Ho, ho, ho! Ho, ho, ho! These little syllables blurted out in quick succession can make anyone seem a little...well...nutty. Justifiably so. Christmas is one of those times of year that, for all the joy and excitement of the season, nevertheless always seems inescapably emotional, intense, and stressful.
A few days before school ended for the holiday, I was over at the school as the first graders were returning from a rehearsal for their Christmas program. Ben's teacher stopped in the hall to chat with me for a moment as the kids headed outside for some much-needed fresh air. I asked her, "So, how is it going?" She replied, "Well, it's definitely Christmas."
She went on to explain that Ben was having a hard time dealing with the changes in his class schedule, and with the heightened energy that electrified the school as hundreds of children anxiously anticipated school vacation and holiday gifting. It seems he wasn't able to get up from his desk for any reason without feeling compelled to rush over to any random nearby classmate and issue a push, or a hit, or some other intrusive form of touching. I wasn't sure if he'd make it to the last day of school or not, but he seems to have gotten through (much to the credit of a very patient, caring teacher).
Yet out of chaos, Ben managed to create order. As he came home from school on the last day before Christmas break, he produced from his backpack two pages of very intricate pin-hole art. I can't imagine how many hours he had spent at school carefully poking hundreds or maybe thousands (I am not exaggerating--I would not have had the attention span required to accomplish this project) of evenly spaced holes into his construction paper with a push pin, following complex patterns to create images of candles, holly, and candy canes. I could sense from his short demonstration of the process that the project had soothed him, offering him a chance to focus his mind on a single, simple task while simultaneously shutting out external stimuli. Once home, he located more construction paper and spent a few more hours sprawled out on our living room carpet punching patterns into the colored paper with a small push pin. I suppose it's the same rhythm and motion that calms him when he works puzzles or creates mosaic art with small foam shapes--both good "go to" activities when he's uncontrollably upset.
I was humorously reminded of Ben's need for order when he discovered one evening that I had wrapped a gift for myself and placed it under the tree--a clear violation of the gift-giving custom. He read the package: "To mom...from...mom?" Then he called out to me: "Mom! Why does this present say 'to mom, from mom'?" I explained that I had given myself a present. "You gave a present to you?" he repeated. He thought about this for a moment, puzzlement lining his scrunched up face, and finally said, "Oh. Well...do you know what it is?"
Ben loves Christmas. He is delighted when we extricate the tree and decorations from the attic and set them up throughout the house every season. He looks forward to "Christmas milk" (his title for egg nog) all year long, and drinks gallons of it by himself as long as we bring it home. And yet, I think that in some ways, like all of us, Ben likes to put Christmas away when the season has ended. He won't admit that he does (quite the opposite, actually), but I sense the calm that comes over him when our home is restored to its original decor, and when the routines of school and family are reintroduced. Out of chaos comes order; out of Christmas comes a new year. I wonder what this one will bring...
Monday, January 4, 2010
Sunday, November 22, 2009
Change is Good...Right?
The Greek philosopher Heraclitus proposed over two millenia ago that the only enduring thing in the universe is change. His theory has been reiterated thousands of times throughout the ages by Plato, Emerson, Tolstoy, Gandhi--even Bob Dylan crooned that "the times, they are a-changin'." And we as human beings do our best to embrace change a-la the adage, "Change is Good."
For Ben, however, change is not good. This was made clear to me about a week ago, when he lost his first tooth.
I knew the tooth had been loose--he showed it to me several days before and asked about nine dozen questions related to the process of tooth loss, tooth growth, and the whereabouts and lifestyle of the tooth fairy. I thought we had covered all necessary preparatory ground.
Still, one morning at breakfast last week, I looked over and saw Ben sitting still as a statue at the breakfast table, staring blankly ahead, "No Vacancy" emblazoned across his face. I was a bit startled. "Ben, what's wrong?" No response. "Ben, are you OK? What's wrong?"
His facial expression never changed, only tears began to roll down his cheeks. I hurried to take him in my arms as he unexpectedly sobbed, "My toof is yoose and it's going to fall out of my mouf and I don't want my toof to come out of my mouf!"
I assured him that everything would be OK, and inspected the "yoose toof" to discover that it was hanging by just a thread. I encouraged Ben to just jerk it out, but he refused--he wanted it to stay right where it was. So, I sent him to school, figuring that nature would take care of the extraction.
That afternoon I went to the school to pick up a cookie dough order, and figured I'd get the boys from school at the same time. When Ben reported to the office, the tooth was even less attached to his jaw than it was before school started, yet still it clung to his gums by the thinnest of filaments, and still Ben refused to pluck it out. Nor would he let me finish off the task. However, when a brave and compassionate school secretary offered to help, Ben was happy to stand in front of her, expose the dangling denticle, and not so much as blink as she counted, 1-2-3! And then plink! The tooth was out. We cheered, we applauded. Ben stood stoically, ne'er so much as a smile, just waiting for the tooth to be placed in a plastic bag, and that was that.
Change has a way of springing up around this time of year, though. For instance, Ben's Primary (his children's class at church) teacher mentioned a few weeks ago that at the beginning of the year, Ben really struggled in Primary. But now, he seems to have settled into the routine--the sameness--of it all. Tragically, the routine is about to change. Come January, Ben will be moved to a new class, a new teacher, a new meeting schedule...so buckle up: blasting zone ahead. Be prepared for the earth to shake for a while. Ben's behavior will deteriorate until he feels comfortable with the new routine. I'm not speculating: this is a time-proven fact.
I'm also noticing that his behavior at school has become more erratic of late: some good days, more bad days. Some good behaviors, more problems with pushing classmates, crawling under desks for large amounts of time, and avoiding class- and homework. Everything is in flux at this time of year: the weather is changing, the time zone is changing, and the daily schedules are changing as classes prepare for Thanksgiving feasts and Christmas programs. Even our home is changing as we begin to rearrange furniture in anticipation of a Christmas tree and holiday decorations. The very atmosphere of life is changing as we move into and through the festivities of winter.
For most of us, these changes make sense and we adapt quite quickly. For Ben, they represent chaos and confusion. Remember the title character in the old 1980's movie "Rain Man"? That character had to watch the same t.v. show every night, and purchase his underwear at the same K-Mart, in order to keep his world together. Ben's not so extreme--he won't bang his head and scream if we pick up some Underoos at Walmart--but routine is still critically important to him. When it changes, so does his behavior. And not in a good way.
So for us, change might be good. But for Ben, change is overwhelming. Unfortunately, Heraclitus had it right: change, for good or bad, is the only thing we can ultimately count on. How do I teach Ben that change IS routine? The irony will certainly be lost on him...it is on me, too.
For Ben, however, change is not good. This was made clear to me about a week ago, when he lost his first tooth.
I knew the tooth had been loose--he showed it to me several days before and asked about nine dozen questions related to the process of tooth loss, tooth growth, and the whereabouts and lifestyle of the tooth fairy. I thought we had covered all necessary preparatory ground.
Still, one morning at breakfast last week, I looked over and saw Ben sitting still as a statue at the breakfast table, staring blankly ahead, "No Vacancy" emblazoned across his face. I was a bit startled. "Ben, what's wrong?" No response. "Ben, are you OK? What's wrong?"
His facial expression never changed, only tears began to roll down his cheeks. I hurried to take him in my arms as he unexpectedly sobbed, "My toof is yoose and it's going to fall out of my mouf and I don't want my toof to come out of my mouf!"
I assured him that everything would be OK, and inspected the "yoose toof" to discover that it was hanging by just a thread. I encouraged Ben to just jerk it out, but he refused--he wanted it to stay right where it was. So, I sent him to school, figuring that nature would take care of the extraction.
That afternoon I went to the school to pick up a cookie dough order, and figured I'd get the boys from school at the same time. When Ben reported to the office, the tooth was even less attached to his jaw than it was before school started, yet still it clung to his gums by the thinnest of filaments, and still Ben refused to pluck it out. Nor would he let me finish off the task. However, when a brave and compassionate school secretary offered to help, Ben was happy to stand in front of her, expose the dangling denticle, and not so much as blink as she counted, 1-2-3! And then plink! The tooth was out. We cheered, we applauded. Ben stood stoically, ne'er so much as a smile, just waiting for the tooth to be placed in a plastic bag, and that was that.
Change has a way of springing up around this time of year, though. For instance, Ben's Primary (his children's class at church) teacher mentioned a few weeks ago that at the beginning of the year, Ben really struggled in Primary. But now, he seems to have settled into the routine--the sameness--of it all. Tragically, the routine is about to change. Come January, Ben will be moved to a new class, a new teacher, a new meeting schedule...so buckle up: blasting zone ahead. Be prepared for the earth to shake for a while. Ben's behavior will deteriorate until he feels comfortable with the new routine. I'm not speculating: this is a time-proven fact.
I'm also noticing that his behavior at school has become more erratic of late: some good days, more bad days. Some good behaviors, more problems with pushing classmates, crawling under desks for large amounts of time, and avoiding class- and homework. Everything is in flux at this time of year: the weather is changing, the time zone is changing, and the daily schedules are changing as classes prepare for Thanksgiving feasts and Christmas programs. Even our home is changing as we begin to rearrange furniture in anticipation of a Christmas tree and holiday decorations. The very atmosphere of life is changing as we move into and through the festivities of winter.
For most of us, these changes make sense and we adapt quite quickly. For Ben, they represent chaos and confusion. Remember the title character in the old 1980's movie "Rain Man"? That character had to watch the same t.v. show every night, and purchase his underwear at the same K-Mart, in order to keep his world together. Ben's not so extreme--he won't bang his head and scream if we pick up some Underoos at Walmart--but routine is still critically important to him. When it changes, so does his behavior. And not in a good way.
So for us, change might be good. But for Ben, change is overwhelming. Unfortunately, Heraclitus had it right: change, for good or bad, is the only thing we can ultimately count on. How do I teach Ben that change IS routine? The irony will certainly be lost on him...it is on me, too.
Friday, October 30, 2009
You're Breaking Up
A few days ago during one of Ben's not-so-good days, I became quite frustrated with him. I lectured him for several minutes and then, noticing that he wasn't hearing a word I said, I asked, "Ben! Do you understand what I'm saying to you?" He looked up at me and replied, "Actually, no. You're breaking up. Sorry."
I laughed at first, but then realized that he might have been accurately describing his experience. James Ball, author of "Early Intervention & Autism," stresses that autistic children struggle to process verbal information--particularly in chaotic situations. I'd say that between my raised voice, the blaring television in the next room, and his siblings' nearby hooting (apparently I've given birth to a parliament of owls), Ben wasn't able to process much at all of my tirade. It may truly have sounded to him like I was breaking up, as the synapses in his brain fired on and off in an effort to process all the sounds around him.
Ball's comments also help explain Ben's urgent need to find signs and symbols that represent verbal words. For example, last summer Ben and I were attending one of Joey's (my 9-year-old) baseball games. I was so pleased to look over at one point and discover that Ben was standing among a few other children who were about his age, rather than wandering around by himself. Suddenly, though, he reappeared back at my side and said, "Mom, how do I say 'I don't know' in sign language?" I told him that I wasn't sure. He responded, "Oh. Maybe it's like this," and then he made a series of enigmatic hand motions, pointing to his head, then waving his fingers away from his body. Satisfied that he had figured it out, he ran off again toward his new friends and immediately repeated his signals as if everyone might take his meaning. He didn't seem to notice the blank look on the children's faces as they watched him and then turned back to their own games.
One evening several months ago, I instructed Ben to go upstairs and get his pajamas on. He turned to me, blew directly into my face, and then explained, "If I blow on you, it means yes." And then he trotted upstairs to change his clothes. For several days after that, he regularly blew in my and others' faces as a way to express his opinion--sometimes positively, and sometimes not.
It's hard to have a conversation with Ben, partly because he loses interest a few sentences into the effort, but also because if Ben's train of thought gets derailed midway through a sentence, he can't just pick up where he left off. He has to go back to the beginning of the sentence and start over again. Often Ben will begin a sentence four or five times before he can get all the way through it--and he and his listeners get frustrated after too much of that. Tonight, Ben was trying to tell me about something he learned in school. He started talking, but then stopped and said, "Wait. That was a mess up." He tried again, but again stopped mid-sentence and said, "No wait, that was another mess up." And then he started a third time, only to stop yet again to announce that he had made another "mess up." Finally, on the fourth try, he was able to verbally express his thought.
I know the frustration of talking to someone on a cell phone that cuts in and out. I wonder what it might feel like to have regular, face-to-face conversations cut in and out in the same way. Probably I'd do just what Ben does--I'd find new ways to communicate, preferably without using words, or I'd simply stop trying to listen. Because really, there's not much more frustrating than having to tell someone, "I can't hear you--you're breaking up!"
I laughed at first, but then realized that he might have been accurately describing his experience. James Ball, author of "Early Intervention & Autism," stresses that autistic children struggle to process verbal information--particularly in chaotic situations. I'd say that between my raised voice, the blaring television in the next room, and his siblings' nearby hooting (apparently I've given birth to a parliament of owls), Ben wasn't able to process much at all of my tirade. It may truly have sounded to him like I was breaking up, as the synapses in his brain fired on and off in an effort to process all the sounds around him.
Ball's comments also help explain Ben's urgent need to find signs and symbols that represent verbal words. For example, last summer Ben and I were attending one of Joey's (my 9-year-old) baseball games. I was so pleased to look over at one point and discover that Ben was standing among a few other children who were about his age, rather than wandering around by himself. Suddenly, though, he reappeared back at my side and said, "Mom, how do I say 'I don't know' in sign language?" I told him that I wasn't sure. He responded, "Oh. Maybe it's like this," and then he made a series of enigmatic hand motions, pointing to his head, then waving his fingers away from his body. Satisfied that he had figured it out, he ran off again toward his new friends and immediately repeated his signals as if everyone might take his meaning. He didn't seem to notice the blank look on the children's faces as they watched him and then turned back to their own games.
One evening several months ago, I instructed Ben to go upstairs and get his pajamas on. He turned to me, blew directly into my face, and then explained, "If I blow on you, it means yes." And then he trotted upstairs to change his clothes. For several days after that, he regularly blew in my and others' faces as a way to express his opinion--sometimes positively, and sometimes not.
It's hard to have a conversation with Ben, partly because he loses interest a few sentences into the effort, but also because if Ben's train of thought gets derailed midway through a sentence, he can't just pick up where he left off. He has to go back to the beginning of the sentence and start over again. Often Ben will begin a sentence four or five times before he can get all the way through it--and he and his listeners get frustrated after too much of that. Tonight, Ben was trying to tell me about something he learned in school. He started talking, but then stopped and said, "Wait. That was a mess up." He tried again, but again stopped mid-sentence and said, "No wait, that was another mess up." And then he started a third time, only to stop yet again to announce that he had made another "mess up." Finally, on the fourth try, he was able to verbally express his thought.
I know the frustration of talking to someone on a cell phone that cuts in and out. I wonder what it might feel like to have regular, face-to-face conversations cut in and out in the same way. Probably I'd do just what Ben does--I'd find new ways to communicate, preferably without using words, or I'd simply stop trying to listen. Because really, there's not much more frustrating than having to tell someone, "I can't hear you--you're breaking up!"
Wednesday, October 14, 2009
What's a Picture Worth?
Ben was the easiest baby born to human parents. He was docile, quiet (too quiet, really), and content to sit in one spot for hours, staring blankly at whatever parade of activity passed in front of him. He didn't roll over, as most infants eventually do, until he was six months old. He didn't crawl until he was almost one; he didn't walk for another five months after that. Did I worry? No. He was just moving at his own pace, I figured. He was meeting the developmental milestones--just not as quickly as other kids do. But he was my fourth child. He got lots of parental and sibling attention. I supposed that he just didn't see much need to change things up too quickly.
But once he got up and walked, my docile, quiet baby vanished and every waking, toddling moment was soon laced with some form of chaos: he pulled cereal boxes from the pantry to scatter millions of little oat circles across the kitchen floor; he dumped cups full of water or other accessible liquids (notably, my Diet Coke) into lakes and oceans on the carpet; he removed his poopy diapers to create fresco artwork on the walls and floor; he emptied full bottles of shampoo or dish soap onto beds or down the bathtub drain. Did I worry? No. I figured he was just an active kid. Maybe he was making up for lost time.
He was four when I sent him to preschool. He couldn't sit still, couldn't interact with other children in appropriate ways, couldn't control himself from hitting, kicking, or spitting on others, and often ran out of the classroom either into the hallway or else out the door into the parking lot when he spotted an opportunity (little jail breaker!). Did I worry? No. I figured he had ADHD, and took him to the doctor for a prescription that actually helped a lot.
I didn't worry when he started kindergarten, either, and couldn't tolerate sharing a table with other children. He never played with other kids on the playground. He often still pinched, pushed, and hit his classmates, but I figured that his meds needed some adjusting.
And then came Picture Day, which happened first thing in the morning for the kindergarten class. By 9:00 a.m., his whole class had smiled and said "cheese" for the strange guy with the rubber chicken. By 9:30, the school principal called me to say that Ben's behavior had escalated to a point where they could no longer keep him in school. I picked him up, drove him home, and finally started to worry--particularly after I began to cry and Ben punched me and said, "You're a big crybaby. You're a stupid crybaby!"
We've come a long way since Picture Day last year. With a diagnosis and a treatment plan in place, Ben's making some slow but certain progress. So when yesterday--Picture Day--rolled around again, I thought for just a moment about sending a note to his teacher to warn her that Ben might have a tough day. And then I changed my mind. It seemed like he was having a good morning, so I decided not to worry about it after all. Still, I wasn't entirely surprised when the principal called me at lunch time to report that Ben was sitting there in his office with him, after spending lunch spitting on, kicking, and pushing other children.
I thought a lot last night about what Picture Day means to an autistic child, and realized that it must almost feel like a horrid personal violation to him. Ben doesn't make eye contact with anyone--not even me, and I'm his closest connection in the world. Imagine if every time you were asked to look someone in the eye, your brain began shooting off electrons in a frenzy that would rival the finale of a 4th of July fireworks show. I think that's what it's like for Ben when he's asked to make interpersonal connections. Yet on Picture Day, he's put on a stool--the center of attention--and commanded to look up, look here, smile, and say magical, grin-inducing words. His over-firing brain can't have much left by the time that ordeal is over. So of course, Picture Day is almost impossibly hard for him to survive without some level of emotional overload.
Is it worth it? Do I continue to force him through that level of over-stimulation every single year for the rest of his educational career? I love his school pictures, and I cherish the memories that each picture inspires. But what about him? I think I have to remember that on Picture Day, Ben will always need a chance to regain some kind of balance and quiet in his own mind once the photo has been taken.
The fact is, Ben needs me to worry a little more about Picture Day.
But once he got up and walked, my docile, quiet baby vanished and every waking, toddling moment was soon laced with some form of chaos: he pulled cereal boxes from the pantry to scatter millions of little oat circles across the kitchen floor; he dumped cups full of water or other accessible liquids (notably, my Diet Coke) into lakes and oceans on the carpet; he removed his poopy diapers to create fresco artwork on the walls and floor; he emptied full bottles of shampoo or dish soap onto beds or down the bathtub drain. Did I worry? No. I figured he was just an active kid. Maybe he was making up for lost time.
He was four when I sent him to preschool. He couldn't sit still, couldn't interact with other children in appropriate ways, couldn't control himself from hitting, kicking, or spitting on others, and often ran out of the classroom either into the hallway or else out the door into the parking lot when he spotted an opportunity (little jail breaker!). Did I worry? No. I figured he had ADHD, and took him to the doctor for a prescription that actually helped a lot.
I didn't worry when he started kindergarten, either, and couldn't tolerate sharing a table with other children. He never played with other kids on the playground. He often still pinched, pushed, and hit his classmates, but I figured that his meds needed some adjusting.
And then came Picture Day, which happened first thing in the morning for the kindergarten class. By 9:00 a.m., his whole class had smiled and said "cheese" for the strange guy with the rubber chicken. By 9:30, the school principal called me to say that Ben's behavior had escalated to a point where they could no longer keep him in school. I picked him up, drove him home, and finally started to worry--particularly after I began to cry and Ben punched me and said, "You're a big crybaby. You're a stupid crybaby!"
We've come a long way since Picture Day last year. With a diagnosis and a treatment plan in place, Ben's making some slow but certain progress. So when yesterday--Picture Day--rolled around again, I thought for just a moment about sending a note to his teacher to warn her that Ben might have a tough day. And then I changed my mind. It seemed like he was having a good morning, so I decided not to worry about it after all. Still, I wasn't entirely surprised when the principal called me at lunch time to report that Ben was sitting there in his office with him, after spending lunch spitting on, kicking, and pushing other children.
I thought a lot last night about what Picture Day means to an autistic child, and realized that it must almost feel like a horrid personal violation to him. Ben doesn't make eye contact with anyone--not even me, and I'm his closest connection in the world. Imagine if every time you were asked to look someone in the eye, your brain began shooting off electrons in a frenzy that would rival the finale of a 4th of July fireworks show. I think that's what it's like for Ben when he's asked to make interpersonal connections. Yet on Picture Day, he's put on a stool--the center of attention--and commanded to look up, look here, smile, and say magical, grin-inducing words. His over-firing brain can't have much left by the time that ordeal is over. So of course, Picture Day is almost impossibly hard for him to survive without some level of emotional overload.
Is it worth it? Do I continue to force him through that level of over-stimulation every single year for the rest of his educational career? I love his school pictures, and I cherish the memories that each picture inspires. But what about him? I think I have to remember that on Picture Day, Ben will always need a chance to regain some kind of balance and quiet in his own mind once the photo has been taken.
The fact is, Ben needs me to worry a little more about Picture Day.
Saturday, October 3, 2009
Doing This Stuff...
A couple nights ago, I sat down at the kitchen table next to Ben after having been gone all afternoon and evening with Izzy to her Nutcracker rehearsal in Salt Lake. Apparently, Ben and his brothers had been saving up questions with which to bombard me upon my return. Within moments of sitting down, the kids began competing for my attention, all talking at the same time, each word a little louder than the last, in an effort to be heard first. It was chaotic, and too much for Ben. So he communicated a different way: he pulled back his fist and punched me in the back as hard as he could. Chris (my dh) jumped up, picked up Ben, and hustled him upstairs to our bedroom, where he tucked him into our bed until Ben could calm down and fall asleep. I listened as Ben screamed and yelled, and when he finally quieted down, I went upstairs to talk to him.
I crawled up next to him on the bed and said, "Ben, it really hurt me when you hit me." He replied, "I don't care if it hurt you. Because you wouldn't listen to me." I explained that hitting is not the way to get attention, even if everyone else is talking and yelling. He responded "Oh," and then looked blankly toward the ceiling. That's usually my cue that he's done talking. But I wanted to finish our conversation with some praise so I added, "Ben, I'm really proud of you right now, because you are calm, and you are using your words, and being really good." He looked at me and said in a very matter-of-fact tone, "Well, I don't want to be good. I'm only doing this stuff so I don't be in trouble."
I give him double-points for being honest. But I wonder: is Ben's behavior, good and bad, always so utilitarian in nature? He had a terrific week at school last week; he earned every sticker he could on his "good behavior" chart and only got "Good Day!" and smiley faces in the comments section of the chart. Truthfully, I feared for a couple days that Ben had actually stolen his teacher's stickers and given himself such high praise, but I don't think he has mastered a perfect forgery of her handwriting. Yet.
On the topic of school, Ben is struggling with spelling tests. Such a verbal skill: hear a word, process the sounds mentally, convert them to their letter-referents, and then transcribe them onto paper. The first week, I tried studying spelling words with Ben the same way I've always done it with all my other kids: I say the word; Ben repeats the letters--an entirely verbal activity. I thought it worked well, until he missed every word on the test. And then the little light-bulb clicked on over my head (well, first it swung down and cracked me across the skull with a little "Duh!" sound). Ben can't process verbal information very well. His strength is in tactile, hands-on skills. So the next week, I spent one night having him write the words down on paper. The next night, we sat on the couch with imaginary chalk boards in front of us. I said a word, and then Ben "wrote" the word, letter by letter, on his chalk board. It became quite an elaborate activity--at least in Ben's creative mind. He was pulling boards down, sliding them over, scratching erasers over them, trading boards with me if mine seemed bigger than his, and at the end of the activity he carefully folded up our imaginary boards and tucked them under the coffee table. The next day when I suggested we use our imaginary boards to practice again, he ran upstairs to the living room, made a series of banging and clacking sounds, and returned with the invisible boards tucked under his arm. He hung each (mine and his) on imaginary hooks over our heads, and we went through the spelling list again. That week, he only missed one word on his test. Sweetest are the small victories, I think.
But most importantly, I finally started to get it into my own head that Ben's world operates by "doing"--not "saying." He disassembles his toys, screw by screw, as his way of deriving joy from them. His favorite television show is "How It's Made"--a show on the Science Channel which details the mechanical process of creating various objects such as radios, gloves, hockey helmets, and compact discs. He can watch several episodes of that show in a single sitting and never get bored. By contrast, I am a student and teacher of English; I love and live in a world of words and language. I struggle to understand Ben's daily experiences as clusters of motion and action, rather than verbal expression. And yet, whether he's behaving or not, and whether he wants praise or just wants to avoid getting in trouble, Ben is "doing this stuff" because that's how his mind makes sense of his environment: Doing, doing, doing.
I crawled up next to him on the bed and said, "Ben, it really hurt me when you hit me." He replied, "I don't care if it hurt you. Because you wouldn't listen to me." I explained that hitting is not the way to get attention, even if everyone else is talking and yelling. He responded "Oh," and then looked blankly toward the ceiling. That's usually my cue that he's done talking. But I wanted to finish our conversation with some praise so I added, "Ben, I'm really proud of you right now, because you are calm, and you are using your words, and being really good." He looked at me and said in a very matter-of-fact tone, "Well, I don't want to be good. I'm only doing this stuff so I don't be in trouble."
I give him double-points for being honest. But I wonder: is Ben's behavior, good and bad, always so utilitarian in nature? He had a terrific week at school last week; he earned every sticker he could on his "good behavior" chart and only got "Good Day!" and smiley faces in the comments section of the chart. Truthfully, I feared for a couple days that Ben had actually stolen his teacher's stickers and given himself such high praise, but I don't think he has mastered a perfect forgery of her handwriting. Yet.
On the topic of school, Ben is struggling with spelling tests. Such a verbal skill: hear a word, process the sounds mentally, convert them to their letter-referents, and then transcribe them onto paper. The first week, I tried studying spelling words with Ben the same way I've always done it with all my other kids: I say the word; Ben repeats the letters--an entirely verbal activity. I thought it worked well, until he missed every word on the test. And then the little light-bulb clicked on over my head (well, first it swung down and cracked me across the skull with a little "Duh!" sound). Ben can't process verbal information very well. His strength is in tactile, hands-on skills. So the next week, I spent one night having him write the words down on paper. The next night, we sat on the couch with imaginary chalk boards in front of us. I said a word, and then Ben "wrote" the word, letter by letter, on his chalk board. It became quite an elaborate activity--at least in Ben's creative mind. He was pulling boards down, sliding them over, scratching erasers over them, trading boards with me if mine seemed bigger than his, and at the end of the activity he carefully folded up our imaginary boards and tucked them under the coffee table. The next day when I suggested we use our imaginary boards to practice again, he ran upstairs to the living room, made a series of banging and clacking sounds, and returned with the invisible boards tucked under his arm. He hung each (mine and his) on imaginary hooks over our heads, and we went through the spelling list again. That week, he only missed one word on his test. Sweetest are the small victories, I think.
But most importantly, I finally started to get it into my own head that Ben's world operates by "doing"--not "saying." He disassembles his toys, screw by screw, as his way of deriving joy from them. His favorite television show is "How It's Made"--a show on the Science Channel which details the mechanical process of creating various objects such as radios, gloves, hockey helmets, and compact discs. He can watch several episodes of that show in a single sitting and never get bored. By contrast, I am a student and teacher of English; I love and live in a world of words and language. I struggle to understand Ben's daily experiences as clusters of motion and action, rather than verbal expression. And yet, whether he's behaving or not, and whether he wants praise or just wants to avoid getting in trouble, Ben is "doing this stuff" because that's how his mind makes sense of his environment: Doing, doing, doing.
Thursday, September 24, 2009
Feewing Nuffing
Last weekend as part of the weekly "give dead trees to those you love" ritual, wherein all classwork completed during the week is dragged home and piled on my bed, Ben handed me a "feelings" worksheet that his classmates had completed. I say "his classmates completed" because Ben's own copy was blank.
The assignment had been to draw a picture of himself looking "happy" in the top box on the page, and then in the bottom box, to draw himself feeling any other emotion that he might have also felt that day. Suggestions beneath the box included sad, anxious, embarrassed, disappointed, excited, etc. I took the bait. "Ben," I asked, "why didn't you draw any picture on this worksheet?" He shrugged. "I don't know." Undeterred, I tried again: "Ben, how about the bottom box? What kinds of feelings did you have that you could draw here?" Another shrug. Now, the definition of insanity is repeating the same action while expecting a different result. I'm obviously insane. "Ben," I asked a third time, "Didn't you feel happy, or maybe you were worried about your spelling test? Or something?"
That was enough for Ben. He looked away and shouted, "I was feewing nuffing!"
Yes, he'll work on "l" and "th" sounds with the speech therapist this year. More troubling to me is that this isn't the first time he has said that he "feews nuffing." A couple weeks ago, when he was having trouble with impulsively hitting his peers, I tried to understand what motivated that behavior. I asked him then what he was feeling when he hit his classmates: "Nuffing." I thought he might just need some words, so I offered some. "Ben, were you feeling busy inside, or all crazy inside, and it just made you hit somebody?" Another shout: "No! I don't feew nuffing."
Is it possible that he really doesn't feel anything? I don't think so. I've seen him when he's sad. I've seen him when he's excited. I've seen him when he's worried. The emotion is in his eyes and in his voice. He feels things. I think it's just really hard for him to process the emotion, analyze what it is, and give a name to it. That's a complex cognitive process--many "normal" adults struggle sometimes to identify what they're feeling at any given moment. I don't know what is fair to expect from him, and what is beyond the reach of any 6-year-old child.
I wish I knew how to help him make those connections. But I don't. His IEP goal, which he's working on with the school psychologist, is to be able to identify and express his emotions. But so far, when I ask him what he does when he visits Mr. Gallacher, he says, "We just watched a movie." When I press him to find out what the movie was about, I get the perfunctory "I don't know" response. I guess that means "nuffing."
We were feeling hopeful that Ben was connecting with some of his peers when he was successfully interacting with his math partner for a week or two. As of last week, however, he regularly hits his math partner, because the partner "doesn't obey the rules." Now, I hate it when people don't follow the rules, too. I don't need to hit them (well, let's be honest--sometimes I'd like to hit the guy who drives too slow in the left lane on the freeway), but I guess Ben doesn't have any other way yet to express his frustration. His teacher indicated yesterday that she was going to switch him to a new partner. I'm hoping it's a really rule-bound kid, for his own safety. After all, Ben may be feewing nuffing, but he's got a heck of a right hook.
The assignment had been to draw a picture of himself looking "happy" in the top box on the page, and then in the bottom box, to draw himself feeling any other emotion that he might have also felt that day. Suggestions beneath the box included sad, anxious, embarrassed, disappointed, excited, etc. I took the bait. "Ben," I asked, "why didn't you draw any picture on this worksheet?" He shrugged. "I don't know." Undeterred, I tried again: "Ben, how about the bottom box? What kinds of feelings did you have that you could draw here?" Another shrug. Now, the definition of insanity is repeating the same action while expecting a different result. I'm obviously insane. "Ben," I asked a third time, "Didn't you feel happy, or maybe you were worried about your spelling test? Or something?"
That was enough for Ben. He looked away and shouted, "I was feewing nuffing!"
Yes, he'll work on "l" and "th" sounds with the speech therapist this year. More troubling to me is that this isn't the first time he has said that he "feews nuffing." A couple weeks ago, when he was having trouble with impulsively hitting his peers, I tried to understand what motivated that behavior. I asked him then what he was feeling when he hit his classmates: "Nuffing." I thought he might just need some words, so I offered some. "Ben, were you feeling busy inside, or all crazy inside, and it just made you hit somebody?" Another shout: "No! I don't feew nuffing."
Is it possible that he really doesn't feel anything? I don't think so. I've seen him when he's sad. I've seen him when he's excited. I've seen him when he's worried. The emotion is in his eyes and in his voice. He feels things. I think it's just really hard for him to process the emotion, analyze what it is, and give a name to it. That's a complex cognitive process--many "normal" adults struggle sometimes to identify what they're feeling at any given moment. I don't know what is fair to expect from him, and what is beyond the reach of any 6-year-old child.
I wish I knew how to help him make those connections. But I don't. His IEP goal, which he's working on with the school psychologist, is to be able to identify and express his emotions. But so far, when I ask him what he does when he visits Mr. Gallacher, he says, "We just watched a movie." When I press him to find out what the movie was about, I get the perfunctory "I don't know" response. I guess that means "nuffing."
We were feeling hopeful that Ben was connecting with some of his peers when he was successfully interacting with his math partner for a week or two. As of last week, however, he regularly hits his math partner, because the partner "doesn't obey the rules." Now, I hate it when people don't follow the rules, too. I don't need to hit them (well, let's be honest--sometimes I'd like to hit the guy who drives too slow in the left lane on the freeway), but I guess Ben doesn't have any other way yet to express his frustration. His teacher indicated yesterday that she was going to switch him to a new partner. I'm hoping it's a really rule-bound kid, for his own safety. After all, Ben may be feewing nuffing, but he's got a heck of a right hook.
Sunday, September 13, 2009
Making Me Sick!
A few days ago, Ben rushed upstairs from the family room to where I was standing in the kitchen. He said, "Mom, come here--quick!" with the same urgency that he might have said, "The basement is flooding," or "There's a giant spider crawling up my leg!" As I followed him back down the stairs I asked him what was upsetting him. He replied, "Two pictures on the wall are crooked and it's making me sick!" Sure enough, two pictures in the family room were hanging slightly off-center (well, only one was really off, but it made the other one look crooked, too), and he was feeling anxious and unsettled by the lack of symmetry and order.
Odd, of course, that a child who demands such order still creates such chaos in our home. I am sure that if I could keep our house in spotless, everything-in-its-place condition, he might experience less internal anxiety and confusion. But truly, I cannot catch up with him. I have never been able to keep up with him. When he was a toddler, the schedule typically went something like this: (1:15 p.m.) I catch Ben dumping some kind of shampoo / toothpaste / maple syrup concoction on his brother's bed, and while I am mopping that up, (1:19 p.m.) Ben is in the living room coloring on the sofa with ball point pens. When I move to clean the sofa (1:34 p.m.) he scatters the day's mail, newspaper, and any other papers left on the table all over the floor while heading to the family room to pour cups of water onto the carpet. When I finally get to that mess (1:47 p.m.), he's already back upstairs peeling paint off the walls or shorting out the entire top floor of the house with a spoon inserted into an electrical outlet (HOW he didn't get hurt while blacking out the upstairs, I still can't understand). I wish I could say that I'm exaggerating a bit for dramatic effect, but those of you who ever spent much time with us during those years know that this is exactly how things went, from the time Ben woke up every morning until the time he went to bed at night. It was overwhelming.
Is it better now that he's six? Sometimes. There is less incidence of shampoo and syrup joining together in unlikely combinations, and after I explained to Ben that pouring water onto the carpet was damaging our house (leading to an unexpected outburst of sadness and tears), he hasn't done so much of that lately. But the paint on the walls seems to peel off far too easily to resist (there must be something therapeutic in that motion), and every paper stacked on a table seems to demand relocation to the floor. Toys are dragged out from every room to be stacked, combined, and aligned or else dismantled via screwdriver and hammer (rarely are toys played with like actual toys), but they never seem to make their way back to their original locations. Folding clothes is a skill he hasn't learned yet (yes, we've tried. Some autistic kids aren't even dressing themselves yet at age six, so I think we're actually advanced on the occupational tasks), so clothes are strewn all over the house--whenever he gets hot, or can't stand the feeling of the fabric on his skin, he peels them off wherever he is and drops them on the floor. On a positive note, when given freshly folded clothes to put away, they do go into drawers. Well, drawer. Singular. Everything in one drawer. But I'll take it.
So you're wondering why I don't make him clean up after himself? Why don't I teach him to be tidy? Believe me, I try--continually we work on cleaning skills. But the task is akin to teaching apple trees to grow oranges. While I try to get him to put puzzle pieces away, he blows in my face and asks if we have more otter pops. I refocus him on the puzzle pieces, but he needs to know why some people have secret rooms in their houses. I make one more effort to focus on the puzzle pieces, but he's wondering why Utah doesn't have potatoes (translation: "tornadoes") like other places. Cleaning is a complex series of tasks that his mind simply cannot process. At least, not all at once. If I can find ways to break his jobs into one or two very simple steps, he does better...but not all cleaning jobs lend themselves to that kind of patience (mine) or focus (his). We're working on it...
By way of school update, the speech therapist finished all her testing and the results were actually hopeful. In most social contexts, Ben can understand what's going on at least at an average level (sometimes on the low side of average, but still average). That means that Ben has the ability to interact with his environment in appropriate ways. It doesn't mean he has any interest in doing it, but having the skills is a big chunk of the battle. Aside from that, his speech is problematic--there are six or seven letters that he cannot pronounce in any position (beginning, medial, or final), which is why we often think he's speaking Mandarin, Klingon, or a unique dialect of Manda-Klingon.
But here's the big news: drum roll... We finally have an IEP in place!
On his current medication, Ben has been having very good days at school. His impulsive moments (randomly hitting or pushing another child) are limited to once or twice a week, and for the most part he's getting his work done in school...sort of. So his current IEP doesn't include much of a behavioral or academic component right now. If we have to modify it to add some behavioral or academic strategies down the line, we will. For now, he's working with the speech therapist twice a week on articulation, and once a week he's pulled out by the school psychologist to work on social skills. His IEP goals in that area include learning to identify his own feelings, and then express those feelings in appropriate ways. How interesting it would be to see that happen. He's also supposed to learn how to ask other children to play with him, and then how to play in socially acceptable ways. Again, he might learn the skills, but he won't necessarily want to use them.
So that's where we are this week, and that's where I'll leave off. After all, there are papers and toys all over the floor, and I need to go clean them up--they're making me a little bit sick, too.
Odd, of course, that a child who demands such order still creates such chaos in our home. I am sure that if I could keep our house in spotless, everything-in-its-place condition, he might experience less internal anxiety and confusion. But truly, I cannot catch up with him. I have never been able to keep up with him. When he was a toddler, the schedule typically went something like this: (1:15 p.m.) I catch Ben dumping some kind of shampoo / toothpaste / maple syrup concoction on his brother's bed, and while I am mopping that up, (1:19 p.m.) Ben is in the living room coloring on the sofa with ball point pens. When I move to clean the sofa (1:34 p.m.) he scatters the day's mail, newspaper, and any other papers left on the table all over the floor while heading to the family room to pour cups of water onto the carpet. When I finally get to that mess (1:47 p.m.), he's already back upstairs peeling paint off the walls or shorting out the entire top floor of the house with a spoon inserted into an electrical outlet (HOW he didn't get hurt while blacking out the upstairs, I still can't understand). I wish I could say that I'm exaggerating a bit for dramatic effect, but those of you who ever spent much time with us during those years know that this is exactly how things went, from the time Ben woke up every morning until the time he went to bed at night. It was overwhelming.
Is it better now that he's six? Sometimes. There is less incidence of shampoo and syrup joining together in unlikely combinations, and after I explained to Ben that pouring water onto the carpet was damaging our house (leading to an unexpected outburst of sadness and tears), he hasn't done so much of that lately. But the paint on the walls seems to peel off far too easily to resist (there must be something therapeutic in that motion), and every paper stacked on a table seems to demand relocation to the floor. Toys are dragged out from every room to be stacked, combined, and aligned or else dismantled via screwdriver and hammer (rarely are toys played with like actual toys), but they never seem to make their way back to their original locations. Folding clothes is a skill he hasn't learned yet (yes, we've tried. Some autistic kids aren't even dressing themselves yet at age six, so I think we're actually advanced on the occupational tasks), so clothes are strewn all over the house--whenever he gets hot, or can't stand the feeling of the fabric on his skin, he peels them off wherever he is and drops them on the floor. On a positive note, when given freshly folded clothes to put away, they do go into drawers. Well, drawer. Singular. Everything in one drawer. But I'll take it.
So you're wondering why I don't make him clean up after himself? Why don't I teach him to be tidy? Believe me, I try--continually we work on cleaning skills. But the task is akin to teaching apple trees to grow oranges. While I try to get him to put puzzle pieces away, he blows in my face and asks if we have more otter pops. I refocus him on the puzzle pieces, but he needs to know why some people have secret rooms in their houses. I make one more effort to focus on the puzzle pieces, but he's wondering why Utah doesn't have potatoes (translation: "tornadoes") like other places. Cleaning is a complex series of tasks that his mind simply cannot process. At least, not all at once. If I can find ways to break his jobs into one or two very simple steps, he does better...but not all cleaning jobs lend themselves to that kind of patience (mine) or focus (his). We're working on it...
By way of school update, the speech therapist finished all her testing and the results were actually hopeful. In most social contexts, Ben can understand what's going on at least at an average level (sometimes on the low side of average, but still average). That means that Ben has the ability to interact with his environment in appropriate ways. It doesn't mean he has any interest in doing it, but having the skills is a big chunk of the battle. Aside from that, his speech is problematic--there are six or seven letters that he cannot pronounce in any position (beginning, medial, or final), which is why we often think he's speaking Mandarin, Klingon, or a unique dialect of Manda-Klingon.
But here's the big news: drum roll... We finally have an IEP in place!
On his current medication, Ben has been having very good days at school. His impulsive moments (randomly hitting or pushing another child) are limited to once or twice a week, and for the most part he's getting his work done in school...sort of. So his current IEP doesn't include much of a behavioral or academic component right now. If we have to modify it to add some behavioral or academic strategies down the line, we will. For now, he's working with the speech therapist twice a week on articulation, and once a week he's pulled out by the school psychologist to work on social skills. His IEP goals in that area include learning to identify his own feelings, and then express those feelings in appropriate ways. How interesting it would be to see that happen. He's also supposed to learn how to ask other children to play with him, and then how to play in socially acceptable ways. Again, he might learn the skills, but he won't necessarily want to use them.
So that's where we are this week, and that's where I'll leave off. After all, there are papers and toys all over the floor, and I need to go clean them up--they're making me a little bit sick, too.
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