Win: For a boy we thought could not speak or understand, Ian has a vocabulary that is quite good, even if there are some unusual gaps in it at times. Ian's spelling is remarkably good, although if he hasn't actually seen a word on paper, it may come out phonetically spelled--such as "rost" for roast, "nee" for knee, and "meen" for mean. But once he learns a spelling, he will rarely miss it again.
His grammar and sentence structure become inventive at times, especially when he enters a long sentence without fully planning it all in his head first. I suppose it is no surprise that he sometimes has trouble properly structuring his output, because, while he can intake whole written pages in seconds, he has to output one character at a time.
Following are some unique word combinations that he has used. Listed first is what he spelled out, followed by what he actually wanted to convey in italics:
I am helpful to mommy in mowing the hair on my head
I help mommy by not moving my head while she cuts my hair.
me seeing too long this homework
I am tired of doing this homework.
the God's word place
the Christian bookstore
the eating dessert place
Dairy Queen
me not have joy. Me need to run.
I am not happy sitting here.
me not need lite. Me need soda.
I don't like diet soda.
mean bigs God place.
campus life meeting
First usage of English was not too smooth when I started talking. Very much better usage has followed as I learned your ways of talking. Quite a bit of what I say reflects what in most cases I have really read in some books with you. Probably I might have improved as time goes on. When my writing will rely on my good flowing English in smooth phrases, then will I really write well. Lastly, I think some of those things that I said are funny too.
| Lyn: On October 28, Ian read some poetry, including a couple of poems written by an autistic young man, so he was very interested in writing a poem himself. This was his first attempt:
Writing rising words in a moment, |
Win: I think many people have believed that autistic persons don't feel the "normal" emotions such as love, affection, hurt feelings, or loneliness. They also have thought autistic people don't pick up the subtle nuances of interpersonal and social relationships.
It is easy to see how this impression could arise of Ian because so many of his behaviorisms seem anti-social or at least strange when he is around other people and because he often doesn't make good eye contact with others.
Nonetheless, we had always felt that Ian was different from other autistic people because he did allow and initiate hugs and body contact with his family and friends with whom he felt close. Once we could get inside Ian, our feelings were confirmed. We discovered so many things about who Ian is!
Ian is a lover. Among the first things he did was tell his mother that he loved her. He waited to do this until she was facilitating his talking. He was shy about saying it, stopping in the middle of his statement to hug his mother and pat her cheek and finally actually verbalizing "mama" rather than spelling it out, an unusual event, to say the least. He told both of his grandmothers that he loved them and finally even said "I love you too, Daddy".
Chosen to be my voice |
Ian is affectionate. He has a girl that he likes and he told her so at the first opportunity he had, when she was present while he was talking. When asked about certain persons, he'll say he remembers them and that he likes them. One of the problems his speech teacher has had so far in facilitating for Ian is that he likes her so well, he stops to hug her. Since he is twice her size, at least, this has proven to be a disruption in the proceedings.
She loves me so so much |
Ian is sensitive to others' feelings. At one friend's home where we had Ian show his new communication skills, he spelled out "I'm bored." This was to the amusement of our hostess, who said she'd had hundreds of kids sitting on her porch before, probably wishing they could say the same thing. Ian pondered that incident and later said he was sorry that he'd said that. A couple of weeks later, in a similar situation, he said, "I'm not bored."
One of the first games he has learned to play is "20 Questions." His teacher was visiting our home to practice facilitating before the school year began. Since both she and Ian were nervous and things were progressing slowly, we suggested playing "20 Questions" as something simple to do that would help break the ice. We noticed that she seemed to guess the object, person, or place Ian was thinking of every time without a miss.
Afterwards, we asked Ian if she was really getting all her guesses right, and he said no. When asked why he always said yes to her guesses, Ian said he was being nice. He didn't want to hurt her feelings. (This in contrast with the way he plays the game with our family, where he is quite competitive).
| Ian (September 21): Me might not so Christian act today when I hit Mommy in the face. Lyn: What do you want to say? Ian: I'm sorry. My heart feel good when I said I'm sorry to Mommy. |
Ian is a perfectionist:
Ian: When I come home from school, I always want no difference in my work from the other students, quite shorter lessons though I might have been given due to my autism. I want just as much preparation as everyone else. Quaking in my heart is the fear that I might miss something important. I don't want to miss anymore than I already have! Anything that I do, I want to do correctly. Quaking heart in the chest demands no less. Quaking hearts can be hard to live with sometimes. Risking things and trying new tasks really become difficult first steps in my life because I fear less than perfection will result. Youthful exuberence would have me diving off the diving board into the pool like other kids, but I can't make myself do it. The first thing I ever wanted to do after starting to use F/C was quite woo a girl, but I fear rejection because autistic behaviors could keep me from being a perfect escort. Perfection is not possible, but my quaking heart doesn't know that. From church I return to home and school quite excited about wonderful insights from God's word and expect immediately to see them reflected in my world. When they wouldn't debut in my actions and wouldn't erase my thoughts or young babe in Christ sins, I would go bananas and act worse than before. Thank God He doesn't expect perfection, eagerly waiting my sins to forgive. Why I can each day deal with my quaking heart is God's patient love for me. |
Ian also is a deep thinker. I see him composing at the computer keyboard, not watching the keyboard, but staring off in space, seemingly seeing the words he wants to type somewhere in midair before putting them on the screen. He has written so many things that show his ability to think deeply and carefully.
Foggy ideas have I about being free from bad habit, |
Ian has a sense of humor. He has always tended to tease persons who have worked with him or taken care of him. When expected to do something he knows how to do, sometimes he simply won't do it or will do something different, and then giggle about it. Sometimes hearing his little laugh in some other part of the house is a signal that he is into something he shouldn't be into, and that he knows it.
Since beginning to communicate, he has displayed a somewhat puckish sense of humor in some things he says. For instance, arriving home after the "I'm not bored" incident showing his concern for others' feelings, Ian declared that he was "one smooth character" for being so polite. On another occasion, after reading the first fifty pages of a book on adolescence and sex, he commented, "Goodby innocence!"
Whenever I enter a room he is in and am carrying food, he feels he should get his share. The other day, after he had already had his snack, I came in and sat down with a granola bar. He was craning his neck to see what I had, even though it was hidden in the palm of my hand. I told him to sit back, and I lay on the couch with my knees up so he couldn't watch me eat it and I couldn't see him trying to watch me. Afterwards, he said, "me good at not seeing the food in your hand."
When I tease him, he sometimes has a hard time catching on to that. For instance, once I told him I was a good cook because our supper was so good and I had been the one to get it at Kentucky Fried Chicken. He started to correct me, then stopped and said, "you are teasing me."
Another time, his speech teacher was telling him he didn't have to answer peoples' questions if he didn't want to--which he hadn't realized. When I checked to see if he had understood, I added that this was true for everyone except Daddy. This brought an immediate biting of the hand because he got mad at what I said. When I said I was teasing, he regained his good humor. Later I asked if he had a hard time telling when I am teasing (he's not the only one with this problem), and he said yes. He then asked, "Why tease?" He was satisfied with the answer that teasing is something one does to someone they like, and even admitted that he also teases his brother and others.
The summer between my junior and senior years in high school, I went to a youth camp. This fact in itself is of little importance; however, while I was gone, a change occurred in our family that marked perhaps the most important event of my entire life. First, I must give some background. I have a brother who is four years younger than me. As a baby, he was a quick learner. By the age of two he had a rather extensive vocabulary. The whole family was excited because of his rapid progress. Shortly after his second birthday, however, something happened to Ian. He began to associate with other children less and less. He seemed to spend lots of time by himself doing basically nothing. His vocabulary began to diminish rather than increase. Finally, my parents took Ian to a child psychologist. Our worst fears were confirmed. Ian had autism. My parents were shocked and confused. I, being only six years old, did not fully understand the situation. All I knew was that there was something very wrong with my brother. My parents prayed for guidance and did the only thing they could do: love Ian unconditionally. As Ian grew, nothing changed. He had not spoken a word since he was two years old. He was placed in classes for severely and profoundly handicapped children. Any time he learned a new task, such as putting a peg in a hole or a piece in a puzzle, it was considered a major breakthrough. Still, we always remembered the intelligent child he once was, and occasionally, it seemed that a flicker of intelligence appeared from behind an insurmountable wall to once again grace his features. Ian's simple life continued until that summer when he was thirteen years old. When I returned from youth camp, there was a piece of paper on our dining room table. It had an alphabet, the numbers from 0 to 9, and some punctuation marks on it. Little did I know that this piece of paper would change my life dramatically. While I was gone, my parents had learned of a new "cure" for autism. I say this somewhat mockingly because over the years, we had heard of countless numbers of "cures," none of which had amounted to anything except wasted money. This time, however, the technique did not cost any money, so my parents decided to try it. The idea is very simple. My brother points to the letters on the paper and spells out words. He can only do this, however, if someone is supporting (not directing!) his arm. Using this technique, Ian could finally communicate with us! At first, things went slowly. He could only answer yes or no questions. Eventually, Ian could write complete sentences and, despite many problems with grammar and sentence structure, he is still improving today. Ian had learned how to read and how to do simple arithmetic during the time that he was lost to us. His intelligence had never gone away; it had just been tragically hidden. In the fall of that year, Ian entered the fifth grade. There, he soaked up knowledge like a sponge. He has a photographic memory and is a speed reader. Toward the end of the year, he began taking some classes at the junior high level. Now, this year, he is enrolled at the high school. He is only taking four classes, but that should be a full load for him. As Ian tries to adjust to high school life, he is having some problems. Like any high school freshman, he wants to go to dances, basketball games, and other social events. Sadly, he is having to realize that he cannot participate in these kinds of activities like a normal student can. Another problem Ian has faced is pressure to do well in school. He feels as if everyone is watching him and expecting him to breeze through his classes. Indeed, Ian is not totally wrong in this assumption. Some people seem to forget that Ian still has problems. He may be smart, but he is still autistic. He still has many of the struggles he has always had. However, my long lost brother was found again, and I praise God for this fact. --Todd Wetherbee September, 1992 |
What is Ian afraid of?
Ian: Quite often I fear an early death by my dad. He still is by far my first and best facilitating ticket to the rest of the world. Others facilitate well for most things, getting delivery of my real thoughts okay. My dad , however, gets my every word, even a hard and difficult vocabulary, like "pugnacious". Well, see what I mean? I worry about his eating the wrong foods and not getting enough exercise. I fear a heart attack or cancer directly and Altzheimer's disease indirectly. My grandfather and great grandfather died of Alzheimer's. My best voice is my dad and I fear losing him. Also, I fear Sandy, my school facilitator and wonderful friend, will not stay on as my school voice. Grades will drop fast if that happens. Until somebody else at the school learns to facilitate as well as Sandy can, what transpires in the class room won't cast a true light on my intelligence. I fear that people won't understand my autistic actions and thus won't believe in my smart mind or in F/C either. If that gets around as a prevalent attitude, I and many, many other people will be imprisoned within ourselves again without parole for life. I fear that yet someday I won't have dates with girls, so that I'll never marry or never have a family either. I just get into a depression thinking about girls and sex. I quite often fear quietness might again envelope the great life that has come to me over the last two years. Uneasy lies the head under the crown of F/C. Please always have someone in my life who believes in me. When I see the smart people in the nursing home where Dad does F/C, and think about how their whole lives were spent without anyone believing in them, I can't believe how lucky that I am. Finally, I fear that fun and eagerness for games that I have won't always value be given to by the people in my life. So much of my self-concept is helped by my ability to do well at games. I love to win, but I don't need to win to feel good about myself, just be able to compete. Lyn: (November 13): Did you talk by yourself with the Canon today? (Later that same day) Lyn: Were you happier before you could talk by facilitating or after? |
Win: When Ian knows exactly what he wants to say and feels comfortable with that, his arm feels as light as a feather and his finger fairly flies around the paper as he spells what he wants to say. But when he is saying something of a personal nature, his arm begins to feel very heavy, and he is likely to break off in the middle of his sentence. He may even attempt to stand and bolt from the room. A word of reassurance after I've intercepted or retrieved him, if necessary, and Ian can generally finish his statement. If he is feeling unsure for other reasons about how the statement he is currently spelling will be received, his arm will again grow progressively heavier. In other words, the content of what he is saying definitely affects the ease of the facilitation.
Note from Sandy home (October 9, 1991): The English assignment was to describe a disappointment. Ian had a hard time with this. He said, "She not," and then could go no further. Later he talked about being disappointed because he cannot talk with his lips. "Me not into enjoy English," he facilitated. Note from Sandy home (January 6, 1992): After homework [today] Ian said he wanted to "speak some more discussion." I asked what he wanted to talk about. He said, "I so much need to talk with my mouth." I told him we all hoped he might some day. He said, "I try but it might make me too emotional to say things about my feelings." I told him it is often difficult to share feelings. I reminded him of the joy he feels when he communicates with the paper or the Canon, and that with practice things will become easier. He said, "Perhaps I will practice more too." I asked if he wanted me to tell you how he feels about this. He said, "Please yes, they must know my fear to talk with my mouth." He started rocking and vocalizing. I asked if he wished to say more and he said, "Not too much now." |
Win: Another factor that affects facilitation is facilitation tool itself. As I write this, we have not yet had an opportunity to use a Canon Communicator, which seems to be the electronic device of choice among other families and schools doing facilitation.
We began with an 8 1/2-by 11-inch sheet of paper with the alphabet and numbers on it, along with a space character and a few written words or phrases like "stop, "more," "I don't know," "yes," and "no." Often, while we are facilitating, Ian will be seated at a table with his elbow resting on the table. After a few weeks, it finally dawned upon us that we were expending a lot of extra effort because Ian couldn't point to all the characters on the paper without shifting his elbow. I often found myself using one hand to manipulate Ian's elbow, as he was reluctant to shift it himself when he was in a comfortable position. As a result, he would only vaguely point in the direction of the letter he wanted, but couldn't reach.
Consequently, we redesigned our paper keyboard on half the space we had previously used. We also put the numbers on the same paper, but grouped them together in calculator format separate from the letters. Through trial and error, we checked that Ian could reach all the letters without moving his elbow. From the same position, we asked him where he would like to locate the other words, phrases, punctuation marks, and the space bar. He pointed to where they could be most easily reached. The facilitation process became much easier after that adjustment.
Extremely crucial to the success of facilitated communication is the confidence in Ian and the facilitation process itself on the part of the facilitator. If any skepticism exists, Ian immediately can sense this through the facilitator's touch. What results is that very little successful "talking" takes place. The most successful facilitators with Ian are definitely those persons who plunge right in, full speed ahead, and fully expect things to work.
While Ian communicates very well through my facilitation, we have had our moments of hesitation. For example, there was a time Ian was confused about how he should respond to questions he couldn't or didn't want to answer. At first, he would just make something up rather than saying, "I don't know," or "I don't want to answer that." Often times someone would be present who did know the correct answer, or else we would know the answer before asking the question. When he began coming out with all these wild answers in such situations, I began to have a crisis of faith in the process. Soon Ian couldn't give answers at all under those circumstances, as my doubts were felt by him.
Fortunately, we have worked our way through this mini?crisis. Ian is realizing that making up answers is not a good thing to do and is less prone to do so. Also, we have worked out a system between us whereby Ian types the word "no" if we have made some false steps along the way. We then back up to the beginning of the last word and try again. Ian is quite patient about these false starts. For my part, if I am feeling doubts about our current direction, I ask Ian if that is right, sometimes repeating verbally the sequence of letters or sounds generated thus far. He responds either with "y" for yes or "no" for no, and we proceed accordingly. I try not to ask too often, as constantly questioning whether the letter or letters so far are correct tends to throw Ian off after a while.
I sometimes find myself anticipating what Ian is going to say next. In such a case, I find myself directing his finger towards the next letter which I have anticipated, usually not by overt pulling of his hand, but rather by shifting my hand to make it easier for him to move in a certain direction or, without realizing it, shifting the paper with the letters on it with my other hand to make it easier for Ian to reach a particular letter. This, I realize, is a sensitive issue because people tend to be skeptical of the facilitation process anyhow and suspect that the facilitator is actually doing the pointing.
In Ian's case, he quickly counteracts me if he has something else in mind, but otherwise doesn't mind a bit, always having been one to let others do something for him if he can get them to do it. In fact, at times when his hand is heavy, this subconscious aid on my part sort of works like lubrication to the process. When his hand is light as a feather, I really don't have time to anticipate ahead much. I would judge that, for the most part, I am aiding him with the physical mechanics of communication rather than influencing him in what to say.
If I have any doubts or I find Ian starting to wait for me to lead, I take great pains to lift his hand straight up between letters and to wait for his lead. The longer that I have facilitated for Ian, the more I have become familiar with his word patterns, which are quite unique to him. What he says makes sense, but doesn't always reflect conventional figures of speech. I very often do anticipate correctly what he is going to say next, but sometimes he really fakes me out with the direction he takes, particularly of late as he has gotten braver with his usage of slang and more sophisticated vocabulary words that he has picked up somewhere along the way.
Ian (March 6, 1993): When I remember my past years trapped inside myself, I about am unable to sit and write of the awful frustration of not being able to let anyone know of my intellect. Thanks to God's providence, my darn good mind is now easy for everyone to see in action. I can't really express the way I feel or how perfectly amazing have been the alterations to my life. I am able to tell you delightful little events in my life that your knowledge of might help you understand a tiny bit about the impact facilitated communication (F/C) has had on my life. Each time I have a somewhat important communication to do, I get very excited and as often as not have to leave the room for a while. Talking is still such a miracle from God to me that I sometimes am like Peter walking on water. I suddenly see what an amazing thing I am doing and begin to panic and get up and run away and act out my autistic habits from the past. But I am growing in my faith in God every day. Also, the more that I facilitate, the more I know that this miracle is true. While I have been writing this, I have realized how much my faith in God has helped me to communicate through F/C. Like Peter, I need to keep my eyes on Jesus. |
Win: I am going to go out on the limb and say that if one wants to be an effective facilitator, one should worry more about being too hesitant in trying to avoid undue influence than one should worry about possible undue influence itself. Again, I realize this may upset the skeptics, but, at least in Ian's case, he is not going to let me change his message for him. I don't think I could unduly influence him, but I could mess him up through skepticism and excess worry over undue influence.
Since I began writing this section, The Canon Communicator has arrived. Ian likes using it as it allows him to differentiate between upper and lower case letters and to use many more types of punctuation. Also, he is simply enthralled with pushing buttons for the joy of pushing buttons. He wants to do the right things, and thus is a bit tense while using it. This translates into a very heavy hand during facilitation, but we are trying to work on lightening up his touch.
Vastly ways to facilitate exist but what matters is the lack of skepticism. Very much you have learned to be confident in me. When I might say something that is personal, I sometimes get embarrassed about what I might say. Good target has me learning very much longer to talk without wanting to leave. Really I might try to trust people more when they skeptical. When my night Bible reading and praying really works, it is because I have confidence in God. So would it help if someone has faith in me. Valuable writing will be more better be when someone likes me too. You love me and so I talk best with you. Quite a few people love me too, but are more skeptical.
Win: Mercy, mercy! How the events of our lives have blown right past our capacity to record them as they are occurring.
Ian's school placement this fall was in a severe and profoundly handicapped special needs classroom. Ian's speech therapist and his classroom teacher were quite aware of the developments of the summer of 1991 involving facilitated communication and Ian's remarkable reading skills. Both had taken great pains during the weeks before school to visit our home several times and to begin themselves to facilitate with Ian. However, it soon became obvious to everyone that this class placement wasn't going to work. I guess that opening a window into an autistic person's mind is much like opening Pandora's box. Nothing could be the same again. Now Ian was strongly expressing a desire to be in a regular classroom of some type.
Lyn (September 19): How's school going? |
Win: His teacher couldn't possibly spend sufficient time with Ian to explore all the possibilities opened by facilitated communication. This was not for lack of effort on her part or on the part of her aides, but simply because of the demands of the special needs classroom. Ian's speech therapist did yeoman's work trying to find reading material for him, borrowing copies of Weekly Reader from this teacher and other books from that one, all of which further whet his appetite for more normal schooling.
One of the fifth grade teachers offered to let Ian attend his class for as much of the day as would work out for everyone involved. As a result, the speech therapist received permission for a week off of her regular duties to take Ian to this fifth grade class during the mornings to see how things would work.
Lyn: (September 26, two days after starting fifth grade): Do you want to say something? |
Win: I must admit that by this time our heads were spinning at the swiftness of these developments. Like most parents of autistic children in most school systems, we have had occasional differences of opinion, some quite heated, with our school system over what would be best for Ian. In most cases, these problems probably arose because of the strain between budgetary considerations and the special needs of one child versus the resources available for all other special education students. Sometimes the problems were due to misunderstanding between both parties on what had been agreed upon to be done, especially if it was not put in writing. The speed with which changes have been requested and agreed upon during this school year have thus far been astonishing and very gratifying to us.
Fifth grade is the highest grade classroom in Ian's school building and thus the closest class available to what would have been Ian's normal placement in the eighth grade. Both Ian's teacher and his speech therapist thoroughly briefed the fifth grade class on what to expect from Ian behaviorly. They also explained about the recent happenings in Ian's life.
During that first week, either Ian's mother or I also sat with Ian while he was in the fifth grade classroom, to offer him further reassurance. He sat at a small table in the back of the room behind the other kids' desks. This table could accommodate Ian and two or three adults.
As the week drew to a close, it was apparent that the chemistry of the classroom was right. The teacher was excellent at allowing Ian chances to answer questions and participate without in any way disrupting things for the rest of the kids. Ian was on his very best behavior, obviously completely absorbed in the learning experience. The other kids were very friendly, going out of their way to stop by and say hello, causing Ian, with a big grin, to type, "me poplar."
At the end of the week, a meeting was held between one of the special education administrators, the speech therapist, Ian's special needs teacher, and us, his parents. By the end of the meeting, we had agreed to let Ian attend the fifth grade class for about two and a half hours per morning, four mornings a week. We had also agreed on a good potential facilitator for Ian during those hours, Sandy Webb, a woman who has known Ian since he was a baby and of whom he thinks very highly. Within a week, Sandy was on the job and doing extremely well facilitating with Ian. She attends the fifth grade with Ian, relays his comments and answers when Ian is called upon, helps calm him down when he is distressed about something, and spends some time helping him do homework at school. She also administered the Iowa skills test to Ian, on which he scored the following grade levels: vocabulary??7.3; math??5.9; and reading??6.2.
During the week before the full-time facilitator began her duties, Lyn facilitated three mornings and I facilitated one for Ian so he could continue attending fifth grade without a break. We knew he would be very disappointed not to be able to go right ahead in the fifth grade after that first successful week. We also helped during the first week the new facilitator was on the job, but it soon became clear that our help was no longer necessary. Thank goodness! Fifth grade seems more formidable today than when we took it a "few" years ago.
| Ian: (commenting on his first day at school with Sandy as facilitator): I did good in English. Sandy was talking with me. She did very well! Finally I have a facilitator! Again I knew good my math. Me flying high about today. |
Win: Ian doesn't go to the fifth grade on Friday when his regularly assigned class goes swimming at the YMCA. Though he loves to swim and is very good at it, Ian quickly decided he didn't like missing the fifth grade class every Friday. When we explained that he needed to be patient while we eased into the new experience of fifth grade, he wasn't convinced. In fact, he tried at least twice to avoid the severe and profound classroom altogether by going straight to the fifth grade classroom by himself. One of those times he was so successful at sneaking away that he had the whole school looking for him!
I think we have finally convinced him that the way to escape the severe and profound class is to do well in that class, rather than to stage a rebellion. He is exhibiting some patience and we are working toward including Fridays as well as some afternoon times in his fifth grade experience.
School has been the best thing that God has done for me. I really can't begin to describe how sanity of my mind holds because of honestly knowing that I am able to perform like normal kids. Happiness is mine because I going to school and really am doing well.
Win: By January, 1992, it was clear that Ian had coped very well in the fifth grade. He received his first report card ever and it was filled with A's and B's, honestly earned. He has been taking reading, English, mathematics, and social studies. His reading and English skills are already strong and so he sometimes becomes bored with those topics, though he enjoys some of the more challenging assignments, particularly those that require some creative writing.
Mathematics and social studies usually involve new concepts and information to Ian. He absorbs the math very easily, almost without effort. He also is eager to learn history from his social studies classes, as well as enjoying the commentary on current events. Even though he misses every Friday and sometimes misses other material that is covered in the afternoons when he has returned to his special education class, he manages quite well in keeping current with the rest of the class.
Test and quiz taking has sometimes proven to be a problem. Some of the problems are due to the fact that studying and remembering key facts are a totally new thing to Ian. At first, he felt that just reading the material once should be enough to prepare for an exam. Even with his photographic memory, this did not prove to be sufficient preparation.
Note from Sandy home (November 11, 1991): Ian had a good day. He said he hadn't read the story very well and couldn't answer many questions. He said, "Mommy told him he should try harder and she is so right!" Lots of facilitation today--15-16 words at a time. He did repeat a few times on the need to study harder, etc. . . . Ian did seem more agitated after the morning sessions. We spent time talking about being ready to answer questions by studying harder. I think he really felt bad that he hadn't read more closely. He knows he is responsible to do the work. He told Mr. B., "Today I study more. So sorry I not read my story better." He also needed reassurance that I was not mad. |
Win: Further complicating the situation was a tendency on his part to just not read material he found boring or silly. We soon found that we had to double check that he was actually doing the reading.
Note home from Sandy (October 16): As you can see from our facilitation today, Ian was very uncooperative. He repeated the phrase "I in bad mood" several times. From Sandy (October 17): About the workbook vocabulary study, Ian facilitated, "This is too easy. Me not into encyclopedia! Me not into dictionary." I told him sometimes we need to study things that do not interest us to learn new things that help in communication. |
Win: As we finally began showing him how to review material for tests, we ran into another snag, as he thought that the test questions were going to be the same as the review questions we used to study for the test. He got a bit upset on the first test he took after doing review when the test questions were different. I think that by now we have worked through these types of problems fairly well, at least to the point where Ian understands the test preparation and test-taking cycle a lot better.
Lyn: (November 14, 1991): I heard you didn't have a good day at school today. |
Win: Ian really likes to do well on exams and assignments and seems quite competitive. After one of his earliest tests on which he did poorly for some reason, he really amused us by commenting, "I in grade trouble." I think he was thrilled to be able to make that comment, as he was never able to compete for grades before or even worry about them--things he has watched and heard normal kids like his brother often deal with. His major problem in class has been emotional in nature. When unexpected or exciting things happen in class, he sometimes has simply been unable to curb some of his autistic behaviors.
Note home from Sandy (November 19): We had good facilitation in class. We had a group activity which Ian enjoyed but found overwhelming emotionally. He answered questions well but became very vocal during the session. At break he totally lost it. He ran to the library and was screaming. I took him to [the special education] class for about 15 minutes. He jumped on the ball and ran a while. We gave him some banana and crackers after he settled down. He then facilitated that he was so happy for the group he couldn't control his screams. We talked about new ways to handle the feelings, good or bad. He said he was embarrassed about his inability to keep control. He wants to but just cannot. We mentioned several ways to talk about his feelings or to tell me when he felt overwhelmed so we could have a break to help him regain the quiet control. He said, "Me know I must do better." I hope we can find a new outlet for all of these pent up emotions. He is sure trying to be in control. I can see the anguish in his face! |
Probably the toughest part [of being autistic] is the constant effort to hold down my autistic behaviors. I heard someone say that about ninety percent of the time autistic people successfully repress these behaviors. Actually, I think it is more like ninety-nine percent of them that you don't see. I rarely can relax and ease up on my controls. I am always trying to gain control of my nagging actions damaging my image.
Win: He also got quite upset when the school brought him a desk like the rest of the children in the class, thinking he would like that. The problem was no warning was given to Ian about the switch before it was brought to the classroom, and he felt there wouldn't be enough room for both he and Sandy at the desk.
Note home from Sandy (November 18): Ian's new desk came. He didn't want to sit at it. After our break we did sit at it but he got agitated. He again began a sentence on his own while I was moving books to his desk: "sueSUEsue b." I helped facilitate the rest: "Sue may like my new desk so much like (?) Stupid me now like it. Me not need it. How might I say to Sue no desk? Might I keep my table?" I told him the desk was to help him feel like the other kids. He still insists it is "stupid so stupid my new desk." Lyn: We asked Ian about his new desk--if he liked it. |
Win: After these episodes, Ian feels quite badly about his loss of control. He visibly tries to maintain control under such circumstances and does surprisingly well, all things considered. Since starting to attend the fifth grade, he has had to deal with many people coming to observe the class because he is in it, including a reporter and photographer who did a wonderful two- page spread about Ian in the local paper. Also for several weeks, a student teacher was in the class doing much of the teaching and test giving. Another week, his regular facilitator was on vacation and he had a substitute whom he liked, but with whom he couldn't facilitate nearly as well. As a whole, he did quite well in negotiating his way through these tricky waters.
Finally, another word about the many people in his school who have been a part of making his school experiences this year a possibility. His special education teacher, his fifth grade teacher, his speech teacher, his facilitator, the school principal, the special education administrators, the other fifth graders, and the aides in his special education class have all bent over backwards to help Ian succeed. We are grateful they all have been very patient with his problems and his adjustments. They have been thrilled for him and are pulling for him to continue to do well.
I really struggle sometimes with my emotions. For sometimes I so ebullient become that I can't control my actions. Yet perhaps I mostly am in control and am getting better about holding on to my emotions perhaps more each day. Doing a good job on my school work too gives me great satisfaction. Good reading skills helps me so much in much of my school work.
I too want to thank all those people who have helped me so much. When I get out of control and disrupt things everyone has tried really hard to help me. It makes it easier for me to get over my troubles. Too, you and mommy help me so much by talking to me about my feelings. God also helps me very much when I remember to ask Him to. So really I have many helpers to give me some special support. During the school day, I so know that everyone is likely thinking of me and praying for me. That's why I am doing so good. Ready am I to try harder classes in junior high or high school.