I watched a movie this week called My Name is Khan. It's a foreign film following the life of the fictional character Khan, an Indian man with Asperger's. One of the fascinating aspects of the movie was Khan's ways of dealing with emotions. At one point he wrote in a journal that although he could not express emotions in language, he could write his feelings on a page, and in another scene in the movie he broke down and cried after being overwhelmed by the death of his son and his separation from his wife (another fascinating element of the movie--that he was able to court and marry a woman without ever verbally or physically expressing love or affection toward her in traditional ways).
Anyway, these explorations of feeling and expressing emotion brought to mind an experience that we had with Ben a few weeks ago. Ben had gone out into the backyard to play, when suddenly he came rushing back into the house, gulping in air while tears spilled down his cheeks. I asked him what happened, and he said, "Stockton [our oversized moose of a Labrador retriever] just jumped up on me and I hate when he jumps on me!"
I said, "Oh Ben--you're sad!" He immediately retorted, "No I'm not!" I then pointed out that he was crying. He quickly yelled, "I am not crying! My eyes just got all wet like this for no reason at all!"
No amount of negotiating could help him understand that when his eyes get all wet, it's because he's feeling an emotion that overcomes him in some way. And this isn't the first time something like this has happened. At other times, too, he has begun to cry over something and then exclaimed, "I hate when my eyes get all wet like this!" He recognizes the physical manifestation of his emotion, but he can't seem to associate an underlying feeling with it.
I'm wondering how this ties into empathy, and the challenges that Ben has both in identifying what other people might be feeling and also in responding empathetically. When Ben's great-grandfather and his grandfather both died within two weeks of each other last year, Ben's only response upon hearing that each had died was, "He did? Oh. Well at least we'll see him again when we go to heaven." That was it. He never cried, or seemed sad, or understood why people around him were crying. He did ask me during his grandpa's funeral if people were feeling sad, but when I told him they were he shrugged and said, "Anyway we'll just see him again in heaven so it isn't sad."
I went on a cruise a couple months ago, leaving my husband with the kids so my sister and I could enjoy a getaway together. Ben never cried, but he did kick out the plantation shutters in his room the first night I was gone, so I know he missed me. About halfway through the cruise, my husband was writing me an email [mostly to tell me about the new blinds he put up in Ben's window] and he asked Ben if he wanted to include a little message of his own. Ben said, "Um...sure." My husband asked him what he would like to say to me, and Ben replied, "Um...I don't know. Surprise me."
Is such emotional detachment a blessing, or a curse? I wonder often whether Ben will ever become someone who can understand what others are feeling, and want to have such deep connections with another human being that he seeks fulfilling relationships. Is marriage in his future? Will he ever have a girlfriend? Will he ever go to a school dance, or to Prom?
I find that I want these things for him--these impossible things--and my heart aches when I consider that he may never have them. At the same time, maybe he won't miss them. I just don't ever want the day to come when he feels lonely, and doesn't know what to do about it, and suddenly his eyes get all wet, for no reason at all. How do I protect him from that?
Saturday, May 7, 2011
Friday, February 4, 2011
A Mile in My Shoes
I've recently become a fan of the television show Parenthood, which explores the interrelationships of three generations within a family. Most intriguing to me in that show is the storyline of "Max," a 10-year-old recently diagnosed with Asperger's Syndrome, and of the efforts of his immediate and extended family to understand and deal with Max's special needs.
This week on Parenthood, the family patriarch Zeke took his grandson Max on an overnight camping trip. Zeke had expected that the camping trip would be just like every other outing he had ever taken with his sons and other grandsons; however, as any parent of a child on the spectrum has already surmised, things didn't go very smoothly. Zeke eventually found himself frantically dialing his son's (Max's father's) cell phone for advice and help as Max kicked at the dirt and repeatedly screamed, "I want to go home! I want to go home"!
The next morning, Zeke returned home with Max. In that poignant scene, Max went inside with his mother while Zeke stayed outside and spoke to his son about his camping experience with Max. He commented to his son that before the camping trip, he hadn't really understood what it was like for his son and daughter-in-law as they struggled every day to help Max feel safe and connected, but having had this experience, he had a whole new appreciation for what it was like to raise an autistic child.
I suddenly found myself welling with emotion, longing to have friends or family members in my own life who understand what it's like--every day, every hour--to raise a child with autism.
A week or two ago, I thought I'd motivate Ben and his older brother to behave by offering them the chance to go to Walmart and pick out a video game together. They did well throughout the day with the expectations I had set, and so we went to the store. As I should have predicted, though, the boys could not agree on a video game, and as the tension outside the glass video case became palpable, I eventually chose one myself that I thought they could both enjoy, and herded them toward the checkout. Ben began to shout, "No! You said we could pick the game! You said we could choose, but you chose the game! But you said we could choose! That's not fair, mom! It's not fair!" And suddenly we were in a meltdown of Vesuvian proportions. Ben went after his brother first, pushing, punching, kicking. Then he started spitting at him, and then at me, still screaming and flailing.
What was most upsetting to me during those eons that it took me to get the game purchased and get Ben outside to the car wasn't the meltdown itself--I've been through hundreds of those. What hurt was the looks of the other people in the store. They stared at Ben in shock, and then turned their glares to me. From every gaping mouth I could almost hear them whisper, "What kind of mother raises a child like that?" I could see the words "Failure--Terrible--Shameful" etched across every judgmental face. I just wanted to scream, "He's autistic! I'm doing the best I can! Stop judging me!"
But of course, that's not reasonable. All I could do was finish my business and flee as quickly as possible. I desperately needed to find just one person who understood, so I went home and posted an update on Facebook about my experience. When the mother of another autistic child posted, "Been there, done that" on my profile, I was overcome with gratitude--four simple words that assured me that I was not alone, and that someone else understood.
I am surrounded by family and friends who support me, and who love me and my family. But most of them don't get it--no matter how much they want to, or how willing they are to commiserate with me when days are difficult. Because, even when they know on a cognitive level that I cannot work with Ben like I do with my other kids, they still can't mask the look that eases onto their faces when Ben walks naked through the living room in front of visitors, or when he begins a litany of swearing and spitting, and I can see in their eyes that they think I am a bit too permissive, or that I'm not disciplining appropriately. They don't mean to feel that way, I know. But they cannot understand what every day is like, and how every moment I am doing everything in my power to unlock the mysteries of my son's mind enough that I can engage with him in some kind of meaningful way.
Ben is an enormous blessing in our family's life. I adore him, and admire him, and appreciate every quirky, unexpected insight that he shares with us. Nevertheless, during those meltdown moments, I would not wish his challenges on any set of parents. Most days, parenting an autistic child is a lonely, uncharted journey. And sometimes I think I'd give almost anything to have someone--anyone--walk a mile in my shoes, and finally understand the challenges of raising a child on the autism spectrum.
This week on Parenthood, the family patriarch Zeke took his grandson Max on an overnight camping trip. Zeke had expected that the camping trip would be just like every other outing he had ever taken with his sons and other grandsons; however, as any parent of a child on the spectrum has already surmised, things didn't go very smoothly. Zeke eventually found himself frantically dialing his son's (Max's father's) cell phone for advice and help as Max kicked at the dirt and repeatedly screamed, "I want to go home! I want to go home"!
The next morning, Zeke returned home with Max. In that poignant scene, Max went inside with his mother while Zeke stayed outside and spoke to his son about his camping experience with Max. He commented to his son that before the camping trip, he hadn't really understood what it was like for his son and daughter-in-law as they struggled every day to help Max feel safe and connected, but having had this experience, he had a whole new appreciation for what it was like to raise an autistic child.
I suddenly found myself welling with emotion, longing to have friends or family members in my own life who understand what it's like--every day, every hour--to raise a child with autism.
A week or two ago, I thought I'd motivate Ben and his older brother to behave by offering them the chance to go to Walmart and pick out a video game together. They did well throughout the day with the expectations I had set, and so we went to the store. As I should have predicted, though, the boys could not agree on a video game, and as the tension outside the glass video case became palpable, I eventually chose one myself that I thought they could both enjoy, and herded them toward the checkout. Ben began to shout, "No! You said we could pick the game! You said we could choose, but you chose the game! But you said we could choose! That's not fair, mom! It's not fair!" And suddenly we were in a meltdown of Vesuvian proportions. Ben went after his brother first, pushing, punching, kicking. Then he started spitting at him, and then at me, still screaming and flailing.
What was most upsetting to me during those eons that it took me to get the game purchased and get Ben outside to the car wasn't the meltdown itself--I've been through hundreds of those. What hurt was the looks of the other people in the store. They stared at Ben in shock, and then turned their glares to me. From every gaping mouth I could almost hear them whisper, "What kind of mother raises a child like that?" I could see the words "Failure--Terrible--Shameful" etched across every judgmental face. I just wanted to scream, "He's autistic! I'm doing the best I can! Stop judging me!"
But of course, that's not reasonable. All I could do was finish my business and flee as quickly as possible. I desperately needed to find just one person who understood, so I went home and posted an update on Facebook about my experience. When the mother of another autistic child posted, "Been there, done that" on my profile, I was overcome with gratitude--four simple words that assured me that I was not alone, and that someone else understood.
I am surrounded by family and friends who support me, and who love me and my family. But most of them don't get it--no matter how much they want to, or how willing they are to commiserate with me when days are difficult. Because, even when they know on a cognitive level that I cannot work with Ben like I do with my other kids, they still can't mask the look that eases onto their faces when Ben walks naked through the living room in front of visitors, or when he begins a litany of swearing and spitting, and I can see in their eyes that they think I am a bit too permissive, or that I'm not disciplining appropriately. They don't mean to feel that way, I know. But they cannot understand what every day is like, and how every moment I am doing everything in my power to unlock the mysteries of my son's mind enough that I can engage with him in some kind of meaningful way.
Ben is an enormous blessing in our family's life. I adore him, and admire him, and appreciate every quirky, unexpected insight that he shares with us. Nevertheless, during those meltdown moments, I would not wish his challenges on any set of parents. Most days, parenting an autistic child is a lonely, uncharted journey. And sometimes I think I'd give almost anything to have someone--anyone--walk a mile in my shoes, and finally understand the challenges of raising a child on the autism spectrum.
Tuesday, January 25, 2011
Out with the Old...
Before Christmas, we thought we'd encourage the children to purge their rooms of clutter by offering them a dollar per pound of old toys, books, and clothes that they could load into trash bags for donation or to discard. Each of our four children headed off to his or her own bedroom to begin the process of bankrupting us, and eventually three of the kids returned with bulging sacks, eagerly awaiting their payday. Ben, however, did not fill any trash bags and eventually slinked downstairs to watch television.
Later in the day, I asked Ben to join me in his room while I helped him earn some Christmas money by getting rid of old, unused things. First I picked up a small plastic Happy Meal toy from his floor. I said, "Look, Ben--you don't need this old McDonald's toy--let's put it into the bag!"
Ben shrieked. "No! I like that toy! I don't want to get rid of that!"
So, I rummaged around in Ben's overflowing toy basket and found some small plastic pieces in the bottom. I was certain that Ben hadn't even seen these pieces for many, many months. I said, "OK. How about these. Let's just put these into the bag..."
Another shriek, and now Ben was in tears. He cried, "I need those things--I love them! Don't throw them away!"
And so it went a few more times, as I'd find something I was sure Ben no longer used or needed, and he'd insist that the piece was very special to him and he could not part with it.
I tried to reason with him that Christmas was coming, and that he was going to get all kinds of new toys to play with, and then I thought I'd just see what happened if I dropped something into the trash bag--maybe once the deed was done, Ben would see that it wasn't such a big deal.
I was wrong. As I tossed the first Happy Meal toy into the trash bag, Ben went berserk. Sobbing uncontrollably, he picked up the nearest object (a plastic tube from a trophy he had recently disassembled) and hurled it at me. I shielded my face from the blow and ended up with a nasty cut on my wrist as the edge of the tube bounced against my arm. And that was the end of my interest in helping Ben earn some Christmas money. I left the room for a quick time out while he sat on his bed sobbing.
After a few minutes I returned and took Ben onto my lap. He pushed me away and curled into a ball at the foot of his bed. "Ben, what happened?" I asked.
"I had to throw that at you because it was the only way to make you stop putting my things in the trash bag!" he yelled.
My first response was to be glad that he had the insight to explain his behavior--that was a significant milestone for him! My second response, though, was a sudden realization that Ben's objects provide him with an immense sense of safety and control. Throwing away his things--even the ones that he never plays with or even sees--felt to him like I was throwing away the underpinnings of his environment.
This is the child who walks into a home he hasn't been inside for three months, and immediately notices that a light fixture has been changed, or a piece of furniture has been relocated. I don't know how he "sees" things around him, but certainly every object has a place and a purpose, and throwing away some of his things must have felt very frightening and confusing for him. When I realized what the process was like for him, I felt terrible that I had forged ahead so callously.
I'm glad to report that eventually, Ben and I together did find some books and clothes that he decided he no longer needed, and we even identified just a few toys that he agreed were no longer necessary to his schema.
But what I learned most of all is just how important physical objects are to Ben's sense of control and peace.
"In with the new"...absolutely.
"Out with the old"...not so much.
Later in the day, I asked Ben to join me in his room while I helped him earn some Christmas money by getting rid of old, unused things. First I picked up a small plastic Happy Meal toy from his floor. I said, "Look, Ben--you don't need this old McDonald's toy--let's put it into the bag!"
Ben shrieked. "No! I like that toy! I don't want to get rid of that!"
So, I rummaged around in Ben's overflowing toy basket and found some small plastic pieces in the bottom. I was certain that Ben hadn't even seen these pieces for many, many months. I said, "OK. How about these. Let's just put these into the bag..."
Another shriek, and now Ben was in tears. He cried, "I need those things--I love them! Don't throw them away!"
And so it went a few more times, as I'd find something I was sure Ben no longer used or needed, and he'd insist that the piece was very special to him and he could not part with it.
I tried to reason with him that Christmas was coming, and that he was going to get all kinds of new toys to play with, and then I thought I'd just see what happened if I dropped something into the trash bag--maybe once the deed was done, Ben would see that it wasn't such a big deal.
I was wrong. As I tossed the first Happy Meal toy into the trash bag, Ben went berserk. Sobbing uncontrollably, he picked up the nearest object (a plastic tube from a trophy he had recently disassembled) and hurled it at me. I shielded my face from the blow and ended up with a nasty cut on my wrist as the edge of the tube bounced against my arm. And that was the end of my interest in helping Ben earn some Christmas money. I left the room for a quick time out while he sat on his bed sobbing.
After a few minutes I returned and took Ben onto my lap. He pushed me away and curled into a ball at the foot of his bed. "Ben, what happened?" I asked.
"I had to throw that at you because it was the only way to make you stop putting my things in the trash bag!" he yelled.
My first response was to be glad that he had the insight to explain his behavior--that was a significant milestone for him! My second response, though, was a sudden realization that Ben's objects provide him with an immense sense of safety and control. Throwing away his things--even the ones that he never plays with or even sees--felt to him like I was throwing away the underpinnings of his environment.
This is the child who walks into a home he hasn't been inside for three months, and immediately notices that a light fixture has been changed, or a piece of furniture has been relocated. I don't know how he "sees" things around him, but certainly every object has a place and a purpose, and throwing away some of his things must have felt very frightening and confusing for him. When I realized what the process was like for him, I felt terrible that I had forged ahead so callously.
I'm glad to report that eventually, Ben and I together did find some books and clothes that he decided he no longer needed, and we even identified just a few toys that he agreed were no longer necessary to his schema.
But what I learned most of all is just how important physical objects are to Ben's sense of control and peace.
"In with the new"...absolutely.
"Out with the old"...not so much.
Saturday, November 27, 2010
He's Holding the Moon
Last week we traveled to California to spend the Thanksgiving holiday with family. As we loaded the car with luggage, snacks, and movies, I instructed all the children to take their backpacks to their rooms and fill them with activities for the road--books, crayons and paper, small toys, etc. We've been on two other road trips recently, so I felt confident that each child would be able to retrieve appropriate items. Soon the children reemerged with bulging backpacks. We tucked everyone into the car, and set off.
Ben (seven years old) immediately extracted his Nintendo DS from his backpack, and between that and the movies playing in the Suburban's tv/dvd machine, he was content for the first three hours of the drive. Then, as the dark of night crept over us, the car's interior was suddenly illuminated with a soft blue-white glow. My husband glanced at the seat behind me where Ben was sitting, chuckled, and whispered, "Oh--he's holding the moon."
From his backpack Ben had withdrawn the glowing moon that normally hangs on his wall. It's about 15-inches in diameter, concave, and filled with LED lights that illuminate intermittently to resemble the lunar phases.
Using the light of the moon, Ben reached into his backpack again and this time, in true Cat-in-the-Hat fashion, withdrew a full-sized dvd player and assorted cabling, and proceeded to connect his device to the car's existing dvd player--directing me as to the proper hookup of the cables into our vehicle's ceiling-mounted system while he handled the cabling in the back of his own machine. "Why?" I asked him? "Oh, in case the room I stay in doesn't have a dvd player," he said. "But why are we hooking this up to our car right now?" I continued. "Um...I just want to," he answered.
Still in a halo of artificial moonlight, Ben next withdrew a six-inch raw speaker woofer which he had recently extricated from an old karaoke machine. He explained that he needed this for the magnetic properties of the back plate. I asked him why, to which he replied, "Um...I don't know. I just do."
My daughter took Ben's backpack to investigate the remainder of its contents. All that remained were a laser-pen and two screwdrivers--a Phillips, and a flat head. "Why did you bring screwdrivers, Ben?" I asked? "Oh...just in case," he replied. A worried curiosity washed over me: Just in case what?
Turns out, those screwdrivers came in handy over the next week as Ben deftly removed all the hat hooks from his cousin's bedroom wall, disassembled a spin-art toy in order to examine the interior spinning mechanisms, and made an internal repair to one of his cousin's light-up vehicles. None of these things were done with permission or supervision, but none surprised us. Ben's favorite Christmas present last year was a carton of used, broken appliances that I picked up from the local thrift store, along with a new bag of tools. And whenever a replacement appliance or toy appears at our home, Ben's first request is that he be given the old one so that he can take it apart and examine the internal mechanisms. His room is littered with little screws, wires, cables, plastic and metal components of varying shapes and sizes...Sometimes I feel like a street performer who gingerly picks her way barefoot over a path of broken glass as I try to get to Ben's bed at night to tuck him in.
As I've reflected on Ben's choice of "good activities" for the trip, it occurs to me that he chose exactly the right things for himself--he brought the tools and supplies that helped him feel like he was in a comfortable, familiar environment. He doesn't love coloring or reading. He loves building and wiring, and figuring out how the world around him works. So he chose to pack things that allowed him to do exactly that.
As for the moon, I'm sure he had practical reasons for bringing it, too. Most likely he was anticipating needing a source of light once night had fallen, but there may have been an element of familiarity tied to it as well.
But I find myself reflecting on his lighting choice a little more philosophically than he might. Sometimes I think that Ben's mind, and his comprehension of things, is as mysterious as the universe itself. And yet, like a galaxy of stars, he brings a unique and gentle light to our lives. In his hands on the night that we drove to California, and in the center of his soul, Ben is holding the moon.
Ben (seven years old) immediately extracted his Nintendo DS from his backpack, and between that and the movies playing in the Suburban's tv/dvd machine, he was content for the first three hours of the drive. Then, as the dark of night crept over us, the car's interior was suddenly illuminated with a soft blue-white glow. My husband glanced at the seat behind me where Ben was sitting, chuckled, and whispered, "Oh--he's holding the moon."
From his backpack Ben had withdrawn the glowing moon that normally hangs on his wall. It's about 15-inches in diameter, concave, and filled with LED lights that illuminate intermittently to resemble the lunar phases.
Using the light of the moon, Ben reached into his backpack again and this time, in true Cat-in-the-Hat fashion, withdrew a full-sized dvd player and assorted cabling, and proceeded to connect his device to the car's existing dvd player--directing me as to the proper hookup of the cables into our vehicle's ceiling-mounted system while he handled the cabling in the back of his own machine. "Why?" I asked him? "Oh, in case the room I stay in doesn't have a dvd player," he said. "But why are we hooking this up to our car right now?" I continued. "Um...I just want to," he answered.
Still in a halo of artificial moonlight, Ben next withdrew a six-inch raw speaker woofer which he had recently extricated from an old karaoke machine. He explained that he needed this for the magnetic properties of the back plate. I asked him why, to which he replied, "Um...I don't know. I just do."
My daughter took Ben's backpack to investigate the remainder of its contents. All that remained were a laser-pen and two screwdrivers--a Phillips, and a flat head. "Why did you bring screwdrivers, Ben?" I asked? "Oh...just in case," he replied. A worried curiosity washed over me: Just in case what?
Turns out, those screwdrivers came in handy over the next week as Ben deftly removed all the hat hooks from his cousin's bedroom wall, disassembled a spin-art toy in order to examine the interior spinning mechanisms, and made an internal repair to one of his cousin's light-up vehicles. None of these things were done with permission or supervision, but none surprised us. Ben's favorite Christmas present last year was a carton of used, broken appliances that I picked up from the local thrift store, along with a new bag of tools. And whenever a replacement appliance or toy appears at our home, Ben's first request is that he be given the old one so that he can take it apart and examine the internal mechanisms. His room is littered with little screws, wires, cables, plastic and metal components of varying shapes and sizes...Sometimes I feel like a street performer who gingerly picks her way barefoot over a path of broken glass as I try to get to Ben's bed at night to tuck him in.
As I've reflected on Ben's choice of "good activities" for the trip, it occurs to me that he chose exactly the right things for himself--he brought the tools and supplies that helped him feel like he was in a comfortable, familiar environment. He doesn't love coloring or reading. He loves building and wiring, and figuring out how the world around him works. So he chose to pack things that allowed him to do exactly that.
As for the moon, I'm sure he had practical reasons for bringing it, too. Most likely he was anticipating needing a source of light once night had fallen, but there may have been an element of familiarity tied to it as well.
But I find myself reflecting on his lighting choice a little more philosophically than he might. Sometimes I think that Ben's mind, and his comprehension of things, is as mysterious as the universe itself. And yet, like a galaxy of stars, he brings a unique and gentle light to our lives. In his hands on the night that we drove to California, and in the center of his soul, Ben is holding the moon.
Thursday, November 11, 2010
Crying over Spilt Milk
I really blew it tonight.
I thought that some cookies and milk before bed sounded like a nice snack for the kids, so I baked up a batch of chocolate chunk cookies and poured cold milk into paper cups for each of my four children. As I distributed treats to the older kids, Ben retrieved a giant tumbler from the cupboard and poured himself some milk--somewhere around two quarts of it. I knew Ben would not only not drink that much milk, but that he'd most likely spill it. So I took the cup from him, poured the contents back into the milk container, and then handed him a paper cup of milk as I had given to the other children.
And he lost it.
He slammed the cup to the ground, splattering milk all over the newly cleaned floor, cabinets, refrigerator, and range. He fired off a round of the most terrible yet nonsensical language you'd ever hear come from the mouth of a seven year old, and stomped upstairs where he proceeded to kick the walls, punch and abuse the long-ago-destroyed plantation shutters in his window, throw toys and books out of his closet and all over the freshly vacuumed bedroom and hallway floors, and once I finished mopping up the milk, I broke the cardinal rule of parenting an autistic child.
I lost it, too.
I yelled. He yelled back. I took him into a "basket hold" to prevent more damage to his room. He craned his head around and spit into my face. I held him tighter. He squirmed free and landed several punches and kicks on my arms and back. I threatened him with a cold shower. He screamed at the top of his lungs. I mustered all my emotional resources and left him in his room with a warning that if he didn't stop, I'd be back. He resumed his destruction of the walls and windows. I returned. And so it went for nearly 40 minutes.
I couldn't stay in the room with him because he continued to hurt me. I couldn't leave him in the room alone because he was literally destroying it.
All I could do was ask him, over and over, to use words. "Ben! Use words to tell me what you want! Just ask for what you want! PLEASE just tell me what you want--tell me in words!!"
At long last, when I had just begun to think that I really could not survive one more minute, he yelled, "Fine! Mom-will-you-PLEASE-get-me-some-milk?!" So, I did. As quickly and quietly as I could, I retrieved a paper cup of milk and a cookie, and brought them to him in his bed. I watched him in a haze of fatigue, heartache, and relief as he calmly dipped his cookie into his milk and consumed both with the gentle slurping sounds of contented childhood, as if nothing at all had interrupted a serene bedtime ritual. Three minutes later he was buried under his blankets, sound asleep.
For the past few weeks, I've caught myself watching internet video clips, t.v. shows, and movies about autistic children (The Temple Grandin Story is a particularly lovely movie, by the way, if you haven't seen it yet). Secretly, I've been hoping that the children in those clips and shows would not be anything like Ben. I've caught myself hoping that the language, coping skills, and behaviors of those other children would seem totally foreign to me. However, everything I've seen only reinforces to me that Ben is autistic, and my heart hurts.
So tonight I find myself sitting alone at the kitchen table, my arms and back aching from Ben's earlier blows, my hands still stinging from his fingernail scratches, and I can't seem to stop crying. I'm crying because I can't always understand him. I'm crying because I don't know how to "fix" him. I'm crying because I don't know how to reach him.
And tonight, when I trace the uproar of the evening back to its genesis, I'm crying over a paper cup of spilt milk.
I thought that some cookies and milk before bed sounded like a nice snack for the kids, so I baked up a batch of chocolate chunk cookies and poured cold milk into paper cups for each of my four children. As I distributed treats to the older kids, Ben retrieved a giant tumbler from the cupboard and poured himself some milk--somewhere around two quarts of it. I knew Ben would not only not drink that much milk, but that he'd most likely spill it. So I took the cup from him, poured the contents back into the milk container, and then handed him a paper cup of milk as I had given to the other children.
And he lost it.
He slammed the cup to the ground, splattering milk all over the newly cleaned floor, cabinets, refrigerator, and range. He fired off a round of the most terrible yet nonsensical language you'd ever hear come from the mouth of a seven year old, and stomped upstairs where he proceeded to kick the walls, punch and abuse the long-ago-destroyed plantation shutters in his window, throw toys and books out of his closet and all over the freshly vacuumed bedroom and hallway floors, and once I finished mopping up the milk, I broke the cardinal rule of parenting an autistic child.
I lost it, too.
I yelled. He yelled back. I took him into a "basket hold" to prevent more damage to his room. He craned his head around and spit into my face. I held him tighter. He squirmed free and landed several punches and kicks on my arms and back. I threatened him with a cold shower. He screamed at the top of his lungs. I mustered all my emotional resources and left him in his room with a warning that if he didn't stop, I'd be back. He resumed his destruction of the walls and windows. I returned. And so it went for nearly 40 minutes.
I couldn't stay in the room with him because he continued to hurt me. I couldn't leave him in the room alone because he was literally destroying it.
All I could do was ask him, over and over, to use words. "Ben! Use words to tell me what you want! Just ask for what you want! PLEASE just tell me what you want--tell me in words!!"
At long last, when I had just begun to think that I really could not survive one more minute, he yelled, "Fine! Mom-will-you-PLEASE-get-me-some-milk?!" So, I did. As quickly and quietly as I could, I retrieved a paper cup of milk and a cookie, and brought them to him in his bed. I watched him in a haze of fatigue, heartache, and relief as he calmly dipped his cookie into his milk and consumed both with the gentle slurping sounds of contented childhood, as if nothing at all had interrupted a serene bedtime ritual. Three minutes later he was buried under his blankets, sound asleep.
For the past few weeks, I've caught myself watching internet video clips, t.v. shows, and movies about autistic children (The Temple Grandin Story is a particularly lovely movie, by the way, if you haven't seen it yet). Secretly, I've been hoping that the children in those clips and shows would not be anything like Ben. I've caught myself hoping that the language, coping skills, and behaviors of those other children would seem totally foreign to me. However, everything I've seen only reinforces to me that Ben is autistic, and my heart hurts.
So tonight I find myself sitting alone at the kitchen table, my arms and back aching from Ben's earlier blows, my hands still stinging from his fingernail scratches, and I can't seem to stop crying. I'm crying because I can't always understand him. I'm crying because I don't know how to "fix" him. I'm crying because I don't know how to reach him.
And tonight, when I trace the uproar of the evening back to its genesis, I'm crying over a paper cup of spilt milk.
Saturday, November 6, 2010
The Tilted House
Last week, Ben came into my room and asked, "Mom, did you ever recognize that our house is tilted?" And then, with a flourish of hand motions, and speaking at a pace slightly faster than presto, he began to hypothesize that it's only tilted a little bit, that way (toward the backyard), but it's probably because the house is built on a hill and that's why it's tilted but just a little bit--did I ever recognize that it was tilted?
I had two reactions to Ben's announcement. First, I felt certain that if I were to drop a plumb line and hold up a contractor's level, I'd certainly confirm that the house is, indeed, tilted a little bit toward the backyard. That would explain why the door frames leading out to our back porch are cracked all the way around, and why the doors stick. Ben's mind works mechanically and geometrically--he sees shapes, angles, and connections differently from how most of us see them. If he says the house is tilted, then it most likely is.
My second thought was that the house is tilted, too, in ways that Ben never recognized, either. That is, our house is tilted toward him.
Not too long ago, as we drove home from church, my husband, children, and I chatted casually but loudly about things we had heard and learned during the meetings. Suddenly Ben said, "Mom--Mom! My teacher...." and the car fell into absolute silence while Ben shared his experience. When he finished, and after I issued the standard, "Cool, Ben..." in response to his statement, my daughter said, "Isn't it funny how we all just get quiet when Ben wants to talk, so that he doesn't have to keep starting over and over?" And I realized that she was right.
An old stock broker commercial used the slogan, "When E.F. Hutton talks, people listen." The same slogan could be applied to our house: When Ben talks, people listen. However, unlike the hushed reverence that E.F. Hutton commanded, Ben gets our undivided attention because if he doesn't, the house doesn't just tilt anymore--it begins to crumble. I've written previously about Ben's struggles to complete a thought without starting the sentence over half a dozen times. If he gets interrupted at all while he's trying to speak a sentence, he has to start over, and each time that happens he becomes a little more frustrated until finally he loses track of his thought altogether and descends into a flurry of shouting, spitting, hitting, and throwing objects. By then we've reached a point of no return--and everyone in this house has learned that it's much, much better just to make sure Ben can speak without interference of any kind.
The house tilts again toward Ben whenever he gets upset. Because "upset" for Ben doesn't look anything like "upset" for me, or Chris, or the other kids, or anyone else I know, really. "Upset" for Ben looks like a tornado in the middle of a hurricane during an earthquake. If he forgets what he wanted to say, or if he feels like he has been treated unfairly, or if he can't beat a level on his computer or Nintendo DS game, Ben screams--sometimes obscenities--, punches and kicks people or objects, upends furniture, tears books and papers, and throws anything within reach...and I do mean, anything: dishes, tools, toys, cats, etc.
And what do we do? We take cover, usually. If I can get him into his room, he'll spend several minutes throwing heavy objects at his door, but on the best days he'll eventually climb into his bed, pull the blankets and pillow over his head, and just stay there for up to an hour until he feels back in control of himself. The quieter and darker, the better. I have to resist the urge to go into the room with him to try to talk it out--that never works, and only stirs up more agitation. He just needs quiet.
The other solution when he's raging is to coax him into the shower, where he finds sanctuary in the solitude of the location and comfort in the regular patter-patter-patter of the warm water over his body. He will spend hours in the shower--long after the water has gone cold, actually--creating machines and contraptions out of his collection of shower toys that grows bigger with each new shower. Sometimes we enter our shower to find it six inches deep with buckets, dump trucks, cups, toy cars, plastic tools, balls, bowls, and various other toys and receptacles that Ben has been using as part of his creative--and soothing--process.
A couple times, I've gone in to retrieve him from the shower to find the water cold and Ben's body bluish, and I've said, "Oh, Ben--why didn't you get out? You are so cold!" He just responds, "I'm not cold. I don't feel cold. Do I have to get out?" Fortunately, he rarely resists a warm, fluffy towel in those moments, and most importantly, the rage that propelled him into the shower in the first place has long since passed.
Yes--the house is tilted. Physically, probably. Emotionally, definitely. We tilt toward Ben, when he talks, when he's angry, and when he's doing well, too...just to make sure he stays that way. After all, a tilted house is much better than one that's falling over entirely.
I had two reactions to Ben's announcement. First, I felt certain that if I were to drop a plumb line and hold up a contractor's level, I'd certainly confirm that the house is, indeed, tilted a little bit toward the backyard. That would explain why the door frames leading out to our back porch are cracked all the way around, and why the doors stick. Ben's mind works mechanically and geometrically--he sees shapes, angles, and connections differently from how most of us see them. If he says the house is tilted, then it most likely is.
My second thought was that the house is tilted, too, in ways that Ben never recognized, either. That is, our house is tilted toward him.
Not too long ago, as we drove home from church, my husband, children, and I chatted casually but loudly about things we had heard and learned during the meetings. Suddenly Ben said, "Mom--Mom! My teacher...." and the car fell into absolute silence while Ben shared his experience. When he finished, and after I issued the standard, "Cool, Ben..." in response to his statement, my daughter said, "Isn't it funny how we all just get quiet when Ben wants to talk, so that he doesn't have to keep starting over and over?" And I realized that she was right.
An old stock broker commercial used the slogan, "When E.F. Hutton talks, people listen." The same slogan could be applied to our house: When Ben talks, people listen. However, unlike the hushed reverence that E.F. Hutton commanded, Ben gets our undivided attention because if he doesn't, the house doesn't just tilt anymore--it begins to crumble. I've written previously about Ben's struggles to complete a thought without starting the sentence over half a dozen times. If he gets interrupted at all while he's trying to speak a sentence, he has to start over, and each time that happens he becomes a little more frustrated until finally he loses track of his thought altogether and descends into a flurry of shouting, spitting, hitting, and throwing objects. By then we've reached a point of no return--and everyone in this house has learned that it's much, much better just to make sure Ben can speak without interference of any kind.
The house tilts again toward Ben whenever he gets upset. Because "upset" for Ben doesn't look anything like "upset" for me, or Chris, or the other kids, or anyone else I know, really. "Upset" for Ben looks like a tornado in the middle of a hurricane during an earthquake. If he forgets what he wanted to say, or if he feels like he has been treated unfairly, or if he can't beat a level on his computer or Nintendo DS game, Ben screams--sometimes obscenities--, punches and kicks people or objects, upends furniture, tears books and papers, and throws anything within reach...and I do mean, anything: dishes, tools, toys, cats, etc.
And what do we do? We take cover, usually. If I can get him into his room, he'll spend several minutes throwing heavy objects at his door, but on the best days he'll eventually climb into his bed, pull the blankets and pillow over his head, and just stay there for up to an hour until he feels back in control of himself. The quieter and darker, the better. I have to resist the urge to go into the room with him to try to talk it out--that never works, and only stirs up more agitation. He just needs quiet.
The other solution when he's raging is to coax him into the shower, where he finds sanctuary in the solitude of the location and comfort in the regular patter-patter-patter of the warm water over his body. He will spend hours in the shower--long after the water has gone cold, actually--creating machines and contraptions out of his collection of shower toys that grows bigger with each new shower. Sometimes we enter our shower to find it six inches deep with buckets, dump trucks, cups, toy cars, plastic tools, balls, bowls, and various other toys and receptacles that Ben has been using as part of his creative--and soothing--process.
A couple times, I've gone in to retrieve him from the shower to find the water cold and Ben's body bluish, and I've said, "Oh, Ben--why didn't you get out? You are so cold!" He just responds, "I'm not cold. I don't feel cold. Do I have to get out?" Fortunately, he rarely resists a warm, fluffy towel in those moments, and most importantly, the rage that propelled him into the shower in the first place has long since passed.
Yes--the house is tilted. Physically, probably. Emotionally, definitely. We tilt toward Ben, when he talks, when he's angry, and when he's doing well, too...just to make sure he stays that way. After all, a tilted house is much better than one that's falling over entirely.
Sunday, September 12, 2010
The Club of Boys Who Are Awesome
Second grade is officially underway, and so far, so good. I'm skeptically optimistic that this might shape up to be a pretty good year for Ben. How's that for motherly thinking?
Before the year began, I sat down with Ben's new teacher and described some of my concerns for the year--things that I thought we'd better get a jump on before Ben's behavior spiraled out of control. I suggested that Ben continue his routine of spending one recess outside, and one recess working puzzles in the office so that he could emotionally "reset" for the afternoon. I warned that Ben might need a special spot on the rug where he would be away from the kids and out of the general noise and touching that goes on in the heart of the rug. I noted that Ben struggles with spelling and would probably need some special accommodations if he was going to succeed in that particular academic discipline.
And I'm wondering if Ben's teacher thinks I'm crazy now, because Ben has been the poster child for well-behaved students this year (at least, that is what I'm seeing on his end-of-week report cards, and that's what he's reporting when I pick him up after school). Here's a typical after-school conversation:
Me: How was school today, Ben?
Ben: Um...good.
Me: Did you have any problems?
Ben: Um...I don't fink I did.
Me: Good! Did you play outside today?
Ben: Um...yes. I did play outside.
Me: Did you play with any kids?
Ben: Well, I fink I did. At one recess I did.
But my favorite conversation of the year continued when I asked him what he did during recess. I expected the same answer I've gotten since Kindergarten ("I don't really remember. I don't know."), but I nearly cried for joy when one day he said, "Um, well, I played soccer."
Now, mothers of normally social children won't think much of this response. Why wouldn't a child play soccer at recess? But Ben has never played a social sport in his life (not willingly, anyway--and I hardly think the things he did on the t-ball field count as "playing a social sport"). He has never had much interest in playing with other kids at any time. So when he announced that he had played soccer "on the field with the big kids" one afternoon, I couldn't have been more surprised if he had announced that he had built a particle accelerator and successfully split an atom. Frankly, the atom-splitting seems more likely.
But it gets better. Because when I pushed him to tell me about playing soccer on the field with the big kids, he announced in his characteristically nonchalant manner, "Oh, we all did. Because I'm in the Club of Boys Who Are Awesome, and Logan is in our club and he wanted to play soccer so we all played soccer." I don't know Logan, but I hope Santa Clause visits him weekly and showers gifts and glory upon him regularly. Because Logan is also in the Club of Boys Who Are Awesome. He may be the only other one in the club, of course--I don't know, because Ben can't say who else is in the club, or how he came to be in the club, or any other of a number of questions I tried to pepper him with upon hearing this unexpected news, but frankly, I don't care. Ben feels like he belongs to a group of children. And this is a miracle of unexpected proportion.
Ben's new interest in some social connections has raised another interesting issue, though, and that is Ben's inability to remain clothed for an entire day. I haven't officially timed him, but I'm pretty sure that it takes him somewhere around 6.7 seconds to come in the door after school, and immediately strip down to his underwear. Growing weary of the "tighty-whitey" look, we recently bought him some boxer briefs that at least marginally create some semblance of decency, but even when he's wearing briefs, Ben can't wait to get out of his clothes. I've asked him why he insists on introducing near-nudism to our home, and he always says something about how his clothes make him hot, or how the tag itches his neck (even though I've removed every single tag from every single shirt), or how the collars of his shirts (even t-shirts) feel uncomfortable touching his neck. The bottom line is that he can't stand the feeling of the fabric against his skin, and he just feels better without any clothes at all.
Some of his anxieties at school are being taken out on his shirts this year (which is infinitely better than taking them out on his peers). Every day, he comes home from school having chewed through the collar of his shirt. His t-shirts are soaking wet from neck to mid-chest; they are twisted and often riddled with holes and rips. On his end-of-week report this week, his teacher noted that she has been working on the chewing with him during school, and sometimes she can get him all the way until about 2:00 before he can't hold off anymore. I've done some research on shirt-chewing, because I know that it's not unique to autistic kids. However, most children apparently outgrow the habit by age 4 or 5, and those who don't often need the help of an occupational therapist to overcome. In autistic kids, chewing is a fairly common way to express anxiety or stress, so it makes sense that Ben is chewing his clothes in the afternoon every day--I suspect that he just reaches a point where he starts to get overloaded, and chewing is one outlet for that. I've read that I can get special necklaces that are made for chewing, but I don't know if Ben would like that or not. If the behavior continues, I'll have to check into them.
I have noticed lately, though, that Ben has begun to understand that certain social situations demand clothing. For example, when he hears that the babysitter is coming over, he occasionally will slip upstairs and reemerge wearing clothes. He did the same thing when he heard that his grandpa was coming over one afternoon. However, as we urged him to get dressed so that we could go over to his aunt's house one day, he demanded, "Why can't I stay in my underwear? Everybody knows that this is how I like to be comfortable!"
And one morning last week, as I was trying to get him dressed before school, he announced that he did not want to wear pants to school. Playing on his new social connections, I asked, "Ben, what would the Club of Boys Who Are Awesome say if you showed up to school wearing no pants?" He thought for only a second before responding, "Oh, they would say, 'You're fired!'" And then he put on pants and went to school.
Wonder of wonders, miracle of miracles.
Before the year began, I sat down with Ben's new teacher and described some of my concerns for the year--things that I thought we'd better get a jump on before Ben's behavior spiraled out of control. I suggested that Ben continue his routine of spending one recess outside, and one recess working puzzles in the office so that he could emotionally "reset" for the afternoon. I warned that Ben might need a special spot on the rug where he would be away from the kids and out of the general noise and touching that goes on in the heart of the rug. I noted that Ben struggles with spelling and would probably need some special accommodations if he was going to succeed in that particular academic discipline.
And I'm wondering if Ben's teacher thinks I'm crazy now, because Ben has been the poster child for well-behaved students this year (at least, that is what I'm seeing on his end-of-week report cards, and that's what he's reporting when I pick him up after school). Here's a typical after-school conversation:
Me: How was school today, Ben?
Ben: Um...good.
Me: Did you have any problems?
Ben: Um...I don't fink I did.
Me: Good! Did you play outside today?
Ben: Um...yes. I did play outside.
Me: Did you play with any kids?
Ben: Well, I fink I did. At one recess I did.
But my favorite conversation of the year continued when I asked him what he did during recess. I expected the same answer I've gotten since Kindergarten ("I don't really remember. I don't know."), but I nearly cried for joy when one day he said, "Um, well, I played soccer."
Now, mothers of normally social children won't think much of this response. Why wouldn't a child play soccer at recess? But Ben has never played a social sport in his life (not willingly, anyway--and I hardly think the things he did on the t-ball field count as "playing a social sport"). He has never had much interest in playing with other kids at any time. So when he announced that he had played soccer "on the field with the big kids" one afternoon, I couldn't have been more surprised if he had announced that he had built a particle accelerator and successfully split an atom. Frankly, the atom-splitting seems more likely.
But it gets better. Because when I pushed him to tell me about playing soccer on the field with the big kids, he announced in his characteristically nonchalant manner, "Oh, we all did. Because I'm in the Club of Boys Who Are Awesome, and Logan is in our club and he wanted to play soccer so we all played soccer." I don't know Logan, but I hope Santa Clause visits him weekly and showers gifts and glory upon him regularly. Because Logan is also in the Club of Boys Who Are Awesome. He may be the only other one in the club, of course--I don't know, because Ben can't say who else is in the club, or how he came to be in the club, or any other of a number of questions I tried to pepper him with upon hearing this unexpected news, but frankly, I don't care. Ben feels like he belongs to a group of children. And this is a miracle of unexpected proportion.
Ben's new interest in some social connections has raised another interesting issue, though, and that is Ben's inability to remain clothed for an entire day. I haven't officially timed him, but I'm pretty sure that it takes him somewhere around 6.7 seconds to come in the door after school, and immediately strip down to his underwear. Growing weary of the "tighty-whitey" look, we recently bought him some boxer briefs that at least marginally create some semblance of decency, but even when he's wearing briefs, Ben can't wait to get out of his clothes. I've asked him why he insists on introducing near-nudism to our home, and he always says something about how his clothes make him hot, or how the tag itches his neck (even though I've removed every single tag from every single shirt), or how the collars of his shirts (even t-shirts) feel uncomfortable touching his neck. The bottom line is that he can't stand the feeling of the fabric against his skin, and he just feels better without any clothes at all.
Some of his anxieties at school are being taken out on his shirts this year (which is infinitely better than taking them out on his peers). Every day, he comes home from school having chewed through the collar of his shirt. His t-shirts are soaking wet from neck to mid-chest; they are twisted and often riddled with holes and rips. On his end-of-week report this week, his teacher noted that she has been working on the chewing with him during school, and sometimes she can get him all the way until about 2:00 before he can't hold off anymore. I've done some research on shirt-chewing, because I know that it's not unique to autistic kids. However, most children apparently outgrow the habit by age 4 or 5, and those who don't often need the help of an occupational therapist to overcome. In autistic kids, chewing is a fairly common way to express anxiety or stress, so it makes sense that Ben is chewing his clothes in the afternoon every day--I suspect that he just reaches a point where he starts to get overloaded, and chewing is one outlet for that. I've read that I can get special necklaces that are made for chewing, but I don't know if Ben would like that or not. If the behavior continues, I'll have to check into them.
I have noticed lately, though, that Ben has begun to understand that certain social situations demand clothing. For example, when he hears that the babysitter is coming over, he occasionally will slip upstairs and reemerge wearing clothes. He did the same thing when he heard that his grandpa was coming over one afternoon. However, as we urged him to get dressed so that we could go over to his aunt's house one day, he demanded, "Why can't I stay in my underwear? Everybody knows that this is how I like to be comfortable!"
And one morning last week, as I was trying to get him dressed before school, he announced that he did not want to wear pants to school. Playing on his new social connections, I asked, "Ben, what would the Club of Boys Who Are Awesome say if you showed up to school wearing no pants?" He thought for only a second before responding, "Oh, they would say, 'You're fired!'" And then he put on pants and went to school.
Wonder of wonders, miracle of miracles.
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