By Shana Haines, PhD
Of the countless experiences I had as a Peace Corps volunteer in Namassi, a village in the northeastern area of Cote d’Ivoire, this one continually surfaces in my memory: I have lived in Namassi for about a year and feel like I have a general understanding of the village. As I do every night, I am eating dinner with my village host, Ahmadou “Six” (pronounced, in French, “cease”) and, as usual, we are sitting at a card table set up under the one light bulb hanging in the middle of the dirt courtyard Six and his family share with his five brothers and their families. A little girl, maybe 3 years old, runs up, round face adorned with a brilliant smile, and hugs Six. He pulls her up onto his lap and feeds her with his own fingers. He talks to her enthusiastically, mirroring her smile. I have been here a year, and I think this must somehow be a daughter I have never met, the connection between the two of them is so strong. I interrupt Six to ask if the child is in his family. He looks at me like I am crazy… don’t I know who is in his family by now? “No!! She is not in my family.” Six is related to literally at least a third of the village; I can’t understand the relationship. “Who is this little girl?” I finally ask, perplexed. Six tells me that her name is Djenabu, and she “likes to be with me.” He says that she sometimes comes to sleep in his hut with his family. After this day, I see Djenabu almost daily, cooking with Six’s wife or playing in the courtyard, and realize that her presence adds to the family’s happiness. I ask about how her own family feels, aren’t they worried when she is not home with them? Six replies, “Oh no. She is just like that. She likes to be with my family and me. She prefers to sleep at our house and eat with us.” The freedom, the trust, the understanding of the individual child’s desires, the nurturing, the sharing, the acceptance, all while expecting (and receiving) respect for elders … What a difference from the way I had grown up! “She is just like that” runs completely contrary to my (delightful) childhood on the shores of Long Island Sound, where it was widely accepted that studying, lessons, and experiences take you from who you are to who you (or others) want you to be. I had heard, “It takes a village to raise a child;” through my experience with Six and Djenabu, I learned that it takes a village of empathetic and perceptive people to raise children who are accepted, nurtured, and valued for their strengths.
This memory surfaces repeatedly as I work with immigrants and refugees who are navigating American society and schools for the first time. The clash of cultures I felt as I sat in Six’s courtyard under the light bulb is miniscule in comparison to what newcomers experience continually. This difficult-to-explain phenomenon of cultural clash happens on so many levels, in almost every environment newcomers experience. School is not an exception; in fact, it might be one of the hardest areas of navigation for children as they often go at it alone.
As a teacher, I knew many students who became “Djenabu” to me. Soon after returning from the Peace Corps, I got to know one “Djenabu” at a school where I taught in New York City. Isaac was newly arrived from Cote d’Ivoire, and, although already a second grader, had never before attended school. He was placed in a remedial reading group with other 8-year-old English Language Learners, but he did not know the alphabet or understand school expectations like sitting at desks and eating in the lunchroom. His teacher (my colleague, who was otherwise a very effective teacher) had a negative view of him and his mother, stating that he never changed his clothes and his mom didn’t value literacy because they didn’t have any books in the home. School personnel perceived Isaac as a behavior problem who lacked academic and social skills. He was not given the support he needed, and he was labeled and punished for his perceived deficits. Though I never knew his village in Cote d’Ivoire, I imagined him running barefoot through town, beautiful smile adorning his face, as he pursued his interests and thrived in the nurturing of his many strengths. Over 10 years since I met him, I can still hear Isaac sobbing and see those huge, quizzical eyes fill with tears of loneliness, frustration, and exhaustion as I tutored him on the sidewalk in front of the crowded hair salon in Harlem where his mom braided hair. Oh those Little Critter books!
About four years later, I met another “Djenabu.” Coco was about 10 years old when she arrived in the US with her grandmother. Speaking not one word of English, the grandmother had brought her four granddaughters to the US from the Congo. In addition to learning about everything in the US (using a stove, comprehending the language, finding and taking public transportation, grocery shopping, currency, banking, etc.), the grandmother needed to navigate the school system. All of the granddaughters were kind, gentle, resilient, and interesting people. Although most did fairly well in school with the supports they received, Coco struggled significantly with reading and math. She loved sports and was a very attentive and dutiful granddaughter, but she faced criticism and ridicule at school as the letters and numbers swam together in her mind. She grew to hate school and dreaded attending. Eventually her grades slipped too low for her to continue playing basketball in middle school. Her grandmother accepted her, loved her for who she was, and did not understand the negative situation. She also did not advocate for her granddaughter to receive the supports that could help her find success; like Six had said about Djenabu,“she was just like that.” I learned so much from this family; one of these things was that a great divide can separate refugee and former refugee families from the schools their children attend, and family-professional partnership can foster student success and help bridge the divide.
Another “Djenabu” became the focus of my dissertation at KU. I conducted a case study of a 4 year-old boy who was under evaluation for a disability because he lacked communication, engagement and self-regulation skills. The boy, “Habib,” was born in the US to Somali parents. Attending Head Start as a four year old was the first time Habib had ever been without his parents. He did not speak in English or his native Somali, at home or at school, and he cried and ran out of the classroom several times a week during school. I saw that the family and teachers’ perspectives on the importance of intervening to directly foster Habib’s development of engagement and self-regulation skills contrasted greatly (please see Haines, Summers, Turnbull, Palmer, & Turnbull, 2015 for details on this study). At times during this case study and when I was conducting a similar study, family members of children with disabilities or, like Habib, at risk for disability, spoke to me about the difference between raising children in the US, where people are territorial, private, and stressed to succeed, and the more communal and accepting contexts in which they grew up. Parents spoke about learning how to self-regulate and engage when they were children in Africa by freely interacting with others in the protected freedom of their own village or, if they lived in a city, their extended family’s courtyard. In a small apartment in the suburbs of Kansas City, Habib was not benefitting from the natural learning opportunities inherent in his parents’ childhood in eastern Africa.
The beauty of acceptance and valuing all children for who they are can be lost when we get caught up in the fast-paced and high-stakes world of our education system. Accepting, nurturing, and valuing our students while also setting high expectations and providing responsive supports to enable them to reach goals is the challenge educators face, and those of us in teacher preparation need to help our students (future teachers) understand these goals through modeling them in our own teaching. Developing strong family-professional partnerships can help all families understand expectations for their children behaviorally and academically at school. These partnerships can also help educators understand expectations for their students behaviorally and academically at home. Assuming a posture of cultural reciprocity enables educators to learn from the families they serve; through partnership we can all seek out meeting and continue to learn from the Djenabus we meet.
I am an Assistant Professor in the College of Education and Social Services at the University of Vermont. I came to UVM in 2013 from the University of Kansas, where I studied Special Education, family-professional partnership, and disability policy and worked for the SWIFT Center. For seven years before moving to Kansas, I taught diverse elementary students in New York City and Portland, Maine. My experiences working in these contexts, especially with students who were not finding success at school, have driven me to try to make schools great places for all students. My research interests include understanding and improving the experience of refugee families and their children with the American school system, family-professional partnership, inclusive school reform, and innovative teacher education. In my free time, I love exploring Vermont with my husband and three young children, jogging, gardening, and sailing.
By Jennifer Ganz, PhD, BCBA-D
Humans engage in communication practically from birth. Beginning in the first few months, infants use eye gaze and begin taking turns making vocalizations, or sounds, with others in their environment. Babies use crying and fussy noises to get their parents to change their diapers and feed them. Toddlers use single words to entice their siblings to look at the toys they are playing with and point their fingers to show their dads the cereal they want on the shelf in the grocery aisle. Eventually, we learn to communicate complex ideas verbally and in writing, such as via Hawks Hopes. I would argue that communication, which is a basic human activity, should be considered a human right. Consider the percentage of the day you spend communicating with others. If you include speaking, writing (emails, Twitter posts, and whatever social media the younger generations are using these days), listening (podcasts, the news, National Public Radio), reading (how many hours do you spend reading blog posts or Facebook?), and nonverbal communication (giving that warning look to your significant other when he’s about to spill the beans to your relatives), you will notice that you spend more time engaging in communication than in most other activities.
Unfortunately, due to disability or illness, many people are not able to communicate, particularly via speech, effectively. In my early 20s, I began working with Boyd, a four-year-old boy with autism, in his home, helping teach him a number of things that he was not learning incidentally like his peers were. It quickly became clear that one of the main reasons he did not learn as easily as his friends was because he had difficulty understanding what others were communicating to him and communicating what he wanted himself. This made it difficult for his parents to participate in everyday activities that one would expect to be able to do with a preschooler. For example, Boyd was not able to participate in regular swim lessons with other four-year-olds because he did not understand when the instructor was telling him to imitate blowing bubbles and stay with the group and he could not communicate his fear to her and threw a tantrum instead. Going shopping at the mall often devolved into tantrums as well because he did not understand when his mother told him that they could buy a pretzel after they got him new shoes and he could not communicate that he was overwhelmed by the crowd.
When I was at KU, I volunteered for an organization that provided free respite care for adolescents and adults with disabilities. I remember adult brothers who had a muscle disease that resulted in the need for use of wheelchairs and that made their speech very difficult to understand. Both of the young men held jobs and appeared to be bright and interested in interacting with others. I noticed that others appeared to underestimate them and spoke to them as if they were much younger children. People became frustrated by the fact that neither had an effective means of communicating and were only able to speak with the one or two volunteers who were very familiar with them because no one else could understand them, making conversation impossible.
Much of my work has been with children and adults with autism spectrum disorder and developmental disabilities who also have “complex communication needs” (CCN). This means that they are not able to use conventional speech at a level that would be expected of their same-age peers. As described above, difficulty communicating impacts individuals with CCN and their loved ones in almost every daily activity, from choosing a recreational activity, to going out to eat, to working in a job of his or her choice. Unfortunately, an inability to communicate through speech frequently leads to challenging behaviors, such as tantrums, physical aggression, wandering off, or stealing. These behaviors serve as alternative means of communicating, but also serve to ostracize the individual and reduce access to opportunities, such as employment, recreation, housing, and other arenas necessary for eventual independent living. Further, these behaviors lead to increased stress for caregivers. Because the negative impacts of an inability to communicate can be so severe and pervasive, I would argue that providing such people with intensive interventions and tools to assist them in communicating across all settings should be considered a human right.
The population with whom I work includes people with autism and similar characteristics. Those for whom I am advocating require alternative means of communicating because they have CCN. That is, these individuals may be able to speak, but they typically use speech is a limited manner. For example, Amara, a young woman with autism, was able to verbally ask for crackers and yogurt, say no to indicate she did not want to do a particular task or eat applesauce, say hi when entering her classroom and when her father arrived to pick her up at the end of the school day, and she frequently repeated lines from her favorite Disney fairy movie. However, she could not engage in conversation and typically did not understand when asked a question or when someone made a statement outside of her routines. Although Amara could speak, she frequently became frustrated due to a lack of understanding what adults were saying or failure to get her point across. She was a good candidate for the use of interventions that would improve her ability to understand and communicate and tools to help her do so.
I implore those of you who work with, love, and care about individuals like those I have described above to advocate for the use of evidence-based, research-supported practices. These include the use of augmentative and alternative communication, functional communication training, visual schedules and other visual supports. In the section below, I have provided some research articles in support of these, as well as resources for researching evidence-based practices for people with autism. Finally, I would warn against implementation of debunked and dangerous communication “strategies,” such as facilitated communication, supported typing, and rapid prompting, which have been erroneously referred to as augmentative and alternative communication, but which have been responsible for false abuse accusations and have been strongly recommended against by numerous professional organizations. In particular, if you are a parent or family member of a person with autism and other significant disabilities, you know him/her best and are his/her best advocate and you and your loved one are entitled to support and the tools you need to improve your and their quality of life.
Resources and Research
American Psychological Association Position Statement on Facilitated Communication: http://www.apa.org/research/action/facilitated.aspx
American Speech-Language-Hearing Association Position Statement on Facilitated Communication: http://www.asha.org/policy/PS1995-00089/
Autism Internet Modules: http://www.autisminternetmodules.org/
Ganz, J. B. (2014). Aided augmentative and alternative communication for people with ASD. In J. Matson (series ed.), Autism and Child Psychopathology Series. New York, NY: Springer. doi: 10.1007/978-1-4939-0814-1
Ganz, J. B., Earles-Vollrath, T. L., Heath, A. K., Parker, R., Rispoli, M. J., & Duran, J. (2012). A meta-analysis of single case research studies on aided augmentative and alternative communication systems with individuals with autism spectrum disorders. Journal of Autism and Developmental Disorders, 42, 60-74. doi: 10.1007/s10803-011-1212-2 http://hdl.handle.net/1969.1/152916
Ganz, J. B., & Simpson, R. L. (2004). Effects on communicative requesting and speech development of the Picture Exchange Communication System in children with characteristics of autism. Journal of Autism and Developmental Disorders, 34, 395-409.
Heath, A. K., Ganz, J. B., Parker, R., Burke, M., & Ninci, J. (2015). A meta-analytic review of functional communication training across mode of communication, age, and disability. Review Journal of Autism and Developmental Disorders, 2, 155-166. doi: 10.1007/s40489-014-0044-3
International Society for Augmentative and Alternative Communication Position Statement on Facilitated Communication: http://informahealthcare.com/doi/full/10.3109/07434618.2014.971492
National Autism Center, National Standards Project: http://www.nationalautismcenter.org/
National Professional Development Center on Autism Spectrum Disorders: http://autismpdc.fpg.unc.edu/
Jeni Ganz, Ph.D., BCBA-D, completed her bachelor’s and Master’s degrees at Trinity University in San Antonio, Texas. Upon graduating, she took a summer job as a pool manager and lifeguard in Humble, Texas until she was hired as a teacher at Shadow Forest Elementary in Humble Independent School District. In Humble ISD, she worked as a 4th and 5th grade teacher, then was asked to open a class for preschool and kindergarteners with autism spectrum disorders and similar disabilities. She fell in love, particularly with kiddos who had difficulty communicating. After entering the doctoral program at the University of Kansas, under the advisement of Dr. Rich Simpson, Jeni decided to conduct research on the effects of augmentative and alternative communication with children with autism and other developmental disabilities. She has continued with this research agenda, first for 6 years at the University of Texas at San Antonio, and now at Texas A&M University, where she is currently a Professor of Special Education. In addition to spending time with her adolescent and preteen children (when they deign to spend time with her), Jeni enjoys hiking, running, swimming, and sitting on the rocking chair on her front porch listening to the cow lowing.