Travelling with a child who has Down syndrome

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Well I may not be able to give particularly great advice in many areas, but travelling with kids is probably my expert subject. We have travelled regularly as a family since the boys were born, and I’ve also flown solo on long haul flights, with 2 small little ones many times. We’ve travelled by air and land, we’ve managed 9 hour flights, more than 1 flight a day, 12 hour car journeys and 9 hour bus rides. I like to think I have a little bit of knowledge about this!

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So is travelling with a child who has Down syndrome possible?

Absolutely! Before River was born and we just had a little Skyler, whether we could travel or never even entered our heads. We just did it. Some people hate travelling with kids and it stresses them out; others love it and have amazing family holidays. We’ve loved it and have created some wonderful memories travelling with our children.

So when River was born and later diagnosed, we knew that not travelling anymore wasn’t an option. He deserved to have the same opportunities as his brother, and have a chance to see the world and all its uniqueness. It was just really important to us that River got to experience the world in exactly the same way that Skyler did, having a learning disability shouldn’t take away his chance to explore this planet! And not only that, taking those opportunities away from Skyler’s childhood just because he had a brother with Down syndrome also wasn’t an option for us. We just had to make it work. So that’s what we have done, and so far we have had a brilliant time.

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Not being able to travel anymore is a genuine worry to many families

When you’re given a Down syndrome diagnosis for your child, it’s so hard not to picture all the worst case scenarios. Of course at the top of the list is health complications and value of life, you worry that your child just can’t live a great life or have any type of worth as a human being. As far as those worries are concerned, they can and they will, as long as you believe in them. But just behind all of these very real worries, is the thought that your life will have to change and the life of your family. You won’t be able to do all the things you’ve always done, your life will have to change and that isn’t fair on your children that are already here. It is very hard to imagine the good life you can have with any child, disability or not, when you’re so frightened of what it all means. The unknown is a terrifying place!

Travel is very high on the list of worries, and for families who love to travel this is a genuine concern and one that nobody should feel guilty about having. I completely understand why people may think that travelling wouldn’t be an option and I also understand why that may make them question whether or not they want to take on the life of a ‘special needs parent’. But I’m here to tell you that it doesn’t have to be that way, you don’t have to live a life of doom and gloom. Our family is evidence of that! I’m here to tell you that there is no reason why a child with Down syndrome can’t travel. Even those with heart conditions and other medical complications can enjoy exploring other countries; it just takes a bit of planning. All it takes is a bit of preparation and the world is your (and your child’s) oyster.

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Travel tips and ideas

Firstly, I just want to point out that this is entirely my experience and opinion. I’m fully aware that in some circumstances travel just isn’t possible, especially following an autism diagnosis, or a child with Down syndrome who isn’t comfortable with new surroundings. We are one family, with a child who is healthy and relatively easy to take anywhere. You know your children and I am not telling anyone that they are wrong in their decisions or that if you do things differently then your experiences will be like mine.  I’m just saying that it just shouldn’t be assumed that children with Down syndrome can’t travel, as many do and are incredibly successful with it. I’m saying that just because your child has a learning disability, it doesn’t have to mean that travel is not an achievable goal.

So I have written a list of possible issues that might arise during your trip, tips for overcoming them and also just some things to think about when you’re organizing things.

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Location

This is obviously a really important decision, where you choose to go just has to fit in with your family and what you all enjoy. If you imagine yourself on a beach lapping up the sun, yet have a child who isn’t used to scorching temperatures, then chances are it’ll be a bit miserable. Or if you fancy a nice bustling city, but your child isn’t used to busy crowds then again, it will be a struggle.

You really do need to research a location and makes sure it is going to fit your needs. Do you want activities provided? Do you want somewhere with a lot of entertainment? Do you want somewhere quiet and peaceful? Do you love nature? Do you love the city? Are the attractions close to the hotel? Do you like hot or cool weather? Is your child a fussy eater? Do you intend to use transport there? How far is the hotel from the airport? These are all important and relevant questions.

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An extremely important thing for families of children with health issues to think about is the health care in the country you are travelling to. Be sure that you know how far away and where the hospitals are from where you are located. If you have a child with heart complications or a child who gets sick regularly due to a weak immune system, then your mind will be eased knowing that you are well prepared and know your options, and that the medical care during your holiday is good. You will enjoy your holiday a lot more knowing your child will be well cared for if need be.

Every family is going to want something different and have different needs, so choice of location is not going to be the same for everyone. For us we like to just head somewhere and explore, we don’t like package holidays and love to visit the real heart of the places we visit. That’s just how we’ve always done it and it’s what we enjoy. But like I said before, River has very good health and so far it isn’t a struggle taking him anywhere. Notice how I say ‘so far’ haha! For many families, having everything organized and on site will make for a much more enjoyable break.

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Flying

My biggest tip regarding flying – DO NOT board that plane first. It’s offered to you like it’s a huge help, but it’s not, it’s really, really not. In fact it’s a bloody nightmare! You end up happily boarding the plane, smile smugly at the other passengers as you pass them and get on to the plane before anyone else. And then you have to wait, and wait, aaaannnnndddd wait. You can end up being on that flight for an hour longer than you need to be, and the children will be ready to get off again before the plane has even taken off. My advice is to wait as long as possible. I am usually one of the last people to get on a flight and I find it much easier to settle the kids down and prepare to take off straight away. It’s much more bearable to walk around the airport/departure lounge with kids than it is to wait in just one chair on a plane. Don’t say I didn’t warn you!

Endless stacks of kids activities – Don’t bother!

Another bit of advice I have is regarding activities for the kids, just don’t bother. Honestly, other than the things they usually enjoy doing don’t waste your time. It won’t even come out of the bag. If your child has never enjoyed coloring or drawing before, they won’t automatically fall in love with it just because you are travelling. When I first started flying long haul flights with children I read an article with a huge list of activities to do on the plane. I prepared them all! There were various art things, puzzles, stickers, homemade Velcro crafts, a homemade chalk board, a ring binder full of activities to occupy them. Honestly, I arrived after a 9 hour flight and I hadn’t even opened the bag! Skyler was content with watching movies and doing his sticker book which he loved. I advise taking things they already enjoy doing. If they love the iPad, fill it up with games and let them enjoy it for the whole bloody flight if it keeps them quiet. If they love Lego, cars or plastic animals, fill up a shoe box full of pieces and let them build. And if they want to watch movies the whole time, then on this occasion, no amount of screen time is too much!

Always dress your child comfortably, my boys are in pyjama’s for flying whether it’s an overnight flight or not. They’re just loose and comfortable, easy to pull up and down in the toilet and they’ll just feel more relaxed. Another we also do for comfort is take our own pillow, those plane ones are rubbish!

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Be prepared for food bribery!

And snacks, take loads. And when you think you have enough, add some more as you may well need them for bribery. Oh, I just remembered, lollipops for takeoff, I’m never without them. Anyway, snacks. I try and do a mix of healthy and treat but to be honest when we’re on a long trip I’m pretty laid back. Just be careful that you don’t give them an insane amount of sugar, you could definitely end up regretting that decision when you’re chasing a hypo toddler up into first class! If you’re on a long haul flight make sure you’re prepared with real food, you never know what they’re going to serve on a plane and if you have a fussy eater, you could end up with a hungry child. If your children are like mine, then hunger is not a good situation to be in. And unless you want to be calling for the air stewards every 5 minutes, make sure you pack some drinks.

Seat location is also something to think about, and if you can choose your seats before you fly then definitely do so. We always try and get seats at the front of the aisles, there’s always a bit more leg room. In those seats you can also get the baby carry cots if you have a small baby, although if there’s turbulence then it becomes a nightmare game of in and out! Nothing worse than finally getting your baby off to sleep and the seatbelt sign coming on! If you can’t get those seats, then as close to the toilets as you can get. Also in regards to seats, many airlines will supply a child seat for your toddler to use, or you can take your own. Although you need to check before that your seat will fit the plane. This will also be helpful if you’re using a car the other end.

Ear defenders could be a life saver for you if you have a child that doesn’t cope well with loud noises. For first time fliers especially that noise can be scary! The same for airports, they can be loud and busy and ear defenders can help make it more bearable for your child and less stressful for you.

You will never have to see the other passengers again so focus on you

The only other bit of advice really is to ignore all the other passengers who may look annoyed at sharing a flight with children. Although saying that, I’ve flown a lot and have never had any issues, but maybe that’s just my I couldn’t care less attitude blocking them out. I mean I flew long haul once next to a group of 8 drunken men. One of who kept leering at my boobs every time I breastfed River, and I never started an ‘I hate flying with men’ campaign did I. People just need to get over it, you’ve paid for you seat the same as anyone else and nobody is telling them how to behave. A stressed you makes a stressed child, and that is only going to make the whole journey ten times worse. Block everyone out and focus on you and the children, you’re never going to see anyone else again anyway. And just remember, even if it’s the worst flight ever and you’re ready to pull your hair out, it is going to end. It’s going to end and you are still going to have an amazing holiday.

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Pushchairs

If you intend to use a pushchair during your trip, then again location is important. We have one with a suspension system, as the roads where we live are really rough, so luckily it copes on most terrains. But have you ever tried pushing a normal buggy on a beach? It’s impossible! It might be a good idea for you to invest in a decent baby/toddler carrier; there is some fantastic rucksack ones around now. We carry River for hours in ours and it’s really comfortable.

Think of every scenario before you go

An important thing to think about, which is frightening for many parents of children with Down syndrome, is the dreaded ‘running’. It is extremely common for our children to have no danger awareness, and have really unfortunate habits of just running off. This is terrifying for a parent wherever you are, but even more so in an unknown country. River is not a runner yet as he isn’t walking, but let’s be honest, the signs are there that he going to run like the wind! Child reigns, handled rucksacks, wrist straps and tracking devices are all equipment’s that are all worth looking into, and could well transform a stressful holiday into an enjoyable one.

As for pushchairs on airplanes, that’s no problem at all. You’ll be able to use it right up until you board and then it will be waiting for you when you leave the plane. Just inform the air stewards that it’s important that it is waiting for you as you disembark, else you may have to carry your child all the way to the conveyor belt. I’ve been there, and it’s hard work after a long flight. I certainly never made that mistake twice!

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Accommodation

There are so many options available now in regards to accommodation, you’re sure to find something perfect for you and your family. You just need to figure out exactly what you need and what type accommodation will work best. There are all inclusive resorts pretty much everywhere now, with all of your food, entertainment and activities all catered for. This is a brilliant option for many families and takes away a lot of stress. However, if you have a really fussy eater or a child with allergies, then choosing a self catering apartment, a villa or even a caravan holiday could be the best choice. There are so many options, hotels, caravans, camping, cruises (probably not best if you have a runner!), farm houses, villas, beach huts, house rentals. You’re sure to find something that suits your family!

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Doctors Notes, Insurance and Medical Supplies

It’s always best to visit you gp before your trip just to confirm your child is fit to travel. They can give them a check over, write you a fit to fly certificate and provide you with any medication you will need for your trip. It’s also worth writing a list of any needs your child may have to hand over to the airline, air stewards and tour operators, just so everyone is up to speed and knows what to expect. Even if your child has no particular needs than other children while travelling, it’s even worth informing staff of that just so they are clear.

You can apply for a free EHIC card, which entitles you to state provided health care whilst visiting Europe https://www.ehic.org.uk/Internet/startApplication.do. The card will cover any treatment that is medically necessary until you return home and includes pre- existing conditions.

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Also, finding good insurance cover is a must. Hopefully you’ll never need to use it but it’s always best to be prepared. Worldwide Travel Plan, World First, Insurance with and Staysure are all insurance companies that offer cover to people with pre-existing medical conditions.

Like I stated earlier, make sure you research the medical care in the destination you are visiting. It will make scary unknown situations a lot more bearable if you at least have some knowledge about where to go, what to expect and what to ask for.

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Packing

Hand luggage

Two words, wet wipes! Don’t even think about tackling a long travel journey with kids without them! Makes sure you have enough nappies, a change of clothes or two, nappy bags, snacks, lollipops for take off, entertainment for little ones, pillow and any comforter your child may use.

Make sure all of your needed medication is clearly labeled, you can find the NHS guidelines for travelling with medication here – NHS guidelines for travelling with medication.  It’s also very important that you contact the airline in advance if your child needs to take liquids on board. They will not let you take anything on that hasn’t been cleared by the air line, they’re very strict with this.

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Main Baggage

Don’t over pack, save the space for things you’re actually going to need. Do you really need 8 pairs of sandals?

Important things for the children are high factor sunscreen and of course hats, swim aides (life jackets are amazing), swim nappies (reusable save space, but still get a few so you can swill them out), comfortable shoes (crocs are great for travel), small first aid kit ( you’re guaranteed to need a plaster) and don’t forget to pack anything your child takes to bed for comfort. As for clothes, I always take way too much and rarely wear everything I take, I’m yet to learn with that one so my advice is pretty useless in that area.

Luggage may also be something you need to think about. If you are travelling along then a large rucksack will work better, trying to push a pushchair and pull a suitcase is a talent. I travelled once with 9 suitcases (yes 9!), 2 hand luggage, a pushchair with a 1 year old in, a Trunki with a 4 year old on and a car seat! I remember having 2 luggage trolleys full of cases and I’d push the pushchair a bit, go back and grab a trolley, then go back and grab the other trolley. It took ages and I don’t advise it! If you are travelling with a husband, leave the luggage to him J.

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Get travelling and have an amazing time!

I really hope this has helped inspire you into planning a trip. If you’ve always wanted to go somewhere but have put it off due to your child’s diagnosis, just go ahead and do it! See the world and enjoy it, learn about different cultures and different people and immerse yourself in the new. Book that flight, jump in the car or set sail. See the world and fill you and your children’s lives with experiences.

“Twenty years from now you will be more disappointed by the things you didn’t do, than by the ones you did do” – Mark Twain

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Spectrum Sunday

3 thoughts on “Travelling with a child who has Down syndrome

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