Dear VH1 Friends:
NON-SPAM ALERT:
What follows is not SPAM.
However, it is not easy to read.
It is not pleasant, convenient, titillating, or clever.
It does not attempt to sell anything.
It is not one of those chain-prayer things we all receive that are often (and however well intentioned) intrusive and abstract.
It is also not demeaning, judgmental nor is it exceptionally insightful.
It is, however, all too real.
And it depicts, with a personal perspective, the lives we in the Autism/LD community live each day.
-----------------------------------------------------------------------------------------------------------------------------------
On May 22, 1997, our then two-year old son, Patrick, vanished.
Gone.
He disappeared into an evil, indiscernible mist that we came to know as Autism.
Everything we had experienced with him in those two years, the first learned words, the emerging, engaging personality, the constant, palpable affections, in short, his entire person, melted away.
Inexorably.
And then, three years later, our daughter also slipped away.
As Mary and I absorbed the neurologists words, helpless to do anything to prevent or slow their regression, the fading away, we embarked on a forced march toward a new life that we then viewed (and, largely, still do) through a glass, darkly.
Because there is no playbook or instruction manual for how to care for a beloved one who lives in the world called Autism.
So, I write this for three primary reasons:
· To depict our lives. The reason Jim Watkins (newscaster with WB11 here in NY and Dad to a child who also went into the mists) helped make his wonderful film, Autism Every Day, is to show those who think that we all have kids like Raymond Babbitt that there is a stark and decidedly un-cinematic, other reality that exists.
· To cast light upon this reality. In 1933, Louis Brandeis wrote, “Publicity is justly commended as a remedy for social and industrial diseases. Sunlight is said to be the best of disinfectants; electrical light the most efficient policemanâ€. Well, we’re with the Judge on this one. There is nothing quirky, inherently humorous, or fabulous about caring for any developmentally-differently abled person. Listen to the women, the Moms. Why does it always seem to be the Moms? Those countless women among us who, often imperceptibly, do so much while saying so little.
· To ask you all to make the commitment to reach out to the person in your sphere of orbit who you know (and if you don’t know, trust me, there are several million of us out there…you can easily find a family in your town who lives this life). Don’t be afraid…just reach out and let them know that you’ve seen the film, that you really don’t have any idea of how difficult their lives are but that you would be willing to listen/help/assist them in any way you can. Oh, and one final rationale to bear in mind: yes, most of us believe that virtue truly is its own reward and that to extend our hands toward those among us who need is the right thing to do; but, think of the siblings. Think of the brothers and sisters and family who (as I am sure many of you would agree) feel isolated and often disconnected (while remaining steadfastly loving and fiercely devoted to their siblings) due to the remaining vestiges of stigma that our advanced civilization still chooses to assign to the different families among us.
Our son’s neurologist once told us, with absolute sincerity and without the kind of cloying, well-intentioned rhetoric that some will employ: “You know, I truly believe that the reason these children are given to us is to gently force us all to behave ourselves; to look more closely at the truly important parts of our lives and to look, with a more dismissive eye, at the ephemeral, material distractions of life. And to tell each other “I love you†more often.
And with each small victory one, as depicted on the Autism Speaks website and elsewhere, we can better resist the nagging imperative to wring our hands alone, in the darkness and think about the future and our own mortality and “what will happen to he or she†when I’m gone. And we won’t give in as easily to the more practical concerns such as “Will he ever be able to work�
Or, more accurately, who will give our tribe a chance?
Now, maybe, no more begging the guy in the local supermarket for just a chance to fill bags “as long as he doesn’t bring in any retard friends†while at work.
Now, maybe, no more pleading with politicians to try to make them understand that these are human beings. With the right to dignity. And the dignified life that can be achieved, partly, through work…or through any other endeavor at which we may contribute.
Now, maybe, no more having to explain to School Administrators the most fundamental truth: that our children have a moral and legal right to be educated to the furthest extent of their abilities and desire just the same as all children.
Now, maybe, somewhere a Mom and Dad might be able to sleep a little easier knowing that their son or daughter will, after all, be given an avenue through which they can become a little more like the rest of us. Even though we know that, they already are.
Now maybe, just maybe, we can all better uphold Mr. Jefferson’s great, profound proposition.
John Ruskin once wrote, “The highest reward for work is not what we get from it…but what we become by it.â€
What becomes of the people who derive comfort and sustenance for the fight (and make no mistake, the fight for acceptance of ourselves as ourselves goes on) from stories like those posted here?
It seems that a profound and shining thing has been drawn upon on VH 1\'s canvass.
And one of them is hope.
Thanks, VH 1
Steve McKenna
Basking Ridge, NJ
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Dear VH1 Friends:
NON-SPAM ALERT:
What follows is not SPAM.
However, it is not easy to read.
It is not pleasant, convenient, titillating, or clever.
It does not attempt to sell anything.
It is not one of those chain-prayer things we all receive that are often (and however well intentioned) intrusive and abstract.
It is also not demeaning, judgmental nor is it exceptionally insightful.
It is, however, all too real.
And it depicts, with a personal perspective, the lives we in the Autism/LD community live each day.
-----------------------------------------------------------------------------------------------------------------------------------
On May 22, 1997, our then two-year old son, Patrick, vanished.
Gone.
He disappeared into an evil, indiscernible mist that we came to know as Autism.
Everything we had experienced with him in those two years, the first learned words, the emerging, engaging personality, the constant, palpable affections, in short, his entire person, melted away.
Inexorably.
And then, three years later, our daughter also slipped away.
As Mary and I absorbed the neurologists words, helpless to do anything to prevent or slow their regression, the fading away, we embarked on a forced march toward a new life that we then viewed (and, largely, still do) through a glass, darkly.
Because there is no playbook or instruction manual for how to care for a beloved one who lives in the world called Autism.
So, I write this for three primary reasons:
· To depict our lives. The reason Jim Watkins (newscaster with WB11 here in NY and Dad to a child who also went into the mists) helped make his wonderful film, Autism Every Day, is to show those who think that we all have kids like Raymond Babbitt that there is a stark and decidedly un-cinematic, other reality that exists.
· To cast light upon this reality. In 1933, Louis Brandeis wrote, “Publicity is justly commended as a remedy for social and industrial diseases. Sunlight is said to be the best of disinfectants; electrical light the most efficient policemanâ€. Well, we’re with the Judge on this one. There is nothing quirky, inherently humorous, or fabulous about caring for any developmentally-differently abled person. Listen to the women, the Moms. Why does it always seem to be the Moms? Those countless women among us who, often imperceptibly, do so much while saying so little.
· To ask you all to make the commitment to reach out to the person in your sphere of orbit who you know (and if you don’t know, trust me, there are several million of us out there…you can easily find a family in your town who lives this life). Don’t be afraid…just reach out and let them know that you’ve seen the film, that you really don’t have any idea of how difficult their lives are but that you would be willing to listen/help/assist them in any way you can. Oh, and one final rationale to bear in mind: yes, most of us believe that virtue truly is its own reward and that to extend our hands toward those among us who need is the right thing to do; but, think of the siblings. Think of the brothers and sisters and family who (as I am sure many of you would agree) feel isolated and often disconnected (while remaining steadfastly loving and fiercely devoted to their siblings) due to the remaining vestiges of stigma that our advanced civilization still chooses to assign to the different families among us.
Our son’s neurologist once told us, with absolute sincerity and without the kind of cloying, well-intentioned rhetoric that some will employ: “You know, I truly believe that the reason these children are given to us is to gently force us all to behave ourselves; to look more closely at the truly important parts of our lives and to look, with a more dismissive eye, at the ephemeral, material distractions of life. And to tell each other “I love you†more often.
And with each small victory one, as depicted on the Autism Speaks website and elsewhere, we can better resist the nagging imperative to wring our hands alone, in the darkness and think about the future and our own mortality and “what will happen to he or she†when I’m gone. And we won’t give in as easily to the more practical concerns such as “Will he ever be able to work�
Or, more accurately, who will give our tribe a chance?
Now, maybe, no more begging the guy in the local supermarket for just a chance to fill bags “as long as he doesn’t bring in any retard friends†while at work.
Now, maybe, no more pleading with politicians to try to make them understand that these are human beings. With the right to dignity. And the dignified life that can be achieved, partly, through work…or through any other endeavor at which we may contribute.
Now, maybe, no more having to explain to School Administrators the most fundamental truth: that our children have a moral and legal right to be educated to the furthest extent of their abilities and desire just the same as all children.
Now, maybe, somewhere a Mom and Dad might be able to sleep a little easier knowing that their son or daughter will, after all, be given an avenue through which they can become a little more like the rest of us. Even though we know that, they already are.
Now maybe, just maybe, we can all better uphold Mr. Jefferson’s great, profound proposition.
John Ruskin once wrote, “The highest reward for work is not what we get from it…but what we become by it.â€
What becomes of the people who derive comfort and sustenance for the fight (and make no mistake, the fight for acceptance of ourselves as ourselves goes on) from stories like those posted here?
It seems that a profound and shining thing has been drawn upon on VH 1's canvass.
And one of them is hope.
Thanks, VH 1
Steve McKenna
Basking Ridge, NJ
