Win: Ian was a normal child until about his second birthday. He had a vocabulary of one hundred fifty to two hundred words, many of which were multiple syllabic. He was just saying his ABC's and loved to read Richard Scarry books--just like most children his age.
Suddenly over a period of six months, he lost all of his verbal skills and seemed to lose any interest in books or reading. For the next twelve years, these verbal skills remained completely absent from Ian's life.
Lyn: Ian was a sweet, shy baby with big brown eyes and dark curly hair. He has always been big (not fat) from his birth weight of 9 lbs. 6 1/2 ozs. up through toddlerhood and childhood when he was off the high end of the growth charts, until now, his teenage years, when he stands well over six feet and weighs 180 lbs. He has always been very attractive and appealing physically. In this way he is like many other autistic children, for their beauty and attractiveness has often been remarked upon as being a frequent characteristic of the disorder. His brother, Todd, was 3 and 1/2 when Ian was born. In many ways he was a lot like Todd had been when he was a baby, although not in appearance, as Todd was a fair baby with red hair and blue eyes. (Not long ago, Todd and Ian were riding in the back seat of our van, evidently looking each other over, when Todd said, "We really don't look anything alike, do we?" and Ian added his agreement!) Ian was "normal" as a baby, and all those developmental milestones were accomplished at the proper times--cooing, babbling, sitting up, crawling, walking, etc. When Ian was around a year old he began saying words like mama, dada, night-night, bye-bye, etc. At twenty two months, he was saying quite a few words and especially liked to say what his great grandpa called "four cylinder" words, such as firetrucks, helicopter, bulldozer, and motorcycle. He also spoke several phrases common to that age, such as "go to bed", "read the book", "time to eat" and he often imitated things Todd would say. Todd was in kindergarten and learning letters like "Mr. M and his Munching Mouth--he likes Meat, Macaroni...". He would tell us about the letters he was learning and Ian would repeat what he was saying. During those "normal" months prior to his second birthday, Ian played with things like blocks, toy farm animals, and toy cars and trucks, often with his brother. He loved to look at picture books and would bring them to us to read to him. He especially liked Richard Scarry's alphabet book. It was a large book with many silly pictures illustrating each letter of the alphabet with words under each picture. (I've heard some parents say they think Richard Scarry books are too detailed and too "busy", but both of my kids loved them, and the well worn condition of those books shows the many years of enjoyment they provided.) Ian loved to be held and rocked and read to, especially before bed, and preferably by his father. He was always a "Daddy's boy", even when he was a baby. He was shy and sensitive with people he didn't know and didn't like being left in the church nursery or with a baby sitter, although he tolerated it pretty well if Todd was there. He didn't seem interested in playing with any other kids. He had a tendency to be timid and fearful in new situations and with new people, although he certainly wasn't bothered by big noisy machinery. A railroad passes behind our house, and Ian would run to the window and watch with delight when a freight train roared by with its whistle blowing. He also watched the activity in a field next to our house involving dump trucks, bull dozers and other heavy equipment, with great interest. We sometimes called Ian our "nature baby" because he loved to play outside with grass, sticks, leaves and dirt. While we were visiting my parents in Maine during the summer before Ian's second birthday, my father took some home movies of Ian on the beach, running in and out of the water with Todd, flinging sand everywhere, picking snails off the rocks and throwing them into tide pools. He was in his element, happy and laughing and looking just like any other child at twenty two months. Those movies are precious to us now, because not long after that, Ian began to change. The changes were gradual. Sometimes it seemed to me that Ian's slow regression was more of a sick feeling in the pit of my stomach than an actual reality. I wanted to believe that the changes were a figment of my imagination and that I was being a nervous mother. But as time passed it became more and more apparent that something was very wrong with Ian. Instead of chattering more and more and learning new words every day like most two year olds, Ian was talking less and less. He would sit or stand by the window and hold his fingers up to his eyes. He began making peculiar, repetitive motions with his body. He made less eye contact and he often seemed dreamy and remote. The sick feeling in my stomach turned to fear and dread as I watched my beautiful, perfect little boy slipping away from me. I wanted to reach inside of him and stop the awful thing that was happening, but I was unable to help him. Living with that--knowing that something is terribly wrong with your child and being powerless to help him must surely be one of the most heartbreaking experiences for a parent to go through. I am so thankful for my faith in the sovereignty of God. I went through a variety of emotions, and I questioned why this was happening to our son and to us, but I was able to cling to my trust in God's purpose and plan for all of our lives, including Ian's. Ian was diagnosed with autism at Riley Hospital in Indianapolis in November of 1980 when he was three years old. We were devastated, especially by the poor prognosis--that two thirds of all autistic citizens require care either in the home or an institution for the rest of their lives. And of the remaining third, only a small percentage are actually able to be independent. This was our child's whole life being laid out before him and he was only three years old! Not long after we heard this depressing statistic, a dear Christian friend said to me that the experts can say whatever they want, only God knows the plan for Ian's life. I had found myself getting all bogged down in depressing facts and figures, and her words gave me a sudden and wonderful realization that God is in control. Something I already knew, but had managed to forget in the overwhelming days following Ian's diagnosis. I have brought her words to mind many times over the years--they help me to remember that Ian's life is in God's sovereign hands. |
Win: Since that time, Ian has attended a preschool program for two-plus years, special education classes in the public schools for eight years, and several years of a summer school program begun by parents of handicapped children called the Summer Enrichment Program. He has regularly seen professional speech therapists throughout that time, both in and out of school. Until this past spring, the most difficult tasks he seemed to be able to accomplish were some matching and pointing skills that didn't carry over to a communication board and which tended to fade after time.
He did learn some simple workshop skills, but only would do them under close one-to-one supervision. He had repeatedly tested at a six-month to two-year-old achievement level on the typical tests administered to handicapped or developmentally delayed children.
Within the last two years, one very competent speech therapist suggested to us that perhaps the time had arrived to stop the therapy because all of Ian's needs were being met in his home environment and he seemed to have little motivation to participate in any kind of communication system. In all fairness to her, Ian never picked up too well on signing or pointing to pictures to communicate wants or needs other than eating or drinking.
However, his most recent therapist, Sue Leedy, decided to give communication boards one last try. Showing amazing astuteness, she noticed that he often pointed to the words under the pictures rather than to the pictures themselves. As that school year ended (June, 1991), she was illustrating that Ian could identify many words and link complete sentences with the pictures they described. She had to combat our skepticism to convince us that Ian could really read these sentences. He improved on his test results to over a four-year-old level of achievement.
As July rolled around, we were attempting to establish a communication system for Ian involving words rather than sentences, and he seemed to be doing better than ever before. In some respects, this went right along with what we'd thought about Ian for a long time. We had always balked at the concept that Ian was mentally retarded, perhaps because of his early normal behavior. We had wanted to believe that his eyes reflected intelligence, though he couldn't seem to express what was in his mind. Many other people had expressed the same thought, saying things like, "I almost expected him to start talking," or, "I'd sure like to unlock whatever is in Ian's mind."
To be perfectly truthful, however, as of early July, 1991, we pretty much felt that Ian was a little boy trapped in the six-foot, one hundred sixty-five pound muscular body of a growing thirteen-year-old.
Me not retarded. Me not remember when I was normal. My still autistic mind is perhaps not normal but it is not retarded either. I really can perhaps make a sometimes many landed ways to show that I am smart. Writing like this shows that I am smart.
Win: Everything changed from the moment we attended the July, 1991 national meeting of the Autism Society of America and learned about facilitated communication. We were taught to use a sheet of paper on which appeared the alphabet in capital letters, the ten digits from 0 to 9, and the words "yes," "no," "stop," "more," and "I don't know." The common punctuation marks also were on this sheet.
We were shown how to hold Ian's hand, wrist, or sometimes elbow, allowing him to spell out what he might want to say. The person holding his wrist is referred to as the facilitator and must help lift up his hand between letters so he can view the entire board and find the next letter that he wants to type. The same can be accomplished using a computer keyboard. However, the simple sheet of paper is much more versatile in that it can be carried easily wherever one goes.
This is essentially all there is to the method! As simple as it is, take away the supporting hand and Ian can't spell anything. We couldn't help wondering with amazement how something so simple could accomplish so much! We rejoice greatly in the changes this communication method has brought about in the life of our family, but we wonder how all of us who have lived and dealt with autistic children have missed it until now.
Me can't talk without your touch. Me still will talk to God.
Win: As soon as we returned home to Huntington, I began working with Ian as I'd been taught at the autism conference. I sat Ian down in front of our letter board that was taped to an atlas and propped up at a thirty degree angle. I explained that I was going to ask him some questions that were very simple and that he shouldn't be offended by them. I told him I needed to practice this "talking" with him and find out just how much he did know. He responded immediately and spelled out answers to my questions!
Most of what we asked him was factual in nature. He knew most answers, such as his name (though he didn't know how to spell Wetherbee), how old he was, the names of his teachers and classmates, and the names of relatives and friends who might be in the house with us when we were talking. He was very willing to tell us what he wanted for a snack, and that he did want a snack. He could immediately count and do two-digit addition and subtraction. His spelling was either very good, including silent gh's and other strange non-phonetic English spellings, or it was way off. But once we showed him a correct spelling, he didn't forget it.
Ian (March 6, 1993): The day that my dad first tried F/C [facilitated communication] with me, the things he asked me were very simple and easy, but I nearly made dumb mistakes because I could hardly think clearly about anything in my excitement about having a chance to communicate. When he asked me to spell my name, I misspelled my last name, even though I knew the right spelling. He still thinks that I didn't know how to spell it--at least he did until now. I also missed other quite simple answers. Fortunately, Dad and Mom kept at trying it even when I got too excited and had to leave the table where we were sitting. |
Ian (December 12, 1991): I am autistic and have only learned how to communicate since July [1991]. I could already read but nobody knew this. I am not able to talk with my mouth, but am able to fully communicate using something called facilitated communication. This lets me type my words. Before, people thought that I was retarded. Thanks to facilitated communication, they now know that I am intelligent. 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. I thank God for a few good people who showed my dad how to do facilitated communication with me. Really now I am having trouble writing this because inside I am reminded about people thinking I am dumb and never just seeing good mind because of my so autistic actions. |
Win: We used to have three cats, but two of them died in the past year, one of old age and one of sickness. When I explained this to Ian as we were asking him the names of our pets, he twice typed "me die" in the middle of other things we were doing. Still being at the early stages of this process, I wasn't thinking of Ian as someone who worries about dying, so I missed the significance of what he was saying, even attributing the words to poor facilitation on my part. But as I lay in bed that night, I began to wonder if I had missed something important.
The next day, I explained how to ask a question by using the question mark and asked Ian if he had any questions. His first question was "I die not?". When I asked him why he was worried about dying, he answered, "because I have autism". These were the first sentences he tried to type and he misspelled autism, but he certainly revealed a depth of thought that we had not conceived as possible with Ian. His next question was, "might I drive the car?", showing that he is a typical teenager.
My mind is going bananas with love for you and mommy because you really love me.
Ian (March 6, 1993): When my dad showed me how to use the question mark to ask questions, I wanted to ask about autism and would I die from it. Why I wondered about it was because two of our cats had died very recently and I was reminded that I didn't understand about how my autism works. Did it just make me look dumb to the rest of the world, or did it also make my life shorter? When I asked if I would die from my autism, I was so worried about the answer that I forgot how to spell autism. Dad again thinks that I didn't know how to spell autism at first. If I knew how to spell any word, it was autism. That word had ruined my life, or so it often seemed. Well, not really ruined it. I loved living even with my autism. |
Win: Since Ian has attended church and Sunday school all of his life, one of the first things I did was ask him about God. He knew Jesus is God's son and that he lives in Heaven, that Jesus died on the cross, and that he had to die because of sin. I didn't pursue things further at that point, as I wasn't sure how much those answers meant to him.
Some time later, we were having a discussion with him about crossing the street. Just like in a home with teenagers, there was a difference of opinion between Ian and us. He feels he is too old to have his hand held as he crosses, and we feel he doesn't have the proper respect for the dangers involved.
We mentioned to him that he once ran across a very busy road when he was a child and that God must have been watching over him since no car was coming then. This led to a religious discussion that showed Ian understood a lot and had some very intelligent questions to ask about what he didn't understand. He wanted to know if Jesus had sinned and why he died if he didn't sin.
As we shared about Jesus' death being in our stead so that our sins could be forgiven, things seemed to become clear to him. Soon Ian prayed, "Dear Jesus, I sorry that me sinned. I believe that you died on the cross. I love you Jesus. Come into my heart. Amen."
He now prays nightly, sometimes by spelling his prayers through facilitation and sometimes in his own head. Some of his requests to God are very practical and short term in nature, and some are long term requests. One of his requests is to be able to talk with his mouth. His prayers are beautiful, at least to my eyes.
Lyn (October 27, 1991): Less that two months after we began facilitated communication with Ian, he shared some things with me one Sunday that showed he had a deep faith in God. Ian facilitated, "Probably, perhaps I might know God good things for me has planned. . . .Maybe I won't talk with my mouth but maybe he will know what's best for me." |
Win: It wasn't long before Ian insisted on going to the bookstore and getting a Bible like his brother's. He also very much wanted to go to Sunday school with his own age group at our church, and that soon was made possible.
Since then he's always telling people how he loves Jesus. He reads his Bible every night. He gives his testimony at church whenever he gets a chance. He spells it out to me and then types "tell them." And if I don't get it right, he pounds me on the head!
I love Jesus and believe that He is the son of God. I seeing God in nature and in the justice of Jesus' death on the cross.
Ian (June 24, 1992): Perhaps I could mention some things about what it is like to be autistic. We are smart but no one knows just how smart we are. People treat us like we are little kids who can't understand good. We understand a lot and get very frustrated when we are asked to do easy things. On "20-20" one little boy was asked to draw a circle and he was crying. I said to my dad that it was too easy for him and he had no way to say really that to his dad. I know this because I was really that way for twelve years. |
Win: Ian's way of showing anger and frustration has always been to bite his hand. He used to bite his left hand and had built up quite a callous on the back of that hand. But several years ago he switched to biting his right hand, and it now bears the callouses so common to autistic children everywhere. We had attributed his hand biting and occasional fits of screaming to one of three reasons??hunger, tiredness, or bathroom problems. Now that we can ask Ian what is wrong, I don't think those three reasons have once entered into the picture, although tiredness can be an underlying reason for anyone's temperament problems.
The first time I asked Ian why he was biting his hand was after a day in summer school. When I picked him up at school, he bit his hand, so I told him that I would ask him what was wrong when we got home and I could facilitate with him. He immediately stopped biting his hand and even smiled.
When we got home, he spelled out "bad girl" as the reason for the biting, although he wouldn't say anything more about what was wrong. When we asked his teacher about it the next day, she was amazed. They had just gotten a new girl in the classroom who was a real terror and who had disrupted things the whole day. She was surprised it bothered Ian so much. The incident helped change her perceptions of him, just as ours had changed dramatically after we'd started facilitation. For example, during nap time, she let Ian sit at the table with the adult helpers, and they began trying to talk with him daily.
Other reasons for Ian's hand-biting since then have been because I was singing along with the car radio (I am a notoriously bad singer); because one family member was yelling at another family member; boredom; because I was doing something else and didn't know he wanted to read more of his book; and because he was tired of watching the movie we were watching. "I don't know," he facilitated simply another time.
As I write this, it has been about a month and a few days since we began this communicating and these are the only times I can recall him biting his hand over that time. I'm sure there were other times as well, but this represents a large decrease in hand-biting episodes over such a time period.
I still get mad sometimes doing really silly things while I am mad. I might not bite my hand so much though. When I am mad now I can tell you about it. Sometimes I still bite my hand because I am trying to tell you that I good and mad.
Win: It didn't take us too long to realize that Ian is a speed reader, reading an entire page of material in seconds. He apparently has a photographic memory. For instance, after a single reading of Psalm 23, Ian could quote it two days later. He hasn't shown great stamina for reading at any one sitting, but just yesterday read his first childrens' book called THE PIRATE OAK TREE MYSTERY, which was one hundred fourteen pages long. Progress is being made.
So far, he needs someone to sit with him and turn the pages when he is ready. He reads the pages at a glance, but then sometimes sits for a long time between pages and contemplates their contents.
I might be smart but I still am autistic. This is frustrating. My rosiest hope is that I might beat it someday. A lot of my frustration is not because Christ made me autistic but because of where I see myself getting so far more very way behind other kids.
Lyn: It was October 1, a Thursday, when Ian was at school facilitating with his Dad that he turned a page back and pointed to a picture of the Hancock Building in Boston. He said, "I seeing this building before." That, in itself, was wonderful--the fact that they were having a conversation together about an article in the reading book. But the most amazing thing was that Ian turned the page back on his own! "I can turn the page myself," he facilitated. And then he practiced turning pages for the next five minutes! |
Win: Ian is good in math and can do simple arithmetic in his head. This fact obviously pleases him, for on October 14 he facilitated, "Me smart in math!" Earlier, on October 8, he had complained to his special education teacher that his addition and subtraction papers were "not hard enough." When she responded, encouraging him that he was doing great, he answered, "Me a ham."
And his progress continued at an amazing pace. Only a few weeks later as he took his Iowa test in math computation, he answered the questions so fast that Sandy Webb, his facilitator, said she didn't have time to figure them out herself before Ian already had finished!
| Sandy (October 23): Do you understand "self esteem?"
Ian: y [for yes] Sandy: What is self esteem? Ian: See good things about me. Sandy: What do you like about Ian? Ian: I am smart. See myself enjoy deep thinking. |
Ian likes to play "20 Questions" also, although so far he always wants to be the one thinking of things for others to guess. He loved playing in a t?ball league for handicapped children this summer. He seems quite competitive sometimes, which surprises us since we had no idea he had any concept at all about what games are all about. He says he likes to watch basketball on TV. Basically, we have just scratched the surface in finding out about what Ian can do and who he is.
I believe that I might be a mighty whale of a halfback and perhaps forward in basketball if I was not autistic. Know that I like sports very much and that vying still is something that I enjoy very much. Really I like to play games too but vying in games was too hard for me. Wanting to play and playing are different things! Really someday new games I wish to play. My most true wish is to learn to play perhaps good basketball. Finally, I would like to also play church softball at shortstop knowing you were at third base.
Win: We asked Ian how he learned to read and do arithmetic. He said he learned reading by watching TV and math by observing another "higher functioning" autistic child in his class when she was being taught math.
My reading began from going to school. I then watched TV to learn more about reading.
| Ian (September 23): Me think about school tomorrow.
Lyn: Are you excited? Ian: Yes. Lyn: What did you do today? Ian: We read stories about some woman named Rachel Willower. Lyn: Is she a grown up or a young girl? Ian: Young. About my age. Lyn: Did you like the story? Ian: Too silly to be true. . . . Me learning to read longer without stopping. Would we have some supper soon? |