Who Needs this Instrument?

This instrument was developed for:

    * Speech-Language Pathologists
    * Educators
    * Paraprofessionals (Classroom Aides)
    * Parents of children who cannot speak.

They need an instrument that brings together information from reliable sources so that together the children, their families, and their educators may develop more effective communication partnerships. First they need help talking about the way communication works naturally in the lives of children who are unable to use speech. Second they need to plan steps to talk with the children and coordinate teaching communication efforts at home and at school. The team member will have a much easier job in designing communication boards or programming electronic devices with voice output because he/she has this much-needed information. This instrument helps them find alternatives when important messages are confused. The initial practice can be more successful using the most motivating topics for each child.

Educators and SLPs should expect parents of children who cannot speak to be expert interpreters of the children's natural communication. Parents have had more time and many more experiences with the child than any professional. Even with this knowledge acquired in many situations with many people, the children's parents have often been discouraged in their attempts to participate actively in their child's educational planning. Through using this instrument, parents are relieved that they can now contribute their expertise as a vital part of their child's educational assessment and planning. They can employ the same goals and strategies at home as the other team members use at school. Together they can help support the child's communication and learning experiences.

Three to five of every 1000 children enrolled in school have such severe speech impairments that they become socially isolated and are at risk academically. An estimated two million children and adults do not speak. This number is projected to be three million by 2020 (Huer, 1998), who cross boundaries of gender, age, culture, and socio-economic groups.

The range of persons with severe speech impairments goes beyond a single diagnosis. They are children with autism, cerebral palsy, neuromuscular disorders, strokes, and traumatic brain injuries. Some may exhibit normal development and motor skills except for speaking. Others have multiple physical impairments which affect the typical production of speech and language. Their communication may be impaired due to insufficient muscle support they need in breathing, producing voice, using their lips, tongue, and palate. At times some of them may be able to produce words spontaneously, but not at other times. Sometimes they have difficulty with listening as well.

Too often, children who do not speak are misunderstood or ignored altogether. They often live their lives in speechless isolation. They feel powerless (Montgomery, 1980) even though they may be competent thinkers with significant potential. They become distressed in their interactions with others. Their communication partners dominate and cut off their conversations. These life experiences may further restrict the children's development of language. These differences in interaction reduce the children's motivation to participate.

What are the purposes of this instrument?
This instrument looks at communication differently. Because children who do not speak communicate differently, the purposes of this instrument are to:

   1. Provide a description of the current, natural communication of children who do not speak.
   2. Describe the thoughts, feelings, needs, values, and hopes that they communicate.
3. Provide an instrument around which parents, educators, and speech-language pathologists (SLP) can collaborate by sharing assumptions, information, insights, and goals.

Purpose # 1: Provide a description of the current, natural communication of a child who does not speak.

Children who do not speak naturally communicate everyday with their voices, gestures, smiles, and frowns using whatever physical strengths they have. The instrument serves to draw forth information about the natural and novel ways the children communicate by directing their glances, making subtle movements, changing the pitch and volume of their voices, and indicating through unique facial expressions. They are given credit for expressing themselves with creative alternatives other than speech. Instead of assuming that the children do not intend to communicate with their gestures and vocalizations, their familiar and most competent interpreters can describe the full and deliberate attempts the children make as they communicate.

Parents have learned to recognize these signs as clearly as if the children used spoken words. When parents, educators, and speech pathologists understand and respond to what the children "say without words," the children expectantly use those signs again and again. Unfortunately, the children are not always understood, especially when they go into different classrooms with different educators and speech-language pathologists. Their messages often go unheeded. Sometimes the children become frustrated and/or quit trying because they are not understood.

Purpose # 2: Describe the thoughts, feelings, needs, values, and hopes that the child communicates.

Each child expresses certain intents and particular interests in favorite objects, preferred activities, special people, and certain foods. Each child also communicates deep love, everyday concerns, and sometimes imaginary situations. Without words, children who do not speak contribute to, inspire, and encourage family and friends. This instrument "exposes a level of communication of unsuspected richness, one in which human beings express their true meanings" (Miller as cited in Locke, 1998). Natural communication occurs in everyday situations with people around them. This communication differs from person to person, topic to topic, time to time, place to place. In my research (Rogers, 1999), parents interpreted their child's communication on more than 92% of the communication messages on this instrument. The educators averaged 78%. The speech-language pathologists, actually having less time with each student, described some 44% of the statements on this protocol.

Speech-language pathologists for many years have mostly focused on certain functions of language, such as labeling, requesting, and repeating. These few functions actually form a relatively small segment of the total communication the child uses. This instrument finds ways better to describe the totality of their communication, their thoughts, feelings, needs, values, and hopes.

Purpose # 3: Provide an instrument around which parents, educators, and speech-language pathologists can collaborate by sharing assumptions, information, insights, and goals.

Collaboration is literally "working together," to cooperate, to combine insights from more than one source. At school this community of parents, educators, aides, and speech-language pathologists forms the child's educational team. This instrument enables them to collaborate by listening to one another and describing the child's real communication. The more people understand what a child communicates in his/her wordless language, the more accurately they can assess the child's current proficiency. The more they share descriptions of communication, the better they can plan instruction. This instrument provides a collaborative way to share those understandings. Most teams only superficially involve parents by having them listen to educators' and speech-language pathologists' reports and agree upon educational goals written around school tasks.

Using the profile creates a space where parents, educators, and speech-language pathologists all can come together as expert witnesses. They need openly to share assumptions about the children's communication, cultural expectations, goals, effective interventions, educational priorities, and resources. This instrument helps prevent restrictive attitudes toward the children and helps reduce communication barriers between parents and professionals. So many Individual Educational Plan (IEP) meetings leave parents as passive listeners unable to contribute what they know about their child to the educational plan of their child. This instrument is designed to change that dynamic. This instrument involves parents as viable sources of insight and support.

In hearing and understanding, others honor the children as persons, convey their thoughts into words, and encourage further communication. Parents who have been resistant to what the professional staff is doing become collaborators in defining, assuming, and carrying out responsibilities which support the child's development. Combining information about classroom needs and physical resources leads the team to structure and support participation around interesting and meaningful challenges. Parents are seriously involved in formulating the educational plan so that their goals and strategies are the same as those of the school professionals. Most importantly this instrument provides a platform from which to hold productive conversations between home and school on the education of children who do not speak.

Why is this instrument different?
This instrument is different because:

1. The information is amassed from multiple sources over a significant period of time to provide a more complete description of both what the children communicate and how they communicate;
   2. It uses the knowledge of parents, significant others, and professional staff as valued and experienced sources of insight and support;
   3. It is based upon the child's natural communication, not a literal "diagnosis" or developmental stages;
   4. It is dependent on collaboration for planning effective intervention;
5. It uses natural communication of relationships the children have developed as they initiate and respond to peers and familiar adults;
   6. It connects directly with relevant classroom issues.

The educational team needs a complete description of what and how the child communicates. Those descriptions cannot be gathered from a single person in one isolated situation. Only a team can amass and describe such an extensive "communication repertoire" as together they accurately and sensitively interpret the children's unique communication. Parents, significant others, and professional staff are all valued as experienced experts. Too often educators have perceived parents as resistant to educational evaluations of their child. With this instrument, parents can become active contributors to the school assessments.

This instrument does not identify the typical consonant sounds and vocabulary the child is able to produce nor does it compare these results with those of typically developing children. There are already many such instruments. The results of administering many of these instruments indicate simply that the child does not use speech. That process does not describe what and how the child does communicate.

The responses on the instrument describe the individual child's interests, communication, and learning styles, which are quite separate from a literal "diagnosis" of these children. Children with the same diagnosis often communicate quite differently. Parents, educators, and speech-language pathologists find that accurate interpretation of the child's communication is more important in educational planning than is the "diagnosis." The professionals recognize that the primary information needed for their teaching is a comprehensive understanding of the child's current communication. Only then can they structure optimal academic and social opportunities using each child's spontaneous communication as the starting point for instruction.

Assessors of children with speech impairments in one study (Linehan & Brady, 1995) held significantly higher educational expectations after reading reports based on "observations in the daily environment, educational history, progress on the IEP, parent survey and teacher assessment of practice skills." This instrument is ecologically based, using observations, parent report, and teacher assessment of everyday communication. This collaborative assessment leads to higher expectations and allows parents, educators, aides, and speech-language pathologists to plan effective instruction.

This instrument is important because in its development, it was discovered that children communicate more about relating to other people than about their own physical wants and needs. One of my first biases as a speech-language pathologist was that communication was primarily about a person's making his/her wants and needs known. To communicate wants and needs meant a person had to be able to name objects and activities. Those requests were the ones I most frequently wrote into IEP goals.

What I observed in the research used to develop this instrument was that children with severe speech impairments were more concerned with communicating about relationships than about their individual wants and needs. Requests to meet their own wants and needs only occupied about 21% of their utterances, as interpreted by their parents. The children communicated more than twice as often about their relationships with others. Most of their communication time was spent in negotiating their relationships with people (51.6%) and making unique comments about events (20%). One child communicated, as interpreted primarily by his mother, as little as 5.8% about what he wanted to eat and do, or how he felt. For him, 75% of what he communicated at home was information about his sister, his dad, his mother, and baby sitter. Even a child who was limited in vision and could not move around independently communicated 55% of the time about her relationships and only 27% of the time about her wants and needs.

That personal and social interests typically dominate most communication was confirmed by a study of Dunbar (Locke, 1998), an evolutionary psychologist at the University of Liverpool. In one group of Britons, 60% of the conversations pertained to personal relationships and experiences. The utterances of this group were recorded in a university refectory, not in a familiar home setting. Nevertheless, in light of my research, children are significantly more motivated and equipped to communicate about relationships and interactions than they are about wants and needs.

This instrument differs from other protocols in that the focus is more connected to home and classroom issues. Instead of standardized scores, this instrument gives ways children can participate. For example, educators get help knowing "How do they say yes and no? How do they say they do not understand? How can I know what really matters to and motivates them? What ways can I help them participate with others?" Educators get help solving these everyday classroom riddles obscured by the children's lack of communication.

The critical keys to developing effective education programs become (1) amassing information from multiple sources over a significant period of time to describe the child's communication in everyday relationships and environments, (2) collaborating by using the vital knowledge about the child's communication to plan effective instruction, and (3) connecting the child and his/her communication to relevant classroom issues and significant relationships. These steps require collaboration of the entire team, bringing together as much experience and expertise as possible to support the participation of children who cannot speak.
How was this instrument developed?

This profile was based upon observations of seven children who could not speak and extensive interviews with their parents, teachers, and speech-language pathologists (Rogers, 1999). These observations and interviews were conducted in the homes and in the classrooms of these children. The children's ages ranged from 7 to 14 years and represented Euro-American, African-American, Latino, and Japanese-American cultures. Since then, the protocol has been used to plan instruction with various educational teams of parents, educators, aides, and SLPs. These teams wrote new communication goals and developed different strategies to plan instruction from preschool and to high school.

The seven children of the original study represented a group of children who had been given multiple diagnoses, including Rett syndrome, Wernig-Hoffman syndrome (a form of muscular dystrophy), autism, mental retardation, visual impairment, and traumatic brain injury (near drowning). The children demonstrated a wide range of physical and sensory abilities and educational experiences even within a single diagnosis. Three of the children had complete mobility, walking without support; while four of the children had limited mobility using wheelchairs to go to and from school. Five wore glasses, and three did not. Two responded better in quiet surroundings and reacted angrily to the loud sounds of the phone and blender. None were considered hearing impaired.

I found the children had learned different communication rules depending upon their family and their culture. They knew whether adults or children should initiate a conversation and what topics were important to discuss. One boy followed the Spanish spoken by his mother and grandmother and the English I used. He observed the different rules of conversation and conformed to the expectations of each different communication partner. Another girl followed the more traditional Euro-American patterns, e.g. looking directly at the speaker and responding immediately to others' comments and questions. A third child, however, showed respect by not looking directly in the eyes of adults. These cultural/ethnic influences were a very real part of each child's communication profile.

I did not attempt to arrange responses in a developmental sequence. The sample was too small, the responses too individual. The parents were resistant to using developmental measures because they felt that their children had been assessed "unjustly," whenever educators and speech-language pathologists had compared the children's communication to "typically developing children." Typical development did not provide an actual indication of the children's ability to function. For example, parents were told that their children demonstrated poor development because they were using gestures and vocalizations, precursors to speech. However the children's lack of speech production was not a developmental issue but rather was due to their motor and neurological impairments. These impairments prevented their following a typical pattern of speech development and meant that they had to continue to use gestures and vocalizations to communicate. In fact, some children had created ways different than the developmental sequence. They had developed forms other than speech to communicate by relying on their other motor and neurological strengths.

When the children's atypical responses were interpreted as their not meeting the prerequisites to learning, the children were assigned lower developmental levels. As an example, they were not taught reading and writing which could support their language development. Instead they were continually given additional listening and speaking exercises. They became discouraged by unnecessary repetition of instruction about material they already had mastered.

The instrument was completed and evaluated by three focus groups, one of parents, another of educators, and a third of speech-language pathologists. They reviewed the instrument and suggested revisions and possible uses. Many of these revisions have been included in Hearing Them into Voice. I then brought together on one form the information about one child from the three sources, parents, educator, and speech pathologist. I found what mattered most was when the child's messages were clearly understood and their communication partners responded appropriately. Then the child's participation increased.

One parent noted that a true picture of his child came right off the page. Another commented "What a relief! I understand what you are looking for!" An administrator commented that using this instrument "saved" a highly volatile situation where parents had been hostile to the child's educators, SLP, and school principal. These parents felt the educators had not understood the actual educational needs of their child, and the administrators had become referees in a heated debate. Speech-language pathologists commented in response to several insights they got from the instrument "how would I know that?" without using this instrument. An occupational therapist commented that while it focuses on communication, the instrument covers activities of daily living. Finally one parent praised the report based upon this instrument by saying, "You've said for me and for my daughter what we cannot say." Hearing Them into Voice is saying what often has not and cannot be said about what and how children communicate. Hearing Them Into Voice is finding ways to help children participate. Hearing Them Into Voice builds a community of parents, educators, aides, and speech-language pathologists around share assumptions as together they assess and plan instruction integral to the children who cannot speak.