Ind. boy, 9, helps raise Down Syndrome awareness

PRINCETON, Ind. (AP) — Nine-year-old Princeton native Eddie Craig loves cowboy boots and football, Batman and the Ninja Turtles.

His red t-shirt reads, “Keep calm, it’s only an extra chromosome.”

Eddie was the poster boy for the recent SMILE on Down syndrome Buddy Walk.

They’ve been involved on the SMILE on Down syndrome parent network since he was born, said his mother, Julie Craig.

He also had his picture taken for national ads, such as in support of the Able Act, she said.

“We didn’t know that he was going to be a Down syndrome child,” Julie told the Princeton Daily Clarion (http://bit.ly/18fitt1 ).

Founder Nina Fuller left them an information packet about SMILE on Down Syndrome in their hospital room after Eddie was born.

Interested, they went to the Buddy Walk in 2005. There they were introduced to other parents who had children with Down syndrome.

The family, including his 14-year-old sister, Jada, made it a habit to stroll in the Buddy Walk ever since, and even made a team of it. At first there were only seven of them on a team, but by their third year they had over 120, she said.

This year, several of Eddie’s teachers like Ms. Bailey (music), Mrs. Stafford and life skills teacher Ms. Leslie Dillon (his favorite) joined in the SMILE mile walk and 5K at Vanderburgh County 4-H grounds.

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“This year’s Buddy Walk was a torrential downpour,” Julie said. “But to see these kids_nothing could dampen their sunshine that they put off…they were so happy and excited and having the best time of their life. It was heartwarming to see it.”

“They push for awareness and support and inclusion of our kids,” Julie said of the group.

There’s a SMILE center in Evansville that offers fun nights and learning, she said, even for the parents.

Julie says there would be no funding or help for Down syndrome children in the school system if it wasn’t for the support group.

“It would be a whole other world,” Julie said.

“There would be no way of advocating for our kids. They need a little extra support, and without a group to rally with for that support or to demand it, there would be none,” she said.

“It’s been beneficial to him to get to hang out with the general education kids, just the general, everyday kids, but it’s beneficial to those kids too because they get a chance at a young age to be around the kids with special needs,” Julie said. She said that his teacher Mrs. Stafford has been “fantastic” in that aspect.

The schools Julie went to didn’t have special needs kids included in classes, she said. So when they were in high school it was harder for other kids to learn how to be around kids with other special needs, she said.

Those kids weren’t included in general education or even lunchtimes. “They were kind of pushed off to the side,” Julie remembered.

“After having little Eddie there’s no way I’d want that for him,” she said.

“It worried me that he’d be picked on, made fun of, all the regular things that you worry about for your regular everyday kids, but ten times worse.” Julie said.

There’s a timeline with everyday kids, she said. But a child with Down syndrome or any other special needs, those little things are huge, she said.

“Little” achievements like crawling, drinking from a cup, and walking were “so much more precious because you don’t know when it’s going to happen with a special needs child,” she said.

Predictions doctors and therapists made were wrong, Julie said. He’s had a lot of physical, speech and occupational therapy to help him get where he is_Eddie can speak clearer and jump with two feet off of the ground, unlike others with Down syndrome.

“The biggest surprise is how loving he is,” she said. Eddie loves to make his 6-month-old sister, Madelyn, laugh. He enjoys a close relationship with his grandparents, Patty and Eddie Craig.

“Ha, gross!” he said, reacting as Madelyn seemingly tries to eat the table.

“He’s forgiving, he’s kind, super silly, he’s got a great personality,” Julie said.

“Not in the mornings,” Jada laughed. “In the morning’s he’s a bear.”

“I think he gets that from me,” Julie said.

She added, “He’s got more try in his heart than 10,000 people…He’s got so much determination. He’s gonna do it, he’s going to do it right and he’s going to do it well,” she said.

“He’s also annoying,” Jada said. “He likes to talk.”

What does the second-grader think about his sister?

“She’s ticklish,” Eddie said, reaching out a hand and tickling Jada, causing everyone to laugh.

Eddie is just like other children, even with his special needs. He’s going to be “the Dark Knight” for Halloween. He enjoys St. Louis Cardinals baseball and David Freese and adores the New Orleans Saints’ Drew Brees.

“They want to be accepted…included. It means the world for them,” Jada said.

“Watch this, Mom, watch this,” Eddie says, swinging between two chairs.

“This community has been very supportive,” Julie said. And so have others. A special needs teaching friend in Denmark had her own class do a special walk called “Eddie’s Buddies” on the same day as the Buddy Walk, in Denmark. They also wore capes and dressed as superheroes, just like Eddie’s team did.

“We really want to push for awareness of kids with special needs, not just with Down syndrome, in the community,” Julie said. “We want people to be aware of how to treat them and integrate them in the community.”

“If you don’t understand, don’t stare,” she said. “Don’t feel pity…If you want to know how to help, just ask.”

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Information from: Princeton Daily Clarion, http://www.tristate-media.com/pdclarion

This is an AP Member Exchange shared by the Princeton Daily Clarion

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