In the second episode of Journeys in Healthcare from a Youth Perspective, Alissa shares about her experience with multiple healthcare needs. From getting diagnosed with asthma as a baby, to getting diagnosed with chronic depression and anxiety, panic disorder, and selective mutism in second grade. Then later in high school Alyssa got diagnosed with Autism. In this video Alissa shares about the barriers she faces daily and what she learned from her experience and would like to share with others experiencing similar barriers. Follow Family Voices of Washington to see more interviews with youth with special healthcare needs share their story.
A Brief Overview
- Behavior specialists generally agree that difficult behaviors arise from unmet needs. How adults respond is critical if a child is going to learn new ways to communicate.
- Humans spend about 80 percent of their brain energy trying to belong. This can explain a lot when a child with a disability feels isolated or unwanted and starts to act out.
- Positive Behavior Interventions and Supports (PBIS) is a framework that a growing number of schools nationwide are using to improve school climate, which refers to the way a school feels to students and staff.
- Members of the U.S. Congress discussed PBIS on February 27, 2019, when a committee heard public testimony regarding a bill that would regulate use of isolation and restraint in public schools. Positive behavior interventions are considered “protective” by behavior experts, and there is evidence that isolation and restraint cause trauma.
- Read on for questions families can consider when they are trying to understand what’s happening with a child and how to intervene for the best outcomes.
Families and teachers often struggle to figure out what to do when a child’s behavior at school is getting in the way of learning. How adults respond to unexpected behavior can impact whether an incident leads down a path of worsening problems or toward improved learning. Parents can help by understanding as much as possible about what the child might be trying to communicate or overcome.
“Difficult behaviors result from unmet needs,” says David Pitonyak, PhD, an educational consultant, author and public speaker who specializes in behavior supports for children with disabilities. Pitonyak speaks nationally and provides a variety of online tools to help families and educators.
One example is a free, online presentation, “All Behavior is Meaning-full.” In it, Pitonyak includes a list of what might be missing when an unmet need leads to a behavior incident:
- Meaningful relationships
- A sense of safety and well-being
- Things to look forward to
- A sense of value and self-worth
- Relevant skills and knowledge
“Supporting a person requires us to get to know the person as a complicated human being influenced by a complex personal history,” Pitonyak says. “While it is tempting to look for a quick fix, which usually means attacking the person and his or her behavior, suppressing behavior without understanding something about the life the person is living is disrespectful and counterproductive….
“Our challenge is to find out what the person needs so that we can be more supportive.”
A running theme in Pitonyak’s work is that adults need to strengthen their own social and emotional skills in order to effectively help children. He often quotes another specialist in the field, Jean Clark: “A person’s needs are best met by people whose needs are met.” In other words, parents and teachers need to practice self-care and regulate their own behaviors and emotions to provide the best examples to children. Read on for a check-list that adults can use to develop their own skills while they help children.
A brain’s biggest job is to belong
Pitonyak is among specialists who believe that children act out because they feel misunderstood, devalued, lonely or powerless. Other growing themes are the importance of belonging and the human need to contribute meaningfully to a social group. Neuroscientists have found that humans spend about 80 percent of their brain energy trying to belong. This can explain a lot when a child with a disability feels isolated or unwanted and starts to act out.
Parents can use these concepts in a variety of ways to participate in their child’s educational program. Here are examples of questions to ask in any meeting with a school:
- Who are the adults at school that my child trusts?
- Does my child have special jobs or responsibilities, so he/she feels important at school?
- Is someone regularly checking in with my child to see what’s going on?
- How are positive behavior skills being taught and reinforced?
Positive Behavior Interventions and Supports (PBIS) is a framework that a growing number of schools nationwide are using to improve “school climate,” which refers to the way a school feels to its students and staff.
Schools that embrace PBIS generally create programs to help all students participate in well-being and then offer more targeted social, emotional and behavioral help to students who struggle the most. These different levels of intervention are called Multi-Tiered Systems of Support (MTSS). According to the federal PBIS website, “PBIS improves social, emotional and academic outcomes for all students, including students with disabilities and students from underrepresented groups.”
Information about federal guidelines and programs related to PBIS and MTSS are available online from the U.S. Department of Education’s Office of Special Education Programs (OSEP) and the Office of Elementary and Secondary Education (OESE). PAVE provides an article about PBIS, with parenting tips by Kelcey Schmitz, a longtime MTSS expert who previously worked for OSPI and now is part of the University of Washington’s School of Medicine and the School Mental Health Assessment, Research, & Training (SMART) Center.
PBIS is a protective strategy
The United States Congressional Committee on Education and Labor received training about PBIS on February 27, 2019, when they heard public testimony (YouTube video): Classrooms in Crisis: Examining the Inappropriate Use of Seclusion and Restraint Practices. Congress is considering legislation that would create a federal standard on accepted practice, accountability and training for teachers who might use isolation or restraint in an emergency.
National Public Radio reported about isolation and restraint in a June 5, 2019, broadcast that included personal comments from two families in Vancouver, Washington.
The State of Washington allows isolation and restraint by trained school staff if a student’s behavior poses an imminent threat of serious bodily harm. PAVE’s comprehensive article about discipline at school includes more information and resources about isolation and restraint, which is described by state law as an emergency response and not a form of disciplinary action.
Among those who provided public testimony for the U.S. Congress was George Sugai, PhD, professor of special education at the University of Connecticut who was a key developer of the PBIS framework. At the public hearing, Sugai spoke about the reduction in trauma among schools who embrace PBIS. He said teachers report more positive feelings toward their work and that students show more progress toward specific educational goals. “PBIS is a protective strategy,” he said.
The behavior itself holds the clues about what to do next
Sugai, who holds a Master of Arts and a PhD in special education from the University of Washington, spoke about understanding a child’s unmet needs. “We have to understand what children are communicating through their behavior,” he said. “The behavior itself holds the clues about what to do next.”
Washington’s Office of Superintendent of Public Instruction (OSPI), which oversees the state’s school districts, has a variety of programs underway to address school climate and improve staff training in Social Emotional Learning, equity in student discipline and development of Compassionate Schools. The state encourages use of a Behavior Intervention Plan (BIP), which promotes positive support and skill-building for expected school behavior. The plan is to prevent the need for disciplinary action or emergency response. A BIP is developed with data collected through a Functional Behavior Analysis (FBA), which is a best-practice tool for schools to figure out what help a student with challenging behavior might need. OSPI’s website includes examples of the FBA and BIP in its Model Forms.
OSPI’s family and community liaison, Scott Raub, partnered with a special services director from the Puget Sound’s Educational Service District 121 to create a slide presentation about isolation and restraint that is available as a free, downloadable PDF. The document is titled, Stop Using Restraint and Isolation: An Evolution or a REVOLUTION? The presentation includes specific guidance for school staff to use a Behavior Intervention Plan (BIP) as a strategy for managing behavior. A flow chart shows how early intervention might diffuse a situation to allow a student to remain in a more regulated state and stay in class. The document also provides detail about recent OSPI rulings about isolation and restraint raised through the Citizen’s Complaint process.
In accordance with the Revised Code of Washington (RCW 28A.600.485), “Restraint or isolation of any student is permitted only when reasonably necessary to control spontaneous behavior that poses an imminent likelihood of serious harm. Restraint or isolation must be closely monitored to prevent harm to the student, and must be discontinued as soon as the likelihood of serious harm has dissipated. Each school district shall adopt a policy providing for the least amount of restraint or isolation appropriate to protect the safety of students and staff under such circumstances.”
In the slide presentation, designed for schools and publicly available, OSPI provides detail about what “imminent likelihood of serious harm” can look like and provides direct guidance to staff, including these statements:
- Emergency Response Protocols are NOT a substitute for BIPs.
- BIPs must be updated as part of student’s annual IEP [review].
- The time to end isolation and restraint is as soon as the likelihood of serious harm has dissipated; this is not equivalent to waiting until the student has calmed.
A state workgroup to study Social Emotional Learning (SEL) in October 2016 proposed a set of Standards and Benchmarks to help school staff identify how best to help children who struggle with their behavior, social skills and emotional regulation. The group established six standards with specific benchmarks. A report from that workgroup includes a chart of the standards (Page 3). Families can share this information with schools when trying to identify what’s happening with a child and what interventions might help.
Below is a brief overview of those SEL standards and a few questions parents can bring to the table. In each target area, parents can ask what school staff are doing to help. This check-list also can be a good starting-point for adults who want to work on their own emotional regulation and coping strategies.
- Can the student identify and understand emotions?
- What is the student good at or interested in?
- How are family, school and community agencies helping as a team?
- Can the student express emotions and manage stress constructively?
- What problem-solving skills are in place or need to be learned?
3. Self-Efficacy (self-motivated/seeing self as capable)
- Can the student understand and work toward a goal?
- Can the student show problem-solving skills?
- Can the student request what he/she needs?
4. Social Awareness
- Can the student recognize another person’s emotions?
- Can the student show respect for others who are different?
- Can the student accept another cultural perspective?
5. Social Management
- Does the student have ways to communicate?
- Can the student take steps to resolve conflicts with other people?
- Does the student have constructive relationships with a variety of people?
6. Social Engagement
- Does the student feel responsibility as part of a community?
- Can the student work with others to achieve a goal?
- Does the student contribute productively and recognize his/her contribution?
PAVE provides a series of three articles with more information and resources about Social Emotional Learning (SEL).
Many parents struggle in their communications with the school when a child’s specific disability and its impact on behavior is not well understood. A place to research specific disabilities related to mental health, such as Oppositional Defiance Disorder (ODD), Attention Deficit Hyperactivity Disorder (ADHD) or Disruptive Mood Dysregulation Disorder (DMDD) is the Child Mind Institute.
A resource for better understanding how children might behave in response to trauma or Adverse Childhood Experiences (ACEs) is the Children’s Health Foundation.
An agency called GoZen offers an online article about Eight Ways a Child’s Anxiety Shows up at Something Else. Included in the list: difficulty sleeping, anger, defiance, lack of focus, avoidance, negativity, over-planning and “chandeliering,” which refers to a full-blown tantrum that seemingly comes out of nowhere. In addition to its free online articles, GoZen provides fee-based programs on resilience.
From the youth perspective!
Recent High School graduate – Hannah would like to share her story through three poems. These poems focus on Depression,
Bipolar Disorder and Bullying.
Thank you for taking the time to listen to them!
Below are her poems in the order they are presented:
A dark void,
A black hole of life,
A life with depression is,
A dark pit,
A never-ending torture,
Depression ends when,
Fun returns …
What is Bipolar
But what is it,
What is it like,
Is it a disease,
Is it a bad thing?
A bad person,
A hateful burden,
No, it is not,
It is a mental health disorder,
A mood disorder,
One minute you are happy,
The next you are not,
You go up and down,
Just like a roller coaster,
Up and down,
Up being happy and/ or manic,
Down being sad and/ or depressed,
For some anger is not anger,
Real anger is silent,
Hide who you really are from the world,
So, no one knows you are bipolar,
The misconceptions and biases keeping you hidden,
For they are an unbroken lie,
An unstoppable lie,
For those who can fight,
Fight for those who cannot,
Helping those who can,
Making the dark black and gray sky,
Bright and blue again…
Never Give Up
Why they all said in unison,
How could he do that to you,
Wait a minute,
You are just messing with us,
My facial features change to peer rage,
Thoughts came racing in,
All of a sudden, their faces change to peer fright,
They start to back up,
But I was not going to let them leave without an explanation,
I yell STOP,
And sank in to their seats,
Still and quiet,
I calm myself,
I start an explanation from the years before to the years after,
Their eyes widen us my words hit close to home,
Changed them forever,
Those powerful thing,
As l got to the piece about love,
The room was in tears,
From that day I told the bullies my heart-breaking story,
To now as I tell my story to a room full of people like me,
I tell over and over,
It gets a little easier each time,
I write a book,
I go to college,
And most of all I have family,
All of my family,
Yes, we are split in two,
But I can see him,
I can talk to him,
I can be with him,
That thing that can destroy or create,
The thing that can start wars,
And topple governments,
It can save lives,
Or destroy them,
Love the most powerful force just before words,
As I finish my speech of my life,
At the last second, I decided to add a hopeful comment,
Just because life is dark now does not mean it will always be that way,
You are not given a destiny or a purpose,
You make your own,
The comment that my mother gave me during a dark time in my life,
I know it was not the exact comment,
But it was close enough to it,
To bring hope in to a roomful of people who really need it,
So maybe one day they will be able to tell their life story to those who need it,
All it takes is one who is willing to fight their fears and fly,
Fly higher than ever before,
To feel the release of pain,
To feel free,
And to help those who just need a friendly face to talk to,
As one-story ends,
Another will begin …