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News, State/Region — March 4, 2013 at 6:00 pm

Steps of Hope for Autism

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Minnetonka, Minn. – The Autism Society of Minnesota held its 13th annual Steps of Hope walk at Ridgedale Shopping Center yesterday.  The event brought together over one thousand people from across the state who are impacted by autism.

Heidi Zetterwall of Oakdale said this was her seventh year as a member of Team Cheeseburger at Steps of Hope.

Zetterwall’s 9-year-old son George has autism.

She said he used to be completely nonverbal, but at age four, he “sprang forth with language and hasn’t turned around since.”

Zetterwall said when George began to gain language, he was infatuated with a computer game involving a character than munched on cheeseburgers for points.

“Whenever he wanted to play the game, he would run around the house repeating, ‘Cheeseburber! Cheeseburber!’  That year was the first year we did the walk, and it just seemed fitting that we be called Team Cheeseburger.”

But, George is unable to eat cheese as a part of his casein-free diet.  That, along with his interest in the TV show Spongebob, lead him to personally adopt an alternative team name:  “Team Krabby Patty.”  The family uses both.

George sticks to a strict routine at the walk.  Zetterwall said, “The first year we came, it cemented in his head that this is how the walk goes:  we come in, we register, we immediately go up the escalator, and then we start walking. So even though the walk hasn’t officially started, we’re making our loops.”

The need for routine is a widely-known characteristic of autism.  Zetterwall said routine “helps lend a structure to what is otherwise a completely unstructured world.”

When she anticipates a change in routine for her son, Zetterwall said, “We try to get George enough information ahead of time about what’s going to happen to keep the stress level down because everything else is so surprising and different.  Having a schedule and knowing what’s going to happen next is calming.”

A big part of George’s routine is locating all four of Ridgedale’s parking lots.

Zetterwall shrugged and said, “George likes structure.  He has decided that every time we do the walk he has to find each of the four parking lots.  The first year, he wanted to make sure there were four parking lots because he saw a sign that said North Parking Lot.  He knew there were four directions, so he decided, ‘If this one’s North, there’s bound to be more.'”

So each year, their path around the walk is determined by “the checklist in [George’s] head” for all four parking lots.

Zetterwall said it’s important to him.  “And he will make sure everyone else knows where the parking lots are also. It’s his public service for everyone.”

She said it’s fun for George to come to the walk each year, but “for us, it’s a way to give back. We’ve come a long way in our journey.  What was once very confusing and strange is now ‘everyday’ for us. We want to keep giving back to this community that knows what we’re going through.”

She said she has found resources like therapy groups, the school George currently attends, and other programs that have benefitted her family along the way.

Lisa Sieben, the walk coordinator, said this year they had over 60 organizations present at the event.  “They are here as resources for individuals and families living with autism, and they are all people that are willing to support the autism community.”

Zetterwall said, “This event gives you exposure to everything and allows you to ask the questions to find out if it’s right for you.  Surfing the web doesn’t give you that one-on-one time.”

Zetterwall said the Autism Society and other programs have helped them cope.

“When you first get the diagnosis, there’s a lot of emotion that comes with that, so you really don’t know what it means.  They’re telling you, ‘This is what your son has. He may never speak, he may never, he may never…’ For us, it’s one day at a time. But we started to realize that he can do anything that he wants to do as long as we get him the help that he needs.”

 

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