So, I’m not long back from the (almost) annual Walker pilgrimage to the Greek island of Kalymnos, and I’m reminiscing/reviewing the pros and cons of travelling with my special little CFC angel, Carys. As you undoubtedly know by now, she has a very rare syndrome, which means at nearly 8 years old, she cannot walk, talk or communicate. She is also affected by a myriad medical conditions, including Hypertrophic Cardiomyopathy (her deadly stalker, a serious heart condition), and Epilepsy, for example.
It would be easier to stay at home. that’s a fact! But Conor and I determined right from the start that we would include Carys in as many family activities as humanly possible, and that her arrival would not mean that in the future, our boys might resent her for holding them back from participating in life’s more exciting adventures.
Conor and I were married on one of Kalymnos’s beaches. I have family there. An unspoken, impromptu, informal family reunion seems to magically take shape there every couple of years. Although this summer, we intended to try somewhere new, after all our research, we were inevitably drawn back. It has become so familiar, it almost feels like home.
But it’s not an easy journey. We leave the house at 4am for the 11/2 hr drive to Dublin Airport. From there we fly to UK; there are no direct flights from Ireland. After a 3-5 hour interval hanging around the airport, we catch our 4hr flight to Kos. From there, it’s a short taxi ride to the harbour at Mastichari, where our first Greek meal is normally eaten in the restaurant Kallicardia, whilst we await the last ferry which will take us to our final destination. A 15 minute taxi journey usually delivers us to our hotel, by which time it is midnight, Greek time.
Yes, we’re all exhausted, but when we awake the following morning to a deep blue sky, consistent dawn-to-dusk sunshine, 30*C heat, crystal clear seas, turquoise swimming pools, gorgeous Greek food and happy, friendly Greek hospitality, it’s all sooooooooooo worth it!
For you, you might say, but what of Carys? She has no comprehension of what has happened or why. Surely it’s cruel and selfish taking her so far out of her comfort zone, removing her from everything with which she is familiar, purely in the pursuit of our own happiness and fulfilment.
Not so. If anything, Carys loves the experience just as much as the rest of us. She gets so much joy from her holiday, that this has become the major driving force behind us going through such a journey to get her there. In fact, I would go as far as to say she must have been a little Greek girl in a previous life, she seems so settled and content when she is there!
The secret to success when travelling with your special needs child, is to be very well prepared. These are my five top tips, which really helped to make our trip easy, relaxed and (almost!) stress free.
1. The Syndrome/Medical Condition
We always take a letter with us written by Carys’s doctor, describing her conditions and medications, translated into Greek. In actual fact, in our experience, the doctors and pharmacists seem to be mostly trained in the UK or USA, and speak English well, so language has never been a barrier to receiving the medical care Carys needed.
One year, I was horrified to find I had miscalculated the amount of medication Carys needed for her Epilepsy, and we didn’t have enough to last through the holiday. Whilst I languished in our hotel room, full of anguish, berating myself for my mistake, Conor took a taxi down to the pharmacy, where the pharmacist spoke perfect English, understood our predicament, and promptly issued a prescription. It was not her usual drug, but it did the trick.
It is always advisable to ensure you have adequate medical insurance for your trip. Get your other half to double check all the medications you are taking with you. Now, I always measure each dose into a day by day pill tray to take with us, and that way I know it is correct. Always carry your medications with you in your hand luggage.
3. Food and Drink.
Carys takes all her food and drink orally. However, she can’t chew efficiently, and chokes easily, so all her food must be mashed or pureed. The only way she can take her meds is by mixing it with her food. She must never get dehydrated; this could be detrimental to her heart condition.
Most supermarkets abroad sell some prepared baby foods in jars, but there may not be much choice. In Greece, the diet mostly consists of grilled meat and seafood, salads, bread, yogurts and cheeses. Carys loves Greek yogurt and honey; I also discovered that she loves tsatsiki, feta cheese, meatballs, stuffed tomatoes/peppers/aubergines, dolmades, cheese and spinach pancakes (she ate ALL of mine, I had to order another!), ham and cheese omelettes, vanilla milk shakes, freshly squeezed orange juice, chocolate pancake, baked lamb, moussaka, and small morsels of fresh bread. There was just no stopping her! Provided I cut it up small enough, she managed to eat it! We usually fed her before we went out, as eating out in Greece tends to be a leisurely affair, and Carys has no patience once she feels the pangs of hunger, and then offered her food from our plates. She didn’t refuse anything!
As for drinking, she managed a litre to a litre and a half every day…that’s more than I can drink, unless we’re talking watermelon Bacardi Breezers, that is!
I know some kids are fed special foods through feeding tubes; I’m afraid I have no experience of this, although I understand from other mums that it is possible to arrange to have these foods delivered direct to your destination prior to your arrival. My advice would be to always speak to your hotel so they are expecting the delivery, and can arrange storage, fridge space if required, etc, and then check to ensure it arrived.
This was previously always an issue for us. Where would Carys sleep? She is too big for a cot, but has no sense of her personal safety, or her body in relation to space and everything around her (part of her sensitivity issues, I believe). As a result, she can’t sleep in a bed, she just falls out. I hated putting her on the floor, not only for hygiene reasons, but for bugs and creepy crawlies, draughtiness, and comfort; it was also impossible to keep her in one place. Then, a couple of months ago, I bought her a safety bed tent from www.myreadysetbloom.com. It was the perfect solution! For the first time on our travels, Carys was able to sleep in a proper bed, safely, and with the added bonus of keeping out any pesky mozzies or flies! She loves sleeping in it too, and it saves our aging backs, as she can crawl into it by herself, with a little help, no more lifting for mum and dad, hooray!
5. The Journey
This is the part most parents dread most. I mean, it’s hard enough travelling with ‘normal’ children, isn’t it, never mind one with special needs! Our journey in particular is very long, very tiring, and very trying, for all of us! As we fly Ryanair, we carry all our luggage on with us. This has advantages and disadvantages. On the plus side, I have ready access to all Carys’s toys to keep her entertained, and clothes and nappies for changing, if required. But it is quite literally a drag having 5 small cases to tow around with us all day long.
This year, for the first time, we booked airport assistance, and it made such a difference. They will offer as much, or as little help as you decide you need. We had help through check in, were able to go to the front of the queue (although the process of getting us on the plane took so long that everyone else had boarded by the time we got on!), and were lifted into the aircraft by a vehicle with a very high tail lift…super! No more struggling up the steps carrying a heavy daughter, shepherding 2 bemused boys, carrying 5 cases, and looking for 5 seats, hopefully together!
We’re flying Ryanair, remember?
Unfortunately, Ryanair being Ryanair, that’s where the helpful service ended! Although the row of seats reserved for those with reduced mobility had notices stating such on them, they always had people sitting in them, who then had to be moved by the staff, and oh! they were not happy at having to move, I might add! Ryanair knew we were flying with them, that we had booked assistance, all they had to do was block off those seats…IT’S NOT ROCKET SCIENCE!!! It happened on each of the four flights.
Carys being over 2, had her own seat. She was happy to sit in it, played with her toys, watched Peppa Pig DVD’s on her personal DVD player (our best idea!), listened to music on her little pink headphones (our second best idea!), sat on our laps for cuddles, songs and to sleep, and generally behaved like a little angel. I’ve never seen her more relaxed.
Who wouldn’t enjoy warm sunshine on their skin? Splashing in the sea? Jumping in the pool? Playing in the sand? The sights and smells of somewhere new? Trying new exotic tastes of food and drink? Listening to melodic foreign voices? Dancing to strange, exciting music? Children with special needs might not understand that they are in a different country, or that they are on holiday, but that doesn’t mean they can’t relax and enjoy it, take it all in and absorb it, and benefit from all these new experiences. They deserve the break as much as the rest of the family do, and don’t underestimate them, they get just as much out of it, too.
Carys is so happy and chilled in Kalymnos, we might just have to retire there!
What has been your experience of travelling with your special needs child? I would welcome your thoughts and questions, so please feel free to comment here. I am no expert, I can only tell you what I have learned through my own experiences with my daughter Carys.