Summer is here, and school is out; it’s the prime time for family vacations.
Travelling with kids is always an undertaking but taking a trip with children who have a variety of medical and behavioural needs can be just plain daunting.
Some of our trips have gone smoothly; some not so much, and there are many things that I’ve learned from our experiences.
Road trips have been our preferred method of travel for years for a variety of reasons; number one is that I can envision us ending up in the news as one of those families who had to be removed from a flight due to an unruly child.
We had an episode over a decade ago on a cross-country flight with our oldest son where he screamed in his seat for most of the flight.
We have since had three more children; two of whom have sensory and behavioural issues, and the thought of having to manoeuvre them through the strict TSA security, let alone potentially deal with epic meltdowns at thirty thousand feet makes me a little queasy.
So when we want to get away, our minivan gets us where we need to go!
The minivan also allows us to bring a weeks supply (or more) of our daughter Lilly’s nutritional formula without having to worry about it getting lost en route to our destination, and any meltdowns to be had can be calmed and comforted without the usual side eyes and dirty looks from judgemental strangers.
In addition to Lilly’s formula and tube feeding supplies, we also have our son Chance’s trach supplies and his cumbersome suction machine.
I would rather stash those on the floor on the minivan any day than have to haul that load across a busy airport.
Regardless of the method of travel, I have found that planning ahead is imperative.
I start making my packing lists about two weeks ahead of time, and I also keep a copy of the list in one of our bags so I can check that we have everything when it’s time to leave.
We have to pack a little more than most with all of our kids’ medical equipment, supplies, and medication, and I don’t want to realize halfway to or from our destination that we’ve forgotten something crucial.
I also pack a car-sick kit into our medical emergency bag, plus some extra trash bags and towels for easy cleanup. We learned the hard way how necessary this was after an unfortunate projectile vomiting episode on a remote stretch of road, with the nearest gas station more than 20 miles away.
That was the last time I tried to do a tube feeding in a moving car- lesson learned!
We’ve taken to splurging on hotels that have in-room kitchens, so we can save a little money on meals and avoid meltdowns in restaurants after a long day on the road.
It’s also nice to have extra counter space to sort out all the medical supplies and prescriptions and keep them somewhat organised (as opposed to rummaging through several Ziploc bags in a suitcase- looking for the one you need that is inevitably at the very bottom).
Additionally, it’s a relief to have space for all the kids to get their wiggles out after being in the car all day.
Having to repeatedly tell them to settle down every two minutes, as we discreetly try to tube feed their sister or suction their bother’s trach tube in a public eating place gets weary very fast.
Lilly has certain triggers that will almost certainly guarantee a meltdown, and while some things cannot be anticipated, we’ve found that the more prepared we are about where we’re going and what we’re doing, the better it is for everyone.
If we are going somewhere unfamiliar, I research all I can about it.
We do social stories to prepare her to ward off anxiety and fear of the unknown.
This helps a lot, but of course, there have been occasions where we think we’ve nailed it only to have something happen that snaps us back to reality.
After a great morning at Universal Studios earlier this year, all heck broke loose when Lilly tried playing a carnival-type game that she just couldn’t win.
Frustration turned into a full-blown meltdown in the middle of Super Silly Fun Land, and we had to pack everything up and call it a day a few hours earlier than we’d planned.
It’s exasperating moments like this that make us question why we take our kids anywhere, ever.
Once some time has passed, and we’ve collected ourselves, we remember that this is just another life lesson.
We learn from it, and we strategize about what we can do differently next time to make it better.
We try and remember that for all the stares we’ve gotten when doing medical care for our kids on the go, there have been many kind words, genuine questions, and encouragement from complete strangers.
So, despite the difficulties, we will keep doing what we do, having new adventures, and keep learning new things along the way!