The delivery room experience wasn't one where the new child is put right into Dad's arms and Dad marvels at what he and Mom have wrought. Before I could even see my new son Ian, they rushed me out of the delivery room with no explanation, exhibiting very worried faces. I was upset and confused and I fussed at everyone I saw, demanding to know what was going on. As it happened, Ian was fine, but Mom needed many stitches to repair the damage she had suffered as she gave birth to our large new son.
I walked the floor with Ian when he cried in the night as a newborn, when it was my turn to lose a night's sleep. He was a pudgy little guy with black hair like his mother. He also had her beautiful brown eyes. He could scream with the best of them and I would become very frustrated, as the lack of sleep wore down my patience. Probably most parents of fussy newborns have been at the end of the same tether as I would be on those nights. Fortunately, there is nothing so lovable as a sleeping baby, at peace with the world. Seeing him finally asleep (after many false starts, some nights) in my arms and then in the crib made those hours of pacing worthwhile.
We were looking at some old family movies taken of Ian by his grandparents sometime during his second year and were once again taken with how adorable a toddler he was. I was reminded again of how he was Daddy's boy, right from the start of his life. When I would leave for work, he would plaster himself to the front door and weep his little heart out. He was always thrilled to see me come home and loved to sit on my lap. He would settle down better at night if I was the one to read him his bedtime story and give him his bottle. I would toss him into the air and catch him and would wrestle on the floor with him and would teach him new words. He loved these things so much.
Great Grampa McIntyre was the first to coin the term "four cylinder words" with respect to Ian's vocabulary. A gathering at Grampa Ray's house on the coast of Maine was in progress and Ian was identifying his favorite pictures in his Richard Scary Book, saying "helicopter" and "bulldozer" and "automobile". Great Grampa's terminology was very apt. Ian loved to watch any kind of machinery or vehicle in action. When construction people pushed dirt around on the empty lot next door, it made Ian's day. He would announce each piece of machinery as it would appear. When a train went by on the tracks behind our house, it was a major event. When friends came to visit, he would run around and around their car, saying "Wowee, what a nice car!". Back at our Maine gathering, loving the spotlight of admiring grandparents, he tried to say the alphabet for them, and got most of the letters in the right place, to the delight of everyone. Ian was almost two years old.
I sat at my older son Todd's kindergarten parents' meeting, where the teacher explains to families what their kids will be doing during the school year. She showed how they would learn their alphabet by personifying the letters. She introduced us to Mr. "M" and to other letter people. My chest was about bursting with pride, because I knew Todd could already read quite well and because Ian was nestled on my lap, identifying the letters even before their formal introductions from the teacher. Ian was less than a month from his second birthday.
Ian lay on the changing table, peering soberly up at me as I changed his diaper. "Point to the door hinge", I urged him. This was one of the times when we always worked on new words and identification skills. Both of my sons had always loved playing "point to" or "what is" games during diaper changing as toddlers. Today, Ian didn't seem to be in the mood to play. He was a few days past his second birthday.
Ian sat at the table in front of his cereal, not seeming to know what to do with the spoon in his hand. He needed to be fed or he wouldn't eat it. I was irritated with him, because I knew he could feed himself. It was hard to stay mad with him, though. He tried to do it himself, but just seemed to have lost his coordination. He eagerly ate each spoonful that I helped him with.
Almost a month to the day after Ian's second birthday, we were at a Halloween costume party. A teenager was dressed as Mickey Mouse. Ian got so excited! He would run near her and point and say "Mickey Mouse" in a delighted tone of voice, much like he used to greet the bulldozers working in the lot next door to our house. My wife Lyn and I looked at each other with relief in our eyes and hearts, for Ian hadn't been saying much around the house lately. He seemed to have been losing that edge off the excitement he always had while discovering the world around him.
I was wrestling with Ian, tickling him and rolling him around. He abruptly stopped his giggling and squirming and pointed to my knee and said "Daddy's knee!". I was astounded. It was many months past his second birthday and I was despairing that he would ever again point to something for me and tell me what it was. I had focused on body parts in my attempts to get him to start pointing again and then to just one body part, his knee. He usually just looked blankly at me when I asked him to even just point to his own knee. After he said "Daddy's knee", I tried to reinforce his successfully expressed insight by making a big fuss over what he had said. As usual, in response to my excited praise for one of his diminishing number of moments of achievement, he just withdrew into himself, not saying another word. I thought back to that pre two-year-old showing off so delightedly for his grandparents and I ached inside, for Ian and for our whole family.
We were walking from one part of Riley Hospital to another, Lyn, Ian and I. The only physical problem that doctors detected with Ian was fluid in his ears. We had been having a follow up hearing check done on him. As we went out one door and down the hallway, a normal little voice said, "I love you". As we casually looked around to see who said it, we realized that Ian was the only kid in the immediate area and that neither of us had said anything just then. To this day I can hardly believe I heard that phrase, but Lyn heard it too. For the last few months, Ian hadn't been talking at all, but it must have been him who said it. If so, it is the last verbal sentence he ever said.
Ian sat on the dining room floor near the wood stove, leafing through his old Richard Scary book. His facial expression seemed to say, "I know I used to like doing this, but I can't for the life of me remember why".
I sat rocking Ian on my lap before bedtime. Though he could no longer talk or do many self help things and though he now walked everywhere on his tiptoes and though he flapped his hands in front of his eyes for hours at a time, he was still a lover. He readily would curl up in my lap or give me a hug. He still loved to play tickling games and to wrestle around. This night on my lap, he did a strange thing. He made high pitched talking type noises, even though he wasn't actually forming words. After he did this a couple of times, I realized he was asking me to do something. Lyn suggested that maybe he wanted to hear the story of Goldilocks and the Three Bears, because the noises he was making sounded just like the tone I used when taking Goldilocks' part in telling the story. It had been one of his favorite stories, before. I had kind of stopped telling bedtime stories because he no longer seemed to pay much attention to them. So I tried it, and he seemed to be satisfied, as though his request had been complied with. By now, we were clinging to these rare moments of successful communication, less as signs of hope than as increasingly rare reminders of what our son Ian had once been. He was almost three years old.
We were visiting Gramma Wetherbee in Massachusetts. Gramma lay on her pullout couch in her living room downstairs while our family used her bedroom upstairs. Ian had begun to do compulsive, repetitive behaviors, some seemingly harmless, others quite disgusting or even dangerous. He was now in the midst of one of his worst, reaching down his throat and gagging himself. We had discovered that we could extinguish a repetitive behavior, if we monitored his every waking moment and slapped his little hand whenever he tried to repeat the behavior again. We also found out that a new behavior would soon come along to replace the extinguished one. We learned to take care in our interventions, because there was no guarantee that we weren't about to trade a simply odd behavior for a dangerous one. This night in Massachusetts, Lyn and I by turns sat by his crib until he finally fell asleep in the wee hours of the morning, slapping lightly his hand anytime he brought it near his mouth. Downstairs, Gramma listened. She finally realized and admitted to herself that something was seriously wrong with Ian and that he wasn't going to "just grow out of it".
I sat next to Ian as he ate his breakfast cereal. Using his spoon to eat his cereal was one of the first self help skills that Ian reacquired. Still, I had to help him get the last grains of cereal from the bowl. This day, before I could help him finish, he tipped his bowl toward himself by himself, capturing the last of his cereal in the milk now pooled in the bowl due to its tipping, and finished his cereal by himself. This is how I normally finish my own bowl of cereal. I realized that Ian had been observing my technique and had somehow successfully incorporated the same thing into his cereal eating. Since his "reincarnation" as the autistic Ian, this was the first new skill that Ian acquired by himself without months or years of repetitive, patient training from someone else. I was thrilled and Ian didn't seem to mind my praising him this time at all. Perhaps he knew he could repeat this skill again, whereas he couldn't seem to do things like say "daddy's knee" again. It must have been hard for him to get his Dad's most enthusiastic praise for things he could never again do.
Ian was playing in a fenced in area in our back yard, while I worked in the garden. I looked up after a few minutes and saw that the gate to the fenced in area was flat on the ground. Ian was gone! Our house faces on a very busy road and Ian has no fear of traffic. I was sure he was heading straight for the street and raced frantically to the front of the house. There was no sign of Ian there. I raced back behind the house and nearly ran full force into our neighbor. She said Ian was down in the back corner of her yard. She was an angel of mercy that day. I quickly retrieved him and brought him inside the house. Someone once asked Todd, Ian's brother, what his greatest fear was. He said that it was that Ian would get hit by a car or truck. I think that was our whole family's greatest fear. Our front door always remains firmly locked whenever Ian is in the house and his bedroom door is locked every night, lest he wander out of the house somehow while we are sleeping at night.
I rose from my seat and cheered lustily when Ian began swimming down his lane. We were at the Special Olympics swimming meet and it was Ian's event. We took Ian to swimming lessons not long after he was officially diagnosed as autistic. The instructor was very good at helping Ian find a swimming stroke that was natural to him. He became a very accomplished swimmer, especially when it came to staying afloat a long time. If we ever are all in a shipwreck, there is no doubt that Ian will be the last one afloat. Whenever motivated, he can also swim very fast, though no one is quite sure how he does it. He never appears to be kicking or using his arms much at all. One time he is not motivated is when he swims in a straight line in his own lane. He tends to meander along and even stop whenever the fancy strikes him. That day, he swam well for more than half of one span of the pool, but abruptly stopped and stood up to examine the lane marker. I groaned, but it turned out that his event only went a half of the pool length and that only one other boy was in the race. He won a gold medal! When it came time for him to get his award, he was supposed to climb up to the top step of the podium to get it. Oh no, I thought, he'll never do that. Much to my surprise, he coolly climbed to that lofty perch an let the judge put the ribbon with his medal around his neck, just like he knew exactly what he was doing all along.
We were at another of Todd's many ball games. I was Todd's coach and Lyn and Ian were once again spectators. Lyn wanted to go buy Ian, now a young teenager, a snack without taking him along while she bought it. A friend offered to watch him. The friend tried to hold his hand and take him for a walk, but he wouldn't let her hold his hand. Her daughter, a year or so younger than Ian, tried to take his hand and he willingly let her lead him by the hand where ever she wanted to go. Omigosh, I thought, he likes the girls.
After Facilitated Communication changed our world, many things happened, many of which are described in the pages to follow. I frequently have had to serve as Ian's voice. Dealing with Ian's dealings with girls has been among the hardest of my wonderful new tasks:
We were at the local chapter of the Autism Society of America's Christmas party. In a gymnasium, the autistic kids and their families were playing games, while Santa passed out bags of candy. A new family was there, with a newly diagnosed two year old autistic child. He was racing around, stealing peoples bags of candy, which would have been okay, except that he wasn't supposed to be eating any sugar. He had an older sister, just about Ian's age. She was just standing around, so Ian dragged me over by her and told me to ask her where she went to school. Quite a long conversation followed, in which I was Ian's voice. At first the girl kind of looked at Ian like he was just one of all these weird kids, including her brother, doing odd things around us in the gym. She soon got caught up in the conversation, however, and they had a pretty normal "getting to know you" chat. Her mother later told me that her daughter was impressed by Ian and wondered how many times he had the chance to talk to other kids like that. It was Ian's first chance to meet and flirt a bit with a girl of his own age and he was thrilled to death. He talked about that experience for days afterwards. Back visiting in Maine, we were at a party given by Ian's Gramma Jean. At the party was a distant cousin about Ian's age that he remembered from previous visits. He liked her and thought she was cute. She came and sat on a chair nearby and Ian tried to open a conversation. He facilitated through me to her a silly question, the kind of thing teenage boys typically ask when they want to start a conversation and impress a girl. I winced inside, because it brought to mind some of the painful foopaws that I had made as an adolescent, but being his voice, I faithfully asked her the question on his behalf. Soon she had moved on to other places in the house and Ian spelled out to me, "I really blew that one, didn't I?". I remember thinking the same thing many times about myself in high school and college and thought to myself, "am I ready to relive those painful teen boy/girl relationships again?". I know that when Ian hurts inside, I do too and that I wasn't going to have any problem remembering how fragile the adolescent ego is when it comes to dealing with the opposite sex. When Ian starts asking girls for dates and going on dates, I fear that I will still be his voice. Unless, that is, that we can get some of his peers successfully facilitating with him who are responsible enough to be aware of the ways they have to watch out for his safety, as well as being his voice. I love being able to communicate with Ian and being in on his life so completely, but this is on area where Dad may not be the best person for the job. Of course, I will gladly do my best, if another alternative doesn't present itself. |
It's bedtime and Ian is about to hit the sack. "Anything else you want to say", I asked. As he so often does, he spelled out "I love you. Good night."