Autism Road Trippin’

Autism Road Trippin’ August 20, 2014
Lil D lying down in the back seat, arms drawn in, hood up, spinning his beads, at the end of a very long road trip.
Lil D lying down in the back seat, arms drawn in, hood up, spinning his beads, at the end of a very long road trip.

The whole summer was leading to this moment, this trip, this foray back into autism road trippin’. Were we up for the challenge? Would we be fools for trying? Was it too much to ask of Lil D? Was it too much to ask of our other children, of each other?

When is it worth it to pursue a family vacation, to push each other’s limits, to stretch against the bubbles of our comfort zones in the name of family togetherness, in the name of life lessons, in the name of growth? And when do we say, no, this is not worth it. This is asking too much of Lil D, of each other, and for what? For the semblance of family togetherness? To prove that we can do this?

How do we find the balance between the two tipping plates of the scale? How do we know we’re doing the right thing from him, first and foremost, and then for all of us?

We don’t. We never know for sure. But we sure as heck keep trying.

We’ve traveled a lot with Lil D and our other children. We’ve done things that even for us, when we look back at it now, seem incredulous. As in — we actually did THAT? What were we thinking? Man, we had guts. Wow, Lil D just went with whatever we were doing back then. We flew to India — twice — with him. The second time we went, we had all three kids with us, and H was a mere 2.5 month old baby at the time. A was four and Lil D was seven. I mean seriously, how did we do that? All our outings with Lil D must have an escape or abort plan, and there was no such option on a 17-hour flight to India (with a stopover in Qatar). But we did it.

And afterwards, resolved – Never again.

We’ve driven countless times to visit family on loooooong car rides — 10, 12, 14-hour car rides. And several times on these trips, the in-laws have traveled along with us as well, making it seven people in a van for that long of a drive. After the last such trip to a family wedding five years back, we made the same resolution:

Never again.

But, not wanting to give up our ability to travel, and my determination not to stop trying to teach Lil D how to cope with traveling and for us how to travel together, and not wanting to submit to a future of entirely Fractured Family vacations — the husband and I determined to give it another go. Sure, we do short trips often. I even drive alone with my kids to visit my parents, which is a two-three hour drive. But it had been more than four years since we had ventured, all of us, on a long road trip together. This year, we decided, was the year to give it another shot.

Suffice to say, there was a lot riding on this trip. As much as we didn’t want to put pressure on ourselves, on Lil D and on our other children, we knew this trip was a litmus test for whether we’d have the gumption to try this again in the future and to put these kind of road trips back into our rotation.

If family road trippin’ is an exercise in fun, loss of control and a little lunacy, then amplify all of that for autism road trippin’. For a teen who needs to have his space, who has sensory issues that must be considered, who has special dietary needs and meds he must take on a precise schedule, who cannot handle close quarters with others for long periods of time, who doesn’t do well outside of the necessary parameters of his home and school routine — taking a trip like this was asking a lot. A lot. And, because we are a family with three children, Lil D’s younger siblings’s needs are equally important. How can we attend to Lil and his sibs at the same time? How do we make sure everyone is safe and comfortable? Should — not if  — Lil D have a meltdown, how do we make sure his siblings are safe and not scared? Sure, they have seen it all from him, but things can still get pretty scary sometimes.

And, if a vacation is meant to be fun and hopefully relaxing, how do we shoot for that when there are so many things to consider, to keep track of, to make substitutions for and to, well, manage? Will it be worth it?

Well, let’s start by saying that we made it to our destination in one piece. Alhumdullilah to the millionth degree for that. Because the family pulled together in a myriad of amazing ways, because we breathed through it all, laughed through it all and supported each other through it all, we got here with relatively good moods. That was step one. Step two is our time spent on vacation — to enjoy and make the most of it in the best ways possible. Kudos to my sister-in-law and her family for being so chill with us and letting us lead the way in what works and doesn’t work. Step three will be the return home.

We’ll worry about that in four days.

In the meantime, here are the Facebook status updates I shared along our journey to our destination. Hopefully you’ll get an idea of our unique style and challenges of autism road trippin. If I have the energy, I’ll post a wrap-up when we return.

August 17 at 7:42 p.m.

Bismillah. And we’re off! Let’s DO THIS.

‪#‎autism‬
‪#‎autismroadtrippin‬
‪#‎NoFracturedFamilySyndromeThisTime‬
‪#‎YaAllahLetThisGoWell‬
‪#‎AminaLookingForwardToTheKhatar‬!

August 17 at 10:12 p.m.

Ok, 95 sucks and I had hoped we’d be farther along by now. But aH for smooth sailing this far and a Lil D who is winding down.

A large part of parenting when one of your children have special needs is creativity. While a few years back the challenges were different with them all younger and having more needs, and D still having anxiety and low tolerance for long stretches of driving, now all are older.

But older means a physically bigger D, and the anxiety manifestations and meltdowns are therefore bigger and tougher. So the best solution I’ve come up with is to put A in the front seat with her dad, because she is old enough now, and I sit in the middle with H, and D in the back seat.

So I can be in arms reach of all the kiddos and diffuse things as needed. Plus A is having great convos with her dad. And I get to have tickle battles with Lil D and H.

It’s about as good as it gets in autism land.

‪#‎autism‬
‪#‎autismroadtrippin‬
‪#‎WhereIsThereABathroomOnThisHighway‬?
‪#‎NoTrafficAllowedOnOurRoadTrip‬

August 17 at 10:50 p.m.

Cue Lil D’s nighttime anxiety and crying. Hood is up, arms are pulled in and small pillow stuffed up his shirt. In this small enclosed space of a car, nothing we can do but hold tight and pray for him to find his calm soon.

‪#‎autism‬
‪#‎autismroadtrippin‬
‪#‎MakeItEasyForHimPls‬

August 17 at 11:52 p.m.

The car carrier on top, which we rarely use, is making this intermittent loud vibrating sound that is reverberating in the car. It’s annoying the heck out of me, and I’m sure it’s a big reason why Lil D can’t settle down and is still upset. Imagine an annoying noise and then amplify it hundredfold for one with sensory issues.

‪#‎autism‬
‪#‎autismroadtrippin‬
‪#‎auditorysensoryissues‬
‪#‎serenitynowplease‬

August 18 at 1:50 a.m.

Made it as far as we could safely go and now stopping for the night – though kids are finally sleeping now and the vibration problem has been put to bed. Makes me want to keep going, but we are tired. I was hoping we’d get to within four hours of our final destination, so that tomorrow Lil D and the rest of us would have a tolerable distance to go in daylight hours.

But the parking lot that is 95 laughed at my plans. So six hours of driving tomorrow. Khayr – aH for it all. We are all together – no man left behind, and that’s something big.

‪#‎autism‬
‪#‎AutismRoadTrippin‬
‪#‎HusbandMustThinkImNutsForSharingThisWithAllYou‬
‪#‎PartOfABiggerPlan‬
‪#‎GoodNight‬

August 18 at 11:26 a.m.

You all ready for more? Back on the road, rested. It’s going to be a longer day of driving, not how I had hoped this would go. But it’s a vacation and there are no time tables. We’ll stop, move around, take deep breaths and enjoy each other iA.

Lil D woke up all out of sorts, but bless dear A. She said, Mamma, put on some Quran on your phone. So we did and she rubbed his back, and eventually the hood came off and arms came out of his shirt. Now we’re on the road and the sun is shining.

Ya Allah – let it be a good day.

‪#‎autism‬
‪#‎autismroadtrippin‬
‪#‎AliKidsFTW‬
‪#‎BabaIsPrettyAwesomeToo‬
‪#‎NextUpdateCouldBeTotalOppositeThough‬

August 18 at 12:37 p.m.

A – we should stop and give Bhai (Lil D) lunch soon. He’s trying to eat so much stuff from the food bag.

Me – yes we’ll stop soon.

A little while later:

A – can we stop before Bhai starts crying? Let’s give him lunch before it’s too late.

Ladies and Germs – meet A, well-versed in her bro and autism needs. 

‪#‎autism‬
‪#‎AutismRoadTrippin‬
‪#‎FamilyFTW‬

August 18 at 4:05 p.m.

Everyone should adopt this motto:

Everybody have fun tonight.

Everybody Wang Chung tonight.

‪#‎autism‬
‪#‎AutismRoadTrippin‬
‪#‎AreWeThereYet‬?
‪#‎AlmostThere‬!

August 18 at 5:15 p.m.

So close I can taste it. And he is so done that it is palpable. Let’s get there get there get there. You’ve done good Lil D in a situation that wasn’t to your liking. And you’ve been great as well A and H. 

Come on folks, push us through to the end! Hope you’ve enjoyed, or rather learned a little more about living with autism by coming along on our travels.

I wonder what the updates will be like on the drive home?

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