Once Upon a Time

As a writer, I’m always looking for stories that challenge our notions of failure and success. This unfinished “fairy tale” attempts to capture a family’s journey in the face of adversity. This is by no means a traditional family picture but no less a heartening story of the sacrifices a couple has made to create a thriving environment for their child.

As always, enjoy!

The Fairy Tale

In childhood, “once upon a time” and “happily ever after” cradle the story of how life is supposed to be.

For Cary resident Rebecca Sorensen, it’s, proverbially, past midnight, and she has already lost one of her glass slippers: pressed for time on a Tuesday morning in August, she hasn’t been able to clean her living room yet and the weight of her household responsibilities is more real than any light, airy dancing at a dreamy ball. Still, she is determined to talk about Raimee, her nine year-old, son.

In her arms fidgets two year-old son Mason who is crying and not acting like himself. He is whimpering even as she puts him down to watch his favorite Sesame Street video; he needs his Mommy, already nine months pregnant. What should she do? She picks him up; soothes him, and apologizes for the interruption. Suddenly, Mason gets sick over her shoulder. Rebecca apologizes again as she carries him away, and the interview ends.

Keith and Rebecca Sorensen didn’t have any other friends with children when they had Raimee; so, like most first time parents, they learned as they went. But when Raimee was a toddler, Rebecca began getting together with a friend and her young daughter. Naturally, they compared the two. The two children behaved differently, but different genders are just that: different. She shrugged. Boys will be boys.

Unabated, Keith and Rebecca Sorensen’s dreams unfolded: Maybe, we can play ball with him in the yard; watch him run onto the football field, as he straps on his helmet during a substitution, or enjoy picnics in the park and playtime with other families. And what school should we send him to?

Then, the staring spells began. And why is he walking on his toes all the time?

Keith and Rebecca took Raimee to their pediatrician, and the pediatrician referred them to a specialist. “I’m sorry,” he said. “Raimee’s autistic.” And gave them a book about autism, describing why he was sorry.

There’s no hope, Rebecca kept thinking over and over the next few years as she despaired to the depths . . . her journey had begun.

Holland

They were in route to Holland. Emily Perl Kingsley, mother of a disabled child, likens having a disabled child to taking a trip to Holland. Rebecca reads from Kingsley’s story:

“When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy, and you make your wonderful plans. The Michelangelo David. The gondolas in Venice. After months of eager anticipation, the day finally arrives—several hours later, the plane lands. You’re in Holland; the stewardess notifies you. What do you mean Holland? I signed up for Italy. But there’s been a change in the flight plan. You’ve landed in Holland, and there you must stay. They haven’t taken you somewhere horrible, disgusting, filthy, and full of pestilence. It’s just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you never would have met. It’s slower paced than Italy, less flashy than Italy, but you begin to notice that Holland has windmills . . . and tulips . . . Rembrandts . . . But everyone you know is coming and going from Italy . . . and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say, ‘Yes, that’s where I was supposed to go. That’s what I had planned.’ And the pain of that will never go away . . . But if you spend your time mourning . . . you may never be free to enjoy the very special, the very lovely things . . . about Holland.”

Rebecca weeps as she reads Kingsley’s story, then, composing herself, apologizes. “I’m nine months pregnant.” Keith’s eyes tear, too, as he describes the day Raimee was diagnosed. After the specialist said how sorry he was, Keith went online to read more. All he remembers is a picture of a little boy with autism.

“I first saw a picture of a kid playing on a playground; he was playing in a sandbox, sitting by himself, and that is exactly what Raimee did. There was this big emptiness like he’s going to be alone. All these kids were playing together; there was this camaraderie among them, and then this kid playing by himself. The boy was outside of it, by himself, and that was Raimee.”

The flight to Holland that parents of autistic children take, arguably, is more turbulent, than the flight to Italy and is more an extended stay than jaunt. “These parents face a black hole,” says Renn Carroll, a speech pathologist in North Carolina’s Columbus County public school system.

Part of that black hole is the vast amount of time, energy, resources, and finances that consume parents and care givers. Over the last seven years, Rebecca and Keith spent over $140,000 for Raimee’s therapies, emptying their savings accounts, running up their credit cards, and borrowing from family members. The amount the Sorensen’s spent is no anomaly. Tuition in schools specializing in autism can run upwards of $40,000 a year.

“We decided this is going to cost us big bucks,” Keith says. “And then we asked ourselves, ‘what are we prepared to do?’”

They shifted priorities, living in a rundown section of Edgewood, Maryland, with Keith, a CPA, driving a beat-up 1992 Chevy Cavalier without air-conditioning. There was a running joke about his car, he says, in his office, coworkers ribbing him as they upgraded cars, homes, and, what else—trips. Rebecca and Keith felt that living at a “lower” financial status was worth the trade off because they were providing Raimee with proper treatment.

“Early detection and treatment are vital for autistic children.” Carroll says. Parents know their child, and they are their best advocate.” If your child is diagnosed autistic, Carroll says, a parent’s role is also vital “because every professional looking to help these families looks at the disability differently. There are plenty of evaluative services that assess from a multi-disciplinary approach, but typically, the therapeutic options are not as holistic.”

In defense of professionals in the field, Carroll says that there is a lack of education and training among many of them; that the broad range of functioning on the autistic spectrum, poses problems for making a uniform treatment plan for the affected child.

“Parents need to know the signs,” she says. She stresses the following as potential signs: your child’s lack of pointing and waving, lack of sharing interest with others in what they are doing, willingness to seek approval, lack of vocalization, and excessive fears, among others. She says that there is a misconception that autistic children are not affectionate, when, in fact, their preoccupation with their fears often compels them to be extremely affectionate with their caregivers.

Riding the Wave

The Sorensens continued to suffer from the lingering effects of jet lag from the trip to Holland, but they soon found promise in the foreign land.

When Raimee was four, he attended the Kennedy Kreiger Institute, a pediatric affiliate of Johns Hopkins with an autism specific unit. The program did little for Raimee, Rebecca says, but they saw a shaft of hope through an observation window at the unit, as they observed some autistic children thriving in their environment. What in the world were the parents doing? Applied Behavioral Analysis (ABA), the children’s parents said. The parents were administering this therapy outside of the Kennedy Krieger Institute. Since, both treatments were prohibitively expensive, they were forced to choose between the two. They stuck with ABA and the Lovaas method, hiring a consultant to fly from New Jersey who in turn trained a team of local college students from Loyola College in Baltimore to administer the program to Raimee. They did the Lovaas program for about a year then switched to a Verbal Behavior model, a different application of ABA.

“When he started Applied Behavioral Analysis,” Rebecca said, “he did fantastic. He was able to identify colors and make more gains.”

Keith and Rebecca found relief, emotionally, too, as they began to access a network of parents through Families for Intensive Autism Treatment (FIAT), a support group that met in Silver Spring, Maryland. Despite having to make a 120-mile round trip to attend FIAT, they got answers, and, took charge.

“We went from poor me,” said Keith, “to an aggressive position. Our mindset changed from what we didn’t have to: ‘we need to do this,’” after they marveled at the knowledge of every day parents who sounded more like medical professionals and thought that they could do the same.

As Rebecca learned, she began to tailor-make therapy and educational programs for Raimee. As she and Keith have helped Raimee make progress, she says there are a few common mistakes that parents make.

“You need to treat them like they are normal kids,” she said, “and not let them get away with horrible behavior and say it’s just because they are autistic that they are behaving that way. People still have to be around your kid so you have to set boundaries and in that way treat them the same as other children.”

It bothers her, too, when parents talk bad about their autistic child, and the child is right there. “They usually understand, and it affects them negatively.”

“The worst thing you can do is let their disability get to you and overreact,” Keith said.

On their way back from taking Raimee to a Surfer’s Healing program for autistic people, they observed a parent berating his child in the parking lot of an Applebee’s.
Later, the parent and child climbed into their car, covered with autism stickers. “I cried,” Rebecca said, “because I could relate to both of them.”

Rebecca also stresses that the professional and the caregiver working with an autistic person must take responsibility for an autistic person’s response to direction. She quotes noted psychologist, B.F. Skinner that “the organism is always right,” a point clarified by Dr. Vincent Carbone who said that “if a child isn’t learning, it isn’t his fault—it’s your teaching procedures and methods.”

Surfs Up
Raimee is bursting with joy at the Surfer’s Healing program at Virginia Beach. He is jumping up and down flapping his arms and giggling. Raimee’s excitement draws the professional surfer’s attention—man, he’s loving it. The surfers keep taking him back to catch more waves. The organizer walks over to Keith. “Dude you are so stoked; you should see the look on your face.” After Raimee finishes surfing with his appointed professional surfer in his allotted 30 minutes, the surfers agree to let him surf some more. Later, the surfer lets Raimee ride alone as he pushes him onto the crest of a wave. Raimee lifts himself up, stands, grins, and rides the wave to shore.

Resources
If your child is exhibiting some of the signs of autism, visit the National Autism Association’s website and talk to your child’s pediatrician.

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