Excerpted from Case Study 1 of Building Cultural Reciprocity with Families: Case Studies in Special Education by Beth Harry, Ph.D., Maya Kalyanpur, Ph.D., & Monimalika Day, M.S.

Copyright © 1999 by Paul H. Brookes Publishing Co. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.

This case study presents the struggles of the family of a Salvadoran American young woman with cerebral palsy. The central issues challenge service providers to come to terms with their beliefs about independence, choice, and advocacy and to examine the needs of a student whose complex linguistic, cognitive, and physical attributes make her abilities very difficult to assess.

Silvia Navarro was 17 when we first met her. Her radiant smile and ready laughter, along with her frequently changing hairdos and attractive, light makeup, led her teachers to nickname her "Miss El Salvador." At school, her dark brown hair — sometimes permed, sometimes naturally wavy — was usually in a ponytail, but for special occasions such as a school party, Silvia wore it falling to her shoulders, pinned lightly with a colorful barrette, carefully chosen to complement the sparkling fabric of her dress.

Owing to her cerebral palsy, Silvia uses a wheelchair, with which she would often speed so fast through the school halls that her friend Asha would tell her that she ought to get a speeding ticket. Silvia's disability also causes her to have difficulties with her speech. When we met her, her Spanish was more advanced than her English, but she could carry on a conversation in either language. She always worked very hard to articulate clearly, and she readily repeated words or phrases until her listener understood. In English, Silvia tended to speak in one- or two-word phrases, whereas her spoken Spanish was much more fluent and her understanding of Spanish seemed appropriate for her age. Silvia has good mobility in her upper body and, despite some spasticity in both hands, she uses her left hand for fine motor tasks such as writing, typing, or painting. Her mother, Rosa, describes this youngest of her four children as "una persona muy contenta" [a very happy person].

All of our work with Silvia reinforced Rosa's very positive description. Not only did Silvia seem happy most of the time, but she also showed tremendous patience with difficult tasks. Silvia was in a self-contained special education class in a general high school, and her education program had a predominantly vocational emphasis, with a job placement 4 days per week. Our observations of this program revealed Silvia's determination to succeed at challenging tasks, such as steam-pressing clothes at the secondhand clothing store where she worked during the first school year and summer of our project. Similarly, her tolerance for frustration was evident during the two summers when project efforts to assist her in using public buses resulted in frequent inconveniences and delays, owing to faulty bus equipment and scheduling. Silvia smiled and kept on trying through all of these difficulties. The only time that we saw her appear discouraged was when her family received news from El Salvador, in the first summer of the project, that her grandmother had died. Silvia, in grief, missed 2 days of work that week.

Silvia's father, Trinidad, had been the first in the family to leave their native El Salvador to come to the United States to pave the way for his family. Some years later, Rosa came, leaving Silvia and her siblings in the care of their grandmother and aunt until they, too, could join their parents. Silvia came to the United States at the age of 11 years. When we met Silvia, she said that although she liked the United States, she liked her native country better because she had there many cousins with whom she had a lot of fun.

Growing up in a rural area of El Salvador, Rosa and Trinidad did not have the opportunity to attend school and learn to read and write. Both speak Spanish, and although they understand some English, they do not speak it. These features, however, did not deter the family from achieving their goals. Trinidad works in construction, which was abundant during his first years in the United States, and, according to Rosa, "él trabajaba y trabajaba" [he worked and worked] until he made enough money for the family to purchase a small house. The house had been abandoned for some time and, according to Rosa, had snakes living in it. Now the bright white cottage with its red-trimmed windows and eaves and its carefully tended flower beds lining the small, sloping garden, is undoubtedly the prettiest on the street. From the start, the house was perfect for them because the previous owners also had had a member with a disability, and they had built a ramp from the kitchen door out to the back garden. But throughout the 4 years of our project, Silvia's chair still had to be pushed up the slope from the street to the part of the garden where the ramp began. This daily effort took quite a toll on Rosa's petite frame, and when we met her she was having trouble with her back. Nevertheless, Rosa's smile was always cheerful, and her support of her daughter never wavered.

Initial Research with Silva and Her Family

In the first year, we focused most of our research efforts on observing Silvia at home, at school, and at the job where she was placed for about 4 hours daily from Monday through Thursday. We also interviewed Rosa and, on one occasion, Trinidad, but he rarely was available for interviews because of his varying work schedule. In our frequent visits to the home, Silvia's sister Doris and her brother Oscar were also included in interviews. Other family members, such as her sister-in-law Amelia and her cousin Patti, also were occasional participants in our conversations. Silvia's brother Luis was married and already living in his own home, so we did not see him often. At school, we interviewed Silvia's teacher and teaching assistant, her speech-language pathologist, and her classmate and best friend, Asha.

The information that we gained throughout this research resulted in four main thrusts for our efforts in the action research phase of the project, which began at the end of the first academic year — the summer of 1993. These efforts did not begin all at once; rather, we developed, reviewed, refined, and redeveloped our plans as we went along, based on ongoing evaluations by Silvia and her family members, teachers, home tutors, and work supervisors as well as from our own observations. Overall, our efforts over the course of the subsequent 3-4 years could be subsumed under the following four goals:

1. Increasing Silvia's work skills and opportunities along with her independence in using the bus to go to her summer job
2. Helping Silvia to pursue her friendship with Asha
3. Increasing Silvia's reading skills
4. Trying to assist the family in gaining access to appropriate benefits related to Silvia's disability

We detail each of these efforts in the sections that follow.

Work and Independence

As with the other high school students, the project's main focus in the summers was on employment. The summer jobs sometimes were organized by the students' teacher and sometimes by the project staff, the latter arrangements all being on the university campus. Payment for the jobs, however, came from an agency that had county funds for paying summer salaries to students with disabilities. In Silvia's case, her summer jobs all were arranged by her teacher and usually were a continuation of her academic year placement. In the first summer, Silvia continued in the job that she had had during the school year — working at a secondhand clothing store run by The Arc (formerly the Association for Retarded Citizens [ARC]). The project assisted by providing a job coach who also did travel training, as we had determined that this would be a useful goal for Silvia.

Silvia had proved herself an excellent worker during the year, and her summer tasks continued to be steam-pressing the clothes, putting on price tags, and clipping off buttons and placing them in a bag. Although the tasks seemed rather tedious, Silvia enjoyed the process of working. In the summer, it turned out that she needed practically no help with her work, and we were able to observe her tremendous determination, persistence, and good-natured approach to all of her tasks.

Giving Silvia opportunities for a wider range of social interaction was also a goal of the summer placements. Socially, Silvia was at first shy with strangers but always cheerful and increasingly friendly as she got to know people. Unfortunately, on the first summer job, there were not many opportunities for socialization because the few staff often were on separate lunch and work schedules.

In the second summer, Silvia's teacher once again arranged for her to continue in a job placement that she had started in the previous semester. This was at the county's Department of Social Services, where she was learning to remove boxes of files, copy the title of each file onto a master list, and replace the files on the shelves. Once more, we provided a job coach, Gail, whom, once more, Silvia hardly needed! Gail reported that Silvia had no trouble with recognizing and copying the letters but often could not discern where a first name ended and a last name began, a feature that most likely related to her lack of reading ability. This may also have been related to her unfamiliarity with English last names; Gail observed that Silvia enjoyed pronouncing the Spanish names. Gail would say the names with Silvia and emphasize the capitalization at the beginning of the name, and Silvia soon caught on. Silvia seemed to enjoy her work very much, although it required a great deal of repetition as well as considerable fine motor skills in handling the files and writing the titles. Her supervisor reported that her work was "always correct."

Socially, we were able to learn more about Silvia that summer because several of her co-workers took breaks and ate lunch together. Silvia got along well with them and, at first, enjoyed listening to their conversations but engaged in minimal participation. By the end of the summer, however, Silvia had become quite a vocal member of the group and joined the group's morning routine, which they called "typical question of the morning". By the end of the summer, co-workers reported that Silvia "joined right in" with their discussions. As the job coach gradually faded out her presence on this job, Silvia's female co-workers were very helpful to Silvia in the area of toileting, where she needed help getting from her chair to the toilet.

In the third summer, Silvia's teacher once more arranged for a continuation of her school-year job, this time at the public library. This job is described in more detail in the section "Learning to Read" because her tasks were specifically tied in to the progress that she was making in reading at that time. That summer job was the most enjoyable for Silvia socially because she had worked there during the school year and was well known and welcomed by all of the staff.

Travel Training

When we began to plan for Silvia's summer job the first year, the issue of transportation was paramount. Because the family car was not in working condition, everyone except Silvia traveled mainly by public transportation. We suggested to Rosa and Silvia that we try to have Silvia use the bus, too, and they were quite enthusiastic about the idea. We planned that the job coach would do as much of the travel training as possible, but Erin, Silvia's first summer job coach, who was one of our graduate students, was able to provide travel training only 3 of the 4 days of Silvia's job. Before we knew it, Rosa had come up with her own idea of engaging a neighbor to help on the other days. The project was able to pay the neighbor for these services.

During both summers, travel training proved an exciting but frustrating challenge for Silvia. The project had arranged with the city transportation system to put a bus with a lift on Silvia's route on the appropriate schedule. On the very first day, Silvia and Erin used the recommended route, which entailed a two-block walk and then riding on two buses. The first ride presented a very helpful bus driver and no problems. The second driver, however, could not get the lift up and had to wait for another driver to help him. This driver also did not know the street that Silvia needed, and Silvia and Erin got off two blocks too soon; Silvia arrived at work 20 minutes late, hot and tired, but still very enthusiastic.

Erin soon learned that Silvia was both skilled and motivated in her work. Despite her limited use of her right arm and hand, Silvia persisted and succeeded well with her tasks, hardly wanting to take a break. Thus, her first day went well at work but ended with tremendous frustration on the bus ride home. Erin's notes for that ride read as follows:

The trip home was a little more difficult. The wheel lock on the bus [for Silvia's chair] did not work properly, and the wheelchair kept rolling forward as the driver stopped the bus. He had to stop about three times to try again to get the lock to hold. This made us late, and we missed our connecting bus. We had to wait until 2:30 for the next bus. The next bus arrived, and the lift did not work. It was hot, we were tired, and the bus driver tried for only 5 minutes to get this lift to work and it did not. He told us that we would have to wait for the next bus and hope that it had a lift. We waited until 3:15 for the next bus to arrive. The lift worked, and we got on the bus. We rode about 10 minutes and we were home. It was a long day. It took about an hour and a half for us to get home . . . all in all, we did get to work. Silvia did work, and she was still excited. She did not become frustrated — much — but we will look for new avenues or new directions for transportation. (June 28, 1993)

The next working day, Rosa recommended a different route, which involved a longer walk but only one bus. Erin's notes for that day reveal the ongoing challenges of public transportation for Silvia:

I picked up Silvia at her house. We have a new bus route. This time we're only taking one bus instead of two. We have to walk a little farther — about six blocks — but it's easier than trying to transfer and take two buses. So we walked six blocks and Silvia led the way, and we walked through winding streets and back streets to get to our bus stop. We had one major problem today. We were walking down the street and a large, loud Doberman ran up and started barking and running around in circles. The dog scared both of us to death. We stopped and waited. Silvia was scared, but I told her to be calm and just stop and wait and maybe he would leave. So we stopped and waited, and he left. He went back in his yard, but then he barked and we continued. We crossed the street and went over and the dog came out of the yard again and came over to where we were and started barking again. We stopped, then he turned around and left. We then continued, very nervously, on our way to the bus stop. After we arrived at the bus stop, we waited about 15 minutes for the bus. (June 30, 1993)

Over the course of the next 6 weeks, Silvia's travel experiences continued to have recurring difficulties, such as imperfect wheel locks and late buses. On one more occasion, they encountered a lift that did not work, this time resulting in Silvia's not being able to get off the bus:

The day started off fine, and we were early leaving for work. When we arrived, we could not get off the bus. The bus driver could not get the lift to work, and we were stuck on the bus. The bus driver's telephone did not work. He had to get off the bus and go across the street to the mall to call the office. We had to wait 35 minutes on the bus for the repair van to come and repair the lift so that we could get off, and then we arrived at work 30 minutes late. Throughout the entire ordeal, Silvia did not become frustrated; she remained calm and had a good attitude. (July 21, 1993)

The end of that same day showed that things did go well sometimes: The ride home was uneventful. We met a bus driver who recognized Silvia from days before, and he was happy to see her. He joked with her and kidded her, and she laughed and talked to him. At the end of that first summer, Silvia said that despite the difficulties, she loved traveling by bus and would try again the next summer "if they fix the buses."

It's continued in the book!