Sebastian and Rosarita heard about the club from Terry Kappe, a speech language pathologist he knew in elementary school in his community. She kept in contact with the family and sent them an email as the invitation to join in the meetings. Sebastian agreed with his mother that they would give it a try. They have attended every meeting for four years either in person or on zoom. The second Monday of the month at 3 p.m. they promptly connect with the participants whom they have come to know and who have come to know and love Sebastian and Rosarita.

Where had Terry learned about the iBookclub of Pasadena? She participated in the SCAAC-N gatherings where speech language pathologists and educators collaborated to understand better how to meet the needs of students and families as they used augmentative and alternative communication. Open to the entire surrounding communities, SCAAC-N was formed as the Southern California Augmentative and Alternative Communication-Network. She knew to recommend Sebastian acquire a speech generating device with eye gaze as well as use an ipad with proloquo2go. Sebastian seemed to prefer the simpler and yet speech generating application which he accesses with two head switches.

How does Sebastian prepare for the iBookclub topics each month? He begins by reading books from the library and/or accessing books on Bookshare, a free public website with a choice of hundreds of audio books. Then he formulates the messages by accessing two head switches attached to his wheelchair. When he presses the one on his right, the scanner on the device goes from row to row of a group of letters of the alphabet. When the row is highlighted, he selects the row by pressing the switch to his right side. Then Sebastian scans the columns to selects the letter he wants to use to spell every word. When all the letters are put into words, he can listen to the words if he prefers or go on the complete the sentence by activating the switches again on his ipad. Gradually his words are combined into paragraphs, and the story is told. He saves his presentation as they work. The leader participants of the bookclub meetings count on his preparation to start off the discussion every month whether on zoom or in person.

What a vital contribution he makes! He states the objective facts of the story and with total honesty and forthrightness comments on the feelings of the main characters. i.e. When discussing Indigenous People Day in October, Sebastian reported on Christopher Columbus and the voyage he made with the three ships, however the way Indigenous people were treated by these explorers was exploitative and reprehensible. Sebastian relates to present day events as he reports on baseball stories of current series. He insisted on going to the Jackie Robinson statue at the baseball stadium where he celebrate the 42 on Robinson’s uniform that matched his own 42 birthday. Together they advocated for accessible bathrooms in a popular local restaurant which they frequented as a family.

From their worthwhile contributions to the iBookclub of Pasadena, Sebastian and Rosarita did not hesitate to have his photo reached out to the 200,000 speech language pathologists when we sent it in to be published in the Leader magazine, a publication of the American Speech Language Hearing Association. As the community reached out to Sebastian, he has reached out in concrete ways into the lives of others in his community.

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The instrument consists of a total of sixteen pages. The first page, the title page, identifies the name of the child and the team members, all participants in the child’s assessment and instruction. Of primary importance is child’s name and date of birth. Children respond to those who use his/her name correctly throughout assessments and planning. The date of birth is an initial point of reference for the team. Noting the child’s chronological age may suggest possible interest levels, not to mention when to celebrate his/her birthday. The team members begin with the names of family and caregivers, then educators, aides, and speech-language pathologists. The last space is to identify which team member is completing this protocol and when the protocol was completed...

The second page contains instructions as to how to complete the forms. Team members are asked to identify different messages and forms the child uses to communicate. A word of encouragement is given about importance of collaboration in assessing and planning instruction.

The instrument is organized into the following eighteen sections taken from the categories which developed from research (Rogers, 1999):

What I Like Best

Special Words I Use and What They Mean

My Personal Preferences

Significant Life Experiences I Contribute to Others

I Communicate How I Feel By

My Social Graces Include

My Family Follows These Communication Rules

What Makes Me Laugh

What I Like to Play

How I Take Care of Myself

How I Initiate and Take Responsibility

How I Get Along With Others

Ways I Show I Am Thinking

I Know My Timing Works Best When

I Am Having a Bad Day When

Ways I Have Begun to Read and Write

What Augmentative and Alternative Communication Works Best for Me

Summary of Communication

Each section has from three to twelve statements which are to be completed with descriptions of each child’s way of communicating the above. Below each statement are examples taken from observations of children and interviews with their parents, educators, and speech-language pathologists which serve to stimulate the ideas of those filling it out.

We begin with What I Like Best. Since each child has favorites which attract and keep their interest, the instrument begins by asking for identification of their favorite objects, activities, people, foods, books, and videos. The instrument asks what activities/objects the child always likes and how they show his/her interest, such as smiling, looking, or getting quiet. Then spaces are provided for describing activities and objects the child usually (but not always) likes and those he/she only sometimes likes. The children’s communication about these favorites is often most consistent and complex, and thus provides a context for more accurate descriptions. Place for listing specific videos, movies, and TV programs provides information educators and speech-language pathologists can use. By accurately interpreting the children’s most consistent communication, the child’s educational team can use and expand upon the child’s interests to plan motivating and effective instruction.

Special Words I Use And What They Mean provide an occasion to write down each word the child says and what it means. Often children who do not speak do use specific utterances to stand for words or phrases. One parent interpreted that when her child said “ju,” she wanted something to eat, even though “ju” sounded like she was asking for “juice.” Another child consistently used “kuk” for “truck,” meaning both asking for toys or upon seeing a truck on the street. When communication partners understand these idiosyncratic expressions, even if few in number, the child has fewer frustrations and, hopefully, fewer disruptive behaviors. Parents, educators, aides, and speech-language pathologists can indicate here how frequently they understand the child’s communication. If they understand most of what the child communicates, they would indicate 80%-100%. If they have to guess half of the time, they could probably circle 50%. If the child rarely communicates and the messages are difficult to interpret, they would mark 25%. The less the child is understood, the greater is the need for this instrument in order to plan effective intervention.

My Personal Preferences allows participants to describe the children as an unique human beings each with his/her own identity. They have routines that they prefer and make them happy, for example, they may like someone to tickle them or they may prefer to tease another person. Sometimes what a child chooses to do when he/she is alone provides educators with a clue to preferences to offer during free time. Families and teachers can share their favorite stories about the child which reveal the child’s unique personality, biography, understandings, and problem solving strategies. One parent reported that her child had shown real ingenuity by getting out of the grocery check-out line she was in, selecting his dad’s favorite cookies and ice cream, and returning to a line at another check-out counter to make his purchases. Another girl dashed from her classroom whenever the door was unguarded. She ran straight to the library or another classroom which had more books than were accessible in her own class.

Families volunteer what each child has come to mean to them as a person when asked Significant Life Experiences I Contribute to Others. Children who do not speak communicate complex and abstract thoughts, rich in meaning and purpose. In this section parents and others can express the depth of their relationships, sharing what matters most in their lives. The sister who completed this protocol had written a senior class essay about her brother, the most important person in her life, the one who daily gives her love and courage. She describes her brother as the one who reminds her to be true to her family’s values and faith. These respected contributions inculcate rightful feelings of competence and self-worth for the child and his/her family. Past successes support the children as they meet new and difficult challenges. The team is encouraged to identify the strengths of each child and to anticipate and appreciate their contributions in each setting.

I Communicate How I Feel provides spaces to describe eight of the strongest and most frequent emotions of children in this study--happiness, sadness, anger, excitement, concern, boredom, surprise, and self-respect. Many communication partners interpreted different messages from the same behavior. When children whine, their parents, aides, and educators have to guess if that means their children are sad, concerned, or just bored. One of the children’s parents reported that her child would “wring her hands” when she was excited and liked a particular activity. Another child, however, wrings her hands as a sign of concern and anxiety. At this sign the parents know immediately to lessen her tension by withdrawing the task or diverting her attention. When parents, aides, and educators understand how children express their feelings, whether through gestures, vocalization, or signing, they will experience fewer of the children’s “negative” behaviors. When the child’s frustration is lessened, so too is his/her acting out.

Children learn communication skills as social beings and are perceived as belonging to and identifying with those around them. My Social Graces Include greetings, forms of opening and terminating conversations (e.g. hi and bye, waves and smiles) depending upon their cultures. They also demonstrate social politeness, e.g. forms of “please” and “thank you,” which facilitate relationships with adults and peers. Children who use social graces contribute to enjoying others’ company.

Culture determines communication rules of children and their families. My Family Follows These Communication Rules recognizes the importance of not only using different languages, but also using different rules regarding nonverbal behavior and topics of discussion. In some cultures, persons show respect by not looking directly at the speaker while in other cultures direct eye gaze is expected. In some cultures, listeners may not reply without pausing to reflect on the importance of what the speaker just said. In other cultures, listeners presume they must reply immediately. Certain topics are more frequently used in some homes than others. Children with severe speech impairments often understand these rules whether or not they can demonstrate them. Reliable assessments and effective teaching take into account these cultural differences, as they affirm and incorporate these cultural determined practices (Cheng, 1996).

What Makes Me Laugh helps the team to focus on having fun and enjoying good times at home and at school. Humor is a delightful part of human relationships. “What makes a particular child laugh? How does he/she act silly? How does he/she make others laugh?” are three statements which tell about the child. Does a child recognize a favorite scene in a video by roaring with laughter whenever she sees that part? Not all children are comedians, but day to day sharing of jokes and joy is life enhancing. Some children wisely see the idiosyncrasies of every day and can communicate their jokes. One child smiled as he signed to his mother that her stylish torn jeans were “hurt pants.” A speech-language pathologist and parent of a son with autism (Harrington, 1999) writes, “Laughter nourishes our soul and helps us live longer. Laughter is tied to communication and stimulates our senses. Humor ...is...found in everyday life.” Valuing and encouraging children’s laughter everyday is valuing and encouraging important communication.

What I Like to Play tells how children communicate and entertain themselves and others. One statement asks if the child enjoys playing board games or computer games. Another statement asks about teasing. One child who does not speak was taking a bath one evening. Her mother, as she did every night, admonished her daughter that getting her face too close to the metal drain in the bathtub was very dangerous. As soon as the girl heard her mother’s warning, she smiled and moved her face closer and closer to the metal. Her eyes “danced,” as if making a game of her mother’s caution. Teasing, for this child, is making fun and playfully mocking her mother’s admonition. Play is also seen as children making their toy dinosaurs fly and toy cars crash. There the children imagine new stories. In play, they “replay” daily crises and create solutions. Play can be a wonderfully pleasant way to communicate with children. In play parents, educators, aides, and speech-language pathologists tease, follow game rules, and invent sequences, all in fun.

An entire section is devoted to How I Take Care of Myself. Children communicate when and where they hurt, when they are tired, what help they need in getting dressed, and when to use the bathroom. They make choices about what they want and need. At home and at school, they are increasingly self-sufficient. Our culture places a high value on independence, and children express that independence early in life. Team members become frustrated when they cannot understanding the children’s communication about their physical wants and needs at home and at school.

How I Initiate and Take Responsibility is an extension of children’s taking care of themselves and expressing their own interests. Initiating interaction, asking for help, and offering help are opportunities for children to develop relationships. They recognize that their communication and their actions influence what others do and say. Other people can become agents and help the children accomplish tasks. They also know that their actions have consequences, such as the boy who knew after he helped pass out the papers in class, he had to sit down and do his written assignments. This same child would play tapes for his mother as they drove home late at night. He stayed awake so that she would not fall asleep “behind the wheel.” Children who have speech impairments also make sacrifices. One girl’s mother described that many people treated her daughter like she was a “rock.” Since her replies were difficult to understand, people would make comments about her as though she was not there and did not understand. She had to repeat words again and again to make her messages understood. Without speech, the word-filled speaking culture often ignored her or assumed they needed to speak for her.

How I Get Along With Others involves communication in gestures, voices, glances, and words. Healthy relationships support communication development. Children show others whom they like and whom they dislike. They follow directions of some people better than others. They prefer doing things with certain people, such as working on the computer with dad. Sometimes they want to ask for more, and other times want to be left alone. When plans are being made, they can communicate their agreement or protest a particular person or activity. They take turns in many ways by exchanging looks, offering their gestures, voicing their permission, even waiting attentively. They may show they know how others feel yet at times they do not express that compassion. They communicate a willingness to negotiate, to develop the healthy “give and take” of relating to other people.

A child who does not speak must often demonstrate Ways I Show I Am Thinking without using words. People often have worked out a system of communication where a blink of the eyes means “I understand,” whereas closing the eyes means “no, I don’t know what you mean.” One girl raised her eyebrows rapidly to say “that’s right,” while raising just one eye brow was a way to ask for clarification. Another boy said “Oops” to show that he had made a mistake on his work. Being able to identify his own mistakes demonstrates an important thinking skill. Another thinking skill is understanding that a new problem looks like a similar experience the child had had. A boy’s eyes brightened when his mother told how he had settled a family disagreement about which video to watch. Children use their thinking skills to learn routines and thus to anticipate events. One speech-language pathologist commented that she had not seen a particular child demonstrate recognition of the names of familiar people, everyday activities, or familiar places. Yet the parents had seen this same child look at them and smile when they named her absent friend or talked about going horseback riding again on Saturday.

Children learn. When an activity or person is new, they need to investigate even if they cannot ask questions. Some learn best with their eyes. They learn by watching others. Others have to be told by someone giving and often repeating instructions. Still others have to learn by feeling with their hands, tasting, or smelling. Effective teaching begins with learning how each child learns best, how they construct their own meaning and knowledge.

In I Know My Timing Works Best, the children’s sense of timing is explored. The team members themselves can include timing differences as very real factors in teaching communication. Some students need extra time to think about what they see and hear. One girl needed as much as 60 seconds to get her thoughts organized and make a response. No wonder the educator had to call on someone else before the child could contribute her comment. Another boy seemed to get stuck flapping his hand over and over, stuck in repeating that movement until someone gently touched his arm. Most children verbally tell someone “I’m done, I want something else to do.” One child who does not speak closed her eyes to say she wanted to be finished, but her teachers thought she was just too tired and needed a rest. Sometimes a child needs a frequent change of activities, and other times he/she just needs to take more time to finish.

Human beings have good and bad days; even computers can be down some days. These fluctuations communicated in changes in attention and behavior may mean I Am Having a Bad Day. A child is just “out of it” because of increased seizure activity, constipation, a substitute baby sitter or teacher. Educators, aides, and speech-language pathologists fear that the child has forgotten or regressed because the child responds one day but not the next. Recognizing the importance of providing extra activities for communication on “good days” and relaxing demands on the “bad days” eases tensions and supports the children’s growing needs. As the team describes and uses successful ways to get the child “back on track,” they save valuable time and frustration, for the children and for themselves.

Ways I Have Begun to Read and Write stresses the importance for children to develop literacy before or at the same time as speaking and listening. When children with severe speech impairments cannot use spoken language, written language may be an essential tool for communication. They may have learned to read and write from seeing print in books and flyers, commercials on television, and products they use. They may need support in learning further skills at school. Children with severe speech impairments need significant class time each day spent on reading and writing. This priority and emphasis on literacy truly supports the children’s acquisition of language.

Frequently professionals assume that spoken language must be mastered before reading and writing can occur. In fact reading and writing can support the acquisition of many forms of language. Reading and writing enable a child to see words and sentences. Children demonstrate the beginning stages of literacy by recognizing that photos and graphic symbols stand for real objects. When one family drove past Baskin-Robbins ice cream store, the son protested unless his mother stopped. Another child faithfully put her backpack beside her name in the row of cubbies. An educator described her student as being happiest when he was writing names, copying math problems from the blackboard, and looking at books with words. His exploration of letters and words contributed to his development of literacy and language.

Sometimes children know and can point to letters in the alphabet. They write the first letter in a word or point to what word would best complete a sentence. Through writing and typing, some children can identify why they are agitated. One child with a severe speech impairment became upset because the day’s date on the chalk board was incorrect. When the classroom assistant gave him an alphabet/number board, he looked at the calendar and then pointed to “2-0,” the actual date. He had no other way to communicate his concern.

Arranging letters may begin by arranging pictures to tell a story. One child smiled as he sequenced the pictures from 101 Dalmatians in the proper sequence: first the family and dogs were happy in their home, then someone stole the dogs, the dogs got away from the thieves, they covered themselves with coal dust, finally the family was happy when the puppies returned. Building upon these literacy skills appropriately teaches language and communication.

What Augmentative and Alternative Communication Works For Me tells the team what ways the child communicates most consistently. The children may use their eyes, eyebrows, gestures, vocalization, facial expressions, signing, or pointing to cues around them. Sometimes this communication gets complicated, such as when one girl looked at her piggy bank on the dresser in her room. When her nurse picked the bank up and brought it to her, the student looked from the nurse to the bank to the flyer about a school performance. The nurse turned her attention also to the flyer containing the information about the performance, the date, time, and cost. She connected the child’s need to take money from the bank to cover the cost of the ticket for the performance. She asked the child if she wanted the nurse to get money out of the bank for the ticket. The student raised her eyebrows in agreement.

Once the team has identified how a child communicates, they finally look at the alternative forms the child uses to communicate consistently. These alternative forms may be using objects (such as the bank), photos (family members, food products), line drawings (signs and outline drawings), and/or printed letters and/or words.

Some children may be able to construct their messages through preprogrammed electronic devices. The child learns that a certain line drawing of a ballooon on a device stands for a balloon. When the child presses that symbol, the prerecorded voice in the device requests “Please blow the balloon.” One girl accessed messages on the computer by spelling words and sentences using the Morse code, which translated her dots and dashes into letters and pronounced the words. Parents, educators, aides, and SLPS using this instrument identify what alternative communication has worked. Computer programs, signing, and alphabet boards are simple and yet very possible ways to increase literacy and to augment the child’s most readable communication.

The team looks for the child’s most successful way of communicating. They also identify alternative ways of communicating that did not work, such as a switch with voice output, and suggest why it was not useful for the child. Perhaps the device broke easily and repairs were too costly and inconvenient. One child had a battery operated device, but the messages were too close together and the buttons required too much pressure for the child to activate easily. The team needs then to match the child’s needs and messages to other possible devices. Sometimes the child simply needs a way to express more complex messages.

The page which many people, myself included, may read first is the Summary of Communication. Here the team sums up the previous pages to complete four statements. (1) The child’s most consistent means of expression, (2) the topics of most interest and thus most motivating, (3) alternative communication preferences, and (4) the biggest communication need in class, academically and/or socially.

The section on the final page, labeled ESPECIALLY FOR PARENTS, asks four questions: (1) What communication behavior would you like help in stopping? (2) What skill would you most like your child to have, (3) What else would you like us to know about your child? (4) What is your greatest hope for your child in school this year? Parents find these open-ended questions an opportunity to fill in important information about their children’s communication and their uniqueness which the instrument may have missed. Projecting hopes and dreams is the best way to design a fulfilling, truly collaborative educational program for the children and the team. With these brief statements of the child and his/her communication, the team is now ready to plan the next steps of instruction.

Summary

For effective collaboration, parents, educators, and speech-language pathologists need opportunities for communication, interaction, and cooperation around the “real stuff” of children’s lives. With sensitive and accurate interpretation, they will know what interests them, what special “words” they use, and how they contribute to others. They recognize their feelings. Social graces and cultural differences will be understood. Their laughter and play will be enjoyed, as well as independent initiations and responsibilities in everyday relationships recognized. The empathy the children express will be appreciated by others who will know they are thinking. They will accommodate differences in the children’s timing. The number of “bad days” may actually decrease as the children are increasingly understood. Literacy will be developed as a communication tool. Alternative communication opportunities will be used at home and at school. Progress can be measured as the child increasingly communicates in their natural environment at home and at school.

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Who completes the instrument?

The instrument is designed so that parents, siblings, caregivers, educators, aides and speech-language pathologists each contribute to describing the everyday communication of children who cannot speak. When each person of a team completes the instrument, he/she can reflect on and offer unique insights. The team can obtain a comprehensive profile of the child’s functional communication by sharing their experiences and insights about the child as drawn from a wide range of situations with a variety of people over a significant period of time. In the process of triangulation, all persons strengthen the assessment and instruction as they accurately describe, compare, and thus validate their real life observations of the child. This combined picture provides an integral key both to the child’s current communication and to effective educational planning...

In completing the instrument, families and professionals will have an effective starting point to dialogue and collaborate on important communication and cultural differences. Parents actively participate as experts and informants, rather than reactants on a narrow range of school based topics. Other caregivers, such as siblings and baby sitters, who complete the instrument will contribute and see that their own point of view matters. Educational psychologists and occupational therapists are better able to support the children’s performance as communication partners as they co-construct the children’s messages once they have examined the vital and varied communication the child uses naturally in the home and elsewhere. Aides and substitute teachers also have a reference to support communication with each other around both academic and social issues.

We are beginning to see the same uses for caregivers of adults who cannot speak. The adults who cannot speak would include persons with degenerative conditions such as muscular dystrophy, Amyotrophic Lateral Sclerosis (ALS), Parkinson’s, and Alzheimer’s. Their care providers, as informed communication partners, can also create optimal communication opportunities, respond appropriately, and relate to their patients’ interests, strengths, and significant life contributions. Using the instrument, these caregivers can plan their interaction around the patients’ special interests, personal preferences, and prior communication patterns. The staff in health care facilities could use the instrument to evaluate the medical and emotional benefits of using and enjoying some alternative forms of communication, including reading and writing, and to evaluate the effect of medications on the communication competence of these adults.

How and when should the instrument be completed?

Referrals

The instrument is designed to be used as part of the referral process for special education services, for subsequent IEP meetings, and triennial evaluations. The team coordinator of the school district’s special education program will ask the parents to complete this instrument before the first meeting. This parent report serves to introduce the child to the other members of the child’s educational team, the educators, aides, and speech-language pathologists. This way the parent can, from the beginning, be an active contributor to the process of assessment and planning.

One of the ways the referral meeting might go is this. When the team meets, the person chairing the meeting begins by explaining the purposes of the meeting:

* share what the child communicates and describe the child’s natural communication,
* work as a team in order to assess current communication proficiency more completely,
* identify priorities, show respect for, and integrate cultural practices of the family,
* recommend further assessments, meaningful goals, and methods of instruction, including alternative communication and effective teaching strategies.

Teaching requires effective partnerships between parents, educators, aides, and speech-language pathologists. Only through collaboration can accurate assessments be made and effective teaching occur. Every child and every team will differ. Therefore the best interests of each child will be served only as members of the team support each other.

The chair monitors any tensions parents, educators, aides, and speech-language pathologists may bring to or develop during the meeting. As parents simply share their descriptions and other team members learn from and value their contributions, strains and hostilities are less likely to arise. The result is not only a cooperative attitude toward intervention, but also a more comprehensive assessment of the child’s natural communication. The goal is for the entire team to understand, agree upon, plan for, and support the instruction for each child.

The parents are asked to share their descriptions, statement by statement, category by category. Members of the team will ask questions to clarify descriptions, identify the most significant needs, and incorporate family practices and concerns from the start. Each participant is encouraged to share respectfully both responses and responsibilities. Prelock (1999) suggests appointing a “jargon buster” so that no one is embarrassed by having to ask for explanations and so that everyone uses vocabulary others easily understand. As the parents describe their child’s communication, the educators and speech-language pathologists take notes. They will jot down ways the child’s natural communication could be supported in the classroom activities. The speech-language pathologist will especially be aware of communication strengths and the most consistent way the child communicates. They will identify times when they have found the child’s communication to be most confusing.

When the child’s current communication proficiency has been described, the team can determine what and how to use the child’s communication as they adapt other test materials. For example, when they know how to interpret a child’s reliable yes/no response, they can ask multiple choice questions (Glennen & DeCoste, 1997) used in standardized tests.

The final step is to use the child’s communication in achieving communication opportunities and successes in the classroom. These results will be used in writing and implementing meaningful Individualized Education Plans built around real life experiences and the child’s interests, needs, learning styles, and most consistent communication patterns. The team members will not have to try to translate formal tests and developmental measures into classroom activities, a task for which these tests were not designed. The goals may not emphasize the production of the sounds of speech at all.

Educators, aides, and speech-language pathologists will then adapt the academic curriculum so the child can communicate using alternative line drawings or printed words. Because the descriptions are made collaboratively, parents will be less resistant. They understand and can actively integrate the child’s communication within their own daily activities. Educators, aides, and speech-language pathologists will focus their valuable educational time on accurately interpreting, then sensitively shaping and augmenting the child’s communication throughout the day.

Subsequent IEP meetings and triennial evaluations

For subsequent IEP meetings and triennial evaluations, the team coordinator can distribute the previously completed instrument and ask each team member individually to update the protocol before their next scheduled team meeting. The parents, educators, speech-language pathologists, and perhaps classroom assistants will individually write in their current observations and descriptions on the blanks at the end of each statement. They are told that these descriptions will be shared in the upcoming meeting as together they plan instruction for this child. As they read the statements and examples, they are independently to recall similar situations where they have observed the child communicate and to describe how the child expressed him/herself. They simply leave blank any statements they have not observed. Everyone contributes out of his/her own experience and expertise, offering what he/she knows. The team expects that the child’s parents have the most experiences to describe. The team looks for changes in the child’s communication from the previous assessment and notes increased uses and complexity of communication.

Responses from the various team members can be compiled into one summary form as is done in the Composite Summary at the end of this manual. This additional step is often not necessary because the content is discussed at the meeting. The team then can use the meeting time to review their individual responses and form their own composite summary. They can discover consistencies and inconsistencies, communication difficult to interpret by nearly everyone. Their planning for instruction begins with collecting an accurate description of the child’s current communication repertoire and discovering alternative communication and strategies the child already uses. Examples from each member of the team provide needed information about the child’s changing motivation, interests, and communication alternatives.

At assessment periods throughout the year, parents, educators, aides, and speech-language pathologists can refer to and compare the child’s current communication skills to those initial ones. This diachronic tool, a measure of everyday communication as it occurs and develops over time, provides a clear and continuous record of communication as it occurs in academic as well as social environments. Adding time lines can define responsibilities of adults and peers in responding to the child’s communication around favorite books, toys, videos, etc. They can also find alternative means the child could use, such as pointing to line drawings and words. Together parents and professionals not only track the child’s valued progress but also evaluate the effectiveness of the child’s communication program and project the use of needed resources.

How long does it take to complete this instrument?

The instrument usually takes about an hour to complete the first time. Some need more time to reflect on their experiences before completing it. Parents who have used this instrument, usually take the full hour because they have the most information and experience to offer. They state that they actually enjoyed working on it, contrary to some previous assessments they described as unfruitful, time consuming, and tedious. Parents believed that by using this instrument they were contributing to professionals’ ideas and efforts supporting their child. Based upon past experiences with sending forms home for parents to complete, the educators were concerned that parents would neither be willing nor competent to complete this form. My experience has been quite to the contrary. Parents of the children welcomed and very competently wrote their observations with detailed descriptions. They openly shared their experiences as members of their child’s team.

The sixty minutes completing this instrument will save hours of observations and duplication of tests. Professionals will be better able to interpret the children’s initial responses and build upon meaningful, known interests. Instead of spending significant amounts of time enlisting the children’s cooperation on unfamiliar tasks, professionals can use familiar tasks and get a better indication of the children’s natural communication, interests, and abilities. They will be familiar with these responses in classroom instruction. Time spent in obtaining a more complete profile of the child’s communication will save time in vocabulary and message selection for Augmentative and Alternative Communication (AAC) devices and will result in more appropriate initial choices of AAC devices.

Where should the instrument be used?

This instrument fits into nearly any setting. Information is gathered from whatever setting is natural to the children, whether they are at home, at school, in the hospital, or in the community. This instrument recognizes that children’s familiarity with the environment impacts what and how they communicate. This assessment includes home and school perspectives. In medical settings, the assessment of communication in the clinic would be vitally connected to the communication at home to which the patient will return.

Schools, as educational institutions where the children live and learn, are primary locations where the instrument can be used. However, the instrument can be used in designing home-based intervention programs which include children, parents, and speech-language pathologists. In hospital settings nurses, doctors, and other caregivers can use this instrument and better interpret the messages of children and adult patients with severe speech impairments.

How should the results be used?

The final result of completing the instrument together will be in planning instruction. Approaching intervention holistically (Poplin, 1995), professionals enable children to develop meaningful communication in real life situations. The team can identify purpose-filled activities in multiple settings as the children relate to important people in their lives rather than wasting time on repeated trials for individual wants and needs.

The team will delineate new roles of the child’s communication partners. Too often children’s conversations are dominated and terminated by the adults who do not understand them. As in a dance (Duchan, 1994), communication partners need to synchronize their movements with each other. The children and their communication partners must recognize the meaning of and allow for the other person’s unique communication style. Together they are sensitive to and adapt to each other’s cultural rules, understand and fulfill their rights and responsibilities in each conversation. Communication partners will respond to, direct, guide, comfort, inform, and praise the child’s real communication.

The team may redesign the child’s environment. Instead of relying on speech which the children cannot use, educators and speech-language pathologists can supplement the spoken language with alternatives the children can use (Beukelman & Mirenda, 1998). Some may benefit by learning to use sign language. Others need to have pictures and line drawings readily available to point to their messages. Still others can build on reading and writing skills. With many children, the team will need to explore the alternative electronic devices which speak messages these children most need. Together they can try out, locate, purchase, and plan strategies to use appropriate assistive technology. Each of these alternatives and needed strategies in everyday activities will be described in the child’s Individual Education Program and become authentic ways to teach.

This profile brings into focus the social and academic messages the child needs most and the symbols which seem most accessible and meaningful. Based upon these past experiences, the team can better recommend strategies and devices which enable the child to clarify his/her messages. Together educators and speech-language pathologists can support the children’s most easily produced communication in context and offer ways to augment and facilitate the use of alternative communication. Only with collaboration over time can the child build fluency in communication with multiple people on multiple topics.

The instrument becomes a vehicle for improving transitions children and educators experience when they move from one setting to another. The instrument is designed to become a guide to collaboration between the children’s new educators, aides, speech-language pathologists and parents. As they understand what and how the children communicate, the new team can begin to plan instruction for their students, maximizing their interests, augmenting their existing communication strengths, and using effective alternative communication.

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• 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.

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