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Mother's journey with autism is filled with
tears, angels and tiaras
We had packed her
favorite snacks, her favorite videos, and cranked up her favorite
tunes in my van as we drove to the weekend camp. But when we rolled
her suitcase into the lobby, the tears began.
She might as well have
reached in and ripped out my heart.
There is nothing more
agonizing than seeing your 16-year-old daughter's eyes tear up,
especially when she can't tell you what's wrong.
Words elude my Madison. Although scripted phrases convey many
of her needs and wants, her feelings are not easily expressed.
Fourteen years ago,
autism robbed her of the full language that others enjoy. Each
utterance is a struggle for her. For me, it's a precious puzzle
piece, a clue to the mystery of what's going on in her mind. My
problem-solving attempts began.
"What's wrong, Madison? I asked gently.
More crying, this time
with sobs.
"Madison,"
I prompted her. "Say, 'I want ...' "
"I want," she repeated
with a blank stare. The tears kept coming.
"Madison,"
I redirected. "What's your schedule?"
"First, Mommy's van,"
she sobbed.
"Then," I prompted
again.
"Then," she paused,
struggling.
"Camp and friends," she
finished, still crying.
"That's right, Madison," I affirmed and began rubbing the
back of her neck.
The sobs quieted as I
stroked her hair. She leaned forward, pushing her chest into her lap
for pressure that comforted her. The tears made no sense. She loved
camp.
Then a camp counselor
joined us. Madison released my hand
and reached out to her. The crying stopped. "Do you know Madison?" I asked the young woman, now a
certified angel in my mind.
"Yes, I'm Emily."
Madison
stood up, grabbed Emily's hand and nearly skipped to the waiting
area.
"Bye, Madison," I called after her.
"Bye-bye, Mommy. See you
later," she boomed back, in her best Barney-of-purple-dinosaur-fame
voice.
Amazing! Emily rated Madison's famous Barney voice, the deep
musical voice she uses when life is good and she is happy. Smiles
melted all traces of tears.
My heart survived
another crisis, the daily task of many with a child with autism.
Autism is a masterful
foe, grabbing hold of dreams and expectations with its unpredictable
course and unknown cause. Outcomes are so wide-ranging that parents
become ravenous consumers of information about treatments,
therapies, and programs.
When we find success, we
feel compelled to share our good fortune. In 2000, a group of
parents founded Pathfinders for Autism, a Baltimore County-based
nonprofit to help us share what we have discovered. Our numbers and
needs have exploded.
Since 1993, there's been
a 2,780 percent increase of children with autism, reported Maryland
State Department of Education's Marjorie Shulbank at a recent
Pathfinder event. Now more than ever, parents need to share
experiences.
Our camp leaders agree.
Sponsored by the League for People with Disabilities, these
specialized camps create booklets to share each child's activities,
challenges, successes.
On
Madison's booklet cover, she posed with a
counselor, Sean, at the "'80s Flashback Prom Night" event. Madison,
Prom Queen, sported a rhinestone tiara.
From tears to tiaras,
the journey with autism often confounds us. But we press on grateful
for those angels who take our children's hands and help us along the
way.


03/25/09, Towson
Times
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