MADISON (WKOW) - Unless you live with autism, you can't know what it's like. And our story can only touch the surface of the life of a family that's spent the past six years dealing with not one, but two autistic children.
Calvin and Peter are eight-year-old twins. Their differences are more pronounced than just their looks because Peter has extreme autism. The Moen family shows us "Where there's a will, there's a way."
"Wake up, wake up, sleepy head." Their days start very early with a gentle wake-up. And Peter heading for his swing, his refuge. Jackie Moen intentionally keeps their mornings low stress; to do otherwise is counterproductive.
"Calvie, time to come eat. Pete..." They always sit together over breakfast, engaged in word games and singing. Calvin plays along.
And Peter does too, but in his own way. Pete was the first to be diagnosed with autism, when he was two. Pete's mom Jackie says, "He looked away one day and didn't look back for a couple of years." Her husband, Ken, says, "And when Calvin was diagnosed, that hit us pretty hard, I think." And Jackie responded, "And then we found out how you manage with two." Managing can be noisy and repetitive.
Upstairs, the family watches old videos of when the kids were in therapy. Barbara says, "I notice he has something in his mouth." Jackie says, "He just pushed that away, he's always chewing something. He had food aversions so he ate very little. He ripped everything. He ate things he shouldn't, like sand and rocks, which we still deal with today. We couldn't let him have a mattress, and no toys.
Jackie and Ken's life became a constant stream of people offering intensive, one-on-one therapy that lasted several years. Peter was completely non-verbal, but learned sign language, and then used a computer to communicate.
Calvin improved a great deal. But Pete's progress has been agonizingly slow. "Days meant nothing. It was just an absolute blur, and it continues to be a lot of the time," Jackie says with slight smile.
While Calvin attends 2nd grade at McFarland Primary School, "Okay, you know the drill, work hard, play hard, and mind the rules," Pete spends his mornings at Common Threads, a resource center Jackie and Ken started for families with autism.
Two afternoons, Pete spends out in the community, learning about life outside the classroom. And three afternoons, Pete attends the same school as Calvin, but with an aide by his side, using a sophisticated personal computer to help him communicate. It opened his world, and their eyes.
Jackie says, "I don't know that we would have known that he's as bright as he is without that vehicle because Peter doesn't even have a reliable ability to shake his head yes or no." But this machine has its limitations. It can't help Pete communicate how he feels.
Ken says, "We see things where we think he might not be feeling well, but we can't ask him. He can't tell us he has a headache." Jackie adds, "Sometimes for whatever reason he'll sit on the edge of his bed and just start to cry. And we have no idea what's he's sad about or if he's hurt. And it's agony not to know why he's crying."
In addition to speech therapy, Pete attends class like other students, interacting as best he can. Holding hands is a big achievement.
And on weekends, they all relax. As difficult as it is - always - autism is the rhythm of their lives. "Autism gets woven into your life and the individual that has autism gets embraced and is loved and I'm hopeful there will be greater tolerance as people learn more about it," says Jackie.
Jackie and Ken constantly, gently, try to push the boundaries with Pete to help him take steps forward. It's simple things, like introducing new foods and getting him to do everyday tasks with fewer cues. One of their goals this year is to visit other people, which they've been unable to do.
Jackie has four adult children from a previous marriage. Together, they represent solidarity, and they are all focused on helping Calvin and Peter live happy lives.
The Autism Society of Greater Madison publishes a comprehensive local resource directory for families that deal with autism. The directory is available at its site, along with a wealth of information.
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