Early attempts at teaching the boys to meditate have only had limited success. They have managed to sit for no more than a minute or two quietly and I haven't gotten the sense that they've exactly been focusing on the breath during that two minutes. And while forcing someone to meditate sounds like an oxymoron I think in this case a little coercion is required. The truth is without some pressure the boys won't participate in much. Merely suggesting an activity with a cheerful voice doesn't cut it for them like it would for a lot of kids. A little fun plus a dose of trickery is required.
Recently I got a Buddha Board as a gift. A Buddha board consists of special paper that allows you to write with water using a thin paint brush and watch the writing slowly disappear as the water dries. The origin of the Buddha board, or Zen board, was to enable one to practice calligraphy without wasting tons of valuable paper. However, watching your drawing slowly disappear also gives you a simple visual reminder of the concept of impermance. Nothing will last forever. It is a pleasant little mindfulness activity.
I thought this might be somewhat helpful to the boys who seem naturally prone to being trapped by fatalistic thinking. Everything is black and white in their world and when something goes bad they tend to think it will be bad forever. So, I tried to show them how they could write a word like "angry" or "worried" on the board and then slowly watch it disappear. A short while later, after some battling between the boys, I saw Daniel using the board. Excited that my lesson was paying off I leaned over his shoulder to see what he was writing. "Kenny" is what he had written. When questioned why he informed me that "he hoped it would make Kenny disappear."
Not quite the message I was going for.
Never one to give up I decided to find a second use for the Buddha Board. I decided I could perhaps employ the board as a means of visual meditation and that perhaps if the boys had something visual to focus on they might fair a bit better. I sat the boys down (a challenge in itself some days) and wrote the word "Quiet" on the board and instructed them to sit silently while they watched the word disappear. Once the word was gone, they could yell all they wanted.
This effort was moderately sucessful. I managed 4 1/2 minutes of still sitting in relative quiet. The boys still seem to be under the impression that whispering and "not talking" are the same thing so there was a fair amount of commentary as to which letter disappeared first, etc. but at least it was a start. For certain, there were some true moments of single-pointed attention on the words and a little single-pointed attention is something they definately need to work on.
Another small step perhaps towards building the skills of mindfulness.
21 February 2012
08 February 2012
Dharma Lessons from Autism: Impermanence
Central to Buddhist teachings is the notion of impermanence, the idea that nothing is fixed and permanent. The knowledge that things are constantly changing, and will forever be so permeates many aspects of Buddhism. It is central to the first noble truth, that all life contains suffering. We will change. We will get old. We will get sick. We will lose the things we try to cling to. Our suffering is caused by our inability to accept the notion of impermanence.
Further, this notion of constant change undercuts the dualistic view of ourselves as other from the rest of world. When we think back to ourselves as an infant it is hard to define what is the same. The material stuff of our physical bodies, the image we cling too, has changed-over countless times. Nothing physical remains. The analogy is often to a river and it is said that you can never step into the same river twice. We are like the river, always changing. We are not the same person we were 10 years ago, 10 days ago, or even 10 seconds ago. So, Buddhists would have us ponder, what are we really? And how are we separate from the air we breathe in and the food we consume. At what point does it become us? The answer is that it always was.
This last thought leads to the belief that what counts and all that really exists is "now." And much of the Buddhist meditation practice is about learning to tune into now and becoming awake to the world that exists as opposed to the thoughts and worries that are fabrications, fleeting ones at that, of our mind. Nothing teaches the lesson that things are changing second to second than parenting a child with an autism spectrum disorder.
Of course, on the surface this might not seem the case. It has been the long-standing and official view that autism is a life-long condition and that it is incurable. It seems a strangely authoritative and final pronouncement to make given that the mainstream medical community knows nothing about the biological mechanism or origin of the disease. Nonetheless, that is the first thing parents of newly diagnosed children are told. However, every parent on the ground could tell a different story and new advancements in neurobiology are rapidly overturning the notion that you can't teach an old brain new tricks. Many of these new discoveries are coming from the study of mindfulness and show that the brain is, in fact, able to rewire itself through meditative practice resulting in a clinically observable change in the way people respond to and view different situations.
Often dedicating tremendous hours to the simplest of developmental milestones, parents of children with autism develop a keen eye for any sign of progress. And when you are looking that closely for change you notice that it is constant. Some changes are monumental. I remember vividly that first time Danny's head turned in response to his name. The first time Kenny truly looked me in the eye. Others are a little harder to appreciate but we appreciate them all the same: the first time their play went "off script" and deviated from the verbatim recitation of Dr. Seuss lines, the first time they lied, the first time that they used slang (the glorious nonliterary word ain't) they had picked up from a classmate and not a book.
The truth is that our children are changing every day. That change may look smaller than most and it may take a helluva lot more effort. However, by being keenly aware of this change we have the opportunity to enjoy the specialty and wonder of the change in a way that others may not fully appreciate.
We are also all too well aware of the flip side of impermanence. Good things won't last either. The desire to cling to them will only lead to suffering. Skills fought for, developed and taken for granted at one school can be left behind with a change to new school. The calmest moment around the house can turn into an explosion of anxiety, anger and non-compliance in an unpredictable instant. The best outing to a park or a zoo can end in disaster.
For awhile this was perhaps the most challenging aspect of parenting my boys. I felt and lived as though I was always one second away from disaster. I felt as though a black cloud was constantly looming over my head ready to throw down bolts of lightning the second I relaxed and dared to enjoy something.
My Buddhist practice has taught to let go of my desire to cling to the good moments hoping to preserve them as long as possible, but instead to truly enjoy them in that moment. Truth be told, even on the worst days there are moments to savor and enjoy. Likewise it has taught me not to wallow in despair following the sometimes epic meltdowns. There may be things to learn from a meltdown that are worth remembering, but it is important to know that the meltdown doesn't doom the entire day. Each moment is new. And we've all changed since the last and will change again before the next.
Further, this notion of constant change undercuts the dualistic view of ourselves as other from the rest of world. When we think back to ourselves as an infant it is hard to define what is the same. The material stuff of our physical bodies, the image we cling too, has changed-over countless times. Nothing physical remains. The analogy is often to a river and it is said that you can never step into the same river twice. We are like the river, always changing. We are not the same person we were 10 years ago, 10 days ago, or even 10 seconds ago. So, Buddhists would have us ponder, what are we really? And how are we separate from the air we breathe in and the food we consume. At what point does it become us? The answer is that it always was.
This last thought leads to the belief that what counts and all that really exists is "now." And much of the Buddhist meditation practice is about learning to tune into now and becoming awake to the world that exists as opposed to the thoughts and worries that are fabrications, fleeting ones at that, of our mind. Nothing teaches the lesson that things are changing second to second than parenting a child with an autism spectrum disorder.
Of course, on the surface this might not seem the case. It has been the long-standing and official view that autism is a life-long condition and that it is incurable. It seems a strangely authoritative and final pronouncement to make given that the mainstream medical community knows nothing about the biological mechanism or origin of the disease. Nonetheless, that is the first thing parents of newly diagnosed children are told. However, every parent on the ground could tell a different story and new advancements in neurobiology are rapidly overturning the notion that you can't teach an old brain new tricks. Many of these new discoveries are coming from the study of mindfulness and show that the brain is, in fact, able to rewire itself through meditative practice resulting in a clinically observable change in the way people respond to and view different situations.
Often dedicating tremendous hours to the simplest of developmental milestones, parents of children with autism develop a keen eye for any sign of progress. And when you are looking that closely for change you notice that it is constant. Some changes are monumental. I remember vividly that first time Danny's head turned in response to his name. The first time Kenny truly looked me in the eye. Others are a little harder to appreciate but we appreciate them all the same: the first time their play went "off script" and deviated from the verbatim recitation of Dr. Seuss lines, the first time they lied, the first time that they used slang (the glorious nonliterary word ain't) they had picked up from a classmate and not a book.
The truth is that our children are changing every day. That change may look smaller than most and it may take a helluva lot more effort. However, by being keenly aware of this change we have the opportunity to enjoy the specialty and wonder of the change in a way that others may not fully appreciate.
We are also all too well aware of the flip side of impermanence. Good things won't last either. The desire to cling to them will only lead to suffering. Skills fought for, developed and taken for granted at one school can be left behind with a change to new school. The calmest moment around the house can turn into an explosion of anxiety, anger and non-compliance in an unpredictable instant. The best outing to a park or a zoo can end in disaster.
For awhile this was perhaps the most challenging aspect of parenting my boys. I felt and lived as though I was always one second away from disaster. I felt as though a black cloud was constantly looming over my head ready to throw down bolts of lightning the second I relaxed and dared to enjoy something.
My Buddhist practice has taught to let go of my desire to cling to the good moments hoping to preserve them as long as possible, but instead to truly enjoy them in that moment. Truth be told, even on the worst days there are moments to savor and enjoy. Likewise it has taught me not to wallow in despair following the sometimes epic meltdowns. There may be things to learn from a meltdown that are worth remembering, but it is important to know that the meltdown doesn't doom the entire day. Each moment is new. And we've all changed since the last and will change again before the next.
06 February 2012
Idiot Compassion and Muting the National Anthem
Sometimes compassion isn't as straightforward as it would seem. To describe this phenomenon Trungpa Rinpoche coined the term "idiot compassion." Idiot compassion refers to times when we fool ourselves into thinking that we are acting compassionately, when in fact we are simply giving in or giving up. Obvious and simple to understand examples of this idea are the friend who gives more and more money to the heroin addict, the spouse who can't bear to leave an abusive partner or the parent who enables their child. However, it often takes a great deal of wisdom to decipher the difference between true compassion and idiot compassion.
In raising a child with autism perhaps the difference between true compassion and idiot compassion is even tougher to determine. On what seems to be a daily basis you are forced to face one nagging question: Is it best to make the situation easier for them given their disability, or should I push and challenge them?
No doubt every parent faces this question from time to time but with autism it is closer to minute to minute given all the fearful situations presented to a child as a result of communication difficulties, a general inability to understand social situations and fears created by truly disrupted sensory integration systems.
In short, my boys can be like ticking time bombs. After seven years I've gotten a pretty good sense of what is going to set them off. Furthermore, I can even avoid the landmines in a relatively subconscious and natural way. Without feeling like I'm walking on egg-shells or enabling, I can set the day up in a certain way, demand certain things but not others and phrase things in a way that will avoid any potential meltdowns. Sure, sometimes a meltdown will strike out of nowhere and other times I'll find myself bracing for an explosion that never comes. But, as a general rule, I can walk the line if I choose.
This of course means that when explosions and meltdowns do happen, at least when they happen under my watch, I feel that I bear some responsibility for them. There is always something I could have done differently. Often these actions could have been easily justified. I could have removed one brother from another and engaged him thus preventing the fight that anyone could see coming, despite the verbal warning I issued. I could have brought his clothes downstairs rather than making him go upstairs to get dressed. I could have served something for dinner I knew they would like. I could not care if they use a fork. I could look the other way. I could download the app. I could have not said the phrase "but you did lose." I could have called the library to make sure it was open before arriving and finding it closed. I could have bribed him with a snack to leave the bookstore without a book.
These are examples that probably every parent faces. When I was growing up, the popular phrase describing a parent doing the right thing for their child even though it may have seemed difficult was “tough love.” And it is easy to give the advice that you can never give in and should practice tough love. But in the case of children with autism, the meltdowns are so catastrophic as to be downright dangerous. Some enabling is required to safely leave the house. And sometimes you just desperately need for something positive to happen in their lives, and yours. Bombarded by sensory insults that they cannot always comprehend, life is very difficult for them. They are simply physically and emotionally unable to meet some expected behaviors on a regular basis. If you don’t acknowledge that to some degree you’ll never leave the house. Life will be misery and you will get nowhere.
So, the question becomes when and where to draw the line. At what point are you preventing your child from any enjoyment in life and simply beating their spirit into the dirt over things outside of their physical and mental control versus the point in which you are failing to teach them the skills they need to function in the real world? It is a difficult question.
Some decisions are fairly easy. Travel with an extra pairs of sunglasses to deal with severe light-sensitivity- yes. Let them walk barefoot outside in the winter because they don't like the feel of socks- no.
Others aren't so easy. Like, in our case, the Muppet Show and the National Anthem.
It all started innocently enough. When Danny was around two years old we took him to a little bluegrass music festival near our house. It was free, it was a nice day and it seemed like a good idea. Danny wasn't having it. He covered his ears and howled. This was surprising because he seemed to generally love all kinds of music. Music was one of the few things that could calm him. It seemed like maybe he was disoriented by the fact that the music wasn't coming from a predictable location. To remedy this I pushed his stroller to the front of the sparsely attended event so he could see the performers. This made the problem worse and the performers, amateurs, seemed rather scared by the effect their performance was having. Even far away he would not remove his hands from his ears. Even bribing him with his favorite snack failed to work. Watching him try and get to his goldfish with his elbows while keeping his hands clasped over his ears, we knew it was time to depart.
We made light of it at the time. We made jokes about Danny hating bluegrass. It didn't seem like a big deal. It certainly didn't seem like something that would be dictating our life five years later. Even now stating the problem out loud it doesn't sound like a big deal. Danny is afraid of live music. There I said it. Doesn't sound like much, right? But it turns out live music is everywhere if you are really afraid of it. And if what you are really afraid of is clapping, then you’ve got a bigger problem.
As time progressed the problem we assumed he’d eventually outgrow without intervention only grew larger. Danny loved music but soon we were unable to listen to certain CDs. Lacking the communication abilities to tell us why, for a long time we struggled to figure out this bizarre behavior. We'd put in certain CDs and Danny would cover his ears for as long as the CD played becoming more and more agitated. Eventually we discovered that it was all CDs that contained a live song. Even a live version of a song on CD was intolerable to him and not only that but it made the whole CD, even the regular songs, intolerable to him. So, in what seemed like compassionate behavior we avoided them. The child had enough difficulties without us playing music that upset him.
Likewise, events that might contain clapping were beginning to prove just as dramatic. Sporting events became out of the question, at least after the first score. School assemblies--don't even think about it. Gradually, when you would think it would get better, it slowly got worse. Movies were soon out, despite his love of them.
But, to be honest, we had bigger problems. It didn't seem like a battle worth fighting. Thinking myself compassionate, I’d take Danny to a park while my wife took Kenny to a movie.
As Danny turned seven, a couple events highlighted how crippling this problem had become. One afternoon I took Danny ice-skating. He loved it. He was picking it up pretty well and having a blast. And towards the end a live song played over the loud-speaker. He covered his ears and he asked to leave. But, it turned out that the session was almost over anyway. It seemed like a minor event and he talked about nothing but how much fun he had. A few weeks later I tried to take him again (while his brother was at a movie) to capitalize on this newfound activity but he wasn’t having it. He wouldn’t go. He’d take any punishment to avoid going. Why? Because of the live music. Now here was a pretty clear example of the phobia really interfering with his enjoyment of life (and mine). But it was just one example and there had been many before it.
Shortly after this, his fear required that he actually miss an entire day of school as his class took a fieldtrip to a nearby playhouse to see a performance. The school recognized that his fear of assemblies was so over the top and dramatic (up to and including running away) that they felt they could not risk taking him on a field trip. Now the phobia was interfering with his schooling.
Finally, I got a report from school that was the final straw. The music teacher had attempted to put on a video in school. It was a video Danny objected to for reasons perhaps no one will ever discover. And so he physically tried to stop her. And now not only was the phobia keeping Danny from fun and interfering with his schooling, it was getting him into big trouble.
It was finally clear to me (as it had been to his mom for a long time probably) that true compassion was not muting the national anthem or avoiding the movie theater. True compassion would be forcing him face his fears and his dislikes and conquer them. So, this past weekend we embarked on a mission to teach him that clapping on TV or the radio would not hurt him and he could learn to be in the same room with something on TV he doesn’t like and he would survive without screaming, running or covering his ears.
The method of choice was the Muppet Show. Danny had always had a profound obsession/fear of the Muppet Show. Of late it was leaning strongly towards the obsession side to the point where he could tell you what guest star had appeared in every episode based on his readings of the Muppet wiki website. But yet he would not watch the Muppet Show. He would not even enter a room in which the Muppet Show was playing. Eventually, we got him to watch some of the Muppet movies, which he loved, but the "live" audience of the Muppet Show was a deal breaker.
On Saturday, we made Danny sit through a full episode without covering his eyes or ears. He fought like hell for all twenty-six minutes. He screamed and cried and kicked and squirmed and I had to hold his hands down the whole time. It felt like the least compassionate thing I’ve ever done. And so we did again on Sunday. And this time he fought less and had to be held less and for moments he was able to watch, but he still cried and screamed throughout most of it. Then an hour later I discovered him watching the same episode on his own albeit with his hands over his ears. And then two hours later I discovered him watching without his ears covered.
It seemed like the operation was a bit of success. Then the Super Bowl arrived with that frequent reminder that when it comes to kids with autism, success doesn’t come all at once in leaps and bounds, but rather in very short and specific increments. Despite, his recent fascination with football and ESPN’s SportsCenter, Danny suddenly announced Sunday afternoon that he wasn’t watching the Super Bowl and requested that I tell him all about it when it was over. His announcement was so defiant in tone, especially in light of the morning “lesson” that we have to learn how to watch stuff we don’t like, we were left with no choice but to make him.
Eventually it came out that the reason for his announcement was that he didn’t want to watch the national anthem (live singing and clapping). He began crying and covering his ears a full hour before the game was set to start, even while in an adjacent room eating dinner. Eventually a compromise was negotiated. If he would sit and not run out of the room or cover his eyes, he could watch the national anthem with his headphones on. It may not seem like much, but his acceptance of this was actually a big deal and real progress. The headphones don’t block out all noise and he hasn’t agreed to this before. And he did it. And we all survived and he proceeded to enjoy the rest of the game until his bedtime (mercifully before the halftime show).
These glimmers of progress were apparently so stressful to him that his Monday journal entry at school consisted of one sentence, “It was the worst weekend ever!” Based on that entry I doubt the teacher suspected that we acted skillfully and compassionately over the weekend, but I hope and believe that we did. On Monday, thanks to YouTube, Danny and I again watched Kelly Clarkson’s rendition of the national anthem. And this time, for the first time ever, he sat still and watched without headphones and without covering his ears. And so, while I doubt we could go to an assembly or a hockey game tomorrow, I think we are one step closer to enjoying more of life.
At a minimum I’ve learned that compassion isn’t always what it seems and that sometimes to be truly compassionate takes both wisdom and surprisingly a hefty dose of courage.
In raising a child with autism perhaps the difference between true compassion and idiot compassion is even tougher to determine. On what seems to be a daily basis you are forced to face one nagging question: Is it best to make the situation easier for them given their disability, or should I push and challenge them?
No doubt every parent faces this question from time to time but with autism it is closer to minute to minute given all the fearful situations presented to a child as a result of communication difficulties, a general inability to understand social situations and fears created by truly disrupted sensory integration systems.
In short, my boys can be like ticking time bombs. After seven years I've gotten a pretty good sense of what is going to set them off. Furthermore, I can even avoid the landmines in a relatively subconscious and natural way. Without feeling like I'm walking on egg-shells or enabling, I can set the day up in a certain way, demand certain things but not others and phrase things in a way that will avoid any potential meltdowns. Sure, sometimes a meltdown will strike out of nowhere and other times I'll find myself bracing for an explosion that never comes. But, as a general rule, I can walk the line if I choose.
This of course means that when explosions and meltdowns do happen, at least when they happen under my watch, I feel that I bear some responsibility for them. There is always something I could have done differently. Often these actions could have been easily justified. I could have removed one brother from another and engaged him thus preventing the fight that anyone could see coming, despite the verbal warning I issued. I could have brought his clothes downstairs rather than making him go upstairs to get dressed. I could have served something for dinner I knew they would like. I could not care if they use a fork. I could look the other way. I could download the app. I could have not said the phrase "but you did lose." I could have called the library to make sure it was open before arriving and finding it closed. I could have bribed him with a snack to leave the bookstore without a book.
These are examples that probably every parent faces. When I was growing up, the popular phrase describing a parent doing the right thing for their child even though it may have seemed difficult was “tough love.” And it is easy to give the advice that you can never give in and should practice tough love. But in the case of children with autism, the meltdowns are so catastrophic as to be downright dangerous. Some enabling is required to safely leave the house. And sometimes you just desperately need for something positive to happen in their lives, and yours. Bombarded by sensory insults that they cannot always comprehend, life is very difficult for them. They are simply physically and emotionally unable to meet some expected behaviors on a regular basis. If you don’t acknowledge that to some degree you’ll never leave the house. Life will be misery and you will get nowhere.
So, the question becomes when and where to draw the line. At what point are you preventing your child from any enjoyment in life and simply beating their spirit into the dirt over things outside of their physical and mental control versus the point in which you are failing to teach them the skills they need to function in the real world? It is a difficult question.
Some decisions are fairly easy. Travel with an extra pairs of sunglasses to deal with severe light-sensitivity- yes. Let them walk barefoot outside in the winter because they don't like the feel of socks- no.
Others aren't so easy. Like, in our case, the Muppet Show and the National Anthem.
It all started innocently enough. When Danny was around two years old we took him to a little bluegrass music festival near our house. It was free, it was a nice day and it seemed like a good idea. Danny wasn't having it. He covered his ears and howled. This was surprising because he seemed to generally love all kinds of music. Music was one of the few things that could calm him. It seemed like maybe he was disoriented by the fact that the music wasn't coming from a predictable location. To remedy this I pushed his stroller to the front of the sparsely attended event so he could see the performers. This made the problem worse and the performers, amateurs, seemed rather scared by the effect their performance was having. Even far away he would not remove his hands from his ears. Even bribing him with his favorite snack failed to work. Watching him try and get to his goldfish with his elbows while keeping his hands clasped over his ears, we knew it was time to depart.
We made light of it at the time. We made jokes about Danny hating bluegrass. It didn't seem like a big deal. It certainly didn't seem like something that would be dictating our life five years later. Even now stating the problem out loud it doesn't sound like a big deal. Danny is afraid of live music. There I said it. Doesn't sound like much, right? But it turns out live music is everywhere if you are really afraid of it. And if what you are really afraid of is clapping, then you’ve got a bigger problem.
As time progressed the problem we assumed he’d eventually outgrow without intervention only grew larger. Danny loved music but soon we were unable to listen to certain CDs. Lacking the communication abilities to tell us why, for a long time we struggled to figure out this bizarre behavior. We'd put in certain CDs and Danny would cover his ears for as long as the CD played becoming more and more agitated. Eventually we discovered that it was all CDs that contained a live song. Even a live version of a song on CD was intolerable to him and not only that but it made the whole CD, even the regular songs, intolerable to him. So, in what seemed like compassionate behavior we avoided them. The child had enough difficulties without us playing music that upset him.
Likewise, events that might contain clapping were beginning to prove just as dramatic. Sporting events became out of the question, at least after the first score. School assemblies--don't even think about it. Gradually, when you would think it would get better, it slowly got worse. Movies were soon out, despite his love of them.
But, to be honest, we had bigger problems. It didn't seem like a battle worth fighting. Thinking myself compassionate, I’d take Danny to a park while my wife took Kenny to a movie.
As Danny turned seven, a couple events highlighted how crippling this problem had become. One afternoon I took Danny ice-skating. He loved it. He was picking it up pretty well and having a blast. And towards the end a live song played over the loud-speaker. He covered his ears and he asked to leave. But, it turned out that the session was almost over anyway. It seemed like a minor event and he talked about nothing but how much fun he had. A few weeks later I tried to take him again (while his brother was at a movie) to capitalize on this newfound activity but he wasn’t having it. He wouldn’t go. He’d take any punishment to avoid going. Why? Because of the live music. Now here was a pretty clear example of the phobia really interfering with his enjoyment of life (and mine). But it was just one example and there had been many before it.
Shortly after this, his fear required that he actually miss an entire day of school as his class took a fieldtrip to a nearby playhouse to see a performance. The school recognized that his fear of assemblies was so over the top and dramatic (up to and including running away) that they felt they could not risk taking him on a field trip. Now the phobia was interfering with his schooling.
Finally, I got a report from school that was the final straw. The music teacher had attempted to put on a video in school. It was a video Danny objected to for reasons perhaps no one will ever discover. And so he physically tried to stop her. And now not only was the phobia keeping Danny from fun and interfering with his schooling, it was getting him into big trouble.
It was finally clear to me (as it had been to his mom for a long time probably) that true compassion was not muting the national anthem or avoiding the movie theater. True compassion would be forcing him face his fears and his dislikes and conquer them. So, this past weekend we embarked on a mission to teach him that clapping on TV or the radio would not hurt him and he could learn to be in the same room with something on TV he doesn’t like and he would survive without screaming, running or covering his ears.
The method of choice was the Muppet Show. Danny had always had a profound obsession/fear of the Muppet Show. Of late it was leaning strongly towards the obsession side to the point where he could tell you what guest star had appeared in every episode based on his readings of the Muppet wiki website. But yet he would not watch the Muppet Show. He would not even enter a room in which the Muppet Show was playing. Eventually, we got him to watch some of the Muppet movies, which he loved, but the "live" audience of the Muppet Show was a deal breaker.
On Saturday, we made Danny sit through a full episode without covering his eyes or ears. He fought like hell for all twenty-six minutes. He screamed and cried and kicked and squirmed and I had to hold his hands down the whole time. It felt like the least compassionate thing I’ve ever done. And so we did again on Sunday. And this time he fought less and had to be held less and for moments he was able to watch, but he still cried and screamed throughout most of it. Then an hour later I discovered him watching the same episode on his own albeit with his hands over his ears. And then two hours later I discovered him watching without his ears covered.
It seemed like the operation was a bit of success. Then the Super Bowl arrived with that frequent reminder that when it comes to kids with autism, success doesn’t come all at once in leaps and bounds, but rather in very short and specific increments. Despite, his recent fascination with football and ESPN’s SportsCenter, Danny suddenly announced Sunday afternoon that he wasn’t watching the Super Bowl and requested that I tell him all about it when it was over. His announcement was so defiant in tone, especially in light of the morning “lesson” that we have to learn how to watch stuff we don’t like, we were left with no choice but to make him.
Eventually it came out that the reason for his announcement was that he didn’t want to watch the national anthem (live singing and clapping). He began crying and covering his ears a full hour before the game was set to start, even while in an adjacent room eating dinner. Eventually a compromise was negotiated. If he would sit and not run out of the room or cover his eyes, he could watch the national anthem with his headphones on. It may not seem like much, but his acceptance of this was actually a big deal and real progress. The headphones don’t block out all noise and he hasn’t agreed to this before. And he did it. And we all survived and he proceeded to enjoy the rest of the game until his bedtime (mercifully before the halftime show).
These glimmers of progress were apparently so stressful to him that his Monday journal entry at school consisted of one sentence, “It was the worst weekend ever!” Based on that entry I doubt the teacher suspected that we acted skillfully and compassionately over the weekend, but I hope and believe that we did. On Monday, thanks to YouTube, Danny and I again watched Kelly Clarkson’s rendition of the national anthem. And this time, for the first time ever, he sat still and watched without headphones and without covering his ears. And so, while I doubt we could go to an assembly or a hockey game tomorrow, I think we are one step closer to enjoying more of life.
At a minimum I’ve learned that compassion isn’t always what it seems and that sometimes to be truly compassionate takes both wisdom and surprisingly a hefty dose of courage.
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