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Travelling with a Disabled Child

By Kerry Kenihan

Egypt's Great Pyramid of GizaHe was six months old and prone in a second-hand English perambulator. We stood in front of Egypt's Great Pyramid of Giza. The pram's top was detachable. Several ribs had broken before we left Australia.

"You'll probably never live to be able to climb it yourself," my husband said to our severely physically disabled son. "But I'll take you as far as I can."

With that, his father summoned two eager bearers and, with them, carried the vulnerable infant many steps up the pyramid's side. His Dad carefully lifted him from the perambulator's top and pointed out the distanced Sphinx.

The baby, now 30, a movie and documentary producer, director, presenter and occasional actor, recalls nothing of the adventure. He is Quentin, called "probably the most fragile boy in the world" by Australian television legend Michael Willesee in Mike's award-winning 1983 documentary entitled Quentin.

He has a rare genetic disorder, osteogenesis imperfecta which renders his bones as fragile as eggshells. He breaks bones on sneezing, turning in bed and when he drives his wheelchair too quickly and crashes into light poles as a speedster, resulting in a fractured skull on a couple of occasions. His knee was broken after he was knocked by a car driver who didn't see the little, dwarfed fellow in his wheelchair crossing a road. The wheelchair collapsed but not before the boy had continued somehow to report the incident to police and taken himself to Adelaide's major hospital's casualty ward.

Quentin's childhood travels (on ships, planes, trains, in vehicles and caravanning and camping) may give example that disabled kids with problems from physical to intellectual can enjoy holidays with their parents - and parents can also have fun too. That's if they have a courageous attitude and commit extra time to planning leisure from home.

Attitude is number one. As an author and travel writer, I'd been invited to Greece on an important assignment and to continue by ship to Alexandria and by bus to Cairo. How could I go? I was the child's major carer as the baby took two hours to drink two ounces of milk. Although my husband was of great support, he was uncertain about total, sole responsibility. We came to our first major decision.

We would not wrap this child in cotton wool. We would go together with the baby. Attitude also meant that we would tolerate the stares, the disapproval that we should take a deformed infant into an international arena. We were castigated. What if something happened to him and we could not gain medical assistance abroad?

Our knowledge of his handicap was intense. I had learned further how to treat and splint him should he fracture. We had gained advice from our family doctor. Then came the nitty-gritty.
Quentin Kenihan
We contacted an airline, explained the situation, sought bulkhead seats and permission to bring the baby in a basket or perambulator top into the plane to be set on the floor with extra safety belts. I emphasised he could not be a babe in arms on takeoff and landing. The airline staff was cooperative, perambulator was bought (for its smooth ride) and lined with foam rubber to protect Quentin during any flight turbulence.

And, lo, this scrap of a kid became an international traveller. Friends cared for our slightly older son, Myles.

Tips for parents of disabled children may need to be repeated. Do not be ashamed. Take courage that, as parents, you and your child may benefit from a holiday. Do not avoid confrontation which you may face from ignorant people who do not understand. Do not be upset if people avoid eye or verbal contact with you if your child is obviously disabled. Be ready to inform them. When travelling with Quentin, people either turned away in dismay or asked me what was wrong. Some were also critical that I should bring him into public eye. Quentin was not a pretty baby. Whatever the reaction, I was prepared.

You may say: "This is my son, Jason. He is disabled. He suffers from ... whatever." And give a short explanation if you want. Do not hide nor feel guilty. Be proud you are introducing your child to the world. This will add to most people's understanding of children who are not normal, healthy kids. Do not closet him nor her into a cupboard.

This may be difficult if you are still coming to terms and coping with your child's disability which may deprive you of sleep and tolerance, will probably test your marriage or relationship, lose you fair-weather friends and, believe me, money. Parents do not gain much financial support for caring for disabled children, particularly if expensive treatment and equipment are necessary.

A holiday will help if it's affordable.

Even if it's not far from home, discover a local caravan or camping ground and ascertain if toilet, bathroom and cooking facilities are adequate and, if your child is wheelchair-bound, whether he/she can be accessed to parkland, swimming pool or walking trails. South Australia's Belair National Park was one destination for us - and it's only 3 km from where I live. The change of environment, spotting koalas, kangaroos, wallabies and native birds and enjoying outdoor barbecues by lakeside with ducks, was exhilarating for my three children, including the boy who could not walk.

Involving other healthy siblings in destination choices is also important so they do not feel left out and that a break away is not simply for the disabled child.

"What, Ma? " had echoed Q's elder brother and younger sister. "We can go there anytime for a picnic and to feed the ducks."

"Yes... but," I began. "What about waking up in the bush with the birds, smelling the wildflowers, watching the wildlife, meeting other families, playing with other kids...? "

"Yee-ay!" they chorused. And away we went for only three but very special nights in an on-site van. Previously, we had dragged our own caravan through half of Australia.

Next step. If travelling by train or bus, find out if they are wheelchair accessible if necessary. Should your child suffer from motion sickness, request seats by a door or in the smoothest part of the vehicle. Take sick bags with you in case not enough are provided. Also take any special foods which may not be available en route. On booking a long distance train or plane journey, be specific about what dietary needs should be met.

Never forget to carry medications in hand luggage. I am a specialist international tour leader of elderly groups. I am often astonished that, despite prior warnings, so many of my people pack their medicines in suitcases, believing that lost luggage doesn't exist. Oh, it does and several have been the occasions when, after turning an airport upside down to search unsuccessfully, I've had to call foreign doctors to hotels to write prescriptions and trail unknown streets to find a pharmacy to issue them.

Make sure you have more than enough medication for your child should the holiday be extended for unforeseen reasons - an airline strike, a train disaster, a broken-down bus or your own car as disabled as your child. If your child is medicinally dependant on drugs, carry extra prescriptions in case you are delayed.

Seek help without shame. Quentin was only five when I flew him to California for seven months of surgery and rehabilitation. We'd just left Honolulu when he had a nose bleed, totally unrelated to his condition. I had tissues but asked for more. The bleed became a torrent. I asked a flight attendant if an announcement could be made for any doctor's assistance on board. An Australian pediatrician responded. Another announcement was made. Drinks would continue to be served but without ice.

The whole of the aircraft's ice supply was used to freeze Quentin's face during five hours of fear he would bleed to death. An ambulance awaited us on the Los Angles tarmac but, fortunately, we did not need it. Ice, crew concern and the advice of a stranger had saved my little boy's life.

Now, Quentin travels the world, alone in his movie-making purpose but he always needs a carer as, while his intellect is superior, he will never be totally physically independent. Through travel as a baby and young child with his parents and siblings, he learned that earth was beyond the confines of a wheelchair. He has confronted politicians on behalf of disabled children - and won at aged 11 - and interviewed royalty, later.

Thinking to fly your child alone to a loving relative? Be aware that because of possible litigation, all airlines insist that a carer, not necessarily a parent, must take the child on board and place him/her in a seat. Someone must also board the plane at its destination to remove the child from that seat. Explain this when booking so that in these anxious days of terrorism, permission is gained for a non-traveller to enter the aircraft. Also ask about requirements for a battery-powered wheelchair to be transported in cargo even if you, a parent, are flying with your child. The battery may need to be removed before takeoff and a new one ready for use at the other end.

If you travel frequently, tend to use one airline. Staff become accustomed to you and your child's requirements. "I'm Quentin Kenihan's mother," I've said. " You know the drill. Please look up his needs." This saves time on both sides.

I have friends with intellectually disabled children, ranging from autism, celebral palsy to brain-damaged babies from birth. Children with Downs' Syndrome are generally of gentle and loving nature and can be taken anywhere.

Arranging holidays can be more difficult if behavioural problems or incontinence are present. But the same situations can apply as with physically disabled children. Let transporters and accommodation providers become aware that your child has special needs yet that you will be ultimately responsible. Ask if a cot is available to save you taking your own. But pack a liner and extra sheets if your child is likely to wet the bed. Take out travel insurance for every contingency, first being medical for not just your disabled child but you, too, in case you become ill on holiday.

Does this all seem too hard? Never-never in my case with my three wonderful kids whom I've taken from van parks to cruise ships. Able-bodied people can be surprisingly selfish - like crowding ahead when you have to use a lift to take a pram, pusher or wheelchair to another level - or surprisingly helpful. I'll never forget one American tourist also wanting to explore the Cairo museum in which Tutunkamen's effigy was displayed. There were no elevators and my husband and I struggled to lift the perambulator up many flights of stairs.

"Hey, you guys," the American yelled. "Ainít any of you gonna help these two Aussies with their little baby? C'mon."

Strangers surged to assist.

Involve all your children as much as possible in your holiday. On an Italian cruise ship, the forwarned crew realised four-year-old Quentin had great intelligence. "Attentione prego," he'd announce through the public address system. "Dinner (breakfast, lunch) is about to be served. Please be punctual."The child, from whom passengers turned away initially and his attractive brother and sister, were suddenly popular. Most ports needed access via lifeboats (tenders.) Many were the hands ready to assist us. Oh, if your child is in a wheelchair, take also a collapsible pusher.

My last tip is to sever the umbilical cord periodically. Ask a relative or paid carer to babysit after full explanation of the child's condition and needs. Take a romantic break by yourselves or alone or with friends if you're a sole parent. Leave contact details but don't phone home. You'll soon be made aware if anything is wrong.

*Kerry Kenihan's books How To Be the Parents of a Handicapped Child - and Survive and Quentin (a biography,) both published by Penguin, but out of print, can be borrowed from or through libraries.

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