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Dear seat 12a

You turn around in the luggage queue and we briefly made eye contact. That was just before another coach load of 18-30 club holidaymakers spilled into the already busy and humid airport ready for their late night flight back home. We broke eye contact as I helped Josh usher Dylan closer into the protective circle that we were enclosing him in, away from the bustle and the noise.

The queue moved slowly and Dylan being tired and disorientated wants to wander out of our protective hold. He wants to sit down and rest his weary legs. The chairs are on the other side of the packed waiting room; Fine for a teenager usually but Dylan’s bright red ear defenders suggest to you that Dylan is not a typical teenager. Again you turn and look and I smile as I meet your glare. You break my eye contact without response and turn back to your conversation with your companion.

The waiting to travel is always long and appears even more so when homeward bound in the middle of the night. The children are slow and tired. The flight is practically boarded by the time we find our seats. I see our seats are directly in front of yours.

The flight home is long and uncomfortable. The babble of aisles of rowdy boys quickly quieten as they all fall asleep. I know Dylan rocked on his chair and that disturbed you resting you head on your tray. I know that he giggled at times and that you heard him loudly ‘shuuush’ in response to my visual request to him to sit quietly. See, he was so tired and so anxious, it was too quiet on the plane and he can’t sleep with the light on; you were reading by your overhead light for the first 2 hours of the flight and he doesn’t understand that he should be trying to sleep even though his seat was illuminated by your bright reading light. By the time you decided to switch your light off and rest your eyes Dylan had passed the stage of sleeping and we were going to remain awake, regardless of how tired he was.

I promise you he did his best to be quiet. He giggles and rocks when he is nervous and I desperately tried to quietly reassure him so as not to over stimulate his already highly anxious state.

Please believe me when I say he did so well, despite him hearing your mumbled comments and disgruntled huffs at him moving the tray on the back of his seat with his rocking. He didn’t respond or allow you to heighten his anxiety further.

I did my best to reassure him he was doing great when the unkind or unhelpful comments you made about him smelling were made loud enough for him and others around us to hear.

I was so relieved and so proud when those aeroplane wheels hit the tarmac back at Gatwick; Proud of Dylan’s resilience and relieved that you and I could get on with our separate journeys.  I praised Dylan openly and loudly in your presence. He did do so, so well, he did amazingly at self soothing and calming himself to be able to get through the three hour flight. The work for Dylan to manage that took more effort and drew on lessons which have been learned over many painful hours to formulate a smooth and socially expectable journey. More time and effort invested that you would ever realise or probably ever appreciate.

If you come away from three hours sitting behind Dylan in an enclosed space and all you have to complain about is the rocking of the seat in front of you – which is only affecting you because you are leaning on his seat – then I am glad. Dylan worked so hard and the journey went so well that we are not going to let you or your unacceptable intolerant ways ruin it for us.

In fact I’m glad he blew off at you.

Oh and I hope you lost your luggage.. 🙂

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Shhhhhhh!!!

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Feeling hot, hot, hot!

A scorching day today. 

Dylan continues to appear to have minimal awareness of how hot he is. He rarely sweats and insists that he sleeps with a thick blanket wrapped around him despite the temperature being 29 degrees overnight last night. 

Dylan is drinking plenty of water but is not requesting any independently and instead relies on us offering him sips literally every 15-20 minutes throughout the day. If he isn’t drinking little and often than he guzzles the water and it ends up making a reappearance leaving him at even greater risk of dehydration. 

We got up late this morning and all had breakfast together instead of mixing and matching between some of us eating and some swimming as we usually do. After eating its a rule that we make all children stay out of the pool for an hour to let digestion settle but today once the hour was up we were even further into the hottest part of day with the thermostat hitting a whopping 39 degrees celcius. 

We used the time together teaching Dylan how to play chase the joker. Dylan’s really good at recognising when he has a pair of matching cards and although he required assistance to take his turn and hold his cards correctly (fine motor difficulties again) he really seemed to tolerate the game. Josh and Grace were really kind and let Dylan pick the cards that he needed for the first couple of goes. 

By the time Dylan got into the swing of it he was winning independently! 

Playing cards is definitely a skill for us to practice and nurture for Dylan to access further age appropriate opportunities and social bonding.

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Parenting win #448

I took the kids shopping last week when usually its Dad who takes them. 

Dylan made me turn back down the beer aisle and pick up a 4 pack. I had to take this pic and ask Dad “Do you usually buy these? Dylan has picked them up and put them in the trolley”. 

Turns out he does indeed buy that brand of beer. Parenting win for Dad! Go Dylan!! 😂😂

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Holiday Prep

Travelling can be stressful at the best of times. Add on the possibility of delays, an unusual environment and lots of queuing  (see previous post) on an annual daily holiday could be an autism recipe for disaster.

Dylan has always travelled. Even from his toddler years pre diagnosis we would pack him and all of his necessities and have a yearly holiday abroad. Sometimes it was good. Sometimes not so. But we would persevere.

‘Preparation is key’ is a mantra I have learnt to live by over the years. The holiday preparation begins about 4 weeks before we leave and isn’t anything too involved but is just enough to help Dylan get through it. In recent weeks I have had messages asking for advice from others with young children with autism. Its taken me years to gather these nuggets of advice and I’m more than happy to share.

Holiday countdown– We have a laminated A5 sheet which has a grid on it. Like a calender; it has the weeks leading up to holiday, the time we have away and a few days after our return. Everyday, often prompted we get Dylan to tick off the day with a permanent marker. 

We do this everyday right up to the day we leave. The grid is something that we take away with us and continue to tick off the days. The day we depart and come home are highlighted on the grid to help give Dylan a concept of time for before, during and after our holiday. We had a hard year a few years ago where Dylan would spontaneously burst into tears. His communication was much more difficult then and we really had to guess what was wrong or how we could help. We guessed that the whole situation was just too much; one day being hauled out of bed, put on a plane to a hot country and not knowing when or if you would ever go home. We also used to refer to the holiday apartment as home whilst we were out and about abroad “Right Dylan we’ve finished at the beach now so we’re going to go home” before we would go back to the apartment. To have this described as home when it’s not the UK home must be really confusing so we refer to where we sleep on holiday as ‘the hotel’ or ‘the room’ to make a clearer definition between the two places.

Swimming aids– Dylan still can’t swim but lives on holiday to be in the pool. Josh and Grace are both proficient swimmers and so will jump and dive into deeper waters. Dylan loves to follow suit which poses a real risk. Swimming aids can be really tough to find as Dylan gets older. Kids armbands pinch his arms and he has so little stability or strength in his arms the he struggles to keep up with them as they float. A year or two ago we brought him a swimming vest which goes up to age 14. It’s a snug fit this year and we will have to find a replacement for the next holiday. He knows he has to wear this to swim, so after a gentle reminder he will go and pop it on before swimming. It’s an obvious sign as well to those unfamiliar with Dylan that he can’t swim and despite his size he may not be appropriate for the usual boisterous water games played by boys of his age.

Marmite, ryvitas and random foods – At home we naturally stockpile items, usually food, y’know in case of a manufacturing delay or some sort of freak weather that means there may be a national shortage of steak McCoy crisps.

Its not the end if the world if there’s no ryvitas at our holiday destination but it sure makes things easier for Dylan to start the day the right way with as close as possible to his usual breakfast of cherry tomatoes, ryvitas, marmite and a large cup of tea. 

Taking extra foods can be difficult if you are not taking hold luggage. Containers must be under 100mls to go through customs in hand luggage. Marmite seems to come in 125mg jars in Uk stores and so won’t be accepted in hand luggage. I even argued with the man that Marmite is not a fluid but the customs officer wasn’t having any of it and I had to get rid.

If traveling from a large airport you can usually buy larger items in the shops once through security. We found a 100ml jar of Marmite in Boots of all places at Gatwick airport. A great find after that sinking feeling of watchng your child’s planned meal’s for the week be considered contraband.

Laminated iPad– Dylans main mode of communication is his iPad and although there’s a lot of waterproof iPad covers available i don’t really want to risk breaking it by having it in the pool. So to overcome this we have screenshots of Dylan’s main pages which are laminated and can then either go in the pool with him or stay on the poolside within the area that would be the danger zone for the ipad. 

This is the first year we have done this, I saw it on a speech and language forum as an option for facilitating communication during those time of sharing moments or making requests in a highly motivating situation.

In addition to this we have produced extra vocabulary on the iPad to help with the new words that will become more useful over the next couple of weeks. Words like beach, suncream and cocktails are not usually required in our leafy hometown so we have these words ready to support Dylan’s transition into his new environment. 

Social stories – In new situations or on holiday the usual reassurance of rules and routines is lost; everyone stays up later, we eat at different times and although enjoyable for most it can be a little unsettling if you rely on routine for familiarity. There are also rules which may not be broken, road safety and pool safety are important and need to be adhered to and a social story can support the verbal message being given. Dylan has an app on his iPad ‘Pictello’ which is really simple to use and Dylan can rewatch the stories to reaffirm the message if he needs to. But social stories don’t have to be hi-tech. Social stories can be made on paper and as the information within them as involved or simple as you or your child needs. Last year we made a social story to help Dylan understand why he couldn’t go swimming straight after eating. We are using it again this year.

Extra straws and comforters – Dylan has hierarchy of straw and their acceptable standards. The straw should be new and barely used. McDonald’s do the best gold standard straws. Other straws are acceptable but the is a fine line between a really used worn McDonald’s straw and one which is in better condition but from a different vendor and only Dylan can make that decision. When these decisions are too difficult we go to McDonald’s and get a new straw. We can’t do that while we are away so we gather a stock of them over time to take away with us which can be brought out one by one as Dylan needs them. Never be caught short without a comforter!

Packing list and discussion about clothes. – Josh and Grace pack for themselves whereas Dylan needs to have his bag packed for him. Dylan is involved in this but often picks up a hoody or tracky bottoms when asked what he would like to wear. Options are given but unwise choices are gently overruled for more tropical-friendly alternatives. 

We talk about how the weather may be different and what we need to take. Holiday shopping such as aftersun and snacks are brought together to help Dylan visualise the future coming event we are talking about. It takes time but doing these things together in the weeks leading make the idea of holiday (which is a really abstract concept) into more of a concrete reality.

Letter of diagnosis – I always take a dog eared old copy of a letter confirming Dylan’s diagnosis just in case. In case of what? In case he melts down, in case of disruptive or socially unacceptable behaviours, in case we find ourselves in a situation where autism can explain it but I need to prove it. Dylan looks totally normal. When I hold his hand in a busy airport, he’s nearly as tall as me and he’s telling me ‘non’ as he wants to go running off to stim at the disappearing steps at the bottom of a packed escalator. It would be totally acceptable for a well meaning member of the public to intercept to ask me what I’m doing holding onto him so tight. Why don’t I let go like he’s telling me to.  That he’s old enough to know what he wants to do and I should respect that. 

This has never happened. But it could and I could need to prove that I am not being abusive but trying to protect Dylan. A high anxiety area such as an airport could exacerbate Dylan’s behaviours or our responses to them. Dylan letter of diagnosis is our only proof.

Airport assistance – Larger UK airports Gatwick, Manchester and Glasgow have all changed practices to offer support to those with autism travelling with them. It’s worth checking with both the airport and the airline to see what assistance they can offer. Gatwick have a lanyard with small sunflowers on it that can be collected from their assistance desk and it is instantly recognisable to all staff yet discreet enough to not be noticed by anyone else. Its use certainly made a difference to our journey this time and it’s worth looking into. I would thoroughly recommend it. 

Preparation is a necessity and it can make travelling with autism possible and great fun. Parental relaxation, switching off and reduced anxiety is not guaranteed but at least you have a change of scenery.

Think of it as a busmans holiday 🙂