The experience of raising a child with a disability is, without a doubt, qualitatively and even quantitatively different from raising a typically developing child. Educators must develop a better understanding of the experiences of families in order to promote successful and long-lasting collaboration. Educators are in a unique position to make or break this experience through their interactions with parents. While it is not possible for everyone to “walk in their shoes” of parents, it is entirely possible to increase understanding, empathy and better practices right from the start. Educators may, in absence of good guidance in training, inadvertently contribute to break downs in collaboration.
Collaboration is the process of coming together to mutually contribute to problem solving. There are a number of ways that educators unknowingly contribute to collaboration breakdowns (Blue-Banning, Summers, Frankland, Nelson & Beegle, 2004). Assumptions about what parents should be doing, based upon what typical parents can do (when they have the resources) is one source of conflict. Challenging behaviors due to breakdowns in social-communication, sensory issues or past learning and reinforcement history can cause serious division. Educators may develop the expectation that parents have far more responsibility for their child’s behavior than it reasonable to expect. Assumptions about the child’s behavior being a direct result of lax parenting or overindulgence can lead to blame—in this world view, the parent is responsible for the child’s behavioral excesses. The unfortunate result is, in the worst case scenario, an absolution from building positive behavior support strategies in school, as the “cause” is assumed to be within the home.
Equality in Collaboration
Successful collaboration is fostered by all members of a team coming to the table adequately prepared and able to contribute to educational planning. Educators are in a privileged position of being “insiders” into the process—they are employed members of the LEA (Local Education Agency). When the IEP meeting is convened the ratio of parent to educational staff is heavy on the “district side.” The district members have access to information by virtue of their day to day work, often many days in advance of the meeting. It is common for parents to report that the first time they saw the IEP was at the meeting. This marginalizes parents from truly participating in the process.
Parents’ expertise can sometimes be discounted in the IEP process. The unwritten assumption may be that a school professional’s degree trumps the parent’s unique and intimate knowledge of their child. Degrees and titles can intimidate parents and lead to deference to professional authority (Wellner, 2012). This phenomenon results in a loss of valuable information and input from families who have known, lived and developed incredible expertise in the care of their child (Hess, R.S., Molina, A.M. & Kozleski, E.B. 2006). This form of “professional dominance,” still common in the medical and educational fields, can serve to create dissonance between educators and parents. Parents want and need to feel respected and honored for what they bring to the collaboration effort.
The IEP Meeting
Related to this is the tone and tenor of the IEP meeting. Educators may not realize that the way they conduct meetings can make or break the collaboration experience. IEP meetings are stressful for parents due to the medical model that continues to pervade Special Education. The terminology used in evaluation and IEP proceedings can be foreign and overwhelming. Parents and caregivers have to reveal much more information about their child’s health and development than typical parents. Deficits and behaviors are often necessary to discuss as a springboard for educational planning. This experience is painful, stressful and may result in parents feeling blamed for their child’s disability. Most educators will never walk in their shoes. Without this first-hand knowledge, how can we build understanding and empathy in educators to avoid situations that erode collaboration experiences?
Right from the Start
Educators may become frustrated with what they perceive as negative experiences with families. It is indeed a difficult dance to get this right, and all educators experience successes and failures in their career during attempts to collaborate. As a former Special Education teacher, I recount my own experiences and frustrations with families. Sometimes I was able to create and maintain a good relationship with families while other times it seemed that no amount of effort was going to change the reality of the situation. I also recall hearing many negative statements from fellow educators regarding the parenting practices of my families, their “demands” or their child’s behaviors. Now a faculty member responsible for preparing future teachers, I often hear my candidates express similar thoughts and frustrations, many of which appear to come directly from being socialized into the profession by more experienced educators. These perceptions appear to crystallize very early in the “life” of the educators we train. One possible and logical solution is that pre-service educators gain exposure to families directly in order to change their opinions before they become ingrained and hard to change.
Parent Panels: The Ultimate Experts
Practitioner-friendly information on collaboration with families is readily available in most textbooks as well as professional, peer-reviewed articles crossing multiple disciplines (e.g. Edwards, C.C. & Da Fonte, A. 2012; Whitbread, K.M., Bruder, M.B., Fleming, G. & Park, H.J. 2007). No amount of written material can replace the power of an informant who presents the reality of life in human form. I had found that delivering information about the experiences of families as well as listing and reviewing best practices resulted in little to no development of understanding and empathy with my pre-service candidates. In order to create a more meaningful experience I developed what we now call our Expert Parent Panels. This is a group of dedicated volunteers who come each semester to speak with my students in various class settings, with the goal of reaching each cohort/group at least once in their training program. These parents are typically raising a child with ASD (and in some cases, more than one) and are interested in changing the course of assumptions and misunderstandings pre-service teachers at risk of developing.
Panel Basics: Preparation and Recruitment
Pre-service candidates are prepared for this experience by reading several assigned articles regarding best practices in collaboration as well as examining their own assumptions about collaboration with families of children with ASDs. Candidates come prepared with a set of individual questions that have been developed for the class session. Examples of the questions that have been posed by candidates as well as the main questions asked by faculty to the panel are available upon request from the author.
Panel experts are recruited from a variety of sources including word of mouth, social media and personal/professional contacts in the community at large. The panel experts are typically highly motivated and come with various positive and negative experiences. Every one of them has a story to tell. They are not given any training other than a basic agenda of the panel as well as preparation for the questions they will be asked. This is intentionally done in order to preserve the uniqueness of the stories and input they choose to provide.
Panelists begin together as a group and are asked to introduce themselves. This is moderated by the faculty in charge of the class. The panel members are then asked to share specific experiences where they felt collaboration went well, followed by experiences where things were less than successful. This first activity usually takes about 30 to 45 minutes depending on the size of the panel group. Panel members then break away with small groups of candidates for private interviews. The entire experience lasts approximately two hours. Candidates write a paper describing their findings as well as creating a plan for collaboration based upon panelist input, lecture and readings.
The Expert Parent Panels have received positive reviews from both groups. In follow up surveys, candidates repeatedly identify this experience as one of the most powerful in their program. Many have written, post-certification, to report that they see parents much differently and work to advocate for better understanding and respect during collaboration. The panelists keep coming back due to the benefits they see from the process. They enjoy socializing these new educators and have reported that this process has helped them to “heal and move forward in the parenting experience” with their child (Private Communication, Expert Panelist, 2015).
Educators and families alike are called to collaborate in the process of educating children and young adults with ASDs. This process can benefit from understanding and empathy. Powerful articles and readings can contribute as well as input from educators and faculty who have experience. I would advocate that incorporating the voice and presence of parents and caregivers adds tremendous value to the pre-service training experience. While it certainly doesn’t mirror walking in the lived experiences of parents, it does go a long way toward better collaboration and rapport.
Vanessa Tucker, PhD, BCBA-D, is Assistant Professor of Special Education at Pacific Lutheran University. For more information, please contact Dr. Tucker at firstname.lastname@example.org.
Blue-Banning, M., Summers, J.A., Frankland, J.C., Nelson, L.L. & Beegle, G. (2004). Dimensions of family and professional partnerships: Constructive guidelines for collaboration. Exceptional Children, 70 (2), 167-186.
Edwards, C.C. & Da Fonte, A. (2012). The 5 point plan: Fostering successful partnerships with families of students with disabilities. Teaching Exceptional Children, 44 (3), 6-13.
Hess, R.S., Molina, A.M. & Kozleski, E.B. (2006). Until somebody hears me: Parent voice and advocacy in special education decision making. British Journal of Special Education, 33 (3), 148-157.
Wellner, L. (2012). Building parent trust in the educational setting. Leadership, 41 (4), 16-19.
Whitbread, K.M., Bruder, M.B., Fleming, G. & Park, H.J. (2007). Collaboration in special education: Parent-professional training. Teaching Exceptional Children, 39 (4), 6-14.