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Asperger’s Disorder:
A Mother’s
Perspective
Finding
out your child has Asperger’s
By Dana Cacchione
When this whole episode began, my
father called me a hero, although I didn’t understand why. I was angry,
fearful, sad, and snapped at everyone. These qualities are definitely less than
heroic, less than motherly.
Discovering that your seemingly
perfect child has a devastating developmental disability changes you in a
significant and utterly profound way. You hear things such as, “It’s
mild; it’s not that bad,” “He’ll outgrow it,” and
“He’s such a good boy” from your friends, and you want to
believe it. Then from the professionals you hear things like, “He’ll
always have problems,” “He needs a full-time intensive program to
develop appropriately,” and “He needs exposure to typical
children.”
My heart broke at the implication
that my son is so far from typical that he needed extensive, special treatment.
With all this help and advice to rely on, I never felt more alone, more misled
or more misunderstood. I had read of other children surviving autism, and early
on I vowed that in some way, my child would overcome the similar, but milder
version of Asperger’s Disorder.
For a while I understood how Hester
Prynne felt, wearing that scarlet letter around her village. It was as though
someone had tattooed the same red “A” on my son’s forehead. I
suddenly realized other children avoided my socially awkward son, and their
parents fearfully protected them from his wild attempts at interaction. I
noticed that people, including my best friends, could no longer utter the word
“autism” in my presence. It was the awkward search for words
typically relegated to the presence of someone who had recently lost a loved
one.
My life wasn’t that horrible. I
knew it wasn’t, but on many days it felt like it was. A friend asked me,
“What do you have to do that most people don’t?” I laughed for a
second at the hilarity of the situation. My life no longer represented normal
in any way shape or form, and although friends recognized the adversity that
had been bestowed upon me, they in no way whatsoever had any tiny fragment of
an understanding of how or why. For them I was happy for their unending
supportive words of hope, I will be eternally grateful.
People often talk about wearing many
hats in motherhood: chauffer, chef, referee and administrator. For a parent of
a child with special needs, the list grows exponentially with titles such as
physical therapist, occupational therapist, speech therapist, play therapist,
counselor, psychologist, physician, pathologist, special educator, advocate,
interpreter, attorney and many more.
Once-casual, fun-loving parents now
need to spend hours teaching their child how to play with his siblings, how to
look someone in the eye, what fear means, and how to greet a visitor at the
door. My greatest aspirations for my child were that he would express some
interest in his sister, play appropriately with toys and have at least one
friend.
I used to dream of the day my son
would be more interested in his cousins than his cousins’ toys, more
excited by human beings than television, and capable of focusing his attention
long enough to engage in a game of Candyland or Uno. These aren’t
exceedingly high standards, but they are similar to the aspirations of most
parents of children across the autism spectrum. We are often told to lower our
standards and embrace their differences, and we are encouraged to accept an
indefinite future of solitary weirdness. For me, this was all unacceptable. I
knew there was a boy inside trying to escape.
Like all parents of children on the
autism spectrum, I daily faced a strange juxtaposition within my child. He was
loving yet so distant, lovable but so difficult, brilliant and delayed. He was
once so immersed in his own world that he didn’t always notice a person
entering the room, a new toy in the house, or bumping his head on a counter
while walking through the kitchen. His progress ebbed and flowed erratically,
with tiny glimpses of “normalcy” poking through that propelled us
forward.
Most recently my son has reached all
of the milestones that were once just a dream. He is making strides socially,
cognitively and emotionally, plays with familiar family and friends, enjoys
games and can pedal a bike with training wheels. His remarkable success is
mainly due to alternative treatments such as dietary restrictions, vitamin
supplementation and medication to treat underlying and formerly undetected
illnesses. My family has made many sacrifices to locate and afford such
unconventional treatments. We have altered our lives in innumerable ways, and
spent thousands of dollars seeking treatment, guidance and appropriate
nourishment. It has been a very long, frustrating, difficult, expensive
roller-coaster ride, with an amazingly bright light at the end of the tunnel.
Not only is it fully rewarding and
heartwarming to have a boy who displays love and affection for his family,
expresses interest in friends and enjoys typical childhood games, the long
journey that brought us here has taught me so much more: Life is not a fixed
entity, disabilities aren’t always eternally disabling and beauty lies
somewhere between a mundane reality and dreams. I now have a better
appreciation of the common interchanges between a mother and a child, and I
delight in such simple things as my son greeting me with a “Good
morning,” hugging his sister or asking to invite a friend over to play.
For most, these are inconsequential words; for a mother of a “child on the
spectrum,” these are amazing gifts.
But we haven’t made it yet and
struggle each day to further my son down the road to recovery. He continues to
have significant delays in social skills, difficulties with sensory
information, becomes overwhelmed in large groups, and requires a variety of
therapies and special education to function in school.
Choosing the right balance of
support, expectations, teachers and therapists, and environmental modifications
is difficult and daunting. Facing the reality of your child’s difficulties
is continually devastating.
In the face of challenges, fears and
obstacles of epic proportions, there are always options. You can choose to
embrace dysfunction and believe in a predetermined future, accepting a
less-than-desirable life. When it was my child’s future at stake, I chose
to fight and utilize every resource, treatment and restorative cure imaginable
so that someday I could look into my grown son’s eyes and honestly say,
“I did everything I could to help you, Honey.”
I am no hero. I am a mommy.
********************************
Dana Cacchione is the mother of two children, who works part
time as a school psychologist. She enjoys writing in her spare time, and
is passionate about spreading the message that autism spectrum disorders are
treatable.
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