SPEAK
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AUTISM SPEAKS{Fighting for the cause on my spring break}
// KELCI SHIPLEY
Stepping up on spring break. From left, Mona Saha, Lindsay Elliott, Brooke Abney, Megan Logan, Jayplay writer Kelci Shipley, Xaionn Wang and Jordan Lusnan — the members of Shipley's Alternative Spring Break group. The students traveled to Colorado earlier this year to help children with autism.
Contributed photo
My right leg had fallen asleep approximately two-thirds of the way through the court hearing. But at that moment I didn't care. Instead I was focused on the emotional testimony of the families fighting for benefits for their autistic children.
Seven members of the Colorado Senate Health and Human Services Committee sat in front of a map of the state's rugged terrain, each accompanied by six-inch stacks of material put together by us: seven students who were also fighting for the cause. Our packets were full of colored charts and graphs, illustrated with the pain and emotion felt by those afflicted and associated with autism.
If the Autism Insurance Bill was to pass, children with autism in Colorado would receive insurance coverage for the speech and rehabilitation therapies vital for their development. Although expensive for insurance companies, this bill would give autistic kids a better chance to live an independent life in which teasing, torment and torture weren't daily occurrences.
The children's fate lay heavy on our minds and in their families' hearts,
A courtroom drama isn't usually a college student's idea of a vacation, but there I was on an Alternative Spring Break. Six other KU students and I had been assigned to the Autism Society in Denver, a nine-hour drive away in our silver van crammed with pillows and backpacks. I sat in the back during the ride, mostly staring out the window as my iPod shuffled.
I hadn't expected to be there. Three months earlier my application was turned down. After getting the e-mail that informed me I wasn't going, I realized how much I wanted to go. I wanted to think about other people instead of myself for a change. I ended up replacing someone else who couldn't go and the original heartbreak humbled me, making me appreciate the trip even more.
We began working for the Autism Society doing organizational jobs such as clearing clutter from desks and entering program feedback into spreadsheets. Although the work wasn't exciting we knew that the people at the society appreciated our help. I valued my experience more as the week progressed and I discovered the emotional toll the disorder takes on families.
One night our coordinator, Tom, took us to hear families speak to city officials about their need for change. Columbine High School in Littleton, Colo., was an cerie setting for testimony from parents whose children are often mercilessly bullied. I sat on a round, white plastic chair that swung out from a standard eight-person cafeteria table, watching a mother crumble as she tried to read a statement about her autistic daughter. Her
husband took over after her inability to speak, easing her firm grasp on the tattered piece of paper. His hands shook as he continued to tell tales of abuse and teasing afflicted on a daily basis, his voice stuttering as tears crept into his eyes.
Every family we interacted with had a story of pain, struggle and financial debt, challenges I got a taste of when we babysat for a family with three daughters, one of whom has Asperger's syndrome, a form of autism. The mother described the disorder as making her daughter Calyx overly "hyper" and "unable to express her thoughts."
While the parents went on a much-deserved date we split up into teams: those who would watch and entertain the girls and those who would help clean and fold the mountains of laundry that littered the floor of their rooms. We made neat stacks of Disney princess nightgowns, Dora the Explorer T-shirts and countless numbers of pink dresses.
As I was folding a pair of purple pants, one of
my group members barged in, looking for a safe place to hide from Calyx during a game of hide and seek. As Calyx neared closer to "ready or not," my group member threw herself behind the bed, pulling down blankets and pillows for disguise. "I'm exhausted," she groaned.
I wondered how the parents did this every day, along with work and other grown-up priorities. I felt happy we could provide a night's relief.
Seeing and sharing the immense responsibilities of the families in the smallest way made our group come together. Sitting in the courtroom, I could feel our collective tension. We believed so much in our efforts that anything less than a positive outcome seemed unthinkable. These families needed this to survive. Betty Lehman, director of the Autism Society and a KU graduate, finished off the testimony, speaking on behalf of the 20-plus families who didn't have time to narrate their children's agony.
The gavel struck. It was time to vote. There
were three ayes and three nays. I couldn't breathe
My chest was going to explode.
Betty Boyd, the chairwoman of the committee and the toughest to convince, finally uttered aye relenting to the persistence of parents, advocates and seven students who a week before didn't have any attachment to this piece of legislature. We all beamed with pride, knowing we had a part in helping this pass on to the Colorado Senate Appropriations Committee.
The seven of us kept in touch frequently after the hearing, getting updates from our former coordinator about the progress of the bill in the House and Senate. The day we found out that the bill was being signed by the governor of Colorado I felt like I did back in that courtroom. I felt the same relief, especially for the weight being lifted off of the families for whom I'd grown to care so much. JP
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