Music inspired Vail festival for autism
Vail Daily Correspondent
Vail, CO Colorado
VAIL, Colorado ” Many people in Vail, Colorado know about autism, but not many people truly understand the struggle of families with children suffering from it.
That’s why Steve and Shannon Fretz, along Dr. Robin Gabriels, started the SMART Foundation in 2007, three years after the Fretz’s son, Tyler, was diagnosed with autism. And to raise money for the foundation, Steve had the idea of hosting a music festival in Vail, his hometown. The first every Vail Jam takes place Aug. 14 and 15.
The inspiration for this bold move from a small foundation came from a profound experience the family during one of their many trips back through the mountains from a Denver doctor’s visit.
“We were just listening to ‘Ship in a Bottle,’ by Jupiter Coyote, and then when the song ended, Tyler said ‘Again!'” Steve Fretz said. “He hadn’t spoken for nine months. We just were both crying in the car, playing the songs over and over just to hear him speak.”
Children with autism can have a range of symptoms, including not speaking, sensitivity to light and sounds, anxiety in crowds, and gastrointestinal disorders that can make the child very ill. But the cause of the condition is still unknown.
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These are just a few of the symptoms, and the cause is uncertain.
“Tyler has a sensory integration disorder, so he can hear the snow fall and the sound in florescent lights… (he also) has a sleep disorder,” Steve Fretz said. “Our bodies create melatonin in order to sleep, but Tyler’s body doesn’t make any. We have to give him that every night with dinner or he doesn’t sleep.”
When Tyler was first diagnosed, the Fretzes were told their son’s care would cost $900 a day, which, over a lifetime, could add up to $3.5 million to $5 million. Even though the Fretz family has health insurance, the state of Colorado does not cover the costs of caring for an autistic child.
“Right now the American Academy of Pediatrics doesn’t recognize or even know what causes autism,” Steve Fretz said.
Many families with children with autism end up divorced or financially unstable, Fretz said.
But Fretz thinks that if Colorado Senate Bill 244, which would require insurance companies to pay for the diagnosis and care of autism, is signed by the governor of Colorado much of the financial strain will disappear. However, until then families with a child suffering from autism will have to rely on fundraisers and their communities to help pay for care.
But just having the money isn’t enough.
“Colorado parents pay the most in the country for autism care,” Steve Fretz said. “We are trying to get people here who are trained and who know what to do. And if we can’t get them here, we should be able to train them for free so that the kids and parents in the Mountains can get the adequate care that they need.”
One alternative to expensive medical care is a service dog that especially raised for to assist children with autism. The North Star Foundation at the University of Connecticut trains these dogs, and Tyler’s dog is a purebred black lab named Magic.
When Magic is around, Tyler’s behavior is controlled and people are more likely to approach and talk to Tyler. “When he has Magic he falls asleep without his medication. She should be called Miracle,” Steve Fretz said.
The SMART Foundation hopes to make these dogs more affordable and accessible to children who live between the Eisenhower Tunnel and Utah. The dogs will be a featured attraction at Vail Jam.
Steve Fretz said the slogan for this fundraiser is “You’ve heard about us, now we want you to see us.” The concert will be broadcast on the Web.
“We are very excited about this and making it an annual event. I think the concert will make people think about autism and be more involved,” he said. “While the concert is playing, we have a computer program where parents with kids with autism can upload their children’s picture so that everyone can see that these kids are just normal kids trying to have a life.
“Our goal is to try and get everyone around Tyler and other kids like Tyler in a good situation … by changing other people’s perspective on these children.”
What: The first-ever Vail Jam, which benefits Colorado autism programs at the Denver Children’s Hospital and the SMART Foundation.
Where: Gerald R. Ford Amphitheater, Vail
When: Tickets go on sale today for the Aug. 14 and 15 event
Cost: $85 General Admission / $165 VIP.
Bands: Confirmed are Big Head Todd, Jupiter Coyote, Joan Osbourne, Hazel Miller Band, and Blues Traveler. To hear Tyler’s inspirational song by Jupiter Coyote, visit http://www.jupitercoyote.com.
More information: Call 888-920-2787 for tickets. For more information about ticket pricing and events, visit http://www.vailjam.com.