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| Father takes lead on child’s autism |
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 Until recently, Jesse Kaftanski knew about as much about autism as most people whose lives are untouched by the developmental disability.“Essentially that Dustin Hoffman was Rain Man,” he said. “Four or five years ago a co-worker came in collecting g signatures to sign autism insurance legislation. I didn’t know anything about autism, but anything that helps kids. Don’t suffer the children. So I signed. Who knew a couple years later that would benefit me and my daughter directly?” Kaftanski’s life took a sharp and unexpected turn into autism activism two years ago when his now 4-year-old daughter Esse was diagnosed. “Once you’ve had autism enter your life, you bury yourself in some form of denial, whether it’s work or drugs and alcohol, or you become a militant activist on autism. That’s the route I’ve chosen,” he said. “In some ways it’s helped pull me out of my own selfishness and completely devote myself to my daughter. The more you become proactive, the better results you get.” Esse was diagnosed with autism at her 2-year checkup. “We were concerned about a speech delay. Really not talking at 2,” Kaftanski said. “She didn’t have the eye contact problem or anything (a typical autistic behavior is avoiding eye contact). After a few meetings, she was diagnosed and we immediately jumped into the system, went to the Waisman Center in Madison and participated in some of their research. Just a fantastic group. They’re doing just amazing work.” Statistics show autism can be extremely hard on a marriage. The traditional scenario usually finds dad in denial while mom is left to cope. Not so in the Kaftanski family. The marriage fell apart, but he is the custodial parent and has his daughter 85% percent of the time. “The statistics are amazing. I think the normal divorce rate is 50%, and with autism I think it’s 80%,” he said. “It’s not easy. It drove a wedge, for whatever reason. I remember seeing a little sign about the statistics on an autism walk, and about six months later it reared its ugly head. Whether its the couple’s blaming themselves or each other. I’m sure everyone has a different story.” Kaftanski would have preferred a traditional story for his family, but even with the diagnosis and divorce, he said it’s important to forget the differences the parents may have and concentrate on the child. “I’m a product of a broken home,” he said. “For me, it’s all about the kids. Anything that can be done stressing the child and holding the family together. I’m one of those guys, step up, get past your personal stuff. A child needs their parents there, even if there is divorce involved. They have to know that they’re loved. That’s the big thing.” Kaftanski has taken the initiative to learn as much as he can about autism to help his daughter. He was living in Madison when Esse was diagnosed, but has since moved back to his hometown, Beaver Dam, where he has close family support. “We’ve got a great family support system,” he said. Kaftanski said taking the initiative to learn as much as he can about autism to help his daughter gives him a feeling of having some control and understanding of the condition. “It’s not so much a disorder as we just don’t understand their languages,” he said. “My daughter surprises me every day. When she’s gone for a day and half on the weekend (with her mother), she comes back and there’s something new in her cognizant development. She’s seeing more, communicating more. She’s putting together three and four word sentences. Her vocabulary has exploded. Every night I read to her. We color together. We make it a habit to identify things and ask simple questions. We learn to use her language to prompt her. It’s really what every parent wants to do with their child. We should be reading with them at bedtime and sitting down and having a meal and listening, really listening.” Esse spends her mornings at daycare and has therapy three days a week. “They design each program for the child,” Kaftanski said. “Some like puzzles. Some like sensory. Esse’s always been into water. It would calm her down and focus her. That’s where I really lucked out.” Kaftanski is from a family of Wisconsin surfers and is co-owner with his brother of Walk on Water Surfboards (walkonwatersurfboardsllc.com). He hopes to merge his passion for surfing with his interest in autism by developing a surfing program in Wisconsin like Surfers Healing, a California surf camp for children with autism. He is also inspired by Just Add Water, the story of 20-year-old Clay Marzo, a professional surfer from Maui who was recently diagnosed with Asperger’s Syndrome, the mild end of the autism spectrum. “He was 17 when diagnosed,” Kaftanski said. “Now he’s getting help and therapy. It’s a really good look at what it was like without a diagnosis. And how you fit into the social structure. Clay goes to California and participates in Surfers Healing camp. Clay takes a 10-year-old kid out in the water. The boy, who hadn’t said 10 words in his life, comes out of the water with a torrent of words. Everyone is shocked, mom is crying.” Kaftanski hopes to get a similar program here. “I really think something like that would go over HUGE here in Wisconsin, whether it was on the big lakes, the little lakes, rivers or the YMCA pools. Even if we could just SUP (stand up paddle) kids around when there are no waves, and have a beach party atmosphere. Good for the husbands and wives/moms and dads (network/support system), and great for the kids (semi-structured social interaction, and plain old-fashioned fun). Hopefully we can get our own version of Surfer’s Healing around here, or something of that nature. I’m going to push the power of surfing that can change lives and is spiritual.” In the meantime, Kaftanski has organized Surf Jam, a Wisconsin Early Autism Project event to benefit the Friends of Autism organization’s Family Grant Program. Held at High Noon Saloon in Madison on March 6, the event features five bands, including Kaftanski’s family band, The Mad Polecats, as well as Knuckel Drager, Screamin’ Cyn Cyn and the Pons, The Mad Polecats, The Delta Nine Band and A Royal Clark. We’ve got some skateboard and surf shops donating merchandise for a raffle. Lee and Larry Williams (Sheboygan-based twin brothers and heroes of the Great Lakes surfing scene. Vince Deur is sending copies of Unsalted to put in the raffle (Deur is a Michigan-based Great Lakes surfer who documented the scene in his documentary Unsalted). Kaftanski contends that Surf Jam and other events he has organized serve two purposes. “The more people that hear about autism and get involved, it’s knowledge and power. Whether its for research, or helping with low income children,” he said. “I like seeing an event where mothers and fathers can get out together, out of the normal every day routine, which itself can wear down on you and become destructive.” SURF JAM Benefit for Friends of Autism’s Family Grant Program, Sat. March 6, doors open at 6:30 p.m., High Noon Saloon, Madison Featuring: Knuckel Drager Screamin’ Cyn Cyn and the Pons The Mad Polecats The Delta Nine Band A Royal Clark $10 cover |
