Everything I Know About Traveling With An Autistic Toddler

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(Just kidding…. sort of…)

We’re going out of town for my grandmother’s 90th (!!!!!) birthday this weekend. She is – to put it mildly – a force of nature and such an important part of my life that I can’t even begin to put it into words. The good Lord would have to smite the highway off the map for us to miss that, but the length of the drive (7 hours one-way) is well outside even the outer limits of our traveling comfort zone. Also, two nights is usually our limit before the lack of routine and the exhaustion that builds up from him not sleeping in a not-familiar place blows us all up.

Not surprisingly, it’s awfully hard to drive seven hours, stay two nights, and drive seven back. For this reason, we haven’t seen my grandmother nor most of my side of the family in well over a year. This has been a very depressing part of our reality. Seeing how much he has struggled with trips half as long as this upcoming one, we’ve been unable to figure out a way to go on any sort of longer trip or any family vacation of any kind. I think it’s been close to two years since just the three of us went anywhere for any length of time.

Mary’s parents are about 3 1/2 hours away, which is still within the realm of a doable, non-cranky ride. Still, two days of crappy sleep for everyone leads to rapidly escalating problems on day three. Oddly enough, he often ends up sleeping with Mary’s mom instead of with or anywhere near us. Go figure. He definitely will not go to sleep by himself regardless. Assuming we survive the car trip home, which has gotten much better over the past year, it has usually taken us a few days to recover and get back on schedule.

One cool benefit of preschool so far is that it has drastically increased his endurance. It used to be that he would go over the edge without some significant downtime in the afternoons. Now, if we bring him home from school and give him a little bit of Signing Time on the TV and a snack, he’s pretty good to go until bedtime. This is a radical improvement for him, and it gives us hope that he’s learning to better manage his emotions and such over the course of a hard day.

Admittedly, his classroom has a lot of structure and all travel pretty much has none. I think the entire lot of us over the span of four generations will be at my grandmother’s birthday. We lost track of how many people this adds up to. Plus his gaggle of cousins are excited to see him. So lots of potential energy will turn kinetic in a big hurry. Still, his recent growth in tolerating hard days gives us a lot of positives to build from.

So, to not completely disappoint readers looking for some actual tips on traveling with an autistic kid to see family, here are some things we do.

1. Try to recreate on the road as much of your normal schedule from home as you can. We bring about everything we can think of that can reasonably be transported to be the same cues, pictures, etc. we use in our daily life. So the food pictures from the PECS board always come along, as do the book we read before bath, the same nightlight, the same bowls and spoons and cup, the same white noise machine, familiar toys and books, and so on.

Our nighttime routine is about the most sacrosanct part of our schedule. We try to faithfully recreate it down to every detail we can control. Unfortunately, for example, no one else has a big garden tub at their house, so having to bathe in a regular tub weirds him out. Still, we do as much as humanly possible to keep as close to the routine as we can.

Remember, sleep is a major part of how well a trip goes. It’d be a miracle if you all get the same amount of sleep on the road as you do at home. I see the sleep goal as just not draining the tank too far. The proverbial car still runs with a low tank; just don’t get to E. Getting through it with some gas still in the tank is a big victory and a recipe for a decent trip.

2. Music! And when that fails, try other kinds of music. J-Man is a seriously musical child. We survived the non-sleeping era (i.e., the first 18 months of his life) through music. It calmed him down and often got him to sleep. My old iPod turned into the cryPod, filled with music that would help him relax and sleep. Pile everything you own that your child might conceivably like on to an MP3 player, jack it into your car stereo, and use it.

Remember, stay ahead of the meltdowns. Don’t wait to play it when a meltdown is in progress; be proactive about it at the first sign of impending doom. Better yet, if you can tolerate it, play it the whole way.

3. Find, borrow, or beg for a portable DVD player to attach to the seat so they can watch it. We really don’t like this option because I’m not much on encouraging kids to watch TV in the car, but when it’s a choice between that and a pissed off banshee screaming while I’m driving on a busy highway, I’ll put my fate in the hands of Dora the Explorer every time. A great time to ask for this is for your child’s birthday or at Christmas since lots of people are inclined toward pity around those times. Plus, you can always say, buy us a portable DVD player and we’ll come visit you.

4. Pack every snack, toy, or bribe you can, and always keep them within arm’s length. Remember, travel is about survival and getting there. Don’t get all moralistic about it. Get there sanely by any means necessary. A couple of days of this isn’t going to spoil your kid, and he or she is already going to be thrown off by the whole adventure anyway. It’s not like this is going to make that worse.

5. Get out of the car every couple of hours. We used to grit our teeth and drive relentlessly just to get home and get it over with. In the not-so-long-ago, getting out of the car made everyone happy, but putting J-Man back into the car just brought on fits. I don’t blame him; I didn’t want to get back in either. Now, the fresh air does us all some good. We walk him around, let him play with some leaves, or whatever strikes his fancy. It’s a good stress reliever, and lately he’s been OK with getting back in.

5a. Stop at places with Starbucks’ or other coffee establishments. Order the bucket-sized, dark roast, with a couple of espresso shots dunked in for good measure. (Called a ‘depth charge’ at one place I used to go to.) You need your caffeinated wits about you. Fun fact – I once ordered (not intentionally) a ‘caffeine frappucino’ at Starbucks. They looked at me funny and then we all broke out into hysterical laughter. The understanding barrista’s reply, “Yeah, I’ve got a toddler, too.”

6. Politely tell your family that during your visit, you make all the rules. You are judge, jury, and perhaps even executioner. Spell out some ground rules ahead of time based on the kinds of structure and scheduling you know helps your child, and be clear that if your child is showing the first signs of problems, even Lord God Jehovah with lightning bolts raining down from on high will not move you from your schedule and rules.

If your relatives are interested in learning more about how all this works (and I hope they are), take that as a teachable moment and be prepared to educate. Remember – we do this all day every day. They don’t. They may need Autism 101 in order to understand why we do all this stuff.

Our big one has always been, “You cannot schedule anything between 2 and 4PM” so he can get his downtime. They may not understand why you are so unyielding about something, but tough bull cookies. Your job is to get your kid through the day without melting; anything above that is pure, sweet, milk gravy with little bits of sausage in it and all poured over a hot, flaky biscuit. Mmmmmm… biscuits and gravy.

OK. Right. Where was I? Yeah. You can be flexible if your kid is having a great day or seems to be handling things well enough, but be prepared to do whatever it takes. People will get offended. Tough. If after you’ve explained the situation they still get up in a wad about it, it’s a lost cause. You’re there to look after your kid.

And at some point, when you have an autistic kid, you get used to people being pissed off at you about something. Those callouses get thick. You’ll stop worrying about it at some point.

I probably have more suggestions, but speaking of sleep, I need to do that. If you have suggestions, feel free to leave them in the comments!

Posts that hopefully are similar:

• As If We Forgot That We Don’t Travel Well
• Surviving a Long Trip and a Baker’s Dozen of Things We Learned
• What’s Your Autistic Toddler Like Now? (Part 3)
• Getting Off My Own Routine
• Such a thing as too much attention…
• All the Good Things
• When the Only Thing Routine is the Lack of Routine

Tagged as: ASD, Autism, Behavior, Preschool, School, Sleep, Travel