Burning Sea Horses

Happy Brain Awareness Week!

Last year I posted a link to what a child with APD might hear when being read, "Little Red Riding Hood." Ray and I were stunned when we heard it, because it brought back so many memories of when Jared would repeat what we said and it sounded like a different language. Now, his disability is a little more "invisible", as he doesn't do that too often.  There are occasions when the conversation goes something like this: "Are you burning cedar?" I asked Ray, as he threw another log on the fire in the outdoor fire pit. He nodded. Jared said, "Sea horses? You're burning sea horses?"

Most of us have seen Brain Studies, like the one below, posted on Facebook or in an email to see if we can read the statement. I saw it most recently on an APD Facebook page. This is what it said: "While this is visual processing, it is a good example of what it is like for someone with a processing disorder to hear what is going on around them. If the person reading it can imagine what it would be like to process at this speed all the time."

These poor children have to work so much harder than the rest of us, who don't have neurological disabilities.  I think this is a nice, quick "patience reminder" for folks/teachers who work with APD children daily.

Therefore, as God’s chosen people, holy and dearly loved, clothe yourselves with compassion, kindness, humility, gentleness and patience.  Colossians 3:12 (NIV)

Re-cap

After mentioning this blog to a few people, I thought I’d share a little re-cap. Most of my blog entries about diagnosis and help for Auditory Processing Disorder can be found in last spring/summer’s blog entries. We have now learned how to “cope” with this disability and we are in the phase of trying to do whatever we can to treat our son’s disability. The U.S. doesn’t even claim it’s a disability in the Medical Journal.  Insurance doesn’t cover the finances. This is why I’m spending more time teaching piano students and running my cake business, than actually writing in this blog, like I should. My boys are out of school this week, so I have cut my cake orders to spend time with them, and hopefully get some blog entries written.

My son’s diagnosis is this: Auditory Processing Disorder. The condition expresses itself in different ways. Some say my son’s condition is mild, others have said that he will intensely struggle for the rest of his life. There is a delay between his auditory nerve and the message it sends to his brain. He can hear perfectly; however, at times he cannot understand it. When folks talk, it can sometimes just sound like noise to him. And, when there is background noise, it’s even harder for him to understand what’s going on. That’s why this blog is called “Background Noise”.  It’s often hard for Jared to distinguish between noises. I know it’s overwhelming for him. I see it when I watch him at school, when the kids around him are reciting things aloud. He’s so busy looking around, trying to figure out what everyone is saying, that he mostly just mumbles along. {Picture someone who doesn’t speak English listening to the Pledge of Allegiance at a big event, looking around, seeing if he/she can “blend in”.}
 
Re-cap: We know the statistics. We have a treatment plan. We have hope.

Do you not know? Have you not heard? The LORD is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom. Isaiah 40:28 (NIV)

Understanding

We’ve been at a lake house the past few days with some friends.

It’s been a wonderful time, as my friends brought their two teenage daughters who love children. My children love their daughters. It was a perfect match. We played games, fished, laughed, and ate way too much. It got me thinking, though. Since Jared was first diagnosed with this disability, there hasn’t been a single day when I haven’t thought of it. Not one day. There’s barely a conversation I have with my child, when I don’t consider how his brain is processing things. It’s a natural occurrence. I don’t think I’m over-analyzing; it’s just at the forefront of my mind. I guess it’s like if you meet someone who is hearing impaired and reads lips, you kind of wonder if that person can understand each word you’re saying.  Thankfully, this family knows of Jared’s disability, so when I ask him to repeat what I said to make sure he understands, it doesn’t come across as too “control-freak-ish”.  They know I just want to make sure he can hear what I’ve told or asked him.

I think, in life, we often want to find people who “understand” us. It’s really nice to have friends who are also confectionery artists, who know what’s like when the humidity hits your fondant and your cake reacts differently than it did the week prior. Or, it’s nice to know that other folks often have issues with air bubbles in royal icing. If I discussed these things with my day-to-day friends, they’d probably just nod and say, “uh huh” or something. They don’t know the physical and mental pain of working on a cake for 13 hours. But, that’s okay.  This is the same with parents of APD kids. My friends probably couldn’t even fathom what it’s like to constantly - I mean, constantly - be thinking about your child’s brain whenever he’s interacting with anybody. They don’t know the heartache my son and I face, on various days, when certain things occur. (Of course, my heartache is because I see his spirit breaking). Each of us is walking our own journey in life. I couldn’t even fathom how my beautiful cousin has watched her little girl battle with “Natural Killer” cancer and been giving death sentence after death sentence for years. She may never find anyone who truly "understands" because it's such a rare form of cancer than no one in the US, and certainly no one her age, has ever had it.

Even though my friends might not understand what we go through, as a family, because of this “incurable disability”, they are here for us. As more and more folks are learning about APD, more and more kids are being diagnosed with it… instead of incorrectly diagnosed with other disorders. And, what does that mean? More parents, who can empathize with each other, are popping up. More parents, who don’t go one single day without considering their child’s brain activity, are out there. More parents, who see the chipping away of their child’s self-esteem on a daily basis, are looking for answers.  I wouldn’t wish this on any child or family, but it sure is nice to know there are folks who understand. Thank the Lord.

Great is our Lord and mighty in power; his understanding has no limit. Psalm 147:5 (NIV)

I Get It! I Get It!

I met a lady at the gym who has a son, recently diagnosed with APD. A few weeks ago, I met another lady who believes she has APD, although she was never diagnosed. Because there is so much information to share, regarding APD, I never know where to start. If I only have a few minutes to share the best “nuggets” of information, what do I share? Dr. Champagne’s information? APD Facebook pages? Phonetic links? There is so much information; I could never share it all in one meeting, much less a few hours of talking.

I look back at our journey over the past year and a half and feel blessed.  Jared is very fortunate to go to a school where he can have therapy. He’ll be continuing his cognitive therapy this summer with Dr. Champagne. He was diagnosed early, and we’re seeing him succeed in many ways. Although, I’m buried with my jobs, I continue to research and find more gems that may help my precious son.

Recently, I found this book:

This book was written to help kids who have been diagnosed with APD. It’s about a boy, John, who is confused. He is intelligent, but he hasn’t quite tapped into his potential, due to his processing disorder. Once he changes certain things in his life, in essence figuring out how to adapt with his APD, he succeeds. The author, Yvonne Capitelli, writes children’s books to help kids with self-esteem. And, as I’ve written plenty of times, kids with APD tend to have severe self-esteem issues.

When I think about this book, I can’t help but smile… knowing how far APD research has come in just a year and a half, since we started this APD journey!

Know therefore that the LORD your God is God; he is the faithful God, keeping his covenant of love to a thousand generations of those who love him and keep his commandments. Deuteronomy 7:9 (NIV)

Creepy Sleeping

I've noticed the sleepwalking more in the past few months. Before that, I only knew that sometimes I'd hear noises and just figured Jared talks in his sleep... which he does. When we were in Colorado last month, I noticed him walking around the hotel room at night and not knowing what he was doing. A few weeks ago, I heard a crash at night and I ran upstairs and Jared was on the floor, by his bed. He was in pain. He couldn't tell me what happened, exactly. When he did "wake up", he told me that he thought the bed was the ground and stood up and started walking (off the bed). He fell onto a book he had been reading and it actually caused his leg to bleed a little.

Last night, I heard his door open and footsteps running/banging around. Those footsteps sounded frantic. I heard him saying something that I couldn't understand. I kept saying, from downstairs, "Are you alright?" I had my hands full with work and couldn't get up there right away. He wasn't really responding to me, but I could hear him talking about something. A minute later, I went upstairs, worried he was sick. I went into his room... keeping it dark, because his little brother was asleep in his bed. I walked around the entire upstairs saying his name. He didn't answer. I raised my voice... "Jared!" "Jared! Where are you?" I went into his room again. His bed was empty. My voice got louder. I turned to leave his room and he was STANDING on top of his dresser, against his wall. I calmly asked him if he was okay. He had no idea what was going on. He was mumbling something. I picked him up and put him in bed. His eyes were open this entire time. It was creepy. His eyes stayed open as he was in bed, with his covers... asleep. Weird.

Things I'm thankful for right now: 1) that I don't watch horror movies or else I might not have been able to sleep last night; my sweet child became a creepy, silent statue, taller than I am, hiding behind me, 2) that we have a great home security system with door chimes so I'll know if he ever crosses into the unknown (after seeing him, I don't doubt it's a huge reality he could walk down the street, completely oblivious), 3) We have good insurance, because the probability of him breaking a limb is high, due to him enjoying  high places while he's sleeping, and 4) that I have faith in a God, who I believe will protect him. If not, I might never sleep again!

Now faith is confidence in what we hope for and assurance about what we do not see. Hebrews 11:1 (NIV)

Birthdays and Birthdays

The smallest month packs such a big punch in our household. I barely feel like I can come up for air. I will say, however, that I am so blessed. I am the mother of some seriously cool boys. I dig them. I love celebrating with them. I still can't believe that I have this precious gift of motherhood. Happy February birthdays to my boys!

The Lord will watch over your coming and going both now and forevermore.Psalm 121:8 (NIV)

Karate Time

We are in our third week of karate. We decided that after 5 seasons... or technically 6, if you count his season when he was 18 months old... we were trying a new sport. He didn't want to play soccer. It was hard for me to agree that he will not play soccer anymore. It was much harder than I'd like to admit. I'm coming to the realization that he won't be playing in the 2022 FIFA World Cup. That probably sounds silly to most, but hey, a mom can dream, right?

He's doing very well with karate. I had read that it was a great sport for kids with invisible disabilities, such as Jared's. He loves it. It teaches self control, which is something he really needs.

We're praying it'll be a perfect fit for the coming months!

Whatever you do, work at it with all your heart, as working for the Lord, not for human masters.... Colossians 3:23 (NIV)