How can parents and professionals use the protocol?
CSHA handouts 2013

Overview of The Protocol

The overview of the protocol is in chapter 1 of Augmentative and Assistive Communication with Children. The theory and the intervention plans support participation across environments and with communication partners.

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.