Adventures with Autism…
In my “Too Many to Count” list of “Things Tried” to help our daughter break out of her restricted-interest-rut, the one I share with you today beats all. Yes, mama pulled out all the creative stops with this one. It was going to be one for the record books I was certain. That did indeed turn out to be true!
When your child enjoys (count them) three things – done over and over all day, it can be maddening. In our case, it is (1) car rides (2) showers (3) cheese. A perfect day for Miss Carrie would be rising early, having a cheese plate for breakfast and then a long shower, followed by a very long car ride leading up to a cheese plate for lunch, followed by a shower and another long car ride. This sequence would continue until all the cheese, hot water and gasoline were gone, only to be replenished the next day because she is sure that an endless and free supply of these vital elements exists.
Fellow parents, you know what I’m talking about! Some call them obsessions or compulsions or perseverative behaviors or restricted interests. Whatever you call it, our kids are stuck doing it – riding elevators, taking bus rides, talking about trains, playing the same two minutes of a video, swinging, you name it.
In our never-ending quest to find something new she might enjoy, we sometimes get wild and crazy and try for something we too might enjoy. This was the case when I got the bright idea to rent an RV and take her for the longest ride of her life in a vehicle where she could also take a shower and eat cheese. We did our homework by going to the RV show and researching destinations that at least two of us would enjoy.
Oh my! We saw everything from small pop-ups to half-million dollar vehicles that felt more like a house on wheels, complete with a real bedroom, full dining room and multiple big screen TVs. Some even came with a deck for sunbathing or fishing and yet another big screen TV on the outside for tailgating. I tried to picture the three of us lounging on that deck. Nope. Lounging isn’t something we do. But it was a nice little daydream while it lasted.
We chose a nice 26-foot vehicle with one bed, a dinette that folded down to something resembling a bed, and a sleeping area (also not a bed) above the cab of the vehicle. We chose Long Beach as our destination as it was not too far but far enough to make for a good long ride and grandma’s house was on the way just in case we needed to stop.
The day before, we packed up everything but the kitchen sink because the RV had one. Our checklist was long and included: favorite blanket and pillow. Check. Favorite foods. Check. iPad. Check. Portable DVD player just in case wifi didn’t work. Check. Mattress pad protectors. Check. Stroller for going into town. Check. Her medication. Check. Bottle of wine. Check.
On the morning of our departure, we awoke eager to hit the road. She and I sat at the dinette where we placed her looking forward so she could enjoy the full view ahead and to both sides. Papa was at the wheel, ready to roll. With hopes high and fingers crossed, we pulled out of the driveway.
Not long after we got on the interstate, we got our first sign. She put her head down on the table and started her vocalizations that said, “I am not enjoying this at all. What were you people thinking?”
We forged on, knowing that she is often unsettled with new experiences and needs time to warm up. When we stopped in Longview, we got our second sign. She climbed in grandma’s bed and pulled the blanket over her head.
We coaxed her out with, you guessed it, mac and cheese for lunch then got back on the road. The one that mama forgot is long and winding as it gets closer to the beach. By then the vocalizations were loud and intense so the secret weapon came out – string cheese. She had not yet realized there was a fridge in the big tin can she was riding in! I spent the last part of the drive, wrestling with her as she tried to get out of her seatbelt to raid the fridge. Exhausted, I waved the white flag and fed her thin slivers of mozzarella for the remaining half hour.
This story is getting as long and rambling as our misguided trip so I will cut to the chase dear reader. We never saw the beach. We never took the stroller into town. We also never slept. Our RV boasted the capacity to sleep five and somewhere in RV land, five people were sleeping in their make-shift beds but in ours not a soul slept a wink. As soon as the sun rose, we grabbed a Big Gulp Coffee and headed home. The return trip was much like our departing one but this time we were all unhappy non-campers.
Did I mention that our RV had a step up to the bathroom? I remembered it going up but forgot it going down. Wham. Mama did a face-plant and got a bump on the head to remind her to think twice when she gets another bright idea.
One of my mindfulness strategies is to look for a silver lining in things that don’t go as well as planned. It took several weeks for me to even think about the trip, much less find something good from it, but here’s what I came up with:
First, we have a much clearer idea of what it is about her drive that she likes. It’s the motion but also looking at things in our neighborhood that she can focus on rather than the blur of trees and cars on the busy freeway.
We already knew that she is skittish the first time for most things but we underestimated the over-stimulating sensory input of the RV on the road.
Compared to our cars, RVs are noisy.
We did it. We had been talking about doing this for a couple years but always got cold feet thinking about the unknowns.
We didn’t give up. We could have turned around as soon as she whimpered but didn’t. Even though it was exhausting for us, we pushed her comfort zone.
Will we try again? Don’t hold me to this (it’s still too soon!) but I think so. Next time though, you might just find us parked in our driveway where we stay put until we all feel ready to roll again.