Remember when I told you my first meeting with the Student Study Team the Psychologist used the word "auditory processing" difficulties? For some reason that term, even though I had no clue what it meant, stayed with me. I came home and typed in any form of the word possible and let me tell you Google has a million plus links for "auditory processing"! Wow! It was insanely overwhelming, but I finally found the National Institute of Deafness and Other Communication Disorders. This site described a disorder known as Central Auditory Processing Disorder (CAPD) or Central Deafness. I read over the description and printed it for future reference. I finally had what I hoped was an answer. After all, education begins when you can put a name to it. I called my step-mom and read the symptoms to her over the phone (I would have called my husband but he was in the middle of a war zone in Afghanistan!). It was almost as if the description was written JUST for Emmie. She was having trouble paying attention to and remembering information presented orally, carrying out multi step directions, poor listening skills, needed more time to process information, had language difficulty (e.g., they confuse syllable sequences and have problems developing vocabulary and understanding language) and, have difficulty with reading, comprehension, spelling, and vocabulary. Of course I spoke with the Superwomen of the Student Study Team and they requested I have a hearing screening done just to ensure there wasn't any "hearing related" issues. We had one performed at a local school equipped with a sound proof booth and it was concluded that Emmie had normal hearing.
There is no cure for CAPD. I spent the next few months trying to help Emmie on my own. Trying to make things "click". Finally I realized we couldn't get the help we needed until we had the "label" on her medical record. I made an appointment with her Pediatrician in the hopes of getting a referral to an Audiologist for testing. We are a military family, so when you make a doctor's appointment the odds of seeing the same doctor twice has worse odds than playing the lottery and winning a fortune. The first doctor we saw was actually the Flight Commander for the Pediatric Flight. I explained the situation, she gave me the "oh yeah, I understand" nod and claimed she would place a referral in the system. A few weeks later, I received a referral for a pure-tone hearing test x 3. Through my research I had learned that a child with CAPD isn't deaf, they hear you fine, the problem becomes when they process what they heard...wires get crossed! I went ahead and scheduled one pure tone hearing test at the Audiologist we were referred to, again to ensure there were no hearing related issues. And again, her hearing screening was within normal range. Back and forth to the Pediatrician over the following months only gave us a total of 9 hearing screening referrals. But mixed in with one pure-tone screening referral was a referral for a place called The Listening Center in Walnut Creek, California. I jumped at the chance to finally get an answer as this Center had the ability to test for CAPD. I visited our insurance company Tri-Care and was assured the $450 evaluation was covered. I scheduled an appointment for the screening.
After scheduling the appointment, I was told the billing code on the referral was incorrect. Tri-Care had written a billing code for a consult and the Center provided free consults, so we needed a code for the actual evaluation. Again, back and forth with the insurance company only led to conclusion. Anytime I said the word "auditory processing disorder" and received that nod of understanding, the person had no clue! The Tri-Care nurse actually told me, as I sat there trying to find a way to get them to understand, that when they saw the work "auditory" they automatically processed every one of her referrals as a hearing disorder. That was the reason for all the pure-tone hearing screening referrals. I wanted to slap them in the forehead and throw a V8 in their face!
So, I paid the $450 myself to have the screening done. I checked Emmie out of school and drove her the hour plus way to Walnut Creek where we met Dr. Swain. Dr. Swain is a petite woman with beautiful blond hair and she has such a kind demeanor that Emmie didn't hesitate going into the room with her. Two hours later, my little girl emerged visually exhausted. She went into the playroom and curled up in a hanging hammock swing while I met with Dr. Swain. As I walked in her office and sat down the first thing out of her mouth was "Your daughter certainly has auditory processing disorder". I cried. Finally someone believed me, finally we had that rubber stamp of approval, and finally we could start to help her. The next 45 minutes was spent explaining what areas Emmie struggled, her basic test scores, and examples of how she answered some questions. A full 16 page report arrived 6 weeks later, but not before the Air Force decided we needed to move to a remote location overseas where Emmie would not receive the help she needed. More on that later as I am still boggled by how they came to that conclusion.
Anyway, bottom line, we had a name. We had a starting point for Emmie. I now felt like no one could stop her! It's silly how it took all those months to get someone to test her and tell us that this was real.