Win: It is late January, 1992. I am sitting here at my desk in a stunned state of mind. I had agreed to spend an hour each week at Ian's school trying to facilitate communication with some of the other kids in his special needs class, as well as with some of the kids in the moderately handicapped class across the hallway. Today was the first day I spent such an hour. Even though I have complete confidence in this method of communication, have seen it work with several autistic children on video, and have myself facilitated with two other autistic children besides Ian, I wasn't prepared for the level of success we experienced this morning.
Sue Leedy, Ian's speech teacher, suggested I spend a half hour in each class, trying as many children as possible to see if any of them adjusted well to facilitated communication. I will continue facilitating next week with those I couldn't do today.
I managed to see five kids in my hour this morning. Two of the five have self help skills and are verbal, but have performed at a very low level of achievement, as illustrated by their classroom placement. Each of them was very eager to facilitate and in just a few moments exhibited language and math skills far beyond anyone's expectations.
A third member of the severe and profound class, renown for his constant talking, carried on two conversations with me simultaneously--one verbal and one facilitated. Often they were related and intertwined in subject, but not always. Interestingly, the facilitated conversation was the more coherent communication. I think he was delighted to be able to do twice as much talking as usual in the same span of time. I was unable to judge whether he will be able to perform at a higher academic level or not, based on the short time I spent with him this morning.
The fourth child didn't seem to grasp the idea of using the letter board to communicate at all and just wanted to identify the letters and numbers by name. The final little girl, however, communicated exceptionally well, amazing everyone with her vocabulary and language skills. She spelled "delighted" correctly, including the silent "gh." She indicated that she had learned to spell by watching as her parents read her books.
None of these children have been diagnosed as autistic and only the boy who didn't respond well would possibly fall into that category. Yet, I feel that whole new vistas of achievement and self respect are about to open for at least three of these five children, much as has happened for Ian.
Ian is in his fourth day of going to the fifth grade class full time, and has done pretty well. He is nervous about science, since he knows little about the subject, and has needed his self-confidence boosted somewhat each day so far. He does seem to be adjusting fairly well. He received his second report card, again doing very well with all grades of B+ or above. He received a Trivial Pursuit game for Christmas and does very well playing the game. He answers many questions that we had no idea he could possibly know. Other answers that he misses help us to see what areas of knowledge in which he might be deficient. He enjoys the competition very much.
We have had very limited success in getting families of autistic children outside of our immediate community to try facilitated communication. The autistic family support group in Ft. Wayne which we attend has had very poor attendance lately. I did help one little eight-year-old girl begin facilitated communication with her mother at one meeting of the support group. As of five weeks later, she was beginning to communicate quite well with her mother.
Another family we contacted has a son of high school age who has a verbal vocabulary of about sixty words and can say three- word sentences. This boy's teacher suggested that using facilitated communication might detract from his ability to talk verbally after a well respected professional in our state told them that facilitated communication usually only helps non-verbal children. This advice was frustrating to hear since the autistic girl in Ian's class fits almost the same profile as their son. Our experience with her is that facilitated communication works very well. If anything, her speech has grown more appropriate since she began facilitating.
While we can appreciate the ups and downs families of autistic children experience as they look for ways to help, we know facilitated communication works, and we desperately wish for others to learn it. We are still awaiting this family's response concerning our offer to show them how to facilitate with their son. We hope he soon will be doing things like telling them he loves them, asking questions about death and religion, reading the sports pages and commenting on his favorite teams, and attending school classes more on the level of his actual academic ability.
So where are we after six months? We are delighted and awed with Ian's incredible emergence from his isolation from the world around him. The swiftness of his daily development sometimes keeps us struggling wildly to maintain our balance, especially as prior to the last six months, a positive change in Ian's life might have taken months or even years to occur. But we love it! We are also pleased about how Ian's experience promises to lead to the helping of many other children in our own school system. At the same time, we are frustrated that so few autistic children whom we know of in our geographic area have been given the chance to use facilitated communication. We are sometimes disheartened with the difficulties we have had in even locating their parents, much less in convincing them to give facilitated communication a try. We are somewhat mystified as to why there have been specials on national television about facilitated communication, and yet state or national publications from organizations concerned with autism have done very little to inform families about it and about how dramatically it can help them.
Having a feeling of frustration about a slow spread of the so exciting news about facilitated communication so easy to understand. But I am still sure that the doing of the spreading of the word will happen. Too, hopeless we aren't at school. So many kids are doing facilitated communication that word will have to get perhaps spread far and wide. You good knowledge are spreading to the rest of the world. Quite a good response has been gotten so far.
Win: In addition to "20 Questions" and Trivial Pursuit, we've played many games with Ian, including Scrabble, Checkers, Yahtzee, chess, Stratego, and many word and vocabulary games. Ian's favorite is chess.
We didn't explain the rules of chess to Ian at all, but just let him read the instructions inside the game box cover. He played against his brother in his first game. Not at first realizing that pawns capture by moving diagonally, he lost two key pieces almost immediately. He also got very aggressive with his queen and lost her. However, he showed a real flair for the game. He castled to gain a much better board position at a key point of the game and eventually regained his queen by moving a pawn the length of the board. He played opportunistically, putting Todd under check as often as he could. Before Todd realized that he needed to take Ian seriously, Ian had won his first game! They played a second, very competitive game, with Todd winning, but not before Ian very nearly had him checkmated.
Ian also loves to play Trivial Pursuit. When a shorter game has been needed, he has enjoyed playing Yahtzee with Todd. It is certain that Ian is very competitive, although he has thus far also been a gracious loser. Whether he wins or loses, Ian always plays any game with great intensity, and the success or disappointment of the moment is reflected clearly on his face.
I give doggone good fight before I lose a game. I really love to play games so much. Perhaps someday I can elevate my chess to a kind of contest where I can play with good players at their high level. You not high level games play with me too much yet. Too, fine card games do delight me.
Ian also is active in sports, despite the fact that he is not always able to make his body cooperate physically. How many times have I seen Ian standing under a basket with a basketball in his hand, wanting to shoot it, but totally unable to get it up anywhere near the rim. Still, his imagination is not held captive, even when his body is, and Ian running around our house carrying a small, red plastic ball and pretending to be Kevin McHale of the Boston Celtics is a common sight.
Swimming has also been good for Ian, even if he was not always in agreement about going swimming on Fridays since it meant missing the regular fifth grade class. Watching him doing his own version of water ballet in the deep end of the pool, twirling and spinning and splashing in a world where he seems totally in tune with his environment, is beautiful to me.
I am a zealous game player and I love to win. Also, I run in one mile fun runs, though I am not fast. I like playing baseball too. Again, I am not too good, very worse player in my league. I am very good at chess and Wheel of Fortune and Monopoly.
Win: It is late March. Todd couldn't afford to miss a full week of classes, so we left him with friends while Lyn, Ian, and I drove to Florida to visit my mother during the last week of February. No one seemed concerned about letting Ian out of a week's worth of classes, probably for two reasons. First, Ian is handling the fifth grade work so easily and effortlessly that we all recognized we could cover the missed material ourselves while in Florida.
Secondly, we had just undergone about two weeks of intense emotional outbursts by Ian almost every day in school, sometimes several times a day. Though we eventually worked our way out of this stormy period of his new life, both Ian and his facilitator were emotionally and physically drained at the end of the two weeks. I think everyone welcomed the chance for a change of pace from what was becoming a tough daily routine. Happily, things had smoothed out considerably before we departed for Florida, largely due to our ability to talk to Ian and work through his problems with him.
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Note home from Sandy (March 26): What a weird day. Basically Ian was defiant and downright ornery! He folded his arms across his chest and refused to budge to type any work! He says: "It's too easy." "It's stupid." "I really resent doing it. I refuse." "A sit-in." He even giggled when I told him he'd better get busy. He absolutely would not type anything (work) except for the math fraction sheet. He didn't want to do it, either, but Mr. B. came back to see how he was doing. He perked up and did the page quickly. Stinker! Note home from Sandy (March 31): Ian was pretty mellow. Worked well. After lunch the other kids came for social studies and math and Ian got so excited he started yelling and hitting the table. He had to leave for a while but eventually was able to return to class. He also said he feels bad because the "thoughts" were coming back today. No further discussion concerning thoughts, but obvious from facial expressions and hand biting he was fighting some feelings. Pretty rowdy at the end of the day. Note from Lyn to Sandy (April 1): Ian was disappointed about having "bad thoughts" yesterday and that's why he was rowdy and noisy, he said. We told him that the bad thoughts may continue to bother him--that everyone struggles with that, even Christians--but that he could ignore them or pray about them. He seemed to feel better. I guess he wants miraculous deliverance! |
Win: Upon our arrival in Seville, Florida we found not only my mother but also two pairs of aunts and uncles that we hadn't seen in years, neither of whom Ian had any recollection of ever meeting. We had a great time, with Ian's new relatives being absolutely fascinated with him. He put on his most charming self. Aunt Harriet had an idea that she might ask IBM to donate a new lap top computer to Ian, as we were telling her how Ian wants to go to high school next year, and that a lap top would be a perfect tool for him. (Uncle Dick had worked for IBM for many years.) She had Ian answer some things using her electric typewriter. He was fascinated with its ability to self erase and had no problem typing on it, with facilitation, of course. He wrote some nice answers to her questions and even wrote a cute four-line poem on the spur of the moment. (IBM has since responded to her inquiry by saying that they only donate equipment through organizations, rather than to individuals. We plan to encourage our school system to find out more.)
My mother and Aunt Fay are great game players. They introduced Ian to playing card games such as hearts and solitaire. He loved playing these games so much that as soon as he saw enough people together, he immediately would clamor to play a game. Aunt Harriet is not much of a game player, but she became Ian's facilitator while he played. While he couldn't yet facilitate words with her, she would arrange his cards and he could point to which card to play with her hand on his wrist. When he won more than his share of games, we accused him of having beginner's luck.
We were in a trailer court and everyone was within easy walking distance of everyone else. Rather than visit a lot of tourist sights, we enjoyed the weather and let everyone get to know Ian better. It either rained or was too brisk to hit the beach much, but nobody really minded. Altogether, it was a fine visit.
Really so much fun to meet the aunts and uncles. Understanding all the family relationships is probably highly impossible, but they were so nice to meet. I really enjoyed the games so much. Perhaps one of the best things we did was visit Marineland. Doing that with everyone helped get better acquainted with them. Probably Aunt Harriet would be a good facilitator with more practice.
Win: Our wonderful experiences with Ian, and the joy we were feeling daily as our family came closer together through facilitated communication made us want to reach out to see if it would work with others. When I discovered that indeed I could facilitate with others, I began to volunteer my services. This was exciting, not only because others were emerging from their isolated worlds, but also because the method was being validated over and over again. Ryan Jo, Jennifer, Brad, and Ricky are four children with whom I worked.
Ryan Jo is twelve and has gone to the same classes with Ian for years. Ian's speech teacher, Sue Leedy, had begun facilitating with her at the beginning of the year and had been having some success. She asked if I would try facilitating with Ryan Jo, so I came to school one day and tried it. This was the first autistic child I'd facilitated with besides Ian, and I was quite anxious to see how it would go.
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Sue: Is there anything you want to tell us?
Another time, Ryan Jo's mom, Laura, and stepmom, Theresa, were going to observe her facilitating for the first time, and I was asked to facilitate with her. Ryan: Quite ready to talk to mommy.
At this point, Laura realized why Ryan Jo wanted a new faucet. Her husband had installed some type of a new device on their kitchen faucet at home that Ryan Jo didn't like. It made it hard for her to use the faucet. After establishing that they would remove the device as soon as possible, we went on. Win: Anything else you want to tell your mom?
We proceeded to use what has become known as veteran facilitation, where an experienced facilitator puts a hand on the new facilitator's hand as the communication begins. The veteran facilitator then fades back until not lending any touch to the new facilitator. During the rest of the conversation, Ryan Jo told Theresa to tell her daughter not to change boyfriends, but to choose the one Ryan Jo liked, calling him by name. On another occasion, Ryan Jo and her mom came to visit at our home. Ian and Ryan Jo carried on an interesting conversation. We were especially intrigued by Ian's quick grasp of the concept of beginner's luck. Ian: Hi Ryan Jo.
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Then there was Jennifer. When I went to the first parent support group meeting I was able attend since learning how to facilitate, I was loaded down with materials to share with everyone about the whole wonderful process. But only three or four other parents came, and the building in which we were to meet was locked. So we retired to a nearby restaurant where we got a couple of booths in the far back corner. I shared, but nobody seemed to grasp the significance of what I was trying to explain.
However, one mother had brought her eight-year-old autistic daughter, Jennifer, because she hadn't found a baby sitter. I went out on a limb and offered to show her how to facilitate with Jennifer. When she agreed, I moved next to Jennifer, who was then trapped in the back of the booth. Her mom said she didn't like to have her hand touched. I thought to myself nervously, "What am I doing! What if she won't facilitate with me?"
I explained to Jennifer that I had an autistic son who had turned out to be really smart. I said I thought she was smart, too, and would like to show her how I had learned to talk with Ian. She was a hyperactive little girl with the typical behaviors of an autistic child, but as I talked to her, she became still and listened. I showed her our talking board and explained the process. She let me take her hand and answered a yes-no question by pointing to the "y" on the board. She then yanked her hand free. I retrieved it and asked her how old she was. She pointed to the number 8, which impressed her mother, and then yanked her hand away again.
I then turned and talked to her mom a while, explaining what I was doing. Suddenly, there was Jennifer's little hand waving in front of my face. I took it and asked her if she wanted to have her mom back, to which she typed an emphatic "y." So her mother and I changed places, and she took Jennifer's hand. Jennifer then typed "ou" and, after some coaxing, a "t." Finally we understood! She wanted to get out of that booth where she was trapped!
Since then, after a slow beginning, Jennifer has begun to facilitate well at home using a typewriter, and is also beginning to facilitate with her teachers at school.
On another occasion I met Brad, an autistic sixteen-year-old boy who moved to our school system sometime this year and attends a special education class at the high school. His speech teacher, not yet a veteran facilitator, had gotten some response from Brad, but wanted some verification that he was actually getting something from him. Sue Leedy and I went to see Brad one Wednesday morning in February at the high school.
The contrasts between Ian and Brad are multiple. While Ian is very big, Brad is very slight--perhaps a foot or more shorter than Ian. Ian is quick and often hyperactive, or at least highly energetic, while Brad is laid back in the extreme. Ian gobbles his food as fast as he can get it to his mouth, but Brad eats his baked beans one bean at a time. Ian is nearly completely non-verbal; Brad often uses "yes" or "no" appropriately and has many other words he says verbally.
Nevertheless, despite all of these contrasts, Brad reminded me very much of Ian as he proved to be highly functioning, fully able to read, and a speed reader with photographic memory capabilities. He also showed a sense of humor and a willingness to stretch the truth a little at times.
Brad visited Ian's class while we were in Florida and enjoyed it very much, easily able to do the work being covered that day. Later he came to visit again when Ian was there. The conversation between Ian and Brad was interesting.
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Brad: It's nice to meet you.
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Another boy we met was Ricky. Ricky's parents had our phone number and names and knew we were doing something with communicating with autistic children. But they didn't know exactly what. They had no other information, not even our address. Apparently the limited information they had about the good things happening in our family had somehow gotten around to their part of Indiana, about two hours away from us.
Ricky suffered a grand mal seizure when he was around two years old. Literally overnight he had lost his communication skills. He is not classified as being autistic. After conversing on the phone about what has happened with Ian and how it happened, his parents wanted to visit our home with Ricky to see if we could facilitate with him. If we could, at least they would know facilitated communication was worth pursuing in Ricky's case.
When they arrived, we saw in eleven-year-old Ricky a child who certainly acted like an autistic child. He was extremely active, with a short attention span and a potential to accidentally destroy things. He reminded me of Ian at one stage of his life when he would run across a room and crash into a window with both arms extended. We quickly learned to have a chair in front of each window in the house. Somehow Ian was never seriously cut, though the windows sometimes shattered. We could see that Ricky's parents probably had similar problems at home. We also noted that Ricky seemed to have the same bright, intelligent look in his eyes that Ian had always exhibited.
I could indeed facilitate with Ricky. While he didn't stop fidgeting while I was again giving my "we think you are smart" speech and explaining about how facilitation worked, he understood perfectly well. He answered yes-no questions and told me his mouth didn't work. In fact, he told me about his mouth not working twice. He said, "I do love mommy," and also that he liked Ian a lot. This was the first time Ian had seen another child begin facilitating, and he was grinning from ear to ear.
Ricky didn't say all those things at once, but got up several times and ran around investigating our house. But he kept coming back eventually to try again. He was exceptionally affectionate and kissed people several times. For the next week, Ian kept trying to kiss me, too. I finally said he didn't need to kiss me if he didn't want to, although I certainly didn't mind it at all. He was relieved and said he might not be meant to be a good kisser.
While on that visit, Ricky's dad tried to facilitate with him and got some good yes-no responses. My guess is that he will be facilitating well with Ricky some day.
Ian is always excited to see or hear about any progress in facilitating with other people. This is, of course, gratifying. Even now I can see clearly in my mind's eye a scene in a local nursing home. Ian is sitting at the big round oak table, grinning from ear to ear as he watches the home's residents learning to facilitate and communicate for the first time in their lives. We are thrilled about all these close encounters.
Yikes! This section is so exciting. Probably the so most exciting thing is that I know that I am not alone. Probably these kids felt just like I did when they first began to facilitate. Really, one thing everyone of us did was to listen when you told us we probably were smart. Only that perhaps would have caught our mind's attention. I remember when you said this to me. I was seen as smart for the first time. Probably I'll never any other moment like that have again! Both of the kids you said that to must have felt that way too. I most joyous to think some more kids this memory have.
Win: It is now April 2. I am remembering back to some of Ian's school experiences before entering a regular fifth grade class at the start of this school year. For several years, Ian has attended the severe and profoundly physically and mentally handicapped class in the public school system. Most of the kids in the class have been there each year that Ian has been there and longer, because Ian attended a moderately handicapped class for his first few years in the school system. A few of the kids were in that class with Ian as well, before moving to their current class.
To the casual observer, which for all practical purposes is what I was for most of those years, the kids in this class appear to be at an extremely low functioning mental level. Some of them are enthusiastically friendly, while some appear to ignore everyone around them. Some are so physically handicapped that they appear to be no more than a breathing body, with the breathing often so labored that the next breath seems in doubt. Some can talk, but what they say is usually tough to understand and often not appropriate to the situation into which they choose to cast their words. Some wave willingly when waved to; some not at all. Each appears to be an island unto himself. The only time the whole class does things together is when they are organized by the teacher and aides to do activities such as recess, library visits, music, or art specials.
Ian did his part in years past to contribute to this image. He ran about the room if unchecked, grabbing teachers' soda cans or any snacks left unprotected. Actually, he still does this. Most of his instruction was done one-on-one in a separate little room, and he certainly didn't exhibit any socialization skills with visitors to the classroom.
Did these kids have any interrelationships among themselves? I would have doubted it very much. The teachers and aides in the room probably felt differently about this question. One tiny little girl can control little of her body except her eyes and perhaps the way her head turns. She spends her time strapped into an upright position so that she can observe the world around her. The teacher tells us that this little girl always seems to get agitated when she is not seated so she can watch Ian when he is in the room. Her bright little eyes follow him where ever he goes in the room. They tell me that others in the room seem to show in little ways that another child in the classroom is special to them, too.
Now we know. As of today, all ten children in the class are facilitating. The totally non-verbal kids are, for the first time, communicating with words to the rest of the world. The verbal kids are displaying remarkable vocabulary and mental acuteness while typing on the board, a level of achievement they are simply unable to reach through verbal speech. One of the kids facilitates, "My mind is smart but my mouth is dumb." And they know each other well.
When Ryan Jo, the other autistic child in Ian's class, began facilitating, Ian gave her a lecture about being serious about facilitating at home so she could take work home and do fifth grade work like he was doing.
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Ian: (November 12): I no Ryan play game. Ryan need to talk Mom. Ryan Jo must communicate. |
Win:Another girl in the class is largely paralyzed and was thought to be severely mentally handicapped. When she began to facilitate and showed that she was intelligent, Ryan Jo gave her the same lecture that Ian had delivered to Ryan Jo. Ian insisted that the little girl mentioned above was smart too, if we would just try to facilitate with her. Another girl, one of the verbal students who took to facilitation with great success, similarly urged us to facilitate with yet another girl who is probably the most severely physically handicapped of all the kids in the room. Two of the boys in the class try to facilitate for each other. One of them is also an interested observer of Ian's facilitation and tried to facilitate with him.
Ian, Ryan Jo, and three of the others took the Iowa Skills test together this semester and freely encouraged each other. They were literally rejoicing with each other that they were finally showing the world they really were as smart as normal children. Incidently, not one of them tested at less than a fifth grade level, with scores ranging up to the seventh and eighth grade level, or, in Ian's case, as high as the eleventh and twelfth grade level. This was all the more remarkable in that the children had received little or no formal training in reading or mathematics up to then.
They are a family--a bunch of kids thrust together in one classroom because they fit nowhere else. They knew about facilitation when it came to be their turn to try it because they were close knit and able to watch Ian first and then Ryan Jo using it to talk. They were ready when their chance came, and they all in some fashion had the same messages to relay to the rest of us: "I'm not dumb!" and, "Tell my mom," or, "Tell my dad." Thank goodness for the caring teachers they have had over the years who didn't give up on them, showed them love, and treated them with respect. Thank God for facilitated communication and the many minds that this technique is going to release from imprisonment!
Children like us are all the way around the globe. We are like everyone else inside. For me, this is so sad to know that people don't understand and we couldn't tell anyone. Facilitated communication is going to change this. One day everyone will know that we perhaps are just like them. I hope so!
Win:As I look back, 1992 has been a year of wide media exposure for autism. We have seen specials and talk shows galore about autism and autistic people. These shows were about auditory training for the purpose of desensitization of the super acute hearing of some autistic children; about children who have "snapped out of" autism to live nearly normal lives; about possible environmental causes of autism; and about facilitated communication. We found two of the specials quite exciting.
ABC's PRIMETIME LIVE ran a segment by Dianne Sawyer about facilitated communication which presented it in a very positive manner. We saw kids who were among the first in the United States to facilitate and take their place with their age group peers in the classroom. We were thrilled to see kids who act like Ian doing the same things Ian is doing through facilitation.
ABC's 20/20 ran a segment about a small city in Massachusetts called Leominster. Until recently, Foster Grant sunglasses were manufactured there. Parents of autistic children in the region around Leominster recently began recognizing each other as childhood acquaintances from the same neighborhood of Leominster very near the old Foster Grant plant. One of the parents, Lori Altobelli, began accumulating information about these families and where the parents grew up. An inordinate number of cases were discovered, and when authorities in Massachusetts seemed unwilling to investigate, Lori somehow got the attention of 20/20, who ran their feature about it.
This program was of special interest to us as Lyn was born in Leominster, and her parents and her grandparents lived there most of their lives. Lyn's parents moved from there when Lyn was only six months old, however. As a result of the TV exposure, a scientist from Stanford University is including some of the families from Leominster in a chromosome mapping study that he was already doing with families with more than one autistic child.
We became involved in quite a bit of local media coverage ourselves this year. In October, the local Huntington newspaper did a marvelous two-plus-page feature about Ian and the changes that facilitated communication has brought to his life. The reporter and photographer nearly moved in with us for a few weeks while they researched the story. After seeing the write up, Ian commented, "Know that I too am really whale of a lot thankful that I now can talk."
Ian's school was braced for a big media follow up, thinking that perhaps other newspapers, television, or radio stations might pick up on the story. But nothing happened. In early January, the public relations person for Huntington College (where I work) put out a very brief news release telling about Ian and quoting from the earlier news article. In the release, mention was made that Ian's first question was about whether he would die from autism and that his second question was about driving the family car. For some reason, this small release highlighting those two questions caught the eye of several people in the area. In the past few months we have been contacted repeatedly about Ian. Two other newspapers have done large articles about him and his amazing progress. Todd's school newspaper did a feature on Ian and Todd and on how their relationship has changed. All three local network nightly newscasts visited us and did features about Ian on the local news. We were also interviewed by two radio stations.
It appears that a short, snappy news release reaps more fruit in media attention than a large, well written article. We found out that TV stations give scant warning before covering a story, even as little as forty minutes. A couple of times much frantic last minute picking up and vacuuming was required of us. We found that often one network is totally unaware of what another network has aired.
We also discovered that being on camera is not easy. Knees shake and one's command of the English language evaporates. I still find it mildly embarrassing to watch the tapes of those broadcasts and see myself grope for words while making silly faces. Only Ian seemed perfectly comfortable, but by the visit of the third news crew, he was getting upset because everyone kept asking him the same questions, such as, "What is your favorite book?."
The local ABC network affiliate ran a two-part segment because they got wind of Lyn's birth in Leominster. I can't figure out how they found out, except possibly because I told them. They were excited that someone locally was connected in some way with the 20/20 coverage of that story.
Ian has proven to be something of a ham. Though he might have been anxious before an interview, he was almost always calm and able to give good answers to the reporters interviewing him when the time came. Often the reporters would kind of rush in, doing just one more story in their busy day. When they left, they were bemused and moved from meeting Ian. I'm sure I sometimes detected a tear or two as they left.
Several pictures of Ian are in my mind as a result of all this attention. I chuckle to remember Ian lounging back on our couch and telling the third TV crew filming us in four months that this was a good shot of him.
Then there was the newspaper photographer running into our dining room from Ian's bedroom with Ian close on her heels, upset because she had taken a picture of him bouncing on his bed. Another time Ian commented on one of the pretty TV reporters, saying, "I'd like to hold her kid gloves!"
Besides the excitement of being in the public eye, we experienced another benefit from the media attention. People with autistic children and grandchildren began to call and write us, asking for information. We have sent many a packet of information concerning facilitated communication to families and to education professionals wanting to know more. We've also managed to meet many of the families and their children personally and to facilitate with their autistic kids. We've shared how our school system has helped Ian mainstream into a regular classroom this year and encouraged them in their efforts to have their schools investigate facilitated communication. These meetings with other families have been the best thing about our little media blitz.
Probably people do like to see how I can now communicate. Likely they are interested in the whole amazing story of this year. Possibly I might now be all done being on TV. Know that I lost control during my last TV interview when the nice lady asked me what my favorite book was. It was the same question that the last lady had posed on TV to me. Now I probably understand better that people don't all watch the same channel. I have enjoyed being on TV and in the newspaper. Hopefully lots of other kids and adults who haven't been able to communicate have heard about facilitation through my story. Every day I pray that this will be true. A good answer to my prayers has already begun.
As facilitated communication has introduced Ian's thoughts to us, we now know what is going on inside his head. But we still observe so many things in his day-to-day life that are also stamped, "This is Ian." For example:
Ian asking his mother for a hug when he wasn't feeling very well or hanging over the kitchen gate watching his mother prepare supper, driving her crazy;
Ian running his first one mile fun run, frowning and mostly walking at the start, but finishing on the run with a wide grin as the spectators cheered him home;
Ian trying to sit in church hoping a girl would sit next to him, then commenting, "She needs a friend, too," when the wrong girl sat next to him;
Ian losing his cool in a tense setting and wildly waving his arms around while everyone nearby ducks for cover;
Ian lounging on the couch watching a ball game, turning his face against the back of the couch because he can't bear to watch a particularly key moment in the game;
Ian sitting on his bed in the middle of the night holding his communication board on his lap, knowing I was coming because he had made some noise--waiting to tell me he had filled his diaper while he was asleep and afraid I would be mad at him;
Ian asleep, totally at peace.
Now I perhaps see better how you see me during my days living with our family. Some of them are serious and some are funny and some are sad. I have so many things in my life that need changing. I only know that I can't help some of them. Others can be changed so really much if I can little bit at a time work on them. Quite interesting reading these pictures of myself. You love me! Maybe I could do some of all of you in the family. Could be fun.