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When most people think of Rwanda, they cannot help but remember the country’s tragic history. In a period of 100 days in 1994, over a million Tutsi were killed in what is considered one of the worst genocides of the 20th century. Today, however, Rwanda is better thought of as a country of warm, welcoming people and diverse natural beauty. Known as the land of a thousand hills, the mountainous central African country is located just 75 miles south of the equator and boasts dense, equatorial forests in the northwest and a tropical savannah in the east, with five volcanoes, 23 lakes and numerous rivers (Government of Rwanda, 2020).
One of the unfortunate consequences of the violence during the 1994 genocide was an increased prevalence of people with disabilities in Rwanda, a fact that has helped to shape a strong disability movement within the country (Njelesani et al., 2018). The government of Rwanda is now committed to protecting the rights of persons with disabilities, especially the right to education. This is reflected in the Special Needs and Inclusive Education Policy (2018), which counts among its priorities the equitable access to education for students with special educational needs in mainstream and special schools.
The promise of providing an equitable education to students with disabilities is not simple. The 2014 Rwandan school census estimated that around 24,862 children with disabilities were attending preschool, primary and lower secondary schools. This represents less than one-percent of all students enrolled at that time (UNICEF / Education Development Trust, 2016). According to the 2011 World Health Organization’s World Report on Disability, approximately 5.1% of children between birth and 14 years of age live with some type of disability. It is likely, therefore, that many children attending school in Rwanda have unidentified disabilities. This is further supported by the fact that it is often teachers who fill out the school census and the identification of children with disabilities tends to focus on those readily noticeable impairments.
To help Rwandan teachers meet the needs of all their students, including those who may have special educational needs but who have not been formally identified as having disabilities, Inclusive Development Partners (IDP) has partnered with the Soma Umenye project (funded by USAID and led by Chemonics International) on an inclusive education pilot.
In the period from January to March, 2020, the team provided training and follow-up support to 25 first grade teachers, head teachers, and sector education inspectors, on Universal Design For Learning (UDL) strategies that have been specifically considered for use in the unique context of Rwandan schools.
UDL is based on the premise that by offering learners flexibility in the way information is presented (multiple means of representation), the way learners engage with materials (multiple means of engagement), and the ways learners express their understanding (multiple means of action and expression), teachers can better prepare for the variability in their students that is natural in human development (Meyer et al., 2014). A further advantage of UDL is that it does not rely upon specific technologies or resources. This is important for Rwandan schools, where many classrooms do not always have consistent access to electricity and material resources are limited to those objects teachers can readily find in their environment.
What does UDL look like in the Rwandan classroom?
Engagement: To keep students engaged, teachers tried a number of different strategies, including using a visual schedule at the beginning of class to help students know the expectations for the lesson, singing the alphabet song while clapping or pointing at the letters they have already learned, and implementing classroom rewards wherein the teacher would dance or sing for the students when they successfully completed their work.
Representation: To provide multiple means of representation, teachers sometimes made models of letters out of sticks or folded grasses that students could touch, brought in household objects to act out the events of a story (such as dirty vegetables and a bucket to demonstrate washing), or made a game of mixed syllable cards for students to build words out of.
Action/Expression: In order to provide students with flexibility when demonstrating their understanding, teachers would ask students to walk around the room and point to objects that began with a target letter sound, match words with their pictures on the chalkboard, or work in pairs to share ideas.
How do these activities differ from good teaching?
Many of the UDL strategies introduced during this project may seem like “just good teaching”. Traditional teaching in Rwanda, however, relies heavily on a model in which students, seated in rows, follow along in unison as a teacher writes on a chalkboard. This is a legacy that the Soma Umenye project has attempted to address more generally, through the provision of scripted lesson plans that build in evidence-based literacy strategies and student-centered methods. Adding to this innovation, the UDL strategies observed in the early months of the pilot project in Rwanda represent a new way of thinking about how students engage with learning. A major emphasis across these strategies is the increased participation of students in the learning process, whether it be through more hands-on learning opportunities or small groups where the students support one another. As one teacher put it:
“Before UDL, I didn’t know what to do with these students (students with disabilities); we just brought them in, but we didn’t ask them questions or anything. Now I know I can support these students. UDL has made all learners our friends.”
Njelesani, J., Siegel, J., & Ullrich, E. (2018). Realization of the rights of persons with disabilities in Rwanda. PLoS ONE, 13(5), E0196347.
Meyer, A., Rose, D. H., & Gordon, D. T. (2014). Universal design for learning: Theory and practice. CAST Professional Publishing.
Republic of Rwanda. (2020). Welcome to Rwanda. Republic of Rwanda. https://www.gov.rw/
Republic of Rwanda. (2018). Revised special needs and inclusive education policy. Ministry of Education. https://mineduc.gov.rw/fileadmin/user_upload/pdf_files/SNE_Policy__4.10.2018.pdf
UNICEF / Education Development Trust (2016). A study on children with disabilities and their right to education: Republic of Rwanda. https://www.unicef.org/esaro/Rwanda-children-with-disabilities-UNICEF-EDT-2016.pdf
World Health Organization. (2011). World report on disability 2011. World Health Organization. https://www.who.int
Nicholas Hoekstra is a visually impaired martial artist who somehow found himself pursuing a PhD in special education. After several years working in international development in Ecuador, as an advisor on inclusion, and then with the World Intellectual Property Organization’s Accessible Books Consortium, Nick became interested in strategies for inclusive education in low-income and low-resource environments. He has worked on projects in over 20 developing and least developed countries in Africa, Asia and Latin America.
The 2019 Cohort members were asked to provide a word(s) that summed up their experience, a few sentences and a symbolic picture!
This year was not what any of us expected, but I still find myself really grateful. I’m grateful for my cohort and the community we formed, grateful to my research team for providing me with so many new experiences, grateful to the KU Special Education Department staff for their wisdom and guidance, and grateful that I chose KU over other opportunities. In a time where I should be missing family back home in NM, I feel like I’ve found one here at KU as well. So very thankful for this experience and excited for the next three years, hopefully not in quarantine.
My first year in the doctoral program taught me a lot about balance. Maintaining an equal balance between work, family, scholarship, and other life hiccups (like a global pandemic) wasn’t feasible for me. Some days I just had to be a parent and nothing more. Other days I killed it as a student. Often, there was no way to predict which version of myself I would have to be that day. My advisor and other faculty in the program really helped me accept this ambiguity, and gave me new skills for managing it; skills like setting reasonable expectations, creating milestones marking progress towards long-term goals, and prioritizing/re-prioritizing when needed. The people in this program care about you. They know you can be successful in the program, but they want you be successful in all aspects of your life.
Starting my doctoral program at KU challenged me intellectually in ways I have never been challenged before. I am most grateful for the support from my advisor, family, cohorts, faculties, and friends who helped me get through every difficult period. My journey will be continued and I anticipate as much excitement as I have experienced in my first year.
Although the year has been full of change and unprecedented experiences and events, it has come with a lot of joy as well. From experiencing the charm of Lawrence, to making new friends and being challenged in my thinking, I am truly grateful for this experience and for the support from my peers, my instructors, and my family.
Stepping into a new world can make you feel like falling through a rabbit hole. But our cohorts and professors provided me the perfect support and enlarged my world view. I am counting the days until I get back to our lively campus again.
It was just about four AM on a warm August morning. I just landed in Kansas on my first visit here. My phone was discharged (dead), and I had no clue if the cab service I booked had shown up. This is because I was seven hours late. My flight which was scheduled to land at seven pm had now made it at four AM. Suddenly, I felt a tap on my shoulder and a man told me he was my cab driver. That was my welcome to the Midwest and Kansas. This driver had waited for me for over seven hours because he said, he couldn’t have left me alone. He also took calls from my family and ensured them that he was there on time to help me when my flight landed. This might be surprising and different, but I have always felt that if I believed, it happened.
My experiences in coming to the University of Kansas has been a magical ride that I can only picture as being a long and beautiful story. In late September of 2017, I was unhappy that in spite of having some of the best laws on enabling people with disabilities, there was a wide gap in implementation. I had already decided to change my doctoral program and work towards building a career around disability and challenges that students face. Having lost my vision at just two, I have always been comfortable as to who I am. Speaking to Dr. Skrtic, at that time was a revelation. We spoke about violation of policy, the difference between the letter and spirit of ADA as well as the implementation challenges that still remained in the twenty first century.
I have always faced challenges at school and at work. Back home, a policy barely exists to assist or help people with identified disabilities. It is the family who is responsible for the child. My parents were well educated and very open to experiences. They brought me up to the best of their abilities. I remember my father trying to explain the meaning of a triangle early in my middle school years. The elephant in the room was however wider acceptance. Like here in America, the problem was the mindset of the wider society. While some people accepted, most others did not. What however I found different in America was the laws already enacted to protect the rights of people with disabilities.
I have found that more people who participate in creating a system, the better it works. It is people who enact and implement policy that matter. MY road to success has been paved by teachers, leaders, professionals, university faculty and friends who have had faith and believed. The biggest thing that I have been allowed to do is to participate on an even field. This has been with the objective: I can do things differently and do them well.
Back in India when I was just one, I was diagnosed with a tumor. Over the next two years, my parents fought to cure me of Leukemia. There were many who stood with us, but many also felt that living with permanent blindness meant I had no advantages in the world. In a country where education is valued and families give up everything so that their child can study, my parents had to struggle to find schools for me. It was a challenge in explaining to teachers and school leaders that I was no different from the average five-year-old.
Something I learned from my psychology teacher when I was 15. She said “unless I let you do things on your own, how will you understand your limits and cross them? “
“Unless I let you do things on your own, how will you understand your limits and cross them?”
When we did find the teachers who allowed me to participate , it was an experience, as it is here in Kansas. I have found that when people decide to participate to see change, we start seeing a difference. System wide change requires us to create a structure of idea of participation that influences and touches many.
Many people come up to me and ask how I live and manage so far from home. My only answer is that I am at home. I am not living away from it. My support systems are stronger here than they ever were. I have met some extraordinary people in my journey. These aren’t people whose names are in any textbook or hall of fame. They are simple folk who have removed prejudice and accepted social equity as a personal philosophy. Take the motel owner I met on my first day here. I stepped out and knocked on the door at five AM. My debit card did not work, and I was in danger of not finding an accommodation. Looking at me, he asked me to first sleep and freshen up before we decided what to do. Historically, powerful objectives have been achieved through a movement. A social movement consisting of people who have a message and then take this message into society. I feel that if we are to enrich ourselves, we need to be a part of this movement to instill belief in others. When I was looking for changing my job at the end of 2015, senior executives asked me how I could hold down a difficult position if I had a disability. These were executives from powerful fortune 500 organizations. I attended over 50 interviews with not a single successful placement. These are all multinationals with headquarters in America and the U.S. It is more important to do something rather than just having a policy on diversity. It is important to let people participate in the process to build a system of acceptance.
Suman Rath is a second year doctoral student in the department of special education working within Policy and Systems change. Prior to this, he has worked within the corporate sector particularly human resources, teaching and the nonprofits. His experiences include implementation, policy formulation and building systems for change. In over 5 years of experience he has created and structured change initiatives across a range of sectors including education and schools.
In describing his most memorable student, Richard Whelan said, “…I had the opportunity to work with the Space Child. He believed he was a general in outer space who commanded countless space ships. He sailed to faraway regions of space, destroyed stars, and invaded numerous solar systems. Space Child was written up in the Bulletin of the Menninger Clinic in 1952. On cold winter nights, this youngster and I would go outside and, using a telescope he built, chart the heavens so he could have new conquests. His knowledge of the stars was accurate. I knew this because I was a lab assistant in a university astronomy class (a good opportunity to meet girls…or young women in 1951). As I have reflected about that star gazing though, I have often wondered aloud which of us needed long-term treatment. However, I was assured by the child’s therapist that folie a deux (a shared or transmitted psychosis) was not a possibility.”
Richard (Dick) Whelan was a gifted educator, mentor, and a pioneer in the education of children withemotional and behavioral disorders (EBD). His earliest professional experiences in the 1950s were at the Children’s Hospital (Southard School) of the Menninger Clinic in Topeka, Kansas where he was a recreational therapist, teacher, and director of education.
In 1962, Dr. Whelan began his career at the University of Kansas (KU), where he had academic appointments in Special Education, Psychiatry, and Pediatrics and was the Ralph L. Smith Distinguished Professor of Child Development. He served as department chair, Dean of the School of Education, and director of interdisciplinary clinical research programs at the KU Medical Center.
Whelan also directed several federal projects that supported leadership development in special education. In the mid-1970s – a critical time in the development of special education and before the passage of the Education for All Handicapped Children Act of 1975 – he served in Washington, D.C. as Director of Personnel Preparation in the Bureau ofEducation of the Handicapped, the precursor to the Office of Special Education Programs. After retiring from KU in 2000, Whelan continued to work as aprogram consultant, special education compliance investigator, mediator, and due process hearing officer until his death on January 9, 2015. Whelan self-identified as a “humanistic behaviorist” who drew from multiple theoretical perspectives and approaches to educate students with EBD. He was instrumental in thedevelopment of special education as we know it today. In 1986, he was honored as the first recipient of MSLBD’s Outstanding Leadership Award.
The following account Dr. Whelan’s “most memorable student” illustrates his ability to draw from multiple conceptual models to understand and design treatments. No doubt his eclectic perspective was influenced by his early experiences at the psychodynamically-oriented Menninger Clinic and his later experiences at KU, where several of his colleagues conducted pioneering research in applied behavior analysis (ABA).
Whelan’s description of Robby recognizes that his aberrant behaviors reflected underlying disturbed emotions (intrapsychic perspective) and that efforts to change Robby’s behavior improved those underlying emotions (behavioral perspective).
It’s also apparent that Whelan understood Robby in the context of his interactions with larger ecosystems – the clinical settings of the Menninger Foundation and the public high school (ecological perspective). Dr. Whelan’s story of Bobby follows. 1
The Menninger Clinic
In 1925, Dr. Charles Menninger founded The Menninger Sanitarium (later Menninger Foundation and Clinic) in Topeka, Kansas. Southard School for Children opened the following year and offered an internationally recognized residential treatment program for children and adolescents, including an educational program. In the 1930s, Menninger expanded its programs to train mental health professionals including psychiatrists and psychologists; by the 1940s, Menninger’s School of Psychiatry had become the largest psychiatric training center in the United States.
Charles’ sons, Karl and William Menninger, succeeded him and together they had a huge influence on psychiatric practice, professional training, and public awareness and understanding of mental illness. Karl Menninger was author of several best-selling books, including The Human Mind (1930), Man Against Himself (1938), Love Against Hate (1942), Theory of Psychoanalytic Technique (1958), The Crime of Punishment (1968), and Whatever Became of Sin? (1973). His brother, Will, developed a system of hospital treatment known as “milieu therapy” which involved patients’ total environment in their treatment. Will also led a national effort to reform state sanitariums. In 1951, he appeared on Time Magazine’s cover as “Psychiatry’s U.S. Sales Manager.”
In 2004, the Menninger Foundation programs moved from Topeka to Houston, Texas where it is now affiliated with the Baylor College of Medicine and the Methodist Hospital. The move resulted from several factors: treatment models moving away from longer- term residential treatment to shorter, out-patient approaches; the movement away from intrapsychic to pharmacological and behavioral treatment approaches; and, most notably, health insurance companies’ increasingly restrictive reimbursement practices for mental health treatment. Menninger’s could no longer afford to provide costly residential, milieu therapy interventions.
When I was invited to describe my most memorable student, I found it difficult to select a single case because there were so many who were not only memorable, but who also helped me find solutions to complex problems which confronted me while working in our profession.
I selected Robby. According the 1952 Diagnostic and Statistical Manual (DSM) of the American Psychiatric Association, Robby’s diagnosis was “schizophrenic reaction, hebephrenic type.” In today’s DSM IV, it would be called “disorganized type.” Both labels addressed shallow, inappropriate affect, unpredictable giggling, silly behavior and mannerisms, and delusions. At first impression, Robby was a mechanical boy, but only somewhat comparable to “Joey, a mechanical boy” that Bruno Bettelheim wrote about in the Scientific American in March, 1959. 2
I was selected to introduce Robby to the residential setting at the Menninger Foundation. I waited on the front porch of the huge Victorian mansion which served as the residence on the campus known as Southard School. My first impression was of a big, goofy-looking teenage boy with a bed sheet over his head and shoulders. The sheet was tucked into a wide western belt so tightly cinched that flesh overlapped the top and bottom. And he had on a set of oversized aviator sunglasses. He refused my suggestion to see his room. Instead we headed to a big, dark, and dusty basement to locate the electrical and mechanical equipment. You see, Robby believedhe derived his power from those objects. And he feared that if he lost control of that power, he would explode. Hence, he used the cinch belt to hold the power in for his use as needed.
After a few weeks at Southard, Robby shed the sheet and sunglasses because the recreational therapists, child care workers in today’s parlance, had helped him learn that he was in a safe place– one that did not punish the outward expression of the inward pain he was obviously feeling. His belt remained tightly cinched, but we knew that when the belt moved to a new, less restrictive hold he was making progress. That was a clear measure of his increased internal control.
Robby was good natured and giggled often unless frustrated or thwarted by others. His voice was wooden, lacking in affect. He mostly started conversations by saying something like, “Oh yeah, Dick Whelan!” followed by a question or a statement like “What happens when the fuse blows?” I usually replied something like, “You and I will go to the basement and replace the fuse.” This caused gales of giggles – Robby’s, not mine. Robby usually had a big smile on his face, but while looking in a mirror, he would often smile and cry at the same time – a distressing sight forsure.
Robby was intellectually capable in math and science, and I taught him advanced algebra. His computational skills were errorless, but like many students he found word problems difficult. While solving a problem, he shook his body up and down, making noises that mimicked the sound of a Monroe or Friden mechanical statistical calculator. (Those of you old enough to have used those will know what I am talking about.) Robby’s vocabulary was advanced, but his social skills were terrible. He blurted out words that did not fit the context and then collapsed in fits of giggles because he thought his comments were funny. For example,when discussing a story about President Taft, he said, “Oh yeah, he has a fat butt!”
One clear memory of Robby goes back to a hot day in summer school, and he was sweating profusely while solving a mathematical problem. He said, “Oh yeah, Dick Whelan, I am going to make an air conditioner tonight and bring it to school.” I said, “Robby that is great!” although my private thought was that he was having an episode of grandiosity, a characteristic of his diagnosis. Sure enough, the next day, Robby proved me wrong by showing up with a type of air conditioner – a small fan with a bowl of ice. It worked for a few minutes, and Robby just beamed because of his invention. However, reality soon set in and we had a great lesson about adding more humidity to the already humid air. Such was the curriculum and teaching approach in a psychoanalytic center!
Robby taught me that no matter the diagnosis or prognosis, each child deserves our best. Robby made great progress, even though the last time I checked many years ago, he was not on the list of NASA astronauts.
My retirement job qualifies me for a cubicle, which is great because it allows me to slide my chair to whatever I need. On my wall I placed a sign with big print saying, “Don’t believe everything you think!” This comes from my time with Robby. I initially believed he would be able to function with general educationpeers. My colleagues warned me not to have such delusional thoughts, but I decided to explore that idea. After several visitsmto a local high school and conversations with the high school staff (there was no special education in those days), Robby’s treatment team finally gave me the green light, so I enrolled Robby in a general class schedule including physics. He had no aide, no IEP, or any supplementary aids and services.
He was expected to meet class requirements, homework included. Of course, I checked with Robby’s teachers every few days. He did well, mostly because he held in some of his impulses.
We worked on social behaviors and I tried to teach him that not every thought needs to beexpressed. So, he held in those impulses until he returned to the residence where he felt comfortable enough to show symptomatic behaviors associated with his diagnosis. As he recorded multiple successes as a somewhat atypical high school student, the frequency of those behaviors decreased. During school hours Robby presented himself as the good natured, goofy boy that hewas. His peers liked him, probably because he was different in ways that did not scare them. And in hindsight, I believe that his peers watched over him.
One report from Robby’s physics teacher that has stuck in my long-term memory concerned a class discussion of absolute zero. The teacher asked Robby to describe absolute zero. Robby, being Robby, said this “Oh Yeah, that is when it’s cold enough to freeze your buns off” (giggle, giggle). So, that’s it. That is my story about Robby.
. . .
Whelan was one of the first persons interviewed by MSLBD’s Janus Oral History Project. His interview was wide-ranging, and he addressed many issues we continue to face today. What follows are a few excerpts from that interview.
Janus: How do you visualize the current state of the field in meeting the needs of students whohave emotional or behavioral disorders?
Whelan: I don’t think we have enough options in the schools. It’s difficult, given the schedules of our counselors and school psychologists to plan individual and group counseling which could address the needs of our children. Our teachers, in many instances, have caseloads that preclude planning group sessions to identify and deal with conflict in positive ways such as Nicholas Long’s work at the Rose School. When coping with adolescents who have severe problems, extra group session help is even more important. Adolescents, even those with severe mental disabilities, are not usually dangerous to others because they tend to leave a stressful conflict situation, unless we corner or otherwise challenge them. Those are not very good tactics because the end result could produce injuries.
But the teachers, from my point of view, feel frustrated that they are not able to provide more therapeutic learning experiences. The mental health centers are overwhelmed with family and individual problems. Juvenile justice centers, while helpful, are confronted with similar problems.
Historically, the children in our society have not been at the top of the agenda to address mental disorders, for whatever reason. Of course, when that happens, that’s disappointing. Prevention, as we know, doesrequire costly resources but over time that investment is recovered several times over. It’s hard to convince people to put that initial expenditure out there. I’m disappointed that we haven’t gone further into early identification and prevention as Eli Bower wanted us to do from the 1950s. It just didn’t happen, much to the disappointment of many in our field.
The other agenda item we’re still struggling with is the meaning of the least restrictive environment (LRE). When I am asked the LRE question, I may reply: “The fact that we might find a child in a general education classroom all day long with a para-educator teaching the child one-to-one is not the LRE in spirit or fact.”
But I am optimistic about the future, and I hope more and more people enter the field. In the 1960’s, when P.L. 88-164 passed, our field grew from infancy through adolescence to the maturity – with warts and other ailments of aging professions – it has today. We had many students enter the field because they were very interested in teaching and a career of service to others.Some came to EBD because they had family members struggling with a mental disorder and they wanted to understand and help them and others.
In terms of teacher education for educators of children with EBD, I know that Kansas has been criticized because it requires a general teacher education license prior to an endorsement to teach children with EBD. In my view, that general background is foundational for the knowledge and skills to be successful in our field. I also believe that a broad liberal arts education is extremely important for success in our field because it gives us an interdisciplinary perspective so important for life-long learning and doing. When new teachers get several years of experience in a general education setting, they’re going to encounter youngsters with emotional or behavioral disorders, and because of their general education background may adapt their instruction and management plan to meet their needs. On the other hand, the children’s many complex needs may motivate them to enter our field, and that is good news.
My longtime friend and colleague, Pat Gallagher, referred to this phenomenon as “general to specific to general.” This phrase contains few words, but conveys a wise message. It tells us that it is important to be an effective teacher of general education students before we learn the specific knowledge and skills to understand and teach students with EBD. Only then will we come to know that EBD understandings and effective teaching strategies are equally applicable in the general education setting. Think of the prevention and early intervention strategies that can be used as alternatives to EBD classification and special education placement. If only such a practice were more wide spread!
Janus: What is your advice for practitioners entering the field?
Whelan: There are obviously very resilient teachers just as there are very resilient children. What’s amazing to me is that some children come through aversive experiences and still remain very productive, forgiving, and so on and so forth. As I recall, the one common thing that the resilient youngsters have is a mentor – a significant adult who helps them cope with life’s barriers and hurts; I believe that’s true with teachers too. If teachers go into our field with the right motivation and knowing that it won’t be grand and glorious every day, they will realize there will be times when they are so angry at the children that they can hardly stand it. But, they will also realize that families, parents, and children, are extremely gratefulfor their efforts and show that in many ways. I certainly found it to be worth the effort.
Dick Whelan recognized the necessity of both “knowing and doing.” And, he often observed that children are our best teachers. He said, “They will let you know if you are teaching correctly, and if you truly understand the message in their words and other behaviors.”
Jim Teagarden, Associate Professor, Kansas State University, firstname.lastname@example.org
Robert H. Zabel, Professor Emeritus, Kansas State University, email@example.com
Reece Peterson, Professor Emeritus, University of Nebraska, firstname.lastname@example.org
1 This is based upon a video recording which Whelan completed as a part of MSLBD’s educator stories of most memorable students (https://archive.org/details/RichardWhelan343), and an edited tran- script of a videotaped conversation with Dr. Richard Whelan conduct- ed by MSLBD’s Janus project (https://archive.org/details/RichardWhel- ansThoughts) which later appeared in Intervention in School and Clinic (Kaff, M. S., Teagarden, J., & Zabel, R., 2011, 46(3), 184-189). Portions of this interview are reprinted with permission.
2 “Joey, a Mechanical Boy” was one of several case studies shared by Bruno Bettelheim in the 1950s regarding his work at the Orthogenic School at the University of Chicago. According to Bettelheim, Joey did not communicate directly with others and believed he was a mechanical robot. He drew images of houses, vehicles, and machines and could fall asleep only after connecting himself toimaginary andreal “machines” which he believed sustained him. At that time before autism was recognized as a syndrome, Bettelheim, who was trained in Freudian psychotherapy, considered Joey schizophrenic. Today Joey might be diagnosed as autistic. Many years later, Bettelheim became very controversial for his views regarding the possible causes of autism and other issues. The “Joey the Mechanical Boy” case can be found in Bettelheim, B. (1959). Joey: A “mechanical boy,” Scientific Ameri- can, 200, 116-127. (Republished in Bettelheim, B. (1967). The empty fortress. New York: The Free Press.)
Used with permission of the Midwest Symposium for Leadership in Behavior Disorder mslbd.org and the editors of ReThinking Behavior https://www.pageturnpro.com/Midwest-Symposium-for-Leadership-in-Behavior-Disorders/93369-ReThinking-Behavior-Winter-2020/flex.html#page/1
It’s the time of the year when anticipation runs high…
Classrooms are dynamic places filled with students and teachers with a variety of preferences, opinions, goals, and expectations for what to do at school and how to interact with each other. Sometimes when the expectations of individuals do not align, or when an individual may not have acquired the skills necessary to meet the class expectations, challenging behavior can occur.
Challenging behavior is defined as “any repeated pattern of behavior…that interferes with or is at risk of interfering with the child’s optimal learning or engagement in prosocial interactions with peers and adults” (Smith & Fox, 2003, p. 6).
The identification of challenging behavior is contingent on the perceptions of “expected behavior” by the adult, which can be influenced by individualbiases and beliefs.
Sometimes challenging behavior looks like a student failing to follow a task direction; other times it can appear as unsafe behaviors such as physical aggression or property destruction. The identification of challenging behavior is contingent on the perceptions of “expected behavior” by the adult, which can be influenced by individual biases and beliefs. These individual biases and beliefs can also impact how teachers perceive or identify challenging behavior based on a student’s gender identity, race/ethnicity, language status, sexual orientation, socioeconomic status, or disability status. A teacher’s own preferences can also impact whether or not a behavior is considered challenging such as preferences about student positioning at desks (e.g., standing, sitting, kneeling). While I personally don’t mind if a student is standing, sitting, or kneeling at their desk as long as they stay in their personal space, another teacher may prefer students to stay seated in their chairs.
The topography (form-what it looks like), frequency (how often), and intensity (degree of escalation or likelihood of injury or harm) also define challenging behaviors. For example, a student may rip books (topography) when given a math book to read if it is provided at the introduction of a new math concept. New math concepts are introduced less frequently than a daily activity and ripping books, although likely to become costly for the teacher, is a low intensity behavior that does not result in harm to the student or others.
Regardless of the topography, frequency, or intensity of challenging behavior, there are a few key things to remember when supporting a student engaging in challenging behavior.
1. Stay calm; your reactions influence those around you.
Students will rely on you to stay calm and support them as they (or others in the class) engage in challenging behavior. Staying calm will also support you in keeping a clear head to make decisions in your classroom that support all individuals present in the environment.
2. Define and label the behavior, rather than the child.
Children and students are humans first, regardless of the behaviors they may present in the classroom. Rather than defining a child or student as aggressive, angry, noncompliant, or lazy, consider only descriptively defining the behaviors you see. For example, you could state a child balls their fists at their sides when asked to share materials with others at the table and screams “I don’t want to” when prompted to provide a material to a peer. Descriptions of what the challenging behavior looks like and the contexts under which it occurs will provide more information for you and your team/caretaker(s) as you plan to support a student. Furthermore, challenging behavior is not part of an individual’s identity, so avoiding describing it as such will support us in remembering students are humans deserving of dignity and respect, regardless of the behaviors they may or may not exhibit at school.
3. We’re not all perfect and making mistakes is a part of life.
We all screw up and make choices or engage in behaviors that others perceive as challenging. Students and children deserve the grace to not be perfect all the time. Teaching students strategies for taking space, de-escalating, recovering, and returning to work or social situations will be critical for their success as humans. Identify when you are feeling frustrated or angry and model those strategies for students, as well as explicitly teaching them, and reinforce and praise students for displaying strategies or recovering after a frustrating event in the classroom.
4. Everyone’s doing the best they can with what they have.
If a student is engaging in frequent or intense challenging behavior, remind yourself they’d be displaying different behaviors if they had the skills to use them in that situation. No one wants to be in crisis all day long; empathy and compassion are important things to remember, even when a student is running from work tasks in the classroom. Although these traits won’t end up teaching the student new skills or behaviors to use instead of the challenging behavior, it will help decrease the likelihood of you burning out or responding to the student in an escalated tone of voice or aggressive manner which would likely only make the situation worse.
If it’s difficult to remember tips 3 and 4, our own personal beliefs or biases may be impacting our assessment of or reactions to a student’s challenging behavior. Teaming and collaboration are excellent ways to assess if our own personal biases or beliefs may be contributing to identifying or supporting a student with challenging behavior so others can evaluate the child’s needs and strengths, classroom environment, and our needs and strengths as a teacher.
5. Challenging behavior is communication.
Ask yourself what the student may be communicating—all behavior is communication. Perhaps a student calls a peer names only when a student is asked to share materials during a group activity such as a science experiment. Name calling then results in the student getting to work alone as they are removed from peers. If calling peers names consistently results in the student getting to complete tasks independently, the student may be engaging in the challenging behavior to work alone. Teaching the student to ask to work alone, providing choices (e.g., choosing partners), or providing opportunities to work in groups or alone, may eliminate this challenging behavior. Collecting data on the environmental and situational contexts before and after challenging behavior can provide you further information about what the student may be communicating via challenging behavior. This information can guide you to feasible strategies to decrease the likelihood of challenging behavior and provide the student access to what they were communicating they wanted or preferred in a particular context.
6. Environmental changes can be easily made.
Sometimes the classroom environment or activity arrangement can be the trigger for challenging behavior to occur. As mentioned previously, collecting data on the contexts and environmental variables under which challenging behavior is likely to occur, as well as the events that occur after challenging behavior, can provide information about easy environmental changes that may decrease the likelihood of challenging behavior and increase the likelihood of prosocial behaviors. Low effort strategies such as providing a student a schedule for the day or a checklist of steps of an activity, or even attending more to prosocial and expected behaviors than challenging behaviors, may be enough to decrease the frequency or intensity of challenging behaviors.
7. It’s possible the student does not have the skill required to be successful.
It’s a great idea to always explicitly teach (and re-teach) expected behaviors in the classroom rather than assuming all students know what to do during an activity or routine—even if you know you’ve taught the behaviors earlier in the school year. Sometimes students engage in challenging behavior because it’s been the only successful way to interact and gain desired outcomes, or they do not know the expected behaviors.
It’s best to always teach and re-teach the expected behaviors so students gain the skills required to be successful. Then, if the student is not displaying the skill you have data to indicate they have mastered, you can have a conversation about the presence of a performance deficit. If a student has a performance deficit (you have data to support the student has the skill, but they’re just not using it), then strategies from #6 should be implemented.
8. We are experts in teaching—that includes teaching expected behaviors.
We are teachers. We know how to teach social studies or music or reading. We teach expected behaviors the same way: explicitly name them, describe the conditions under which they should occur, model the behavior, provide examples and non-examples, create opportunities for guided practice with explicit feedback and more modeling if needed, and create opportunities for independent practice, with explicit feedback on what’s going well using behavior specific praise and providing redirection or reteaching when necessary. It doesn’t take a special degree or certification to explicitly teach expected behaviors in a classroom.
9. Students can give us a wealth of information about themselves.
If a student begins engaging in challenging behaviors that are new or there is a sudden sharp contrast in their behavior, talk to the student. Students are humans with lives outside of school that impact their day to day performance just like our lives as teacher humans impact our job performance. If there are unmet needs for the student, partner with school and community staff (e.g., social workers) to support the student and their caretaker(s)/family in meeting those needs. Sometimes it’s this small critical conversation that can help us support and empower a student and their caretaker(s)/family. If you think another adult may be a better choice for that student, then have any trusted adult reach out and check in with the student to better understand the possible reasons why challenging behavior may be occurring.
Note: if a student reports your lessons or activities are boring, be willing to accept that feedback and solicit ways in which the student may be more engaged. The consumers of our instruction can provide some very meaningful feedback on our performance as teachers, just as we provide feedback to students on their performance in the classroom.
10. Caretaker(s) and families are valuable stakeholders.
Forming relationships with the caretaker(s)/family members of students are critical to our success as educators. Students spend a large portion of their time with caretaker(s)/family members who are experts on their student. When addressing challenging behavior in the classroom and creating plans to support students, be sure to ALWAYS include caretaker(s)/families as equitable members of the team rather than just individuals who are on the sidelines. Many great ideas and suggestions for supporting students may come from strategies caretaker(s)/families implement at home. Furthermore, partnership with caretaker(s)/families will also create a unified, wrap-around network of support for students to enhance their success in school, community, and home environments.
Remembering these statements may not automatically lead to decreases in challenging behavior is also important. Some students may require individualized supports you can collaboratively create with your school team and caretaker(s)/families. However, it’s important to remember students are growing, changing, learning, and interacting in novel situations on a daily basis. It’s our job to support them and work with their networks of support to ensure they can access all of the engaging instructional activities we provide in today’s innovative and effective classrooms.
Additional freely-accessible resources to support students with challenging behavior can be found at the following research-based websites:
Smith, B., & Fox, L. (2003). Systems of service delivery: A synthesis of evidence relevant to young children at risk of or who have challenging behavior. Center for Evidence-based Practice: Young Children with Challenging Behavior. Available: http://www.challengingbehavior.org.
Kathleen Zimmerman is an assistant professor in the department of special education. She is a former public school teacher for elementary students with and at-risk for disabilities in self-contained and inclusive classrooms. Kathleen’s research focuses on the identification of evidence-based instructional practices to improve classroom engagement for students exhibiting challenging behavior in inclusive, general education settings.
Sophie is an excellent student. She loves her three big brothers, her dog, soccer, and loves to read. Her favorite books are about historical fiction. Recently she read books on September 11, World War 2 and The Battle of Gettysburg.
She is the “baby” of the family. Sophie, like most youngest siblings met milestones early, eager to keep up with the boys. She is a curious, creative and active girl. She is truly the apple of her family’s eyes. Sophie is amazing and today she is a star is so many ways.
I am Sophie’s Mom. I spent twenty years in the field of special education. I taught for fifteen of those years at various levels including elementary, middle and high school. I spent three years as an autism consultant and am currently a special education administrator. I have four degrees including a doctoral degree in special education from the University of Kansas. None of these high and mighty accolades fully prepared me to be the Mama of Sophie Annalee.
Always curious, always active, when Sophie became mobile, I put up the usual gates at the top of the stairs and around the fireplace. She climbed over the gates and pushed through all barricades. She was around eighteen-months-old when she made her first escape. I was folding laundry and she was standing behind a curtain watching it snow outside the sliding glass door. I turned around to give her a “boo” behind the curtain when I was surprised to find the door was ajar and little footprints in the snow. I ran to follow the footprints and found her in the front of the house, naked aside from her diaper. She was happy as a clam!
As Sophie grew older, her typical toddler behavior became more difficult. It was nearly impossible to get her to sleep before 11 pm and she rarely slept through the night. At the daycare where all of my children attended, I frequently heard, “she is so different from her brothers!”. Going out to eat was a nightmare, movies were impossible and grocery shopping was exhausting (I would give her a bag of powdered doughnuts to eat as I shopped…I was too busy to notice the judgement bestowed upon me)!
Just before Sophie’s kindergarten year, I took her to a child psychiatrist. After a few visits, the doctor confirmed what I suspected: ADHD, combined type. Before school started, I spoke with Sophie’s teacher to prepare for the school year. This teacher fostered a relationship that made Soph want to do anything to please her. In fact, I began to tell her at home, that I would tell Mrs. T if she didn’t go to bed, or take a shower or any other task she protested.
In first grade, demands began to increase. The more she was asked to do, the harder Sophie dug in her heels. When her teacher left for maternity leave in the fall, Sophie fell apart. We held on for dear life until Mrs. O’D returned. It was then that I brought up medication. Mrs. O’D felt that it could be helpful, so we took the plunge. Our doctor started with a non-stimulant and it was helpful. Not only did Sophie’s behavior improve, but academics became easier as well. Sophie had struggled all year to pass spelling tests and now generated perfect scores. The sides of the paper that were previously torn and tattered with erase marks and doodles were now pristine.
At home, Sophie’s behavior continued to escalate. Failing to inform Sophie of a change in routine after school left her completely unhinged. One evening, I turned my car towards the middle school instead of turning towards home. She began to scream and cry; she didn’t want to watch Isaac play basketball. I moved her brother, Eli, to the front seat so he would not get injured from the shoes, books and other flying objects. She continued to scream and cry for the ten-minute ride to the middle school. Once there, she refused to get out of the car. I sent Eli inside to watch the game while I waited just inside the door where I could see her, but she could not see me. It seemed like an eternity before she finally came inside.
Over the summer, the lack of routine affected Sophie more than ever before. I would wake up in the middle of the night to find her creating spaceships out of various boxes and objects from our home. Another middle of the night project included cutting all of her Barbie doll’s hair, putting it into small storage bowls, filling the bowls with water and freezing it. I have no idea what her imagination was doing at that point.
Before Sophie’s second grade year, she started her first stimulant medication. This worked like magic at school. Her teacher also implemented new strategies including sensory breaks and a reinforcement system so Sophie could earn craft time at the end of the day. Sophie loves sharks, so Mrs. H allowed her to choose different pictures of sharks to self-monitor her behavior throughout the day. Mrs. H was able to connect with Soph on a different level and Sophie blossomed. She began to love reading, she showed confidence in her academic ability and she loved going to school.
At home, however, we faced the same struggles. Her brother, Eli, began to show signs of anxiety and depression. Through counseling, we found that by constantly allowing Sophie to lead the direction of our family, he learned to become extremely withdrawn and passive. If he wanted to get dinner from McDonalds, but Sophie wanted Taco Bell, we ate Taco Bell. If Sophie wanted to watch Tom and Jerry and he wanted to watch Backyardigans, we watched Tom Jerry. He learned that his opinion was not of importance so he quit attempting to have one. His very quiet personality moved even further inward to avoid the fury of Sophie. I had Mom guilt. Mom guilt. Mom guilt.
Back to the doctor and more medication. We increased Sophie’s dosage of Concerta and added guanfacine. This was to help make our evenings a little less chaotic. I hoped this would allow me to be a mom to all of my children, not just Sophie.
Sophie started third grade this year and I requested a 504 Plan. She is blessed with another amazing teacher who has formed a relationship with my very spunky girl. She is doing well academically and most evenings are tolerable, if not fabulous. We still have moments when she removes her brothers’ pictures from the wall because she is mad at them. She still writes apologies notes that start with, “I’m not sorry I yelled at you, but…”. She still slams the door and hides in closet until she can calm down and I still find her old shoes buried in the backyard.
The medication helped slow Sophie’s impulsiveness and increased her ability to concentrate for longer periods. Sophie, however, has not changed. The people in her life have changed responses to her behavior. Our entire family has more structured schedules and routines. At home we use a behavior chart that Sophie checks regularly. She earns an allowance, loves to shop and having this bit of independence and money to spend is motivating and important to her. Her behavior chart and Sophie’s ability to understand and relate to it allows her to self-monitor. The behavior chart and medication eliminate many of the struggles we experienced at home. When it’s time to shower, I set the timer for three minutes for her to get into the shower. If she refuses, I don’t say a word to her. I simply re-set the timer for three more minutes. I repeat the process until she gets in. I make a note in her chart when she complies or doesn’t. I use this system for taking medication and other tasks that cause her to dig in her heels. At the end of the week, we review her chart, she receives her allowance. Noting on her behavior chart, without saying a word is incredibly helpful. This also helps her understand that she is in complete control of her allowance and when and how she can spend it.
Lessons I Learned
I realize now that I minimized ADHD when I was teaching. Kids with ADHD rocked in the chair while reading and spaced off in class. And that is just the beginning. My daughter yearns for routine, struggles to communicate her feelings and strives to do the right thing even though her impulses take over more often than not.
I have learned so much from loving and raising Sophie! Even with my extraordinary education and training I did not fully understand the perspective of being a parent to a child who needed more than others. I could not completely empathize with the parent who gets those calls from the school. I also did not fully comprehend the family dynamics that occur under these circumstances. What I have learned from Sophie has made me a better parent, a much more empathic educator, an administrator who understands how very critical it is for that parent/teacher/administrator relationship to be strong and collaborative.
In reflecting upon my experiences I offer these tips to parents raising children who have ADHD.
Ten Tips for Parenting a Child with ADHD:
1. Ignore, ignore, ignore!
It’s so hard to ignore the slamming door, the “I hate you” scream or the refusal to get out of bed. As a parent, our impulse to correct our child in that moment This will only backfire and increase the intensity and duration of the behavior. It is crucial to give your child time to cool off and process before attempting to engage.
2. Follow up after a blowup.
It is critical to process with your child after an incident has occurred. Use these moments for you and your child to learn from the situation. Talk about what each of you could have done differently. Talk about how you will each handle the situation if it presents itself again.
3. There is no right or wrong with medication.
Medication is a very difficult and personal decision. Sophie was in the first grade when we decided to attempt medication. She was struggling behaviorally and academically. Within a few weeks, she was able to get every word correct on her spelling test. Her handwriting became incredibly legible. The sides of her papers were not torn with doodles covering every empty spot. We attempted multiple combinations of medication before we found the mix that worked best for Sophie, but it has been well worth it.
4. Children with ADHD do not want to misbehave.
Impulsivity is a characteristic of many individuals with ADHD. This may manifest itself as being impatient, blurting out, and an inability to restrain emotions and actions. Teaching a pause helps children slow down and think before acting. Sometimes, the action happens too fast, but it is important to practice the pause, role play and go through scenarios using a pause.
5. Attempt to keep a consistent routine.
Children with ADHD are working hard to organize their world each day. Providing structure and routine may alleviate some stress they feel in daily life. Additionally, when children know what to expect, behaviors are less frequent.
6. Use positive reinforcement.
Continually catch your child doing good and acknowledge them with specific praise. “Thank you so much for putting your backpack on the hook when you came home.” Sophie has worked for many things such as craft kits, ice cream after school, and making me ride a roller coaster with her at Worlds of Fun.
7. Communicate early and often with your child’s teacher.
It is incredibly important to have an open and honest relationship with your child’s teacher. Be realistic about your child when you talk to his/her teacher. Work with your child’s teacher to provide reinforcement at home for a “good” day at school.
8. Talk to your child about ADHD.
Don’t avoid the topic as if there is something “wrong” with your child. I tell Sophie that her brain is wired differently. It helps her think about things in different and creative ways, but is also makes it harder for her to control her actions.
9. Continually point out the wonderful things about your child.
Self-talk patterns in humans is developed before the age of ten. Acknowledging those traits that make your child unique builds esteem and leads to long-term positive self-talk.
10. Not every child with ADHD is hyperactive.
Some children are quiet and may get lost in his or her own thoughts. These children may have difficulty starting and finishing a task. It is helpful to break tasks into small steps, use a timer and use visuals reminders.
Dr. Toni Cook is a proud graduate of the University of Kansas. During her years at KU, she studied under Dr. Michael Wehmeyer, researching best practices for students with significant support needs. Toni left KU with the quest for equity and persistence in supporting students to become as self-determined as possible.
Dr. Cook is currently is the Assistant Director of Special Education for Liberty Public Schools in Liberty, MO. Prior to this position, she served as an Autism Consultant in the Shawnee Mission School District and a special education teacher for 15 years in the Raymore-Peculiar School District, among others. Her favorite and most challenging position was that of a teacher for students with extensive support needs. She taught students who were eligible for special education services under the category of autism and intellectual disability (ID). During her years in this classroom, the students taught her more than she could have ever imagined. She now writes a blog for her company, Cook Behavior Co. In this blog, she includes information for families and teachers about navigating the world of special education in schools. She includes stories and tips from her time teaching and consulting. The goal of Toni’s company is to enhance the educational experience of students with extensive needs by supporting families and teachers. You can find her blog at www.cookbehavior.com.
First year Doctoral students in the Department of Special Education at the University of Kansas share thoughts on their transition to this amazing experience!
I’ve been flooded with knowledge and wisdom from others all around me during this first year. Being present and mindful have been the keys to learning for me every day. Finding joy in my daily activities allowed me to discover many great opportunities disguised as hard work. I continue to refine my priorities and increase my focus thanks to the immense support of my family, research team, and friends!
When I got my letter admitting me to the doctoral program in special education at KU, the first thought in my mind was total disbelief. I have come a long way since then yet everything is so exciting, thrilling and beautiful. The friends I have made, the great faculty I have met and the inspiring conversations I have had are all part of the journey in finding neverland! A neverland where creativity is encouraged, every student and individual is equal and there is justice, equity and fairness all around. If I ever falter, I have an extremely dedicated group of mentors, advisors and faculty members to encourage me forward. I feel privileged to be at KU and almost done with my first year. Everyday, I wake up with a purpose and a set determination to move forward. I thank my advisor, faculty and fellow graduate students for this purpose!
Kyunghwa (aka “Kay”) Park
When I came to Lawrence last summer, I was apprehensive about fitting in an entirely novel environment and surviving the 1st year of doctoral program at KU. But during this time, not only am I in awestruck admiration for the passion and scholarship evident in each professor, but I also am thankful for the privilege to sit among my inspiring fellow classmates every week. I am proud of KU special education program, my cohort fellows and myself who is part of it. The picture that best fits my year! “Bluestocking”
Heather Jeanne Forbes
The thought of moving across the country and away from my family was difficult, but I found a great deal of friendliness and support here. I’ve learned a lot about research, the field, and my own abilities. It is clear the program is designed to help you succeed, and I look forward to new challenges.
Change and the Right Fit
This year has been an eye-opening, mind-boggling, and altogether a humbling experience for me. I have been exposed to many different philosophies, paradigms, and practices that I had not considered before this first year. I am grateful for the opportunity to grow, learn, and self-actualize among an outstanding group of peers and amazing, supportive faculty members.
I was anticipating a great deal of stress as a first year doctoral student; I was nervous I wouldn’t be able to “keep up” with the program. This year has been challenging, but the program is designed so you develop skills along the way. I’m still very humble, but I’m not insecure.
I’m excited to learn more and thankful to be surrounded by people who want me to succeed.
The Department of Special Education at the University of Kansas consistently ranks as one of the top graduate-level special education programs in the country. In the latest edition of U.S. News and World Report’s America’s Best Graduate Schools, the Department of Special Education at the University of Kansas ranked number one overall. Each year, the Department continues to enhance its master’s and doctoral-level programs to ensure the best preparation of special education teachers, teacher educators, administrators, and field researchers. Students who receive their professional development through the Department have the opportunity to learn and work closely with nationally and internationally renowned faculty. The Department’s commitment to effective teaching, excellent field supervision and support for novice special educators, innovation, and leadership make the University of Kansas a great place to begin or further a special education career.
MARTHA ELFORD Fulbright Specialist 2018–2019
University of Jyväskylä, EduCluster Finland and Niilo Mäki Institute invited Fulbright Specialist Martha Elford to Finland to collaborate on enhancing teaching and learning with technology, and on developing current in- and pre-service teacher training practices by using digital guidance systems. Dr. Elford’s long experience and research in the area were deemed very important by her Finnish hosts. At the same time, the Finnish experience turned out to be transformational for Dr. Elford herself.
Dialogue Leads to Professional Improvement
I had no idea what it would mean to me personally and professionally to come to Finland as a Fulbright Specialist. My experience as a Finland Fulbrighter changed me professionally by informing me of pedagogical practices that would improve my teaching at the university level as I design and deliver online instruction. I witnessed the integration of pedagogy into every presentation and course design in which I participated — from the Fulbright Orientation to Grade 6 practice teacher. This reminded me that pedagogy should be integral and intentional for education to be done well. As a professional who focuses on teacher preparation, I attribute my experience as a Finland Fulbrighter to instilling in me the renewed purpose to infuse pedagogy into the life and work of every special educator and classroom teacher who enrolls in my university courses.
Another way my experience as a Finland Fulbrighter changed me professionally was by giving me a voice. I have never felt as valued and as listened to as a professional and as a person. I am so impressed by how sincerely interested and committed the educators in Finland are to learning and engaging in dialogue that leads to professional improvement. The conversations I had with Finnish educators gave me confidence that I could never have achieved as a professional without this experience.
Finally, my experience in Finland changed me professionally by giving me the opportunity to witness first-hand what I have heard about education in Finland for the past 15 years. By seeing Finnish education with my own eyes, I have the professional responsibility to spread the good word about what we could be doing in the USA to incorporate a research-to-practice model that works so well in Finland. Although not everything can transfer directly across cultures, the one thing that makes sense to me is to at least examine more closely the research that is coming out of Finland related to Dyslexia and Literacy. This research could make an important difference in education in the USA.
The Finnish Work-Life Balance
I grew personally while in Finland through the friendships I made. I honestly felt that every person I met deposited a token of wellbeing, kindness, and value into me as a person. I still marvel at how quickly I formed relationships with the other Finland Fulbrighters. I am sure it was no accident because one of the things I learned about Finnish people is that everything is intentional and purposeful. I noticed how my colleagues in Finland had a healthy work-life balance, and I wanted to bring that home with me. Their examples made me believe it is possible for me, too. I started practicing some new behaviors while I was in Finland related to wellness and work-life balance. I find it difficult to describe how invigorating this has been for me. It is as if just being in Finland gave me permission to be my best self.
Finland is part of me now. Being a Fulbright Finland alum adds a dimension to my identity that I did not know was missing. Because of Fulbright Finland, I am a better professional and a better person.
Dr. Marti Elford is the Program Designer for the online High Incidence Disabilities Teacher Education Practicum program at the University of Kansas. Dr. Elford has experience as a classroom teacher, a reading specialist, and an instructional coach. Dr. Elford earned her Ph.D. in Special Education at the University of Kansas as a doctoral fellow with L-TEC, Leadership in Teacher Education Core. As a post-doctoral fellow, Dr. Elford supervised two research projects: a Poses Foundation grant studying Instructional Coaching, and TeachLivE, the use of simulation in teacher preparation programs. Dr. Elford’s research interests include the impact of coaching for pre- and in-service teachers on professional growth, using virtual learning environments, such as TeachLivE, for teacher preparation and professional development, and using technologies such as bug-in-ear to deliver immediate feedback to teachers and students.
This article is used with permission from
a biannual magazine published by the Fulbright Finland Foundation.
Jen Vogus is a parent, educator, photographer, and disability advocate. Her passion for photography began years ago when she started taking pictures of her son, Aidan, who does not communicate verbally. She captured his daily life and favorite things so he could share them with peers and teachers at school, giving him a voice to share his interests and all that he is capable of doing. She is a graduate of the TN Council on Developmental Disabilities’ Partners in Policymaking Leadership Program, a board member of The Arc Williamson County and a founding and continuing parent advisory council member of WCSLink, a special education parent organization that collaborates with the local school district. She combines her passions for teaching, photography, and advocacy by developing and leading photovoice projects that put cameras in the hands of young adults with disabilities, empowering the participants to utilize their own photography as means of self-expression. She has had the pleasure of presenting her story and about the AbleVoices program at a numerous state-wide and national conferences including The Arc national convention and TASH’s national conference.
I’ve always had the tendency to notice and appreciate the more ordinary things in the world around me, but it is my experience as a parent of a child with a disability that has really heightened this for me. My son, Aidan, began having seizures shortly after birth due to a novel chromosomal deletion. His development lagged behind his typically-developing peers as those first several months and, eventually, years went by. No matter how many doctors we saw, how much physical and speech therapy we did, and how much love and support we gave at home, he was not meeting those age-appropriate milestones. Slowly, I began to understand the challenges Aidan would face and the degree of help and care that he would always need.
When reading books and talking to professionals about parenting a child with a disability, one recommendation I heard often was to put behind the expectations you had for your child before he was born. Longing for baseball games and learning to ride a bike were counterproductive- a parent shouldn’t focus on what he cannot do, but what he can do. Which made perfect sense to my husband and I, and we welcomed that approach whole-heartedly. But even for the most loving and patient parent, this can be challenging at times when you are in the midst of life’s daily struggles where even the simplest of things are difficult and you long for a “normal” life for yourself and especially for the child that you love unconditionally.
When Aidan entered elementary school, it became increasingly difficult for me not to compare him to the other students and constantly worry about what the future holds for him. The gap in abilities grew wider and wider as each school year passed and the list of activities he could participate in got shorter and shorter. But I knew I had to tackle my feelings of worry and negativity that were keeping me from happiness and living in the moment. That is when I decided to really embrace the “ability” part of disability… it didn’t matter what the other kids were doing- it only mattered what Aidan was doing and more importantly, how he was feeling. I really set my mind to notice the little things more than ever. Little things like his infectious smile, his unbridled excitement when he saw someone mowing the lawn, his quiet focus as he watched an animal go by, and his amazing connection to and love for music. Aidan is Dave Matthews’ biggest fan! Because, for kids like Aidan, and really all kids, the little things in life are the big things and they need to be celebrated.
Parents are their child’s best advocate and this role is especially important when your child does not communicate verbally and has considerable physical challenges. At school, Aidan has limited ways to communicate with his teachers and peers and they are often not able to see the things in him that I did. I shared Aidan’s “little things” with his teachers and aides but the stories got lost after they were told. I tried to think of a way I could share this information in a more permanent and visual way. So I began to photograph the things Aidan was doing and the things that he enjoys. I sent the photos with captions to school with Aidan on Monday mornings for him to show his teachers and peers. It gave him a voice to share his interests and all that he was capable of doing.
Teachers and other students were delighted to learn that Spiderman is his favorite superhero, that he takes riding lessons on a horse named Lady, that he can hold his breath and swim down to the bottom of the pool, that he loves the thrill of the wildest rollercoasters, and that he gives his dad the biggest bear hugs of all. “That is so cool, Aidan! I like those things too!” students would say. This feedback, in turn, helped me to realize that Aidan is, in fact, more like other kids than he is different from them. And the other adults in his life were seeing this as well and becoming strong advocates for him. Taking photos that made me grateful for Aidan was also a catalyst for him building more lasting and meaningful connections and interactions with his peers (who became his friends) and his teachers and the other adults in his life.
I began putting the photos in a book and that inspired others to contribute to it. His teachers and aides at school also began taking photographs of Aidan during the day to share with us at home all that he does and enjoys at school. Pretty soon his photo book took on a life of its own- he helped type the captions, glued the photos into the book, and shared his visual stories with everyone. He has been keeping a photo book of life at home and school since the second grade and now he is a junior in high school! And, more recently, we’ve started his own Instagram account to share photos.
As a result of taking these photographs of Aidan, I became more and more interested in the technical and artistic aspects of photography. I immersed myself into learning the various settings to creatively control the camera and obtain better exposures, which led me to getting involved in classes, workshops, and related professional organizations. So capturing Aidan’s “little things” has also made me grateful for an additional reason- it’s given me an outlet that is creatively, intellectually, and professionally stimulating.
After seeing the powerful effects of photography for Aidan, I sought ways to take the benefits to him to people with disabilities more broadly. Specifically, I’m now using photography as a tool for communication and advocacy beyond Aidan’s past needs (specifically the photo books) and just looking at and sharing photographs, but taking them as well. There is a growing body of research on the benefits of photography with under-represented groups, such as at-risk youth, women without healthcare, and older people with early-stage dementia for example. Putting cameras in the hands of people who feel like they “do not have a voice” as an outlet to express themselves and tell their story has become an increasingly utilized approach. Research and practical interest in utilizing photography with children and adults with disabilities are expanding. I realized quickly that I am not alone in my discovery of the benefits it has offered Aidan.
After learning about the photovoice approach and participating in an intensive training, I have developed the AbleVoices program, teaching photography as a means for self-expression and empowerment to young adults with disabilities transitioning from school to adulthood. Working with a new group each semester, they engage in several getting-to-know-you activities, learn how to use digital cameras, participate in photo scavenger hunts to develop their “eye”, learn basic composition techniques to better tell their story through photographs, and have collective discussions about their photos. The culminating experience of the project is to exhibit photos that showcase their strengths and represent themselves as individuals in a gallery space so that family, friends, and the community can celebrate their work. Students are able to keep their camera so they can continue to make photographs after the project ends.
Having people with disabilities share and take photographs embraces the concepts of dignity, self-determination, and allows us to see new possibilities and opportunities in the lives of those we interact with and care for so much. We’ve all heard the phrase, “A Picture is Worth a Thousand Words” (probably a thousand times!) but there is real value in this cliché, sometimes in unexpected ways.
My challenge for people in the disability community is for them ask their family member, their student, their client, or their loved one to express themselves by sharing and taking photographs… the end result is a direct line to the heart! What we discover is that we learn as much from them as they learn from us. Photography is a powerful way to create a better tomorrow for people with disabilities!
Brian Herndon, PhD., is Associate Professor of Teacher Education at John Brown University. He also holds a Graduate Certificate in Leadership in Special and Inclusive Education Program from
The University of Kansas School of Education.
I’m a numbers guy. I love numbers. I did my dissertation as a quantitative study because the last thing in the world I wanted to do was to transcribe countless hours of interviews. At the time, there was nothing about that process that appealed to me.
….Numbers tell a story.
Let me tell you mine:
46 – the number of trips I’ve taken around the sun
17 – the number of years I’ve been joined on those trips with my wife, Jenny
4 – the number of children we have
1 – the number of children we have with disabilities
5 – the number of degrees/certificates I have
21 – the number of years I have been an educator
6 – the number of years I served as a school administrator
3 – the number of years I’ve served as an educational advocate for families of children with disabilities
100s – the number of times I’ve served as the Local Educational Agency Representative (LEA) for Individualized Education Program (IEP) meetings
0 – the number of times I have felt comfortable dropping my son with Down syndrome off at school
Those are some numbers! Yet, there is something missing. There is a narrative behind those numbers which doesn’t emerge by examining the numbers, alone.
Lived experience has a way of showing the importance of the narrative behind the numbers. As I examine those numbers, I see one that really stands out to me. It’s not the number of degrees I have, though that’s impressive. It’s not the number of times I have served as an LEA in IEP meetings, though that’s also impressive.
It’s the number that doesn’t hold a lot of value: 0. You see, that number, above all the others listed in my story, holds a tremendous amount of value to me. I have a son with Down syndrome. His name is Nate. He is a very bright, articulate boy with 10 years under his belt. He reads, writes, and understands numbers. He’s not on grade level, but he is (mostly) educated in the general education classroom. He has behavior issues from time to time, and this is the thing that causes me the greatest fear.
Here is a bit of the narrative that gives value to the 0:
I’m a professor at the local university in our town, and my son’s school is on my way to work, so I am privileged to get to take my son to school every day. Every day, this is what our drive sounds like:
Me: “Nate, tell me what your day is going to look like today.”
Nate: “It’s going to be good.”
Me: “What does ‘good’ look like?”
Nate: “Listening to my teachers. Doing the teacher’s work. Following directions. Being responsible.”
Me: “Very good. I hope it goes well for you today. How many smiley faces do you think you will get on your chart?”
Nate: “All of them!”
Me: “Good deal, buddy! I hope that happens!”
As I ‘round the corner in my ’02 Outback, I see Nate’s school, peeking out from behind the trees, as if to taunt me in a childhood game. My stomach tightens. I become aware of my breathing. “Just breathe,” I tell myself. “It will be okay,” I whisper reassuringly. “He’s had several good days in a row. So, today should be no different,” I say to myself, trying to ease the anxiety building in my chest. I try to relax as I pull into the center turn lane, clicking on my left blinker.
We make the turn into the school’s driveway.
“Nate, take your buckles off and get your backpack on,” I tell my son. We roll toward the drop off lane. “Alright, get out. Have a great day! Be good!!” I say it almost as if to convince myself that it’s possible as much as I am telling it to him.
My experience and my education have taught me that all children with disabilities should be educated in the Least Restrictive Environment, unless the nature and severity of the disability is such that the child cannot be educated with his or her nondisabled peers, even with the use of supplementary aids and services. IDEA 2004 does not provide definitions for this statement beyond what you have just read. IDEA 2004 does state that children whose behavior is severe enough can be removed from the general education environment.
“Education is the most powerful weapon you can use to change the world.”
My 46 trips around the sun have taught me that not all school districts view special education law through the same lens. There is varied interpretation about statements in the law, specifically when it pertains to educating children with disabilities alongside children without disabilities. We have worked very hard to make sure that our son has equal access to the same things that all children have access to in school. We have worked very hard to ensure that our son is educated alongside his peers without disabilities.
It has not been an easy journey, and it has not been without great sacrifice. I believe that the mild bouts of anxiety I experience nearly every day are related to the fact that I know all of our work on behalf of my son could come to a halt, should the district determine that my child’s behavior is too disruptive for the general education classroom.
My education through the University of Kansas School of Education has taught me that when we educate children with disabilities alongside children without disabilities, we normalize disability. We help those without disabilities view those with disabilities as experiencing something that is a normal part of the human journey. Children with and without disabilities become adults with and without disabilities.
When disability is normalized and children with disabilities have been part of the regular education setting for most of their educational career, then being an adult with a disability is not so disabling. It is our hope and dream that our son, Nate, will be a valued and valuable member of society, contributing to the world around him in a myriad of ways. My wife and I understand that the likelihood of this happening diminishes greatly if he ends up in a self-contained classroom. So, even though our son is only in 4th grade, we know how incredibly important it is that we are building a solid foundation of inclusion for him.
“Inclusion is not a strategy to help people fit into the systems and structures which exist in our societies; it is about transforming those systems to make it better for everyone. Inclusion is about creating a better world for everyone.”
Diane Richler, past president, Inclusion International
Returning back to that “0” in my story, I know that I will never feel comfortable dropping off Nate at school or waiting in the car rider line to pick him up. I have three other typically developing children, so I know the feeling that other parents experience when they drop off or pick up their children at school.
However, the feeling is different with Nate. If I never feel that way dropping off or picking up Nate, it will be okay. It is minor in comparison. The fight for my son is real, and I will not back down until he has true equality under the law. Even if it means experiencing a bit of pained anxiety in my chest every day.
I write this post because I believe it is important for practitioners and researchers, alike, to understand the narrative of the “special needs parent.” I’m a member of a few Facebook pages for parents of children with Down syndrome. We don’t experience life in the same way as other parents, and this includes the simple things like dropping off and picking up our children from school. The anxiety we experience when we see our child with their behavior improvement plan sheet in their hand as they make their way to the car rider lane runs deep, and it extends far beyond the drive home. We want to feel “normal,” whatever that may be. Right now, for us, “normal” is associated with anxiety and pain.
I suggest that educational practitioners and researchers note this, make the necessary accommodations for us, and include us in research on this matter. My hope is that together as researchers, practitioners, and parents, we can create a world where disability is not so disabling and where children who experience life differently will be included as a regular part of society. Until then, we “special needs parents” will continue to fight, both silently and vocally, yet always with the pains of anxiety and stress coursing through our veins.
Dr. Herndon is Director of the Missouri Center for Inclusive Education.
“We envision a world where school systems are designed to accommodate the needs of all children (Kozleski, Thorius, & Smith, 2014; Kozleski, Gibson, & Hynds, 2012; Bryk, Gomez, Grunow, & LeMahieu, 2015). Schools have, in the past, segregated children, specifically children from historically marginalized groups of people (Theoharis, 2007), and it is our hope that we change the practice of segregating children, specifically children with disabilities. Children with disabilities deserve to be educated alongside their typically developing peers, and we will always work toward that end.”
Bryk, A.S., Gomez, L.M., Grunow, A. & LeMahieu, P.G. (2015). See the system that produces the current outcomes. In Learning to improve: How America’s schools can get better at getting better (pp. 57-85). Cambridge, MA: Harvard Education Press.
Kingston, M., Richards, C., Blank, R., Stonemeier, J., Trader, B., & East B. (2014). Leading education reform initiatives: How SWIFT (Schoolwide Integrated Framework for Transformation) coordinates and enhances impact. Issue brief #2. National Center on Schoolwide Inclusive School Reform: The SWIFT Center, 1-14.
Kozleski, E.B., Thorius, K.K., & Smith, A. (2014). Theorizing systemic reform in urban schools. Ability, equity, and culture: Sustaining inclusive urban education reform, (pp. 11-31). New York, NY: Teachers College Press.
Kozleski, E.B., Gibson, D., & Hynds, A. (2012). Changing complex educational systems: A framework for collaborative social justice leadership.
In Uhl-Bien, M. & Ospina, S. (Eds.), Advancing relational leadership research: A dialogue among perspectives (pp. 263-286). Charlotte, NC: Information Age Publishing.