Two-year-old Conchita has cerebral palsy and was abandoned in Guadalajara, Mexico, when she was a day old. After meeting Conchita and other orphaned children at a Catholic charity, Bienaventurados de Jesus (the Fortunate Ones of Jesus) while on vacation in July 2006, I decided to return the following summer with two colleagues to help give these children a voice.
My aunt, Elisa Fajardo, an author and lecturer on bioethics in Guadalajara, had taken a theology class with the founder of the home, Brother Francisco de la O, and she arranged the initial visit. The group home, located in an upscale neighborhood in Guadalajara, first opened its doors in 1991, to a child with cerebral palsy. Today there are 20 individuals with disabilities ages 1–30 living at this home for abandoned children with disabilities, run by religious brothers and sisters belonging to the Catholic order of the Society of the Servants of Jesus.
After that first visit I kept thinking of Conchita and the other children sitting in their wheelchairs along the wall of the main dining room with no way to communicate. When I began working in the San Francisco Unified School District 16 years ago, I never imagined that working with students with severe disabilities during that first year would benefit children in another country, but now I realized that my expertise could help meet the needs of these children. I planned a visit to the group home in summer 2007 with two colleagues, speech-language pathologists Betsy Lance and Paul Stahoviak, to help these children communicate.
The children at the home received medical care and physical therapy but no speech-language intervention. Like many children with cerebral palsy, these children could benefit from augmentative and alternative communication (AAC). Preparing for the trip, we gathered a wide variety of low-tech AAC devices, including switches (speech-generating devices that produce a single message as well as those that have sequential messaging capabilities) and a toy rooster to attach to the switches. Other materials included a bubble-blower and Spanish word picture flash cards. We also prepared Spanish books and corresponding laminated Boardmaker® pictures that could be attached to laminated folders lined with hook and loop fasteners, and purchased toys such as Koosh® balls, and soft, stretchy finger frogs.
A Change in Plans
We planned to work with all the children in the home during our week in Guadalajara, and to focus on diagnostic testing, intervention, and consultation with primary caregivers. But there was a misunderstanding about our arrival date—and when we arrived, we learned that some of the children had been taken to foster homes for the summer.
I wondered how we would serve the children we had come so far to see, but the home's founder allowed us to see as many of the children as we wanted at their foster homes. After resolving the situation, I joined my colleagues in the main dining room where they had a group of nine other children and young adults engaged in fun activities. At the end of four hours of treatment, the children were able to imitate words, and push buttons, pull strings, and touch a flexible switch to make their desires known. "Gallo," a furry red rooster that served as a sensory-stimulating reward toy to teach cause and effect, was an immediate favorite. We connected the rooster to a variety of switches, depending on the child's physical abilities. By the end of the day, the children were enthusiastic about communicating.
An Unforgettable Week
We began an unforgettable week of taxi rides from one house to another throughout Guadalajara and the surrounding suburbs to provide individual and group speech-language intervention to the children who lived with foster families for a month each summer. After an hour-long ride, we arrived in one of the most impoverished areas of the suburb of Tlaquepaque to see 2-year-olds Conchita and Pio, who were living with the same family in a small brick home where the single bedroom also served as a living room.
Lance began to work with Pio by using the Touch and Feel: Puppy book to develop recognition skills through tactile stimulation. After working with Lance, Stahoviak handed Pio a flexible switch to see if Pio could operate the rooster, and with prompting, he succeeded. Soon after, we had Conchita, Pio, and several neighborhood children interacting with one another, playing card games using picture cards of different animals and an AAC device to supplement the cards—all for the benefit of Conchita and Pio, who listened and watched attentively.
We also visited a young teenager named Lupita, also in Tlaquepaque, where we were greeted warmly by the foster family with several children of various ages. We spent the afternoon revising a simple communication book that Lupita uses at school by placing visible, easy-to-lift tabs describing each of the communicative categories, making it easier for her to access the different pages containing requests and needs. We also took turns showing Spanish verb picture cards to Lupita so she could practice correct sound production to boost her articulation skills, particularly the bilabial /p/ and /b/ sounds. Lupita found it amusing to see us modeling the words, and although she initially was reluctant to make the sounds, with encouragement she succeeded.
Lupita is one of six children at the home who is bussed everyday to a non-profit school for children with cerebral palsy in Guadalajara. The Centro Integral de Rehabilitacion Infantil (CIRIAC; Integral Center for Infantile Rehabilitation) was created 20 years ago and offers a variety of services including physical therapy, speech-language services, and swimming therapy. The school also supports students in the transition from early childhood intervention to independent living. Although CIRIAC is one of the primary learning institutions for children with disabilities in Guadalajara, more schools are emerging.
We also visited 22-year-old Tere, who responded to questions with her eye gaze, moving her eyes up for "yes" and keeping them still for "no." Although Tere was sick, she enjoyed asking for the Koosh ball using the AAC device, which was programmed to say "I want the ball please." She yelled with excitement as we pulled the stretchable ball until the rubber hook could stretch no more and let it go. At this point she tugged a string with her finger to ask us to pull the ball again.
At the end of the week, we provided a workshop in which we described our experiences and discussed the AAC devices with the home's founder, a psychologist, a board member, and staff. Currently there is no follow-through on using the AAC devices we left behind. However, through weekly communication with staff and board, our goal is to form a team of volunteers who will visit weekly to communicate with the children using AAC.
We accomplished our goal for the week: to use our skills as SLPs to give children, who otherwise would not have had the chance, to communicate. The results of our mission were visible in the joyful faces of the children as they celebrated the discovery of communication. I am now planning an annual summer mission for a team of SLPs who will provide speech-language treatment and train staff members at the home in an effort to allow these children to make their needs and desires known.