Travelling with a special needs child

Some practical tips from one mom who has travelled around South Africa with her wheelchair-bound son
By Deirdré Amy Gower

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In June 2013, after taking my wheelchair-bound son, Damian (15), out of school for scheduled surgery and resigning from my job to be able to care for him during the four- to six-month recovery period, we found ourselves at a loose end when the surgery was unexpectedly cancelled. I decided on a three-week road trip to visit family while determining the way forward. Fourteen months later, that road trip has taken us on an extraordinary journey – discovering new places, forging friendships and finding a gentler way to live. We left Cape Town with some surprises in store for us, and I have packed – and unpacked – our car more times than I can count.
 
The first leg of our trip included stops in Swellendam, the Garden Route, Port Elizabeth and then on to East London to our family. From there we travelled to the KwaZulu-Natal Midlands, exploring the area as well as further afield to Durban – visiting a number of attractions and overcoming accessibility challenges when they arose. With time to spare en route back to Cape Town, our real adventures began. We stopped in Plettenberg Bay for two weeks as part of a farm volunteer programme – and ended up staying five months. Exchanging my office stilettos for gumboots, and with Damian by my side, we spent our days looking after and riding horses – a far cry from rushed city life. Returning to Cape Town to pick up where we left off, after a brief holiday with several more adventures in our own city ranging from a boat trip to Seal Island and a horseback safari, we found ourselves on another volunteer farm. Once again, one month became five.
 
We have learnt to adapt to diverse environments, to streamline our travel preparations and appreciate every moment – good or bad – as part of the journey. After all, a good journey is not just a physical trip, it is an exploration of self, broadening of horizons and building of resilience – and if we can share these things with our children, how fortunate we are.
 
Packing the car
 
I have mastered the art of getting the maximum number of items into the minimum amount of space. Make sure wheelchairs are easily accessible – the first inclination is to pack bulkier items first. Whether stopping at attractions along the way, or doing a trip in one go, the wheelchair will be the first item needed at your destination. Pack clothing into smaller bags that can be used to fill spaces rather than one big bag that takes up space.
 
Seating
 
“The child should be well positioned and should be moved or stretched at least every two hours,” says occupational therapist Megan Giljam. “Positioning in the car is really important to prevent developing any deformities, inhibiting any patterns of movement like extension and ensuring adequate comfort and pressure relief. It is also quite important for the child to be able to see out the window and experience the excitement of a road trip.”
 
Accommodation challenges
 
Staying in different establishments, each with their own set of accessibility challenges, is a lesson in flexibility. Access to buildings is the first obstacle. Even if there are ramped entrances, the terrain leading to the place may be unpaved, making manoeuvring a wheelchair an exercise in strength and patience. The next hurdle is the bathroom. Some accommodation venues only have showers, which makes washing a differently-abled child difficult.
 
Refreshments and bathroom stops
 
“Special needs children need nutrient-dense food,” says Cape Town nutritional therapist Heidi du Preez. “The journey alone might be stressful enough for them to cope with and should not be filled with sugar-laden junk food. Plan ahead and pack healthy snacks.” I find Damian loses his appetite while travelling long distances, so keeping him hydrated is vital, though he will occasionally snack on yoghurt, bananas or biltong – all of which are easy to pack and eat. Bathroom stops are tricky ordeals, so easy access to a wheelchair is essential.
 
Entertainment
 
Music is always a winning choice for us, whether relaxing melodies or fun songs. When music isn’t doing the trick, “spot all the white cars” is an excellent concentration game. Sometimes, after 10 minutes of silence and the game forgotten (at least for me), Damian will pipe up with an insistent “There!” indicating the approaching white car with his eyes. Special needs teacher, Joanne Heinen, from Alta du Toit School in Cape Town, often travels with her students and finds that the higher functioning children love to amuse themselves with iPads, while the lower functioning children benefit from games such as I-spy and count the lampposts or simply paging through books and cuddling a fluffy toy.
 
Activities and adventures
 
  • Animal parks and aquariums are popular choices, and many cater for wheelchair users.
  • River rafting is a fun option and a child can be seated snugly in the nose of a rubber croc, with a life jacket, while Mom and/or Dad paddle.
  • With a selection of bicycle trailers now on the market, special needs children can be included on cycling outings.
  • Horse riding is therapeutic as well as enjoyable. Many riding schools have suitable ponies on which special needs children can be led with assistance.
 
Tips for flying
 
Zelda Mycroft, CEO of the Chaeli Campaign and mom to inspirational International Children’s Peace Prize winner 2011, Chaeli Mycroft, shares tips from their travel experiences.
 
booking your flight
 
  • When booking wheelchair assistance, some domestic carriers will give you a pile of additional medical forms to complete.
  • Book middle and aisle seats, which are easier for access to the toilet and the passenger assist unit (PAU). Online bookings often don’t have the wheelchair/disability information related to booking readily available.
  • When booking an international flight, it’s essential to mention that you will need assistance. Make sure when you book that there is a slipper seat available on board for in-flight use (to take larger children to the toilet).
 
checking in and boarding
 
  • Ask questions – do not assume people know what to do.
  • Request a seat that works best for you.
  • Ensure PAU is booked.
  • Ensure that the slipper seat is available for transit onto the plane.
  • Flight attendants are generally friendly and especially helpful.
 
additional tips
 
  • Prepare for any eventuality – pack a spare emergency bag with clothes, anti-diarrhoea meds and other essentials.
  • Be patient and prepared to be last off. Don’t be in a hurry to go anywhere if you need assistance getting off the plane.
  • Wet wipes are essential, along with a well-cultivated sense of humour.
  • Introduce yourself to the person you are sitting next to – you might need their help at some stage.

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