Shaping Ben's Future

    Sam and Amy arrived at the preschool promptly for their morning meeting to talk with Kate about school programs for their son, Ben. The couple sat side by side in the chairs opposite Kate. Although Amy was ordinarily a little shy in formal meetings, she appeared unusually nervous this time. Sam looked quite serious, and he was the first to speak.

      "We've been thinking hard about kindergarten for Ben next year," Sam began. "We know he has disabilities, and we see all the things he can't do. He can't walk, he doesn't have much language, and he still wears diapers. But we also see how much he's gotten out of being in a class with regular four-year-olds this year. Ben knows how to get somebody's attention to play, how to take turns at snack time, and how to stick up for himself when somebody's giving him a hard time." Sam paused and turned toward Amy, who nodded in agreement. Then he turned to face Kate again.

      "He sure seems to understand what's going on when the other kids are talking to him. I wish he'd do that well when I ask him a question," Kate added with a laugh.

      Kate was Ben's teacher and had known him and his parents since Ben was four months old. Ben was born almost three months prematurely and had spent the first three months of his life in the hospital. He had been enrolled in early intervention programs from the time he was well enough to go home. Now four and a half years old, Ben has moderate to severe cerebral palsy and is on several medications to control his seizures. Although the physical therapists and his parents worked to teach Ben to walk, it was so difficult for him that he now uses a wheelchair. This seems to suit Ben. He likes being wheeled around by his teachers and peers rather than working so hard to walk. Later he might get a chair with a motor he can steer -- when he can do it safely. Ben currently attends a preschool program that integrates children with disabilities with typical children. This past year, Ben has been trying to improve his communication with the other children in his preschool class. He loves being with the other children and really wants to play with them, but it is hard work. He cannot get around the classroom the way they can; they talk too fast and their games are very confusing for him. In fact, it is much easier for Ben to play with two-year-olds, but he doesn't think it is nearly as much fun.

      "We've been coming to the parent meetings here at Ben's preschool for awhile," said Amy in a soft voice, "and we've listened to lots of people talk about what's happened when their children entered kindergarten." She glanced quickly at Sam and he returned a nod of support. "We know that there are some kids with disabilities like Ben's who have been integrated into regular school programs," she continued, "but not in our district. And we've listened to parents who are really happy with their children's placements in a special classes. You never know how things are going to work out, but Ben's done so well here this year, and he gets so much out of being with typical kids his own age that we think we should see if he can go to a regular kindergarten next year. We don't know what it'll be like. We're sure it won't be easy, but we want to try."

      "I agree that a regular kindergarten class is something to think about for him," said Kate, "but you know the therapists he sees here usually do therapy in the classroom. That would probably be a lot harder to arrange in kindergarten. He gets occupational and physical therapy four times a week and speech-language therapy every day. It's also hard to know how the school staff at a regular kindergarten will feel about having him there. Around here, most of the children with disabilities like Ben's are in self-contained classes at the Cooperative. The Co-op schools only serve children with identified disabilities, so they have all the resources that children like Ben need right at the school. The folks at Crestland Elementary probably won't know what to think if you bring up the idea of having him in a regular kindergarten."

      "I guess you're right," said Amy. "But we'll never know what would have happened unless we try. It's what we think would be best for him."

      "He's going to have to learn to cope in this world when he gets older," added Sam, "and other kids are going to have to figure out how to get along with him. It seems to us that school is the place to start."

A Supportive Voice

      "You know, the school district's Psychologist, Bill Frank, is going to be really surprised when he hears that Ben's parents want him to go to kindergarten next year" said Kate. "He just finished his evaluation of Ben and he's already talking about enrolling Ben in a class at the Co-op Center. He won't know what to think when he hears that Sam and Amy want to enroll Ben at Crestland." Kate was meeting with Jackie, the director of the preschool, to decide what to do about her conversation with Ben's parents that morning.

      "On the one hand, I agree with what Ben's folks have said about him," continued Kate. "Ben does enjoy being with his peers, and he has made a lot of progress this year. He's very social, and I do think that some of his progress has been from watching and playing with nondisabled children his own age. He certainly gets lots of reinforcement for using his communication skills with them. On the other hand, Ben has so many medical and therapy needs that it's hard enough for us to coordinate all of them--and we've had lots of practice. It'll be really hard in a regular kindergarten with 25 other kids, even if he could get an aide for part of the day. And we're trying to maintain a good relationship with Bill Frank and the other folks at Crestland Elementary.... Well, I just don't know what we should do. I'm not at all sure that they're ready to think about having a kid like Ben in a regular class."

      "I don't know what the answer is," replied Jackie, "but I do know that we've always tried to give parents enough support and information to come up with a plan that would meet their family's needs and their child's too. Ben's folks have always been supportive of him, and it couldn't have been easy for them. Did you know their older son, Jake, is in first grade at Crestland? They must know something about what they're getting themselves into."

      "At least the building's fairly new, and all of the classrooms are on one floor," added Kate. "Amy said she was going to return Bill Frank's call this afternoon. He wants to review the results of his evaluation with her and Sam and start thinking about a placement for next year. Boy, he's going to be surprised when he hears about kindergarten!"

      "Did you tell Amy that we'll be happy to be there when she and Sam meet with the folks from Crestland?" asked Jackie. "You know, if this is what they really want, we should see if we can't help figure out a way to make it work."

      "I'm so glad to hear you say that!" replied Kate.

Meeting Obstacles

      "Jackie, what is going on here? I thought we had come up with a reasonable plan for Ben, but his parents aren't being realistic!" exclaimed Bill Frank over the telephone. He had obviously heard the news. "I've talked with the staff here at Crestland," he continued, "and we all agree that we might be able to compromise and try having Ben in our self-contained class here. He could be mainstreamed with the kindergartners twice a week for art. But his folks want him in kindergarten full-time!"

      "Yes," said Jackie, "I just heard about that myself, and I thought...."

      "I don't know how we could possibly have him in a kindergarten class," interrupted Bill. "We have nowhere near the number of staff we'll need and the teachers will be up in arms! It's hard enough finding physical therapists and occupational therapists for kids in classes at the Co-op Center. I just don't see how we could come close to providing the therapy he'll need if he goes to school here. Honestly, I can't imagine what his parents think Ben's going to learn in a regular kindergarten. The kids in those classes are working on letter sounds and learning to read. Let's be realistic. Ben can only say about 15 words. Oh, I know his parents say they don't care if he learns the alphabet, that their goals for him are to learn the routines, be as independent as possible, and get along with the other kids. But that's not what school is for. He needs to start learning the pre-academics he'll need to cope in the world, and that's what they work on in the Co-op classes. He'll learn something there! You've got to talk with them, Jackie. They won't listen to me!" Bill finally stopped his tirade and waited for a reply.

      Jackie knew what Bill wanted her to say, but she also considered her allegiance to the family. She took a deep breath and began, "Bill, I'm not sure how this would work. I know the kids in the Co-op learn a lot. The problem is, nobody around here has ever tried integrating a child like Ben into kindergarten. People at other places say that it can work well to have kids with disabilities like Ben, in regular classes, if you provide the right kinds of support for the classroom teachers."

      "Yeah, but that's a big 'if'," said Bill. "Our budget's at the limit right now, and other parents won't like the idea of Ben getting all those services, even if it doesn't cost us any more than sending him to Co-op. You know, when kids are at the Cooperative, nobody sees the number of teachers or therapists providing services to the children. But when there's a kid like Ben at Crestland, everybody will see what's happening. There are lots of folks who might not like the fact that we're spending all this money on him while we're cutting a gym teacher!"

      "I know it's a problem," agreed Jackie, "but it's one that we're all going to have to face sooner or later with a lot of kids. You know that Amy and Sam have been thinking about Ben attending a regular kindergarten class for a long time. They know he's not an easy kid. If we don't deal with this issue now, it'll keep coming up. What do you think, Bill? Can we can get together with Ben's parents and Kate, his teacher, and at least talk about this?"

      There was an uncomfortable silence followed by a long sigh on Bill's end of the line. "All right," said Bill, "I suppose we can talk about it. Let me know when you can set up something. I'd like to get this straightened out and come to some sort of agreement before it's time for his committee on special education meeting and annual review. There's nothing worse than involving a whole school committee in a conflict over a placement for a kid. Why don't we meet at the preschool?"

      "Thanks, Bill. I'll arrange something right away."

      "I'm sure they'll think I'm awful because I think Ben needs a special education class," Bill added. "It's just that I know a regular kindergarten class is not what would be best for Ben. If they could only be made to understand...."
 

Meeting The Opposition

      "You know what's going to happen, don't you? Amy and Sam are really convinced that kindergarten is the best place for Ben," said Kate.  She and Jackie were discussing their roles in the upcoming meeting with Ben's parents and the Crestland staff. "They're even willing to take care of some of his PT and OT privately so that Ben will have time to be with the other kindergartners."

      "That might help," replied Jackie. "Did you know that Emily Pike, Crestland's special services coordinator, is coming to this meeting with Bill? I'm sure they're going to want him in a Co-op class."

      "That's for sure," agreed Kate. Amy and Sam have said that they'll go to a fair hearing before they'll send Ben to a Co-op class for kindergarten. Nobody wants that! Although they don't have many illusions about Ben, they've told me that they're not going to budge from their request for a regular kindergarten placement. They figure that if they don't start with kindergarten, they'll never have a chance of having him in classes with regular kids. Things are changing -- but they're probably right."

      "We need to do two things now," said Jackie. "We need to support Amy and Sam for starters, and then see if we can't come up with some arrangement that everyone could live with and that would be good for Ben."

      The next week the group met to discuss ways of providing an appropriate kindergarten experience for Ben. Included in the meeting were Amy and Sam, Bill Frank and Emily Pike from Crestland, and Kate and Jackie from Ben's preschool. The first part of the meeting focused on the results of Ben's recent evaluations and a discussion of long-term goals and program needs. There was little disagreement about Ben's developmental skills. In fact, everyone agreed about the majority of goals for Ben, most of which focused on promoting independence, mobility, and his ability to communicate with others.

      It was when the focus of the meeting changed to a discussion of Ben's placement that the participants began to feel uncomfortable. Ben's parents felt strongly that kindergarten should be Ben's primary placement while Bill and Emily still thought a Co-op class would be best. It was the impasse that Jackie and Kate had predicted and discussed earlier. Bill started stacking his papers and placing them in front of him as mute testimony to his professional skills and his knowledge of Ben. Amy sat up straighter and reached for Sam's hand.

      "Mr. Frank, we know that you think it won't work to have Ben in kindergarten at Crestland, but we think it can," said Amy. "We know he's not going to read or write like the other kids, but he learns a lot from them about social skills and getting along, and that's what he's going to need to know to be successful when he's older. Besides, we want him to go to his neighborhood school with his brother and his friends."

      "That's right," added Sam, "and those are our goals for our son."

      "I know they are," said Bill. "I wish I could say that we can meet his needs at Crestland, but I just don't see how."

      "Bill's right, you know," said Emily, the special services coordinator. "We've been searching for an OT for the last 18 months and haven't been able to find anyone!" Even if we could find a kindergarten teacher who'd be willing to have Ben in his or her class, there's no way we'd be able to provide the kinds of therapy services he's getting this year."

      "Amy, you've had a private OT for Ben haven't you?" asked Kate.

      "That's right," answered Amy. "It was a real problem for us when there were school vacations. Ben wasn't getting therapy, and we could see his progress stop. He's been seeing a private OT once a week for the past year, and we were planning to continue using our OT, Jenny, next year. Of course we'd like him to get as much OT at school as he's gotten this year, but, if that's impossible, attending kindergarten is more important to us. I am sure we can increase his private therapy if we need to. And I'm sure Jenny would be happy to consult with his classroom teachers--she's done that before."

      "That might solve one problem, but I still don't see how this could work for Ben or for us," said Bill. "Even if therapy isn't an issue, Ben needs the one-to-one, small groups, and pre-academic skills that he would get in a special education Co-op class. He can work on social skills at the playground after school. The only way to give him the academic skills he needs is in a small class with other kids who need the same kind of help."

      "We know he could learn in a special education class. We also know he could learn by being in a kindergarten class with his peers," said Sam.

      "And we've spent hundreds of hours thinking about what we want for Ben -- what we need to provide him with so he can meet his potential," added Amy. "That includes regular kindergarten and that's where we want to start. And we're not afraid to pursue this to a fair hearing. This is our son's life we're talking about!"

      "There might be some other way to meet all of Ben's needs at Crestland," suggested Jackie. "You have a full-day kindergarten at Crestland. Maybe there's a way to have Ben in the kindergarten class all morning and then have therapy in the afternoon."

      "I'm not sure that would work with the therapists," said Emily, "and I don't know how things would work in the lunchroom. But maybe it's a place to start."

      "It's really important to us that Ben be with the kids in the kindergarten class," said Sam. "We know that the regular kindergarten curriculum probably wouldn't be appropriate for him most of the time. But some of his IEP goals might fit in well with the kindergarten activities."

      "Let me go back and talk with the kindergarten teachers," said Emily. "We need to be sure that something like this would work for them. I think I know one teacher who might enjoy having Ben in her class, but she would have to agree to it. You know, it's in the teachers' contracts that they don't have to take children with special needs if they don't want to."

      "It sounds as though we'll still need to talk about how he'll be getting therapy," said Jackie.

      "And about an aide and resource teacher for him if he does go into the kindergarten," added Emily. "But I think we have a beginning here. Let's get together again in two weeks and see where we are."

      As it turned out, three of the four kindergarten teachers refused to have Ben in their classes. One teacher agreed reluctantly and with reservations to "give it a try," partly because she'd known Ben's parents through their church since before Ben was born. During the summer, Kate consulted with her, providing information about his skills and goals, as well as techniques that had been found to be successful in encouraging social interaction in the preschool class. Ben's kindergarten teacher visited the preschool class on several occasions to observe Ben and learn about the adaptations that had been particularly successful for him. Emily Pike arranged for a classroom aide in the kindergarten class for two hours each day. She also arranged for a special education teacher to be available seven hours each week. Sometimes the special education teacher would work directly with Ben, and sometimes she would act as a consultant to the teacher and aide. Ben's schedule would also include participation in physical therapy, occupational therapy, and speech-language therapy every afternoon.
 

Reserving Judgement

      Bill Frank remained unconvinced that kindergarten was an appropriate placement for Ben, and he told Jackie this in a telephone conversation several weeks after school started.

      "Bill," said Jackie, "Ben's parents are so pleased that he's in a kindergarten class at Crestland. They say that Ben loves to go to school, and he really enjoys being with the other children. They feel that he's really improving his social skills. Amy even invited two of the boys in his class to come over on the weekend. She says that's worked out really well."

      "I know," said Bill. "That's what they've told me, too, but I think they're dreaming. Learning social skills is not what going to school is for. Ben should have more time to work individually on language skills and basic concepts. What we're doing is just plain wrong for him, but it was the only way to avoid a lot of trouble with his parents. Maybe they'll see things differently when he gets a little older and the other kids make fun of him. This just doesn't feel right."

      "I'm sorry you feel that way," replied Jackie. "But when you get to the bottom line, I think that our job is to give parents a lot of information about the alternatives and then let them make the decisions. There's a lot of evidence that this kind of approach can work."

      "I know. Ben's kindergarten teacher says she's even starting to enjoy having Ben in the classroom," acknowledged Bill. "I guess he and his wheelchair have become the center of attention for a lot of the other kids. Well... we're giving it our best shot."

      "We'll just have to see how it works," said Jackie. "You and Ben's folks are on the same side now. That means a lot. You know they'll do all that they can to help."

Summary of Ben's Developmental Status

The following is a summary of Ben's developmental skills at the time he left his preschool program and entered kindergarten. This information was exerpted from his files and from the Learning Accomplishment Profile, which was completed before his discharge from preschool.

Health History

      Ben has a history of brain trauma, which was followed by a ventriculoperitoneal (V-P) shunt placement when he was an infant. He has developed seizures over the last six months and is currently treated with medication. He is hypotonic and does not walk independently, although he does cruise along furniture and walk with a wheeled walker. For the most part, Ben uses a wheelchair.

Cognitive Skills

      Ben's cognitive skills fall at approximately 36-month level. He can match "like" objects, count by rote to 15, build a block tower in imitation, and sort by color. He does not, however, name colors. He has also not developed size and shape concepts. Ben has a short attention span and needs adult assistance in maintaining concentration on tasks.

Fine Motor Skills

      Ben's fine motor skills are close to the 36-month level. He attempts all activities and uses art materials with assistance. He plays with small toys appropriately, although his handling is somewhat awkward. Ben particularly enjoys Play-Do and kitchen play. He often requires adult assistance to complete tasks and avoid frustration.

Adaptive Skills

      Ben needs assistance in all adaptive skills. He is cooperative with toilet training skills, but there has been little success. Adults monitor chewing during snack time and lunch because Ben needs reminders to chew slowly. Ben is showing an interest in dressing himself, but still needs a lot of help. At school, he makes an effort to remove his coat, requiring some assistance from an adult. Overall, Ben's adaptive skills are within the range of 20-30 months.

Social Skills

      Ben approaches both peers and adults and is eager to talk and play with them. Although his skills in interacting with peers are adequate, having an adult present to facilitate more meaningful exchanges is often beneficial.

Speech and Language Skills

      Ben's articulation of single words is age-appropriate. He speaks in simple sentences and makes his wants known through phrases and gestures. Expressive language is often characterized by "cocktail party" speech. At times, it is difficult for Ben to name familiar objects or to state their functions; however, this appears to vary with his neurological status (i.e., seizure activity). Ben can follow simple, one-step directions, responds to yes-no questions appropriately, and can answer some "what," "who," and "where," questions. His speech-language skills are scattered between 24 and 40 months.

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.

Shaping Ben's Future
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