The Disney Connection

     Isabel's frustration about Tommy's educational placement caught Principal Mark Rawlings off-guard. As Tommy Minh Pham's home-based preschool teacher for the past year, Isabel Morris had played a key role in planning Tommy's transition to a school setting.

      Mark motioned Isabel to a seat in his office. "What's going on?" he asked.

      "I'm upset because I think we've stopped short of what's best for Tommy," Isabel answered. "Mark, we're allowing fears about his serious medical condition to keep us from giving him the learning environment he really needs."

      As she spoke, Mark recalled last week's meeting in which he had expressed his pleasure that things seemed on track for Tommy to enroll in school at Claremont in five weeks. At that meeting, Mark had thanked the group members for their work in thinking through the issues they would face in having Tommy, a child who was chronically ill and dependent on a ventilator, in their school. As he listened, Mark became more aware of just how deeply Isabel felt about Tommy's transition to school.

      Without a doubt, the issues surrounding Tommy's school placement were among the most complex Mark had faced in his ten years as Principal of Claremont Special Education Center. Many concerns had surfaced as the family, educators, and medical professionals worked together to make it possible for Tommy to attend school. No one person had the full perspective necessary to ensure that Tommy's school placement would occur. A critical ingredient was that everyone --- family, teachers, doctors, nurses, and Tommy -- had to be ready to move forward at the same time. It had taken months for everyone to become comfortable with Tommy's transition to school.

      Isabel served as the coordinator for Tommy's transition planning group. Mark knew that she was Tommy's greatest advocate and that she had provided the impetus last fall that had brought Tommy's family and the educational and medical professionals together to talk about Tommy attending school. For nearly seven months, she had been involved in coordinating plans. It was clear that she was dissatisfied with the pace of the process.

      Isabel paused a moment to gather her thoughts before she spoke again, "I'm not blaming anyone. We've all worked hard, but we stopped short. Tommy has normal intelligence. You and I know that to have Tommy here in a special education school is one of the most inappropriate placements we could make."
 

A Hospital Visit

      Isabel first met Tommy when his discharge planning team invited her to the hospital. His year-long hospital stay was nearing its end. Earlier in the summer, a hospital social worker had contacted the school district about Tommy's need for home-based early intervention services. Within a short time, Isabel was assigned as Tommy's preschool teacher. The purpose of the hospital visit was for her to get acquainted with Tommy and to receive a brief orientation on his medical care. Isabel welcomed the opportunity to meet Tommy, but, in the back of her mind, she was also aware of how much she wanted simply to allay her own fears.

      "- Hi -," said Tommy as he was introduced to Isabel. His voice came out in a slow, breathy tone because of the tracheotomy tube.

      "I'm glad to meet you, Tommy," replied Isabel. "I think we're going to have a good year together."  She felt a pang of embarrassment as she realized she had spoken to him more loudly than she intended.

      Isabel was immediately taken with Tommy's eyes. There was a merriment in his expression that she had not expected. As she stood beside his bed, Tommy's nurse described his medical condition. "Tommy, I'm going to tell Ms. Morris about you, is that okay?" Tommy winked his approval and the nurse laughed. "As you can see, he's got a sense of humor." Tommy grinned. Isabel smiled and felt an inward sense of relief. The nurse then began her description with an overview of his medical history.

      Tommy was born with a fragile bone structure from a genetic condition known as Larsen's Syndrome. He was paralyzed from his neck down at age three as the result of a fall. Since the accident, he had been dependent on the ventilator for breathing.

      "Come take a look at the ventilator and I'll tell you more about it," said the nurse. "Tommy's ventilator is the positive pressure type, which means that air is forced into his lungs via the tracheotomy tube. Because this type of ventilation can harm his circulation and antidiuretic hormone balance, we have to take frequent readings of his vital signs. He will have to have round the clock nursing care. We feed him through a button gastrostomy. He now weighs about 32 pounds." The nurse gave Isabel a chance to ask questions and then continued.

      "When Tommy's home, he'll have a custom-fitted ventilator on the back of his wheelchair. He wears this body jacket to provide support and stability for his neck. As you can see, it extends from his neck to his waist. When he's in bed, the jacket is worn somewhat loosely, but when he's moved it's tightened for maximum support."

      Tommy didn't pay much attention as the nurse spoke about him. A television program about sharks had captured his interest. For her part, Isabel felt overwhelmed by all the new information. She was simply taken aback by the complexity of Tommy's medical needs. She thought, "I know there's a little boy beyond all those tubes. I just can't see him yet."

      The nurse sensed Isabel's discomfort and said with a smile, "If you have trouble with the equipment, Tommy can help you." Tommy turned from the television program and grinned at the nurse and Isabel. Isabel understood that she needed to give herself time to get used to being with Tommy. Toward the end of her visit, one of Tommy's ventilator alarms sounded. Isabel tried to hide the stab of panic she felt as the nurse moved toward the machine. Tommy calmly said to his new teacher, "I'm -- okay."
 

Support From A Colleague

      Isabel was scheduled to work with Tommy for an hour and a half 2 days a week. The second week of Tommy's home-based instruction had proved as difficult as the first week. This week, Tommy's lessons were interrupted by medical procedures three times. One of those times was to control a severe spasm in his right leg. Isabel felt exhausted at the end of the lesson.

      "I didn't think teaching Tommy at home would be this hard for me," Isabel confided to Laura Anderson, Claremont's school psychologist. Isabel had asked Laura to meet with her in the teacher's lounge. "After I met with the nurses and doctors in the hospital, I thought to myself, "I can handle this, it's going to be okay." Isabel took a deep breath and continued, "But now that he's home, we're in this little room far in the corner of the house. Even though there's a nurse right there, I can't help but worry about what I'm going to do if his ventilator stops."

      Laura poured Isabel a cup of coffee and motioned for Isabel to continue. "Laura, I know he sees me startle every time one of his alarms ring. What does it do to a child to think his teacher is afraid to be around him?"

      Laura replied, "Hey, didn't you tell me last week that you had to give yourself time to get used to being around him?  From what you've told me before, Tommy's a pretty accommodating child."

      "Well, I guess you're right," Isabel said. She was silent for a moment and then continued, "I can't help but wonder what his parents think of all this. You know they came to this country as refugees in the late 70's. Neither of them speak much English. What must it be like for them to have people in and out of their house at all hours?  Tommy's been out of the home for a year, and we bring him home and say, 'Isn't this wonderful?'"  She took a sip from her cup and then continued, "I know I shouldn't let it bother me, but the 'whoosh' of that ventilator sometimes gets to me.... and so does the medicinal smell. For the most part, as soon as we get into our lessons, I don't mind. I guess I'm only bothered when the medical procedures get in our way. The home care nurses and I are trying to arrange our schedules so that his routine care doesn't have to interfere with my instruction time."  Isabel brightened a bit as she remembered how hard Tommy had tried during that morning's lesson. "Laura, do you think you could schedule some time in the next week or so to do some assessments of Tommy's abilities?"

      Laura paused thoughtfully and replied, "I'd be happy to go with you. I'll need to do an evaluation on him anyway. A preliminary home visit will help me to decide what instruments to use later. You know, I've never tested someone with a tracheotomy before. I wonder how his expressive language is affected by that tube?  From your description though, he seems to be pretty verbal. He must have learned a lot of English while he was in the hospital."

      "I can't guarantee that he'll have enough stamina for any extensive testing," cautioned Isabel. "We may have to split the testing over several days."

      "You're probably right," said Laura, a little hesitant to commit so much time.

      "I think the place to start is for you to spend some time just getting to know him." suggested Isabel.
 

A Word of Caution

      Isabel couldn't wait to get back to Claremont to talk with Laura. As she drove into the school parking lot, Isabel laughed to herself about what Tommy said that morning. She also realized that her comfort and confidence in working with Tommy were increasing day by day. Once in the building, Isabel went straight to Laura's office.

      When Laura looked up from her papers, she grinned at the mirth in Isabel's eyes. "I have to tell you what Tommy said to me about your testing yesterday," Isabel chuckled. "He said, 'You tell her I'm mad because she didn't keep going. I know a lot more letters!' "

      Isabel's tone turned more serious. "Laura, I know you haven't had time to put together all the results from your assessments, but you've spent time with Tommy now. Do you think there's any reason for me not to push for a school placement?"

      Laura saw the earnest look on Isabel's face and measured her reply, "I think he could benefit from school and the other kids could learn from him as well. But it's going to be a tough road. We've served lots of kids with complex needs, but never anyone like Tommy. Maybe we should take things slowly."

      Isabel replied, "I can appreciate what you're saying, but Tommy can't spend the rest of his life in his room. Someone has to take the initiative to get him into school. He has the right to be integrated."

      Laura paused for a moment and then said, "I think you're doing a great job with Tommy. I just don't want you to underestimate what you're up against here. On the one hand, it looks like he can benefit from school. But, on the other hand, his safety is a big issue. I'm afraid there isn't going to be one right way for us to do things in his case."

      "You're probably right about that," said Isabel. "By this time I would usually have a good idea about what the family wants for their child. But language problems make ongoing communication so difficult in this case. I'm going to have to find a translator so I can find out how they feel about Tommy going to school."
 

A Halloween Fright

      "Mark, I sure appreciate you going to bat for me about Tommy," said Isabel to Claremont's principal as she passed him in the hall. "I think Tommy is going to be ecstatic when he hears that he can come to Claremont's Halloween party."

      Mark responded, "All I've been hearing from you is Tommy did this or Tommy said that. I can't wait to meet the little guy. It sounds like it's going to be a major operation just to get him to school though."

      Isabel nodded and let out a long breath, "You wouldn't believe it. It's been an eye-opening experience for me just to arrange the consent forms, not to mention the logistics of getting him here. I had to contact the district office for a translator in order to talk with his parents and get their okay. Then I had three extensive conversations with his home care nurse and two more with his pediatrician."

      Isabel took a deep breath and continued, "Now the pediatrician wants to send over an orthopedic specialist to check Tommy's body jacket before he'll sign the doctor's release. Once that's done, I'll call transportation to make arrangements to get him here. I won't even tell you about the checklist of supplies we're supposed to bring. The doctor even wants to have two back up ventilators on hand -- just in case!"

      Isabel worked hard to make all of the arrangements for Tommy to attend the Halloween party. He arrived in costume and make-up just like the other children, and his eyes drank in the sights of gala decorations and the children's merriment.

      For better or worse, Tommy's attendance at the party hadn't gone exactly as Isabel had imagined it.

      "Now that was a memorable way to end a Halloween party," declared Claremont teacher Sally Campbell. The mischief in her voice was not lost on any of the other school staff who were helping her to clean up after the party."

      "Memorable is not the word for it. I think my pulse is still racing," said Laura Anderson.

      "Hey, we survived," chimed in Mark Rawlings. "I don't think I ever saw any of us move as fast as when Tommy's ventilator alarm went off. All things considered, we did a good job of keeping our heads."

      "Keeping our heads?" asked Sally incredulously. "It was pure panic when we wheeled Tommy out of the gym down the hall to his back-up ventilator. Of course the thing stopped just as we were ready to load the kids on the buses."

      "We must have been a sight!" exclaimed Isabel. "With two of us pushing his wheelchair, the nurse using the handbag to give him air, and Mark in his clown suit directing traffic all the way down the hall! Of course, the most amazing thing is that while we're rushing around, Tommy is laughing so hard that tears are streaming down his face. His costume make-up was rolling down his cheeks in rivers."

      Sally Campbell quipped, "Yeah, we're all thinking, 'Dear God, don't let him die' and he's thinking, 'Wow, I hope they push me faster.'  He was having the time of his life as we went speeding around the corner."

      Isabel nodded in agreement and said, "You know when I'm with him I'm struck by the differences in our perceptions. He's had medical emergencies numerous times. He knows someone will be there to help him. He just doesn't react to his situation the way I expect. It's hard to believe, but I'm sure I think about that ventilator more than he does. Did you see how much he enjoyed having the other kids around him?"
 

Seeking Approval

      Mr. Pham, Tommy's father, listened attentively as the translator relayed Isabel's words to him. Tommy's mother, with an ear to the translator, moved quietly around the table making sure that everyone had plenty of snacks and tea. Isabel had asked them about their goals for Tommy. Mr. Pham spoke briefly to his wife and then through the translator said, "It's hard to know what to think. Through our doctor, I have heard about many new opportunities for children like Tommy. Right now, I want him to learn more of our language. Beyond that, I just want him to keep learning and doing better."

      Isabel smiled and said, "I enjoy working with Tommy and he seems to be doing very well." She then asked Tommy's parents what they thought about Tommy attending school. As the translator talked with Tommy's parents, Isabel mused about the challenge of bridging language and cultural barriers to explain educational rights and school policies. During the past month, Isabel had been impressed by the Phams' care of Tommy, particularly their knowledge of his medical needs. On more than one occasion, Isabel had seen Tommy's parents show a nurse how to adjust Tommy's equipment.

      After several minutes of conferring, Mr. Minh Pham's response was spoken by the translator, "For Tommy to go to school would be happy news for us. But there are many things to consider about his health. We need to talk with his doctor about this plan." Isabel and Tommy's parents went on to discuss Tommy's progress and what school might be like for him. At the close of the visit, Mr. and Mrs. Pham gave Isabel permission to speak with their pediatrician about school for Tommy.

      Dr. Kenji Nakamura had been Tommy's pediatrician since Tommy's birth. Tommy had always had a special place in the doctor's heart. In the anxious days immediately after Tommy's accident, Dr. Nakamura had led the fight to save Tommy's life. Even when Tommy's family began to give up hope, Dr. Nakamura persisted in his belief that Tommy would live. Countless hours of intense medical procedures, experimentation, and collaboration paid off as Tommy stabilized four weeks after the accident. Dr. Nakamura understood better than anyone that the commitment to saving Tommy was also a commitment to maintaining a high level of care for the rest of Tommy's life. He also knew the difficulty of maintaining a balance between Tommy's quality of life and medical precautions. Since Tommy had come home, Dr. Nakamura had visited him twice.

      Isabel had spoken with Dr. Nakamura several times during the fall to get recommendations about educational activities for Tommy. Now that discussions were underway about Tommy attending school, she wanted to make sure Dr. Nakamura was behind the plan.

      "Hello, Dr. Nakamura. It's great to speak with you again," began Isabel. "I'm calling as a follow-up to the letter I sent you about Tommy Pham going to school."

      "Yes, Ms. Morris, I read your letter and I think you made some good points about the benefits of school for him, but I think it's overly ambitious to talk about Tommy attending school in January."

      Isabel had expected such words of caution from him, but she was encouraged that Dr. Nakamura seemed somewhat receptive to the idea.

      Dr. Nakamura continued, "I agree that one of the key issues is Tommy's quality of life. As his doctor, I think a lot about whether being on the ventilator without social or school activities is best for him."

      Isabel took advantage of his pausing, "As I think about it, it's not only the academics, but it's also the opportunity to be with other kids. I remember when he was in the hospital, he enjoyed it so much when the neighborhood preschool asked him to judge the coloring contest."

      Dr. Nakamura listened and replied, "I don't think there is any doubt that it would benefit Tommy to be around other children, but transporting him safely is a big obstacle. The neurosurgeon says it's best not to move him around at all. The orthopedic surgeon says that Tommy's bones are so weak that there is no anchoring point to attach a steel plate to stabilize his neck. The body jacket is our best solution, but it's not perfect. An outing here or there may not be a problem, but transporting him every day increases our risks greatly. We must also think about his stamina and ability to concentrate for five or six hours a day. Before I approve any plan, it will have to be very flexible to accommodate his medical condition."

      They talked a few more minutes about the transition plan. At the close of the conversation, Isabel asked if Dr. Nakamura would be able to attend the planning meeting for Tommy the first week of December.

      "I'll mark it down in my calendar and do my best to be there," replied Dr. Nakamura.
 

A Decision Is Made

      Claremont's conference room was nearly full. As she looked around the room, Isabel reflected on the amount of time she had spent over the past month to make sure the other school staff would be ready for the meeting. While she continued to hope that a placement could be made in Tommy's neighborhood school, Isabel knew that she had to cover her bases with the Claremont staff. She thought to herself that this was the biggest staffing she had ever seen. Claremont was represented by Isabel, Mark Rawlings, Laura Anderson, Susan Sheridan (the school nurse), Sally Campbell, and the school's occupational therapist and physical therapist. A representative from the district's special education office sat next to Mark. Tommy's parents were present and were seated next to a translator provided by the school. Dr. Nakamura and two of Tommy's home care nurses were also on hand.

      After a round of introductions, Mark Rawlings provided a brief overview of the agenda. In their turn, the education professionals provided summary information about their assessments of Tommy. They also outlined ways they thought a school environment would benefit him. Occasionally, the translator would raise her hand for someone to slow down or to give her time to clarify points with Tommy's parents. For the most part, Tommy's parents seemed well-informed about the placement process. From her conversations with them earlier in the fall, Isabel sensed that they would be happy if Tommy were able to go to school. When the educational team was finished, the home care nurses and school nurse discussed their opinions about Tommy's medical care while in school. Alhough liability issues weighed heavily on people's minds, the general consensus was that a school environment would be beneficial for Tommy.

      Finally, Mark asked Dr. Nakamura to give his recommendation about Tommy's school placement. Dr. Nakamura summarized his understanding of the educators' recommendations. He then offered his opinion that continued home-based education with occasional school activities would be the wisest course to pursue. Isabel felt her stomach tighten as the physician spoke. Clearly, the momentum toward school placement had stalled. What seemed so possible just minutes before, now looked out of reach. Dr. Nakamura had spoken against the transition plan.

      The one last hope lay with Tommy's parents. Isabel felt herself tense as she heard Mark ask Tommy's parents what they thought. Via the translator, Tommy's father said he felt he knew his son better than anyone else. Even so, it soon became clear that he was hesitant to take any action without the doctor's approval. Home-based instruction would continue.

      Isabel sat stunned as she watched her plans unravel before her eyes. All we need, she thought, is for Tommy's parents to say, "Yes, we want Tommy to go to school." Despite her efforts to make things clear to Tommy's parents, they did not feel they had the right to make the final decision. They had trusted the doctor to save Tommy's life, she thought, and we put them in the position of having to go against that trust. Shortly after Mr. Pham spoke, Mark Rawlings adjourned the meeting.

      After the meeting, Isabel spoke about her disappointment with Laura Anderson. "Laura, everything went wrong," she said. "I thought I made it clear to his parents that they had the final decision about Tommy's placement." 

      Laura gently responded, "Isabel, do you hear what you're saying?"

      "What do you mean?" asked Isabel.

      "You make it sound as if Tommy's parents didn't make any decision at all," said Laura. "I know you're disappointed. Many of us are. But Tommy's parents did make the final decision -- they agreed with the doctor's recommendation. It may not have been what you wanted to hear, but you know they acted in Tommy's best interest."

      This wasn't what Isabel wanted to hear either. She still thought the right decision was for Tommy to go to school. However, Laura had made a good point and she would have to consider it as she recovered from her disappointment.
 

      A Disney Adventure

      About a month after the planning meeting, Dr. Nakamura called Isabel, "Ms. Morris, I'm calling with some good news. We just received word from Wishes, Inc. that Tommy has received a grant to go to Disney World in February."

      "You've got to be kidding," laughed Isabel. "That's great!  He's going to be so tickled."

      "I can't believe it myself," replied the pediatrician, "but I have the tickets right here in my hand to prove it. I called you so you could, perhaps, use some of your sessions to help prepare him for the experience. I'm working on the logistics of getting him to Florida. We're trying to ensure the stability of his neck while he travels. You can't imagine what an experience this has been for me to try to arrange the consent forms with his family, the hospital, the airline, and the folks at Walt Disney World. The list of supplies we're going to have to put together for this trip is amazing. It's going to be an unbelievable process to get him there."

      Tommy, his parents, and one of the home care nurses made their pilgrammage to Disney World a month later. A few problems were encountered, but, in general, the trip was a big success. Tommy returned home safely with a smile on his face, stories to tell over and over again, and a pair of Mouseketeer ears that didn't come off his head for at least two weeks.

      Two weeks after Tommy's return, Dr. Nakamura was having lunch with several pediatric residents. He had just seen Tommy the day before and was telling the residents about Wishes, Inc. and the family's trip to Walt Disney World. He said, "I've been thinking about what this trip has meant for Tommy and his parents. There isn't any doubt that it has been a real boost to his confidence. I've also been thinking that if we could make arrangements for him to fly 1,000 miles to go to Walt Disney World, we may be able to make arrangements for him to go a few miles to school. Actually, it was his parents who brought up the idea after they returned from Walt Disney World."

      After he thought a moment, Dr. Nakamura decided to turn Tommy's situation into a teaching experience for the residents. He looked at one of the young physicians and said, "These children require an ongoing commitment not only to medical care, but also to quality of life. Tell me, Dr. Markham, how you would balance the issues of cognitive and social development with medical risk?"
 

Getting The Go Ahead

      Isabel was elated when Dr. Nakamura called in March to say that he would support a school placement for Tommy on a trial basis. She immediately reported her conversation with the pediatrician to Mark Rawlings. By the middle of March, the paper work was at the special education office. Fortunately, most of the plan was known by the district because of the earlier transition planning meeting. On this day, Mark Rawlings received a call from the district's assistant director of special education.

      "Mark, this is Mike Peterson from the special education office. How are you doing?  I'm calling to give you an update about the plans to have Tommy Pham in school. I've had our people take a close look at the transportation, liability, and medical issues. It looks like we'll be able to do it. Between me and you though, this is going to cost a lot of money."

      "I hear you," replied Mark Rawlings. "This has been a difficult case for us to consider, but all in all I think the people at Claremont are looking forward to having Tommy here. I think we're up for the challenge."

      "That teacher, Isabel Morris, did her homework on this one. It made our decision a lot easier," said Mike Peterson. "You know, I heard that Sonya Michaels may get a kid who needs a ventilator in her school next year?  I think we're going to see more kids using technology in the future. We'd appreciate it if your team would consult with Sonya and her staff about the transition process."

      Mark Rawlings considered his response for a few moments and said, "I think our people would be happy to consult with Sonya's staff. In my view, the first thing is for Sonya to begin now. Our experience is that the process doesn't flow out of any IEP plan. There simply aren't any clear-cut policies on how to handle issues such as emergency care, liability, and transportation. It all needs to be worked out. Isabel's been working on the transition plan in one way or another for months.

      Mike Peterson then questioned Mark Rawlings about the collaboration process for the school. Mark replied, "No question. This was a team effort all the way through. The school staff and the medical people had to work together. The parents were the final decisionmakers though. They're the ones who had to weigh all of the risks and benefits. I have to tell you though, it was something else to do all this work through a translator!"

      As the conversation concluded, Mark offered, "This situation seems to be working out okay for us. We feel reasonably prepared, but we don't have any clear idea of how this is all going to work. We're going to try to stay flexible and take it a day at a time. I guess that's the best we can do." 
 

Making Compromises

      Mark Rawlings waited a moment before responding to Isabel's statement about the "inappropriateness" of a school placement for Tommy at Claremont. "Isabel," said Mark, "I can understand how you might feel this isn't the best place for Tommy, but I don't think it would deny him his rights that much if he had to make some concessions to his medical condition."

      There was a silence and then Mark continued, "Personally, I think Tommy would probably do quite well in a regular school classroom. I don't see that as impossible at some later time. He's a lot higher-functioning than I expected. But we're talking about a process here. We're going to have some good kids here at Claremont this fall. I don't see that it's going to be punitive for him to be here. After all, Claremont does have resources that the regular schools don't have and I don't think the district wants to risk the liability of having him in a setting without fully trained professionals. Who knows, Isabel, if things go well maybe we will be setting the stage for him to be integrated next year."

      Isabel shook her head, "It took a virtual miracle for us to get to this point. If the trip to Walt Disney World hadn't occurred, we wouldn't be talking about Tommy's schooling today. The trip had nothing to do with education. The medical people put the trip together. I'm afraid that this district is going to get complacent and want to keep Tommy here at Claremont just because they're afraid of a lawsuit. Is it going to take another miracle to move him to a regular classroom?  Time is an issue in his life. He deserves a chance to be treated like a typical kid."

      "We'll take the next logical step in due time," responded Mark. "I think Claremont is going to be a great experience for him. Besides, what are you going to say if his parents like Claremont so much that they want to keep him here next year?"
 

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 Disney Connection
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