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Matt Schultz, DeafBlind Education Specialist, TSBVI Outreach Program

Abstract: Matt Schultz continues to describe the journey of a student who, as a result of her instructional team’s use of a relationship-based educational approach, had a life-changing breakthrough. He links her experience to current research on how and why this happened. To read Kersten’s Story, Part I, please visit the following link: https://www.tsbvi.edu/fall-winter-2018-issue/222-tx-senseabilities/5937-kersten-s-story

Keywords: social development, emotional development, relationship-based, competence, success, autonomy, independence, relatedness, connectedness, agency, social script, peer interaction, distress, resiliency, DeafBlind, calendar, routine, stress, Behavior Intervention Plan, BIP

Kersten’s transformative experience, detailed in the  Fall/Winter 2018 edition of Texas SenseAbilities, occurred as a result of a relationship-based and child-led program. This was a program that viewed the student simply as a young person experiencing a great deal of emotional distress, distress felt as a result of the impact that DeafBlindness may have on a person’s ability to feel successful, independent, and connected, all of which are important components of well-being. Healthy and happy growth and development that occurs as a result of the fulfillment of these feelings can be more deeply understood by looking at the Theory of Self-Determination developed by Richard Ryan and Edward L. Deci at the University of Rochester. Over the course of 30 years of research, Ryan and Deci have developed a theory of human motivation, personality development, and well-being. Their theory focuses on volitional or self-determined behavior and the social and cultural conditions that promote it. Ryan and Deci’s work states that healthy human functioning (regardless of where the individual is in their development) has a set of three innate psychological needs. Meeting these needs allows for optimal function and growth. These three needs are:

  1. Competence - the need to control outcomes in the environment and experience mastery. The need to feel successful.
  2. Autonomy - the need to be causal agents of one's own life and act in harmony with one's integrated self. The need to feel independent.
  3. Relatedness - the universal want to interact, be connected to, and experience caring for others. The need to feel connected.

When people experience feelings of connectedness, independence, and success, they feel safe and secure. They feel calm and they feel able. Their bodies and brains are open to the type of adventure, exploration, and inquiry that are foundational parts of all learning.

Kersten’s instructional program reflected her team’s desire to support her development in the three areas that Deci and Ryan describe as essential. They recognized the difficulty she was having in regulating her emotions and viewed her dysregulated feelings as clear signs that she was in distress. They saw her for what she was - a young lady struggling to feel successful, independent and connected. Let’s take a closer look at how this was accomplished and how it was captured in her IEP.

Fostering Feelings of Competence/Success

Fostering feelings of success for our students is essential in helping them build resiliency. A resilient person has an inner belief that they can do well, that they can experience stress and overcome it. This ever-important inner belief is formed from a collection of experiences that end well. It is formed slowly, over time, with opportunities to practice building skills and concepts with a level of support that ensures the task is completed and success is felt. An inner voice of resilience is formed when a person experiences moments of joy and pride in their accomplishments, no matter how big or small they may be. Each of these moments provides an opportunity for emotional regulation. States of distress, however, interrupt this biological process.

Kersten’s team made a plan to be proactive in addressing Kersten’s distress. They were able to recognize that focusing their attention on “extinguishing unwanted behavior” was not going to fulfill her need. Kersten needed to feel able. By helping her feel able, they sensed that her moments of distress would decrease, her moments of joy would increase, and that her inner resilience would begin to strengthen. Environments, activities, and people were all carefully considered in planning a successful school day for her. They focused on what Kersten would need in order to feel well instead of focusing on undesired behaviors. If she began to have difficulty during an activity, support would be provided to complete the routine while ensuring that Kersten did so with a feeling of success, even if she wasn’t able to be as independent or focused as she may have been previously. They knew that by reducing demands and increasing support, they could help Kersten complete the planned activity. By ensuring Kersten had an opportunity to learn, build her skills, and maintain feelings of success, the team was fostering her resilience. They were helping her develop an inner voice that said, “I can do this”.   

The following strategies have been taken from Kersten’s Behavior Intervention Plan (BIP). They were designed to help her feel successful and to decrease her time spent in distress:

  • Use a daily calendar and a two-week calendar with photographs and pictures to give Kersten important information about her schedule (daily schedule, choice time, weekly activities).
  • Return to the calendar between each activity to “finish” previous activities and discuss what’s next, whenever possible. If unable to return to the calendar, carry pictures with you to allow discussion of each activity so Kersten is sure of her next destination and has accurate information about whom she will be working with.
  • Plan activities that Kersten finds interesting and enjoyable. When Kersten is engaged in tasks she finds meaningful, she is less likely to feel distressed. Activities such as work, cooking, music, art, and PE have rarely caused Kersten distress.
  • Create time in her school day for long and reciprocal conversations during calendar time. Begin each day with a calendar conversation and return to her calendar for extended conversations throughout the day. These conversations will allow Kersten to gather important information about her day, process it and ask questions. The repetition gives her continued reassurance about what is going to happen around her. The predictability helps her feel calm.  
  • Build a high level of structure into new routines. Expectations about her role are very important and need to be thoroughly planned ahead of time. Materials should be set up and in place before starting any activity. Her level of independence will be low initially but will grow over time.
  • Develop consistent routines for each activity so that Kersten can anticipate what’s happening and better regulate her emotions. Each routine should have a clear beginning and ending, and it is often best to represent each step with a picture or photo. For example, when Kersten makes tacos, the first step is always to grate the cheese, and the last step is always to wash the dishes and place them in the drying rack. All of the steps in between are in the same order each time she participates in the activity. When Kersten has occupational therapy (OT), she does the same sequence of activities each time: 1.) Spin in the egg chair 2.) Spin on the spin board 3.) Rock on the rocker board 4.) Roller skate 5.) Swing. Each activity is represented by a photograph. Conversation time is set aside to discuss her routine before it occurs, while it is occurring, and afterward. Novelty and changes to the routine can be added (once the routine is established) by showing the changes to Kersten using pictures, drawings, and simple sign language.
  • Ensure that Kersten has access to preferred materials for her bus ride such as signing flashcards, DVDs to look at, and photo books of her family and friends. The bus ride to and from school is an emotional time for Kersten; these materials support her safe travel.
  • Teach Kersten a way to mark time such as setting a timer for herself during activities that do not have a clear beginning or ending, such as computer time or playing video games.
  • Monitor materials and objects in Kersten’s environment as she may throw them when upset or excited. Supervise her closely in group activities and mealtimes. Clear away unnecessary objects or clutter.
  • Provide clear information about “where”, “what” and “who” before asking Kersten to transition from one activity to the next. Set aside time for this discussion and support the conversation with pictures. Allow opportunities for Kersten to ask repeated questions about her upcoming events. Allow time for her to process this information before the transition begins.
  • Attach a photograph or drawing on her walker with Velcro strips to give her information about her next activity. This has been an effective way to redirect Kersten when traveling with her walker, especially when Kersten is having a difficult time. Although Kersten can understand many signs, she has difficulty following signed instruction while walking or when upset.
  • Communicate with other staff and students about how they can have successful interactions with Kersten. Let them know what is appropriate based on Kersten’s emotional state. For example, you could ask them to wave or say ”hi”, look at a picture with her, or when Kersten is excited, upset or simply overstimulated, ask them to step back or give Kersten more space.
  • Use body positioning when necessary to prevent her from lunging or pushing her walker into other students or staff when traveling (stay between Kersten’s walker and others). Redirect her attention to a picture of her destination.
  • Keep a calm and easy demeanor when providing Kersten the support and guidance she needs to feel successful. We are her models for emotional regulation. She will learn to regulate herself by seeing us do so.  
  • Provide direct instruction in calming strategies such as deep breathing or yoga. If Kersten appears anxious or upset, invite her to sit down at her calendar station. Sit directly across from her. Take ten deep breaths while counting. Kersten will imitate you. After 10 breaths, sign “calm”.

Fostering Feelings of Autonomy/Independence

Agency, referred to in this article thus far as feeling “able”, is the ability of an individual to act independently and make meaningful choices, and also to have a say in what is happening to them and around them. Many of our students may be at risk for feeling a lack of agency when they need a lot of support to complete everyday tasks like dressing, bathing, and eating. When feelings of agency and independence are at risk, teams need to be creative and think carefully about what tasks or responsibilities their students may be most interested in learning. Starting with a list of their interests, compiled by the people that know them best, is essential.

A child-led approach helped Kersten spend time doing things in which she was interested, and this motivated her to actively engage in them. When her interests were honored and infused into her school day, she felt like a partner in her education. Kersten’s team gave her regular opportunities to make informed choices about how she would spend her recreation and leisure time, what she would eat in the cafeteria, what classmates she would engage in conversations with, and whom she would partner with during activities. When Kersten was motivated and the activities were set up so that she could be successful, she was able to complete tasks with a higher level of independence. From regular feelings of success came a growing sense of resiliency, agency, and independence. Kersten began to see herself as someone who could make successful choices and decisions that contributed to her sense of well-being. The following IEP goals were created to support these feelings of independence:

  • In 36 instructional weeks, given two picture symbols placed on a choice board, Kersten will select a preferred recreation and leisure activity by pulling the picture off the choice board and placing it onto her daily calendar, in 3 out of 4 opportunities.
  • In 36 instructional weeks, given a picture sequence, Kersten will increase her independence by completing a work sequence without prompts in 3 out of 4 opportunities (Kersten’s work or vocational routines were selected from a list of interests that her school team and family worked together to create).  
  • In 36 instructional weeks, with picture symbols and staff encouragement from a trusted, familiar adult, Kersten will increase independence in two daily living skill activities by reducing adult prompts by 50%, in 5 out of 5 trials.
  • In 36 instructional weeks, Kersten will demonstrate an understanding of new time concepts such as the names and sequence of the months of the year and holidays by signing, scheduling events, and initiating conversations using sign language and picture symbols, 100% of the time.
  • In 36 instructional weeks, with the support of a trusted and familiar adult, Kersten will initiate conversations at her daily calendar on topics that are important to her by pointing to pictures, signing and/or requesting staff to draw the topic, 4 times per day.

Fostering Feelings of Relatedness/Connectedness

People tend to feel connected to the people around them, their friends, family and co-workers, when they are engaged in great conversations and when they work together to create shared experiences with a shared purpose.  

Kersten began each school day with a 30-45 minute conversation about her day. It included what she would be doing, where she would do it, and with whom she would be doing it. These were important things that she wanted and needed to know. Kersten decided on the order of topics to be discussed and led the discussion by using sign language or simply pointing to pictures of topics she was eager to discuss. Her picture symbols were stored in a binder that would sit on the lap of her conversation partner, giving Kersten easy access to them during the conversation. It was only after these discussions had transpired that her teacher would ask her to help move the picture symbols onto her daily sequence strip and discuss the order in which her day’s activities would occur. Kersten also discussed highlighted events that were scheduled on her weekly calendar; the team ensured that all of her conversations could last until her curiosity was exhausted. Conversations were supported by picture symbols paired with print and sign language. A set of blank 3x5 cards and markers were stored close by to expand the conversation with drawings if needed. Her teacher would start the drawing but look for opportunities for Kersten to participate by coloring something in or tracing a dotted word representation. Eventually, Kersten engaged in long conversations about important events that were represented with pictures and print on a monthly calendar. By infusing Kersten’s interests into her school day, these conversations were motivating. By giving Kersten the space and time to initiate preferred and important topics, the conversations were student-led. Because her conversations included opportunities for each partner to “talk” and “listen”, they were balanced and enjoyable.

Kersten’s team also looked for ways to increase her sense of connectedness to her classmates and peers. She loved to make things. Over the years, she made a variety of items that were sold at a monthly Farmer’s Market on campus. Pickles, screen printed shopping bags, smores, and cookies were among her favorite items to make and sell. Kersten, alongside her classmates, spent hours each month making these items. Then, one time a month, they would transport the items to an area where tables were set up to create an outdoor market. Other classes assembled to sell their wares as well. Sitting together, Kersten and her classmates sold their items to interested customers made up of school staff and peers. Support was provided to ensure the customer interactions were successful. Kersten and her classmates became part of a community of artists, artisans, chefs, and bakers. They were “makers”, and what they made had value to others. These experiences at the market were powerful for how Kersten saw herself.  She was a valued member of this community with important roles and responsibilities that were recognized by her peers and teachers.

KerstenMarket

Photo Caption: Kersten awaits customers at a monthly market, ready to ask them if they would like pickles or pickled carrots.

 

When Kersten expressed interest in a new student who also happened to use a walker, her teacher saw this as an opportunity to support her feelings of connectedness and made a plan to help Kersten make a friend. Walkers were not the only thing the two girls had in common. They both loved butterflies. A time in both girls’ schedules was created for them to get together on a weekly basis to make greeting cards. The cards were decorated with designs of the girls’ choosing. More often than not, butterflies were the focus of the design pattern. Together, they would sit and sell their cards at the monthly market. Slowly, over time, through these shared experiences over a shared interest, Kersten made one of the strongest connections a person can feel, a special friendship.  

The following IEP Goals were developed by Kersten’s team to support her feeling of connectedness to her teachers and classmates and to the broader school community:

  • In 36 instructional weeks, given a script (pictures), Kersten will improve her social skills by taking at least two turns using sign language with less familiar people in 3 of 5 trials. 
  • In 36 instructional weeks, Kersten will improve her communication skills by using expressive sign language to report on past events and request objects, actions and information during functional routines in 3 out of 5 opportunities.
  • In 36 instructional weeks, with picture symbol support and using role-play activities as practice time, Kersten will greet preferred peers with a wave, handshake, or high-five in 3 out of 5 trials.
  • In 36 instructional weeks, with the support of a trusted, familiar adult, Kersten will initiate conversations at her calendar station by pointing to pictures of interest or by signing her preferred topic, at least 3 times per day.
  • In 36 instructional weeks, during a weekly routine and in response to a picture symbol sequence book and guidance from a trusted adult, Kersten will take 4 turns with a peer to make a preferred item, in 4 out of 5 opportunities.

Helping Kersten make connections with people around her was an important part of her successful growth and development. Her team documented and discussed these memorable connections using experience stories. Kersten helped make these stories and was provided time to read and re-read them within her weekly schedule. Weekly time was embedded into her schedule for her to share these stories of connections with preferred teachers and classmates as well as her family. She was provided regularly scheduled time to read and reflect, to celebrate, and to help these stories of connection become the prevailing narrative of her own story - a story of a young lady striving to feel what we all desire to feel: successful, independent, and connected.  

References

Deci, E.L., & Ryan, R.M. (2000). Self-determination theory and the facilitation of intrinsic motivation, social development, and well-being. American Psychologist, 3(1), 68-78.

Deci, E.L., & Ryan, R.M. (2008). Self-determination theory: A macrotheory of human motivation, development, and health. Canadian Psychology, 49(3), 182-185.

National Scientific Council on the Developing Child. (2005/2015). Excessive stress disrupts the architecture of the developing brain. Working Paper No. 3. Retrieved from http://www.developingchild.net.

National Scientific Council on the Developing Child. (2010). Persistent fear and anxiety can affect young children’s learning and development. Working Paper No. 9. Retrieved from http://www.developingchild.net.

National Scientific Council on the Developing Child. (2015). Supportive relationships and active skill-building strengthen the foundations of resilience. Working Paper No. 13. Retrieved from http://www.developingchild.net.