An Auto-Ethnographic Exploration of Student Self-Advocacy Communication

Within the Individualized Education Program (IEP) Planning Construct

Holly Lane

Queens University of Charlotte

Table of Contents

The Disability        

The (IEP) Problem        

Literature Review        

Legislation        

Communication Aids and Interventions for People with Disabilities        

Student Self-Advocacy        

The Role of Technology in IEP Development        

Transitioning        

Barriers to Student Self-Advocacy        

Methodology        

Theoretical Lens: Social Construction of Reality        

Data Collection        

Results        

Survey        

Documentary        

Reflexivity        

Analysis        

Discussion and Conclusion        

Mainstreaming Self-Advocacy Instruction        

Exploring the Role of Technology in Student Self-Advocacy        

References        

Appendix A        

Appendix B        

An Auto-Ethnographic Exploration of Student Self-Advocacy Communication

Within the Individualized Education Program (IEP) Planning Construct

        It’s time for dinner and Nathan is still doing his homework.  Four hours have passed since he first nestled into his space at the dining table amidst an arrangement of his textbooks, folders, and loose paper.  When I tell him to clear off his things he sighs with red cheeks.  His eyes dampen.

        I tell him he doesn’t have any more time to work—that I’ll message his teachers tomorrow to say he’d tried his hardest.  It’s an autopilot speech—I give it several times a week—and Nathan knows it.

        I search his eyes to intuit his silent question: Why isn’t his hardest working, when I assured him it would?  This question, I imagine, is the reason he cries when, night after night, he is reminded that his time is up and, in spite of his best efforts, he has fallen farther behind in his schoolwork.

        There’s a lot I have to imagine about when it comes to Nathan’s thoughts and feelings, because he provides very little direct (i.e. assertive, aimed, unambiguous, and audible) feedback.  If Nathan, as a baby, wanted to express something, he needed only look me in the eyes to do it.  One memory stands out in my mind: Nathan crawled to where I was seated at the kitchen table, pulled himself up on my leg, and looked me directly in the eye without making a sound.  I unthinkingly pulled his bottle of apple juice from the refrigerator and handed it to him.  He nodded affirmatively, put his “bobba” in his mouth, and crawled off.  Although we’d certainly engaged in nearly identical exchanges numerous times before, this is the first instance in which I can recall consciously registering our nonverbal style of communication.  It was as if I’d watched the scene as an outsider and in wonderment realized, “so that’s what we’re doing!”  Thereafter when people commented on how quiet Nathan was as a baby and toddler, I told them—in feigned jest—that Nathan and I communicated telepathically.

        When Nathan was about eight months old, I reentered the workforce as an administrative assistant and found a childcare provider up the road from my office.  “Susan” had a clean, spacious home and a garage that she’d converted into a playroom.  Approximately six toddlers inhabited this space on a daily basis.  Sensing I was nervous about leaving Nathan for the entire day (up to that point, I’d been a stay at home mom), Susan encouraged me to stop in on my lunch breaks, and whenever else I felt like it.  

        It was during my daily visits that I saw just how “different” Nathan was from his peers.  While they babbled experimentally, poked and pulled at each other, and broke crayons in feverish attempts to depict letters, numbers, pets, and family members on paper, Nathan sat quietly, watching—always watching, never participating.  Susan asked if I’d ever had Nathan’s hearing tested.  I told her that his hearing checked out.  When Susan remarked on how Nathan refused to eat at lunchtime, I squeezed his chubby legs.  Susan showed me doodles the other kids had drawn, next to Nathan’s—a seemingly blank page—and I said, “But the page isn’t blank.  Nathan just pointed to this tiny dot—can you see it?—pointed to it and smiled at me!  Just now, while you were talking about the blank page!  Did you see?”  

        She didn’t see.  Or maybe she wouldn’t see.  I’ll never know and it doesn’t matter.  What I do know is that Nathan exhibited no interest in making her see.

The Disability

        At the age of five, Nathan was diagnosed with Duchenne Muscular Dystrophy (DMD).  DMD is a progressive neurological disorder in which the body inadequately produces the dystrophin protein (and its isoforms), which is necessary to muscle tissue regeneration.  Resultantly, DMD is characterized by constant and perpetual muscle atrophy.  Because dystrophin isoforms are also necessary to proper brain function, a lack thereof in DMD patients often presents as a specific cluster of cognitive deficits, most markedly in Verbal IQ and immediate memory skills (Hinton, Fee, Goldstein, & DeVivo, 2007).  Research also evidences that children with DMD, although comparatively “normal” in intellectual ability, consistently score lower than their “normally developing” peers in tests of learning, memory, and executive functions (Wicksell, Kihlgren, Melin, & Eeg-Olofsson, 2004).  

        While the physical affects of DMD’s trademark muscle wasting may be obvious, the cognitive affects are less so.  As Nathan’s mother, I registered his cognitive dysfunction long before his DMD diagnosis, but it wasn’t until I placed him in the public school system that I realized the gravity of the situation: My son, who relied on me for his communication, would be spending the majority of his waking hours in a strange place, surrounded by strangers.  This proved distinctively problematic within the context of academic planning, which, for Nathan (and other qualified students with disabilities), centers on an Individualized Education Program (IEP), as mandated by the Individuals with Disabilities Education Act of 2007.  

The (IEP) Problem

        An IEP is an Individualized Education Program.  Most public school students with a disability have one.  The purpose of an IEP is to outline all the accommodations a student might need in order to be successful academically.  These accommodations might include anything from modifying homework assignments to physical therapy to technology that may be used for communication.

        IEPs are lengthy and complex documents.  They most often contain wording that is unfamiliar to the very population they are meant to serve.  Parents, teachers, and school administrators may spend several hours in an IEP meeting just trying to list a student’s needs accurately and effectively, only to find that the IEP does not “work” to the end of meeting students’ goals.

        Scientific research shows that students who participate in the development of their own IEPs experience greater academic success and satisfaction.  And therein lies the IEP problem: Student self-advocacy is essential to IEP-centered academic achievement, yet the IEP development process is not readily accessible to students with disabilities.

        Now almost sixteen years old, Nathan still mostly communicates in nonverbal subtleties.  This is what I mean: An eye roll might signify embarrassment or amusement; he’ll catch your eye mid-arc to let you know which one—but you have to catch it—you have to know to look for it.  Slightly turned-up corners of the mouth may mean approval or mischievousness.  A shrug often means he doesn’t know what to say (or, even more often, that he doesn’t want to say it).  A squint of the eyes with a low, sideward glance is a signal that he doesn’t approve of what he’s hearing: He either disagrees, disbelieves, or dislikes—which, again, he’ll let on with his eyes.  He’s good at his type of communication—but has few interpreters.  The problem with this is self-evident: Though I’ve readily shifted my logic-leaning brain more toward intuition in order to better understand Nathan, I can’t expect the virtual strangers that comprise Nathan’s academic team to intuit his wants and needs as I’ve been compelled to.  And I can’t accompany Nathan to school every day, or mediate all his interactions with his classmates and teachers, or babysit his academic success.  It’s in Nathan’s best interest that he become oriented to self-advocacy.

        Nate shoots me the eye-squint side-glance as I explain to him how his academic difficulties will only be worse next year—his first year of high school—unless we ready ourselves for the transition starting now.  He says, “What if I decide not to do your thing?  Is that okay?”

        “You mean, can you back out of doing the documentary?  At this point?  After our long meeting about commitment?

        He has no apparent reservation in backing out of my documentary—starring him—if it means he won’t have to involve himself in his own transition.  At the same time he’s asking my permission. I work to contain my laughter, at the same time taking note that Nathan would prefer to have me take care of his Individualized Education Program (IEP) for him.

        Before I can ask again that he verify his petition to get out of his commitment, he says, “Yeah, that’s what I mean.  Can I just not do it?”

        “That’s not an option,” I say.

        “Okay then,” he says.

        He indicates with a solid look into my eyes that he is ready for the challenge.  I’m filled with confidence in my son.  At the same time, I foresee great challenges ahead.  My research question comes to me at night, when I should be sleeping: How might students learn and employ self-advocacy communication skills that empower them toward active and effective involvement in the development of their own Individualized Education Programs (IEPs)?

Literature Review

        Although Nathan’s IEP had been over ten years in the making, once I sat down to my research question, I realized just how little I knew about approaching the problem.  I didn’t know what I was looking for, and so I looked through everything I could find that might bring me closer to an understanding of what it would take to help my son learn, and grow comfortable in, self-advocating expression.

Legislation

        All of Nathan’s special education needs, accommodations, and goals are outlined in his Individualized Education Program (IEP).  Mandated by United States Individuals with Disabilities Education Act (IDEA) of 1997, IEP planning is a collaborative and dynamic process by which families, students, teachers, and other related school faculty develop a strategy for meeting a disabled student’s needs within the public school system.  According to the IDEA, educational institutions (and their employees) must consider providing assistive technologies (AT) for every IEP-qualified student (IDEA, 1997).  Section 300.5 of the IDEA defines an “assistive technology device” as “any item, piece of equipment, or product system . . . that is used to increase, maintain, or improve the functional capabilities of a child with a disability” (20 U.S.C. 1401 (1)).   Section 300.6 of the IDEA defines “assistive technology services as “any service that directly assists a child with a disability in the selection, acquisition, or use of an assistive technology device” (20 U.S.C. 1401 (2)).  These are important definitions to keep in mind when navigating the IEP planning process.

Communication Aids and Interventions for People with Disabilities        

        Adolescent narratives.  If students with disabilities are to succeed in an academic setting, they must develop both written and oral language skills (Montgomery & Kahn, 2003).  Goodin and Meholin (1990) found that adolescent narratives (“student stories”) are effective tools for structuring Speech Language Pathology (SLP) intervention programs.  Montgomery and Kahn (2003) propose a “scaffolded writing process” for the development of adolescent narratives.  Their research encompasses case studies of four students, all with in-place IEPs, who at the study’s completion exhibited increased success in meeting and expanding their IEP goals.

        Assistive Technologies.  The Individuals with Disabilities Education Act (IDEA) of 1997 defines an assistive technology device as “any item, piece of equipment, or product system . . . that is used to increase, maintain, or improve the functional capabilities of children with disabilities” (IDEA, 1997).  Assistive technologies include “communication boards and wallets,” “electronic communication devices,” “mobility devices (power wheelchairs),” “expanded or adapted keyboards, touch windows, and speed recognitions systems,” and “magnification devices and computer screen reading adaptations” (Parette & McMahan, 2007), among others.  Additionally, an assistive technology service is “any service that directly assists an individual with a disability in the selection, acquisition, or use of an assistive technology device” (Parette & McMahan, 2007).  

        According the Parette and McMahon (2007), it is the obligation of IEP team members to determine which assistive technology options might best be suited to a child’s special education plan.  Therefore, when provided the self-advocating student’s objective to communicate about and through technology during the IEP development process, it becomes necessary to consider the role of assistive technologies in student self-advocacy, both in terms of the IEP development process and the nomenclature of the IEP document, itself.  Parette and McMahan (2007) provide guidance on which questions (as posed by school faculty, during IEP development meetings) might be best suited to achieving the IEP goals of families, with specific attention to the role of assistive technology.  This includes a specification of technology-related IEP goals—adaptation timeline, change in level of functioning, access, community acceptance, and adaptability to associated devices, for example—as well as potential positive and negative outcomes, and guidelines for IEP team responses, to such goals.

        Augmented and alternative communication (AAC).  Sigafoos (1999) outlines a means for promoting and facilitating increased communication for persons with disabilities by means of augmented and alternative communication (AAC).  His method centers on involving those with disabilities in the initiation of their own communication, and encompasses the identification of opportunities for communication, creation of the need for communication, and maximization of the instructional benefit of identified communication opportunities.  It also specifically accounts for the student-teacher dynamic.

        Electronic portfolios.

        “I Can” and “I Did” model.  Kleinert, Harrison, Fisher, and Kleinert (2010) ask the questions, “How can [students’] self-advocacy skills be strengthened?” and “What can teachers and administrators do to support this growth?”  In answer, they detail the methods used by the Kentucky Youth Advocacy Project (KYAP) to train students and school faculty members in self-advocacy and self-determination, as well as to support ongoing self-advocacy and self-determination by way of “strong communication systems.”

        IEP-Centered.  Interventions specific to IEP development exist to empower students in the process.  Not only are these interventions focused on involving students, but they are also results-oriented.  Students who learn self-advocacy through methods like the Self-Directed IEP (Arnt, Konrad, & Test, 2006) and the Student-Led IEP (

                Self-directed IEP.   Asserting that, “teachers and other professionals have historically made decisions for students with disabilities, it is no surprise that individuals with disabilities often lack self-determination skills,” Arndt, Konrad, and Test (2006) offer evidence to support the “self-directed IEP” as a method of reducing student intimidation of the IEP meeting and increasing student participation in the IEP development process.  Their study followed five high-school students (all with existing IEPs) through preliminary real and mock IEP sessions in order to establish a baseline, and then administered the 10 instructional lessons outlined in the Self-Directed IEP multimedia package (Martin, Marshall, Maxson, & Jerman, 1997).  Arndt et al. (2006) then observed post-instruction mock and real IEP sessions, and found that each of the five study participants had considerably improved from their baselines, in terms of self-advocacy.  Arndt et al. (2006) conclude that, while the Self-Directed IEP multimedia package is “teacher and user friendly, and provides for various student accommodations,” additional and/or alternate provisions could improve the instruction process, as well as student outcomes.  It is self-evident that, given the rapid advancement of technology, the most current technology-based interventions are worthy of ongoing consideration in this regard.

        New media.  New media is constantly evolving, and therefore so are the ways in which students with disabilities may use new media to self-advocate.  Creative options include web page development, site building, social media, and more.

        Picture dictionaries.  Students with hearing and/or intellectual disabilities often face communication challenges associated with mismatched modalities of communication (e.g. using sign language in a spoken language setting).  Allgood, Heller, Easterbrooks, and Fredrick (2009) found that picture dictionaries aid functional communication in situations of mismatched communication modalities.  Not only did the picture dictionaries facilitate increased request initiation in the study population, but they also led to improvements in spelling (Allgood, Heller, Easterbrooks, & Fredrick, 2009).

Student Self-Advocacy

        In light of the body of research legitimizing the need for student empowerment within the IEP context, the promotion of student involvement in the IEP development process is a growing priority, so much so that the Individuals with Disabilities Education Act (IDEA) mandates that students ages 14 and up must be invited to their own IEP meetings (Test & Neale, 2004; IDEA, 1997).  Unfortunately, few students take advantage of this opportunity (Lancaster, Schumaker, & Deshler, 2002).  As such, student self-advocacy has become a primary focus of research into IEP development (Test & Neale, 2004; Hart & Brehm, 2013).  

        Self-advocating students are able to communicate their goals, preferences, and experiences in order to play an active role in the development of their IEPs (Hart & Brehm, 2013).  They express their choices, make decisions, assert themselves appropriately, and evaluate their own behavior (Kleinert et al., 2010).  Test and Neale (2004) found that students oriented to self-advocacy demonstrated a significant increase in relevant verbal communications while participating in their own IEP meetings, and also that these students’ verbalized goals were often integrated into their IEPs.  This substantiated advantage for self-advocating special needs students necessitates instruction related to student participation in the IEP development process.

        Communication skills actualization.  Kleinert et al. (2010) posit that “an essential element for nearly all of the component skills of self-determination is the student’s ability to communicate.”  Cascella and McNamara (2005) provide a specific framework for “creating communication actualization outcomes.”  This includes creating a “communication profile” listing the student’s methods of communication and the associated drives behind those methods, integrating the communication profile into classroom modes of communication, developing a communication support plan, and expanding the communication profile within it.

        Self-determination. Turnbull, Turnbull, and Wehmeyer (2010) define it as “the ability of individuals to live their lives as they choose, consistent with their own values, preferences, and abilities.”  The research of Gilberts, Agran, Hughes, and Wehmeyer (2001) shows that self-determination skills are positively linked to “enhanced academic performance and more active class participation.”  Some might say self-determination precedes self-advocacy, while other might argue the two develop alongside one another.  Whatever the case, it seems inarguable that the two concepts are intrinsically linked and in support of one another.  Hart and Brehm (2013)

        Student self-advocacy instruction.   Research evidences the viability of student involvement in each of four stages of IEP development: planning, drafting, revising, and implementing (Uphold, Walker, & Test, 2007).  However, many students with disabilities require explicit, systemic instruction on how to self-advocate during the IEP development process if they are to be successful in communicating their needs and having those needs met through their IEPs (Lancaster et al., 2002; Arndt, Konrad, & Test, 2006).

        Mason, McGahee-Kovac, and Johnson (2004) outline three levels of student involvement during IEP meetings: Level One, in which students provide information about their preferred plans (i.e. IEP goals); Level Two, in which students provide information about their disabilities and preferred accommodations (i.e. tools with which to reach their IEP goals); and Level Three, in which students provide Level One and Level Two information, as well as lead the IEP meeting from introduction to closing.  They suggest a series of six “preparation sessions” prior to the IEP development, through which students are instructed on how to communicate at the level(s) most appropriate to them.  During these preparation sessions, students learn of their legal rights under the IDEA, review the sections of their existing IEPs, request input from concerned parties as to the development of new IEP goals, draft preliminary goals for upcoming IEP meetings, and rehearse actively leading an IEP meeting.

        Self-advocacy resources.

        Barriers to student self-advocacy.  When advocating for themselves, students are often apprehensive about using methods that set them apart from their peers; this often applies to the use of technology (Parette & McMahan, 2007).  For this reason, familial input is integral to IEP development, as “sensitivity to the family has the potential to ensure that appropriate assistive technology devices are identified, secured, and implemented effectively, in school, home, and community settings (Parette & McMahan, 2007).  Not every student has the type of familial support necessary to fully realize self-advocacy.  Moreover, it’s likely that many families would need instruction and support for the development of technology-based IEP communication tools like electronic portfolios, and that, additionally, many families won’t have access to, or the financial means to procure, the software and equipment necessary for the production of electronic media (Thompson et al., 2007).  Thompson et al. (2007) also point out that even effective technology-based communication loses value without proper support from the school district.  

The Role of Technology in IEP Development

        Mason et al. (2004) point to a “lack of resources to assist teachers in adequately preparing students for participation in IEP and transition meetings.”  In their studies, encompassing preliminary data collection, observations of student-led IEP meetings, and interviews with both students and teachers, Mason et al. (2004) found that both students and teachers expressed some dissatisfaction with limitations on student self-advocacy resources, implying a universally-acknowledged need for increased opportunities in the realm of student self-advocacy.  A growing body of scholarly research covering technology-based IEP resources illuminates the ways in which technological advancements may be used to bridge that gap and, as well, indicates areas in which further research may progress the movement toward technology-aided student self-advocacy in the IEP development process.

        Web-based informational resources.  Mason et al. (2004) list a number of web-based resources for both students and teachers.  These include websites, as well as publications that may be found in online scholarly databases.  Citing a “lack of widespread classroom implementation of self-determination instruction,” Uphold, Walker, and Test (2007) aim, specifically, to provide “no-cost” resources to students and teachers interested in self-led IEPs.  Their research encompasses a list of websites that may be used for guidance through three of the four stages of the IEP development process—planning, drafting, and revising.        

        Electronic portfolios.  Gallagher (1998) provides that, in the academic setting, a portfolio may be defined as “an organized collection of student products.”  Ahn (2004) broadens this definition to include electronic portfolios, which utilize “a range of technologies typically available to students.”  Cited examples of such technologies include Powerpoint, scanners, and digital photography (Glor-Scheib & Telthorster, 2006).  The Family Assessment Portfolio (FAP) formats outlined by Thompson, Meadan, Fansler, Alber, and Balogh (2007) may even encompass a movie component and/or a web-based profile (i.e. a web page with audio and video links, photos, and text). The advantages of electronic portfolios in a self-directed IEP setting are numerous; they include increased student enthusiasm, self-determination, and involvement before and during the IEP development process (Glor-Scheib & Telthorster, 2006).  Additionally, Glor-Scheib and Telthorster (2006) point out that students with communication disorders may not have the confidence or skill set to actively participate in a self-directed IEP situation, and that, in cases like this, electronic portfolios may be able to circumvent this limitation by allowing for visual communication of student goals and preferences.  Their research includes case studies highlighting instances in which electronic portfolios have been used as effective communication tools for students facing communication barriers, as well as suggested templates, frameworks, content types, and categories for electronic portfolio creation.

Transitioning        

        Research shows self-determination to be a skill that positively contributes to successful major life-stage transitions (Algozzine, Browder, Karnove, Test,  & Wood, 2001; Wehmeyer & Palmer, 2003).  Black (2010) puts forth digital transition portfolios as a “technology strategy to support the development of self-advocacy skills for students with high-incidence disabilities as they transition through their secondary education.

Barriers to Student Self-Advocacy

        When advocating for themselves, students are often apprehensive about using methods that set them apart from their peers; this often applies to the use of technology (Parette & McMahan, 2007).  For this reason, familial input is integral to IEP development, as “sensitivity to the family has the potential to ensure that appropriate assistive technology devices are identified, secured, and implemented effectively, in school, home, and community settings (Parette & McMahan, 2007).  Not every student has the type of familial support necessary to fully realize self-advocacy.  Moreover, it’s likely that many families would need instruction and support for the development of technology-based IEP communication tools like electronic portfolios, and that, additionally, many families won’t have access to, or the financial means to procure, the software and equipment necessary for the production of electronic media (Thompson et al., 2007).  Thompson et al. (2007) also point out that even effective technology-based communication loses value without proper support from the school district.

Methodology

        Describe auto ethnography as “a method of research grounded in lived experience and evocative modes of representation that seek to engage readers emotionally, aesthetically, ethically, and politically.”  Although I initially began my research with a survey in mind, I realized shortly into data collection that a survey simply wouldn’t represent the side of student self-advocacy I wanted to illuminate.  My goal is to give a voice to the students and parents who must navigate an IEP development process that isn’t necessarily accessible to the very population it is meant to serve.  In order to do that, I must show what goes on behind closed doors.

        My story, although certainly unique, is representative of the underlying problem in the current-standing IEP system, as I see it:  No two children are alike, and my son’s IEP may be vastly different from his classmates’ IEPs.  When advocating for Nathan in the IEP development process, the most important thing I must do is communicate Nathan’s unique, individual needs.  Each IEP assessment must be approached in that manner.  So in this case it just made sense to me that a thick description of what the process is like for us is the best way I have of exemplifying the intricacies of the IEP development process, itself.

Theoretical Lens: Social Construction of Reality

        In spite of Nathan’s proclivity for silence, one of his first spoken phrases was relatively complex: “I love you.”  Only it came out, “Iyuyou.”  I would say, “I love you” and Nathan would say, “Iyuyou” in return.  Sometimes when I held him he’d say, “Iyuyou” and give me a snuggle, a hug, or a slobbery kiss. It was clear to me—unmistakable, even—that my cherub-faced baby who barely uttered a word was saying, “I love you”—this when he was about eighteen months old.  

        It was with great pride that I encouraged Nathan to say, “Iyuyou” to his grandmother.  We were standing in her foyer, exchanging greetings.  “Tell Nana you love her,” I said.  

        With some prompting Nathan braved past his introversion and said, “Iyuyou.”  But Nana wasn’t convinced.  She said, “Oh, come on!  He’s not saying I love you!”  Nathan flushed and retreated back to his inner self.  My heart spasmed.  The pain moved down to my stomach and took residence there as a sick and heavy lump.

        Never again did I witness baby Nathan attempt to say, “Iyuyou.”  He refused to say it even when I begged.  It was as if he’d forgotten how to form the words.  But I knew better than that.  That wouldn’t have made sense.  It seemed to me that his Nana’s disbelief in his ability to say I love you was enough to scare this sensitive child away from trying altogether.  Nathan would not again attempt to say, “I love you” until well into his fourteenth year.

        When he was five (several months after registering for kindergarten), Nathan qualified for an IEP, after I requested the school evaluate him for special education.  A number of circumstances informed my request: Nathan’s progress reports had been consistently disappointing; his self-esteem was visibly slipping; testing showed little if any academic progress; and I worried that his teacher was mistreating him.  During that time period I met Nathan and his classmates for lunch in the school cafeteria several days a week. Two of Nathan’s classmates spoke regularly of Nathan’s teacher yelling at him.  It seemed to me he might not have learned anything at all.  Nathan’s teacher, guidance counselor, several special education professionals, and a psychologist populated a round conference table at our first meeting.  We seemed to be enveloped by a cloud of somberness.  Few attendees made regular eye contact with me.  That is, other than the psychologist—a district employee charged with assessing Nathan’s learning aptitude in the public school system (i.e. Intelligence Quotient).  The psychologist was overtly sure of himself.  Although I remember little of our exchange that day, some details are indelibly branded on my memory.  The psychologist reported that, after an hour or so spent with my son, he’d ascertained that Nathan was “severely cognitively delayed.”  He explained that Nathan couldn’t count past one.  When I asserted that I’d witnessed Nathan counting to ten on numerous occasions, the psychologist acted as though he didn’t believe me.  He referred to my son as “ineducable” a number of times.

        Nathan was sitting next to me to witness the whole thing.  My instinct was to cover his ears—to shelter him from any audible indication that he might not be capable of functioning as any “normal” boy would be.  By then I’d learned what a very powerful scaffolding for negative self-image labeling can be. I was thoroughly infuriated at this man’s quick and careless labeling of my son.  Nathan’s dad—my now ex-husband, Matt—was equally infuriated.  The meeting rapidly devolved into a questioning of the psychologist’s intelligence.  

        Looking back, I know that Matt and I were experiencing a combination of shock, disbelief, anger, and grief that day—a potent mixture that would take years to sort out emotionally.  It was clear to me that Nathan’s academic progress would be significantly hindered by the mere fact of others’ perceptions of disability.  And for years, that’s what happened.  

It is through this lens—the social construction of reality—that I will focus my research, as I believe our efforts at Nathan’s self-empowerment will undoubtedly account for social construction of disability.

Data Collection

        Although auto ethnography is qualitative, it may still be data-driven.  The point is to deliberately, thoroughly, intellectually, investigate a topic and report back on what you’ve found.  It follows that conceivably any number and type of data may do for rounding out the picture.  For this auto ethnography, I conducted a survey^[1], examined social media trends, reviewed about a decade’s worth of Nathan’s IEP records, reread my own journal entries dating back to 2001, conducted informal interviews with relevant parties, recorded and reviewed conversations with relevant parties, produced a documentary chronicling our (his and my) experience of “the research project,” and engaged in reflexive thought.  Although some of these data were less useful than others, it is the mosaic of shared meaning between all of them that comprises the final findings.

Results

Survey

        There were 29 respondents in two weeks (the length of time I waited before deciding to invest fully in my auto ethnographic research).  Of these, eleven (37.93%) did not qualify as either a parent of, or a teacher/school administrator involved in the development process for, a student aged fourteen or older with an in-place IEP.  Of the ten parents who qualified, only five completed the survey; of the eight teachers/school administrators who qualified, six completed the survey.  The survey responses reveal that both parents and teachers are supportive of student self-advocacy in the IEP development process.  However, both populations believe students need instruction on self-advocacy.  Additionally, technological resources that may be used to aid self-advocacy communication are underused; this is reportedly due to a lack of understanding of the resources and how they might be integrated into IEP development.

        Survey was not the best way to approach this research, in this particular scenario, for a number of reasons: the target population is small.  The online aspect also made it impractical to target the very population the research aims to empower (students ages fourteen and up) within the time constraints of the capstone program.

Conversations.  

        I recorded and reviewed a number of conversations with Nathan’s educators and advisors.  They revealed some common themes: Nathan’s condition is misunderstood, and teachers often answer to their own perceptions of Nathan’s abilities rather than comply fully with the accommodations listed on his IEP.  One particularly troubling conversation I had was with Nathan’s career development teacher, “Mr. Boarhead.”  Mr. Boarhead complained that Nathan wasn’t completing work that was “really so simple” that “even a second grader could do it.”  When I attempted to explain to Mr. Boarhead why this particular assignment (centered on terminology and recall) really wasn’t simple at all for Nathan, Mr. Boarhead cut me off.  He actually refused to hear my explanation even after I asserted several times that he hadn’t let me finish.  He was convinced that he was “up on that [the disability] aspect of things” because he has a nephew “with special needs,” and that I was “making excuses.”  As it was clear to me we were getting nowhere in our conversation, I drafted a letter detailing the conversation, along with Mr. Boarhead’s gross misjudgings and scientific inaccuracies (accompanied by supporting documentation), and sent a copy to Mr. Boarhead and the appropriate school administrators.  This incident is just one of several like it.

Documentary

        Initially, the documentary’s aim was to provide an insider’s perspective of the real affect the IEP has on a student’s life.  In the process of putting the documentary together, I had to contact the school administrators responsible for coordinating, planning, and mediating Nathan’s IEP meetings.  On one occasion, my effort at documenting the process of scheduling—or even discussing—an IEP meeting were shut down by the school.  Although it is my legal right to audio record IEP meetings (IDEA, 1997), school administrators were uncooperative when it came to participating in telephone conversations they knew were being recorded.  On another occasion, Nathan’s advisor blatantly disregarded IDEA law by attempting to turn down my IEP meeting request.  It was clear

Social Media

        I disseminated my survey through a number of social media channels: Facebook, Linkedin, subject-specific blogs, and a specialized website (showcasing my research).  If the reality of garnering so few survey responses was a disappointment, then the response I received to my research through social media channels was invigorating.  Most remarkably, I heard from parents, educators, school administrators, paraprofessionals, blog curators, and more—and they all expressed discontent with the current-standing IEP planning process^[2], which as one assistive technology blogger describes, is “rigid and archaic.”  In a Facebook posts, one educator described his experience working with families in the IEP development process as “heartbreaking.”  He explains that he does not have access to the resources he needs in order to empower those students toward their own success.

Reflexivity

        The most startling—and perhaps the most compelling—place this research has taken me has been an exploration of my own role in shaping Nathan’s attitudes toward school, IEP development participation, and communication in general.  The process, itself, of writing about the experience was revelatory.  Face to face with narrative after narrative about Nathan’s ongoing struggles to succeed academically, I couldn’t help but realize just how much his disability has been shaped by others’ perspectives—including my own.

Analysis

        A number of themes emerged through a thorough analysis of the data.  They reveal issues that may be approached pragmatically.  This is a point of hope for families facing the IEP development process.  There is much potential for improvement, with the right focus.

        The IEP development process is inaccessible to students and their families.  IEP documents are generated using software that students and parents are unfamiliar with.  The language used in IEP documentation is technical and specialized (i.e. not easily understood by the layperson).  IDEA law is difficult to understand, and not all school faculty—not to mention students and parents—are fully versed in it.

        The academic community may have only limited knowledge of a disabled student’s special needs.  This is evidenced to the extreme in my conversation with Mr. Boarhead.  However, he is only one teacher of many who have implied that Nathan is not participating as he “should” in class (i.e. writing after his hands tire, volunteering to answer questions, keeping up with notes, etc.) because he is either lazy, stubborn, or disrespectful.  Some of this surely stems from social construction, but it’s also plain to see that not everyone Nathan comes into contact with will understand how his Muscular Dystrophy works.  And that goes for all students with a disability.  This evidences a need for specialized information and instructions that only parents (or qualified disability advocates) can deliver.

        Not all barriers to self-advocacy are readily removable.  Even if all parties involved go into IEP planning with the best of intentions, there is no fool-proof way to ensure students’ satisfactory self-advocacy experiences.  This is not to say that student self-advocacy is impossible in some situations—but improbable?  Yes.

        Technology is an untapped resource.  There are numerous technological interventions that may be used for communication, self-advocacy, and instruction.  However, very few students take advantage of technological resources, very few families understand what their options are, and very few educators feel they have the knowledge and support they need to be able to extend those technological resources to families.  Unfortunately, there is no easy solution to this, as time and money resources are scarce.

Discussion and Conclusion

Mainstreaming Self-Advocacy Instruction

        As Lancaster et al. (2002) point out, scientifically validated methods of student self-advocacy instruction already exist.  However, time and teaching opportunity limitations deter self-advocacy communication instruction in the classroom setting.  One noteworthy antidote is that of mass appeal: Self-advocacy is an advantageous skill for any type of student.  Therefore, integration of self-advocacy instruction into current-standing educational lesson planning is a worthwhile endeavor.  Researchers interested in giving voice to the disabled community may use this majority momentum toward strengthening their minority initiatives if they can demonstrate the ways in which self-advocacy communication instruction could benefit society.

Exploring the Role of Technology in Student Self-Advocacy

        It has already been successfully argued that technology aids student self-advocacy, especially for those in the disabled community.  The implementation of technology-based student self-advocacy tools and methods is reliant on assistance from state and federally funded social workers, case managers, and specialized IEP planning team members (Thompson et al., 2007).  Citing IDEA law, Huard (2005) argues for district employment of numerous specialized IEP team members to “to ensure the compatibility and implementation of software or hardware accommodations with current equipment and installation of requested programs or hardware as needed.”  Therefore, prompts exist for future research into the integration of technology into self-directed IEP meetings and development.  However, there is as of yet no set initiative for a technology-focused revision of the IEP development process.

References

Abrami, P. C., Wade, A., Vanitha, P., Ofra, A., Bures, E. M., Bentley, C.  (2008).  Encouraging         self-regulated learning through electronic portfolios.  Canadian Journal of Learning and         Technology 34(3).  

Ahn, J. (2004). Electronic portfolios: Blending technology, accountability, and assessment.        THE Journal, 31(9).

Algozzine, B., Browder, D., Karnove, M., Test, D. W., and Wood, W.  (2001).  Effects of         interventions to promote self-determination for individuals with disabilities.          Review of Educational Research, 71(2), 219-277.

Allgood, M. H., Heller, K. W., Easterbrooks, S. R., & Fredrick, L., D. (2009). Use of picture         dictionaries to promote functional communication in students with         deafness and         intellectual disabilities. Communication Disorders Quarterly, 31(1), 53-64.

Arndt, S. A., Konrad, M., & Test, D. (2006). Effects of the self-directed IEP on student         participation in planning meetings. Remedial and Special Education, 27(4), 194-207.

Cascella, P. W. & McNamara, K. M.  (2005).  Empowering students with severe disabilities to         actualize communication skills.  Teaching Exceptional Children, 37(3).  38-43.

Chadwick, S. A. (2001).  Increasing students’ communication skills and knowledge of research         methods through web page development.  Communication Teacher 15(3).  9-10.

Flores, M., Musgrove, K., Renner, S., Hinton, V., Strozier, S., Franklin, S., & Hil, D.  (2012).  A         Comparison of Communication Using the Apple iPad and a Picture-Based System.          Augmentative and Alternative Communication 28(2).  74-84.

Gallagher, J. D. (1998). Classroom assessment for teachers. Upper Saddle River, NJ: Merrill-        Prentice Hall.

Gilberts, G. H., Agran, M., Hughes, C., & Wehmeyer, M. L.  (2001).  The effects of peer-        delivered self-monitoring strategies on the participation of students with severe         disabilities in general education classrooms.  TEACHING Exceptional Children, 45(5).         35-48.

Glor-Scheib, S., & Telthorster, H. (2006). Activate your student IEP team member using         technology: How electronic portfolios can bring the student voice to life! TEACHING         Exceptional Children Plus, 2(3).

Goodin, G. L., & Meholin, K. (1990). Developing a collaborative speech language         intervention program in the schools. Best Practices in School Speech Language         Pathology, 1, 89-100.

Hart, J.E., & Brehm, J. (2013). Promoting self-determination: A model for training         elementary students to self-advocate for IEP accommodations. TEACHING         Exceptional Children, 45(5), 40-48.

Hinton, V. J., Fee, R. J., Goldstein, E. M., & De Vivo, D. C.  (2007).  Verbal and memory skills         in males with Duchenne Muscular Dystrophy.  Developmental Medicine and Child         Neurology, 49(2).  123-128.

Huard, M.  (2005).  Special education: A travel guide for the road ahead.  ABEA Journal, 24.          19-22.

IDEA, Individuals with Disabilities Education Act Amendments of 1997, P. L. No. 105–17, 20         U.S.C. §1400 et seq.

Kleinert, J. O., Harrison, E. M., Fisher, T. L., Kleinert, H. L.  (2010).  “I can” and “I did”—self-        advocacy for young students with developmental disabilities.  Teaching Exceptional         Children, 43(2).  16-26.

Lancaster, P. E., Schumaker, J. B., & Deshler, D. D. (2002). The development and validation         of an interactive hypermedia program for teaching a self-advocacy strategy to         students with disabilities.  Learning Disability Quarterly, 25, 277-302.

Martin, J. E., Marshall, L. H., Maxson, L., & Jerman, P. (1997) Self-Directed IEP.         Longmont,         CO: Sopris West.

Mason, C. Y., McGahee-Kovac, M., & Johnson, L. (2004). How to help students lead their IEP         meetings. TEACHING Exceptional Children, 36(3), 18-25.

Montgomery, J. K., Kahn, N. L.  (2003).  You are going to be an author: Adolescent         narratives as intervention.  Communication Disorders Quarterly 24(3).  143-152.

Parette, P., & McMahan, G. A. (2002). What should we expect of assistive technology?         Being sensitive to family goals. TEACHING Exceptional Children, 35(1), 56-61.

Sigafoos, J. (1999). Creating opportunities for augmentative and alternative         communication: Strategies for involving people with developmental disabilities.         Augmentative and Alternative Communication, 15(3), 183.

Test, D. W., & Neale, M.  (2004). Using the self-advocacy strategy to increase middle         graders’ IEP participation. Journal of Behavioral Education, 13(2), 135-145.

Thompson, J. R., Meadan, H., Fansler, K. W., Alber, S. B., & Balogh, P. A. (2007). Family         assessment portfolios: A new way to jumpstart family/school collaboration.         TEACHING Exceptional Children, 39(6), 19-25.

Turnbull, A., Turnbull, R., & Wehmeyer, M. L. (2010).  Exceptional lives: Special education in         today’s schools (6th ed.).  Upper Saddle River, NJ: Pearson Education.

Uphold, N. M., Walker, A. R., Test, D. W. (2007). Resources for involving students in their         IEP process. TEACHING Exceptional Children Plus, 3(4).

Wehmeyer, M. L., & Palmer, S. B.  (2003).  Adult outcomes for students with cognitive         disabilities 3 years after high school: The impact of self-determination.  Education         and Training in Develomental Disabilities, 38, 131-144.

Wicksell, R. K., Kihlgren, M., Melin, L., Eeg-Olofsson, E.  (2004).  Specific cognitive deficits         are common in children with Muscular Dystropy.  Developmental Medicine and Child         Neurology, 46(3).  154-159.

Appendix A

Survey Instrument

The complete survey can be found online: http://www.graspingforgrades.com/#!grasping-for-grades-survey/c3e7

Appendix B

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