The Short Bus Diaries » Confessions About Life With an Autistic Son

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The Stories We Tell Ourselves

So if I told you that we went to an outdoor pool, hit some water slides and a lazy river, and followed it up with a dinner at Ruby Tuesdays and a family movie, you’d probably categorize that as a pretty good day, right?

In reality, the day went more like this:

We waited as long as we could for the cheaper evening entrance fee at the pool, but seven minutes before the price dropped, my son was knocking over everything on the counter. Despite hoping that the teenage employee staring at us would take pity and pretend that it was actually seven minutes later for the benefit of our clearly anxious, autistic son, he didn’t. We paid the full price and went in. Once in, we were really excited about all of the water slides spread out before us, but quickly learned that we would not be able to wait in the water to catch our son coming down, due to strict pool regulations. No breaks for special needs families. So I walked him up to the slide and then ran (yes, I was allowed to run alongside the pool, but not wait calmly in the water for my son to slide down into the safety of his parent’s arms) into the pool to be “nearby” when he landed. Later on, my son’s fabric swim diaper gave out and disappeared somewhere in the pool; we prayed that he would have no accidents. At some point, even though one parent was completely devoted to managing him flop and scream happily in the three foot deep kids’ section, the lifeguards demanded that we put an approved, gigantic life vest on him, because his floatie was not good enough (liability fears about a kid with special needs, I’m guessing). And the next time we tried to send him down a water slide, they wouldn’t let him go because kids aren’t allowed to wear life vests on the slide. WTF? So I can’t catch him to keep him from drowning, and I can’t put on one of your required vests so that he doesn’t sink at the end of the ride down?

Once we got to the restaurant, there were three emergencies related to having swallowed too much pool water, and we eventually walked my son through the restaurant in a t-shirt and underwear because we ran out of shorts. My husband waited in the men’s room, while I ran out to the car to find supplies, and my five year old daughter sat alone at the table. The waitstaff were extremely polite, and said nothing about any of this. We got our check as soon as possible and drove as quickly as we could to the drive-in movie theater. We were already exhausted.

We had planned on the drive-in because we could give my son his nighttime sleep medication and then have him pass out in the car, where we would all sit to watch the movie — this was pretty much (or so we thought) the only way we thought we could all go to the movies together. Unfortunately, we got there too late; sold out. My daughter was pretty heartbroken, as we had been talking all day about ending one of our last summer days with a double feature that we could watch outdoors. We made a last minute call to hit the gas and drive to the nearby “brew and view” for a 9pm showing of Shaun the Sheep.

We stood in front of the ticket booth, my ~60 pound son passed out on my shoulders, as my husband asked whether we could a) take a sleeping child in, and b) pay for only the three of us, since the fourth was not even aware of anything going on around him. Instead of acknowledging our tricky and exceptional situation (and perhaps our desperation to do something normal on a Saturday night), they told us that he would have to sleep on our laps in order to avoid paying for a ticket for him.

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My husband carrying my son (back in his damp bathing suit, because we thought the underwear and t-shirt bit might make us stand out even more than we already did)

We did as we were told. Even though only four other people occupied the entire theater besides us, we awkwardly draped our almost eight year old son across our laps, put his head on my purse, and drank our sodas over him, feeling like asshole parents. Our daughter, fortunately, was blissfully unaware. She got to see a move with her whole family, so this was a great day for her.

I sat in the dark theater, contemplating the strangeness of this victory. Yes, we had a jam-packed summer day, a day that would have been a lot for the average family. And we had gotten through it, damnit. We did it. This was a good thing, right?

But the whole thing still kind of felt like jamming a fat book into an already packed bookcase. We could see the slot — it was sooooo close. We were prepared…mostly. We had packed back-up clothing, medication, and willpower. But it took a lot of pushing and squeezing to slide that book into place.

With my son lying across our laps and my daughter giggling at the movie, I tried to spin it that way that all families like ours do. We declare our special, but small victories on Facebook, we laugh at the alternate versions of holidays we celebrate, compared to the Rockwellian versions our peers claim to have had, and we laugh off the crazy accommodations we make (and hope others will make on our behalf) to get through each day. And this day, despite all of the non-traditional elements, did fit into the definition of a traditional weekend day spent by an average middle class American family. By golly, this was enough, wasn’t it?

I suppose. But it also felt a little like a lie. I mean, it’s a good lie that we could tell ourselves. “We can be normal. We can totally do what they do.” But underneath it all, I still recognize it for what it is: an Olympics-worthy hurdle through all obstacles, with the reward of only a laugh and a pat on the back at the end of it, as well as more dirty laundry and the knowledge that we have to get up and do it all again the next day.

But really, what choice do we have? For families like ours, we have to really, truly, actively, willfully choose to be happy. It doesn’t come to most of us easily, that’s for sure. We must seek it out and declare it good enough to fit the definition of “happy”, when we strike it. And that’s just how it has to be, I guess.

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