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Foreword by Raun Kaufman
Do you ever wonder why things turn
out the way they do? I do. Every so often, I ask myself
why an event in my life occurred, if maybe it had
some sort of purpose or reason. I realize that, in
the larger scheme of things, I can never really know
why events happen or if there is some sort of grand
plan for us all. I do believe, though, that each event
offers us a brand new chance to change ourselves and
our lives, whether the change is slight or sweeping.
Even if we can't know whether there is some great
cosmic reason for the workings of the world, we can
still give events meaning with what we do with them.
When I was diagnosed as autistic
(and also severely mentally retarded, with a below-thirty
IQ), my parents were given ample opportunity to treat
the event as a tragedy. The whole world saw autism
as hopeless and encouraged my parents to see it that
way too. Sometimes it dawns on me how close I came
to spending my life encapsulated inside my own head,
lacking the tools to interact with the rest of the
world. My autism could have been just another event
without meaning or explanation.
What turned it around was not a string
of events, but rather a wildly different and unheard
of perspective: Refusing to accept the age-old view
of autism as a terrible catastrophe, my parents came
up with the radical idea that my autism was a chance
- a great opportunity, in fact - to try to reach a
child lost behind a thick, hazy cloud. It was a chance
to make greatness out of something commonly viewed
as unquestionably sad and tragic. This perspective,
combined with a passionate relentlessness on the part
of my parents, enabled me to undergo a spectacular
metamorphosis and emerge from the shell of my autism
without a trace of my former condition.
When I think about what my parents
did with my autism, I see what a tremendous role we
all play in each event that confronts us. It was not
my recovery that made the event of my autism amazing
and meaningful (though, needless to say, I'm very
happy with the outcome); it was my parents' open-minded
attitude in the face of my condition and their desire
to find meaning in it regardless of how I turned out
in the end. You don't have to "cure" your
special child in order for his or her specialness
to have meaning and value. The value lies not in "results"
but in how you treat your situation and your child.
The question of what is and is not
possible has forever been bouncing around in my head.
I have definitely had a few times in my life when
I chose not to bother attempting to accomplish something
because I thought, "That's impossible."
At other times, I catch myself thinking this way and
realize that it is precisely this type of thinking
that could have landed me in an institution for the
rest of my life. If there is one thing my life has
taught me, it is that anything is possible. I don't
mean this idea in the superficial way it is often
used. I mean to say that nothing is beyond our reach
if we honestly believe that it is within our power
to reach it. I've found that I, rather than any external
situation, am my own biggest limiter.
One line that parents of special
children hear more than anyone else is the "that's
impossible" line. The "experts" showered
my parents with prognoses like "hopeless",
"irreversible", "unreachable"
and "incurable". All my parents had to do
was believe these "experts" (not a difficult
task, since these doctors had plenty of evidence to
back their opinions), and my journey would have been
over. Instead, my parents defied the professionals,
disbelieved their prognoses, and grabbed hold of the
belief that they could at least try to do the impossible,
reach the unreachable, cure the incurable.
"But your son has a devastating,
lifelong condition. He can never come out of it"
the doctors scolded.
"So what?" my parents would
reply. "We're going to try, anyway, and see what
happens."
The word expert is the misnomer of
the century. The pessimistic outlook that the "experts"
show many parents need not be taken seriously. Whatever
you've been told about the severity of your child's
condition, don't buy it. You and your child can do
a whole lot more than any "expert" could
possibly know. No matter how much evidence a doctor
can show you, it will never be enough to prove that
something is impossible. You want to know something?
Evidence is a sham. It can always be defied or demolished.
If you really believe in evidence, use it to prove
the possible instead of the impossible. (I'm on the
debating team at my college, and I've seen how evidence
can be used to back up either side of an issue.)
Many, especially the "experts,"
might claim that I am advocating "false hope."
"False hope"? What do they mean by "false
hope"? How in the world can anyone put these
two words together? When I think about my successful
academic career, my fierce tennis matches, my love
of Stephen King novels., the fantasy and science fiction
short stories I've written, my admittance to the university
of my choice, my best friends, my girlfriend, and
my complete and ecstatic involvement with life, it
occurs to me that each and every one of these is the
product of "false hope." Nothing can ever
be bad or wrong about hope. Not ever. I advocate giving
yourself and those around you as large a dose of it
as possible.
So, I bet you're wondering what this
product of "false hope" is doing with his
life lately. Well, I'm enjoying college (I'm in my
sophomore year) more than any other period of my life.
I'm having a thoroughly terrific time choosing my
own courses, living away from home, eating school
food (yum!). I take courses like philosophy, political
science, theater arts, and biology. I took calculus
during my freshman year. Definitely not my calling.
In addition to enjoying the social and academic scenes
at college, I'm also on the debating team, I take
ballroom dancing, I'm in a coed fraternity, and I'm
in a number of political groups. I recently cast my
first presidential vote after working for my candidate's
campaign. (I won't say who I voted for, but you can
probably guess.)
Here are the answers (and only the
answers) to the questions I get asked most often:
- No, I can't stand "Beverly Hills 90210."
- Yeah, I'm an excellent driver.
- Actually, I'm majoring in biomedical ethics.
Oh, my career after college? I haven't the foggiest
clue.
- No, I only spin plates during really boring physics
lectures.
- Sorry, I'm busy this Friday night.
Speaking of questions and answers,
I have talked with parents of special children from
many different countries and throughout the US, and
I've had the chance to answer scores of their questions
and ask some questions of my own, as well. They all
want the best for their child; they all have a strong
desire to help their child in any way they can. Many
of these families also see their own or their child's
situation as horrific. In addition, they want to be
"realistic" and not pretend that their child's
situation or potential is better than it actually
is. It makes perfect sense to me that parents would
think this way, but there are other ways of looking
at things that might be more productive as well as
more fun.
Personally, I see autistic children
as possessing a unique talent and ability, not a deficiency.
When this talent and ability are embraced instead
of viewed with horror, some amazing things can happen.
Kids can make leaps people never thought possible.
As for being realistic, it's not
all it's cracked up to be. Very often, I wonder how
I can be realistic and optimistic at the same time.
How can I have boundless hope and aspirations and
still keep a down-to-earth perspective on things?
Well, many times I can't. Sometimes I choose realism,
and when I do, I can always be sure that nothing that
happens will exceed my expectations. But when I choose
limitless optimism, I don't put any ceilings on my
dreams and goals, and, as a result, sometimes I get
more and do more than I ever could have accomplished
by being realistic. The telephone, the automobile,
the polio vaccine - the people who brought these things
into being were extremely unrealistic. Realism only
preserves the status quo. Nothing was ever accomplished
by a realist. Every great discovery and achievement
in history is the fault of unrealistic people. My
parents' lack of realism is what got me to the place
I am now. Consequently, I try never to tell anyone
around me to be realistic.
Sometimes, when I think about the
continuing savage violence around the world and the
pervasive racism in America, I have a hard time being
optimistic. Plastered all over my wall in my dorm
room are pictures of Bobby Kennedy, my favorite person
in history. War and racism were also major concerns
for him, but he never let the state of the world bring
him down. So when I think of the things I want to
be different in the world and I think about being
unrealistic and I think about hope, I try to keep
a quote of Bobby Kennedy's tucked in the back of my
mind: "Some see the world as it is and say, 'Why?'
I see the world as it could be and say, 'Why not?'"
You can always say, "Why not?" when you're
told you can't accomplish something. You can always
say, "So what?" when evidence is presented
against your dreams. You can always say, "It's
possible" when you have a different vision for
your child. Your potential is limitless, so don't
give up. You have more greatness than you might think.
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