Let the pizza lead the way: adapting to circumstances3
June 23, 2020 by whirlyjoy
Stay home stay safe in a skinny townhouse is an exercise in mental gymnastics and physical navigation, with four full-sized people and one 8-lb dog choreographing their days in spaces that are almost entirely shared. Luckily two of us are teenagers and therefore keep vampiric hours. Mimi floats out, ghostly with morning sleep, to bring the Wonderdog to the nearest corner of parking strip lawn just up the street a ways; I watch her from the third-floor balcony with my coffee in hand. It is 8 AM, perhaps, and I will not see her again for another five or six hours as she continues her night.
I am nestled in a blanket, letting the chill air and twittering birdsong that used to be drowned out by traffic from 15th Avenue, slowly wake me in time for work. The Dragon Lover is still asleep just the other side of the sliding glass door. He’ll be up by the time I log in, because my workspace is slotted in next to our bed and we’re grateful my job can be done from here.
If I spill coffee on myself I will change clothes before I log in. I’ll probably wash my face although sometimes I can’t remember if I’ve done that or not by the time 9 AM rolls around.
The blurred background effect in my workplace’s teleconferencing platform is a blessing; I think the time the DL walked briefly into camera range dripping from his shower, that no one was able to see.
Aida lives across town in what’s known in our state as “supported living.” In her case, this means a single-family home that she shares with three other residents. There is 24-hour staffing at a fairly high ratio, which gives her a quality of life that would be impossible here at home, where we were reduced to the barest survival mode by the time we made the decision to move her out.
She’s dealing pretty well with the restrictions during COVID, which is a testament to the agency that houses her and the staff who provide her care. This time of quarantine is difficult for people with severe autism, as I have recently described elsewhere.
When Aida first left our home, six years ago, I set her up with FaceTime on her iPad. I wanted her to know she could reach me any time she needed me. I pictured video calls – brief, to be sure, given her attention span and communication level – but still, a visual connection for her in her silent world. This didn’t go over so well; she recognized immediately that, if Mom was inside her iPad on the little screen, it meant that Mom was NOT about to walk through the front door with McDonald’s takeout or, even better, a plan to take her somewhere in Mom’s Car. She would flick the iPad off the couch or table when I appeared, and retreat to her room.
Thankfully, Aida continues to learn new skills, given enough time. And six years has been long enough to learn FaceTime. Our in-person visits have been very restricted over the past few months, due to the county & state coronavirus response, but our video chats have been phenomenal. She gets playful, moving her eye right up to the camera in imitation of the DL’s game with her. (Imitation! Another skill acquired slowly and only making its first appearance this year!) She watches me carefully when I sign about plans for our next outing. She refuses to echo back “drive-thru,” insisting that an actual restaurant would better suit her, and looks thoughtful (with what thoughts?) when I tell her those are still closed.
Adapting to change is crucial these days, and not, you know, a particular strength in a person with autism. On the other hand, “This might be a little bit easier for Aida than for the rest of us,” Mimi suggested, “because she’s used to dealing with an arbitrary and inexplicable world.”
I’m excited about restaurants reopening in our county this week, and Aida will be too… but getting her there still holds some challenges. I texted her supported living manager this week:
I’m curious how much experience Aida has with wearing a mask so far? We’d like to consider taking her to her favorite pizza restaurant.
His reply came quickly: She doesn’t like wearing it.
“Shocker” Mimi commented, reading over my shoulder, remembering no doubt the years of struggling to keep swimsuits on her sister in public pools. But I have high hope Aida will adapt. Because at age 21 she is finally enjoying games of imitation. Because sometimes these days she calls me from her iPad in the middle of the night from under her covers, and I see her sweet face grinning out at me, bathed in only the glow of the camera. And most of all, because the pizza demands it.
I always enjoy your blog! My son is in supported living as well, and in a home with only one other housemate. I went 3 months without being able to see him (Skype helps). Now I am back to seeing him every Saturday, Now for another day to be added and I will be happier.
LikeLiked by 1 person
Yes! I see her every two weeks right now (alternate weekends with my parents). It’ll be nice when it’s more often.
Amazing and wonder-filled. Thank you for a very welcome distraction! OXOX C
LikeLiked by 1 person