This article was originally published in Towson Times.
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.
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