On the Road

When I decided to call this blog post "On the Road," I figured I should quote Jack Kerouac out of context. These are the quotes that struck me as most appropriate for the tales I wanted to tell and perhaps the perfect distillation of what it means to be an autism mom.

"It all ends in tears anyway."
"I had nothing to offer anybody but my confusion."
"We agreed to love each other madly."

******

Every summer, I am invited to return to my alma mater and give a series of lectures. The audience is an eager one, the pay is good, and it's a great chance to see family and old friends. So, every summer we load up the family and make the 6-hour drive from our house to the university. The kids love making the trip, and there are generally no surprises or new things they need to anticipate. We stay in the same hotel and do essentially the same things. We see my parents. And Big Sissy.

Obsessed with his bowling ball.

I suppose the sheer regular-ness of the excursion lulled me into a sense of complacency because I did not anticipate that Stow would lose his shit in the ways he did on this trip. It started with battles over how much he should or shouldn't tilt his chair. Then, it turned into him refusing to keep his seatbelt on. Next, he was hitting his brother and sister and then me. Then kicking the back of the seat as hard as he could to express his discontent. By the time we got to our destination, he was threatening to jump out of the car and Ren, and I were completely spent. For the next four days, Stow proceeded to behave in ways we hadn't seen for months. He was impulsive, unpredictable, and risk seeking. He relentlessly picked on his brother and sister and reacted with aggression toward us. One night at a restaurant, he said, "I want to go back to the ho-towel!" loud and repeatedly for the entirety of the final twenty minutes it took the rest of us to finish our food. In the interim, he tried to run out of the restaurant three times.

Some of you might ask whether we did X or Y or whatever to support or distract him. I can assure you that we probably did. We have, in fact, tried to do everything to help Stow. What we haven't figure out how to do, and in fact, maybe can't do, is to help Stow figure out how to process his anxiety. Change is HARD for him. Social stories, sticking to routines, bringing along familiar lovies and toys--none of these things are doing the trick any more. But, on the bright side, I guess this last short and (supposedly) simple trip showed us that it's time to go back to the drawing board.

When we pull into the garage after a day or a month away, Stow always heaves a little sigh of relief. He is just so very happy to be home with his toys and his bed and his driveway and his yard. Hopefully, eventually, we will figure out how to make being away less stressful for him. Until then, I think we might just stick close to home.

Cucumber harvest after 4 days away.

That's probably better for the cucumbers anyway!

******

A week or so after we got back from our road trip, Sky and I spent the night in downtown Chicago. I made the last-minute decision to book a hotel room on that particular weekend after I realized one of my friends was playing in a local music festival that also headlined one of my favorite bands. Somehow I figured I could convince Sky to come watch live music as part of his special weekend away with me. (I was wrong, it turns out).

The day before our departure, we went to the Humane Society and got a new kitten because clearly, any changes in routine should definitely be accompanied by the introduction of a new family member (and clearly, I have not learned enough about how to parent kids on the autism spectrum). Sky worried that he would miss the most important moments in Taro's young life, so it took longer than expected to get away (and required me to calculate the approximate number of hours and days Taro would be in our lives based on average cat life expectancy in order to convince him to go at all). By the time we got on the train headed to downtown, it was already after noon.

On the way to our hotel.

Our hotel, it turns out, was about a block from the Japanese Consulate in an area we know well. Sky was most thrilled by the tall buildings. Then I took him to have some Ghirardelli chocolate and to the LEGO store, and he lost his mind. After wandering for a couple of hours, Sky insisted on going back to the hotel room so he could build the LEGO set he'd bought. Turns out cable television and early 2000s comedies are also mind-blowing because we spent the next two hours in the hotel room while he built his LEGO set and watched Paul Blart: Mall Cop. Despite my best efforts, I could not convince him to come with me to the music festival, and given that I'd let Pink do her thing on the farm, I knew I owed it to Sky to let this trip go at his pace.

Sometimes you just need to go look at LEGO.

Sky was gracious enough to agree to have dinner with a fellow ASD mom-blogger friend and her kids, and he even agreed to be patient while my friend and I quickly tried to catch up on the four years since we'd managed to have dinner last. I can't tell you how reassuring (and completely disconcerting) it is to hear someone describe the insanity in their own lives in practically identical terms to the way you describe your own. If you're reading this blog because you have a kid on the spectrum, reach out! Being able to talk to people who actually KNOW what this is like may just be the thing that keeps you sane.

Tall buildings as viewed from our hotel bathroom.

Sky had anxiety about walking back to the hotel after dinner and also about using a ride service, so my friend graciously agreed to drop us off at the hotel in her Uber. (God bless friends who accommodate random anxieties! I mean, really.) After another quick walk among the tall, familiar buildings, he settled in for a Harry Potter marathon. I fell asleep AND woke up to the sound of a Harry Potter movie. After breakfast, I'd hoped to get Sky to a museum, but when I asked him what he wanted to do, he said he wanted to do the exact same things we'd done the day before.

So, we did.

******

"It all ends in tears anyway."
"I had nothing to offer anybody but my confusion."
"We agreed to love each other madly."