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The National Consortium on Deaf-Blindness

Reprinted with permission from: Chen, D. Effective Practices in Early Intervention, Northridge, CA 1997.

Effective Practices In Early Intervention

Infant Vignettes

Jose
by Pamela Haag Schachter, Kathy Goodspeed & Patty Salcedo

Jose, a small, cuddly 17 month-old toddler is attending the center-based early intervention program in his community for children with visual impairments. Born at 26 weeks, Jose is completely blind in his left eye and has light perception in his right eye due to Retinopathy of Prematurity, Stage V. An Auditory Brainstem Response (ABR) test, completed while Jose was hospitalized following his birth, revealed a mild to moderate hearing loss in his right ear. Jose battled many other complications of extreme prematurity, and though his health has stabilized he has just been diagnosed with a seizure disorder, about which mother is quite concerned.

Jose is very active, enjoying rolling, rocking on all fours and sitting independently. He reaches for toys and people and searches actively for objects while lying on his stomach. Jose has a very soft cry, which is thought to be due to vocal cord damage from when he was intubated as a newborn. He will play reciprocal movement games with adults; he makes raspberry sounds, kicks his legs and is beginning to imitate the sign "MORE" through coactive signing. Jose likes light and will roll toward windows and other strong light sources. He responds to his name being called within five feet and cries when the neighbor's loud air conditioner turns on. Jose prefers toys that are musical. Jose often sits in chairs with his head turned completely to the right, with his left ear facing outward. Jose likes other people and has a very easygoing personality. He loves tickling, gentle roughhousing, and swinging. He does not like to touch objects. Jose eats pureed baby food and is very resistant to changes in taste or texture.

Jose's mother, Alicia, told his teacher, Paula, that her current priorities are to stabilize Jose's seizures and to carry her current pregnancy to full term. She is also concerned that Jose is not talking yet. Paula shared the team's concerns about Jose's hearing. These issues were recorded on an Action Plan.

Alicia agreed to observe at home to determine the circumstances in which Jose seemed to hear her and those when he did not. Paula decided to conduct a functional hearing screening at school using the HEAR Kit. They agreed to meet in a month to compare observations and write a summary of their findings. If indicated, they will use the information to request a formal hearing test for Jose. Additionally, Alicia agreed to call the pediatrician and request a referral to a neurologist. If she has difficulty obtaining a referral, the teacher will help her request funding from the Department of Developmental Services.

At a subsequent meeting with Maria, the speech therapist, Alicia discussed her concern that Jose is not talking yet. Maria explained that encouraging Jose's communication through gesture, signs and objects will help his development of language and hopefully speech. Together, they completed the Communication Options Worksheet to identify appropriate ways of communicating with Jose at this time.

Analysis of the form revealed that Jose could possibly use spoken words, tactile (co-active) signs, object cues or touch cues to receive information and sounds, signs and gestures or objects to express himself. The team developed communication strategies to be used at school. Alicia agreed that she would like to try similar strategies at home after Jose began using them at school and she had given birth to her next baby.

The team decided to use a variety of strategies to help Jose understand what is happening around him and express his wants and needs. Object cues were selected, to be paired with words, to help Jose anticipate what will happen next in his day. Jose has the motor skills to pick up and handle the objects and is not likely to be afraid to explore familiar objects. Moreover, objects can be understood tactilely and do not require any vision. The teacher built a daily activities system for Jose on a low table next to the cubbies at the entrance to his toddler classroom. Cardboard boxes were glued together, and a coffee can was chosen for a "finished" box. Jose smiles when he hears things drop into the can and he feels the vibration. The list of objects chosen and their meaning is attached. Jose will be carried or encouraged to roll to his activities box before the start of each new activity. He will be helped to feel the outside of the box and to retrieve the object. Jose also will be helped to carry the object with him to the activity and return it to the finished box when the activity is done.

In addition, the team decided to target six signs that Jose could use to tell people what he wants and to understand that others want to tell him something. The words chosen were MORE, UP, EAT, DRINK, FINISHED and MUSIC. The team believed that these were words that would be motivating to Jose to use to obtain desired objects and activities or to signal his need to end an activity. All signs and object cues would always be paired with clear vocal cues directed to Jose's better ear. His sounds and vocal play would also be reinforced. An analysis of Jose's snack routine was completed to determine how to maximize communication opportunities within this activity. The Routine Analysis was shared with Alicia, who agreed that she would like to try something similar at home a few months after the new baby has been born.

Although questions remain unanswered about Jose's hearing, the team was able to develop effective strategies to promote communication development. Those strategies will be revised as the child grows and develops, new medical data are received, and functional assessments are completed.

Darin
by Pamela Haag Schachter & Judith Harris

Darin is a 32 month-old toddler who has been receiving early intervention services at home since he was nine months old. Darin and his three brothers live with their aunt, Lucille and her three teenage children. Darin was seven months old when he and his brothers came to live with Lucille. Lucille is attending school and managing a very busy and loving household. A central part of the work of the household is caring for Darin, who has multiple disabilities.

Darin was prenatally exposed to cocaine and marijuana. He had meningitis at three months and head trauma and meningitis again at seven months. As a result, Darin has a profound hearing loss, a cortical visual impairment, cerebral palsy and a controlled seizure disorder. The most difficult aspect of caring for Darin is that he prefers to be left alone, lying on his back or in his bed. He cries and thrashes his arms and legs when held or touched. His family has worked very lovingly and consistently to help him tolerate being touched, and moved. Darin has progressed to cuddling with his aunt and tolerating an entire hour session with his early intervention teacher, Jennifer.

Most intervention with Darin has been focused on helping him tolerate being touched and positioned. Jennifer has worked primarily with Darin in her lap, using a firm touch and gradually increasing the amount of time he is held.

Jennifer has found that Darin is very interested in toys with lights. He follows them visually if they move and has begun to reach for them. Using a variety of interesting lighted toys has helped to distract Darin and increase the amount of time he will tolerate being held. Darin eats in a high chair with a seatbelt and foam pieces at his sides to keep him supported. He has a custom-fit wheelchair, but because he begins to cry and thrash around as soon as he is placed in it, he has spent very little time in the chair. When placed on the floor or a bed, Darin will immediately roll to his back. He can scoot on his back from place to place, usually moving until he is trapped by a large piece of furniture. When left alone, Darin plays with his hands and feet and sucks on both. When he is very frustrated, Darin will chew on his wrist where a thick callous has developed.

Darin loves to eat and drink. He drinks from a bottle which he has begun to track, usually reach for, and hold himself. He eats large amounts of soft mashed foods fed to him by spoon.

Lucille and Jennifer met to discuss Darin's progress. Lucille began by sharing with Jennifer her frustration that the school district has been asking her to bring Darin in for assessment appointments at times that she is in school. Lucille also said she was worried about Darin's resistance to using his wheelchair which she knows he will need in preschool. Jennifer began to note the concerns in an Action Plan. Together, she and Lucille discussed what they could do about each problem. Though Darin's irritability has improved since he was a baby, Lucille was worried about how he will handle new teachers and a new school. Finally, Jennifer mentioned her concern that Darin might be able to benefit from hearing aids and encouraged Lucille to consider a trial period of using them if they were prescribed. Jennifer described how Darin might get a lot of pleasure from hearing noise and possibly people's voices.

Jennifer and Lucille met again the following week to complete a Communications Options worksheet for Darin. Lucille felt very frustrated, because whenever she had tried to help Darin sign EAT and DRINK he screamed, pulled away and bit his hand. The communication options worksheet showed that at this time coactive signs would not be a good choice for telling Darin what is going to be done to him. Darin resists having his hands held for any length of time. Lucille and Jennifer agreed that a few firm touch cues, made on bony parts of Darin's body would be a good way to tell him that he is about to be touched, picked up, dressed, and so on. They hope that as Darin learns to anticipate what is about to happen, he may not get as upset, even if he really does not like the activity.

Lucille and Jennifer discussed how frustrating it must be for Darin to never be able to make a choice about what he wants to do. When he is unhappy Lucille tries many different ways to please him. An Intervention Plan was developed to clarify ways that Darin could express himself by making a choice. Jennifer suggested taking advantage of Darin's newly emerging visual skills and willingness to briefly hold objects and use a few object cues with Darin. They chose objects to represent "eat," "drink," "toys with lights," "bed," and "lying on the floor." The objects will be given to Darin to see and touch before doing the activity and at times when he can make a choice of activities. The objects will be presented with extra lighting, either sitting on the light box, or under the light of a large floor lamp in the family's living room. Objects were chosen for their bright colors and black tape was added to his bottle in a crisscross pattern to increase its visual appeal. Jennifer completed a Routine Analysis of Darin's feeding times (one of his favorite activities) to help Lucille see all the opportunities for communication during meals and snacks.

Darin's transition to preschool still lies ahead, with a great deal of uncertainty as to how ready he will be for the many changes. Lucille feels that she has taken as much control of the process as she can and that the work she and Jennifer are doing in the area of communication will help Darin's preschool program be able to better communicate with him.

Sara
by Pamela Haag Schachter & Kathy Cardinal

Sara, a 34 month-old toddler who has a diagnosis of Trisomy 13, is about to make the transition from home-based early intervention services to preschool special education services. Sara's development is extremely delayed and she has vision and hearing losses along with several unresolved health issues. The most serious of these are her uncontrolled seizures, recurrent pneumonia, scoliosis and frequent choking due to reflux.

Sara lives with her parents, Mr. and Mrs. Smith, and her older sister, Emily, who enjoy the support of a large and caring extended family. Sara's mother cares for her daughters full time. Sara's many medical, therapy and educational appointments require careful scheduling and effort to ensure time for Emily's after-school activities and play dates. The Smiths are active in their church and find a great deal of personal support there. Mr. Smith's job provides medical insurance that covers most of the costs of Sara's care. Unfortunately, the insurance coverage for physical therapy and in-home nursing are about to run out. The Smiths are aware that they must apply to state agencies to have these services continue after insurance funding ends.

As Sara's third birthday approaches, her family's stress level increases. Aside from the practical concerns of paying for nursing and therapy, finding an appropriate preschool placement for their daughter, and getting to know and trust new service providers, the Smiths fear that Sara will die. Mr. and Mrs. Smith were told when Sara was born that most babies with Trisomy 13 do not live very long. Each decision about medical care, educational services, and basic parenting is colored by this information. They are very concerned that attending preschool will expose Sara to many more infections, one of which could prove fatal.

Sara's county early intervention team met with her parents to write an Action Plan to address the many practical issues and personal concerns that the Smiths are facing. The team included her parents, her early intervention teacher, the school nurse, the teacher of children with visual impairments, the physical therapist and the Developmental Services coordinator. Although all of the team members have been working with Sara for at least a year, they had never all met together to discuss Sara before this meeting.

At the meeting each person expressed concerns about the upcoming changes in Sara's intervention services. Each question or major area of concern was listed on the Action Plan, along with the action(s) to be taken to begin addressing the question or concern, the person(s) responsible, and the time frame for action. The team acknowledged that the action plan lists many more questions than could typically be addressed at one time. Due to Sara's imminent transition, and the acknowledgment that the family may have difficulty getting to all the items, the team divided the concerns into lists of family priorities and school priorities. This was done to acknowledge that the family may have difficulty getting to all the items on the lists. Although there are many tasks to accomplish, everyone on the team agreed that the entire process was less overwhelming once it was written as an Action Plan.

At a subsequent meeting between the early intervention teacher and the Smiths, an Intervention Plan was also written. Using a top-down approach, the teacher and parents identified their desired outcome, i.e. for Sara to receive preschool services in the least restrictive environment possible, while maintaining the best possible health. They identified the obstacles and strengths that would affect reaching the desired outcome. They generated a list of strategies they would use to help them identify the best possible educational placement for Sara. The actual intervention plan, was completed after Sara's IEP meeting was held and the Smiths had had an opportunity to use the strategies they had generated to make the best possible choice of preschool placement for Sara. The Smith's felt that had they not used this planning process, they would have only noted the obstacles to Sara attending school. Identifying her strengths encouraged them to identify an appropriate school placement and to take some risks so that Sara might benefit from being around other children.

Henry
by Pamela Haag Schachter & Dorothy Bridge

Henry is the child of immigrant parents of Chinese descent. Mr. and Mrs. Li are both college educated and work in the computer industry. Henry's premature birth at 27 weeks came as a great surprise. Henry was hospitalized for the first 6 months of his life. He came home from the hospital with oxygen and a heart monitor and diagnoses of Retinopathy of Prematurity (Stage 3 in one eye, Stage 4 in the other) and a suspected moderate-to-severe hearing loss. Mr. Li's mother, living with the family, provided Henry's daytime care, as Mrs. Li returned to work when Henry came home from the hospital.

Early intervention services began immediately. An occupational therapist came to the home once a week and Margaret, a teacher of children with visual impairments visited twice a month. The initial intervention challenge was communication. Grandmother Li speaks no English, and the interventionists speak no Cantonese. This problem was resolved by evening phone calls and written notes left for the parents. This solution caused a great deal of stress for Mrs. Li as it put her in the position of telling her mother-in-law how to care for Henry. The family had had no previous experience with children who were as fragile as Henry, in their home country he would never have been released from the hospital. In this family, the grandmother is expected to be the expert on child rearing. Henry's health problems and disabilities forced a renegotiation of many family roles. Grandmother Li worked very hard to care for Henry and to learn to handle monitors, oxygen, feeding techniques and a hearing aid. Henry had a very poor appetite and fell asleep during feedings from the effort of eating. Grandmother Li worked tirelessly to feed Henry, and through her efforts Henry is now an enthusiastic eater. Mr. and Mrs. Li struggled with their own roles in parenting a fragile baby. Not being Henry's primary caregivers, they had to work even harder to be comfortable holding, feeding, changing and nurturing their son. They required a great deal of encouragement to ask questions about Henry's problems. Mr. and Mrs. Li had had no previous experience with people with disabilities and needed time and support to be comfortable talking about Henry's multiple disabilities. Henry's lengthy hospitalization increased the already large financial pressure felt by his parents.

When Henry was 13 months old additional hearing testing, both electrophysiological (Auditory Brainstem Response) and behavioral observations, determined that he had only a moderate hearing loss in one ear. The pediatric audiologist did not recommend a hearing aid and provided the interventionists and family with specific techniques to teach Henry to attend to speech. At this time, Henry was being cared for by his aunt, a very child-centered and bilingual (English-Cantonese) caregiver. The audiologist's recommendations included having Henry feel the speaker's throat, finding toys that make a variety of pitches and sounds, exaggerating the inflection in words, facing Henry when talking to him, and giving him enough time to respond. Finally, the audiologist suggested picking one language, either English or Cantonese to use with Henry during this initial period of teaching him to listen. Since all family members could not comfortably speak English, Cantonese was chosen. Henry's language skills have continued to grow, especially given his early prognosis. At 35 months Henry now speaks in two to three word sentences in Cantonese. Henry loves to tell people what to do, demand food, and have tea parties. In English, which was reintroduced at 18 months, Henry uses single words.

Henry's vision has remained fairly stable. Glasses were prescribed for his nearsightedness, but he refuses to wear them, preferring to bring objects two to three inches from his eyes. At home, in a very familiar environment, Henry is able to see up to 12 feet away, under best conditions. His visual field is restricted, and he depends on movement and auditory cues to help him gain information about objects.

Henry's gross motor skills have been the slowest of all his developmental areas to progress. After a year of pleading from his early interventionist and family; his pediatrician made a referral for medical evaluation of his motor skills. Subsequently, Henry was diagnosed as having cerebral palsy. His sitting balance has improved since he began receiving physical therapy. This newest diagnosis has been the hardest for Mr. and Mrs. Li to deal with emotionally. Presently, Henry's inability to walk is the most overt sign that "something is wrong." The entire Li family has worked very hard to help Henry thrive, learn and develop new skills. The success of their past efforts is encouraging them to participate actively in therapy and to search for an appropriate preschool for him.