We’re starting a new series here at the FCNews blog: What matters most. We hope to share the good deeds of the people in our industry, and give some recognition for all the hard work they do that makes our world a better place. Our first post looks at Team Jake, established by Karen and Mark Cook of Cook & Kozlak Flooring Center in Canton, Conn.
Autism is a disabling brain disorder that affects the way a person communicates with other people. It’s estimated one in every 110 children is diagnosed with autism, making it more common that childhood cancer, juvenile diabetes and pediatric AIDS combined. The cause of the disorder is unknown.
Team JakeKaren’s 14-year-old son, Jake, has autism and she consistently downplays her years of volunteer service. She says she’s simply “doing her part,” but others see it differently, saying Karen is a dedicated, passionate and creative person when it comes to supporting children and adults with Autistic Spectrum Disorders and their families.
“She’s just an outstanding person, parent and leader,” said Shannon Knall, a mother of a 10-year-old boy with autism, who has worked on several fundraisers with Cook. “She does it all and does it really, really, well.”
For the past decade, Karen has spent a good portion of her life juggling work, volunteering and looking after Jake. She has served on boards, participated in walk-a-thons, organized fundraisers, given seminars, and lobbied legislators for better medical insurance coverage.
“It’s kind of a cliché, but I’m trying to make the world a better place,” she said.
About six years ago, the Cooks started Team Jake & Co., a group of relatives and friends who organize fundraisers; including participating in an annual walk-a-thon that raises money for the national organization Autism Speaks. A recent beer-tasting event at the Hooker Brewery in Bloomfield, Conn., raised $5,000 for the group.
“She’s great,” said Lauren Joyce, executive director of the Connecticut chapter of Autism Speaks. “Anytime I need something, she’s there.”
Working with Karen is like working with a staff member, Joyce said, adding she is capable of any assignment. For the annual walk-a-thon, Cook is instrumental in planning the pre-party festivities, helping to organize activities at the event and overseeing the awards dinner.
As an eighth-grader, Jake takes special education classes in the LINKS program at Northwestern Regional Middle School, Winsted, Conn. He loves art, math and music, but struggles with communicating and social skills, Karen said. He interacts with other students in the special education class and in the general student population, but is not expected to live independently when he becomes an adult and can’t be left alone at home.
At times she is saddened at knowing Jake can’t and probably never will understand the things that make other kids happy. “Even though he can do math, he can’t tell us when he’s not feeling well, what’s bothering him. You just have to move forward. It’s not like you have a choice.”
At home, Jake has no problems understanding certain things or handling his assigned chores. “He’s the dishwasher-emptier,” Karen said. “He knows where all the dishes go.”
She said Jake is creative, active and has a great sense of humor. “How many parents have a 14-year-old willing to hug them, to hold them or give them a kiss on the cheek? He does everything with us. How many kids do things with their parents?”
Adele Banas, who was Jake’s speech therapist in elementary school, serves as Team Jake & Co.’s co-captain with Cook’s sister, Kathy Kahoun, who also works at the Canton family flooring business. While Banas said she mainly works the phone to arrange for auction items and donations, it is Cook who has all the ideas, whether it be hosting a wine tasting, beer tasting or silent auction and raffle events, “She’s the dynamo.”
As for Jake, Banas called him “the coolest little guy,” who has got great potential. “It’s up to us to bring it out.” She recalled 4-year-old Jake’s first words in preschool. His request, “I want ice-cream,” sent teachers scampering to a local store. They returned with a half-gallon of vanilla ice cream. “He really chowed down,” Banas said.
Karen expressed concern that while autism cases have risen over the past decade, there are too few programs available, especially for adults over 21. Money spent on the diagnosis and treatment of autism is a fraction of the dollars spent on other diseases, she said.
“There’s no end for autism. It’s forever,” Cook said. “My hope is to get people to understand that something’s going wrong with our kids and we need to find out what it is.”
While both husband and wife share in the responsibility of caring for Jake, it’s Karen who has done the “lion’s share” of volunteering, said Mark. The couple also has a 16-year-old, Drew, who is high-functioning with autism.
“I try to support her in any way I can. I stay home with the kids a lot,” said Mark, a past president of the Connecticut Floor Covering Association.
In addition to Banas, teacher Kathy Schwarz worked to get Jake the best of school programs, Mark said. It was Schwarz who helped them understand how to stand up for themselves when it came to getting the best for Jake. “I don’t know what we would’ve done without Kathy. She was there in the beginning, when we needed her most.”
For now, Karen said she plans to continue her volunteer efforts and to make sure autism receives more attention. She’s also grateful for the relationship she has with Jake. “My hope is someday he’ll be able to communicate,” she concluded. “I know he’ll never be able to live on his own, but I want to be able to leave the house for a couple hours and know he’ll be alright.”
John Mason is a freelance writer from Hartford, Conn., who has installed floor covering for 30 years after learning the trade from his father. He can be reached at 860.614.7560, or je-ssmason@comcast.net.
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