Extremes of emotions on holiday

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We all experience emotions all the time. And children with autism are no different. But where we can usually calm ourselves down when angry, understand the need to slow ourselves down and end a game rather than becoming hyper or even soothe ourselves when sad, this is an area where people with autism can so often struggle. They find regulating emotions so difficult and can often swing from one extreme emotion to the other very quickly leaving everyone around them puzzled and confused.
This week I have seen this become an every day reality in my non verbal son. We have been on holiday this week in a caravan. No matter how hard we try, his routine has had to change. There is no school on holiday and at times this has been a massive challenge for him. He has used the iPad to show me pictures he has found of anything school related in an attempt to question why he isn’t going there. This is not helped at all by the fact the only thing he will ever let us dress him in is his beloved school uniform. He doesn’t ‘do’ holidays. He ‘does’ school. So even in a caravan 50 miles from home he has still been looking for his school taxi and pointing to any similar looking car we pass and screaming.
Every day has been like walking on a tightrope. He doesn’t ‘do’ wind down and chill. He does ‘get up and go’ from the second his eyes open to the second the melatonin finally kicks in and he drops off for a little sleep. And for a non verbal child he can be extremely demanding and loud.
Internet is limited where we are. And boy has he let us know how this has frustrated him. His favourite interests on the iPad are you tube videos of lift doors opening and closing over and over again, and google maps. And he has been most unimpressed that you tube and google do not work as he expects them to. You can’t explain terms like signal or coverage or wifi to him. All he knows is he presses the buttons and mum makes them work. So mum is at fault. And he then throws the iPad at me, scratches me, bites me, hits me and screams. Holiday? What holiday? Autism doesn’t take a holiday.
So you take him out and keep busy. But this isn’t the swimming pool he normally goes to. So you have to literally drag him screaming through the corridor to the changing rooms because he does not understand that other places can also be swimming pools. And he screams at the look of the different changing rooms. And I start to question if all this is worth it. The moaning, the screaming, the ‘challenging behaviour’ seems endless.
But then he gets in the water and immediately changes to the hyper, laughing, splashing, happy boy. Within seconds it was like someone switched my son. From one extreme emotion to the other just like that! And then getting out he switched right back, instantly his body got out that water.
The same with soft play. He loves soft play. But nope, this isn’t soft play to him. Because it isn’t one of the ones we normally go to back home. So you pay money to carry in a screaming five year old while everyone looks at you and quickly turns away. If only this child would wear his autism t-shirt at least now and again. But no, he has to wear his school uniform which just somehow makes it all look worse. It must look like I am manhandling a child on some school trip to the seaside. Who would believe we are actually on holiday trying to have some down time? But once in and he realises that this is a soft play, the tears stop, the flapping and chest beating starts again and he giggles like he is the happiest child you ever met. If only the scratches and pinches he gives me could vanish as quick as his tears!
Going anywhere in the car this week has seen him in default mode of whine. ‘Uh, uh, uh’ has been on constant play since the minute the car pulled up to the caravan park. It is a dull moan of wanting attention, of saying in his own way that things are not ‘right’ for him, of making it clear he isn’t happy. But the whining barely stops. So you would think this child was hating being in the caravan on holiday.
Yet one minute later he is out on the decking flapping, running up and down, laughing hysterically at a dog barking or cow mooing. Or waving his arms in complete ecstasy because he is being pushed in a swing. There is no in between just now.
So I feel like I am on that swing too. Except it never stops. We have the highs of laughter, hyper ness and flapping and chest beating followed immediately by screaming, moaning, scratching, kicking, pinching and throwing. We have the sheer innocent excitement of seeing the seaside followed immediately by the danger of him running straight out to the sea. Unless he is strapped in a car seat, buggy or swing there is no sitting down. There is no watching a dvd or looking at books, or colouring in like his twin sister. It’s just all about him. It’s all go. It’s exhausting and draining. For everyone of us.
In fact I need a holiday to recover from the holiday! Autism doesn’t take a holiday. It is extreme one way and extreme the other. Isaac can’t regulate his emotions. And right now I am struggling too. If you asked me how the holiday was going I would have to answer with ‘sometimes wonderfully, sometimes dreadfully.’ If only there was a happy medium. Now that really would be a holiday!

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We went on holiday…and autism came too!

Ah, holiday time. Time to get away from all the stresses in life, chill out, relax and get away from it all. Ermmm…I am a parent carer of two children with autism so I went on holiday..and autism came too. Very few people would dream of taking thier full-time work on holiday with them but I had no choice. There is no respite breaks and no other family came with us to allow us time away from the 24 hour needs of the children. There was no holiday from sleepless nights, 4 am rises, sensory issues, communication difficulties and obsessions.

But we had a great time and made great memories. And I treasure time spent with my children however hard and challenging it is at times. And it really was a break from constant visits and appointments with professsionals, dealing with letters and daily phone calls and chasing up never ending referrals and such like. For 7 days we were not fighting for our childrens rights, not doing some sort of therapy or other with them, not preparing them for the next visit or appointment or filling in any paperwork about thier ever changing needs. For 7 days we were just mum and dad. And that was a holiday enough.

We had to choose our holiday carefully though. After all autism was coming too. No loud evening entertainment, no waiting on planes or trains, no visits to theme parks with loud noise and flashing lights to trigger seizures. No sailing or open seas for Isaac to dive into, no hotels full of people to complain about his sceaming. Nowhere too isolated in case of medical emergencies (Isaac has pica where everything goes into his mouth, seizures that could at any time requiring medical care and tumours, so we always google the nearest hospital anywhere we go) but nowhere too busy that crowds and noise would be an issue. Oh, and even for 7 days Isaac would still require his own bedroom. So we settled on a quiet caravan park…well, quiet until we arrived that is! It is one of lifes ironies that my children do not tolerate loud noise but yet their screams can be heard for miles around!

So what is the first thing you do when you arrive at the caravan? Put the kettel on? Unpack? Have a good nosey around? No when you have autsim you might do what Isaac did…lick the caravan!

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And as you can see he had flags with him too. His current fixation is things on sticks. Lollypops, icelollies, flags (especially flags!) and umbrellas. It all goes hand in hand with his utter fixation with straight lines. So you can only imagine his absolute excitement and joy when we drove up to the caravan to see it had decking…rows and rows of neat straight lines. Boy, he could have spend the entire week on that decking come rain or shine. It really is one of the delights of this child that something so simple, something we would hardly even notice can bring him such joy and amazement. It is one of the most enteering aspects of his autism/learning disabilities and neurofibromatosis type 1 that for all his difficulties, he can actually at times be so easily entertained.

He sat like this for hours, cuddling his favourite blanket and running his hands along those beautiful and fixating lines. Who needs kids clubs and expensive enterainment?

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He walked up and down that decking with flags:

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ImageBecause you don’t get a holiday from autism. You go on holiday…and autism comes too!

But we went swimming, we ate out (ok so mcdonalds and pizza hut and a fish supper at the beach count right?), we went to soft play, we went shopping and we even went to the local police station!

Yes, my anxious and sensitive daughter got very upset when we went to a local swing park and found an abandoned cuddly toy dog. She creid bucket loads at the thought of this poor dog being left out in the wet and cold at night without a child to cuddle it and she was equally insistant that the ‘rules’ are you must never take anything that isn’t yours. So mum’s solution was a little trip to the local police station where a kind and perplexed policeman was happy to reasure my tearful daughter that they were well used to looking after dogs (I am pretty sure he meant real ones but don’t tell her that) and that lost little puppies were usually claimed very quickly. It might have been nothing for that policeman but boy have we heard the story of the lost puppy in the park over and over and over…mummy does it have a little girl or boy yet? mummy can you hear it barking? mummy how sad it would have been if I didn’t find it? 

Yip, autism came on holiday!

And autism came home with us too. And it screamed when we came in the door. It seams they preferred going back to the caravan than a house full of toys. Or maybe my boy missed that decking and it’s awesome straight lines? Or the life size plastic ice-creams outside shops that he screamed and strectched his hand out for everytime we passed them (perhaps the seaside has it’s diasadvantages after all!). Or maybe they just liked us being mum and dad for 7 days. But most of all I think they just miss being children and not being constantly talked about, dragged to appointments, watched and assessed and having to perform and work with people or thier agenda all the time. Sometimes it is nice to just sit down, cuddle your favourite blanket, suck a pacifier and watch a dvd. After all even autism needs a holiday! 

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(P.S. Don’t ask the kids about their holiday. Isaac is non verbal and Naomi will only tell you about the night she had a nose bleed, the nightmare she had about a cow coming into her room and that story about the lost puppy at the park! She might also tell you about the fact she was in a magazine too which is also true but she won’t belive you if you tell her you have seen it as she only thinks it was in a magazine at the seaside! For those of you in the UK her story appeared in take a break magazine this week)