As a toddler, Paloma Medina was walking, talking and happily communicating with her parents in both and Spanish and English. When at 18 months of age Paloma lost her language and most of her functional capabilities, her parents were devastated.

“We didn’t see it coming,” says her mother Belen and father Rafael, a neuropathologist in the family’s hometown of Pittsburgh. “She was a perfectly normal baby and a perfectly normal toddler, and in less than six months, she lost 90 percent of her functional skills and communication skills.”

Paloma, now seven years old, was diagnosed with autism at age 18 months and began early intervention, receiving speech, physical and occupational therapy two to six times a week.

For parents whose child suddenly loses her ability to communicate and physicians don’t know what is wrong, the process is often a surreal nightmare. “Just imagine you are in a free-fall and you can’t stop,” Medina says. “Your parachute is not opening and you go to the doctor but no one tells you exactly what it is … as the years pass by, you just learn to live with it.”

Turning Cultural Challenges into Strengths

With a dearth of bilingual therapists in the Pittsburgh area, Paloma has retained her ability to understand both English and Spanish through working with her therapists in English, the occasional therapist who took Spanish in high school and through language immersion when visiting extended family.

With a mother from Spain and a father from Mexico, Paloma’s rich cultural heritage is being carefully cultivated while family and therapists work to help her regain communication in both languages.

Since Paloma was talking before she dramatically lost communication and developmental abilities, her mother was brought to tears when at age six, Paloma said “mama” again after four years of intensive therapy. “It took her four years, but it made me feel very proud,” Medina says.

Through years of therapy, Paloma has begun to regain some of her communication capabilities and developmental skills. When she was out of diapers again at age four, her parents were relieved.

Paloma’s parents credit her recovery to intensive therapy and a nurturing home environment. “Without this therapy, who knows where she would be,” Medina says. “As parents, we do whatever we can, hoping for the best. She is very sweet and very happy and we hope that eventually, she will be able to communicate more and more and become more independent.”

Medina says what while several other parents she knows choose alternative treatments or a more aggressive approach for their children with autism spectrum disorder, she and her husband have chosen to stay the course, opting for therapy, which does not carry any risk. “This is why we invest the time in all the therapy sessions; because we know there are no risks involved,” she says.

Specialists originally told Medina to speak only English around her daughter. They said that she would regain language faster using only one language and it would be less confusing. However, Paloma’s parents wanted her to be able to communicate with the rest of her family, as speaking only English would create a language barrier between her and her grandparents.

The Medina family has managed to create a delicate balance between working with therapists in English and speaking English to Paloma when visiting family, while keeping communication lines open with her Spanish-speaking grandparents.

Paloma’s physician, Diego Chaves-Gnecco, MD, MPH, says, “Having a child who is bilingual can be challenging because they might be referred to [a physician] later because parents think the child is not speaking because he is exposed to two different languages. However, children who are bilingual should not have any delay.”

For years, experts recommended that parents use only one language. However, Chaves-Gnecco says there is not enough evidence to support that assertion. “It is a personal decision the family needs to make on a case-by-case basis. As you saw with Paloma, sometimes it is difficult to find bilingual therapists for the children,” he says.

For therapists working to implement treatment protocols for bilingual patients, there is a delicate balance between encouraging language skills and implementing therapy.

A Pittsburgh-based Children’s Institute therapist, Emily Torchia, MA, CF-SLP, works with Paloma several times a week. Torcia says she thoroughly enjoys working with Paloma because she “definitely has an opinion and she lets it be known.”

Only last August, Paloma was non-verbal. As she began making strides, saying “mama” and “agua” when she needed something, therapists began to take away communication devices to force her to rely on using her developing language skills.

Torchia also credits Paloma's family with her beginning recovery, saying, “One of her strong points is her ability to interact with other people.”

“Because of her parents and her home environment … they include her in their world and they know how to play a part in her world … she developed an ability to interact with other people, she can really go back and forth and communicate with you,” says Torchia.

Embracing Diversity

Shannon Nowak, MA, CCC-SLP, president of TrabaLenguas, a Chicago-based bilingual therapy game company, emphasizes the importance of integrating cultural values into therapy sessions.

“It was always fun to have students compare traditions during holidays with one another,” she says. “Just because my students spoke Spanish, [it] didn’t mean they all shared common backgrounds. Talking about what people do in Mexico versus Puerto Rico versus the American Mid-West ‘mainstream’ seemed to make everyone feel valued."

When working in the Chicago public schools, she was assigned to bilingual students because of their Spanish dominance, working to encourage them to build their home language. “I always interacted with my students in Spanish – in conversation as well as in intervention – to make them most comfortable using language with me,” she says.

Nowak focuses on building a strong language base in patients’ home language. She says the stronger their home language, the easier it is to later incorporate English into their repertoire as needed.

“As their language competence improved,” she says. “I reinforced their attempts to use English by responding in English. However, I never praised them more highly for using either language in order to support them as the lucky ‘bilingual language users’ that they were.”

Cultural Competency Programs

While experts at Children's Hospital of Pittsburgh are working on increasing the number of bilingual therapists available, the hospital has also developed a bilingual primary care clinic and a mobile clinic for Hispanic and Latino families.

Chaves-Gnecco, a Children's pediatric resident and native of Columbia, founded the first Children's bilingual clinic for Spanish- and Portuguese-speaking patients in the summer of 2002. Since then, the program has grown to include more than 400 patients.

Chaves-Gnecco is working with the Cranberry, Pa.-based Parent Education and Advocacy Leadership Center, which recently partnered with the Children's Hospital of Pittsburgh to reach the Hispanic community in that area. “It is important for parents to be involved with their children with special needs,” he says. “The program tries to address all the needs for the family and empower the community to advocate for their own health.”

In late 2004, Chaves-Gnecco organized a mobile clinic that provides primary care to Hispanic and Latino children on the south side of Pittsburgh. This program, offered by the hospital’s Ronald McDonald Care Mobile, is known by its Spanish name, Salud Para Niños (Health for Children).

“Pittsburgh’s Hispanic and Latino populations have largely been an ‘invisible community’ because they are spread across the region and not in a centralized location. But it is a community that is growing quickly and we're concerned about their access to healthcare,” Chaves-Gnecco says. “Our goal is to overcome language barriers to healthcare. By offering a bilingual clinic, we can improve their access and do it in a culturally sensitive way.”

A Growing Population

The national Hispanic population has expanded greatly in recent years and approximately one-third of them are children under age 18, according to the U.S. Census Bureau. Many of these families have difficulty accessing healthcare because of cultural and language barriers or lack of insurance, according to Diego Chaves-Gnecco.

According to the U.S. Census Bureau, southwestern Pennsylvania’s Hispanic population grew by 44 percent between 1990 and 2000, from 12,099 to 17,500.

The bureau predicts that the non-Hispanic Caucasian proportion of the population is projected to decrease to less than 72 percent with about 13 percent African-American; 11 percent Hispanic origin; four percent Asian and Pacific Islander; and less than one percent American Indian, Eskimo and Aleut in the next five years.

In fact, the Hispanic-origin population is expected to contribute 32 percent of the nation's population growth from 1990 to 2000, 39 percent from 2000 to 2010, 45 percent from 2010 to 2030 and 60 percent from 2030 to 2050, according to the bureau.

According to Chaves-Gnecco, while the physical and occupational therapy fields are expected to continue to grow, creating a niche for bilingual therapists is not as important as fostering cultural competency. He says bilingual language skills are not as important as the ability to set aside the “physician knows best” approach and listen to the family’s needs.

“It is great to have bilingual skills but having culturally competent healthcare teams is the most important indicator of future success,” Chaves-Gnecco says. “Interdisciplinary healthcare teams who can understand the needs of the family, who can listen to the family, who are willing to understand where the family comes from and develop a plan based on the needs of the family related to culture, language and insurance are essential.”

Children's bilingual clinic is staffed by Chaves-Gnecco and two other Children's pediatric residents, Roberto Ortiz-Aguayo, MD, a native of Puerto Rico and Isabela Cajiao, MD, a native of Columbia. The clinic offers well- and sick-child visits, immunizations, lead screenings, vision and hearing screenings, sports and school physicals and other primary care services. However, Chaves-Gnecco says the clinic does more than simply provide healthcare.

“We focus on the health and well-being of the entire family. We help them understand when they qualify for insurance programs, we offer Hispanic car seat safety checks and we provide their children with bilingual books,” Chaves-Gnecco says.

Kate DeBevois is the staff writer for Therapy Times. Questions or comments can be directed to kdebevois@valleyforgepress.com.