Sam's story: Rock Rapids boy featured in autism documentary
ROCK RAPIDS, Iowa -- At age 11, Sam Wessels has already hobnobbed with a lot of important political figures -- all the presidential candidates in the last two elections -- but he's quick to quash any speculation about a future in politics.
"I don't think I'm going to be a politician when I grow up," he offered without even being asked the question. "I'm into politics, but it's too tough for me."
Sam's campaign trail stumping has all been on behalf of people with autism -- people like himself. His message will reach a broader audience with the release of a documentary, "The United States of Autism," next week. Sam and his parents are one of 20 families featured in the film.
The hand flapping was the first unusual behavior that Mark and Lin Wessels noted about their son. Sam was about 15 months old, Lin recalled, when it started.
"He had been born premature and was still getting Healthy Family services," Lin said. "So I asked the (home health worker) about it, and she asked me more detailed questions. I guess they'd just had a seminar about autism, so she knew the questions to ask. She asked me about his words -- did he have any new words? 'Is he still talking regularly?' No, come to think of it. 'When was the last time you heard him talk?' I couldn't tell her. We hadn't thought about it. That sounds bad, but we really didn't. So that was a big red flag to her."
The Wessels made the decision to have Sam screened for autism, and the results came back as "significant," although they still didn't have an official diagnosis. That would take longer.
"I started looking online, and everything said 'early intervention, early intervention, early intervention,'" said Lin about the frustration in cutting through the red tape to an official diagnosis -- which finally came on March 24, 2004, at Sioux Valley (now Sanford) Children's Clinic in Sioux Falls, S.D.
"She said, 'I have your diagnosis for you, and it is autism,'" related Lin. "And I said to her, 'Now what?' And she said, 'Now you need to educate yourself on your son's condition.' ... The first book I got was so full of medical jargon, I had to stop and look things up on the Internet because they weren't in the dictionary -- medical terms. But we never quit learning, from that point on, about our son's condition and what might help him."
Meeting the candidates
The Wessels began to pursue opportunities to talk to public officials shortly after Sam was diagnosed as autistic. Mark works for Farmers Elevator Co-Op, and Lin is employed as a paraprofessional in the Central Lyon School District, and they soon learned the economic implications of an autism disorder.
"We learned what kind of services he was entitled to, and honestly, for physical therapy, occupational therapy, speech -- it was like $115 for 15 minutes with a 30-minute minimum, and our insurance at the time denied his speech therapy," explained Lin. "We had learned that the waiting lists were long; it took months. So Sen. Grassley was going to be at my husband's workplace one afternoon, and I decided to take Sam over and talk to him, and so we did -- talked about these kids needing these services more quickly, because that early intervention is so important. As we became more active as advocates, it made more sense, especially in 2008, to talk directly to the (presidential candidates). After all, in Iowa they practically come to your doorstep. The farthest we ever had to travel was 75 miles to Sioux City."
Despite the limitations posed by his autism, Sam has no problem expressing his views in front of a crowd.
"If he would not get the mic at some sort of political event, he'd be disappointed," said Lin. "He's kind of a ham. He loves it, and he's very genuine, and that's even better."
Sam came face to face with President Barack Obama in September 2012, during a campaign event at Morningside College in Sioux City.
"We had no idea if we'd meet him or not, but that was the way it was with all the candidates," explained Lin. "We just went to all the rallies and campaign stops in hopes of getting Sam to ask a question. All I can say is God is in our corner. You try to get a really good spot to sit or stand, but you have no idea if they're going to pick you. I feel like we have definitely had some outside help with that."
When the opportunity presented itself, Sam got the president's full attention, with Obama leaning down so he could better hear the question. Lin had her camera set to video to capture the moment, but the batteries died, so the only photos she has from the encounter were taken on a bystander's cellphone.
"I asked him if he would stand up for autism, because it's a major thing that's affecting our country," related Sam. "He said he already had a plan for that, but I don't think he's put it into motion yet."
Currently a fifth-grader at Central Lyon, Sam is in a regular classroom but has the assistance of a one-on-one aide.
"He has some modifications and accommodations, but besides spelling he does all the same work as the other kids," explained Lin. "... A lot of what he needs help on is staying on task. The autism wants to take over, so he gets sensory breaks throughout the day, which help him tremendously. He has an occasional meltdown, but that's a lot less frequent than it used to be."
Lin explains autism, as it pertains to Sam, as "a processing disorder. Things don't process properly; they process much slower for Sam. It was huge when he was little, but his processing has improved. But we have to get people to back off and give him time. Questions and things take different channels in Sam's brain. If you ask him something and he doesn't respond and then you ask it again, he has to start all over. That was a pretty big challenge, even for relatives -- asking four or five times isn't going to help.
"His neurological system doesn't process it the same way. That's the easiest way to describe it."
Through social networking, the Wessels learned there are many families out there dealing with the same issues, although "we're making some progress," said Linn.
"The statistics on autism are just astronomical," she noted. "Just last week, the CDC released new numbers of one in 50 (children affected by autism), one in 34 for boys. It's four times more likely in boys. ... We get people who call and ask us questions, especially who are newly diagnosed, and that's OK. ... Other parents have helped us tremendously along the way, parents who have been there already.
"To feel like somebody else gets it has been pretty significant."
Sam is considered high-functioning on the autism spectrum, but he also has a couple of identified learning disabilities that particularly affect his writing. But he loves to read, and especially enjoys his social studies class.
"We're studying the War of 1812," he related. "It was basically the second war American had in history, and guess who it was against? Britain. I'm not kidding."
Like other boys his age, Sam is enamored of video games, and his career aspiration at this point --having discounted politics -- is to create them. Other favorite activities include swinging in his backyard and swimming, although both have been big accomplishments.
"Anything athletic or physical is very challenging," said Lin. "He didn't swing until he was 9. He can't ride a bike or tie his own shoes. But we didn't know if we'd ever hear him speak again, so we don't take much for granted anymore. All those little things were big things, and we pick our battles. I'll tell you, we can't fight them all, or we'd be exhausted."
As far as Sam's perceptions of autism, he doesn't realize that he's different from anybody else.
"For as long as he can remember, he's always been that way," Lin said.
Making a movie
Through her social network, Lin learned that Richard Everts -- the father of a child on the autism spectrum -- was planning a documentary on the subject. His film was one of the first Pepsi Refresh Project winners, with a plan to make an 11,000-mile, 40-day journey across American to visit 20 families and individuals affected by autism while searching for answers for his own son.
"We were known on Facebook for our political activism, and that caught the attention of Richard's wife," related Lin. "She asked if we'd be interested in applying to be in the film. We had to think about it ... and in the end, we decided if we were going to get our message heard, it would be a good avenue. We applied and were accepted, and it went from there."
Sticking to a firm schedule, Everts and his film crew arrived at their house and filmed on June 30 and July 1 of 2010.
"They made it a lot of fun," Lin said. "You get a little nervous, because you want your message clear, but they made it very easy.
"I cleaned my entire house, except for the front porch -- we never use it, and it's a catch-all for everything -- and guess where they did the interview?" she added. "Oh well, live and learn. Lock the door if you don't want them to use it."
The editing of "The United States of Autism" has now been completed, and it premiered Friday at a New York City theater.
"At the end of the day, I hope people in the autism movement begin to coalesce like the AIDS movement did in the '90s," said Everts about what he wanted to accomplish with the film. "To do so, we have to start understanding what makes us similar and respect the differences as reasonable people. If we can help shape the minds of influencers out there, I think we will have accomplished something great. Ultimately, it will be a test of introducing all our movement's strengths and weaknesses to the world and hope people begin to truly understand."
The Wessels are anticipating their own premiere of the movie, slated for April 14 at the Historic Palace Theatre in Luverne.
"We're really grateful that the (Palace Theatre) board approved that, and they offered the proceeds, which are all going to an autism charity; they're only keeping the concessions for operating expenses. We feel so blessed and grateful."
The Wessels will have a question-and-answer time after the showing. Sam, in particular, looks forward to addressing the gathering.
"Yes, I kind of do (like talking in front of people," he said, "especially if they give me a microphone."
"The United States of Autism" will be screened at 2 p.m. April 14 at the Historic Palace Theatre in Luverne. The showing is sponsored by Sanford Health, the Luverne Optimist Club and Blue Mound Area Theater. Tickets are available at http://usofautismpalacetheatre.eventbrite.com or by calling (507) 283-8294.
Daily Globe Features Editor Beth Rickers can be reached at 376-7327.