A Life That's Anything But Typical: Maya Torres
Even cerebral palsy can't dampen the spirits of Maya Torres. Follow the links below to learn more about this amazing kid.
|Amazing Kids Winter 2009|
|Rehabilitation care video|
|Maya's WTAE-TV Vignette|
|Maya's photo gallery|
Maya was born with cerebral palsy. But Maya’s mom, Abby Torres, remembers that the diagnosis came slowly: “At first we thought that, because Maya was premature, she just needed to catch up developmentally, but when she was 11 months and still not rolling over or sitting up, it was clear that something wasn’t what it should be.”
Surgery was performed to help drain excess fluid from Maya’s brain—but her developmental status still didn’t change. “That’s when we started to hear about cerebral palsy,” says Abby. “And it was kind of a shock. You have to take a big breath. But you get past that quickly and you just want to make sure your child has whatever she needs.”
Other medical procedures—including additional brain and eye surgery—helped set the stage for progress. And multiple therapies were started at home through Pennsylvania’s Early Intervention program. Meanwhile, Maya’s pediatrician suggested that the family also contact The Children’s Institute—and soon Maya and her family began a program of weekly speech/ language, occupational and physical therapies.
"Next steps," not calendars
The therapies are structured around “next step” goals. Mary Jo Smith, Maya’s occupational therapist, explains, “We don’t look at timeframes; that’s not appropriate for children with cerebral palsy or a number of other issues. We look at what skills the child has now, and at developmental progression—the natural ‘next step.’ Then we work to help the child take that step.”
One “next step” for Maya involves communication. Speech/Language Pathologist Patty Villalta says, “Maya has nonverbal ways of communicating—smiles, directing her gaze and a couple of signs—but we think she has more to tell us, so we’re using alternative ways to help that happen.”
A Step-by-Step Communicator is one alternative. Basically, the therapist records responses to dialogue, and the child pushes a switch to “say” those responses. For instance, when Patty reads Maya the classic “Brown bear, brown bear, what do you see?,” Maya presses the switch to respond with the next line: “I see a redbird looking at me.” Depending on what Patty has planned and recorded, Maya can participate in songs, or even say “More bubbles!” during bubble-blowing sessions — Maya loves bubbles.
Says Patty, “It’s a way for Maya to learn the turn-taking we do when we’re communicating and to become used to communication devices. This is a precursor to more sophisticated communication and devices.”
Motor control and magic wands
In occupational therapy, Maya is working on motor control and object placement and manipulation—and, again, the activities are fun and motivating. One example: purposeful use of a crayon. Mary Jo Smith says, “Maya’s able to scribble, and we’re practicing imitation—for instance, if I draw a circle or a horizontal line, we see if Maya can do that, too.”
Coordinating Maya’s two hands is a goal. An activity Maya loves involves using one hand to control a magnetic “magic wand” that picks up metal-rimmed bingo chips, and then using the other hand to pull the chips off the wand. There’s also time on the “horsey swing”—a bolster suspended from the ceiling. Maya and Mary Jo straddle the swing, and its motion requires that Maya work to keep her trunk upright. “With young children, there’s often overlap between occupational and physical therapy,” says Mary Jo. “Maya can’t use her hands for anything else if she has to lean on them to support her trunk, so we all work to strengthen her core muscles.”
Ilana Osten is Maya’s physical therapist, and she and Maya are focusing on a number of things in addition to trunk strength. She says that Maya is making good progress on goals like rolling from her back to her stomach, sitting independently and weight-shifting as she stands.
Ilana also works with Maya on using adaptive devices— for instance, standers that help support Maya and prevent fatigue while she’s upright, and a gait trainer that is basically a small walker with a seat; it encourages Maya to propel herself with her legs. Abby Torres says, “The Children’s Institute always has equipment that Maya can try out to see if it’s right for her. It’s great, because that way we can know whether it will work for her before we go through the long process of obtaining it ourselves.” (Much of that equipment is purchased with donated funds—either general contributions to The Children’s Institute or gifts made in response to the “Amazing Wish List” published in each issue of Amazing Kids magazine.)
The latest adaptive device is a special tricycle given to Maya by another family whose child had outgrown it. The trike has straps and pads for trunk support, pedals and handlebars positioned for good ergonomics, a high back for additional support and an assistance handle so an adult can help the child propel the trike.
Look out, Danica Patrick!
The trike was too big for Maya, so Ilana sought assistance from John Harrison, The Children’s Institute’s adaptive equipment technician. John built up the foot pedals and extended the handlebars, making the alterations durable but reversible so they can be removed as Maya grows. And today Maya moves around like champion race car driver Danica Patrick. “She loves that bike,” says her dad Peter. Maya’s good nature almost never falters. Mary Jo Smith says, “When she does something we ask for in therapy, and we smile at her and say ‘Yes!,’ she beams at us and does even more.”
But every once in a while, Maya—like everybody else—can be a bit stubborn. Abby smiles and says, “Since she’s turned 3, we’re seeing that more. She’s a bit more independent-minded on some days.” On those days, Maya’s therapists always have strategies at hand. For instance, when Ilana needs Maya to hold her head up and Maya doesn’t want to, Ilana positions her so she has to keep her head up in order to watch her little brother—2 year-old Landon—toddle around the PT gym (often wearing Ilana’s ID tags).
Now that Maya is 3, in-home services are ending, but Maya’s preschool in Cheswick offers some therapies, and she will come to The Children’s Institute more often. The new physical therapy schedule will probably include work in the pool, which Abby and Peter think Maya will love.
“We appreciate so much what The Children’s Institute doesand the ways they do it,” Abby says. “They engage Maya and help her make progress. But the whole environment is so supportive, even beyond the therapy. For instance, Landon can’t wait to see the outpatient receptionist, Becky Geyer. She lets him play with her Steelers teddy bear. Even on days when he’s reluctant to leave home, all we have to say is ‘Miss Becky’—and he heads for the door.” She continues, “We meet so many other families there. I can’t tell you how important it is to have other people who know exactly what you’re feeling, and who will laugh and cry with you. That’s been huge for us. Peter and I can’t say enough good things about The Children’s Institute.”
What does the future hold for Maya? Like smart parents everywhere, Abby and Peter don’t expect their daughter to meet anyone else’s timetable. They simply ensure that she has what she needs to advance, while they provide loads of love.
Peter says, “We want her to be happy; that’s our main goal. And we want her to reach whatever potential for independence she has.”
Abby adds quietly, “We realized early on that our family might not have a typical life. But it’s still an incredible life.”
Want more of Maya? Click here to read her story in our Amazing Kids magazine.