The Eye of the Beholder

     "Those eyes! Your eyes are beautiful, Jessica!" said Maria, the special educator, as she knelt beside the little girl's chair. Jessica's eyes were indeed beautiful -- dark brown, framed by long black lashes, naturally large and then magnified by thick glasses. Jessica was sitting in an armchair which seemed cavernous for her small frame, with toys arrayed in front of her. Although she tried to conceal her interest, Jessica was intrigued by her two visitors. The ventilator that assisted her breathing made a rhythmic background noise in the living room of the quiet apartment.

      "We've talked so often on the telephone that I feel as though I know you," said Anne, the nursing coordinator, as she extended her hand to Jessica's mother, Sharon. Sharon introduced both women to her husband, Douglas.

      Jessica sat very still, listening to her parents talk. Occasionally, she raised a small toy with her thin arms, moved it to where she could focus on it briefly, and then threw it on the floor.

      "We'd like to tell you about our child care center and answer any questions you might have tonight, but we'd also like to learn about Jessica," said Maria. She waited a moment and then added, "Where would you like to start?"

      Sharon settled herself on the floor next to Jessica's chair, absent-mindedly picking up the toys and returning them to Jessica who immediately threw them down again. "Well, she's almost three years old," began Sharon, "but she doesn't crawl. She won't eat anything by mouth. In fact, she got an ulcer when one therapist had us withhold her gastrostomy tube feedings to get her to eat. I hated that. She signs a little, but mostly uses signs she's made up. She's been in the hospital -- a lot." Sharon sighed heavily.

      Jessica gestured to her parents as she slumped down into the big chair; it was hard to keep herself upright, much as she tried. Her father came over and helped her to the floor. She lifted her hands to about cheek-level and opened and closed her fingers. "You want your puppets?" asked Douglas.

      "She loves playing with her dad," Sharon pointed out.

      Maria and Anne joined the family on the floor as Jessica drew them into the play by offering them a toy and then accepting its return. "She's really a charmer," Anne beamed at her.

      Sharon gave a sad smile and responded, "We didn't know what she'd be like at first. They told us she'd been exposed to a virus in the womb--Cytomegalovirus, or CMV. I must have picked it up at work. She was so sick when she was born. She couldn't breathe and couldn't eat. She was in the hospital for months. She still gets pretty sick from colds and viruses in winter, but I know she wants to be with other children. When she can be off the ventilator for a little while, we take her to the park. She gets so excited watching the kids!"

      "We certainly have lots of kids for Jessica to play with," said Anne. "Maybe this is a good time to tell you about our program."

      The teacher and the nurse told Jessica's parents about their child care center at the University. "This is a new program we're really excited about," began Maria. "Our first goal is to provide quality child care that is accessible to everyone. Our next goal is to train other child care providers to work with the infants and toddlers who have complex medical needs-children like Jessica. We believe that being attached to machines doesn't take away a child's needs to play and explore and to enjoy other children."

      "And it sure doesn't take away a family's need for child care arrangements that they're comfortable with," added Anne. "By the way, we're open every day from 7 o'clock in the morning to 6 o'clock in the evening."

      "But you don't actually mix in children like Jessica, do you? Or are all the children handicapped?" asked Douglas.

      Maria explained, "Most of our kids are typical children. Some have special needs, although not quite like Jessica's. One child has lots of delays, but no diagnosis. One little boy has Down syndrome. Another has a genetic problem that has kept his weight very low, and his low energy makes it hard for him to keep up developmentally. We have come to think of children as being on a wide continuum of abilities, with every one of them somewhere on that continuum. Take Jessica, for example. She's really engaging. She wouldn't let us sit on the sofa and talk to you, ignoring her. She's pretty strong in connecting with people and creative in communicating. But her muscles aren't very strong, and her development there isn't as good. Each child needs something different from us, but they all need nurturing caregivers, interesting things to explore, and the chance to be with other kids their age."

Second Thoughts

      Maria encouraged Jessica's parents to try the child care center, but she did not voice her concerns about the program. The center had opened as part of a training program for child care providers to learn about including children with special needs. In order to establish a replicable pesonnel preparation program, the project team had chosen to hire care providers who met the basic state requirements, who could be representative of the staff employed at any community-based center. As a group, those hired had some training in child development and many years of experience working in child care. They had little prior learning or experience, however, in the special needs of children with disabilities.

      During the first several months, efforts had been focused on establishing consistent, developmentally appropriate child care for all children. Maintaining the quality of that care while gradually introducing children with special needs was more stressful than Maria had anticipated. The first children with special needs to enroll had relatively mild conditions compared to Jessica's. Although they were eager to serve children with disabilities, there were difficulties in putting that eagerness into skilled practice. The children often gave confusing cues and the staff tended to keep children with special needs separate "to protect them" from the other toddlers. Staff members were ambivalent about applying the extra training they were being offered in typical and atypical child development. Sometimes they hinted that the training sessions were "too academic" and not about the "real world" of child care. Most frustrating to Maria and the project team was the staff's hesitance to use the team's consultation suggestions for blending specialized techniques into daily routines.

      Maria discussed these concerns with Anne during the drive home. She wondered aloud whether the staff was prepared to fully include a child with needs as complex as Jessica's. Anne shared her unease and raised another concern of her own. "We need to find out if Jessica is still shedding the virus and if that poses a health threat to the other children, their parents, or our care providers," she said.

      Anne began a thorough study of CMV the next day. She found that all of the published health guidelines concurred -- there is no reason to exclude a child with CMV. The literature indicated that staff must be trained in correct hand washing and other infection control procedures and must use them scrupulously. Anywhere from 40% to 75% of the children attending any child care center carry this. Anne and Maria were relieved that Jessica could be safely enrolled.

      Resolving this issue had taken time and Jessica's mother, her interest piqued, was now becoming impatient. "Are you going to take my daughter or not?" she pressed during a telephone call. "We certainly want her," Maria reassured Sharon. "Please come and visit our program and let's decide how best to get started."

      Sharon came to see the child care center. The rooms were bright and cheerful. The children were busy playing, and it was not readily apparent which children had special needs.

      In Maria's office, they had an enrollment interview. The toddler room's head teacher, Penny, was present to answer questions about her classroom. As the meeting proceeded, Sharon became more and more enthusiastic.

      "This is really exciting -- the idea of Jessica going to school here. All she ever does is go to Gramma's house or the hospital. Sometimes she can be off the ventilator for a little while and we can take her to the park. She loves to watch the kids. She has a sign for 'kids'." Sharon eagerly showed them the sign and then her smile suddenly faded. After a brief pause she continued, "It's so different with a child like her. I'm always taking her someplace medical--getting fitted for braces or seeing another specialist. But for me, going to the therapist is not like other mothers who take their little girls to ballet lessons."

      "No, it's not," Maria agreed.

      The head teacher was more positive, "This will be different. She'll be here just like all of the other children. You'll be surprised."

On the Outside Looking In

      Penny's optimism reflected how she and the other care providers believed they had integrated children with disabling conditions. However, the project's inclusion efforts had met with only partial success so far. Maria had attempted to be the conduit for information between the care providers and the professional support team, but the messages coming both ways often seemed to get lost. For example, after consulting with the project's physical therapist, Maria presented some positioning ideas to help a child with Down syndrome increase her muscle tone, but staff often seemed too busy or too forgetful to implement these suggestions. The speech-language therapist had also made a suggestion to Maria that a "sign of the week" be posted to encourage the use of an alternative communication system, but again the care providers seemed unable to incorporate it. Furthermore, they did not document the carefully measured feedings or provide the quiet, one-on-one interactions that Maria, after consultation with the project nurse, felt were so important for a toddler with failure-to-thrive. The project team was repeatedly surprised by the care providers' skepticism toward therapeutic interventions.

      Despite the inconsistent delivery of special services, Maria saw clearly that Penny and the other care providers loved all the children. They hugged them and talked to them and the children with special needs were treated no differently in this respect. The warmth and good intentions of the care providers combined with the chance to be with peers, whose activities were so fascinating, was irreplaceable. Maria continued to consult with staff about the benefits of therapeutic interventions, but for now their simple eagerness to include children with special needs and their basic caring attitude were of fundamental importance. Maria still worried whether Jessica's complex needs would be too taxing for the program, but she and the transdisciplinary team were increasingly impressed by the healthy effects of the staff's positive, caring attitude. As head teacher, Penny confidently reassured both Maria and Sharon that Jessica would thrive because, "She just needs to be with the other kids."

      Jessica started attending the child care center. The care providers, who had taken other disabling conditions in stride, found this child frightening. Jessica didn't help matters out when she pulled apart the ventilator tubing, setting off the alarm. This met with their immediate and undivided attention. Jessica couldn't make any sounds and for days would only sign "naughty nurse." She seemed fragile and thin and not nearly strong enough to play with toys or participate in activities. There was worry that they might inadvertently harm her, so the care providers subtly drew a circle around themselves and the other children, leaving Jessica on the outside. If Jessica was ready for a tube feeding, the other children's lunches were delayed and they were kept outside until Jessica was finished. Jessica's cot was set up in an alcove, away from the other children, so that, "she could rest undisturbed." She was rarely touched by the other children or interacted with playfully.

      "This is not inclusion!" Anne complained to Maria. "Jessica isn't getting anything out of this that she wouldn't have gotten at home. This is worse because she's being made to feel different here."

      "I know," agreed Maria. "She's been here for three weeks and I've been trying to let everyone get comfortable. I'm meeting with Penny and the rest of the staff today. I believe we can work it out."

      At the meeting that afternoon, the care providers assured Maria that they loved having Jessica in their room, "She's no bother at all."

      "Maybe that's what I'm having trouble with," said Maria. "Perhaps you should be seeing her needs as problems to solve. Let me explain. You know that we wanted to bring Jessica into our child care center because of all the good things she can learn here. What she really needs to learn is that she is just like other children in many ways. She'll only learn that if we let her really be with the other children."

      Maria went on, "For example, I've noticed that you never let the children eat at the same time that Jessica is being fed. But you know that all of the children enjoy the social aspects of sharing a meal."

      They thought about that. "I guess that's true," said one care provider. "I don't think we meant to keep her away, though."

A Change of View

      The care providers were surprised and sobered as they realized the many ways in which they were sabotaging their own efforts toward inclusion with Jessica. First, they began to understand how frightened they were of her alarms and machinery. Over several weeks of talking and consulting with the professional team, they began to believe that she would not "break" as they helped her settle in to a well-supported position. Jessica even surprised Penny by signing "eat" to her one day as she began to receive her tube feeding seated at the low table, next to other toddlers eating their lunches.

      Jessica was interested in the changes starting to take place, but she was still not very responsive. The more she was included, the more closely she watched the care providers and the other children, but she made few attempts to actively join in the activities. Meanwhile, those huge brown eyes drank in everything.

      The impact on Jessica was revealed at home first. Sharon would bring her to the center each morning bubbling with news. "She signed to us last night to sing your songs, 'Twinkle, Twinkle Little Star' and 'The Itsy, Bitsy Spider.' We sang them over and over. It was great!" One day she reported, "Jessica pulled herself up to stand last night! I couldn't believe it!" Another morning she announced, "We went to Gramma's on Sunday and Jess signed 'No, I want school!' "

      As the care providers realized how much their program meant to Jessica, they began to look for more ways to include her in all the activities. They requested advice from the transdisciplinary team. Maria worked with each professional and conveyed their information back to the care providers. Penny learned to support Jessica's back during music time so she could sit up and be more alert. Jessica fought her at first, but then stopped struggling and happily joined in the finger-plays. The care providers requested a class in sign language from the speech-language therapist and began to sign with Jessica. When Jessica showed interest in an activity, they helped her to do the activity herself. Jessica began to think of herself as one of the children. When the children put on their jackets, Jessica insistently signed "outside" to the care providers. Jessica brought her own puppets from home to use at circle time. Jessica was able to put stickers on paper to make pictures. To build on this skill, Penny bought clear contact paper for the base of a leaf collage. Jessica was delighted. After watching her friends for awhile, she even worked on gluing papers together. Despite receiving her food through a gastrostomy tube, Jessica handled crackers and cups of juice at snack time --just like her peers. A couple of times she even brought food to her mouth which was a big step forward. She began to play with toys and puzzles near the other children, and she tried to take toys away from them and fought to protect her own.

      Late one afternoon, Maria and Anne sat in the staff office and marveled at Jessica's growth as well as that of Penny and the other care providers. They had learned to combine good intentions with the ability to use transdisciplinary consultation. As they returned to the classroom to see Jessica playing intently with the others, Maria commented, "Those beautiful eyes! Boy, do they shine!"

This case story originally appeared in McWilliam, P.J., & Bailey, D., (Eds.). Working Together with Children & Families, Case Studies in Early Intervention. (1993). Baltimore: Paul H. Brookes Publishing Co.

The Eye of the Beholder
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