United, grandmothers face a common foe, autism

06/13/2013 2:03 PM

06/13/2013 2:05 PM

Deana Petty is a 75-year-old grandmother who lives life on a grand scale.

The Leawood woman has 14 grandchildren who live in the Kansas City area; Frisco, Texas; and Malibu, Calif.

Petty and her husband, Doug, are like most grandparents: They dote endlessly on the kids by celebrating their personal milestones.

The couple’s grands — as Deana likes to call them — are the sunshine in their lives, the apples of their eyes, the joy in their hearts.

So when one of the grands — little Mac, who lives in Overland Park — was diagnosed on the autism spectrum five years ago at the age of 7, Petty gathered her family in close.

“My daughter and son-in-law Ashley and Marc — Mac’s mom and dad — and I and the entire family learned a new vocabulary and frankly, started living in a new world,” Petty said. “We noticed some speech delay when Mac was 4 years old but didn’t really think anything more about it.”

Now Petty knows from tireless research that children with autism have different characteristics and symptoms.

“I heard a doctor say if you meet one autistic child, you’ve met one autistic child,” said Petty. “Translation: there is no template.”

Petty found herself bewildered by the mountain of information on autism she started sifting through when Mac was diagnosed. She supported her daughter as she participated in the Autism Speaks-Kansas City chapter’s annual walk and did other things to help the family and be there for Mac.

But Petty needed to do something more than give money to a walk, baby-sit or even just cuddle with her grandson.

In 2007, frustrated and convinced there were other grandmothers just outside her front door in the same situation, Petty started GRAM, which stands for Grandmothers Raising Autism Money. The group has three main purposes: autism support, education and fundraising.

Petty did what any grandmother would do when faced with a dilemma: She put on a pot of coffee and invited friends to her home for conversation and cookies.

“About 25 acquaintances attended the first GRAM meeting,” said Petty. “Not one of them had an autistic grandchild, but all of them were willing to give money, which I donated to Autism Speaks.”

From those caffeinated grassroots, Petty’s small but determined army of grandmothers and other family members continue to raise funds for the autism community. Last year GRAM made donations to The Farmer’s House in Weston, Camp Encourage, which promotes social growth, independence and self-esteem in youth with autism spectrum disorders, and the Jellybean Conspiracy Show.

“We are a devoted group,” said Petty. “And now it’s not just grandmothers who attend our events, but grandfathers, parents, family and friends.”

GRAM also hosts an annual fall luncheon in conjunction with Autism Speaks. The Tutera family, a well-known philanthropic name in Kansas City with a personal interest in autism, sponsors the event, which will be held this year on Sept. 21 in Weston at The Farmer’s House.

Petty says her initial motive of serving coffee to help raise awareness for autism has changed a bit. She now serves wine at the annual luncheon.

“I always say, ‘Give a grandma a glass of wine and she’ll give you a donation,’” said Petty.

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