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
Wednesday 21 March 2012
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.
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