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  1. Obtain pre-service coursework in DeafBlindness that is aligned with professional standards.  
  2. Stay current in the field by:
  • Maintaining a sustained focus on state and national efforts in product development, research, political efforts and resources.      
  • Participating in ongoing in-service to increase skills in the area of DeafBlindness.
  • Joining and participating in organizations that focus on DeafBlindness.  
  • Maintaining a resource library on pertinent information on DeafBlindness

3.  Contribute to the field of DeafBlindness by:

  • Participating in the ongoing development of appropriate assessment and instructional methods and materials for children with DeafBlindness
  • Building a body of research that supports appropriate programming for this population.
  • Increasing local capacity by working with administrators and families to identify and access in-service training in this unique area of special education
  • Mentoring new itinerant TDBs through the Texas School for the Blind and Visually Impaired Teacher of DeafBlind Mentor Program
  • Participating in local, regional and state comprehensive planning activities system improvement with the Educational Service Center’s DeafBlind Specialist and the Texas DeafBlind Project  

4. In local district, serve as part of the group of qualified professionals in determining if a child meets federal and state eligibility for DeafBlindness.   

5. During the FIE process, assist other professionals with the use of appropriate evaluation tools for students with DeafBlindness. Provide input into the evaluation results as they relate to DeafBlindness and develop appropriate programming recommendations.            

  • Participate in Functional Behavioral Assessments          
  • Provide information regarding the impact of the child’s etiology on learning style and behavior          
  • Evaluate the impact of the child’s vision loss on the acquisition and use of preferred mode of communication

6. Participate in all IEP or IFSP meetings to insure appropriate programming and services specific to DeafBlindness.          

  • Accommodations for state mandated testing          
  • Behavior Intervention Plans          
  • Provide the families with information regarding services for students with DeafBlindness from state agencies  

7. Provide direct, indirect and consult services to the child with DeafBlindness, educational teams and families.   

8. Support the intervener model in the district by:

  • Providing the team and administrators with information about the model
  • Determining the need for an intervener
  • Providing in-class support to the intervener  

 

9. Assist local district in child-find activities for students with DeafBlindness and in the completion of the annual TEA Deafblind Census.  

 

From 2012-2013 Texas Deafblind Project TDB Committee

TDB Flowchart download   

By Craig Axelrod, Teacher Trainer, TSBVI, Texas Deafblind Outreach

Abstract: Educators can have more positive, responsive and reciprocal interactions with their students who are deafblind by learning how to modify their own interactive behaviors and adapt the interactive context. High quality interactions contribute to improved educational outcomes for students with deafblindness.

Key Words: programming, deafblindness, Jan van Dijk, research-based, interaction, behavior, communication, educator-oriented intervention, instructional strategies, video analysis

Part One of this article, which first appeared in the Fall 2004 edition of SEE/HEAR, summarizes research-based conclusions about the importance of high quality interactions with students who are deafblind. From that research, and other resources, Kim Conlin, Tish Smith (communication specialists at TSBVI) and I designed a two-day training for TSBVI educational staff. In Part Two, this educator-oriented training process is described. When it was originally published, in the Winter 2005 edition of SEE/HEAR, four trainings had been facilitated, with four participants in each training. At the time of this revision (February, 2008), seven trainings have been facilitated at TSBVI, and regional trainings in two other Texas cities have also been held.

 

The Interaction Training Process at TSBVI

When determining who will be invited to participate in interaction training, we consider interested staff who are teaching students with deafblindness and understand the basics of good programming, such as structuring a routine and using a calendar system. They have interactive challenges with their students that we want to address. Staff may also be teaching newer students we want to better understand. The students represent a variety of abilities and needs.

 

Introduction to the training model:

The educator-oriented learning goals of interaction training are to:

  • Understand the role of high quality interactions in early development
  • Understand the challenges to high quality interactions with children who are deafblind
  • Identify student-specific factors that impact interactions
  • Recognize the components of interaction
  • Analyze the interactions between adults and students who are deafblind
  • Identify and implement intervention strategies that improve the quality of those interactions

 

Several weeks before interaction training, participants are asked to notice and think about the interactions they have with their students, then bring those observations and questions to the first day of training. As the training progresses, and more is understood about the unique characteristics of deafblind children, interactions with deafblind children in general, and with their students in particular, concerns, goals and possible intervention strategies for improving the quality of those interactions become more refined and specific.

On the first morning of training, after introductions and clarification of the learning goals, information is presented about interaction problems and possibilities of students who are deafblind (as described in Part One). To help exemplify these ideas, participants view and discuss the videotaped interactions between a student and three adults. The three interactions are clearly very different, and the student's abilities also seem to differ. An Interaction Data form is introduced as a tool to help graphically represent those differences.

 

Interaction data

The Interaction Data form codes these components of an interaction:

    • Description of Turns: Each interactive turn is briefly described. This enables the people coding to quickly match information seen on the video to its corresponding location on the Interaction Data form.
    • Interactive Turns: Each turn is assigned a letter, A-F, based on the six observational categories identified by Rick van Dijk and his colleagues.
      1. Student Initiates: the student's action is directed at the adult in order to influence the adult's behavior
      2. Student Responds: the student responds to the adult
      3. Student Acts Independently or No Response: the student acts without an intent to influence the adult's behavior, or does not respond to the adult
      4. Adult Initiates: the adult's action is directed at the student in order to influence the student's behavior
      5. Adult Responds: the adult responds to the student
      6. Adult Acts Independently or No Response: the adult acts without an intent to influence the student's behavior, or does not respond to the student
    • Connecting Consecutive Turns: Arrows are drawn between "related" consecutive turns, reflecting the duration of an interaction on a particular topic.
    • Interactive Behaviors: Each turn of the student or adult is then assigned one or more numbers, 1-8, corresponding to behaviors that describe the turn's interactive qualities. These interactive behaviors are adapted from the eight core categories of behavior as defined by Marleen Janssen and her colleagues.
      1. Initiatives: starting an interaction or bringing up something new as part of an answer
      2. Confirmation: clear acknowledgement that a partner's action has been noticed and recognized
      3. Answers: a positive or negative response to the partner
      4. Turn Taking: becoming the actor
      5. Turn Giving: allowing or encouraging the partner to become the actor
      6. Attention: focusing on the partner, the content of the interaction, or the individuals and/or objects within the interactive context
      7. Regulation of Intensity of the Interaction: for the student – appropriate or inappropriate interaction; for the educator – waiting while the student regulates intensity, or regulating behaviors that influence the student's intensity (such as proximity to the student [e.g., nearer, further away], pacing [e.g., faster, slower], animation [e.g., facial expression, size of movement], voice [e.g., inflection, volume] and amount or type of touch [e.g., frequency, degree of forcefulness])
      8. Affective Involvement: sharing positive emotions with the partner

    (If during an interactive turn, the student or adult "acts independently or gives "no response," C or F, no interactive behaviors are credited.)

     

    Interaction Data Form

 


Interaction1


B is 19 years old and has microcephaly secondary to an encephalocele (a congenital protrusion of the brain through a cranial fissure). He's legally blind with a cortical visual impairment, is suspected of having a hearing loss, and has multiple disabilities that include mental retardation and cerebral palsy.

Coded video fragments from B's three interactions are analyzed, to identify and compare components of the interactions that reflect their different characteristics and result in his varying degrees of interactive competence. This activity also familiarizes participants with the Interaction Data form. Later in the training, they will use the form to code and analyze video fragments of their own interactions.


interaction2


 

B and the teacher - stretching on the therapy ball: The teacher talks to B twice in this fragment, but acts independently during the other turns. He prepares to move B, positions him on the therapy ball and stretches parts of his body with no interactive behaviors, no expectation for B to take a turn and no connected turns.


 interaction3


B and the teacher aide - eating lunch: The aide is attentive to B, and waits until he's ready before offering a bite of food. B responds once by accepting the spoon (answering "Yes") and once by rejecting it (answering "No"). When he refuses the food, she confirms his response by putting down the spoon and getting the milk cup. Turns in both of these sequences are connected. She acts independently by wiping his mouth. There is no observed enjoyment (affective involvement) of the interaction.


 

 

(Originally published in the Spring 2006 SEE/HEAR Newsletter)

By Robbie Blaha, DeafBlind Specialist, Texas Deafblind Outreach with help from Kate Moss(Hurst), DeafBlind Specialist, Texas DeafBlind Outreach

Abstract: Students with DeafBlindness who participate in the general education curriculum face some unique challenges. This article discusses these issues and proposes some strategies for addressing these concerns.

Key words: Programming, DeafBlind, general education curriculum, intervener, concepts, IEP


Who are we talking about?

Though instruction for many students with DeafBlindness is focused more on life skills or functional skills, some students with deafblindness are in regular education classes or a combination of regular and resource classes. These are the students we are focusing on in this article. They are learning from the general education curriculum, and are presented the same concepts as their peers, even though they may not have the ability to deal with these concepts similarly because of the impact of their DeafBlindness. Even in resource classes, which typically have fewer students and curricular content at least two years below grade level, there are some important considerations for the student with DeafBlindness.

Things to consider:

There are a number of considerations for students with DeafBlindness who are participating in the general education curriculum, even if they are working below grade level.

Access to information

“For a student with deafblindness, the combined effects of the vision and hearing loss create a barrier that significantly impedes the ability to gather information from the environment. This causes chronic difficulties with incidental learning and concept development. Students cannot learn what they do not detect, and they may be unaware of what they are missing. Access to information is a primary issue for all students with DeafBlindness, and should be addressed in each IEP.”

Rate of instruction

In either regular education classes or in resource classes, the typical rate of instruction can occur too rapidly for the student with DeafBlindness to completely process it. Additional processing time is a requirement for this student to be able to gather and interpret information. For students with normal vision and hearing, this process occurs spontaneously.

Unfamiliar concepts

The Texas Essential Knowledge and Skills, or TEKS, comprise the state-mandated curriculum that establishes what every student, from elementary school through high school, should know and be able to do (TEA website, 2006.) When providing instruction related to TEKS, teachers can present information that the student with DeafBlindness may not have the background to understand. For example, a lesson in Texas History can cover a period of time in the 1840’s when cattle drives were common through northern Texas. In order to find meaning in this lesson, the DeafBlind student needs to understand the concepts of an event occurring 160 years ago, that the map of Texas represents a state he lives in, the meaning of the word “drive” as it is used in cattle drive, and what the terms “cattle” and “herd” mean. He would also probably need to know why any one would want to drive cattle from one place to another. This lesson, like most that take place in general education curriculum, would progress at an alarming rate with ever more complex information being shared, and make it very difficult for the deafblind student to keep up.

An additional problem occurs when the teacher clarifies new information being offered in a lesson by using what would be familiar examples for the typical students, but may not be for the student with DeafbBlindness. For instance, the science teacher presents oxidation as a “chemical change brought about by exposure to oxygen” and uses rust on an old car as an example of slow oxidation. While the example helps the class better understand the new information, the student with DeafBlindness is unfamiliar with rusty cars. Rather than clarifying the new information, the example has just increased the amount of unfamiliar information the student has to juggle in the class.

Adaptations, accommodations and/or modifications cannot completely resolve these problems

The student’s IEP adaptations, accommodations and/or modifications may include large print, an FM system, frequent comprehension checks, preferential seating, reduced assignments (meaning 10 vocabulary words rather than 20) and assistance from an intervener. While all of these are critical in assisting the student to gather information, there is still a demonstrated need for the curriculum to be modified. The modification of the curricular content may involve reducing and prioritizing the information that the student is responsible for learning. The goal is for the student to have the information that provides a useful working knowledge of the curricular content.

Concerns about the “other stuff” the student does not know

There is ongoing evidence that the student with DeafBlindness is lacking a body of information that may be considered an extension of the expanded core curriculum that is taught to students with visual impairments.

Basic environmental/cultural facts: Other students possess an incredible amount of knowledge about their immediate environment and teen culture that would be very useful for the student with DeafBlindness. The student may not know, but would benefit from knowing things like: What is a mall? Who is Lance Armstrong? What are some popular bands/songs that teens like? How do you buy a soda at school?

Social skills that encourage good relationships: Many students with DeafBlindness miss out on basic social skills that other nondisabled students get incidentally. Examples of these skills include such things as: How do you greet people (peers, adults, strangers)? Where do you sit in the cafeteria if you want your peers to interact with you? How do you respond if a classmate tells you that she has been sick?

Self advocacy skills: students with DeafBlindness need to know how to get other people’s support in gaining access to the environment and to learning. They need specific instruction in self-advocacy. Examples of these skills include things like: how do I explain to others how to use my FM system, or let the teacher know that he or she needs to turn the microphone on or off? How do I ask a peer to give me sighted-guide so I can get through the crowd at the pep rally? How do I let someone know I don’t understand the instructions on a test?

WHAT CAN GO WRONG?

There are many things that can happen to prevent the student with DeafBlindness from appropriately accessing the general education curriculum in these settings. Here are some problems we often see:

    • The intervener is given sole responsibility for adapting the information that is being presented in the classroom. Often times he/she is left to choose and attempt to explain the information to the child as the rest of the lesson flows past.
    • Sometimes the student ignores the teacher and the teacher ignores the student. This may happen because the teacher thinks the intervener is the only adult who is supposed to be involved with the student. At other times it may be the student who perceives the intervener as the only source of credible information.
    • There is no real expectation that the student will learn anything of substance from the general curriculum. Unfortunately for the student with DeafBlindness, some people think it is enough that the deafblind student is sitting in the classroom with typical peers. They may think it is acceptable that the  student with DeafBlindness only memorizes facts and never really understands the concepts needed to finish homework or to take tests independently. The intervener or others often do most of the assignment and give the student some bits of it that he/she can do with existing skills.
    • The student does not have time in the day to do the critical concept and skill development that truly brings understanding to the student and increases social skills and independence. For most students with DeafBlindness, additional time for this work must be provided by scheduling a study hall period or having regular time provided throughout the day for this work to be done. All too often, this extra time is not provided in the student’s schedule, so he/she is scrambling to participate in the class with the other students.
    • The student is not participating in making sure his/her adaptations are in place. Too often a student with DeafBlindness finds his/herself in a learning situation without the supports he/she needs, and makes no effort to advocate for that support to be provided. The intervener or the teacher takes all the responsibility for making sure the adaptations are in place for the child. When the student becomes dependent on someone else to magically supply the adaptations he/she needs, what happens when that person is out sick? Self-advocacy skills need to be taught. Being able to ask for what you need is just as important as having that support provided to you.

What should happen?

To gain a useful bank of information from the Texas Essential Knowledge and Skills (TEKS), there are a variety of things that should be considered. First of all, the amount of information the child will be taught needs to be reduced by prioritizing critical concepts. Separate lesson plans need to be developed to teach underlying concepts that support learning the general curriculum. In addition, the student must have instruction in critical concepts and skills that build relationships, independence, and an understanding of the world around them.

How do we make that happen?

  1. Modify the general curriculum.
    • Each regular education teacher and resource teacher should select the main points that are critical for the student to learn.
  2. Select the appropriate items from the expanded core curriculum.
    • The TVI, through interviews with each team member as well as discussions with and observations of the student, should guide the team in selecting the environmental information and social skills to be taught.
  3. Resolve logistical considerations.
    • Time is provided in the student’s daily schedule for learning concepts related to the general curriculum and items from the core curriculum.
    • The team decides which person will be responsible for providing the instruction in each setting, and also who will take on the responsibility for materials preparation.
    • A plan is made related to accessing the community as part of instruction as it is needed.
  4. The IEP is written to specify how all of the above areas will be addressed and by whom.
    • For example, the TVI may take on responsibility for Brailling all materials, but the intervener will adapt other materials under the guidance of the TVI. That needs to be spelled out so that every team member is clear about whose responsibility it is to take care of producing the materials. If the student needs additional time to work on concept development, time will need to be carved out of his/her schedule, perhaps as a study hall period. The intervener needs to know what concepts to work on with the student, and how the instructor would like to approach those concepts. If these things are left to chance, it is typically the student who suffers.

Conclusion

A student with DeafBlindness who participates in the general education curriculum, either in general education classes or resources classes, has very complex challenges in accessing the curriculum and benefiting from these programs. For the student to be successful both academically and socially, the supports provided and the content of the program need to be well orchestrated by the student’s educational team. Providing the student with an intervener may be necessary. However, the intervener needs to be part of a coordinated team effort, and not given the total responsibility for figuring out and implementing that support for the student. Providing support to the student in general education settings can be incredibly challenging, but if done well can lead to excellent outcomes for a student with DeafBlindness.

References

http://www.tea.state.tx.us/ssc/teks_and_taas/teks_and_taas.htm (TEA website, 2006. TEKS and TAKS)

(Update 5/7/2015: The original link is no longer valid. Information regarding the Standards-Based Individualized Education Program Guidance can be found at this link: http://tea.texas.gov/Curriculum_and_Instructional_Programs/Special_Education/Programs_and_Services/State_Guidance/Standards-Based_Individualized_Education_Program_Guidance/)

By Melvin Marx, COMS, Houston ISD, Houston, Texas

This article was originally published in the Summer of 2004 edition of See/Hear newsletter.

Abstract: This article provides a sampling of modifications in O&M techniques for use with deafblind students.

Key words: programming, orientation and mobility, O&M, deafblind, modifications, orientation and mobility techniques

Do you have indelible memories of your collegiate experience? As a graduate of Stephen F. Austin State University in the field of rehabilitation, majoring in orientation and mobility, I frequently think back on many positive memories. I fondly remember the orientation and mobility practicum lessons under blindfold in downtown Lufkin, the chaotic noise of twenty five Perkins Braillers hammering out inharmonious melodic lessons in the Braille 301 class, or waking up at 8:10 for Dr. Weber's 8:00 Rehab classes. Do these memories ring a bell? These may be a few of your favorites as well. For me, each memory holds a special place in the journey of what makes me who I am.

I believe that for all orientation and mobility professionals one memory that makes a lasting impression in the field of O&M is the study of the "Blue Book." The "Blue Book" is officially entitled Orientation and Mobility Techniques: A Guide for the Practitioner. Written by Purvis Ponder and the late Dr. Everett "Butch" Hill, the "Blue Book" is chock-full of precise technological application on every pre-cane and cane technique known to the O&M field. This book is a point of reference for every O&M who has reached out to teach and empower the life of a visually impaired or blind student. If the O&M profession had a bible, the "Blue Book" would be it.

Full of confidence and success in my "Blue Book" knowledge and teaching strategies, I continued along teaching fellow coworkers and students in the utilization of proper O&M techniques. I continued on my daily crusade of furthering my students' independence until one day when I received a phone call from my supervisor. She instructed me to go and evaluate a new student who was entering our program. This particular student was totally blind and profoundly deaf and yet cognitively on target with his age. As I began working with this student, I quickly came to a shocking reality. My method for teaching the "Blue Book" techniques to this student was functionally impossible.

Needless to say I did continue working with this student and eventually had many success stories in relation to developing his understanding of O&M concepts and the purpose for their use. I have also discovered that, as the years have gone by, I have evaluated and picked up more of these students for O&M service. Tragically, however, I have come to find out that this population of students is highly underserved. Probably the largest reason has to do with the lack of preparation and schooling in this specific population. When it comes to teaching students with dual sensory impairments of vision and hearing, we in the O&M field must be willing to step out of the box of standardized teaching. Modification of what we have learned from the "Blue Book" must become our mantra.

The information that follows is a sampling of a few modifications to the O&M "Blue Book" techniques. I hope you find this material helpful as you assist your deafblind students in achieving the highest level of independence that they deserve to reach.

  • In teaching sighted guide the traditional method can be taught having the student holding on to the guide's arm just above their elbow. For younger students the grip will have to be modified to holding the guide's index finger or wrist depending on height and strength needs.
  • For more receptive communication to assist the student's knowledge of what is coming up in his/her environment, move the student's sighted guide position to a hand under hand guidance. This method will allow the guide to wrap his/her thumb on top of the student's hand for more proprioceptive feedback. The examples listed below should be given to the student right before the requested movement takes place:
  • Left turns: hand movement goes twice towards the left.
  • Right turns: hand movement goes twice towards the right.
  • Ramps: Angle hand 45 degrees in a descending or ascending direction depending on how you are traveling on the ramp. Give an upward or downward hand motion, in the 45-degree position, twice to indicate the direction of the ramp.
  • Straight ahead: a forward surge of the hand given in intervals depending on the length of the straight travel.
  • Stop: hand moves from a 0 degree position to a 90 degree position. Pause in the stopped position to relate the requested action to the student.
  • Advanced directionality: This is for students who are emerging in their understanding of sign language. The directions left and right can be signed with an "L" or "R" in the student's hand to communicate which direction they are being requested to take.
  • Up: hand movement goes twice in an upward elevation.
  • Down: hand movement goes twice in a downward elevation.
  • If some students need more proprioceptive feedback to grasp the concepts of up and down, have the hand under hand guidance also establish contact at the guide's waist. This will give additional communication to the student to the length of the step up or drop off.
  • Touch cues have additional communication benefits for students who are utilizing adaptive mobility devices or for those who are engaged in trailing activities. These examples should be given to assist the student in understanding movement they are being requested to initiate.
  • Left turn: Using your index and middle fingers, make a sweeping motion down the student's left upper arm.
  • Right turn: Using your index and middle fingers, make a sweeping motion down the student's right upper arm.
  • Straight: While standing behind the student, make a sweeping motion across the student's shoulder with the side of your hand. Your pinky finger should be the only finger of contact on the student.
  • Stop: Place your hand firmly on the student's upper shoulder.
  • Squaring off: You will need to have good rapport with your student for this modification. The reason for this is because you will be physically maneuvering his/her body into a correct positioning initially. After using the stop touch cue, drag your index and middle fingers down the middle of the student's back to indicate squaring off. Position the student so that their shoulders and feet are touching the wall in the correct squaring off position. Then give the student a positive "good job" touch cue by patting them on the shoulder.

For all of these modifications the key is repetition. Remember, Rome was not built in a day. Your students will need these modifications routinely in order to gain understanding of their purpose and meaning. May these initial modifications assist you in teaching your children to develop to the fullness of their O&M potential.

Editor's Note: Melvin Marx graduated from SFASU in 1991. He has worked both in the rehabilitation and educational fields. He has received specialized training in the area of deaf-blindness from The Helen Keller National Center in Sandspoint, New York. For the past twelve years Melvin has been employed by Houston ISD. His specialty areas of training include the multiply impaired and deafblind populations. You may contact Melvin by email: 


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Last Revision: September 1, 2010

Marina McCormick, M.Ed., Region 4 Regional Day School Program for the Deaf Coordinator

Originally published in the Spring 2015 edition of TX SenseAbilities.

Abstract: The author discusses ways local school districts can serve students with deafblindness. She emphasizes collaboration, putting the student first, rewarding outstanding staff, and including the student as part of the local community.

Keywords: deafblindness, administrators, collaboration, inclusion.

When most people encounter the word deafblindness, the first image that comes to mind is one of Helen Keller and her teacher, Anne Sullivan. Thanks in large part to Keller’s articulate and thoughtful nature, the groundbreaking duo challenged public perceptions regarding what was possible for people with multiple disabilities.

Although Keller’s life is an inspiration to many, the reality of deafblindness is more variable than originally understood by those outside the education arena. This variability within deafblindness comes from many factors. For example, children experience variations in their hearing and vision losses. One child with deafblindness may exhibit excellent use of his residual hearing and struggle with nearsighted vision while another may have better visual acuity but have profound hearing loss. Other factors that lend themselves to the diversity within deafblindness include the child’s cognition, sociological factors, communication modalities, social-emotional development, and technology skills. Children with deafblindness, through the very nature of their disability, require individualization to meet their needs.

It is the full realization of individualization, though, that many public school instructional teams struggle with when serving a student with deafblindness. An instructional team may encounter an individual with deafblindness for the first time and may grapple with how to provide that individual with access to the curriculum. From these tremendous efforts emerges a false belief that the student with deafblindness cannot be successful in the public school setting and should be sent elsewhere for his or her instructional needs. This notion can be countered, however, with a strong education administrator leading the team.

The following are five tips for administrators as they lead their teams to greatness for students with deafblindness.

1. Develop a deep understanding of the student’s needs.

In order to effectively lead the team that will provide services for the student with deafblindness, the administrator first must become highly knowledgeable regarding the student and the student’s academic and functional needs. Deafblindness is a disability that relates to access. How will the student access the curriculum, the environment, or the social network of the campus? Familiarize yourself with the student’s audiological and vision reports. Learn about how the student communicates and what accommodations and modifications the student requires. Become knowledgeable about the student’s daily living needs. The student’s multidisciplinary team (which could include teachers for the visually impaired and/or deaf, an orientation and mobility specialist, general education teachers, and others) or other campus personnel will, in most cases, contact the administrator first when questions arise related to the student’s services. Without possessing a thorough knowledge of the student’s disability and programming, an education administrator cannot sufficiently answer the question that underlies all other questions: Why are we doing this?

2. Know the team. Be the team. Lead the team.

Ronald Reagan once said: “The greatest leader is not necessarily the one who does the greatest things. He is the one that gets the people to do the greatest things” (Goodreads, 2015). Individualizing services for a student with deafblindness undoubtedly is one of the greatest things an education administrator will ever ask his or her team to do. Therefore, it is critical to identify the team that will serve the student. List every service and support the student requires and align the student’s needs with your current staff, categorizing staff members as core team members (frequent interaction with the student) or extended core team members (infrequent interaction with the student). Form a strong relationship with the student’s parents or guardians; they, too, are a part of the student’s core team. Identify the strengths of your team and those areas in which your team will need additional training. Establish regular meeting times for both the core team and the extended team. Be actively engaged in meeting and learning with the team.

3. Be student centered.

In the era of high-stakes testing, educators too often want quick solutions to their instructional problems. Effectively serving students with deafblindness is a marathon, not a sprint. The instruction for a student with deafblindness requires coordinated attention between the student and the teacher, both coexisting in the here and now. What this translates into for teachers is that lessons are not traditional and do not lend themselves to typical concepts of school time such as 45 minute class periods. For teachers who are unfamiliar with deafblindness, this can be a cause for concern because they may be unfamiliar with techniques related to differentiated instruction.

When considering programming, all team members will be involved with many e-mails, phone calls, and meetings. IEP meetings may be extremely long due to the number of services and service providers a student may need. The preparation and instruction for the student will be intensive for staff. Ongoing professional development will be needed. With all of this happening, it is essential to champion the purpose behind why the team is working so hard.

4. Reward outstanding staff contributions.

As your staff rises to your high expectations for high quality instructional services and support for the student with deafblindness, recognize and reward their achievements. These achievements do not need to be momentous occasions. Small wins such as collaborative efforts, instructional strategies, or consistency in providing excellent service and support are just as important. Have you noticed that your intervener and interpreter are working together to provide linguistic and conceptual support for a complex biology lesson? Did you observe the adaptive physical education teacher providing a superb accommodation for the student to walk around the track? Reward success often to encourage your team.

5. Remember the community’s trust in your school and in your district.

Often it is tempting for a team to want to focus on what it cannot provide, rather than what it can provide, for the student with deafblindness. Keep in mind this essential truth: The student and the student’s family are valued members of your community, and they have placed a great time-honored trust in you and your school’s abilities not only to meet, but to exceed, their expectations. According to Jay Gense, former director of the National Center on Deaf-Blindness, 95% of students with deafblindness nationwide are living at home with their families and attending school in their communities (Gense, 2015). Your team, in most cases, can fulfill the needs of a student with deafblindness through creative problem-solving and open lines of communication. It is up to you as the administrator to foster the belief of “Yes, we can!” rather than “No, we can’t.”

Concluding Thoughts

It is not often that a student with deafblindness crosses a school’s path, but when he or she does, the possibilities for learning for the student and the student’s team are endless. Students with deafblindness have an uncanny ability to stretch our professional understanding of what is educationally possible within the public school setting. They desire to achieve their goals and dreams as much as any other students, and even though we may not necessarily have a direct line in some cases as to what those aspirations are, these hopes exist nonetheless.

As Helen Keller said in The Story of My Life, “One can never consent to creep when one feels an impulse to soar” (Keller, 2002).

Educational professionals are aware of the requirements under IDEA that each child in special education will have “a full and individual initial evaluation, in accordance with §§300.532 and 300.533, before the initial provision of special education and related services to a child with a disability under Part B of the Act.” 

IDEA notes:

(b) A variety of assessment tools and strategies are used to gather relevant functional and developmental information about the child, including information provided by the parent, and information related to enabling the child to be involved in and progress in the general curriculum (or for a preschool child, to participate in appropriate activities), that may assist in determining—

(1) Whether the child is a child with a disability under §300.7; and

(2) The content of the child’s IEP.

Additionally: 

(g) The child is assessed in all areas related to the suspected disability, including, if appropriate, health, vision, hearing, social and emotional status, general intelligence, academic performance, communicative status, and motor abilities.

(h) In evaluating each child with a disability under §§300.531-300.536, the evaluation is sufficiently comprehensive to identify all of the child's special education and related services needs, whether or not commonly linked to the disability category in which the child has been classified.

It is important that we be sure about how both vision and hearing function in children who we know are deaf or hard of hearing or who are visually impaired or blind, if we want them to be successful in their educational settings.  Children with multiple disabilities certainly need the best possible functioning of their vision and hearing to help them overcome their physical and/or cognitive challenges.  We need to always be asking ourselves as educational professionals, how is this child using his/her vision?  How is he/she using his/her hearing? 

Sometimes we think that a child may have problems with hearing and vision, but for some reason we are not sure.  Perhaps the child has other additional disabilities that make it hard to test for vision and hearing loss, or maybe the child has been getting by okay and is suddenly starting to fall behind.  Whenever we suspect there is something wrong with either of these senses, we MUST follow-up and try to learn more.  Not only because the law requires that we do, but as caring professionals, we want to make sure the child has as few obstacles as possible to learning.  If he or she needs some special accommodations, modifications or instructional strategies, we want to make sure he/she receives them.

This manual was developed to help guide an educational team, especially the Teacher of the Deaf and Hard of Hearing and the Teacher of the Visually Impaired, through a process of checking on the student’s ability to use both of his distance senses so critical in classroom instruction.  These materials are intended as tools.  There is no requirement to use these forms or this process.  There may be other tools that work equally well or better than these.  Please feel free to copy these forms and use them as you like.  Let us know what was helpful and what needs changing. 

About the Development of This Document

This document was developed by a group of individuals over a period of two years between in 2000 and later field tested throughout Texas.  We would like to thank the individuals who gave their time to participate in this process:

Core Group

  • Robbie Blaha, Teacher Trainer, Texas DeafBlind Project
  • Leigh Crawshaw, Deaf Education Teacher/ Private Consultant
  • Tina Herzberg, Education Specialist, Education Service Center Region 12
  • Ann Johnson, Deaf Education Consultant for the Northeast Texas Cluster
  • Kate Moss, Teacher Trainer, Texas DeafBlind Project
  • Shelia Mosser, Teacher of the Visually Impaired, Killeen ISD

Other Contributors

  • Ann Adkins, Teacher Trainer, Texas School for the Blind and Visually Impaired, Visually Impaired Outreach
  • Gigi Brown, Early Childhood Specialist, Texas Deafblind Project
  • Janet Chlapek, Teacher of the Visually Impaired, Temple ISD
  • Ramona Egly, Deaf Education Teacher, Killeen ISD
  • hris Krasusky, Special Education Coordinator for AI/VI, Killeen ISD
  • Jenny Lace, Teacher Trainer, Texas Deafblind Project
  • Stacy Shafer, Early Childhood Specialist,
  • Texas School for the Blind and Visually Impaired, Visually Impaired Outreach
  • Heather Sullivan, Deaf Education Supervisor, Temple ISD
  • Amy Tange, COMS, Cypress-Fairbanks ISD
  • David Wiley, Transition Specialist, Texas Deafblind Project

 

Students who are Deaf or Hard of Hearing at Risk for Vision Loss

Students who are Blind or Visually Impaired at Risk for Hearing Loss

Hearing Quick Check

Vision Quick Check

This document is designed to help educational teams develop appropriate IEPs for students with DeafBlindness.  Indicators not present may indicate a training need for the team.  The presence of these indicators demonstrates a well-designed IEP in areas related specifically to the impact of DeafbBindness.  Other factors indicating a quality IEP in general are not covered here.

There seems to be some confusion around the topic of determining a student’s educational eligibility for DeafBlindness. It is a fascinating subject and one that we love to talk about here at the Texas DeafBlind Project. We have tried to assemble some common (and not so common) questions to help alleviate confusion and allow everyone a better night’s sleep.

Question 1: What is the eligibility definition for DeafBlindness* in the Commissioner’s/SBOE Rules Eligibility Criteria?

§89.1040. Eligibility Criteria.

 2)  DeafBlindness. A student with DeafBlindness is one who has been determined to meet the criteria for DeafBlindness as stated in 34 CFR, §300.8(c)(2). In meeting the criteria stated in 34 CFR, §300.8(c)(2), a student with DeafBlindness is one who, based on the evaluations specified in subsections (c)(3) and (c)(12) of this section:

(A) meets the eligibility criteria for auditory impairment specified in subsection (c)(3) of this section and visual impairment specified in subsection (c)(12) of this section;

(B)  meets the eligibility criteria for a student with a visual impairment and has a suspected hearing loss that cannot be demonstrated conclusively, but a speech/language therapist, a certified speech and language therapist, or a licensed speech language pathologist indicates there is no speech at an age when speech would normally be expected;

(C)  has documented hearing and visual losses that, if considered individually, may not meet the requirements for auditory impairment or visual impairment, but the combination of such losses adversely affects the student's educational performance; or

(D)  has a documented medical diagnosis progressive medical condition that will result in concomitant hearing and visual losses that, without special education intervention, will adversely affect the student's educational performance.

Question 2: What is the benefit for the IEP committee to assign a DeafBlind label to a student?

Answer(s):

  • A student with dual sensory impairment (i.e. DeafBlindness) can have very different educational needs than those with a single sensory impairment (AI or VI). It will be important for her team to think about questions of access from a combined sensory loss, or DeafBlind, perspective. Staff who are trained in a single sensory area may need additional support specific to DeafBlind educational assessment and programming strategies in order to develop an appropriate IEP.

Typical educational approaches for students with AI labels involve the use of vision as a compensatory strategy. For those students with a VI label, compensatory approaches involve the use of hearing.  Emphasizing the DeafBlind label can help to more clearly define the uniqueness of the disability.

  • There are specific resources and unique services for students with DeafBlindness and their families. Without the DeafBlind label, teams and families may not be made aware of information about the Texas DeafBlind Outreach Project, DeafBlind services through HHSC and the TWC, the National Center on DeafBlindness, the DBMD Waiver, Helen Keller National Center, or iCanConnect. – See PDF Download Resource Guide for Parents of Students with DeafBlindness or download it as a Word file.
  • Some families or students may identify as Deaf/hard of hearing and not as a person with DeafBlindness. For example, a person with Usher syndrome may identify strongly with the Deaf community and culture. They may lack important information about their visual impairment and its implications.  While it is very important to be sensitive to these issues, the DeafBlind label can help the education team identify resources and strategies around counseling, braille instruction, tactile sign, Orientation and Mobility, and other supports that may be beneficial to the student and family.
  • While either DB or AI/VI are acceptable, it is recommended that DeafBlind (DB) be selected and then ranked in the primary positionsee question 5.

Question 3: Does the DeafBlind label qualify a student for additional services that the AI/VI label does not?

  • Generally speaking, a student qualifies for the same services, regardless of whether they have an AI/VI label or a DB label. All students with both VI and AI eligibility will be counted on the DeafBlind Child Count and can access the support of the TX Deafblind Project.

Question 4:  Why is the student with mild dual sensory impairments considered DeafBlind?

*A student with DeafBlindness is one who:

(C) “has documented hearing and visual losses that, if considered individually, may not meet the requirements for auditory impairment or visual impairment, but the combination of such losses adversely affects the student's educational performance;"

Answers(s)

  • We affectionately call this “The third way”.  The question to consider is whether the combined effects of the mild vision and hearing losses impact educational performance.  Do these combined sensory deficits affect the student's ability to gather information and participate in the instructional environment? If so, to address this problem, the child may need accommodations, special technology, or unique strategies that require professionals with a background in dual sensory loss to participate in assessment and program development.
  • If a student qualifies as DeafBlind under the eligibility criteria section C, a Teacher of Students with Visual Impairments (TVI), as well as a Teacher of the Deaf and Hard of Hearing (TDHH), will participate in the student's ARD.  This means the professionals with training in these types of sensory losses will be involved in programming for this student. Among other things, they are needed to address optical and amplification devices, accommodations that assure appropriate access to information, and the development of IEP objectives, which address self-advocacy and effective use of sensory devices.  They will need to consider the combined impact of the mild sensory losses when designing programming.

Question 5: Why is it recommended that DB always be ranked as the primary disability?

Answer(s)

There are two separate counts that students with DeafBlindness should be reported on each year.

The first is the US Department of Education, IDEA count. The second is the DeafBlind Child Count that is collected by the Office of Special Education Programs (OSEP).

IDEA Count:

  • The US Department of Education (ED) is required by the Individuals with Disabilities Education Act (IDEA) to report to Congress annually on the number of children receiving special education, by disability category, for ages 3-21 years. The count must be unduplicated - that is, children can only be counted in one category, regardless of the number of disabilities they experience.

http://www.afb.org/Section.asp?SectionID=3&TopicID=138&DocumentID=3350

For this count, the primary ranking is the only one reported to the federal government for IDEA data collection. Therefore, unless the Deafblind label is stated as the primary disability it will not be recorded on this count. This information is used in policy development. Since DeafBlindness is the rarest of the low incidence groups, it is important to be sure they are not missed. Policy makers may not see the separate DeafBlind Child Count that OSEP collects from the state DeafBlind Projects. 

DeafBlind Child Count:

  • The Texas Education Agency (TEA), Division of Special Education, is required to report annually on individuals, 0-21 years of age, who are DeafBlind in Texas. This information, collected by state DeafBlind Projects, informs the National DeafBlind Child Count recorded by OSEP.
  • The DeafBlind Child Count collects different information than the IDEA count, and provides information that is used for regional and statewide planning to develop funding and appropriate services for infants, children, and youth who are DeafBlind.

Students with both the DeafbBind and the combined AI/VI eligibility labels are reported on the DeafBlind Child Count. Using either the AI/VI as primary/secondary (i.e. first and second) or DeafBlind as primary is best practice. There is no impact on funding or services either way.

Question 6:  What information on community and state service resources for DeafBlindness is provided for the parents and student?

Due to the low incidence of DeafBlindness, information is often not included in the typical resource packets distributed by school professionals regarding vision loss and deafness.

  • It should be noted that there are specific resources and unique services for students with DeafBlindness and their families. For instance, information about the Texas DeafBlind Outreach Project, DeafBlind services through HHSC and TWC, the National Center on DeafBlindness, the DBMD Waiver, Helen Keller National Center, or iCanConnect. The Texas DeafBlind Project has assembled a resource guide for parents and students with DeafBlindness – See Resource Guide for Parents of Students with DeafBlindness.

Question 7: If the Texas DeafBlind Child Count is due before the FIE process of assessing vision and hearing is complete, should the child be reported?

  • Yes!  Students for whom vision and hearing loss are suspected, but who have not been tested, may be reported on the DeafBlind Child Count and remain there for one year. During that year, evaluation of their sensory functioning should be completed. Technical assistance related to appropriate assessment techniques is available from the Texas DeafBlind Project at the Texas School for the Blind and Visually Impaired”.

Instructions for completing the DeafBlind Child Count

(Originally published in the July 1993 edition of P.S. NEWS!!!)

Summer 99 Table of Contents
Versión Español de este artículo (Spanish Version)

By Kate Moss (Hurst), Family Support Specialist and Robbie Blaha, Teacher Trainer, TSBVI, Texas Deafblind Outreach


Leisure time, the time free from work or duties, is important to all human beings. Leisure time is the time for doing something that will relax us or energize us so that we can renew ourselves to face the demands of our lives. It is something we require as much as food or sleep to stay healthy and sane.

We all have different ways of spending our leisure time. What might be a leisure activity for me, e.g. reading a mystery novel, might not be leisure for you. We know and accept this about each other. When considering "leisure skills" for children with deafblindness, however, we often focus on activities that do not relax or positively energize them. We spend their time getting them to participate in "play work" as one young man with deafblindness terms it. Learning to play games, participate in arts and sports activities, or other pursuits as a part of their educational programming may be beneficial for children in many ways, but these activities don't necessarily meet their needs for "leisure."

The type of activities that often do provide relaxation or amusement for these individuals includes behaviors that we find unacceptable: flicking your hand in front of your eyes, pulling threads out of your clothes, making repetitive sounds, etc. These behaviors are considered self-stimulation, and as such are often perceived negatively because they do not look "normal," may interfere with learning and can often become self-injurious. Yet these behaviors serve a positive purpose for these individuals as well.

Changing our perception of these self-stimulation behaviors may be the most reasonable course to take in addressing this issue. This is especially true if a change of perception also helps us find ways to give more information to the child who is deafblind and consequently reduce his need to find stimulation on his own. These behaviors may also hold the key to information about his/her personal preferences which we may tap into to select more appropriate choices for typical leisure options.

Stimulating Experiences

Most of our "leisure activities" are nothing more than self-stimulation behaviors that have become highly ritualized over time and made socially acceptable. There is nothing intrinsically valuable or reasonable about leisure pursuits such as bungee jumping, playing cards, dancing, playing video games, listening to music, smoking, etc.

People participate in different activities because they find them to be pleasurable and because the activities alter their physical state. Each of these activities provides us with a particular type of sensory input; see chart below. There is not necessarily a great difference in so-called self-stimulation behaviors and some of these activities beyond the fact that some are more socially acceptable and "normal" in appearance than others. For example, what is really so different about banging a table and banging a drum, rocking to music and rocking to silence, making repetitive sounds and imitating bird calls, spinning for no apparent reason and spinning in a ride at the amusement park?

Each day a good portion of our energies is spent in self-stimulation. Just look at the people around you. You are in a room with your family watching television or at a meeting with a group of co-workers. Although you are seemingly engaged in the same activity, your daughter or colleague is playing with her hair. Your son or your office-mate is shaking his leg and tapping out rhythms on the arm of the chair. Your husband is flipping channels with the remote or your boss is flipping papers. If you ask them what they were doing, they will likely reply that they are watching television or having an important meeting. They will be less likely to say they were channel surfing, twirling their hair, practicing the drum part for "Wipe Out," or fanning their papers.

Chart: Our brain seeks out stimulation through the channels of our senses. Each of us seeks out this stimulation in a variety of ways. Society accepts some of these behaviors without question, yet feels very differently about others. In some cases acceptance seems to be arbitrary. This chart shows examples of how individuals typically fulfill the craving for stimulation and how some self-stimulation behaviors of children with deafblindness parallel these behaviors.

 
Sensory ChannelMiss Manners Guide to Appropriate Self-StimulationCreative Variations Which May Plug You Into a Written Behavior Plan 
Tactile: information received by touch (throughout the body surface) includes sensitivity to light touch, pressure, pain, and temperature Twirling hair, drumming fingers, playing with condensation on a drinking glass, fingering fabrics, rubbing eyes, pulling on beard Pulling hair, lying in front of the air vent, slapping face/ear, playing with spit, rubbing your head
Proprioceptive: information about the relative positions of parts of the body; information comes through sensations arising in the muscles, joints, ligaments, and receptors associated with the bones Snuggling in quilts, cracking knuckles, jiggling/crossing legs, sitting on your leg Burrowing into furniture, wrapping arms inside tee-shirts, wrist flapping
Visual: information received through the eyes/seeing Gazing at your fingernails/hands/rings, watching television without the sound, window shopping, flipping through magazines, eye pressing Flicking hand in front of eyes, flipping pages of books, light- gazing, playing with transparent or shiny objects, eye poking
Auditory: information received through the ear/hearing Humming/whistling, tapping a pencil on a surface, playing background music Vocalizing or making sounds, banging on objects, tapping objects together next to ear
Olfactory: information received through the nose/smelling Wearing perfume, sniffing magic markers/scratch and sniff stickers, burning incense Rubbing feces on the body and smelling, smelling other peoples' hands or shoes
Gustatory: information received through the tongue & lips/tasting; closely tied to the sense of smell Chewing flavored toothpicks, sucking on mints/hard candy, smoking, chewing on hair, sucking on pens/jewelry Mouthing objects, chewing on hair, sucking on fingers, licking objects
Vestibular: information received through receptors in the inner ear that enables us to detect motion, especially acceleration and deceleration; closely tied to the visual system that provides information to the vestibule located in the inner ear Rocking in chairs or rocking body, riding on amusement park rides, dancing; twisting on bar stools, skating; sliding Rocking body, spinning body, twirling in swings, head rocking

Each of us, even those of us with more intact central nervous systems, also tolerate differing degrees of stimulation. Look at the difference in the preferred musical tastes (and intensity levels) between the teenager and the forty-year-old. Although most teenagers enjoy megawatt rock concerts with all the trimmings, most adults are more inclined to seek out softer music or silence in a dimly lit room. In the same way, children with deafblindness need varying amounts and intensities of stimulation.

Questions to ask about self-stimulation

If we come to accept that self-stimulation is an important and valid activity for individuals without disabilities, then we must begin to revise our thinking about addressing self-stimulatory behaviors in individuals with deafblindness.

Can this behavior be stopped?

In looking for the answer to this question, first take a look at yourself. Try this little exercise. Identify one of your own deeply cherished self-stimulatory behaviors such as cracking your knuckles, humming, sliding a charm on your necklace, etc. Try to keep track of how many times during the course of a 24-hour period your engage in this behavior. Then spend the next 24 hours refraining from this behavior. If you succeed, then try to extinguish that particular behavior for a year. Stop this behavior under all kinds of circumstances: times of stress, times of idleness, etc. Once you have completed this exercise, answer the question for yourself. Your answer will either be a resounding "no" or a "maybe, if" depending on your particular success in completing the exercise.

Children with deafblindness (just like you and me) participate in self-stimulatory behavior to self-regulate, calm, to energize, to get feedback, etc. Most of the time you can't completely extinguish the behavior, nor should you, because it does serve a purpose.

Can this behavior be redirected?

Most parents find that their child is more likely to participate in self-stimulatory behaviors when he/she is idle or stressed. Interacting with your child in some way may break up the self-stimulation. If the behavior appears in response to stress, finding ways to help him/her relax, e.g. massage, being wrapped up in a quilt, etc., may reduce the amount of time spent in this behavior that you find inappropriate or harmful. If your child is left alone, however, it is likely he/she will re-engage in this activity as soon as the opportunity presents itself.

Can this behavior be "contained" by allowing it in certain locations or at certain times?

Some behaviors may present problems because they are considered socially inappropriate. Those of us who are smokers have learned to refrain from our favorite self-stimulation behavior on flights, but we all know exactly where to go in the airport to have that last cigarette before the flight leaves.

With some effort many children can learn to remove themselves to their bedroom or a private place when engaging in self-stimulation that is not considered socially acceptable. Using calendar symbols to represent this favored activity and scheduling the activity as part of the child's day may help the child refrain from this particular self-stimulation behavior for increasingly longer periods of time and stay involved in other kinds of activities.

Can this behavior be modified or expanded into more "socially acceptable" self-stimulatory behaviors?

The value of a self-stimulatory behavior is what the behavior tells you about how your child takes in information. If your child likes to burrow down inside the cushions of the couch, be held or hugged a lot, or enjoys massage, you can assume that he is motivated by information he receives proprioceptively. If your child likes to vocalize, listen to music, or bang things together next to his ear, you can assume he is motivated by information he receives auditorially.

These behaviors can be used as a way to explore the individual's preferred sensory channels for receiving information from the world. With this information we may find preferred sensory experiences around which we can develop more "mainstream" leisure activities for children that they will also come to view as "leisure." For example, if a child enjoys the visual sensation of lights we can find age-appropriate toys that might be motivating to him. In addition to familiar toys such as Lite-Brite, consider lava lamps, continuous wave machines, lighted drafting tables for drawing, and even some Nintendo-type games. You might also consider extracurricular events such as visiting arcades, decorating with lights for appropriate holidays, and/or lying in a hammock under a tree watching the play of light through the leaves.

Take time to observe the types of self-stimulation that your child participates in and when this behavior occurs. Watch him/her and make notes about what you see and when you see it. Then try to see if there is any pattern to these behaviors that will give you insight to the type or types of stimulation he/she prefers and the purpose it serves. At the same time note what types of activities he/she finds aversive.

When you have a good understanding about his/her preferences, begin to brainstorm ways that you can offer other stimulatory activities or perhaps modify or expand on the preferred self-stimulation. Ask for help from your child's teacher, physical therapist, occupational therapist, and others. Look at children of the same age and try to find toys or activities that may make the self-stimulatory behavior appear more "normal."

Sometimes your child's favorite self-stimulation activity can be modified or expanded in a way that will make it more socially acceptable. For example, everyone knows the "nail-biters," but do you recognize them when they become "the manicurists." Several of my friends substitute the more acceptable behavior of nail care for their favorite activity of nail biting. They carry a complete manicure set with them at all times and can often be seen in meetings quietly filing or clipping a nail. They buff, cream, and polish. They examine their nails for chipping, snags, splits. They are rewarded by others who admire their efforts instead of being held in low esteem as one of those nervous nail-biter types.

You should realize, however, that generally your child will need support from you to seek out these more acceptable behaviors. Their first preference will generally be for the behavior they have developed on their own.

Can the environment be engineered to make this behavior safer if the behavior is detrimental to the child or those around him/her?

People who like to jump off things are great examples of engineering the environment to make a dangerous self-stimulation behavior safer. These folks, e.g. skate-boarders, skydivers, skiers, etc., have developed elaborate ways of placing themselves in extremely dangerous activities and surviving. We have industries based on protective clothing and equipment that will allow them to hurl themselves through space and make a safe landing.

Frequently, with children who put themselves in danger of bodily harm by participating in self-stimulation activities that are excessive to the point of creating physical danger to themselves or others, the best you can do is to provide protection. Splints, helmets and other devices sometimes must be used temporarily to protect the child and others around him/her.

Could there be physical or emotional factors provoking these behaviors?

In addition to providing protection from the effects of the behavior, it is important to look at the cause of the behavior. Often times these behaviors erupt in response to real physical problems that the child is not capable of communicating to you. Emergence of these behaviors or increase in these behaviors, might indicate pain or decrease of sensation as in the case of retina detachment or ear infections. Seeking out appropriate medical examinations when this type of behavior emerges or escalates is very important to the health and safety of the child.

Emotional and environmental conditions may also provoke increases in these self-injurious behaviors. One individual I knew exhibited a dramatic increase in self-stimulatory behavior after the death of her father. The amount and intensity of the behavior posed concerns for her safety and the safety of others. Since there was no physiological basis for her behavior, the family spent a lot of time with her looking at pictures of her dad, going to the cemetery with her, and trying to participate with her in activities that were associated with her father. After a period of time, the behaviors decreased to levels that were in line with the period before her father's death.

Changes in schedules, changes in routines, or moves to new environments can also bring about increases in self-stimulation behavior. Helping the child to anticipate these changes and providing as much consistency as possible through routines during times of change, are strategies that may help to reduce the amount of this type of behavior.

Conclusion

Like you and me, children with deafblindness have a need to participate in self-stimulatory activities. Because their behaviors appear very different from our own and can interfere with learning or become dangerous, they are viewed negatively by many people. Changing our perception about these behaviors may help us deal with them in a better way.

There are a number of ways to deal with self-stimulatory behaviors. Plan ways to keep the child more involved with others during the course of the day. Work to help him/her contain the behavior, or engineer the environment to make the behavior safer. Schedule time into the day to allow your child time for this preferred activity. Look at ways to adapt the behavior so that it will appear more "normal." Learn to use the information these behaviors offer about your child's preferred channels of sensory input to develop recreational and social pursuits that may be enjoyable for him/her even if these activities will not entirely meet his/her "leisure" needs. Finally, accept that you will probably never completely extinguish the behavior without having it replaced by another self-stimulatory behavior. Self-stimulation is common to all humans and serves an important purpose.

Resources and Additional Reading:

Levack, Nancy et al. Low Vision: A Resource Guide with Adaptations for Students with Visual Impairments, TSBVI, 1991.

Kotulak, Ronald. Unlocking the mysteries of the brain. Austin American Statesman, Sunday, June 6, 1993, p G1 and G4-6.

Restak, Richard, M.D. The Brain, Bantam Books, 1984.

Romanczyk, R. G., Kistner, J. A., and Plienis, A. Self-stimulatory and self-injurious behavior: etiology and treatment, pps. 189-254 in Autism and Severe Psychopathology, Advances in Child Behavioral Analysis and Therapy, Vol. 2.

Rojahn, J. and Sisson, L. A. Stereotyped behavior, pps. 181-223 in Handbook of Behavior Modification with the Mentally Retarded, 2nd Ed., 1990.

Stone, Gretchen. Self-stimulation and learning behavior, 1987.

Silverrain, Ann. An informal paper: teaching the profoundly handicapped child, 1991.

van Dijk, Jan. Movement and communication with rubella children, 1968.

Wiley, David. It's more than a game: acquiring skills for leisure time, VISIONS, TSBVI, Outreach Department, May 1993.