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!
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?
He walked up and down that decking with flags:
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!
(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)