Time for a Holiday! That'll be Relaxing... right?!

This is it… my first attempt to provide helpful advice advice (albeit via some slightly unusual holiday choices)! Some of it's pretty niche, to be honest - only 6,000 kids a year in the UK are born with a disorder that goes undiagnosed, but I hope it’s useful to someone! And if it is relevant to you, please check out the Genetic Alliance’s SWAN (Syndromes Without A Name) group, filled with people who have no idea what’s going on with their kids, and a great resource for tips!

Before our kids were born, Pat and I went on holiday all the time – it was our favourite thing to do. Inevitably, Connie came along and did her best to ruin the good thing we had going, but actually, she visited 13 countries in her first year, so we didn’t do too badly… but then Covid had its own ideas and Obi turned up towards the end of that, so our frequency of travel reduced significantly!

Up until he was 2, we could travel with Obi like a baby, pretty much normally. I did quickly learn that I needed a spare outfit for me AND him on even the shortest of flights (somehow I’d get covered in vomit immediately on arrival at the airport), but most annoyingly, I’ve now had to accept the fact that having a disabled child means having to pick up the phone to book things that previously I’d have just done online.

Frustratingly, that goes for tickets to the theatre, family activities, hotels and more. I’ve been in denial about it because I find it tough to fit in phone calls that aren’t work, but usually, speaking to someone really is the only way to get any additional support you need, especially if you can’t just tick a box to explain your child’s condition. More often than not, rather than achieving anything particularly useful with a call, it ends up being a case of turning up somewhere to speak to clueless members of staff, but having the confidence to say “I spoke to someone on the phone who said this would be fine”.

It was slightly worrying when that led to us just taking Obi’s pram onto the ice rink at Battersea Power Station with very confused looking teenage staff members just accepting my assertive “it’s fine, we called ahead and paid!” line, but we had a lovely time, so it must have been worth it!

Redefining Relaxation

We’ve never been beachy fly-and-flop people, but with two kids we were mentally prepped to try out the all-inclusive life, and see what it was like to just sit by the pool with a kids club for a bit of P&Q every day.

But now, I couldn’t think of anything worse than a resort. It’s not fair to ask any ‘mainstream’ kids club to take Obi – most have a 4-year minimum for a reason, so while Obi is technically in that bracket, it would be pretty harsh to force his 12-18 month physique / 6-12 month mentality on them! And for those who will take any age, it’s just increasingly unfair to expect the normal care ratios to cut it – Obi has a habit of spotting the open doors and the flights of stairs which lead to nothing but danger, and bunny hopping his way towards them. I’m sure we could kick-up a fuss and claim disablism or something, but I don’t know who’s benefiting from that, really – certainly not Obi.

And there’s no way we’re relaxing while Obi’s bounding his way to flopping face first into the pool… but which of us is volunteering to cuddle him while we’re trying to read, when all he wants to do is pull out our hair or gauge out our eyeballs?! No thanks, that’s not my idea of relaxing.

Strapping him into his pram, though, can be. He can’t escape, but we can; pootling through cities, between bars and restaurants, and enjoying the sights in relative peace (we do still have a very vocal 6 year old to deal with, after all!). At least for now though, we can lift Obi up and down steps and manoeuvre the cobbled streets, but I suspect the story will be a little more frustrating in a couple of years when he’s (hopefully) grown a bit and graduated into an actual wheelchair.

And surprisingly, driving is also pretty easy with the kids. A mirror and Freddie the Firefly toy keep Obi so entertained he refuses to nap on the road, and thank goodness, Connie doesn’t get sick when reading, so road trips are absolutely on the cards for us.

And I’m not complaining; in the last 12 months we’ve managed a fabulous few days in Vilnius, a wonderful week in Rajasthan, and a really spectacular half-term in Bosnia and Herzegovina (where I learned that the family snow-boarding holiday Patrick wants is absolutely out of the question for at least a few years – hanging out all day every day with Obi in an apres-ski bar is another example of not relaxing!), and are busy planning our next family adventure.

The common thread for all these slightly random locations though is that they are on the cheaper end of a holiday, meaning we can afford connecting rooms in a decent hotel, without spending our annual budget in three days.

Booking Hotels

I don’t go on holiday to share a room with my kids and sit in silence after 7pm. I insist on suites or connecting rooms, which obviously costs, but I’d rather have fewer decent breaks than more shoved into a tiny ‘family room’. And yes, Airbnbs are easier, but call me spoilt… I really don’t want to spend my holiday cooking and washing up!

Despite being 4-ish, Obi sleeps in a normal cot (giant hospital-style bed is on order…), so a normal bed would be unsafe for him, even with guards. But when you’re searching for hotel rooms, the age of a child can impact search results because algorithms make assumptions about what that child will need. Instead, I search for a 1 year-old because his needs are basically the same, and then select rooms accordingly (changing the ages so I don’t accidentally cheat on price!). For example, a suite with separate living area (with sofa-bed) will come up for a 6 + 1 year old search, but they won’t do it for a 6 + 4 year old, because they assume the toddler will need a real bed.

Another thing we’ve found is that if you’re hiring a car, calling ahead to hotels and explaining you have a disabled child means they can often reserve a decent parking bay in advance, even if they wouldn’t usually do so. These silver linings are totally worth exploiting so you don’t have to shlep your luggage and kids too far in a dank underground car park!

If you’re looking for interconnected rooms, Hilton is the only major chain I’ve come across where you can guarantee connected rooms on booking, although we did stay recently at a Marriott where one quick phone call after online booking meant I got them confirmed because of Obi being disabled – they couldn’t have been more helpful.

Packing and Prep

When travelling with medicines, don’t assume the security staff in airports will try to be helpful. Some are, of course, but others… not so much. Obi’s got a minor allergy to nuts which can be treated with a simple dose of liquid Piriton, but trying to get that into hand luggage has proved challenging on occasion! Carry print-outs of prescriptions or diagnoses from your doctors, and that should avoid any unnecessary hold-ups. 

Don’t panic. You’re unlikely to be going somewhere they don’t have children, shops or pharmacies! You can’t predict any child’s behaviour on a plane (that’s nothing to do with being disabled or delayed, that’s just kids) so you just have to mentally prepare yourself for anything, and take plenty of distractions. On one flight, Obi kept himself amused with a water bottle for a good 90 minutes, so the simple things can work too!

Alt Text: A blue sign with symbols showing a pram is equal to a wheelchair

One of the most helpful things we’ve done is get disabled badges to put on his pram, to demonstrate that it’s a wheelchair. The symbol is international, and it smoothes our path in all sorts of situations where language might be a barrier.

And don’t forget travel insurance! Even if your child is undiagnosed and not actually sick on the day-to-day, you must register their symptoms or risk not being covered if something goes wrong. We didn’t need a specialist provider and we didn’t have to pay any extra, but we did have peace of mind that if something happened, we’d be covered.

Flying

Did you know that the rule about child extension seatbelts is nothing to do with size, and all about age?! We of course had to buy Obi his own seat when he reached 2 years old, but… he couldn’t really sit on it, so we were a bit flummoxed to be told that it was against the international rules for him to have an extension seatbelt! He had to take off and land on his own seat, even if that meant him sliding off it / lolling sideways onto our poor unsuspecting fellow passengers or trying to escape the entire time.

You can call ahead and provide a doctor’s letter / evidence that your child needs the additional seatbelt and the airline will accommodate that. You can buy professional seating solutions if your child needs additional support (check your airline’s approved seats before spending any money, though – they all have different rules). On our recent trip to India, we discovered that a £25 booster cushion with a harness (something like this) was the perfect solution to keep Obi in place for the duration. We hadn’t packed it for that reason; we just assumed – rightly – that there wouldn’t be lots of highchairs in Indian restaurants so took it as a back-up, but it was ideal!

We couldn’t use it for take-off or landing, but the airline staff grabbed us a bunch of duvets and pillows from first class to help make his journey more comfortable. Again, we’d tried to contact their support team after guidance from staff on the way out, but the knowledge of the air steward teams about what support was available was outdated, so in the end we just had to ask for all the help we could get once on the plane, and we got lucky.

Everyone says ‘call the accessibility line for support’, but it’s almost impossible to have a useful conversation when you don’t need wheelchair assistance – deviation from the script doesn’t work! We’ve found that it’s completely dependent on the airline and the airport as to what’s on offer in terms of support, but a note on your booking – even if only added at the baggage drop desk – can really help make it less of an issue to get an additional piece of luggage onboard (e.g. the Yoyo, AKA Obi’s wheelchair) or kit from the flight team to help you out. Even the most budget of budget airlines have allowed this for us, although the conversations and processes seem to be completely different on every flight!

The holiday effect added bonus

The one thing we’ve really noticed from our holidays is how they have helped build the relationship between Connie and Obi. They always get on, but each trip has proved a bit of a shift in how they behave together. I guess this probably happens with all siblings when they’re forced together 24/7, but it seems to give them time to learn to play a bit differently together.

Last year we spent New Year in Bratislava, where ‘Connie Transport’ (Connie bum-shuffling at an alarming pace with Obi clinging on to her legs) became a thing, and in India, Obi wanted to play with Connie so desperately that we had to switch his cot for one with better brakes, as he worked out how to shift closer to her when he should have been going to sleep! And recently in Bosnia, they managed to develop games while we were driving, with Obi copying lots of Connie’s sounds – definitely great for his development, and she found it all absolutely hilarious, so it kept everyone happy!

We love holidaying with the kids, and while we know the shape of them is going to change, every family has to accommodate its own little quirks, so ours will do the same. It may prove slightly more restricting for us over time, but that’s what grandparent childcare and weekends away are for. And wine and cocktails, of course.

What We Learnt:

1. Take Advantage of the Disability! It doesn’t always happen, but sometimes, life is just made that little bit easier for you by people just trying to help. Take that disabled spot right by the door, and enjoy it!

2. Airlines are Great… at the airport: This one totally depends on your needs, but for us, playing the ‘please help us make things easier with our super cute disabled child… can you believe he’s 4?!’ card is the most effective hand of all.

3. Holidays are always worth it: Forget having a disabled kid, it can be hard work to plan any family holiday, and then the packing / shlepping everyone to the right place at the right time and then making it through hours on a plane can be tough enough to make you not want to bother. But then you arrive, and you’re there. And there’s amazing food, sights, sounds and experiences for you and the kids, and it’s totally – completely – worth it. Assuming you’re not sharing a room with them, that is…