Profiles in courage- stories of living with autism

Posted Friday, April 15, 2011, at 11:19 AM

Let me tell you about courage. The kind I never want to have to know.

 

Jessica Simmers lives it every day. You might have seen Jessica and her blonde hair, angelic-face little boy on the front page of the Southeast Missourian this week.

Let me take you back.

Landyn, did everything early. Jessica said as soon as he started crawling he wanted to walk.

And then everything stopped. Landyn turned 2 and he stopped talking. He grew extremely distant from other children, almost like he was ignoring them. He was obsessed with routine. He had to eat breakfast as soon as he woke up. He wanted to go outside, no matter the weather, or he would become agitated, cry inconsolably.

About seven months ago, Jessica's finance saw a program about autism and noticed startling similarities in Landyn. They did their research, mostly online. Of the 15 basic symptoms of autism spectrum disorder, Landyn exhibited 14.

Jessica took her son to the Southeast Missouri State University Autism Center for Diagnosis and Treatment in January. The diagnosis came down fast, and it was just what this young mother suspected: autism.

"I was upset but relieved," she told me. "I knew what it was, and I knew how to help him."

Help is on the way. It appears Landyn, 3, Jessica's "blessing, is getting the care he needs through a suite of services at the center and beyond. And the earlier treatment the better, reams of studies on autism and plenty of experience teach us.

Dr. David Crowe, of Cape Girardeau, has felt the heartbreak that autism brings.

His son, Taylor, was a happy, joyful toddler, advanced in speech and development before he shut down. He lost virtually all of his language skills by the time he was 3 1/2.

Here's the part that really hits me where I live as a dad, and as a son of a father whose ability to speak was robbed by stroke.

"One morning we were having breakfast, and Taylor said, 'Daddy, my mouth won't say the words, my mouth won't say the words,' and he started crying," Crowe said. "He was letting us know that's what was happening; we just didn't know what he was saying. Then it was gone."

Taylor couldn't stand being touched, he was impatient, he couldn't communicate and he was frustrated. He cried all the time.

"It's very difficult to put into words what it's like to have your child essentially change overnight, becoming distant, uncomfortable and unhappy after he had been a happy, joyful little child," Crowe said.

Taylor experienced what appears to be Landyn's diagnosis: Childhood disintegrative disorder. The average age of onset is between three and four years of age, although symptoms may appear by 2. Until this time, the child has age-appropriate skills in communication and social relationships.

To watch your child grow, to learn, to experience the joys of toddlerhood and then watch so much of it virtually taken away overnight is frightening beyond comprehension to me.

But the Crowe family, especially Taylor, never gave up.

Through meticulous speech therapy work, deep social connections, patience and love, Taylor, who turns 30 this year, is an artist and an author who has traveled the country telling his story, explaining autism spectrum disorders. Crowe calls him a "living, breathing example of what the human potential could do." Taylor, he said, is his hero.

"We always felt that happy little boy was locked in there, and we just wanted him back," he said.

There are an estimated as many as 700,000 children and young adults are living with autism spectrum disorder. Some cases are more severe than others, some stories don't have the kind of happier endings the Crowes experienced. And with so many autistic children beginning to come of age, experts in the field say a crisis of service and resources, too, is coming.

This is National Autism Awareness Month. It's a time to remember the people affected by this group of neurological disorders and, I believe, the courage they must have to carry themselves through to the other side of fear.

As one parent of an autistic child put it, living with autism is about patience and love.

I think it's also about a kind of strength unknown to most.

All qualities that teach us how to live and learn.

Here are some upcoming Southeast Missouri State University events commemorating National Autism Awareness Month

* The Alpha Xi Delta sorority at Southeast Missouri State University is hosting its annual Walk Now for Autism Speaks and Alpha Xi Delta BBQ on Sunday. The walk, which takes place at Capaha Park in Cape Girardeau, is open to the public. Registration begins at 8:30 a.m., with the walk starting at 9:30 a.m. A BBQ will be held after the completion of the walk at 11:30 a.m.

* The Southeast Autism Center for Diagnosis and Treatment along with Counseling and Disability Services is co-sponsoring a movie night, showing "Temple Grandin" at 6 p.m. April 18 in the University Center Program Lounge. The award-winning HBO movie, starring Clare Danes, is a story of an Autistic woman who has become one of the top scientists in the humane livestock-handling industry and is a widely-respected presenter and author in the field of Autism.

* The International Counseling Honor Society, Chi Sigma Iota, at Southeast will host a meeting on April 19 to focus on interventions and treatment for working with individuals diagnosed with an Autism Spectrum Disorder. Moore and Hébert will be the presenters for the evening.

*Autism and developmental screenings will be available on Friday, April 29, in Dexter, Mo. The screenings are co-sponsored by the S.H.O.W. Mobile (Southeast Health on Wheels) at Southeast and the University Autism Center. Families who have concerns regarding child development are encouraged to come to the S.H.O.W. Mobile for screenings. The S.H.O.W. Mobile operates out of the College of Health and Human Services in a partnership with Southeast Health. Once time, location and procedures for obtaining an appointment are finalized, information will be available on the University Autism Center website at www.semo.edu/autismcenter or by calling (573) 986-4985.