Emergency Preparedness
Are You Prepared for an Emergency? In Florida, during hurricane season we hear this question repeatedly, but how many of us are really prepared? What about a fire escape plan from your home? Experts agree that disaster plans can save lives. Consider the following list of ideas when preparing an emergency plan for a person with a disability. It's a good idea to share the plan with a designated support team to assist you in a real emergency:
• Each member of your household needs enough water, food, and medicine to last for 72 hours in the event of emergencies that disrupt electrical and water systems.
• Contact your local fire department and provide a current list of names and locations of all people
* needing assistance in your home. The list should be kept current and updated.
• Know how to access all the exits in your home, at school or at work, and practice your escape.
• Practice using evacuation devices and unforeseen situations, such as blocked paths or exits.
• Practice dealing with different circumstances. Will you be able to independently evacuate? What supports do you need to evacuate swiftly and safely?
• Do you need extra medications, supplies or a spare set of eyeglasses?
* Be sure to have a copy of your important papers available to be grabbed quickly. This includes a current copy of your child’s IEP.
• Carry your emergency plan at all times with instructions of what to do in an emergency
Sunday, June 22, 2008
Managing Celiac Disease
Wheat is the grain on which Western civilization was built. It's been
used for thousands of years as the foundation of our diet. But 1 out
of 100 Americans has a condition called celiac disease, which is an
intolerance to wheat, barley and rye. Its symptoms can be subtle, but
if you don't stick to a gluten-free diet you could be damaging your
body and not even know it. More from Mayo Clinic.
http://podcasts.mayoclinic.org/2008/06/16/managing-celiac-disease/
used for thousands of years as the foundation of our diet. But 1 out
of 100 Americans has a condition called celiac disease, which is an
intolerance to wheat, barley and rye. Its symptoms can be subtle, but
if you don't stick to a gluten-free diet you could be damaging your
body and not even know it. More from Mayo Clinic.
http://podcasts.mayoclinic.org/2008/06/16/managing-celiac-disease/
Managing Celiac Disease
Wheat is the grain on which Western civilization was built. It's been
used for thousands of years as the foundation of our diet. But 1 out
of 100 Americans has a condition called celiac disease, which is an
intolerance to wheat, barley and rye. Its symptoms can be subtle, but
if you don't stick to a gluten-free diet you could be damaging your
body and not even know it. More from Mayo Clinic.
used for thousands of years as the foundation of our diet. But 1 out
of 100 Americans has a condition called celiac disease, which is an
intolerance to wheat, barley and rye. Its symptoms can be subtle, but
if you don't stick to a gluten-free diet you could be damaging your
body and not even know it. More from Mayo Clinic.
How does SID overlap with Down syndrome?
How does SID overlap with Down syndrome?
Signs of sensory processing problems of a child with DS are often
similar to that of a child traditionally labeled with sensory
integration dysfunction:
Delays in speech, language and motor skills
Delays in learning
Poor self-concept
Poor self-control (impulsive)
Low muscle tone
Poor body awareness
Over reaction to touch, sound, sight, movement (avoids)
Under reaction to touch, sound, sight, movement (seeks)
Resistance to change
Poor transitions
Poor social skills
Poor balance
Clumsy/awkward movement
Unusually high or low activity level
Poor behavior organization
Children with DS often exhibit characteristics which impact motor
skills such as hypotonia (low muscle tone), joint laxity, difficulty
sensing joint position and movement, hypo or hyper responsivity to
touch, discrimination, and integration of touch input. The motor
performance and behaviors of a child with DS can also be impacted by
sensory processing deficits including deficits in sensory
registration, modulation, vestibular, proprioceptive, tactile, visual,
and auditory processing.
http://www.ndsccenter.org/resources/documents/sensoryIntegration.php
Signs of sensory processing problems of a child with DS are often
similar to that of a child traditionally labeled with sensory
integration dysfunction:
Delays in speech, language and motor skills
Delays in learning
Poor self-concept
Poor self-control (impulsive)
Low muscle tone
Poor body awareness
Over reaction to touch, sound, sight, movement (avoids)
Under reaction to touch, sound, sight, movement (seeks)
Resistance to change
Poor transitions
Poor social skills
Poor balance
Clumsy/awkward movement
Unusually high or low activity level
Poor behavior organization
Children with DS often exhibit characteristics which impact motor
skills such as hypotonia (low muscle tone), joint laxity, difficulty
sensing joint position and movement, hypo or hyper responsivity to
touch, discrimination, and integration of touch input. The motor
performance and behaviors of a child with DS can also be impacted by
sensory processing deficits including deficits in sensory
registration, modulation, vestibular, proprioceptive, tactile, visual,
and auditory processing.
http://www.ndsccenter.org/resources/documents/sensoryIntegration.php
General Education Teacher Checklist for working with an ESE Student
http://www.pattan.net/files/ProgMon/GenEdTeacherInterview.pdf
Where Differences Matter
Where Differences Matter
Posted on: Saturday, 14 June 2008, 03:00 CDT
By Kozleski, Elizabeth B Engelbrecht, Petra; Hess, Robyn; Swart, Estelle; Eloff, Irma; Oswald, Marietjie; Molina, Amy; Jain, Swati
U.S. education policy acknowledges the troubling differential rates of special education identification and placement for students who are culturally and linguistically diverse by requiring states to review annually student identification data from all local education agencies to identify and address disproportionate representation. Yet, little is known about the interaction between families that are culturally and linguistically diverse and the service providers they encounter at their local schools. The authors examine those relationships in South Africa and the United States, two countries where the legacy of racism lingers in the ways in which school personnel and families negotiate differences in how children are viewed, assessed, and offered support for learning needs. In both countries, sustained efforts from families and school personnel were needed to develop supports and services that worked well for students with disabilities and their families. Keywords: disabilities; special education; families; comparative studies; children; parents
This article provides a cross-case analysis of a research study conceptualized and implemented simultaneously in South Africa and the United States (Engelbrecht, Oswald, Swart, Kitching, & Eloff, 2005; Hess, Molina, & Kozleski, 2006). We began our work together with a shared interest in understanding how context and culture influence and shape the ways in which families access and experience educational systems when their children have disabilities. Using a cultural-historical activity theory lens (Rogoff, 2003), in this article we provide a comparative analysis of our research findings.
Cultural-historical activity theory has a robust history stemming from the work of Vygotsky and other Russian researchers, who sought to examine how context and adults played a role in mediating the development of metacognitive skills, particularly in young children. A variety of researchers began to explore the role of social and cultural mediation itself and to analyze potential mediators in the environment. As Michael Cole and others elaborated these ideas, the interplay between internal psychological characteristics and external mediators was extended to include functional systems of artifacts and participant structures (Cole, 1996; Rogoff, 2003; Wertsch, 1995). Activity theory provides a framework for researchers to understand how families, students, and professionals construct their local practices, interpret rules, and organize their work in the context of complex sociocultural characteristics that are themselves dynamic.
The work of researchers such as Ferguson (2002), Kalyanpur and Harry (2004), Harry and Klingner (2006), and Nelson, Summers, and Turnbull (2004) provides detailed understanding of how family and professional interactions have played out in settings within the United States. Ferguson reminded us that the essential feature of families of students with disabilities is not the add-on "with students with disabilities" but the foreground, "families with children." Ferguson went on to persuade us that families with children with and without disabilities share many more features than what may distinguish families with and without children with disabilities. Ferguson remarked that for the most part, narratives about families and their children with disabilities have focused on disability as the fulcrum around which family dynamics are shaped. This research gave way more recently to the use of narrative as way of exploring family development over time, not in reaction to disability but in families' constructions of the meaning of family and its various permutations. Ferguson noted that in this research, family narrative was explored, but little emphasis was given to the cultural contexts that shape families' perspectives and how these cultural contexts interact with social institutions such as schools. Thus, in U.S. research journals, the narratives of White, middle- class families have been told as universal stories rather than as stories situated in particular contexts in which the families themselves hold particular positions of privilege within a majority White and middle-class culture in the United States. Only a few researchers in the disability field have foregrounded culture as they explored families and the assets they bring to the negotiation of services for their children (i.e., Harry, 1992; Harry & Klingner, 2006). Thus, it is critical in a comparative study that the narratives of families that are not part of the dominant culture are examined to understand the impact of institutional practices on families and their capacity to negotiate educational services for their children.
Recently, discourse about families has also begun to explore the privileging of professional over family knowledge and the implications of this pattern of relationship between families and professionals. Kalyanpur and Harry (2004) noted that it is the researchers and practitioners who discuss how learning disabilities will be defined and assessed and the nature of effective interventions. Families, rather than being part of knowledge generation, are knowledge recipients. The result of this pattern of interaction is played out in decision making about individual students, in which families' perspectives are subordinated to the rules and procedures of institutionalized practice (Harry & Klingner, 2006).
In 2004, Nelson et al. discussed the professional rules that govern relationships between families and professionals in special education, with particular focus on early childhood. In their article, they noted that most helping professions define the boundaries of social relationships between professionals and families (or clients) as ones of appropriate distancing in which professionals gain trust and respect between themselves and families without moving into friendship roles in which transactions between families and professionals spill into recreation, shared experiences of everyday life, confidences, and shared chores. They likened friendship relationships to the interactions between two close sisters, who can move fluidly between advisor and advisee, confidant, and adventurer. In contrast, the dimensions of professional-family relationships are focused on specific circumstances and issues in which professionals are most likely to play the role of experts and family members advisees or clients, expecting to receive advice that helps them manage or meet goals. Nelson et al. went on to note that some helping professional organizations, such as the American Counseling Association and the American Psychological Association, have professional ethical standards that describe and codify these relationships and appropriate deportment on the part of professionals. This kind of rule making is what activity theories refer to as the rules of transaction and participation within an activity arena (Wertsch, 1995).
In this study, we examined how implicit rules for professional- family relationships seemed to play out in decisions to place children in particular settings. We looked for similarities and differences in the rules and the ways they were constructed in South Africa and the United States, foregrounding the cultures of the families that we interviewed. As Artiles (1998) noted, how disability is construed and addressed is affected by the cultural and historical contexts of education within each country. The U.S. context includes continued segregation within schools and school systems, vast differences in access to educational resources, and increasing concern with the disproportionate representation of students from culturally and linguistically diverse backgrounds in special education (Harry & Klingner, 2006; Kozol, 2005). The end of apartheid in South Africa, a focus on reinventing public schools, and the continued disparities in access to free, public education form some of the context for South Africa (Redpath, 2003). Further factors include poverty, multilingualism, and the devastating impact of HIV/AIDS on both students and teachers (Rehle, Shisana, Glencross, & Colvin, 2005; Shisana, Peltzer, Zungu-Dirwayi, & Louw, 2005).
In both the United States and South Africa, the national governments have policies that provide a foundation for school practices at the local level. In the United States, the most current authorization of the Individuals With Disabilities Act (Individuals With Disabilities Education Improvement Act, 2004) reminds citizens that for more than 30 years, the U.S. federal government has had a law in effect that requires local public schools to offer free appropriate public education to students with disabilities. The current authorization of this law also acknowledges that although access to public education is widely available, the quality of that education and its availability alongside nondisabled peers remains a barrier in many local schools. The U.S. law describes the conditions under which services to students with disabilities shall be provided. It provides financial support to states to fund special education and it stipulates the process by which teams of educators and related services personnel in collaboration with families identify, place, plan, and assess individualized educational programs. The law goes on to stipulate data collection and fund systems of personnel development as well as the kinds of technical assistance and professional learning efforts designed to inform and improve local responses. In contrast, South Africa's inclusive education policy, approved by the national education department, takes a strong stand on the socially constructed nature of disability but does not specify nor fund a system through which such an agenda could be achieved: "The approach advocated in this White Paper is fundamentally different from traditional ones that assume that barriers to learning reside primarily within the learner and accordingly, learner support should take the form of specialist, typically medical interventions" (South Africa Department of Education, 2001, p. 23). The policy concludes that schools, practitioners, and families must work together to ensure that local schools provide the setting, materials, and expertise to engage learners with disabilities and help them become educated and prepared for productive adult lives.
Thus, the laws that allow students with disabilities to access general education public schooling create very different contexts. On one hand, in the United States, the educational system must identify, assess, and determine eligibility for special education services. Special education law created a categorization system specific to special education law, along with processes and procedures that stipulate timelines that must be followed at the local school level. School districts and states are given oversight responsibility to ensure that these processes are carried out accurately. In South Africa, no such system exists. Disabilities are diagnosed through the medical system and use the medical categorization system.
As Dyson and Kozleski (in press) point out, the United States has a persistent pattern of identifying and placing students of color, particularly African American boys, into special education at rates 2 to 3 times higher than for other racial and ethnic groups. These patterns of overrepresentation are also evident for Latino and American Indian students. Because the institutional practice of special education relies on families' having specific patterns of communication, an understanding of school practices and rules, access to information from a variety of sources, and the cultural and social capital necessary to participate in decision making with professionals, one area that needs further research is in the negotiation between families and school personnel around identification and placement decisions.
In South Africa, access to education and opportunities to learn also play out across race. Engelbrecht (2006) stated that racially entrenched attitudes and institutionalized discriminatory practices led to extreme disparities in the delivery of education in South Africa. Although the end of apartheid and the advent of the new constitution have created national policies of equity, including the mandate for inclusive education, the process of change is slow. Moreover, South Africa's inclusive education policy is a human rights vision rather than a blueprint that mandates specific processes and interactions in every school, as does the U.S. special education policy.
The intersections of race, class, and disability are complicated to understand within a single formal structure. We can examine the ways in which a single system may advantage some individuals or disadvantage others and, in doing so, help improve the intended and unintended consequences of the way things are. By looking at educational systems in two very different contexts, we hoped to develop a richer understanding of how race, socioeconomic status, and disability influenced the relationships between families and school professionals and the ways in which they collaborated in educating children with disabilities. We were particularly interested in these processes in inclusive educational settings in which students with and without disabilities learned together. By listening to families from differing socioeconomic, ethnic, and linguistic communities, we hoped to understand how they experienced inclusive education in their local communities.
Method
The research team was composed of two branches, one in South Africa and the other in the United States. These two teams corresponded with each other in the development of a set of outcomes for this study and a set of parameters for recruiting families to participate in the study. During the course of this 2-year study, researchers from the American and South African teams met three times face to face. The teams in both countries met on a monthly basis while the design was finalized, human subjects permissions were obtained, and data were collected. They continued to meet for the semester in which the data were analyzed. One member of the U.S. team was able to travel to South Africa to participate in data analysis with members of the South African team. Later, another member of the U.S. team traveled to South Africa to continue the data analysis. Members of the team met a third time at the American Educational Research Association's annual conference. By conceptualizing the study together, collecting the data during the same academic semester, and then sharing the process of data analysis, we learned a great deal about each other's context and were able to make adjustments in our approaches to accommodate the complexities of working across two very different systems.
Participants
Families were recruited for this study by the research team in each country. In South Africa, the research team had done research work in a set of schools located in two areas within driving distance from the team's university. The initial sample included representative groups of parents of children with disabilities within inclusive educational schools in the Western Cape and Gauteng provinces in South Africa. The South African team selected participants who were parents or caregivers of children with disabilities who were included in inclusive schools at the time of the focus group. Contextual differences were apparent as we worked together to identify a sample in each location. For instance, school teams in the United States identify children with disabilities to access special education services. School psychologists in a set of urban schools selected because they served diverse populations of students contacted families, who then gave their consent to be interviewed by the U.S. research team. Thus, the researchers were able to access students and through the students, families, whereas this avenue was not available in South Africa.
Only a few provinces in South Africa have databases that identify schools and the portions of the student bodies that may have disabilities, because the education system has not installed a special education system that relies on eligibility, labeling, and placement decisions to determine who will receive specialized supports and services in schools. As a result, the South African researchers relied on a form of snowball sampling by calling schools and nongovernmental organizations in the disability sector to identify children with disabilities who were being included. From this list, the researchers contacted parents and were able to recruit 47 participants for the study. Researchers balanced their participants by race. About half were White and the other half Black. They did select participants who were able to converse in either English (n = 15) or Afrikaans (n = 32), because the researchers were fluent in both languages. The children attended local schools ranging in size from 300 to at least 1,000 students. Children had experienced their current settings for at least 1 year. Fortyseven parents (7 fathers and 39 mothers) participated, along with 1 person who, although not a parent, was a primary caregiver. In the United States, the families we interviewed were predominantly low income, minority, and for the most part, lacked college educations.
The children of the participants ranged in age from 8 to 16 years. Twelve were male and 20 female. Although the students in the South African sample displayed challenges relating to learning, intellectual, and emotional disabilities, they were identified for the most part with medical rather than educational labels: Down's syndrome (n = 6), spina bifida (n = 3), trisomy 14 (n = 1), acquired brain injury (n = 1), Tourette's syndrome (n = 1), muscular dystrophy (n = 1), growth impairment (n = 1), and specific learning problems (n = 2). These labels specify medical rather than educational status and offer little information about the educational and intellectual skills and capacities of the students, because there is wide variability among individuals with these diagnoses.
The U.S. sample was recruited from eight schools that had more than 65% of their populations receiving free or reduced-priced lunch. These schools were all within one school system that supported over 120 schools and about 65,000 students. The school psychologists at these schools recruited families in each of the schools. They were asked to identify families from diverse ethnic backgrounds who had children with disabilities receiving special education services. They sent home invitations and followed up with phone calls to families to secure permission. The day of the scheduled focus groups, the school psychologists followed up again with reminder phone calls. As a result, there were 15 Hispanic parents, 10 African American parents, and 2 White parents. Eight of the Hispanic parents participated in focus groups conducted in Spanish. The U.S. team wanted to collect data from families that were dominant Spanish speakers as well as from dominant English speakers, because this was reflective of the school communities in which we were collecting data. The children of the parents interviewed ranged in age from 4 to 16 years of age. Nine students were identified as having learning disabilities, 2 had pervasive developmental disabilities, 2 were identified as having emotional disturbance, 3 had multiple disabilities, 2 were identified as having mental retardation, 1 had visual impairment, 4 had developmental disabilities, 1 had hearing impairment, and 3 with speech or language impairments. In the United States, the disability labels that identified students had been provided by the schools through a process of assessment that was stipulated in special education. In South Africa, no such process exists. Students are identified as having disabilities through the medical system. Families provide those diagnoses to the schools when their children register for school. Thus, the study was composed of families whose children were identified through two different processes. On one hand, in the United States, students are identified with educational disability labels by educational personnel. On the other, in South Africa, children are identified through a medical diagnostic process.
In 2002, our research team published its first paper on our collective research efforts, exploring the complexities of completing cross-cultural work. Eloff et al. (2002) discussed how basic activities, such as deciding which families would be invited to participate in our research, uncovered a variety of cultural differences that were unexpected. For instance, assumptions about the nature of special education and its outcomes differed across our two sites. As we began to select families, we realized that schools in the United States often had students with disabilities that remained unidentified in South Africa. The U.S. research team thought that interviewing families of students with learning, intellectual, and emotional disabilities was critical, because those disabilities are subject to social construction. The U.S researchers thought that negotiating the identification of students with these disabilities would lead to deeper understanding of how race, class, and culture complicate the special education identification process. As a result, the U.S. sample included parents whose children had special education labels of learning, intellectual, or emotional disabilities. Although there were similarities in the students' abilities to function intellectually, the identifiers came from the educational system in the United States and the medical system in South Africa.
The Interview Process
The researchers' approaches to interviewing differed in South Africa and the United States. In South Africa, three researchers conducted six focus groups, each lasting about an hour and a half. The researchers were all White, Afrikaner university faculty members. A single item guided the interviews with families: "Tell us about your experiences as parents of your child's inclusion in a mainstream classroom and school." The researchers used the item to facilitate a discussion and then used probes to keep the discourse focused on the item. Follow-up probes included encouraging parents to tell their own stories. At times, the researchers also asked specific questions about the placement process, the kinds of things that had happened since the placement, the adaptations and accommodations that the school had made for the children, and the reactions of the children's peers and siblings.
After piloting an initial set of questions with four families, the final U.S. interview guide contained seven questions, which were translated into Spanish for the Spanish-speaking families. The U.S. team used two doctoral-level students, both fluent in Spanish, to conduct the focus groups, after providing training and an initial model for them. The questions were broad and open ended so that families were able to explore the topics introduced by the questions in some detail (see Table 1). A total of 13 focus groups were conducted, ranging in size from one to eight participants.
We e-mailed back and forth many times as we tried to construct a single guide for both settings, but there remained concerns about overly structuring the interviews for the families in South Africa and not enough structure in the United States. To some extent, this reflected the differences in the methodological backgrounds of the researchers on each continent. We resolved the differences in our interview guides using a similar first question.
Data Analysis
On both teams, the researchers transcribed audiotapes of their focus groups. Afrikaans tapes were transcribed first into Afrikaans, and these transcriptions were then translated into English. The same process was completed for the Spanish-language tapes in the United States. In both cases, a second researcher listened to the tapes in the first language while reading the transcript in English to check the translations.
Both teams of researchers used a constant-comparison method (Glaser & Strauss, 1994) to identify initial categories from their data. After reading transcripts independently and nominating categories, the researchers began to code data into categories that emerged during an initial analysis. Subsequent analyses were run to refine and sort data more precisely, with researchers working in tandem to clarify and challenge the codes. A third pass at the data allowed the researchers to look for relationships among the data. Whereas the U.S. researchers began without a specific scheme in mind, the South African team focused on initial categories of placement, process, and concerns; the impact of inclusion on parents and siblings; the role of the school, including the manner in which the child was accommodated and supported in the school; and the reactions of the wider school community (Swart, Engelbrecht, Eloff, Pettipher, & Oswald, 2005). The final data reduction process involved clustering categories into the overall theme of individual rights (Blue-Banning, Summers, Frankland, & Beegle, 2004).
Results
We examine these findings using a cultural-historical activity theory lens because comparisons between the lived experiences of families in both countries are so deeply affected by the systems they navigate to seek the best outcomes for their children. In particular, we focus on the rules that explicitly or implicitly define family and school personnel relationships as well as the way that divisions of labor between families and professionals are constructed and maintained.
Themes that came from each team's analysis were different. Whereas the South African parents seemed to focus on how they decided to place their students in inclusive schools and classrooms and the impact of these placements on their children with disabilities as well as their siblings, the U.S. parents seemed to focus on the aftermath of placement or the negotiation required to keep their children in learning environments that produced success as defined by the parents (Engelbrecht et al., 2005; Hess et al., 2006; Swart et al., 2005). In many ways, these differences are a reflection of the contexts in which special education exists in both countries. On one hand, South Africa has the national human rights agenda to support inclusive education, without a specific policy specifying the process by which this will occur. On the other, the United States has a national law that is highly prescriptive and details the ways in which children are identified and placed in special education by the education system, subsequent processes for goal setting and progress monitoring, and a series of protections for families and students to ensure that their individual rights are observed through all the processes.
Rules
As we reviewed our themes, one area that seemed to be important in both contexts was the rules that governed family behaviors in both South Africa and the United States. In fact, the differences were so profound that the research teams themselves did not understand the very different assumptions they were making about the process of entering special education. In the United States, most of the families we spoke with encountered special education as a service and process that schools initiated. In some cases, although families knew that their children had challenges, they also expected to enroll their children in their neighborhood schools. On the other hand, South African families had no special education service delivery system to back up their interests in having their children educated in general education environments. They had a human rights policy they chose to exercise. The parents had to decide to place their children in general education schools and then had to negotiate to gain admission to general education schools for their students, explaining their students' disabilities and their needs for accommodations. South African parents acknowledged that they had actively chosen where their children would be educated:
Parents must know if they choose this path, it is not an easy path. You as a parent also have to do what you can, no matter what the teachers say. (Focus Group 1, Pretoria)
In contrast, a dominant-Spanish-speaking parent in the United States described her experience with her child's school:
The school sent me somewhere to have some assessments done with my son, but I don't know what kind of assessments or what they were for. I took him, but I didn't know why, and I never heard anything about the results, [translated from Spanish]
Although the school took responsibility for understanding the student's learning challenges, school personnel failed to make the rules and processes transparent. In worst-case scenarios, this view of families as recipients also subordinates their role and legitimizes poor or nonexistent communication. In subordinating the role of families to the work of researchers and practitioners, families' judgments, observations, and perspectives are also subordinated to professional knowledge building and judgment, as this parent described: My first experience with an IEP [Individualized Education Program], I felt like I was in a different world. I just sat there crying because it felt like, they made me feel like my son was like, so low on his scores and then it's like I had nobody there with me, and I am just looking around at everybody and I'm "He what?" They just kind of rushed through it, and all, basically all I got out of it was that it was, "My son's not up to his potential." He's not doing this and he needs this service, and that's it, sign the papers. And I just walked out of there. I mean, I was just flabbergasted.
Families, particularly those in minority cultures in any given context, are disadvantaged by these perspectives in at least two ways. Not only do professionals have a preference for their own perspectives, but families are co-opted into assuming that professional judgment is better, more accurate, because the process for making judgments about the needs of children is predicated on individualistic determinations of disability that may not coincide with the families' perspectives on the collective nature of the family (Kalyanpur & Harry, 2004).
The systems that families in South Africa and the United States navigate produce very different responses. On one hand, the U.S. families seemed disempowered by their experiences, whereas the South African families seemed to be focused on advocacy:
And that's actually where we need to start, is at the . . . in our environment, our neighbours, our community, our church. . . . And why shouldn't they be included? They've got a right, just as . . . just like . . . yes. But it's the past. We sit with the burden of the past that people put their kid in an institution and nowadays we don't do that anymore.
In South Africa, parents seemed to take on responsibility for placing their children. In the United States, families seemed to be surprised by finding out through their schools that their children had learning problems in school and then felt as if they were coerced in some way to accept the assessments of the professionals and follow their advice. As we looked at the experiences of families in South Africa and the United States, we wondered about the tools that were used to guide interactions between the families and the professionals. To what extent were the processes of identification and placement more formalized in the United States, and to what extent did the process itself proceed along a predetermined pathway through no particular engineering by the participants? To what extent did the families differ in terms of education and status within their local communities?
Division of Labor
This kind of rule making and breaking occurred in our own focus groups in both South Africa and the United States. Swart et al. (2005) reported that "one of the strongest themes that emerged during the course of this investigation was the importance of parents actively working together on the development of a mutual, supportive, open relationship with the school and the teachers" (p. 15). They went on to mention that "teachers who were prepared to learn and change their practices in order to better accommodate the child were, amongst other things, prepared to accept the advice and help of parents and other professional people" (p. 15). In the United States, families identified communication as a big factor in the degree to which they felt comfortable and satisfied with their children's classroom experiences:
You know, he can't tell me, so I want to know what's going on. So, I think communication, I think the biggest part of a perfect school would be a communication part. Being able to call that teacher after school and say, "Hey, what kind of a day did my son have? What did you guys do today?" (Hess et al., 2006, p. 8)
In terms of rule making, as Nelson et al. (2004) suggested, relationships between families and school professionals need to go beyond commonplace assumptions that families receive information and teachers construct it. The most positive experiences for families and their children seem to be with teachers and other practitioners who go beyond their expected division of labor to create strong connections with families in support of student learning.
South African parents reported tensions in letting their children go into general education settings with peers who were nondisabled. The lack of shelter for their children in these settings troubled them, yet they believed that their children needed the opportunity to develop their own identities in settings in which disability was not the norm. The U.S. research team found that the U.S. parents reported little or no conflict about the decisions to place their children in inclusive classrooms. Rather, the U.S. parents seemed to learn within the 1st year of their children being labeled for special education that they could, at a minimum, provide specific information that would help teachers better serve their children. This process of becoming advocates for their children was characteristic for all of the U.S. families, whether they were White, African American, or Hispanic. In fact, over time, the mothers in particular became leaders in constructing and modifying their students' programs, because they perceived that professionals might not know or be able to advocate for their children's specific needs. For Spanish speakers, this process seemed to take 2 to 3 years:
It was really difficult for me to sit through IEP meetings and different people would start talking speech gibberish, different people would say things, and I would sit there and I would really try to focus on what's going on. But I would take that paper home, and I'd look at it and I'd be thinking, "What in the world just transpired?" It took me pretty, several years, before I realized I am his advocate. I have to speak up and say, "Okay, wait a minute, slow down, what does that mean, what did you say?"
Conclusion
Although South Africa and the United States differ dramatically in their gross national products, many strains experienced in both settings result from inefficiencies in system capacities, such as information management, personnel preparation, and resource distribution. Interpretations made in this cross-case analysis have some limitations, including the differences that may exist within the sample population from the two countries. However, this study helped us understand some of the shared challenges in how families are able to access educational systems in both countries.
In this cross-case analysis, we noticed that families in the U.S. study tended to struggle more with the process of special education identification than their South African counterparts. This difference was due in part to the nature of the students' disabilities, the education and economic status of the families, and the degree to which families felt empowered to lead the decision- making process. The roles that families and professionals were expected to play also seemed to dictate levels of participation. Although Spanish-speaking parents' language needs were accommodated, these accommodations were made in response to family requests rather than schools' assuming in advance that they might have to make language accommodations for any family.
Without explicit information about the special education system and its assumptions about the voices and contributions of families, the U.S. families seemed to err on the side of caution, spending time listening so that they could process information later, after meetings had occurred. We also noticed that families seemed to respond more fully to educational planning when they felt welcomed and accepted by teachers and administrators. Rules about professional-family boundaries in relationships seemed to be drawn more explicitly by professionals than by families.
Activity theory provides a scaffold for exploring the human interactions that occur within special education. It allows us to examine multiple vantage points and begin to communicate the layered complexity of family-school relationships, mediated as they are by predetermined formal processes imposed on interactions among groups of people with differing stakes in the outcomes of the interaction. By examining how the tools of practice in special education mediate outcomes, we may be better able to offer services and supports for students that capitalize on their assets and capacities. Cross- cultural studies such as this one help researchers, practitioners, and families better understand their own practices and the results of those practices by looking at the differences between systems and experiences.
Table 1
Focus Group Items
1. Tell us about your children's school experiences-their classes and their classmates.
2. Tell us about how you first learned that your child might need special help.
3. Tell us about what's happening now with your child. Is he or she continuing to get special help and how is it working out?
4. How does your child fit in with his classmates?
5. To what extent has school been good for your child?
6. There's an idea that some people have that all kids should learn together in the same class, even if they have a disability. That's so that all kids grow up with the same choices and opportunities, even when they are different. The thought is that all teachers need to know how to work with all kids. This is often called inclusive education. In what ways has your child had an inclusive school experience?
7. What would the perfect school be like for your child?
References
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Dyson, A., & Kozleski, E. B. (in press). Disproportionality in special education: A transatlantic phenomenon. In L. Florian & M. McLaughlin (Eds.), Dilemmas and alternatives in the classification of children with disabilities: New perspectives.
Eloff, I., Engelbrecht, P., Kozleski, E., Oswald, M., Swart, E., & Yssel, N. (2002, December). Epistemological and methodological issues in a transatlantic project on inclusive education. Paper presented at the annual meeting of the Australian Association for Research in Education, Brisbane, Australia.
Engelbrecht, P. (2006). The implementation of inclusive education in South Africa after ten years of democracy. European Journal of Psychology in Education, 21, 253-264.
Engelbrecht, P., Oswald, M., Swart, E., Kitching, A., & Eloff, I. (2005). Parents' experiences of their rights in the implementation of inclusive education in South Africa. School Psychology International, 26, 459-477.
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Harry, B. (1992). Restructuring the participation of AfricanAmerican parents in special education. Exceptional Children, 59, 123-132.
Harry, B., & Klingner, J. K. (2006). Why are so many minority students in special education? Understanding race and disability in schools. New York: Teachers College Press.
Hess, R., Molina, A., & Kozleski, E. B. (2006). Until somebody hears me: Parental voice and advocacy in special education decision- making. British Journal of Special Education, 33, 148-157.
Individuals With Disabilities Education Improvement Act, 20 U.S.C. [section] 1400 et seq. (2004).
Kalyanpur, M., & Harry, B. (2004). Impact of the social construction of LD on culturally diverse families: A response to Reid and Valle. Journal of Learning Disabilities, 37, 530-533.
Kozol, J. (2005). The shame of a nation: The restoration of apartheid schooling in America. New York: Crown.
Nelson, L., Summers, A., & Turnbull, A. P. (2004). Boundaries in family-professional relationships. Remedial and Special Education, 25, 153-165.
Redpath, J. (2003, September). Independent schooling in South Africa. Cinderella or fairy godmother? Paper presented at the Liberal Education-International Perspectives Conference, Potsdam, Germany.
Rehle, T, Shisana, O., Glencross, D., & Colvin, M. (2005). HIV- positive educators in South African public schools: Predictions for prophylaxis and antiretroviral therapy. Cape Town, South Africa: Human Sciences Research Council.
Rogoff, B. (2003). The cultural nature of human development. New York: Oxford University Press.
Shisana, O., Peltzer, K., Zungu-Dirwayi, N., & Louw, J. (2005). The health of our educators: A focus on HIV/AIDS in South African public schools. Cape Town, South Africa: Human Sciences Research Council.
South Africa Department of Education. (2001). White Paper 6: Building an inclusive education and training system. Retrieved July 26, 2006, from http://www.info.gov.za/whitepapers/2001/ educ6.pdf
Swart, E., Engelbrecht, P., Eloff, I., Pettipher, R., & Oswald, M. (2005). Developing inclusive school communities: Voices of parents of children with disabilities. Education as Change, 8, 80- 108.
Wertsch, J. V. (1995). The need for action in sociocultural research. In J. V. Wertsch, P. del Rio, & A. Alvarez, A. (Ed.), Sociocultural studies of mind (pp. 56-74). Cambridge, UK: Cambridge University Press.
Elizabeth B. Kozleski
Arizona State University
Petra Engelbrecht
North-West University (Potchefstroom Campus)
Robyn Hess
University of Northern Colorado
Estelle Swart
University of Stellenbosch
Irma Eloff
University of Pretoria
Marietjie Oswald
University of Stellenbosch
Amy Molina
University of Northern Colorado
Swati Jain
Swati Jain College
Authors' Note: We acknowledge the support of the National Institute for Urban School Improvement (http://www.urbanschools .org) under Grant H326B060012 and the National Center for Culturally Responsive Educational Systems (http://www.nccrest .org) under Grant H326E020003 awarded by the U.S. Department of Education's Office of Special Education Programs. Funding agency endorsement of the ideas presented in this article should not be inferred. Correspondence concerning this article should be addressed to Elizabeth B. Kozleski, Arizona State University, Mary Lou Fulton College of Education, Curriculum and Instruction, P.O. Box 87201, Tempe, AZ 85287-2011; e-mail: elizabeth .kozleski@asu.edu.
Elizabeth B. Kozleski, EdD, is a professor of special education at Arizona State University in Tempe. Her current interests include urban education, inclusive education, systems change, and teacher learning.
Petra Engelbrecht, PhD, is dean of the Faculty of Education at North-West University (Potchefstroom Campus) in South Africa. Her current interests include inclusive education and research capacity development.
Robyn Hess is an associate professor of school psychology at the University of Northern Colorado, focusing on school dropout and completion, especially among Latino students; culturally responsive assessment and intervention; systemic interventions; and stress and coping in children.
Estelle Swart, EdD, is a professor in educational psychology at the University of Stellenbosch. Her research focuses on leadership development for inclusive education and professional learning of teachers and psychologists.
Irma Eloff, PhD, is chair of the Department of Educational Psychology at the University of Pretoria, South Africa. Her research focuses on positive psychology, vulnerable children, and inclusion.
Marietjie Oswald, MEd, is a lecturer in educational psychology at the University of Stellenbosch, focusing on inclusive education, career education, and counseling and life skills education. She is currently working on her PhD, exploring the implementation of inclusive education in schools.
Amy Molina, MS, is a PhD candidate in school psychology. Her research interests include positive psychology, alternative school programming, and educational attainment among diverse populations.
Swati Jain, MS, owns and operates the Swati Jain College in Indore, India. Her research interests involve leadership for crosscultural innovation and sustainability, systems change, and student assessment studies.
Copyright PRO-ED Journals May 2008
(c) 2008 Journal of Special Education, The. Provided by ProQuest Information and Learning. All rights Reserved.
Source: Journal of Special Education, The
Posted on: Saturday, 14 June 2008, 03:00 CDT
By Kozleski, Elizabeth B Engelbrecht, Petra; Hess, Robyn; Swart, Estelle; Eloff, Irma; Oswald, Marietjie; Molina, Amy; Jain, Swati
U.S. education policy acknowledges the troubling differential rates of special education identification and placement for students who are culturally and linguistically diverse by requiring states to review annually student identification data from all local education agencies to identify and address disproportionate representation. Yet, little is known about the interaction between families that are culturally and linguistically diverse and the service providers they encounter at their local schools. The authors examine those relationships in South Africa and the United States, two countries where the legacy of racism lingers in the ways in which school personnel and families negotiate differences in how children are viewed, assessed, and offered support for learning needs. In both countries, sustained efforts from families and school personnel were needed to develop supports and services that worked well for students with disabilities and their families. Keywords: disabilities; special education; families; comparative studies; children; parents
This article provides a cross-case analysis of a research study conceptualized and implemented simultaneously in South Africa and the United States (Engelbrecht, Oswald, Swart, Kitching, & Eloff, 2005; Hess, Molina, & Kozleski, 2006). We began our work together with a shared interest in understanding how context and culture influence and shape the ways in which families access and experience educational systems when their children have disabilities. Using a cultural-historical activity theory lens (Rogoff, 2003), in this article we provide a comparative analysis of our research findings.
Cultural-historical activity theory has a robust history stemming from the work of Vygotsky and other Russian researchers, who sought to examine how context and adults played a role in mediating the development of metacognitive skills, particularly in young children. A variety of researchers began to explore the role of social and cultural mediation itself and to analyze potential mediators in the environment. As Michael Cole and others elaborated these ideas, the interplay between internal psychological characteristics and external mediators was extended to include functional systems of artifacts and participant structures (Cole, 1996; Rogoff, 2003; Wertsch, 1995). Activity theory provides a framework for researchers to understand how families, students, and professionals construct their local practices, interpret rules, and organize their work in the context of complex sociocultural characteristics that are themselves dynamic.
The work of researchers such as Ferguson (2002), Kalyanpur and Harry (2004), Harry and Klingner (2006), and Nelson, Summers, and Turnbull (2004) provides detailed understanding of how family and professional interactions have played out in settings within the United States. Ferguson reminded us that the essential feature of families of students with disabilities is not the add-on "with students with disabilities" but the foreground, "families with children." Ferguson went on to persuade us that families with children with and without disabilities share many more features than what may distinguish families with and without children with disabilities. Ferguson remarked that for the most part, narratives about families and their children with disabilities have focused on disability as the fulcrum around which family dynamics are shaped. This research gave way more recently to the use of narrative as way of exploring family development over time, not in reaction to disability but in families' constructions of the meaning of family and its various permutations. Ferguson noted that in this research, family narrative was explored, but little emphasis was given to the cultural contexts that shape families' perspectives and how these cultural contexts interact with social institutions such as schools. Thus, in U.S. research journals, the narratives of White, middle- class families have been told as universal stories rather than as stories situated in particular contexts in which the families themselves hold particular positions of privilege within a majority White and middle-class culture in the United States. Only a few researchers in the disability field have foregrounded culture as they explored families and the assets they bring to the negotiation of services for their children (i.e., Harry, 1992; Harry & Klingner, 2006). Thus, it is critical in a comparative study that the narratives of families that are not part of the dominant culture are examined to understand the impact of institutional practices on families and their capacity to negotiate educational services for their children.
Recently, discourse about families has also begun to explore the privileging of professional over family knowledge and the implications of this pattern of relationship between families and professionals. Kalyanpur and Harry (2004) noted that it is the researchers and practitioners who discuss how learning disabilities will be defined and assessed and the nature of effective interventions. Families, rather than being part of knowledge generation, are knowledge recipients. The result of this pattern of interaction is played out in decision making about individual students, in which families' perspectives are subordinated to the rules and procedures of institutionalized practice (Harry & Klingner, 2006).
In 2004, Nelson et al. discussed the professional rules that govern relationships between families and professionals in special education, with particular focus on early childhood. In their article, they noted that most helping professions define the boundaries of social relationships between professionals and families (or clients) as ones of appropriate distancing in which professionals gain trust and respect between themselves and families without moving into friendship roles in which transactions between families and professionals spill into recreation, shared experiences of everyday life, confidences, and shared chores. They likened friendship relationships to the interactions between two close sisters, who can move fluidly between advisor and advisee, confidant, and adventurer. In contrast, the dimensions of professional-family relationships are focused on specific circumstances and issues in which professionals are most likely to play the role of experts and family members advisees or clients, expecting to receive advice that helps them manage or meet goals. Nelson et al. went on to note that some helping professional organizations, such as the American Counseling Association and the American Psychological Association, have professional ethical standards that describe and codify these relationships and appropriate deportment on the part of professionals. This kind of rule making is what activity theories refer to as the rules of transaction and participation within an activity arena (Wertsch, 1995).
In this study, we examined how implicit rules for professional- family relationships seemed to play out in decisions to place children in particular settings. We looked for similarities and differences in the rules and the ways they were constructed in South Africa and the United States, foregrounding the cultures of the families that we interviewed. As Artiles (1998) noted, how disability is construed and addressed is affected by the cultural and historical contexts of education within each country. The U.S. context includes continued segregation within schools and school systems, vast differences in access to educational resources, and increasing concern with the disproportionate representation of students from culturally and linguistically diverse backgrounds in special education (Harry & Klingner, 2006; Kozol, 2005). The end of apartheid in South Africa, a focus on reinventing public schools, and the continued disparities in access to free, public education form some of the context for South Africa (Redpath, 2003). Further factors include poverty, multilingualism, and the devastating impact of HIV/AIDS on both students and teachers (Rehle, Shisana, Glencross, & Colvin, 2005; Shisana, Peltzer, Zungu-Dirwayi, & Louw, 2005).
In both the United States and South Africa, the national governments have policies that provide a foundation for school practices at the local level. In the United States, the most current authorization of the Individuals With Disabilities Act (Individuals With Disabilities Education Improvement Act, 2004) reminds citizens that for more than 30 years, the U.S. federal government has had a law in effect that requires local public schools to offer free appropriate public education to students with disabilities. The current authorization of this law also acknowledges that although access to public education is widely available, the quality of that education and its availability alongside nondisabled peers remains a barrier in many local schools. The U.S. law describes the conditions under which services to students with disabilities shall be provided. It provides financial support to states to fund special education and it stipulates the process by which teams of educators and related services personnel in collaboration with families identify, place, plan, and assess individualized educational programs. The law goes on to stipulate data collection and fund systems of personnel development as well as the kinds of technical assistance and professional learning efforts designed to inform and improve local responses. In contrast, South Africa's inclusive education policy, approved by the national education department, takes a strong stand on the socially constructed nature of disability but does not specify nor fund a system through which such an agenda could be achieved: "The approach advocated in this White Paper is fundamentally different from traditional ones that assume that barriers to learning reside primarily within the learner and accordingly, learner support should take the form of specialist, typically medical interventions" (South Africa Department of Education, 2001, p. 23). The policy concludes that schools, practitioners, and families must work together to ensure that local schools provide the setting, materials, and expertise to engage learners with disabilities and help them become educated and prepared for productive adult lives.
Thus, the laws that allow students with disabilities to access general education public schooling create very different contexts. On one hand, in the United States, the educational system must identify, assess, and determine eligibility for special education services. Special education law created a categorization system specific to special education law, along with processes and procedures that stipulate timelines that must be followed at the local school level. School districts and states are given oversight responsibility to ensure that these processes are carried out accurately. In South Africa, no such system exists. Disabilities are diagnosed through the medical system and use the medical categorization system.
As Dyson and Kozleski (in press) point out, the United States has a persistent pattern of identifying and placing students of color, particularly African American boys, into special education at rates 2 to 3 times higher than for other racial and ethnic groups. These patterns of overrepresentation are also evident for Latino and American Indian students. Because the institutional practice of special education relies on families' having specific patterns of communication, an understanding of school practices and rules, access to information from a variety of sources, and the cultural and social capital necessary to participate in decision making with professionals, one area that needs further research is in the negotiation between families and school personnel around identification and placement decisions.
In South Africa, access to education and opportunities to learn also play out across race. Engelbrecht (2006) stated that racially entrenched attitudes and institutionalized discriminatory practices led to extreme disparities in the delivery of education in South Africa. Although the end of apartheid and the advent of the new constitution have created national policies of equity, including the mandate for inclusive education, the process of change is slow. Moreover, South Africa's inclusive education policy is a human rights vision rather than a blueprint that mandates specific processes and interactions in every school, as does the U.S. special education policy.
The intersections of race, class, and disability are complicated to understand within a single formal structure. We can examine the ways in which a single system may advantage some individuals or disadvantage others and, in doing so, help improve the intended and unintended consequences of the way things are. By looking at educational systems in two very different contexts, we hoped to develop a richer understanding of how race, socioeconomic status, and disability influenced the relationships between families and school professionals and the ways in which they collaborated in educating children with disabilities. We were particularly interested in these processes in inclusive educational settings in which students with and without disabilities learned together. By listening to families from differing socioeconomic, ethnic, and linguistic communities, we hoped to understand how they experienced inclusive education in their local communities.
Method
The research team was composed of two branches, one in South Africa and the other in the United States. These two teams corresponded with each other in the development of a set of outcomes for this study and a set of parameters for recruiting families to participate in the study. During the course of this 2-year study, researchers from the American and South African teams met three times face to face. The teams in both countries met on a monthly basis while the design was finalized, human subjects permissions were obtained, and data were collected. They continued to meet for the semester in which the data were analyzed. One member of the U.S. team was able to travel to South Africa to participate in data analysis with members of the South African team. Later, another member of the U.S. team traveled to South Africa to continue the data analysis. Members of the team met a third time at the American Educational Research Association's annual conference. By conceptualizing the study together, collecting the data during the same academic semester, and then sharing the process of data analysis, we learned a great deal about each other's context and were able to make adjustments in our approaches to accommodate the complexities of working across two very different systems.
Participants
Families were recruited for this study by the research team in each country. In South Africa, the research team had done research work in a set of schools located in two areas within driving distance from the team's university. The initial sample included representative groups of parents of children with disabilities within inclusive educational schools in the Western Cape and Gauteng provinces in South Africa. The South African team selected participants who were parents or caregivers of children with disabilities who were included in inclusive schools at the time of the focus group. Contextual differences were apparent as we worked together to identify a sample in each location. For instance, school teams in the United States identify children with disabilities to access special education services. School psychologists in a set of urban schools selected because they served diverse populations of students contacted families, who then gave their consent to be interviewed by the U.S. research team. Thus, the researchers were able to access students and through the students, families, whereas this avenue was not available in South Africa.
Only a few provinces in South Africa have databases that identify schools and the portions of the student bodies that may have disabilities, because the education system has not installed a special education system that relies on eligibility, labeling, and placement decisions to determine who will receive specialized supports and services in schools. As a result, the South African researchers relied on a form of snowball sampling by calling schools and nongovernmental organizations in the disability sector to identify children with disabilities who were being included. From this list, the researchers contacted parents and were able to recruit 47 participants for the study. Researchers balanced their participants by race. About half were White and the other half Black. They did select participants who were able to converse in either English (n = 15) or Afrikaans (n = 32), because the researchers were fluent in both languages. The children attended local schools ranging in size from 300 to at least 1,000 students. Children had experienced their current settings for at least 1 year. Fortyseven parents (7 fathers and 39 mothers) participated, along with 1 person who, although not a parent, was a primary caregiver. In the United States, the families we interviewed were predominantly low income, minority, and for the most part, lacked college educations.
The children of the participants ranged in age from 8 to 16 years. Twelve were male and 20 female. Although the students in the South African sample displayed challenges relating to learning, intellectual, and emotional disabilities, they were identified for the most part with medical rather than educational labels: Down's syndrome (n = 6), spina bifida (n = 3), trisomy 14 (n = 1), acquired brain injury (n = 1), Tourette's syndrome (n = 1), muscular dystrophy (n = 1), growth impairment (n = 1), and specific learning problems (n = 2). These labels specify medical rather than educational status and offer little information about the educational and intellectual skills and capacities of the students, because there is wide variability among individuals with these diagnoses.
The U.S. sample was recruited from eight schools that had more than 65% of their populations receiving free or reduced-priced lunch. These schools were all within one school system that supported over 120 schools and about 65,000 students. The school psychologists at these schools recruited families in each of the schools. They were asked to identify families from diverse ethnic backgrounds who had children with disabilities receiving special education services. They sent home invitations and followed up with phone calls to families to secure permission. The day of the scheduled focus groups, the school psychologists followed up again with reminder phone calls. As a result, there were 15 Hispanic parents, 10 African American parents, and 2 White parents. Eight of the Hispanic parents participated in focus groups conducted in Spanish. The U.S. team wanted to collect data from families that were dominant Spanish speakers as well as from dominant English speakers, because this was reflective of the school communities in which we were collecting data. The children of the parents interviewed ranged in age from 4 to 16 years of age. Nine students were identified as having learning disabilities, 2 had pervasive developmental disabilities, 2 were identified as having emotional disturbance, 3 had multiple disabilities, 2 were identified as having mental retardation, 1 had visual impairment, 4 had developmental disabilities, 1 had hearing impairment, and 3 with speech or language impairments. In the United States, the disability labels that identified students had been provided by the schools through a process of assessment that was stipulated in special education. In South Africa, no such process exists. Students are identified as having disabilities through the medical system. Families provide those diagnoses to the schools when their children register for school. Thus, the study was composed of families whose children were identified through two different processes. On one hand, in the United States, students are identified with educational disability labels by educational personnel. On the other, in South Africa, children are identified through a medical diagnostic process.
In 2002, our research team published its first paper on our collective research efforts, exploring the complexities of completing cross-cultural work. Eloff et al. (2002) discussed how basic activities, such as deciding which families would be invited to participate in our research, uncovered a variety of cultural differences that were unexpected. For instance, assumptions about the nature of special education and its outcomes differed across our two sites. As we began to select families, we realized that schools in the United States often had students with disabilities that remained unidentified in South Africa. The U.S. research team thought that interviewing families of students with learning, intellectual, and emotional disabilities was critical, because those disabilities are subject to social construction. The U.S researchers thought that negotiating the identification of students with these disabilities would lead to deeper understanding of how race, class, and culture complicate the special education identification process. As a result, the U.S. sample included parents whose children had special education labels of learning, intellectual, or emotional disabilities. Although there were similarities in the students' abilities to function intellectually, the identifiers came from the educational system in the United States and the medical system in South Africa.
The Interview Process
The researchers' approaches to interviewing differed in South Africa and the United States. In South Africa, three researchers conducted six focus groups, each lasting about an hour and a half. The researchers were all White, Afrikaner university faculty members. A single item guided the interviews with families: "Tell us about your experiences as parents of your child's inclusion in a mainstream classroom and school." The researchers used the item to facilitate a discussion and then used probes to keep the discourse focused on the item. Follow-up probes included encouraging parents to tell their own stories. At times, the researchers also asked specific questions about the placement process, the kinds of things that had happened since the placement, the adaptations and accommodations that the school had made for the children, and the reactions of the children's peers and siblings.
After piloting an initial set of questions with four families, the final U.S. interview guide contained seven questions, which were translated into Spanish for the Spanish-speaking families. The U.S. team used two doctoral-level students, both fluent in Spanish, to conduct the focus groups, after providing training and an initial model for them. The questions were broad and open ended so that families were able to explore the topics introduced by the questions in some detail (see Table 1). A total of 13 focus groups were conducted, ranging in size from one to eight participants.
We e-mailed back and forth many times as we tried to construct a single guide for both settings, but there remained concerns about overly structuring the interviews for the families in South Africa and not enough structure in the United States. To some extent, this reflected the differences in the methodological backgrounds of the researchers on each continent. We resolved the differences in our interview guides using a similar first question.
Data Analysis
On both teams, the researchers transcribed audiotapes of their focus groups. Afrikaans tapes were transcribed first into Afrikaans, and these transcriptions were then translated into English. The same process was completed for the Spanish-language tapes in the United States. In both cases, a second researcher listened to the tapes in the first language while reading the transcript in English to check the translations.
Both teams of researchers used a constant-comparison method (Glaser & Strauss, 1994) to identify initial categories from their data. After reading transcripts independently and nominating categories, the researchers began to code data into categories that emerged during an initial analysis. Subsequent analyses were run to refine and sort data more precisely, with researchers working in tandem to clarify and challenge the codes. A third pass at the data allowed the researchers to look for relationships among the data. Whereas the U.S. researchers began without a specific scheme in mind, the South African team focused on initial categories of placement, process, and concerns; the impact of inclusion on parents and siblings; the role of the school, including the manner in which the child was accommodated and supported in the school; and the reactions of the wider school community (Swart, Engelbrecht, Eloff, Pettipher, & Oswald, 2005). The final data reduction process involved clustering categories into the overall theme of individual rights (Blue-Banning, Summers, Frankland, & Beegle, 2004).
Results
We examine these findings using a cultural-historical activity theory lens because comparisons between the lived experiences of families in both countries are so deeply affected by the systems they navigate to seek the best outcomes for their children. In particular, we focus on the rules that explicitly or implicitly define family and school personnel relationships as well as the way that divisions of labor between families and professionals are constructed and maintained.
Themes that came from each team's analysis were different. Whereas the South African parents seemed to focus on how they decided to place their students in inclusive schools and classrooms and the impact of these placements on their children with disabilities as well as their siblings, the U.S. parents seemed to focus on the aftermath of placement or the negotiation required to keep their children in learning environments that produced success as defined by the parents (Engelbrecht et al., 2005; Hess et al., 2006; Swart et al., 2005). In many ways, these differences are a reflection of the contexts in which special education exists in both countries. On one hand, South Africa has the national human rights agenda to support inclusive education, without a specific policy specifying the process by which this will occur. On the other, the United States has a national law that is highly prescriptive and details the ways in which children are identified and placed in special education by the education system, subsequent processes for goal setting and progress monitoring, and a series of protections for families and students to ensure that their individual rights are observed through all the processes.
Rules
As we reviewed our themes, one area that seemed to be important in both contexts was the rules that governed family behaviors in both South Africa and the United States. In fact, the differences were so profound that the research teams themselves did not understand the very different assumptions they were making about the process of entering special education. In the United States, most of the families we spoke with encountered special education as a service and process that schools initiated. In some cases, although families knew that their children had challenges, they also expected to enroll their children in their neighborhood schools. On the other hand, South African families had no special education service delivery system to back up their interests in having their children educated in general education environments. They had a human rights policy they chose to exercise. The parents had to decide to place their children in general education schools and then had to negotiate to gain admission to general education schools for their students, explaining their students' disabilities and their needs for accommodations. South African parents acknowledged that they had actively chosen where their children would be educated:
Parents must know if they choose this path, it is not an easy path. You as a parent also have to do what you can, no matter what the teachers say. (Focus Group 1, Pretoria)
In contrast, a dominant-Spanish-speaking parent in the United States described her experience with her child's school:
The school sent me somewhere to have some assessments done with my son, but I don't know what kind of assessments or what they were for. I took him, but I didn't know why, and I never heard anything about the results, [translated from Spanish]
Although the school took responsibility for understanding the student's learning challenges, school personnel failed to make the rules and processes transparent. In worst-case scenarios, this view of families as recipients also subordinates their role and legitimizes poor or nonexistent communication. In subordinating the role of families to the work of researchers and practitioners, families' judgments, observations, and perspectives are also subordinated to professional knowledge building and judgment, as this parent described: My first experience with an IEP [Individualized Education Program], I felt like I was in a different world. I just sat there crying because it felt like, they made me feel like my son was like, so low on his scores and then it's like I had nobody there with me, and I am just looking around at everybody and I'm "He what?" They just kind of rushed through it, and all, basically all I got out of it was that it was, "My son's not up to his potential." He's not doing this and he needs this service, and that's it, sign the papers. And I just walked out of there. I mean, I was just flabbergasted.
Families, particularly those in minority cultures in any given context, are disadvantaged by these perspectives in at least two ways. Not only do professionals have a preference for their own perspectives, but families are co-opted into assuming that professional judgment is better, more accurate, because the process for making judgments about the needs of children is predicated on individualistic determinations of disability that may not coincide with the families' perspectives on the collective nature of the family (Kalyanpur & Harry, 2004).
The systems that families in South Africa and the United States navigate produce very different responses. On one hand, the U.S. families seemed disempowered by their experiences, whereas the South African families seemed to be focused on advocacy:
And that's actually where we need to start, is at the . . . in our environment, our neighbours, our community, our church. . . . And why shouldn't they be included? They've got a right, just as . . . just like . . . yes. But it's the past. We sit with the burden of the past that people put their kid in an institution and nowadays we don't do that anymore.
In South Africa, parents seemed to take on responsibility for placing their children. In the United States, families seemed to be surprised by finding out through their schools that their children had learning problems in school and then felt as if they were coerced in some way to accept the assessments of the professionals and follow their advice. As we looked at the experiences of families in South Africa and the United States, we wondered about the tools that were used to guide interactions between the families and the professionals. To what extent were the processes of identification and placement more formalized in the United States, and to what extent did the process itself proceed along a predetermined pathway through no particular engineering by the participants? To what extent did the families differ in terms of education and status within their local communities?
Division of Labor
This kind of rule making and breaking occurred in our own focus groups in both South Africa and the United States. Swart et al. (2005) reported that "one of the strongest themes that emerged during the course of this investigation was the importance of parents actively working together on the development of a mutual, supportive, open relationship with the school and the teachers" (p. 15). They went on to mention that "teachers who were prepared to learn and change their practices in order to better accommodate the child were, amongst other things, prepared to accept the advice and help of parents and other professional people" (p. 15). In the United States, families identified communication as a big factor in the degree to which they felt comfortable and satisfied with their children's classroom experiences:
You know, he can't tell me, so I want to know what's going on. So, I think communication, I think the biggest part of a perfect school would be a communication part. Being able to call that teacher after school and say, "Hey, what kind of a day did my son have? What did you guys do today?" (Hess et al., 2006, p. 8)
In terms of rule making, as Nelson et al. (2004) suggested, relationships between families and school professionals need to go beyond commonplace assumptions that families receive information and teachers construct it. The most positive experiences for families and their children seem to be with teachers and other practitioners who go beyond their expected division of labor to create strong connections with families in support of student learning.
South African parents reported tensions in letting their children go into general education settings with peers who were nondisabled. The lack of shelter for their children in these settings troubled them, yet they believed that their children needed the opportunity to develop their own identities in settings in which disability was not the norm. The U.S. research team found that the U.S. parents reported little or no conflict about the decisions to place their children in inclusive classrooms. Rather, the U.S. parents seemed to learn within the 1st year of their children being labeled for special education that they could, at a minimum, provide specific information that would help teachers better serve their children. This process of becoming advocates for their children was characteristic for all of the U.S. families, whether they were White, African American, or Hispanic. In fact, over time, the mothers in particular became leaders in constructing and modifying their students' programs, because they perceived that professionals might not know or be able to advocate for their children's specific needs. For Spanish speakers, this process seemed to take 2 to 3 years:
It was really difficult for me to sit through IEP meetings and different people would start talking speech gibberish, different people would say things, and I would sit there and I would really try to focus on what's going on. But I would take that paper home, and I'd look at it and I'd be thinking, "What in the world just transpired?" It took me pretty, several years, before I realized I am his advocate. I have to speak up and say, "Okay, wait a minute, slow down, what does that mean, what did you say?"
Conclusion
Although South Africa and the United States differ dramatically in their gross national products, many strains experienced in both settings result from inefficiencies in system capacities, such as information management, personnel preparation, and resource distribution. Interpretations made in this cross-case analysis have some limitations, including the differences that may exist within the sample population from the two countries. However, this study helped us understand some of the shared challenges in how families are able to access educational systems in both countries.
In this cross-case analysis, we noticed that families in the U.S. study tended to struggle more with the process of special education identification than their South African counterparts. This difference was due in part to the nature of the students' disabilities, the education and economic status of the families, and the degree to which families felt empowered to lead the decision- making process. The roles that families and professionals were expected to play also seemed to dictate levels of participation. Although Spanish-speaking parents' language needs were accommodated, these accommodations were made in response to family requests rather than schools' assuming in advance that they might have to make language accommodations for any family.
Without explicit information about the special education system and its assumptions about the voices and contributions of families, the U.S. families seemed to err on the side of caution, spending time listening so that they could process information later, after meetings had occurred. We also noticed that families seemed to respond more fully to educational planning when they felt welcomed and accepted by teachers and administrators. Rules about professional-family boundaries in relationships seemed to be drawn more explicitly by professionals than by families.
Activity theory provides a scaffold for exploring the human interactions that occur within special education. It allows us to examine multiple vantage points and begin to communicate the layered complexity of family-school relationships, mediated as they are by predetermined formal processes imposed on interactions among groups of people with differing stakes in the outcomes of the interaction. By examining how the tools of practice in special education mediate outcomes, we may be better able to offer services and supports for students that capitalize on their assets and capacities. Cross- cultural studies such as this one help researchers, practitioners, and families better understand their own practices and the results of those practices by looking at the differences between systems and experiences.
Table 1
Focus Group Items
1. Tell us about your children's school experiences-their classes and their classmates.
2. Tell us about how you first learned that your child might need special help.
3. Tell us about what's happening now with your child. Is he or she continuing to get special help and how is it working out?
4. How does your child fit in with his classmates?
5. To what extent has school been good for your child?
6. There's an idea that some people have that all kids should learn together in the same class, even if they have a disability. That's so that all kids grow up with the same choices and opportunities, even when they are different. The thought is that all teachers need to know how to work with all kids. This is often called inclusive education. In what ways has your child had an inclusive school experience?
7. What would the perfect school be like for your child?
References
Artiles, A. J. (1998). The dilemma of difference: Enriching the disproportionality discourse with theory and context. Journal of Special Education, 32, 32-36. Blue-Banning, M., Summers, J. A., Frankland, H. E., & Beegle, G. (2004). Dimensions of family and professional partnerships: Constructive guidelines for collaboration. Exceptional Children, 70, 167-184.
Cole, M. (1996). Cultural psychology: A once and future discipline. Cambridge, MA: Belknap.
Dyson, A., & Kozleski, E. B. (in press). Disproportionality in special education: A transatlantic phenomenon. In L. Florian & M. McLaughlin (Eds.), Dilemmas and alternatives in the classification of children with disabilities: New perspectives.
Eloff, I., Engelbrecht, P., Kozleski, E., Oswald, M., Swart, E., & Yssel, N. (2002, December). Epistemological and methodological issues in a transatlantic project on inclusive education. Paper presented at the annual meeting of the Australian Association for Research in Education, Brisbane, Australia.
Engelbrecht, P. (2006). The implementation of inclusive education in South Africa after ten years of democracy. European Journal of Psychology in Education, 21, 253-264.
Engelbrecht, P., Oswald, M., Swart, E., Kitching, A., & Eloff, I. (2005). Parents' experiences of their rights in the implementation of inclusive education in South Africa. School Psychology International, 26, 459-477.
Ferguson, P. M. (2002). A place in the family: An historical interpretation of research on parental reactions to having a child with a disability. Journal of Special Education, 36, 124-131.
Glaser, B. G., & Strauss, A. L. (1967). Discovery of grounded theory. Chicago: Aldine.
Harry, B. (1992). Restructuring the participation of AfricanAmerican parents in special education. Exceptional Children, 59, 123-132.
Harry, B., & Klingner, J. K. (2006). Why are so many minority students in special education? Understanding race and disability in schools. New York: Teachers College Press.
Hess, R., Molina, A., & Kozleski, E. B. (2006). Until somebody hears me: Parental voice and advocacy in special education decision- making. British Journal of Special Education, 33, 148-157.
Individuals With Disabilities Education Improvement Act, 20 U.S.C. [section] 1400 et seq. (2004).
Kalyanpur, M., & Harry, B. (2004). Impact of the social construction of LD on culturally diverse families: A response to Reid and Valle. Journal of Learning Disabilities, 37, 530-533.
Kozol, J. (2005). The shame of a nation: The restoration of apartheid schooling in America. New York: Crown.
Nelson, L., Summers, A., & Turnbull, A. P. (2004). Boundaries in family-professional relationships. Remedial and Special Education, 25, 153-165.
Redpath, J. (2003, September). Independent schooling in South Africa. Cinderella or fairy godmother? Paper presented at the Liberal Education-International Perspectives Conference, Potsdam, Germany.
Rehle, T, Shisana, O., Glencross, D., & Colvin, M. (2005). HIV- positive educators in South African public schools: Predictions for prophylaxis and antiretroviral therapy. Cape Town, South Africa: Human Sciences Research Council.
Rogoff, B. (2003). The cultural nature of human development. New York: Oxford University Press.
Shisana, O., Peltzer, K., Zungu-Dirwayi, N., & Louw, J. (2005). The health of our educators: A focus on HIV/AIDS in South African public schools. Cape Town, South Africa: Human Sciences Research Council.
South Africa Department of Education. (2001). White Paper 6: Building an inclusive education and training system. Retrieved July 26, 2006, from http://www.info.gov.za/whitepapers/2001/ educ6.pdf
Swart, E., Engelbrecht, P., Eloff, I., Pettipher, R., & Oswald, M. (2005). Developing inclusive school communities: Voices of parents of children with disabilities. Education as Change, 8, 80- 108.
Wertsch, J. V. (1995). The need for action in sociocultural research. In J. V. Wertsch, P. del Rio, & A. Alvarez, A. (Ed.), Sociocultural studies of mind (pp. 56-74). Cambridge, UK: Cambridge University Press.
Elizabeth B. Kozleski
Arizona State University
Petra Engelbrecht
North-West University (Potchefstroom Campus)
Robyn Hess
University of Northern Colorado
Estelle Swart
University of Stellenbosch
Irma Eloff
University of Pretoria
Marietjie Oswald
University of Stellenbosch
Amy Molina
University of Northern Colorado
Swati Jain
Swati Jain College
Authors' Note: We acknowledge the support of the National Institute for Urban School Improvement (http://www.urbanschools .org) under Grant H326B060012 and the National Center for Culturally Responsive Educational Systems (http://www.nccrest .org) under Grant H326E020003 awarded by the U.S. Department of Education's Office of Special Education Programs. Funding agency endorsement of the ideas presented in this article should not be inferred. Correspondence concerning this article should be addressed to Elizabeth B. Kozleski, Arizona State University, Mary Lou Fulton College of Education, Curriculum and Instruction, P.O. Box 87201, Tempe, AZ 85287-2011; e-mail: elizabeth .kozleski@asu.edu.
Elizabeth B. Kozleski, EdD, is a professor of special education at Arizona State University in Tempe. Her current interests include urban education, inclusive education, systems change, and teacher learning.
Petra Engelbrecht, PhD, is dean of the Faculty of Education at North-West University (Potchefstroom Campus) in South Africa. Her current interests include inclusive education and research capacity development.
Robyn Hess is an associate professor of school psychology at the University of Northern Colorado, focusing on school dropout and completion, especially among Latino students; culturally responsive assessment and intervention; systemic interventions; and stress and coping in children.
Estelle Swart, EdD, is a professor in educational psychology at the University of Stellenbosch. Her research focuses on leadership development for inclusive education and professional learning of teachers and psychologists.
Irma Eloff, PhD, is chair of the Department of Educational Psychology at the University of Pretoria, South Africa. Her research focuses on positive psychology, vulnerable children, and inclusion.
Marietjie Oswald, MEd, is a lecturer in educational psychology at the University of Stellenbosch, focusing on inclusive education, career education, and counseling and life skills education. She is currently working on her PhD, exploring the implementation of inclusive education in schools.
Amy Molina, MS, is a PhD candidate in school psychology. Her research interests include positive psychology, alternative school programming, and educational attainment among diverse populations.
Swati Jain, MS, owns and operates the Swati Jain College in Indore, India. Her research interests involve leadership for crosscultural innovation and sustainability, systems change, and student assessment studies.
Copyright PRO-ED Journals May 2008
(c) 2008 Journal of Special Education, The. Provided by ProQuest Information and Learning. All rights Reserved.
Source: Journal of Special Education, The
Coping with Oppositional Defiance
Coping with Oppositional Defiance
Does this sound like your child?
-
Often loses temper
- Often argues with adults
- Often actively defies or
refuses to comply with adults' requests or
rules
- Often blames others for
his or her misbehavior or mistakes
- Is often touchy or easily annoyed by
others
- Is often angry and resentful
- Is often spiteful and vindictive
Causes and Consequences:
It seems that oppositional defiant disorder arises out of a circular family dynamic. This is not to say that you
caused your child to have ODD. It is to say that there are characteristics about your child that resulted
in an unhealthy family cycle of interaction. An infant who is by nature more difficult, fussy, and colicky, may be harder to soothe and thus cause parents to become frustrated and to lack confidence in their parenting
skills. If they perceive their child as basically unresponsive, they may begin to anticipate that the child will be unresponsive or noncompliant and set up a self-fulfilling prophecy. As a result, the parent's anticipating
failure, may unresponsive or unreliable in return and inadvertently add to the child's feelings of irritability,
helplessness, neediness, and frustration.
As parents attempt to assert control by insisting on compliance in such areas as eating, toilet
training, sleeping, or speaking politely the child may demonstrate resistance by withholding or withdrawing or tantruming. As a child grows increasing negativism, defiance, and noncompliance become
misguided. But, these habitual ways of dealing with adults that persists long after the "terrible twos."
The more defiant and provocative the child's behavior, the more negative feedback is elicited from the parents. In their attempts to teach their child to behave properly, parent or authority
figures try reminding their child, lecturing them, removing privileges, berating, and physical
punishment, nagging and negotiating. Unfortunately, these behaviors give the child a sense of control and
therefore tend to increase the rate and intensity of non-compliance.Ultimately, it becomes a tug of war and a
battle of wills with everyone losing.
Because parents are so frustrated dealing with their child, their
system of discipline becomes inconsistent. At times they may be calm
and assertive. Other times they may explode in anger. At still other
times, they may withhold appropriate consequences which soon become
hollow threats. As the child continues to provoke and defy, parents often
lose control. Then, feeling sorrow and guilt, especially if they've
become verbally or physically explosive, parents may overcompensate with
excessive rewards or leniency in order to undo what they now perceive to
have been excessive discipline or punitive consequences.
When a child starts school, this pattern of passive aggressive,
oppositional behavior tends to provoke teachers and other children as well
an often begins a cycle of being denied recess, getting detentions or
suspensions; which further aggravates the problem
In many cases, oppositional disorders coexist with attention deficit/hyperactivity disorder. In this case, the
impulsivity and hyperactivity of ADHD can greatly amplify the defiance and
uncontrolled anger of ODD. Symptoms of ODD can also appear as part of major
depressive disorder, obsessive compulsive disorder, or mania. Some children
with separation anxiety disorder may also evidence oppositional
behaviors.
So, what do we do?
Unfortunately, there are no simple solutions. But, here are some of the key approaches.
Parent Training
Programs Some parents are helped through formal parent training programs.
The benefit of these programs lies in both parents learning to use the same techniques and to do so consistently. It involves parents learning to set the same standards and apply the same consequences
day in and day out so that oppositional and defiant children cannot pit once against the other or
push parents into over or under reacting and then feeling guilty for their own behaviors. Parents learn to communicate expectations and consequences clearly to their child, to enforce the rules
calmly but firmly, and to use positive reinforcement whenever they catch their child being good so they can increase the frequency of occurrence of desired behaviors.
Individual Psychotherapy
Finding a psychologist or play therapist with whom your child can develop a good relationship can be very
valuable. Often children with ODD feel as if they don't live up to their parent's
expectations and this frustration exacerbates their disorder.
When a therapist provides unconditional acceptance, the therapist is in a position
to help your child learn some effective anger management techniques that
decrease defiance and naturally lead to more positive parental feedback.
The therapist may also employ cognitive behavioral techniques to help your
child learn effective problem solving skills that will improve social
interactions inside and outside the home. The support gained through
therapy can counterbalance the frequent messages of failure to which the
child with ODD is often exposed.
Social Skills Training
Coupled with other therapies, social skills training has been effective in improving social behaviors that result from a child's angry, defiant approach to rules. Incorporating reinforcement
strategies and rewards for appropriate behavior helps children learn to generalize positive behavior.
Social skills training, can help children learn to evaluate social situations and adjust their behavior accordingly. Metaanalyses of research on social skills has shown that the only
successful social skills training interventions are those that provide training in the child's natural
environments (home and classroom) - so that generalization is built in.To accomplish this you will need your child's Individualized Education Plan (IEP) from school to includeCommunity Based Instruction using social skills training.
Medication is only recommended when the symptoms of ODD occur with other
conditions, such as ADHD, obsessive compulsive disorder (OCD), or anxiety
disorder. When stimulants are used to treat attention deficit/hyperactivity disorders, they also appear to lessen oppositional symptoms in the child. There is no medication specifically for treating
symptoms of ODD where there is no other emotional disorder. In lieu of medication, you might
wish to investigate EEG neurofeedback, a nonpharmacological intervention which is effective at teaching children to self-calm, thereby increasing their adaptability and decreasing oppositionalism that results from poor adaptability. In addition, if your child is often moody and angry, you may ask your pediatrician to explore the possibility of prescribing transcranial electrotherapy for your home. This involves the use of a
portable unit called Alpha Stim, which generates low voltage alpha waves (the kind of waves the brain generates when it is calm and focused). Your child can wear this noninvasive devise for 20-30
minutes per day, to induce a relaxed, peaceful state without need for medication.
Practical Suggestions for Parents
Enlist others to help you: You need help on a consistent basis. This means you need to
speak with your parents, your siblings, your husband's parents and siblings, your neighbors and let them know that your child has a disorder which is difficult to control and very demanding
on you as a parent. Therefore, you need help on a regular basis from now
until your child is grown. Ask each to commit to help in some concrete fashion. This might
mean that someone watches your child every week so you can go grocery
shopping without a hassle, it may mean that grandma has the kids for dinner
every Saturday so you and your spouse can have a meal and a conversation
without interruption. It might mean that Uncle Mike takes you son for a
bike ride on Sunday's after church so you and your husband can pay your
bills. You decide what you need, and ask each person in your support
network to make a specific commitment to help you. In short, do
everything you can to share the burden of parenting. This includes asking all
interested parties to learn about your child's disorder(s) and IDEA and
to participate in IEP meetings with the school district.
Set up an appropriate school program: If your child is not already classified,
make a written referral for your child to be evaluated for special education. Request a Functional Behavioral Analysis as part of the evaluation process. Once eligibility is determined, you want to
advocate for an IEP that include a Behavioral Intervention Plan with positive
behavioral supports to reduce the occurrence of oppositional and defiant behaviors. You also want this plan to stipulate that in or out of school suspensions may not be employed as a disciplinary measure with your child, and that your child may not lose recess. It is also important to have weekly counseling sessions with the school psychologist as part of your child's IEP with goals to develop relaxation and anger management skills, along with problem solving and coping mechanisms. Additionally,insist on having monthly parent training sessions in behavior management in your child's IEP so that you can carry over any effective interventions the school is employing to the home environment. Be certain that the IEP also indicates your child will be staying after school for aftercare and that a
staff member is to utilize this time to assist your child in completion of
all homework assignments and projects. This component is important because
it will eliminate a major source of conflict at home.
Finally, don't forget to make certain that the IEP includes community based instruction at
home and other locals your child frequently visits using social skills training.
Access community services:
Consider putting your child in daycare before and after school. Insist that homework is completed
in the afterschool program so that this source of conflict is eliminated from
the home environment. For weekends and holidays and summer vacations,
consider having your child participate in programs offered by Big Brother
and Big Sisters or Boy Scouts/Girl Scouts. Summer camps provide an
excellent opportunity for your child to "start over" with adults and
children who don't know their history of defiance and who will expect and
therefore automatically reinforce compliance. They also provide you much
needed time to self-nurture so that you will replenish your own
reserves and be better equipped to deal with your child when s/he arrives
home from camp. Don't forget to ask for help from your local religious
organization. Someone from your church or temple may be equipped
to provide some spiritual counseling for your child. This can be important
as prayers have been documented as an effective method of stress
management and anger control. Additionally, there may be someone who is
able to assist concretely by providing some much needed tutoring, or
picking up your families' groceries while they pick up theirs or even
picking up.
The last step is respite foster care on a regular
basis: If your child becomes too demanding and it begins to impact on your
own physical or mental health, consider respite foster care. This might
mean your child spending one weekend a month with a foster family in order
to provide a break for you to nurture not only yourself, but also
other children in the home, and your marriage. Many parents indicate that
they would feel like complete failures if this became necessary. In
reality, this is a healthy effective way to equip yourself to handle your
child's special needs over the long haul.
Make consequences relevant to the offense: Avoid using generic consequences such as time out
or grounding. Instead, customize the consequence to the offense. For instance, if your child throws a shoe and break your favorite crystal piece. Then, assign your child an hourly wage, and have him work over the
next several (days, weeks, months) to earn the money to replace that item.
Each day when it is time to do the extra chores, give a reminder that helps the child connect the behavior to the consequence. For instance, "Joey, it is time to rake the lawn to earn some more money towards paying for the crystal that broke when you choose to throw the shoe". If you child steals something, then the consequence might be a visit to the police station, witnessing some criminals in cells
and a discussion with a police officer about what happens to children who steal. If your child, lies then
the consequence might be to do a research report on the value of honesty.
Discover what your child is truly interested in:
Some children devote so much time to being disruptive that they never
develop any appropriate interest. This is another way that camps can be of
help. For instance, you might try a few sports camps, or a music camp, or
an art camp and in the process your child may discover something that
truly interests them; which can be used as a reward and a motivator during
the remainder of the year. If you haven't the funds for camps, try
your local YMCA as most will offer scholarships based on financial needs.
The YMCA and Big Brothers or Sisters and Scouting all offer positive
activities for your child to be involved in during the school year along
with opportunities to interact socially with nondisabled peers who may
provide good behavioral role models. These organizations all teach values
that include respecting parents and giving back to the community, and
thereby reinforce the values you are trying to teach your child.
·
Residential Schools:
If your child's behavioral problems grow to the point that you and your child's school have difficulty dealing
with them, consider a therapeutic residential school. This can be a
win-win-win situation. It alleviates the need for your ill-equipped local
school to address your child's behavioral needs, it provides, you, your
spouse and your other children extended periods of normalcy, and it
provides your child the structure and therapy that are needed in a
situation where they can no longer alienate those closest to them.
Additionally, when your child does come home for weekends, holidays and
vacation it is always an opportunity to start off on a positive note with a
clean slate. Moreover, relationships can be fostered while your child is
at school through letters, emails, on-line photo albums and phone calls
without having to deal with day to day conflict.
Someone to talk to: Whether it is a friend, relative, friend,
pastor, or a counselor, you need to be able to talk to someone on a regular
basis; and most especially when things are going badly. Issues you may
need some help with are:
· Carving
out time for your marriage
· Nurturing siblings of your difficult
child
· Communicating your child's home and community needs to
the
IEP team
· Issues that need to be addressed in your child's
behavioral
intervention plan
· Thinking about a residential
school
· Having a plan to deny privileges to a defiant child
without
denying siblings (i.e. someone to stay home with child when s/he
doesn't
deserve to go the movies but the other children do.
·
Considering respite foster care
· Dealing with constant lying
·
Dealing with thefts
· Coping with your child's physical
aggression
· Dealing with crimes that your child engages in
·
Disagreeing with your spouse about how to handle behaviors
·
Grieving the loss of the child you hoped for
· Seeing the school
system write off your child's needs
· Behavior management
techniques
· Effective advocacy within the educational
system
Some parents feel uncomfortable in face to face counseling. For
others
the only time they can squeeze in for sessions is in the evenings
when
their child is asleep by which time most therapists' offices are
closed.
Others don't want weekly assistance, but they'd like a familiar
person
they can contact when the need arises. In these situations,
internet
special needs coaching sessions may be a good alternative. You
schedule
these at your convenience when you need them and address your then
pressing
issues from the comfort of home. To schedule this type of session
go to
[http://www.specialeducationsupport.org/]
www.specialeducationsupport.org
and select the schedule tab.
How to begin
dealing with your child's behavior
· Start at ground zero. Tell
your child that his/her behavior
has not been acceptable and that the whole
family is going to start over.
Develop a list of expected behaviors and
consequences for noncompliance.
Post these in a predominant spot. Then,
develop a list of your child's
responsibilities and privileges that can
be earned by completing those
responsibilities without a hassle or
reminders. Start with only essentials
being provided: bedroom, basic
food, clothing etcetera. Make it so that
your children need to earn TV
time, computer time, having friends over,
visiting others, trips to the
library or bowling alley, and extra half hour
later bedtime, and so forth.
The children in your family without
oppositional and defiant behavior will
follow the same rules and as they
are already compliant should have no
problems earning their privileges and
setting a good role model.
- Build
on the positives, not the negatives. Create ways for your child
to
experience positive feedback. This might involve having them
participate
in a formal volunteer program in the community. Or, it may be
as simple as
asking them to tutor a younger sibling in an academic area
where they have
strength and then providing plenty of praise. Creating as
many
opportunities for positive reinforcement as possible, and in so
doing
create as many opportunities as possible for your child to help those
less
fortunate than themselves. This helps combat their feelings of
entitlement
and begin to understand the perspective and needs of others. It
also
provides opportunities for you to compliment their hard work in
their
undertaking. For instance, you might compliment your child for raking
a
disabled neighbor's lawn, for collecting recycling, for donating some
of
their allowance to a charitable organization for children, for
volunteering
at the humane society, for singing Christmas Carols in
nursing homes,
think of ways for your child to give back to the community;
and praise
those behaviors. As a general rule, each day children should
hear more
positive than negative comments about themselves.
- Use
teachable moments to your advantage. Kids with ODD would like to do
well,
but they have been prewired such that they lack the necessary
flexibility
to adapt easily to environmental demands. You can help your
child by
teaching adaptive skills. The easiest way to do this is to model
adaptive
behavior and to verbally mediate your actions. For instance, when
someone
cuts you off in the Wal-mart parking lot and steals the spot you
have been
waiting for. You can calmly drive on while saying: "That
person's rude
behavior was very upsetting, so I'm going to breathe
deeply to recompose
myself." Or, I'm really frustrated that I didn't
receive a promotion
at work after all the extra hours I have been putting
in. I know Joe got
the promotion just because he is friends with my boss.
So, I'm going to
direct the energy from my anger into looking for a new
job with more
advancement opportunities. Maybe you can help me print
copies of my resume
and search the internet for possible openings."
Involving your child in
these types of constructive actions can help your
child learn to
effectively direct their own anger energy into similar
constructive
activities. Or, you might say, "I'm tired and frustrated
and feel
grumpy, so I'm going for a walk to refresh myself. Would you
like to
join me?" Physical activity releases endorphins that improve our
moods,
so modeling physical exercise as an outlet for anger or frustration
is very
positive. You can also direct teach. For instance, if you see a
peer
tease your child, before the situation escalates you can step in and
say:
"Bob, I heard you teasing Joey. I'm certain that hurt his
feelings.
Now Joey may choose to ask you to go home, or he can choose to
ask you for
an apology. Joey what do you want to do?" Bear in mind
though, that
oppositional children tend to respond more positively to
verbally mediated
role modeling than they do to direct teaching.
- Pick your battles. Most
children with ODD are doing quite a few things
that you dislike, but if
everything is a battle you will get nowhere. If
something is simply
annoying you might choose to ignore the behavior. For
instance, if your
child interrupts while you are on the phone you might
tell the other party.
I need to get off the phone now and I'll call you
back later. Then, when
your child requests attention appropriately. Thank
him or her for waiting
until you were free to speak. Some things you may
be willing to
occasionally negotiate on. For example, if homework is always
to be done
before friend's visit; but a very good friend is visiting from
out of
town and has only this time to visit you might say to your child:
"Since
Paul is a special friend and is only here for today, we will make
an
exception and let you play now and do your homework later. But, if
your
homework is not completed without hassle by 7pm, then the next time
Paul
visits, we will not make this special exception." Some things
should
never be negotiated: being disrespectful, lying, stealing or being
violent
must always meet with consistent consequences.
- Take a break from
the conflict. If you lose your cool, the child will
see it and know that
s/he has the upper hand. Learn to take time to say.
"Right now, I am
very angry with you. Go to your room, while I think
about how we will deal
with this". Then, call a resource person or do
something that helps you
calm down. Later, when both spouses are present,
address the issue
jointly.
- Don't keep your child's misbehaviors a secret: When
your child has
chosen to be defiant and have a consequence doesn't hide
it. If they
can't go to the movies with Uncle Mike because they stole
something, tell
Uncle Mike the full reason. This may bring the reproach of
others to back
up your position that such behaviors are not acceptable. If
your child's
best friend may not come over because your child did not
complete his
homework, let the friend know: "Joey can't play today
because he
hasn't completed his homework. You may help him with his
homework or you
may come over another day."
- Quality time: When you
have a child who is oppositional and defiant you
may feel as it all or most
of your interaction with that child are
stressful and conflict ridden. To
counter this, when you child arrives
home, make certain you have a full
half hour free of other commitments.
Devote this time to engaging in an
activity of preference with your child.
For example, your child might enjoy
Webkinz; if so play this with him. Or,
your child might like a particular
Game Boy or Nintendo Game. If so, learn
to play it and have a contest.
Or, perhaps you have a child, who likes
certain board games, then sit down
and share some pleasant time together.
It might also be time painting or
drawing, or working on a wood working
project. The activities don't
matter, as long as your child enjoys it
and you get at least a half hour a
day of uninterrupted time with your
child engaged in a positive activity
together.
Additional Advice...
· Don't take it personally.
You child may call you
"mean", but they are really frustrated by their
own lack of
adaptability and are lashing out at the nearest target. When
this happens,
just tell your child that even though they are angry with
you, you love
them and will continue to do what is best for them.
·
These children are experts at pushing your buttons, so don't
let them.
Keep your composure, no matter how difficult. Do not fight with
your child.
If need be, walk away, take a bubble bath, use the Alpha Stim,
do deep
breathing exercises. Then, when you are calm, and your child is
calm
address the issue that gave rise to the conflict.
· Give genuine
choices. Give them appropriate control when you
can. For example, "Joey,
you need to clean your room today. You may do
it now and then have the
afternoon to play. Or, you can play for just two
hours and then stop to do
your room. Which do you prefer?" "Or, "
Joey, your teacher says your
are behind in AR reading. Do you want me to
read with you a half hour each
night at bedtime, or do you want to read a
half hour by yourself every day
before going out to play?"
· Connect with what you like about
the child. Don't forget
that he or she is a child with many wonderful
features. Work on that part
of your relationship and help them remember
who they are
Overall tips . . .
· Intervention should be as
early as possible.
· It should cover as much of the child's day
as possible every
day
· It should include all caregivers
·
It should be consistent across all environments and across
time
·
It should be maintained as long as needed (basically until
your child is
grown)
· It should include many different types of interventions
and
not just focus on one aspect of the problem
ADDITIONAL SITES WITH
INFORMATION ON ODD:
[http://www.adhd.com.au/conduct.html]
http://www.adhd.com.au/conduct.html
- Causes and treatments for
ODD/CD
[http://childparenting.about.com/library/blchildbehaviordisorder.htm]
http://childparenting.about.com/library/blchildbehaviordisorder.htm
-
Guide to resources for parents of children with behavioral and
mental
problems
[http://www.focusas.com/BehavioralDisorders.html]
www.focusas.com/BehavioralDisorders.html
- Broad resources addressing a
variety of problem behaviors and disorders
of children, adolescents and
young
adults
[http://groups.yahoo.com/group/oddparentsroom/]
http://groups.yahoo.com/group/oddparentsroom/
Chatroom for parents with
children with
ODD
[http://www.haworthpress.com/store/sampleText/J007.pdf]
www.haworthpress.com/store/sampleText/J007.pdf
- Innovative Mental Health
Interventions for Children: Programs that
Work
[http://www.ici2.umn.edu/preschoolbehavior/tip_sheets/hostagg.pdf]
www.ici2.umn.edu/preschoolbehavior/tip_sheets/hostagg.pdf
- Preventing and
dealing with challenging
behavior
[http://www.ici2.umn.edu/preschoolbehavior/tip_sheets/passagg.htm]
www.ici2.umn.edu/preschoolbehavior/tip_sheets/passagg.htm
- Dealing with
Passive Aggressive
Behavior
[http://www.klis.com/chandler/pamphlet/oddcd/oddcdpamphlet.htm]
http://www.klis.com/chandler/pamphlet/oddcd/oddcdpamphlet.htm
Overview of
ODD, case examples, non-medical strategies for dealing with
ODD/CD
[http://www.lifematters.com/4goals.html]
www.lifematters.com/4goals.html
- An article that addresses the children's
underlying goals of typical
misbehavior and how adults can recognize
them
[http://www.youthchg.com/hottopic.html]
www.youthchg.com/hottopic.html -
Interventions for aggressive behavior in
children.
References
American Psychiatric Association (2000). Diagnostic
and statistical
manual of mental disorders (4th ed., rev.). Washington DC:
Author.
Carson, R. C., Butcher, J. N., & Mineka, S. (1998). Abnormal
psychology
and modern life: Tenth edition. New York: Addison Wesley
Longman.
Chandler, J. (2001). Oppositional Defiant Disorder/Conduct
Disorder
Pamphlet.
26 Mar, 2003.
Jabs, C. (1999). Is your child
too defiant? Working Mother, Mar. 99.
03 Jun, 2003.
Kazdin, A. E., & Weisz, J. R. (2003). Evidence-based
psychotherapies for
children and adolescents. New York: Guilford
Press.
Minke, K. M., & Bear, G. C. (2000). Preventing school problems
-
Promoting school success: Programs and strategies that work.
Bethesda, MD: National Association of School Psychologists.
Quay, H. C., &
Hogan, A. E. (1999). Handbook of disruptive behavior
disorders. New York:
Kluwer Academic/Plenum Publishers.
Webster-Stratton, C., & Taylor, T.
(2001). Nipping early risk factors in
the bud: Preventing substance abuse,
delinquency, and violence in
adolescence through interventions targeted at
young children (0-8 years).
Prevention Science, 2(3), 165-192.
Presented as
a community service by,
Susan L. Crum, B.S., M.S., Ph.D.
Special Needs
Coach
Able2Learn
Email: [mailto:Able2learn@live.com]
Able2learn@live.com
Voice and Fax: 863-471-0281
Website:
specialeducationsupport.org
This message was sent by: Able2Learn, 2880 Zankor Road, San Jose, CA 95134
Does this sound like your child?
-
Often loses temper
- Often argues with adults
- Often actively defies or
refuses to comply with adults' requests or
rules
- Often blames others for
his or her misbehavior or mistakes
- Is often touchy or easily annoyed by
others
- Is often angry and resentful
- Is often spiteful and vindictive
Causes and Consequences:
It seems that oppositional defiant disorder arises out of a circular family dynamic. This is not to say that you
caused your child to have ODD. It is to say that there are characteristics about your child that resulted
in an unhealthy family cycle of interaction. An infant who is by nature more difficult, fussy, and colicky, may be harder to soothe and thus cause parents to become frustrated and to lack confidence in their parenting
skills. If they perceive their child as basically unresponsive, they may begin to anticipate that the child will be unresponsive or noncompliant and set up a self-fulfilling prophecy. As a result, the parent's anticipating
failure, may unresponsive or unreliable in return and inadvertently add to the child's feelings of irritability,
helplessness, neediness, and frustration.
As parents attempt to assert control by insisting on compliance in such areas as eating, toilet
training, sleeping, or speaking politely the child may demonstrate resistance by withholding or withdrawing or tantruming. As a child grows increasing negativism, defiance, and noncompliance become
misguided. But, these habitual ways of dealing with adults that persists long after the "terrible twos."
The more defiant and provocative the child's behavior, the more negative feedback is elicited from the parents. In their attempts to teach their child to behave properly, parent or authority
figures try reminding their child, lecturing them, removing privileges, berating, and physical
punishment, nagging and negotiating. Unfortunately, these behaviors give the child a sense of control and
therefore tend to increase the rate and intensity of non-compliance.Ultimately, it becomes a tug of war and a
battle of wills with everyone losing.
Because parents are so frustrated dealing with their child, their
system of discipline becomes inconsistent. At times they may be calm
and assertive. Other times they may explode in anger. At still other
times, they may withhold appropriate consequences which soon become
hollow threats. As the child continues to provoke and defy, parents often
lose control. Then, feeling sorrow and guilt, especially if they've
become verbally or physically explosive, parents may overcompensate with
excessive rewards or leniency in order to undo what they now perceive to
have been excessive discipline or punitive consequences.
When a child starts school, this pattern of passive aggressive,
oppositional behavior tends to provoke teachers and other children as well
an often begins a cycle of being denied recess, getting detentions or
suspensions; which further aggravates the problem
In many cases, oppositional disorders coexist with attention deficit/hyperactivity disorder. In this case, the
impulsivity and hyperactivity of ADHD can greatly amplify the defiance and
uncontrolled anger of ODD. Symptoms of ODD can also appear as part of major
depressive disorder, obsessive compulsive disorder, or mania. Some children
with separation anxiety disorder may also evidence oppositional
behaviors.
So, what do we do?
Unfortunately, there are no simple solutions. But, here are some of the key approaches.
Parent Training
Programs Some parents are helped through formal parent training programs.
The benefit of these programs lies in both parents learning to use the same techniques and to do so consistently. It involves parents learning to set the same standards and apply the same consequences
day in and day out so that oppositional and defiant children cannot pit once against the other or
push parents into over or under reacting and then feeling guilty for their own behaviors. Parents learn to communicate expectations and consequences clearly to their child, to enforce the rules
calmly but firmly, and to use positive reinforcement whenever they catch their child being good so they can increase the frequency of occurrence of desired behaviors.
Individual Psychotherapy
Finding a psychologist or play therapist with whom your child can develop a good relationship can be very
valuable. Often children with ODD feel as if they don't live up to their parent's
expectations and this frustration exacerbates their disorder.
When a therapist provides unconditional acceptance, the therapist is in a position
to help your child learn some effective anger management techniques that
decrease defiance and naturally lead to more positive parental feedback.
The therapist may also employ cognitive behavioral techniques to help your
child learn effective problem solving skills that will improve social
interactions inside and outside the home. The support gained through
therapy can counterbalance the frequent messages of failure to which the
child with ODD is often exposed.
Social Skills Training
Coupled with other therapies, social skills training has been effective in improving social behaviors that result from a child's angry, defiant approach to rules. Incorporating reinforcement
strategies and rewards for appropriate behavior helps children learn to generalize positive behavior.
Social skills training, can help children learn to evaluate social situations and adjust their behavior accordingly. Metaanalyses of research on social skills has shown that the only
successful social skills training interventions are those that provide training in the child's natural
environments (home and classroom) - so that generalization is built in.To accomplish this you will need your child's Individualized Education Plan (IEP) from school to includeCommunity Based Instruction using social skills training.
Medication is only recommended when the symptoms of ODD occur with other
conditions, such as ADHD, obsessive compulsive disorder (OCD), or anxiety
disorder. When stimulants are used to treat attention deficit/hyperactivity disorders, they also appear to lessen oppositional symptoms in the child. There is no medication specifically for treating
symptoms of ODD where there is no other emotional disorder. In lieu of medication, you might
wish to investigate EEG neurofeedback, a nonpharmacological intervention which is effective at teaching children to self-calm, thereby increasing their adaptability and decreasing oppositionalism that results from poor adaptability. In addition, if your child is often moody and angry, you may ask your pediatrician to explore the possibility of prescribing transcranial electrotherapy for your home. This involves the use of a
portable unit called Alpha Stim, which generates low voltage alpha waves (the kind of waves the brain generates when it is calm and focused). Your child can wear this noninvasive devise for 20-30
minutes per day, to induce a relaxed, peaceful state without need for medication.
Practical Suggestions for Parents
Enlist others to help you: You need help on a consistent basis. This means you need to
speak with your parents, your siblings, your husband's parents and siblings, your neighbors and let them know that your child has a disorder which is difficult to control and very demanding
on you as a parent. Therefore, you need help on a regular basis from now
until your child is grown. Ask each to commit to help in some concrete fashion. This might
mean that someone watches your child every week so you can go grocery
shopping without a hassle, it may mean that grandma has the kids for dinner
every Saturday so you and your spouse can have a meal and a conversation
without interruption. It might mean that Uncle Mike takes you son for a
bike ride on Sunday's after church so you and your husband can pay your
bills. You decide what you need, and ask each person in your support
network to make a specific commitment to help you. In short, do
everything you can to share the burden of parenting. This includes asking all
interested parties to learn about your child's disorder(s) and IDEA and
to participate in IEP meetings with the school district.
Set up an appropriate school program: If your child is not already classified,
make a written referral for your child to be evaluated for special education. Request a Functional Behavioral Analysis as part of the evaluation process. Once eligibility is determined, you want to
advocate for an IEP that include a Behavioral Intervention Plan with positive
behavioral supports to reduce the occurrence of oppositional and defiant behaviors. You also want this plan to stipulate that in or out of school suspensions may not be employed as a disciplinary measure with your child, and that your child may not lose recess. It is also important to have weekly counseling sessions with the school psychologist as part of your child's IEP with goals to develop relaxation and anger management skills, along with problem solving and coping mechanisms. Additionally,insist on having monthly parent training sessions in behavior management in your child's IEP so that you can carry over any effective interventions the school is employing to the home environment. Be certain that the IEP also indicates your child will be staying after school for aftercare and that a
staff member is to utilize this time to assist your child in completion of
all homework assignments and projects. This component is important because
it will eliminate a major source of conflict at home.
Finally, don't forget to make certain that the IEP includes community based instruction at
home and other locals your child frequently visits using social skills training.
Access community services:
Consider putting your child in daycare before and after school. Insist that homework is completed
in the afterschool program so that this source of conflict is eliminated from
the home environment. For weekends and holidays and summer vacations,
consider having your child participate in programs offered by Big Brother
and Big Sisters or Boy Scouts/Girl Scouts. Summer camps provide an
excellent opportunity for your child to "start over" with adults and
children who don't know their history of defiance and who will expect and
therefore automatically reinforce compliance. They also provide you much
needed time to self-nurture so that you will replenish your own
reserves and be better equipped to deal with your child when s/he arrives
home from camp. Don't forget to ask for help from your local religious
organization. Someone from your church or temple may be equipped
to provide some spiritual counseling for your child. This can be important
as prayers have been documented as an effective method of stress
management and anger control. Additionally, there may be someone who is
able to assist concretely by providing some much needed tutoring, or
picking up your families' groceries while they pick up theirs or even
picking up.
The last step is respite foster care on a regular
basis: If your child becomes too demanding and it begins to impact on your
own physical or mental health, consider respite foster care. This might
mean your child spending one weekend a month with a foster family in order
to provide a break for you to nurture not only yourself, but also
other children in the home, and your marriage. Many parents indicate that
they would feel like complete failures if this became necessary. In
reality, this is a healthy effective way to equip yourself to handle your
child's special needs over the long haul.
Make consequences relevant to the offense: Avoid using generic consequences such as time out
or grounding. Instead, customize the consequence to the offense. For instance, if your child throws a shoe and break your favorite crystal piece. Then, assign your child an hourly wage, and have him work over the
next several (days, weeks, months) to earn the money to replace that item.
Each day when it is time to do the extra chores, give a reminder that helps the child connect the behavior to the consequence. For instance, "Joey, it is time to rake the lawn to earn some more money towards paying for the crystal that broke when you choose to throw the shoe". If you child steals something, then the consequence might be a visit to the police station, witnessing some criminals in cells
and a discussion with a police officer about what happens to children who steal. If your child, lies then
the consequence might be to do a research report on the value of honesty.
Discover what your child is truly interested in:
Some children devote so much time to being disruptive that they never
develop any appropriate interest. This is another way that camps can be of
help. For instance, you might try a few sports camps, or a music camp, or
an art camp and in the process your child may discover something that
truly interests them; which can be used as a reward and a motivator during
the remainder of the year. If you haven't the funds for camps, try
your local YMCA as most will offer scholarships based on financial needs.
The YMCA and Big Brothers or Sisters and Scouting all offer positive
activities for your child to be involved in during the school year along
with opportunities to interact socially with nondisabled peers who may
provide good behavioral role models. These organizations all teach values
that include respecting parents and giving back to the community, and
thereby reinforce the values you are trying to teach your child.
·
Residential Schools:
If your child's behavioral problems grow to the point that you and your child's school have difficulty dealing
with them, consider a therapeutic residential school. This can be a
win-win-win situation. It alleviates the need for your ill-equipped local
school to address your child's behavioral needs, it provides, you, your
spouse and your other children extended periods of normalcy, and it
provides your child the structure and therapy that are needed in a
situation where they can no longer alienate those closest to them.
Additionally, when your child does come home for weekends, holidays and
vacation it is always an opportunity to start off on a positive note with a
clean slate. Moreover, relationships can be fostered while your child is
at school through letters, emails, on-line photo albums and phone calls
without having to deal with day to day conflict.
Someone to talk to: Whether it is a friend, relative, friend,
pastor, or a counselor, you need to be able to talk to someone on a regular
basis; and most especially when things are going badly. Issues you may
need some help with are:
· Carving
out time for your marriage
· Nurturing siblings of your difficult
child
· Communicating your child's home and community needs to
the
IEP team
· Issues that need to be addressed in your child's
behavioral
intervention plan
· Thinking about a residential
school
· Having a plan to deny privileges to a defiant child
without
denying siblings (i.e. someone to stay home with child when s/he
doesn't
deserve to go the movies but the other children do.
·
Considering respite foster care
· Dealing with constant lying
·
Dealing with thefts
· Coping with your child's physical
aggression
· Dealing with crimes that your child engages in
·
Disagreeing with your spouse about how to handle behaviors
·
Grieving the loss of the child you hoped for
· Seeing the school
system write off your child's needs
· Behavior management
techniques
· Effective advocacy within the educational
system
Some parents feel uncomfortable in face to face counseling. For
others
the only time they can squeeze in for sessions is in the evenings
when
their child is asleep by which time most therapists' offices are
closed.
Others don't want weekly assistance, but they'd like a familiar
person
they can contact when the need arises. In these situations,
internet
special needs coaching sessions may be a good alternative. You
schedule
these at your convenience when you need them and address your then
pressing
issues from the comfort of home. To schedule this type of session
go to
[http://www.specialeducationsupport.org/]
www.specialeducationsupport.org
and select the schedule tab.
How to begin
dealing with your child's behavior
· Start at ground zero. Tell
your child that his/her behavior
has not been acceptable and that the whole
family is going to start over.
Develop a list of expected behaviors and
consequences for noncompliance.
Post these in a predominant spot. Then,
develop a list of your child's
responsibilities and privileges that can
be earned by completing those
responsibilities without a hassle or
reminders. Start with only essentials
being provided: bedroom, basic
food, clothing etcetera. Make it so that
your children need to earn TV
time, computer time, having friends over,
visiting others, trips to the
library or bowling alley, and extra half hour
later bedtime, and so forth.
The children in your family without
oppositional and defiant behavior will
follow the same rules and as they
are already compliant should have no
problems earning their privileges and
setting a good role model.
- Build
on the positives, not the negatives. Create ways for your child
to
experience positive feedback. This might involve having them
participate
in a formal volunteer program in the community. Or, it may be
as simple as
asking them to tutor a younger sibling in an academic area
where they have
strength and then providing plenty of praise. Creating as
many
opportunities for positive reinforcement as possible, and in so
doing
create as many opportunities as possible for your child to help those
less
fortunate than themselves. This helps combat their feelings of
entitlement
and begin to understand the perspective and needs of others. It
also
provides opportunities for you to compliment their hard work in
their
undertaking. For instance, you might compliment your child for raking
a
disabled neighbor's lawn, for collecting recycling, for donating some
of
their allowance to a charitable organization for children, for
volunteering
at the humane society, for singing Christmas Carols in
nursing homes,
think of ways for your child to give back to the community;
and praise
those behaviors. As a general rule, each day children should
hear more
positive than negative comments about themselves.
- Use
teachable moments to your advantage. Kids with ODD would like to do
well,
but they have been prewired such that they lack the necessary
flexibility
to adapt easily to environmental demands. You can help your
child by
teaching adaptive skills. The easiest way to do this is to model
adaptive
behavior and to verbally mediate your actions. For instance, when
someone
cuts you off in the Wal-mart parking lot and steals the spot you
have been
waiting for. You can calmly drive on while saying: "That
person's rude
behavior was very upsetting, so I'm going to breathe
deeply to recompose
myself." Or, I'm really frustrated that I didn't
receive a promotion
at work after all the extra hours I have been putting
in. I know Joe got
the promotion just because he is friends with my boss.
So, I'm going to
direct the energy from my anger into looking for a new
job with more
advancement opportunities. Maybe you can help me print
copies of my resume
and search the internet for possible openings."
Involving your child in
these types of constructive actions can help your
child learn to
effectively direct their own anger energy into similar
constructive
activities. Or, you might say, "I'm tired and frustrated
and feel
grumpy, so I'm going for a walk to refresh myself. Would you
like to
join me?" Physical activity releases endorphins that improve our
moods,
so modeling physical exercise as an outlet for anger or frustration
is very
positive. You can also direct teach. For instance, if you see a
peer
tease your child, before the situation escalates you can step in and
say:
"Bob, I heard you teasing Joey. I'm certain that hurt his
feelings.
Now Joey may choose to ask you to go home, or he can choose to
ask you for
an apology. Joey what do you want to do?" Bear in mind
though, that
oppositional children tend to respond more positively to
verbally mediated
role modeling than they do to direct teaching.
- Pick your battles. Most
children with ODD are doing quite a few things
that you dislike, but if
everything is a battle you will get nowhere. If
something is simply
annoying you might choose to ignore the behavior. For
instance, if your
child interrupts while you are on the phone you might
tell the other party.
I need to get off the phone now and I'll call you
back later. Then, when
your child requests attention appropriately. Thank
him or her for waiting
until you were free to speak. Some things you may
be willing to
occasionally negotiate on. For example, if homework is always
to be done
before friend's visit; but a very good friend is visiting from
out of
town and has only this time to visit you might say to your child:
"Since
Paul is a special friend and is only here for today, we will make
an
exception and let you play now and do your homework later. But, if
your
homework is not completed without hassle by 7pm, then the next time
Paul
visits, we will not make this special exception." Some things
should
never be negotiated: being disrespectful, lying, stealing or being
violent
must always meet with consistent consequences.
- Take a break from
the conflict. If you lose your cool, the child will
see it and know that
s/he has the upper hand. Learn to take time to say.
"Right now, I am
very angry with you. Go to your room, while I think
about how we will deal
with this". Then, call a resource person or do
something that helps you
calm down. Later, when both spouses are present,
address the issue
jointly.
- Don't keep your child's misbehaviors a secret: When
your child has
chosen to be defiant and have a consequence doesn't hide
it. If they
can't go to the movies with Uncle Mike because they stole
something, tell
Uncle Mike the full reason. This may bring the reproach of
others to back
up your position that such behaviors are not acceptable. If
your child's
best friend may not come over because your child did not
complete his
homework, let the friend know: "Joey can't play today
because he
hasn't completed his homework. You may help him with his
homework or you
may come over another day."
- Quality time: When you
have a child who is oppositional and defiant you
may feel as it all or most
of your interaction with that child are
stressful and conflict ridden. To
counter this, when you child arrives
home, make certain you have a full
half hour free of other commitments.
Devote this time to engaging in an
activity of preference with your child.
For example, your child might enjoy
Webkinz; if so play this with him. Or,
your child might like a particular
Game Boy or Nintendo Game. If so, learn
to play it and have a contest.
Or, perhaps you have a child, who likes
certain board games, then sit down
and share some pleasant time together.
It might also be time painting or
drawing, or working on a wood working
project. The activities don't
matter, as long as your child enjoys it
and you get at least a half hour a
day of uninterrupted time with your
child engaged in a positive activity
together.
Additional Advice...
· Don't take it personally.
You child may call you
"mean", but they are really frustrated by their
own lack of
adaptability and are lashing out at the nearest target. When
this happens,
just tell your child that even though they are angry with
you, you love
them and will continue to do what is best for them.
·
These children are experts at pushing your buttons, so don't
let them.
Keep your composure, no matter how difficult. Do not fight with
your child.
If need be, walk away, take a bubble bath, use the Alpha Stim,
do deep
breathing exercises. Then, when you are calm, and your child is
calm
address the issue that gave rise to the conflict.
· Give genuine
choices. Give them appropriate control when you
can. For example, "Joey,
you need to clean your room today. You may do
it now and then have the
afternoon to play. Or, you can play for just two
hours and then stop to do
your room. Which do you prefer?" "Or, "
Joey, your teacher says your
are behind in AR reading. Do you want me to
read with you a half hour each
night at bedtime, or do you want to read a
half hour by yourself every day
before going out to play?"
· Connect with what you like about
the child. Don't forget
that he or she is a child with many wonderful
features. Work on that part
of your relationship and help them remember
who they are
Overall tips . . .
· Intervention should be as
early as possible.
· It should cover as much of the child's day
as possible every
day
· It should include all caregivers
·
It should be consistent across all environments and across
time
·
It should be maintained as long as needed (basically until
your child is
grown)
· It should include many different types of interventions
and
not just focus on one aspect of the problem
ADDITIONAL SITES WITH
INFORMATION ON ODD:
[http://www.adhd.com.au/conduct.html]
http://www.adhd.com.au/conduct.html
- Causes and treatments for
ODD/CD
[http://childparenting.about.com/library/blchildbehaviordisorder.htm]
http://childparenting.about.com/library/blchildbehaviordisorder.htm
-
Guide to resources for parents of children with behavioral and
mental
problems
[http://www.focusas.com/BehavioralDisorders.html]
www.focusas.com/BehavioralDisorders.html
- Broad resources addressing a
variety of problem behaviors and disorders
of children, adolescents and
young
adults
[http://groups.yahoo.com/group/oddparentsroom/]
http://groups.yahoo.com/group/oddparentsroom/
Chatroom for parents with
children with
ODD
[http://www.haworthpress.com/store/sampleText/J007.pdf]
www.haworthpress.com/store/sampleText/J007.pdf
- Innovative Mental Health
Interventions for Children: Programs that
Work
[http://www.ici2.umn.edu/preschoolbehavior/tip_sheets/hostagg.pdf]
www.ici2.umn.edu/preschoolbehavior/tip_sheets/hostagg.pdf
- Preventing and
dealing with challenging
behavior
[http://www.ici2.umn.edu/preschoolbehavior/tip_sheets/passagg.htm]
www.ici2.umn.edu/preschoolbehavior/tip_sheets/passagg.htm
- Dealing with
Passive Aggressive
Behavior
[http://www.klis.com/chandler/pamphlet/oddcd/oddcdpamphlet.htm]
http://www.klis.com/chandler/pamphlet/oddcd/oddcdpamphlet.htm
Overview of
ODD, case examples, non-medical strategies for dealing with
ODD/CD
[http://www.lifematters.com/4goals.html]
www.lifematters.com/4goals.html
- An article that addresses the children's
underlying goals of typical
misbehavior and how adults can recognize
them
[http://www.youthchg.com/hottopic.html]
www.youthchg.com/hottopic.html -
Interventions for aggressive behavior in
children.
References
American Psychiatric Association (2000). Diagnostic
and statistical
manual of mental disorders (4th ed., rev.). Washington DC:
Author.
Carson, R. C., Butcher, J. N., & Mineka, S. (1998). Abnormal
psychology
and modern life: Tenth edition. New York: Addison Wesley
Longman.
Chandler, J. (2001). Oppositional Defiant Disorder/Conduct
Disorder
Pamphlet.
26 Mar, 2003.
Jabs, C. (1999). Is your child
too defiant? Working Mother, Mar. 99.
03 Jun, 2003.
Kazdin, A. E., & Weisz, J. R. (2003). Evidence-based
psychotherapies for
children and adolescents. New York: Guilford
Press.
Minke, K. M., & Bear, G. C. (2000). Preventing school problems
-
Promoting school success: Programs and strategies that work.
Bethesda, MD: National Association of School Psychologists.
Quay, H. C., &
Hogan, A. E. (1999). Handbook of disruptive behavior
disorders. New York:
Kluwer Academic/Plenum Publishers.
Webster-Stratton, C., & Taylor, T.
(2001). Nipping early risk factors in
the bud: Preventing substance abuse,
delinquency, and violence in
adolescence through interventions targeted at
young children (0-8 years).
Prevention Science, 2(3), 165-192.
Presented as
a community service by,
Susan L. Crum, B.S., M.S., Ph.D.
Special Needs
Coach
Able2Learn
Email: [mailto:Able2learn@live.com]
Able2learn@live.com
Voice and Fax: 863-471-0281
Website:
specialeducationsupport.org
This message was sent by: Able2Learn, 2880 Zankor Road, San Jose, CA 95134
In a class of their own
newsday.com/news/local/longislandlife/ny-lfcov0622,0,29017.story
Newsday.com
2008 Graduation Issue
In a class of their own
BY LAURA ALBANESE
lilife@newsday.com
Jennifer Zwilling stands in front of a classroom packed to the brim with eagle-eyed elementary school students and asks the one thing that would terrify most teenagers to know: "Do you see anything that maybe I'm doing that looks a little different?"
The hands shoot up in a flurry, and the answers come in almost just as fast: You're blinking your eyes, you twitch your nose, you move your leg sometimes. Zwilling, 16 years old, takes it in stride and continues her lesson: People with Tourette syndrome, she explains throughout, are just like you. They can stand in front of a classroom and have a conversation; they go to school, have friends and, she adds as a caveat, are not contagious.
Zwilling, though, is unlike most people, but not because of any disorder. Her tics -- and they are seldom -- would likely be closer to undetectable if someone didn't know to look. Hiding her condition, she admitted, was an attractive prospect when she was about to hit her teen years, but instead, Zwilling, now 18, chose the path of disclosure.
She didn't do it halfway, either. The video of Zwilling teaching the class is available on the Web -- meant as a teaching tool for speakers in her Tourette Syndrome Youth Ambassador program. Zwilling, who was 12 when she approached the Tourette Syndrome Association with her idea of peers educating peers, has seen the program begin to flower into a multinational initiative to teach understanding and awareness in schools.
And Zwilling, now a senior at Jericho High School, isn't alone in her achievements or her initiative. Her classmate Justin Resnick has had a different approach and a different cause, but similar success.
The benefits of basketball
Where Zwilling went global, Resnick was intent on focusing on the local. After his cousin was diagnosed with autism a year and a half ago before reaching the age of 2, Resnick, who had previously looked after two autistic children as a camp counselor at Miss Debbie's Work of Heart in South Huntington, sprang into action. Lending his services to Autism Speaks, the nation's leading autism-related nonprofit, was the most obvious choice, he said, but not the one he was most comfortable with.
"Justin said, 'You know, I feel like with these big things I'm not going to make a difference,'" said Peter Resnick, Justin's father.
"I wasn't going to see the effect," Justin added.
His mission brought him to Google, and Google brought him to Ascent: A School for Individuals with Autism, a private school in Deer Park that had for years scrambled for cash just to keep its doors open. In a coincidence, the president, Al Eskanazy, had been a former associate of
Peter Resnick, and soon Justin, Peter and his wife, Lauren, a speech pathologist who has worked extensively with autistic children, made the trip to Ascent.
What Justin Resnick saw there would prove to motivate him for months to come.
"The children Justin had seen in the camp were higher functioning," said Lauren Resnick, who ran the camp as part of Up Wee Grow, which specializes in speech therapy and special education. "These were children that weren't really speaking. They're not even able to put their clothes on or brush their teeth."
Added Justin: "I literally don't think I spoke the entire time that I was there. It was unbelievable. After that, I was like, 'This is what we have to raise the money for.' It was obvious."
And Resnick, an Emory University-bound varsity basketball player, had just the thing. He would convince the school to hold a charity basketball event, find sponsors, make up fliers and charge admission. It would be held at Jericho's four pristine basketball courts, and all the money would go to Ascent. It was a lofty goal, to be sure, and the technical and legal quandaries gave the school pause, but Resnick was ready for the challenge.
He made a PowerPoint presentation, petitioned the administration and started a committee to organize the event. Jericho, though, remained hesitant. There was the issue of liability and timing. Resnick countered: Roslyn High School was interested, and he could take the event elsewhere if necessary. Jericho finally agreed, and nearly eight months after the original idea, "Ally-Oop for Autism" was on.
The first event, held on April 21, 2007, raised $101,000. By then, Jericho and Roslyn were hugely enthusiastic and supportive. The same event was held a year later on March 29 with both schools on board. It raised about $108,000.
"We had no idea" that it would be that successful, said Dr. Nancy Shamow, Ascent's executive director. "We were all amazed. It was wonderful."
The Ascent school teaches up to 24 students, ranging from 3 to 21 years old, and it depends on donations and fundraising for the bulk of its operational costs. Though it does get limited support from the state, parents often find themselves having to raise from $800,000 to $1 million a year just to keep the doors open. This allows for a one-to-one teacher-student ratio, which is all but necessary for severely autistic children trying to make strides, said Joel Levine, whose son, Jamie, attends the school.
Twenty-one children currently attend the school, he said, and the state will provide for only a small portion of the teachers and aides necessary. "If the state gives us, say, eight teachers, nothing is accomplished," he said. "They're basically going to have to be babysitters."
As for Resnick, Levine said he is forever grateful. After attending Ascent for six years, Jamie, 11, has made significant strides, learning how to tie his shoes and grasping some basic personal hygiene. And funding, especially recently, has been a challenge.
"Our numbers are down, and it's been harder every year to have to go to the same well," Levine said. "Justin has been a godsend."
It's a personal investment
When Jennifer Zwilling goes to the store, she makes sure the Doritos bags are facing right side out. Face of the Youth Ambassador Program or not, few people want their likenesses staring back at them while grocery shopping.
As the winner of the BRICK Award, a national honor bestowed to 12 teens by Do Something, a nonprofit that focuses on youth in community service, Zwilling has had her face stamped on the back of Doritos bags from coast to coast. The chip-maker sponsors the awards.
Her current wish, she said, is for the new winners to be announced and a new face to be printed.
Not that she isn't grateful. Any positive exposure for the Tourette Syndrome Association is a good thing, and she's certainly done her part. Recently, Zwilling took a trip to Washington, D.C., and spent three days training 18 teens on how to deliver the association's message to schools from New York City to New Zealand. Currently, 15 states and four countries have been visited by youth ambassadors, including England, Canada and South Africa. She's also helped raise $100,000 to fund the seminar, one of the program's biggest accomplishments.
The big project, though, had grass-roots beginnings. Zwilling was diagnosed with Tourette at age 7 and spent the first few years being misunderstood by classmates and teachers. Five years after the diagnosis, she approached Judit Ungar, president of the Long Island chapter of the TSA, with the idea for the program. It was a big step: Zwilling was active with the association and often spoke candidly with classmates, but she was intimidated by the idea of increased publicity.
"I remember The New York Times did an article, and the reporter asked me, 'How did you get involved?' and I didn't want to say I had Tourette's," Zwilling said. "I told her I had a relative who had it."
Ungar recalled Zwilling's coming in with the idea, and although Zwilling may have been hesitant, Ungar saw nothing but fearlessness. "She's not afraid to talk to anyone or ask questions," Ungar said. "I was very impressed [that she was doing this] at the age of 12. I think children when encouraged are really people that you should listen to. They cut to the core of the matter."
Zwilling created a curriculum and soon began traveling from school to school, sometimes out of the country, to educate students. She's made presentations to more than 50 schools and has trained 100 ambassadors.
She's gone down to Washington to lobby six or seven times for Tourette-related bills. Two years ago, she helped seal a victory with the inclusion of Tourette syndrome in the Individuals with Disabilities Education Act, which means that students with the disorder can get special services, like periodic breaks or seating in front of the room. She also lobbied for the Genetic Information Nondiscrimination Act, passed this April, which bans genetic discrimination in health insurance and employment.
Zwilling, who will be attending Duke University on a full ride as a Robertson scholar, will remain active with the TSA, but she said she'll assume more of an administrative role once she's in college.
"It's the most exciting thing," Zwilling said. The seminar "really took the program to the next level ... It's so great knowing that I'll have such amazing people reporting in to me."
Whatever she does, she'll have a cheerleader in Ungar.
"I can see her as the first woman president," Ungar said. "She really has no inhibitions, and she can talk to anyone. She's already a change agent, and she'll be able to touch people and do things."
In that, Resnick and Zwilling are similar. He too, has mustered up a considerable fan base in his philanthropic work.
Doctors reversed their diagnosis this year on Resnick's cousin , which is extremely rare, but Resnick plans to continue the event in the future. Shamow remains flabbergasted at his concern.
"To have someone that's not even related to autism do this," she began, trailing off. "Why do people like that do what they do? He's extraordinary."
Copyright © 2008, Newsday Inc.
Newsday.com
2008 Graduation Issue
In a class of their own
BY LAURA ALBANESE
lilife@newsday.com
Jennifer Zwilling stands in front of a classroom packed to the brim with eagle-eyed elementary school students and asks the one thing that would terrify most teenagers to know: "Do you see anything that maybe I'm doing that looks a little different?"
The hands shoot up in a flurry, and the answers come in almost just as fast: You're blinking your eyes, you twitch your nose, you move your leg sometimes. Zwilling, 16 years old, takes it in stride and continues her lesson: People with Tourette syndrome, she explains throughout, are just like you. They can stand in front of a classroom and have a conversation; they go to school, have friends and, she adds as a caveat, are not contagious.
Zwilling, though, is unlike most people, but not because of any disorder. Her tics -- and they are seldom -- would likely be closer to undetectable if someone didn't know to look. Hiding her condition, she admitted, was an attractive prospect when she was about to hit her teen years, but instead, Zwilling, now 18, chose the path of disclosure.
She didn't do it halfway, either. The video of Zwilling teaching the class is available on the Web -- meant as a teaching tool for speakers in her Tourette Syndrome Youth Ambassador program. Zwilling, who was 12 when she approached the Tourette Syndrome Association with her idea of peers educating peers, has seen the program begin to flower into a multinational initiative to teach understanding and awareness in schools.
And Zwilling, now a senior at Jericho High School, isn't alone in her achievements or her initiative. Her classmate Justin Resnick has had a different approach and a different cause, but similar success.
The benefits of basketball
Where Zwilling went global, Resnick was intent on focusing on the local. After his cousin was diagnosed with autism a year and a half ago before reaching the age of 2, Resnick, who had previously looked after two autistic children as a camp counselor at Miss Debbie's Work of Heart in South Huntington, sprang into action. Lending his services to Autism Speaks, the nation's leading autism-related nonprofit, was the most obvious choice, he said, but not the one he was most comfortable with.
"Justin said, 'You know, I feel like with these big things I'm not going to make a difference,'" said Peter Resnick, Justin's father.
"I wasn't going to see the effect," Justin added.
His mission brought him to Google, and Google brought him to Ascent: A School for Individuals with Autism, a private school in Deer Park that had for years scrambled for cash just to keep its doors open. In a coincidence, the president, Al Eskanazy, had been a former associate of
Peter Resnick, and soon Justin, Peter and his wife, Lauren, a speech pathologist who has worked extensively with autistic children, made the trip to Ascent.
What Justin Resnick saw there would prove to motivate him for months to come.
"The children Justin had seen in the camp were higher functioning," said Lauren Resnick, who ran the camp as part of Up Wee Grow, which specializes in speech therapy and special education. "These were children that weren't really speaking. They're not even able to put their clothes on or brush their teeth."
Added Justin: "I literally don't think I spoke the entire time that I was there. It was unbelievable. After that, I was like, 'This is what we have to raise the money for.' It was obvious."
And Resnick, an Emory University-bound varsity basketball player, had just the thing. He would convince the school to hold a charity basketball event, find sponsors, make up fliers and charge admission. It would be held at Jericho's four pristine basketball courts, and all the money would go to Ascent. It was a lofty goal, to be sure, and the technical and legal quandaries gave the school pause, but Resnick was ready for the challenge.
He made a PowerPoint presentation, petitioned the administration and started a committee to organize the event. Jericho, though, remained hesitant. There was the issue of liability and timing. Resnick countered: Roslyn High School was interested, and he could take the event elsewhere if necessary. Jericho finally agreed, and nearly eight months after the original idea, "Ally-Oop for Autism" was on.
The first event, held on April 21, 2007, raised $101,000. By then, Jericho and Roslyn were hugely enthusiastic and supportive. The same event was held a year later on March 29 with both schools on board. It raised about $108,000.
"We had no idea" that it would be that successful, said Dr. Nancy Shamow, Ascent's executive director. "We were all amazed. It was wonderful."
The Ascent school teaches up to 24 students, ranging from 3 to 21 years old, and it depends on donations and fundraising for the bulk of its operational costs. Though it does get limited support from the state, parents often find themselves having to raise from $800,000 to $1 million a year just to keep the doors open. This allows for a one-to-one teacher-student ratio, which is all but necessary for severely autistic children trying to make strides, said Joel Levine, whose son, Jamie, attends the school.
Twenty-one children currently attend the school, he said, and the state will provide for only a small portion of the teachers and aides necessary. "If the state gives us, say, eight teachers, nothing is accomplished," he said. "They're basically going to have to be babysitters."
As for Resnick, Levine said he is forever grateful. After attending Ascent for six years, Jamie, 11, has made significant strides, learning how to tie his shoes and grasping some basic personal hygiene. And funding, especially recently, has been a challenge.
"Our numbers are down, and it's been harder every year to have to go to the same well," Levine said. "Justin has been a godsend."
It's a personal investment
When Jennifer Zwilling goes to the store, she makes sure the Doritos bags are facing right side out. Face of the Youth Ambassador Program or not, few people want their likenesses staring back at them while grocery shopping.
As the winner of the BRICK Award, a national honor bestowed to 12 teens by Do Something, a nonprofit that focuses on youth in community service, Zwilling has had her face stamped on the back of Doritos bags from coast to coast. The chip-maker sponsors the awards.
Her current wish, she said, is for the new winners to be announced and a new face to be printed.
Not that she isn't grateful. Any positive exposure for the Tourette Syndrome Association is a good thing, and she's certainly done her part. Recently, Zwilling took a trip to Washington, D.C., and spent three days training 18 teens on how to deliver the association's message to schools from New York City to New Zealand. Currently, 15 states and four countries have been visited by youth ambassadors, including England, Canada and South Africa. She's also helped raise $100,000 to fund the seminar, one of the program's biggest accomplishments.
The big project, though, had grass-roots beginnings. Zwilling was diagnosed with Tourette at age 7 and spent the first few years being misunderstood by classmates and teachers. Five years after the diagnosis, she approached Judit Ungar, president of the Long Island chapter of the TSA, with the idea for the program. It was a big step: Zwilling was active with the association and often spoke candidly with classmates, but she was intimidated by the idea of increased publicity.
"I remember The New York Times did an article, and the reporter asked me, 'How did you get involved?' and I didn't want to say I had Tourette's," Zwilling said. "I told her I had a relative who had it."
Ungar recalled Zwilling's coming in with the idea, and although Zwilling may have been hesitant, Ungar saw nothing but fearlessness. "She's not afraid to talk to anyone or ask questions," Ungar said. "I was very impressed [that she was doing this] at the age of 12. I think children when encouraged are really people that you should listen to. They cut to the core of the matter."
Zwilling created a curriculum and soon began traveling from school to school, sometimes out of the country, to educate students. She's made presentations to more than 50 schools and has trained 100 ambassadors.
She's gone down to Washington to lobby six or seven times for Tourette-related bills. Two years ago, she helped seal a victory with the inclusion of Tourette syndrome in the Individuals with Disabilities Education Act, which means that students with the disorder can get special services, like periodic breaks or seating in front of the room. She also lobbied for the Genetic Information Nondiscrimination Act, passed this April, which bans genetic discrimination in health insurance and employment.
Zwilling, who will be attending Duke University on a full ride as a Robertson scholar, will remain active with the TSA, but she said she'll assume more of an administrative role once she's in college.
"It's the most exciting thing," Zwilling said. The seminar "really took the program to the next level ... It's so great knowing that I'll have such amazing people reporting in to me."
Whatever she does, she'll have a cheerleader in Ungar.
"I can see her as the first woman president," Ungar said. "She really has no inhibitions, and she can talk to anyone. She's already a change agent, and she'll be able to touch people and do things."
In that, Resnick and Zwilling are similar. He too, has mustered up a considerable fan base in his philanthropic work.
Doctors reversed their diagnosis this year on Resnick's cousin , which is extremely rare, but Resnick plans to continue the event in the future. Shamow remains flabbergasted at his concern.
"To have someone that's not even related to autism do this," she began, trailing off. "Why do people like that do what they do? He's extraordinary."
Copyright © 2008, Newsday Inc.
Why Youngsters With Autistic Spectrum Disorders Remain Underrepresented
Why Youngsters With Autistic Spectrum Disorders Remain Underrepresented
in Special Education
By Safran, Stephen P
Although numerous investigations have examined the prevalence of
autistic spectrum disorders (ASD) in the general population, have
special education identification rates of autism kept pace? From the
1992-1993 to 2001-2002 school years, U.S. Department of Education data
indicate an increase from 15,580 to 97,904 students with autism, an
expansion of 528% and an annual average growth of 22.69%. The number of
students with autism per 10,000 public school enrollees has
correspondingly increased from 3.64 to 20.53 during this period. Despite
this expansion, there remains a substantial gap between students
identified with autism under the Individuals With Disabilities Education
Act and current prevalence estimates of ASD, in large part due to
underidentification of youngsters on the higher functioning end of the
spectrum. Keywords: autism; autistic spectrum disorders; identification;
special education
In recent years, there has been a dramatic increase in the number of
individuals clinically or medically diagnosed with autism and related
conditions, often referred to as autistic spectrum disorders (ASD) or
pervasive developmental disorders (PDD; Charman, 2002; Fombonne, 2003b).
Although explanations of this estimated threefold to fourfold increase
over the past 30 years (Fombonne, 2003b) are preliminary, changes in
diagnostic criteria; heightened awareness among the public, parents, and
professionals; recognition that ASD can be dual-diagnosed with other
conditions; as well as enhanced service access are often cited (Wing &
Potter, 2002). Whereas numerous studies investigate the prevalence of
ASD in the general population (Croen, Grether, Hoogstrate, & Selvin,
2002; Fombonne, 2003a), there has been scant attention concerning the
number of students with autism declared eligible for special education
services (Sturmey & James, 2001). (In this article, ASD or PDD is used
as the broader medical/clinical term, whereas autism refers to the
disability category under the Individuals With Disabilities Education
Act [IDEA].) Furthermore, whereas the prevalence rate of ASD in the
general population has been dramatically expanding, have identification
rates kept pace in the public schools?
To address this issue, this article examines trends in the number of
students identified with autism since the U.S. Department of Education
first required states to report these data for school year 1992-1993.
What has been the rate of increase in the number of students identified?
How do current prevalence estimates of ASD in the general population
compare with special education classification rates of autism? To what
extent are pupils with ASD potentially being underidentified for special
education services under the category of autism?
Contrasting Clinical Diagnosis and Special Educational Identification
The initial step in identifying any clinical or special education
population involves defining the disorder or disability. The concept of
autism has undergone a significant transformation since Kanner's seminal
1943 paper (Tidmarsh & Volkmar, 2003). Earlier considered a rare
condition almost exclusively associated with mental retardation,
research during the late 1980s and the 1990s modified this view (Wing &
Potter, 2002). Within the clinical and research communities, as the
notion of a "spectrum" of autistic disorders became more accepted,
studies on the prevalence of ASD began to generate substantially larger
numbers (Tidmarsh & Volkmar, 2003; Wing & Potter, 2002).
The educational definition of autism under IDEA (Individuals With
Disabilities Act Regulations, 1999) has both similarities and
differences when compared with the Diagnostic and Statistical Manual of
Mental Disorders-Fourth Edition, Text Revision (DSM-IV-TR; American
Psychiatric Association, 2000):
Autism means a developmental disability significantly affecting verbal
and nonverbal communication and social interaction, generally evident
before age 3, that adversely affects a child's educational performance.
Other characteristics often associated with autism are in repetitive
activities and stereotyped movements, resistance to environmental change
or change in daily routines, and unusual responses to sensory
experiences. The term does not apply if a child's educational
performance is adversely affected primarily because the child has an
emotional disturbance, as defined by IDEA criterion. A child who
manifests the characteristics of "autism" after age three could be
diagnosed as having "autism" if the criteria in the preceding paragraph
are met. (Individuals With Disabilities Act Regulations, 1999)
In contrasting the educational and clinical definitions, Dahl (2003)
emphasized that both include deficits in social interaction, in addition
to verbal and nonverbal communication. The IDEA definition, however,
requires that these characteristics must have a negative impact on
educational performance. Moreover, whereas onset can be expected by age
3, this does not preclude diagnosis or development of autistic
tendencies at a later age. For example, research hi the United Kingdom
indicates that children with Asperger syndrome are on the average
identified at a later age (11.13) compared with youngsters with autistic
disorder (5.49; Howlin & Asgharian, 1999). Therefore, youngsters on the
higher functioning end of the spectrum, whose symptoms often are masked
during early childhood (Safran, 2005), can be identified for special
education services at an older age under the category of autism.
The clinician and special educator do not use the same diagnostic or
identification criteria (Dahl, 2003). Overall, the IDEA definition of
autism is considered broad and flexible enough to include students who
exhibit a range of behaviors that are included within all ASD subtypes
(Fogt, Miller, & Zirkel, 2003; Shriver, Alien, & Mathews, 1999).
However, many individuals may not receive both an educational and
clinical diagnosis. For instance, a student can be found eligible for
special education services without a clinical diagnosis of any ASD
subtype, or a clinically diagnosed youngster may not receive special
education services. Furthermore, a child with a clinical diagnosis of
any ASD condition can be identified under other special education
categories, often mental retardation or other health impaired (Dahl,
2003). However, the actual number of children with ASD receiving special
education services under all categories, including autism, has yet to be
systematically examined (see YearginAllsopp et al. [2003] and Bertrand
et al. [2001] for preliminary data). Furthermore, although the frequency
of IDEA due process hearings and legal decisions encompassing autism
have increased, only 13 of the 290 (4.5%) identified by Fogt et al.
(2003) involved differences over eligibility. This evidence suggests
that the educational definition of autism is operationally acceptable to
both the legal and advocacy communities.
Prevalence Estimates of Autistic Spectrum Disorders
What is the prevalence of children with ASD? Whereas this appears to be
a straightforward question, an accurate answer challenges researchers
and epidemiologists throughout the world (Baker, 2002; Chakrabati &
Fombonne, 2001; Scott, Baron-Cohen, Bolton, & Brayne, 2002). Differences
in prevalence estimates across studies can result from methodological
variability, including differences in definition, geographic area,
and/or strategies used to identify/ diagnose individuals (Fombonne,
2003a). In the United States there have been three widely cited studies
of the prevalence of ASD: the California Developmental Services
investigation (California Department of Developmental Disabilities,
1999; Croen, Grether, Hoogstrate, et al., 2002; Croen, Grether, &
Selvin, 2002); the Centers for Disease Control and Prevention's (CDC's)
Atlanta, Georgia, examination (Yeargin-Allsopp et al., 2003), and the
CDC's Brick Township, New Jersey, inquiry (Bertrand et al., 2001). Each
of these investigations, however, used widely varying methodological
approaches, and the accuracy of their results has been questioned
(Fombonne, 2003a, 2003b).
Arguably the most current and accurate prevalence estimates of combined
ASDs can be derived from Fombonne's (2003a) review of epideniiological
studies. Analyzing international research, he suggested a conservative
estimate of 27.5 per 10,000 but supported a more realistic number of
60.0 per 10,000, a figure corroborated by Charman (2002). Based on U.S.
census data from 2000, and his conservative estimate, Fombonne (2003a)
presented his approximation for the number of individuals under 20 with
all subtypes of ASD. To expand on his figures, I also include in Table 1
his higher rate of 60.0 per 10,000. According to these estimates, there
are between 221,301 and 482,840 individuals with all types of ASD under
the age of 20 based on year 2000 census data.
Examining Special Education Identification Trends
To what degree are youngsters with ASD potentially underrepresented in
special education under the category of autism compared with current
prevalence estimates? To address this question, my first step was to
identify trends related to the number of students identified with autism
under IDEA. These data are based on annual reports of the implementation
of the Individuals With Disabilities Education Improvement Act
(previously IDEA and PL 94- 142), beginning with the 1991-1992 school
year (U.S. Department of Education, 1992) until the most recently
released head counts for the 2001-2002 school year (U.S. Department of
Education, 2002). Statistics were collected using electronic versions of
these reports starting in 1995, with earlier hardcopy editions utilized
between 1992 (U.S. Department of Education, 1992) and 1994. By law, all
states are required to yearly submit the number of students identified
by special education category. Although autism identification rates were
first collected in 1991-1992, required reporting by the states began in
1992-1993 (U.S. Department of Education, 2002). As a result, only
figures starting from 1992-1993 are reported. In addition, the most
recent report available (U.S. Department of Education, 2002) also
incorporates retrospective identification data derived from previous
editions. In instances where a discrepancy exists between earlier
reported figures and those most recently released, more recent numbers
are included. Enrollment statistics pertaining to the entire public
school population were retrieved from Department of Education online
sources rounded to the nearest thousand (National Center for Education
Statistics, 2004). * How many students have been identified under the
category of autism under IDEA for each school year between 1992-1993 and
2001-2002? What has been the annual rate of increase?
The number of students ages 3 to 22 identified with autism reported by
the federal government has increased from 15,580 in 1992- 1993 to 97,904
in 2001-2002, an increase of some 528% (see Figure 1). Annual increases
from 1993-1994 to 2001-2002 varied from a low of 18.22% in 1996-1997 to
a high of 27.15% in 1995-1996, with an average annual increase of 22.69%
(see Figure 2).
* What percentage of all students with disabilities under IDEA have been
identified with autism between 1992-1993 and 2001-2002?
To analyze the growth of the number of students with autism relative to
all pupils with disabilities, percentages were calculated. As
illustrated in Figure 3, this number has grown each successive year,
from a low of 0.34% in 1992-1993 to a high of 1.66% in 2001-2002.
* What has been the rate of students identified with autism per 10,000
students enrolled in public schools between 1992-1993 and 2001-2002? How
does this compare with current prevalence estimates of ASD in the
general population?
To make a more meaningful comparison between children identified with
autism in the public schools and prevalence estimates derived from
epidemiological studies, the number of students with autism was compared
with total national public school enrollment. The number of students
varied from a low of 3.64 per 10,000 in 1992-1993 to a high of 20.53 in
2001-2002 (see Figure 4). This latter figure, though representing a
substantial growth rate, remains approximately 6.97 per 10,000 below
Fombonne's (2003a) conservative estimate of 27.5 per 10,000, or
approximately 33,227 students based on a total public school enrollment
of 47,672,000 for Fall 2001 (National Center for Education Statistics,
2004) . Furthermore, the IDEA figures are approximately 39.47 per 10,000
below his more realistic number of 60.0 per 10,000, or an estimated
188,161 students.
* What were the number of students identified with autism at each age
between 3 and 22 during the most recent school year?
As illustrated in Figure 5, the largest number of students identified
with autism under IDEA per age group are 9-year-olds (n = 11,641),
followed by ages 8 (n = 11,379) and 7 (n = 11,121). As can be perused
from these numbers, there appears to be a "plateau" from ages 6 to 9,
followed by a consistent decrease starting at age 10.
Why Youngsters With Autism Remain Underidentified in Special Education
Whereas prevalence estimates of individuals with ASD has dramatically
expanded (Charman, 2002; Fombonne, 2003a), has the number of students
identified with autism under IDEA kept pace? On the surface, comparing
1992-1993 to 2001-2002 data from the U.S. Department of Education (1992,
2002) reflect several noteworthy accomplishments: a 528% increase in the
number of students identified (from 15,580 to 97,904), an expansion in
the student classification rate (from 3.64 to 20.53 per 10,000 public
school pupils), plus an average annual growth rate of 22.69%. Despite
these extensive efforts, it is my view that youngsters with ASD remain
underrepresented in special education.
Whereas estimating special education identification rates is a haphazard
business, whole population prevalence estimates can provide insights
into future classification needs. If the number of students identified
with autism is equivalent to current ASD prevalence estimates, somewhere
between 27.5 and 60.0 per 10,000 (Bertrand et al., 2001; Fombonne,
2003a), and we combine this with a Fall 2001 public school enrollment of
47,672,000 (National Center for Education Statistics, 2004), the number
of students with autism can be projected at between 131,098 and 286,032,
or a required increase of between 34% to 192% from the 2001-2002
identification count of 97,904. If, and this is a big if, prevalence
estimates of ASD can serve as a general guide for future growth, there
potentially remain tens of thousands of public school students yet to be
identified with autism according to the most recent federal figures
available at time of writing. If a near-term annual growth rate of 20%
is maintained, plus applying Fombonne's (2003a) best estimate of 60.0
per 10,000 individuals (286,032 students with autism), this
identification rate would be reached during the 2007- 2008 school year.
Realistically, a 20%-plus annual growth rate cannot be sustained
indefinitely as funding pressures spiral due to budget restraints.
Whereas I believe that there is a strong case for identifying greater
numbers of students with autism, this position is arguable for several
reasons. First, although actual figures are unknown, many children with
ASD are identified in other special education disability categories such
as mental retardation or other health impaired (Bertrand et al., 2001;
Yeargin-Allsopp et al., 2003), thereby reducing the number classified
with autism. second, prevalence estimates derived from epidemiological
research are just that, estimates of population size. These figures
differ from "administrative" head counts such as special education
identification numbers where funding may be the dominant factor in
determining population size. Third, the diagnostic criteria for all
subtypes of ASD and the special education definition of autism, though
overlapping, differ and will invariably result in different eligibility
and diagnostic decisions.
Where on the autistic spectrum can future increases in identification be
projected to emanate from? Although exact numbers are currently
unavailable, it is probable that professionals in early intervention and
special education have already identified the vast majority of children
on the lower end of the spectrum. These youngsters are diagnosed at an
earlier age, and their symptoms are more visible to families and
professionals (Howlin & Asgharian, 1999). As investigations in the
United States corroborate (Bertrand et al., 2001 ; Yeargin-Allsopp et
al., 2003), higher functioning youngsters with ASD, such as those
diagnosed with Asperger syndrome, whose symptoms are often more subtle
and may be masked due to average to above-average intellectual
functioning, academic achievement, and language abilities, are either
identified at an later age or not at all (Howlin & Asgharian, 1999;
Safran, 2005). Although progress has been made, there remain many more
youngsters on the higher end who remain unidentified. For these
youngsters, whose social skills deficits, unusual mannerisms, rigidity,
and lack of empathy are often wrongfully interpreted as purposefully
rude and inappropriate, life challenges are no less real (Safran, 2001).
It is with this group of children that future special education
identification resources must be focused.
References
American Psychiatric Association. (2000). Diagnostic and statistical
manual of mental disorders (4th ed., text revision). Washington, DC:
Author.
Baker, H. C. (2002). A comparison of autistic spectrum disorder
referrals 1997 and 1989. Journal of Autism and Developmental Disorders,
32, 121-125.
Bertrand, J., Mars, A., Boyle, C., Bove, F, Yeargin-Allsopp, M., &
Decloufe, P. (2001). Prevalence of autism in a United States population:
The Brick Township New Jersey, investigation. Pediatrics, 108,
1155-1161.
California Department of Developmental Disabilities. (1999). Changes in
the population of persons with autism and pervasive developmental
disorders in California's Developmental Services System: 1987 though
1999. A report to the legislature. Sacramento: California Health and
Human Services Agency.
Chakrabati, S., & Fombonne, E. (2001). Pervasive developmental disorders
in preschool children. Journal of the American Medical Association, 285,
3093-3099.
Charman, T. (2002). The prevalence of autism spectrum disorders: Recent
evidence and future challenges. European Child & Adolescent Psychiatry,
11, 249-256.
Croen, L. A., Grether, J. K., Hoogstrate, J., & Selvin, S. (2002). The
changing prevalence of autism in California. Journal of Autism &
Developmental Disorders, 32, 207-215.
Croen, Lisa A., Grether, J. K., & Selvin, S. (2002). Descriptive
epidemiology of autism in a California population: Who is at risk?
Journal of Autism & Developmental Disorders, 32, 217-224.
Dahl, K. B. (2003). The clinical and educational systems: Differences
and similarities. Focus on Autism and Other Developmental Disabilities,
18, 238-246.
Fogt, J. B., Miller, D. N., & Zirkel, P. A. (2003). Defining autism:
Professional best practices and published case law. Journal of School
Psychology, 41, 201-216. Fombonne, E. (2003a). Epidemiological surveys
of autism and other pervasive developmental disorders: An update.
Journal of Autism & Developmental Disorders, 33, 365-382.
Fombonne, E. (2003b). The prevalence of autism. Journal of the American
Medical Association, 289, 87-89.
Howlin, P., & Asgharian, A. (1999). The diagnosis of autism and Asperger
syndrome: Findings from a survey of 770 families. Developmental Medicine
and Child Neurology, 41, 834-839.
Individuals With Disability Act Regulations. 34 C.F.R. 300.7 (1999).
National Center for Education Statistics. (2004). Digest of education
statistics, 2004. Washington, DC: U.S. Department of Education.
Retrieved September 25, 2006, from http://
www.nces.ed.gov/programs/digest/d04/
Safran, S. P. (2001). Asperger syndrome: The emerging challenge to
special education. Exceptional Children, 67, 151-160.
Safran, S. P. (2005). Diagnosis. In L. J. Baker & L. A. Welkowitz
(Eds.), Asperger's syndrome: Intervening in schools, clinics, and
communities (pp. 43-61). Mahwah, NJ: Lawrence Erlbaum.
Scott, F. J., Baron-Cohen, S., Bolton, P., & Brayne, C. (2002). Brief
report: Prevalence of autism spectrum conditions in children aged 5-11
years in Cambridgeshire, UK. Autism, 6, 231-237.
Shriver, M. D., Alien, K. D., & Mathews, J. R. (1999). Effective
assessment of the shared and unique characteristics of children with
autism. School Psychology Review, 28, 538-558.
Sturmey, P., & James, V. (2001). Administrative prevalence of autism in
the Texas school system. Journal of the American Academy of Child &
Adolescent Psychiatry, 40, 621.
Tidmarsh, L., & Volkmar, F. R. (2003). Diagnosis and epidemiology of
autism spectrum disorders. Canadian Journal of Psychiatry, 48, 517-525.
U.S. Department of Education. (1992). To assure the free appropriate
public education of all handicapped children with disabilities:
Fourteenth annual report to Congress on the implementation of the
Education of All Handicapped Children Act (Public Law 94-142).
Washington, DC: Author.
U.S. Department of Education. (2002). To assure the free appropriate
public education of all children with disabilities: Twenty-fourth annual
report to Congress on the implementation of the Individuals With
Disabilities Act (IDEA). Washington, DC: Author. Retrieved September
26,2006, from http://www.ed.gov/about/reports/ annual/otherplanrpts.html
Wing, L., & Potter, P. (2002). The epidemiology of autistic spectrum
disorders: Is the prevalence rising? Mental Retardation and
Developmental Disabilities Research Review, 8,151-161.
Yeargin-Allsopp, M., Rice, C., Karapurkar, T, Doernberg, N., Boyle, C.,
& Murphy, C. (2003). Prevalence of autism in a US metropolitan area.
Journal of the American Medical Association, 289, 49-55.
Stephen P. Safran
Ohio University, Athens
Author's Note: This research was completed during the author's faculty
leave at Ohio University during academic year 2005-2006. Please address
correspondence to Stephen Safran, PhD, Ohio University, Dept. of Teacher
Education, College of Education, McCracken Hall, Athens, OH 45701;
e-mail: safran@ohio.edu.
Stephen P. Safran, PhD, is a professor of special education at Ohio
University, Athens. He received his PhD at the University of Virginia in
special education. His current research, presentation, and training
interests include school-wide positive behavior supports and autistic
spectrum disorders/Asperger syndrome.
Copyright PRO-ED Journals Mar/Apr 2008
(c) 2008 Remedial and Special Education; RASE. Provided by ProQuest
Information and Learning. All rights Reserved.
Story from REDORBIT NEWS:
http://www.redorbit.com/news/display/?id=1432389
Published: 2008/06/14 03:00:33 CDT
in Special Education
By Safran, Stephen P
Although numerous investigations have examined the prevalence of
autistic spectrum disorders (ASD) in the general population, have
special education identification rates of autism kept pace? From the
1992-1993 to 2001-2002 school years, U.S. Department of Education data
indicate an increase from 15,580 to 97,904 students with autism, an
expansion of 528% and an annual average growth of 22.69%. The number of
students with autism per 10,000 public school enrollees has
correspondingly increased from 3.64 to 20.53 during this period. Despite
this expansion, there remains a substantial gap between students
identified with autism under the Individuals With Disabilities Education
Act and current prevalence estimates of ASD, in large part due to
underidentification of youngsters on the higher functioning end of the
spectrum. Keywords: autism; autistic spectrum disorders; identification;
special education
In recent years, there has been a dramatic increase in the number of
individuals clinically or medically diagnosed with autism and related
conditions, often referred to as autistic spectrum disorders (ASD) or
pervasive developmental disorders (PDD; Charman, 2002; Fombonne, 2003b).
Although explanations of this estimated threefold to fourfold increase
over the past 30 years (Fombonne, 2003b) are preliminary, changes in
diagnostic criteria; heightened awareness among the public, parents, and
professionals; recognition that ASD can be dual-diagnosed with other
conditions; as well as enhanced service access are often cited (Wing &
Potter, 2002). Whereas numerous studies investigate the prevalence of
ASD in the general population (Croen, Grether, Hoogstrate, & Selvin,
2002; Fombonne, 2003a), there has been scant attention concerning the
number of students with autism declared eligible for special education
services (Sturmey & James, 2001). (In this article, ASD or PDD is used
as the broader medical/clinical term, whereas autism refers to the
disability category under the Individuals With Disabilities Education
Act [IDEA].) Furthermore, whereas the prevalence rate of ASD in the
general population has been dramatically expanding, have identification
rates kept pace in the public schools?
To address this issue, this article examines trends in the number of
students identified with autism since the U.S. Department of Education
first required states to report these data for school year 1992-1993.
What has been the rate of increase in the number of students identified?
How do current prevalence estimates of ASD in the general population
compare with special education classification rates of autism? To what
extent are pupils with ASD potentially being underidentified for special
education services under the category of autism?
Contrasting Clinical Diagnosis and Special Educational Identification
The initial step in identifying any clinical or special education
population involves defining the disorder or disability. The concept of
autism has undergone a significant transformation since Kanner's seminal
1943 paper (Tidmarsh & Volkmar, 2003). Earlier considered a rare
condition almost exclusively associated with mental retardation,
research during the late 1980s and the 1990s modified this view (Wing &
Potter, 2002). Within the clinical and research communities, as the
notion of a "spectrum" of autistic disorders became more accepted,
studies on the prevalence of ASD began to generate substantially larger
numbers (Tidmarsh & Volkmar, 2003; Wing & Potter, 2002).
The educational definition of autism under IDEA (Individuals With
Disabilities Act Regulations, 1999) has both similarities and
differences when compared with the Diagnostic and Statistical Manual of
Mental Disorders-Fourth Edition, Text Revision (DSM-IV-TR; American
Psychiatric Association, 2000):
Autism means a developmental disability significantly affecting verbal
and nonverbal communication and social interaction, generally evident
before age 3, that adversely affects a child's educational performance.
Other characteristics often associated with autism are in repetitive
activities and stereotyped movements, resistance to environmental change
or change in daily routines, and unusual responses to sensory
experiences. The term does not apply if a child's educational
performance is adversely affected primarily because the child has an
emotional disturbance, as defined by IDEA criterion. A child who
manifests the characteristics of "autism" after age three could be
diagnosed as having "autism" if the criteria in the preceding paragraph
are met. (Individuals With Disabilities Act Regulations, 1999)
In contrasting the educational and clinical definitions, Dahl (2003)
emphasized that both include deficits in social interaction, in addition
to verbal and nonverbal communication. The IDEA definition, however,
requires that these characteristics must have a negative impact on
educational performance. Moreover, whereas onset can be expected by age
3, this does not preclude diagnosis or development of autistic
tendencies at a later age. For example, research hi the United Kingdom
indicates that children with Asperger syndrome are on the average
identified at a later age (11.13) compared with youngsters with autistic
disorder (5.49; Howlin & Asgharian, 1999). Therefore, youngsters on the
higher functioning end of the spectrum, whose symptoms often are masked
during early childhood (Safran, 2005), can be identified for special
education services at an older age under the category of autism.
The clinician and special educator do not use the same diagnostic or
identification criteria (Dahl, 2003). Overall, the IDEA definition of
autism is considered broad and flexible enough to include students who
exhibit a range of behaviors that are included within all ASD subtypes
(Fogt, Miller, & Zirkel, 2003; Shriver, Alien, & Mathews, 1999).
However, many individuals may not receive both an educational and
clinical diagnosis. For instance, a student can be found eligible for
special education services without a clinical diagnosis of any ASD
subtype, or a clinically diagnosed youngster may not receive special
education services. Furthermore, a child with a clinical diagnosis of
any ASD condition can be identified under other special education
categories, often mental retardation or other health impaired (Dahl,
2003). However, the actual number of children with ASD receiving special
education services under all categories, including autism, has yet to be
systematically examined (see YearginAllsopp et al. [2003] and Bertrand
et al. [2001] for preliminary data). Furthermore, although the frequency
of IDEA due process hearings and legal decisions encompassing autism
have increased, only 13 of the 290 (4.5%) identified by Fogt et al.
(2003) involved differences over eligibility. This evidence suggests
that the educational definition of autism is operationally acceptable to
both the legal and advocacy communities.
Prevalence Estimates of Autistic Spectrum Disorders
What is the prevalence of children with ASD? Whereas this appears to be
a straightforward question, an accurate answer challenges researchers
and epidemiologists throughout the world (Baker, 2002; Chakrabati &
Fombonne, 2001; Scott, Baron-Cohen, Bolton, & Brayne, 2002). Differences
in prevalence estimates across studies can result from methodological
variability, including differences in definition, geographic area,
and/or strategies used to identify/ diagnose individuals (Fombonne,
2003a). In the United States there have been three widely cited studies
of the prevalence of ASD: the California Developmental Services
investigation (California Department of Developmental Disabilities,
1999; Croen, Grether, Hoogstrate, et al., 2002; Croen, Grether, &
Selvin, 2002); the Centers for Disease Control and Prevention's (CDC's)
Atlanta, Georgia, examination (Yeargin-Allsopp et al., 2003), and the
CDC's Brick Township, New Jersey, inquiry (Bertrand et al., 2001). Each
of these investigations, however, used widely varying methodological
approaches, and the accuracy of their results has been questioned
(Fombonne, 2003a, 2003b).
Arguably the most current and accurate prevalence estimates of combined
ASDs can be derived from Fombonne's (2003a) review of epideniiological
studies. Analyzing international research, he suggested a conservative
estimate of 27.5 per 10,000 but supported a more realistic number of
60.0 per 10,000, a figure corroborated by Charman (2002). Based on U.S.
census data from 2000, and his conservative estimate, Fombonne (2003a)
presented his approximation for the number of individuals under 20 with
all subtypes of ASD. To expand on his figures, I also include in Table 1
his higher rate of 60.0 per 10,000. According to these estimates, there
are between 221,301 and 482,840 individuals with all types of ASD under
the age of 20 based on year 2000 census data.
Examining Special Education Identification Trends
To what degree are youngsters with ASD potentially underrepresented in
special education under the category of autism compared with current
prevalence estimates? To address this question, my first step was to
identify trends related to the number of students identified with autism
under IDEA. These data are based on annual reports of the implementation
of the Individuals With Disabilities Education Improvement Act
(previously IDEA and PL 94- 142), beginning with the 1991-1992 school
year (U.S. Department of Education, 1992) until the most recently
released head counts for the 2001-2002 school year (U.S. Department of
Education, 2002). Statistics were collected using electronic versions of
these reports starting in 1995, with earlier hardcopy editions utilized
between 1992 (U.S. Department of Education, 1992) and 1994. By law, all
states are required to yearly submit the number of students identified
by special education category. Although autism identification rates were
first collected in 1991-1992, required reporting by the states began in
1992-1993 (U.S. Department of Education, 2002). As a result, only
figures starting from 1992-1993 are reported. In addition, the most
recent report available (U.S. Department of Education, 2002) also
incorporates retrospective identification data derived from previous
editions. In instances where a discrepancy exists between earlier
reported figures and those most recently released, more recent numbers
are included. Enrollment statistics pertaining to the entire public
school population were retrieved from Department of Education online
sources rounded to the nearest thousand (National Center for Education
Statistics, 2004). * How many students have been identified under the
category of autism under IDEA for each school year between 1992-1993 and
2001-2002? What has been the annual rate of increase?
The number of students ages 3 to 22 identified with autism reported by
the federal government has increased from 15,580 in 1992- 1993 to 97,904
in 2001-2002, an increase of some 528% (see Figure 1). Annual increases
from 1993-1994 to 2001-2002 varied from a low of 18.22% in 1996-1997 to
a high of 27.15% in 1995-1996, with an average annual increase of 22.69%
(see Figure 2).
* What percentage of all students with disabilities under IDEA have been
identified with autism between 1992-1993 and 2001-2002?
To analyze the growth of the number of students with autism relative to
all pupils with disabilities, percentages were calculated. As
illustrated in Figure 3, this number has grown each successive year,
from a low of 0.34% in 1992-1993 to a high of 1.66% in 2001-2002.
* What has been the rate of students identified with autism per 10,000
students enrolled in public schools between 1992-1993 and 2001-2002? How
does this compare with current prevalence estimates of ASD in the
general population?
To make a more meaningful comparison between children identified with
autism in the public schools and prevalence estimates derived from
epidemiological studies, the number of students with autism was compared
with total national public school enrollment. The number of students
varied from a low of 3.64 per 10,000 in 1992-1993 to a high of 20.53 in
2001-2002 (see Figure 4). This latter figure, though representing a
substantial growth rate, remains approximately 6.97 per 10,000 below
Fombonne's (2003a) conservative estimate of 27.5 per 10,000, or
approximately 33,227 students based on a total public school enrollment
of 47,672,000 for Fall 2001 (National Center for Education Statistics,
2004) . Furthermore, the IDEA figures are approximately 39.47 per 10,000
below his more realistic number of 60.0 per 10,000, or an estimated
188,161 students.
* What were the number of students identified with autism at each age
between 3 and 22 during the most recent school year?
As illustrated in Figure 5, the largest number of students identified
with autism under IDEA per age group are 9-year-olds (n = 11,641),
followed by ages 8 (n = 11,379) and 7 (n = 11,121). As can be perused
from these numbers, there appears to be a "plateau" from ages 6 to 9,
followed by a consistent decrease starting at age 10.
Why Youngsters With Autism Remain Underidentified in Special Education
Whereas prevalence estimates of individuals with ASD has dramatically
expanded (Charman, 2002; Fombonne, 2003a), has the number of students
identified with autism under IDEA kept pace? On the surface, comparing
1992-1993 to 2001-2002 data from the U.S. Department of Education (1992,
2002) reflect several noteworthy accomplishments: a 528% increase in the
number of students identified (from 15,580 to 97,904), an expansion in
the student classification rate (from 3.64 to 20.53 per 10,000 public
school pupils), plus an average annual growth rate of 22.69%. Despite
these extensive efforts, it is my view that youngsters with ASD remain
underrepresented in special education.
Whereas estimating special education identification rates is a haphazard
business, whole population prevalence estimates can provide insights
into future classification needs. If the number of students identified
with autism is equivalent to current ASD prevalence estimates, somewhere
between 27.5 and 60.0 per 10,000 (Bertrand et al., 2001; Fombonne,
2003a), and we combine this with a Fall 2001 public school enrollment of
47,672,000 (National Center for Education Statistics, 2004), the number
of students with autism can be projected at between 131,098 and 286,032,
or a required increase of between 34% to 192% from the 2001-2002
identification count of 97,904. If, and this is a big if, prevalence
estimates of ASD can serve as a general guide for future growth, there
potentially remain tens of thousands of public school students yet to be
identified with autism according to the most recent federal figures
available at time of writing. If a near-term annual growth rate of 20%
is maintained, plus applying Fombonne's (2003a) best estimate of 60.0
per 10,000 individuals (286,032 students with autism), this
identification rate would be reached during the 2007- 2008 school year.
Realistically, a 20%-plus annual growth rate cannot be sustained
indefinitely as funding pressures spiral due to budget restraints.
Whereas I believe that there is a strong case for identifying greater
numbers of students with autism, this position is arguable for several
reasons. First, although actual figures are unknown, many children with
ASD are identified in other special education disability categories such
as mental retardation or other health impaired (Bertrand et al., 2001;
Yeargin-Allsopp et al., 2003), thereby reducing the number classified
with autism. second, prevalence estimates derived from epidemiological
research are just that, estimates of population size. These figures
differ from "administrative" head counts such as special education
identification numbers where funding may be the dominant factor in
determining population size. Third, the diagnostic criteria for all
subtypes of ASD and the special education definition of autism, though
overlapping, differ and will invariably result in different eligibility
and diagnostic decisions.
Where on the autistic spectrum can future increases in identification be
projected to emanate from? Although exact numbers are currently
unavailable, it is probable that professionals in early intervention and
special education have already identified the vast majority of children
on the lower end of the spectrum. These youngsters are diagnosed at an
earlier age, and their symptoms are more visible to families and
professionals (Howlin & Asgharian, 1999). As investigations in the
United States corroborate (Bertrand et al., 2001 ; Yeargin-Allsopp et
al., 2003), higher functioning youngsters with ASD, such as those
diagnosed with Asperger syndrome, whose symptoms are often more subtle
and may be masked due to average to above-average intellectual
functioning, academic achievement, and language abilities, are either
identified at an later age or not at all (Howlin & Asgharian, 1999;
Safran, 2005). Although progress has been made, there remain many more
youngsters on the higher end who remain unidentified. For these
youngsters, whose social skills deficits, unusual mannerisms, rigidity,
and lack of empathy are often wrongfully interpreted as purposefully
rude and inappropriate, life challenges are no less real (Safran, 2001).
It is with this group of children that future special education
identification resources must be focused.
References
American Psychiatric Association. (2000). Diagnostic and statistical
manual of mental disorders (4th ed., text revision). Washington, DC:
Author.
Baker, H. C. (2002). A comparison of autistic spectrum disorder
referrals 1997 and 1989. Journal of Autism and Developmental Disorders,
32, 121-125.
Bertrand, J., Mars, A., Boyle, C., Bove, F, Yeargin-Allsopp, M., &
Decloufe, P. (2001). Prevalence of autism in a United States population:
The Brick Township New Jersey, investigation. Pediatrics, 108,
1155-1161.
California Department of Developmental Disabilities. (1999). Changes in
the population of persons with autism and pervasive developmental
disorders in California's Developmental Services System: 1987 though
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Stephen P. Safran
Ohio University, Athens
Author's Note: This research was completed during the author's faculty
leave at Ohio University during academic year 2005-2006. Please address
correspondence to Stephen Safran, PhD, Ohio University, Dept. of Teacher
Education, College of Education, McCracken Hall, Athens, OH 45701;
e-mail: safran@ohio.edu.
Stephen P. Safran, PhD, is a professor of special education at Ohio
University, Athens. He received his PhD at the University of Virginia in
special education. His current research, presentation, and training
interests include school-wide positive behavior supports and autistic
spectrum disorders/Asperger syndrome.
Copyright PRO-ED Journals Mar/Apr 2008
(c) 2008 Remedial and Special Education; RASE. Provided by ProQuest
Information and Learning. All rights Reserved.
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