Parent's Experience with Interagency Case Planning

by David Philpott

Abstract

This article presents the findings of a study of parents' perception of their participation in interagency case planning for their child who is receiving special education support. A hermeneutic phenomenological method was used to identify the essence of this experience for a group of eight parents whose children have been diagnosed with Obsessive Compulsive Disorder. The study occurred in the province of Newfoundland and Labrador where a strong model of collaborative, interagency case planning is being used. Data was collected through observations of actual planning meetings, individual interviews with the parents and a focus group. The study found that this experience can best be presented in three distinct phases: The Process, The Coping and The Outcomes, in which parents stumble into a sense of empowerment despite the rhetoric of the policy or the significant fractures in implementation. What emerges is a unique view on the effectiveness of interagency case planning within a school context by exploring the balance between what McDonald (1981) references as three types of policy: written, stated and enacted. It affords a powerful glimpse into the experience of parents in the planning process for their children as well as the effect of educational practice in attempting to implement policy. What emerges is a challenge to educators to "listen to pedagogy" (Van Manen, 1997) so as to work towards true empowerment of parents and their children.

Introduction

Central to contemporary special education is the collaborative decision-making process between home and school (Heward, 2000; Winzer, 2002). Legislative provisions for special education placement and planning stipulate informed consent and parental involvement at all levels of decision-making (Brown, 1998; Rothstein, 2000). Tiegerman-Farber and Radziewicz (1998) elaborate on this shared decision-making process, seeing it as the hallmark of effective programs and the heart of special education, especially within the context of inclusive settings. However, while such collaboration is held as the ideal in special education, concern has been identified for the reality of practice (Gable, Korinek & Laycock, 1993; Harry, 1992; Leyser, 1985; Yanok & Derubertis, 1989; Voltz, 1994). Rock (2000) states that the barriers to parental empowerment are complex with "parents entering the process with a distinct disadvantage" (p.35).

In attempting to address such concerns, the Canadian province of Newfoundland and Labrador has adopted an interagency approach to case planning, referred to as an Individual Support Services Plan (ISSP), in which all service providers work collaboratively to identify and deliver required supports (Philpott & Nesbit, 2002). Central to this model is parent and child involvement, reflecting the global trend towards greater empowerment of the family within a philosophy of inclusion (Philpott, 2002). This relatively new model (Government of Newfoundland and Labrador, 1996) becomes the site for this study which explores the effectiveness of an interagency approach to case planning in promoting true collaboration from the perspective of parents.

Methodology

A hermeneutic phenomenology method was used to answer the question: What is the experience of parents in this model of case planning and does an interagency approach lead to true parental empowerment? A group of eight participants were selected via a criterion-based, unique case approach by asking health care agencies for referrals of parents whose children were diagnosed with Obsessive Compulsive Disorder (OCD). This population of parents, whose children require a multidisciplinary team of health professionals, counselors and educators to assist with program planning (Penzel, 2000; Stekette, 1999) would help ensure similarity of experience. Parents participated in a variety of data collection strategies including all eight being individually interviewed, five participating in observations of actual ISSP meetings and seven participating in a focus group. The interviews and focus group were audiotaped and transcribed for analysis while observations were recorded via field notes. Denzin and Lincoln (2000) encourage this combination of data collection practices that, "adds rigor, breadth, complexity, richness, and depth to any inquiry" (p.5). Likewise, a multiplicity of data analysis strategies was also used, chief among which was the bracketing experience, hermeneutic circle and thematic abstraction. Following a rigorous process of rewriting and reflecting, themes emerge that portray the essence of these parents' experiences.

A journey into shared and contested space

These parents, all mothers, were both articulate and eager to share their stories and describe what it is like to participate in the ISSP process. Words flowed with ease, offering insight into their wealth of awareness of this model of planning. They spoke with passion and determination about what it is like to collaborate with the school in supporting a challenging child. They were frank about the complexities of OCD, the confusion and turmoil caused and the obstacles they encounter in trying to obtain support for their child. In doing so, language becomes shared, experiences identified and a commonality of understanding emerges to form a roadmap into the essence of this phenomenon. In understanding the child's behavior and in supporting his/her development, what was once a routine school experience is now marked by a new language, by different participants and by the application of unfamiliar policies and procedures designed to help the child. In describing this they outline three distinct phases: The Process of initial introductions, realizations and growing awareness; The Coping with the reality of this changed experience and their attempts to establish support for their child; and, The Outcome of having to function in this process. We explore each of these phases individually, beginning as parents do, with their initial realizations.

The Process

These parents did not spend much time discussing their school experiences before OCD manifested. They began with their initial realizations of the magnitude of change that accompanied this diagnosis of OCD, their initial hope for the ISSP policy and their impressions of it as their realities became distinct from the rhetoric. We experience, as they did, the identification of a game metaphor to describe this collaborative process and their growing disillusionment and detachment from the ISSP model. One mother exemplifies this by beginning her story in a way that resembles a flashback, where the film's narrator transports the audience back to where the story first began...

Sometimes, when I think back on it, I wonder if it wasn't all a dream, if we actually lived through it. I have a file in the back of a closet that I don't want to look at but I don't want to throw out either. When I stop to think about some of the experiences we had because of his condition...you almost forget they happened but then you realize that they did...how bizarre they were, yet you lived through it.

The manifestation of OCD results in the child becoming more visible, with declines in scholastic achievement and challenges in social functioning. Obsessive thoughts and compulsive behaviors interfere with learning and challenge the ability to function in the regular class. This change often happens relatively quickly with an escalation in the child's behavior, in turn resulting in a referral to the health care system. As this happens, the previously routine interaction between parent and teacher begins to change. Parents discover that the teacher's ability to meet his/her needs can no longer be quietly assumed. While cognitively able to attain the curriculum, the behavior the child exhibits and the stress the accompanying obsessions bring, require extra attention, a degree of individualized help, and a level of understanding that the classroom teacher reports not to have. The parent looks to the teacher for professional understanding and empathy while the teacher looks back to the parent to get the child under control. The stress level of the teacher mirrors that of the parent and the limitations of both, individually and collectively, become apparent.

The vice-principal called about my son's behavior and said, "I don't know what I'm going to do with him, I just don't know! He got me drove off my head. He has me drove nuts!" I told my husband about the call and he said, "Finally, they understand. Now tell him that we have the child 24 hours a day, seven days a week. How does he think we feel?"

In attempting to explain their child's functioning they realize that the process of articulating the child's needs more closely resembles one of negotiating for understanding and support. Parents begin to discover there is a difference between what they perceive their child to need and what the child will actually receive. Differing perspectives, conflicting opinions, limited teacher time and lack of knowledge complicate the system's ability to implement individualized help and support this vulnerable child. The lack of understanding and support parents feel in trying to secure help for their child escalates their stress level while the challenging behavior of the child raises teacher stress. The once amicable relationship between parent and teacher is now compromised.

The ISSP process seems to promise a vehicle to resolve this conflict and to develop effective supports for both parent and teacher. Initial explanations of this individualized planning procedure, the available support services and the approaches to be taken, result in parents developing a positive impression that the school is prepared and able to help their child. As a result, they enter the process hopeful for positive outcomes, encouraged by the language of a policy that outlines role parity, open communication, prioritization of concern and the establishment of a caring environment. They view the written policy as being strong and reflective of their needs. They agree that all service providers should help develop a common plan, implement it and monitor its success. Parents want to be treated as equals in decision-making and have input into their child's program.

Early in the planning process however, they begin to suspect a difference between what is articulated in the policy and what actually happens. Being new to the process and worried for their child, initial impressions impact strongly on parents. While they are impressed with what the policy says and the planning process it outlines, parents are surprised to encounter obstacles to its implementation. They discover that teachers are slow to return telephone calls and that they have to wait for the help and support they are promised. I've waited months to get a meeting and It's hard even to get a teacher on the telephone.They discover that meetings are extremely difficult to schedule and, once held, are inefficient, disorganized, and are not child focused. Constant interruptions, excuses, and a focus on problems overshadow strengths and make parents feel confused, distracted and dismayed by what they begin to suspect is tokenism. One such meeting occurred in late May, 2002...

Although the experiences in this particular meeting seem rather extreme, parents described similar occurrences as being routine. Following the meeting, Mark's mother commented, You get completely used to it. You learn to become accustomed to it pretty fast because it certainly doesn't change. Other parents described it as, like beating your head against the wall ... [being] in the middle of this mesmerizing circus... and [having] no choice because there was nowhere else to go.

The meetings offer a deeper explanation of this new process of negotiating care and support for their child and become a powerful illustration of the changes that have occurred as a result of having their child identified with OCD. Finding themselves in the middle of this new ISSP planning process underlines a clear distinction between parenting a "regular" child and parenting one with an exceptionality. Assumptions no longer exist and negotiating for clarity results in very little common ground remaining between parent and teacher. In rationalizing their participation in this process, in spite of being disappointed with its realities, parents use the metaphor of game playing. They see the process as being composed of sides that are heavily stacked against them. Attending these meetings becomes a process of facing a strong opponent in this game field. Naming the process as game playing allows parents to subtly express that they are the opponents in a charade. Thrown into this complex game and facing this formidable team, parents see themselves as the outsiders, as the "other". They soon learn they must be vigilant to learn the rules and the plays.

The seriousness is totally beyond them. Last year, I didn't get my first meeting until January and then they said, "We are really sorry, but we are really busy and you know that the squeaky wheel gets the oil so we advise you to start calling earlier next year". I sat there flabbergasted that they would be so blatant about it and thought, what a game, what a game, how so un-serious these people take this to be.

This metaphor of "game playing" does much more than describe their growing realization that there is a nexus between intended approach and enacted practice. It also affords parents hope. As far as they are concerned they are engaged in the only game in town, and at least see the possibility of winning support for their child. The game metaphor allows them to both honor their growing realizations and insulate themselves against their emotions. Desperate for help, they attempt to try and make the game work for them as best they can, amid challenging players and rules.

It's a game that you will never win because the teams are stacked so strong against you and they have so little to lose by playing by unfair rules. You know that, but you can't really acknowledge it because you lose your energy and you really need your energy. So you keep playing, hoping against hope that you can stay at the game long enough for the child to get an education. And any emotional/financial/familial cost you stay as silent as possible about.

This early realization that the meeting process does not result in recognition of need or increased support is quickly matched by a pronounced absence of follow-through on those supports that do get identified. Despite attendance at the meeting and participation in the game, a clear breakdown occurs between this newly developed plan and the consistency of teachers' implementation. Having the plan implemented becomes the chief source of parental frustration, resulting in numerous phone calls and school visits. Decisions made in the meeting are seen as paying lip-service to token care and support.

I was told that there would be accommodations and there never are. It's my understanding in the meeting that he is going to get help and he never does after the meeting ends...Initially, you think it's going to make a difference but after a while you realize that it isn't, that nothing will change.

Parents' growing disillusionment is heightened by the promises inherent in the language that reflects a political paradigm of shared decision-making, role parity and care provision. They frame this politicization of care as a sincere recognition of the legitimacy and severity of their child's needs. Parents are disappointed, yet they must continue to play the game. They become cynical about the language of a policy that articulates something radically different than they experience. They interpret the process as one that articulates procedures to care for children yet fails to ensure that the child, or the family, feel cared about. While the language of the policy frames a model that is built upon care, parents seldom see caring displayed in their child's daily school experiences or in how they are treated. The process is seen as politicizing an image of care that covers an absence of it.

As disillusionment grows, the ISSP is seen as rhetoric, focusing on terminology, forms and procedures. Parents, as well as teachers, refer to the plethora of documentation as covering your ass, in which they follow the politically correct process knowing that there is little expectation of implementation. Parents see teachers as being oblivious to the rhetoric of their profession. There are so many forms that even teachers get lost. Teachers are not seen as being willfully neglectful of providing care but rather as players in a system that cannot deliver what is promised. Parents recognize the irony in a model that stipulates that the lone classroom teacher has to deliver supports that a team of people is required to develop.

The perspective of teachers is introduced in this study because three of the parents were also teachers. Speaking from a dual perspective, they verbalized the irony and the conflict is inherent in the implementation of the ISSP. Interestingly, this "double view" does not bring a common perspective, but rather a separation of understandings. As teachers, these parents articulate the struggle to deliver care in a system that overwhelms. As parents, they voice frustration with the absence of support for their child. The first priority of parents, regardless of their profession, is to "parent". Seeing the model as creating a platform for conflict, and seeing teachers as having to become "blind" players in this system, these parents use this additional vantage to allow them a heightened awareness of the game.

Being a teacher myself I know their frustrations. Perhaps if I weren't in the system I wouldn't be as understanding of some of the things that went on but it put me into a better position. Knowing how the system ran really helped me. I knew the game so I played it better.

Parents see themselves as having to engage in a process of emotional separation from these painful realities so they can help their child cope. They see teachers as being engaged in a similar process so they, too, can cope. Any opportunity for commonality of experience and perspective, once typical of their interactions, becomes lost in the process of negotiation and the game playing that the ISSP model creates. Ironically, a process designed to bring people together results in separations that create fractures in which empathy and concern become lost.

The worst experience was at the Grade Nine graduation ceremony, which they were still holding in the church at that point. They had the program typed with the graduating class list on the back. We were sitting there that Sunday morning with all the other families and I was reading through the class list, thinking that everything was so well done and it was all so very nice. I then noticed that his name wasn't on the list, that he wasn't included with the graduating class. That's when I found out that he had not passed his math and would have to go to summer school. That's when it hit me: he doesn't fit. He's not one of them. He doesn't belong. I can still cry over that.

The Coping

In delving into a deeper understanding of how these mothers cope we discover a profound sense of aloneness, stemming from the realization that the child is different, that s/he does not fit the system, and that the system does not offer thoughtful attentiveness to his/her needs. The degree of vulnerability that this isolation fosters can only be partially acknowledged as they budget their energies to help the child.

You bargain all the time: when to get upset, how upset to get, what to name, what to ignore, what to settle for-- knowing full well that there's more coming. It's like you budget your strength and energy for the bigger battles, which are coming... Sometimes you want to bang your head against the wall. Sometimes you want to crawl away and cry. Sometimes you have this deep sense of hopelessness that you know that they are going to do nothing. That's when you have to give yourself an extra pep talk so that you can get to the next station.

This realization of aloneness extends beyond the school system into the immediate and extended family as well. Partners, friends and siblings, unable to understand the complexities of the condition, become lost in knowing how to help.

He was involved in all the normal childhood activities but eventually he dropped out of each of them because it took so much effort to stay. He would try so hard to reach out to friends and nothing would come back. In Grade Eight a part of his ritual was to call the same four boys every single weekend. For six straight months he did this and they never once called back. The phone would ring and he would jump, only to be devastated when it wasn't for him. Finally it came to the point when we had to say..."there's no point in calling anymore."

Her father doesn't understand, which leaves me on my own to help her. His statement was "All she needs is a good kick in the arse". When he found out that I was also diagnosed with OCD he said, "I'd rather you had cancer. At least everyone would understand that."

Surprisingly, parents do not get mired in this loneliness but re-channel their energy into determination and persistence. As a result, they struggle to make the process work for them by being ever vigilant to procedures and strategic in their participation. In beginning their use of strategy, parents realize they have to become good at holding back their tears, compartmentalizing their experiences and focusing on immediate challenges. This forced detachment from their sense of loneliness and emotional burden of playing the game is, ironically, facilitated by their never being asked how they are doing or what they think of the process. It's amazing but in all the meetings that I've had in the past ten years no one ever asked what I thought of it or how I was feeling. Their aloneness insulates them from having to acknowledge the game, the personal price of playing it, as well as the disappointment and anger that accompanies the breakdown in support. They become so mired in daily battles they can't afford the luxury of looking into the future and facing any fears that reside therein. Emotional detachment becomes as much a result of the process as it is a survival tool for coping with it. Parents realize they must willfully lay down emotions and pick up strategy, using their knowledge of the rules of engagement to skillfully maneuver through this game in which they find themselves.

In these realizations parents discover they must create the support their child needs and strategically implement it. This strategic intervention includes the hiring of private counselors, assessors, tutors, and psychologists in their attempt to respond to their child's needs. In fact, a privatized system of care and support appears to be well entrenched in the experiences of the parents in this study. This strategy has a dual benefit of bringing individualized help to their child but also strengthening their "side" during these meetings and lessening their sense of aloneness.

My child had a psychiatrist, a private counsellor, a tutor and a private pediatrician but they are never invited. When they attend, I insist on it and I pay for it. Collaboration is something that costs a fortune and is only an illusion then because the minute they walk out nothing comes of it. The services that he has had that have made a difference are the ones that I have gone outside to purchase.

The age of expert knowledge being held by professionals is clearly past, according to the experiences of these parents. Few educational professionals understand OCD and fewer still are sensitive to the challenges of raising a child with it. Parents acknowledge the complexities of the condition and admit they struggled to understand it at first. However, this realization becomes channeled into a determination to educate themselves through print material as well as the World Wide Web. Many of these parents are involved in local and national advocacy groups. They begin to see themselves as the true experts on their child and attempt to share this expertise with the staff by providing reading materials, videotapes and conference information. One parent reported hiring, at her own expense, two professionals to go to her child's school and conduct a half day full staff in-service.

While parents must be experts on OCD, they know the dangers of declaring expertise in educational programming. They "know their place" at the game table. Parents voice an awareness of a need to exercise caution and report having to be careful with how far they push for support for fear of teacher reprisal, or getting their backs up. This fear is anchored in the realization that their child will have to remain with this teacher for the remainder of the year and that they will be continuing to look for support. Staying on their good side becomes central to the process, fueled in large part by an awareness that little by way of positive consequence will come from making complaints. Parents see teachers as not being held accountable for any lack of support and view the appeal process as ineffective. Higher authorities, such as the school board or Department of Education, tend to refer parents back to the school, despite the school being the source of the frustration. In fact, parents are fully aware that all professionals in the school system are members of the same union who feel they must protect one another against accusations.

There's a fine line between knowing how far to push to get the help he needs and when to draw back. There's a point beyond which you get diminishing returns... when you force things you really get their back up. If you go to the district office you totally get their back up. They completely fail to see that you had absolutely no choice but to go there because you have been so disempowered... But it's a system that forces you there-- not that it works, because all the district will do is refer you back to the school and cover for them if they did something wrong. No one is ever held accountable no matter how blatantly they are wrong.

Parents attend meetings to learn what is happening, using the rhetoric but not buying into it, walking through the process, but always working a subtext. By strategically re-working the system and becoming increasingly skilled at playing this game, parents channel their disappointment, loss and frustration into a system of support for their child. By doing so, they rediscover their innate ability to nurture and stumble upon a sense of power.

I have these imaginary conversations when I walk in there and say, "I know that you have 34 in your class. I know exactly what you have on your plates and I know what a thankless job you seem to think you have. But by the constitution of this country my child is entitled to an education the same as the child sitting next to him who doesn't have this disability, so you are going to do all you can to help him and I'm going to be on your back every single day to make sure that you do."

The Outcome

Parents believe their initial impressions were accurate and that the ISSP model does not deliver on its intention. Initial promises of school staff and the wording of the policy established a false hope that the system would accommodate vulnerable children and give them the support they required. Early in the collaborative process parents discover they have been misled by a policy, which they feel, rests on language more than sensitive pedagogy. The disappointment this brings and the inability to move beyond token support result in a sense of hopelessness for parents. The system is viewed as being both unable to deliver on an ethic of caring and unwilling to work towards change. Parents see their efforts of change as being in vain, growing increasingly pessimistic that care can ever be dictated by policy.

It is only by moving into a sense of disillusionment and futility of trying to change the system that parents discover their own power within themselves. This disillusionment with the system brings parents to a place of creating supports by themselves. The game is played so that they have access to the players, and awareness of the school program that allows them to be strategic in their intervention. Emotions are laid aside and energy is focused on "winning" for their child.

Some days I think I'll win. Some days I don't. You can't think that. You can't wonder if you'll win. You have to believe you will. You focus on his strengths and you fight. It is such a game. Crazy, ludicrous in fact, but you have to play it.

Disillusionment extends beyond the ISSP process to include the education system as a whole. The school is seen as being a closed system, where teachers look out for themselves. It is a system that is seen as being too big to change, too rigid to bend, and too large to care about an individual child. Parents view it as having a rigid black or white rule system with which all children must comply, regardless of need. This message is received loudly through practices such as frequent suspensions of the child (in grades as early as primary school) for displaying their compulsive behavior. Parents interpret this as a clear message that his/her child has to fit into a system that will not adapt to accommodate him/her. It becomes yet another example of how much their initial relationships with the school have changed. The full acceptance their child received before diagnosis is now juxtaposed against being told that he/she cannot attend because of his/her condition. An acceptance of "individual differences" is outlined in the policy but not reflected in their experiences. Parents view the primary goal of the ISSP team as supporting the child in the learning environment of the school community, yet the practice of suspensions continuously removes them from this environment.

One principal warned, "This is how we do things around here". When another student assaulted my son, he was given a three-day suspension, while my son was given ten detentions for starting the fight. I proved that he never started it and the principal said, "Okay, then eight detentions". A few months later another incident happened when a group of kids were taunting him in the morning and he walked away but of course they followed. Finally [son] turned and told them to F- off. He was given a three-day, out of school suspension and twenty-five paragraphs to write, actually copy, because the principal composed it and he had to copy it. It was like a confession. I was very concerned about the severity and challenged the principal on it, saying that it was much more severe than the student who assaulted him received. He said that I had challenged him on the ten detentions and he wasn't going to give in on this one, that I expected my child to be treated different. I said that yes, I did expect him to be treated different because he is different. He isn't like everyone else.

Parents interpret this as being a powerful message of "you don't belong here". The earlier the message comes the louder it is heard and the faster it brings disillusionment. The faster disillusionment comes, the quicker parents are to become strategic in their efforts to help. The earlier they begin strategizing, the more skill they acquire. This process of double-gaming further divides parents and teachers and deepens the fractures that are growing in this collaborative planning process. The practice of parenting, with its unconditional love and attunement to needs, is contrasted against the practice of teaching, with its focus on goal attainment in a structured, equitable environment. Parents have long given up hoping they can change the system or that care will automatically appear one day. This letting go of the struggle, this acceptance of the model's failure, this acknowledgement of their aloneness brings a sense of personal stability and strength. By being forced out of the space between parents and teachers, mothers discover their individual power. It might be a strange path towards empowerment but it is indeed effective in the help that it gives the child.

One mother whose child was diagnosed while still in primary school demonstrated this. She related countless experiences of suspensions and frustrations so overwhelming that she actually changed schools three times in her son's first four grades. Observing at the ISSP meeting for her child was radically different than the meeting discussed earlier:

In explaining why she had become so involved in both her son's program and the parent group, the mother's response speaks to the essence of the outcome of this process:

I don't miss a support meeting and I totally empathize with what I hear. I know I would be telling the same story if I had stayed in either of the previous schools. Since I started chairing the meetings my experiences have changed. In fact, other parents can't believe that I am actually the manager of his program. They ask how I got that role. My response is I took it. I hold the school accountable now. If they say they will do something I make sure they do. I call them at home if I have to. I still get sarcastic comments like they need a big table for meetings with me, but I ignore that. No one will ever make me feel as bad as I did when he was in primary school.

Implications

This articulation of parents' experience is validated by much of what has been previously identified in the literature: the breakdown between written and enacted policy (Able-Boone, 1993; Armstrong & Barton, 2000; Fulcher, 1989; McDonald, 1981); the many inequities and power differentials in the planning process (Goldstein, et al., 1980; Quiroz et al., 1999; Rock, 2000; Turnbull & Turnbull, 2001; Vaughn et al., 1988); the limited understanding of a true philosophy of inclusion (Gale, 2000; O'Brien & O'Brien, 1996; Slee, 2001); the absence of an ethic of caring (Noddings, 1992; Sergiovanni, 1994); and the overuse of language (Danforth, 1999; Fulcher, 1989). This study, however, pulls us beyond this breakdown, into the world of how parents cope with such realities and onwards into the even more nebulous space of the consequence of their being forced to function in this world. While other research has discussed generalizations, this study discusses the particulars of this lived experience.

Participating in Newfoundland's ISSP process teaches these parents that they have a marginalized role within a system they perceive as being oppressive. They see the language-dominated policy as a mask that attempts to portray a caring and child-centered system that does not exist for them. Parents view this nexus between their experiences and the language of the policy as a prioritization of perception over care. The disillusionment this brings places them in opposition to teachers, yet with a resolve to continue in their attempts to help their child. Such determination, against what seems to be incredible obstacles, speaks to the essence of parenting and nurturing.

While interagency case planning has been viewed as a model towards greater empowerment of the client (Raif & Shore, 1993), these findings identify that little is changed with interagency approaches. Ironically, a model that espouses role parity and equality creates clear divisions and conflicts in which the needs of these children get lost and forgotten. Realizing they are now standing on contested ground in a system that oppresses, these mothers display skill and determination to be victorious in helping their child and by doing so display a sense of personal power that the model failed to provide. A need to protect and nurture compels them to understand the system, become experts on their child's needs and then strategically use their knowledge to support their child. In doing so, they stumble into a sense of power to (Wartenberg, 1990). As one mother powerfully illustrated, power and leadership can be taken back.

The entire process has been disempowering. I have felt guilty. I've felt humiliated. I've felt embarrassed. I've felt like walking in there with a bag over my head. I've felt desperate and completely at their mercy.

It is no coincidence this mother used the past tense to describe her myriad of emotions for we, like her, have discovered that action does indeed come from thwarted hope. However in accompanying these parents on this journey, in traversing this contested space and listening to their experiences we become challenged to derive our own meaning from it. We are left to wonder what the experiences of parents would be in a system that embraces its "ethic of caring" (Noddings, 1992) and works to create a school community that values diversity and recognizes the inherent worth of individuals (Gale, 2000; Sergiovanni, 1994; Slee, 2001). Van Manen (1997) discusses these challenges that phenomenology brings to the reader by writing:

And so to become more thoughtfully or attentively aware of aspects of human life which hitherto were merely glossed over or taken-for-granted will more likely bring us to the edge of speaking up, speaking out, or decisively acting in social situations that ask for such action.... (p.154).

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Submitted by

David Philpott
Memorial University, Newfoundland
Email: philpott@mun.ca

Author Biography

David Philpott joined the Faculty of Education at Memorial University on 2000, (http://www.mun.ca/educ/) following an eighteen year career in special education. He has extensive experience in program development and individualized planning and has taught at all levels of the K-12 system. Additionally he has served in numerous leadership positions at the district, provincial and national level and has served on the Board of Directors for The Canadian Council for Exceptional Children and the Canadian Counseling Association. His interests are program development, inclusive education, collaboration and learning disabilities. Dr. Philpott is also a member of the IJDCR Editorial Board.

International Journal of Disability, Community & Rehabilitation
Volume 2, No. 2 Canada
www.ijdcr.ca
ISSN 1703-3381