Two Good Days

When it comes to parenting a child on the autism spectrum, there's an internal question that pops up again and again.

How much can Ethan handle? How much can we handle?

Sometimes that relates to therapy. His providers technically want to bump him up to about 15 hours a week, although they haven't really pushed it (he's at close to 10 now). I wonder how much he can handle without being pushed too much, and how much our family can handle before we reach a tipping point where our lives revolve around autism and autism alone. Other times it's about play time -- how much I can handle spending one-on-one with Ethan, how much pushing he needs vs. downtime, how far I can spread myself thin before I have not enough left for Dan, Anna, friends, my spiritual life, and just time for me. These are tough questions. There aren't always easy answers.

The other big "How much can he handle" issue sprouts up around outings, vacations, visits, exursions. I find myself wanting to push him, wanting to take the risk, but sometimes fearing if there's a meltdown, not only will he be upset but so will everyone else...upset and discouraged. And often, exhausted.

The museum in Middletown, Kid City, is a good example. It's a great place. We've taken Anna there in the past. I've had friends set up dates to go together with other friends and their kids. When I think about going, the first thing that come to mind is: it's a big place that doesn't allow strollers. Ethan is prone to have a mind of his own in these places and has trouble just staying with you and going where you want to go. There are times I wonder if we should get one of those leashes...the cute ones they have now that look like a little backpack on the child. I never much cared for them, but now I can understand the need, in certain situations. So unless it's me and Dan taking the kids, it's really hard to go. If I went with friends, I'd have not that much of an opportunity to actually spend any time with them. And if I took the kids alone, I'd have to leave Anna to practically fend for herself while I chased Ethan around. But again, those are assumptions. And assumptions aren't always correct, of course. Sometimes you just have to test the waters.

Last Saturday I knew Dan was going to be working all day and that we had free tickets to a traveling petting zoo-type event up on the Big E fairgrounds. I waffled back and forth about taking them but decided since Ethan would be in the stroller things might turn out fine. When we walked in, I wasn't so sure. Sometimes I try to stop and see the world through Ethan's eyes, or even more so, his ears. The entire Better Living Center was awash with blinking lights from carnvival rides, the sounds and screeches of those rides, the echoes of kids shouting, and various animals bellowing. I was a little overwhelmed, never mind Ethan. But we kept going, and of course Anna was bouncing from one thing to another, unphased. Most of the time we had to raise our voices to hear ourselves.

At first, it was difficult. I felt sad for my little guy. He'd look at an animal but then be distracted by the spinning Merry Go Round, or crazy lights on the cotton candy stand. It was as if everywhere, sights and sounds were calling out to him, "Over here!" "Over here!" and he either didn't know which way to turn, or he'd get overwhelmed and just focus, staring at one.

But I noticed something, and I've noticed it before. If I watch carefully, I can almost see Ethan take some time to attempt to tune things out. It's what most of us do naturally when we go somewhere like this...some of us more easily than others, but the typical person most certainly does not have to work quite so hard. After awhile, Ethan could focus on the animals. Was he laughing, calling out, running to each one and trying to pet them? Not exactly. I could tell he was fighting the distraction and didn't quite like all of the noise. I'd call it more of a quiet delight. He especially liked feeding the animals (with my help -- he didn't quite get the concept of holding his hand out flat). I could see the joy in his eyes, and the smile.

We decided to go on the train ride. One of his therapists had suggested singing the little songs we've made up that Ethan likes about different objects or animals. Since I thought he might be nervous, I started singing quietly in his ear, "The train goes on the tracks, the train goes on the tracks, hi-ho the dairy-o the train goes on the tracks." We do this about a lot of things. It started with a Baby Einstein DVD and went from there ("cars go on the road," "cows give us milk," "rain falls from the clouds"). Then we squeezed ourselves into a tiny little seat (Anna rushed up front). Ethan didn't want to get in at first; I thought a disaster would ensue. But then the train started, rattling and rumbling. It was LOUD. I made a few whistle noises, we looked down at the tracks, and Ethan got it. A big grin spread across his face. There were flashing, irritating lights everywhere, even on this lever in our train seat, the train was crazy loud (so loud they had to stop it and let another kid off who was crying), but Ethan did it and enjoyed the ride. Now I was the one grinning, at this small victory. Or maybe not so small.

The next day we were off for an overnight to Lake George, Six Flags Great Escape Lodge, which has an indoor waterpark. This has become a tradition for us; sort of our way cheap alternative to Disney in the late winter. Last year we tried Coco Keyes, a nearby and very small park, and it was a disaster! Ethan (and Anna) were terrified of the big bucket that dropped water right down on the kiddie play area. Neither of them played much. After last year I wondered if we dared try again. We'd been to the Lake George park as well as Great Wolf Lodge out in PA...I remembered this particular one to be very loud and echo-y inside. And of course the bucket was there, too, albeit separated from the little ones. So we planned it anyway, and I kind of steeled myself for whatever might happen.

We walked in, and it was mobbed. Through the doors, and the noise hit us. Ethan's eyes went right to the bucket, and started bugging out of his head. I held him for a bit, speaking softly, letting him take it all in, showing him the water wasn't going to attack him. Then we all went and got changed, and...

JOY!!! The kids loved it!! I knew Anna would, but was so pleased she overcame her fear of dark tunnels and went on the "grown up" slide with dad. Her eyes were huge...I could see the pride on her face. I started with Ethan in the kiddie area, which just has a few little fountains bubbling up (he's still not a huge fan of those), a few swings, and some little slides. I thought we'd stick to the really little slide because I wasn't sure how Ethan would do on the bigger one -- but when I went over with Anna to the bigger kid area with the infamous bucket, I looked down from up high and saw Dan bringing Ethan over to the bigger slide. Beyond that, when I took Anna on the lazy river ride, we discovered Dan and Ethan over at the the big bucket zone.

"I wasn't going to bring him over here -- I didn't want to traumatize him," I kind of yelled to Dan over the noise.

"He's fine," Dan assured me, and he was right. The bucket dumped the water and Ethan stopped, looked momentarily scared, and then continued with what he was doing -- going down an even bigger slide, one I thought he was too little to manage. Once he realized he liked that, he kept doing it. Would I have loved for him explore a little bit more, and maybe not have been quite so repetitive? Sure. But the kid was in a huge, echoing, splashing, screaming, water-filled room, conquering his past fears, and expressing sheer delight. As I watched him, I kept thinking of what someone (or maybe even more than one person) once told me: Ethan is Ethan. Ethan is not autism; he's not less than anyone else just because he may be different.

I didn't end up having much time to myself while we were there. In fact, I didn't even make it onto a water slide. That would have annoyed me in the past, but this time around, I was basking in my own joy -- of all of us facing different fears, and finding them unfounded.