By Tracy M
We are on our way to get dinner. Bean has on a pair of extra-small girl’s leggings, an under-armor swim-shirt, and shearling boots. The leggings are almost indecently tight, but it helps him calm down, so I let it go. The shirt is meant for the pool, but the silky fabric and the smooth seams are also good for him, so I let that go too. The shearling boots are lined in sheep’s wool, and it solves the problem of seams in socks, which if you have a Spectrum kid, you know what I’m talking about. I let those go too, despite it being June.
With a spectrum kid, routine is golden. Familiarity is a safety net that cannot be overstated. Sometimes I think it would easier- not to mention more fair- to all of us if I were only Bean’s mother, or only Jeff and Abby’s mother. Because try as I might to balance everyone, the “typical” kids too often get shoved aside in the mad rush to put out the blazing inferno that is Bean.
So we are on our way to dinner. We have a cheap-o Mexican joint up the street that we frequent- it’s a hole in the wall, the make Bean exactly what he will eat, and they are nice. But Jeff has talked me into trying the place out by the golf course. It’s cheap too, but taking Bean somewhere new is always a dice roll. But Jeff is pleading, the sun is shining, and the new place has a patio that overlooks the fairway. He pleads to sit outside under the umbrellas, and I acquiesce.
I am not a rookie. I know this is highly risky, but I simply cannot always deny my other children because of what their brother might do. I take a deep breath, and we plunge onward. In the car, we talk about manners, about using our voices in public, about not honking or biting if something is frustrating, and keeping our “space bubble” around us. It’s really all I’ve got. There is no telling what he will or will not do.
When we arrive, the patio is empty, and the wind is picking up. The host doesn’t want to seat us out there, but Bean is alreay amped and myopic, fixating on the fluttering flags and umbrellas. We sit on the patio. Abby begins to cry because the wind is whipping her hair, but Bean is leaning on the railing looking out over the fairway with his arms flung wide, embracing the world. I am thankful we are the only ones out there. Abby begins to whine, and I look at Jeffrey- again, at 8, already the peacemaker. I nod towards the door, and tell him we should go inside.
Gathering our stuff, Jeff, Abby and I grab a window table, and leave Bean outside. This may seem insane to a parent of a typical kid, but trust me, I have learned things the hard way. This can go only two ways: I can force my will on him while he is still completely focused on the elements, and he will completely melt down, and we will all be forced to leave, with me probably wrenching my back and him honking, banging his head, and biting chunks out of my arm. Or… I can simply model what I want him to do, and I know, as his focus changes and the flags lose their fascinating grip on his mind, he will notice we have moved and eventually will tag along happily.
I know full well how this looks on the outside. I am so used to it now, it only bothers me tangentially. It looks like a wild kid who won’t listen to his mother, and a mother who lets her kid run wild. It couldn’t be further from the truth, but that is exactly how it looks.
Jeffrey and Abby munch on free chips while I watch Bean through the glass and he leans into the wind, eyes closed, a smile on his face. When he finally opens his eyes, he sees me watching him, and scowls. I wave to let him know he is fine, and he goes back to the railing. I have to let so much go, just to make life manageable. Finally whatever was holding his attentions ebbs, and he comes to the picture window and peers in at us. Making quick moves or demanding he join us is a mistake, so I smile, and then on his own, he opens the door and bounces into the restaurant, and plops into the seat next to me.
The problems start immediately. The tortilla chips have red and purple chips mixed in with the yellow ones. The salsa is in the wrong type of bowl. I have already ordered, but when the waiter brings his plate of french fries, they are curly instead of straight. Suddenly, nothing is right. At the other Mexican place, the waiter knows his name, and keeps a bottle of ketchup in the fridge just for Bean. This ketchup is warm. This waiter looks at him like he’s a snotty kid with attitude and jokes that, hey buddy, fries are fries. Yeah, dude, stop now. Please. Just stop. Everyone is holding their breath.
Bean starts to rock, and slides down the seat until he is crouched in the corner under the table, where he stays while the rest of us eat. We are just grateful he is quiet and not honking. We scarf our food, and I quickly pay the waiter and gather our things to leave. I manage to distract him enough to get him in the car by promising he can chose the route home. His sense of direction is uncanny, and he sends us home following the entire route his bus takes to school. This child cannot eat a french fry with the wrong shape, but can remember the bus route to pick up 12 kids.
This is life with autism. It colors everything we do. Every place we go, every decision we make- how Bean will cope is the main factor in our activities. There is a constant tension we all live with, day in and day out. I wonder why I would try something new- the odds are stacked that it will be a disaster. And yet, I am compelled, twisted and pulled in different directions. It’s a clumsy, messy, frustrating dance, this living with autism.
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