area, please do let me know!


stephs two girls happy by pool
Told you - always happy with a pool!




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