Kindergarten's Not for Another 2 Years

     Andi glanced around the coffee shop. It was attractive and comfortable with a restful blue decor. Although hesitant to have a first meeting with a parent in so informal a setting, this looked as though it might work. It was a quiet and cozy atmosphere with the smell of pastries permeating the air. "Besides," Andi thought, "this was the mother's choice and, if I get too nervous, I can always keep eating!"

      Andi was anxious because this was her first real "transition family."  The school district in which she had been a preschool special education teacher for the past five years was implementing new procedures to facilitate transitions into preschool special education programs. The procedures had been developed by the local interagency coordinating council. Written policies, agency responsibilities, timelines, and lines of communication were all established. Andi's job was to provide support for families, help teachers develop curriculum strategies to assure continuity in the children's programs, and evaluate the transition services. Andi had attended a meeting for families who would soon be making a transition from the privately funded Geary Street Infant Development Program to public preschool programs. During the meeting, families were able to talk with several preschool teachers, representatives from the intake IEP committee, and parents who had successfully made the transition with their children. It was at the meeting that Andi met Maureen and Jerry, the parents of a 30-month-old toddler.

A Painful Past

      Maureen walked into the coffee shop a few minutes after Andi arrived. Spotting Andi, she headed directly to the table without a smile or wave of greeting. Andi thought, "This is it -- my first transition family. And she sure looks intense!" 

      The two women greeted each other and made small talk until their order of tea and croissants arrived. Immediately, Maureen said, "Let me tell you about Marcus. He's now two-and-a-half. Although he seemed quite normal at birth, we slowly discovered that our son had some special needs. He had a detached retina that was re-attached, and he was developing unevenly on his sides. I felt we needed to do something and I decided -- literally after watching a movie about babies with visual impairments in a theatre -- to take Marcus to something like Geary Street just as a precaution, because something could be going on with him besides vision. We went to Geary Street for about a year before we learned more about his condition. I felt somewhat self-conscious about being in the program because I thought Marcus's problems were so much more minor than the other children. Boy, was I wrong!"

      Maureen continued talking, and Andi listened carefully as she occupied her hands with her cup of tea. "In the beginning we thought it was very minor. He was just about two years old when the full diagnosis was made. Marcus has no neurological fibers connecting the two hemispheres of his brain, and he has a smaller left hemisphere. He has agenesis of the corpus callosum, which is extraordinarily rare. It was a tremendous shock to us to get this news because I was six months pregnant at the time. My focus had been on preparing for our new baby. Suddenly I was struck with the realization that Marcus was probably going to have a more severe disability than I ever imagined."

      Maureen paused a moment and, looking thoughtfully into her tea cup, began again, "A footnote that I have to share is that I lost the pregnancy three weeks after we found out about Marcus's brain. Jerry and I were both in absolute shock. We decided that we needed to carefully plan out the rest of the year for Marcus, especially what needed to be done within the school system. So, here we are now."  Maureen stopped speaking, sighed deeply, and dramatically took a bite of her croissant.

      Andi could see that Maureen was deeply troubled. She sympathized, "You've certainly been through a lot in the past year. I'm sorry. I guess it hasn't been easy for you or your family, and now you've got this new transition."  Andi paused, but Maureen did not respond. "Have you and Jerry thought about how you were going to plan the transition?" Andi continued.

      "What do you mean?" Maureen asked.

      "Well," Andi replied, "the staff at Geary Street can help you. And I can help you. The meeting the other night was one way we are trying to assist families to make the change you will be making -- by giving you information about the transition. We also have written information that I can share with you. I can connect you with other parents. We can spend time talking. Whatever you would like."

      At that moment, the waitress reappeared. Both women requested more tea. Maureen began speaking again, almost as though she had not heard Andi. "You know, Geary Street was wonderfully supportive for us. It was the group that gave me the chance to be with other parents and get used to the idea of what it was that went into helping children with disabilities. And it gave me a place to take my own feelings, because as we got this news, I suddenly needed to have people who would understand what was happening. And I felt very comfortable. But just as I got the diagnosis, and began to express my frustration and grief, now we have to go the next step of planning an IEP to get him into public school."

      Maureen continued to talk about her worries about the upcoming transition, her fears of leaving the Geary Street program, the pain of  Marcus's diagnosis, and the loss of her pregnancy. She needed little prompting from Andi. Andi glanced at her watch after the waitress came to deliver the check. She was horrified to see that she and Maureen had been talking for two hours. Andi realized that she needed to get back to the office to meet her other obligations, but she didn't like the thought of leaving before determining how she could be of assistance to Maureen.

      When Maureen next paused, Andi interrupted. "I don't want to cut you short, Maureen. I've enjoyed talking with you today, and meeting here at this coffee shop was a great idea. But, I have another meeting in a few minutes and need to leave. Would you like to meet again?" 

      Maureen said that she would and asked about the possibility of getting together the following week. Andi  thought that would work and suggested that they meet at the Geary Street program so she would have a chance to meet Marcus and they could both talk to the staff there. The two women agreed on the following Thursday morning, paid their bill, and left. Parting outside the door of the coffee shop, Andi said, "I'll see you Thursday then-and perhaps Jerry could come, too, if he has the time."

      Walking to her car, Andi thought, "Whew, I wish I had a degree in counseling!" She pondered approaching the issue of counseling with Maureen.

Planning for Success

      The following Thursday, Andi met Marcus. He was a delightful youngster with curly, blond hair and a ready smile. He remained in the classroom, playing enthusiastically with several other children and the physical therapist while Andi, Maureen, Jerry, and the early interventionist, Romaine, left to talk privately. As she walked to the meeting room, Andi thought, "Boy, would I love to have had that child in my class! He's wonderful and has a lot of potential for growth. I wonder if I made the right decision to leave the classroom."

      During the meeting, Maureen and Jerry received a booklet that described in detail the IEP process for the public school system. The process was discussed and Maureen's and Jerry's questions were answered. Then Maureen spoke up, "You've demystified the process for us and I think it sounds great. We like things planned out and you know we've been putting a lot of energy into planning for Marcus lately. But, it sounds frightening. What if we don't get exactly what Marcus needs on the IEP?  It almost sounds as though we're playing God."  Jerry nodded in agreement with his wife.

      "It's not as frightening as it may seem," answered Romaine. "It will work, but it's going to take some advance planning."

      At this point, Jerry interjected, "You said the first step was to refer Marcus to the school system. I'll do that. Then the assessment -- right?  Then the IEP meeting?  Let's get started on that planning. I want to get the best preschool for my son. We've been Marcus's primary educators up to this point. If we're handing the job over to someone else, we want to make sure they do a good job."

      "Of course you want the best for Marcus," Andi reiterated. "There are some wonderful preschool programs in the school district that will be very appropriate for Marcus. Would you like to visit some of them?" 

      "That sounds wonderful," Maureen responded. "Since Jerry's going to take care of the referral, I'll visit programs. I'm not working, so that will be easier for me."

      During the remainder of the meeting, it was decided that Jerry and Maureen would continue to read the information that had been provided to them and would assume responsibility for asking any questions that arose. Although offered, they preferred not to talk with other parents. Romaine would assist Jerry and Maureen in updating the information in Marcus's file and establishing and prioritizing goals and objectives for the upcoming school year. Andi would assist in setting up visits to preschools and in defining the type of environment that seemed most appropriate for Marcus.

      As they were leaving, Maureen approached Andi. "Could we meet and talk again? Our breakfast the other day was wonderful." Andi and Maureen agreed on a home visit the following week.

      During the home visit, Andi listened to Maureen repeat much of the conversation that had occurred over breakfast two weeks earlier. She was feeling more uncomfortable as she was convinced that Maureen might benefit from professional counseling. Andi did not feel capable of helping Maureen resolve some of her difficulties and felt that encouraging Maureen to talk with friends and family may not be the best solution.

      At an appropriate time in the conversation, Andi said gently, "You seem to be in a lot of pain about Marcus's disability and the loss of your daughter. You've been through a lot. Maybe you would feel better if you could talk to someone who could help you resolve some of the pain. I know a wonderful counselor who has helped a lot of parents of children with disabilities. Would you like to call her?" 

      Maureen sat back in her chair, took a deep breath, and said, "I suppose so. It might help..."

      As Andi wrote down the name and phone number of the counselor, Maureen abruptly switched the topic of conversation. "I want to visit every preschool program in the district. I want to find a healthy environment for my child -- one in which children like Marcus are perceived as growing children with potential. I'd like him to have a chance to be around regular kids, knocking around on the playground. Is that possible?" 

      Andi assured Maureen that good inclusive preschools were located throughout the city. She gave Maureen a list of the sites, as well as contact persons and visitation policies at each site. Maureen agreed to arrange the visits herself. Andi attended the first two visits with Maureen. After that, Maureen felt comfortable going alone.

Approaching the School System

      Although they had brief telephone conversations, the next time Andi saw Maureen was at Marcus's IEP meeting, which was approximately two months later.

      Maureen stopped Andi before they entered the meeting room and said, "I want you to know -- we decided to go into this meeting armed with every gun we have. We brought as many specialists as we could, we read all of our reports, and we did our preparation sheet." 

      Andi smiled in response and thought, "Marcus is certainly lucky. His parents will settle for nothing but the best." 

      The IEP meeting lasted more than 3 hours-much to the chagrin of some of the school personnel.

      In a follow-up home visit, Maureen told Andi, "I loved the whole IEP, partly because Marcus has begun to make some nice strides. Specialists at the school district were very pleased with what he could do. I had the sense that we had nothing but allies at the IEP meeting. The social worker who led the meeting never once left us with a doubt that she was interested in every bit of input we had about Marcus. I didn't expect my input to be welcomed on such an equal footing." 

      "I'm glad it worked out so well for you," Andi responded.

      "You know," Maureen continued, "the IEP turned out to be a really felicitous occasion. All these people were sitting around this table, madly keen on the progress that our son was making. They actually used most of the meeting to tell all the things that Marcus could do. We came away with a very satisfactory IEP, and I couldn't be happier with Marcus's placement."

      Maureen looked at her watch, "Oops, I have to go. We'll be away on vacation all summer, so Marcus won't start preschool until the fall. Thanks for all your help. You helped make the transition easier, and  I'm looking forward to getting my life back in September. I've decided to look for a part-time job, and I might even start painting again. I haven't called that counselor yet, but I'll do it in September." 

      Andi replied that she was glad she had been helpful, wished Maureen and her family a happy summer, and said that she would be available in the fall if Maureen needed anything.

Disappointing Results

      School had been in session for almost five weeks. Andi had not heard from Maureen, so she assumed everything was going smoothly. Marcus's teacher was one of the best in the school district and collaborated well with families. Andi mailed Maureen and Jerry a form to evaluate the transition services they received, smugly expecting a satisfactory report. The following week, Andi received a telephone call from Maureen.

      With little introduction, Maureen stated angrily, "I want you to know, I had no trouble sending Marcus off to school this fall. I was only too excited. I desperately needed time to myself. But things certainly haven't gone as we planned. Jerry says I'm perched like a hawk over everyone at the preschool. But, I don't care!  I'm still waiting to see when they're going to take that all-powerful IEP and translate it into meaningful things in the classroom."  Maureen took a deep breath, and continued with increasing agitation, "Well, I haven't even discussed  his IEP with his teacher. We need to go over that IEP so that we can chart out the goals and things Marcus can do. No one has even looked at it!  If this is one of the better preschools, I'd hate to see the others!"

      Struggling to remain calm, Andi asked, "Have you talked with Marcus's teacher about your concerns?" 

      "Of course I have," Maureen replied tersely. "Romaine told me to do the same thing, but the teacher says she has other children, too. She says she'll get around to Marcus soon. I've been going to school every day with Marcus so I can help his teacher, and she still can't find time for me!"

      "I'm sorry things aren't going as you would like them, Maureen," Andi sympathized. Andi was trying to choose her words carefully and be fair to everyone. "But I'm afraid I'm going to give you the same advice as Romaine--try to work out your disagreements with the teacher. It really is a tremendously busy time of year for teachers. Marcus's teacher has ten other children to get to know. I can understand your frustration about the IEP, but I'm sure Marcus has made progress over the past few weeks. Why, just being in school everyday is a new accomplishment for him. Sometimes it takes a while to understand and recognize the structure in a classroom and to realize that children are learning."

      Andi paused. When Maureen did not respond, she continued, "Maybe you should let it go for a little while-take some of the time while Marcus is in school to do the things you talked about doing for yourself. If things haven't improved in a few more weeks, you could take some action then."  Maureen continued to express her anger and disappointment, but agreed to be patient and give the teacher a bit more time.

A Celebration of Time

      Six weeks later the situation was much improved. Maureen invited Andi to observe Marcus's classroom. After the observation, the two women revisited the coffee shop where they had first talked. Since this was a celebration, they ordered chocolate eclairs and French Roast coffee instead of croissants and tea.

      Maureen began the conversation, "I want you to know that I was really angry with you when I called to complain about the beginning of school, but I took your advice anyway and simply sent Marcus to school. After two weeks, I began to spend just one morning a week volunteering and I fell madly in love with just being there and getting to know the children. I began to appreciate far more the subtlety of what constitutes good preschool education. Marcus is in a wonderful setting. The class meets the criteria Jerry and I had hoped for in terms of curriculum and the way the classroom is set up. And the way the teachers and assistant talk to Marcus and his little peers is no different than the way I hear regular preschool teachers talking. I'm grateful that Marcus is in an environment like this. And, guess what? I'm in charge of the parent group! We have our first meeting in two weeks."

      Andi refrained from saying, "I told you so," and simply expressed her happiness that Marcus was doing well. She had been worried that her advice to Maureen had been too directive-and Maureen's comment let her know that she probably had been.

      Maureen smiled wisely as she placed her empty cup in its saucer. "The process that I thought was going to be so difficult was much less frightening in retrospect. You know, I've learned to enjoy Marcus much more. I've learned to trust him, and I've learned to trust the integrity of the people who are providing services. I realize that they're there because they care. For me, the process had to do with letting a bigger group of people care about my child. I have a feeling that now I'm healed to a certain extent and I can help other people accept my child, rather than the other way around. I know I can really appreciate my son, and I think there is probably no greater gift to appreciate the child you've been struggling so hard with."

      Andi again expressed pleasure that everything had turned out well. She thanked Maureen for sharing her thoughts and feelings so openly. "I always learn so much from parents who are as articulate as you and as willing to talk," Andi added.

      The two women left the coffee shop together. Andi thought, "My first transition family--sure hope I did the right thing. I wonder if Maureen ever got counseling."

      As the women parted, Maureen looked back over her shoulder and said with a twinkle in her eye, "Kindergarten's not for another two years -- right?"
 

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.

Kindergarten's Not for Another 2 Years
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