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with Diane Sheline, Independent Consultant, CTVI, CLVT.
www.strategytosee.com

Sara: I'm pleased to introduce the presenter of the intervention piece of this training. Diane Sheline has been a TVI since 1980 when she received her Master's degree from San Francisco State University in the field of Visual Impairment.  For the past eight years, however, Diane has followed her interest in the area of evaluation and assessment.  She found that she needed a tool to assess the growing number of referrals that were being received.  These students that were being referred had CVI or other brain-related vision loss. She began using Christine Roman-Lantzy's Assessment and with increasing confidence, she has assessed students for the past eight years using this tool. When speaking with TVIs around Texas, I began to hear from them who have been to Diane's training that it was very, very beneficial for them.  They really felt like they got some good solid hands on real-life sorts of ideas that they could use for intervention.  And that is why I hunted her down to get her to help with this training. And luckily for me, she graciously accepted.  So without further ado, here's Diane.

Diane: Hi, I'm Diane Sheline, and I'm happy to be here to share with you some techniques and strategies I have found helpful in encouraging students with brain damage-related vision loss or cortical visual-impairment to use vision more consistently and efficiently.  Before I get in to techniques and strategies, I'd like to discuss two important points. 

One of the most important breakthroughs of modern neuroscience is the discovery of neuroplasticity which is the brain's ability to change and adapt.  A damaged brain can often reorganize itself so that when one part fails, another can often substitute.  Since plasticity seems to be highest when children are young, it's particularly important to figure out what will encourage children to use looking behavior and use their vision efficiently.  Because then, we encourage a positive influence on how the visual system develops and functions.  Exactly what interventions we will use will change overtime as more discoveries are made about how the brain functions and how we can intervene to improve change. 

In a recent PBS program on the topic, they noted seven key factors and I'd like to mention them to you now.  Change can occur only when the brain is in the mood, alert, on the ball, ready for action.  Change strengthens connections between neurons engaged at the same time.  The brain builds on its successes.  Neurons that fire together, wire together.  This helps the brain get better at its predictive capacity.  Associations can be made more easily.  Initial changes are just temporary while the brain can learn through impact which is a powerful experience. Usually, it learns through lots of repetition, doing the same thing again and again and again.  Brain plasticity is a two-way street.  It can change itself in positive or in a negative direction.  Memory is crucial for learning.  Where you put your attention is important.  Practicing something while distracted won't help the brain change.  And the last is motivation is a key factor. 

The second point I'd like to make is that educational strategies which encourage efficient use of vision that I will share with you today may not be the same ones we use in two years or in ten years from now but I've seen a positive change in my student's visual attending behavior by using them and I hope you will, too.  I've been using Dr. Christine Roman-Lantzy's materials for many years now, and I've found that when I evaluate a child with a brain damage-related vision loss or CVI and looks specifically at the CVI-related characteristics as well as determine the degree of each of these characteristics.  I am better able to tailor a program that encourages the child to use their vision efficiently. 

To discuss specific strategies and techniques, I will break them down into strategies most commonly used in Phase 1 students, with Phase 2 students and Phase 3 students.  Viewers should note that each and every student who has CVI has unique abilities, and these strategies that I'm going to present to you today are intended to only give you an idea of what might help encourage looking behavior.

I hope that they spark some great ideas for you.

By Cyral Miller, Outreach Director, TSBVI

Abstract: This article provides families with some guidelines to help assess if the IEP is meeting the vision-related needs of a child with a visual impairment.

Key Words: family, visual impairment, IEP, services, quality, guidelines, QPVI


Have you ever wondered whether there is a measurement system for how your child's program is meeting VI specific educational needs? How would you know whether these aspects of programming are truly "quality"? Among all the buzz about educational standards and accountability, how can you tell whether your child's unique needs related to the visual impairment are being met?

While every child is different, the reason that your child is eligible for special education in the category "visual impairment" is that his or her visual functioning requires specialized services. Parents are - by law - members in the team which must meet at least annually to determine whether your child is eligible for special education, review evaluation in all areas related to your child's disability and design an individualized educational program (IEP). For students with visual impairments, there are additional areas of essential educational programming for the committee to consider, known as the Expanded Core Curriculum (see #4 below).

Following are some guidelines for ways to analyze VI specific parts of your child's IEP.

1. The IEP should reflect the impact of the visual impairment.

 

 

___ Is there a functional vision evaluation (FVE) that clearly and accurately describes her visual functioning?

___ Are there recommendations for modifications related to the visual impairment to be implemented in the classroom?

___ Are there plans for material preparation if your child needs adapted materials?

For students who are deafblind, there are additional considerations due to the additional sensory loss. The Texas Deafblind Project has developed a DB IEP Quality Indicators checklist for your use. This document, accessible at http://www.tsbvi.edu/attachments/other/IEP_Indicators.doc is a very useful organizing tool to help you evaluate your child's program.

2. The IEP should reflect the role of a certified teacher of students with visual impairments (TVI).

 

 

_____ What type of service is being provided by a TVI?

TVIs provide effective services both directly to students and indirectly by consulting with the other team members, ensuring that adapted materials are available, and meeting with families and related agency personnel. If you have questions about the terms direct versus consult services, a good article to review might be "Related Services: Direct versus Consult" (http://www.tsbvi.edu/seehear/spring98/related.html). The role of the VI teacher will change as your child gets older, learns new skills or is served in different settings. An important goal is to teach self-advocacy skills so your child can independently get many vision-related needs (such as adapted materials, preferential seating, or readers) met. Talk with your TVI to find out what specific instruction and services your child needs from this specialized teacher. One aspect of a quality VI program is definitely good communication between parents and the TVI (and other team members).

_____ How much time is being provided by a TVI?

This should be directly related to your child's assessment and IEP. Many parents think that the more time a TVI spends directly with their child, the better, yet not all children need direct instruction from a TVI and typically not in all subjects. Some skills are typically best taught by a certified teacher of students with visual impairments, such as use of specialized equipment, low vision device training and other visual efficiency skills, use of the abacus or slate and stylus, braille reading skills and some daily living skills. These can then be reinforced and practiced with others.

3. The IEP should reflect the role of a certified orientation and mobility specialist (COMS).

 

 

_____ Is there an O&M evaluation and/or IEP goals?

Children must move and interact with their world to learn. Safe and efficient movement is critical to lifelong learning. If your child's visual condition effects her orientation and movement in her home, school or community, a COMS should be involved in her education. Look for an evaluation of your child's O&M skills and a determination on whether O&M services are needed. The need for O&M instruction varies for each child each year. If your child is entering a new setting or a new developmental level, starting a community job or changing classes, she may have a greater need for O&M than in the past. Orientation and mobility is one of the expanded core curriculum areas (see the next section) considered critical for the education of children with visual impairments.

4. The IEP should reflect the Expanded Core Curriculum.

 

 

_____ Does your child's IEP include goals related to areas beyond academics? The expanded core curriculum is the heart of specialized VI programming.

A major consideration should be to ensure that your child is being assessed and instructed as appropriate in what is called the Expanded Core Curriculum. These areas of instruction were highlighted as part of the National Agenda for the Education of Children and Youths with Visual Impairments, Including Those with Multiple Disabilities based upon how the presence of a visual impairment can affect a child's ability to learn necessary life skills. More information is available on each of these areas at the TSBVI website http://www.tsbvi.edu/what-is-the-expanded-core-curriculum-ecc. A visual impairment puts children at risk for missing critical competencies that sighted children learn by observation.

So, check your child's IEP and see if these areas are being addressed:

  1. Assistive Technology - skills and the necessary equipment to hook into the information technology explosion and succeed in school, recreational and career areas

  2. Compensatory or Functional Academic Skills, Including Communication Modes - includes concept development, vi specific study and organizational skills, braille, calendar systems, tactile graphics and adaptations necessary for accessing all areas of the existing core curriculum, such as literacy instruction (see below)

  3. Career Education - learning about the world of work and skills for meaningful and appropriate personal career goals

  4. Recreation and Leisure Skills - organized exposure and skill development that match interests and abilities with options for fun

  5. Orientation and Mobility - skills for accurate body image, spatial awareness and safe and efficient movement

  6. Social Interaction Skills - interaction and relationship skills that are difficult to acquire without systematic instruction

  7. Self-Determination Skills - choice-making, decision-making, problem solving, personal advocacy, assertiveness, and goal setting

  8. Sensory Efficiency Skills - systematic instruction to maximize use of functional vision, low vision devices or low vision technology

  9. Independent Living Skills - daily living skills to promote independence in personal life

As a parent, you will want to ask the teacher of visual impairments (TVI) and certified O&M specialist (COMS) to review assessment in each area with you as a basis for developing priorities for your child. Not every child will need instruction in every area, but the only way to find the gaps is through systematic assessment. Informal checklists and assessment tools as well as academic records and progress notes should be collected from many members of the team and shared. This allows the team to compile a comprehensive review of your child's current functioning. Remember that you are part of the team, and your information about how well your child uses skills in daily living, recreation and leisure, and social skills in the home setting is crucial. Your knowledge of your child's level of functioning in these areas and others is necessary for the school to have an accurate overview.Although your child is eligible for schooling from birth through age 22, most skills are best learned in small stages throughout educational years. Go over the Expanded Core Curriculum with your VI staff and ask when specific skills in each area will be addressed.

5. The IEP should reflect VI specific input into literacy instruction.

 

_____ Is there a Learning Media Assessment (LMA) that clearly defines how your child will access written materials (as well as other materials)?

Literacy is an area of compensatory skill programming. An LMA will be important for decisions on whether your child will read tactually, with braille or tactile symbols, regular print and pictures with low vision devices, or enlarged print. Although developing literacy skills is emphasized in regular education programs, researchers are continuing to investigate how best to support instruction for visually impaired students. Cay Holbrook and Alan Koenig's research (Holbrook and Koenig, "Ensuring High-Quality Instruction for Students in Braille Literacy Programs," JVIB, Nov. 2000) found widespread professional agreement that daily direct instruction from a certified VI teacher for one to two hours each day is essential for a child engaged in beginning braille literacy. These researchers and others have also studied literacy instruction for students with low vision. The amount and type of instruction for your child will vary based on your child's visual needs and her age, learning styles, presence of other disabilities, and instructional setting.

_____ Is your child making progress in reading?

You need accurate information about your child's reading levels. Some students struggle with reading for reasons that are not related to their visual status, and more time from a TVI may not solve the problem. For others, the visual impairment causes significant access issues and a TVI is the best professional to support your child's literacy instruction. These differences are not always easy to diagnose. Usually reading problems are best addressed by a team that includes the reading instructor or specialist working with the VI teacher to diagnose the source of the challenge and design a successful program.

6. The IEP should reflect a long-term view of education.

 

_____ Is there a transition focus to your annual IEP development?

According to the Individuals with Disabilities Act, the goal of special education is to prepare students for employment and independent living. There are so many areas to think about in writing IEPs that it can become overwhelming. Remember that each year builds upon the last, and that there is a team to help you. You might want to seek out older students and adults who have visual impairment to develop a model for your child's future. Most people haven't come into contact with many blind or visually impaired adults and question what is possible. It is helpful to cultivate dreams for your child's adult (or at least young adult) life and then try to design each school year to lead most effectively towards making those dreams come true. This will help you to decide if the IEP goals are important, reflect your child's abilities and strengths and preferences, and will help her grow up to find a fulfilling life.

_____ What if my child doesn't have an IEP with vision specific goals?

 

 

If your child has a visual impairment that qualifies her for special education, the team must ensure that evaluation of current functioning in all areas related to the disability have been reviewed in developing an annual IEP. If your child does not appear to have any IEP goals or recommended modifications for instruction that reflect the presence of a visual impairment, or any role for a TVI related to the visual impairment, ask to see the informal assessment in all areas of the expanded core curriculum. Decisions on the type and amount of VI service delivery should be based upon how your child is doing in all areas related to the disability.So, how do you know if your child's VI specific program is high quality? Ask questions, look for progress, check that all areas of the expanded core curriculum have been assessed and addressed and that appropriate VI professional support is available. A quality VI program addresses the impact of vision loss on learning, and provides compensatory and specialized skills training so that your child can become a productive and happy adult.Note: These guidelines were created in part using information from A Guide to Quality Programs for Students with Visual Impairments. The QPVI process has been used by many districts in Texas and across the country to establish overall quality indicators for district programs. You might ask if your district has participated in that program. An individual student is more likely to receive a quality VI program if the overall district program is well supported. More information is available on the TSBVI website at http://www.tsbvi.edu/outreach-programs-items/3569-qpvi

(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 Eva LaVigne, Education Specialist and Kate Moss (Hurst), Statewide Staff Development Coordinator, TSBVI

Abstract: The first in a series of four articles discussing the importance of teaming to teach independent living skills to students with visual impairment.

Key Words: Programming, visually impaired, blind, deafblind, independent living skills, teaming, Expanded Core Curriculum

Editor's Note: This is the first article in a series about the importance of teaching independent living skills, including specific strategies for parents and teachers. We are very interested in hearing from our readers about their experiences (both successes and challenges) in teaching these skills to students with visual impairments and deafblindness. Please send your documentation forms; ideas for teaming and identifying/teaching skills; and successes working on daily living skills to Kate at .


Unless you are an unusually rich and spoiled prince or princess, there are some things you need to learn to do for yourself, or at least be able to manage for yourself, if you want to be a part of mainstream life. If you are visually impaired, learning to do some of these basic things requires systematic instruction. The "National Agenda for the Education of Children and Youths with Visual Impairments, Including Those with Multiple Disabilities" lists nine areas as part of an expanded core curriculum that is needed for any student with visual impairments. These areas are: compensatory or functional academic skills (reading, writing, math, etc.); orientation and mobility; social interaction skills; recreation and leisure skills; career education; technology; self-determination; visual efficiency skills; and independent living skills. It defines independent living skills as "all the tasks and functions persons perform, in accordance with their abilities, in order to lead lives as independently as possible. These curricular needs are varied, as they include skills in personal hygiene, food preparation, money management, time monitoring, organization, etc." (Hatlen, 1996)

Almost no one would dispute the necessity of learning independent living skills. The reality of teaching these skills in current school environments, where great emphasis is placed on academic subjects, is that too often many of these skills are "introduced as splinter skills, appearing in learning material, disappearing, and then reappearing." (Hatlen, 1996) Systematic instruction in independent living skills often seems an unachievable goal. The `when' and `where', not to mention the `how', of instruction is a real challenge for VI professionals, most carry big caseloads, who must provide instruction in less than ideal environments on typical school campuses. Still, these skills can and must be taught. To do it well, we think it requires a team.

Who's On the Team?

Ideally a team is made up of the student, the student's family, and the VI professionals (TVI, COM, Rehabilitation Teacher). Depending on the individual situation, special and regular educators may also play an important team role. The student and family are key players since they need to be able to identify priority skills areas, and commit energy to practicing skills daily in real-life settings. The VI professionals need to carve out time for individual instruction with the student, and/or coordinate with other educators and professionals to see that skills are taught using appropriate adaptive techniques. The regular and special educators need to make sure that learned skills are applied in all school settings, and give necessary feedback about the student's progress to the student, family, and VI professionals.

What Does the Team Do?

Determine priority areas

The first task for the team is to determine priority areas for instruction. What are the skills that are most important for the student to learn at any point in time? To a large degree, only the family and the student can say. Each family has its own dynamic. If you don't believe us, just tune in to an episode or two of Wife Swap. In one family it may be very important for the children to participate in a variety of chores and take care of many of their own basic needs such as making a snack, choosing their clothing, grooming and dressing themselves, and keeping their things organized. In other families, there may not be as much emphasis placed on younger family members doing these things. Unless the family supports the instruction that takes place at school, the student with visual impairments probably won't be highly motivated, or get enough practice or praise to achieve real levels of independence in a particular skill.

Evaluate

Once priority areas are identified, the VI professionals should see that there is a thorough evaluation of the student's current skills. That way the team can find an appropriate starting point, and guide the development of skills along a continuum. For example, you wouldn't start out having the child learn to button his shirt if he didn't have the necessary fine motor skills or he couldn't yet take off his shirt. There are a variety of assessment tools available. Some of these include assessments/checklists found in: Independent Living Skills: A Curriculum with Adaptations for Students with Visual Impairments (Loumiet and Levack, 1993); Basic Skills for Community Living: A Curriculum for Students with Visual Impairments and Multiple Disabilities (Levak et al, 1996); "Student Performance Indicators (SPI)" developed by Region 13 ESC ; Addressing Unique Educational Needs of Individuals with Disabilities: An Outcome Based Approach (Frey et al, 1991); or Functional Skills Screening Inventory (Becker et al, 1984).

Determine When Instruction and Practice Can Take Place

Some of the adaptive techniques a student may need to accomplish an independent living task have to be taught initially in a one-on-one pullout situation. Once the technique has been taught, the opportunity to practice skills usually can be embedded in activities throughout the day in a variety of school and community settings. For example, the TVI might teach the student strategies for identifying money and organizing it in a wallet during an individual lesson. The family, teachers, and paraprofessionals who interact with the student most are the ones who are most likely to support the student in practicing the skills in the cafeteria, on a field trip, at the grocery store, and at home. They are also the ones who will be most often in a position to insist that the student practice these skills in these settings. This helps the student more readily understand how that skill can make life easier and help him fit in with his peers.

Some skills, like cooking and cleaning, may be easier to teach in a home setting. If the TVI cannot regularly access a kitchen at school, perhaps a Vocational Rehabilitation Teacher from DARS Division for Blind Services (DBS) may be able to teach more advanced cooking skills in the home. However, the TVI may be able to collaborate with a home economics teacher to provide instruction during the school day. Every type of skill the student needs to learn can be taught, but some brainstorming will be needed to figure out when and where.

When it comes to practicing skills, everyone has a role to play. Family members should identify activities for practice in the home, and have the expectation that the student will be responsible for completing activities using these skills. Regular and special education teachers also need to systematically identify opportunities for skills practice within the context of the daily classroom routine. Some skills are easier than others to infuse, but with good team planning and collaboration almost any skill can be practiced multiple times every day.

If the family's priority is learning better skills for eating, evaluation might reveal that the student needs to focus on eating different food in an efficient and acceptable manner. The TVI might work with the student to teach some particular strategies, such as finding food on the plate, or using a fork to eat meat and vegetables while using a spoon for items such as pudding, ice cream, or soup. The TVI would also make sure the parents and other adults who are with the student during the rest of the day know what strategies the student needs to use. At home the parents may try introducing new foods, perhaps by having the child help to prepare the food item or by asking him to "try one bite." They might also ask the child to locate the food items on his plate before beginning to eat, and suggest which utensil to use on each one. The general education teacher might oversee the student during lunch to see how well the student can use these skills independently in the cafeteria or during snack time. If the teacher is planning a unit about a particular country, good nutrition, or plants and animals, opportunities to learn about and try new foods might be included in these units. Planning how each team member will support the goal is a very important part of the process.

Document and Share Progress

An effective team will also have a plan for documenting progress and sharing that information with other team members. The more each team player is aware of what the student can and cannot do, the better they will be able to support him/her. They can also encourage the student and help build his/her self-esteem as goals are accomplished. Some teams may want to start a journal to share progress notes. Other teams may use other types of documentation of skills such as a Skills Matrix (see example below).

Skills Matrix
SkillLunchScienceMathP.E.Home
Measure dry ingredients using a cup, half-cup, Tablespoon, teaspoon + measured sugar with tsp. + w/ Tbs. & tsp. - had trouble with 1/2 c. line   + used c. and 1/2 c. in recipe
From memory, select appropriate coins for familiar vending machine + id. quarters to purchase chips from vending machine + found quarters in change to buy coke on field trip   + 2 quarters and dime for chips - confuses nickel & quarter at coke machine
Use a brush, comb, or pick to style own hair.       - needed assistance with pocket comb + brushed hair on his own this AM

It is also powerful if the school and family can videotape examples of the student working on independent living skills. This serves to provide feedback to the whole team, and highlights successes and problems the student may be having in generalizing the skills that he/she has learned.

Teaching independent living skills may be challenging in many of our school environments, but it is also critical for our students with visual impairments. Better instruction and practice can take place if there is a team approach to planning, evaluation and, instruction.

Resources and Readings

Becker, H., Schur, S., Paoletti-Schelp, M., & Hammer, E., (1984). Functional Skills Screening Inventory, Austin, TX: Functional Resources Enterprises, Inc.

Frey, W., Lynch, L., Jakwerth, P., & Purcell, R. (1991). Addressing Unique Educational Needs of Individuals with Disabilities: An Outcome Based Approach. Lansing, MI: Disability Research Systems.

Hatlen, P. (1996). The Core Curriculum for Blind and Visually Impaired Students, Including those with Additional Disabilities. TSBVI Website, .

Levack N., Hauser, S., Newton, L., & Stephenson, P. (Eds.). (1996).  Basic Skills for Community Living: A Curriculum for Students with Visual Impairments and Multiple Disabilities Austin, TX: TSBVI.

Loumiet, R., & Levack, N. (1993).  Independent Living Skills: A Curriculum with Adaptations for Students with Visual Impairments. Austin, TX: TSBVI.

Region 13 Education Service Center. "Student Performance Indicators (SPI)":


By Stacy Shafer and Kate Moss (Hurst), Educational Specialists, TSBVI Outreach

Abstract: If children learn through, then we must become better playmates in order to facilitate better learning for the child.

Key Words: programming, blind, deafblind, assessment, appetite/aversion, Active Learning, van Dijk, communication, instruction, routines, model, turn-taking


All human beings are motivated to learn when they find the learning activity interesting, useful or fun. Learning takes place best for us when we are in a calm and alert state. This means that we need to be physically comfortable, feel emotionally or physically safe, and have the physical vigor to be able to interact with people or objects in the environment. Children with visual impairments, deafblindness and other physical and cognitive disabilities are no different from other learners in these requirements. Unfortunately, many of these children may not have the language or physical ability to easily tell us their needs and preferences so we can make learning fun and motivating for them. Often times we feel at a loss for how to begin.

There are some strategies that we know work for these children. One strategy, often discussed by Dr. Jan van Dijk and Dr. Lilli Nielsen, is to follow the child's lead. Another is to build predictable interactions with people and environments through the use of routines or highly structured activities. Barbara Miles reminds us that, children who are deafblind (and to some degree, children who are visually and multiply disabled) use their hands as tools, eyes, ears, voice and also to relieve stress. We also know we need to recognize and respond to any attempt a child makes to communicate if we want to foster the child's communication skills development. Underlying all of these strategies is the notion of making the experience inviting and fun for the child. In short we have to become good playmates for the child.

First Assess

So how can we do this? First we have to get a clear picture of where the child is by thoroughly assessing the child's skills in the areas of vision, hearing, communication, fine and gross motor, emotional development, and cognitive development. We also want to get an idea of the level of play and interaction skills the child uses with people and objects. A list of some resources educators might use to do this assessment is included at the end of this article.

We also need to take a thorough inventory of what the child likes and dislikes, what is often referred to as an Appetite/Aversion assessment. This includes types of sensory input, objects, people, activities or actions, and environments that are preferred or not well tolerated.

Gain the Child's Trust

Once you know where the child is and what is interesting to the child you begin by gaining the child's trust. This means sometimes, simply sitting in the same room as the child and not making any demands upon him. You also show an interest in what the child finds motivating whether that is moving his body a particular way or interacting with particular types of objects. As the child becomes more comfortable with you, you can increase the level and amount of contact with the child until he readily accepts your close proximity and begins to seek you out.

Display the Characteristics of a Good Playmate

When the child trusts you, you are ready to become more of an active playmate. Think about the type of playmates you experienced as a child. Remember when you were required to play with a child at some event you attended with your parents? Did you ever get stuck with the child who was bossy, always controlled the objects or activity, didn't play any of the games you knew and liked or only played games that you were bad at, and who hoarded all the good toys? Did you enjoy that interaction? No! You probably tried to get away from that child as soon as possible. Most of us were happier if we had an opportunity to find a generous playmate, someone willing to share all his toys with us. We wanted someone who was interested in the things that interested us. A good playmate was someone who took turns, and offered new ideas and experiences without demanding that we go along with his suggestion.

As an educator (or parent) working with a child who is deafblind or visually impaired with additional disabilities you must become the good playmate to the child. So how do you do this?

Slow your pace

First of all, consider the pace of your interactions with the child. How fast can this child take in information? How long does it take for the child to physically be able to respond to sensory input? Is the child unsure of what you might do with him and a little fearful of the speed at which you move? A much slower pace than you would typically utilize may be needed. Unless we discipline ourselves to be aware of how fast we are moving around the child, we are likely to frighten him or simply overwhelm him. Step one, slow down.

Be generous

Be generous with the toys you have. Offer the whole toy box and see what the child picks. In order to learn about objects and their properties children have to have a wide variety of objects so they can compare the objects to each other. Typical two-year-olds don't play with one object. They play with many objects in a sequence, often returning to familiar objects to compare with a new object.

Be generous with yourself in your interactions with the child. If the child is interested in continuing the interaction, give him extra turns. Make your hands available for the child to use to as he chooses allowing him to guide you in the interaction. Wait and give him time to consider how he wants you to respond. Let him know you understand or value what he is trying to tell you by mirroring back what he shows you. This type of generosity is the beginning of many good conversational interactions.

Don't be bossy or controlling

Don't be bossy. Let the child control the activity. Be quiet and don't make demands of the child. For example when you are sharing a ball don't say, "Throw me the ball. Let's put it in the basket." Instead make a variety of balls available to the child and imitate what he does with the ball.

Don't try to control the action or the object. Offer to be a part of the exploration, but respect the child if he refuses your involvement. Don't correct him or tell him he is handling the object incorrectly or not completing the correct action. He will be much more inclined to include you in his game if you aren't trying to take over.

Don't make him share until he is ready

Having duplicates or a sufficient quantity of toys is also an important. This allows you to model things to do with an object without making the child share his toy with you. Remember, at first the child with not be open to sharing his toys with you. He may show you his toy and you can comment on how lovely it is, but don't make the mistake of taking it from him until he insists you have it. It takes longer for some of us to learn to share, so don't rush it.

Be an interesting model

As the child experiences success in the way he is acting on the object you can offer an idea of something new to do by modeling an action. Try to determine what is interesting to the child about that object based on how he is playing with it. Is he fascinated with the shape of the object? Show him how the object's shape will fit with another shape, for example putting the ball into a tube or a container. Is he interested in the texture of the object? Show him a different object with the same texture or offer a very different texture in a similar object for him to compare. Is the child interested in the way the object bounces or sounds when you throw it? Show him how many different objects bounce or sound. Remember, if the child decides he is not interested in what you are showing him you should return to his game. A little later you can try modeling the new action again.

Let the child feel success as well as challenges

Make sure that what you model is only slightly higher developmentally than the the child is currently demonstrating. For example, if the child is taking things out of a container you might show him how to put things in a container. It is important to have a clear notion of the "next step" when you sit down to play with a child so that you don't target skills that are too high.

Educators have a natural tendency to constantly be working on the child's IEP goals, which typically are written just above where the child is able to function. However, to be a good playmate, you need to strike a balance between letting the child feel success by practicing learned skills and challenging him to develop new slightly higher level skills. Let the child be competent in play.

Go from imitation to turn-taking to participating in routines

As the child becomes more inclined to engage with you, slowly work from imitating him to having him imitate you, to setting up turn-taking interactions. Taking a turn is a first step in participating with someone in an activity. Learning a series of steps is what we do when we teach a child a routine. Being able to carry out a routine means that the child has a memory of a series of events that can be expanded on by adding new information.

By being a good playmate we can entice the child to join in with us as we explore the world around us. As good playmates we can share information about actions and interactions that are possible. When we are good playmates, we are also being good educators. When we are good playmate we generally enjoy teaching more.

Resources:

Assessment Tools:

Hagood, Linda. Infused Skills Assessment, Communication A Guide for Teaching Students with Visual and Multiple Impairments, 1997.

Harris, John, Hartshorne, N., Jess, T., Mar, H., Rowland, C., Sall, N., Schmoll, S., Schweigert, P., Unruh, L., Vernon, N., and Wolf, T. Home Talk a Family Assessment of Children who are Deafblind, 2003.

Morgan, E. et al. The INSITE Developmental Checklist, 1989.

Korsten, J.E., Dunn, D.K., Foss, T.V., and Francke, M.K., Every Move Counts, 1993.

Nielsen, Lilli. Functional Scheme, SIKON, 2000.

Rowland, Charity. Communication Matrix, 1997, 2004.

Rowland, Charity and Schweigart, Philip. Home Inventory of Problem Solving Skills, 2002.

Rowland, Charity and Schweigart, Philip. School Inventory of Problem Solving Skills, 2002.

Smith, M. and Shafer, S. Assessment of Biobehavioral States and Analysis of Related Influences, 1995.

Stillman, R. et al. The Callier-Azusa Scale, 1978.

Articles:

Most of these articles are also available in Spanish on the TSBVI website www.tsbvi.edu.

van Dijk Methodology:

Conversations without Language: Building Quality Interactions with Children Who are Deaf-Blind

Looking at Self-Stimulation in the Pursuit of Leisure or I'm Okay, You Have a Mannerism, 1993.

The van Dijk Approach to Child-Guided Assessment, 2002.

Active Learning Theory:

An Introduction to Dr. Lilli Nielsen's Active Learning

Active Learning and the Exploration of Real Objects, 2004.

Five Phases of Educational Treatment Used in Active Learning Based on Excerpts from Are You Blind? , 2004.

Tactual Development:

 

From ERIC: Tactual Development and Its Implications for the Education of Blind Children. (http://www.eric.ed.gov/)

Hand-Over-Hand Guidance: What Lesson Do We Teach?

Routines:

Make It Routine

New Teacher Series: Getting Started with Activity Routines

Routines

Why Are Routines Worth the Trouble?

Communication and Concept Development:

Non-Verbal Communication: Cues, Signals, and Symbols

What a Concept!

Information from Students with Profound Impairments: Gathering Information and Planning Instruction: 

Books About Active Learning:

http://www.ssc.education.ed.ac.uk/resources/vi&multi/lilli/lillihome.html

Nielsen, Lilli. The Comprehending Hand, SIKON, 1994.

Nielsen, Lilli. Are You Blind?, SIKON, 1990.

Nielsen, Lilli. Early Learning Step by Step, SIKON, 1993.

Nielsen, Lilli. Space and Self, SIKON, 1992.

Joseph's Coat: People Teaming in Transdisciplinary Ways

Originally published in Spring 1998 SEE/HEAR newsletter, from TSBVI Outreach Programs
Versión Español de este artículo (Spanish Version)

by Millie Smith, Educational Specialist, TSBVI VI Outreach

In the last five years I have been working with staff and families to support their efforts to team more effectively using the transdisciplinary model. I have not seen or created any perfect transdisciplinary teams during that time. I have seen staff and parents use bits and pieces of the model very effectively to improve programs for students. I am more convinced than ever that transdisciplinary teaming is the best of the service delivery models available to us at the present time. I am equally convinced that the best chance we have of increasing its use is to assure staff and parents that partial implementation is not only realistic, but probably as effective as a more idealistic whole cloth application. The product may be a patchwork conglomeration of pieces supplied by different people at different times, but a coat nevertheless.

The most powerful aspect of the transdisciplinary model, in my opinion, is its emphasis on plugging the expertise of specialists into the day-to-day instruction of students with severe multiple impairments. In this model specialists work in classrooms. They may provide direct instruction or therapy to the student during a regular activity or they may model, coach, and monitor interventions implemented by others. Often they do a combination of both.

Another powerful aspect of the model is that, whenever possible, specialists, instructors, and family members collaborate by meeting together to design instructional activities. More often, they collaborate by leaving each other notes, sharing video tapes, and calling each other on the phone. By collaborating, an effort is made to provide as much consistency in programming as possible across settings and people.

The best approach for implementing transdisciplinary teaming strategies may be to treat the total model like a menu of options. Teams can choose to concentrate their efforts on assessment, IEP development, or instruction. They can do some transdisciplinary work in each category without doing everything that category offers. In order to make informed decisions about where to concentrate efforts, a global understanding of the model is helpful.

Why is transdisciplinary teaming important?

Students with severe impairments receive instruction and services from a variety of different people. Instructors include teachers, teaching assistants, and family members. Special services may include speech, occupational therapy, physical therapy, vision, hearing, and others. Teaming allows specialists, teachers, and families to work together to teach skills in natural contexts where there is more opportunity for frequent practice.

Many specialists have changed the way they serve students with severe impairments in the last ten years. The professional organizations to which most specialists belong have endorsed a service delivery model that emphasizes integration of special services. Integration of special services benefits students with severe impairments in two ways: skills are worked on in natural contexts so that students don't have to try to generalize skills learned in a special setting, and skills are worked on every time the opportunity occurs, whether the specialist is present or not, so that practice is frequent.

In an integrated service delivery model, specialists assess needs, do diagnostic teaching to try out techniques and strategies, model techniques and strategies for other staff and family members, and monitor effectiveness and progress. When the integrated model is transdisciplinary, information is shared among specialists, instructors, and family members. This type of service is intense and dynamic, and highly effective.

How can specialists provide natural contexts and frequent practice?

The traditional service delivery choice for specialists has been direct or consult. For students with severe impairments a wider range of choices is necessary.

 AdvantagesDisadvantages
Direct Pull-out Always one-to-one. Special equipment. Infrequent practice. Context not natural.
Integrated Direct One-to-one or small group. Natural context. Infrequent practice.
Traditional Consult General information shared. Contact very limited
Collaborative Consult Specific information shared with team. Accountability  tied to progress in instructional activities. Requires more time.

Each of these models has a place in transdisciplinary teaming. For instance, direct pull-out may be appropriate for post trauma students or for a student learning a new communication device. Usually, this service is provided for as short a time as possible and a very structured transition period follows pull-out in order to transfer skills to natural contexts. That transition period might be integrated direct service. Integrated direct service is often used by speech/language pathologists teaching communication skills in natural contexts and by OT's and PT's teaching motor skills in natural contexts. Consult is usually provided in conjunction with direct service. Sometimes consult is the only service provided.

What type of consultation tends to be most effective?

Most consultation is general. Specialists write recommendations in their assessment reports. When specialists consult with teachers, they talk to them about their recommendations. Information is shared at a general level. For example: "This student has CVI. Most CVI students like the color red. If you want the student to look at something, try using red. Moving the object slightly in the peripheral field might also help."

Many teachers will remember the student might like red and they will probably make an attempt to select red materials when they can. When the VI teacher checks back with the teacher after this kind of consult, she may hear something like, "Well, I don't notice that red really makes that much difference."

Specific consultation tends to be more effective. In this type of consultation the specialist assesses, recommends, demonstrates in a natural context, and evaluates results. For example: "This student has CVI. CVI students tend to like red. Let's use a red scoop dish at mealtime instead of the cream colored cafeteria tray. If he can see the bowl, it may be easier to get him to scoop. We may need to position the bowl slightly to the left and move it a little at first. When he looks at the bowl, we'll give him a touch prompt to move his hand to the bowl. I'd like to come in at lunch time and try this a few times. Let's keep data on this for two weeks and see if there are more independent attempts to scoop. We may need to do something with the spoon as well."

Traditional consult by itself puts a very heavy burden on classroom teachers and family members to come up with activities and specific modifications for students with extremely intense needs. Transdisciplinary teams use a more dynamic kind of consultation. When consultation is specific and collaborative, it is a highly effective type of service. It also requires more time than traditional consultation. Students with severe multiple impairments tend to be chronically underserved. The average amount of service in Texas for traditional consult appears to me to be about thirty minutes a month. In many places it is less. A more reasonable average for collaborative consultation would be between two and four hours a month. Time demands are more intense when a team is starting a new program. Once the program is established, less time is needed for monitoring and maintenance.

What are the components of transdisciplinary teaming?

Collaborative Assessment

Collaborative assessment occurs when team members identify strengths and needs through shared observations and discussion. One type of collaborative assessment is an arena assessment. Team members meet together to observe a child as one team member (frequently the parent) interacts with the child. Collaborative assessment can also occur during team meetings designed to share and interpret information gathered by individual team members in one-on-one assessments with the child.

Integrated IEP

A team IEP is a document containing goals and objectives developed collaboratively by all team members. Based on family priorities, the group establishes an integrated set of goals (four to six) and two to three objectives per goal (eight to twelve objectives total for the IEP). If an objective relates to a particular related service, that related service provider is identified as responsible for insuring that instruction addressing the objective is implemented and that documentation is collected.

Natural and Frequent Instruction

IEP goals and objectives are taught in activities which occur naturally and frequently at home, in school, and in the community. A team member, usually a classroom teacher, parent, or teaching assistant, is identified as the direct implementor of instruction for a specified activity which may have several IEP objectives imbedded in it. The related service team member responsible for developing a given IEP objective either integrates direct service or consults with the direct implementor of instruction.

Role Release

Team members share knowledge and skills in their particular areas of expertise by role releasing. This is a systematic process whereby one team member trains another to use specific procedures and techniques. The team member who has received this training may then implement a procedure or technique in a given activity when the trainer is not present. The person with specific knowledge is responsible for ensuring that these procedures and techniques are used effectively and appropriately with a given child.  

Documentation

Information is gathered for the purpose of evaluating and refining instruction, reporting student progress on objectives, and sharing information with families and team members.

What assessments are important and how does the team use them?

Students with severe impairments are sensory-motor learners. Assessments of sensory and motor skills are extremely important. Cognition and communication are also important areas. Information about skills in each of these areas may be obtained by specialists in their individual assessments done as part of the Comprehensive Individualized Assessment. Assessment of biobehavioral states of arousal may be very helpful for students with the most profound impairments.

In transdisciplinary teams, specialists collaborate to plan their assessments, to carry out their assessments, and to interpret their assessments. Sometimes arena assessments are done. In this type assessment, one person interacts with the student while other team members observe and ask questions guided by the use of protocols specific to their disciplines. The advantage to this assessment approach is that the student interacts with the persons most familiar with him or her. Performance is likely to be more typical under these conditions. The disadvantage to this approach is that, although total assessment time tends to be less overall, assembling all team members in the same place at the same time can be difficult.

After teams assess, they must share information and come up with program priorities. Instruction is sometimes ineffective for students with severe impairments because too many needs are addressed. Instruction is much more effective if instruction is very focused on four or five priorities. These priorities become goals. Specific needs in each goal area are then identified. These become objectives.

What should a good transdisciplinary IEP contain?

Goal

The team uses assessments to select four to six priorities for the school year. Each of these becomes an annual goal. Some teams write very broad goals; some write more specific goals. Each annual goal should be a statement of what the team believes the child can accomplish within a school year. A broad goal would be: "Student will improve his expressive and receptive communication skills." A more specific annual goal would be: "Student will use ten expressive signs in appropriate contexts." Specific goals work best for students with severe impairments.

Objectives

Objectives are the steps between the child's current level of performance and the annual goal. They state one specific task the child will do, at what level, by when, and what criteria will be used to measure progress. For a broad goal, the team might write: "Student will use five expressive signs during meal time and snacks, independently, eighty percent of the time, measured by teacher observation." For a more specific goal, the team might write: "Student will use name sign to greet nurse when he gets meds, independently, eighty percent of the time, measured by teacher observation." Specific objectives work best for students with severe impairments.

Skill

A skill is the behavior to be learned. The phrase following the word "will" in the objective is usually the skill. In a transdisciplinary IEP, specific discipline skills are imbedded in objectives. An objective might be that a student will assist during meals by opening his mouth for bites. The VI teacher might add that the student will open his mouth for bites when a brightly colored spoon is moved slightly in the right peripheral field of the right eye from a distance of six inches.

Activity

An activity is the context in which the skill will be used. The phrase following the word "during" in the objective is usually an activity. Teams include information about context in objectives to make measurement more meaningful.

Modifications

These are the techniques, technology, and strategies which are necessary to ensure the highest level of participation for the student in the activities of his school day. Federal law requires that these be specified in the IEP. Most school districts include a generic modification page in the ARD papers. Some of these may be useful, but teams have to come up with more specific modifications in order for progress on objectives to occur. A general modification for a special education student might be "shorten assignments." A specific modification for a student with severe impairments might be "use adapted spoon."

Some teams continue to write traditional IEP's in which each team member comes up with his or her own set of goals and objectives. Students with severe impairments can't usually learn as many things as team members can come up with to try to teach them. Also, when team members are trying to teach too many things, they tend to scatter their energy and not teach any one thing very intensely. Teams tend to be more accountable when they focus their attention by writing one collaborative IEP. In this approach special skills are integrated into short-term objectives.

Student: Catherine 
Date Accepted by ARD Committee: 5/1/95 
Annual Goal: Will improve functional use of objects*

Short-Term ObjectivesEval. Method
Observation Formal testing
Criteria 
(Accuracy Level)
TargetedPresent  CompetenciesMet  Y/N
1. Will visually locate a desired object in an adapted environment during rec/leisure time. 
Direct Implementor(s): Classroom Teacher/TA 
Support Staff Responsible: VI Teacher 
Begin Date: 8/95 End Date: 5/96
Observation Independent Frequent physicalmanipulation  
2. Will look at an object presented by a caregiver to request continuation of an activity during grooming activities. 
Direct Implementor(s): Teaching Asst./Mother 
Support Staff Responsible: VI Teacher 
Begin Date: 8/95 End Date: 5/96
Observation 90% 20%  

* Sensory skills are integrated in short-term objects.

Sometimes a column for modifications is added. The example given in objective number one might include: Modifications: Den/Little Room

How is instruction provided in natural contexts by the whole team?

routine is a teaching strategy that focuses the team's efforts on specific activities that occur with high frequency in the student's schedule. Routines are designed to teach specific special skills to students who require consistency and repetition in order to learn. As skills are learned, the student's level of participation in activities increases. Any activity can be developed into a routine when team members plan what they will teach and adapt for a given student. An activity is not a routine unless it meets the following criteria:

  • There is a clear signal to the student that the activity is starting.
  • The steps of the activity occur in the same sequence every time.
  • Each step is done in the same way each time (same materials, same person, same place).
  • Modifications and techniques provided by specialists are implemented exactly as directed.
  • The minimum amount of assistance is provided in order to allow students to do as much as they possibly can.
  • The pacing of instruction is precisely maintained until the activity is finished (no side conversations, going off to get something you forgot, or adding new or different steps that won't happen the next time the activity is done).
  • There is a clear signal to the student that the activity is finished.

Why are routines worth the trouble?

The power of a routine is the precise planning of what the student will do and how he will do it on each step of the routine. Many students are able to learn new skills and participate at higher levels when this strategy is used because they need the following things that routines provide:

  • Predictability: "I know what is going to happen from start to finish."
  • Consistency: "I know what I am supposed to do."
  • Anticipation: "When you do that, I know what to get ready for."
  • Practice: "I remember what I did last time and I can try to do more this time."

Students with severe impairments rarely do every step of a routine independently, but they are afforded the dignity of doing everything that they are cognitively and physically capable of doing.

What do routines look like?

Mealtime is a good activity to develop into a routine because it usually happens three times a day. Practice opportunities are frequent. The team's plan might look something like this:

  1. Get spoon from calendar box to begin activity. 
    Target skill: Tactual exploration of objects in calendar to recognize spoon. 
    Person responsible: VI teacher. 
    Strategy: VI teacher demonstrates shadowing technique to TA to decrease student's aversion to hand over hand manipulation.
  2. Take spoon to eating area. 
    Target skill: Maintain grasp, intentional release. 
    Person responsible: OT 
    Strategy: OT demonstrates use of "buncher" for grasp and pressure point technique for release to T.A. who will implement instruction.
  3. Give spoon to adult to request meal. 
    Target skill: Use object to request. 
    Person responsible: Speech/Language Pathologist (SLP) 
    Strategy: SLP demonstrates touch cueing technique to TA who will implement instruction.
  4. Eat. 
    Target skill: Manipulate spoon for scooping. 
    Person responsible: OT 
    Strategy: OT provides adaptive equipment and demonstrates technique to TA who will implement instruction.
  5. Put spoon in washtub at dish window to end activity. 
    Target skill: Maintain grasp, intentional placement. 
    Person responsible: OT and VI teacher. 
    Strategy: OT demonstrates arm support technique to TA who will implement instruction. VI teacher provides visual enhancement of target.

How do specialists help other team members address needs in their areas?

Transdisciplinary teams use a procedure called role release. Any team member having special skills may train any other team member needing those skills. The need for a team member to have certain skills is usually dictated by scheduling. Specialists cannot always be present when a skill needs to be taught in a natural context. Specialists have certain responsibilities. They cannot release their role to another until that person demonstrates that she can perform without prompts. The specialist must then monitor the activity to ensure that the released procedure is performed as taught.

The role release process usually consists of the following steps:

  • The specialist and other team members share information related to the need.
  • The specialist teaches the designated person(s) a specific procedure to address the need.
  • The specialist supervises the implementation of the procedure and makes adjustments as needed.

Communication among team members is essential in the role release process. Members must be able to ask questions, seek help, and respond quickly. Here are some tips for increasing and maintaining contact:

  • Schedule time to observe activities.
  • Review videotapes of activities between observations.
  • Attend team meetings.
  • Post notes to team members on a special bulletin board.
  • Keep documentation in an area where all team members can access it.
  • Keep a school/home notebook.

How do teams document student progress?

There are two things to remember about documentation:

  • It is important because team members have to know what's working and what isn't working
    Students with severe impairments don't fail to make progress, but teams may fail to provide the necessary level of support in order for progress to occur.
  • It must be easy to gather so that it does not take time away from teaching and attention away from the student.

Different kinds of documentation are appropriate in different situations. Here are some common types:

  • Frequency Tally Method: A mark is entered each time the designated behavior occurs. The event may be a student behavior (signed "more") or the event may be a teacher behavior (touch prompt given).
  • Annotation: The teacher may write a comment describing the student's performance on a given trial.
  • Plus/Minus: The target skill occurred or did not occur.
  • Level of Prompt: A letter is entered to indicate the highest level of prompting given during the trial (hand-over-hand, touch prompt, verbal prompt, independent).

Be consistent. Decide which method fits best for a given situation and stick with that method. The whole team must use the same methods in the same situations.

Routine and data sheet sample.

An example of a routine with annotative documentation is included on page thirteen (Routine and Data Sheet). Notice that documentation is kept only if the step is one in which an IEP objective is addressed. If there is no number in the IEP column, no documentation is kept.

How do specialists document service time?

Parents typically do not demonstrate a high degree of confidence in consultative services. Some demand direct service because they fear that their children's needs will not be addressed adequately in a consultative model. This can be counterproductive for students with severe impairments who need frequent intervention in natural contexts. One way to assure parents and other team members that real help is being provided is to share documentation.

Most specialists are used to keeping records of some sort for their supervisors. These may consist of student contact logs or observation summary forms. An example of a contact sheet which emphasizes the team approach is shown on page fourteen (Sample of a Collaborative Service Delivery Contact Sheet).

Routine and Data Sheet 
Student: 
Catherine 
Routine: Hair Care Time 
Implementor: Classroom Teacher, TA 
Time: 9:00 a.m. 
Location: Classroom

Routine StepsAdaptation/ModificationIEPComments/Data
1. Travel to hair drying area. Chair pushed to hair drying area. Looks at caregiver to signal readiness.    
2. Visually locate hair dryer. Caregiver wears dark-colored smock against which bright yellow hair dryer is held. Use object lighting, if necessary. #1 Looked at hair dryer on third  of three presentations after light enhancement provided.
3. Turn desired part of head/ face to airflow as caregiver holds dryer.      
4. Visually locate hair dryer each time care-giver turns it off to request continuation of activity. See #2 #1 Looked at hair dryer on second and fourth - presentations no light.
5. Visually locate hair-brush held by teacher. Caregiver holds bright red  hairbrush against smock. Use object lighting, if necessary. #1 Did not respond, four presenta tions with light (contrast may not be adequate, try different  colored brush.)
6. Cooperate while hair is brushed by caregiver.      
7. Travel to area of next activity. Looks at caregiver to signal  readiness for lift. Chair is pushed to next area.    

Documentation Date: 10/7/95 Documentor's Signature: (VI Teacher)

Sample of a Collaborative Service Delivery Contact Sheet

Student: Catherine 
Service Provider: M. Smith, VI Teacher

DateTime InTime OutStaff PresentService Delivered
2/7 9:30  10:00 T. Johnson, Linda Evaluated visual responses (JVE)
2/11 2:00 2:30 Linda Evaluated visual responses (JVE)
2/18 3:00 3:30 T. Johnson, Linda & Parent Wrote activity routine
2/22 9:30 10:00 Linda Role release hair dryer procedure
3/12 9:30 10:00 Linda Observed & modified hair routine

Administrator's Signature: _______________________

Conclusion

Remember Joseph's coat. It was made a piece at a time. It might be a good idea to remember that Joseph probably wore some other garments as well. If your team ends up with a vest or a really good pair of socks, success is just as sweet. Good luck!

Fall 1999 Table of Contents
Versión Español de este artículo (Spanish Version)

By Deborah Chen, Ph.D. Professor, California State University, Northridge

Reprinted with permission from reSources, Volume 10, Number 5, Communication Issue, Summer 1999, Published by California Deaf-Blind Services

All infants communicate through crying, fussing, smiling, body movements, and other nonverbal behaviors. With repeated interactions, their parents, families, and other significant caregivers interpret the meaning of these signals and respond accordingly. Through these early exchanges, infants discover that their behaviors have a powerful effect on their caregivers and develop more efficient ways to communicate - through gestures and words. However, when infants have a visual impairment and hearing loss in additional to other disabilities, the communication process does not develop naturally. Their early communicative behaviors may be subtle or unusual and therefore difficult to identify and interpret. For example, an infant (who is totally blind and hard of hearing) may become quiet when her mother speaks to her. This passivity may be misinterpreted as disinterest rather than attentiveness. Another infant (who has cerebral palsy and is deaf) may grimace his body when his father picks him up. These behaviors may be misinterpreted as rejection rather than excitement.

At the same time, our usual responses, i.e. by talking to hearing infants or by signing to deaf infants, may not be understood or even perceived by infants with sensory impairments and multiple disabilities. Communication with these infants requires careful planning, consistent attention, and specific procedures. The purpose of this article is to discuss selected strategies that families and service providers can use for communicating with infants (birth to 36 months) who are not yet using words and who have significant and multiple disabilities.

Getting Started

Because the meaning of an infant's early communication behaviors is tied to context, we must first identify how and why an infant communicates during familiar activities. These observations provide information on an infant's current level of communication and ways to support interactions.

Make careful observations to interpret infant behaviors

  1. Observe the infant in an everyday care giving activity (e.g. diaper change, dressing, feeding, or bath time) and a familiar social activity (e.g. being tickled, action songs, being rocked, or other early games). 
  2. Identify how the infant shows interest, dislike, fatigue, or boredom though his or her behavior.
  3. Identify whether the infant communicates for (a) behavior regulation (e.g. to get someone to stop or start doing something by protesting, refusing, or rejecting; requesting objects; or requesting actions); or for (b) social interaction (e.g. to get someone's attention by greeting, seeking attention; requesting social routines; or requesting comfort).

Next, we should find out about the family's typical activities and communication practices. This way, strategies will be tailored to fit the family's lifestyle and will be more useful to the family.

Family information

  1. What is a typical day like for your infant? 
  2. What are your infant's favorite objects, activities, and people? 
  3. What are your infant's most disliked objects, activities, and people? 
  4. How does your infant communicate with you? What is he or she usually trying to tell you? 
  5. When is your infant the most communicative? 
  6. Have you found any special ways that help you to communicate with your infant? 
  7. What activities do you enjoy doing with your infant? 
  8. What songs or baby games do you play in your family? 
  9. What words do you use frequently in everyday activities with your baby? 
  10. What do you say when your baby does something that you like or makes you feel proud? 
  11. When is a good time or what is a good activity for playing with your baby?

Taking time to discuss these questions is important for all families and absolutely essential when service providers and families have different cultural and linguistic backgrounds. Otherwise, a service provider's suggestions for supporting the infant's communication may conflict with family practices. For example, an infant may be confused if an English-speaking service provider says "good boy" to praise him while his Spanish-speaking mother says "bravo." Explanations of sign hand shapes based on English letters, e.g. "S hands" for the sign SHOE, will not make sense to non-English speaking families who do not know the manual alphabet and is not immediately useful if the infant does not wear shoes. Only through careful observations of the infant and thoughtful discussions with families, can service providers suggest communication strategies that are most appropriate for a particular infant and respectful of the family's culture.

Selected Strategies

We must differentiate between the methods for communicating with an infant (input) and the ways in which an infant is most likely to communicate (output). Input and output communication methods must be tailored to meet the individual learning needs of each infant. For example, a mother may ask an infant "want to swing?" by using an object cue (a blanket) for input, while this infant indicates "yes' by wiggling her body (output).

Communication Input must be Accessible to the Infant

Make use of the infant's available senses

Infants with multiple disabilities must receive comprehensive audiological and ophthalmological evaluations since they are more likely to have vision and hearing problems than infants without disabilities. An infant's visual impairment is usually identified before a hearing problem because it is more obvious. If an infant is identified as having a visual impairment and hearing loss, then every effort must be made to determine whether the infant would benefit from corrective lenses and hearing aids.

Communication tips

  • Speak naturally and close to an infant's ear. This is a natural way to help the infant discriminate speech from the environmental sounds, particularly if the infant has a slight hearing loss, middle ear infection, or other hearing problem, and does not wear a hearing aid.
  • Reduce unnecessary noise. Turn off the television or radio and reduce other background sounds if you want the infant to pay attention to what is being said or other spoken information. The signal (speech) must be at least 30-40 dB louder than the background for a hearing infant to be able to attend to it; so background sounds will interfere with the ability to understand what is said.
  • Hold the infant on your chest and dance or sway in time to vocalizations to help the infant make a connection between sound and movement.
  • Imitate the infant's own vocalizations or actions. Infants will imitate behaviors that are within their own repertoíre before they imitate new behaviors. These imitation exchanges can become enjoyable turn-taking games.
  • Develop other infant games, for example, by playing "peek-a-boo" and removing the scarf from the infant's face after saying "peek-a-boo" or bouncing the baby in time to vocalizations.

Anticipatory Cues

Anticipatory cues are specific sensory prompts to help prepare the infant for an upcoming activity. They include: tactile cues (e.g. "let’s put your sock on" may be communicated by touching the infant’s foot which is a touch cue) or by having the infant touch the sock (object cue); auditory cues (e.g. tapping the spoon against the bowl to indicate "let's eat"); kinesthetic cues (e.g. rocking the infant in your arms before placing her in the hammock); olfactory cues (e.g. having the baby take a whiff of the soap before bathing him); or visual cues (e.g. wiggling your fingers in the infant's visual field before picking him up). Do not use cues that elicit a negative reaction or are difficult for the infant to perceive. For example, for infants who have had many pricks on their feet from blood tests, touching the foot would be an aversive tactile cue for "let's put your socks on." Other infants may be very sensitive to certain scents and react negatively to olfactory cues. Cues should be selected carefully for each infant, made in a consistent and precise manner, and have a clear connection with what they represent. This way the infant can develop an understanding of their meaning. For example, an infant will be confused if different tactile cues are used for the same message (e.g. touching the lips, or the chin, or the cheek to indicate "let's eat") or if different tactile cues on the face have different messages (e.g. touching the lips means "let's eat", touching the chin means "open up for your toothbrush").

Frequently Asked Questions About Cues

Is there a certain sequence for using cues with infants?

There is no research on the use of cues with infants to guide how they should be introduced. Cues should be individualized for each infant and dependent on the specific activity. However, a helpful principle is to begin with a cue that will be easily understood by the infant, that is clearly related to the activity, and that is presented immediately before the activity begins. For example, initially, it is probably easier for an infant to understand "get ready for your bath" through a tactile cue (putting his hand in the water just before being put in the tub) than being given a whiff of bath soap (olfactory cue). Begin with just a few cues that are very different from each other, and that represent different activities, and are therefore easy for the infant to discriminate and to discover what they mean. For example, use a tactile cue for bath time (putting the infant's hand in the water), a touch cue for diaper change (tug on the infant's diaper), and an object cue for playtime (quilt for the blanket swing).

What is the difference between a sign and a cue?

A manual sign is a symbol, a word, or a unit of language that represents something. For example, the sign MAMA represents mother no matter the situation. A cue is a prompt that is individualized for each child, is dependent on the specific activity or context, and is used to encourage a specific behavior. For example, tapping a child on the chin may be a prompt for "open up" if the caregiver wants to brush the child's teeth; or for "take a bite" during meals; or "close your mouth" to prevent drooling.

Key Word Signs

Many infants with multiple disabilities benefit from key word signs which are selected signs adapted for the infant's learning needs. Using key word signs is not the same as using the simultaneous method (spoken English together with a sign system based on English) or using American Sign Language (ASL) which has its own grammar and visual-spatial rules and is a different language than English. Initially, a key word sign is really a prompt or cue to engage the infant's attention and to build an understanding of the meaning of a word and what it represents. For example, the sign EAT made either by the adult touching the infant's lips with a flat O handshape or by assisting the infant to touch his own lips is really a touch cue or gesture rather than a sign. When key word signs are used with infants who have low vision, the infant's visual needs must be considered. Signs should be made so the infant can see them, that is, within the infant's visual field and at an optimal viewing distance; the rate of sign production and size of hand movements should be modified to enable the infant to see the sign; and the signer's hands should be clearly visible in contrast to his or her clothing.

Selecting Key Word Signs for Communication Input

  1. Ask the family to make a list of words that are most important for communicating with their baby. 
  2. Develop a list of vocabulary with family members and service providers, decide on the signs to be used for these words, identify any adaptations that are needed, and use selected signs consistently across activities.

Selected Adaptations for Key Word Signs

  • Make signs on the infant's body.
  • Physically guide the infant to produce signs (coactive signing).
  • Make signs smaller and close to the infant’s face.
  • Orient the infant’s attention to a signer by touching the infant’s face or body.
  • Use tactile modeling by placing the baby’s hands on yours to feel the sign movements (interactive signing).
  • Match the number of movements of the sign with the number of syllables in the word when providing communication input, e.g. MAMA is two movements.

Build on the infant’s interests and strengths. Infants are likely to attend to objects, activities, and people they like and are more likely to request these favorite things. For example, an infant who loves movement will be motivated to ask for "more" of a bouncing game. This favorite activity may be used in an interrupted routine strategy to elicit communication output, as shown below. Selected methods for encouraging the infant’s expressive communication should be based on the infant’s abilities. For example, infants who can control their hand movements are more likely to use some signs expressively than infants who have motor problems. An infant is more likely to make a choice between a favorite object and a disliked object than between two objects of equal appeal.

Interrupted Routine Strategy

  1. Select a movement activity that the infant enjoys and do about three movements.
  2. Create a need for the infant to communicate by stopping the movement.
  3. Wait quietly (count silently to 10 or 15 depending on the infant’s response time) and observe what the infant does.
  4. If the infant responds, interpret the infant’s behavior as communicative. Add words to the infant’s behaviors. Respond to the infant’s communication by continuing the activity.
  5. If the infant does not demonstrate an observable response, prompt the desired response (e.g. wiggle the infant’s arms or legs), and immediately continue the activity.

Repeat this prompting procedure two more times so that the infant has three direct instruction experiences. Then repeat from Step 3: interrupt the activity and wait quietly for the infant’s response.

Criteria for Selecting First Signs For Promoting Communication Output

  1. Identify the infant’s favorite activities, objects, and people based on observations and the family interview described previously.
  2. To represent these preferences, select signs that are easy to produce, touch the body (e.g. EAT, MAMA), have symmetrical movements (e.g. MORE), and look like or feel like what they represent (e.g. EAT, WASH, DOWN)
  3. Provide frequent opportunities for the infant to use these signs.

Considerations for Selecting Key Word Signs as Communication Output for Infants with Motor Problems

  • Identify key words that have been selected by the infant’s family and service providers and determine their usefulness for the infant’s expressive communication.
  • Determine whether a manual sign is the most effective way for this infant to express a desire or need. What type of physical assistance does the infant need to produce the selected sign? Is there an easier way for the infant to communicate (e.g. using an object, picture, or other signal system)?

Provide time and repetition. Very young children without disabilities need to hear a word used in context about 200 times before they use it. Infants with multiple disabilities will need even more repeated experiences to understand the meaning of a cue or word used in everyday activities. This significant need for consistency and repetition highlights the importance of making communication an essential part of every learning activity and daily routine. Not only the infants, but everyone involved with them - family members and service providers - should all be learning how to communicate.

Annotated Bibliography

Selected resources for supporting early communication with infants who have severe and multiple disabilities:

Bricker, D., Pretti-Frontzak, & McComas, N. (1998). An activity-based approach to early intervention (2nd ed.). Available from Paul H. Brookes Publishing, Baltimore, MD,  (800) 638-3775. Provides a process and format for infusing early intervention objectives within an infant’s daily routine.

Casey-Harvey, D.G. (1995). Early communication games. Routine-based play for the first two years. Available from Communication/Therapy Skill Builders, San Antonio, TX,  (800) 211-8378. Play activities which support early communication development of infants.

Chen, D. (Ed.) (in press). Essential elements in early intervention: Visual impairments and multiple disabilities. Available from AFB Press, New York,  (800) 232-3044. Chapters on a variety of topics including early intervention purposes and principles, meeting the intervention needs of infants with multiple disabilities, caregiver-infant interaction, early communication, functional vision assessment and interventions, understanding hearing loss and interventions, clinical vision assessments, audiological evaluations, creating meaningful interventions within daily routines, and adaptations for including preschoolers with multiple disabilities in typical settings.

Chen, D. (1997). What can baby hear? Auditory tests and interventions for infants with multiple disabilities [closed captioned video & booklet]. Available from  Paul H. Brookes Publishing, Baltimore, MD,  9800. 638-3775. Video examples of audiological tests, functional hearing screenings, interviews with parents and early interventionists, and classroom activities with infants.

Chen, D. (1998). What can baby see? Vision tests and interventions for infants with multiple disabilities [closed captioned video & booklet]. Available from AFB Press, New York,  (800) 232-3044. Video examples of clinical vision tests, interviews with parents and an early interventionist, and related activities with infants.

Chen, D., Friedman, C.T., & Calvello, G. (1990). Parents and visually impaired infants. Available from American Printing House for the Blind, Louisville, KY, (800) 223-1839. Collection of protocols for gathering information and developing intervention activities for infants with visual impairments based on observations and caregiver interviews, for using videotaped data collection, tips for conducting home visits, and for developing home-based social routines.

Chen, D., Klein, D.M., & Haney, M. (in review). Project PLAI. Promoting learning through active interaction [closed captioned video]. For information contact or call (818) 677-4604. Video examples of a five step process for developing communication with infants with multiple disabilities including visual impairment and hearing loss.

Chen, D, & Schachter, P.H. (1997). Making the most of early communication. Strategies for supporting communication with infants, toddlers, and preschoolers whose multiple disabilities include vision and hearing loss [closed captioned video & booklet]. Available from AFB Press, (800) 232-3044. Video examples of early caregiver-infant games, simulations of visual impairment and hearing loss, strategies to promote communication with infants and preschoolers, interviews with parents and teachers, and activities in an oral communication preschool class, and in total communication classrooms for toddlers and preschoolers.

Freeman, P. (1985). The deaf-blind baby: A programme of care. Available from William Heinemann Medical Books, 23 Bedford Square, London, WCIB 3NN, England. A comprehensive guide of strategies to support the early development of infants who are deaf-blind.

Gleason, D. (1997). Early interactions with children who are deaf-blind. Available from DB-LINK, (800) 438-9376. Booklet on early communication strategies.

Harrell, L. (1984). Touch the baby. Blind and visually impaired children as patients - helping them respond to care. Available from AFB Press, (800) 232-3044. Booklet that discusses touch cues and signals to help prepare an infant for uncomfortable procedures in a doctor’s office or hospital.

Klein, M.D., Chen, D., & Haney, M. (in review). Project PLAI. Promoting learning through active interaction. A curriculum facilitating caregiver interactions with infants who have multiple disabilities. For information contact or call (818) 677-4604. A curriculum composed of 5 modules for developing early communication with infants with multiple disabilities including visual impairment and hearing loss.

Lueck, A.H., Chen, D., & Kekelis, L. (1997). Developmental guidelines for infants with visual impairment. A manual for early intervention. Available from American Printing House for the Blind, Louisville, KY\, (800) 223-1839. A review of related developmental research with implications for early intervention and suggestions for activities in the following areas of development: social-emotional, communication, cognitive, fine motor, gross motor, and functional vision.

Lynch, E.W., & Hanson, M.J. (1998). Developing cross-cultural competence (2nd ed.). Available from Paul H. Brookes Publishing, Baltimore, MD,  (800) 638-3775. A comprehensive and invaluable source. Provides a review of the literature related to cultural diversity, child-rearing practices, cultural perspectives on disability, and healing practices. Identifies the process of developing cultural-competence with particular implications for early interventionists. Specific chapters discuss working with families of Anglo-European, Native-American, African-American, Latino, Asian, Pilipino, Native Hawaiian, and Middle Eastern backgrounds.

Morgan, E.C. (Ed.). (1994). Resources for family centered intervention for infants, toddlers and preschoolers who are visually impaired. VIISA Project (2nd.). Available from Hope, Inc. Logan, UT,(435) 752-9533. A comprehensive two volume guide for addressing the intervention needs of young children with visual impairments. Topics include: working with families, support services, early intervention programs, transition, preschool programs, and curriculum units (communication, language, social-emotional development, child-care and self-care, orientation and mobility, learning through the senses, and cognitive development).

Rowland, C. (1996). Communication matrix. A communication skill assessment for individuals at the earliest stages of communication development. Available from Oregon Health Sciences University, Center on Self- Determination, 3608 SE Powell Blvd, Portland, OR 97202. An instrument which identifies the range of communication development from pre-intentional behavior and intentional behavior to the use of abstract symbols and language.

Watkins, S. (1989). A model of home intervention for infant, toddler, and preschool aged multihandicapped sensory impaired children. The INSITE model. Available from Hope, Inc. Logan, UT,  (435) 752- 9533. A comprehensive two volume resource which provides practical information for the role of parent advisors (early interventionists) in working with families and strategies for enhancing early communication, hearing, vision, cognition, motor, and social-emotional development.

This document is supported in whole or in part by the U.S. Department of Education, Office of Special Education Programs, (Cooperative Agreement No. H326C030017). However, the opinions expressed herein do not necessarily reflect the policy or position of the U.S. Department of Education, Office of Special Education Programs, and no official endorsement by the Department should be inferred. Note: there are no copyright restrictions on this document; however, please credit the source and support of federal funds when copying all or part of this material.

Gisele Gigi Newton, Texas Deafblind Outreach

If you are sick and have a choice, do you go to just any doctor or to one that you are familiar with? If you didn’t have a doctor you trusted you may pick your doctor out of the phone book, but you are more likely to ask people you know (and trust) for recommendations. If you tried a new doctor and found that you really do not trust or like her, would you stay with her? Not if you had other options. Even with something that is not as critical as health care such as a hair stylist or a car mechanic, you don’t want to come back to people who you do not trust or like.

When I first became a classroom teacher, I believed my students would like me simply because I was “their teacher”! Well, let’s think about this.

Did they know me? NO!
Did someone tell them I was an okay person? NO!
" Did they get to pick me for their teacher? NO!

Building trust with your student is a critical first step in providing instruction, especially if the child is deafblind. Here are some simple suggestions on how to build trust in your relationship with you student who is deafblind.

  1. I believe it is critical for a new person to be introduced to the child through their parents or other trusted adult and in the child’s familiar environment, typically their home setting.
  2. Ask the parent to put guide their child’s hand (using hand-under-hand technique) and gently to yours.
  3. Allow the child all the time he/she needs to feel hands, rings, your watch or other distinguishing features such as your hair or mustache.
  4. If the student does not readily explore using hands, the parent may want to keep his/her hands in proximity to the child’s just to reassure or confirm that they know you and that you are okay.
  5. Have the parent or trusted adult say your name while the child is exploring to learn who you are.
  6. You may also want to have the parent(s) engage the child in a favorite turn-taking activity such as hand game, singing, or rocking and then gradually bring the into the game with them. Physical proximity to the child and their parent allows the child time to get used to you from a place of safety.
  7. Don’t separate the child from the parents until you have been “blessed” and the child will interact briefly with you or consent to have you included in the interaction.

Building trust is such an important part of any relationship, and sometimes it takes so little to put a child at ease. Going into the child’s home and being “introduced” to the child by his/her parents has always opened the door for me or if not going into the home, at least making sure I have been properly recommended by someone the child trusts. Maybe the child recognizes the sound of my voice, my scent, or some item I regularly wear (such as a bracelet or ring). Maybe he/she remembers playing with me and his/her parents. Whatever it is, the child always seems to feel more at ease when he encounters me outside the home. It’s almost as if I hear him/her saying, “I remember you! You were in my home last night. You played with me and my Dad. You must be okay.”

Lesson 1: Copying Single Symbols

Procedure

  1. Introduce today’s lesson by saying you will be working on copying with the monocular.  For copying lessons, the student will need to be seated comfortably positioned and facing the chart, feet resting on a surface.  He will need to have a piece of paper, pencil, and colored pencils or markers on his desk.
  2. Copying with the monocular requires constant looking, placing the monocular down, and writing on paper.  The monocular can either be worn around the neck, or placed on the desk so that it won’t roll off.  A thick rubber band looped around the monocular will slow it from rolling, or use a “rollbuster” for this purpose (available from APH).
  3. Ask the student to number his paper to correspond with the chart* activity you have prepared.  Place the chart far enough away that the student has to use his monocular.  Ask the student to focus on the chart, scan it and tell you what the format is.
  4. Depending on the age and level of your student, he should begin looking at #1, and copying what he sees onto his paper.  This can be single letters/numbers/shapes, or short words.  Introduce the word “peek”.  Encourage the student to take one peek per symbol or word, try to remember it, and copy it down on their paper without taking a second peek at the same item.  (you are building visual memory, which will be necessary for copying longer information passages)
  5. After the student has completed #1, instruct him to now take another peek at the #1 on the chart.  Is his the same?  He should make any corrections if needed at this time.
  6. Continue in this manner until he finishes copying everything on the chart.

*Charts typically used are called 1” Ruled Chart Tablets.  The 24”x16” sized spiral is most convenient for the itinerant teacher.  When preparing materials in charts, leave a blank page between pages for easier viewing.  Write on charts using a dark marker with a wider point, such as the Mr. Sketch markers. 

 

Lesson 2: Copying Words and Short Phrases

Procedure

  1. Check the condition of the monocular.  Is it stored safely and conveniently?  Is it in good condition?  Ask your student if he had the opportunity to use the monocular during the week.  If so, what did he use it for?
  2. Today you will introduce a reinforcement system for correct and frequent use of the monocular.  For now you will only be concerned with speed and accuracy, and the frequency of use will be measured once the student knows how to copy up to approximately 5 words per peek.  Your reinforcement system should include:
  • list of (monocular) behaviors you want to reinforce
  • list of things the student enjoys (is willing to work toward)
  • “price list” of what each privilege will cost
  • record of points earned and exchanged
  • progress sheet of speed and accuracy
  • record of things the student can see at a distance with and without the monocular
  1. For this activity, use a chart prepared with one numbered column of words.  The words can be reading vocabulary, spelling words, or similar words used within the context of the classroom and/or expanded core curriculum.  The words list you prepare could also consist of words that apply to a hobby the student has, such as the names of baseball players, collecting cards, etc.
  2. Instruct the student to first scan the entire chart, tell you what the format is, then number his paper to correspond to the chart.  He should then proceed to copy the words, one peek per word.
  3. At this point you will introduce proof reading his work.  When he is finished copying the list, ask him if he thought he missed any words.  Encourage him to compare the work on his paper with the words on the chart.  Count the number of words correct, and reinforce.
  4. Write down the number of words correct on the new reinforcement and progress chart.  Start counting points for this paper.

 

Lesson 3: Copying Words and Short Sentences or Phrases

Procedure

  1. Prepare riddles on a chart, with the answer to the riddle hidden under a flap.  The student should number his paper to 10 (or for however many riddles you have prepared on your chart).  He should scan the page to find the general layout of the information, then begin by reading all the way through the first riddle.  Once he has read it, he should return to the beginning of the line and start to copy, one word at a time (or more than one word if he is capable of doing this).  He should turn his paper over to write the answer to the riddle.  Younger children enjoy making and illustrating their own riddle book to read to a friend.
  2. When he has finished copying the sentence/phrase, ask your student to check his work and make any corrections before you check it for accuracy.
  3. Continue in this way until he has copied about 5 riddles.
  4. Fill in the progress chart for this assignment.

 

Lesson 4: Copying Longer Sentences and Paragraphs

Procedure

  1. Prepare a chart with a poem you think the student might enjoy.  Shel Silverstein tends to be a popular choice.  Limericks also work nicely, as well as tongue twisters. For older students, use materials of interest, such as the lyrics to a popular song (find these at web sites).
  2. Instruct the student to scan the entire page to get an idea of the format, and then to read the entire poem/lyrics out loud.
  3. Tell the student that today you are going to see how many words he can copy with the fewest amounts of peeks.  To do this, he must read, remember, then write down as much as he can.  (Try to make this sound like it will be great fun!)  Watch as he copies, and note the number of words he copies per peek.  What happens when he comes to longer, more complex words?
  4. When he is finished, provide him with feedback on how many words he was copying per peek (average).  Ask him to proof and correct his work.  Enter the information (words per peek) on his progress chart.
  5. As the student gets better at copying sentences, you may want to introduce a stopwatch and allow him to time himself as he completes a copying assignment.  The goal is to decrease the amount of time it takes to copy as many words as possible.  Times can be entered on the progress sheet.

 

Lesson 5: Copying Math Formats

Procedure

  1. Prepare a chart with math problems that you know will not be difficult for the student.  One format that works well is the one in which each answer provides a letter of the alphabet that then leads toward the answer of a riddle (for younger students).
  2. Instruct the student to scan the entire page to get an idea of the format, and then number his page to correspond to the chart.
  3. Since copying numbers is typically slower because there are no context clues, do not stress copying with fewer and fewer peeks. The student should proceed to copy and answer the math problems and check his work.
  4. Many classrooms use an overhead projector to demonstrate how to work math problems.  Arrange for this type of practice in an empty classroom, if possible, as it can be much harder for students with some types of etiologies to copy from a source that is emitting light.

From Winter 97 issue

by Robbie Blaha, Education Specialist
and Kate Moss, Family Training Specialist, TSBVI Deafblind Outreach

En Espanol

One of the typical modifications recommended for many children with deafblindness is the use of some type of calendar system. While these devices are very effective, often times parents and even the professionals can be unsure about how the calendars should be used and even why the calendars are needed.

What is a calendar system?

The term "calendar system" typically brings a device: a dayrunner, a wall calendar, a van Dijk calendar box. A device or time piece is an important part of any calendar. Using a calendar program with a child also supports the development of communication, provides emotional support and power, as well as, teaches abstract time concepts and vocabulary.

Why use a calendar system?

There are a number of reasons a calendar system is often recommended for a child with deafblindness. The calendar system provides emotional support to the child in the following ways:

  • It provides the child the security of knowing what is going to happen next. Because of the sensory loss the child experiences, he/she may miss natural cues related to future events.
  • It gives the child things to anticipate. Looking forward to a fun event can lift the child's spirits and help him stay connected with the world outside himself.
  • It alerts the child that an unexpected change in routine is going to occur. Having the opportunity to prepare for a change often makes the change less stressful.
  • It allows the child to participate in decisions about the days events. This gives the child a sense of control in his/her life.

Another very important reason a calendar is used is that it helps in the development of communication skills in the following ways:

  • It allows the child to talk about things that have happened in the past or will happen in the future.
  • Using the calendar format and symbol provides the child and you with a mutually understood topic for dialogues.

A calendar is also invaluable in developing time concepts because:

  • It provides a clear way to represent the passage of time which helps teach the child beginning time concepts (past, present, future events).
  • It aids in teaching more advanced time vocabulary such as "wait," "later," "afternoon," "morning," "day," "night," etc.
  • It provides an individualized time piece for the child that is easy for him to understand.
  • It prepares the child to learn more abstract and traditional time pieces (watches, datebooks, etc.).

Before you begin a calendar

Before you begin a calendar system, a student's individualized communication program must be in place, that is, appropriate goals and objectives must be determined. If you aren't clear about what you want the child to do (i.e., request, reject, initiate a conversation, use object cues, etc.) you cannot develop a calendar dialogue, pick appropriate symbols, etc.

Activity routines must also be developed so that you have something to represent in the calendar. Don't start a calendar until these two things are in place.

When these two things are done, the time frame must be selected that is appropriate to represent to the child. Although there are five time frames typically used in calendar systems this article will look at only two of these which are called "anticipation calendars" and "daily calendars."

ANTICIPATION CALENDARS

The child who uses an anticipation calendar

You would begin with an "anticipation" level calendar if a child is demonstrating only a very basic understanding of the activities which you want to represent in the anticipation calendar. The following are traits typical of a child at this level of calendar usage:

  • The student recognizes some of the people, locations, sounds, smells, objects, and actions associated with a few of his activities. For example, in a familiar skating activity, she knows to raise her foot when presented with her roller-skate and will reach out her hand to grasp the walker when it is presented. This indicates that she has a memory of the object and what she does with it. She would not offer you her foot when you showed her the walker. An object must be recognized by the child in the routine before it can serve as a cue out of the routine.
  • She may or may not anticipate the start of an activity based on signal level cues. As a rule, children who benefit from anticipation systems do not currently recognize an activity or routine until they are actively engaged in it.
  • When participating in predictable routines, the child understands when the activity is finished.
  • The child is at an early stage of "representation" and has no organized way to request preferred activities or to reject them.
  • The child needs a great deal of support to attend to things outside of her body.
  • The child will accept brief interactions with others.

Designing the time piece

The child at the anticipatory level has a past that consists of the activity he has just completed. His future is the activity about to take place. You will need a container (the time piece) to represent both the future and past activity. It is important to make these two containers different from each other (i.e., a green bowl for the future, and a red plastic basket for the past).

Selecting symbols for the anticipation calendar

It is important to select an object which the child has consistently responded to or correctly used in a favorite activity. The child must have had a meaningful experience with this object in the context of an activity before he can recognize it out of context (i.e., in the calendar system).

It is helpful to select an object for the calendar that is only used in that specific activity. For example, a child might use a small plastic cup in snack time, lunch time, while brushing his teeth, and during water play. Using this cup as a symbol for water play may be confusing to the child. Each activity must be represented by an object that is unique to that activity.

Developing the calendar routine

Interacting with the child through his calendar becomes a routine in itself. These are some considerations for developing this "calendar routine:"

  • It is important to highlight the presentation of the object so that the child knows that something is about to happen. You don't want her to think this is just something you are giving her to play with for a while. Using a special shelf or box to hold the object symbols will alert the child.
  • The adult guides the child to pick up the object initially, but fades this prompt over time. This allows the child to take the responsibility for part of the exchange between himself and the adult.
  • Allow the child time to act on the object in whatever way he chooses. This will increase his knowledge of the object and help him relate the object in the calendar to the object when it appears in the activity. This also gives the child an opportunity to initiate an action rather than becoming dependent on prompts.
  • It is important to build in sufficient wait time (at least 5 seconds) for the child to respond to the object. Not all children respond immediately when presented with an object. Take time to observe the child's responses to the object from day to day in order to determine if there is a change in his understanding of the function of the object as a symbol for the activity.
  • Perform a familiar action with the object (e.g., pour with a pitcher, brush teeth with toothbrush, etc.). This may be done coactively if the child needs this support to tune into the object, or you may be able to demonstrate for the child with more vision. This technique will help the student recognize the object because for some kids the object is the action you perform with it. Make sure the action is something the child actually does in the routine.
  • At first, the object is presented to the child very close to the beginning of the activity in time and space. Too much time or travel dilutes the critical association between the object and the event. For this reason you may want to make the object-symbol box portable. Once the child begins to respond to the object outside of the actual event, the time and distance between the object and the activity should be extended. This stretches the child's attending skills and gives him/her more of a "future" concept. This is a prerequisite to moving to a more advanced calendar systems.
  • After completing the activity, the child will drop the object symbol in the "finished" basket. Again he may need coactive support in this step, but fade this level of prompting as soon as possible.

Basically the flow of the calendar routine is this: present the object to the child; perform an action with the object; proceed immediately to the activity; and when the activity is completed; let the child drop the object in the finished basket.

Expanding the anticipation calendar

The time piece can be altered to depict an expanded future and accommodate a pair of objects by dividing it in half. Several symbols can be placed on a shelf. As a rule, the activity on the left is done first since left to right is a common format for calendars.

Increasing distance in time and space between the presentation of the object and the activity can stretch the student's attending abilities, expand his concept of "future", and make the object symbol more representational. For example if you are currently presenting the object in the future basket when he is one foot away from where the activity takes place, does he seem to understand it when you present it at a distance of 3-4 feet away from activity?

DAILY CALENDARS

The child who uses a daily calendar

Most of the time a child will start with an anticipation calendar and then move to the next level which is the daily calendar. However, some children may be able to go directly to a daily calendar system. Looking for evidence of the following traits in the child's interactions will help you make this decision.

  • If the student has been on an anticipation system and has already been exposed to beginning time pieces (e.g finished basket), he demonstrates an understanding of these time pieces. For example, he orients to the future container and fusses when he sees the trampoline symbol because he does not really care for gym. When the teacher moves it to the "finished" container, the fussing stops.
  • The student participates in the calendar routine by taking a turn (picking up the object from the future box and returning it to the finished box).
  • The student attends to his environment and does not withdraw for approximately 3 minutes.
  • The student remembers the activities and objects from familiar events in several daily routines; e.g. searches around the table for food when the spoon is put in his hand.
  • The student can tolerate time and distance between the presentation of the object and the actual activity and still understand the connection between the two. For example, the student can be shown an object and travel a short distance to the activity without completely withdrawing or loosing the thread of what is about to occur.
  • The student anticipates several steps within a few routines (concept of future).
  • The student anticipates an upcoming event from an object cue (concept of future).
  • The student understands when an activity has ended (concept of past).
  • The student is ready to extend the future beyond one or two symbols when he pairs a few events that routinely occur in sequence. For example, he heads toward the playground when lunch is over.

Calendar design

The calendar design has to teach the child that each section represents a piece of time. The divisions between sections must be very clear to the child visually and tactually. The design also has to represent time in a sequence. This activity happens first, this activity happens next, and so on. A variety of materials can be used to make these calendars: coffee cans, a slotted box, plastic baskets hooked together, etc. as long as they represent these two features. Just be sure that they are stable and don't move. The design needs to be sturdy and stable so that the child will not destroy it when he explores the calendar.

As a rule of thumb, the child should be able to easily feel the entire length of the calendar by placing her left hand on one end and her right hand on the other end. Calendars that are too long can be very confusing to the child. The individual sections of the calendar should also be a little larger than the child's hand.

The calendar needs a way to show "past." This can be done either with a "finished" basket or a clothe drape over a section. It can also be helpful to highlight the "present" activity by placing a piece of red tape in front of the current section, marking it tactually, etc. The "future" is represented by the slots to the right of the present activity marker.

As each routine is completed the child will pull a drape over the section of the calendar containing the symbol for that activity or place it in a "finished" basket.

Remember that the calendar needs to be set up in a consistent place so the child can easily locate it. This device is a large part of his communication system and he needs to be able to get to it when he has something to say.

Selecting symbols for the daily calendar

Kids who are using these calendars may be using objects, parts of objects, pictures, tactual symbols, print symbols, or some combination of these forms. These will be presented in conjunction with sign, speech, and/or touch cue depending on their individual communication IEP. For students using signs, and/or speech you will need to tie time vocabulary to the device. For example, when you pull the cloth flap over a completed activity symbol you could sign the word "finished." When you reference the present activity you would use the vocabulary "now." Vocabulary for "future" activities would be "wait" or "later."

Once these signs or words are mastered additional vocabulary can be introduced. It is important to think about the vocabulary you want to introduce and be consistent. For students who sign I would use "past" and "future." For students who are verbal you may consider other standard time concepts such as "yesterday," "Wednesday," etc., but avoid clever terms like "hump day."

Calendar dialogue

Remember,the calendar should improve interactions between you and the child, so don't do all the talking. Build in opportunities for the child to take a turn. Respond to the child's lead by observing what he seems to find interesting or motivating in the symbol. Make comments by acting out motions you make with the object, pointing out characteristics of the object such as texture or shape, or confirming what the child tells you about the object (e.g., "Yes, stir with the spoon").

Designing the calendar routine

Basic Skills for Community Living published by TSBVI offers the following regarding routines:

"The routine for the daily calendar should be done in the same consistent manner each time. An example of a routine might be:

  • Find the symbol
  • Dialogue about the activity
  • Find the materials
  • Travel to the place
  • Complete the activity
  • Put materials away
  • Carry the symbol back to the calendar
  • Discuss the activity that just took place
  • Return the calendar symbol to the calendar or finished box and designate as finished."

(Levack, et al, 1994)

Expanding the calendar

When the student understands the calendar routine, you can begin to expand its use in dialoging with the student. What follows are some strategies you may want to try:

  • Discuss a number of activities at one sitting. Talk about several activities in sequence and introduce the sign for "then" to connect them.
  • Increase the number of slots that are included in the calendar. Remember, don't make it longer than the child's arm span.
  • When setting up the calendar for an extended period of time, give the student choices between two activities and place his choice in a slot.

Calendar systems are incredibly beneficial to children with deafblindness or who are visually and multiply disabled. However, to be effective,they must be matched to the student, designed appropriately, and used effectively. You may contact TSBVI Outreach if you need some help in setting up your calendar or using it correctly with your child or student. We can also be of assistance if your child is ready to use a more advanced calendar system.

References and Resources

Bates, E., Camaioni, L., & Volterra, V. (1975). The acquisition of performatives prior to speech. Merril-Palmer Quarterly, 21, 3, 205-226.

Blaha, R., & Rudin, D. (1981). Teaching time concepts through the use of concrete calendars. Unpublished.

Bloom, L., & Lahey, M. (1978). Language development and language disorders. New York: Wiley and Sons.

Flavel, J. (1985). Cognitive development. Englewood Cliffs, NJ: Prentice-Hall.

Levack, N., Hauser, S., Newton, L. and Stephenson, P. (Eds.) (1994). Basic skills for Community Living: a curriculum for students with visual impairments and multiple disabilities. Austin, TX: Texas School for the Blind and Visually Impaired, 290.

Newman, S. E., & Hall, A. D. (1988). Ease of learning braille and Fishburne alphabets. Journal of Visual Impairment & Blindness, 82, 4, 148-149.

Prelanguage curriculum guide for the multihandicapped. (1979). Colorado springs, CO: Colorado School for the Deaf Blind.

Ratner, N., & Bruner, J. (1977). Games, Social exchanges and the acquisition of language. Journal of Child Language, 5, 391-401.

Rowland, C., & Schweigert, P. (1990). Tangible symbol systems: Symbolic communication for individuals with multisensory impairments. Tuscon, AZ: Communication Skill Builders.

Shafrath, M. R. (1986). An alternative to braille labeling. Journal of Visual Impairment & Blindness, 80, 10, 935-956.

Sopers, M. R. (1971). The deaf-blind child. Institut Voor Doven, Sint Michielsgestel, Holland.

Sternber, L., Battle, C., & Hill, J. (1980). Prelanguage communication programming for the severely and profoundly handicapped. Journal of the Association of the Severely Handicapped, 5, 3, 224-233.

Stillman, R., & Battle, C. (1984). Developing prelanguage communication in the severely handicapped: An interpretation of the van Dijk method. Seminars in Speech and Language, 5, 3, 159-169.

Stillman, R., & Battle, C. (1987). Promoting preverbal communication exchanges. Presentation made at the Second Annual Statewide Deaf-Blind Multiply-Handicapped Conference, Austin, TX.

Writer, J. (1987). A movement-based approach to the education of students who are sensory-impaired multihandicapped. In L. Goetz (ed.) Innovative program design for individuals with dual sensory impairments. Baltimore: Paul Brooke.

van Dijk, J. (1966). The first steps of the deaf-blind child towards language. The Education of the Blind, 112-j115.

van Dijk, J. (1968). The non-verbal child and his world: His outgrowth toward the world of symbols. Verzamelde Studies I Institut Voor Doven, Sint Michielsgestel, Holland.

van Dijk, J. (1986). An educational curriculum for the deaf-blind multihandicapped persons. In D. Ellis (Ed.) Sensory impairments in mentally handicapped people. London: Croom-Helm, Ltd.

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

Elaine Kitchel, M.Ed., Research Scientist

The American Printing House for the Blind

For years it has been known that persons with visual impairments need three times as much light, in general, to do the same task as a person with normal vision.  Some research was done between 1923 and 1965 by the United States Post Office to document that difference.  Since that time many new types of lighting have been developed for private and commercial use. Some of those new developments have fortunate applications for persons with low vision.

First, one ought to know how much light is needed by the visually-impaired individual.  There are a few exceptions but as a general rule, where a 50 watt bulb will do for a person with normal vision, a person with low-vision will need 150 watts.  That rule of thumb can generally be applied to all except persons suffering from retinitis pigmentosa, albinism, achromatopsia and photophobia.

Old research studied light in footcandles.  A footcandle is the amount of light at one foot from a one candela lamp.  This is equal to one lumen/foot of light today.  Light today is spoken about in lumens.  A lumen is the amount of light energy per second radiated from a one candela source and falling on a one foot square area at a distance of one foot from the source. You can probably see why it is easier to talk about light in terms of wattages.

In layman's terms, a person with normal vision can function quite nicely in a 12 x l2 foot room lit by 2, 40-watt fluorescent tubes. It is quite a different story for a person with low vision.  According to the formula, this person would need 6, 40-watt fluorescent tubes to light the same area.  However it is not that easy.  Persons with eye pathology are especially sensitive to the type of light emitted by regular cool-white fluorescent tubes. 

Blue light wavelengths and part of the blue spectrum are focused in front of the retina, while green and yellow are focused on the retina, and some red spectrum is focused behind.  Thus blue light contributes little to visual acuity and visual perception loses sharpness as the blue light component adds significantly to the eye's energy expenditure for focusing, and in reduced can greatly reduce eyestrain without loss of acuity.

There is mounting medical evidence that prolonged exposure to blue light may permanently damage the eyes, contribute to the formation of cataracts and to the destruction of cells in the center of the retina." (Quinn, 1998)

In spite of the problems with blue light, this is the type of tube most commonly found in schools, stores and nearly all public places.  For many persons with low vision, this is problematic. Not only do they need brighter light, they need a different kind of light.  Fortunately special tubes which do not emit the ultraviolet and blue end-spectrum light which is so plentiful in cool white tubes, are available to replace regular cool white fluorescent tubes use by so many businesses and public places. These are called SPX30 (General Electric)  or SP30 (Sylvania and Phillips) tubes.  These can make a significant difference for those persons with low vision by reducing photostress and discomfort.

For persons with low vision then, brightness and type of light are important.  Additionally, the directionality and the diffusion of the light are also important. These can be regulated by dimmers, diffusers and light filters. The peracube, a silver egg-crate type of grid which replaced the acrylic lenses on many fluorescent tubes, has made a positive difference for many persons with visual impairment.

 Much must be taken into account when designing a room or workspace for use by persons who are light sensitive. (Migraine sufferers, persons with multiple sclerosis, lupus and epilepsy often fall into this category as well as persons with ocular conditions.) For example, access to natural light is a consideration. Persons with macular degeneration often benefit from strong natural light, while those with retinitis pigmentosa perform better in a dim environment with the only light falling on the task at hand.

 The color and reflecting qualities of the walls are another important consideration.  Many institutions like to paint walls a glossy white or blue.  But studies show that most persons who are sensitive see their best when they have walls with a non-reflective finish of a warm, pinkish hue. This is because light from the blue end of the spectrum, also called short wavelength light, becomes focused in front of the retina instead of upon it.  This causes the eye to work much harder. 

For persons with normal vision and optimal ocular health, a hard-working eye is not a problem.  But for people whose eyes are already compromised by disease or injury, whenever their eyes are worked hard as they do under the short wavelength blue light, such as that emitted by cool white tubes, the eyes cannot carry away the products of photoreception fast enough to keep up.  This build-up of waste products in the eye is often interpreted by the brain as glare, pain, or light blindness.

Care then, should always be taken, whenever possible, to promote optimum visual performance in the person with low vision, by providing lighting without ultraviolet and blue wavelengths, and a visual environment which has been carefully selected to meet his needs.

References

Creech, L. L., & Mayer, J. A. (1997).  Ultraviolet radiation exposure in children: a review of measurement strategies.  Annals of Behavioral Medicine, 19(4), 399-407.

Fedorovich, I. B., Zak, P. P., & Ostrovskii, M. A. (1994).  Enhanced transmission of UV light by human eye lens in early childhood and age-related yellowing of the lens.  Doklady Biological Sciences, 336(1), 204-206

Gorgels, T. G., & van Norren, D.  (1995).  Ultraviolet and green light cause different types of damage in rat retina.  Investigative ophthalmology & visual science, 36(5), 851-863.

Hall-Lueck, A. (1986, May).  Facts and fads: what works and what doesn't.  Paper presented at the National Forum on Critical Issues in Infant and Preschool  Education of Blind and Visually Impaired Children, American Foundation for the Blind.

Ham, W. T., Jr. (1983).  Ocular hazards of light sources: review of current knowledge.  Journal of Occupational Medicine, 25(2), 101-103.

Ham, W. T., Jr., Ruffolo, J. J., Jr., Mueller, H. A., & Guerry, D., III.  (1980).  The nature of retinal radiation damage: dependence on wavelength, power level and exposure time; the quantitative dimensions of intense light damage as obtained from animal studies, Section II.  Applied Research, 20, 1005-1111.

Kitchel, E., (2000) The effects of blue light on ocular health. Journal of Visual Impairment and Blindness, 94(6) 399-403.

Quinn, N., (1998) Research  into the effects of video display terminals use and office environmental (fluorescent/neon) lighting. The computer filter.

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Jean Robinson, TSBVI VI Outreach Family Support Specialist

Author’s Note: This article is a combination of an article reprinted with permission from “Businessman receives award for motivating others” by David Ball, Reporter with The Orange Leader and from an interview with JoAnn Priddy, mother of Brett Simpson

Abstract:  A young man with deafblindness wins The Christian Knapp Great Motivator award for his success owning and operating his own business. His involvement in his local community began as a high school student and has won him recognition. His mother shares her thoughts about their journey.

Keywords: Family Wisdom, deafblind, disability, employment

Brett Simpson is one impressive individual. What’s so impressive about Mr. Simpson is that he is blind and deaf, yet he goes to work every weekday. He owns and operates Brett’s Place, a snack bar at the main entrance of the Orange County Courthouse in Orange, Texas. In October 2011, during the annual conference for the Deaf-Blind Multihandicapped Association of Texas (DBMAT), he received the "Christian Knapp Great Motivator" award for his work accomplishments. The award is named after a young man whose life was short but very motivating to others.

Brett and his family feel Orange County should share in his joy. The county employees played a big part in Brett achieving this award. He succeeds Burt Hardwick, a blind man who ran the snack stand for 30 years. The business was already set up for a blind person and it was a perfect place for him. He has an amplification device (FM system) that enables him to hear over environmental noise. He also has a wireless receiver in his pocket that vibrates if a customer has trouble getting his attention. The Orange County Commissioners’ Court voted to give the contract to Mr. Simpson and he has been in operation for two years.

JoAnn Priddy, Simpson's mother, said that her son could stay home but he wouldn’t like it. “His favorite part of the job is talking to people. He likes visiting and is very social. No matter what he’s doing, he will always want to help other people. He’s made a lot of friends. It’s like a family here,” she added. “He’s always been independent. He was taught that at an early age,” his mother said. He was involved in several activities growing up including his church youth group, a summer job with Camp Fire Boys and Girls and received the Best Camper award at the Lions’ Camp in Kerrville. And if that wasn’t enough, Simpson also was given the prestigious Courageous Heart honor from the Diocese of Beaumont.  After he graduated from high school in 2006, he attended the Texas School for the Blind and Visually Impaired (TSBVI) in Austin for two years. There, they taught him important skills such as using a tactile grocery list for supplies and reading simple Braille. The school made a video of him working at their snack bar. He also worked in the TSBVI library and at a food bank in Austin.

Mr. Simpson gets up on his own at 5:30 every morning and gets to work by 7:20. His morning routine includes a 30 minute walk on his treadmill. His co-worker, Amanda Dille, gives him a ride to work and he sings in the car the entire time. “I love him,” Dille said. “He’s a nice boss. He lines me out. He’s structured and organized.” You also can find him singing every other Thursday at The Barking Dog Lounge on open mike night. Last week, he sang, “It’s Five O’clock Somewhere.” He sang the same song at the 2011

Lions’ Club convention in Beaumont. Simpson is a member of the Texas Federation of the Blind and attends their monthly chapter meeting in Orange. Priddy said the organization is seeking other blind people to join. He has become active in the Community Christian Church attending activities and services twice a week.

Upon reflecting on the last 25 years, Priddy noted that her biggest frustration was training and re-training vision teachers in her local district. Her son had 3 different vision teachers that were new to the field of blindness. Coordinating teacher training fell on Priddy and she felt that she was starting over each time a new teacher came on board. It took time for a new teacher to understand Brett’s communication and learning style and for them to form a meaningful relationship. One of Priddy’s best experiences was participating in Futures Planning several years ago with Deafblind Outreach Transition Specialist, David Wiley. “It opened my mind up and gave me the chance to dream about all the possibilities. I realized that Brett could do something he loves and have a happy life.”

 Brett Simpson with Melanie and Gary Knapp of DBMAT

Brett Simpson with Melanie and Gary Knapp of DBMAT

Spring 2009 Table of Contents
Versión Español de este artículo (Spanish Version)

By Jamie Pope, Executive Director of AADB and Randy Pope, Private Consultant on Support Service Providers, Silver Springs, MD

Abstract: A couple shared their story at the 2009 Texas Symposium on Deafblindness, showing how people who are deafblind can lead lives of purpose, satisfaction, and joy.

Keywords: Family Wisdom, deafblind, American Association of the Deaf-Blind, AADB, adult life, marriage, Texas Symposium on Deafblindness

image008 Hello! We recently did two presentations on Living the Good Life and A Glimpse into Our Lives as a Deaf-Blind Married Couple at the Texas Symposium, Satisfaction, Joy, and Purpose in the Lives of Students who are Deafblind and the People Who Care, hosted by the Texas Deafblind Project, this past February. We were asked to write this article to share excerpts from our presentations with families who have a family member who is deaf-blind.

Deaf-blind People Can Live Good Lives

To introduce ourselves, we are both deaf-blind. Jamie: I became deaf-blind at age 2½, which was caused by serious illness with high fever. The fever damaged my optic and auditory nerves, which resulted in my low vision and hard of hearing. The fever also caused my balance difficulties. Randy: I have Ushers Syndrome, Type II. Although, I was born hard of hearing, I did not find out I had Ushers until age 35 when I experienced significant vision loss. To this day, I only have central vision, very little peripheral vision, and am hard of hearing.

Living the Good Life Starts with Family-No Surprise!

We have four things in common with our families: love, can-do attitude, involvement, and humor. Our parents love for us came through many times even though communication was not perfect. They have can-do attitudes, believing in us and that we can accomplish many things. They made sure we were involved in family activities, did chores the same as other family members, and have some experience with developmental and age-appropriate tasks and milestones the same as other kids our age. We learned from our families early on that having a good sense of humor is an important social skill, as it makes people happy and contributes to living a good life.

Education is a Stepping Stone to a Good Life.

Jamie: My parents strongly believed that getting a good education was my key to a successful future as a deaf-blind person. During mainstreamed elementary school years, I was very fortunate to have a caring itinerant teacher who went beyond reading, 'riting, and 'rithmetic to teach me about feelings, relationships, friendships, and shortcuts to doing things like counting money faster. This extra help early on was a boost for me in later years.

Randy: My parents are also strong believers in getting a good education for me. In my elementary and junior high school years, I was taught lipreading and speech. Later in high school, I used total communication, which is signing and using speech at the same time. My education evolved around preparing myself for college.

Transition to the Good Life.

Jamie: I had three pivotal experiences during high school that helped me successfully transition to college and beyond. I was an American Red Cross volunteer, and devoted many hours to help students at Michigan School for the Blind with recreation activities. My first job was in my family's farm market where my dad taught me to not to be too shy to address customers and say, hello, how are you, and how may I help you? Also, I learned how to navigate the public transportation system in my hometown at the same time my peers were learning how to drive. Learning the bus system helped to meet my needs for independence at that time and now.

Randy: For my first job, I worked in a pet store taking care of animals, including a monkey. My next job was at McDonald's restaurant as a bun boy. My responsibility was to ensure the buns were toasted and prepared for the meat to be placed on them. I also served as a cook, often cooking 96 meats at one time. These two jobs during my transition period were great learning experiences.

Let the Good Life Begin!

Jamie: My parents encouraged me to go to Gallaudet University even though I got acceptance letters from other universities in Michigan. They believed Gallaudet would provide me with a well-rounded education beyond academics, e.g., fine tune my social skills, and broaden my world. They were right! I graduated with B.A. in Social Work and went on to get a M.S.W. from Catholic University of America.

I had various jobs during college and after graduation. The two most memorable jobs I had were to work as a maid at Yellowstone National Park one summer, and as a tutor of Algebra I to college prep students. I've been a counselor/social worker and technical assistance specialist. Now I am Executive Director of the American Association of the Deaf-Blind (AADB).

Randy: My time in college only lasted one semester; however, I was able to enter into the Tool and Die maker trade, which only employed the highest technical people in this field. This kind of job depends heavily on good vision; I was forced to leave when my vision deteriorated twenty years later. Now I'm working as a volunteer web administrator and public relations specialist for AADB.

The Joy of Family

Randy: I have 7 sons from a previous marriage. Yep, 7 boys! Oh joy! They are now all grown (ages 20 - 34) and doing well. All except two have engineering degrees, or currently are majoring in engineering in college. The other two are working as a computer network administrator and welder. When my vision deteriorated and my ex-wife left the family, I quit work to take care of my boys full-time. There have been difficult times, of course; but my devotion to my sons has paid off, and they are all doing quite well in their own lives right now.

Jamie: Like many little girls, I dreamed of getting married, but interestingly, I never dreamed of becoming a Pope! Randy and I will celebrate our 5th anniversary in May. Randy and I are a team in our marriage. We help each other with mobility, reading, and communication needs. For example, when we enter a self-serve restaurant where the only menu is posted up high, I am not able to see what they have due to my low vision. Randy, on the other hand, can see pretty well straight ahead at a distance, so he reads me the menu. However, he sometimes has difficulty seeing chairs, tables, and people around him; but since I don't have tunnel vision and I can see things close up, I can see enough to guide him to the empty table to sit down and eat. We take the famous quote, opposites attract to a new level in our marriage!

The Good Life Continues

image010Social contact with other deaf-blind friends is important to us. AADB is one place to find deaf-blind friends from all over. AADB is famous for national conferences where hundreds of deaf-blind people come together for networking, support and training with the help of support service providers (SSPs). Check out AADB's website for more info on what we do .

Local and state deaf-blind organizations or groups are also places to socialize with deaf-blind friends. In Texas, there is the Texas Association of the Deaf-Blind. (Contact Kim Powers-Smith at <>)

Helen Keller once said, Life is a daring adventure or nothing. That quote fits our life to a T and we're deaf-blind too! Jamie: I had many adventures, but two stand out: 1) went white water rafting on a wild river; and 2) participated in a Discovery program that had various challenging activities including climbing alone over and through a jumble of wires suspended high up between trees. Randy: Likewise, too many adventures to name here, but my most memorable adventure was when I went body surfing on the Pacific Ocean.

We hope we clearly demonstrated that people who are deaf-blind can lead lives of satisfaction, joy, and purpose!

(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.