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Strengths Based Inclusive

By James R. Thompson, PhD

All doctoral students and faculty in the Department of Special Education at the University of Kansas participate in specializations. The six specializations include the Strengths Based and Inclusive Approaches to the Education of Adolescents with Extensive and Pervasive Support Needs sequence of which I co-lead. I suspect that our specialization has the longest program sequence name in the entire field of education and it doesn’t exactly roll off the tongue. Because several of us have had a hard time getting the full name correct when asked, we’ve started calling it Strengths Based Inclusive for short.

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KU Department of Special Education website

Leaving the length of the name aside for a moment, there are probably many people outside of the field of special education, and perhaps some inside as well, who might be curious about our focus on “strengths”.  After all, our doctoral sequence is intended to prepare scholars whose future work concerns children and adults with disability diagnoses that are consistent with intellectual disability and related developmental disabilities. Isn’t that population different from the general population because of their deficits?

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The definitions that are used for diagnoses of disability clearly suggest that evidence of a deficit is a distinguishing characteristic. For example, according to the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), intellectual disability is “a disorder with onset during the developmental period that includes both intellectual and adaptive functioning deficits in conceptual, social, and practical domains” (American Psychiatric Association, 2013, p. 33).  This deficit-based definition and approach to understanding people with disabilities is consistent with what has traditionally been known as the medical model of disability.

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Identifying deficits within a person can be useful to the extent that deficits can be prevented or remediated. Certainly, preventing neurological impairment and teaching people useful skills are worthwhile endeavors. However, the downside to the medical model becomes apparent in instances where a condition cannot be prevented (i.e., the central nervous system is already formed) and achievement gaps cannot be fully remediated, even with the very best instruction.

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Illustration by Pete Gamlen.

When viewed through a medical model lens, a condition that cannot be fixed is understood to be a chronic pathology. An implication of such a conceptualization is to focus professional efforts on caring for people in specialized settings, much like people who are physically ill being provided care in a hospital. Pathologizing and medicalizing disability has historically resulted in restricting people’s opportunities to participate as full citizens in society.

downloadAn alternative to the medical model is a social-ecological model to understanding disability, where disability is understood in terms of the fit between a person’s competence and the demands of community environments. Understanding people this way focuses professional efforts on modifying the context in which people function. It is important to point out that a social-ecological conceptualization does not call for denying that people with disabilities experience limitations in personal competency. Their limitations in competency, however, are not their most salient characteristic. According to a social-ecological conceptualization, the most important difference between people with disabilities and the general population is that people with disabilities need extra support to successfully participate in daily life activities in community settings. Educators and other human service professionals are called to prioritize time and energy on (a) making environments and activities more accessible and welcoming, and (b) identifying and arranging personalized supports so that a person can successfully participate in culturally valued settings to afford access to rich life experiences.

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Zahra Al Dhamin, Saudi Arabian sculptor. Photograph by Gadsen-Hayton.  BBC Online blog  review of exhibition Disabled People at Work by Kathleen Hawkins, June, 2014.

So, in terms of the real world, what does this changing conceptualization of disability really mean? I know a young man whose life experiences provide a good example of the power of a strengths-based, supports oriented, and inclusive approach to working with people with disabilities. For the past five years this young man has been employed as an office worker in one of the world’s largest insurance companies. His job involves sorting and delivering mail and running an array of office machines, while often being pulled away from his own duties to help others in the office who are in a pinch. From a deficit-based perspective, an observer could point out that it took him longer to learn his job tasks compared to others whom his company might have hired, and he has continued to require more direction and coaching on the job than most other employees.  He might never had been hired had the focus been placed solely on these challenges.

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Instead, his strengths were taken into consideration and he has proven to be an excellent, long-term employee. Although he could not learn job tasks as quickly as others, this was not a weakness that kept him out of the job market. Rather, his commitment to learning helped him master the duties his job required, and once he learned them he learned them  well. The fact that he needed more direction and coaching than others did not prove to be an insurmountable obstacle to job success. Rather, his job required someone who was willing to follow directions from others, and it was important to have someone who could be counted on to do job assignments as directed. His eagerness to help others and his flexible disposition were strengths that served him well in a job that required him to step away from his normal duties and assist others who found themselves in a time crunch. Perhaps his most important talents were his cheerfulness and ability to bring out the best qualities in others. These personal strengths had a positive effect on the office climate, which enhanced everyone’s productivity and motivation.

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The Two Fridas (1939) by Frida Kahlo. Image courtesy of the Frida Kahlo Foundation.

It would be a mistake, however, to limit consideration of people’s strengths and talents to only those that are directly relevant to success at school or on a job. Most people want to embody and share different sides of themselves; that is, they seek multiple ways to demonstrate their strengths and make contributions to the world. Having a multi-faceted life may even be essential to living a fulfilling life. Can we envision people with extensive or pervasive support needs in non-vocational and non-student roles? Can we envision them as artists, preachers, chefs, gardeners, travel enthusiasts, athletes, sports fans, or in any other culturally valued role that grows and asserts itself  from an inner passion? Can we encourage people with extensive or pervasive support needs to develop their strengths in ways that enable them pursue life experiences that truly enhance their quality of life? A story from Psychology’s history shows what can happen when people with intellectual disability are allowed to discover their dormant/hidden/undervalued strengths.

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In 1932, at the height of the Great Depression, a group of adolescent girls and women with developmental disabilities were living at a state institution in Iowa with nearly 2,000 other residents. Near to  the institution was a severely overcrowded and understaffed state-run orphanage. The orphanage was in dire straits due to a perfect storm of an increasing number of destitute women who simply did not have the means to take care of their babies, a decreasing number of families that were in any economic position to adopt, and a dearth of public funding for human services. Infants at the orphanage were failing to thrive physically and intellectually due to a lack of stimulation. With literally no room to place another baby, two infants (15 and 18 months old) who showed signs of significant developmental delays were temporarily moved to women’s cottages on the grounds of a state school in Iowa. Dr. Skeels (1966), who chronicled the events, recalled, “The youngsters were pitiful little creatures. They were tearful, had runny noses, and sparse, stringy, and colorless hair; they were emaciated, undersized, and lacked muscle tonus or responsiveness. Sad and inactive, the two spent days rocking and whining” (p. 5).

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Video still taken from a documentary titled “In Our Care: Glenwood State Hospital and School” produced in 1952.  Retrieved from YouTube.

Six months after placement, Dr. Skeels (1966) visited the wards of the institution where the babies had been left. He observed two toddlers “smiling, running about, responding to the playful attention of adults and looking like any other toddlers” (p. 6). He did not recognize them as the two “pitiful” babies that had been sent from the orphanage a little over a half of a year ago. He returned to the orphanage, which was in every bit of disarray as it was six months earlier, and concluded “There seemed to be only one alternative, and that a rather fantastic one; namely to transfer mentally retarded children in the orphanage nursery, one to two years of age, to an institution for feebleminded in order to make them normal” (Skeels & Dye, 1939/2002, p. 21).

Dr. Skeels convinced the State of Iowa to allow him to identify the infants with intellectual disability in the orphanage.  Half were sent to the institution (the experimental group) and half remained at the orphanage (the control group). A follow-up two years later showed the experimental group infants were thriving while the control group infants were languishing (Skeels & Dye, 1939/2002). The experimental children lost their diagnosis (i.e., they no longer met deficit criteria for intellectual disability) and 12 of the 13 were adopted by families. When the children from the two groups were contacted 25 years later, all of the experimental group children were found to be self-supporting adults, compared to only 4 of the 12 control group children (Skeels, 1966).

Psychology was still a relatively young field at the time of Dr. Skeels’ study, and by today’s standards his research was significantly flawed in terms of scientific rigor. Many would suggest it was flawed ethically as well (How could they leave half of the children in the orphanage, knowing that they would be neglected?). From a research standpoint, the biggest problem was that data collection and analyses were overly focused on IQ score changes; infant and early childhood IQ scores are notoriously unreliable, and therefore IQ was not valid as a dependent measure. However, despite questionable data, Dr. Skeels’ main conclusion was spot on. Namely, babies need stimulation and human contact (e.g., touch, affection) to flourish. Neglectful early environments can result in a failure to thrive with long-term effects. Dr. Skeels deserves credit for influencing a line of research targeted to understanding how experiences and conditions early in life can affect future physical, cognitive, emotional, and social development.

Screen Shot 2017-11-11 at 1.17.54 PMUnfortunately, very little is known about the women who cared for these neglected babies. But, what is known is both beautiful and heartbreaking. Skeels and Dye (1939/2002) reported that each child was placed on a ward that included 30 institutional inmates (this was term used at the time for institutionalized adults) who they described as older girls, and one attendant (there a was staff hierarchy, with matrons and assistant matrons in charge of the wards, and attendants were the lowest level of employee). We also know that “in the case of almost every child, some one adult (older girl or attendant) would become particularly attached to a given child and would figuratively ‘adopt’ him” (p. 25). But, everyone contributed. The girls would spend a great deal of time with the children, teaching them to walk, talk, play with toys and play materials, and in the training of habits. Most of the clothing for these children was made by the older girls. “The girls were so fond of the children that they would actually spend their small earnings and allowances to buy them special foods, toys, picture books, and materials for clothing” (p. 24).

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Video still taken from the documentary “In Our Care: Glenwood State Hospital and School” produced in 1952.  Retrieved from YouTube.

The pitiful infants certainly brought a priceless gift with them to the institution. Namely, they offered those who were willing to love them the opportunity to discover their own strengths and talents, and to find additional meaning in their own lives. What a delightful change of pace it must have been to have a baby on the ward to love and to hold. What joy these babies must have brought to their temporary mothers.  In Man’s Search for Meaning, Victor Frankl (1992) explains how he survived the Holocaust by finding personal meaning through his experiences. He writes:

Being human always points, and is directed, to something, or someone, other than oneself – be it a meaning to fulfill or another human being to encounter. The more one forgets himself – by giving himself to a cause to serve or another person to love – the more human he is and the more he actualizes himself (p. 115).

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Psychiatric Hospital of Schönbrunn, 1934. Photo by Nazi Party SS member, Friedrich Franz Bauer

After 2-3 years at the institution, the toddlers were removed and returned to the orphanage because they were now perceived to be promising candidates for adoption. Did the mothers take pride in the work they had done? Did they celebrate the fact that they had provided their child with an opportunity for adoption by a family? Were they even aware that this was the child’s likely fate? Or, was a child, who was loved dearly by a group of women, taken away from them without much explanation? Did any of them question why, despite their efforts and success, they were no longer considered to be worthy to be mothers, or even provided opportunities to maintain their relationships with these children?

Skeels and Dye’s (1939/2002) famous study offers little to us today in terms of guidance in regard to child development. There is far more solid research documenting the importance of optimizing the early years of a child’s life. The most relevant lesson we can take away from their study concerns the importance of understanding people with disabilities by their strengths and seeing their potential to enhance the lives of others with whom they are associated.  The women from the Glenwood State School were briefly provided an opportunity to discard their identities as institutional inmates, and discover their strengths as healers and mothers.

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Art work by Aoife Hyland Sidener, 6th grade middle school student, Kansas.

In the Strength Based Inclusive sequence the efforts of students and faculty members coalesce around research agendas that bring to light the strengths and gifts of people with extensive and pervasive support needs.  We strive to prepare future educators to see past disability labels while recognizing and fostering the talents of their students. As long as the faculty and students in our doctoral program sequence remain true to these ideals, it is probably OK if we continue struggle to correctly recall the full name of our sequence.

References

American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Arlington, VA: American Psychiatric Publishing.

Frankl, V. E. (1992). Man’s search for meaning: An introduction to logotherapy (4th ed.). Beacon Press: Boston, MA. Retrieved from https://archive.org/details/MansSearchForMeaning-English

Skeels, H. M., & Dye, H. B. (1939/2002). A study of the effects of differential simulation on mentally retarded children. Proceedings of the American Association on Mental Deficiency, 44, 114-136. Reprinted in J. Blacher & B. Baker (Eds), The Best of AAMR: Families and Mental Retardation: A Collection of Notable AAMR Journal Articles Across the 20th Century. American Association on Mental Retardation: Washington, DC.

Skeels, H. M. (1966). Adults status of children with contrasting early life experiences: A follow-up study. Monographs of the Society for Research in Child Development, 31 (3, Series No. 105).

Bio

James R. Thompson, Ph.D. has over 30 years of experience in the field of developmental disabilities as a direct support professional, special educator, rehabilitation counselor, teacher educator, and researcher. He has authored or co-authored over 70 books, book chapters, monographs, and articles in professional journals, and has directed multiple federal and state funded research and model demonstration projects. His primary research focus for the past 15 years has been on support needs assessment and planning with children and adults with intellectual disability and related developmental disabilities. He is the lead author of American Association on Intellectual and Developmental Disabilities’ Supports Intensity Scales (both the adult version and the children’s version), the first assessment tools to provide standardized measures of the support needs of people with disabilities. The Supports Intensity Scales have been translated and published in 13 languages, and are being used throughout the United States and world. Jim serves as Editor of Intellectual and Developmental Disabilities.

Dr. Thompson serves as a Professor in the Department of Special Education, Senior Scientist at the Beach Center on Disability, and Associate Director of the Kansas University Center on Developmental Disabilities. He has previously served on the Board of Directors for the AAIDD and the Council for Exceptional Children’s Autism and Developmental Disabilities Division. He currently serves as Editor of the professional journal, Intellectual and Developmental Disabilities.

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Beyond Location: Education for Travellers as an Irish Ethnic Minority

Máirín Kenny, PhD, is a former teacher, principal and educator who has worked for over thirty years with students and parents from the Irish Traveller community, a recognized indigenous ethnic minority within Ireland. Dr. Kenny is currently an independent scholar and conducts commissioned research on equality, disabilities, ethnicity, racism, and sectarianism in Irish education.  Hawk Hopes Blog invited Dr. Kenny to share some perspectives on what it means to be an agent of change within the Irish educational context.  Here is what she had to say.Sorcha Hyland

Traveller-Rights

Who are the “Irish Travellers”?

Irish Travellers have been a distinct group in Irish society since at least the twelfth century. They are Irish, but a recent human genome research project has shown them to have been genetically separate since at least the sixteenth century. And only this year they won recognition in Irish law as an ethnic group—a status they have had since 2000 in Northern Ireland (under UK law). There are ethnic populations all over Europe, similar to the Irish Travellers. It is officially recognized that these peoples are targets of the most virulent racism across Europe. There are Irish and European people who will accept immigrants, refugees, asylum seekers—but not the Travellers, or the Roma.

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The Irish Travellers’ economic activities married well with nomadism. They turned their hand to whatever trade or service was required and could cover a territory large enough to survive. They traded in horses and donkeys, they worked as blacksmiths (shoeing horses and donkeys), and tinsmiths (making and mending tin cans, buckets, basins—hence their older name “tinker”, a term that acquired pejorative racist meanings). And in the days before village shops, they hawked selling small domestic goods such as wool and kitchen utensils. Irish Travellers included all sorts of traders who could provide a range of mobile services to a wider territory than the sedentary working population could feasibly cover. In the twentieth century, they turned to trading in second-hand goods, scrap metal, gardening, etc. But the space for these services has shrunk. And at the same time, they are virtually shunned in the employment market—currently, unemployment among Travellers runs at above 70%.

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The question “who are they?” is a good one. It never struck the dominant Irish settled population to ask that question—still less did it strike us to ask the Travellers that question. In the early 1960s, prominent social activists discovered the plight of this group—a population of about 6,000, living on the roadside in miserable tents and wagons, with no services, scant  access to health or education services, a life expectancy of 30 years, and an infant mortality rate seven times the national rate. But these leaders, and the government, once stirred to action, assumed that these people were dropouts, perhaps descended from homeless peasantry in Famine times. And the solution was to settle them down, clean them up, and fit them in.

Traveller's_Horse_on_Melmerby_Village_Green_-_geograph.org.uk_-_228318In a negative sense, nomadism also shaped everything. In Ireland (and in the UK and elsewhere), Irish society and social structures (law, housing policy, etc.) have traditionally used nomadism as a tool to destroy the nomad: historically, they were needed but not wanted by local communities. Once the work was done, the Travellers had to move on; and at an official level roadside camping was made illegal. In short, the timing of their movements was dictated by the settled population, and the conditions for dignified nomadism were cut from under them, where they existed at all.  Very few of them are now nomadic, and even fewer want to be so.

But when they try to settle, they are still in the wrong “place”. Housing policies have driven them into standard accommodation (hugely inappropriate and inadequate), and those who move now do so because they can’t find anywhere to live. Everyone wants them to stop travelling, but not to stop it “here”—Not In My Back Yard (NIMBY-ism).

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Today, there are perhaps 40,000 Irish Travellers. Theoretically they have access to all the social services, but racism still raises its ugly head to narrow that. They nearly all stay in school until age 15 years, but that is shockingly far below the completion level for the general population—the education system is failing them more than any other sector. Their life expectancy is 11 years below the national average for women, 15 below for men. Infant mortality is over three times the national average. Suicide rates for men are seven times the national rate, and for women 4.5 times the rate.

Why did you choose to work in school provision for Irish Travellers specifically?

When I chose to work with the Irish Travellers I also thought they were at the extreme end of rural disadvantage—so marginalized that they were homeless. I think I quickly realised that was far from the whole story—if it was part of the story at all.

As a teacher, and later principal in a school for Irish Traveller children, and as a sociologist I was very interested in educationally disadvantaged populations. From the get-go, I wanted to work with people who were experiencing marginalization. I wanted to learn more about and with the people who were being forced to operate in the fringes of the Irish public education system.

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Nan Joyce, Irish Traveller activist and spokeswoman, 1984. Photograph by Eamonn Farrell. Published in http://www.thejournal.ie, March 1, 2017.

What have you learned from your professional experiences both as an educator, a principal and a researcher in relation to Irish Travellers?

It took me a lot of work to really get it that the Irish Travellers are a people with a distinctive identity and approach to life. And one that I have grown to understand and respect hugely. In 1978 I became principal of a school that had been set up entirely for Travellers. Then, the idea didn’t seem as shocking as now! And, I developed an agenda for it—two long-term aims, and once they were achieved, the school should go.

First of all, I argued that like any silenced group, Travellers needed their own space to find their voice, and to read their world, to reclaim their pride, and reflect on their situation—free, for as long as necessary, of the hostile gaze of the oppressor. I think Liégeois (a French specialist on Roma and Travellers in Europe) had a point when he said that the paradox facing Travellers was that they had to enter the house of the oppressor to gain the tools to end their own oppression.

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Secondly, I was very concerned with an unspoken notion that I saw at least implicit in education policy towards them– that “Traveller culture” is a euphemism for poverty or deviance. A submerged racism. And among Travellers, there was a mirror-version of that—expressed often in the words “how can Travellers all in together learn anything?” I wanted the school to prove that Traveller culture provided a rich space for a proud and distinct school identity and curriculum, and that Travellers all in together could learn, could go from there to any school of their choice, as good as any child or youth from any other school in the town. In my school, the children could be openly Traveller, and they go on into local secondary (=middle/high) schools, well able to state their case, challenge racism and say why it was wrong. But at the same time, I know that there was a larger structural lesson being learned: the students were Travellers, and were being kept separate.ut at the same time, I know that there was a larger structural lesson being learned: the students were Travellers, and were being kept separate.

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However, the mainstream Irish public education system is just not flexible or intuitive enough yet to take in all the different perspectives that ethnicity in Ireland presents. In theory and even in practice, we know where we need to get to. In terms of securing the kind of national and international support necessary to ensure all students, of all ethnicities, have access to fair and culturally appropriate free public education—Ireland– like other European Union member states, like other developing and industrialized and even post-industrialized nations—has a way to go yet. But I think school provision is the wrong place to start.

What has your practice in the field, and your research revealed to you?

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The huge thing I have learned – when approaching populations who have been marginalized to the extent that Irish Travellers are –severely disadvantaged, encountering multigenerational cycles of unemployment…the attitude of the dominant education or academic community is often misplaced. The focus tends to be “Let’s get to the children and rescue them first”. I have learned that it can’t work this way. That this way of remediating a human rights problem, particularly involving children and youth from ethnic minorities, does not work. In my experience here you can’t work with the children if you don’t work with the community that envelops the children. In a human rights framework. If the parents are empowered and enabled, if we make a space where they can explore possibilities beyond what has been allowed or offered to them before– then they—the parents, the grandparents, the family members, the guardians and caregivers from within the marginalized population—will make sure the children get the best that they can get.

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Traveller boys in Dublin, Ireland, 1980. Photograph by Brian Palm.

Our focus needs to shift to not just parental access to education, or parental rights in education, but to creating meaningful and culturally responsive parent-professional interactions where parent-driven professional learning and development can occur. As opposed to teachers working solely with children from populations where they have no prior knowledge or understanding of that population as a living ethnic minority, an evolving culture. Or where they have no professional preparation in critical and culturally reflexive and responsive practices to inquire and learn about the cultures their students and families bring to the classroom.

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How are Irish Travellers impacted by other international realities, such as state, EU- and UN-driven incentives around inclusive and special education, if at all?

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Irish Traveller girl, 1965. Photograph by Alen MacWeeney (b. 1939) from his publication Irish Travellers: Tinkers No More (2007).

In the 1960’s, once it was discovered that Irish Traveller children and youth were not going to school on any kind of a consistent basis, activists campaigned to have resources available to them within the special education system (the only avenue to augmented resources available at the time). This was a strategic move, tempting for well-intentioned educational activists. The objective was to intensively up-skill these children, prior to “absorbing” them in the “normal” classes . But the children didn’t move on. Not until the inclusion movement of the 90’s. And then— (beware of what you pray for, you might get it)—in 2007, the Irish Department of Education produced Notes towards a Traveller Education Strategy. Combining the inclusion principle with the need to cut back expenditure, the Department axed all home-school and resource-teaching provision for Travellers. In future, Traveller children would access resources on the basis of need, not identity. How to separate the good from the bad in that statement!?

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As regards special education generally, since the 1970’s Ireland has become increasingly influenced by international frameworks of thinking across Europe and more globally as inclusive education, in all its variants, has become the name of the game. This too can be a risky thing. The ideal of inclusive education can only be realised if, in the transition from special provision, the child in question loses nothing of the resources and supports they received in that provision. Truly inclusive education, in any context and of any variant, has got to be more expensive. It must entail additional services and supports and professional training that enable the modern, “inclusive” classroom to be truly universal. At a policy level across EU and in Ireland – we continue to see merely locational inclusion – the placement of children with special needs and/or with generational obstacles to education access all thrown together, in the name of inclusive education. This is not building inclusion. This is in fact worse than exclusion. This is a cost-saver.

How do you distinguish between good versus bad, or even ‘not so good’ practices of inclusive education, in the contexts you focus on?

Locational inclusion is merely a body-count. Are they in the same room? All day? If yes—job done. But real inclusion is making sure every child that is in the room owns the place, belongs. They must feel enabled to operate to the best of their ability within that setting. For example, true inclusion would enable children to access a space where they could remove themselves from a larger group, read, or relax, or sail their boat within the majority classroom. Inclusion must be elastic and modular. It must have a continuum of provisions. All students, including Irish Traveller students, need supports. They all need spaces to draw their breath. All children have the right to the tools and the supports necessary to enable them, in their bodies and with their unique strengths and challenges, systemic or biological, to find their way within the majority classroom. That is inclusion.

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How do you describe the educational system in Ireland in general terms?

The general education system in Ireland is too rigid. We should have a continuum of provision so our students, from all ethnicities, with all levels of forms of learning and ability, can operate wherever they need to be to speed ahead or go at their own pace with their own lives. So, if a child needs a lot of physical therapy within the given school-day, they can have this provision within the system and no obstacles in terms of when or how they re-join their peers or class cohort. Our hidden curriculum, not unlike that in the United States, is definitely one of competition and survival of the fittest. At the end of the day you come out of education with or without the piece of paper you need to get into third level (institutes of higher education). There is an undertow separating people for the purposes of economic stratification, that informs the Irish and it seems, most Western public education systems.

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Teachers in the Irish public school system are academically bright, highly qualified, and respected in the community with a very strong tradition of successful unionization.  The primary (in U.S. terms “elementary”) school teaching force is trained to teach all students aged 4-12 years, not bifurcated into “general” or “special”. But they are almost all middle class, white, and indigenous. Given the rapidly growing ethnic diversity in Irish society, and the movement to inclusive education provision (under-resourced of course), Ireland needs a more diverse teaching force, and substantial investment in relevant, high-quality initial teacher education and continuing professional development.

Where else might the Irish public education continue to evolve, in your opinion?

In the Irish public education system, we need to continue to grow in parent-teacher communication and partnerships. Both on a whole school basis and to face the challenges that arise as new shifts and unexpected realities emerge from our societies at large. The huge increase in diversity in Irish society, over the course of my own career and especially over the last 15 years points to the impact that forced migration, including economic migration, has had on Irish society. Along with that front-end challenge, the system of educational organization has to become more flexible, it has to move beyond its own hidden curriculum and narrow cultural focus.

It is good to see the education partnership growing, where parents, teachers and children become partners in the whole education process. The move towards inclusive education is very good, but it is grossly under-funded. Parents and caregivers in Ireland are no longer sitting on the sidelines. They have become much more vocal.

How did your doctoral work inform your understanding of educational practice and educational leadership in the Irish system?

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I did my doctorate in sociology in Trinity College Dublin while I was still teaching. I was a graduate student, a school principal, and a classroom teacher simultaneously. I went into research to try to figure out what were we missing in what Travellers themselves had to say about education, and in how they used language to describe what they were “not”. I love research and I love trying to understand what people say and how that relates to policy.

Equality, equity and the belief that everyone has the right to have access to whatever supports they need to do the best they can informed my position. We should never allow a structural block to limit a person’s potential. That structural block might be a door that isn’t wide enough to allow someone on wheels or using alternative mobility supports to enter, or a system that does not reach out to where people really are. I see no value in just saying “We are very inclusive. So you can now come to us”. If people have centuries of experience behind them, where they know, are told, and experience that they are not welcome – it is not enough for a state institution to just change its mind and say “come on in”. The system must go out to the people, it must reach out to the communities that have experienced marginalization, discrimination, exclusion, oppression – and learn how to include them.

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From the designers of educational curricula all the way up to the policy maker– we must know who we have omitted/are omitting, we must reach out to them, learn about them, inform the system how to fully recognize and include them (Bryan, 2010) – to ever proclaim “nothing about us without us”, or “all means all”, or “everyone is welcome”. This is their right.

Otherwise we just sound patronizing.

Bio

Máirín Kenny, PhD, is a former teacher, principal and educator who has worked extensively and for over thirty years with students and parents from the Irish Traveller community, a recognized indigenous ethnic minority within Ireland. She is currently an independent scholar. Dr. Kenny has conducted commissioned research on equality, disabilities, ethnicity, racism, and sectarianism in Irish education. She co-edited Traveller, Nomadic and Migrant Education (Routledge, 2009) with Patrick Danaher (University of Southern Queensland). She authored a chapter for Education in Indigenous, Nomadic and Travelling Communities (Eds: R. Griffin and P. MacÉinrí. Bloomsbury, 2014); and co-authored a chapter for Self-Study of Teaching and Teacher Education Practices (Eds: AK Schulte & B Walker-Gibbs. Springer, 2016). Most recently, she co-authored a book chapter on special education in the Republic of Ireland for The Praeger International Handbook of Special Education (Eds: M. Wehmeyer & J. Patton, 2017) with Dr. Thérèse McPhillips (St. Patrick’s College, Ireland), Sorcha Hyland (Department of Special Education, University of Kansas) and Dr. Michael Shevlin (Trinity College Dublin, Ireland).

References

Bryan, A., (2010). Corporate multiculturalism, diversity management, and positive interculturalism in Irish schools and society. Irish Educational Studies, 29(3), pp. 253-269. http://doras.dcu.ie/21480/

Liégeois, J. P. (1994). Roma, Gypsies, Travellers. Council of Europe.

Watson, D., Kenny, O., & McGinnity, F. (2017). A Social Portrait of Travellers in Ireland.  The Economic and Social Research Institute, Dublin, Ireland.

A Priority Call for Evidence-Based Practices

By Richard L. Simpson

Barbara Bateman (1994) reminds us there are some issues in our field that are perpetual. Each generation of professionals wrestles with these same basic matters. These themes and issues have taken a variety of forms, yet in general they have had enduring prominence over the past several decades. One issue concerns who should receive special education services (i.e., types and characteristics of children and youth with disabilities and special needs); and who should be teaching these learners (i.e., skills, knowledge of teachers and support staff)? A second salient issue relates to what educators should be teaching. A third long-term issue that has challenged the field for decades is where students should be receiving their education (i.e., full inclusion general education classrooms, self-contained programs, alternative schools, and so forth). Finally, the all-important issue of how we should be teaching, managing and otherwise serving students with disabilities has been a long-standing question.

This commentary focuses on the how topic. Succinctly stated, identifying and using suitable methods with fidelity is essential; and how we teach children should receive priority consideration as a research topic and in matters related to educator practice, professional development and preparation. Achieving general consensus on the importance of effective practices is relatively easy. Indeed, who within our profession or stakeholder groups would argue against working to ensure that teachers are highly skilled and knowledgeable in selecting, using and evaluating the most effectual instructional, management and other methods; and that conducting research leading to even more efficient and effective methods is crucial? Opposing such a declaration would be tantamount to arguing against the need for a more collaborative and united Congress or disagreeing that all countries should aggressively seek ways to support the basic rights of all people. Yet, apart from general consensus on the need for special educators to consistently use effective educational practices with their students (also of course that there is a need to create a more cooperative Congress and just world for all people), there is less than full agreement on particular issues linked to effective practices. There is also little indication this subject is a true priority for many educators. Thus, in spite of general (and often unenthusiastic) consensus among stakeholders on the need for use of maximally effective strategies, major obstacles challenge this enterprise. Achieving agreement on even the most basic questions, including the meaning and characteristics of effective practices and how to facilitate a more effective-practice minded profession, have been major challenges.

Selecting and using effective educational practices means using evidence-based methods (this author recognizes this is not a universally held interpretation). Variable terms are used to describe so-called effective educational procedures, including evidence-based methods and practices, scientifically supported interventions, and research-validated methods. These terms generally refer to methods and practices that have been shown to be efficacious based on objective and empirically valid and data-supported research. Shared features among evidence-based methods include a reliable and scientifically-valid evaluation or research design, clearly explained procedures, scientifically-supported evaluation methods, and peer-review vetting of claims (Cook, Tankersley, & Landrum, 2009). Unquestionably there are alternative evaluation procedures for determining if a method is an effective educational practice. In some cases informal, anecdotal and qualitative approaches have been used to make such judgments. Without question this information can often be constructive and useful. However, in the final analysis and as a definitive test of effectiveness, objective data-based scientific procedures are required. Only by adhering to such a process will the field be in a position to objectively identify and appropriately use those strategies with the greatest potential to positively advance the knowledge and skills of learners with disabilities and create maximally clear pathways to the best outcomes. Additionally, adopting and using evidence-based methods within all spheres of special education is an indispensable step towards developing and improving the image and overall professional standing of the field of special education.

Adopting a “best-practice” model requires that educators commit to learning and correctly using methods that have objectively and scientifically demonstrated capacity to consistently produce the best outcomes. Simply stated this requires knowledge of assets, strengths and limitations of particular methods; and how each method aligns with the needs and characteristics of particular types of learners. It also involves accepting that some methods for children and youth with disabilities are superior to others relative to achieving empirically and scientifically validated outcomes. Finally, this mindset involves recognizing that the educational landscape is awash with unproven and commercially-motivated methods that have limited capacity to bring about socially valid gains. The ability to make unbiased and rational judgment about methodologies and a willingness to make decisions on the basis of student’s interests rather than ideology, personal preference and convenience is an essential step required of educators who aspire to be effective-method practitioners.

Identifying methods that have effective-practice potential is not a Herculean task, however it is not easy. Use of three guiding questions can be helpful in judging methods: (a) what proof supports purportedly effective interventions and methods? (b) How will a selected intervention or method be evaluated? And (c) to what extent does an intervention or method fit an individual learner’s unique needs? The first question focuses attention on the scientific and objective evidence supporting a method, including the extent to which participants in research studies objectively benefited from a method; and the degree to which one’s own students or learners are similar to the research participants. This first-question process requires the ability to discriminate between scientifically valid research methods and products and methods lacking these characteristics. This translates as the ability and willingness of educators to interpret professional documents, peer-reviewed scientific journals, and related reports. This prerequisite skill has clear teacher education implications: Professional educators who aspire to consistently and independently use evidence-based methods with their students need to be taught to discriminate between objective and scientific research reports and the pseudoscience often found in non-peer-reviewed materials (e.g., anecdotally-based web reports, marketing and promotional brochures) and methods whose only support is personal testimony.

The second guiding question linked to prudently identifying evidence-based methods requires educators and other stakeholders to evaluate (or plan for evaluations) of methodologies and interventions adopted for use (or considered for adoption) with individual students. This includes such issues as: (a) what target behaviors will be measured as evidence of progress (e.g., classroom management problem behaviors such as out-of-seat without teacher permission, classroom attention to task, academic subject progress)? (b) Who will conduct the agreed upon evaluations and how often will the methods be evaluated? (c) What benchmarks or criteria will be used to determine if a method is successful and utilitarian and whether it should be continued or modified? This guiding question recognizes the importance of evaluating methods and interventions with particular students. Independent of the professed and reported benefits of a particular method and its supporting credentials, this guiding question reminds stakeholders that they must objectively assess individual students’ responses to particular strategies. That is, the suitability and utility of even the most scientifically valid method must ultimately be based on the outcomes it produces with individual learners.

The third guiding question focuses on the qualitative merits and shortcomings of methods and interventions under consideration. It prompts stakeholders to carefully consider which methods and supports have the greatest potential to positively affect individual learners, especially relative to contextual considerations, setting variables and similar factors. This theme relates to the perceived match of various methods and interventions with the needs, values, life styles and other social validity considerations of individual students and families. Consideration of these variables assists educators and stakeholders understand that, independent of the reported research that supports particular methods, qualitative factors (e.g., how a student’s predilections, personality, idiosyncratic features, and family circumstances might affect or interact with use of a particular intervention or method) need to be given serious consideration. The guiding features of question 3 clearly relate to matters of social validity. Educators and other stakeholders are asked to consider potential factors linked to use of particular methods that often fall outside the boundaries of traditional efficacy research. Because on their differing responsibilities, roles, experiences, attitudes, individual circumstances, and so forth, educators, related service professionals, parents and other stakeholders associated with children and youth with disabilities will almost surely have different ideas and perspectives about which methods hold the most promise. Related to these differences, discussions linked to social validity matters provide methodology-discussant participants an opportunity to focus on topics such as quality-of-life factors, perceived practical benefits of particular methods, and students’ preferences and characteristics related to adopting certain approaches. These discussions are not intended to replace other considerations related to judging methodology options, especially those conferences that primarily focus on empirical scientific themes. Rather, these discussions are intended to broaden the evaluation standards by including informal and qualitative considerations as a part of the deliberation process. This guiding question also allows stakeholders to consider negative side effects (e.g., a particular strategy might draw excessive attention to an adolescent who is extremely shy); challenging circumstances (e.g., a particular approach requires extensive one-on-one instructional time, and stakeholders agree a particular student has performed poorly in the past when removed from ongoing classroom activities); or conditions associated with using a method, such as financial and quality of life risks for a student or family.

References

Bateman, B.D., (1994). Who, how and where: Special education’s issues in perpetuity. Journal of Special Education, 27, 509-520.

Cook, B. G., Tankersley, M., & Landrum. T. J. (2009). Determining evidence-based practices in special education. Exceptional Children, 75, 365-383.

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Richard L. Simpson is Professor of Special Education at the University of Kansas where he has directed numerous University of Kansas and University of Kansas Medical Center demonstration programs for students with autism spectrum disorders and other disabilities and coordinated a variety of federal grant programs related to students with autism spectrum disorders and other disabilities.. He has also worked as a special education teacher, school psychologist and coordinator of a community mental health outreach program.  He has authored numerous books, articles and tests on a variety of topics connected to students with disabilities. Simpson is the former senior editor of the professional journal Focus on Autism and Other Developmental Disabilities.  Awards include the Council for Exceptional Children Research Award, Midwest Symposium for Leadership in Behavior Disorders Leadership Award, Autism Society of Kansas Leadership Award, and numerous University of Kansas awards and distinguished roles, including the Gene A. Budig Endowed Teaching Professorship of Special Education and Ingram’s Icons of Education Award.

Thinking Differently

My original intent for this blog was to pick up on the recent themes of partnership and coaching. My twist was to discuss partnerships with parents whose children are enrolled in early intervention. I intended to discuss how coaching with parents is an intervention that fits well within the construct of partnership, is situated in family systems theory and more precisely, builds upon the work of our beloved Bronfenbrenner.

And then… as has happened often over the last four years… my major advisor, my mentor… Dr. Ann Turnbull said something that took over my thinking and now I have to write about it before I can write about partnerships with parents.

Dr. Turnbull along with some other colleagues and I recently engaged in a discussion about a video from The Center on the Developing Child from Harvard University titled Building Adult Capabilities to Improve Child Outcomes: A theory of Change,http://developingchild.harvard.edu/resources/multimedia/videos/theory_of_change/. The video discusses toxic stress and defines it as the prolonged activation of stress response systems in the absence of protective relationships resulting in developmental delays and later health problems – for a lifetime. Toxic stress is visually illustrated through sketches of a crane piling up one concrete block after another labelled with family risk factors (e.g., poverty, neglect, mental illness). I had been using the video in training early intervention providers because of the very strong message it contains about building adult capabilities. The intention was to support the intervention of coaching within partnerships with families as a capacity building intervention. What I did not focus on was the impact of the term, toxic stress, and the impact of the visual used in the video, despite its overall message.

The first reaction from my mentor was: “I feel that it is a “pile-up” of negatives against families who often are already negatively perceived by the service system. I also think the term toxic stress is very pathological. I think the drawing engages the viewers. “ And that was it. Purposely short, I am sure intended to make me think. So true to form for me, my first reaction was to…. create an argument which justified my use of the video. My argument was that the word was already widely used. If it is out there, we have a duty to discuss the term and help people understand it so they do not use it as a way to judge families. Being a good mentor Dr. Turnbull let me have my perspective, said some kind words back, and left it there. However, it did not end there. It has been eating at me ever since.

So I began to think and reflect and realize that she was right. Not only was she right but I actually held the same belief but I wasn’t paying enough attention to what I was doing. I was not thinking deeply enough about my actions.

I remembered the first time I heard the term, toxic stress, five years ago and how offended I was, not only personally but also on behalf of all families experiencing challenging circumstances. I grew up in a family that experienced every risk factor that is associated with toxic stress and much of the literature on the subject strikes close to home. My first reaction was to view this term as one more way to categorize and judge families, to judge kids and their abilities, perhaps a reason to not expect success. The term threw me back to sitting with my mom in the welfare office and hearing the surprise in the workers voice when she told my mom she had noticed in the newspaper that I had made the A honor roll. Her shock clearly communicated to both my mother and me that she would not expect this type of child from my family.  Now, here I was, showing videos that use this term, toxic stress, and promoting the concept that had so offended me as a child.

Dr. Turnbull is not the only faculty member who made me assess everything I say and everything I do against the set of beliefs I profess to hold and the theories I profess to subscribe to. Professor Rud Turnbull has an uncanny knack to push doc students to dig deep and know what it means to have their practice match their beliefs about persons who experience disability. He challenges us as students to realize that if we truly believe that every person is worthy, and then it must be apparent in the work we leave behind.

Similarly, Dr. Winnie Dunn’s helped me to know myself, my beliefs, the theories I hold as truths; and then to match my words and actions to these and ultimately to carry these into my research and my writing. Dr. Skirtic introduced ideas of civic professionalism urging us to compare these ideals with the practices of our profession and to align our actions with the ideals we hold dear and then to be willing to become the agent of change. Dr. Wehmeyer challenged each of us to articulate the theories with which we align and to match our actions accordingly as we would be called upon to do so as we moved from our PhD programs into the wider world.

“As a doctoral student, you will learn to think in a very different way than you do now” is a phrase I remember being told as a first year doc student. I remember thinking… we shall see. I have spent my career being what I considered a good thinker, a reflective practitioner, and leader. How would this program teach me to think differently? My professors and advisors have changed my thinking and thus, my actions to make a positive impact on my community. At this point, I know it’s good to be uncomfortable, to reflect and understand if my actions are aligned with my beliefs. When they are, I will truly be of service. I leave this program having internalized these values and skills I learned from this wonderful faculty.

To think differently enough to truly be of service. The trick will be to keep this value and skill a part of who I am once I leave the program and not forget the lessons learned at the hands of the masters.

 

References

Harvard University, Center on the Developing Child. (2013). Building Adult

Capabilities to Improve Child Outcomes: A Theory of Change. Retrieved from

http://developingchild.harvard.edu/resources/multimedia/videos/theory_of_change/

Peggy Kemp, M.S., is a doctoral fellow at the University of Kansas Department of Special Education and Beach Center on Disability, funded through a U.S. Department of Education OSEP Leadership Grant, Families, and Policy under Dr. Ann Turnbull. Peggy also works as technical assistance specialist for the Part C programs in Kansas through the Kansas Inservice Training System, University of Kansas. Peggy’s areas of specialization are early intervention, infant mental health, families, and policy.

Partnering with Military Families

Military families face many of the everyday challenges that civilian families experience.  Hectic careers collide with child rearing, family time, rest, recreation, and community involvement.  The stress of deployment and frequent moves compound those everyday challenges.  Military families’ children can face learning challenges that come from inconsistencies in education standards across states and the complications of dual military family careers.  Families can also encounter the strains of recovery from physical injuries, and/or post-traumatic stress disorder due to combat.  While all these experiences can bolster children’s resilience and comfort with change, along the way, parents and children need support.

 One Family’s Deployment Story

A family friend and his wife were a dual military career family and only fifteen months after they married he was deployed to Iraq.  When he left the comfort of home his first son was nearly two months old.  During the deployment phase, their young family experienced many of the major stresses of life.  They celebrated the birth of a child, mourned the loss of both grandfathers, and purchased of a new home.  Then, Hurricane Katrina damaged the new home, and the new mother lost her job.  Although they received support from family and friends, it was a difficult time for their family even after my friend’s deployment overseas had ended.

The Impact of Deployment

This family experienced the effects of war that we civilians read about.  There were bouts of depression, anxiety, withdrawal symptoms and behavioral concerns. Imagine the emotional strains of helping a child work through violent outbursts taken out on siblings or family pets.  Consider daily life with adults dealing with emotional distress.  A depressed parent might stop eating or lose interest in communicating, even with his or her children.  Consider the toll on family life when parents’ anxieties prevent them from being in crowds, make them fearful of loud noises, and result in nightmares.  Coping mechanisms can take many forms.  Children may stop expressing their emotions or even talking; parents may lose themselves in video games, hobbies, and other obsessive behaviors.

Many military families have similar stories about the effects of deployment on their families.  If these are typical military family stories, then picture the stress a military family may encounter when the children in the family have special needs and abilities.  Consider fitting multiple hospital trips into already packed days.  Moving schools means learning how to navigate special education services in yet another state.  Each move may mean additional evaluations.  Some military families contend with the fear of losing rank or a promotion due to their requests for frequent leaves.

Managing Day-to-Day Life

In addition to sharing hardships, other friends have revealed their strategies for managing day-to-day life.  Families were eager to describe how they helped their children cope with deployment.  Their lists included reading children’s books, video recordings that the deployed parent made before leaving, video recordings of the deployed parent reading bedtime stories, and Skype phone calls.  One parent disclosed that her daughter has extreme anxiety when she sees an army uniform.  Uniforms are a signal that her mother is leaving for extended periods.  To prevent the anxiety, the mother changes clothes when she gets on base.  Other mothers talked about just pushing through until the end of a deployment.  They rely on their tenacity to manage the family’s stresses and complete their missions at home while waiting for their spouses to return.

Needs of Military Families

The military has some resources available to help with these needs.  However, some families do not access available military resources.  Instead, they rely on family.  Others cite the stigma associated with accessing military support services.  Still others worry about being passed over for promotion.  As I listen to the stories, I am amazed at each family’s coping strategies, resilience, and strength.  Military families need educators to walk beside them on their journeys, connect them with resources, and direct them toward appropriate programs that meet their unique family needs.

Today, lengthy and multiple deployments pose many challenges for U.S. military children, families, educators, and community members (Park, 2011).  Out of the 1.2 million school-aged military children, only 86,000 attend Department of Defense military schools (Park, 2011).  That means that public schools are educating over a million children of military families.  Local schools need information about military families.  Teachers and other practitioners who work daily with children need to understand more about the practices that would support the social-emotional, mental health, and academic needs of military children.

Early childhood research is particularly important because approximately half a million military children are under the age of five.  This is a critical age for child development.  “Failure of the school community and family to identify and help military children cope with emotional needs in the school setting can lead to conflict and risk of poor educational outcomes” (Fitzsimmons & Krause-Parello, 2009). Early educators may need additional professional development in order to be comfortable in supporting families through all phases of deployment.  My passion is to research the preparation of early childhood educators to support military families in a culturally responsive and strength based manner.

One Family’s Post-Deployment Needs

Eight years after deployment my friend has two sons and a daughter all under the age of eight.  One son is entering second grade, the other started kindergarten this year, and his youngest daughter just learned to walk.  As the first month of school begins today my friend’s wife is transitioning into the single parent role because my friend is away for a month long military training.  Tonight one son was struggling to finish his homework (2+hours), one son couldn’t stop talking about school, and their baby girl interrupted our call with a cry for Daddy several times.  As the cell phone disconnected, I wondered if the teachers knew they were a military family.  Had they had training to work with military families?  Do the boys’ teachers understand the importance of emotional literacy development and social emotional support? What would my friend’s wife need most in the next month from the boys’ teachers?

Top Ten Insights for Teachers Working with Military Families

10.  Have “Great Expectations,” they will strive to meet them.

9.  Use their strengths to support them in achieving their fullest potential.

8.  Provide some extra encouragement and motivation.

7.  Help them understand every child is at a different level and accept who they are  no matter the type of disability they may or may not have.

6.  Give them multiple activities to express their knowledge other than written  assignments.

5.  Take time to get to know each child’s unique gifts and needs.

4.  Ask a military service member for insights into the military culture.

3.  Ask the family about their goals for their children and family.

2.  Value and encourage the family’s participation in school activities.

1.  View the family with a “strength based” lens and guide them in using those strengths to accomplish great things together.

Why Should We Partner with Military Families?

With every challenge, each military family taps new strengths and generates unique ideas for overcoming those obstacles.  Imagine how military families could help educators become more culturally responsive in their work with military children and families.  Imagine if we focused on the military families’ strengths to help the family: improve family and child outcomes, build resilience, and achieve their long term goals with a sense of fulfillment (Bennett, Deluca, & Bruns, 1997; Bennett, Lee, & Lueke, 1998; Trivette, Dunst, Boyd, & Hamby, 1996; McWilliam, Toci, & Harbin, 1998; Soodak et al., 2002).  Imagine if we knew what educators needed in order to better serve military families.  By engaging in conversations with each other we can learn how to better work together.  As one military general stated, “This is a matter of national security.  Soldiers should not have to worry about the education and mental health of their children while serving on the battlefront.”

 References

Bennett, T., Deluca, D., & Bruns, D. (1997). Putting inclusion into practice:       Perspectives of teachers and parents. Exceptional Children, 64(1), 115-131.

Bennett, T., Lee, H., & Lueke, B. (1998). Expectations and concerns: What mothers and fathers say about inclusion. Education and Training in Mental Retardation and Developmental Disabilities, 33(2), 108-122.

Fitzsimons, V. M., & Krause-Parello, C. A. (2009). Military children: When parents are deployed overseas. The Journal of School Nursing, 25(1), 40-47.

Park, N. (2011). Military children and families: Strengths and challenges during   peace and war. American Psychologist, 66(1), 65.

Soodak, L. C., Erwin, E. J., Winton, P., Brotherson, M. J., Turnbull, A. P., Hanson, M. J., & Brault, L. M. (2002). Implementing inclusive early childhood education: A call for professional empowerment. Topics in Early Childhood Special Education, 22(2), 91-102.

Trivette, C. M., Dunst, C. J., Boyd, K., & Hamby, D. W. (1996). Family-oriented program models, helpgiving practices, and parental control appraisals.     Exceptional Children.

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Audra Classen, MS.Ed., is a doctoral candidate in the Early Childhood Unified program at the University of Kansas and works as a Graduate Research Assistant on an IES curriculum development project, CSS+, as well as a Graduate Teaching Assistant completing student teacher supervisor for pre-service educators.  Audra was a practicing ECSE teacher for years in Kansas working primarily in district early childhood special education classrooms with 3 to 5 year old children. Her interests and expertise lies in supporting young children’s emotional literacy development, developing social emotional curriculum and interventions, teaching practitioners to utilize emotional literacy assessment techniques, and developing culturally responsive services for military families and their young children.  She desires to continue to prepare early educators, general educators, and para educators to differentiate and individualize supports for children of all abilities.

Good Citizenry 101

My son was diagnosed with Asperger’s Syndrome  (AS) when he was five and a half.  Typically, children that young are not diagnosed with  AS. AS is said to be a high-functioning form of autism where the keys to diagnosis are: (a) short self-stimulatory behaviors rapidly repeated, like flapping, spinning, and rocking; (b) social awkwardness that includes difficulty reading social cues, understanding voice tone, and interpreting facial expressions; and (c) late development of speech.  The symptoms of AS were pretty obvious to the team that worked with him, as it was to us, his parents.

We wanted to get some sort of diagnosis so we could explain to teachers and family.  We also wanted to be able to share with them researched strategies proven to be effective for young children.  When a diagnosis of AS was given we made a decision to never use the “A” word at our house when discussing him. Our 14-year-old daughter has an idea of what labeling might do since she has read some research material I used while getting my master’s degree in special education.

Most of our friends and family are on board and “get” my son. They have read books and articles to be supportive.  Additionally, we see these same supportive friends and family implementing techniques my husband and I use daily.  However, not everyone in our life has come to terms with the AS diagnosis. One family member thinks that we should not let him bounce around the house stimming, although it helps him calm down and helps him organize his thoughts and feelings.  Another family member suggests he is only acting that way around me.

Since receiving the AS diagnosis seven years ago things have settled down. Tantrums are rare and he has made a couple of very good friends. They are not his age, but he is happy.

I teach special education.  I live special education at home with every statement I make to my children. Everything is designed to teach empathy and encourage good citizenship. My husband Jeff and I work together and would not change a thing about either of our children. Both of our children are seen as kind-hearted, thoughtful, and helpful. Since my son does seem to be so “normal” on the surface, people are shocked when something happens.

Such a surprise occurred two years ago at our citywide BBQ contest, where thousands of people come. My kids go every year and hang out in a tent with us.  My daughter will walk around with her cousins.  However, my son is stuck either to my husband and me like glue, or plays his DS in the corner of the tent.  After five and a half hours of being in the tent on this BBQ day, I knew it was time to take him home. I’d like to say it was my stellar mommy skills kicking in, trying to avert a tantrum.  However,  I suspect I decided to take him home due to the huge tears he was able to produce (he is able to spew tears if he thinks of something sad- real or imagined) proving he was ready to go home. All was well, the backpack was loaded with his electronic devices and games, the kisses and hugs were given good bye, and we were on our way.

The exit with a bit of a drop-off was about twenty yards past our tent.  You would think that tragedy struck from the blood-curdling scream my son made when he fell down at this drop-off. We attracted about a hundred people from the scream. The police walked over to check on us. One man was certain my son needed an ambulance. A nurse stopped by to check on us. She asked if he was ok, I started to tell her, “He’s ok, he just has A…..” She stopped me and said she understood.  Immediately the nurse started getting people to go away asking them not to hover and stare.  I will forever remember her not allowing me to say that to her.  She did not need an explanation and my son did not need an excuse for his behavior.

I am holding my son in my lap in such a way to administer pressure to his torso, a technique that helps him feel more comfortable when he is upset, sad, or scared.  Meanwhile, I am insisting to everyone that he is fine.  I asked the man, who suggested my son needed an ambulance, to go away since he was just staring at us with his group of friends.  Similarly, to the people passing by I replied, “his knee is only scraped”.  To the police, “there is no need for police intervention”.  At this point I had tears running down my face.  How do you explain any of “this” to a group of strangers?  How do you say “this” is part of his thing?  “This” is part of his hyper-sensitivity to pain (along with light and sound).  “This” is part of who he is but most of the time he is smiling and happy. How do you explain those things to a bunch of people who are whispering and pointing?

Several minutes have gone by, my daughter has run back to our tent to retrieve a cousin, band aids, Neosporin, wipes, and a tissue (for me).  My niece is wiping off his knee and he is still screaming.  People are still staring.  The nurse had tried to get on her bus to go back to her car, but came back when another round of people came to gawk.

My constant coos of “you’re fine” did not help.  There is no getting a child with perseveration issues like this to just stop of his own accord.  I calmly suggested to him that he needed to stop screaming because the police thought I was hurting him or his leg had fallen off.  Since neither had happened, he needed to not scream quite so loudly. Surprisingly, that angle worked.

Once he was bandaged (three small band aids). We gathered our things and hobbled home. We only live a couple of blocks away. He was even able to run across the bigger street (he gets nervous in the road and needs to get across quickly).

On the way home, after my children and I had settled down, I thought it might be a good time to discuss with my son how the screaming led all the strangers to believe that his leg had fallen off.  He said he would try not to freak out like that again.  I thought it important to address the incident again in the morning.

“I know you were tired. I know you wanted to come home. Can we think of some things that we could do to not freak out when you get hurt?”

He replied, “I am not good at not freaking out when it hurts super bad and it is bleeding. You know if that does happen again I will start crying again.”

I answered, “But, can you try not to scream?”

Nodding his head yes, “I will try not to scream.”

This was not a tragedy, but I laid awake that night for hours trying to think of ways I could have avoided that huge melt-down and crowd-gathering event.  One, I could have stayed with him at home.  Two, I could have hired a sitter (though the whole town was at the BBQ). Three, I could have taken him home earlier.  Four, I could have not cried in public.  I realized the tears were an outward demonstration of several feelings.  First, I was embarrassed that I, all knowing self-proclaimed wonder-mom, had lost control.  Second, in the 5 minutes my son and I were crying (his a bit louder than mine) I mourned the inability to get strangers to accept my child was different (to their standards).  Finally, there was some anger or frustration that people pointed, whispered, and stared.  I did not understand this as I had taught my own children it was inappropriate to point, whisper, and stare in “Good Citizenry 101”, apparently the nurse took the class too!

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About Heather G. Wolf

I’m a second year doctoral student at the University of Kansas.  I am studying technology interventions in the special education department in addition to my part-time job as a special educator and my full-time job as a mother.

Size Matters and Stealing Can Be Good

Long ago, my Granddaddy said that the best things said are said with precision and brevity. His learning objects often were Shakespearean: “He who steals my purse steals trash…” (Othello), and “Neither a borrower nor lender be…” (Hamlet).  Today our compulsion to communicate with words and video, and the technology and social demands driving it, favor clarity and brevity if we hope to be effective teachers and leaders. Even scholars use social media to augment conclusions from findings published in scientific journals, generally paragons of neither brevity nor clarity, to get word of their work out.  Today’s proliferation of tweets, twits, twerps, and blogs demonstrates our cognitive preference for clear and rapid sensemaking of what we read, see, and hear (see Klein, Moon, & Hoffman, 2006a, 2006b).

I’ve always been a less-is-more kind of guy. Keep it simple but, if detailed complexities are required, knock yourself out.  Consider Columbia sociology professor Gil Eyal’s (2013) 44-page article advancing the idea that, for several decades, highly contextualized knowledge socially transmitted among numerous professional and lay groups helped form an enormous treatment culture around autism. Arguing a point of view about complex issues often justifies a few thousand words.

Presumably Eyal needed all of his words but most of us don’t.  Granddaddy said one precise word is worth 100 amorphous ones. Years later, in an editorial for Education Week, then Boston University education dean Edward Delattre wrote: “Words and phrases used repeatedly without reasoned consideration are inert; powerless to capture reality; doomed to obscure truth, complexity, and subtlety; and therefore destined to mislead those who take them as substitutes for thinking” (Delattre, 1997, p. 36). Little precision and lots of parroting characterize much of the literature produced these days. Our conversations are worse: lots of acronyms, lots of banalities (hearing, “in terms of” makes my skin crawl), and lots of insular “club” phrases (“He’s a Tier 2 kid, he definitely needs to be IEP’d.”) isolate rather than unify us across our professional communities because people outside our exclusive clubs probably don’t understand what the hell we’re saying.

This is unfortunate in two ways.  First, the reader’s effort is for naught since s/he takes little away from the brief connection s/he has had with you the writer.  Worse, you have not given the reader an opportunity to steal from you (see Brown & Duguid, 1996).  Learning theorist John Seely Brown and his colleagues advanced constructivist theory with their work in “situated cognition” (Brown, Collins, & Duguid, 1985, p. 32), wherein they regard learning in the absence of useful application and enactment contexts as suspended in molasses. British mathematician, Alfred North Whitehead, called knowledge imparted without regard to context “dead knowledge…(and) inert ideas” (1929, preface), and “scraps of information never connected or utilised” (Whitehead, 1929, p. 64).

In contrast, Brown and colleagues view learning as highly contextualized around the learner’s engagement in his or her own problem-solving and his or her intuitive urge to “steal” what s/he needs to know in order to solve the problem or perform the task. We teach and write expecting learners and readers to absorb the world as we view it but, instead, they assimilate the information as imparted, and either dismiss it or accommodate it to the specific contextual demands they face.  We don’t typically know what those demands and accommodations are.  Granddaddy would say that, to assume we do or can, is arrogant, egotistic, and perhaps even narcissistic.  Instead, our responsibility as writers and teachers is to be precise and succinct, allowing learners to do what they do because, then, they are free to steal what they need from us without fear of lock-up in the jail of wordy obscurity.

References

Brown, J.S., & Duguid, P. (1996). Stolen knowledge. In H. McLellen (Ed.). Situated learning perspectives (pp. 47-56). Englewood Cliffs, NJ: Educational Technology Publications.
Brown, J. S., Collins, A., & Duguid, P. (1989). Situated cognition and the culture of learning. Education Researcher, 18, 32-41.
Delattre, E. (1997, January 22). Psitticism and dead language, Education Week, p. 36.
Eyal, G. (2013). For a sociology of expertise: The social origins of the autism epidemic.  American Journal of Sociology, 118, 863-907.
Klein, G., Moon, B. and Hoffman, R.F. (2006a). Making sense of sensemaking I: Alternative perspectives. IEEE Intelligent Systems, 21(4), 70–73.
Klein, G., Moon, B. and Hoffman, R.F. (2006b). Making sense of sensemaking II: A macrocognitive model. IEEE Intelligent Systems, 21(5), 88–92.
Whitehead, A. N. (1929). The aims of education and other essays. NY: Macmillan.

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Earle Knowlton is an Associate Professor in the Department of Special Education, specializing in human-computer interaction as it pertains to teacher quality and development. He is also Principal Investigator for the Social Tele-Coaching Project, a 3-year research grant funded by the Institute of Education Sciences, that is examining the viability and potency of remote, covert coaching of students with emotional and behavior disorders who are learning the general education curriculum in general education classrooms.

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