bodega days

After the weekend with V comes a big exhale. We’ve lost our home therapy now that he is 22, which makes no sense – he doesn’t need it any less, if anything it’s more important as he continues into adulthood – but then, health insurance has long been a bane of our existence.

So we are now on our own, without any help facing whatever comes our way. There are mellow days and restless days and no way to predict which we will have. When V is mellow, which is rarer, he can sit at the table or out on the enclosed porch with his iPad or listening to music or just staring out the window. Those days are such a relief. I can read or listen to my favorite radio shows (like Wait Wait Don’t Tell Me) or clean the kitchen. We have a leisurely breakfast and go out to the supermarket and later for one long walk. We come back home and eat and relax. 

Much more common are the restless days.On restless days we have one or two walks where we drive to the lake and take a loop around it. Then we come home and soon he asks again for a walk. Since we don’t feel like getting back in the car and he refuses to take a longer walk in the neighborhood (there are a couple of parks nearby where we used to walk repeatedly but he now sadly won’t go to either) that means going around the block, which means stopping in at the bodega on the corner of our route.

He’s been going to this bodega since he was in elementary school and had a home aide who would take him there and he’d hand a quarter to the nice person – there was an older couple who ran the place and usually one of them was behind the counter – and work on saying hello and thank you. They smiled warmly and called him papi.  

Many years later the store is under new management and most times we enter there’s the same young man at the counter. V gets his small bag of chips or popcorn and we give him what is now two quarters. I smile at the man and he looks at me, stone-faced and surly.  He’s never once returned my smile.  I tried to dismiss his manner as shy or reticent, yet I’ve seen him smiling and joking with other customers.  

Yes we often are in the store several times in a restless afternoon and yes I know chips are not healthy and yes it would be better if V would listen to us and walk a different route or skip the store but you try getting a young man with severe autism and pathological demand avoidance (which is similar to ODD: oppositional defiance disorder) to alter his routine, or tell him he can’t go outside anymore. Just this past weekend he was pulling on my arm, not knowing his own strength, imploring me to go on one more walk. Yet I couldn’t bear the thought of going back in that store.

I don’t know why it bothers me so much. Well maybe I do. I’m too thin-skinned for this life, always have been. When V was younger, like during his prime playground-going days, the glaring and gawking were constant The other moms I knew with kids like V, those with special needs and behavior issues, had similar experiences but they shrugged it off. People can be assholes they’d say or something equally dismissive. But I never got there. I’d spent my whole adult life being cheerful and gracious and having most people respond in kind.  The world was a friendly place.

After V’s regression that all changed.  When he was really young people were generally tolerant and understanding.  He’ll catch up, boys are often slow to develop they’d say. They were wrong about V but I appreciated the sentiment. As he got older his complete lack of social skills or sense of appropriate behavior was cause for constant reprimands from strangers. He had trouble waiting his turn to use playground equipment; he’d get too close to other kids. He’d stand on chairs or try to climb over seats when we went out to eat. He’d fall apart when we had to stand in line at stores, he’d grab food and open packages before they were paid for. He required – and still does – constant monitoring.  It’s always been stressful and exhausting, all the more so for the “watch yer kid lady!” comments that were the frequent soundtrack to our days.

And so the unfriendly bodega man bothers me more than I wish he did. It’s this cumulative sense of not being welcomed in my community, of getting the message that we are an annoyance, at best to be tolerated.  We mostly limit our outings now to those that are familiar and friendly: the supermarket with its special needs baggers and cashiers who are usually understanding, the Mexican restaurant where the waitress is so lovely and patient, a place like Costco where the cavernous space seems to let in (well, as long as you have a membership  card) anyone, a melting pot of shoppers where V blends in to the crowd, the one park he will go to where I say hello and smile anytime I meet anyone’s gaze.

But a walk around the block involves the bodega, the place where we are considered a nuisance. It’s not as if we’re shoplifting, or V is being disruptive, he’s just a regular weekend presence, pleased to be in a store where he has the freedom to walk down the snack aisle and choose his cheese popcorn or whatever his salty crunchy snack of the moment is. I can’t change anyone, all I can do is model what I want to see in the world. And so I smile and say thank you every visit, not expecting anything in return but doing it all the same.