Happy Anniversary: Ten Years on the Autism Spectrum
Saturday, August 13, 2011
"I never look back, darling, it distracts from the now."
~ Edna Mode
comes to dredging up things from the past I am definitely with the fabulous
Edna Mode: I would rather not look back. But as the
nation prepares for the tenth anniversary of the 9/11 terrorist attacks I’m
forced to reconcile with the fact that it’s the anniversary of another event
that shook me to my very soul… the tenth anniversary of my induction into the
ranks of Autism Moms.
many of you have been shaking your heads incredulously when recalling that
horrible day in September – “Has it really been ten years?” I am just as amazed at how quickly time seems
to have flown since the day we received our son’s diagnosis and my entire world
came crashing down like those two mighty towers in Manhattan.
*** *** ***
and I are touring the “special” school. Billy has just turned three and the
word Autism has yet to be mentioned -- the interdisciplinary team of therapists
and educational specialists has carefully avoided it for months while we waited
for Billy’s appointment with a pediatric neurologist. Now, Ed and I struggle to make sense of what
she vaguely diagnosed as Pervasive
Developmental Disorder. She is unable to give us a prognosis. “Put him in a
good school,” she says brusquely. “If you get pregnant, let me know if you want
to do any genetic testing.”
I was too
numb to ask why.
the tour and the woman who has been assigned as Billy’s case manager prattles
on about something called Applied Behavioral Analysis and the school’s
innovative horticultural program. She
asks if I think Billy would like this school. How should I know? I don’t even
know what his favorite color is -- or what he wants for Christmas. He can’t tell me anymore.
really want to say is, “I don’t care where he goes to school, just give me back
my child; the one who used to play pretend and sing his ABCs with Big Bird.”
But I falter.
want him to…to…”
briskly and adds, “You want him to be able to function in society.”
It’s a real
sucker punch. Unintentional, but it floors me. “…to be able to function in society.” We thought we’d be talking
about our child succeeding. Why all of a sudden were we talking about him
I knew Billy
had some kind of learning problem, but I had always imagined it could be
“fixed”. This woman is the first to clue us in to a harsh reality: he will live
his life functioning on the edge of society. He will never have a career…get
married…have children of his own.
My God! This
can’t be happening…
first true realization of what our son has lost -- what Ed and I have lost --
and I fight off a sudden wave of nausea. Our perfect little boy is dead. Case
Manager is lucky I don’t vomit on her shoes.
*** *** ***
*** *** ***
almost too much for me to bear; I found myself falling into a black hole of
anxiety and despair. One day as I sat on
the edge of my bed staring into the open closet where my husband, a police
officer, kept his guns locked in a case, the barest whisper of an idea floated
across my conscious mind. How easy it
would be to unlock that case, pull out one of the loaded guns, and simply shoot
my brains out! It would be so easy; so very easy...
shook myself. I literally shook myself out of it. That whispery
little thought scared the hell out of me… I called my husband and told him he
needed to get all the guns out of our house, NOW. Then I called my doctor to
get a mental health referral. Enough was enough.
*** *** ***
I refer to the
next few years as my “Dory Period”
"Just keep swimming. Just keep swimming. Just keep swimming, swimming, swimming. What do we do? We swim, swim, swim!"
like our friend Dory, I cannot recall many of the details. I think I may have
subconsciously blocked out much of the anguish and grief. We did get Billy into
that very fine school; the early intervention with ABA and Speech Therapy
seemed to do him the most good. The teachers and therapists were amazing.
new parents on the Spectrum we cast about for any and all therapies that might
help “save” our son: special diets, vitamin supplements, pet therapy… we even
considered chelation, but by then it had become clear that that God would not
answer my fervent prayers for a cure.
"The gift of Life is thine."
~ The Blue Fairy
rephrase that. My prayers were answered.
The answer, unfortunately, was NO. There would be no miracle for my Billy. When
he was five years old a different (read: more sensitive and understanding)
pediatric neurologist told us what we already knew in our hearts. The vague
pervasive developmental disorder my son had to live with had a new name:
*** *** ***
I began this
post by telling you that I don’t like to look back and that’s true… I really
don’t. I realize that because of my experience I have
been given the gift of insight when it comes to parenting a child with autism.
I try to share that here, but I still have a lot to learn, so I’ve decided to
read a book that was written in 2005 during a time when I was avoiding all autism
books like the plague. (I couldn’t bear to read one more story about how some
other mom “cured” her child.) I’m reading Ellen Notbohm’s Ten Things Every Child With Autism Wishes
You Knew… which I thought was
appropriate for a tenth anniversary! I’ve
been flipping through it and so far, it seems to be inspiring and uplifting as
well as informative.
next several weeks I’ll be discussing the book here, chapter by chapter. I’d
love to compare my experiences and observations with the author’s. Hopefully
you’ll join me and add your two cents in the comments section. I’d love to read
Enjoy your Saturday; I hope you have a great weekend!
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