STORIES FROM THE FIELD:
Special Parents, Children, and Schools
By Jacque Williams, Ed.D.
Introduction by Peter Senge and Art Kleiner:
Inclusion in schools is not just a matter of formal admissions. Especially for students with disabilities, everything has to do with the culture and conversation: with the ways in which students and their families are made to feel welcome. Jacque Williams has dedicated her career as an educator to realizing that kind of inclusiveness in everyday practice – specifically, in the domain of special education.
Jacque is the assistant superintendent of the West San Gabriel Valley (WSGV) Special Education Local Plan Area (SELPA) in Los Angeles County. (There are more than 120 SELPAs in California, in a system of special education support that was started in 1977.) She provides guidance and support for the special education administrators in 14 California public school districts; these are the people who design and oversee the Individualized Education Programs (IEP), which determine what kinds of support children need, based on their disabilities.
The COVID-19 pandemic, with many schools under lockdown, has been particularly challenging for students receiving special education services and their parents. It also stretched the teachers and administrators, who had to help families of students with disabilities suddenly confined at home.
When the pandemic struck, Jacque was already in the master practitioner course at the Center for Systems Awareness. She was also one of three SELPA leaders overseeing a shared System Improvement Lead (SIL) award: a five-year, $30 million grant for using evidence-based practices to improve outcomes for these students. As one of the first steps, she is organizing ongoing groups for administrators like herself to develop their own systems leadership capabilities and inner resources, and to then bring them to teachers, students, and families of students with disabilities. At the first such meeting of administrators, 80 people attended.
In this article, Jacque describes another group she has organized: for parents of students with IEPs. These are prototypes for the kinds of groups that could help parents of students with IEPs everywhere, drawing on the personal and organizational practices of compassionate systems leadership.
As you’ll see, Jacque’s perspective reflects her own story. She was treated as a problem student, and dropped out of high school. She drifted, ultimately earned an GED (adult) diploma, and became a first-generation college student in her late 30s – first at a community college, then at a state university, and ultimately at the University of California Riverside, where she earned a masters degree in school psychology and recently completed an Ed.D.. Her vision, she says, is “to see a systemic change in the way we support children with disabilities and their families.”
Special Parents, Children, and Schools
Every school meeting should be a safe space. But reality today for parents of students with IEPs – especially if they are struggling with homelessness, addiction, or daily life in a marginalized situation – isn’t like that. A meeting with school administrators can be difficult and at times traumatizing. In one case in the early months of the COVID-19 lockdowns, an IEP meeting went on for six hours before the child’s mother broke down, sobbing. This was an Individualized Education Program meeting, set up to provide the help and support she needed for her child to receive the necessary supports and services to meet their IEP goals. .
The educators could have summarized the reports and sent her the summary before the meeting. Instead, they read each one and discussed it, showboating, repeating their judgments, as if she had no choice but to sit there and take it. Later, when she described the ordeal to a sympathetic small group of fellow IEP parents, she could barely stop sobbing.
This type of experience is not typical in our schools, but it happens sometimes – and under the stress of the pandemic, the relationships between schools and parents were more likely to break down. When public schools closed in California in March and April 2020, while all families were affected, less-advantaged families with students receiving IEP services were hit particularly hard. We have some extreme wealth in our SELPA, but there are many families whose children receive free and reduced-cost lunches. And of the 86,000 students in this area, about 10,000 have an IEP.
Suddenly, parents of students with IEPs were also their children’s teachers at home: a role which no one had anticipated and few of these parents were prepared for. Some of them saw their kids slipping or getting upset. They also had to navigate obscure and sometimes contradictory sources of information about what resources and services they could expect from their public school during the lockdown. They needed a different kind of support than they had needed in the past. Most of all, they needed to be heard.
Establishing a New Rhythm
At the time, I was attending the master practitioner certification program at the Center for Systems Awareness. I had also been leading a group called the Community Advisory Committee (CAC), for about seven years. The CAC consisted of two designated parents of students with disabilities, representing each of the 14 school districts I worked with. We met 10 times a year, typically, to discuss new rules and how to help other parents find the resources they need.
After the pandemic started, some of the parents started to reach out to me by phone. “Jacque, please help me,” they would say. “The school’s not responding and I don’t know what to do!” Or they would have children with autism or low cognitive functioning, and these kids were struggling with being out of school, and the parents could not manage their kids’ severe behavior. There are so many silent battles going on every day in these families; the weight can be so heavy.
So I introduced another type of session: a voluntary gathering by Zoom in which we would mutually support our personal journeys and emotional well-being. I scheduled these gatherings for every other week, conducting them on my own time. All parents were invited to attend. We also started offering parent-focused workshops on some Saturdays. Any parent in the SELPA plan area is welcome; invitations have spread by word of mouth, and typically a dozen people may show up.
I usually open our meetings with breathing and checking in – in which each person talks about what they are feeling right now, without interruption. That could go on for most of the meeting. In most check-ins, you’re supposed to discourage people from responding directly, because the whole group can get sidetracked. But in these cases, I encouraged people to respond to each other, because of the sense of empathetic distress. It’s hard for many of us to keep silent when we hear that others are hurting. At the meetings, I also introduced people to some forms of meditation and visualization, and conceptual models like the systems thinking iceberg, to give them the internal resources they need to handle their overwhelming challenges.
We also try to help solve problems, in a way that others can learn to do as well. When the parent spoke who had been at the 6-hour IEP meeting, I connected her with a SELPA-supported dispute resolution professional, free of charge. “You can trust him,” I said. “Have him go with you to the next meeting – and if it goes on more than two hours, just walk out. The second you leave, the meeting is over.” That context was important; rightly or not, it’s difficult for many parents to trust a school official they haven’t met. In this case, the parent came back to the group after her next IEP, to report that she had worked on her breathing before she went in; that she had kept herself grounded through the meeting; and that the advocate, there with her, had insisted it would only last an hour. She came out of it with a much better idea of what the school would do for her child.
All the parents have their own stories to tell. Some have children who are difficult to manage, and the parents feel overwhelmed. Some have multiple children with IEPs, and they have to manage the schooling for all of them at home. Some are divorced, and this makes it hard to keep up with the state and federal laws. The Dad might sign one form and the Mom might sign another, and the forms contradict. Some people simply need a bit of time and space; they have nowhere else to talk. We all help each other reframe our issues so we can talk about them in more constructive ways.
The exercise people like most, so far, is an elevator visualization. Imagine yourself in an elevator leaving the top of your mind, stuffed with thoughts and feelings. As you exhale, the elevator goes down to the ground floor. When it gets there, you imagine kicking out all those negative elements. They were cracking up: “I’m kicking out my nasty neighbor! I’m kicking out that anger!” I would encourage them all to just let go, and kick them all out!
The meetings also cover self-care: how to express needs and advocate for their children without getting upset. We talk about what happens if you don’t ground yourself at a school meeting: how it can impede the flow and lead others to dismiss you. For those with high-needs students at home, who might be aggressive or hard to deal with, we talk about taking time to breathe and calm down, maybe walking out to the backyard. Because of the care I take with the way the meetings are organized and my own behavior, people seem to trust them and are willing to open up.
Getting Beyond the Obvious
In compassionate systems leadership, gatherings like our parent sessions are sometimes called “containers.” It takes conscious design to set the boundaries of a conversation so that people feel safe. If more people knew how to do this, I believe this approach could become a way of life in special education and more broadly in schools everywhere.
I take care to be candid about my own troubled background. I understand what it’s like to grow up with homelessness and addiction. I have lived in a Datsun B210. I went to 14 elementary schools, two junior highs, and five high schools. In each new school I tried to make friends by being the class comedian. I remember being shamed by one science teacher, who told the classroom that I needed special books because I could not keep up. I told him where to put his books – and before he could send me to the principal’s office, I said I already knew the way there and stormed out. Until I started community college at age 39, I had no idea what higher education was or that I was capable of learning.
As I proceed with the systems leadership work and the SIL grant, one of my goals has been to raise the quality of my own leadership. In the past, I have struggled with empathetic distress: an overwhelming emotional response to the suffering of others. I can relate so easily to the stories that parents and kids tell about the systems failing them, that it gets in the way of providing real help. I’ve learned to make protecting myself and my emotions more of a priority. As I gain more internal peace about my own life experiences, I become more capable of sharing that peacefulness with others.
One example of the potential of these sessions is the Iceberg model of systems thinking. This is an alternative to the typical behaviorist model that many educators use with special education, shown here on the left side of the diagram. They look at each incident as a single event, and analyze its previous similar cases (antecedents) and outcomes (consequences). It’s more helpful to look at all these behaviors as visible events, “above the water line.” Beneath the surface, there are patterns of behavior, underlying structures, mental models (deeply embedded attitudes) and artifacts like formal policies and procedures. These are the root causes of the problem. If you want the behaviors to shift, you need to change some of the deeper aspects, below the surface.
So, for example, if a child does something difficult, the parent can ask: How often does this happen? What are the systemic causes that trigger this and cause it to happen? What do the mental models tell us – in other words, what does the parent think, what does the child think, and what attitudes do the teachers have? You may think your child is doing this because of some specific trigger, but it may not be the case. Looking at the deeper system and the mental models, you can more easily ask: How could we change this?
The iceberg can also be used to help kids who have difficulty expressing themselves. Supposed you’re in a classroom, and Sally’s having a bad day. We show her an iceberg image. At the event level, we ask: Why are you so angry? What happened today? Sally, or the teacher, could write it down. Sally could color the image, with colors or simple faces – happy faces, sad faces, angry faces — representing different emotions. Maybe she’s frustrated because she was grounded from watching TV; and now she’s acting up at school. This discussion can help her get this message across.
Regular events like IEP meetings could also be transformed with a more compassionate, facilitated agenda. I’ve been in some emotionally jagged meetings. But if they started with everybody checking in with one another, we might be reminded that everybody wants what’s right and best for the child. That in itself could help create a safe space.
All of these possibilities exist, and they’re waiting for a few more people to step in and help others realize them. I’ve seen the possibilities in our own small parent group. The participants are feeling more capable. They are using the breathing and grounding exercises. They are getting the resources they need, and having less frustrating times. When they are frustrated, they know they have people available who will listen and help them – not just one or two people, but everyone in the group. These may seem like small steps, but they build up, day by day, so that life in the school system becomes a little bit better for the students with IEPs, for their parents, for the educators themselves, and for everyone else affected by the system.