Karen J. Foli e-interviewed by Hilary Williamson (February 2002)
In Like Sound Through Water, Karen J. Foli describes her painful five year 'Journey Through Auditory Processing Disorder' with her small son Ben. She gives the reader a window into the family's daily life as Ben's learning difficulties become apparent, his parents struggle to make sense of them, to obtain remediation, and to cope with the logistics of providing assistance. I found the family's story inspiring and was thrilled to have the opportunity to post this interview, which I hope will inspire others.
Q: How is Ben doing now? Is he still rowing hard?
A: Ben is doing very well. His expressive skills are still coming along, with mild clues to an outside observer that he is working on his language skills. He's always been a hard worker and very tenacious. I think those attributes will serve him well in life and because he knows he can be successful, he continues to put sincere effort into his tasks.
Q: Ben has parents with backgrounds that must have helped in working towards a diagnosis of his difficulties. How do people cope who do not have your resources?
A: It's hard. It's heartbreaking. And I think society owes more to these parents and kids than what it's giving them. For a parent who has no background in these issues, I'd suggest first trying to find a professional who has an interdisciplinary / multidisciplinary focus. They aren't easy to find, however. So many of these children have what I call "multifaceted struggles," meaning they have challenges in more than one area. But initially, someone who sees the child as a whole being will better serve the parent. That person should be able to appreciate the specialists who are the most competent in evaluating specific problems and not hesitate to refer the parent to that professional. For example, if a pediatric behavioral specialist (usually an M.D.) has seen the child and suspects an auditory processing disorder, then he / she should refer the parents to an audiologist who is trained in APD testing and management strategies.
The second suggestion I would have is for the parent, when presented with a diagnosis, to ask: "What behaviors or symptoms does my child have that led you to this diagnosis?" and just as importantly, "What behaviors or symptoms do NOT fit that diagnosis?" Asking for a complete explanation of testing results is also an extremely important step.
I firmly believe parents know when something is wrong - they just don't know what. It is the process of discovery that can be very difficult.
Q: What impact do you think the Internet is having (good and bad) in disseminating information on disorders and treatments to parents and professionals?
A: Overall, the information I obtained over the Internet was very empowering and very helpful. It contains an amazing amount of information that is easily accessed. But let the consumer beware. There is an explosion of various techniques and tools that are now available, and there is very little guidance on the efficacy of these tools. Money is an issue. Likewise, anyone can post an opinion and state it as a fact. I've been using the Internet long enough to employ a good dose of skepticism when I read certain things.
As I pointed out in the book, there is also a gap between the scholarly / scientific community's growing body of knowledge, and its application to real world situations, i.e. struggling children. That gap leaves a big margin of error for parents to fall into.
Q: You mentioned at the end of the book that the experience has made you a better person? Adversity can bring out strengths. How did it change you?
A: I stopped jumping to conclusions and judging people too quickly. Now I tend to feel more empathy toward folks, more of a sense that each person has her own challenges to deal with.
The second thing the experience taught me was to never give up on a goal and certainly not on a person. I learned to appreciate the many gifts I'd been given that prior to working with Ben, I'd taken for granted.
Most importantly, I learned what unconditional love was all about.
Q: Do you think that Ben's personality was also strengthened by his early struggles?
A: Yes, I do. He is more sensitive, more serious at times, more "used" to working hard. He is also more aware, unfortunately, of being measured by others. But the positives, his perseverance, his sweetness, his tenacity, his pride in wanting to do something correctly outweigh the others.
Q: Are you planning to write more on this topic or on similar ones?
A: Right now I'm doing revisions on a medical suspense novel. But I have several ideas for nonfiction books that surround issues of struggling children. I love the written word.
Q: What would you say to someone beginning a similar journey to yours?
A: Realize it's hard at times. Understand that fear is normal. Learn to ask for explanations. Appreciate that there is hope and these children have tremendous potential and gifts to offer the world when given the chance.Karen J. Foli holds a Ph.D. in communications research from the University of Illinois. She is also a writer and a registered nurse. She lives in Nashville, Indiana, with her husband and their 3 children. Find more about the author from her website at http://www.karenfoli.com.
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