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April 1, 2017
Vol. 74
No. 7

IEP Meetings: Building Compassion and Conversation

Can IEP meetings get past the labels and diagnoses, and reaffirm the humanity parents see in their children?

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It's that time of year!
No, it's not a major holiday when school hallways and bulletin boards are decorated with colorful posters. It's IEP time—when students, their family members, and educators sit around a table to review individualized education plans; to share experiences, progress, test results, and insights; and to plan for the upcoming year. It's often a time of mixed emotions: anticipation, celebration, and creativity, but also worry, frustration, and sometimes even dread.
Both of us know this process well from personal experience. Janice is a social worker and a leader and advocate in the disabilities field, as well as the mother of Micah, a 32-year-old person with intellectual disability. Emma is an inclusive elementary teacher, Janice's daughter, and Micah's sister. Our combined experience gives us a unique lens through which to view the IEP process. Here, we recommend ways to encourage meaningful, reflective, compassionate, and goal-oriented IEP conversations.

Janice's Recommendations: Understand the Family's Perspective

When I first learned that our toddler son Micah had a disability, I knew in a general sense that my husband and I would face new and unfamiliar challenges as parents and as human beings. What I didn't anticipate was that the partnership with the professionals who supported Micah could sometimes be more challenging than having a child with a disability. That realization hit me like a ton of bricks at our early IEP meetings. How could that be? Here we were at the table, well-meaning people who all wanted to support the growth of a child, yet the relationships felt uncomfortable, awkward, and stiff. Most meetings began with the good-will claim, "We're all partners today." And yet … sometimes, I felt like a visitor, an intruder, a nonmember.
I recall sitting at the table, trying hard to remember everyone's name and their roles, wondering what they thought of me as a parent. I worried that they might not see Micah's strengths and gifts. I wasn't sure exactly what the team wanted from me. I listened intently, trying to make sense of what each person was saying, but my ability to truly listen was sometimes clouded by my worries or unfamiliarity with the jargon and paperwork. It all felt so formal and unfamiliar.
Hoping to find some insight after one troubling meeting many years ago, I searched the dictionary and found this definition of partner: two or more people dancing together. Yes, I thought—the IEP planning partnership is exactly like a dance. Initially and during difficult times, our movements as partners can be awkward—almost like an uncomfortable middle school dance characterized by self-consciousness, feelings of ineptness, and limited trust. Toes—and feelings—get stepped on as we stumble through unfamiliar or conflicting rhythms (Fialka, 2001).
At times it almost feels like a slamdance, as challenges are discussed, unexpected tears pool in our eyes, tension mounts, and differing views become apparent. Other times, it's as if we're listening to totally different songs. One partner might be dancing to a hip-hop beat, another a tango, and still another a waltz.
No wonder the IEP season isn't always met with high hopes and positive expectations. On the other hand, there are those cherished times when the partnership is working well, when the conversation flows and the ideas match as we glide gracefully into meaningful and mutually agreed-upon goals.

Build a Deeper Partnership

One way educators can strengthen the partnership is to deepen their understanding of families' perspectives and their awareness of one important issue: choice. Most educators have made a conscious choice to be at this dance. They're eager to share their insights and carefully thought-out ideas. They might be thinking, "I'm excited to share what I know. Let's go!" When families or students don't respond with the same enthusiasm, educators may feel baffled and even secretly judgmental.
What educators need to understand is that, although families care deeply about their child, they didn't have a choice about being in this partnership. Consciously or unconsciously, families may think, "I didn't chose to be here with all of you at this table. I'm not so sure I want to be in this world of special education, labels, and forms." It's normal for families to feel hesitant about joining in this dance. They may seem unengaged or appear like they're just fulfilling a requirement during IEP meetings. They often need time and compassion to make sense of the life-changing news that their child has challenges and may need a lifetime of supports, accommodations, and modifications.
I remember one life-changing meeting when the team listed numerous labels assigned to Micah—neurologically impaired, seizure disorder, sensory integration dysfunction, fine motor delay, cognitive impairment, and a host of others. My husband and I sat silent, stunned, and sad. I remember wanting to cry out, "Give me back my son, untouched by your labels and test results. I want my son back."
It was apparent that no one on the team knew what to say to us. Finally one of the therapists gently made eye contact, nodded softly, and respectfully acknowledged that hearing these words, these labels, wasn't easy. She then offered a thought that helped us reclaim our child: "Micah is still the same amazing boy he was before all of these evaluations." She listed a few of his abilities, including his charming smile and persistence. "These labels, though hard to hear, don't take away the Micah you know and love." She reminded us that we would have a range of feelings, and that this was normal. She offered to follow up in a phone call to check how we were doing and to answer any questions. She ended with, "We are going to be with you during all of this. We will work together and support Micah and your family."
As Micah's parents, we weren't always appreciative or welcoming of the labels used at the team meetings when we received life-changing news. But the most helpful educators listened and didn't rush us through our feelings.
A sensitive and kind way for educators to deal with families who appear distant or unengaged is to resist personalizing the family's reluctance or withdrawal. The family's reaction is typically not about you, the educator. It's about the situation—a situation that the family did not choose. At the core of the reluctance might be worry, fear, and even guilt or shame. Families may need more time and more opportunities to build trust with the team. You can develop that trust over time through courageous conversations, dependable follow-through, and deep listening.

The Importance of Listening

Families' and educators' priorities may differ because of their different perspectives and roles. Returning to the dance metaphor, it's as if we each have our own earbuds in, listening to our own music. Each partner at this dance brings his or her own priorities, perspectives, and preferences to the conversation (Fialka, Feldman, & Mikus, 2012). For example, the speech therapist might be most concerned about the student's dysfluency, the mother might be most concerned about her child's lack of friends, and the general education teacher's priority might be helping the student complete specific academic tasks.
A key aspect of a planning meeting is to ensure that each perspective, especially the family's, is discussed in detail. Educators need to take off their earbuds and listen to the family's music, asking open-ended questions that encourage the family to share what they value and hope for: "Tell me more about your ideas. What are your dreams for your child? What are the student's dreams? What do your worry about? What keeps you up at night? What supports have worked well in the past? What are your child's gifts?"
This approach requires intention and attention on the part of educators. It requires discussion rooted in genuine, nonjudgmental curiosity. Educators who are strong problem-solvers often unintentionally rush to solutions. The desire to "fix it" can, at times, interfere with listening and obtaining a fuller picture.

Emma's Recommendations: Replace Jargon with Conversation

When I started teaching and attending special education meetings, I held onto my mother's words about the frustration she and my dad experienced during some meetings about Micah. I also held onto the voices and wisdom of instructors in my graduate education courses, who discussed how IEPs could be essential tools for individuals with disabilities and for the educators who work with these students. Unfortunately, IEP meetings are often a mix of too much jargon and report reading, and not enough listening, goal setting, and dreaming.
We developed the "IEP One-Pager" to help educators structure IEP meetings that honor the concerns and needs of the family. It's a simple, brief report that groups information into five categories:
▪ Things the student can do independently.
▪ Things the student is beginning to do.
▪ Things the student can do with support.
▪ Key accommodations used in the classroom.
▪ Areas of focus for the next few months.
Here's how I use this tool.

Getting Prepared

A few days before an IEP meeting, I review the student's work, the professionals' observational notes, and data collected on the student's IEP goals. I consider the five headings on the IEP One-Pager and provide two or three specific examples for each heading. Using only one page, I attempt to capture the essence of the child. (See a sample One-Pager.)
This review helps me become more confident, better prepared, and clearer about the stories I want to share with the family and specialists at the meeting. I insert photos of the student at the top of the form, and suddenly I see him (or her) animated and alive in my classroom.
The form shows him "engaging in play with his peers" and "reading new books." You can feel the pride the child feels in "writing sentences with details and correct sentence structure." It requires careful thinking and patience to discover examples for each heading and keep the information to one page, but the result is a relevant, meaningful, and less overwhelming way to engage families and other team members in the conversation.
I might also send the family a blank copy of the One-Pager before the IEP meeting and invite them to think about their responses to each of the categories. Family members who can't attend the meeting can share their ideas in a note, through e-mail, or by phone. I also encourage family members to bring photos of their child to share during the meeting. Photos have a way of bringing a conversational and enjoyable atmosphere to the discussion.

During the Meeting

Here's a recent example of how I used the IEP One-Pager in a team meeting. This particular 8-year-old child has Down syndrome, and she had received limited schooling in the country from which her family had recently immigrated. Because of her unique needs, it was sometimes difficult for the child to communicate about her day with her family. I knew that during the past few months, communication between the family and school had been complicated and not always smooth. The family was not aware of the numerous staff members working with their child; almost everyone at this meeting was unfamiliar to them. It was unclear to the educators what the family understood about their child's needs in school.
We greeted one another cordially, but tensions were readily apparent in the room. Arms were crossed. Eye contact was limited.
As the team of staff and family members got settled at the conference table, each person received a copy of the One-Pager. After a few words of welcome, I explained the use of the One-Pager as a tool to give us a snapshot of the child—to get a sense of her and her work in our 2nd grade classroom. I encouraged everyone to share their ideas and stressed that I valued a relaxed conversation. I noted that we had full reports available that were longer, offered more details, and would be shared as needed. But for now, I directed them to this one page.
I pointed to the photo at the top of the page and shared how the student was beginning to engage in more risk-taking in the classroom. Her aunt shared that she was seeing this same behavior at home. I pointed to another photo that showed a sample of the student's writing of each letter in her name. Her mother, leaning closer to the photo, smiled and shared, "I'm seeing that at home too. She's been printing her name on any piece of paper she can find! It's exciting."
Then the specialists shared more comments. The occupational therapist explained how a strategy she had been using with the student supported her skill in writing numbers more confidently. The speech therapist reviewed her notes and shared data that confirmed the student's progress. Everyone was participating.
The information and observations were shared in ways that were easy to understand and invited conversation among the team. As we read through the IEP One-Pager, the family and specialists distinguished what the student could accomplish independently and what she could do with support. The emphasis was less on fixing or curing the disability than on understanding how the child was growing, where growth was likely to occur next, and most important, what supports and accommodations were needed to maintain her growth.
As we neared the conclusion of the meeting, we began discussing the next IEP goals and benchmarks. The team now had a clear picture of school and home concerns and successes, and I observed increased comfort and storytelling during the meeting. The IEP One-Pager enhanced communication and promoted partnership. An important shift took place as we moved from the typical report-giving meeting to a rapport-building conversation.

One More Recommendation: Encourage Self-Advocacy

Although there's no specific rule about when a student should start attending his or her IEP meetings, this usually takes place around middle school. The student doesn't need to attend the entire meeting; even a short time spent in the meeting can yield benefits. The student's preparation, presence, and involvement can help the team create goals that align with his or her interests and passions. In some cases, students who attended IEP meetings have demonstrated higher levels of academic achievement (Daly-Cano, Vaccaro, & Newman, 2015). Equally important is the opportunity such attendance gives students for self-advocacy, a skill and mindset that can support them for life.
Students can share their goals, successes, and supports through a short video clip or a PowerPoint presentation focused on some of the categories in the IEP One-Pager. If students cannot attend, they might complete a survey before the meeting that can be shared as a handout. Instead of seeing their disability as a source of shame or something to hide, engaged students are equipping themselves with the tools they need to confidently share their needs, learning strategies, and successes (Hawbaker, 2007).
Peers, especially those in middle and high school, can also attend part of the IEP meetings (with the permission of the student with the IEP). Peers often have a valuable perspective and are more aware of subtle day-to-day or relational issues that adults may not see. Peers can provide insight on how they have seen the student grow and offer ideas about what skills they think are important for the student to learn.
An example comes from Micah's IEP meeting experiences. Beginning in 6th grade, a couple of his peers attended the first 20 minutes of his meetings. Before each meeting, they worked with a teacher and Micah to identify his strengths, growths, emerging skills, and suggested goals.
In one meeting in 7th grade, Todd, a general education student who was part of an intentional peer network for Micah, listened to the paraprofessional discuss her concern that Micah was distracted and distracting in his science class. This wasn't a complete surprise to anyone, but what transpired next revealed the power of peers. Todd acknowledged that the science teacher, "although a really nice guy, was kind of … boring." An idea seemed to pop into his head, and he spontaneously exclaimed, "You know the difference between me and Micah? Micah doesn't know how to pretend he's paying attention." Everyone, including Micah, chuckled. Todd continued, "What Micah needs to learn is how to fake paying attention by nodding his head and looking at the teacher."
This immediately made sense to the team. Of course the team also discussed modifications to enhance Micah's engagement in the class. However, Todd had expressed an authentic truth about the ways in which people deal with moments of boredom. Peers have insights that can broaden our understanding of real life in the classroom from the student's perspective.

A More Productive Experience

That time of year, often known as IEP season, can be a welcomed moment to pause, promote partnership, and plan—if we conduct IEP meetings that value and practice conversation and compassion, setting a tone of trust and engagement. Understanding the family's perspective, listening to its music, using a friendly planning tool, and encouraging the participation of the student and peers can create a more productive experience as the team members work together toward their common goal—the well-being of the child.
Authors' Note: More resources on issues related to disability, parent-professional partnerships, and inclusion are available at Janice Fialka's website, www.danceofpartnership.com. Information about Micah Fialka-Feldman's learning journey is available at www.throughthesamedoor.com.
References

Daly-Cano, M., Vaccaro, A., & Newman, B. M. (2015). College student narratives about learning and using self-advocacy skills. Journal of Postsecondary Education and Disability, 28(2), 213–227. Retrieved from http://files.eric.ed.gov/fulltext/EJ1074673.pdf

Fialka, J. (2001). The dance of partnership: Why do my feet hurt? Strengthening the parent-professional partnership. Young Exceptional Children, 4(2), 21–17.

Fialka, J., Feldman, A, & Mikus, K. (2012). Parents and professionals partnering for children with disabilities: A dance that matters. Thousand Oaks, CA: Corwin.

Hawbaker, B. W. (2007). Student-led IEP meetings: Planning and implementation strategies. TEACHING Exceptional Children Plus, 3(5). Retrieved from http://files.eric.ed.gov/fulltext/EJ967458.pdf

End Notes

1 The words Give me back my son, untouched by your test results and labels. I want my son back are lines from a poem by the author. View a video in which the author reads this poem.

Author bio coming soon

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