Black and White

We have known for a long time that Mykaya exhibits some (if not all) of the symptoms of Central Auditory Processing Disorder. Almost all of the professionals we have worked with have agreed with this, so we were told to take a trip to Grand Forks to visit Dr. Fire. He is the foremost in the field of Audiology and even though his office is 4.5 hours from Bismarck, everybody we mentioned his name to had heard of him. Talk about your reputation preceding you! We made the appointment in March and last Thursday, May 19th, Kaya and I took a trip across ND to see about getting a diagnosis.

You know, something concrete to go on.

Something black and white that can be pinpointed and treated.

Because as cautiously optimistic and relieved as I was when we got the diagnosis of Aspergers, it's still just a "possibility". It's still something we can't treat, and it's still something that is lifelong and "gray-area".  As a mom, I want to fix everything. And as a Casie, I want it to be fixed NOW! That's just not our reality. It's not a boo-boo you can kiss away and put a band-aid on. It's not even something you can get an x-ray of to prove.

Besides, that rug has threatened to be pulled out from under us recently. Her psychologist, Dr. Doerner, who was the guy that diagnosed her in the first place, after seeing her a couple more times, has decided that maybe she doesn't actually have Aspergers. Also, she has made such a HUGE improvement in function in just 4 months of occupational and speech therapy that we've decided to discontinue it. Yay Mykaya! Such a little fighter :) This makes me also question the diagnosis.  If it's a supposedly lifelong condition, why is she getting better so fast, with just a little help? This has been the MAJOR reason I haven't written a blog post in so long. Because I almost feel like I'm lying. "For the Love of an Aspie-Sorta, Maybe, But Getting Better" doesn't exactly have a ring to it. There's my honesty friends.

Back to our little road trip. We had a blessed 9 hours of alone time in the car. Just her and I. It was so nice to be able to talk to her and get her ever-changing opinion on everything. We stopped at a coffee shop in Jamestown and had a drink and a pastry and chatted with the barista. I tried to talk her into opening a shop in Bismarck, Mykaya chatted with her and thanked her for the "coffee". It wasn't until I left that I realized how lucky I am. It is such a proud moment when your child offers an unprodded thank you to a stranger. It's an even prouder moment when your child hardly talks to anyone and yet is still the most polite and loving child you know. That's my kid. Ha.

We got to Dr. Fire's office about 45 minutes early so we sat and played Hangman on my Kindle and chatted with another elderly patient that was also waiting. Once Dr. Fire got back from lunch, he took us right into his office. He was so warm and welcoming that Mykaya took to him right away. He asked the usual questions: Any pregnancy or birth complications? When did she start sitting, crawling, walking, smiling, potty-training, etc? When did you first notice something was wrong? Did she ever have a head injury? After all that, he took her in a sound proof booth and had her put on a pair of headphones through which she would listen to him and also a recording of some words/phrases. Throughout the testing, I could see her through a little window, and she could see me if she wanted to (she didn't).  There were times when her face was so contorted and scrunched up that I could swear she was going to cry. She was giving it her all, and trying sooo hard to stay focused and to do her best. I couldn't have been prouder.

He told me right away that he saw a definite asymmetry between her ears. Like, one ear was doing better than the other, but he told me he would have to wade through all the data and score her before he could be more specific. He told me he would call me the next day and to set aside an hour for the conversation.

The next day he called and told me that she has Moderately Severe Central Auditory Processing Disorder. He told me that children that have this to the degree that Mykaya has it, are pretty much unable to read or spell because there is a disconnect between the sounds/words they are hearing and how their brain interprets them. Suddenly, the 3 notebooks that she has kept since the first week of kindergarten full of words, and the obsession with asking how to spell EVERYTHING (movie quotes, names, objects, places, everything) made total sense.  She had developed her own coping skill to be able to function. She was memorizing how to spell and read, instead of learning the phonics way. I liken it to a deaf person having heightened senses of sight and smell. She is extremely visual, that's why the visual charts help her so much. Because she doesn't interpret what we say correctly. It also explains a lot of her social difficulties. She has an especially difficult time with background noise or listening to 2 different sounds/voices at once. Imagine trying to carry on a conversation on a noisy playground. Having somebody ask what you did this weekend while in gym. Or how about somebody talking to you while the teacher is talking. Might look like you struggle socially too huh? Makes the Aspergers diagnosis seem just a possibility now.

He told me that he will send me a lengthy report in a couple weeks that details what we can do for her at home, school, and also things she can do to help herself. One of my comments was "Boy, imagine how well she would be functioning if she didn't have this." Duh. His reply was, "Well, that's what we're hoping to find out." He would like to re-evaluate her in 3 years because there will be different therapies to implement at that time that her 7-year-old brain doesn't understand yet.

I am so happy to have something black and white that can be treated and proven and not taken away. Sounds crazy, but what are we supposed to do about all the gray?