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Against all odds: 9-year-old thriving despite challenges of Asperger's

Thursday, August 19, 2010

Tyler Hopper, 9, center, listens during Vacation Bible School activities at Lifebuilder Community Church earlier this summer. Tyler was diagnosed with Asperger's syndrome three years ago. Banner Graphic/JAMIE BARRAND
GREENCASTLE -- In his 9 years, Tyler Hopper has faced a lot of challenges.

Before he was 2 years old, he contracted a methicillin-resistant staphylococcus aureus (MRSA) infection for which he underwent two emergency surgeries.

Doctors told Tyler's parents, Bobby and Cami, that the chance of their son surviving that infection was slim, but Tyler overcame the odds.

Then we Tyler was 4, he diagnosed with Chiari malformation -- a malformation of the brain characterized by downward displacement of the cerebellar tonsils through the foramen magnum (the opening at the base of the skull that can cause headaches, fatigue, muscle weakness in the head and face, difficulty swallowing, dizziness, nausea, impaired coordination, and, in severe cases, paralysis).

For that condition, Tyler underwent brain decompression surgery.

Three years later, when Tyler was 7, doctors discovered a hole in his spinal cord. This also required surgery.

In addition to all his physical trials, Tyler also has Asperger's syndrome -- a condition belonging to a group of pervasive development disorders (conditions that are marked by delays in the development of many basic skills, most notably the ability to socialize with others, to communicate and to use imagination).

Tyler was diagnosed with this condition when he was 6. Because he had had so many physical ailments and issues, coming to the Asperger's diagnosis was difficult for doctors.

"It was a full-day process at Riley (Hospital for Children, Indianapolis)," Bobby said. "He had to see 10 different doctors who all had to come to the same conclusion -- and they did."

While Asperger's is similar in many ways to autism, it is a completely different condition.

"Children with Asperger's syndrome typically function better than do those with autism," information at the website aspergers.com, which is maintained by Massachusetts-based child, adolescent and adult psychiatrist R. Kaan Ozbayrak.

Bobby and Cami became concerned as Tyler grew older and didn't seem to be hitting milestones as he should have been. As he entered school, their concerns grew.

"We were very confused," Bobby said. "We knew he wasn't responding well socially."

Cami, who had taken time off from her job as a teacher to stay at home with her own children after they were born, became increasingly worried when she went back to work teaching preschool.

"I was comparing Tyler to preschoolers, and some of them seemed to be much farther along than (Tyler) was," she said.

For Tyler's parents, the Asperberger's diagnosis was more frightening than any of the others had been.

"When he had MRSA, we knew it was fixable," Bobby said. "When he had the brain surgery, we were scared, but we knew his odds were good.

"But the Asperberger's ... that was devastating," he continued. "He's going to have this all his life. There's no fixing it."

Tyler's Asperger's has manifested itself in several different ways.

He is a very literal child -- if a story is retold and the details are not exact, Tyler notices.

"He'll say, 'That's a lie, Daddy,'" Bobby said. "He'll say, 'That never happened.'"

Tyler has very little concept of personal space. He gets very close to people when he speaks to them. He also struggles with the concept of basic hygiene.

"It's a fight to get him to bathe, wash his hair or brush his teeth," Cami said. "

As is the case with many Asperger's children, Tyler will only eat a small number of foods. He eats pizza, macaroni and cheese, spaghetti (with meatless sauce only) and hot dogs with ketchup.

When Tyler doesn't like the taste of a food, it is so jarring his gag reflex will actually kick in. The only vegetable he can tolerate is baby food carrots.

Tyler is not medicated. Instead, Cami and Bobby work on teaching their son coping mechanisms to deal with his Asperger's.

Tyler is now a fourth-grader at Tzouanakis Intermediate School. He most enjoys music and physical education.

Like most children his age, he has academic strengths and weaknesses.

"I need to work on my math," Tyler said thoughtfully.

The Hoppers have been pleasantly surprised and are very grateful for the support Tyler receives from the Greencastle Community School Corporation, where Cami now works as a second grade teacher.

Tyler enjoys books from "The Chronicles of Narnia" series and the "Shrek" movies. He is involved with Cub Scouts.

But he has discovered his true passion is running. He has done two 5K races, as well as a 4-mile race. He has participated in the Special Olympics as well.

Tyler has a younger sister, Lauren, who is 7.

"We have a lot of arguments," he said with a sigh. "But I've let her sleep with me when she gets scared."

Bobby manages the McDonald's restaurant in Greencastle and is also the pastor of Lifebuilder Community Church in Greencastle. Tyler said he thinks he may want to follow in his father's footsteps and become a "McDonald's worker or a pastor" when he grows up.

"We've heard it said that people don't realize these kids don't think wrong, they just put things together differently," Bobby said. "We also heard a woman say that it's not just her son that has autism, her whole family does. And that's how we feel about Tyler."

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Young Tyler has overcome far more challenges than one child should have. Even so, let me speak about Asperger's Syndrome, since I have first-hand knowledge about it.

My eldest grandson has Aspergers. In addition to proper medication, children like these demand order in their lives. My grandson was hospitalized twice in his early years because of what we now call "violent self-destructive behavior."

Now for the good news. Asperger children are often very bright if only given the opportunity. My grandson is now 14 years old. He is excelling in school. He is also a deeply affectionate young man. He knows that he must be on medication for most of his life, and that he must never indulge in alchoholic beverages.

I write this note so that the parents of this fighting young man will fight beside him and not against him. Aspergers can be overcome with a combination of love and dedication.

-- Posted by registration on Thu, Aug 19, 2010, at 5:18 PM

Love my boy, he is a true hero in life!

-- Posted by hopperbc on Wed, Aug 25, 2010, at 5:29 AM

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