“Hi, Mom! One question.”
When Ian calls from his group home with one question, it usually involves money. Two days ago, when he asked me to buy him a Star Wars DVD, I said “sure.” Even though I don’t want to contribute to the abuse of Amazon warehouse workers, I do want to take care of my son. And these days, there aren’t many ways to do that.
Years ago, we put Ian’s well-being into the hands of others. He’s been living in his current group home for over a decade, but my husband and I have always been active participants in Ian’s adult life. We see him weekly, taking him shopping for new clothes, to the movies, out to restaurants, and occasionally on vacations. Ian loves eating at restaurants, some of the only places that he gets to feel like a regular guy—well, an almost regular guy.
Depending on the waitress or waiter—whether someone new or someone we’ve become acquainted with over the years—Ian may or may not be treated like the rest of us. The good and the bad of having Down syndrome is being immediately recognized as a person with special needs. He’s perfectly capable of ordering his own food, even being sure everything is gluten-free since he has celiac disease, but occasionally someone will look to me for interpretation when Ian’s garbled speech makes him difficult to understand.
We can’t go with him to the movies or a restaurant since Covid-19 upended our lives. We can’t even go into his house.
“What is it, Ian?” I ask when Ian calls with one question.
“I need money.”
“Ian, we’ve been through this. Kathy has money for you.” Kathy is his house manager, who usually takes care of these things.
“No wait! Listen to me.”
“Is this about coffee?” Yesterday, Ian wanted money so he could go out and buy a cup of coffee.
“No. Not coffee.”
“Ian, you just have to talk to staff.”
“No. Wait! Please! Just listen to me!”
“I’m listening, but if this is about coffee, the answer is No!
“Not about coffee. Mom! Mom! Just listen.”
“Okay, Ian, I’m listening.
“No coffee. Tea.”
I start laughing. “No, Ian, no tea.”
“Talk to Tammy.”
“No point, Ian. I bet she already said no.”
“Just talk to her. Please.” We go back and forth a few times until I realize that I’m never going to win this one and I agree to talk to Tammy.
“Hi, Tammy. Ian insisted I talk to you.” I start laughing again. “Just so you know, the answer is No!”
“Knew I could count on you,” she says. “He just wants to go out and do something, but we don’t have the staff.”
“I know. I am so sorry. Ian must be driving you nuts and he’s only one of the guys. I just want you to know, Ron and I are both so grateful for all that you’re doing!”
“I know you are. Kathy posted the note you sent so we all could read it. And you’re welcome. It helps to hear it.”
When we get off the phone, she’s the one who has to negotiate this with Ian. It won’t be easy unless he flips a switch and gets back into a reasonable mode.
Ian knows that he can’t go into a store right now. He can’t buy a coffee or a tea. He can’t go to a restaurant. He can’t help with the grocery shopping. He can’t go to his day program. He can’t go to the movies. He can’t even go to any of his many doctor’s appointments. “Virus,” Ian will say if someone asks him why he can’t do these things, but some days he just doesn’t care if he’s safe. He wants what he wants.
I smile when I think of Ian’s request for tea rather than coffee. He’s always working the angle. But underneath my smile is a grief that threatens to engulf me. Yesterday, I made the mistake of looking at the latest Covid-19 news in Massachusetts, and there it was: an article about people with disabilities living in group homes. It’s no surprise: they are at grave risk. Low-wage staff members are coming in and out. Can they even afford not to come to work if they are sick? I don’t know, but I have my doubts. Plus, Ian has multiple complicating medical issues that put him in the high-risk category.
Later, when my husband and I are taking a walk in the woods in our rural community, I ask the question aloud that I’ve been thinking: “Do you think we should bring Ian home?” I start to cry when I ask the question because I don’t really think we can bring him home. The risk is too great. We’re in that high-risk elderly group and he may already have been exposed. Plus, our home is no longer Ian’s home. His home is 16 George Street. “My town,” he’ll still occasionally remind us when we’re driving down Main Street in his hometown.
I know Ron’s answer before I even ask the question. I just need to hear it aloud. “No,” he says. Ian has his home. He has his room, filled with wrestling posters on the wall, stacks of DVDs and games. He has housemates and caretaker staff. I know his life is there, but there’s that niggling voice that makes me wonder if I might be shirking my responsibilities as his mother. It never ends: that feeling that I’m just not good enough as a mother. Now, at least I can try to soothe myself when that nasty voice creeps back inside me. Then I think about what I can do.
“Hey, Ian. No tea today, but that DVD should be coming soon. Maybe today. Will you send me a text when you get it?”
“Sure, Mom. Hey, Mom. I be flexible. Another time.”
“Right! Another time.”
Renée Schultz is an author and a marriage and family therapist.