Facilitated Communication-Case Studies
by Charlene Brandl
CONTENTS | CH. 10
|"Tell Them I Love Them"
|"See Us Smart"
|"They Will Jump for Joy"
Jenna and Julia
|"Opening New Doors"
|"Free Very Many Dreamers From Dumb Tyranny"
|"The Fire in My Head"
|"I Want to Be a Really Regular Kid"
|"Garbage Out of Silky Mouths"
|The End of the Beginning School Year 1993-94|
|"Get Me Out of My Autism"
Amie, Part 2
|"Try to Find Some Way to Make People Believe"
Chapter 10 : Amie, Part 2
"Get Me Out of My Autism"
I found myself temporarily out of a job during the summer of 1994, numbed by the pain I had experienced that spring at Whitman. I struggled with feelings of anger and bitterness, wishing I could somehow forgive those who had failed to understand what I was trying to do with those very special kids in my elementary classroom, and wondering how something that seemed (to me, at least) so unjust and unexplainable had come to pass. As I prepared copies of my resume and waited in line at the unemployment office, I wondered what might lie ahead for me, and I worried about the kids I had left behind. Lesley, Adam, Kurt, and Todd had come so far; I felt confident there would be no turning back. Their parents believed in them, and, while they werent using FC at home, I knew that their families, if not their schools, recognized the role the method had played in the metamorphosis each one had undergone. We fought together that spring to have FC included in the IEPs that would carry the students through the following school year, but both districts involved found ways to make sure that the words "facilitated communication" appeared nowhere in the final written documents.
Sammy, as a resident of Carlsville returning to his home school, was in similar straits. His situation, however, worried me more than the others. He had generally always been more able than the others to orally answer questions and make his needs known; he had not, however, learned to express his feelings of frustration--particularly the ongoing frustration of living with Down syndrome--without the assistance of FC. With no adequate means to communicate his feelings and with such strong feelings of anger and frustration, he still tended to resort to using behavior (mostly negative, of course) to express himself. His parents were just hoping that the staff at Carlsville would accept their son, with all his behavioral outbursts. They were reluctant to ask for more than that, so FC was not even mentioned when Sammys IEP was being discussed.
Many years earlier, when Carla (my very first student at Willow Creek) and her family moved away, someone with great wisdom reminded me that there would always be other children who were in need, other children to love and nurture. I had indeed found others, then. I was certain I would find others now. As the days of summer dragged on, I began to wonder whether the new school year would find me still at home. As I waited to see what fate might have in store for me, I became once again closely involved in Amies life.
I had been aware for some time that the Shelby School District was looking for a change in Amies programming. Her most recent school year (1993-94) had been a stressful one for everyone, and some modifications seemed imperative. While Amies dad, Matt, talked confidently as though I would somehow be walking into the position as her teacher for the coming year, I was too fearful of disappointment to let myself seriously consider the possibility. Matt, Amie, and I visited poolside almost every day that summer. I continued to send out letters of inquiry to neighboring school districts. I was hoping that just one might be looking for a special education teacher with many years of experience, a long-standing interest in autism, and a strong belief in a controversial new way of communicating with persons with severe disabilities.
Two years earlier, when Jill had returned to her high school teaching position and I to my position at Whitman, Amie became part of an exciting new pilot classroom in the Willow Creek building. Working with the district administrators, Pam Moir and I had helped to select the students and staff who would make up this special class where the main emphasis would be on encouraging the use of FC and seeing just how far this particular group could go with a totally new approach.
Laura Matthiesson was chosen as the classroom teacher. She had been teaching for several years at Willow Creek, and her students had proven to be some of our best communicators using FC. When she had stopped in for a visit that summer, Laura was speechless at first as she watched the students eagerly demonstrate what they could do, and then she quietly but with great feeling exclaimed, "This changes everything!" I liked her attitude immediately and was thrilled when she agreed to take the position as head teacher in the FC classroom. She was joined by Kerri Kuehler, a favorite aide among staff and students alike, who had worked closely with Laura in the past, and Lisa Taylor, a speech therapist who had also worked with many of the students involved. I didnt really know Lisa, but I had complete confidence in Laura and Kerri. They liked Lisa, so I knew I would also.
We arranged to have the entire Willow Creek staff receive training in the use of FC before the 1992-93 school year started, in hopes that the method would be used throughout the building with students who had difficulties communicating, and not be limited to the pilot FC classroom. Pam and I were concerned about many of the students with whom we had worked during the summer months who were not going to be in Lauras classroom. We wanted everyone to understand that these were intelligent kids they had in their classrooms, regardless of the severity of their disabilities, and regardless of outward appearances! We wanted all the kids to have every opportunity possible to continue to grow in their new-found abilities to express their thoughts, feelings, needs, and desires.
Almost immediately, Laura, Kerri, and Lisa made dramatic changes in the nature of their classroom. The walls and bulletin boards were no longer adorned with childish characters and themes; weekly news magazines became the source of much of the curriculum and instruction; the former emphasis on self-care (dressing, toileting, feeding, etc.) took a back-seat to matters that suddenly seemed much more important and exciting. Throughout the school day, the students were offered support at the hand or wrist (depending on individual preferences) and were encouraged to answer questions about history, geography, current events, or stories of interest that had been read to them. In addition, they used the classroom computer, a Canon communicator, or the letter board to compose short essays to help people throughout the school building and their families at home get to know them a little better. It was a time of great excitement for everyone involved. I found it particularly thrilling to visit whenever I could during that school year and see the many changes that were taking place!
As I watched the kids in that pilot classroom grow and develop that year, I became more and more convinced that every one of them deserved to be educated in a less restrictive environment. I thought about the ones who had shared with me over the past summer their dreams of going to school in their home districts, instead of the segregated special school conveniently located in the middle of the county. My tendency was to dream along with them, but I was realistic enough to know that inclusion in the regular education setting for students with labels such as autism and severe retardation is only effective when there is a strong support network in place.
Because of my close friendship with Amies family, I found it easiest to work with them to start the process of introducing the possibility of inclusion to the Shelby district. As the 1992-93 school year drew to a close, I volunteered to serve as Amies aide for the summer school session, but I wanted her to be included in the regular classes offered for residents of the district, not the special or remedial classes which were also provided. Matt and Sue, Amies parents, were enthusiastic supporters of the plan, and worked closely with the school psychologist and the director of the summer school program to do everything they could to ensure a successful experience. In addition, they wanted the district to begin planning for Amies full-time placement in one of the regular elementary schools in the Shelby system for the fall of 1993. We all knew it would not be easy, but I dont think any of us realized just how difficult it was going to be!
As it happened, Amie quietly left Willow Creek School at the conclusion of the 1992-93 school year, and entered the Shelby school system at age nine, accompanied by her friend and facilitator (me!) whose head was obviously somewhere in the clouds and who was about to be knocked back to earth with a heavy dose of reality!
There were many interesting classes available to summer school students in the Shelby district. Over the years, it had become increasingly typical for a large percentage of the elementary school population to enroll in the summer school program to participate in such courses as drama, arts and crafts, recreational sports, beginning golf, swimming, etc. Much thought went into our choices for Amie, along with giving her a chance to indicate via the letter board just which classes sounded the most appealing to her. While she obviously would enjoy being in the pool, we decided against swimming instruction since it tended to be a rather structured setting where students were expected to wait for instruction, follow directions, etc. That had never been Amies style in the water, or anywhere else for that matter! We settled finally on Elementary Science and Great Books, with a daily break built into the schedule, and I eagerly set out to prove that inclusion was not only possible but desirable for "special" kids like Amie, especially those who were so smart and had so much to contribute.
Our day was designed to go something like this: I would pick Amie up at her home (bus transportation, while available, seemed to be potentially too stressful for Amie and for the other passengers as well). Science with Miss Baxter for students in grades two through six, a 90-minute class, was first, followed by a 45-minute break, and then we would attend Great Books with Mrs. Evans (similar age range of students, and also a 90-minute class). Shortly before noon, I would drive Amie to her sitters home for lunch, and she would remain there until one of her parents picked her up.
On the first morning, Amie greeted me with a smile and continued to smile as we entered the building. We walked through the halls for about 10 minutes before entering the science classroom, where the smile faded and Amie spelled to me, I AM NERVOUS. After just five minutes, we found it necessary to take another walk, this time to the bathroom, but we quickly returned and tried once again to relax (Amie wasnt the only one who was nervous!). Amie was able to use the letter board to spell out answers to the questions on a science worksheet, which I recorded for her, and, then, she walked to the front of the room to hand her paper to the teacher. She returned to her assigned desk where I was waiting, sat down for another 15 minutes or so, and answered a few discussion questions, but was definitely becoming more stressed in her appearance as the time went on. (I looked at the clock frequently, thinking at times that it must have stopped for some unexplainable reason; time was going by VERY slowly!). I quietly offered words of praise and encouragement as Amie sat there, and I was also on constant alert because of her frequent attempts to hit, pinch, scratch, or bite as her tension mounted. Frequently, I reminded Amie that we could take a break at any time, and that she should let me know (using FC to point to the word "break") if she felt the need to leave for another walk. She became increasingly more aggressive, and even got involved in some spitting in my general direction, but consistently spelled, I WANT TO STAY.
The break time between classes turned out to be rather pleasant for both of us. We walked through the halls and outdoors as well, stopping to watch kids playing basketball and tennis; we visited the pool and had a snack. I was able to give Amie a little more freedom and not remain quite as close as seemed necessary in the classroom setting. As soon as we entered the classroom where Great Books was meeting, Amie spelled I NEED TO WALK. Since we had just finished about 45 minutes of walking around, I decided to push her to stay a little longer. This was not at all to her liking, and she let me know with a barrage of aggressions and spitting. She did eventually try to participate in the class, and in spite of her actions to the contrary, used FC to tell me, I LIKE THIS. At what seemed an opportune time, I suggested a break, which turned into a very long walk, with Amie running from me several times, but then telling me on the letter board, MAKE ME GO BACK. During the final portion of that first morning, Amie was unable to contribute any answers to the class discussion but agreed with me that she would work on sitting for longer periods and finally stopped hitting, spitting, etc., visibly began to relax, and appeared to be listening to the story Mrs. Evans was reading.
By the end of that first week, my hands and arms were covered with bruises and scratches, and I was wearing long-sleeved shirts in spite of the heat outdoors. (Luckily the school building was air-conditioned.) Amie and I had spent more time together than ever before, with a few high points and many low ones. In my notes, I recorded one of the brighter accomplishments: "Day 4: raised her hand for attendance on her own!" But overall I was exhausted and quite discouraged, understating the situation greatly with the following written comment in the journal I was keeping: "I am using food as a motivator and distracter in GB class to help her sit; this second class is so much harder for her."
During the second week, there was a marked decrease in the amount of aggression, as well as an increase in Amies ability to remain seated. She was particularly cooperative in science, even sitting to watch a video, something she had never before been able to do. Great Books continued to be more difficult for her, perhaps because it was later in the morning, but she was beginning to enjoy the free time that occasionally occurred in that class and seemed to be showing a definite social interest in some of the other students, another interesting first for her. My bruises were healing; my attitude was improving; and Amie begged me, HELP ME MY BODY IS MY ENEMY, which reinforced my belief that we were on the right track, if we could just keep working together and not get completely derailed when things didnt go according to our plans!
My daughter, Jill, took my place for two days at the start of Week Three. The first day was not at all successful, with lots of time spent walking in the halls. Amie was unable to sit for more than a few minutes in either class, and was repeatedly aggressive toward Jill and the other students as well. Jill reported that Amie was unable to tell her just what was wrong, but Amie asked Jill to be more patient. That seemed to pay off, for the next day was one of Amies best during the entire six-week summer session. Jill wrote in summary, "(Amie) only seemed to lose it a few times today and was able to get control again if reminded that she needed to be in control --- Very good day!" When I returned, I observed that Amies behavior seemed to be leveling off, and she was making some very nice attempts to participate in the various class activities. Her body was more relaxed. We were taking fewer walks and bathroom breaks, and Amie seemed able to walk around the classrooms without putting anyone or anything in danger!
Amie continued to be relatively under control and happy during the fourth week. I observed several more efforts on her part to return the friendly social overtures some of her classmates were making. Prior to this time, most of the students in both classes and in the school hallways where we spent much of our time seemed to either be afraid of Amie or to ignore us completely. Little by little, kids were warming up to her, and it seemed as though Amie was interested but unsure about responding.
Outside of school, on two different occasions during that week, Amie was found walking alone on the country road that ran from her house to ours (unfortunately with a busy highway in between!). The second time it happened, she was wearing only her underwear and dragging a sleeping bag behind her. Was she coming to swim? Was she planning to move in? Did she perhaps feel as I did that we were creating a very special bond as we worked together to overcome the effects of years of anger and frustration that had previously been expressed only through behavior (screaming, aggression, destruction, etc.)? Luckily, a kind-hearted and understanding neighbor found Amie and safely returned her to her home on both occasions.
Highlights of the summer session would have to include the times that Amie actively participated in class discussions and even games, surprising classmates and teachers alike with the accuracy of her facilitated responses. By the end of the fifth week, she was complaining to me that the classes were too easy for her and requesting to meet with the high school principal to see if perhaps she could begin to study chemistry!
As an assignment in Great Books, after studying the amusing works of Dr. Seuss, Amie and I worked together using the letter board as she composed the following poem:
And with just a little encouragement, Amie wrote notes to both of her teachers on the last day of classes:
DEAR MISS BAXTER, I REALLY LIKED BEING IN YOUR CLASS FOR SUMMER SCHOOL. I ESPECIALLY LIKED PLAYING SIMON SAYS. THANK YOU FOR BEING NICE TO ME. YOU ARE A VERY NICE TEACHER. I REALLY LIKE YOU REMEMBER ME WHEN YOU GO BACK TO GREEN BAY.
DEAR MRS. EVANS, I REALLY LIKED BEING IN YOUR CLASS. IT WAS LOTS OF FUN. I ESPECIALLY LIKED THE WAY YOU TEASED ME. YOU ARE VERY NICE. THANK YOU FOR BEING SO CARING.
The final days of the summer session were a mixture of thrills (when Amie was able to interact with friends or use FC to participate in class) and despair. We experienced some of the highest highs and lowest lows we have ever had in our years together. Each morning that last week, she started the day with a smile on her face and a bounce to her step, but, often as the morning progressed, her mood changed dramatically. We had some of the following exchanges amid violent physical struggles and lots of tears:
(C): "Something seemed to be bothering you when I saw you last night."
I was, of course, planning to return to my teaching position at Whitman Elementary School, but I felt fortunate to have started working with Jeanine Krupp, who was going to be Amies full-time aide for the coming year at Northside School in Shelby. Jeanine had spent many hours with us during the summer, and it was especially reassuring to know that Amie had been able to use FC with this new adult in her life on the very first attempt. Jeanine seemed to be just the right sort of person for the job, calm and caring, with a willingness to learn and a sincere interest in Amie and autism. She was quite realistic, as well, and had personally witnessed some of our most difficult moments together that summer. In fact, during one of our more physical battles when Amie was working through her various emotions (as we faced the difficult transition to come), Jeanine and I both heard her say to me, "Im sorry." It remains one of the rare spoken phrases anyone has heard from Amie since autism took over her life at age two.
Amie seemed to like Jeanine, and enjoyed showing me that she could work with her, so I gradually faded myself out of the picture whenever I could. In addition, I conducted an in-service presentation in August for the staff at Amies new school to help prepare them for her arrival in just a month. I shared what I had learned about autism over the years, what Amie had been through as a child, what she had taught me about herself, and, finally, my hopes and dreams for her future. But I could not begin to predict just what they might experience in their attempts to include Amie in regular classes. My hope was that I had conveyed my belief that this was what Amie and her family wanted, and, while it was certainly not going to be easy, the rewards would be great indeed.
And so, in the fall of 1993, I returned to my class at Whitman and Amie and Jeanine began their adventure together at Northside. We were all very busy, and, while I communicated almost daily with Matt, Amies dad, I found myself seeing less and less of Amie. I did hear in the community, however, that Jeanine was wearing long sleeves to cover her bruised arms, and several people were wondering whether placement of a student such as Amie was appropriate in a regular elementary school.
And also in the fall of 1993, the major TV networks joined PBS in their negative stories about Facilitated Communication. While Amie was not directly affected by the controversy, I certainly was. I tried not to share my anxiety about the situation with her. Even though we were seeing each other only once a week, when we went for long, quiet walks together, she somehow knew I was troubled. Little by little, Amie stopped using FC at school, and refused to use it during our time together as well. Our walks became even quieter, with me doing all the talking and no longer stopping to pull out the letter board to see what Amie might have to say. She had refused forcefully and often, and I had no choice but to respect her wishes.
Late in November, 1993, we had the following conversation, struggling together on the floor at my home. I had my legs locked tightly over Amies and had to constantly ward off her attempts to pull my hair, scratch or bite.
(A): I AM WORRIED PLEASE DONT GIVE UP
I was attending meetings about once a month at Northside hoping to help the people who were trying so hard to make Amies experience a successful one, but I became more discouraged as the year progressed. I heard more and more reports of serious behavior problems. I repeatedly tried to reassure everyone involved that Amie was happy to be at Northside and trying to fit in, but for whatever reasons finding it just about impossible to control her body, to "be good," as she described it. At one of these meetings, Jeanine looked particularly tired and close to tears most of the time. Later, when she and I talked privately, I realized that she, too, was terribly discouraged and unsure as to whether she should or could continue as Amies assistant.
Amie and I went for one of our long silent walks that evening. At the end I told her I wanted to try one more time at my house to have a talk to see if there might be something I could do to help the situation. She fought me vigorously from the outset, but I insisted that she share something with me to help me understand what was going on. After several false starts, with Amie throwing the letter board and reaching back to hurt me physically in any way she could, she finally pounded out: YOU STARTED ALL THIS AND YOU ARENT THERE WHEN I REALLY NEED YOU!
This happened to coincide with the height of the controversy over my position at Whitman, and the pain I felt at the moment was simply too much. I broke down in tears, and quietly drove Amie home, unable to put into words the sorrow I felt for her and for the others I seemed to be letting down. And yet somehow I knew that Amie was suffering, too, and probably had been trying desperately not to tell me of her frustration and anger so as not to make my situation any worse.
During the summer of 1994, after losing my teaching job at Whitman, I once again worked as Amies facilitator during the six weeks of summer school. This time around we participated in a class called "Creative Music and Movement" for the first part of the morning and Miss Baxters science class for the latter part. In general, Amies behavior was much better than it had been the previous summer. I was particularly pleased to see how well she was accepted by the other students everywhere we went.
Even though Amie needed lots of assistance from me in order to participate in the dance activities and, of course, was unable to sing at all, she truly enjoyed the first class each day. The time went by quickly while we were in that class. This time around she had more trouble sitting during the science class and was seldom interested in using FC to participate. She was, however, happy to interact socially whenever the students were actively working on projects, and, most of the time, her behavior at such times was pleasantly acceptable. We ended the summer session on a positive note by participating in a performance with the "music and movement" group in front of parents and friends, with Amie smiling and cooperating throughout the entire activity.
And then it was decided to start the new year (1994-95 school year) with Amie at a different elementary school (Westview), under the supervision of Gwen Krueger, the teacher of students with emotional disabilities (ED), with Jeanine continuing as Amies aide and a new part-time teacher to be hired, preferably one with some experience and interest in the area of autism. I applied for the position, went through the interview process and was hired in August. There wasnt much doubt in my mind that I had finally found the explanation I had been seeking for the terrible events of the previous year, and I had found as well that particular student who needed me at just that time.
Amie started out her fifth grade year with Jeanine at her side every morning until I arrived around 11:00, and then the two of us were together for the remainder of the day. From the beginning, Amie appeared happy and was for the most part cooperative in her new surroundings. She attended fifth grade math, social studies, and science classes, going with her fifth grade classmates to music, art, library, physical education, lunch, and recess as well. Whenever Amie needed a break, or during classes that were not quite as appropriate for her (Reading was usually stressful, since there was such an emphasis on individual oral reading, for example), she was welcome in the ED room. There were usually three to five students working at their desks, and a large comfortable couch that Amie loved!
When she was with Jeanine, I looked for opportunities to talk with classes throughout the building to help everyone understand Amie and autism a little better, and hopefully to use a little education and preparation to avoid problems that might develop if Amie were to become upset or aggressive. Using a variety of activities based on the ages of the students and a wonderful video on inclusion ("Educating Peter"), I tried to explain the extreme frustration of being very smart and "normal" in most ways, but unable to speak or control ones body. If students and teachers could just remember to speak to Amie as a fifth grader and include her in activities and conversations, I explained, most of the aggression could be avoided. I was hoping for much more, of course, daring to dream that perhaps some of these new people in Amies life could come to know and love her as Jeanine and I did.
We had a good year and were fortunate in so many ways. Mrs. Krueger and her very caring assistant, Mrs. Goodlet, and their students all made us feel welcome in the ED classroom. They liked Amie, and she liked them. Mrs. Rortvedt, the fifth grade teacher, was one of those wonderfully flexible people who genuinely liked kids and in a very natural way set a marvelous example for her students and the other teachers. She looked for ways to interact with Amie in a warm, positive manner, understanding from the beginning that Amie was unable to respond, that conversation would be a one-sided event. This was not so easy for everyone who met Amie, and many people (mostly adults) chose not to speak to Amie until much later in the year, as they gradually became more comfortable in her presence.
At the start of that school year, Amie attended classes daily and used FC to complete a significant portion of the daily written work. Soon, however, she became more resistant to our efforts to include her in the academic activities of the fifth grade class. Without warning, the letter board would be sent flying through the air and Jeanine and I were once again being scratched, bit, and pinched on a regular basis. We started to worry about the possibility of classmates getting hurt, something we all certainly hoped to avoid.
We worked with Amie looking for ways that she could tell us when she needed to leave the fifth grade classroom, preferably before becoming disruptive or aggressive. This led to her use of the sign for either "bathroom" or "break" frequently throughout the day, sometimes just moments after entering the classroom! Fortunately, I was able to communicate with Amie back in the ED room using FC and I asked her for suggestions to make things go better for her in Mrs. Rortvedts room. By the end of September, Amies messages to me all had a single focus: GET ME OUT OF MY AUTISM . . . HELP ME . . . MAKE ME NORMAL. Over and over again, she begged me to find some way to help her talk (really talk, not using a letter board!). She apologized for acting out when she was unable to control her body. She complained also that people still seemed to see her as retarded. This was a common problem among all the FC users I had known, an ongoing area of frustration they had to face almost everywhere they went. At the end of October, we had the following conversation:
(A): RIGHT NOW I AM REALLY ANGRY BECAUSE REALLY MANY PEOPLE SEE ME TOO RETARDED
Conversations such as this one were always stressful for both of us, but I tried to use them as an opportunity to provide some amateur counseling to help Amie accept her situation and make the best of it. Somehow my words never seemed adequate, however. I had become so very close to Amie in our time together that I was beginning to hurt for her, I felt her pain and frustration. I simply could not imagine living in a world of silence, and I knew that I too would have to lash out at the people and things around me in the sheer frustration of being so completely helpless most of the time!
Jeanine and I started looking for ways to help Amie keep up with the fifth grade work without actually attending all of her classes. We read to her from the text books, gave her sample math problems to check for understanding of concepts, and generally limited her work to taking the tests that were given in the various subject areas. Amie was usually attentive and content while we read to her, and almost always cooperative when it was time to take a test. She surprised us with her ability to answer questions, usually scoring above 90 per cent correct, and sometimes reminding us that most of the fifth grade material was not particularly challenging to her (BORING was the term of choice!)
Partly because we were getting tired of reading from the science and social studies texts and partly in an attempt to expand Amies leisure time interests, we started reading from a variety of other sources. We selected stories of interest (we hoped) from the newspaper and from news magazines and also looked for books from the library that Amie might like. Favorites included Charlottes Web, The Journey Home, Little House on the Prairie, The Diary of Anne Frank, and The Secret Garden. And then one day, I discovered a biography of Helen Keller written for children. Amie sat attentively as I read the whole book in one sitting, and, then, eagerly tapped at the book until I got the message that she wanted to hear it again. Jeanine had to repeat the same book a third time the next morning, and I read it once more that afternoon. I decided then to try reading to her about Temple Grandins experiences as a young girl with autism. Amie laughed aloud as I read some of Temples descriptions of her earliest memories of her autistic behavior that was so frustrating to her family and teachers. Again, she wanted to hear certain passages repeated several times. When Temple started to describe her experiences in school in more detail, however, Amie stood up, took the book from my hands, and put it on the shelf. Using FC later, she explained that she wanted to hear about people like her, people who cant talk, and so the next book I selected was one of my favorites, Annies Coming Out, the story of Rosemary Crossleys early successes with Annie MacDonald using FC in an institutional setting in Australia.
In addition to the time we spent reading, Amie had developed a new interest in painting. Months earlier, at the end of one particularly frustrating day at summer school, I had asked her in desperation, "Just what would you like to do?" (since it was becoming more and more obvious at the time that she didnt really care very much for any of the activities I was promoting!). Amie had thought briefly and then spelled, I WANT TO PAINT. Fortunately, I didnt give in to my first impulse, which was to laugh, but was somehow able to maintain an attitude of respect as I explained that I would have to give the matter some thought. After all, at that stage it was still impossible for Amie to encounter any container of liquid without either taking a quick drink or spilling the entire contents. Paint? How could we?
But paint we did, and the results were pleasantly surprising. For the first several weeks, starting sometime in January 1995, I provided Amie with pages and pages torn from "Paint with Water" books designed for young children. The small container of water was rarely spilled, and Amie would often stay at this activity for up to 30 minutes at a time, happily occupying herself and needing little or no assistance from any of the adults in the area (other than to replace her supply of water from time to time). It was gentle, compassionate Gwen Krueger, the ED teacher who was so generously sharing her classroom with Amie, Jeanine, and me, who first expressed a willingness to introduce Amie to real paints. Some of her students were going to be painting, and she invited Amie to join them. Amies response was quick and very positive, and, for the rest of the school year, Amie spent up to several hours each week using water colors and large sheets of newsprint paper to tell us what she could about what was going on inside her silent, unpredictable, hard-to-control body.
At first, Amies paintings were muddied and very wet. She would apply and reapply one color after another, until the entire paper was colored a dirty brown and holes appeared where the paper had become saturated. And, then, so gradually that we almost missed the significance, white spaces started to appear, along with strikingly beautiful muted colors that seemed to have some special form and perhaps even meaning. I stayed late at the end of one school day that spring and carefully mounted some of Amies work on colored construction paper and then hung the paintings on one large wall of our classroom. When I finished the task and stood back to look at the display, I was overcome with emotion, standing there alone in the darkened building, crying silently for a very long time as I thought about this complex young girl who meant so much to me.
With the help and encouragement of Kris Hyland, our occupational therapist, I had started trying to work with Amie on the computer. It seemed a logical and desirable activity for several reasons: It would, we hoped, make Amie feel more like the other fifth graders who used computers frequently during the school day, and it would provide a better long-term record of Amies communicated messages. But Amie had never had a friendly relationship with computers and we had to proceed cautiously because the cost of repairs to the equipment would undoubtedly be very high. Another significant factor was that Amie was now almost 11 years old and it was becoming increasingly difficult for me to use FC with her just because I could not hold her in such a way as to help her control her entire body. At first, Kris and I worked to help Amie remain seated at the computer table without throwing the keyboard or monitor, and we were satisfied with sessions that lasted just for a minute or two if no one had been injured and no equipment had been damaged. Ever so gradually we were actually able to use FC, usually with one of us holding Amies body in place while the other used two hands to provide the needed resistance and support for Amies typing hand. An early message conveyed via FC encouraged us to provide even more pressure:
(A): I LOVE YOU SO MUCH
Interpretation of that last word (PRNFWESZSZXURE = PRESSURE) was perhaps stretching things a bit, but Kris and I could both easily feel where Amie wanted to go on the keyboard and quickly learned to ignore all the extra letters that appeared when she moved ahead in her usually impulsive, uncontrolled manner. Seeing the extra letters appear on the screen was upsetting to Amie, but it helped when we were able to read her message aloud and, thus, assure her that we were, indeed, hearing the message she intended to convey.
I tried that spring to ask Amie about her painting, but it took many, many attempts before she was able to answer. About the same time as her work went on display in the classroom, we had the following exchange:
(A): LET MEBPAI NT PLEDASE
And then after many more attempts, Amie was finally able to share some insights into her use of particular colors:
(A): WHEN I USE YELLOW I FEEL OUT OF MY AUTISM.
We have the "dandelion" painting hanging in our classroom still. Jeanine was the one who pointed out to the rest of us that outside our window that spring day, the only time any of us can remember Amie choosing to use yellow as her dominant color, was a grassy playground alive with golden dandelions! Out of her hundreds of paintings, this remains the only one with any sort of apparent theme and the above typed conversation remains one of the rare ones with no extraneous letters or misspellings. The facilitated exchange was also strangely lacking in any of the usual physical resistance on Amies part. For some reason unknown to any of us (and probably unknown to Amie as well), her body was in a rare state of peace at that moment.
One of the last books I read to Amie that spring was suggested by my daughter Jill. Years earlier I had read and enjoyed Jonathan Livingston Seagull, but I had long since forgotten just what the story was about. Jill did nothing to refresh my memory, but, when she heard that Amie was enjoying our reading sessions so much, she said that this short book was a "must read." I read it to Amie in two sessions, becoming so emotional at times that I almost couldnt continue to read. And then, she wasnt satisfied until I had read it through once again, from beginning to end in just one sitting this time. Jonathan, for those who havent read the book or have forgotten as I had, is a rather unique bird. All the other gulls care about is where to find food; all Jonathan cares about is the art of flying. He becomes an "Outcast" from the flock but courageously continues to preach that flying means freedom, that one is limited only by ones thoughts. "Everything that limits us we have to put aside," he explains to his proteges as together they continue their pursuit of a much higher level of existence. As we finished the book the second time around, I looked deep into Amies eyes and couldnt help wondering how many "regular" fifth graders could understand such an allegory as she so obviously did.
We faced a difficult decision that spring. Amie had consistently demonstrated that she had a good grasp on all areas of fifth grade academics. Since Westview School only went through fifth grade, however, moving on to the next level would require changing schools. Such a move would mean that Amie would find herself in yet another school setting, her fourth different placement in just four years. That seemed to be too much to ask of any student, and certainly too much for a person with autism who had already experienced so much frustration in her young life. With input from her parents and many of the professionals who had worked with her during the past two years in the Shelby schools, the final decision was made to have Amie stay at Westview for another year, using the year to develop her emerging social skills, and to begin to make a more gradual transition to a new school setting.
We continued to provide daily opportunities for social interaction during Amies second year in fifth grade. At first, this made her uncomfortable and agitated, since while the classroom and teacher remained the same, all the students were new to her. Gradually, however, Amie found enough friendly faces among her classmates that she willingly joined them for music, physical education, art, recess, lunch, assembly programs, parties, and field trips. We tried to attend an occasional academic class, but that never seemed to be to her liking. And so, Jeanine and I (now dealing with several new students besides Amie), took up the challenge of providing appropriate academic instruction in our special education classroom. I borrowed text books in math, science and social studies from the middle and high schools, and we set about reading more than ever before. Usually we gave Amie an opportunity to select a book of her choice and reading sessions, which might be anywhere from five minutes to an hour in length, became very frequent throughout the day. Much to my personal dismay, whenever I included the Earth Science book as one of the choices, I could be quite sure that would be the one Amie would pick! Jeanine seemed much more comfortable reading this advanced science text, so I would often cheat on my shift and offer only social studies or a novel. (And only rarely did Amie choose the novel!) Sometimes, Amie rejected all of my offerings and looked around the room as if searching for one that was more suitable (that dreaded science book again!)
Most children with autism have to deal with sensory systems that work differently from the rest of us. In Amies case, at age 11 she was still very much in a tactile mode, fingering or even mouthing just about everything within her reach, and needing an unusual amount of movement throughout the day. So we encouraged her to chew gum, and we read while she sifted beads or other small objects through her hands. We read while she coasted back and forth on the oversize swing we had suspended from our classroom ceiling. And we read while she paged endlessly through catalogs or magazines or fingered her collection of photographs. We read while Amie painted, while she paced around the room, and mostly while she sat on the floor in her favorite corner of the room, surrounded by all her treasures. On really good days, Amie would help us clean up her area, but mostly we just learned to accept and respect what we saw as her need to "nest" as she surrounded herself with magazines, photos, stuffed animals, and innumerable tiny things that she had sifted through her fingers hundreds of times.
Back in May, 1992, when Amie had first started using FC to reveal the complex and intelligent person within, I excitedly started thinking about her future in an academic setting. Looking far beyond her behavioral challenges, which were just about as extensive as any I had ever personally encountered, I was certain that Amie could succeed in an inclusive educational setting, if the proper supports were provided. She had, after all, somehow learned to read, spell, do math, put together grammatically correct sentences, and understand and remember a wide variety of concepts, facts, etc. --all with no formal academic instruction prior to age eight and the introduction of this new method of communication. As we (Amies parents and the various school personnel involved) met to plan for Amies transition from a segregated setting to the much less restrictive setting at Northside and then Westview schools, it was mostly the academic part of school that was our focus. Our hope was that with the use of FC to express herself, along with the exciting new challenge of instruction more appropriate to her intellectual level, Amies considerable problems with behavioral control would decrease sufficiently to insure her acceptance in the regular classroom setting. Never could I have foreseen what Amie would choose as her personal focus in her new environment.
For it was truly by her own choice that most of Amies time and energy during each school day was directed toward social interaction, that area of development so often lacking or severely delayed among persons with autism. Prior to using FC, Amie was unconnected to the social world around her, and those who knew her as a young child were astounded to see the changes that took place once she started to communicate. But the changes certainly didnt come easily, and blood was literally shed in the process of Amies transformation (hers, mine, Jeanines, and others). By the second time around in fifth grade, however, we all had to recognize and accept that there was nothing more important to Amie herself at this time in her life than being accepted by her classmates and feeling a part of their activities.
Tentatively, at first, and then with increasingly more insistence, Amie tried to show us that she wanted to socialize. During her first forays into the world of regular education, she demonstrated a clear preference for the unstructured break time each day at summer school. At first, I assumed that the availability of snacks made that a special time, but I began to notice that Amie wasnt always interested in eating. She seemed to want to learn how to "hang out" with other kids, to listen in on their conversations, to watch their actions, and if she were fortunate enough to find an understanding individual or small group, perhaps to somehow join in their activities. This interest in other kids continued while she was at Northside and became the main focus of Amies energies during her two years at Westview.
As frustrated as Jeanine and I were by Amies refusal to use FC during most of the school day, we were just as thrilled to see her blossom socially. The two summer sessions in regular classes, along with the long year at Northside, set the stage for what we were to witness during the 1994-95 school year when Amie started to experience sincere acceptance among her classmates, and even started to develop two very important friendships with girls her own age. Ann and Stephanie reached out to Amie at lunchtime at first, helping her with her milk carton or napkin, sharing treats from their lunches, and most importantly choosing to sit and talk with her day after day. Little by little, their friendship extended to the playground, the hallways, and the classroom. Other students watched these two special girls interact with Amie, carrying on conversations that tended to be so one-sided and yet getting some rather exciting feedback from Amies eager smiles, laughs, and nods. More and more of the fifth graders became comfortable in Amies presence and looked for ways that they, too, could become part of her social circle. Amie loved being a part of the fun, and was particularly delighted when some of the boys in her class started finding ways to talk with her, asking for a "high five" or sharing a joke, etc. In fact, we all loved to see her smile or hear her laugh, and somehow the unused letter board and all that untouched academic work no longer held much importance to any of us.
At the same time that Amie started her second year at Westview, a group of her friends from Willow Creek (including Jenna and Julia Martin) were making the very significant transition to Shelby High School, for all of them their first experience ever in a regular school setting. The students in this new class ranged in age from 12 to 20, and many of them were experienced FC users. For many reasons, it seemed logical to begin to plan for Amies gradual transition to this class (Cogntively Disabled--Severe, or CD-S, was the label), eliminating the possible difficulties involved in having her at the middle school for two or three years, yet another stressful change in her school environment. Or so we thought!
All too often as parents and teachers, we make decisions about the lives of children based simply on what we think is best. If they are able to speak, kids begin quite early to learn the art of negotiation in order that their wishes might at least be given some consideration in such decisions. For those unable to communicate, however, it is just assumed that the adults involved will call the shots and the kids will follow the plan. We who were involved in planning for Amie were all certainly very sincere in our efforts, and we all wanted what was best for her. We just missed one very significant part of the equation--we were moving forward with no input whatsoever from Amie herself.
The plan as it developed for that year (1995-96) was that Amie would use Westview as her home base, with continuing opportunities for social interactions with a new group of fifth graders. Twice a week she would be transported to the middle school for an adaptive physical education class, and two additional times each week she would go to the high school to swim. This was to provide some much-needed physical activity in addition to helping her become acclimated to new surroundings. Since she would most likely be moving on to the high school setting for the next school year, we also made arrangements for Amie and Jeanine to spend one morning per week in the new CD-S classroom with her friends who were using FC on a regular basis.
For a while the plan seemed to be working. Jeanine and Amie met on Tuesday mornings at the high school pool, and, after a good work-out in the water, Amie joined the high school class for a morning of academics. Because Laura Matthiesson (from the Willow Creek FC classroom) had been hired by the Shelby district as one of the teachers, and because her assistants were also strong advocates for the students and comfortable using FC, we felt assured that the level of instruction would be appropriate. We felt Amie would once again be included in a group where FC was being used by several of the students on a regular basis. In the early fall, Amie appeared to be enjoying the swimming and was also actively participating in the classroom discussions, using FC with Jeanine and several other adults in the room. She returned to Westview toward the end of the morning, usually with a big smile, and resumed her usual fifth-grade routine for the rest of the day.
And, then, something began to change. I started to notice that Amie was unusually quiet on Tuesday afternoons, with no interest in facilitated conversations with me, and often no interest in going to the fifth-grade classroom. Sometimes, she wasnt even interested in eating lunch! No behavior problems were being reported, either at the high school or at Westview, and in fact everyone involved seemed to think that she was making a nice adjustment to her new classroom. But I had seldom seen Amie so quiet, and it seemed to me that she was doing some rather deep thinking.
During this period, Amie was making several new friends at Westview. It started with two girls who were obviously leaders among the fifth grade students, and who truly enjoyed spending time with Amie and our three new students. Erin was the more outgoing of the two. Sara was her quiet partner, and they were soon joined by Marie, Katie, Miranda, and others. As the year progressed, it was remarkable to see the impact these girls had upon our program. Within just a very short time, it became so popular to visit our room and interact with Amie and friends, that I had to make "passes" which I could issue on a limited basis, just to maintain some sort of control over the amount of traffic in and out of our room!
Amie was not attending academic classes on any sort of a regular basis, but she did show an interest in joining her friends when they walked past our room on their way to the computer lab. On a day in late September, Amie followed them into the lab, sat down between Erin and Marie, and allowed me to support her hand as she calmly typed, I REALLY LIKE ERIN I LIKE MARIE TOO. I PLAN TO JUST BE LIKE OTHER KIDS. LOVE, AMIE.
Within just a few weeks, another subtle change took place. Amie had continued to enjoy her time at the high school, but was no longer quiet upon her return to Westview. In fact, we were starting to have a rather serious problem with aggression on Tuesday afternoons, and, sometimes, even the fifth grade girls found themselves being targeted for blows. On one particularly difficult afternoon, I isolated myself with Amie where I hoped we would not be disturbed, sat with her on the floor in our old position with my legs over hers, and held the rest of her body as tightly as I could. She struggled and fought, but managed to use FC just enough to tell me that she wanted to go with her friends on to sixth grade at Riverside (the middle school)! Shortly after that, she was able to type on the computer (using FC, of course, but with considerably less support to the rest of her body): KEEP TRYING REAL HARD TO MAKE PEOP.LE UNDERSTAND THAT I NEED TO BE WITH PEOPLE WHO ARE NORML!
And within another few weeks, Jeanine was returning from the high school looking quite discouraged. Amie was having trouble following the classroom routines and rules, was doing less work (as well as less communicating), and was beginning to display behavior that was not acceptable. Everyone was becoming concerned.
We held a meeting shortly after the holiday break in December to review our plans for Amie for the remainder of that year and also for the year ahead. Amie attended the meeting, and I checked with her frequently to see if she approved of what was being said. She smiled and nodded, but declined my offer to provide the needed support so that she could use FC to add to the discussion. She had, however, typed several comments in advance which I shared with the group assembled together that day. In a letter to the special education director, Amie had typed:
I REALLY WANT TO GO TO RIVERSIDE NEXT YEAR. LOTS OF PEOPLE LIKE ME AND ARE VERY NICE TO ME. I AM WORRIED MY REASONS ARENT BEING GIVEN ENOUGH CREDIT.
As a result of that meeting, it was decided that we would find opportunities for Amie to visit the Riverside building, in addition to her phy. ed. classes, at first just walking through the halls until she became more comfortable in that setting. We had increased her time at the high school to two mornings. With the recent increase in significant behavior problems in the CD-S classroom as well as in the pool locker room, it was decided that the swimming times would continue, but Amie would spend less time in the academic classroom. The Riverside principal agreed to work with the special education director to look into the possibility of developing a program at the middle school level that would meet Amies unique needs.
Amies parents remained unconvinced, however. They felt a great deal of fear about the prospect of Amie attending classes at Riverside. The experience at Northside just two years earlier was still fresh in their minds. They had many questions about Amies future. Who at Riverside had an understanding of autism? Who would be able to use FC with Amie? How would the staff and students react to the inevitable outbursts as Amie adjusted to her new school setting, new teachers, new schedule, etc.? Wouldnt everything be much easier for everyone if we stayed with the original plan to move Amie to the high school CD-S room?
In February, Amie confidently expressed to me using FC at the computer, I PLAN ON YOU PREPARING EVERYONE AT RIVERSIDE FOR ME TO GO THERE. To help her deal with the anxiety of the unknown as the year moved forward, I posted her above message on our classroom wall, and then began to add each step forward as it happened:
It wasnt until Amies birthday party at the end of March that I sensed Matt and Sue giving Amies desire to go to Riverside any serious consideration. Amie had never had a birthday party with friends, had in fact never had a friend over to her house for a visit, but I thought the time was right, and presented a plan to her parents. My husband and I had recently sold our farm home (with the outdoor pool), and had moved into a condominium (with an indoor pool, better yet!). I suggested that a small group of fifth-grade friends be invited to my place to swim and, then, perhaps go to Amies home for cake, etc. I was willing to help and was quite sure that Jeanine would also be there to lend assistance as needed.
In the weeks before the party, it was hard to tell who was most excited about the big event--Amie, her friends, or, perhaps, Jeanine and I! The girls chatted excitedly whenever they visited our room, laughing and giggling right along with Amie, teasing her about the presents they knew she was going to like, but doing their best to keep the nature of their gifts a secret--just like any other fifth-graders anticipating such an event!
The party was a huge success. Amie probably liked the swimming the best, and her friends were all amazed at her agility in the water. The girls liked the whole event, saying often and very sincerely, "This is the best party ever!" I was most touched by the thoughtfulness of the gifts the girls had selected, and I could tell that Amie recognized the great care they had taken in making their selections. As she opened the paints, markers, tablets of paper, and other art supplies, her entire body slowed down and her usual impulsiveness seemed to be put on hold for at least a few minutes. She carefully fingered each gift and then set each one aside as the girls eagerly encouraged her to open the next. It all was so strangely typical of a young girls birthday party. No "thank yous" were spoken, of course, but I am sure that each of the girls felt Amies gratitude as I did. As we ate pizza, drank soft drinks, then shared cake and ice cream, I stood close to Matt, who had been almost as quiet as his daughter. Strangely serious and with deep feeling, he said, "I never thought this could happen. I am a believer now!"
Once I knew that Amie would be moving on to the middle school with her friends, I made the decision to read one last book with her, Reviving Ophelia by Mary Pipher. My purpose was to help Amie understand that while she was in fact faced with almost insurmountable problems in her own life, other girls her age had significant difficulties as well. As we read, I paused often and reminded her that puberty might well bring on new and different problems for both her and her friends. Gently, I tried to prepare her for the all-too-real possibility that Erin, Sara, and the other girls who were so important to her in fifth grade might not be able to be there for her in the years ahead. Day after day, Amie listened intently and seemed disappointed when our reading sessions had to be interrupted because of the needs of other students or the demands of the daily schedule. She appeared to be thinking deeply and understanding everything I read and everything I said as I added my own words of wisdom. It truly was a pleasant way to end our time together as the school year drew to a close.
Amie is a middle school student now, with a new teacher, a new aide, a new speech therapist, many new friends, and a wealth of new experiences. I visit her from time to time, and she always appears happy to see me and equally happy to show me her new surroundings. Her body is noticeably more relaxed and controlled and she carries herself with confidence. Everything about her appearance is improved and she seems to fit right in. Her smile comes so easily, along with a fairly reliable yes and no response. Although she is still unable to speak and is not using FC with anyone at the present time, she can actively make choices throughout the school day. She can answer questions in both the academic and social settings and can take part in conversations with both adults and peers.
Obviously, Amie is happy that her wishes to attend Riverside with her friends have been respected. But in many ways, the changes I see in her are so dramatic that I have to believe there are many additional factors at play as well. Considering the complexity of autism in general, and the severity of Amies autism specifically, it hardly seems surprising that there is no single explanation, no "magic bullet" that has brought about such a transformation.
When Jill and I first attempted to use FC with Amie in the spring of 1992, there were many people who knew Amie and felt there was an intelligent, troubled girl hidden somewhere deep within, but there were also those who felt she was severely retarded and badly in need of a highly structured behavior modification program. In the interim--from 1992 as a "life skills" student at Willow Creek to the present as an "included" student at Riverside--many things changed in Amies life.
Different medications were tried, along with DMG (dimethylglycine, a natural food substance believed to have therapeutic value) and vitamin therapy. When Amie first reported via the letter board that she was experiencing painful noises inside her head, her parents learned as much as they could about Auditory Integration Training (AIT), and she was one of the first in our area to experience the benefits of this particular treatment.
When she expressed the desire to attend regular school, the school district cooperated fully, even though everyone knew this particular situation was going to be one of the more challenging ones they would ever face. Teachers, aides, therapists, and administrators all worked to better understand the mystery we call autism and particularly how it had affected Amies development and behavior up to that point. It took the cooperation and support of many people to put together a program which emphasized Amies need for a daily schedule high in sensory input and physical activity. Sensory Integration (SI) became an integral part of her school day. We looked for ways to encourage her to make choices and take an active part in events around her. We set up academic activities that we thought she would enjoy and could handle without undue stress. Throughout every school day and in every setting, we tried to ignore the inappropriate behavior while positively reinforcing every effort to act in ways that were socially acceptable. And, of course, it was Amie herself who showed all of us that what she wanted most of all was to be accepted as just one of the kids!
Shelby is a relatively small community and school district. It literally took most of the village to help this one individual. The question could be asked: Was it FC or DMG or Prozac or Risperdol or B-mod or AIT or SI or inclusion or what?????? The answer, of course, is all that and more, and probably most significantly it was the large number of people who believed in Amie all along, who were able to make the most of Amies personal abilities and determination. Many of us had to change our style just a little. Rather than using behavioral techniques, educational strategies, and medical interventions to bring about a new Amie who could somehow fit into our definition of "normal," we learned to follow Amies lead. We came to an understanding and acceptance of Amie as she is, not how we might like her to be. The results, I believe, are the best we can hope for in such a situation. For, in our acceptance, we came to treat Amie with the respect deserving a real person with thoughts and feelings that are of value. We gave her some say in decisions that affect her life now and in the future; we let her know in every way possible that she is an important person who has much to offer. We have in no way found a cure for Amies autism. We have instead come to recognize that autism is a significant part of who Amie is and that is OK with us. We like Amie, and she knows that.
Speaking for Amie (I hope and trust she would approve), I feel a tremendous sense of gratitude to all the many individuals who have played a part in this particular girls "Coming Out!" And speaking to Amie, a big thank you from the many others who have had exciting new doors opened because of you, and from all of us "teachers"--you have taught us so very much!