I enter my daughter Jessica’s house. As I walk down the narrow hall, I smile and roll my eyes at the wall, which is lined with dings from Jessica coaxing her wheelchair into three-point turns. I am almost to the dining room when I hear the tell-tale screams and claps. Jessica knows I am here. And so does everyone else, by the way! Maybe even the neighbors down the street. Yes, that’s the volume of her screaming greetings. Jessica’s unique way of saying, “Hi, Mom, I’m so happy to see you!”
Did Anyone Say, “It’s Dinner Time?”
It’s dinner time, and Jess, along with her four housemates, are at the family table. I arrive to help Jess eat her meal. Jessica has a rare chromosomal deletion and needs assistance with all daily living skills. But there are many tasks she can participate in, “when she is in the mood.” One of them is holding a utensil to eat.
Moving her wheelchair to play the piano or visit a friend or staff in the kitchen is another one of Jessica’s favorite activities. But don’t ask her to move the chair; you will get a glare, which means, “No!” Jessica likes control, just like her mom (so I have heard 😉)
Jessica does not chew, so each meal must be minced, moistened, and ground into pieces smaller than ¼ inch—like the consistency of well-mixed sloppy joe. Tonight’s entrée is turkey sausage with spaghetti squash. Although my self-imposed vegetarian rules won’t let me taste it, it sure does smell good!
All Together Now, “🎼Downtown!🎶”
I sit at the table and talk with Jessica’s housemates about their day. Everyone has participated in an activity outside the house except one woman, K, almost 60 years old and retired. Both she and Jessica are nonverbal, so they actively listen while their friends chat. Jessica and her mate, K, don’t use spoken words. But they find their way into the conversation through gestures, eye contact, hand claps, and laughter. Everyone is contributing meaningfully and to the best of their ability.
Later in the conversation, many of the women mention going “downtown” to their day program. As soon as I hear the word, I sing the chorus of the old song from the ’60s. One of the women, T, looks at me and, in her slow, articulate speech, says, “Downtown” by Petula Clark.
ASSUME (Ass of U and ME)
Wow! T is in her early 40s. How would she know that song and the artist? And then I ask myself, why wouldn’t she know that? Why do I fall into the trap of ASSumtions. Presuming what other people may or may not know. This often happens with our daughter Jessica. Because she is unable to speak, people think that she doesn’t understand. Jessica constantly informs us of her knowledge, wit, and understanding. A side-eye glance, an enthusiastic clap, a laugh at a joke, a reach for a hug, and a kiss on the cheek are just some of her ways of saying, “I get it!”
I search for the song on my phone. T and I sing the verses, and the other women, who are able, add to the chorus, ‘Downtown!’ Voices raised, eyes all on each other – the beautiful harmony of joy.
“When you’ve got worries, all the noise and the hurry
Seems to help, I know, downtown.”
My day had been stressful, with too many activities crammed into one date. The best remedy was sitting with my daughter and friends; my worries faded into the abyss and were replaced with delight. Watching Jess and her housemates enjoy our shared musical moment reminds me to be present and grateful.
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For an inspiring stories about Raising a Child with a Rare Chromosome Deletion, check out 3-time award-winning memoir, Raising Jess: A Story of Hope!
Discover more from Vickie Rubin: Special Educator, Advocate, & Mom
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