Friday, April 29, 2005

Unlocking the door to autism - One family chronicles its struggles and triumphant journey

By Linda Maraldo

Correspondent - Chicago Suburban News

The crowd at a local 2003 Little League All-Star baseball game was particularity excited about one player, a rookie who was leading the league in hits that year.
"What a sweet swing!"
"Who is that kid?"
"A rookie? I can't believe it! You're kidding!"
Those were the comments Rhonda Brunett heard about her son, Jordan, while walking through the crowd that summer day.
"It was like a miracle. They were talking about my child," she said.
Rhonda and Rick Brunett of Carol Stream never put limits on their son, Jordan, a sixth-grader at Jay Stream Elementary School in Carol Stream, but there was a time when he couldn't follow directions let alone play All-Star caliber baseball.
Jordan is autistic, a complex developmental disorder that affects social and communication skills. He was diagnosed at age 3.
To educate others about autism and the reality of raising an autistic child, Rhonda published "From Autism to All-Star" in the fall of 2004 by Specialty Publishing Co. in Carol Stream. The book includes observations and personal journal entries from Rhonda as well as excerpts from friends, family members, teachers and parents.
Rhonda actually began writing a journal while pregnant with Jordan, intending it to be a gift for him once he was older.
"I never intended to make my journal a book until I saw familiar tendencies in my friend's son and said, 'I can't let this happen, I have too much information, I have to get the word out,' " recalled Rhonda, stressing early intervention with autistic children is crucial.
Rhonda knew her journal had documented the warning signs and the efforts that helped Jordan assimilate into grade school, become socially interactive and a star baseball player.
"'From Autism to All-Star' is to be shared with parents and teachers to educate them, with (the) hope that my experience will give others hope and strength," Rhonda said.
Warning signs
For a new parent or someone who has not been around many children, not recognizing red flags is not understanding what you are seeing, Rhonda explained.
"Autistic children often develop normally through the first few years. Then they begin to display certain behaviors. It was confusing," said Rhonda.
For example, she would ask herself why Jordan could memorize all the presidents, but could not verbalize: "Mommy, I want a cookie."
Jordan played with toys differently. Instead of racing his toy cars on the ground, he would pass them before his eyes as if he were taking their picture. He also could be found running around the block 10 times or staring at a car tire for 40 minutes.
He paced endlessly, fixated on objects and showed repetitive movements. Jordan was "tirelessly repetitive," according to Carla Crosby, a friend of the Brunett's. Jordan couldn't communicate, which led to frustration which then led to tantrums.
"I don't know what is wrong and I don't know how to handle it," Rhonda wrote in her journal. She often felt very alone. "It's hard for the average person to understand what it's like to raise an autistic child," she wrote.
By 3 years old, Jordan was having problems if he was pulled from a routine. "A broken routine for Jordan made everyone who was involved in Jordan's day difficult, including Jordan," wrote his godfather Mike Muro in "From Autism to All-Star."
The Brunetts heard comments about his behavior from family members, but it was Crosby who suggested Rhonda take Jordan to a neurologist. Rhonda brought a video that showed Jordan's idiosyncrasies to the neurologist and Jordan was diagnosed with autism.
Taking action
Rhonda knew almost nothing about autism, only what she had seen in the 1988 movie, "Rain Man," and what she read in two nonfiction books on the subject.
Rhonda instinctively did some things right, such as the constant use of flash cards. But she also took the advise of others. "I did whatever anyone suggested: the doctors, the teachers, friends," she said.
Neurologist Charles Swisser of Children's Memorial Hospital in Chicago told the Brunetts by third grade Jordan would lose most of the outward signs of autism. "Keep the Kool-Aid jug full," Swisser told them, referring to the many children who wanted to hang out with Jordan.
Even if Jordan wanted to play alone, he needed to be with children. Autistic children will mimic other children, so they will learn by having playmates around them.
Rhonda took Swisser's advice and surrounded Jordan with playmates.
"We were blessed with a wonderful neighborhood family of children who loved Jordan and treated him like another brother," said Rhonda.
Autistic children need consistency, much attention and socialization. Jordan had to be taught social skills, how to share toys and play with other children. Rhonda explained they had to take the toy away from Jordan and deal with the tears or tantrums and try again until he learned he had to share. Absolutely everything is a process, she added.
Autistic children also need encouragement and positive feedback. They are sensitive to loud sounds, so yelling at them does not help, said Rhonda.
One of Rhonda's goals for her son was to teach him compassion, which she showed him first-hand. The way to teach respect is to give it, she said.
Breaking ground
Rhonda was not afraid to write she was tired or frustrated in her personal memoir. One particular breakdown she had convinced her that Jordan's school needed to provide him with a full-time aid.
On Jordan's first day of school in the Individual Evaluation Program in Community Consolidated School District 93, Rhonda could not get her son dressed. He would not cooperate and Rhonda found herself outside crying. A neighbor ended up getting Jordan ready for school.
"I thought I was a terrible mother. I couldn't control my kid," Rhonda said.
"It was maybe this state of mind dealing with Jordan and his difficulties that made me demand a full-time aid for my son," Rhonda wrote in her book.
One in 50 families daily will have a child diagnosed with autism, and Joan Huchthausen, assistant superintendent of District 89, confirmed teachers are seeing an increase in children with autistic tendencies and Asperger's disease, a mild form of autism. Huchthausen stressed parents are the first and life-long teachers, and schools cannot do everything.
Rhonda said it is important the teachers know the autistic child's positive characteristics and set the tone to prevent classroom bullying. Autistic children process information slower than other children, which is why it is important for them to have an aid to keep them on track, she pointed out.
Rhonda developed a method she calls the triangle of constant communication with the classroom teacher, speech teacher and herself, so there is triple reinforcement to Jordan's learning.
To educate more teachers about autism, Rhonda, her friend Wendy Williams, who has a child with Asperger's, and teachers from District 93, created a PowerPoint presentation, to help teachers recognize the red flags and develop appropriate teaching strategies and suggestions for the classroom.
While transferring her journal to manuscript, memories of Rhonda's own unpleasant school experiences started to surface, which motivated her to make a difference.
"I had a hard time understanding concepts. I couldn't focus. I would space out. I barely made it through school. I just struggled through school," she said.
Rhonda suspects she had attention deficit disorder long before it was recognized. "I was pushed through the system. I didn't learn a lot. I said, 'I'm not going to let that happen to my kid.' I wanted Jordan to enjoy school," Rhonda said.
Where are they now?
Rhonda said teaching or helping other children is something she is thinking about for the future. She has already given presentations at Roosevelt University in Chicago, to special education teaching students, and in the future she will target regular classroom teachers.
Jordan continues to learn. Rhonda and his speech teacher are working to expand his conversational level by having Jordan discuss newspaper articles.
Learning is still hard work. Now after an intense day at school where he needs all of his energy to focus on learning, Jordan will play ball to relax.
"We tried to let Jordan be Jordan, never wanted to change him but bring him to a position where he could interact socially," his dad, Rick, added.
For information about "From Autism to All-Star," autism information or support groups, visit www.autism2allstar.com.

1 comment:

yarrowlion said...

Why was he allowed to play? I tried signing my son (who has a mild case of Asperger's) up for Little League but they won't let him play without a doctors note saying "that your son's Asperger's will not interfere with his ability to focus and hold his attention so he may have quick judgement and reaction allowing him to be able to catch balls thrown at him and hit at him by other players. Also that when he is up to bat he can react to pitches out of the strike zone that may be coming at him so he isn't hit." We are supposed to get this from a doctor in a doctors office that has more than one doctor and my son visits once a year at the most. Why won't they let me son play? Just because I put down that he has Asperger's? (they haven't seen him play or even met him yet). If so why was your son allowed to play (I'm not saying that your son shouldn't have been allowed to play, just saying they need to make it equal to all.