Seahawks GM and family step up fight against autismon March 29, 2013 @ 3:23 pm (Updated: 11:19 am - 4/15/13 )
For the first year and a half of Ben's life, they knew there was something wrong, but they had no idea what it was.
"He was just completely withdrawn, he wouldn't connect with us, he wouldn't communicate with us, he wouldn't respond, he would have horrible temper tantrums," Traci said.
It would take another frustrating year of doctors, psychologists, and others before the family finally got the answers. Ben was diagnosed with autism.
At first, it was a big blow to the family.
"You have goals and dreams for your children and it was one of those moments where you just regroup a little bit," John said.
It was a double-edged sword. While the news was a setback, it at least told them what was wrong with Ben.
Ben was far from alone. The CDC says autism is the fastest-growing developmental disability in the U.S., affecting one in 88 kids and increasing at between 10-17 percent every year.
But getting the diagnosis was just the beginning. Then came the challenge of figuring out what to do. And it wasn't easy. Unlike with the Seahawks, there was no playbook. The symptoms and treatments vary widely from child to child.
"People need to know more about autism and hear about it and understand it and understand the struggles, because almost everybody you talk to knows someone has somebody in the family who has a friend with a child with autism," Traci said.
Despite the initial shock, the Schneiders soon got to work. Ben underwent 35 hours a week of applied behavioral analysis (ABA) therapy, with a team of five healthcare professionals working with him everyday. He got intensive speech and occupational therapy sessions and when he got older, began working with a therapist to help him learn to function in social situations.
It was difficult and expensive. Autism treatment and care can cost upwards of $60,000 a year. Lucky for the Schneiders, they could afford it, but many families can't. And many insurance companies refuse to cover autism care.
"Once you get there, you find out how expensive some of these treatments can be. Families might be forced to back off or avoid cutting edge treatment," John said. "And they shouldn't have to."
In Ben's case, all the treatment has paid off. Now 11-years-old, he's mainstreamed in a fifth grade classroom. Traci and John say he's able relate to other kids and get along in school. Like most kids his age, he loves video games, reading, and Legos.
"He loves building things," Traci said. "He can make some pretty impressive things."
There are still plenty of challenges, but things are significantly better. Now, Traci and John are also working to make things better for other families as well. They've formed Ben's Fund, a program that provides grants to help cover the costs of treatment, medical equipment, and anything else needed to support children with autism.
"There's hope, we can help you figure this thing out," said John. "All these children are different and we're going to figure out where your child is and we're going to help steer him or her down the path to recovery."
The Schneider's say rather than tell people what they need, families can apply for whatever they determine is most important for them.
"If it's doctors appointments, if it's therapy appointments, if it's an iPod with a download that will help their child communicate with other people if they're non verbal, there's the gamut," Traci said.
Ben's Fund is administered through the organization Families for Effective Autism Treatment of Washington (FEAT), a non-profit that provides vital services and support.
"We have some good friends of ours now that when they received the diagnosis for their son they immediately called FEAT," Traci said. "And FEAT stayed on the phone with them for two hours and really walked them through the options, the things you can do for your child, and the resources locally. And that's invaluable."
"Providing hope. I think that's the most important thing that FEAT does," John added.
To help support Ben's Fun and FEAT, Traci and John will host the second Prime Time: A Spirited Celebrity Waiter Event. The fundraising gala at El Gaucho Bellevue features players, coaches, and alumni as celebrity waiters, with a live and silent auction.
Last year's event raised over $250,000 for Ben's Fund, and the Schneider's say the support keeps growing.
"The families are thrilled when they get a grant," Traci said. "The response has been amazing and we hope to be able to do even more in the coming years. It's been really cool."
While the April 18 event is sold out, the Schneider's say you can still help by making a donation to Ben's Fund or donating an auction item to the event.