Writing a Story of Resilience: What’s My Role as a LSL Professional?

Written by Jenna Voss, Ph.D., LSLS Cert AVEd

What would happen if we enter radical relationships, pursue relentless collaborations, commit to dismantling harmful systems and structures, and envision an equitable future for all children who are deaf/hard of hearing (DHH) irrespective of their race, family income, place of residence, language, gender, or social status? Examining the outcomes of the most vulnerable among us, we can see that our intervention systems have a long way to go to meet the needs of all children and families in our care.

And at a time like we’re experiencing now, a global pandemic, the inequities that have always existed are all the more apparent. Yet, as educators, therapists, practitioners, and global citizens we must remain hopeful and committed to the individual and systems change required to achieve a future where all children and families can achieve their full potential.

Now is the time to engage in honest self-reflection and open dialogue with one another—even if that dialogue takes place over endless Zoom meetings! I love books and storytelling, so keep reading and indulge my bookish metaphor.

Once upon a time…

Begin by calling to mind some of your own stories—written, shared, or otherwise—as we consider the concept of resilience. Imagine the story of a family you’ve encountered on your professional journey.

  • Consider your role: Were you the author, the main character, or a supporting player? Who were the characters (heroes and villains) with whom you interacted?
  • Consider the plot: Was this story one of defeat and despair, or that of resilience? Were there aspects of the story you’d like to rewrite? Did your story have a plot twist?
  • Consider the setting: Does your story take place in a metropolitan, suburban, or rural community? Does the story involve a global pandemic? Does your setting include high-speed internet access, sufficient home technology, and professionals ready to tap into those resources?

 

Those children and families who enter our systems at the desired time and are able to access the many resources available, and who can afford the privileges of early communication access and early access to qualified professionals with the knowledge and skills needed to support them, leads to happy endings.

I’ll challenge you to consider a more nuanced plot and setting than the ideal, as this will surely make for a more interesting (and realistic) story. Children whose families live in areas where there aren’t enough qualified professionals to support the family’s communication preferences; who face overwhelming adversity which can tax an already stressed family system; experience delays in accessing hearing technology; or have negative interactions with educators, physicians, and therapists whose bias result in microaggressions, racism, and harm. COVID-19 has certainly brought on plot and setting twists that have transformed how we deliver services in the short term, and inevitably in the long run.

Duh-duh-duh…another plot twist.

Another plot twist I’ll challenge you to consider comes in the form of adverse childhood experiences, or ACEs*. The Centers for Disease Control defines ACEs as “traumatic events that occur in childhood (0–17 years), such as experiencing violence, abuse, or neglect.” This adversity can take any number of forms or combinations. The Children’s Defense Fund paints a sobering picture of the well-being of America’s children with some not-so-fun facts:

  • Nearly 1 in 6 children in the United States are poor.
  • Children make up more than 20% of those experiencing homelessness.
  • The number of children without health insurance is rising for the first time in a decade.
  • More than 72% of Black and Hispanic fourth graders in public schools are not proficient in reading or math.
  • Every day in America, 5 children are killed by abuse and neglect.
  • A child or teen is arrested every 43 seconds.
  • The number of children and teens killed by guns annually would fill 170 classrooms.

 

When a child has an ACE, a biological stress response is triggered in their developing body. While stress in and of itself is not necessarily harmful (that would be positive stress), a stress response moves from positive to toxic when sustained over time in the absence of the nurturing protection provided by a stable, caring adult relationship (Shonkoff et al., 2012). When toxic stress response occurs continually, or is triggered by multiple sources, it can have a cumulative toll on an individual’s physical and mental health—for a lifetime. The more adverse experiences in childhood, the greater the likelihood of developmental delays and later health problems, including heart disease, diabetes, substance abuse, and depression.

We know the ACEs plot twist is a real part of many of our stories. But you can change the plotline by considering Positive Childhood Experiences (PCEs). A 2019 research study describes the relationship between positive early experiences and healthier adult outcomes, interacting in a powerful, responsive way.

While the body of literature describing the impact of early adversity has been building for the past 10 years, the peer reviewed literature on the power of PCEs is new and exciting! Authors in the study identified seven protective early experiences:

  1. Ability to talk to family about feelings.
  2. Feelings that family stood by during difficult times.
  3. Feeling safe and protected by adults in the home.
  4. Had at least two non-parent adults who took genuine interest.
  5. Felt supported by friends.
  6. Felt sense of belonging in high school.
  7. Enjoyed participating in community traditions.

 

Which of these PCEs have been part of your story? Which PCEs can you support and foster in the families and children you serve?

Stories matter.

The stories we anticipate/expect (known as internal bias) influences our professional behaviors. The stories we hold from our past encounters influence the expectations we set for our future encounters. Your perspective may differ from the families and children your serve. Turning to a brilliant storyteller and author, Chimamanda Adichie, we are cautioned to avoid a single story, but instead seek out opportunities to collect rich and varied stories of human potential. (If you haven’t seen her cool TED Talk, check it out).

When we consider the diversity of human experience across our field, it becomes clear that we need not have one story but a library full of stories. Some of our stories will have happy endings and some may not:

  • Which single stories do you hold?
  • What single stories are held about you?
  • What stories do you most want to rewrite? There’s still time…so remain hopeful.

 

Adrienne Maree Brown, author of Emergent Strategy, suggests that in moments of both cognitive and emotional disorganization will we be able to identify the next emergent opportunity to improve our systems, processes, relationships, and interactions. So consider the disorganization that we’re experiencing now as parents, friends, professionals, and global citizens during the time of COVID-19 and social distancing. What new programs, approaches, and innovations will emerge as we rewrite the normal of our systems and services?

Central to any emergent strategy is interconnectedness and collaborative relationships. Only through deep, connected relationships will we be able to drive the innovation that has potential to change outcomes for real-life people—children and families. So how can you double-down on the connections and relationships that currently exist? How can you strengthen relationships that need your attention now?

When we put ourselves in the story and consider, What was our role? We can repair past harm and emerge with a new approach to ensure we don’t continue to repeat past, ineffective practices. The restorative questions listed below come from the Partnership for Resilience and can be used to reflect upon interactions that need repair, or to revisit situations that challenge us and our work. Asking myself these questions after a bumpy encounter has given me a fresh way of thinking about the situation—with an aim to heal and promote resiliency.

Restorative questions:

  • What was your role in what happened?
  • What were you thinking at the time?
  • What have you thought about since?
  • Who do you think has been affected? How?
  • What do you need to do to make things as right as possible?
  • How can we make sure this doesn’t happen again?
  • What support do you need?

 

Is your story in need of a strong rewrite?

Here are a couple resources that can support your re-writing process:

  • Several years ago, Dr. Susan Lenihan and I prepared an Issues Brief that is available as a free download from NCHAM. This brief, while focused on serving and supporting children and families in poverty, offers a Framework of Effective Practices that can guide your efforts in supporting those experiencing adversity. Be in touch to share how you use this work!
  • Read, listen to, and think about anything Dr. Nadine Burke Harris has to say, including this call to action. As Dr. Harris would exclaim, we’re on the cusp of a major medical advancement when we commit to universal screening for ACEs and the subsequent treatment of childhood adversity. When children are identified with known or high risks, you can:
  1. Provide information about toxic stress and buffering.
  2. Assess for protective factors or for PCEs, jointly planning for treatment and intervention.
  3. And provide links/referrals to services and supports.

 

…and then the happy ending!

Let’s collectively imagine a story where every family, no matter the amount of adversity, gets what they need from our system and from us, as individuals. They receive the love and kindness, free of judgement for the decisions they make for their family. They receive the information they need to make informed decisions, with the support of experts who research the effectiveness of the systems and interventions to ensure the information they disseminate remains relevant and accurate as innovation/technology changes.

What’s yet unwritten are the stories of the children and families in our schools, classrooms, clinics, intervention systems, and on the other side of our teleintervention screens, or those whose journey is just beginning in this bizarre, distanced time. While we may be writing a happy ending for many characters, whose plot needs our attention now? What work do we need to do as individuals? What aspects of our systems need improvement—or entire dismantling and rebuilding?

By working together as a community of learners who create interprofessional partnerships, we can maximize our collective knowledge and skills to best support children and families experiencing adversity. We are the ones who can #changethestory and improve outcomes for all. Now is the time to create new systems, better equipped to serve all learners. Let’s get to it!

Jenna Voss is an assistant professor and director of deaf education for the Communication Disorders and Deaf Education program at Fontbonne University. You can reach out to her at jvoss@fontbonne.edu.

This blog was adapted from Plenary III from the 2020 EHDI Meeting. Watch the full presentation here.

* If you’re not familiar with the ACE score, you can take the assessment for yourself at www.acestoohigh.org. For this assessment, the not-so-magic score seems to be 4; those with scores of 4 or more appear to be at a clear risk for poor longer term health outcomes (as noted in The Deepest Well: Healing the Long-Term Effects of Childhood Adversity).

 

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