The Autism File

Fear Of Flying
Diane Parker
Kalen’s Mother

In the matter of Me vs. Flying, the jury is still out. I used to fly a lot, and was used to the uncomfortable and claustrophobic conditions, the queues for the loo, those mid-flight instructions to do up your seatbelts with ‘no cause for concern’ whilst you are thrown about in the seat, the interesting and varied meals (joke), and those (sigh) pilots. Things are now rather different; I haven’t the inclination to appreciate uniforms, and I have produced three children, for whom I am afraid, all the time, everywhere, and I now have to face my phobia.

I am about to travel across the Atlantic and at present I cannot cope with the fear. I can’t take tablets for the air sickness or alcohol to calm me, because (stop press) I am now 5 months pregnant (it’s a girl, due March 2000). This is why we’re going now, and not next year as originally planned, to avoid the horrors of half-hourly feeding/screaming/
changing. It’s going to be tough enough with my current Zoo posse, without a smaller noisy addition as well! I must try to keep it together for the tortuous nine hour flight, and try various ways to amuse the kids, including Kalen (how, how?). My poor husband is suffering from the financial strain of bringing this holiday so far forward and I will be green and shaking with terror for the entire flight. Sounds like fun, doesn’t it? It’s only (only?) seven hours coming back – I may be less hysterical by then … or not. We’re not going for any therapy/treatment for Kalen – this is a family holiday only. Kalen will enjoy himself utterly, and pure happiness is a kind of therapy, too. Kalen has so far had three secretin injections, and has shown only distress as a consequence, so although we will continue with them at some point soon, we are taking a break from it all for now. It’s Five Go Mad In Florida, or should that be Five and a Bit?

So I am to brave the skies, and no, I am not informing the airline prior to going that Kalen is autistic, I don’t want him to be refused on the mistaken assumption that he may be a danger to everyone else. I am more of a danger than he is! As a standby, I have Phenergan, and I may administer it, to help him sleep … I just hope that Kalen doesn’t eat the seats – no, really. We went to Spain earlier this year (we drove, before you ask), and when Kalen ran out of baby wipes, plants and T-shirts to chew, he started on the foam cushion seats of the furniture, followed by the sun loungers around the pool. We rented a fenced and gated villa, and he was bored and unable to escape (although at one point he did make it to the roof but thought better of it). Also, we didn’t take any videos so he couldn’t ferment in front of the TV as he usually does. He raided every fridge, freezer, and cupboard in the place, and his brother Jared was forever calling out ‘Mummy, Kalen’s eating the cushions/cheese spread/all the butter/the tomato sauce/Talia’s swim bands/the washing up liquid again’.

We are fortunate that Kalen enjoys travelling, new places and activities, but food – AARGH. He eats loads, all the foods he shouldn’t along with fast food, and toys and inanimate/
inedible objects. Me to Kalen: ‘don’t eat the stickle bricks/teddy’s leg, dear’. He also raids bathrooms, bedrooms and kitchens for liquids/creams to pour on carpets etc, so we have padlocks and clasps on every door and cupboard. When Kalen realises defeat, he will either try to escape or get into/bounce on beds. Then he will fetch his PECS symbols and shove the sign for ‘finished’ under our noses meaning ‘hurry up and let’s go somewhere else’! What will I do if he proposes this at 30,000 feet?

You’ll notice that we have temporarily given up trying to be a gluten and casein free household. We are going to try it again, but I personally find that, when we’re away from home – particularly abroad – a McDonalds can save my sanity. I know this will send some of you into a frenzy, and there will be frothing and cursing, but please, your Honour, there are mitigating circumstances. On the way to Spain, there were horrendous traffic jams and we were stuck on the motorway in France for years. I had sandwiches from home, but believe me, they do not last two days in a car. What they resembled halfway into the journey does not bear printing on this page. The children were grizzly, hungry and whining but, what’s this, salvation, that golden ‘M’ in the distance – panacea. How wonderful to step into the cool, familiar interior, let the children loose in the play area, and, oh happy day for a diabetic, be able to buy salad. (Why don’t the UK franchises sell salad?) Try buying gluten and dairy-free foods in France or Spain – not easy! NB – must ask Mr Lewis from Lifestyles about that! Even though I knew that I wasn’t doing them any good, at least the children’s tummies were full, which made for much happier travelling. When we arrived at our villa at 2 in the morning, the mountain 50 metres behind it was on fire and we had no electricity (cables melted) and no running water (used to put out the fire) for two days, so the big ‘M’ came in handy again. I think the appropriate phrase here is, ‘No Choice’. If they did the special diet bit, we would be the happiest family on the planet. Anybody know a VIP-type person who works for M? (or BK or KFC, we don’t mind!).

I treat all my children the same, as ‘normal’ whatever that is, and they live in the modern world, amongst their peers. Before I had any knowledge of food allergies or potential conditions induced by food, my poor children were exposed to, and of course now crave, chicken nuggets, fries, crisps, cheese spread, white bread and (especially) chocolate biscuits, maltesers or smarties. They would sooner starve than eat muesli, and getting vegetables into them is impossible. The occasional apple, yes, but nothing else. I’ve considered intravenous night feeding, but discarded the idea. I need funky children orientated foods, that I won’t feel guilty or irresponsible feeding them, whilst at the same time appeasing their desire for all things bad, unsuitable and just plain poisonous. Then I can stop beating myself up about it.
Now it seems that winter is upon us, and along with the joyous cold and crisp days come the dark and dismal days when we all wish for warmth and comfort. There isn’t much comfort for parents of autistic children, is there, especially if you're just getting used to the idea, because I think you look at your child(ren) in a slightly different way – almost overnight new terrors have to be faced because although there were behaviour and speech problems, and comparisons with other children posed questions for you, you had vague hopes. Then those jolly professionals say ‘autistic’ and everything just goes to pieces – fears now take the place of hopes. Who will look after them when I’ve gone? Will they suffer abuse?

What about money, how can I expect a cure when I have been told categorically that there isn’t one? The acute and debilitating pain – three years after Kalen’s diagnosis – hasn’t gone away. Kalen used to talk, count, play – I have this on video but I can’t watch it because I fall apart when I do. But listen to me, we now have each other! I don’t want to go around hugging trees and communing with the fairies or anything (although I’ll consider it if there’s a chance it would help), but now we can share our pain and fears, and we may be able to make a difference for our children. I don’t know them personally, but the Tommeys appear to have an unselfish mission, not just for the pursuit of treatment for their child, but for others too. The Autism File enables us to share information amongst each other to help us all help our children. I have learned a lot from the last magazine, and incidentally have spoken with Mr Lewis of Lifestyles who, thank you, has risen to the challenge and is striving to provide edible, interesting allowed foods that our kids want to eat. I am keen to try them properly on my return from the USA. Let’s all look forward to the year 2000, and the good news for us parents that it will surely bring. Our children will get better. I wish you all a happy, secure, peaceful and fearless New Year.



In issue 2
Winter 1999 …
Jonathan Tommey reports
Our Diagnostic Testing for Billy
Fear of Flying
From Despair to Detox
Psionic Medicine
Testing, Testing,
1 - 2 - 3
Report from the 5th Annual Defeat Autism Now Conference
An Injection of Hope?
Diet and Nutrition
Gluten and Casein Free Recipes

Conference Report
Autism: An Allergic Disease?

Food for Thought
Autism File Letters
Secretin Test Results
The Son-Rise Program
Organisations and Contacts
Readers Page