If I had to pick a defining characteristic for myself, it would be a lack of fondness for routine and schedules. If I had to pick a defining characteristic for my son, it would be his fondness for routine and schedules. Where did this kid come from?
But over the years I’ve learned to create routines and stick to them, because when that routine gets shaken up, that’s when my son’s meltdowns happen.
As a kid with autism spectrum disorder, my son has a hard time deciding what’s the right reaction to a situation. The more he can predict what will happen, the better prepared he is with his responses. He knows the procedure and the behavior expected from him when he’s already been through it before. Take away that routine and he gets very anxious and irritable.
He also has sensory processing issues that overwhelm him, so on top of trying to understand what’s going on, he’s faced with a regular assault on his senses: too much noise or light, heat or cold. And just to make life a little more interesting, he’s got language processing difficulties—not always understanding what you’re asking him, or asking him to do.
So, when holiday travel time rolls around, these difficulties combine into a perfect storm: irregular schedules, weather changes, new places and new procedures, crowds and their noise, delays and delays, and always the admonishments to hurry. At some point, the anxieties accelerate into fears, and he just starts shutting down, maybe into an unmoving heap on the jetway.
A holiday vacation or visit to relatives is, for us, an exercise in staying ahead of the panic, and massaging chaos into routine. We hope to recognize his difficulties before he does, and find workarounds that allow him to feel like he has some sort of control. Then, sometimes it takes a vacation to recover from vacation.
So how do we get through a trip?
First, I try to have a sit-down with his sister, to prepare her: she’ll see behaviors from him that seem to come out of left field, because–unlike her brother–she loves adventure and change. We have to remind her that it’s scary for her brother, that he may panic as his ears stop up during the plane’s descent, or obsess over whether TSA will confiscate his brand new toy. This helps her understand him better and respond to him better when he’s upset.
Then of course I start to “prime” my son, telling him little by little about the upcoming trip. I don’t usually talk about trips more than a week in advance, because he still has difficulty with time and sequencing. Giving him too much time to think about the trip before it happens lets him ulcerate over potential problems until they are blown out of proportion. I tell him where we’re going and whom we’re visiting, and show him the date on the calendar. I talk in vague terms about departure time and mode of transportation, and try to remind him of fun details from the last, similar trip to get him in a positive frame of mind.
Then I start packing: this includes his favorite foods for transit and arrival. Since he’s so particular about food right now, he always asks what there will be to eat, wherever we go. When he can control that, the rest of the world is a slightly less scary place. Sometimes the person we’re visiting even offers to buy his favorites, to have on hand. I also scope out the weather reports and bring his favorite clothes, including extra shoes and socks. I carry a change of clothes with me, because wet pants or spilled-on shirts can make him melt down. But when he sees how easy it is to solve these problems, it reassures him in that moment, and hopefully, eventually, he’ll generalize that easy solutions can often be found to unexpected problems, throughout life.
I create a visual schedule of our travel days, and try to keep a copy in my bag, or his, so he’ll know the sequence of transitions, and understand when the demands on him will end, so he can chill with dominoes, or whatever his obsession du jour is.
If the place is new, or we haven’t visited in a long time, I try to get pictures of the room or building or people to help him feel at ease when we get there. The more he knows in advance, the more he relaxes. Travel booking sites and review sites often have pictures of the hotels and rooms.
Since he has sensory issues, it helps him to have a fuzzy pillow or soft blanket to use for deep pressure and tactile input to help him stay regulated. Fleece clothes and heavy jackets clam him, when it’s cool enough to wear them. Chewing foods like gum or dried fruit or gummies is another way to relieve stress, and it helps with the effects of air pressure changes on the ear, riding in a plane.
As with any child, bringing his favorite toy or book (and fresh batteries) keeps his interest, and smooths travel and transitions.
I try (!) to get to airports or train stations a bit early, and if there are delays or complications beyond the ones I can solve, I tell the airline associates what’s going on. I carry a copy of my son’s diagnosis, and I’m not above working the Tired Mom look and asking for help—sometimes it works. When I can remember, I try to give his sister fun or important duties so she doesn’t feel like she’s just getting in the way of her anxious sibling. She’s gotten very good at recognizing when he’s stressing and calming him with distractions.
When my son was younger, he would wear a backpack with a long strap attached . Some people object to putting their kids on a “leash” because they think it’s embarrassing. Newsflash: little kids don’t care what anyone thinks, and you can’t always hold a child by the hand, especially when travelling. I decided to toughen up my skin and found the Leash worked really well to keep him out of trouble, AND I could still look around a little at the scenery on hikes without him going off a cliff. Even the backpack aspect was helpful, because when stuffed, it could offer a very grounding weight for his nerves, and may or may not have had the added benefit of slowing him down a little bit. He liked carrying his own most important stuff. These days he carries a regular backpack when we travel, and likes to pack it himself. I also sneak in fun surprises and treats to keep fingers and jaws busy, plus a small water bottle.
Once we’re underway I do my best to explain everything that’s happening or going to happen. He always wants to know why. How long is the car ride, where does our luggage go, why is there a line for security and why do kids get metal detectors and grownups get radiation???? Though he’s been on a plane before, we go over the rules before boarding and talk through how to open the bathroom door when it says “vacant,” how to lock and unlock it, where the “flush” button is etc. etc. etc., ad nauseum (for the rest of us), but for him the repetition is his means of control and comfort .
Of course I go crazy with praise and stay as upbeat as I possibly can while faced with the modern version of torture that’s airline travel. We brainstorm solutions to problems on the fly, and always try to help him understand how much time is left—he wants to know the endpoint, and occasionally wears his own watch. Then he knows when can he get off the plane, and away from the crowds.
At the destination, it’s great when there’s time and energy to work in a little OT exercise, or even yoga, to help him decompress on his first night for the best rest possible (under the circumstances).
It’s a lot of effort, I won’t lie. But the new experiences and the challenge help him grow. And when I get tired or exasperated, I try to remind myself just how much harder it is for him.