11 September 2002
Well this is it - D-day has finally arrived! I had phoned the airline and warned them of my children, arranged their diets, arranged extra leg room and special assistance, and all in all I was feeling fairly well prepared.
Arriving at Manchester Airport I was firmly convinced that I was going to park the carand stroll a few metres away to ourterminal. I had been told that I would then be met by an assistant who would aid me with the children, luggage, etc. - sounds perfect...how
naïve am I? After driving around and around the car park because the disabled spaces were all taken, I managed to squash the car in beside a bush. Matthew decided to assert his authority and do a grand impression of an airtraffic controller by frantically waving his arms around and shouting, in a bid to direct me into the minute parking spot. Once parked, I then launched myself over the back seat (I was too close to the next car to open the doors), providing a very inelegant view for passers by, then wiggled my way in between the children in order to provide instructions as to who looks after who and who carries what. Breathing in deeply and forming a chain to carry the baggage over our heads, we managed to unload ourselves and the luggage out of the car, unfold Ben's wheelchair, place him in it, attach Joe to his wrist strap and proceed to the bus stop. ..so far so good! A bus appeared minutes later, and we set off forourtwo minute ride to the terminal (delightfully accompanied by a heartfelt and deafening rendition of 'We're all going on a Florida holiday' by Joe).
The children got off the bus in their own particular ways. Sarah looking awkward and sulky, Rachel wiggling sexily and stopping to check her make-up, Anna giggling and flicking her hair in an attempt to emulate Rachel, Luke looking pale and close to tears, Joe bouncing like Tiggerand chattering incessantly and Ben with his fingers in his ears, screaming that he "hates this house"! Matthew led up the party with a stream of orders and commands still, at eighteen years old, not realizing that his brothers and sisters do not take kindly to being ordered around in the way that he does his Marine Cadet troops!
Checking in forthe flight was not much better. Joe became terrified that the security were going to shoot him and ran away to crawl under a table. I instructed Matthew to gather tickets and passports together whilst I signed and showed pictures to Ben to explain what we were doing. Having appeased Ben's worries, I then subjected innocent security guards to a barrage of questions from Joe. ..I am not sure who was most intimidated!
Finally having made it through the check in, after having to wait over half an hour whilst the security phoned the travel company who had made a mistake and printed the wrong initial on one of the tickets, the children all scattered in opposite directions, eagerto spend some of their money their aunty had given them. I managed to retrieve Joe from the checkout just as he paid for all sorts of forbidden sweets and turned to give a stern talking to the girls who had promised me that they were looking after him whilst I sorted out a hysterical Ben. ..howeverthe girls were nowhere to be found! Luke, of course, was where I expected him to be, totally absorbed in a computer magazine, oblivious to the fact that he had a large queue behind him. I hurried him along and left Matthew with Ben whilst I searched forthe girls. A minute later I spotted three armed security seemingly questioning you guessed it - the girls! It seems that Anna had abandoned her hand luggage in her excitement to go and buy sweets and Rachel and Sarah had gone to retrieve it at exactly the same time as armed security had the same idea in mind. Rachel was flirting shamelessly whilst Sarah looked sullen and Anna terrified. Rounding them all up again, I breathed a sigh of relief that it was at last time to board the plane.
We have eventually boarded the plane and I have to say, awful as it sounds, that I can't help but cast envious glances at anotherfamily with a young girl with cerebral palsy. This little girl's disability is glaringly obvious and the staff and other passengers can't do enough to help herand herfamily. On the other hand, I am on the receiving end of glares and tuts as Joe interrupts everyone's conversations, Ben strips naked and drops to the floor in a hysterical screaming fit and Luke chatters insensitively about the makings of bombs (we travelled on 11 September 2002!).
Three hours into the flight and I have already given up counting how many times I have said, "Joe stop it" or "Joe sit down". The air hostesses are now wise to the fact that Joe reacts to certain foods, as he boarded the plane as an amusing, rather noisy and fidgety child and now, after lunch, he has suddenly turned into a rude, wildly hyperactive, destructive little monster. I have lost count of the number of times I have retrieved him from the back of the plane where he has been spinning an elaborate yarn in orderto con some ice cream out of the air hostess.
Thirty minutes into the flight and Joe has tied the sets of headphones around the wire linking the remote control to the seat and pulled the foam off every head set he could get his hands on. The goodie bag, so kindly supplied by Virgin Atlantic, has been put to good use by Joe as he smears the toothpaste on the windows, the pen has been used to dig a hole into the back of the seat in front and then plugged up again by ear plugs (I suppose he did try to disguise it by using a matching colour!) and the note pad has been ripped into tiny shreds and used as confetti (coupled with an ear splitting version of 'Here comes the bride') overthe courting couple behind us!
I have to say that I am pleasantly surprised and amazed at how well Ben is dealing with the flight. I had carefully shown him pictures of planes and done all I could to prepare him for what was to come, but apart from take off, where he struggled with popping ears, Ben has adapted so well and has been happy to play on the games console, eat as much as he can and generally do his own thing. All in all far better than I ever anticipated...so far so good!
Having had precisely one hour and fifteen minutes sleep the evening before, (excitement kept them awake even more than usual) then setting off the next day at 6am, travelling forovertwelve hours and dealing single-handedly with each child's fears and confusion, I am now totally exhausted. On finally arriving at the villa, I have unpacked the boys' clothes, acted as referee whilst they all sort out who sleeps where, tried to console a distraught Ben who has just realized that there is no computer here...and now I need some sleep. Not so it seems! I have now been in bed with a squirming Ben for one hour. When asleep, Ben does an admirable impression of the hands of a clock. Starting at 'six O'Clock' we are both lying parallel and comfortable. Suddenly I get his feet in my face as he turns to 'quarter to three'. I then have to root under the covers to pull his head from by my feet as he reaches 'twelve-thirty'. Next I suddenly get head butted as he reaches the 'quarter past nine' position. He then settles, ready to start the whole pattern again. ..and people ask me where I obtain all my bruises from! As I sit here watching Ben and listening to the snores of the other children, I can't help but wonderhow I am going to survive. Oh well -onwards and upwards. I wonder what morning will bring?
Walking around Disney World with Joe jumping around, chatting to strangers and climbing on the forbidden areas, Luke analysing every piece of technology and giving a blow by blow account of how it works, whilst Ben sits hunched over in his buggy with his fingers pressed tightly into his ears, I am acutely aware of how 'normal' they look but yet how different their world really is. Forthe first day or two I could feel myself sinking into the familiar depression as I looked at 'normal' families doing 'normal' things. Goodness Jacqui, get a grip! What is 'normal'? Who knows others'
home lives, needs and feelings and who says their 'normal' is superior to ours anyway? I will learn from Luke...different is cool! Even so I am finding it hard to stop comparing. The older children are enjoying themselves and having the experience of a lifetime, Ben is coping, the weather is beautiful and I am extremely lucky to be in this situation...so why do I feel so down?
Well good morning to you too Ben! I have just been woken up at 2.45am to the familiar, though not so pleasant, smell of poo! The smell seemed to be coming from right under my nose...in fact it was literally under my nose - Ben had stuck his hands down his nappy and wiped it all over my face whilst I was sleeping! One shower later and I have managed to settle Ben back down to sleep. Not so for me. I am having great difficulty sleeping here in Florida because I cannot seem to shutdown my 'boy radar' at any time. If a cricket makes a noise outside I leap out of bed like an athlete poised on the starting blocks and awaiting the starter's gun. So keen are my ears, so finely tuned is every sense that I just seem unable to sleep at all. It is now day five and I am beginning to resemble one of the pandas in Animal Kingdom! The bags under my eyes are so immense that they are casting shadows and providing an impressive sunscreen for part of my cheeks. With two white rings under my eyes and a nose that would put Rudolf's to shame I am a sight to behold!
We may have difficulty finding our way around here in America yet we are on first name terms at the local pharmacy so often have we frequented the place! So far Matthew has a nasty heat rash, Sarah has broken out in impetigo and eczema, needing antibiotic cream and steroid cream, Luke, Anna and I have developed a bad case of athlete's foot, necessitating yet another trip for treatment, Rachel and I, for the first time in our lives, have developed cold sores and Ben has, yet again, managed to pull on my belly button ring, causing it to get infected. Oh - and of course a holiday just would not be complete without bringing our extra friends with us...nits!! It's a good job I didn't realize we had stowaways at the airport or we may have been stopped at customs!
Rachel and Sarah trying to eradicate their unwanted guests!
What fun we had yesterday - a full day sat by the poolside with towels wrapped around our hairas we tried to eradicate these infuriating little creatures!
One thing to be said about America is that it is far easier to obtain remedies for such ailments than in the UK. Something else I have bought here and may quite literally have been a life saver is melatonin. Not licensed for use in the UK, it is only available on prescription if a consultant sees fit, yet here it is bought easily over the counter.
Today has been yet another day where we nursed our ailing bodies and tempers ran high. Cartoon Network is a permanent feature in the villa, dirty clothes are strewn everywhere, Ben is happily spinning around and Joe is doing his usual crazy dances...home from home at last!
Today we have been to Magic Kingdom. It was awesome in many ways but yet it served to highlight the boys' differences in a way that I actually found rather depressing. Poor, poor Ben hated every minute of it. The noise, the crowds, the lights...the noise! Despite ear plugs and ear muffs Ben insisted that I stuck my fingers in his ears so he had his hands free to eat bags of crisps or flap his arms or flick his fingers. This has made pushing his buggy and controlling Joe exceptionally difficult yet it is amazing how quickly one adjusts. I am nowan expert at controlling a buggy by using a child's ears as a steering wheel. Maybe I should take up horse riding - I can imagine the concept to be pretty much the same!
Coping with the GF/CF diet has been wonderful here so far. Most drinks have no aspartame in and there are lots of foods in the shops that are suitable for the diet. I haven't dared to venture into a restaurant because the crowds are just too much for Joe and Luke and the expense is rather off-putting. I believe that if most places are pre-warned, they can cater for most special diets though - I wish it was as easy in the UK. I am feeling less like going home each day!
Today I have just added another form of torture to poor little Ben's memory. We went to Epcot and I was assured that the ride that the children were clamouring to go on was a slow moving, pretty and educational ride that even Ben and I would love. As soon as we set off in the carriage, Ben grabbed my hands and pressed my fingers so far into his ears I was worried that I was going to damage them. He then quite literally wound himself around me and screamed hysterically from beginning to end. I will never underestimate just how much noise actually hurts him again. I had presumed that the motion was what upset him, but yet again I have misjudged his sensitivities. Sensory overload is something never to be underestimated. I have to say that I had to find a toilet and have a quick sob to myself. Sometimes things are just so hard for Ben outside his own familiar little world.
So far today my skills as mediator have slowly been pushed aside and replaced by a more vulgar impression of a referee from a boxing ring! Today I have had to physically pull apart each of the children at some point and I am trying to convince myself that the heat is making them more irritable yet I know that not to be true. The truth of the matter is, in such close proximity to each other, day and night, they are finding it hard to adjust to each other's ways. A typical example of misunderstanding has just occurred. A tiny frog has just landed on Sarah's hand. Here it is, isn't it cute?
Sarah is the 'green' member of ourfamily. I can envisage her campaigning to save trees and wildlife and she has an immense love for nature. The boys, on the other hand, do not see such a wide picture
- to them a frog is a frog, whereas to Sarah, it is a creature in need of rescuing and putting back into its rightful environment.
Afterthe initial squeal of delight on seeing this tiny creature, the next thing I saw was a mass of fists and feet and two furious faces, glowering at each other. Risking life and limb I steeled myself for blows as I stepped in between them both, giving Matthew a lecture about how he should be careful of his own strength as he is eighteen and Sarah is a girl and only fifteen. This merely brought about a barrage of "that isn't fair"s and "it was her that started it", followed by a mass of retaliatory insults and defences and all I could do was remove one from the other, send them to opposite ends of the house and position Rachel in a room in between, with strict instructions to keep one away from the other. I then set about trying to sort out the reasoning behind such a serious scuffle. It transpired, after getting a version of the story from all other family members (though Joe's was rather far-fetched!) that Matthew had lumbered outside in his usual clumsy way to have a look at Sarah's beloved frog. Luke had then commented that if Matthew went near it he was likely to kill it (knowing just how clumsy Mat is) and Matthew had replied "yeah of course I will" in a heavily sarcastic tone. Sarah, Luke and Joe, missing sarcasm unless it is clearly spelt out to them, were all horrified at the fact their great big brother was going to go and kill a tiny, innocent frog so Sarah had kicked Matthew hard in a rather delicate place as he came to observe the little creature. In obvious pain Matthew had retaliated, arguing that girl or no girl, she had no right to do such a thing for no reason and deserved a punch for it.
Joe, bless his soul, has managed to dissolve the family friction yet again by doing a few dances and impressions and we managed to go out to Busch Gardens without too much trauma. All's well that ends well I suppose!
I have to give Luke a pat on the back this holiday and say that he is dealing with the effects of the sun on his skin quite admirably. This is something which usually brings about a tirade of screams and cries and moans and groans. I do wonder whether my hints that girls often find a golden tan more attractive than lily white, spotty skin may have something to do with his tolerance levels. As I have said before, one thing we should neverdo is presume anything from our children. Luke hates water and sun and sand but yet here he is coping amazingly. Ordinarily he cannot be separated from his computerfor more than thirty seconds but we have survived almost two weeks without any major withdrawals. Matthew on the other hand is not dealing with it quite so well. He developed a heat rash on the first day and has moaned incessantly from that day forward. In all fairness it did look angry and sore and necessitated yet anothertrip to ourfriendly neighbourhood pharmacy, but I have to say that my patience with him is wearing thin! The girls are lounging around by the pool, Ben is sitting transfixed by Cartoon Network, Joe is practising his moonwalk in front of the mirror, Luke is sitting reading a Terry Pratchett book and Matthew is following me around moaning and repeating himself over and over. Tonight I am going to find some time to myself...please God!
Today we have been to Sea World. Inside the aquarium, fishes and sea creatures swam all around and overhead and I presumed that Ben would be fearful. Don't they always surprise you? As soon as we entered he looked up and began howling with laughter.it seems he was convinced that fish were flying! Oh to look at the world through his eyes! The dolphin show was not quite so successful. The children loved it butthe noise was fartoo much for Ben so I took him and Joe (who couldn't keep still) away to have a run around whilst Matthew, Luke, and the girls stayed and thoroughly enjoyed the show. I have to say that Ben and Joe provided me and the passers by with as much entertainment as the dolphins!
It is very difficult to explain to people that Ben can walk but yet not in a way that is of any use! Having taken him out of his buggy to let him stretch his legs, I have spent the last half an hour chasing after him as he has spun around with his arms outstretched, bunny hopped off in a different direction to the rest of us, chased after children grinning in theirfaces and run up to adults to licktheir legs.
Walking, to him, outdoors at least, is merely a mass of sensory experiences and whilst I often indulge him in such delights and let him have his fun, there comes a point when I merely have to pick him up, dodge the punches and kicks, and carry him to wherever I am needing to go to. One thing I have learned whilst I have been here is that my priorities are vastly different to many other parents'. As long as Ben or Joe are not directly bothering other people or causing damage or harm, they have as much right to enjoy themselves as anyone else and if spinning and jumping and squealing suits them, I am more than happy to leave them to it and if other people have a problem with it...tough!
Well at last the journey home has finally arrived. In some ways I am glad but in others I am not. The whole experience has been good for all of us. Once I accustomed myself to the fact that, America, England or even on the moon (though I doubt I will try that one!), the children will still be the same, we have all enjoyed the warm weather and most of them (though not poor Ben) thoroughly enjoyed the rides and attractions of Disney World. I am desperate to get on the plane now, mainly because one or other of the children at various times throughout the day, has decided to be kind to Ben and tell him that soon he was going to go on a plane to his 'house with a computer'. Though that seems a reasonable thing to do, it has caused a tremendous amount of trauma forBen (which in turn means a tremendous amount of noise for the rest of us!). Ben just doesn't understand the concept of 'soon' or 'another day' and though he is beginning to recognize 'later' it is a word that is to be uttered at the speaker's own peril! Therefore after three hours of hysterical screaming at bedtime when he realized that he wasn't going on a plane, he then spent anotherthree hours in a fitful sleep whereby he awoke and screamed periodically on realizing that he still wasn't on a plane.no sleep for me again!
After a long and weary night, most of which I spent packing, washing and cleaning, we went out to the same buffet style diner that we went to on the first day of the holiday. As soon as we entered however, we encountered another problem. Ben scuttled straight through the door, past everyone and to the very same place we were seated at for a meal two weeks ago-not a problem ordinarily except that people were already sitting there! Ben stopped in his tracks, looked confused and then opted for his usual reaction when confused or overloaded, which is to spin around in circles and flap his arms. Ignoring the embarrassed glances from the rest of the restaurant I attempted to lead Ben backoverto his brothers and sisters only to have him do his impression of an eel and slither from my arms to the floor (how do they manage to seemingly dislocate their shoulders when one attempts to lift them?). On reaching the floor, he did a swift bunny hop underneath the nearest table and no amount of coaxing would make him come out. After scurrying from table to table, issuing instructions to each of the children, climbing out from under the table with Ben in order to run after Joe as he leapt about wildly, trying (in vain) to prevent Anna from devouring enough sweet stuff to make herself sick, and listening to Luke's running commentary about differences in time zones, I am wondering if maybe not having to make breakfast as my own final treat didn't quite pay off!
Well after much bickering, several more grey hairs and a few more bruises, we are now finally on the plane home. Five hours into the plane flight and I have managed to successfully get both Joe and Ben to sleep. Having had Ben punch, kick and bite me, scream hysterically, strip his clothes off numerous times and smear poo all over me, I can hardly say it has been easy, but I am patting myself on the back at having done so. Luke however is a different matter! Luke doesn't smear poo, scream hysterically, strip his clothes off or even make too much noise. He is in fact, to any casual observer, the epitome of perfection. Well mannered to the extreme, intelligent, charming and...sorry Luke...downright annoying! After a four-hour onslaught from Joe and Ben, there is nothing I feel less like doing than answering "How long have we got left?" every three minutes or listening sympathetically (who am I kidding?) as he moans and groans about how uncomfortable he is or how his head/leg/back hurts. AS and long journeys seem to be a bad combination and though I sound hard on him, I am in desperate need of a sit down and my patience is wearing thin.it seems that the air hostesses feel the same! Aftertwo hours of Luke wandering around, lining up all the covers on the head rests, moaning about the feel of the seats and asking where he could move to, they finally decided enough was enough and gave him the royal treatment by arming him with as many pillows and blankets as possible and moving him to first class.clever lad!
I am tired and hungry because when the meal arrived I had only managed to feed Ben and prevent Joe from spilling his everywhere whilst also managing to give a cheery answer to the barrage of questions from Luke about the content of the meal. By the time the stewardess realized that I had not actually had a meal myself, the lights had been turned off and I didn't relish the idea of being the only person on the plane to be eating, and in the dark too, so decided that hunger was better than hassle and declined.
As I sit here typing and thank the Lord for the fact that Luke is talking to someone else and Joe and Ben are, for now, sleeping next to me, I have just seen something which has made me groan inwardly. ..an all too familiardarkshadow, moving stealthily across his short blond hair.it seems after eighty dollars' worth of lice treatment and nine hours of constant delousing, one of the pesky little creatures managed to survive and stow away in orderto travel another three thousand miles back to England with us.some things never change!
Was this article helpful?
Autism is a developmental disorder that manifests itself in early childhood and affects the functioning of the brain, primarily in the areas of social interaction and communication. Children with autism look like other children but do not play or behave like other children. They must struggle daily to cope and connect with the world around them.