Trying To Feel The Meds
“Can I show you my sons?” Maria asks, pulling out her phone. “They love music.”
Maria and I have met several times over the past few months. Each time, we wade through the flood of government paperwork that arrives in her mailbox, about her twins—8 year old boys with autism. Santiago and Aaron have just been approved for the Medicaid Waiver (a torturous process started nearly a year ago with my co-worker—before I even came to Vista), which will allow them each to receive around $16,000 yearly in extra therapies and equipment. It can even provide caretakers for the boys when Maria needs to run errands, or when she just. Needs. A break.
Maria’s son appears on the screen, a solid, smiling, bespectacled boy, vigorously plucking the banjo strings of a friendly music-maker in the park. “That’s enough—you should dance!” Maria’s voice says patiently. He dances. He enjoys it. One of the extra services Maria dreams of for her boys is Music Therapy.
Maria’s daughter, Crystal, curled up in the extra chair, carefully wraps and unwraps Kleenex around a battery-powered tea-light candle. I think of my own preschooler, who ricochets around rooms like a rubber band on a sugar high, and comment about how she is the best-behaved 4 year old I have ever met. Crystal beams, and Maria smiles, “She’s used to meetings.” Of course, I realize, this child must spend half her life meeting with doctors, social workers, government employees, and the like.
Maria’s older daughter, America, is watching the boys this morning during our meeting. She says, “I never want any of my kids to feel left out, or feel like I love the boys more than my daughters. I say to them, ‘Girls, I love you all equally, but Santi and Aaron need a lot of attention. They need all our help.’ I’ve made it a team effort to take care of them.” Genius parenting strategy, I think. I should take notes.
She glows with pride as she describes how much the twins have learned in the last couple of years. One of them grabbed a kitchen knife once, not understanding the danger, and stabbed Maria in the ribs. “It was just the tip,” she assures me. She used to spend all day running after them, teaching them as they went, but the work has paid off and now they understand that soap is not something to eat, and knives are not toys.
Again, I think of my own children. It can be exhausting and frustrating enough to chase after toddlers, but 6, 7, 8 year old kids? Maria never describes it this way. Maybe she was born with all that patience and love, and maybe it was forged through the necessity of caring for her children.
Maria always arrives calm, papers organized in a bright pink and purple folder, hair always carefully braided to frame her face. I have infinite respect for this woman. Not only does she have all the regular duties of a work-at-home mom, two of her four children have special needs. That comes with another full-time job of seeking support for them. (“I am not eternal,” she notes. “I want them to be independent.”) Add to that the fact that the key-holders to services in this country deal mostly in English, while she speaks only Spanish, and you have a tenacious super-woman.
If it weren’t for the language barrier, maybe she wouldn’t need my help at all. Selfishly, I’m glad she does. I always enjoy our visits. I always learn from her.
As we wrap up our meeting, she says, “I’ve been meaning to ask you, should I use tú or usted with you? We use usted with older people as a sign of respect, and sometimes you look so young to me.” I will take that as a compliment.
“Don’t get me wrong, I have the same amount of respect for everybody.” She continues, “But usted also makes a separation. I have older friends who are women who always say, ‘Usted makes me feel old. Don’t set me apart—use tú.’ So…what should I use with you?”
I don’t know if this is a “moment” for her, but to me it seems somehow sacred. She has shared so much about her children over the last months, and now she is inviting me into her group of friends, including me in her circle of tú. “Yes,” I agree enthusiastically, “Between us, it will be tú!”
The Medicaid Waiver program now provides two therapists for Santi and Aaron. The boys adore the therapists who meet with the boys in their home every week for behavioral and music therapies.