Autism trailblazer to graduate Ronan High School
RONAN — Autism, the fastest-growing serious developmental disability in the United States, now affects one in every 88 children and one in 54 boys.
According to advocacy and education organization Autism Speaks, “Autism spectrum disorder and autism are both general terms for a group of complex disorders of brain development. These disorders are characterized, in varying degrees, by difficulties in social interaction, verbal and nonverbal communication and repetitive behaviors. They include autistic disorder, Rett syndrome, childhood disintegrative disorder, pervasive developmental disorder-not otherwise specified and Asperger syndrome.”
With no known cure and no known cause, the condition is characterized by intellectual disabilities, difficulties in motor coordination and attention and physical health issues like sleep and gastrointestinal disturbances.
The condition afflicts more than 2 million American citizens, and the numbers are growing. According to Autism Speaks, one autistic child can cost a family $60,000 per year.
The National Institute of Health spends only .55 percent of its budget on autism research.
Rich Janssen, a lifelong Ronan resident and involved community member, has an autistic child.
His son, Jake, was diagnosed with autism May 31, 1998, when he was 2 years old. At the time, about one in 1,000 children were autistic. That number has risen exponentially through the last 15 years to one in 50 males. One-third of those diagnosed with autism develop epilepsy. Jake is among them and was recently diagnosed with diabetes.
Even so, Jake seems like one of the happiest children you’ll ever meet.
“He’s a blessing and he’s really humbled me to what’s important in life,” Rich said. “It’s not anything arbitrary or anything that you can lose, and it’s made me much more sympathetic to those with a disability ... anyone with a disability is on our short list of going to heaven pretty quick.”
Having been integrated into Ronan schools since he was 2 1/2 years old, Jake will graduate with a high school diploma this spring and has the option to walk with his class at graduation.
“He’s been in the Ronan school system his entire education career, and the majority of the kids love him. They’re his buddy and they protect him,” Rich said. “Cody Mock, Dallas Jore — I have a soft spot for that class and those boys ... they know Jake and they care, and I’ll never forget them for that.”
Jake’s 16-year-old sister Jenna described several instances when people who didn’t know Jake or understand autism said something cruel, but Jake’s classmates stood up for him.
“I remember somebody telling me that Jake was shrieking through halls and someone said, ‘Hey, what’s up with that idiot?’ and the kids got on him and said, ‘Hey, leave that kid alone; that’s Jake,’” Rich said. “I never had a worry in Ronan.”
Ronan senior Cody Mock said he’s known Jake since kindergarten.
us and he’s one of the guys. (Graduating with Jake) is going to be awesome. I mean, he’s a part of our graduating class and that means a lot to us. I’m sure it means a lot to his family, too.”
Mock said his favorite memories of Jake revolve around Jake managing the Ronan basketball teams, “Just because he’s so happy. That kid loves basketball.”
Like most afflicted with autism, Jake has difficulty communicating verbally and has his own support structure providing him with comfort and stability. He must have a good supply of his favorite meal (pancakes, bacon, eggs and maple syrup) on hand at all times. If walking in a crowd, he needs to hold his father’s hand.
Rich described Jake as moderately high-functioning for an autistic person. He is very verbal and able to communicate roughly 100 words. He loves Thomas the Tank Engine and Percy and has several hundred Thomas the Tank Engine toys, pillows and T-shirts.
Rich said Jake is a brilliant individual with “super-senses. Hearing, sight and smell; nobody knows why, but most autistic children’s senses are extreme.
“In Ronan, Jake is probably the trailblazer for autism,” Janssen said, beaming at his son. “Ronan is his home and will always be his home. His roots go back before there was a Ronan. He is loved by the community itself and it’s a great place to live.”
Jenna said the hardest part about having an autistic brother are the differences from what another family might view as normal.
“It’s really different compared to everybody else,” she said, recalling when Jake had a “breakdown” in the Seattle airport because he wanted a Thomas the Tank Engine toy. “A ton of people were just staring at us.”
“All we could do was wave,” Rich said with a chuckle. “I think that’s the most difficult thing. People see Jake and he looks perfectly normal; it’s not evident (that he is autistic), and especially in a place like Missoula or Kalispell, they just don’t know what he’s about. He might shriek or act like a child, and people don’t understand ... At least the Ronan community knows Jake and know what he’s about.”
Rich said his family’s job is to prepare Jake to live semi-independently in a group home. Complicating this task is the fact that finding specialized teachers and centers is difficult in Montana. The Janssens have traveled as far as Seattle to the recently-opened Seattle Children’s Autism Center. Janssen called it a good thing for families who’ve just found out they’ve got an autistic child or relative. Unfortunately, it’s a rather lengthy drive.
“It’s very difficult for families like ours to network,” Rich said. “Really, we’ve been the sounding board for other families with children with autism.”
Rich said he’s given many presentations to colleges and future teachers of autistic children and, with the advent of the Internet, a lot of people will have more information readily available in the years to come. But there is no known cause or cure for autism.
“It’s an epidemic right now,” Rich said. “You want to find the blame, but it’s very difficult to pinpoint the exact cause. I always get asked, ‘Is it hard?’ Yea, it is, but it’s normal for me.”
Ronan School District special services director Joan Graham has known Jake since he was 3 years old and said that while she was proud of Jake and how far he’d come, it would be emotional to watch him leave.
“It’s hard to see him go,” Graham said. “It’s kind of bittersweet, and I think it’s true of all teachers at the high school, having spent four years with him. But, we’re also excited because there’s a whole new world of opportunities for him in the world as an adult.”
Jennie Youngren, Jake’s high school special education teacher, remembered several occasions when Jake — in another room separated by a closed door — would hear a serious phone conversation she was having.
“When I hung up, he’d interject his 2-cents to the conversation. He has such a keen sense of awareness of what’s going on, and he made us all laugh frequently,” she said
Both teachers said Jake has quite a sense of humor.
“Sometimes you would say something to him and later in the day, he would say it back to you in a way you weren’t expecting,” Youngren laughed. “He would sort of call you out on it.”
Graham added she and another teacher in the department, Mrs. Swanberg, looked similar in appearance. As a joke, Jake would often say to Graham, “Hello, Mrs. Swanberg. Nooo, Mrs. Graham!”
“He was pulling a joke on me because Mrs. Swanberg and I look very much alike. He did it for years,” she laughed.
Jake is also quite a bowler. Some time ago, the district hired a male aide who also was a good athlete and a good bowler. Jake and the aide went to the bowling alley together with some other kids. Unbeknownst to the male aide, Jake will frequently bowl either a strike or a spare.
“Pretty soon it was a competition (between Jake and the male aide) as to who was going to be a better bowler, and in the end, Jake won,” Graham said.
“It was the first time this aide had seen him bowl, and I think he was absolutely amazed at what a great bowler Jake was. He couldn’t believe he’d been beaten. It was like watching a bowling competition on TV.”
Rich said perhaps the biggest blessing is that Jake could not care less about what anybody thinks about him.
“He doesn’t care,” Rich smiled. “He only cares about us and things that make him happy.
“What I’m hoping for those that are just finding out their kids have autism is that they understand that it’s not the end of the world by any means — It’s actually a new beginning. I believe that because you can find out a lot about yourself and your community by dealing with it.
“His world could be normal, and ours could be strange.”