Wednesday, June 17, 2020

Children with disabilities were already socially distanced before this all started

The invites have been trickling in. Would we be game to go to a family's backyard party? Could Sabrina sleep overnight at a hotel for someone's birthday? What about a neighborhood movie night? No, no, no. Even if people are wearing masks and staying socially distant at gatherings, we are still avoiding them. This is one of the great paradoxes of the pandemic: We miss being around people. We fear bearing around people.

Sabrina and Dave have done a couple of socially distant one-on-one hangouts with friends but Max, Ben and I have mainly had each others' company these past few months, other than occasional chat with neighbors from a distance. We just started visiting grandparents last weekend.

For Max, school was his social life—the school days and the occasional after-school or evening event. Ditto for the summer camp he's gone to for the last several years, which isn't taking place this summer; he'll be doing virtual ESY (Extended School Year). "Next year?" Max asked when I told him camp was called off, because that's how positive he is.

Max has been doing really well with virtual schooling and connecting with his awesome teacher and classmates. He hasn't missed hangouts with friends at the mall or doing sleepovers because that was never part of his life. As social of a person as Max is, he has basically experienced ongoing social distancing throughout his 17 years. He does not have a circle of friends or anyone he regularly hangs out with outside of school or in our neighborhood. This is not uncommon with other children and teens I know who have intellectual disabilities. 

There are times when I've found this to be really sad. Mostly, it's a reality I've accepted since Max is content with his existence. I'd say that it's made the forced social distancing of the pandemic somewhat easier on him so far; he wasn't going to pool parties with friends, anyway, although missing camp is a big bummer.

Max has developed some good coping skills for the days he'll be spending at home. His fantasy life about moving to Los Angeles remains vibrant. He now goes by Pacific Standard Time; if he tells me he's going to sleep at 6:00, it means 9:00. He likes to answer homework questions with "si" or "no"—he learned some Spanish words while on a trip to the Dominican Republic, and I think it's a reminder to him of the good times our family's had on vacation.

Max has also been taking a lot of walks around our neighborhood. Occasionally, I'm allowed to join and when I do, it's like being in the company of a celebrity—every neighbor we pass by says "Hi, Max!" He waves and walks on. Dave's mom and father-in-law stopped by one evening last week and were amazed by Max's popularity.

Last night, Max's homework was a fill-in-the-blank summer story a la Mad Libs. The instructions said "Fill in the story with names of your summer friends." Max had just one to write.

The two of them usually love to roam around New York City or go on eating adventures. These days, they cruise through drive-ins and chill in parks. This summer, more than ever, Dave is going to be Max's BFF. I'd say they're both lucky. 

1 comment:

  1. Maybe a drive in movie or concert is in your future!


Thanks for sharing!

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