Daily Learning

This is how we are reading nowadays, through the Visualizing and Verbalizing for Language Comprehension and Thinking Program. I read a story to Jared and he picks out the colors to visualize what's happening in the story. For example, "The red hen laid a white egg" might start the story. He picks colored felt squares to go along with it.

This book that we're using is a book to develop thinking through dual coding. According to the author, Nanci Bell, the stories that we read "are a tool to integrate visualizing and verbalizing - the dual coding of imagery and language - necessary for cognition. Aristotle said, 'Man cannot think without mental imagery.' Since without thinking and reasoning we are lost, it is my hope that these V/V stories and HOTS questions will assist individuals of all ages, sizes, and colors to reason and communicate better."

And, this is how we're currently working on math skills. Granny bought Jared a little netbook so he can work through math problems on line. He's also working on his computer skills.

How much better to get wisdom than gold,to get insight rather than silver! Proverbs 16:16 (NIV)

A Little Champagne Talk

Dr. Champagne and I had an interesting conversation about this "brain injury" work. She told me that ADHD was considered a brain injury and folks would be institutionalized until the 1930's, if they had ADHD. She said that it was classified as that until 1970. It's an older way to classify any neurological disorder like that. She then told me stories of how her grandma took her to these institutions to study folks. I asked her how old she was and she told me 8 or 9 years old!

She told me about a lady who was admitted to a mental hospital when she was five, because she was dyslexic, and had been there for 50 years. Her grandma also took her to prisons to study folks. She learned that so many inmates who were in jail, had brain issues. I was absolutely fascinated. She said that her grandmother wanted her to see folks so she could better understand the brain and try to help folks NOT get institutionalized or make decisions that could land them in jail. Dr. C. has been studying the brain since grade school!

If I haven't said this enough, I'll say it again. I feel that Dr. Champagne is the #1 person who can help my child. Her heart is phenomenal. She goes over and beyond and she KNOWS HER STUFF! She almost makes me want to go to medical school and study neurology. Almost.

 In addition to all this, take up the shield of faith, with which you can extinguish all the flaming arrows of the evil one. Ephesians 6:16 (NIV)

Concrete

A few weeks ago, Ray and I met with Jared's teacher and principal to recap his phonics program and see how we could help prepare him for the next school year. Out of all the things we talked about, one thing stood out: "Read books with him and to him, especially fiction books." Hmm... that seemed to be an odd suggestion.

When we asked why, we were told that he takes everything very literally. Some of the day-to-day things he says are, "That can't happen" or "How is that possible?" He is extremely inquisitive and wants to know how everything works or functions. At times, he'll even argue with the person telling a fiction story...expressing that the story could not actually happen!

Last Thursday, Dr. Champagne read a story to him and he was to answer questions after it. Unfortunately the story was something like, "You and your family went to the park yesterday. You went down the slides and played in the grass." When he was asked the questions, he kept arguing with Dr. C. and telling her that he did NOT go to the park yesterday. "Did you slide down the slide?" He'd say, "No. I wasn't at the park!" She explained to him that it's a story. He wouldn't budge.

My favorite one was where she asked him the question, "How many pennies are in a nickel?" He said, "None. You can't put pennies into a nickel." She kept trying to explain it, but he took the penny and kept knocking it up against the nickel and asking her to show him how it was even possible. He told her it could not be done. They could be stacked, but you could not put a penny IN a nickel. It's impossible. She was laughing so hard. She said, "He's SO concrete!" 

A time to weep, and a time to laugh; a time to mourn, and a time to dance;  Ecclesiastes 3:4 (ESV)

Is It In There?

Today I received a phone call from the administrator at Jared's school. She had good news. This fall they are starting an entirely new phonics program at the school. Why is this good news? It's geared toward APD kids. It's one of the best ways for ALL CHILDREN to learn to read. Even Zane will be starting with it in K4. She asked if I wanted to come to the teacher training for it in August. Preschool through 2nd grade teachers will be trained in it. Her excitement was evident in all that she told me. She said, "Jared's going to be ahead in some areas, since he's already familiar with it."

That's when I took the opportunity to tell her about my day yesterday... how Jared's skills vanished. Her first words were, "It's in there." My first thought was cynical... "Sure". She said that he's filed it away somewhere and we need to find the tools to retrieve it. Once we find those tools, it'll all be there. She described it like it was going to be a magical moment or something. I didn't realize how teeny tiny my faith was until she said that. My thoughts were still "Um. yeah. sure. I don't think so. You don't understand. It's gone." I mean, could she be right? She IS trained in APD. She knows about all this stuff. Has she seen this before? Why is she not as pessimistic as I am? Are there a bunch of drawers in the brain and it's been shoved in a drawer and we have to remember which drawer it's in and get it? What do we do until then? Learn it all again? This is so confusing.

I told her we need a miracle. She said that she would pray with me for that miracle.

Blessed is the one who perseveres under trial because, having stood the test, that person will receive the crown of life that the Lord has promised to those who love him. James 1:12

More Answers, More Tears

I brought home this perfect little bundle of joy from the hospital 88 months ago. He had ten perfect toes and ten perfect fingers. He had ice blue eyes and natural highlights in his hair that caused quite a commotion at the hospital. He had a smile that lit up any heart.

He is my "#1". I've always called him that. His daddy deployed when he was 4 months old and we were on our own for 18 months. He was it. He was my everything. He is my joy. He is my heart. He makes me smile like no one else can.

I adore his sense of humor. His laugh melts any mood. 

From the outside, everything seems perfectly normal. 

But sometimes I wonder how many swimming pools could be filled with the number of tears I have cried for him. Some days the new, or better explained, diagnosis seems too much to handle.  You would think my tear ducts would dry up. Why can't they? Sometimes I think, "No, this isn't happening. There's going to be a miracle and his brain will start working. It HAS to." Then I look at the piles of workbooks on my desk... cognitive strategies that I have to work with him daily...and know that this is our reality. "Techniques for Brain Injury Rehabilitation" is our reality. Did this "brain injury" come with the perfect fingers and toes at birth? When did this happen? When did my perfect son's seemingly perfect brain stop functioning? 

Pouring out my tears and heart to the only One who knows what's going on, each night after my precious son falls asleep, is my reality. The terrifying and sorrowful diagnosis that I received this morning is my reality. His working memory is low. His auditory memory numbers are low. Everything we've worked on. Everything he learned. His reading. His math. It's gone. It's like someone came and wiped out his brain. We took a break for a week and it's vanished. It took my strength and hope with it, and left me with pain and so many, many, many more tears for my child.  It's just like what happened when Ray came back from Iraq when Jared was 4. Jared suddenly "forgot" his alphabet. We thought he had a mini-stroke or it was the stress of Ray coming back after a year. Today I found out the answer. He needs a functioning memory to remember things.

Having the answers doesn't always make things better. In fact, this answer has me on my knees, tonight, praying for a miracle.

How long must I wrestle with my thoughts and every day have sorrow in my heart? Psalm 13:2a

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)