Like Sound Through Water
2005-01-08 20:37

Posted by Janis

Like Sound Through Water:
It’s How My Son Hears

© Karen J. Foli, 2002


My name is Karen Foli. When people want my attention, they call me in different ways. My husband says "Karen" or a term of endearment. My mother refers to me as "honey" a lot. When I was teaching in a college of nursing, students raised their hands and said, "Dr. Foli." More recently, therapists have documented me as "the patient’s mother." And in February, people will be able to say "author" after my name. But one term defines who I am today like no other name I own, one that my three children say dozens of times each day: "mom."

About six years ago, my husband and I realized that something was wrong with our son, Ben. His expressive and receptive language skills were severely delayed. I became enmeshed with a system that was foreign to me, a circuitry of providers who used words that I didn’t understand and measured my son in ways that, at times, seemed both absurd and frightening. It is a system entered into daily by countless parents of struggling children.

At the first clinic where my son received speech therapy, our input was passively ignored and tests and reports hinted that our son was mentally handicapped and/or autistic. The second clinic was different. They listened to us. The speech and occupational therapists became more than service providers; they were our support system during a dark time. My son made many strides, but the correct and primary diagnosis of Auditory Processing Disorder was still elusive.

The third provider outfitted us for a home-based computer program, and I obtained training in a multi-sensory language program so that I could try to help my son. Both the technology and the human sensory approaches proved to be very helpful to Ben in processing sounds and decoding written words. After three long years, he had finally been screened for APD, and all the paradoxes of his past development fell into place. Looking back upon that system, I wish I knew then what I know now. My husband and I had never heard of APD before. The disorder was new to us, despite the fact that my husband is a child/adolescent psychiatrist, and I am a registered nurse and hold a doctorate in communications. Because of this lack of knowledge, we navigated the system without significant guidance and fortunately found – literally, stumbled upon – some very useful tools. But this gunshot approach is risky and can waste valuable time.

That’s why I wrote my son’s story in LIKE SOUND THROUGH WATER: A Mother’s Journey Through Auditory Processing Disorder. It wasn’t so much to put my personal memories to rest or to provide a diagnostic or therapeutic road map for others. I’m not qualified to do that.

I am qualified to tell it like it was and to provide hope – to tell a parent that they are not alone as they try to understand what they are facing. The self-blame and sorrow and grief that engulfed us at times are rough waters that we all share. I believe that through this sharing of universal emotions and common experiences, parents can feel a sense of empowerment as they try to find help for their children.

Like all youngsters, children with difficulties are measured by their height and weight. But they are also measured in many other ways. Tests – a dreaded word to many parents – can be confusing and discouraging, particularly when the test findings are misinterpreted or left unexplained. Educational standardized tests and diagnostic tests need to be put in perspective as well. IF these tests don’t match the present behaviors and past history, then the search for a diagnosis isn’t finished. Test scores do not equal the child. This is particularly true with a child who has APD, which can mimic and accompany so many other childhood disorders.

The child with Auditory Processing Disorder may experience several learning differences. But unfortunately at the present time, APD is not well understood by the educational community. I was lucky to find teachers and principals who were willing to learn. I wanted to write a book that could be shared, a book that a parent could give to a disbelieving teacher and say, "Perhaps this will help you understand."

When a child presents in a clinician’s office or an Individual Education Program (IEP) is discussed in a school conference room, the contributions of parents and significant others have to be recognized. Yes, parents will express emotions. But parental input is credible and necessary. Parents know how their children act in social situations, when they’re tired, and when they are anxious. They know what they were like as babies, and what their weaknesses and strengths are. They know who their children are, and they know when something is wrong.

The second reason I wrote this book was to encourage conversations about Auditory Processing Disorder. The discussions are needed, free from disciplinary territories and free from academic politics, yet founded on sound scientific research that integrates a multidisciplinary approach and a dash of common sense. A new and steady dialogue surrounding APD is critical, uninfluenced by school budgetary restraints and unencumbered by disbelievers.

Before we shut the door on really helping our children with labels and diagnoses that don’t quite fit, before we decide a kid is unmotivated, autistic, handicapped, or has attention deficit disorder, let’s look at everything the parents are saying and the child is doing. Let’s listen to each other. In writing my book, I honored parents –mothers and fathers – and the professionals who really understand APD, and their efforts to help children who are struggling. And I honored my son, Ben, a very special little boy. LIKE SOUND THROUGH WATER is his story, but really it’s the story of many other boys and girls who face APD early in their lives and of how they learn to communicate with the world and celebrate their lives.

LIKE SOUND THROUGH WATER: A Mother’s Journey Through Auditory Processing Disorder (ISBN: 0-7434-2198-1), February 2002, Pocket Books. By accessing Karen’s web site (www.karenfoli.com), an excerpt from the book, the introduction, and the foreword written by Edward Hallowell, M.D. can be viewed. A national author tour is scheduled to promote LIKE SOUND THROUGH WATER. This tour will include Teri James Bellis, Ph.D. and her book: WHEN THE BRAIN CAN’T HEAR: UNRAVELING THE MYSTERY OF AUDITORY PROCESSING DISORDER. Tour dates and events are available through Karen’s web site.