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)

Friday Morning with the Audiologist

Jared went in for his formal audiology appointment on Friday. We had to wait until he turned 7 to be seen by an actual ear doctor. (I still have very strong opinions on how horrible I think it is that there's an "age limit" for things like APD or dyslexia, but that's for another post.) I hadn't mentioned it to many folks because I didn't quite know how I felt and wanted to make sure it would really happen. Prior to going, a few people said things like, "What if the doctor says he DOESN'T have APD? Have you thought of that? What if it actually is just ADHD?" or told me stories about how Audiologists really don't "believe" in it, since it's not in the Medical Journal. Another person said, "Wouldn't that be horrible if you found out he actually didn't have APD after all the work you've done for him?"

In my mind, I never thought twice about APD. I've been researching since late 2010 and everything links up with Jared's symptoms. He's been in therapy and we're seeing strides. My biggest fear was that he wouldn't be able to get the formal screening. A lady I know tried to get her son tested a few weeks ago and the doctor found fluid in his ear and wasn't able to test him. Jared was extra sniffly this week, with allergies, so I wasn't sure if it had developed into another ear infection.

The doctor who screened Jared was very nice. It was a long appointment and she talked with us about all our concerns. The first test was for his actual hearing. Of course, he has excellent hearing (how many tests have we had in the past year and a half?) and passed it perfectly. The second test was for hearing/behavioral things, i.e. raise your hand or do what the little voice told you when it was quiet or loud. He did wonderfully on that one too. The third and fourth tests reflected the connection between the hearing and the brain. Guess what? Not good. Two words were quickly spoken into his headphones - one in each ear. He was supposed to repeat both words. He didn't do it a single time. He only said one of them. It was also difficult for him to hear certain words in one ear when there was background noise in the other. The doctor said that, for some reason, his left and right sides of his brain aren't communicating. Sound familiar? She's going to finish up his formal report and send it to Jared's pediatrician, Dr. Champagne, his school, and us.

One thing that she said that really stood out to me and I hope that everyone reading this remembers this ONE THING: For every one month a child, in his developmental years, has an untreated ear infection - it equals a THREE month delay in speech/auditory issues. Jared had so many untreated ear infections because he wouldn't let me know they hurt until they were already double, bloody ear infections. So, in other words, because my kid has a high pain tolerance or stoicism, he was delayed. That makes me so sad. That makes me feel like a crummy mother. I had no idea. Suddenly, many of the results from the formal testing that Dr. Champagne did made sense. She linked it to maturity and growth. It was nice for the Audiologist to link it to the ears. The cycle. The sad cycle.

The Audiologist also recommended an FM System for the classroom and said "it wouldn't hurt to have one in your home, too." When I asked her how much it costs, she said they are $3,000 - $6,000. I haven't yet determined how many cake orders that is, but I'll probably do that after we talk to our insurance provider to make sure that at least part of our summer hearing clinic/audiology/neurology appointments will be covered. If you know of any "D List" celebrities looking to drop $12K on a wedding cake, hook me up. No, seriously, the school doesn't have an FM System, so I'm praying for a generous donor to go that route first.

Our next step? Texas State University for more thorough diagnostic tests. "The premier hearing clinic" is the place where I graduated 16 years ago. We were referred to a specialist up there at the Speech-Language-Hearing Clinic. When I called to make the next appointment, I was told that they won't start scheduling the summer appointments until June 11th, but that he's the 11th on the list, so his 2 hour appointment will definitely be this summer.  

I'm feeling so weird about all this. I had called and talked to folks at the Audiology office AND Texas State when Jared was 5. I was told I couldn't do anything until he turned 7. Here we are. It almost feels like we are at the bottom of another big hill. The Audiologist told me to keep doing what we're doing... getting him cognitive therapy. After Texas State, we will probably be working with a pediatric Nuerologist. I'm sure I'll be calling the same Neurologist I called when he was 5, and not old enough. After that, who knows? We will continue on this APD journey and pray for more answers and assistance.

Break up your unplowed ground; for it is time to seek the Lord. Hosea 10:12b (NIV)

A Job Too Many

Working three jobs is kicking my butt! Every single moment of my day is filled to the brim with constant information. If it's not my three paying jobs, than it's my volunteer positions or my biggest job of all - wife and mother. 

It's been a tough week. Even with turning down 11 cake orders this week, I'm still overbooked. My church job has required extra time this week, and I feel like my personality has left my body. I'm a zombie. I don't like this. It's got to stop.

15 years ago... even 5 years ago... I couldn't imagine being in a place where I'm working multiple jobs and juggling so much in my life. I envisioned exploring with my children or spending each day seeking a new adventure with them. Instead, my mind and body are so clogged with rushing here or there to do this or that to prepare for this summer where my kids will be home all day and the APD therapy bills will start stacking up. 

I could go on and on and on, but I'm too exhausted to write anymore.

Look to the Lord and his strength; seek his face always. 1 Chronicles 16:11 (NIV)

My Little Man

Last weekend my boys and I went to Round Rock to celebrate a birthday of a friend. We had a blast. There was face painting... or, with my boys... arm painting.  

Even though we couldn't stay too long, as my work schedule was a little crazy that day, I would say that it's one of the best experiences I've had as a mother, thus far.

At first, I was kind of dreading it. Jared gets wild and crazy when there are a lot of kids running around in a huge park. He must always be exploring and hanging out with kids. He usually gets so "into" all the fun that he "forgets" to obey. It's draining.

When we first arrived, both boys played on the playground. Jared then went down to the creek and tried to catch tadpoles for a while. A little later, Jared came under the pavilion and sat by me. He didn't say a word. He just sat. My talkative, busy little guy just hung out with me. In public. With tons of kids running around. He thrives on being around other little kids. That was a first. 

The next thing I knew, he was across the pavilion talking to my friend, Roslyn. I was talking with another friend and would occasionally glance over there. He was deep in conversation with her. Five minutes passed. Ten minutes. Fifteen minutes. Could my little boy be holding a conversation for that entire time with an adult while all the little kids were running around him? I was in awe. I could barely hold my conversation. In that instant, I wish the few teachers and family members who thought he had ADHD could see him. He was not sick or tired. He was acting just like he does at home... calm and focused. I loved it.

On the way home I asked him what they talked about. He said, "I asked her how old she was." {hee hee}

The Lord has done great things for us, and we are filled with joy. Psalm 123:6 (NIV)

The Bird and the Cricket

Last night was the school musical for my boys. Zane was a bird.

Jared was a cricket. 

It was really cute. I sure am proud of them!

God made the wild animals according to their kinds, the livestock according to their kinds, and all the creatures that move along the ground according to their kinds. And God saw that it was good. Genesis 1:25 (NIV)