RIDICULOUS

What a day! What a ridiculous day! I sure wish this "invisible" disability would quit being invisible.

We (and the school and Jared's pediatrician) received our formal report from the Audiologist. As I was reading this document, my jaw dropped. What happened to the, "Oh, he definitely has APD"? That's right. Perhaps since it's not in the Medical Journal, they can't formally write it? So, what is said? This is where it gets ridiculous.

The first part of the document talks about how great his hearing is. These were some of the items that were in BOLD in this document. 

• "Distortion product otoacoustic emissions testing revealed robust and present responses for all frequencies tested, 1.5-12 K Hz, bilaterally, which is consistent with near normal hearing. His hearing thresholds were 'normal thresholds bilaterally.'"
• "Filtered word subtest standard score was 8 which is in the 25th percentile rank for his age and considered normal."
• "Auditory figure-ground subtest standard score was 10 which is in the 50th percentile rank for his age and considered normal." 

Then we get into the last 2 tests - binaural integration and binaural separation. A low score on these "may indicate delayed auditory maturation or damage to central auditory pathways". (this part wasn't in bold in the report) And, guess what else wasn't in bold?  "Jared was able to repeat 15 out of 60 stimuli on the test of binaural integration test and 5 out of 20 on the test of binaraul separation." Did I mention that the doctor told me he only got TWO correct when we were there? I was actually in the room and only saw him get TWO correct. The next sentence is in bold, in the report: "The Competing Words score is considered borderline and the Competing Sentences score is also considered borderline for his age group." WHAT?! 15 out of 60 and 5 of 20 is borderline? And the kicker: ALL tests are added up for his diagnosis. So, in other words, since he can actually hear perfectly and aced those first tests, they counteracted his lower scores and his "standard score for all subtests was a 79. This score is considered borderline for his age category." "Borderline" was in bold." I was confused by all this, but not really upset.

Then there are about 9 more paragraphs... none in bold. In them, the doctor says that the parents might wish for an FM system to be in the classroom. Remember how she told me that we should have them in both home and school? Also, it states that if his parents wish to have further testing done, they should contact a pediatric neurologist. All that verbiage is near the end of the very long document... none of it in bold. And, when you're reading a long document, it's easy to only read the bold. Right?

What happened? How did things change so much from what she told me? Ridiculous.

This morning, I asked a dear friend of mine (and Hospitalist) who the top Pediatric Neurologist was in my city. She knew it right off the bat. She told me not to go to any other in the city. So, I called his office. The receptionist told me I couldn't get in without a referral from Jared's pediatrician. I thought, "Cool. She got a copy of this Audiology report." I called over there and the assistant said to me, "This report says everything is normal." I explained to her that she needed to get past all the words in bold and read to the very end of the report. Her words? "Oh, yes, this is very confusing. Why does she use the word 'normal' and then mention that he must have environmental modifications, both at home and school, to improve his ability to process auditory information?" I asked her to also check some other parts. She told me she'd get the referral right over there. She did.

I called the Neurolgist after that. I was told that it would be in September before they had an opening BUT they would review all the paperwork and DECIDE if they will even be willing to see us. I was told we'd get a call in 48 hours.

I was willing to give the Audiologist the benefit of the doubt before I found out that the cushy report she wrote will be the deciding factor between whether we can see a Neurologist. I took notes at the Audiology meeting, but now I've learned that I want to audio record every word a doctor says to me. This is frustrating. Ridiculous.

I texted my friend the update. She told me that she would ask the Neurologist to put it in a priority pile. Who knows how this will go, but how blessed I am to have a friend at one of the best pediatric medical centers in the US?! But, what about everyone else? Is this what all other parents out there have to go through to get help for their children who have APD, a disorder that has "no standard medical criteria to define it"? Ridiculous!

We will continue our weekly cognitive therapy and go to the listening clinic at Texas State. We know his right and left brain aren't communicating. Dr. Champagne told us 16 months ago and his current therapist AND the Audiologist also said it. Hopefully we can find a connecting point with his current treatment... and possibly/hopefully a Neurologist... and definitely PRAYER.

But I trust in your unfailing love; my heart rejoices in your salvation. Psalm 13:5 (NIV)