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.
Thursday, September 24, 2009
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.
Friday, September 4, 2009
Fruit Blood
Yesterday, Ben bit into a plum, gasped, and cried out, "Oh no! Fruit blood!" He was genuinely disturbed to think that his plum (which he always just calls 'fruit') might have been injured when he bit into it. Or maybe he was just disgusted that said fruit had blood.
I'd like to climb inside Ben's brain for a day or two and see how it feels to be him. There are times when I watch him and I'm overcome with grief and sadness--until I look a little more closely and recognize that my values, my joys, my comforts are not his. His peace comes in different ways. For example, last summer I took Joey to one of his baseball games and Ben was with me. Joey's was the first game of the day, and we had arrived especially early to the ball field. No other parents or spectators had yet arrived. Joey ran off with his team to some remote spot to warm up, and Ben hopped out of the car and headed toward the still-deserted bleachers. I was reading my book in the car, which happened to be parked just beyond the outfield, looking straight toward those bleachers.
When I looked up, I saw Ben sitting in the center of the top bench of the bleachers, silhouetted in the setting sun behind him, completely alone, and my eyes filled with tears. It was such a poignant scene--my little blond-headed boy, all alone, staring at an empty baseball field. I felt an overwhelming sense of isolation and sadness for him.
But then I looked closer, and my perspective suddenly shifted. I realized that Ben felt neither alone nor isolated. Sitting there in the summer quiet with hands folded on his lap, the sun warming his back, the breeze brushing his face, he was entirely peaceful. And that's when I realized that my own experience is not an accurate way to measure his. Where I might feel lonely, he feels safe. Where I might feel rejected, he feels content.
But all things have their opposite, and I'm trying to keep a perspective on that as well. So, in busy, high-energy situations where I might feel energized, Ben feels confused and chaotic. Where I might feel curious to explore a new environment, Ben feels overwhelmed.
I find that if I can remember how different Ben's experience is from mine, even in identical circumstances, it makes it easier to understand his behaviors. I've been reading a great book called "Early Intervention & Autism" (James Ball), and Ball says that parents of autistic children should hang a sign on their wall that reads: "Behavior is communication. Behavior is communication. Behavior is communication. Get the point?" I'm slowly getting the point.
The trick is learning to translate what the behavior is trying to communicate. When Ben melts down and all I can do is try to hold him while he scratches, bites, kicks, and spits on me, I desperately need to know what he's trying to say. Maybe someday I'll become a master translator. For now, it's one melt down at a time and we don't always communicate very well at all.
The speech therapist at the school called me today and reported that the testing is all complete. She didn't give me any indication of the results, but we've set up a meeting for next Wednesday to discuss them. And THEN we'll set up an IEP meeting. In the meantime, Ben's been doing well in school. Generally focused, generally able to control his impulsivity. Not putting much effort into his assignments yet, but...we'll get there. We can only handle so much fruit blood at a time.
I'd like to climb inside Ben's brain for a day or two and see how it feels to be him. There are times when I watch him and I'm overcome with grief and sadness--until I look a little more closely and recognize that my values, my joys, my comforts are not his. His peace comes in different ways. For example, last summer I took Joey to one of his baseball games and Ben was with me. Joey's was the first game of the day, and we had arrived especially early to the ball field. No other parents or spectators had yet arrived. Joey ran off with his team to some remote spot to warm up, and Ben hopped out of the car and headed toward the still-deserted bleachers. I was reading my book in the car, which happened to be parked just beyond the outfield, looking straight toward those bleachers.
When I looked up, I saw Ben sitting in the center of the top bench of the bleachers, silhouetted in the setting sun behind him, completely alone, and my eyes filled with tears. It was such a poignant scene--my little blond-headed boy, all alone, staring at an empty baseball field. I felt an overwhelming sense of isolation and sadness for him.
But then I looked closer, and my perspective suddenly shifted. I realized that Ben felt neither alone nor isolated. Sitting there in the summer quiet with hands folded on his lap, the sun warming his back, the breeze brushing his face, he was entirely peaceful. And that's when I realized that my own experience is not an accurate way to measure his. Where I might feel lonely, he feels safe. Where I might feel rejected, he feels content.
But all things have their opposite, and I'm trying to keep a perspective on that as well. So, in busy, high-energy situations where I might feel energized, Ben feels confused and chaotic. Where I might feel curious to explore a new environment, Ben feels overwhelmed.
I find that if I can remember how different Ben's experience is from mine, even in identical circumstances, it makes it easier to understand his behaviors. I've been reading a great book called "Early Intervention & Autism" (James Ball), and Ball says that parents of autistic children should hang a sign on their wall that reads: "Behavior is communication. Behavior is communication. Behavior is communication. Get the point?" I'm slowly getting the point.
The trick is learning to translate what the behavior is trying to communicate. When Ben melts down and all I can do is try to hold him while he scratches, bites, kicks, and spits on me, I desperately need to know what he's trying to say. Maybe someday I'll become a master translator. For now, it's one melt down at a time and we don't always communicate very well at all.
The speech therapist at the school called me today and reported that the testing is all complete. She didn't give me any indication of the results, but we've set up a meeting for next Wednesday to discuss them. And THEN we'll set up an IEP meeting. In the meantime, Ben's been doing well in school. Generally focused, generally able to control his impulsivity. Not putting much effort into his assignments yet, but...we'll get there. We can only handle so much fruit blood at a time.
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