Saturday, April 18, 2009

Mom shares glimpse into world of autism

News brings life changes

By Jayne Boykin - The Duncan Banner

DUNCAN — Having a child diagnosed with autism is somewhat like a traveler who plans a fabulous vacation in Italy, only to hear the flight attendant say upon landing, “Welcome to Holland.”

Edee Girod, whose son, Rusty, is autistic, treasures a yellowed newspaper clipping she found years ago that expresses what many parents of autistic children feel:

“Holland? What do you mean, Holland? I signed up for Italy! I’m supposed to be in Italy. All my life, I’ve dreamed of going to Italy.

“But there’s been a change in the flight plan,” the flight attendant explains. “You’ve landed in Holland, and there you must stay. The important thing is they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine and disease. It’s just a different place.

“So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met ...

“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.’

“The pain of that will never, ever, ever go away, because the loss of that dream is a very significant loss.

“But if you spend your time mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.”

When Rusty was about 3, Girod realized her son was falling behind other children his age. Although his motor skills seemed normal, and he liked to ride his bike like other children did, there was something not quite right. But she had no idea at the time of the voyage of tears and laughter upon which her family was embarking.

At a child study center in Oklahoma City, Rusty was diagnosed with a handful of conditions, including retardation and autism, and other terms unfamiliar to Girod at the time.

“There was nowhere to turn in those days. People didn’t talk about autism like they do now, and everything we did was breaking new ground. I found maybe three paragraphs on autism in a library book. We didn’t have the Internet back then, either. I thank God every day that we have been able to find the teachers and caregivers and other resources that have helped us with Rusty. Autism is a different world, slower-paced and really unique.

“God has blessed us with the ability to see the uniqueness of Rusty’s world and to live in it with him. Rusty has a lot to offer, but you have to get on his level. You cannot expect him to come out and meet you on your level,” his mother said. “Like the traveler who planned to go to Italy and wound up in Holland, no one plans to have an autistic child, but if we had spent time mourning the fact that he is different, we would have missed out on knowing the wonderful person that he truly is.”

Rusty attended school in Lawton his first year, then transferred to Duncan, where he completed 12 years of public schooling with teachers who provided the structured environment his condition requires. He enjoyed playing basketball and participated in Special Olympics for a number of years.

The middle child of Edee and Mike Girod’s three children, Rusty likes to be with his close-knit family — sister, Mika Savage, brother, Daimon Girod, and his six nieces and nephews, all of whom live nearby.

“He loves babies, and when we’re out in public and he hears a baby cry, he gets very concerned about it,” his mother said.

Rusty enjoys listening to music, and has a collection of favorite songs he listens to over and over again. He can sing most of his favorites from beginning to end, humming a bit when the words escape him, then picking up the lyrics again further along in the tune. He exhibits many of the traits of a savant, as portrayed in the film, “The Rain Man,” and can tell a visitor who hands him an unmarked cassette tape not only what the tape is, but what song is queued up to play next. If the tape is then placed in the cassette player, the designated song does, indeed, emanate from the player, just as Rusty predicted.

Autism is an ever-changing state. In his younger days, Rusty exhibited some compulsive behaviors that have now subsided, only to be replaced by others. Now 38, his needs are different from what they were when he was a child, but with autism, the needs of the person affected can change almost with the speed of light, and families and caregivers must be constantly in tune with those changes.

Rusty has a collection of well-loved stuffed animals and keepsakes, and decorates his world according to what seems right to him. He gets agitated when objects are moved or changed, even to dust them, Edee Girod said.

“He has a need for sameness. What he wants. He appears to live in isolation, but he loves to get out in the world, too. He loves to ride escalators and Ferris wheels, though with the back problems he has developed, he can’t do some of the things he likes to do any more,” she said.

Asked his favorite thing to do, Rusty said, “Ride Daddy’s boat!” with a big smile.

He also listed his favorite restaurants and what he liked to eat there. He can communicate his thoughts and wishes, but on his own terms. He can spell some words, including his name, but doesn’t like it when others spell words in front of him. Unlike many people with autism, who do not like being touched and who will not make eye contact with others, Rusty looks a visitor in the eye and extends his hand to shake.

“He speaks ‘Rusty.’ People who are around him for very long learn to speak fluent ‘Rusty.’ Even his brother’s friends who visit with him know how to speak on his level and he can communicate very well at times,” Girod said.

Other days are more difficult, and Rusty retreats into an inner world that no one else can fully experience. He laughs, he cries, he rocks to and fro in his chair and makes an assortment of noises and sound effects that have meaning only to him in that moment. It is those times that can try the patience of his family and his caregiver, Annette Bounds, who was featured in Part 2 of this series.

“God has blessed us with Annette. She is very graceful and forgiving of the things Rusty does sometimes. It truly has been our deep faith that has gotten us through the bad times and allowed us to see the uniqueness of Rusty’s world. It takes a lot of faith to keep going. If we didn’t have God in our lives, I don’t know what we would do,” Girod said.

She encourages any parent who suspects a child has a problem to speak to his or her family doctor as soon as possible. The doctor can then make referrals for further testing and treatment. If the child is then diagnosed with autism or a similar disability, she implores parents to reach out to others for the support and encouragement they will need.

“Autism is a lifelong thing, and the earlier the diagnosis, the better. Early intervention can help keep the whole person whole — not allow him to slip through the cracks — and can help the family through the difficult times. I would encourage any parent who would like to talk about autism to call me. We’ve been in insurance and real estate in Duncan for many years. People can find us easily, and I would be more than happy to share experiences with them,” Girod said.


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