I'm sure it is a common family tale told around many Thanksgiving tables; the young child filled with compassion to the point of overflowing rescues some sickly, desperate animal who thereby becomes the beloved family pet. The greater the need of the animal, the greater the love, and then of course, the harder it is for the parents to say no. And they can't. Now, we too, have our own version that timeless story. Not without a twist, of course.
It is often assumed that children with ASD have a fundamental lack of empathy. Often this seems very true, like when my boys laugh at someone who is hurt or make a hurtful (albeit true) observation. However, I've always felt this bit of conventional wisdom was at best an oversimplification and possibly completely and utterly wrong. It is true that the boys often miss the social clues that might generate empathy in others, but I wouldn't regard that as a deficit in empathy, but rather of awareness. When they do become aware of the suffering of another the impact, the feeling of empathy, often seems overwhelming to them. So much so that I've often wondered if as opposed to a lack of empathy they actually possess it in excess to the point that they have to shut it off completely to avoid it's crushing heaviness.
Recently Daniel, who generally shows a stunning disregard for the material world around him put on an impressive display of compassion and empathy. Like the classic young child of so many family stories who takes in and nurses a bedraggled and half starving kitten and continues to protect it for years to come, Daniel rescued something of his own and is now fiercely protective of it. He worries about it. He checks on it. He makes arrangements for its safety when he is gone.
It is a nickel. A completely ordinary nickel, minted in 1994.
The nickel first came into my awareness when he suddenly sat upright in his top bunk as I began our nighttime story. He leaned over the bed and peered down intently at his desk. When asked why he said he was just checking on something and that was the end of it. The next night, when the process nearly repeated itself, I began to ask more questions. He was checking on his nickel, making sure it was safe. He said it was special, but didn't say why. Certainly odd behavior for Daniel, who typically cares not one cent for money and will open a card and lose any birthday money it might contain within seconds, letting it fall idly to the floor. The next night he went into more detail as he began to build a sort of protective shrine around the nickel. He had found it perched perilously above an open knot in the floorboards. He had saved it. He cried about it, how close it had come to being lost forever. He demanded the hole taped over before he would dare to move the nickel again. He searched out other dangerous holes in the house and demanded those be taped too. He checks on the nickel, to ensure its safety daily and before he goes to bed at night, he verifies that is safe. He won't let it be removed to a potentially safer location as he needs to KNOW that it is safe.
It may just be a nickel, but it is a start. The boys might not show empathy in the way most people expect, but it is there. It is there in an abundance.
27 April 2012
Sense meditation, sensory processing disorder and autism
Having children on the autism spectrum one comes to think about the senses in a completely different manner. Regardless of your level of philosophical or scientific interest this becomes a practical matter. In order to navigate the day with some level of peace and happiness a parent must be able to recognize all manner of sensory insults that may be assaulting your child, a child often unable to communicate what is wrong. You have to learn to see, feel and hear the world through anothers eyes, ears and skin and this turns out to be much tougher than one expects. The reality my boys perceive is far different from the reality my brain constructs for me. Lights are brighter. Patterns are everywhere and demand attention. Tags are like sandpaper. The sudden eruption of clapping, well, I don't even know what that is like other than to say it must be terrifying and horrible. Observing this I can't help but wonder about the nature of reality and how different their reality must be from mine.
These thoughts were part of my background musings when I read Temple Grandin's Animals in Translation. The book describes her experiences as a person with autism and relates her personal experience to her years of experience working with animals. She describes her brain as functioning closer to that of the animals she works with in regard to the intake of sensory input, which has allowed her to be very successful designing systems for handling cattle, for instance. The autistic brain, she contends, is in essence receiving the raw input of the senses without filtering the information the way a neurotypical brain does. This enables some amazing feats that defy our human experience but also results in a great amount of fear and anxiety.
These thoughts were part of my background musings when I read Temple Grandin's Animals in Translation. The book describes her experiences as a person with autism and relates her personal experience to her years of experience working with animals. She describes her brain as functioning closer to that of the animals she works with in regard to the intake of sensory input, which has allowed her to be very successful designing systems for handling cattle, for instance. The autistic brain, she contends, is in essence receiving the raw input of the senses without filtering the information the way a neurotypical brain does. This enables some amazing feats that defy our human experience but also results in a great amount of fear and anxiety.
The notion that the direct experience of raw sense data devoid of our well developed filters is a rather terrifying experience stands in contradiction to the Buddhist notion of open awareness in which raw experience of reality is strengthened through meditation using the senses as props for meditation. For the past couple months the mediation group I am a part of has been focusing on sense mediation, following the book Joy of Living by Mingyur Rinpoche. The focus of our work has been to utilize our senses to experience reality without our usual judgements, or at least that is the interpretation I've taken away. To be able to experience sounds as just sounds, smells as just smells, etc. is truly liberating. On a practical level I've seen results. The sounds of traffic, say a car honking, doesn't trigger the anxiety and cascade of thoughts about being late that it once did. It is just sound and I can now be freer to just experience that in the moment.
So, all that has me wondering what the disconnect between the positive experiences I've been having just experiencing sounds as sounds free of my filters of judgement and the troubled experience my children seem to have experiencing sounds as just sounds without any judgement or interpretation.
For the answer I'll delve, perhaps unskillfully, into the field of neurobiology. The boys seemed to be ruled by their amygdala. The amygdala is the small reptilian portion of the brain responsible for the flight or fight response. It is the amygdala that first receives the message that something long and skinny has been spotted on the side of the trail. And the amygdala always starts yelling, "SNAKE!" and sets action in motion. It is the amygdala that makes you jump, shout or run. It is a bit longer before the data makes its way to the prefrontal cortex where it will be analyzed and then the message will be sent that says, "it is just a stick, calm down" and the amygdala and it's burst of neurotransmitters is shut down. With the boys it seems, and some days more than others, that their brains are simply yelling "SNAKE, SNAKE, SNAKE" all day long in response to any and all forms of sensory input. Simply observing them you'd likely describe their reactions as panic and some days even a physiological change is evident as their pupils become dilated. Testing of neurotransmitters has also shown elevated levels of norepenephrine and adrenaline further confirming the increased activity of their amygdalas.
Again the question remains if Temple Grandin is correct and individuals with autism are experiencing something closer to the raw input of senses than the rest of us, what makes that experience quite terrifying for them, whereas through my effort to cultivate that kind of open awareness through sense meditation I've found an opposite release from the fear and anxiety that sense responses formerly elicited in me? I think, and I am really just guessing, the answer comes in one word, training. The first part of training has a occurred throughout my life in all manner of experience. I've learned that in most situations I am truly safe. I have some sense what other people are going to do in any situation. I can make quick predictions. However, being deficit in "theory of the mind" the boys perhaps lack this life experience. They don't know what other people are going to do. To them, humans are quite unpredictable, so to begin with they are on high alert already and simply don't have that background knowledge or training about being safe. The pathways leading to the prefrontal cortex and the interpretations of safety just aren't being strengthened as humans seem so unpredictable.
A second form of training could come through sense meditation. I suspect that when I've been meditating on certain sense input in a deliberate manner I have actually been strengthening the neuronal connections between sense experience and a general feeling of well-being and safety produced by the act of meditation. The amygdala isn't interested in meditation and is happily turned off allowing connections to the prefrontal cortex to be strengthened preferentially. This changes the way I respond now, leading to calmer and less reactive response to sensory input.
I wonder, therefore, if sense meditation (or meditation in general) would be a good approach that could help calm the reactivity of the boys, teaching them to safely co-exist with sounds and other sensory input. While I've not seen sense meditation ever described as a therapy for autism there are numerous other forms of music therapy or therapeutic listening that I suspect may act on a similar notion.
22 March 2012
Don't Reset the Bar. Throw it Away (or Recycle it)
A few days ago a thought began to grow and dominate more of my time. It wasn't really a new thought but it started to take on renewed focus. It began, as a lot of my thoughts do, as an off-shoot of what was a theoretically humorous Facebook status update. It would have gone something like this: You know the bar is set pretty low when the day your first-grader drops the f-bomb in the middle of class is described as a "pretty good day" by his teachers and it is in fact way better than the day his brother had.
Because the day was so horribly disastrous for his brother I wasn't much in the mood to post something funny. Instead, I was much more inclined to obsess over the current state of affairs at school, how we evaluate the boys and the various "bars" we are continually setting for them.
What I concluded was that, particularly with one of the boys, no ordinary seven year-old is subjected to more judgment and evaluation than he is in the course of an ordinary day. And sadly and ironically perhaps no child is more ill-equipped to emotionally handle this judgement or potential failure than he is. And given his deficits in the area of impulse control and deficits in his ability to understand the actions, expectations and motivations of others he is also far more likely than most to have the occasional slip-up during the course of the day. Slip-ups are an expected outcome, a result of his Asperger's condition. Given these three points it seems we've put him in a shockingly unfair situation. Unfair and harmful.
He is subjected to this continued evaluation both at home and at school, although at home it is hopefully more subtle or hidden. At home I keep a "behavior notebook" in which I daily track his behavior along with his diet, any medical interventions of note and any observable health issues. Upon picking the boys up from school, which I do primarily so I can receive direct feedback from their teachers because the boy's reports are typically incomplete or unreliable, my first action (before I even leave the parking lot most days) is to send a text message to my wife with a brief summary of their days. Good or bad. Black or white. Some days we can't even wait that long. I might email the school on some pretext or another in hopes of getting an update, an answer to the eternal question, "how is he doing?" Or my wife will call me, often with the same question, "have you heard anything from school today?"
At school the ever-present judgement is even worse, or at least much more obvious to him. And worse by far than what other children experience. He is on a "star-system." Judging by the fact that this system was employed both in NC and here in NY and that I've heard others mention it, I suspect that it is a pretty standard, if not universal, aspect of IEPs for children with Asperger's. A standard part of the tool kit, to be sure. In short, his day is broken down into 12 segments of time, divided into two halves. If he stays on task and is not disruptive to the class he receives a star. If he receives 5 stars in a half-day, he gets a prize. A good day merits two prizes. I can see both hands full as he comes down the hall at the end of a "good day" and I breathe a sigh of relief. Some days it is all I can do to keep from crying in front of a lobby full of moms when I see two hands full.
On the plus side, this system gives him a clear and definable goal and a short enough time period that it is achievable. The notion of simply "being good at school" makes no sense to him and is pointless. Tangible things are better. Also, all this judgement can provide truly useful data. There is a real need to evaluate different interventions and I prefer to depend on data rather than anecdotes subject to the moods and recollections of various people.
Unfortunately, it also means that we spend a great deal more time evaluating life, as opposed to living it. Not very Buddhist. And it serves to continually undermine my efforts to teach the boys that the world simply isn't all black and white, all right or all wrong, all glorious triumph or devastating failure. Because regardless of what happened positive or negative, the end of the day comes down to a binary judgement. Prize or no prize. Thumbs up or thumbs down.
In fact, I believe this constant judgement is actually the cause of, or at least a contributor to, a lot of the problems we've seen because he has a truly pathological and debilitating fear of failure or losing. This is tough enough for your average seven year-old, for instance, when the simplest gym or playground game carries the ugly specter of "losing". All kids are bound to have the occasional meltdown or shed a tear over a failure or loss. But with the "star system" and the everyday potential for reward every minute carries with it the potential for failure. The larger the reward the greater the anxiety. And unfortunately the fear of failure is so pronounced that to avoid it he would prefer willful self-destruction, which is at least under his control.
The result of this system has become an out-of-control spiral. Confirming his view of the world his days are either stunning successes or catastrophic failures. This isn't merely anecdote. I have the data I abhor to back me up. Of the last two months, 65% of his "half-days" are prize-winning successes. These 5+ mornings or afternoons are always reported to me as being "a great morning," etc. In contrast, more than a quarter of halves are 2 stars or less; catastrophic periods in which he spends more time removed from the class, forcibly at times, than in class. This leaves very few days in which it just goes a little bad, a couple slip-ups. When it starts to go bad, it appears to go all the way bad in a vast majority of cases. And, in fact, I've had to pick him up from school early more often in the last two months when he has had a 4-star half day.
Given that repeated perfection is a rather absurd goal for a seven year-old boy with Asperger's what I'd like to see is more 4s. But, in reality I think as long as the star system exists, there will be no 4s. Because in his reality a 4 represents failure, complete and absolute. 4 means "no prize." So he's right to conclude that there is no difference between 4 and 0 because there isn't. He, therefore, is likely to fight like hell when he sees that star disappear, the star that determines complete success and complete failure. And he does. And he often doesn't recover.
So, the million dollar question is how do we help this boy without making him feel like a failure? How to teach, without teaching him he is bad? How do we present expectations without presenting the fact that he fails to meet these expectations? How do we correct without the sense of punishment that so disables him? I wish I had an answer to present, but I don't. I do know that we'd do better to forget the "star-system" and better to not worry so much about raising or lowering the bar and trying to find a way just to be and be helpful to him.
Because the day was so horribly disastrous for his brother I wasn't much in the mood to post something funny. Instead, I was much more inclined to obsess over the current state of affairs at school, how we evaluate the boys and the various "bars" we are continually setting for them.
What I concluded was that, particularly with one of the boys, no ordinary seven year-old is subjected to more judgment and evaluation than he is in the course of an ordinary day. And sadly and ironically perhaps no child is more ill-equipped to emotionally handle this judgement or potential failure than he is. And given his deficits in the area of impulse control and deficits in his ability to understand the actions, expectations and motivations of others he is also far more likely than most to have the occasional slip-up during the course of the day. Slip-ups are an expected outcome, a result of his Asperger's condition. Given these three points it seems we've put him in a shockingly unfair situation. Unfair and harmful.
He is subjected to this continued evaluation both at home and at school, although at home it is hopefully more subtle or hidden. At home I keep a "behavior notebook" in which I daily track his behavior along with his diet, any medical interventions of note and any observable health issues. Upon picking the boys up from school, which I do primarily so I can receive direct feedback from their teachers because the boy's reports are typically incomplete or unreliable, my first action (before I even leave the parking lot most days) is to send a text message to my wife with a brief summary of their days. Good or bad. Black or white. Some days we can't even wait that long. I might email the school on some pretext or another in hopes of getting an update, an answer to the eternal question, "how is he doing?" Or my wife will call me, often with the same question, "have you heard anything from school today?"
At school the ever-present judgement is even worse, or at least much more obvious to him. And worse by far than what other children experience. He is on a "star-system." Judging by the fact that this system was employed both in NC and here in NY and that I've heard others mention it, I suspect that it is a pretty standard, if not universal, aspect of IEPs for children with Asperger's. A standard part of the tool kit, to be sure. In short, his day is broken down into 12 segments of time, divided into two halves. If he stays on task and is not disruptive to the class he receives a star. If he receives 5 stars in a half-day, he gets a prize. A good day merits two prizes. I can see both hands full as he comes down the hall at the end of a "good day" and I breathe a sigh of relief. Some days it is all I can do to keep from crying in front of a lobby full of moms when I see two hands full.
On the plus side, this system gives him a clear and definable goal and a short enough time period that it is achievable. The notion of simply "being good at school" makes no sense to him and is pointless. Tangible things are better. Also, all this judgement can provide truly useful data. There is a real need to evaluate different interventions and I prefer to depend on data rather than anecdotes subject to the moods and recollections of various people.
Unfortunately, it also means that we spend a great deal more time evaluating life, as opposed to living it. Not very Buddhist. And it serves to continually undermine my efforts to teach the boys that the world simply isn't all black and white, all right or all wrong, all glorious triumph or devastating failure. Because regardless of what happened positive or negative, the end of the day comes down to a binary judgement. Prize or no prize. Thumbs up or thumbs down.
In fact, I believe this constant judgement is actually the cause of, or at least a contributor to, a lot of the problems we've seen because he has a truly pathological and debilitating fear of failure or losing. This is tough enough for your average seven year-old, for instance, when the simplest gym or playground game carries the ugly specter of "losing". All kids are bound to have the occasional meltdown or shed a tear over a failure or loss. But with the "star system" and the everyday potential for reward every minute carries with it the potential for failure. The larger the reward the greater the anxiety. And unfortunately the fear of failure is so pronounced that to avoid it he would prefer willful self-destruction, which is at least under his control.
The result of this system has become an out-of-control spiral. Confirming his view of the world his days are either stunning successes or catastrophic failures. This isn't merely anecdote. I have the data I abhor to back me up. Of the last two months, 65% of his "half-days" are prize-winning successes. These 5+ mornings or afternoons are always reported to me as being "a great morning," etc. In contrast, more than a quarter of halves are 2 stars or less; catastrophic periods in which he spends more time removed from the class, forcibly at times, than in class. This leaves very few days in which it just goes a little bad, a couple slip-ups. When it starts to go bad, it appears to go all the way bad in a vast majority of cases. And, in fact, I've had to pick him up from school early more often in the last two months when he has had a 4-star half day.
Given that repeated perfection is a rather absurd goal for a seven year-old boy with Asperger's what I'd like to see is more 4s. But, in reality I think as long as the star system exists, there will be no 4s. Because in his reality a 4 represents failure, complete and absolute. 4 means "no prize." So he's right to conclude that there is no difference between 4 and 0 because there isn't. He, therefore, is likely to fight like hell when he sees that star disappear, the star that determines complete success and complete failure. And he does. And he often doesn't recover.
So, the million dollar question is how do we help this boy without making him feel like a failure? How to teach, without teaching him he is bad? How do we present expectations without presenting the fact that he fails to meet these expectations? How do we correct without the sense of punishment that so disables him? I wish I had an answer to present, but I don't. I do know that we'd do better to forget the "star-system" and better to not worry so much about raising or lowering the bar and trying to find a way just to be and be helpful to him.
02 March 2012
The No-Meditation Effect
It is often said you don't know how much you need something until it is gone, and over the past two weeks I have recieved a true lesson in that phenomenon as it relates to my meditation practice. Since begining my practice about two years ago I've been pretty consistent with my meditation, at least during the weekdays. Before I quit my job to relocate and stay home with the boys I'd set my alarm early (very early) to be able to meditate prior to leaving for work. It was a rountine I was able to keep daily. Now, my routine is to send the boys off on the bus, and then finish some basic chores around the house (so the thoughts of them wouldn't hound me on the pillow) prior to sitting down to meditate around ten o'clock. I've rarely missed a day. On the weekends, with the boys home, it is a bit more difficult and I often miss. Likewise, while traveling I've also experienced some brief breaks in my practice but never as long as the nine-day period I just inadvertantly endured while the boys were home from school for winter break.
In retrospect I should have gone back to setting an alarm to enable me to meditate first thing in the morning before boys awoke, but that seemed like a silly thing to do during the winter break "vacation." I thought that I could make up for the lack of formal sitting time by employing a "short time-many times" approach in which I just grabbed a handful of mindful breathing times throughout the day. For me, however, this just didn't work out.
I've often noticed that the benefits of some positive behavior are difficult to truly notice as they seem to accure slowly over time. It is hard to remember what things were like before and you don't notice how profound the effect has been until you take undo the positive change. This has often been the case when we've made adjustments to the dietary regimens of the boys. Likewise, the break in my meditation practice clearly served to illustrate how profound the benefits of daily meditation had truly been.
As I tried to get back into my routine this week a few things were apparent. Firstly, it was hard to sit down and do it. I skipped Monday and Tuesday altogether and for no good reason at all other than an uncharacteristic lack of motivation. So, nine days actually stretched into eleven. When I tried to sit down Wednesday I was so uncomforable, both physically and mentally, that I quit early.
Mentally the effect has been far worse. To be somewhat fair to myself, it has been a rough week. Things at the school are going badly and there are potentially tough decisions to be made and there is communication with school officials that needs to be handled in a thoughful way. There has been a lot to think about. Nonetheless, my return to my previous thought-patterns and habits has been surprising. I have not been sleeping well. I've been constantly replaying conversations in my mind, continually kicking myself over things I should have said (most of them mean or inflammatory). I've been mentally rehearsing hostile arguements in response to things nobody has even said to me yet. I've been plotting ways to embarass people by catching them in mistruths. I've been dreading the future and leaping to conclusions. I haven't been motivated to do much, no writing, etc. I've been short and cranky with the boys. Physically, I've been feeling sick and run down.
In short, I've been thinking, feeling and acting precisely like I was two years ago when I recognized that I needed to make a positive change and took up my daily meditation practice. And in just less than two weeks. Lesson clearly learned and this summer instead of sleeping in late I believe I'll be getting up early.
In retrospect I should have gone back to setting an alarm to enable me to meditate first thing in the morning before boys awoke, but that seemed like a silly thing to do during the winter break "vacation." I thought that I could make up for the lack of formal sitting time by employing a "short time-many times" approach in which I just grabbed a handful of mindful breathing times throughout the day. For me, however, this just didn't work out.
I've often noticed that the benefits of some positive behavior are difficult to truly notice as they seem to accure slowly over time. It is hard to remember what things were like before and you don't notice how profound the effect has been until you take undo the positive change. This has often been the case when we've made adjustments to the dietary regimens of the boys. Likewise, the break in my meditation practice clearly served to illustrate how profound the benefits of daily meditation had truly been.
As I tried to get back into my routine this week a few things were apparent. Firstly, it was hard to sit down and do it. I skipped Monday and Tuesday altogether and for no good reason at all other than an uncharacteristic lack of motivation. So, nine days actually stretched into eleven. When I tried to sit down Wednesday I was so uncomforable, both physically and mentally, that I quit early.
Mentally the effect has been far worse. To be somewhat fair to myself, it has been a rough week. Things at the school are going badly and there are potentially tough decisions to be made and there is communication with school officials that needs to be handled in a thoughful way. There has been a lot to think about. Nonetheless, my return to my previous thought-patterns and habits has been surprising. I have not been sleeping well. I've been constantly replaying conversations in my mind, continually kicking myself over things I should have said (most of them mean or inflammatory). I've been mentally rehearsing hostile arguements in response to things nobody has even said to me yet. I've been plotting ways to embarass people by catching them in mistruths. I've been dreading the future and leaping to conclusions. I haven't been motivated to do much, no writing, etc. I've been short and cranky with the boys. Physically, I've been feeling sick and run down.
In short, I've been thinking, feeling and acting precisely like I was two years ago when I recognized that I needed to make a positive change and took up my daily meditation practice. And in just less than two weeks. Lesson clearly learned and this summer instead of sleeping in late I believe I'll be getting up early.
21 February 2012
Buddha Board Meditation
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.
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.
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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