Whether they are teenagers or toddlers, as I have already written, one common perception about autism is that autistic people do not like change. In some ways this is most definitely the case, although personally I don't think it is quite that simple - is anything to do with autism simple? Ben has, for a long time, insisted on the same yellow cup, the same yellow spoon, the same bowl, the same bedtime routine.Mr Rigidity himself. If I am silly enough to do something more than once with him in the same way, then I have inadvertently imposed a routine on him (and the rest of us) never to be broken.. .until he decides otherwise. At four years old Ben, though non verbal, would insist that every ornament be in the same place yet didn't seem bothered one iota whether I had moved tables, chairs and sofas around. Now he has changed. The ornaments are commented on (with words now) but not worried about, yet any change of furniture would cause a spinning, flapping panic. For some reason known only to Ben, he will now eat only out ofa Tweenies bowl and with a Tweenies spoon and fork, and the yellow ones have been abandoned. Such instances have taught me never to make judgements about how our children will react to any new situation - they may well surprise us.
One situation that most parents of autistic children worry about and dread more than most is the idea of going on holiday. Such a paradox - parents and siblings of autistic children need a change in routine, a break from all that life with children throws at them, while autistic children need routine and sameness! The idea of taking the children on holiday has always seemed an unreachable goal, yet I am living proof that even such seemingly arduous tasks can be achieved and even enjoyed.
On 11 September 2002, I took all seven children to Florida. What on earth possessed me to even contemplate, then take on, such a mammoth task I will never know! Well that is not strictly true -1 had a television company to thank for this little escapade. The television company wanted us to go to London so that they could film all of the children together...the journey was horrendous! The seats I had booked in advance on the train had mysteriously been taken, Joe was wild and hard to control and sound-sensitive while Ben screamed hysterically. Luke seemed to undergo some uncanny metamorphosis whereby one minute he was a pale, quivering boy, obviously struggling with some of the more difficult aspects of Asperger Syndrome and launching headlong towards a full-blown panic attack, and the next he was giving Sarah a tremendous run for her money in the typical sulky teenager stakes! Rachel in her usual fashion was far too concerned with whether her hair was out ofplace, her nose was shiny or she had chipped a nail to worry about the practicalities ofdealing with her AD/HD and autistic brothers, and Anna was merely revelling in the fact that at each train station we were unfortunate enough to have to get out there was a snack shop which sold sweets. Poor Sarah tried very hard to will a hole in the ground to swallow her up and Matthew, as always, had adopted the father role and was busy bossing and organizing (read for that antagonizing!) them all. The wheelchair/buggy wouldn't fit in the aisle, Ben wouldn't/couldn't walk and the entire journey was the stuff nightmares were made of! With delayed trains, time added for chasing after Joe or having to leave one train and board another in order to find seats, the journey took nearly nine hours.
After finally arriving home, getting most ofthem to bed, and collapsing in an exhausted heap, I sat and basked in a feeling of amazement and pride at the fact that I had survived to tell another tale. Strangely enough, that mixture of exhaustion and exhilaration convinced me that I was Superwoman and I could indeed conquer the world! With that in mind, I sat at the computer wondering where my next destination could be. Today London - tomorrow who knows? Within an hour of trawling the internet, I had booked a fly drive holiday to Florida for two weeks!
A word of advice to any other parents who have recently overcome a difficult situation with their children.. .pat yourself on the back, have a well deserved drink and think long and hard before acting on impulse! Nevertheless sometimes such impulsiveness makes things happen that would otherwise remain a dream. For us, a holiday to Florida was one such dream.
Whilst away, I kept my sanity by writing brief diaries of each day, so I have included a few entries of our time away in the hope that it may inspire any of you contemplating a holiday to realize that it can be done. Ifnot, then at least it can provide some entertainment whilst you sit and breathe a sigh of relief and be glad that it wasn't you!
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Whenever a doctor informs the parents that their child is suffering with Autism, the first & foremost question that is thrown over him is - How did it happen? How did my child get this disease? Well, there is no definite answer to what are the exact causes of Autism.