Ticket to Ride

Part of the reason I was so anxiously anticipating the end of the school year, was this itching, burning feeling I have had for months that neither dermatologist nor gynecologist could cure. Fear not, this entry is not entitled "TMI." It has been a voice inside, whining, nagging, ever louder (very similar to my two-year-old, come to think of it...) The voice says, "Language is the basis for understanding social behavior. Language is the vehicle. Without the vehicle, how will he get from here to there?"

I recently joined a couple of Facebook forums for APD/CAPD. Parents of kids with auditory processing disorders chat about all sorts of related topics. One thing I saw mentioned many times was called an Able Kids Filter. I researched it, and found out Able Kids is a clinic in Colorado that makes custom fitted filters to block out certain noises to help with Hyperacussis. I also saw CAPDOTS mentioned several times, but didn't know what that was until today. I digress... On the Able Kids website, I found information about CAPD I had never seen before. There are subtypes, four primary and two secondary, from what I can tell. The CAPD testing is recommended to determine which are the areas of deficit, and how to tailor treatment to address the specific impairments.

I started my search for a new provider. We have already been to one of only two clinics that perform CAPD testing, within a three hour radius of where we live. Since his previous hearing test was at age four, the audiologist who performed FMO's second pure-tone audiogram at Oakland Children's Hospital at age six, required we have the new one done before she would do a sedated ABR, which is what we requested and never got. After the appointment, we did feel satisfied that a hearing loss had been ruled out. We also wanted nothing more to do with her, since she told us they did CAPD testing after age seven, but that our son was on the Spectrum.

(Say it with me people, "Listen [expletive], You. Are not. Qualified. To diagnose that.")

She had the cajones to tell us that she had a lot of experience,"I've been doing this for three years." True story. Needless to say, we weren't going to see her again. When I called that clinic this week, I found out the other audiologist that does the testing in that office is about to go on maternity leave.

Over twenty phone calls later, I had gotten re-routed by multiple offices to the same doctor, RB, PhD. I left her a message and sent her a detailed email. I waited for two days before I called again this morning. I left a short message, to inflict lowest possible levels of over-annoyance. Within an hour or two, she called me back. After we concluded about a ten minute conversation, I turned to MAO and said, voice breaking. "She's our girl."

RB, PhD told me she has been mulling over the information I sent her for days, and waiting to talk to a colleague, but sadly the woman's husband just died. She realized when she got another message from me, that I did not know any of that, so she phoned to share why she had not called yet.

She is very interested in FMO's "special" case, and plans to construct a team, including an audiologist who knows ASL. She will be travelling for the next few weeks. When she returns, she will do an ABR to rule out Auditory Neuropathy. I asked her to clarify because I have not been able to comprehend the difference between that diagnosis and APD/CAPD, as all the symptoms look the same in print. The school nurse even wrote that FMO has Auditory Neuropathy in his vision/hearing screening report. RB, PhD told me one is neurological and the other physiological. If he were to have Auditory Neuropathy, then he acquired damage to the nerve connecting the ears and brain sometime between his second day of life and now, since he passed his newborn screening. The treatment for that diagnosis is hearing aides or cochlear implant.

If Auditory Neuropathy is ruled out, then she will conduct the CAPD testing, if he will cooperate. That will illuminate the subtype(s) and determine the specific listening therapies. She confirmed what Dr. C had said all those years ago. AIT (Auditory Integration Training), offered by many practitioners, is not evidence-based and it is not appropriate for people with CAPD. She told me about a program that has documented much evidence of success, which brings us back around to CAPDOTS.

This was the best phone call I have had in nine years. I haven't felt this hopeful about anything since we met Dr. and Mrs. C in 2009. I'm jumping out of my skin.

Whatever happens next month when he has the testing done, we will have more information than we do now, than we have ever had, for that matter. There are things that will be definitively ruled out and in. There will be treatment recommendations. There will continue to be a hard road ahead. No matter how bumpy it gets, I will keep driving that vehicle until we get him there.