I was reading a book called "The Happiness of Pursuit" recently as part of my personal education to get a better grip on this puzzle that is Mason's brain.
What I have come to understand is that there are gaps in his neural construction of the representations of how he sees the world. But, where there are gaps there are also connections in other areas that typical people don't have often making it seem as if he is often psychic or intuitive on some way. Hence the the term neurodivergent.
I'm getting a better grasp on the truth that all of our realities are merely constructions created by our brains and we believe them to be true because we have common representations produced by a mechanism that is largely consistent across all people. The fact that there are people who have alternate configurations that result in different representations or constructions of reality are the exceptions that prove the rule. That is that all realities are perceptions.
We cannot truly know if the world or the universe is truly as we perceive. This is what science ultimately endeavors to determine, but even the tools of science and science itself are merely constructions of a mechanism capable of experiencing the universe in only a limited capacity. What if some neurodivergent perspective is, in fact, a more accurate representation of an objective reality.
If such aberrations in perception persist would they represent an evolution? By definition, yes. For now, they represent an anomaly, a dysfunction, a disorder, a difference at best.
But, what if those that view people like this, children particularly, as mystics or indigo kids are closer to the truth than the more common belief that they are simply disabled? What does that mean for our future? How much further would we advance and how much more quickly if we simply embraced these differences rather than constantly seeking to fix them?
Our future has always been locked in what we seek to understand and our means has always been to master rather than nurture and foster. Perhaps that needs to be our first evolution before we let such radically different perspectives lead us to whatever future we construct. After all, our track record of getting to this far hasn't been so great. Some might say we've been lucky to have survived.
Sunday, 4 May 2014
Tuesday, 10 April 2012
Holland Shmolland
I just had to repost this because I don't if I have read a better analogy for living with an autistic child and how freakishly close this is to our experience. Enjoy.
Velvet Martin
Holland Schmollanda
by Laura Krueger Crawford
If you have a special needs child, which I do, and if you troll the Internet for information, which I have done, you will come across a certain inspirational analogy. It goes like this:
Imagine that you are planning a trip to Italy. You read all the latest travel books, you consult with friends about what to pack, and you develop an elaborate itinerary for your glorious trip. The day arrives.
You board the plane and settle in with your in-flight magazine, dreaming of trattorias, gondola rides, and gelato. However when the plane lands you discover, much to your surprise, you are not in Italy -- you are in Holland. You are greatly dismayed at this abrupt and unexpected change in plans.
You rant and rave to the travel agency, but it does no good. You are stuck. After awhile, you tire of fighting and begin to look at what Holland has to offer. You notice the beautiful tulips, the kindly people in the wooden shoes, the french fries with mayonnaise, and you think, "This isn't exactly what I had planned, but it's not so bad. It's just different."
Having a child with special needs is supposed to be like this -- not any worse than having a typical child -- just different.
When I read this my son was almost 3, completely non-verbal and was hitting me over 100 times a day. While I appreciated the intention of the story, I couldn't help but think, "Are they kidding? We're not in some peaceful country dotted with windmills. We are in a country under siege -- dodging bombs, boarding overloaded helicopters, bribing officials -- all the while thinking, "What happened to our beautiful life?"
That was five years ago.
My son is now 8 and though we have come to accept that he will always have autism, we no longer feel like citizens of a battle-torn nation. With the help of countless dedicated therapists and teachers, biological interventions, and an enormously supportive family, my son has become a fun-loving, affectionate boy with many endearing qualities and skills. In the process we've created . . . well . . . our own country, with its own unique traditions and customs.
It's not a war zone, but it's still not Holland. Let's call it Schmolland. In Schmolland, it's perfectly customary to lick walls, rub cold pieces of metal across your mouth and line up all your toys end-to-end. You can show affection by giving a "pointy chin." A "pointy chin" is when you act like you are going to hug someone and just when you are really close, you jam your chin into the other person's shoulder. For the person giving the "pointy chin" this feels really good, for the receiver, not so much -- but you get used to it.
For citizens of Schmolland, it is quite normal to repeat lines from videos to express emotion. If you are sad, you can look downcast and say, "Oh, Pongo." When mad or anxious, you might shout, "Snow can't stop me!" or "Duchess, kittens, come on!" Sometimes, "And now our feature presentation" says it all.
In Schmolland, there's not a lot to do, so our citizens find amusement wherever they can. Bouncing on the couch for hours, methodically pulling feathers out of down pillows, and laughing hysterically in bed at 4:00 a.m. are all traditional Schmutch pastimes.
The hard part of living in our country is dealing with people from other countries. We try to assimilate ourselves and mimic their customs, but we aren't always successful. It's perfectly understandable that an 8 year-old from Schmolland would steal a train from a toddler at the Thomas the Tank Engine Train Table at Barnes and Noble. But this is clearly not understandable or acceptable in other countries, and so we must drag our 8 year-old out of the store kicking and screaming, all the customers looking on with stark, pitying stares. But we ignore these looks and focus on the exit sign because we are a proud people.
Where we live it is not surprising when an 8 year-old boy reaches for the fleshy part of a woman's upper torso and says, "Do we touch boodoo?" We simply say, "No, we do not touch boodoo," and go on about our business. It's a bit more startling in other countries, however, and can cause all sorts of cross-cultural misunderstandings.
And, though most foreigners can get a drop of water on their pants and still carry on, this is intolerable to certain citizens in Schmolland, who insist that the pants must come off no matter where they are and regardless of whether another pair of pants is present.
Other families who have special needs children are familiar and comforting to us, yet are still separate entities. Together we make up a federation of countries, kind of like Scandinavia. Like a person from Denmark talking to a person from Norway (or in our case, someone from Schmenmark talking to someone from Schmorway.), we share enough similarities in our language and customs to understand each other, but conversations inevitably highlight the diversity of our traditions. "My child eats paper. Yesterday he ate a whole video box." "My daughter only eats four foods, all of them white." "We finally had to lock up the VCR because my child was obsessed with the rewind button." "My son wants to blow on everyone."
There is one thing we all agree on. We are a growing population. Ten years ago, 1 in 10,000 children had autism. Today the rate is approximately 1 in 250. Something is dreadfully wrong. Though the causes of the increase are still being hotly debated, a number of parents and professionals believe genetic predisposition has collided with too many environmental insults -- toxins, chemicals, antibiotics, vaccines -- to create immunological chaos in the nervous system of developing children. One medical journalist speculated these children are the proverbial "canary in the coal mine", here to alert us to the growing dangers in our environment.
While this is certainly not a view shared by all in the autism community, it feels true to me.
I hope that researchers discover the magic bullet we all so desperately crave. And I will never stop investigating new treatments and therapies that might help my son. But more and more my priorities are shifting from what "could be" to "what is." I look around this country my family has created, with all its unique customs, and it feels like home. For us, any time spent "nation building" is time well spent.
-- The End --
Velvet Martin
Holland Schmollanda
by Laura Krueger Crawford
If you have a special needs child, which I do, and if you troll the Internet for information, which I have done, you will come across a certain inspirational analogy. It goes like this:
Imagine that you are planning a trip to Italy. You read all the latest travel books, you consult with friends about what to pack, and you develop an elaborate itinerary for your glorious trip. The day arrives.
You board the plane and settle in with your in-flight magazine, dreaming of trattorias, gondola rides, and gelato. However when the plane lands you discover, much to your surprise, you are not in Italy -- you are in Holland. You are greatly dismayed at this abrupt and unexpected change in plans.
You rant and rave to the travel agency, but it does no good. You are stuck. After awhile, you tire of fighting and begin to look at what Holland has to offer. You notice the beautiful tulips, the kindly people in the wooden shoes, the french fries with mayonnaise, and you think, "This isn't exactly what I had planned, but it's not so bad. It's just different."
Having a child with special needs is supposed to be like this -- not any worse than having a typical child -- just different.
When I read this my son was almost 3, completely non-verbal and was hitting me over 100 times a day. While I appreciated the intention of the story, I couldn't help but think, "Are they kidding? We're not in some peaceful country dotted with windmills. We are in a country under siege -- dodging bombs, boarding overloaded helicopters, bribing officials -- all the while thinking, "What happened to our beautiful life?"
That was five years ago.
My son is now 8 and though we have come to accept that he will always have autism, we no longer feel like citizens of a battle-torn nation. With the help of countless dedicated therapists and teachers, biological interventions, and an enormously supportive family, my son has become a fun-loving, affectionate boy with many endearing qualities and skills. In the process we've created . . . well . . . our own country, with its own unique traditions and customs.
It's not a war zone, but it's still not Holland. Let's call it Schmolland. In Schmolland, it's perfectly customary to lick walls, rub cold pieces of metal across your mouth and line up all your toys end-to-end. You can show affection by giving a "pointy chin." A "pointy chin" is when you act like you are going to hug someone and just when you are really close, you jam your chin into the other person's shoulder. For the person giving the "pointy chin" this feels really good, for the receiver, not so much -- but you get used to it.
For citizens of Schmolland, it is quite normal to repeat lines from videos to express emotion. If you are sad, you can look downcast and say, "Oh, Pongo." When mad or anxious, you might shout, "Snow can't stop me!" or "Duchess, kittens, come on!" Sometimes, "And now our feature presentation" says it all.
In Schmolland, there's not a lot to do, so our citizens find amusement wherever they can. Bouncing on the couch for hours, methodically pulling feathers out of down pillows, and laughing hysterically in bed at 4:00 a.m. are all traditional Schmutch pastimes.
The hard part of living in our country is dealing with people from other countries. We try to assimilate ourselves and mimic their customs, but we aren't always successful. It's perfectly understandable that an 8 year-old from Schmolland would steal a train from a toddler at the Thomas the Tank Engine Train Table at Barnes and Noble. But this is clearly not understandable or acceptable in other countries, and so we must drag our 8 year-old out of the store kicking and screaming, all the customers looking on with stark, pitying stares. But we ignore these looks and focus on the exit sign because we are a proud people.
Where we live it is not surprising when an 8 year-old boy reaches for the fleshy part of a woman's upper torso and says, "Do we touch boodoo?" We simply say, "No, we do not touch boodoo," and go on about our business. It's a bit more startling in other countries, however, and can cause all sorts of cross-cultural misunderstandings.
And, though most foreigners can get a drop of water on their pants and still carry on, this is intolerable to certain citizens in Schmolland, who insist that the pants must come off no matter where they are and regardless of whether another pair of pants is present.
Other families who have special needs children are familiar and comforting to us, yet are still separate entities. Together we make up a federation of countries, kind of like Scandinavia. Like a person from Denmark talking to a person from Norway (or in our case, someone from Schmenmark talking to someone from Schmorway.), we share enough similarities in our language and customs to understand each other, but conversations inevitably highlight the diversity of our traditions. "My child eats paper. Yesterday he ate a whole video box." "My daughter only eats four foods, all of them white." "We finally had to lock up the VCR because my child was obsessed with the rewind button." "My son wants to blow on everyone."
There is one thing we all agree on. We are a growing population. Ten years ago, 1 in 10,000 children had autism. Today the rate is approximately 1 in 250. Something is dreadfully wrong. Though the causes of the increase are still being hotly debated, a number of parents and professionals believe genetic predisposition has collided with too many environmental insults -- toxins, chemicals, antibiotics, vaccines -- to create immunological chaos in the nervous system of developing children. One medical journalist speculated these children are the proverbial "canary in the coal mine", here to alert us to the growing dangers in our environment.
While this is certainly not a view shared by all in the autism community, it feels true to me.
I hope that researchers discover the magic bullet we all so desperately crave. And I will never stop investigating new treatments and therapies that might help my son. But more and more my priorities are shifting from what "could be" to "what is." I look around this country my family has created, with all its unique customs, and it feels like home. For us, any time spent "nation building" is time well spent.
-- The End --
Wednesday, 21 March 2012
Normal Is Just A Number
I was reading a book recently called The Narcissism Epidemic about personal and cultural narcissism. It is a very interesting book because it's not too clinical and takes the reader through a history and evolution of narcissism from Greek mythology to reality television.
The most disturbing revelation in the book is that narcissistic personalities have become so pervasive in our society that they are considering dropping narcissistic personality disorder from the DSM V - the official catalogue of psychological dysfunction and disorder. Ironically, this seems to be the same rationale for considering dropping aspergers from the DSM V.
If we were to infer a trend here it would seem that the thinking is that once a disorder reaches a point of critical mass it's considered normal and no longer dysfunctional regardless of its impact on the individual or that individual's impact on the world around them.
In simple terms this is what people refer to as normalization. Usually we think of normalizing as changing individuals to fit the status quo but normal can mean a change in the status quo if a there are enough members with enough time and influence to impact it.
So, the nature of normal is really a matter of perspective. People often see their lives with autism as abnormal and see their objective as finding the bridge back to their perception of the status quo rather than accepting their new normal. The complications people see in their lives are not caused by having a an autistic child but in trying to not have one.
It's amazing how much simpler and more fluid your life becomes when you accept your normal and allow your child to be. When you focus on their strengths and let them be weak where they're weak, their strengths will overtake,compensate, dilute,and camouflage what was only perceived as a weakness
The most disturbing revelation in the book is that narcissistic personalities have become so pervasive in our society that they are considering dropping narcissistic personality disorder from the DSM V - the official catalogue of psychological dysfunction and disorder. Ironically, this seems to be the same rationale for considering dropping aspergers from the DSM V.
If we were to infer a trend here it would seem that the thinking is that once a disorder reaches a point of critical mass it's considered normal and no longer dysfunctional regardless of its impact on the individual or that individual's impact on the world around them.
In simple terms this is what people refer to as normalization. Usually we think of normalizing as changing individuals to fit the status quo but normal can mean a change in the status quo if a there are enough members with enough time and influence to impact it.
So, the nature of normal is really a matter of perspective. People often see their lives with autism as abnormal and see their objective as finding the bridge back to their perception of the status quo rather than accepting their new normal. The complications people see in their lives are not caused by having a an autistic child but in trying to not have one.
It's amazing how much simpler and more fluid your life becomes when you accept your normal and allow your child to be. When you focus on their strengths and let them be weak where they're weak, their strengths will overtake,compensate, dilute,and camouflage what was only perceived as a weakness
Tuesday, 20 March 2012
Choose Your Gauntlet
Even though Mason is only 9, I have been working with people with special needs including autism since 1989. In that time I've also accumulated a college diploma and a couple of degrees. Suffice to say I have met a wonderful array of wizards and whackadoodles. Not surprisingly some of the most amazing wizards have been people who barely graduated high school while some of the biggest whackadoodles have been the most credentialled. One of the most extreme cases was self anointed autism specialists back in the early 90s who had a ranch in southern Alberta and carried out practices that are illegal today and actually inspired the definitions of abuse and the provincial Protection for Persons in Care Act.Of course, that doesn't mean the axe doesn't swing the other way. For some reasons autism seems to attract more than its fair share. Perhaps it's the savant and mystic mythology around it. At any rate, the conversations and debates around autism have always covered subjects from nutrition to behavior to sleep to education and whatever you can think of. No topic, however, seems to raises more blood pressure than talking about what causes autism unless maybe what it is.
The nature of the debate would seem, on the surface, to be around genetics vs environment. On one side you have those who believe their children were born the way they are and different characteristics manifest at different stages of development or as is often the case they don't and the rising incidence of autism is largely a matter of increasingly effective diagnosis. On the other side there are the people who believe autism is caused by a toxic environment and the rise is a matter of an increasingly toxic environment and particularly man made chemicals like vaccines and preservatives.
I would suggest that the real crux of the argument is a matter of acceptance over hopelessness. If you are unwilling to accept that this is your child and this is who they are and who they are going be then you have to believe they are afflicted with a pathogen- a reversible error -presumably caused by some outside force you can hold accountable and it is your responsibility to do whatever is necessary to correct this tragedy.
Given this perspective there are really two choice- three if you include denial-
1. You can become an Autism Warrior. You can declare war, flog fringe theories about vaccines and toxins, march in parades, rant in rancour,rally support from celebrity pseudo experts,and vow to eradicate this demon scourge from the world. You can comb the world for magic treatments and experimental therapies no matter how invasive or uncomfortable and martyr your child to the cause (or convince others to if you don't have one of your own) in the hope of recovering the one you expected. You can flaunt your righteous indignation as passionate resolve and judge the rest of as ignorant or naive for not seeing the truth as you see it.
The other choice is to be an
2. Autism Champion. You can declare your unconditional love and acceptance of your child and encourage others to do the same. You can advocate and educate to increase awareness of unique human human beings rather than victims of a plague. You can seek out specialists and strategies and acquire knowledge and skills to give your child the best quality of life and the most opportunity to become the person they can be rather than try to make them into something you want or think they should be. You can celebrate the gift of learning you have been given and marvel at daily miracles that others take for granted rather than live in mourning for what you think you should have had. You can revel or you can rail.
You can choose. You can do whatever you like. You can carry your torch of martyrdom, shout from the rooftops, and call it a revolution. You can also expect resistance. You can expect me to be where you are advocating for acceptance. You can expect me to be the roadblock on your path of self sympathy and self validation because it isn't about you. And you can expect me to come out swinging when you imply or intimate that I'm the same as you and especially that my child is anything you think he is. He is not damaged, dysfunctional,or diseased. He is autistic. You can say and do whatever you like, but then so can I. I choose to be a champion, but if you bring your warrior cry to my door you can expect to find a warrior on the other side.
The nature of the debate would seem, on the surface, to be around genetics vs environment. On one side you have those who believe their children were born the way they are and different characteristics manifest at different stages of development or as is often the case they don't and the rising incidence of autism is largely a matter of increasingly effective diagnosis. On the other side there are the people who believe autism is caused by a toxic environment and the rise is a matter of an increasingly toxic environment and particularly man made chemicals like vaccines and preservatives.
I would suggest that the real crux of the argument is a matter of acceptance over hopelessness. If you are unwilling to accept that this is your child and this is who they are and who they are going be then you have to believe they are afflicted with a pathogen- a reversible error -presumably caused by some outside force you can hold accountable and it is your responsibility to do whatever is necessary to correct this tragedy.
Given this perspective there are really two choice- three if you include denial-
1. You can become an Autism Warrior. You can declare war, flog fringe theories about vaccines and toxins, march in parades, rant in rancour,rally support from celebrity pseudo experts,and vow to eradicate this demon scourge from the world. You can comb the world for magic treatments and experimental therapies no matter how invasive or uncomfortable and martyr your child to the cause (or convince others to if you don't have one of your own) in the hope of recovering the one you expected. You can flaunt your righteous indignation as passionate resolve and judge the rest of as ignorant or naive for not seeing the truth as you see it.
The other choice is to be an
2. Autism Champion. You can declare your unconditional love and acceptance of your child and encourage others to do the same. You can advocate and educate to increase awareness of unique human human beings rather than victims of a plague. You can seek out specialists and strategies and acquire knowledge and skills to give your child the best quality of life and the most opportunity to become the person they can be rather than try to make them into something you want or think they should be. You can celebrate the gift of learning you have been given and marvel at daily miracles that others take for granted rather than live in mourning for what you think you should have had. You can revel or you can rail.
You can choose. You can do whatever you like. You can carry your torch of martyrdom, shout from the rooftops, and call it a revolution. You can also expect resistance. You can expect me to be where you are advocating for acceptance. You can expect me to be the roadblock on your path of self sympathy and self validation because it isn't about you. And you can expect me to come out swinging when you imply or intimate that I'm the same as you and especially that my child is anything you think he is. He is not damaged, dysfunctional,or diseased. He is autistic. You can say and do whatever you like, but then so can I. I choose to be a champion, but if you bring your warrior cry to my door you can expect to find a warrior on the other side.
Friday, 16 March 2012
The Reset set set set set set
As the parent of an autistic child one comes to accept, acknowledge, and expect the unexpected. Behavior that draws attention and quizzical expressions from curious onlookers barely Makes it onto our radar. In fact,we have a whole different perspective of "unusual". Ironically, most others wouldn't even recognize it.
This morning for example, I went up to prompt Mason to get ready for school and found him nicely dressed in jeans and a button shirt that he never wears, in fact he doesn't were button shirts given the choice. Of course, I happily complimented him on how nice he looked and expressed my pleasure that he tried something new. His response was to point to his closet and objected "But Dad! I'm all our of t-shirts" despite the the fact that there was a variety of long and short sleeved shirts hanging in plain view. It became apparent in the context of other observations over the past couple of weeks that, as Connie and I suspected, we were in familiar territory even if we hadn't been here for a few years
The thing about autism that only parents of autistic children get is that, like 80s music, nothing is ever gone for good. While Masons school team is finding themselves scratching their heads over curious behavior they thought he was passed, we recognize something we have come to refer to as The Reset.
After 3 years of hard fought consistent progress marked by a trail of bruises, batterings, destruction, and disruption Mason sits in class, does regular work, pays attention, and generally likes going to school... until the past couple of weeks. At first,we thought it was just a full moon/new moon thing. The usual hyperactivity reactivity sensitivity and other -ivities- basically autism on steroids- that lasts a a day or two stretched into a week and compounded with confusion and disorientation, loss of vocabulary and abilities, and decreased tolerance and impulse control. This culminated last week in a mild fever that instantly set off our alarm bells and was all but confirmed this morning.
For the first five years of his life Mason experienced fevers about twice a year in the spring and fall that would last about two weeks in which he would pretty much sleep and not eat. There was not much to do. He didn't even lose weight. One one level we secretly thanked God for the opportunity to watch him sleep, stroke his face, and just get a good look at him. After a couple of weeks the fever disappeared as quickly as it came and he was back to his ear to ear grinning, up all night, bouncing off the wall, self.
At first we didn't really notice any post hibernation changes. He didn't eat, sleep, or talk, just more or less moved from one stimulus to the next lying on the floor running cars in front of his face, watching videos, and trying to get his needs across. As time went on and he developed more skills we discovered that after the fever a lot of skills and abilities would disappear and new or old behaviors would appear in their place, so we go back to the successful strategies and start over. Within a month or two the mysteriously missing skills, language, what have you would return with friends- new language and skills that invariably left us looking at each other dumbstruck going "where did that come from". Of course not all the language and behavior was particularly desirable, but you take the good with bad and try to convert the bad as best you can, take solace in the fact that some acting out, defiance, and rebellion is just normal and celebrate that even if the expression of it isn't exactly. Eventually we came to anticipate them and when they stopped we waited, watched, looked for signs and looked at each curiously and shrugged when they didn't come.
Fast forward three years without a reset and suddenly at 9 the signs are back like the aliens returning. while the symptoms seem more subtle at the moment we definitely recognize them and unfortunately we are the only people currently in his life who ever experienced them. Now we have to educate everybody who thought they were just getting a handle on him about a whole new aspect of the enigma that is Mason.
Of course, we are more experienced and knowledgeable and have been down a road like this before and that's what our life is all about. This time we are heading into preadolescence -the warm up to puberty- and though we've been through it twice with our (psuedo) neurotypical kids -a very loose reference- It is, as always, a very different thing with Mason. He is bigger, stronger, and faster and much more aware of what's going on around him. He picks up things from other kids who are entering the same crazy stage of growth and uncertainty that he is. He of course is not like them. He is more sensitive to sensory stimulus and processes social information differently. Top that off with a genetic predisposition to extreme adolescent growth -Connie is 5'11' and her father is 6'8'- and we have a recipe for autism and puberty on steroids.
Buckle up. It could be a bumpy ride. But then, I have generally found that the bumpier the ride the more interesting the journey and the more rewarding the destination.
This morning for example, I went up to prompt Mason to get ready for school and found him nicely dressed in jeans and a button shirt that he never wears, in fact he doesn't were button shirts given the choice. Of course, I happily complimented him on how nice he looked and expressed my pleasure that he tried something new. His response was to point to his closet and objected "But Dad! I'm all our of t-shirts" despite the the fact that there was a variety of long and short sleeved shirts hanging in plain view. It became apparent in the context of other observations over the past couple of weeks that, as Connie and I suspected, we were in familiar territory even if we hadn't been here for a few years
The thing about autism that only parents of autistic children get is that, like 80s music, nothing is ever gone for good. While Masons school team is finding themselves scratching their heads over curious behavior they thought he was passed, we recognize something we have come to refer to as The Reset.
After 3 years of hard fought consistent progress marked by a trail of bruises, batterings, destruction, and disruption Mason sits in class, does regular work, pays attention, and generally likes going to school... until the past couple of weeks. At first,we thought it was just a full moon/new moon thing. The usual hyperactivity reactivity sensitivity and other -ivities- basically autism on steroids- that lasts a a day or two stretched into a week and compounded with confusion and disorientation, loss of vocabulary and abilities, and decreased tolerance and impulse control. This culminated last week in a mild fever that instantly set off our alarm bells and was all but confirmed this morning.
For the first five years of his life Mason experienced fevers about twice a year in the spring and fall that would last about two weeks in which he would pretty much sleep and not eat. There was not much to do. He didn't even lose weight. One one level we secretly thanked God for the opportunity to watch him sleep, stroke his face, and just get a good look at him. After a couple of weeks the fever disappeared as quickly as it came and he was back to his ear to ear grinning, up all night, bouncing off the wall, self.
At first we didn't really notice any post hibernation changes. He didn't eat, sleep, or talk, just more or less moved from one stimulus to the next lying on the floor running cars in front of his face, watching videos, and trying to get his needs across. As time went on and he developed more skills we discovered that after the fever a lot of skills and abilities would disappear and new or old behaviors would appear in their place, so we go back to the successful strategies and start over. Within a month or two the mysteriously missing skills, language, what have you would return with friends- new language and skills that invariably left us looking at each other dumbstruck going "where did that come from". Of course not all the language and behavior was particularly desirable, but you take the good with bad and try to convert the bad as best you can, take solace in the fact that some acting out, defiance, and rebellion is just normal and celebrate that even if the expression of it isn't exactly. Eventually we came to anticipate them and when they stopped we waited, watched, looked for signs and looked at each curiously and shrugged when they didn't come.
Fast forward three years without a reset and suddenly at 9 the signs are back like the aliens returning. while the symptoms seem more subtle at the moment we definitely recognize them and unfortunately we are the only people currently in his life who ever experienced them. Now we have to educate everybody who thought they were just getting a handle on him about a whole new aspect of the enigma that is Mason.
Of course, we are more experienced and knowledgeable and have been down a road like this before and that's what our life is all about. This time we are heading into preadolescence -the warm up to puberty- and though we've been through it twice with our (psuedo) neurotypical kids -a very loose reference- It is, as always, a very different thing with Mason. He is bigger, stronger, and faster and much more aware of what's going on around him. He picks up things from other kids who are entering the same crazy stage of growth and uncertainty that he is. He of course is not like them. He is more sensitive to sensory stimulus and processes social information differently. Top that off with a genetic predisposition to extreme adolescent growth -Connie is 5'11' and her father is 6'8'- and we have a recipe for autism and puberty on steroids.
Buckle up. It could be a bumpy ride. But then, I have generally found that the bumpier the ride the more interesting the journey and the more rewarding the destination.
Wednesday, 14 March 2012
Old timers hockey game
Out at the annual oldtimer hockey game watching the legends of hockey lace them up one more time. While all have got a little older, a little grayer, a little balder,and a little rounder most of the old guys have still got their chops. Among the silver manes taking part were Glenn Anderson and Marty McSorley. Younger retirees were represented by Theo Fleury and Trevor Kidd. However, the most impressive were the golden agers from my childhood, Bryan Trottier and Ron Duguay. While Trottier more resembles Dennis Franz these days he seems to still be in decent shape and hasn't lost his hands or his glide. As natural a skater as there ever was he floats freely and flips the puck amongst fellow hockey heroes and youthful amateurs like coach dad among a team of awkward minor leaguers. The 55 year old Duguay looks like some pulled him out of cold storage just for the game. With not only his trademark long hair flowing behind him, but his signature short kick skating style, easy turns, and natural stick handling Duguay is a slightly matured reflection of his 20s self that graced Madison Square Garden in the late 70s and early 80s. Beyond the pleasure of seeing hockey legends play again, if only in a pick up game, the hockey heroes gave a group of five year old novices dads the thrill of a life time playing a little shinny with their kids. (I'm sure it will be a great memory for the kids once they realize who they were playing with) Throughout the event, the players entertained with antics and pranks. Veteran referee Ron Hoggarth doubled as MC adding amusing narrative to the evening. All in all it was a great time for everybody in attendance as only irreverent aging heroes and little kids can provide. And on top of it all some local charities got a significant contribution.
Monday, 13 February 2012
More Heroes Less Martyrs
The recent news of the death of Whitney Houston and the ensuing media de luge have given me pause to consider the nature of personal responsibility and our cultural complicity in its general decline. Now, I'll be honest. The fact that I just finished reading a book about cultural narcissm,the fact that this is daily conversation with the teenagers in my household, and that I've never been a fan of Whitney Houston all contributed. Truthfully, I have never found her music to be anything but vocal gymnastics. Her talent is due all the respect she has been given. As an artist she never moved me. It's probably because I always found her insincere.
Any waste of life is a tragedy, but to whom much is given much is expected and she had too little expectation of herself. Too many have met their demise in planes trains and automobiles or succumbed to demons of hard fought lives to shed so many tears for someone who was given everything and wasted it. She was given the gift of extraordinary talent and beauty and born into the aristocracy of Motown. No one has ever been given a greater golden ticket. Perhaps being raised in the shadow of great women like Dionne Warwick and Aretha Franklin instilled a sense of entitlement that led her down her path of self destruction. Watching the Grammy's I'm reminded, that the likes of Paul McCartney, Bruce Sprinstein, even Joe Walsh who was notorious for his rockstar lifestyle have not only survived but are thriving as artists in their 60s and 70s. But again, self made artist who cut a path where there was none. Dave Grohl, almost 20 years after Kurt Cobain gave up, packed it in, and took his own life, is still keeping the faith and carry the torch calling for a new garage band revolution and will end up having more more success and influence than the Nirvana bonfire ever produced.
In the era of the 24/7 celebrity news cycle it seems as though all sense of personal responsibility has taken its leave along with manners, decorum, and good sense. I don't remember the last time I saw someone say "Yup that was a mess and its all my fault." In fact, its everything but my fault. A simple mantra in our home is that everyone that lives, has and will, is responsible for everything that happens to them between their first and last breathe. If you are standing in a field and get his by a meteor rock you are responsible because it is you who has to live (or not) with the consequences. If we are the worst parents on the planet our children are still responsible for the consequences because they have to walk in their skin, think their thoughts, and feel their feelings. This includes Mason. He is responsible for being autistic. It's not his fault. He didn't cause it and certainly didn't do anything to deserve it, but he does have to live with it no matter what any body else does for him or how much anyone fails him. Circumstances and experience frame and inform our perceptions and responses, but in the end they are incidental because we all have to live in ourselves with what we are given and what we experience.
We can honor, remember, and grieve for the Whitney Houstons of the world and we can continue to enjoy and appreciate the art they created. Unfortunately, though, her legacy is a fable- a cautionary tale- like so many before her and when the short wake of her passing has stilled others will continue to take control and responsibility for their destinies, create legacies worthy of their lives, and will be remembered for how they lived rather than how they died.
Any waste of life is a tragedy, but to whom much is given much is expected and she had too little expectation of herself. Too many have met their demise in planes trains and automobiles or succumbed to demons of hard fought lives to shed so many tears for someone who was given everything and wasted it. She was given the gift of extraordinary talent and beauty and born into the aristocracy of Motown. No one has ever been given a greater golden ticket. Perhaps being raised in the shadow of great women like Dionne Warwick and Aretha Franklin instilled a sense of entitlement that led her down her path of self destruction. Watching the Grammy's I'm reminded, that the likes of Paul McCartney, Bruce Sprinstein, even Joe Walsh who was notorious for his rockstar lifestyle have not only survived but are thriving as artists in their 60s and 70s. But again, self made artist who cut a path where there was none. Dave Grohl, almost 20 years after Kurt Cobain gave up, packed it in, and took his own life, is still keeping the faith and carry the torch calling for a new garage band revolution and will end up having more more success and influence than the Nirvana bonfire ever produced.
In the era of the 24/7 celebrity news cycle it seems as though all sense of personal responsibility has taken its leave along with manners, decorum, and good sense. I don't remember the last time I saw someone say "Yup that was a mess and its all my fault." In fact, its everything but my fault. A simple mantra in our home is that everyone that lives, has and will, is responsible for everything that happens to them between their first and last breathe. If you are standing in a field and get his by a meteor rock you are responsible because it is you who has to live (or not) with the consequences. If we are the worst parents on the planet our children are still responsible for the consequences because they have to walk in their skin, think their thoughts, and feel their feelings. This includes Mason. He is responsible for being autistic. It's not his fault. He didn't cause it and certainly didn't do anything to deserve it, but he does have to live with it no matter what any body else does for him or how much anyone fails him. Circumstances and experience frame and inform our perceptions and responses, but in the end they are incidental because we all have to live in ourselves with what we are given and what we experience.
We can honor, remember, and grieve for the Whitney Houstons of the world and we can continue to enjoy and appreciate the art they created. Unfortunately, though, her legacy is a fable- a cautionary tale- like so many before her and when the short wake of her passing has stilled others will continue to take control and responsibility for their destinies, create legacies worthy of their lives, and will be remembered for how they lived rather than how they died.
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