Around the World with Sebastian: Travelling with a Child with Cerebral Palsy
Sebastian's first flight was a short jaunt from London to Zurich. From the beginning he was an easy flier.
We wanted to try it out before flying to Cairo but nothing could prepare us for all the doctors on board being summoned to our seats to see if we needed help for Sebastian who sounded like he was having trouble breathing due to his strider and strained cry.
All of this before asking if we needed assistance!
After that first long haul flight there were many more, some on my own.
A mom on her own traveling with an infant always gets plenty of positive attention as the flight attendants were nearby to help as needed.
Of course I was protective and rarely let someone hold him since he needed a bit more support than your typical baby.
Nursing helped stopped a lot of tears and unwanted doctors showing up at our seats during later flights too.
As a baby we used a carrier to travel with Sebastian and thankfully we lived in Cairo for his first two years where a car seat was not required in taxis and when we travelled elsewhere it was by train or plane.
Sebastian's reflux caused him extreme unhappiness whenever in a car seat since his head control wasn't strong enough to sit up straight.
This meant he wasn't ready for a stroller for some time either which made travelling easier, one less piece of equipment to fold and lug aroud.
Though once he was eating solids he needed to be upright and a stroller was used as a stand-in for a high chair since he couldn't sit up in the simple restaurant highchairs.
We did lose a wheel on his stroller on a flight from Cairo to Dubai once and had to spend a day shopping for a new stroller which was only partially reimbursed.
But one can only argue with Egyptian Air officials for so long.
Fast forward to school age when Sebastian is outgrowing his carrier, stroller, and high chair but still needs support for all daily activities.
Sebastian got his Red Racer just before his 3rd birthday. When we chose the Zippie Iris with tilt we chose a model that would break down (into pieces for easy travel) as well as withstand a rougher terrain.
We wanted to be able to take it hiking as well as into a car and onto a plane.
Our first trip by plane with the Red Racer (that's what we call Sebastian's wheelchair) was from Toronto to London, non-stop. I write extensively about our trip here, but will aim to summarize with a few basic tips below.
Travelling with a wheelchair:
1. Break it down as small as possible. Put all of the removable parts into one or two large Ikea shopping bags. This will include footplates, head rest, seat back and bottom. I later learned we could have also removed our wheels, but I don't think it's necessary. Take the Ikea bag on board and the flight attendant will store it for you.
2. Fold anything down which doesn't detach, for us it was the back and handle bars.
3. Lock moveable pieces in place. I used plastic locking strips to hold the back bars from moving from the base of the chair. This did prove to be an issue on landing when the flight attendants had to find something to cut them off due to restrictions for such items like scissors on board.
4. Attach a laminated photo on card stock of your child in the wheelchair with a very short hello message.
This humanizes the chair and reminds those moving it that it is an important piece of equipment which allows the user independence and the ability to do simple activities for daily living.
Two men who transported Sebastian's chair below the plane thanked me for attaching the note.
5. The chair base will be waiting for you just as a stroller would as soon as you disembark. We chose to be the last off so we had space to put the chair back together as well as remove the car seat from the plane.
6. Car seat: if your child cannot sit up independently as Sebastian cannot, a car seat is a must for the plane.
It must be airline approved and will have a sticker somewhere on it that says so. Airlines do not approve any other seating.
Depending on the airline and the size of the seats it can be very tricky to get in but not impossible!
I recommend bringing a very simple/compact car seat style. Obviously the weight and size of your child will also come into play.
Sebastian still fits in a forward facing car seat.
Many of them hold up to 65/70lbs. Sebastian is nowhere near that. Even at almost 6 years old.
7. Accessories: Bring a small, foldable stroller if your child fits in one for places you may have issues with accessibility.
(We were also travelling with a baby so we could take it on board for her free of charge. Otherwise you check it with your luggage.) This was necessary for us when travelling in London.
When Sebastian was in his wheelchair we needed to take buses everywhere. This added a lot of time to our trips.
For tube and even train travel, we found it easier to bring his stroller, though next time that won't be an option because he's grown out of it.
We also have a new hiking carrier ready to try out for really off-road travel. We also bring noise cancelling earphones for underground travel and airplane take off.
Travelling with medicine by plane:
Sebastian also has epilepsy so we need to travel with his regular medication as well as emergency medication should he have a seizure lasting more than 5 minutes.
If you are travelling with any kind of medication, make sure you get a form from the airline for your doctor to fill out which states the needs of your child, including physical, nutritional, and medical.
This will make any accommodation requests possible. It is also wise to have your child's specialty doctor, such as a neurologist, to draft and sign a letter in regards to travelling with medication, listing each in the letter.
With a major air travel experience under our belt we decided next to go on a road trip into Quebec from Toronto.
This time we also had the added task of making sure there were accommodations for Sebastian's G-tube along the way as well as fully/partially accessible places to stay, eat, and tour.
We hired a mini-van for the drive and found using the wheelchair was very accessible throughout Quebec.
Though we still used to stroller for hotter, city explorations, the metro in Montreal and around the walled area of Quebec City. When you have wheels, you are always looking for ramps and disappointed to see stairs.
Traveling with a G-tube
1. Contact accommodation to find out if there is a small fridge in the room or if we can have access to the main fridge (such as when staying in a bed and breakfast or guest house versus a hotel).
We also chose to stay in short-term apartment accommodation (Airbnb rentals) and wanted to be able to make dinner or get take out and eat where we were staying.
This made a huge difference in ease of making sure we could prepare Sebastian’s food and formula for eating and for his tube feedings as well as have the ability to clean everything with ease.
2. Have a day pack with everything needed for a meal/tube feed on the go. Including a small jar of dish soap for rinsing feeding bags.
We have cleaned Sebastian’s bag in many restaurants while on the road.
And we’ve also tossed a few without reusing them because it was just easier or more sanitary.
We also have a travel bag with cold packs in it and a thermos for keeping food warm. I purchased a small, plastic, portable food masher to enable us to mash up food when out to eat so he can eat from the menu as well. He had a lot of spaghetti!
3.We haven’t experienced travel by plane with the tube yet so I can’t say but I definitely plan to notify the airline to find out what they allow in regards to liquids, batteries in his pump, etc.
I will get the doctor’s note to cover everything he needs. Just to be safe.
My husband and I are world travellers.
We met on a remote island off Malaysia. We have travelled in many countries and lived in half as many.
We have a strong desire to travel and expose our children to the world and a variety of diverse cultures, places, and experiences. Living abroad is no longer realistic due to Sebastian's current educational, physical and health needs.
Travelling abroad is complicated. But it is not impossible. We want our son to be a part of the world around him. He can only do that if we take him. And take him, we will.
Next stop: Belfast.