Change for the better

“Trust your instincts and remember that you know your child better than anyone else. If you have concerns and know something isn’t right, you need to pursue finding the answers that will lead to your child getting the help and intervention he or she needs as soon as possible.”

This advice comes from Twin Lakes resident Charlotte Bolle, whose daughter, Claudia, 4, was diagnosed with autism in August 2007. Since then, Charlotte has tirelessly raised awareness about the disorder, doing so primarily through a video she created that tells the story of autism through Claudia’s experiences.

Bolle and her husband, Tony, began thinking something might be wrong with their daughter around the time she reached 7 months. Their son, Anthony, was 3, so the couple knew roughly what developmental milestones to expect from Claudia.

Up until then she had been making progress. Trouble was, she seemed to stop, even to regress.

Over the next two years Claudia began closing herself off in another world.

Charlotte could bang a pot, and Claudia wouldn’t even glance her way. Often the little girl would sit for hours mesmerized by a doorstop. Even a trip to the park would turn painful.

“My heart would break,” Charlotte said. “All the other children would be playing, and there was my daughter, just staring at the bark on a tree or at the sand or grass. We knew something was wrong, something was very wrong.”

Throughout this time, visits to specialists for genetic and behavioral testing were routine. Was their daughter deaf? Did she have Down syndrome? Was it a chromosome abnormality? Charlotte and Tony sought to find an answer, believing they could help her if only they knew what was wrong.

Beginning in September 2006, Claudia was being seen by the Autism Behavioral and Communications team at Children’s Hospital of Wisconsin, but it wasn’t until nearly a year later that a neurologist diagnosed her autism and then Claudia had the American Academy of Pediatrics’ recommended testing for the disorder through a psychologist.

The Bolles had fought to get to the root of their daughter’s problems, and now that they knew autism was to blame, a wellspring of emotions emerged. Charlotte, a photographer, channeled hers into a creative outlet. Using the many photos she had taken of Claudia, Charlotte developed a slide show video. She added music and facts she compiled about autism in general and about their own specific struggle with the disorder. Charlotte called the video “Change Her World.”

Charlotte posted it on What Kind of World Do You Want, a fundraising Web site (http://whatkindofworlddoyouwant.com/). When visitors to the site watch a clip, money goes toward the charity listed for that video. With more than 2.7 million hits, “Change Her World” has become the most watched video on the site. The next most popular has fewer than 1 million hits.

“Change Her World” has raised money for Autism Speaks, which is dedicated to raising awareness for autism (www.autismspeaks.org), and the video has been used by churches, schools and advocacy groups to educate people about the disorder.

Eventually Charlotte created a second version, and most recently a third to show how far Claudia has progressed. The videos have been shown at events and conferences in the United States, including Chicago and Milwaukee, in England, in Canada and elsewhere.

Since her diagnosis, life has changed dramatically for Claudia. She receives intensive therapy, including speech, occupational, applied behavioral analysis, and horseback riding. The Bolles have pursued biomedical treatment options, including hyperbaric oxygen treatments, and they no longer feed Claudia foods with dairy or gluten. She takes nutritional supplements. Most of Claudia’s treatment is not covered by insurance.

Life has changed for Charlotte and Tony, too. They were asked to serve on a Children’s Hospital of Wisconsin committee working on ways to improve the evaluation, treatment and support for autism at the hospital.

Dr. Michael Gutzeit, the hospital’s chief medical officer, said Charlotte and Tony have been “key in getting this group moving.”

“They’re working on ways to improve the whole process for looking at autism,” Gutzeit said of the committee members.

Another change is the creation of a Change Her World Web site (www.changeherworld.org), which is sponsored by Bolle family friends.

The purpose of the site is to raise funds for out-of-pocket expenses associated with Claudia’s diagnosis and to raise awareness for autism and the many impacts it has on families and society.

But the most important changes are Claudia’s. Although there is no cure for autism, the intensive therapies she receives and the alterations in her diet have produced what Charlotte refers to as “tiny miracles.” Her little girl, who was becoming so isolated, now craves attention and interacts with others.

“Before she wouldn’t let us hold her, wouldn’t let us touch her,” Charlotte said. “Now she’s always hugging somebody. Her personality has emerged. She’s our new little Claudia.”

To see Charlotte Bolle’s “Change Her World” video, go to http://whatkindofworlddoyouwant.com/ and sort by popularity.

This story was reprinted with permission from the April/May issue of She, a magazine for southeastern Wisconsin women. To subscribe, go to www.she-magazine.com.