Life as Carrie knew it totally changed the day she got her custom ear filter!
My daughter has always been one of those kids who could never remember or follow verbal directions very well. Memorizing and retaining information has continually been a huge challenge. At home and in school when someone was talking to her, she constantly would say "What? Huh? Pardon me?" She often just didn't seem to "get" what was being said or "misheard" words – for example, during testing she heard the word shoelace as "school light," and lifeboat as "light rope."
Teachers and parents often asked us if she had a hearing problem. Many, not so tactful peers, made comments under their breath about her being dumb or would say things like "Are you deaf?" or "Do you need a hearing aid?" It's important to mention Carrie also has very significant sensory differences that were evident within her first 5 or 6 months of her life, a different story in itself. Although Central Auditory Processing Disorder (CAPD) and Sensory Processing Disorder (SPD) are very much interrelated, this article is going to focus pretty exclusively on CAPD.
Carrie was diagnosed as having auditory processing challenges as a preschooler by her school speech therapist and received weekly therapy through 3rd grade. School staff and teachers sometimes seemed to misinterpret her auditory processing challenges as being low intelligence, something we knew wasn't the case thru private non-verbal testing that revealed just the opposite. This misassumption was especially evident in 5th grade when we requested that she be tested for the Advanced Math Program for middle school and were strongly discouraged by both her teacher and the testing psychologist who indicated they thought she would fail miserably which would be devastating for her. We let Carrie make the final decision about taking the test or not. In the end, she took the test and was one of only 2 students who qualified for the 6th Grade Advanced Math Class!
Things became more difficult in 6th grade when she began changing classes, and had to manage multiple teachers and classroom environments – not to mention the increased peer pressure to "be like everyone else..." We could see her CAPD was beginning to negatively impact her self-esteem. She was the kid who misheard the coach's instructions and would run the wrong way down the soccer field, the girl who wasn't in team pictures due to missing the announcements, the student who would typically forget half of her homework assignments, and the daughter who took 2 or 3 hours (with a lot of help), to memorize a list of 10 spelling words. It was the norm for Carrie to come home from school every day totally exhausted and spend 2 or more hours on her beloved therapy swing, trying to recover. We knew Carrie had auditory processing difficulties, but really had no clue about the extent of her struggles...
Then one day in spring of 7th grade (by some wonderful stroke of fate), I was at a conference where the speaker casually mentioned something about an ear filter for people with CAPD and this amazing clinic in Colorado. I flew out of my seat at the next break and quickly learned the speaker had been referring to a specialty ear filter developed by Dr. Joan Burleigh of The Able Kids Foundation in Fort Collins, Colorado; a custom ear filter that reportedly was life-changing for most users! At that time we couldn't find any information about it online; phone calls to speechie friends, local clinics, renowned universities, and even American Speech-Language-Hearing Association (ASHA), were all fruitless. No one had heard of Able Kids or such a filter. We eventually contacted Able Kids directly and learned we would have to take Carrie to Colorado to get her tested. Quite honestly, we questioned whether the whole thing was legitimate? Ultimately my husband and I decided that we / Carrie had everything to gain and only a few thousand dollars to lose – and off to Colorado she went for their first available appointment!
Able Kids Foundation does highly specialized testing using a one-of-a-kind comprehensive test battery that assesses how an individual "hears" on all 3 levels of the brain. They provide in-depth testing of the central auditory nervous system that targets several different areas, including cerebral cortex and brainstem function; testing that no one else in the country offers.
The testing Carrie underwent revealed she was only processing and understanding approximately 36% of what was being said to her. With the use of an ear filter, her processing / understanding went up to 72%. With the use of a filter combined with an FM auditory system, her ability to process and understand verbal information increased to approximately 91%. The examiner helped us understand how garbled language was for Carrie without an ear filter, and how conversations and commands sounded like a foreign language to her. Testing also showed she had a "short" processing delay (ie: 2 to 5 seconds) that made it especially difficult for her to retain verbal information, take notes, and follow videos. If a teacher was reviewing a 6-step process, by the time he was on step #6, Carrie's brain would still be on step #3. We also learned she was only able to retain 2-step directions in most settings. Remarkably, Carrie was usually totally unaware when she missed comments, instructions, and especially school announcements on the PA system.
Carrie qualified for a custom ear filter; a device that filters out overloading auditory information and allows her to process sounds as her brain intended. It dramatically improved her ability to understand auditory information and helped decrease the "auditory chaos" she experiences in really loud settings. In short, this amazing little ear filter totally changed Carrie's (and our) lives! For the first time, Carrie reported conversations were much clearer, and more understandable (and didn't sound like Shakespeare). She was able to remember and follow more steps due to hearing the directions correctly. Talking on the phone was a lot easier – and interesting enough, we figured out she wasn't able to discriminate ANY voices on the phone. Unless a caller identifies him or herself, Carrie typically has no idea who's she talking with – something she thought was the case for everyone. She also stopped saying "What?" and "Pardon me," stopped repeating herself so much, came home from school not nearly as tired as before, and even began enjoying listening to music! A handful of simple academic accommodations recommended by Able Kids made school even more manageable for her. Perhaps most importantly, Carrie began to blossom socially as her self-esteem started to grow!
CAPD is a maturation-based disorder that is constantly changing, it is not a disease. It is not life-threatening, but sure can be exhausting. Some people outgrow it... but for others, it can be a lifelong disorder. Will Carrie ever outgrow it? In her particular case, probably not. Regardless of how her journey progresses, we will always be eternally grateful for discovering Able Kids Foundation and the custom ear filter that changed her life!
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