OK

Week 2

OK is derived from oll korrect in 1939, when there was a trend for playful abbreviations with intentional misspellings: k.g. (know go) for no go, and o.w. (oll write) for all right. These terms were a precursor to our current online slang of lol and omg. OK was the only one that stuck, becoming part of the vernacular.

I find this brief history lesson fascinating; the person for whom it is intended, not so much. As millions of parents and children adjust to online learning, hundreds of thousands are like us, with children with developmental or learning disabilities for whom it is a struggle to participate. V is capable of learning when he has the necessary supports: one-to-one aides and therapists to help him stay regulated and on task. He doesn’t understand why he is home for so long without the structure he needs and the school personnel and classmates that provide a nurturing and stimulating environment in which to gain skills.

It’s hard to be a parent, teacher and aide all at once, as I’ve learned over the years. I feel like a permanent substitute teacher, at least the less effective ones who students ignore or defy. Trying to get V to sit with the copious lessons we’ve printed out in the past two weeks – we’ve burned through an extra large printing cartridge – is a real struggle.

He responds much better to the familiar home therapists who had been coming in for a few hours most days, helping him to do some class work and other activities. But earlier this week we received word from their agency that they were being furloughed and not able to continue house visits for the foreseeable future. It’s a scenario being played out throughout the country as a concern for workers’ health conflicts with individuals like V’s need for their help. I understand that their well being comes first, although I worry about how we will all get by without steady wages, even with the small stimulus checks we’ll be getting soon.

I’ve had encouraging conversations with school staff: his OT suggests 15-minute-long schoolwork sessions throughout the day and focusing on independent living skills and not to be so hard on myself that we don’t do more, or that our most successful activity is going for walks in the park. V’s lead teacher says much the same: We’re doing great and hang in there. Yet I feel so ineffectual as I eke out a few minutes here and there of educational content. Yesterday we watched videos related to job sampling he’s done( landscape maintenance/groundskeeper, recycling, food services) and music lessons about Bach and the Beatles. We cut out pictures from the supermarket flyers of items we would like to have if they are in stock. I’m not sure V gets much out of any of this but I’m aiming for continuity.

A few days ago he eloped (common for people with autism) which was very scary. He was in the backyard on his own for a few minutes while I was inside cleaning the kitchen (where the back door is) checking on him regularly. But it turns out he figured out how to open the latch we thought was so secure and ran off in the few minutes he was out of sight.

Fortunately we guessed correctly that he went to the bodega, the only store we have in walking distance, where he regularly stops to buy a small bag of chips on our frequent walks to the nearby park.

In the years that it has been part of his community living skills, the chips have gone from 25 to 50 cents and the store has changed name and ownership but remains an important resource for the neighborhood, well stocked and reasonably priced in items for its largely Latino immigrant clientele: plantains, mangoes, avocados, and tortillas, in addition to basics like eggs, cheese and bread. I don’t sweat the small stuff of eating chips as V has always had a healthy diet with lots of fresh fruit and vegetables, and the contents in his bag are overshadowed by the skills maintained by going to a store, picking a snack and paying for it, with a brief friendly exchange with the familiar cashiers.

In the time it takes to find him and bring him home I miss out on a webinar on stress reduction, which I could have used all the more to deal with the anxiety of his escape.

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I keep telling myself it’s all OK, even though I’m frustrated and fearful. We have enough to eat and a yard and the ability to go for walks and be outside. I’ve had a few nice zoom calls with friends and family. I made a great minestrone from frozen and canned vegetables and beans. Yet I’m overwhelmed and anxious and in between the walks, meditation, music and other things keeping me grounded my mind races ahead to a future filled with more regression and lost skills for V, on how dramatically that could impact the family and his future.

For myself, with freelance work on hold, I’d love to finish some of the many incomplete essays I’ve started, to chronicle more of our strange life right now, to cultivate some sense of calm and carve out solitary time and space that fosters creativity, a challenge in this demanding and unpredictable time.

It’s OK, I repeat. Not great yet not tragic, some middle ground that’s o.w. and o.k. And OK is good enough for now.