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Versión Español de este artículo (Spanish Version)

by Gigi Newton, Teacher Trainer, TSBVI, Texas Deafblind Outreach

Originally published in the Fall 2000 edition of See/Hear

Editor's note: In 1992, Gigi Newton, Teacher Trainer with Texas Deafblind Outreach, began to share information with our team about the benefits of massage therapy with children who are deafblind. During this time, Evelyn Guyer, a certified infant massage therapist, had begun to train individuals in the use of Bonding And Relaxation Therapy (BART) and had received a grant to train parents and others to use these techniques with deafblind children. Gigi wrote an article about some of the work being done by Evelyn and others that was published in the July 1992 edition of P.S. News (the Deafblind Outreach newsletter before SEE/HEAR).

Also in 1992, through Gigi and Stacy Shafer, Early Childhood Specialist with Visually Impaired Outreach, we learned about Active Learning theory from Dr. Lilli Nielsen of Denmark. Active Learning focused on providing the child with blindness opportunities to be an active participant in interactions with the environment. This approach benefits children with visual impairments by assisting in the development of body awareness and motor skills, cognitive skills such as comparing and contrasting qualities (heavy, light, soft, hard, smooth, rough, noisy, quiet, vibrating, still, etc.), and choice-making.

In 1997, I attended a session at the National Deafblind Conference in Washington, D.C. titled "Hands: Tools, Sense Organs, Voice", presented by Barbara Miles. Her session focused on the functions of hands in cognitive, linguistic and emotional development for children with deafblindness. In May of 1999, DB-LINK published Barbara's article, "Talking the Language of Hands to Hands." This article (which is available on the DB-LINK website at http://www.tr.wou.edu/dblink/) looks at the role of hands in early development for children with blindness, deafness, and deafblindness, and suggests strategies for facilitating hand development in children with deafblindness.

For the past several years, the Texas Deafblind Outreach team has been discussing the importance of these theories and approaches in the education of children with deafblindness. Developing the tactual sense, body awareness, the use of hands, and establishing bonds of trust between the child and caregiver or instructor are key components in the child's ability to benefit from instruction. This is especially true when the child is severely visually and auditorially impaired, but is also true to some degree for any child with sensory impairments. Many early literacy and learning skills require the development of the tactual sense, the awareness and use of hands and fingers, the child's willingness to trust an instructor who guides his/her hands to explore objects and people in the environment.

In the summer or early fall of 2001, Texas Deafblind Outreach plans to offer a workshop for parents and members of their children's' educational teams that emphasizes these approaches. Future editions of SEE/HEAR will also feature articles on these topics to help you decide if this workshop might be beneficial for you. Here we are reprinting Gigi's 1992 article about infant massage and the importance of touch in parent-infant bonding. Touch is a powerful way to communicate.

Touch from another human being can be a nourishing medicine or a damaging poison. Without words, we can show affection by giving a hug or by stroking a child's arm, or we can show disapproval by using our hands to restrain a child's hand. The importance of touch for a child with deafblindness is apparent. The child will use this sense extensively to develop communication skills, to help orient in different environments, and most importantly to connect socially with others. This article focuses on the power of gentle touching and suggests ways in which touch can make a positive change in your life and the life of your child.

What does caring and loving touch do for infants? It is a necessary part of developing attachment between the child and parents. It is the beginning of communication between you and your child. Because you make him feel secure, the child learns to trust you and develops an emotional tie to you. The child's response to those feelings of security deepens your feelings of love and protectiveness towards him. It is what Dr. T. Barry Brazelton refers to as the parent and child "falling in love" with each other.

The most important thing parents can do to help develop this attachment is to first become careful observers of their child and learn how to interpret his needs. A newborn communicates his needs or feelings to his parents primarily through crying. When a baby's cry is responded to quickly and warmly, the child begins to develop a bond or attachment to the caregiver.

When a child is not responded to he does not feel safe. As a result his sleeping, eating, and social interactions can all be affected. According to research findings, if a baby knows a caregiver will respond, the baby begins to reserve crying for more specialized needs. This finding disputes the belief that babies are spoiled by parents who respond every time to their child's crying.

Talking to a baby while responding to his cry lets him know that the caregiver understands his feelings. Over time he begins to be comforted by the voice and to understand that words are a way of communicating. This situation changes somewhat with children with deafblindness.

Babies with deafblindness will need to have more input through other senses such as touch, smell, etc. because of the information that is lost to them through their decreased vision and hearing. Try cuddling the child against your chest while you are speaking or holding his hand or foot against your cheek or chest to let him feel the vibrations of your voice. Use a consistent signal, like soft pats on the back or stroking his forehead to communicate your empathy.

The crying behaviors of infants with hearing, vision, and /or neurological problems may be different from an infant without disabilities. It may take more observation to understand what their cry means and how to respond to them. Parents might try to list times when the baby cries and note any patterns in the baby's environment that might be causing him distress. If all the child's basic needs (i.e., food, dry diapers, companionship, etc.) have been met and the child continues to cry, the parent may need to look for signs of over-stimulation. Some of these signs are: turning the body, face or eyes away; closing his eyes; arching the back; spitting up; rapid shallow breathing; changing color; hiccupping.

It the child is over-stimulated you may need to try some inventive approaches to consoling your baby. Preventively, you can try to keep your baby's daily schedule as consistent as possible. You can make the environment calming by dimming the lights, dropping the noise level, and reducing social stimulation. You may also try things like placing him in his travel chair on the washing machine so he is lulled by the vibrations. Taking rides in the car, running a vacuum cleaner, anything that produces a steady vibrating motion or monotonous sound, can also help him to relax or calm. You will have to be creative in finding the type of calming actions that work best for your child.

Moms and dads also bond with their babies by kissing, cuddling, and making eye contact. Babies with vision, hearing, or motor impairments may not receive as much feedback from this type of physical contact because of their impairment. Ask your Vision Teacher to help you decide how your baby uses his vision and how to adjust the lighting in his environment to maximize the use of his vision. For example, the baby might see your face better if the light came from behind him so he does not have to look into a glaring light when he turns to you. To keep from startling a baby who may not hear your voice, a "signature" scent (hand lotion or perfume) may provide a cue that you are near.

Infants with seizure disorders or motor impairments may not respond well to touching and holding. Certain types of touch may actually trigger a seizure in some children with seizure disorders because it is stressful. Some children are tactilely defensive or they have abnormal muscle tone. When a baby does not show a typical response to a parent's attention the parent may interpret the baby's response as rejection. The parents may begin to hold the child less often. However, the child's atypical response to touch may relate to muscle tone rather than to feelings about his parents. With these children, it is critical for the parents to learn to touch their child in a way that is acceptable and pleasurable to the child.

Physical therapists and occupational therapists can help parents discover what types of physical touch their child can tolerate and learn to enjoy. They can also make suggestions about textures (for clothing, bedding, etc.) that may be more pleasing to the child. Parents may want to start with a few minutes of touching, and increase the time gradually as the child can tolerate it. Often children prefer firm pressure on their arms and legs as opposed to light stroking. When using light strokes move in the direction of the hair growth, not against it. Avoid applying pressure on the spine. As the child becomes comfortable with being touched he will become more comfortable touching things and people in his environment. If a child does not enjoy touching, he will have a difficult time learning to explore his surroundings.

In Touching by Montagu we learn that holding and rocking a baby has physiological and emotional benefits. Touching increases the baby's cardiac output, promotes respiration that in turn discourages lung congestion and helps the baby's gastrointestinal function. The movement of rocking often helps in digestion and absorption of food.

During normal home activities such as diapering, bathing and bedtime, incorporate a few minutes of gentle touching. Rubbing on baby lotion, cuddling before bedtime or massaging arms and legs during a bath can add an extra measure of caring to ordinary events. Sometimes these caring touches can even make a bothersome event pleasurable.

One special technique of touching that is being used to increase bonding is infant massage. Infant massage is a more structured way of touching. Many hospitals use infant massage with premature infants. Current studies seem to suggest infant massage may enhance a premature baby's physical growth and development. Infant massage is something you do with your baby as opposed to something that is done to your baby. It is a way for parents to connect with their child on a special level. Massage can help parents learn the way their baby's body looks and feels when he is tensed or relaxed; the look and feel of a gassy stomach; the difference between pain and tension.

Resources and References

If you want information about infant massage training contact: The International Association of Infant Massage Instructors, E. Micki Riddle, R.N., Ph.D., Executive Director, 1891 Goodyear Avenue, Suite 622, Ventura, CA 93008 or phone (805) 644-8524. There is also a website; go to http://www.iaim-us.com/. The following books can be ordered through the website, by calling toll-free (888) 448-9489 or by e-mailing 

  • Baby Massage: Parent-Child Bonding Through Touch, Amelia D. Auckett, Harper Collins, 1989.
  • From the Hand to the Heart (book and video tape), Evelyn Guyer. This is a book for parents and caregivers who care for disabled individuals.
  • Infant Massage: A Handbook for Loving Parents, Vimala Schneider McClure, Bantam Books, 2000.
  • Touching, Montagu, A., Harper Collins, 1986.
  • Another booklet that may be useful to parents is available from the Blind Children's Center, P.O. Box 29159, Los Angeles, CA 90029 or from their website at http://www.blindcntr.org/
  • Move With Me: A Parents' Guide to Movement Development for Visually Impaired Babies, Blind Children's Center (also available in Spanish).

This website features information about Dr. Lilli Nielsen's techniques that emphasize simple ways to change the environment so that a child becomes an "active learner". Active Learning Space is developed collaboratively by Penrickton Center for Blind Children, Perkins School for the Blind and Texas School for the Blind & Visually Impaired.

Click here for redirect to Active Learning Space.

by Stacy Shafer, Reprinted from VISIONS newsletter, Volume 3, No. 2, June 1995

Dr. Lilli Nielsen has worked as special education adviser at Refsnaesskolen, National Institute to Blind and Partially Sighted Children and Youth in Denmark since 1967. She was trained as a preschool teacher and psychologist. She has performed research in the area of spatial relations with infants who are congenitally blind and has written several books and articles about educating children with visual impairments and multiple disabilities. Dr. Nielsen's approach is called Active Learning. She has presented week-long training sessions on developing the full potential of young children with visual impairments and multiple disabilities in countries around the world. We were very fortunate that she presented in Dallas, Texas, May 1994. 1 was asked to write about some of, the information she has shared with us.

All young children learn through play. They need to be encouraged to explore their environment and objects in their environment. Dr. Nielsen believes that all very young children learn by being active, rather than passive recipients of stimulation. We need to observe typical children to see how they learn to move their own bodies (raising their heads, reaching for objects, sitting up, etc.); use their bodies to explore their surroundings (including any and all objects within their surroundings); and actively participate in interactions with other people. A visual impairment prohibits a child from having enough opportunities to develop these abilities and have these experiences without intervention. She encourages the adults to set up the child's environment so that he can do this.

Here are a few of Dr. Nielsen's recommendations when developing the child's environment:

  • Observe the child. It is imperative that we know what the child can do, what activities s/he enjoys, what type of objects does s/he like, etc. Assessing the child's existing skills and preferences is the first step in programming. Observation will help you note the current developmental skills the child has. A child's preferences are indicators of the underlying strengths of his system. These preferences can guide you in the selection of objects and activities. You need to know a child's repertoire so you can notice change and improvement.

  • Provide the child with more activities and objects that are similar to those he enjoys. This will encourage the child to explore and experience new things and broaden his knowledge base. Young children with visual impairments need to be encouraged to explore not only toys from the toy store, but also every day objects around the house.

  • Give the child opportunities to practice and/or to compare. As adults, we are often tempted to remove materials as soon as the child shows that s/he can use them. We all relate new information to things we already know. For example: The first time you successfully drove a car around the block, you still needed lots more experiences driving in different environments, on different types of roads and highways, different vehicles, different times of the day and night, in different types of traffic, with the radio on and off, with friends in the car, etc. before you really mastered all the skills and concepts about driving. When a child begins to bang one object on another one, he needs to be given the opportunity to bang lots of different objects on lots of different surfaces. (The sound produced when banging a metal spoon on the couch is much different than banging it on the coffee table or a metal mixing bowl.) Children need to be able to repeat an action many, many times; in order to learn.

  • Provide a few materials and activities that are at a slightly higher developmental level to provide a challenge for the child, so he doesnt become bored. You only model these activities for the child. You do not expect him to imitate.

  • Do not interrupt a child by talking when s/he is actively engaged in play. Most of us have had the experience of talking to an infant who is busily kicking her legs and having the child stop kicking to listen to our voice. When a child is exploring or playing with an object or practicing a new movement, we need to wait to talk with the child about what he was doing until he turns to us to share his experience, or at least until he takes a little break in the activity. This does not mean that we need to stop talking to our young children with visual impairments, just that we need to pick our moments.

  • Slow down, when interacting with a child. We must be willing to wait and give the child time to take a turn in the interaction. When playing with a child, Dr. Nielsen tells us to give the child time to explore an object alone, rather than jumping in and showing her/him how to use it. At a conference during a child demonstration, Dr. Nielsen offered a battery operated facial brush to a child. She let him explore the brush in his own way. He held the brush against various body parts, moved it from hand to hand, turned it over, put it on a tray, moved it against other objects on the tray, picked it back up, put it to his lips, and did many other things with it. Then he turned to Dr. Nielsen to share the experience. That was the moment she talked with him about the facial brush and the things he had done while playing with it.

  • Let the child have control of her/his own hands. Dr. Nielsen feels it is important when we are interacting with a child who has a visual impairment, that we not take her/his hand and bring it to the materials. Instead, we need to develop alternate strategies for presenting objects to the child (e.g., gently touching the toy to the child's arm or leg to alert her/him of the object's presence, making noise with the object to arouse her/his curiosity to encourage her/him to reach out, placing several objects that are touching the child's body or very close to it so any movements s/he might make will bring her/his body in contact with an object, etc.)

  • Dr. Nielsen has developed several pieces of equipment to provide children with visual impairments the opportunities to actively participate with their environment. One of these "special environments" is the "Little Room". The "Little Room" consists of a metal frame supporting three side panels and a Plexiglas ceiling from which a variety of objects are suspended which the child finds interesting and enjoyable. This gives the child the opportunity to experience the properties of objects, to compare different objects, and try out different things to do with the object on his own without adults interpreting that experience for him. Since the objects are stable, it allows the child to repeat his actions with an object as many times as he needs to, at one to two second intervals, without dropping and losing it. The immediate repetition enables the child to store the information gained from the experiences in his memory.

Dr. Nielsen has given us lots of information about ways to encourage a child with a visual impairment to learn and develop. She will be conducting a week long training in Novi, Michigan June 19-23, 1995. For more information about Dr. Nielsens Active Learning, contact the Consultant for the Visually Impaired at your Education Service Center or call Outreach Services at Texas School for the Blind and Visually Impaired.

References:

Nielsen, Lilli. Environmental intervention for visually impaired preschool children with additional disabilities, VIP Newsletter, Vol. 8, No. 3.
Nielsen, Lilli. The blind childs ability to listen, VIP Newsletter, Vol. 10, No. 3.
Nielsen, Lilli. Active learning, VIP Newsletter, Vol. 10, No. 1.
Nielsen, Lilli. Space and Self, SIKON, 1992.
Nielsen, Lilli. Early Learning Step by Step, SIKON, 1993.
Nielsen, Lilli. Are You Blind?, SIKON, 1990.
Notes taken from lectures given by Dr. Lilli Nielsen at conferences in Albuquerque, New Mexico, September of 1992, in Milwaukee, Wisconsin in October 1993, and Dallas, Texas, in May 1994.

This magnifier unit is designed to pique the interest of the kindergarten-junior high student with low vision, teach concepts which may be incomplete due to the sensory deficit, and provide extended activities in an effort to challenge children and expand the transfer of magnifier skills.  The magnifier(s) recommended for these activities include any combination of a hand held magnifier (preferred), stand magnifier, or microscopic lenses.  The ultimate goal of magnifier use is increase the student’s access to the wide array of visual materials, including objects, pictures, and print.

Fun with Magnifiers is divided into 8 stand-alone units that can be taught by teachers of students with visual impairments, classroom teachers, and/or parents.  Since some children are sensitive to being the only child using a magnifier in their classrooms, these units might be more successful if arranged in a learning center for all classmates to use.  Other alternatives might involve having the student present a completed unit project of his/her choice to the class or to a class of younger students during a science lesson.  Each unit includes optional activities that are designed to provide enrichment and higher order cognitive skills.  Please note that some of the units involve using print books/materials to help classify objects.  The intention of using actual books (rather than a website) is to provide further experience with print size, contrast, color, and photos.  

Download Fun with Magnifiers (Word or PDF)

A Model of Individual Support to Provide Appropriate Access to Education for Students who are Deafblind

Download this document in Word or PDF format

Contents include:

Prepared by Texas Deaf-Blind Outreach, December, 2000

These documents have been designed to help families and school districts in Texas make decisions about using an intervener in the school setting for a student who is deafblind.

Based on original documents created by families, educators, and administrators at a series of Intervener Planning Meetings held in 1993-1994, co-sponsored by Texas Deaf-Blind Outreach and Texas Tech University.

For more information on interveners contact Texas Deaf-Blind Outreach.

Texas Deaf-Blind Outreach
Texas School for the Blind and Visually Impaired
1100 W. 45th Street
Austin, Texas 78756
Phone: (512)206-9103 (Voice)
(512)206-9188 (TTY)
FAX: (512)206-9320
Outreach - deafblind

Texas Deaf-Blind Outreach is located at the Texas School for the Blind and Visually Impaired, and is supported by grant funds from the U.S. Department of Education, Office of Special Education Programs (OSEP), administered through the Texas Education Agency. Opinions expressed herein are those of the authors and do not necessarily represent the position of the U.S. Department of Education. The Texas School for the Blind and Visually Impaired does not discriminate on the basis of race, color, national origin, sex, religion, age, or disability in employment or the provision of services.

What is an Intervener?

In educational settings, an intervener is a staff person who provides individual support to a student who is deafblind. The term "deafblind" refers to a combination of a vision impairment with a hearing impairment that affects the way a student is able to access information and function in the educational environment. Even mild impairments can have a profound effect when combined with another sensory loss. A student with deafblindness is defined by the state for educational purposes in 19 TAC §89.AA, Commissioner's Rules Concerning Special Education Services, §89.1040(c).

There is an array of instructional models regularly used within traditional general and special education settings that may potentially provide the unique instructional support needed for a child with deafblindness. However, when traditional models fail to provide access to appropriate services, another option for the IEP committee is to designate a support staff as an intervener assigned to the child.

An intervener is a paraprofessional with specialized skills and training who is designated to provide direct support to a student with deafblindness for all or part of the instructional day. The intervener supports the existing service delivery model in implementing the student's IEP. The decision to use an intervener is based on the level of support a student currently needs to effectively participate in his or her instructional environment. Additionally, if a student with deafblindness requires extensive and novel modifications to the existing educational model, the services of an intervener can be used to simplify the process for the other members of the educational team.

Though the use of interveners for students with deafblindness is relatively new in Texas, the effectiveness of the model has been validated through widespread use for many years in Canada, and more recently in Utah and several other states. On its web site, the Canadian Deafblind Rubella Association defines this kind of intervention as "the process that allows individuals who are deafblind to receive visual and auditory information that they are unable to gather on their own in a way meaningful to them such that they can interact with the environment and thus be enabled to establish and maintain maximum control over their lives."

In an article on Utah's program to provide interveners in schools, the following basic definition of an intervener is given. "An Intervener is specially trained to provide clear and consistent sensory information to an individual who is deafblind, compensating for both vision and hearing loss in such a way as to facilitate and enhance learning and interaction with the physical environment and with society. An intervener acts as the eyes and ears of the individual who is deaf-blind, making him or her aware of what is occurring and attaching language and meaning to all experiences. An intervener intercedes between the individual who is deafblind and the environment in such a way so as to minimize the affects of multisensory deprivation, and to empower the individual to have control over his or her life." (Henderson & Killoran, 1995.)

Understanding what an intervener is, and why this support model has evolved and is becoming more widely used, begins with understanding the needs of children and youth who are deafblind. Deafblindness, or the combination of visual impairment with hearing impairment, often presents unique challenges to educators and others working with a child. The role of the intervener is to join with the entire educational team to meet those challenges by providing individual support for the child.

(Paddi Henderson & John Killoran, "Utah Enhances Services for Children who are Deaf-Blind," Deaf-Blind Perspectives, Fall, 1995)

In summary, an intervener is defined as follows:

  • An intervener is one of an array of strategies and services which can be used to effectively meet the educational needs of a student who is deafblind;
  • An intervener is a paraprofessional with specialized skills and training in communication and other issues related to deafblindness, who works as an essential member of the student's educational team;
  • An intervener works individually with a student who is deafblind within any educational setting as determined by the IEP;
  • An intervener provides access to information, environments, and materials the student might otherwise be unable to access or understand due to sensory impairments;
  • An intervener communicates with a deafblind student using methods and strategies that are effective for the individual student;
  • An intervener guides the student through activities and hands-on exploration of materials as appropriate based on individual learning styles;
  • An intervener provides modifications to lessons as needed by the child and specified in the IEP.

The Unique Educational Needs of Children With Deafblindness

Individuals with deafblindness have unique life-long needs for support that must be addressed in order for them to function in a world driven by sight and sound. Consistent with this, they have unique needs within the educational system. The information that follows outlines some of these needs as well as services which impact quality education for students with deafblindness.

Around 700 school-aged children from throughout Texas were identified on the 1999 Texas Deafblind Census. Due to the low incidence of this disability, these students are generally unique among the population of students with developmental disabilities within a given community. Most districts understandably build programs and hire staff targeting the majority of children with disabilities in their particular area, without planning programs for students with unusual needs.

Assessment

From the beginning, the school system often finds its resources in deafblindness to be inadequate. Assessing the skills of these children can be difficult since assessment instruments are generally not normed for this population. It is often impossible to adapt these materials to test children with deafblindness without negating the test's validity.

Another problem in assessing skills and providing instruction to children with deafblindness is the difficulty in engaging them and drawing them outside of themselves. The need to feel safe in a world that alternately "comes at you" or "disappears in thin air" often sends these children inside themselves. They may be unresponsive during testing unless they are working with someone with whom they have bonded.

Unique Instructional Strategies

Instruction for students with visual impairments usually relies heavily on information received through the auditory channel. For example, a child with visual impairments learns to use sounds to supplement whatever visual information is present in order to identify places and things and move from place to place. However, a child who is also deaf can not use this technique to compensate for vision problems. For this reason, the ability to identify things, or even to be aware of things that are beyond arm's reach, is greatly reduced.

Similarly, instruction for a child who is deaf or hard of hearing relies heavily on the use of vision. For example, language development and instruction for students who are deaf or hard of hearing can involve sign, fingerspelling, speechreading, or spoken language. Accessing and understanding instruction depends on the ability to clearly see the hands and faces of other signers or the lips of other speakers. Even a child with a mild visual loss faces difficulty in trying to gather complete information.

Because instructional strategies for students who are blind or deaf are in many cases based on supplementing one sense with the other, those strategies are often ineffective for students who are deafblind. Working with a student who is deafblind requires the use of strategies that are different from the strategies used with students who are either blind or deaf, not simply a combination of those strategies.

Travel and Exploration of the Environment

Children with deaf-blindness have difficulty learning through observation or independent exploration. As a result, they are likely to have an experiential and conceptual base that differs significantly from typical children, or children with other disabilities.

A student's ability to become oriented within an environment and to travel through it independently is deeply affected by deafblindness. For example, a student with the single disability of a vision impairment is taught to use hearing to determine where he is or orient to the area he is approaching. Auditory techniques may not necessarily be safe or effective if a child has even a mild hearing loss. Alternate strategies for teaching a child to use different environmental cues are needed for students with dual sensory impairments.

Without enticement from sights and sounds, a child with deafblindness may also be less likely to explore and interact with the world. This has great impact on cognitive and social development, as well as language.

Adaptive and Assistive Devices

Children with deafblindness use a variety of adaptive/assistive devices. Knowing how to use and keep this equipment in working order is no small accomplishment. For example, a child may use one or all from a list of devices including a hearing aid, an FM auditory trainer, glasses, a monocular, and a cane. Students may use a vibrating alarm clock or braille watch. Communication devices range from a low-tech picture book to a high-tech braille notetaker or computer. The child and staff must all be trained to use these devices.

Access to Information

When the eyes and ears distort or omit incoming information altogether, a child may only perceive and comprehend fragments of any situation or experience. Children with deafblindness have difficulty learning through observation or independent exploration. As a result, they are likely to have an experiential and conceptual base that differs significantly from typical children, or children with other disabilities. Students who are deafblind must be supported in filling the information gaps that continuously result from sensory losses. They require additional time with carefully engineered "hands on" activities to access information that other children pick up incidentally from other people, objects, and the environment.

Communication

Communication is one of the main areas which is critically affected by deafblindness, and is usually the highest priority in their educational programming. These children's communication systems typically contain a variety of forms which can include signals, tactile sign language, object symbols, tactile symbol systems, Braille, and many others. Each child's system must be individually designed and used with a high degree of consistency across the day. The development of good communication strategies and systems for students with deafblindness frequently requires training for those working with the child since few have preparation for or experience with this population.

Each child's [communication] system must be individually designed for him and used with a high degree of consistency across the day.

Behavior

To address the underlying cause of these behaviors, one must have an under-standing of the ongoing effects of sensory deprivation and an ability to modify the child's instruction to offset these effects while building additional skills.

Frequent stress and frustration that may be experienced by children due to the effects of deafblindness can result in behavior that becomes either withdrawn and passive or volatile and potentially combative. Additionally, abusive or disruptive behavior may serve as the only effective communication strategy for a child who does not know more acceptable ways to communicate. To address the underlying cause of these behaviors, one must have an understanding of the ongoing effects of sensory deprivation and an ability to modify the child's instruction to offset these effects while building additional skills.

Additional Disabilities

Many children have other disabilities along with deafblindness, so consideration must be given to different or additional needs and strategies for support. For example, a combination of factors may cause children to dislike being touched, limiting their ability to gather information tactually. Some medication can affect vision and hearing. Ongoing medical problems may make vision or hearing loss progressively worse.

Consistency and Routine

Children with deafblindness learn best when information is presented in a consistent fashion from person to person, place to place, and over time. Using consistent activity routines with many opportunities for practice and repetition is essential. This places some additional burdens on the staff, who must work together closely in order to provide consistency and coordinate support. Planning time as a group is critical. Additionally, information and input from the family is vital to a well-coordinated program.

Roles in the Educational Team

Typically, staff who may serve a child with deafblindness include: teacher of the visually impaired; teacher of the hearing impaired; orientation and mobility instructor; intervener; classroom teacher (general education and special education) and instructional aide; behavior specialist; diagnostician; and often occupational and physical therapists as well as other related service staff such as a speech/ language therapist and audiologist. Often finding adequate time for the staff and the family to meet together, share information, and plan is quite difficult. This may result in communication breakdowns, not only between the staff and family, but also between the various staff members. To further complicate a difficult situation, each year new staff may become involved with the child.

Children with deafblindness learn best when information is presented in a consistent fashion from person to person, place to place, and over time.

Professional Expertise

Most educational staff have had few if any prior opportunities for specific training in the area of deafblindness. It is rare to have a teacher certified or explicitly trained in deafblindness within a local school district. There is no recognized certification or endorsement through the Texas Education Agency in the area of deafblindness. There is only one university program in Texas offering course work specific to the area of deafblindness. Furthermore, because there are few jobs specifically in the area of deafblindness, the state's ability to utilize these graduates as well as recruit trained individuals from other states is greatly reduced.

Often districts can not meet the unique learning needs of a child with deafblindness without additional training to make appropriate program modifications. In order to design and provide the necessary modifications and supports, most school districts look to outside consultants on deafblindness to provide training to their staff through an inservice model. Districts may utilize assistance from the Regional Deaf-Blind Specialists located at each of the Education Service Centers, or Texas Deaf-Blind Outreach at the Texas School for the Blind and Visually Impaired in Austin. Texas Deaf-Blind Outreach is a training project funded by the Texas Education Agency through a Federal IDEA grant on deafblindness.

Conclusion

Although children with deafblindness present unique challenges to those who are charged with providing them appropriate education, it is important to state that these children can learn. If these children and the educators working with them are given the proper supports, they can make terrific strides. Using appropriate strategies and proven models of support can enable a student who is deafblind to make the most of educational opportunities and be prepared for an enjoyable and productive life.

How Interveners Differ From Other Typical Support Staff

Different job titles are used to describe staff members who support students receiving special education services. The "intervener" is a title exclusively used for a paraprofessional who specifically supports a student with deafblindness. Due to the unique nature of support needed by a child who is deafblind, the responsibilities, expectations, schedule, and training of an intervener differ from what is more commonly seen in other special education staff assignments.

Contrasting an intervener with an instructional aide

  1. The intervener is trained in communication and support strategies unique to students with deafblindness.
  2. Because the intervener must have specialized knowledge and skills to implement the IEP of an individual student who is deafblind, the intervener must be released from duties to participate in training related to deafblindness. This may encompass training provided on-site, and workshops held off-campus, as well as out of town.
  3. The intervener's primary responsibility is to implement the child's IEP by providing access to information, materials, and environments. The intervener may not be pulled to perform other duties (lunchroom or bus duty, substituting for other aides or teachers who are absent, etc.) if it interferes with implementing the IEP.
  4. Because the intervener receives training to perform specialized tasks, and students who are deafblind have difficulty trusting and understanding new people, the intervener must not be considered interchangeable with other paraprofessionals when making duty assignments. One intervener consistently works with a student across different settings, and over a long period of time.
  5. The intervener is present and participates in all staffings and IEP meetings related to the child with deafblindness. This may involve preparing reports, as well as participating in discussions when the team formulates and evaluates programming.
  6. The intervener needs scheduled preparation time which may be used for: observation of general education classes to prepare for the inclusion of the student; making or purchasing adaptive materials; lesson planning; reviewing and recording data; preparing reports; reviewing training materials; or meeting with related service staff and IEP team members.

Contrasting an intervener with a sign language interpreter

  1. A child with deafblindness may or not need the services of a certified interpreter, based on factors such as language ability, instructional arrangement, and IEP goals. For example, a student who uses sign fluently in an academic program requires an interpreter, while a student whose use of sign is emerging is served appropriately with a staff member proficient in sign, but not necessarily certified. Some students with deafblindness use communication forms other than sign altogether, such as speech or tactile symbols. 
    Please note: In cases when a certified interpreter is required, the student's needs related to deafblindness may require the use of skills and strategies in addition to those of a typical interpreter in order for the child's IEP to be fully implemented. In these cases, an interpreter with additional training, skills, roles, and responsibilities is acting as an intervener.
  2. Rather than relying on one uniform communication form or language, such as sign, an intervener must know the individual student's unique communication system. Students who are deafblind may use sign, tactile sign, speech, braille, picture symbols, tactile symbols, objects, gestures, signals, or some combination of these and other communication forms. The intervener must be well versed in the student's individual forms of communicating both receptively and expressively.
  3. When a student who is deafblind uses sign language, it may be modified from sign typically used for students who are deaf or hard of hearing. Signs may need to be presented within a few feet from the student in order to remain within the his or her visual range. The signs used may need to be reduced so they can be entirely seen within a very narrow visual field. The student may need to receive sign tactually. Signs may need to be paired with other communication forms for clarity. Making these modifications may be unfamiliar to a typical interpreter.
  4. A student with deafblindness may miss a significant amount of environmental information in addition to what is being said by others. For this reason, the intervener does much more than interpret what is being said. The intervener supplies additional information about what is happening around the student.
  5. Because a student who is deafblind misses significant environmental information, he or she may not have as complete a conceptual understanding of topics being discussed as someone who has complete use of one or both distance senses. Consequently, the intervener supplies conceptual background information to supplement what is being said in class.
  6. An intervener must be familiar with basic orientation and mobility strategies such as sighted guide, and take responsibility for assisting the student in moving from place to place when necessary.
  7. Students who are deafblind have difficulty trusting and understanding new people, so interveners are not interchangeable. One intervener consistently works with a student across different settings, and over a long period of time.
  8. The intervener is present and participates in all staffings and IEP meetings related to the child with deafblindness. This may involve preparing reports, as well as participating in discussions to formulate and evaluate programming with the team. Interpreters do not typically have this role.
  9. In contrast to a typical interpreter, the intervener needs preparatory time which may be used in the following ways: observation of general education classes to prepare for the inclusion of the student; making or purchasing materials; lesson planning, reviewing and recording data; telephone follow-up related to the student's needs; preparing reports; reviewing training materials; or meeting with related service staff and IEP team members.

Who Should Have an Intervener?

The foundation of appropriate educational support for a student with deafblindness is a strong IEP that addresses unique needs related to deafblindness and outlines necessary instructional modifications. The question of using an intervener should be addressed by examining the student's progress with the IEP and the ability of available personnel to supply appropriate modifications within any potential instructional arrangements being considered.

The nature of supports and modifications necessary for an individual student with deafblindness to benefit from instruction are based on two things:

  1. the needs of the individual child; and
  2. the potential for the child to access instruction within available educational settings and instructional models.

An intervener is a staff person designated to provide direct support to a student with deafblindness for all or part of the instructional day. The intervener supports the existing service delivery model in implementing the student's IEP. The decision to use an intervener is based on the level of support a student currently needs to effectively participate in his or her instructional environment. Additionally, if a student with deafblindness requires extensive and novel modifications to the existing educational model, the services of an intervener can be used to simplify the process for the other members of the educational team.

The question of an intervener should only be addressed after the child is assessed, the IEP is developed, and the available service delivery options are reviewed.

The following considerations will assist school districts and families in deciding the level of instructional support that would be most helpful in the child's learning process.

Variables in deciding appropriate level of support with regard to individual student needs:

  1. Social/emotional needs of the child. Example: Some children with deafblindness have extreme difficulties in relating to or responding to people in general. They may become accustomed to isolation when reduced sensory information separates them from others. In such cases, a child may turn inward and withdraw from human contact, or in some cases become combative when another person approaches. Some seem to recognize a few, but not most of the people who interact with them. Sometimes limiting the number of staff who work with the child is helpful. Giving a child the opportunity to build a strong relationship with one person can provide a base for gradually accepting others.
  2. Degree and complexity of sensory loss. Example:If a child is completely without sight and has a hearing loss that causes great distortion of sound, he or she relies heavily on the sense of touch to gain information. In this situation, a person to carefully guide the student through hands-on experience with new activities is frequently needed.
  3. Student's overall instructional profile. Example: Can the student learn in a group none/some/all ofthe time? Does the child require a high degree of consistency in learning that prohibits numerous people working with the student on the same task? Does the student need to become comfortable with a particular task or lesson taught by one person, before others can begin to provide support on the same lessons?

Variables in deciding the need for additional support with regard to educational settings and resources:

  1. Existing special education services are appropriate for the other children with disabilities on the campus, but not a good match for the one child with deaf-blindness in the district. Example: The child with deafblindness is in a classroom with one teacher and ten teenagers who read on a 5th grade level, can learn in a large group, and go alone to some general education classes. The teacher feels that she cannot serve the child with deafblindness without additional staff.
  2. The programming recommended by the IEP committee places such demands on the staff for inservice training and material adaptation/preparation, that the IEP is at risk for not being implemented. Example: The child is served by eight people who are unfamiliar with van Dijk methodology, calendar systems and adaptive listening devices, all of which play a large role in her programming. The amount of inservice it would take to build adequate skills across the group is prohibitive in light of their other duties. The calendar system will take hours to develop and no one has time or is really sure how to start.

Suggested Job Description

Position: Intervener for Student with Deafblindness

An intervener is a staff position designated to provide direct support to a student with deafblindness for all or part of the instructional day as determined by the student's Individual Educational Plan (IEP). The decision to designate an intervener is based on the level of support needed by a student to participate effectively in his/her instructional environment(s) as described by the IEP. The intervener works cooperatively with parents and a variety of direct service providers and consultants including: classroom teachers; teachers of children with hearing impairments, visual impairments, or severe disabilities; speech therapists; occupational and physical therapists; orientation and mobility instructors; and other professionals as well as paraprofessionals.

Rationale: A child who is deafblind needs to have the opportunity to develop a personal relationship with a person who will consistently be available to interpret the world for the child. The child must have continual access to a person who communicates effectively so that the individual can develop a sense of trust and security that will enable the child to learn. Many students with deafblindness require extensive and novel modifications to an existing educational model. The services of an intervener can be used to individualize the process. An intervener serves as a bridge to the world for a child who has deafblindness.

Qualifications: Experience with and/or desire to work with students with sensory impairments. Must be willing to participate in ongoing training in the area of deafblindness.

Reports to: Appropriate administrative staff

Supervises: None

Responsibilities: The intervener assists a student with deafblindness to actively participate in activities and provides a supportive and effective environment in which the student can learn. The intervener provides this service within the guidelines of the school, as set forth in its policies and procedures. The intervener works under the direction and supervision of the classroom teacher, and participates as a full educational team member in developing and implementing the student's IEP.

Specific Duties Include: The Intervener's specific duties will be individualized according to the needs of the child and the profile of the current educational placement. Typically, duties may include:

  • Has the primary responsibility to provide direct support to a student with deafblindness during all or part of a school day as part of an educational team, and as indicated in the student's IEP;
  • Follows the student's IEP and the modifications and instructional techniques recommended by related service staff;
  • Become proficient in students' individual communication methods and strategies;
  • Creates instructional materials as needed;
  • Accompanies and supports the student during community-based instruction;
  • Visits or provides instruction in the student's home as deemed appropriate by the IEP committee;
  • Maintains communication between home and school, and keeps a daily log of information about the student and his or her activities;
  • Participates in IEP meetings and student staffings;
  • Participates in the assessment of the student and in the preparation of IEPs, progress reports, behavior plans, data collection, and other documentation for program monitoring;
  • Participates in site-based, regional, and statewide training in the area of deafblindness;
  • Works to attain proficiency in all items listed on the "Intervener Portfolio Summary" self-assessment;
  • Serves as a resource to other staff on issues related to deafblindness.

Work Attitudes:

  • Feels comfortable working in close physical proximity to students while frequently using touch to communicate with and instruct students who are primarily tactile learners;
  • Demonstrates emotional maturity, stability, ability to perform under stress, and frustration tolerance;
  • Shows ability to exercise good judgment, cooperation, tact, and discretion in dealing with the student, family, and others;
  • Shows interest in developing additional knowledge and skills;
  • Follows team decisions, established policies and procedures, and designated lines of communication and authority.

Important Issues for Schools Using an Intervener

Roles of the educational team

  1. Because the intervener should receive special training on issues related to the education of a student with deafblindness, he or she becomes a valuable member of the educational team. Through the course of close daily contact with the student, the intervener also becomes an expert on communication and support for the individual student. For this reason, professionals from certain disciplines may want to seek information from as well as collaborate with the intervener in some situations. At first, these professionals may be unfamiliar or uncomfortable with this role while working with a paraprofessional. All members of the team should learn about interveners and plan how to best make use of the intervener's unique qualifications and position.
  2. The intervener will be working as part of a transdisciplinary team, which will be needed to plan an appropriate program for a student with dual sensory impairments. This team might include the intervener, the student and family, general and/or special education teachers, consulting/related service staff, general education administrators, special education supervisor, etc.
  3. This team should include professionals such as a teacher of the visually impaired, orientation and mobility specialist, and deaf educator, as well as therapists based on any additional disabilities or needs.
  4. The intervener is a critical part of the team, and should be included in team planning. Since the intervener usually is the consistent person across educational environments, he or she is in a unique position to both provide and disseminate information about the student. The intervener will be responsible for carrying out recommendations made by consulting professionals, and making continuous adaptations to lessons throughout the day. For this reason, the intervener must meet directly with team members on a regular basis.

Support and Supervision

  1. A decision must be made about who will be the intervener's direct supervisor. This may not be obvious if the student changes classrooms or settings during the day. Possible supervisors might include the classroom teacher, resource teacher, special education coordinator, counselor, etc. Lack of a clear chain of supervision can make the intervener feel powerless and unsupported.
  2. The intervener will need on-going support in implementing modifications, obtaining adaptive aids, coordinating with the educational team, interpreting recommendations from consulting staff, brainstorming activities and strategies, finding training opportunities, and many other situations throughout the school year. This would also include emotional support during difficult or frustrating periods. This support could come from a variety of sources, but because the intervener is often isolated, he or she should know where to go when in need of any of these kinds of support.
  3. The position of intervener may be unique on a campus or in a district. This intensifies the feeling of isolation. For that reason, it is helpful if the intervener has the opportunity to be in contact with other paraprofessionals serving in this role at other locations. Texas Deaf-Blind Outreach at Texas School for the Blind and Visually Impaired offers annual meetings or workshops with strands designed for interveners.

Training

  1. The intervener will need specialized skills and knowledge in order to effectively do his or her job. "Intervener Portfolio Summary ", a document developed to plan training in Texas, can provide guidance in assessing an intervener's skills and training needs. The skills needed center around communication forms used by the student and providing meaningful access to information from the environment.
  2. Training can be provided through a variety of sources, and in a variety of formats. Each regional Education Service Center has designated Deaf-Blind Specialist. This person should be able to inform the district of upcoming training opportunities. Workshops and consultation may be available locally. Other workshops sponsored by Texas Deaf-Blind Outreach may be available on a regional or statewide basis. Some training materials are available in print or video.
  3. The district should expect to set aside some funds to provide access to training for the intervener. Some financial assistance is available from Texas Deaf-Blind Outreach to facilitate training an intervener working with a student listed on the Texas Deafblind Census.

Intervener Certification

  1. In Canada there are university training programs providing coursework leading to certification for interveners. No formal system of certification currently exists in the USA. However, several states are taking steps toward formalizing intervener preparation. College credit courses for interveners are offered or planned in Minnesota and Utah. Ski*Hi Institute in Utah has produced an extensive intervener training manual and has mandatory attendance at monthly intervener training courses funded by the state.
  2. Plans have been made to allow interveners in Texas to access coursework from other states through distance education. Colleges in Texas may in the future offer classes such as these. In the future it may be possible for districts to locate skilled individuals certified to be interveners for students with deafblindness. Until that time, Texas Deaf-Blind Outreach, the regional Education Service Centers, and school districts must work together to provide numerous in-service opportunities to ensure that interveners have the skills needed to work effectively with students who are deafblind.

The Intervener's Schedule

  1. The intervener's schedule is based on the needs of the student. An intervener should be available to the student whenever necessary to insure that the IEP is implemented and the student has access to the information present in the environment. This may be for all or part of the school day as decided by the IEP committee, based on the nature of the educational settings and activities called for in the IEP.
  2. The intervener's work schedule should include time for planning as often as necessary. For example, the intervener needs time to gather and assemble modified materials. Additionally, time may be spent meeting with other members of the educational team, accompanying team members on home visits, and recording data for the team's review.

Broadening the Student's Social and Support Circle

  1. Unlike traditional models in which staff make efforts to fade, giving way to natural support in the classroom and other school environments, in many situations it may be inappropriate for the intervener to fade. The intervener is the communication link between the student and others in the environment. When others are unfamiliar with the student's language or other communication forms, the intervener must be close at hand to interpret.
  2. Because it is necessary for the intervener to be so closely involved in interactions, there is danger that the intervener will become a barrier to social exploration for the student. The intervener must be aware that his or her role is to facilitate interaction by acting as a bridge between the student and others, rather than insulating the student from peers, other professionals, and community members.
  3. The intervener should attempt to expand the student's allies among other professionals by providing information about deafblindness and facilitating communication.

Financial Considerations

  1. Because an intervener may be a necessary support for students who are deafblind, school districts should consider the number of students identified on the deafblind census when planning budgets.
  2. Interveners require specialized skills and training to be effective. Consistency, or lack of employee turnover, is also a concern since students who are deafblind have issues with trust and unique learning styles. For this reason, districts should consider a salary step that will aid recruitment and retention of quality interveners.
  3. Interveners have a unique role with a low incidence student population. Training needed may not be available locally. Districts should be prepared to budget or seek funds for on-going training opportunities for the intervener. One source of financial assistance for intervener training is Texas Deaf-Blind Outreach
  4. Interveners frequently need supplies to make materials for curricular adaptations so the student can have access to instruction. These may be common items (such as velcro strips for making tactile symbols), or more unusual items (such as a potted plant for a student to explore tactually while the rest of the class learns through pictures and lecture.) The intervener should have access to a supply budget to provide these adaptive materials.

Substitutes

  1. Students who are deafblind need consistency in order to trust, understand, and communicate effectively with a person providing support. For this reason, interveners should not be reassigned or pulled for alternate duty without good cause.
  2. However, the role of the intervener requires him or her to be away from regular duties from time to time. For example, interveners need to attend IEP planning meetings and training.
  3. For times that the intervener must be away from the student, an appropriate back-up plan must be in place. Someone else in the school, or a readily available substitute, should receive training in the student's communication style and support needs. The alternate(s) should be trained and introduced to the child by the intervener, especially when trust and bonding is an issue.

Administrative Checklist

When Assigning an Intervener

Student: ______________________________

Intervener: ____________________________

The following considerations should be addressed before the intervener begins working with the student.

____ 1. The intervener's skills have been assessed, and an individual training plan developed for the intervener. (See "Intervener Portfolio Summary.")

____ 2. The chain of supervision is clear, and all members of the student's educational team are aware of their own roles, and the role of the intervener.

____ 3. The intervener knows where to go for all kinds of support and assistance when needed.

____ 4. The intervener has a schedule which accommodates the student's needs, and provides the intervener with time to plan and meet with other team members as often as necessary.

____ 5. The intervener has access to funds for needed instructional materials.

____ 6. There is a procedure for the intervener to gather and share information with other people and broaden the child's base of support.

____ 7. The intervener is familiar with procedures to collect data and demonstrate the child's progress.

____ 8. Adequate back-ups have been identified, oriented, and made available for times the intervener is not present.

Bibliography of Additional Materials on Interveners

Alsop, L. (Ed.). (in press). Understanding Deafblindness: Issues, Perspectives, and Strategies. Logan, UT: Ski-Hi Institute.

This two volume manual is a comprehensive training resource designed interveners and families of children with deafblindness. Among the twenty-four units on topics related to deafblindness, "The Intervener" covers training needs, responsibilities, attitudes, and effective strategies for working with children.

Alsop, L., Blaha, R., & Kloos, E. (2000). The Intervener in Early Intervention and Educational Settings for Children and Youth With Deafblindness. Monmouth, OR: NTAC.

This NTAC Briefing Paper was developed and reviewed by people from throughout the country, and provides the first national statement on the use of interveners in schools and early intervention settings. Available online  through DB-LINK at 1-800-438-9376.

Deafblindness and the Intervener (1998) Logan, UT: Utah State University.

This videotape shows interveners working with students who are deafblind, and has interviews with parents, educators, administrators, and interveners. Available from Hope Publishing, Incorporated; (435)752-9533; www.hopepubl.com/.

Henderson, P. & Killoran, J. (1995). Utah Enhances Services for Children Who Are Deaf-Blind. Deaf-Blind Perspectives, 3(1), 3-6.

This article focuses on the needs of students with deafblindness, and advocacy leading to legislation providing funds for intervener services in Utah.

Watkins, S., Clark, T., Strong, C., & Barringer, D. (1994). Effectiveness of an Intervener Model of Services for Young Deaf-Blind Children American Annals of the Deaf, 139(4), 404-409.

In this study, interveners were shown to help children develop interactive behaviors instead of isolated, defensive, or self-stimulatory behaviors. Quantitative and qualitative data support the effectiveness of intervener services for young children who are deaf-blind.

You and Me: A Five Part Video Series About Educating Children Who Are Deaf-Blind. (1995). Monmouth, OR: Teaching Research.

Though this video uses the term "interpreter-tutor", the function of the support model used is parallel to an intervener. The video shows an intervener working with a student who is deafblind in an inclusive setting.

 


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Download the ECC Flyer (pdf 228kb)

The term expanded core curriculum (ECC) is used to define concepts and skills that often require specialized instruction with students who are blind or visually impaired in order to compensate for decreased opportunities to learn incidentally by observing others. In addition to the general education core curriculum that all students are taught, students with visual impairments, starting at birth, also need instruction in the ECC. The ECC areas include (A) needs that result from the visual impairment that enable the student "to be involved in and make progress in the general education curriculum; and (B) other educational needs that result from the child's disability" as required by IDEA (34 CFR 300.320 (a)(2)(A)(B)). Texas Education Code (TEC) 30.002(c)(5) and (e)(5) require the flexibility of school districts to make arrangements for services to occur "beyond regular school hours to ensure the student learns the skills and receives the instruction" in the ECC.

With the passage of Senate Bill 39 in 2013 (Texas 83rd Legislative Session), evaluation in all areas of the ECC is required for students with visual impairments. Priority needs must be identified by the IEP team and instruction provided in these areas.

Nine Areas of the ECC

Assistive Technology

Assistive technology is an umbrella term that includes assistive and adaptive tools as well as instructional services that can enhance communication, access, and learning. It can include electronic equipment such as switches, mobile devices, and portable notetakers; computer access such as magnification software, screen readers, and keyboarding; and low-tech devices such as an abacus, a brailler, Active Learning materials (e.g., Little Room®), and optical devices.

Career Education

Career education will provide students with visual impairments of all ages the opportunity to learn through hands-on experiences about jobs that they may not otherwise be aware of without the ability to observe people working. They also learn work-related skills such as assuming responsibility, punctuality, and staying on task. Career education provides opportunities for students to explore and discover strengths and interests and plan for transition to adult life.

Compensatory Skills

Compensatory skills include skills necessary for accessing the core curriculum including concept development; communication modes; organization and study skills; access to print materials; and the use of braille/Nemeth, tactile graphics, object and/or tactile symbols, sign language, and audio materials.

Independent Living Skills

Independent living skills include the tasks and functions people perform in daily life to increase their independence and contribute to the family structure. These skills include personal hygiene, eating skills, food preparation, time and money management, clothing care, and household tasks. People with vision typically learn such daily routines through observation, whereas individuals with visual impairments often need systematic instruction and frequent practice in these daily tasks.

Orientation and Mobility (O&M)

O&M instruction enables students of all ages and motor abilities to be oriented to their surroundings and to move as independently and safely as possible. Students learn about themselves and their environments, including home, school, and community. O&M lessons incorporate skills ranging from basic body image, spatial relationships, and purposeful movement to cane usage, travel in the community, and use of public transportation. Having O&M skills enables students to acquire independence to the greatest extent possible, based on their individual needs and abilities.

Recreation and Leisure

Being unable to observe others reduces awareness of recreation and leisure options. Instruction in recreation and leisure skills will ensure that students with visual impairments will have opportunities to explore, experience, and choose physical and leisure-time activities, both organized and individual, that they enjoy. This instruction should focus on the development of life-long skills.

Self-Determination

Self-determination includes choice-making, decision-making, problem solving, personal advocacy, assertiveness, and goal setting. Students with visual impairments often have fewer opportunities to develop and practice the specific skills that lead to self-determination. Students who know and value who they are and who have self-determination skills become effective advocates for themselves and therefore have more control over their lives.

Sensory Efficiency

Sensory efficiency includes instruction in the use of vision, hearing, touch, smell, and taste. It also addresses the development of the proprioceptive, kinesthetic, and vestibular systems. Learning to use their senses efficiently, including the use of optical devices, will enable students with visual impairments to access and participate in activities in school, home, and community environments.

Social Interaction Skills

Social interaction skills include awareness of body language, gestures, facial expressions, and personal space. Instruction also includes learning about interpersonal relationships, self-control, and human sexuality. Almost all social skills are learned by visually observing other people. Instruction in social interaction skills in school, work, and recreational settings is crucial. Having appropriate social skills can often mean the difference between social isolation and a fulfilling life as an adult.

For additional information on the ECC, refer to:

Developed by Texas ECC Committee 4-28-14

by Holly Cooper

Language Concepts

Communication and human interaction as well as the use of tools for learning  must have a solid foundation in concepts.

Children who do not have disabilities learn through direct experience with objects and people, and by observing other people interacting with objects and people.  Later in their development, typical children can learn further concepts by viewing pictures and videos of objects, actions and events.

Children with visual impairments cannot observe the actions of others, cannot observe the objects and actions people talk about, and usually cannot learn from looking at pictures of objects and events.

To attach meaning to words, children with visual impairments must have extensive and repeated experiences with real objects, and how they are used.  Adults teaching or interacting with young children who are blind and visually impaired must provide direct, hands-on experience with objects in their natural contexts, how they function, and ways to activate and use them.

Adults must not just teach kids the names of objects, but how they relate to activities and people.

Adults must make a point to include hands-on contact with objects and the actions of people by bringing the objects to the child or bringing the child to the object action or event (within reason, considering age appropriate issues, and safety)

Children who are very young or have additional disabilities and are not fluent communicators must have repeated experiences with real objects in real situations.  Do not allow yourself to assume that because you have shown the child something once, or even several times, they understand what it is and how it is used.  They may learn only part of the object or situation each time they are exposed.

Don't bombard kids with visual impairments with words.  For young or developmentally disabled visually impaired kids,

  • use short simple sentences
  • think carefully about the literal meaning of commonly used phrases and slang, minimize meaningless or ambiguous words or phrases
  • Use the child's name when you're talking to them.
  • Minimize extraneous noise in the environment (music should be a meaningful part of an activity, otherwise don't have it on, the same with TV and videos.  It's fine as a reward, or as a down time activity.)  Background noise, talk, and music teaches the child not to pay attention, or gives them too much complexity to attach meaning to.

When they are beginning to understand language, tell them simple easily understood information about what is happening:

Here comes your brother, he wants to play with your toy.

You don't want him to?
Don't hit him, say: "No, it's mine"
Can you give him something else to play with?
Pay attention!  When you're in a structured learning situation with the child, minimize your talk with others.
Honor attempts at communication, you don't have to say yes, just say now it's -- time, you can do that during free time

Routines

Routines occur naturally in life at home, work and school.

Leaning skills and concepts in their natural contextattaches more meaning to the content of what is learned, and helps the learner to retain the skills and concepts, and helps kids with blindness and other disabilities generalize the skills and concepts to other situations.

Using routines for learning means we plan events so that they:

  • occur frequently enough to facilitate learning
  • occur at predictable times (after lunch)
  • occur in a predictable fashion regardless of which adult is helping (brushing teeth, preparing morning snack at school)

Being predictable means:

  • The adult can prepare the materials in advance
  • The adult can prepare communication boards or other communication modes or assistive devices for use
  • The child can learn to expect them, and so (eventually) minimize undesirable behavior (like crying or protesting or fixating only on the desired activity)
  • The event (routine) can be "talked" about using symbols, sign language, objects or whatever the targeted mode of communication is, out of context - distant in time and place

Using a symbol for a routine helps build communication, and can be shaped into pre-literacy then literacy activities

Sometimes I hear people say:

He knows he gets free time after lunch, why do they sit him down everyday and say "next is free time"?

We do this because we want him to attach meaning to symbols: words, pictures, object symbols, tactile symbols, natural gestures, simple sign language.

Meaning leads to language, language must be present before literacy can be learned.

Begin to Use Technology for Communication

When you have predictable routine occurring,
When you have established the use of object symbols or other symbols,
Then look for ways to introduce communication devices.

Voice output simple communication devices should be:

  • Prepared in advance
  • Easy to understand and use
  • Accessible to blind and visually impaired students (objects, parts of objects, tactile symbols used as labels)
  • Integrated into a variety of naturally occurring activities
  • Modeled by the adult
  • Used regularly and repeatedly

By Robbie Blaha, Education Specialist, TSBVI Deafblind Outreach

with help from Stacy Shafer, Millie Smith and Kate Moss, TSBVI Outreach

SEE/HEAR Editor’s Note: This article first appeared in the Fall 1996 edition of SEE/HEAR newsletter published by Texas School for the Blind and Visually Impaired and Texas Commission for the Blind. It was developed in response to requests we have had from teachers who are working with children who have the most profound disabilities. Typical assessment information provided little for the teachers to use in developing programming for this type of child.


Since it’s inception of laws providing for the free and appropriate education for all students in this country our schools have seen a steady increase in the population of students who are considered to have the most profound disabilities. Although our willingness to serve these children is evident, our understanding of these students’ educational needs, assessment and programming is still very much in its infancy. It is easy to feel we do not know what to do with these students. Developmental checklists and assessment tools used with other populations are not often sensitive enough to provide usable information to those charged with the instruction of this type of student.

The purpose of this article is to: (1) present basic user friendly assessment questions and background information which relates to this particular population, (2) acknowledge the individuality of each of these children by building a personal picture of how they learn, and (3) provide useful information with which to develop programming. This is not intended to be a comprehensive assessment process but rather some questions and background information to consider when planning for this particular population.

What Can Be Done To Gain And Hold This Child’s Attention?

Attending And Biobehavioral States

A typical nervous system exhibits a range of levels of arousal. In all of us there is a structure in the brain stem that controls levels of arousal (biobehavioral states). Some examples of these levels of arousal states are deep sleep, drowsiness, alertness, anxiousness, and agitation. (Guess, 1988). If our nervous systems are n the normal range, we spend our day shifting across the states in a typical manner. We sleep at night, are alert and absorbed in a good book and drowsy after a big noon meal We may become very agitated when paying our bills or it a stray dog digs up the garden.

We are able to consciously control some of these arousal states. For example, if we find we are getting sleepy behind the wheel of a car, we stop to get a cup of coffee. We are calmer in a stressful situation if we bring along a friend or wear a favorite outfit. If something agitates or makes us anxious, we may engage in “self talk” as a form of state management. For example, to calm down we might think to ourselves, “I’m not going to worry about it. It’s not that big of a deal. If worse comes to worse I’ll just…”

For all of us, the only time we can learn new information is when we are able to achieve and maintain an alert state. This is why, after something traumatic throws you into an extremely agitated state, it is sometimes impossible to remember things that were said or to reconstruct a particular sequence of events. You may also find that, after a big lunch in a warm room, you become incredibly sleepy and have trouble reading a long memo from your boss. The ability to attain and maintain an alert state is essential for understanding and learning.

Children with profound disabilities may not exhibit the typical range of states. This is a characteristic of a number of students with profound disabilities. One student may always seem to be sleeping or drowsy. Another is chronically irritable or anxious, leaving adults fearful of interacting with her lest they “set the child off.” Many of these children may have brief cyclical periods of alertness, but seem unable to maintain this state long enough for typical instructional activities. Slightly over-stimulating this child can cause him / her to “shut down” to a sleep state.

Often these children have difficulty achieving and / or maintaining alert states. They may experience health setbacks that bring incredible drains on their energies and effectively prevent them from being able to respond to any environmental demands outside their bodies. In some students with deafblindness the lack of normal stimulation due to an extensive sensory loss causes them to spend much of their time in other than alert states. The key to instructing these children is to understand the internal influences on the child’s ability to attend to instruction.

There is a growing interest in the possibility that external factors can have impact on biobehavioral states in these children. During the assessments, we want to learn things about children that might help them develop better control of their states and maintain alert states for longer periods of time. The more adept they become to attending, the more opportunity they have for learning. Therefore assessment should help determine the child’s current profile of states and what adaptations to the environment may assist the child in achieving and maintaining an alert state.

The questions related to biobehavioral states that should be answered during assessments are:

  • What are the range of states the child exhibits across the day or week?
  • What are the child’s most common states?
  • Is this child able to reach the quiet alert or active alert state?
  • Can he maintain it?
  • What problems does the child have in shifting and maintaining states?
  • What variables appear to effect state in the child (especially attending)?

There are a number of tools that can help in obtaining this information. These include:

  • Assessment of Biobehavioral States and Analysis of Related Influences
  • Appetite / Aversion Form (see page 38)
  • Assessment of Voluntary Movement Component
  • Carolina Record of Individual Behavior (CRIB)
  • Analyzing Behavior State and Learning Environments Profile (ABLE).
  • The Key to Attending: The Orienting Reflex

People have a subconscious monitoring system that is working at all times. If this system detects something that needs our immediate attention, it pulls us to attention with the powerful orienting reflex. The orienting reflex is just that: a reflexive alerting to: significant things. It tells us when to pay strict attention so that we may make a decision whether or not to defend ourselves or to get more information. It alerts the senses to the fact that they need to pay attention, so that survival matters and novel things can be handled. (Silverrain, 1991)

All of us have orienting reflexes throughout the day. As an example, say that you are driving along listening to the afternoon news. The words roll by you until suddenly you hear your street address being said over the air. You snap to attention, lean forward, and turn up the dial to take in every word. You reflexively oriented to something that is important to you. The orienting reflex is powerful because it is the prerequisite to the alert state in the array of biobehavioral states. (Rainforth, 1982) It pulls you to an alert state from another state. Parents use this reflex all the time. If you have a fussy (agitated state) child in the grocery store, you try to distract her so she will calm down. (“Do you see that man with the funny hat? What do you think his name is?”). What you are actually doing is trying to trigger the orienting reflex in the child so she will shift from an agitated state to a calm state.

In the area of attending, a critical component in both assessment and instruction is the orienting reflex. (van Dijk, 1985) It is important to consider because the orienting reflex can potentially be used to help the child who is usually in “other than alert states” shift into attending. The hope is that you can capture their attention on a reflexive level; then provide instruction. (See “associative learning” discussion.)

If the child shows an orienting reflex in response to a change in position, a particular scent, or colored lights, these materials or strategies can be embedded in the lessons to try to gain the child’s attention and help him shift to an alert state. Once he makes that shift, you have a brief window of opportunity to provide further information and to attempt to extend the amount of time that he attends.

An important thing to note: There is a difference between the orienting reflex and a defensive startle. Overhearing your name in a conversation produces an orienting reflex. “The orienting reflex readies the nervous system for further learning.” (Silverrain, 1991) The blare of a fire alarm typically produces a defensive startle. A startle indicates an overload of the nervous system, which is aversive rather than appealing. The result is not “attending,” but rather physical agitation and / or disorientation and / or withdrawal. The child who experiences a defensive startle during an interaction with his instructors or his environment feels under assault rather than invited to participate.

If the stimulus is perceived as aversive, you are less likely to attend and more likely to spend your energies trying to get away from the stimulus. Children who cannot physically get away from an aversive stimulus may literally shut down into sleep to escape. That is why it is critical to determine what the child tolerates or is attracted to (appetite) versus what repels the child (aversion). (van Dijk, 1985)

Families as well as other members of the child’s team often have valuable pieces of information related to the things that seem to catch his attention or deeply bothers him. In the assessment process you need to identify things that elicit an orienting reflex so that you can embed those in your lesson to help the child maintain attending. You also need to assess what things are aversive to the child so you do NOT inadvertently include these things in lessons or social interactions with him and take away his ability to attend.

The questions related to orienting reflex that must be answered during assessment are:

  • What does the orienting reflex look like in this child?
  • What elicits an orienting reflex in this child?
  • What does the defensive startle look like in this child?
  • What elicits a defensive startle in this child?

There are a number of tools that can help in obtaining this information. These include:

  • Assessment of Biobehavioral States and Analysis of Related Influences,
  • Appetite / Aversion Form,
  • Assessment of Voluntary Movement Component

How Does The Child Take In Information?

Preferred Sensory Modalities

We all use our senses to gather information from our environment. These senses include: visual, auditory, vestibular (related to movement and spatial orientation sensed through muscles, tendons, joints, and the inner ear) kinesthetic (related to bodily position, weight, or movement sensed through the muscles, tendons, and joints, olfactory (smell), and gustatory (taste).

We also have preferred senses for taking in information which impacts how we best learn. Some of us learn new material best by listening, others prefer to read the information, and others may need to write new information down. It is important to determine which sensory channel (s) the child with profound disabilities prefers to use and then provide instructional activities and information through those preferred channels. For example, a child may alert to a change in lighting. She may attend longer if there is some music involved in the lesson. She will accept certain types of tactual input in the palm of the hands but never on her mouth. Looking at the self-stimulatory behaviors (i.e. rocking, flicking, etc.) can also give you some information about which sensory systems have value to the child. (Moss & Blaha, 1993)

It is helpful to systematically test across all sensory channels with tools like Every Move Counts and to compile and analyze anecdotal information from families and staff who have daily interactions with the child. These observations contain clues about sensory things involving water. You observe that the one sound that seems to “tune him up” (bring him to attending) is the sound of water running from a faucet. That piece of information tells you that the child recognizes a consistent and a distinct auditory cue and associates it with something that he really enjoys.

The strategy of “multi-sensory approach” is sometimes recommended for this population. There seem to be different working definitions for this term. This approach is sometimes perceived as stimulating all the child’s senses at the same time with the same level of intensity. This version of multi-sensory approach assumes a couple of things:

  1. All senses are triggered in pleasant ways. This may not be true for these children. A child may orient to music through the auditory channel but find tactile information through his hands frightening. Combining these with equal intensity in a lesson may throw the child for a loop.

  2. The child can combine completely different sensory input into a meaningful whole. This may not be possible for all children. For example, some students may need to focus on one channel at a time to understand what is happening. It may be better to pace the lesson so the child can have a longer time to look at or touch something before you start talking about it. You can relate to this need if you think of the times you have turned off your radio when you were looking for a freeway exit in a large unfamiliar city.

The questions that should be considered in assessment related to sensory channelsare:

  • What sensory channels are most effective for gaining the child’s attention?
  • What sensory channels are important for conveying reliable information to the child?
  • What degree of sensory information or pacing of presentation of information helps the child shift his state to attending?
  • What channels are associated with orienting reflexes?

Assessment tools that help to provide this information include:

  • Learning Media Assessment (LMA),
  • Every Move Counts,
  • Appetite / Aversion Form,
  • Inventory of Self-Stimulatory Behaviors.

Does The Child Remember And Learn?

Any type of learning has to do with memory. The following are indicators that a child is remembering specific sensory information.

Habituation As An Indicator Of Memory

When I first moved to Austin I rented a home near the airport. It was a great house but unfortunately stood under the flight path. Incoming flights woke me up at night and interrupted phone conversations for the first few days. After a time, however, I tuned it out and stopped noticing the noise. When my sister came for a visit she asked me, “How can you stand it?” I honestly had no idea what she was talking about. I had gotten used to the sounds and had stopped hearing them. This is an example of habituation. Our minds unconsciously sort through incoming information. Habituation is an indication of memory because you only get used to things that your system is able to remember. Habituation decides what we should ignore or notice and is characterized by a lack of response. This is very important as it allows the nervous system to focus on relevant events and not be overwhelmed by all the trivial types of stimulation occurring around us all the time.

Watching for signs of habituation in a child is important because it tells you he is remembering. Many times you hear comments like, “He used to really jump when the intercom came on, but now he doesn’t seem to notice it. I don’t know if he can still hear it.” Or “This used to be her favorite tape, but now she doesn’t seem to respond to it.” These could be indicators of habituation which signifies that the child views the information as “old news.”

Building Associations As An Indicator Of Memory

Building associations between two events is a type of learning and remembering. Linking a new fact with a familiar one (associative learning) is one way we grow to understand the things around us. Before we talk about ourselves, however, let’s talk about less complex life forms and what they have shown us about associative learning.

“Snails, believe it or not, demonstrate simple associative learning. Recent studies show the effects of learning on the nervous systems of snails. Large groups of sea snails are given a fast spin (simulating the roll of a wave) which makes them contract. Each spin is preceded by a burst of bright light. Bursts of bright light alone have no effect on snails. After a while, the snails will contract when the light is shone on them, as if a spin were imminent. Researchers have shown that during this learning, new nerve connections have grown that did not exist before. The snails began to react or anticipate the spin simply by association with the burst of light.”

“You might find it interesting to know that new born human infants have also shown the ability to associate a preceding event with one that follows. A hungry, crying baby will become quiet when she hears her parent’s footsteps approaching in the night because she anticipates the bottle. We know that the human nervous system is capable of making associations between two events when the final event in the chain relates to basic survival or pleasure needs.” (Silverrain, 1991)

A child who dearly loves the taste of pudding initially shows no recognition of a spoon. However, over time, you may see him develop the same level of enthusiasm for a spoon as the pudding because you the repeatedly paired the spoon with the pleasure of eating pudding. The ability to make an association between the spoon and the pudding is an example of associative learning. (Note: We have learned from early studies that present the spoon immediately before he tastes the pudding is the way to help the child make the connection.) By building these meaningful pairs in a child’s life you are expanding his understanding of the world. Noting any associations that child may have already is important assessment information.

Anticipation As An Indicator Of Memory

Anticipation should be considered an indication of learning and memory. When a child feels his bib go about his neck and begins to open and close his mouth, he is anticipating the next step. He is showing us that he remembers. Unlike habituation that is characterized by a lack of response, anticipation is characterized by a “tuning up” of the system and some action on the part of the child that says “Oh yeah, I remember this!” Anticipation tells you that you have been successful in developing associative learning. You have built an association between bib and eating.

Anticipation of an upcoming event can “rev you up” to maintain an attending state. For example, a person is on a road trip and knows that the exit he must take will be a few miles past a factory on the left. This guy may drive along lost in his own thoughts for thirty minutes or so until suddenly, the factory appears on the left and triggers an orienting reflex. He shifs into the alert state and begins to anticipated the exit. Because he anticipates the exit, he stays alert for a short period of time and looks closely for the sign. Using cues with children helps them anticipate and pull to attending so they can learn.

Surprise As An Indicator Of Memory

Building in a surprise or what has been called a mismatch of expectations (van Dijk, 1985) is a test for memory and learning. A mismatch occurs for the child when he anticipates his mother picking him up and playing a particular swinging game, but is treated to this same game by this father. The child registers his surprise by fluttering his eye lids and breathing more rapidly. The surprise elicits an intense alert state in which associations previously learned are reviewed and compared with the new experience important learning has taken place for him. A child responds to a mismatch of expectations only because he remembers what should have happened.

Questions to ask related to assessing cognition (habituation, anticipation) include:

  • Are there things the child used to orient and respond to that he now seems to notice?
  • Does he stop responding after 2-3 times?
  • Does he seem to pair things, events, and/or people together?
  • Does the child show anticipation of what is about to happen?
  • Does the child register surprise when there is a change in a familiar routine?
  • Does the child seem to know familiar versus unfamiliar people?

As assessment tool that helps to provide this information is Every Move Counts.

What Can This Child Do To Impact His Environment?

Since learning is something the child does with you and not something you do to him, it is critical to determine the easiest way for the child to respond so that he is able to successfully participate. Possible responses that these children might make are changes in affect, vocalizations, gaze shift, and body movements. (Korsten, 1993) Even if these responses are not intentional, you should identify a particular response he gives and try to shape it into a purposeful response. Systematically testing for these responses is an important part of assessment.

Systematic Inventory Of Voluntary Movements

It is important to systematically observe the child in all the positions typically used with him and inventory the voluntary movements he can make. Some of these children are said to have no voluntary movements to use for instructional purposes. Typically this is not the case. When a child is observed in a variety of positions he may show a surprising number of movements. From this inventory of voluntary movements, the team can target a particular response(s) which will allow the child to participate in an activity.

Many children can make a particular movement easily in one position but not in another. Some positions are more stimulating or relaxing for a child and this effects their ability to attend. (“As soon as we put him in side-lying, he stops fussing.”).

Additionally, some children, when moved from one position to another, experience a significant change in their biobehavioral state. They may find the experience frightening and need a period of time to recover before they can attend. These children could benefit from strategies to make the transition less aversive (e.g., touch cues which signal that they are about to be taken from their travel chair or slowing down the pace of the transition). Other children may be at their most alert following a change in position. It is an individual things.

Questions related to voluntary movement that can be addressed in assessment include

  • What specific voluntary movements does the child exhibit across positions?
  • How do different positions affect the child’s level of arousal or biohehavorial states?
  • Does transition from on position to another cause a significant change in the child’s biobehavioral state?.

Assessment tools that help to provide this information include:

  • Every Move Counts
  • Assessment of Voluntary Movement Component
  • Physical Therapy Assessment
  • Occupational Therapy Assessment

Using The Assessment Information In Developing Programming

Programming Strategies

Once this assessment information has been compiled the educational team should be able to draw on it in developing their program. Ann Silerrain suggested some strategies to follow in her 1991 article. These include:

  1. Use assessment data to determine learning media that provides the appropriate level of stimulation---enough to be alert and not enough to cause withdrawal. We must forget about stimulation for the sake of stimulation. “Tolerating stimulation: is not an appropriate goal. Damaged nervous systems need the appropriate type and amount of stimulation; they do not need to be bombarded.

  2. Develop activity routines which have a predictable sequence of steps, objects, or actions that evoke the orienting reflex to reengage the child throughout the activity and provide opportunities for the child to respond or take a turn. Remember pacing is critical in getting child response.

  3. Use familiar objects and people in daily routines as a basis for instruction. Evaluate anticipatory responses to sensory cues to determine the appropriateness of the materials or actions used for cuing. As you cue the child, look for orienting reflexes to occur. Remember that you want to get an orienting reflex, follow with an activity of high interest or one that comforts or meets a basic need as a way of rewarding the child’s response. Over time we should begin to see the child show signs of anticipation. All things we want the child to respond to should be real things or actions that are used by or with the child in everyday routines.

  4. Design a daily schedule of predictable and pleasurable events or routines. With any activity, if we want to see an anticipatory response (evidence that the child remembers) the activity must have a strong emotional appeal for the child.

  5. When we see the child anticipate events and show some awareness of the functional use of objects, then primitive communication choice systems can be used. When a child does such things as gaze at a preferred item then at you; tactually explores two objects and picks the relevant one in context; pushes an object toward you; pulls or pushes your body in a way that says “I want you to do this with me,: then you are beginning to move into the realm of intentional conversation.

  6. When the child is consistently anticipating a particular object or action in a routine, toss in a mismatch to test awareness and communication. This check can only occur within the context of a stable routine. For example, the child is routinely expecting to have you present her red bib before meal time, but instead you put a hairbrush in front of her and her bib off to one side. Will she realize there is a problem and try to communicate that to you? Will she try to get your assistance in resolving the problem? These are indicators of a readiness for more complex learning.

Conclusion

As the family and the other members of the educational team work together they become more able to recognize and respect the skills and strong personal preferences that children with the most profound disabilities show us. All the children have ways of showing us what they want more of and what they would like to avoid. It is our responsibility to develop the assessment expertise needed to be aware of those messages and to use them to build better learning environments for the child.

References And Resources

Guess, D., Mulligan-Ault, M., Roberts, S., Struth, J., Siegal-Causey, E., Thompson, B., Bronicki, G.J., & Guy, G. (1988). Implications of biobehavioral states for the education and treatment of students with the most handicapping conditions. JASH, 13 (3), 163 - 174.

Korsten, J.E., Dunn, D.K., Foss, T.V., and Francke, M.K., (1993), Every move counts. Tucson, AZ: Therapy Skill Builders

Moss, K. and Blaha, R. (1993), Looking at self-stimulation in pursuit of leisure or I’m okay, you have a mannerism. P.S. NEWS!!!, July 1993, pp 10-14.

Rainforth, B. (1982). Biobehavioral State and Orienting: Implications for Educating Profoundly Retarded Students. TASH Journal, Vol. 6, Winter, 1982 (33-37).

Silverrain, A. (1991). An informal paper: teaching the profoundly handicapped child. San Antonio: ESC Region 20.

Simeonsson, R. J., Huntington, G.S., Short, R.J., & Ware, W. B. (1988). The Carolina record of individual behavior (CRIB): Characteristics of handicapped infants and children. Chapel Hill: Frank Porter Graham Child Development Center, University of North Carolina at Chapel Hill.

Smith, M., Levack, N., & MaGee, B. (1996). Teaching Students with visual and multiple impairments: a resource guide. Austin: Texas School for the Blind and Visually Impaired.

Van Dijk, J. (1985). Personal notes from a seminar.

There are few other resources as valuable to family members of children with visual impairments and deafblindness as state and national family organizations.

State Organizations (Texas)
National Organizations (United States)

 State Level

DBMAT

Deaf-Blind Multihandicapped Association of Texas - The mission of DBMAT is to promote and improve the quality of life for all Texans who are deaf-blind multi-handicapped, deaf multi-handicapped, and blind multi-handicapped.  Listen to a message from the members..

TAPVI

Texas Association of Parents of Children with Visual Impairments - The Texas Chapter of the NAPVI supports parents of children with visual impairments. - Listen to a message from the members..

TXChargers

Texas Chargers - Texas Chargers, Inc. encourages, educates, and enriches individuals and families living with CHARGE Syndrome.   - Listen to a message from the members..

TXHandVoices

Texas Hands and Voices - Texas Hands & Voices (TX H&V) offers support, information and resources in an unbiased manner to families with children who are deaf and hard of hearing.  Our outreach activities, parent/professional/community collaboration, and advocacy efforts are focused on enabling Deaf and Hard-of-Hearing children to reach their highest potential.  - Listen to a message from their members.

TXPBC

Texas Parents of Blind Children - Texas Parents of Blind Children (TPOBC) is the state chapter of the National Organization of Parents of Blind Children (NOPBC), a division of the NFB of Texas, a national membership organization of parents and friends of blind children. Our state chapter was formed at the NFB of Texas State Convention in 2006 in order to reach out to parents of blind children and provide vital support, encouragement, and information. - Listen to a message from the members..

TxP2P

Texas Parent to Parent (TxP2P) is committed to improving the lives of Texas children who have disabilities, chronic illness, and/or special health care needs. TxP2P empowers families to be strong advocates through parent-to-parent support, resource referral, and education. 

ARC

The ARC of Texas - The Arc of Texas creates opportunities for all people with intellectual and developmental disabilities to actively participate in their communities and make the choices that affect their lives in a positive manner.

TxProject1st

Texas Project FIRST, created by parents, for parents...this web site is a project of the Texas Education Agency and is committed to providing accurate and consistent information to parents & families of students with disabilities

Family to Family Network

The mission of Family to Family Network is to help families of children with disabilities by providing information, training, referral and support 13150 FM 529, Suite 106 Houston, TX 77041 Phone:  713-466-6304 Email:  Website:  www.familytofamilynetwork.org/ Texas Project First Website:  http://texasprojectfirst.org/index.html    

 National Level

CdLS

 

 

 

The Cornelia de Lange Syndrome (CdLS) Foundation is a family support organization that exists to ensure early and accurate diagnosis of CdLS, promote research into the causes and manifestations of the syndrome, and help people with a diagnosis of CdLS, and others with similar characteristics, make informed decisions throughout their lives.

The CdLS Foundation is a national non-profit organization that has served people with CdLS and their families since 1981. The Foundation’s mission is reflected in its slogan: Reaching Out, Providing Help, and Giving Hope.

The Foundation is the only organization dedicated to CdLS in the nation. It distributes a number of publications to families and professionals caring for children with CdLS, and hosts meetings and conferences where researchers and families can meet to exchange information. The Foundation also acts as a facilitator between families and professionals, utilizing a team of professionals who lend their expertise to those caring for a child with CdLS.

NAPVIJewishGuild

National Association of Parents of Children with Visual Impairments - NAPVI and the American Foundation for the Blind (AFB) are so pleased to bring you our web site, www.FamilyConnect.org, an online, multimedia community for parents and guardians of children with visual impairments. FamilyConnect gives parents, grandparents and other caretakers a place to find comprehensive resources and support 24 hours a day, with access to message boards where they can talk to other parents, compelling videos featuring real-life families, parenting articles, a mom-authored blog, and links to local resources. The site also features sections dedicated to multiple disabilities, technology, education, and every age group from infants to teens. Visitors to www.FamilyConnect.org can also create a personal profile and receive information on news and events based on their child's age, eye condition, and location.  Listen to a message from NAPVI.

NFADB

National Family Association for Deaf-Blind - NFADB exists to empower the voices of families of individuals who are deaf-blind and to advocate for their unique needs.  NFADB Videos on Deaf-Blindness (English long and short versions), Spanish (NEW)