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A Publication about Visual Impairments and Deafblindness for Families and Professionals

Vicki DePountis, Program Specialist for the Blind and Visually Impaired, Division of Special Education, Texas Education Agency  

Abstract: The Texas Education Agency shares updates on projects and collaborative efforts dedicated to students who are blind, visually impaired, and DeafBlind.

Keywords: Texas Education Agency, TEA, Special Education Strategic Plan, best practices, leadership, local education agency, LEA, Education Service Center, ESC, outcomes, resources, supports

It has been another industrious year as the Texas Education Agency (TEA) continues to execute on the Special Education Strategic Plan. You may recall that last year, TEA increased its capacity to provide technical support by hiring individuals who possess a great deal of expertise in areas related to special education. As you might expect, these program specialists have expertise in areas such as working with students who need sensory supports, early childhood, evaluation, and transition. Other areas of expertise, like parent engagement, dyslexia, and Section 504, reflect the interdisciplinary collaboration necessary to support students with special needs in the general education setting.

As a former teacher of students with visual impairments and certified orientation and mobility specialist, I am honored to serve TEA as the Program Specialist for the Blind and Visually Impaired. The program specialists provide technical assistance within TEA, to local education agencies (LEAs) through the educational service centers (ESCs), and through these newly redesigned Statewide Leadership Networks. I keep up with current research and stay in touch with the needs of students with visual impairment by participating in various workgroups around the state. A large part of my role is to share the information and concerns with the Division of Special Education Programs, other divisions at TEA, and other state agencies.

One of my favorite parts of my job is working with the highly qualified Texas DeafBlind Project team, under the leadership of Emily Coleman, Outreach Director at the Texas School for the Blind and Visually Impaired (TSBVI). The Texas Education Agency contracts with TSBVI to improve outcomes for students who are DeafBlind. As project director, I have a front-row view of the team’s in-depth content knowledge and development of internationally used training materials to support students with DeafBlindness, over 81% of whom have identified disabilities in addition to visual and auditory impairments. A new grant cycle began in the Fall of 2018, and the DeafBlind Project was fully funded for another five years. Some of the goals of the DeafBlind Project are to improve educational outcomes, increase early identification, facilitate communication, improve post-school outcomes, engage and empower families, and train qualified personnel. Project goals include systemic collaboration with relevant technical assistance networks, such as the School, Family and Community Engagement Network, one of the ten redesigned technical assistance networks that are part of the Special Education Strategic Plan.

This brings me to a huge TEA endeavor, the redesign of the Statewide Leadership Networks around the following areas of focus:

  • Child Find, Evaluation, and ARD Supports;
  • School, Family, and Community Engagement;
  • Inclusive Services and Practices for Improved Student Outcomes;
  • Support for Students Identified with Autism;
  • Intervention Best Practices;
  • Support for Students with Intensive Needs;
  • Support for Students with Sensory Impairments;
  • Support for Students in Small and Rural LEAs;
  • Child-centered Transitions;
  • Support for Students with Multiple Exceptionalities and Multiple Needs.

These new networks are expected to be in full swing in the 2018-2019 school year.

Big strides have also been made in implementing the Special Education Strategic Plan’s identification, evaluation, and placement initiatives. TEA will require every school system, through both targeted and broad outreach, to notify parents about potential eligibility for special education evaluation. The Evaluation Capacity grant is designed to research, identify, procure, and deploy resources and personnel to assist LEAs in securing appropriately certified and/or licensed evaluation staff for the purposes of completing evaluations for eligibility for special education services within the required timeline. This grant will provide LEAs with improved access to highly trained evaluation personnel and/or funds to free up existing evaluation personnel. Resources and support will be made available to help LEAs across the state quickly fill short-term needs for evaluation personnel. Some LEAs may see an increase in the need to provide these services to students who may not have been identified appropriately. A $65 million infusion of IDEA formula funds has been distributed by TEA to school systems to support any need for additional services to newly identified students. Additionally, another grant opportunity has been released to provide LEAs with resources and guidance specific to the provision of compensatory services in accordance with the requirements of IDEA.

Furthermore, TEA will update guidance and provide training on best practices, including explicit clarification of the interplay between Multi-tiered Systems of Support (MTSS), Section 504, dyslexia, and special education. The revised Dyslexia Handbook is available here https://tea.texas.gov/academics/dyslexia/ and will soon be available in Spanish as well.

Also in development are improved training and resources on the dispute resolution process and an internal capacity to hear complaints with a process that is clear to all parties, especially parents. Finally, the new Special Education Review and Support Division, with stakeholder engagement, is defining the review process to focus on improved student outcomes, not just compliance.

As you can see, TEA is working hard to ensure that the state has a strong statewide special education infrastructure, with high expectations, to support students in every part of Texas, at every ability level. Feel free to subscribe to receive topic-specific email notifications on TEA’s activities by clicking on this link: https://public.govdelivery.com/accounts/TXTEA/subscriber/new?topic_id=TXTEA_5

Tammy Winkenwerder, Program Specialist, Texas Workforce Commission

Abstract:  Texas Workforce Program Specialist explains the benefits of career exploration through Explore STEM!

Keywords:  Vocational Rehabilitation, VR, career exploration, STEM, Pre-employment Transition Services, Pre-ETS, Texas Workforce Commission, TWC, the Explore STEM! Initiative

Workforce Innovation and Opportunity Act (WIOA) requires that state Vocational Rehabilitation (VR) programs focus specifically on career exploration as a part of the five pre-employment transition services (Pre-ETS) provided to students with disabilities. These five Pre-ETS areas include work-based learning, counseling on post-secondary education, workplace readiness, self-advocacy, and career exploration.  

To promote career exploration for students with disabilities, the Texas Workforce Commission’s (TWC) VR program provides these services through various individualized services and statewide programs. Some examples of these activities include exploring information about “hot” jobs for the area the student resides or will be willing to move, researching the job market and other job information through online resources, interviewing professionals working in the community, and completing vocational interest inventories.

Knowing that science, technology, engineering and math (STEM) are hot job markets that pay well and provide fulfilling careers, TWC implemented the Explore STEM! initiative this past summer. TWC partnered with colleges, universities, and technical schools to provide STEM camps for students with disabilities around the state. These camps addressed many different STEM concepts and were varied, depending on the institution’s creativeness. To give a few examples:  One college held a camp to introduce students to physics using flying drones and 3D printing. Another university introduced students to rockets and cosmology. The students met rocket engineers. A third college introduced students to biotechnology, health sciences, and manufacturing through various tours, interactive activities and presentations. Overall, there were 10 institutions that held 21 camps in the STEM fields. Many of the students who participated left the camp with more interest in STEM and had new skills and confidence in their abilities to pursue STEM careers.

In addition to learning about STEM, the students worked together to complete various activities and projects and overcame barriers together, as exemplified by two students who attended one of the camps near Houston. This camp gave students the opportunity to design characteristics and build robots to perform tasks of varying difficulty. Mike and Steve (names changed for privacy) are two camp participants who used each other’s strengths to successfully complete a task. Mike is a young man with a form of autism who has difficulties in school due to certain behaviors that he cannot control. However, he owns over 11,000 Legos and is a master at building things but didn’t have much knowledge about robotics and engineering. Steve is a young man who is blind and very knowledgeable about physics and engineering concepts. However, he was unable to see the parts needed to build the project during the camp. Mike assisted Steve by describing the parts to him. Steve then let Mike know how putting together some of those parts would make them function better. In the end, the two students completed their project together despite their barriers because they learned problem-solving skills, how to communicate with each other, and valued working together. They not only experienced the field of robotics but they also experienced team work and inclusion.

If you or someone you know is a student with a disability, are between the ages of 14 and 22, and think you could benefit from Explore STEM!, career exploration services, or pre-employment transition services, please contact your local TWC VR program and speak to a VR counselor. They are there to help students with disabilities explore and achieve their future career goals. If you are unsure of how to start that process, please check out the Directory of Texas Workforce Solutions - Vocational Rehabilitation Services Offices at this website and search for your zip code. VR contact information for your area will be there.   

Staff Author,  Blind Children’s Vocational Discovery and Development Program

Abstract: Joe Perez joined Texas Health and Human Services in December 2018.  Learn more about his role and goals for the Rehabilitative and Independence Services (RIS) section and the Blind Children’s Vocational Discovery and Development Program.    

Keywords: Blind Children’s Vocational Discovery and Development Program, BCVDDP, Blind Children’s Program, BCP, health care, Office of Independence Services, Rehabilitative and Independence Services, RIS, Texas Health and Human Services, HHS

JoePerez

Joe Perez joined Texas Health and Human Services (HHS) on December 17, 2018, as the deputy associate commissioner for Rehabilitative and Independence Services (RIS) where he oversees more than 200 employees. An accomplished health care executive with more than 13 years of experience overseeing and managing the daily operations of health care facilities, he ensures high-quality and efficient health care services.   

Before joining HHS, Perez worked for the Veterans Administration. He served as a combat Marine in Kuwait and Iraq for Operation Enduring Freedom and Operation Iraqi Freedom.

“Because of my military and professional experience, I understand firsthand the importance of caring for people in need as well as their families,” Perez said. “I plan to continue that mission in my role within Texas HHS. The programs and services we provide are vital to Texas families throughout the state. I look forward to continued collaboration with key partners such as TSBVI, stakeholders, parents and the children we serve.”  

Rehabilitative and Independence Services is made up of three offices.

  1. Office of Guardianship Services establishes a relationship with people that need help managing their daily affairs due to their age, disease or injury. Learn more at https://hhs.texas.gov/laws-regulations/legal-information/guardianship.
  2. Office of Deaf and Hard of Hearing works in partnership with people who are deaf or hard of hearing to eliminate societal and communication barriers to improve equal access for people who are deaf or hard of hearing. Learn more about this office at https://hhs.texas.gov/services/disability/deaf-hard-hearing.
  3. Office of Independence Services (OIS) works with people who are blind and visually impaired, have a traumatic brain injury or spinal cord injury, and people with disabilities to help reach their independence goals. To learn more about these services, visit the following webpages:

hhs.texas.gov/services/disability/blind-visually-impaired;

hhs.texas.gov/services/disability/comprehensive-rehabilitation-services-crs; and

hhs.texas.gov/services/disability/independent-living-services.

OIS provides specialty services to children who are blind or visually impaired through the Blind Children’s Vocational Discovery and Development Program. This program provides opportunities for children who are blind or visually impaired to learn the skills needed for personal independence, potential employment and other life pursuits. The Blind Children’s Program provides habilitative services that enhance a child’s ability to develop skills comparable to his or her peers and help children achieve financial self-sufficiency as adults. BCP specialists serve the dual functions of case managers and direct service providers.  

Each Rehabilitative and Independence Services (RIS) office provides a key service to Texans across the state.

“My goals for RIS is to continue to provide quality and timely services to the thousands of Texans we serve,” Perez said. “I look forward to meeting and collaborating with you in 2019.”

William Daugherty, Superintendent, TSBVI

Abstract: The superintendent of TSBVI describes a pilot program to support braille literacy instruction in Texas.

Keywords: early literacy, braille instruction, reading, “Literacy for Little Ones”, concept development, motor skills, Education Service Center, ESC, family

It is widely recognized that many young children who are likely to become braille readers do not have early literacy-developing experiences similar to those of typically sighted children. Typically sighted children are surrounded by the printed word as soon as they can see. They begin to develop literacy through incidental learning and through more direct avenues such as being read to by family members while the child holds and looks at the book. Young children with severe visual impairment often do not have sufficient, similar experiences, and may not begin to develop reading skills until formal instruction begins as they enter school. By the same age, the majority of typically sighted students have achieved a much higher level of literacy independence and are using their reading and writing skills to access the broader curriculum. The child with the visual impairment can easily fall behind.

This issue was a common concern when I entered the field as a COMS and TVI in 1979. Based upon direct observation and discussions with parents and educators, the concern persists to this day. Certainly, there have been improvements in early braille literacy and instruction during the ensuing decades, but far too many children are still not achieving their full potential during those early years where a strong foundation in reading sets the stage for all academic learning in future years.

In the spring of 2018, TSBVI began seeking partners in the Regional Education Service Centers (ESC) who had the interest and capacity to collaborate with TSBVI on a pilot program aimed at developing on-going training and supports for parents and their young children in the area of braille literacy. We selected the 3-5-year-old age range, with flexibility to go up or down in age as needed. The concept behind the pilot was to develop a model that could be used by others around the state who have a similar interest in refining and expanding their early braille literacy efforts. The primary goal of the pilot is to help families understand how to promote early concept development and motor skills that support literacy by doing related activities in the home and community with their children. Additionally, the pilot is intended to have families and their children’s TVI all working together on common learning goals tied to literacy. Because this is a pilot, meaning we wanted a place where we could figure out what works and what doesn’t, TSBVI wanted to partner with an ESC that already had a strong focus on parent supports related to literacy. The Region 14 ESC in Abilene fit this perfectly, and their VI Consultant, Brenda Lee, was an enthusiastic and committed collaborator who was already involved in similar activities with the families in her region.

A team from TSBVI, including Cyral Miller, Debra Sewell, and Renee Ellis, worked with Brenda Lee and ESC 14 to develop a format for a series of workshop-type events that bring families and TVIs together for fun and productive activities designed to promote early learning that forms the foundation of literacy. These activities, such as group cooking of fun foods and the development of parent-developed books for each child, have long been in the toolkit of our field. The pilot development team has many years of experience from which they can pull out the best of such activities, while also striving to ensure that the curriculum reflects family input on the learning needs and style of their child and what interactive learning experiences the family would value.

Based upon our experience with the pilot so far, a primary takeaway is that getting people together on a regular basis to actively engage in promoting literacy around the learning needs of specific children is powerful. The good ideas about what works and things to try are coming from the families as well as the professionals. The mutual support families receive from each other is key, and it builds a sense of community that has the potential to go well beyond the literacy focus.

Where we go from here is to take what we have learned from this pilot and use it as a guide in another ESC region until we have done it enough to no longer call it a pilot.  Along the way, we hope to learn more about some of the great early literacy activities already going on in spots around the state. We want to enlist the skills and modeling that can come from older students and adults who are proficient braille readers. We want to expand and adapt the initiative to include the learning needs of young children with low vision who are likely candidates for the use of magnification. We want to develop our knowledge and skills in helping young children with additional learning challenges become literate in a way that works for them. But overall, we are trying to support whatever is needed at the local level to ensure that children enter into the school system as prepared to learn as they can be.

For additional information on the pilot, contact Cyral Miller (); Debra Sewell (); Renee Ellis () or Brenda Lee ().

Photo 1: Brenda Lee, ESC 14 Consultant for Visually Impaired and DeafBlind, walks with two young children at a Literacy for Little Ones workshop

Photo 3: An example of a book to promote early literacy made by parents in the Literacy for Little Ones pilot project







Cecilia Robinson, Assistive Technology Consultant, TSBVI Outreach

Abstract:  Accessible Instructional Materials (AIM) consists of four specialized formats: braille, large print, digital text and audio. Students with visual impairments are eligible to receive AIM. Understanding AIM and working collaboratively to make decisions about AIM will likely facilitate students’ participation in the general education curriculum.

Keywords:  Accessible Instructional Materials, AIM, Accessible Educational Materials, AEM, core instructional materials, timely manner, specialized formats, AEM Navigator, National Center on Accessible Educational Materials, TEA, IDEA, accessibility, Bookshare, Learning Ally, Assistive Technology, AT

What is AIM?

Technology changes rapidly. In school and at home, many students use technology to do homework, play games, communicate with friends and family, or organize their daily activities. Technology is the most helpful when it works and the information is accessible. Did you know that the provision of accessible materials is written into the law?  

The Individuals with Disabilities Education Improvement Act of 2004 (IDEA 2004) requires state education agencies to adopt the National Instructional Materials Accessibility Standard (NIMAS), a standard file format that can be used to create electronic files of print materials to facilitate the conversion of these files into four specialized formats: braille, large print, digital text and audio. These specialized formats are known as Accessible Instructional Materials (AIM). In some states, they are called Accessible Educational Materials (AEM).

Why AIM is Needed

IDEA 2004 states that core instructional materials will be provided in a timely manner in specialized formats when needed by students with disabilities. For students with visual impairments, it means that they will receive their instructional materials or textbooks at the same time as their sighted classmates. Their textbooks will be produced and provided in the specialized format recommended by the student’s ARD committee/IEP team.

Students are expected to use all kinds of educational materials, in addition to their textbooks, throughout their school day. At times, these materials may not be accessible. An example is learning management systems. The content may include images that do not have alternative text; therefore, these images cannot be read or interpreted by specialized software like a screen reader. Another example is videos. When videos are not described, students may miss critical information due to their visual impairment.

While AIM is about textbooks, other educational materials should be made accessible for each student as well. Instructional and educational materials, when provided in an accessible format and in a timely manner, will facilitate a student’s best learning and participation.  

Acquiring AIM

Students with visual impairments are eligible to receive AIM. In Texas, if a school district uses state-adopted instructional materials, then the district can submit the order to the Texas Education Agency (TEA). For more information on AIM for Texas students, go to this website of the Texas Education Agency: https://tea.texas.gov/Academics/Instructional_Materials/Accessible_Instructional_Materials/

If a school district does not use state-adopted instructional materials, then it will be the district’s responsibility to provide the instructional materials in specialized formats as required by each student. If the purchased instructional materials are not accessible, school district personnel can work with the publisher to provide AIM for their students.  

Many books in alternative formats are available through:

Students must become a member before they can access the books from Bookshare or Learning Ally. Many students may already have membership through their school district. Family members have the option of signing up their child to become a member of Bookshare or Learning Ally. Membership information can be located on both websites.

To learn more about acquiring AIM in Texas, go to the Texas Assistive Technology Network’s Website at http://www.texasat.net/at-resources/accessible-instructional-materials. Click the link Texas Roadmap for AIM and also see the flowchart included with this article.

Making Decisions about AIM

The AEM Navigator is an interactive tool that guides educational teams through the process of making decisions about AIM. It addresses a student’s needs for AIM, the selection of specialized format(s), acquisition of the format(s), and supports for use. The team can fill out information in text boxes and document the justification for why they make certain decisions. When all the information has been entered, a summary will be generated. It can be saved or printed.

The AEM Navigator offers the opportunity for a team, including family members, to learn about AIM and work together collaboratively when considering AIM for a student. More information about the AEM Navigator can be located at http://aem.cast.org/navigating/aem-navigator.html#.XE0Ca1xKhPZ.  

The National Center on Accessible Educational Materials has numerous resources to assist educators, family members, publishers, accessible media providers and others with their understanding of AIM or AEM. Click http://aem.cast.org/ to start browsing the resources.

A Few Things to Remember

  • AIM may require the use of technology. Students who use electronic or online textbooks may use specialized software (e.g. magnification and screen reading) or hardware (e.g. digital book reader, refreshable braille display, etc.) to access these books. It is critical that the technologies are in good working condition and the students know how to use it.
  • Many books in alternative formats can be read on multiple devices (e.g. tablet, phone, computer or book reader) or via free apps, such as Learning Ally Link (https://learningally.org/link), Capti Voice (https://itunes.apple.com/us/app/capti-narrator/id437052502?mt=8) or Dolphin’s EasyReader (https://itunes.apple.com/us/app/dolphin-easyreader/id1161662515 .
  • Students who use print-based AIM may use equipment such as an optical device or a video magnifier.
  • Digital materials may not be accessible if accessibility has not been included in its planning and development.
  • Always ask if AIM is accessible and usable for specific students.

Summary

Accessible Instructional Materials (AIM) was included in IDEA 2004. It requires that core instructional materials be provided in a timely manner and in specialized formats when it is needed by students with disabilities. In Texas, educational teams can follow the process to acquire AIM if state-adopted textbooks are being used by the district. Bookshare and Learning Ally also provide books in specialized formats such as audio and digital text. Educational teams, including family members, can use resources and tools such as the AEM Navigator, when making decisions about AIM. Students are likely to be more successful in school if they are provided with educational materials that are accessible and usable to them.

Stephanie Walker, M. Ed., Educational Consultant, Lead for the State Leadership Services for the Blind and Visually Impaired (SLSBVI) Network, Education Service Center Region 11

Abstract: CVI is a neurologically based visual impairment that may be improved with targeted and specialized interventions. Teachers often feel unprepared to assess and modify for this highly complex condition. It can be frustrating for parents and guardians if they see that the educational team lacks guidance about how to address their child’s vision needs. The Texas CVI Statewide Initiative has been formed to improve educator confidence and competence in addressing CVI around the state and thus improve outcomes for children who have CVI.

Keywords: Texas CVI Initiative, cortical visual impairment, cerebral visual impairment, CVI, neurological impairment, Dr. Christine Roman-Lantzy, Christine Roman, teacher training, university prep programs, Texas Tech University, TTU, Stephen F. Austin University, SFA, CVI Range Endorsement©, Amanda Lueck

Neurological, cortical and/or cerebral visual impairment (CVI) are all terms that are used to describe brain-based visual impairments. This area of the field of visual impairment is expanding rapidly due to new research. As professionals in the field debate names, strategies, assessments, research, and theories, many parents and guardians in the United States are asking for educators to utilize appropriate assessments and interventions across educational settings for students identified with CVI.

In 2018, 19% of students with visual impairment in Texas had a diagnosis of CVI, making CVI the leading cause of visual impairment in Texas. The second leading cause of visual impairment in Texas was retinopathy of prematurity (ROP) at 15%. The percentage of students diagnosed with CVI has been steadily increasing each year. Texas professionals are prepared to answer the call to action from parents and guardians. We are committed to impacting student success where it counts the most, utilizing the most appropriate interventions based on assessments across multiple settings. This begins with assessing the current level of knowledge surrounding CVI and expanding that level throughout the state and across professions.

In order to identify ways to expand the level of expertise within CVI and keep up with the current research, Texas leaders in the field of visual impairment are meeting to assess the support and/or training necessary for professionals to meet the ongoing needs of students with CVI statewide. Participants include: members of the SLSBVI (State Leadership Services for the Blind and Visually Impaired) Network, including the statewide lead, Stephanie Walker; Dr. Shannon Darst and Dr. Rona Pogrund from the Texas universities that prepare students to become Teachers of Students with Visual Impairments, Texas Tech University (TTU) and Stephen F. Austin State University (SFASU); Emily Coleman, Director of Outreach Programs, Texas School for the Blind  and Visually Impaired (TSBVI); two Outreach VI Education Specialists from TSBVI; and an independent consultant from the Houston area, Diane Sheline, who has extensive experience in evaluating children with CVI and has made it a special area of study. Coleman and Sheline have also completed the CVI Range Endorsement©. In the United States, the most common term used is Cortical Visual Impairment, so the group adopted CVI to refer to this condition. This group is called the Texas CVI Statewide Initiative.

The Texas CVI Statewide Initiative identified three levels of knowledge in the area of CVI as well as existing opportunities for training. Level 1, reflection, refers to a basic level of knowledge related to CVI. This can be attained through university coursework at teacher preparation programs, online courses, or in-person trainings with Dr. Christine Roman-Lantzy, Dr. Amanda Lueck, or Diane Sheline. Level 1 trainees would observe someone using the CVI Range© (or another assessment if/when one becomes available) to assess the student’s visual functioning, provide appropriate intervention, and reflect on the student’s response to that intervention. A mentor who is very seasoned in using the tool can provide this experience. In Texas, a year-long process called the CVI Clinic offers attendees an opportunity to observe this process (https://library.tsbvi.edu/Player/18435 for English; https://library.tsbvi.edu/Player/18436 for Spanish). TSBVI is also creating online modules, guided by the newly released (2018) second edition of Dr. Christine Roman-Lantzy’s book, Cortical Visual Impairment: An Approach to Assessment and Intervention, to provide an additional resource for an observer of this process if an experienced mentor in CVI is not available. These online modules could also be used within university coursework to provide Level 1 training. Texas Tech University and Stephen F. Austin State University are developing additional coursework to ensure that new TVIs have a solid base of knowledge in CVI when they enter the field.

The second level, implementation, is what we like to refer to as the “boots on the ground” level. With support, educators will perform an assessment, determine intervention, write reports with relevant information about CVI, develop IEPs, and collect data supporting the selection and effectiveness of interventions. The first step is performing the assessment with the support of a CVI coach or mentor. This can be achieved one-to-one with a mentor well versed in CVI and assessment. Assessment practice can also be accomplished through the CVI Clinic (see above), as the professional participates by gathering information, scoring during all steps of the process, and completing a report on their student. After the clinic, teachers provide follow-up video of their student’s visual behavior after interventions have been put into place. CVI Study Groups offered by TSBVI Outreach can be utilized to grow in the area of implementation, as participants engage in conversations, view student videos, and exchange ideas with a group of colleagues related to students in different phases of CVI. The online modules described above will offer users a second level guided practice, which will require implementation of the CVI Assessment process. This will give participants a chance to practice implementation and may be utilized within university coursework to provide a higher skill level in relation to CVI. Perkins School for the Blind offers a number of more specific web trainings on apps for CVI and literacy for students with CVI (http://www.perkinselearning.org/cvi). Another great, multi-dimensional resource for CVI is offered through the American Printing House for the Blind’s website (https://cvi.aphtech.org/).

A professional may spend a great deal of time at Level 2 (just like our kids may spend a great deal of time in Phase II of the CVI Range) building their skills before they become ready for Level 3, which involves facilitation. Level 3 includes serving as a CVI mentor, leading trainings for those who have less experience, and assisting with CVI Clinics.  An educator at Level 3 might pursue the CVI Range Endorsement©. A professional that is at the facilitation level would be expected to possess the skills to administer an assessment appropriately, be well-versed in implementing a wide range of interventions and strategies successfully, deliver training to educational teams, and continue to expand their knowledge of current research and practices in the area of neurologically based visual impairment.

It is important to the Texas CVI Initiative to ensure that we are addressing the capacity of educators in Texas at all levels, and also to build a strong mentor base that can support additional educators in developing skills related to CVI. CVI is a complex and endlessly fascinating topic. As the Texas CVI Initiative moves forward, we will continue to consult with families of students with CVI to ensure that the continuum of professional learning we are building is addressing the unique needs of this population and that we are taking into account family needs as well. We are committed to providing the best opportunities for all of our students with visual impairment, and we believe a network of support is essential to provide families and educators with the tools necessary to support students with CVI.  





There’s an App for That… Aira: A New Tool for Independence

 

Chris Tabb, Statewide Orientation and Mobility Specialist, TSBVI Outreach Program

Abstract: Chris Tabb provides an update on a recent app, Aira, that provides access for users with visual impairment and blindness.

Keywords: smartphone, app, independent living skill, ILS, assistive technology, AT, accessibility, free service,

Though Aira has been providing instant access to visual information for users through their smartphone app for a few years, what is new is the amount of free access that users have to that service. But, before we jump into how you can use Aira for free, let’s spend a bit of time exploring what Aira is.

Aira is a service that uses a cellular network or WiFi network to connect a person who is blind or visually impaired with a trained agent who can assist with an array of activities. The service allows the Aira agent to see what is around the user via a camera that is mounted on a pair of glasses or via the camera on a user’s smartphone. Aira uses a pricing structure for its service that allows for free usage in some settings and progresses to paid blocks of minutes. Larger time blocks cost more money per month.

Many businesses and public facilities now offer free use of Aira while you travel within their locations; common examples are airports, grocery stores, and government offices. For example, an airport that provides Aira as a means of accessibility for travelers pays a fee and the traveler makes use of the services at no extra charge. When you connect with an Aira agent at such an establishment, they will provide you with information about your current environment, help to answer questions about what is nearby, and aid in orientation. If you have an account established with Aira and have provided certain personal details, other services can also be made available, such as the agent assisting with arranging ground transportation from the airport.

Aira agents have to abide by specific guidelines for particular activities such as street crossings. Here is an excerpt from the Aira FAQ (Frequently Asked Questions) webpage about Street Crossings:

You will receive as much information about the intersection as possible, beginning about half a block from the intersection. This information includes, but is not limited to: the shape of the intersection, the number of lanes that will be crossed, the presence of any medians, what the crosswalk and curbs are like, how the intersection is controlled (stop sign vs. stoplight), and where the pedestrian signal button is located (if applicable). The agent can offer any other information about the intersection that you request, aside from the presence of any moving objects. Once at the curb, if an agent can clearly see the pedestrian signal, they can let you know when the signal has changed in your favor if you have requested them to do so. Once you have finished any follow-up questions about the intersection and have located the curb, the agent will say “I will remain silent as you cross” and remain completely silent until you step up onto the curb on the other side of the crossing. The call will then continue as usual.

Here are some ways that travelers use Aira in their daily lives:

• Reading mail

• Reading directories and signage

• Choosing matching clothing

• Reading prices or other item details at stores

• Navigating environments such as food courts and airports

• Reviewing photographs

• Identifying familiar people in an environment (when the agent has been provided with photographs of the person(s) they are to be locating)

• Reading menus and menu boards

• Describing scenes in the community

• Identifying storefronts

• Obtaining transportation, such as calling in a taxi or other transportation service

• Locating nearby services such as cafés, ATM’s, grocery stores, etc.

• Identifying bus routes and bus numbers at local transit stops and stations

For more information, please visit https://aira.io/ or search the web for “aira.”

What’s Happening with Active Learning, Part 2: Online Training, Train-the-Trainers, New Tech Loan Items, and the International Conversation Continues

Scott Baltisberger and Sara Kitchen, VI Education Specialists, TSBVI Outreach Programs

Abstract: The authors provide an update on the expanding knowledge and use of Active Learning, a technique designed to provide education for students who are functioning within the developmental range of 0-48 months, in Texas and beyond. Part One of this series was included in the Fall/Winter 2018 issue of TX SenseAbilities.

Keywords: Active Learning, international, assessment, Education Service Center, ESC, TSBVI, Penrickton Center, Perkins School for the Blind, Lilliworks, Low Incidence Disability, LID, Functional Scheme Assessment, resonance board, Lilli Nielsen, online learning, Continuing Education Unit, CEU, Communication Matrix, INSITE, Train-the-Trainers

Active Learning Online Modules

TSBVI Outreach, in conjunction with the Perkins School for the Blind and the Penrickton Center for Blind Children, has completed a set of Active Learning online courses! These courses offer a guided, self-paced approach to become familiar with the massive amount of information contained on the “Active Learning Space” website (http://activelearningspace.org) and will help learners become familiar with the basics of Active Learning. They also offer credit (CEUs) for your time. A link to sign up can be found at http://activelearningspace.org/courses. Currently, there are two Active Learning courses available online: “Principles of Active Learning” (12 CEUs) and “Functional Scheme” (3 CEUs). Additional courses are currently in development and include topics such as program planning and implementation, documenting progress, materials selection, and the proper use of perceptualizing aids. Currently, 421 people have enrolled in “Principles of Active Learning”, and 125 people have completed it. So far, 68 people have enrolled in the more recent addition, “Functional Scheme”, and 16 people have completed that course.

Here is what one teacher shared in an email regarding the “Principles of Active Learning” online course:

“The lessons I’m doing are so eye-opening and revelatory. This experience is a Godsend for me...I have 9 students that are benefitting from this training.”

New postings on activelearningspace.org:

Developing District Capacity in Active Learning

Educational Service Centers in Texas and TSBVI Outreach continue to support a number of districts around the state in ways to incorporate Active Learning techniques in their classrooms. Teams continue to share videos, meet in person or via videoconference, and review sections of the current offerings from the Active Learning Space website, http://activelearningspace.org. Each team continues to learn and grow along with their students at a pace that works for them.

AL

Photo Caption: A young boy interacts by looking at and reaching for an object while playing independently in an Active Learning environment created for him by his team of educators. This team is involved in developing active learning skills with guidance from their Education Service Center Consultant and TSBVI Outreach.

TSBVI hosted “Active Learning: Train-the-Trainers”, designed and presented by Kate Hurst on January 31st, 2019. Participants familiar with all things Active Learning were presented with materials to to help them facilitate training and use of Active Learning throughout Texas; 19 out of 20 regions in Texas were represented. Potential trainers from other states, including Kansas and New England, were also present. Training materials included a notebook, electronic powerpoints, and guidance on how to use theses materials in conjunction with the Active Learning Space website and the online courses. TSBVI hopes to continue to facilitate this training as the need arises.

Active Learning Equipment Available for Loan!

The TSBVI Tech Loan Program has ordered and received new Active Learning equipment to provide more opportunities for use by districts. These materials can be borrowed by any district in Texas for up to 3 months, free of charge. This is a great way to determine whether a particular piece of equipment is appropriate for a student prior to purchase. Available items include:

  • Bead chain holder
  • Essef board
  • Essef board stand
  • Grid holder
  • HOPSA dress size 1
  • HOPSA dress size 2
  • HOPSA dress size 3
  • HOPSA dress crossbar and link
  • HOPSA dress block and tackle
  • Small Little Room
  • Full Little Room
  • SPG Board
  • Support Bench
  • Tipping Board

For more information about these items, visit http://activelearningspace.org and click on the “Materials” tab and then on “Things You Can Buy.” To make a tech loan request for an available item, download an application at http://www.tsbvi.edu/technology-loan-program and fax it to TSBVI Outreach, Attn: Tech Loan at 512-206-9320. Note that you will also need to provide a tech evaluation that demonstrates student needs. The Functional Scheme Assessment works very well for this!

You can also find information on purchasing Active Learning materials from LilliWorks, the only authorized dealer of these items in the United States, at their website, www.lilliworks.com, under the tab, “AL Items”. For more information, contact Sara Kitchen at .

Notes from the International Active Learning Forum

The International Active Learning Forum met again on November 8th, 2018. If you are unfamiliar with this group and its mission, please see the previous Active Learning Update article in the Fall/Winter 2018 issue of TX SenseAbilities: https://www.tsbvi.edu/fall-winter-2018-issue/577-tx-senseabilities/fall-winter-2018/5939-what-s-happening-with-active-learning. During the November meeting, plans and updates were discussed regarding the following priorities:

  1. Updating the Functional Scheme; making it accessible and understandable to today’s teachers.
  2. Getting the word out regarding Active Learning online training materials available for credit.
  3. Looking into and bolstering efforts to provide research that supports the efficacy of Active Learning.
  4. Connecting those who specialize and train others in Active Learning.
  5. Share training resources that have been developed.

Scott Baltisberger and Sara Kitchen, TSBVI Outreach, will continue their exploration of developmental assessments that align with the Functional Scheme in the area of communication, a section of the Functional Scheme that Lilli Nielsen herself defined as a work in progress. Currently, they are comparing skills and developmental milestones from the INSITE checklist and the Communication Matrix with the communication section of the Functional Scheme. They will share their findings with the international group for review.

Active Learning Face-to-Face Training Events:

  • Active Learning at the Statewide LID Conference

Scott Baltisberger and Sara Kitchen, with the assistance of educational teams from Regions 11, 13, 14, and 20, presented on Active Learning at the Low Incidence Disability Conference in Corpus Christi on March 2nd and 3rd, 2019. Topics included an overview of Active Learning as well as resources for building Active Learning in local education agencies.
Active Learning at TAER in San Antonio
Kate Hurst and Charlotte Cushman will present sessions on Active Learning at the annual conference hosted by the Texas Association for Education and Rehabilitation of the Blind and Visually Impaired, “TAER 2019 Conference: Be the Light”, on March 28-30, 2019 in San Antonio. For more information and registration information please visit http://www.txaer.org/conference.html.

  • Annual Active Learning Conference in June in Dallas

Region 10 Education Service Center is hosting the annual Active Learning Conference on June 10-11, 2019. Patty Orbzut of the Penrickton Center for Blind Children will be presenting. This is a great opportunity to hear and interact with one of the foremost Active Learning practitioners in the country. Details, as they become available, will be posted at https://www.region10.org/programs/low-incidence-disabilities-lid/active-learning/

  • Active Learning Training Opportunity in July in Wichita Falls


In Region 9, Tricia Marsh and Kate Hurst will be presenting a two-day training on Active Learning at ESC Region 9 on July 30-31, 2019. This will be posted to their website in the spring. Check their calendar for information: https://www.escweb.net/tx_r9/catalog/calendar.aspx

 

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.



Adam Graves, DeafBlind Education Specialist, TSBVI Outreach

Abstract: The author describes our body’s response to stress and how we learn and support self-regulation. He also gives caregivers information to guide their children, especially young children and those with sensory impairments and multiple disabilities, on their own paths to self-discovery, self-regulation, and resilience.

Keywords: stress, hormones, internal teddy bear, self-regulation, co-regulation, resilience, interdependence, emotional development, social development

In her TED talk entitled How to Make Stress Your Friend, Dr. Kelly McGonigal describes the physiological changes that take place in the body in response to a perceived threat or stress factor (McGonigal, 2013). She describes the process in which the body releases hormones such as adrenaline and cortisol that help trigger the fight, flight or freeze response. She also describes new studies which suggest that by simply changing our perception of stress, from thinking of it as being harmful and damaging to our health to thinking of it as a process that helps our body prepare for a threat, it can help change the actual physical effects that stress has on our body (Abiola Keller et al., 2012, Jamieson et al., 2012). For those of us who have been taught about the negative effects that prolonged periods of stress can have over time, it is encouraging to know that by reframing our perception of stress we can reduce some of the negative physical effects that it may have on our mental and physical health. But how do we learn to change our own perceptions of stress? And how do we teach our children, who may not even possess the language to describe the concept of stress, to deal with and reduce the physical effects it can have? The answer may be found in the ways in which we connect with each other.

Dr. McGonigal explains that in addition to hormones such as cortisol and adrenaline that prepare us to engage in a fight, flight or freeze response, the body also produces oxytocin when we experience high levels of stress (McGonigal, 2013). Oxytocin aids in helping to relax the tension in our muscles including our heart and blood vessels. It is the same chemical that is released in response to prolonged periods of positive contact with other people. Consequently, oxytocin is the chemical that is most often associated with emotions such as love, intimacy, and bonding. Dr. McGonigal describes the release of oxytocin during periods of stress as the body’s built-in defense mechanism to combat the potentially harmful effects of the stress response on the body (McGonigal, 2013). What does that mean? It means that in order for the oxytocin to effectively do its job, we need to have someone we trust around to give us a cuddle. Then the oxytocin can reduce our heart rate, relax our muscles, and transfer the control of our cognitive functioning from the reactionary amygdala to the executive functioning frontal lobe of our brain.

As infants, we are completely dependent on others to help us stay alive. Any new or unfamiliar person or experience has the potential to be life-threatening. Consequently, we are totally reliant on others to help us regulate our bio-behavioral state. When we communicate our increased level of distress by crying, our caregivers respond by increasing their physical proximity to us in the form of picking us up and holding us close to their bodies. They gently hold us, rock us, sing to us, and offer us calming objects such as pacifiers and blankets to help reassure our hyper-responsive little brains that we are in no danger and that we have someone looking out for us. We literally begin to learn how to manage our stress through the process of receiving a cuddle from a familiar adult.

Dr. Suzanne Zeedyk describes this process of attachment and regulation between babies and adults in her book Sabre Tooth Tigers and Teddy Bears: The Connected Baby Guide to Attachment (Zeedyk, 2013). She explains that the more opportunities we have to receive an actual, literal cuddle in response to our fear of threats, such as being eaten by a sabre tooth tiger, the more we learn that even though the world is a scary place, we have people who will be there to protect us, keep us safe, and provide us with comforting teddy bears if we need them. As we continue to grow and develop more formal means of communicating our emotions, we learn how to give and receive figurative cuddles by listening to and sharing our fears, hopes, dreams, and ideas with each other through the use of words and language. This is what we refer to as co-regulation. Dr. Zeedyk describes the feeling of safety that is built up over time through the process of being the recipient of physical and verbal supports as an internal teddy bear. If we have been provided with a healthy and reliable internal teddy bear, we can learn to turn to it for a figurative cuddle when primary caregivers are not around. This is what we refer to as self-regulation.

In their article entitled Journeys Through the Land of Oz: Parent’s Top Twenty Strategies for Managing Life (Scorgie & Wilgosh, 2002), Kate Scorgie and Lorraine Wilgosh describe the journey of parents of children with special needs as being similar to that of Dorothy in The Wizard of Oz. In the article, the authors refer to the book When the Heart Waits by Sue Monk Kidd in which she describes “tornado moments.” These are times when, like Dorothy, we are all thrust into frightening and unfamiliar circumstances (Kidd, 2006). Scorgie and Wilgosh go on to explain that sometimes, like Dorothy in the land of Oz, we find ourselves completely separated from all of the people and places that help us to feel safe. They then offer strategies for reaching out to others and maintaining a state of emotional stability and self-regulation that caregivers of children with special needs have used to help them strengthen their own internal teddy bears and those of their children.

We will often find ourselves feeling isolated and alone. We may forget how to seek out and receive that cuddle from our internal teddy bear. And sometimes the cuddle from our internal teddy bear is not quite enough to help us manage our level of distress. Like the land of Oz, a prolonged state of distress can be a very confusing and scary place. Many of us set out, like Dorothy, to face our fears on our own either because we have been encouraged to demonstrate our “independence”, or because venturing forth alone sometimes seems easier and less frightening than trusting someone new and unfamiliar. Though she set out alone on her journey to find the wizard who could return her to the safety of home, Dorothy was only able to complete her journey through Oz and return to her family and friends in Kansas because she made the courageous decision to trust others along the way.

The scarecrow, the tin man, and the lion that Dorothy met on her journey were all living independent lives. Each one was free of reliance on others to sustain themselves physically. However, each one was isolated and alone in their independence because, in different ways, they all lacked the inner strength to face the world outside their little corner of the land of Oz. Through their interdependence on each other, they were able to gain the resilience they needed to try new things and rise to new challenges. Eventually, all the characters who journey through Oz with Dorothy learn that the individual attributes they each thought that they lacked were actually within them during the entire journey. Together they were able to overcome all the fears that arose from confronting witches, wizards, and flying monkeys to reach the safety of the Emerald City and help their friend Dorothy return home to Kansas.

By providing support for each other, the scarecrow, lion, tin man, and Dorothy came to realize that they had the ability to self-regulate by drawing on their courage, brain, heart, and ability to return to the safety of home on their own. However, none of the characters would have found their own inner strength if they had not first learned how to depend on the strength of others to help them co-regulate their emotions and manage the stress of leaving their homes and giving up a little of their independence. It was the strength they learned from each other that helped each one of them overcome their individual fears, manage their emotional states, and continue on their journeys. By learning how to co-regulate their emotions together to face the treacherous and unpredictable obstacles they encountered along the yellow brick road, each individual discovered the self-regulatory part of themselves that they had failed to recognize for so long.

Everyone needs to feel safe, and we don’t feel safe if we don’t feel like we have someone we can trust. For very young children and children with sensory impairments and multiple disabilities, this may be particularly challenging as there are often unfamiliar people interacting with them in ways that are often unpredictable. Many children with disabilities experience frequent visits to hospitals and other medical facilities. Children who are blind, visually impaired or DeafBlind often experience the emotional distress of finding themselves in unfamiliar surroundings or situations due to a lack of sensory information and incidental learning. These are experiences that are not only unpredictable; they can also be painful and scary. Children who don’t yet have the vocabulary or conceptual framework to describe the feelings of fear and distress that are induced by these experiences have few options to tell us that they are afraid of the flying monkey or the sabre tooth tiger [sic] or the person with the needle who may be waiting in the next room. Because they often have additional difficulties in reading facial expressions or vocal inflections, it is especially important for infants and children who are blind, visually impaired, DeafBlind or who have other special needs to have the safe touch of a trusted adult available to help their bodies learn to regulate their responses to stress in times when they feel a heightened sense of danger, whether the actual threat of harm is imminent or not.

Even as these children grow older and more independent in other physical aspects of life, the recurrence of calming touch from a caregiver provides a bio-behavioral model that the child’s body unconsciously attempts to emulate. Without the language to express and process their emotional distress, these children will continue to need physical reinforcement to remind their bodies and brains of the physical attributes which create a calm, well-moderated, physical and emotional state. If trusted adults and caregivers can provide physical reassurance to the child that they are safe, it will help the child build resilience. These interactions help children mentally and physically learn how to self-regulate and feel safe on their own by reinforcing the neural pathways in the brain which control the organ and muscle functions in the body that help them remain calm in times of danger or distress (Center on the Developing Child, 2011). With the practice that comes from having someone respond to their stress or check on their bio-behavioral state with a calm and supportive demeanor, the child’s brain and body continue to strengthen the memory of being successful in regulating itself in response to stress. They begin to build a more reliable internal teddy bear. As the child’s internal teddy bear grows stronger, so too does their social, emotional and physical development and the quality of their INTER-dependence with others.

Just like the characters in the land of Oz, none of us can learn to self-regulate, manage our own heightened feelings of distress or face our fears on our own. We all need someone we can trust to teach our bodies how to remain calm in the face of fear or unpredictable challenges. Our emotional independence, and that of our children is only possible when we learn that we can, and must, depend on the emotional support of those around us to help us to continue moving forward on the path of self-discovery, self-regulation, and resilience. As Dr. McGonigal explains, our body reminds us of this biological need for co-regulation by producing oxytocin every time we begin to experience any sort of stressful situation or emotion in our lives. So the next time you or someone you know seems sad or mad or scared, just remember that somewhere in the mix of hormones telling you to run away there’s also a little chemical teddy bear that is reaching out for a cuddle.

Photo of a teddy bear

References

Center on the Developing Child at Harvard University. (2011). Building the Brain’s “Air Traffic Control” System: How Early Experiences Shape the Development of Executive Function: Working Paper No. 11. Retrieved from www.developingchild.harvard.edu.

Jamieson, J.P., Nock, M.K., & Mendes, W.B. (2012). Mind over matter: Reappraising arousal improves cardiovascular and cognitive responses to stressJournal of Experimental Psychology.

Keller, A., Litzelman, K., Wisk, L.E., Maddox, T., Cheng, E.R., Creswell, P.D., & Witt, W.P. (2012). Does the perception that stress affects health matter? The association with health and mortalityHealth Psychology.

Kidd, S. M. (2006). When the heart waits: Spiritual direction for life’s sacred questions. San Francisco: Harper San Francisco.

McGonigal, K. (n.d.). How to make stress your friend. Retrieved from https://www.ted.com/talks/kelly_mcgonigal_how_to_make_stress_your_friend

Scorgie, K., & Wilgosh, L. (2002, November). Journeys through the land of Oz: Parents' top twenty strategies for managing life. Exceptional Parent.

Zeedyk, S. (2013). Sabre tooth tigers & teddy bears: The connected baby guide to attachment. [Pamphlet]. Dundee: H.B. Rutherford & Co.