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Bolivia Program > Bolivia 2007

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Bolivia 2007

Bolivia 2007
 

Bolivia currently has no academic programs in speech-language pathology, or even special training to work with children with communication disorders. The few speech-language pathologists who live in Bolivia come from other Latin American countries, and the number of speech-language pathologists far outstrips the demand. As a result, the need is great and there are many opportunities for our TC students to provide speech and language services.
 
To gain clinical experience, our TC students worked with children and adolescents at several locations. One group of students was placed at a school for students with moderate to severe disabilities. Another group worked at the national children’s hospital which is in La Paz. A third group was placed at a signing-based school for the deaf. Through these experiences, students saw the educational placements and services available to these children, and other available resources. In addition, they shared with the Bolivian providers clinical perspectives on identifying and providing appropriate intervention to children with communication disorders.
 
The stories that follow were written by the 2007 students and the supervisors and were presented in a seminar at ASHA in Boston. Students were asked to focus on a particular child or event that significantly impacted their development as speech language pathologists. (The names of the children, the parents, and the teachers were changed for confidentiality reasons.) 
 
The 2007 Bolivian stories, by the TC MS SLP students
 
The angriest boy, by Yana Pleshivoy
 
During my time evaluating children and interviewing their mothers at Hospital del Nino, I gained valuable insight into their lives, beliefs, culture, and knowledge of disabilities. But what surprised me most was the reasons behind these mother’s convictions that the cause of their child’s disability was due to something they had done wrong during their pregnancy, such as get spooked, or have an evil eye cast on them. Despite these ideas and the lack education and resources available to them, these women did not reject their children, instead they embraced the opportunity to learn from us and break the communication barrier between them and their child.
 
One child who stands out most vividly in my mind is a young boy who had been involved in a motorcycle accident. His name is Habeeb, meaning “my love” in Arabic and he was a 1 year 6 month old boy who presented with a language delay and behavioral issues. The first time I saw Habeeb, his grandmother carried him into the evaluation, and I noticed his mother walking several steps behind, a fearful expression on her face. With his forehead wrinkled, eye brows pointed upward, and the corners of his mouth turned down, Habeeb was by far the angriest child I had ever seen. He screamed and turned bright red if anyone tried to touch him, including his mother. I wondered how so much anger could fill such a small body. 
 
Throughout the course of our therapy sessions, I learned that Habeeb was a bright child with a lot to say but limited knowledge of how to express himself. Crying got him everything he wanted from his mother. To replace his tantrums we provided Habeeb with alternate modes of communication, words. He was prompted to use his words to request his wants and needs. Slowly, Habeeb began to participate in activities, gesture to songs, and most importantly he finally hugged and kissed his mother. 
 
Out of all the mothers and children that I worked with in my short time at the Hospital, I observed the most profound change in the interaction between Habeeb and his mother. I will never forget the tears in his mother’s eyes, the smile on her face, and her words at our last meeting, when she said, “you gave me back my son.” And when I knew Habeeb, “my love” regained its true meaning in her eyes.
 
 
The Magic of Stories, by Marina Wilson
 
At CEREFE, I worked in a classroom with eight children who had a variety of developmental issues including Down’s Syndrome, autism and mental retardation. The teacher was a very sweet woman named Maria who genuinely cared for her students and wanted to learn how to better engage them. 
 
Maria, like most of the teachers at CEREFE, had no formal training--and this class was a challenge! Jose, a 13-year-old boy with autism, towered over everyone in the class, and would wrap his arms around your legs if you made the mistake of wearing boots. Noemi, wiry and high strung, refused to participate in any activities and would instead look out the window or wander around the room and ask for her mother. The other children participated in one art project each day, which generally entailed gluing bits of paper down to make a shape or a number. The rest of the day would consist of pasa tiempos, or pass times. The children would be given a bucket and plastic clothespins and were encouraged to put the pins around the lip of the bucket, over and over.
 
One day when Maria was not in class, the teacher’s aid, Eloina, asked me what I had planned when I came in. Truthfully, I had planned to work with my client individually and hadn’t planned any group activities. I looked at the students who were once again doing pasa tiempos. I remembered that I had brought a book—Clifford the Big Red Dog. I told Eloina that I could read to the students and she said, “they only have an attention span of about 10 seconds, but you can try.” So, I said to her, “Then I’ll try.”
 
I began reading Clifford’s story, while asking different children to show me Clifford as I turned the pages. To my amazement, all of the children sat rapt for the entire ten minutes in which I read Clifford—they were more engaged than I had ever seen them in the month I worked at CEREFE. When I finished reading, I looked up at Eloina who said how surprised she was to see these children to pay attention for such a long time. I made sure to tell Maria how well the children in her class had responded to shared-reading.
 
Before leaving, I brought a stack of books to Maria’s class and she agreed to incorporate read-alouds into her curriculum. I was both heartened to see this potential in the children at CEREFE and a little heartbroken to see the effect low expectations had had on them. I realized that day that it is my job as a Speech Language Pathologists to reject the low expectations so often placed upon children with disabilities. It is my job pull the pasa tiempos out of our classrooms and to engage each child authentically.
 
 
The mothers, their children and the awayos, by Mariana Silva
 
Eagerly they would arrive in the morning with a child on their back, tucked into the awayo. The babies would peak from the mother’s backs as they entered the hospital room. A woman carrying a child on her back is as natural in Bolivia, as seeing here in the states a mother pushing a stroller. The awayo is practical and convenient to both child and mother. The mother goes on with her daily routines, as the child simply watches-- a passive learner.
 
The mothers came to the hospital from long distances because they had heard that there were people there who could help their children learn to speak. A mother, two graduate students, and supervisor, and the child, would sit together on a blue mat on the floor. The mothers took these therapy sessions very seriously. For most of these mothers, we were the first speech language pathologists to see their child because SLPs are so rare in Bolivia. They also knew that we were only there for a month and they wanted to learn all they could before we left.
 
During the sessions, the mother watched as we modeled how to stimulate language. Then, it would be the mother’s turn to do what she had just seen. For many of these mothers, the kind of "teaching talk" that we SLPs do was not very natural, and probably was greatly influenced by our own cultural sense of good parent-child talk. Even so, every mother worked to overcome her awkwardness and master the interactive communication strategies that we demonstrated. We worked together so that by the time we left, the mothers would have enough understanding of what we were doing to continue the work. 
 
When the day was over, these mothers would bundle their children up again in the awayos for the for the long bus trip back up the mountain to El Alto. They could go to sleep that night knowing that even in a country where it is extremely hard to find an SLP, they had done everything they could to help their child with disabilities learn to communicate.
 
 
Bringing AAC to a classroom, by Cynthia Centeno and Akiko Fuse

The
classroom I worked in with Akiko, was an “inicial” (beginners) room for the youngest children at CEREFE. Many of CEREFE’s children are indigenous Aymara and Quechua people, so for many Spanish is a second language. The 9 children in the classroom ranged from ages 6-11 years old. 4 were autistic, 2 had Down syndrome, and 3 had severe cognitive impairments. Some of the non-verbal children communicated through gestures and facial expressions and others seemed to exist in their own world using no form of outside communication.
 
Martha, the teacher, was quite affectionate with the children and seemed to love working with them. She usually put out different art materials at each of the 3 tables for the children to work on independently- such as painting toilet paper tubes, and cutting pictures out of magazines. Reading, writing or any other form of literacy was simply not taught.
 
Akiko and I attempted to engage the classroom in language based group activities. We observed that everyday at snack time, Martha would give out snack whether the children would ask for it or not. We wondered what would happen if the children were presented with a snack as a communication temptation. We created a simple but effective plan- the “yo quiero jugo (I want juice) activity”. We made Gatorade for each other, modeled and gestured the “yo quiero jugo ” utterance for children and prompted them to imitate our utterance or our gesture. Some of the children got it right away, others had to be heavily prompted, but everyone did it. A couple of the kids even helped their peers who were having difficulty with the task. Some of the kids eventually gestured or said “yo quiero mas” when they wanted more.
 
After this activity, Martha modeled “yo quiero” , on a regular basis for the children to imitate. The children quickly learned how effective their words and gestures could be. Aside from introducing literacy based activities into the classroom, we also introduced AAC as well.
 
We started to use the AAC pictures with a child named Jorge, who was nonverbal but always attentive and cooperative. Jorge wore an orange hat everyday and had a nice smile on his face all the time. Because he always behaved well but is nonverbal, he tended to get less attention from the teachers. He would express himself by pointing, and pulling on someone’s shirt in order to get attention.
 
When we started to point to the pictures and verbalize “I want to go to the bathroom”, “I want to eat”, “I (am) hungry”, he quickly learned to point to the corresponding pictures. So when we asked “What do you want to do?”, he responded by pointing to “I am hungry. I want to eat.” We knew he truly understood the system because his answers at any given time were very consistent. Once he knew that he was able to communicate his needs to us, he opened his eyes widely, showed a lot of excitement by shaking his body and grabbing our arms tightly. After that day, his nice smile became a gigantic smile.
 
Martha witnessed his use of AAC to communicate and was very pleased to see that she now had a way to communicate with him that she could build upon. On our last day of school, the social worker and psychologist were in the classroom and expressed interest in the materials we were leaving for Martha, especially the AAC pictures. They mentioned other staff members that would find these resources to be useful. This was a great feeling because not only was the classroom teacher open to continuing some of the activities we started, but resources and ideas would be shared with other teachers throughout CEREFE as well.
 
 
The gift of AAC, by Nicole Crystal
 
I was a little apprehensive about going into the Hospital del Nino in Bolivia for the first time. I’d known about AAC and Cerebral Palsy long before studying speech pathology, having worked full time with a nonverbal 4 year old in Boston. While my experience in Boston and my graduate training enhanced my understanding of AAC, nothing made me so aware of the amazing impact it could make on the life of a child, than my experience in Bolivia working with a three-year-old boy named Roberto.
 
When I first arrived in the hospital I was introduced to Roberto’s mother, Andrea. Her face looked decades older than her 20 years, bearing the worry lines and deep creases that showed the depth of her concern and unhappiness regarding Roberto. She was very dubious about therapy, and seemed both terrified of and resigned to the idea that her child might never be capable of speech. Fortunately, Roberto was an extremely bright child.
 
In Bolivia, a child with severe physical disabilities such as Roberto’s is most often assumed to have equally poor cognitive abilities and thus, while the child I had worked with in Boston has been receiving services since before age one, my supervisor and I were the first people to work with Roberto on any form of communication. During the short period that Roberto and I spent together, I created a communication board, which he, not surprisingly, picked up quickly and excitedly.
 
Andrea, though first hesitant that the communication board would hinder Roberto’s chances of ever speaking, became increasingly enthusiastic over the weeks as they practiced at home and he began to progress. At our final session, with a smile on her face, she thanked me and assured me that she would continue to work with him. I have no doubt that in the time since I left, with his determination and her dedication, Roberto and Andrea have made even further strides in his language development.
 
Looking back, while I can’t help but think about the many children in Bolivia who have not yet received services, I now understand just how valuable the work of a speech language pathologist can be. While my time in Bolivia was short, I left knowing that with my graduate training, I made a significant difference in this child’s life, having finally opened up his world to one that includes words and expression.
 
 
Julia and the Three C's, by Sabrina Ebert
 
One of the life changing experiences I had in Bolivia involved a little girl named Julia. Julia is a beautiful, 4 year old girl with cerebral palsy, and my work with her can be described in three C’s. No, not the ASHA C’s, but rather culture, collaboration, and caring.
 
In Julia’s culture, very little is known about disorders such as cerebral palsy. In fact, Julia’s mother was shocked to learn that her daughter was not the only child in the world with special needs. This was a dedicated parent who wanted the best for her daughter, but had’t known where to turn for help; which brings me to the second C, collaboration. Julia’s mother was an active participant in therapy every step of the way. We listened to each other and worked as a team to encourage Julia to communicate; which led to success when paired with the third C, caring. It was our care for the families we served and the giving of ourselves; be it singing the elefante song wholeheartedly for hours and hours, or our midnight work sessions creating AAC books by hand, that helped us connect with children like Julia and their families.
 
On our last day, with tears in her eyes, Julia’s mother embraced us saying, “I never really knew my child before you came” and that she had never before expected her daughter to be able to say I love you, but that we had helped her believe it is possible. So yes, I came away from my experience in Bolivia with a wonderful tour of a different culture, improved Spanish skills, and a few AHSA hours. But what I really came away with was the knowledge that we had given children like Julia a voice, and changed the lives of all those we touched for the better.
 
 
Leticia and Me, By Nicole Perrotto
 
My greatest lesson in Bolivia came in the form of a 9 year old, profoundly deaf, girl with mental retardation with an undiagnosed yet strongly suspected case of autism--her name was Leticia. When she was two years old, Leticia suffered a severe case of meningitis that unfortunately went untreated for a significant amount of time as did its effects on her cognitive and communicative development.
 
Leticia has attended Caminos de Sordos since she was 6, yet has remained in the lowest level “kindergarten type classroom” because she has no functional means of communication. Leticia cannot express her needs and wants; she cannot sign, write, or even paint or color. Sadly, despite warnings from teachers and psychologists, her parents have refused to believe that there is anything wrong with Leticia besides her deafness and feel that Camino is the best place for her.
 
The kind hearted staff at Camino was aware that Leticia had issues beyond their reach but never requested her removal from the school. They instead focused on teaching Leticia what they could and struggled daily to keep her calm and happy.
 
From the first moment I met her, I immediately recognized the characteristics of autism and I wanted to give Leticia the one-on-one training that I knew she needed. I focused on developing a modified version of the Picture Exchange Communication System, a technique not commonly used by fonos in Bolivia. I took photos of toys and foods that she liked in her environment, and created a basic communication book. After only one morning of intensive work--and many tantrums later--Leticia could discriminate between a field of two choices (M&M’s or Oreos), point to a picture representing the food item she desired, and sign please to solidify the request.
 
As her teachers and aids saw this their disbelief was overwhelming as was their eagerness to learn this new technique. One by one they sat with Leticia and me and with my guidance they enthusiastically participated in the training, encouraging and assisting Leticia to point and request. I was amazed at what we had done. Through my work I had shown others that Leticia had the capacity and desire to communicate and I opened their eyes to her potential, giving them the tools to continue to work with her and to reach her.
 
Bubbles and Humberto, by Melissa Oziel
 
My story is one of happiness and hope. I was working one afternoon at Hospital Del Nino in the pneumonia ward, and this little boy from across the room caught my attention. He was irritable, and his eyes were full of tears and sadness. He was attached to a ventilator. His mom mentioned to me that Humberto, was in the hospital for 1 month and that he does not speak, nor did he before his sickness.
 
For 3 days straight I went to Humberto’s bed. I read him stories. He ignored me. I tried to make jokes, he never laughed. He would not even grant me a pity laugh. He wanted nothing to do with me, or with anyone else. Until, one day, I found my miracle--Bubbles. His eyes lit up and I could see he was beginning to smile (although trying to hold it in), and finally he let out a laugh, a big laugh, a contagious laugh.
 
This small little bottle of bubbles enabled me to target Humberto’s communication. We started targeting a 1-word utterance “mas/more.” (which he actually pronounce “Mash”) so that Humberto could express his wants and needs. We then went to 2 words utterances “quiero mas/I want more” and then to a 3 word utterance “quiero mas burbujas/I want more bubbles”.
 
The first time his mother heard his voice, she cried and cried, hugged him and kissed him. His voice gave her hope that he was getting stronger and that she will be able to share new experiences with her son, through communication. His life, before the hospital, was filled with using his eyes, and ears to sponge up the world and he had attained all this knowledge. With the help of bubbles, Humberto was able to put all that knowledge into words, and let me tell you, the boy did not stop talking.
 
My last encounter with Humberto I gave him a book of animals and bubbles, of course. I walked away watching him and his mother interact in a way they never had before…through laughter and words.
 
 
The women and the charlas, by Natalia Rowe
 
We set out on the trip to Bolivia with a dual goal: to take and to give, to learn and to share knowledge. I knew from the start it was going to be a great learning experience, but my concern was: being a student at the time, what could I possibly offer them in terms of my knowledge and expertise?!
 
With this disquieting thought in mind, one morning, I arrived at CEREFE – a special education school – where we were presenting on autism in front of a very diverse audience: special education teachers, physicians, and families of children with autism; people who spoke Spanish, Aymara and Quechua; who held university degrees and those who could barely read and write.
 
As we were presenting, I was looking at the mothers with a great deal of surprise. The indigenous women – dressed in traditional colorful clothes, their skin darkened under the sun and their hair tightly pulled back in plaits – were sitting absolutely still, with no facial expression that I could discern. No questions. No comments. And, seemingly, no interest. But as soon as the last power point slide was up, it was there time to talk! They were asking numerous questions, sharing experiences, expressing support for each other, and even crying.
 
Their response was overwhelming, but it still wasn’t apparent to me how important it was for us to be there. But suddenly, one lady said that all these years she had lived with the thought that her child’s sickness was somehow her fault; that she was to blame for it, and that now she was so relieved to hear it was not so at all! And that is when I realized the enormous impact we had just made in these people’s lives.
 
 
Manuelito, by Elisa Radice
 
When I first saw Manuel he was curled up in his crib, sleeping. Unlike the rest of the children in the GI unit, Manuel had no one sitting next to him – not a family member or a nurse. The head nurse told us that he had been abandoned at the hospital. He looked like he was around 12 months old, judging by his size. We were shocked to be told that Manuel had just had his third birthday. He was chronically underweight and would not accept any food with the exception of formula from a bottle.
 
I decided to focus my energies on him while in La Paz. The first day I came to see him he screamed and writhed in my arms when I tried to hold him, his legs totally rigid because of his cerebral palsy. However, as days passed, he gradually became used to having a regular visitor and would cry when I left instead of when I arrived. I spent hours rocking him, cooing to him, and singing him songs. I was one of the few students in the group who came to Bolivia with almost no Spanish skills, but I did my best to sing him songs in my beginner Spanish and to use the phrases I knew.
 
After about a week, I saw his face light up into a smile for the first time – and seeing that smile was the most profound reward imaginable. Every day at the hospital I worked on getting Manuel to accept different food, and by the time I left he was accepting yogurt from a bottle. The nurses had previously fed him while he was lying on his back in his crib, and I modeled how they could sit him up and provide trunk support so that feeding was easier for him. The mother of the child next to Manuel watched how I provided aural and tactile stimulation for him, and I noticed her talking more to her child as time passed.
 
Manuel gained some weight during the 3 ½ weeks that I was there, and the nurses and mothers of other children in the unit promised to continue the yogurt feeding after I had left. Even more exciting was the remarkable change in his affect that I witnessed over my time seeing him. His crying subsided and he was more engaged with his surroundings and the people in them.
 
Working with Manuelito reminded me of how much I, and all speech pathologists, have to offer to people all over the world, and how much need there is for our services. Watching Manuelito’s dramatic progression opened my eyes to what a huge impact I can make on the life of another.
 
 
My clay pot, by Julie Song
 
It was dawn when we first arrived in Bolivia. As we rode a taxi down the steep winding roads from El Alto, we saw the dim city lights in the valley of La Paz below, surrounded by misty fog and the breathtaking Andes mountains. And I just knew that what we came here for was going to mean a lot more than just providing speech services abroad. Everything just became so real. I could almost see the faces of the children we’d be working with, and was filled with a sense of hope and purpose of really making a difference in lives.
 
I volunteered for CEREFE, to where we’d have to take a taxi back up that steep winding road to El Alto every morning. It was physical education day for the class I was assigned to on my first day. My partner Annie and I just sat on a side bench against the wall and began observing the children. But not for long. The children started coming up to us and began introducing themselves, asking to know our names too. Soon after that, we were running around with them, through obstacle courses, under basketball hoops, and in a circle they made to play kickball. And amongst them was my very first client, Felix.
 
Felix was a 9 year old boy who was born with mild cerebral palsy, doe eyes and a shy smile. His teacher assigned him to me because he never spoke much in class and people could not understand what he said when he did speak. His voice was too soft and his articulations unclear. As I began working with him, I noticed that he did not understand abstract concepts, but understood concepts quite well when taught using actual tangible objects, making it a complete experience for him. We also worked on talking in “big” voices.
 
My last day, the teacher, Ms. Rosario, asked to join the final session. She had noticed that Felix was speaking more and was more active in class. She asked to learn what I had been doing, so that she could do the same with Felix even after I left, and use them with other children, as well.
 
She gave me a gift that Felix had made – a miniature clay pot – and thanked me as we hugged goodbye. It was a moment I’ll never forget, as I felt the sense of hope and purpose when I first arrived in Bolivia, become fully realized.
 
 
A mother's love, by Melissa Randazzo
 
I spent my mornings at Cerefe, where I worked with a class of teenagers and young adults with various types of disabilities. These students embodied the warmth and enthusiasm that encompasses the entire school community. I worked specifically with one 17 year-old girl, Catalina.
 
Catalina had brain damage due to lack of oxygen at birth and was functioning at a much lower level than the other students in the class. I will never forget how all the students would run to the door to hug Catalina when she arrived every morning and someone would always lead her by the hand to her seat. Her classmates would even wipe her nose and feed her a snack at recess. The love and affection the classmates demonstrated toward Catalina exemplify how the entire school community operated in a way to take care of each other.
 
Catalina’s mother, Ana, accompanied her to school every single day, and stayed on campus all day in case her daughter needed her. She is an incredibly dedicated mother, who taught her daughter to walk at 6 years old when the professionals she consulted failed to do so. Ana became an integral part of the Cerefe community, playing “mom” to Catalina’s classmates as well.
 
Ana was receptive to the possibility of using very simple AAC to give her the opportunity to express herself by requesting desired objects. We taught Ana how to help her begin to communicate by creating communication temptations and allowing her to choose a desired object from a field of two. Ana’s dedication to helping her daughter is just one example of the many parents in the Cerefe community eager to learn more about how to help their child. After our AAC presentation, a group of parents joined together to form a support group to share their experiences using AAC. Ana immediately stepped up as the leader of the group.
 
Although our time in Bolivia was very brief, judging by the devotion of parents like Ana, I know that this amazing community of students, families, and teachers will pull together to continue on with what we started.
 
 
Supervising in Bolivia, by Jenyffer Ruiz
 
In Bolivia I supervised the Teachers College students at CEREFE a center for medical and special education services in El Alto. I am quite familiar with aspects of Andean cultures as I was born in Quito, Ecuador and moved to New York when I was 17. My work in the the New York City Department of Education is with children with autism. As it turned out, there were a number of children with autism in CEREFE.
 
The people at CEREFE knew already of the focus on research and treatment for autism that is being done in the United States. The teachers and administrators wanted to learn all they could from us. They saw our time there as a chance to learn and improve the services they provided to these children. So, I was regularly asked to consult with teachers and families on specific children. We also gave a presentation on autism that was attended by parents many with their children, and teachers and administrators from CEREFE and from medical and educational centers throughout El Alto and La Paz. 
 
One day a teachers told me that she and the parents did not know how to manage the behavior of a 9 year old girl in her class. After spending some time interacting with this student and observing her, I met with the mother and the teacher and shared my thoughts and strategies with them. The mother and teacher were so and willing to learn and implement the strategies that I knew what I had to offer was really going to make a difference.
 
The experience of sharing my expertise with such committed and caring individuals was the best gift I have received in the 4 years of my professional life as a Speech Language Pathologist. I’ve never felt more effective, appreciated and trusted as a professional as I did at CEREFE