Monthly Archives: August 2018

First Day of School

Jace at Calypso

My brain had a great day at school! Mrs. G has my back most of the time and that makes me so much calmer. Many moments I’d start to worry but she would remind me that I could do it. We are a great pair!

My Nerves around New Things

jace standing

My nerves are huge when it comes to trying new things. I’m overwhelmed by the fear of messing up. I’m so sure I’ll get things wrong. You have no idea how many times I’ve given up because of my fears.

I’m also not a fan of mom making me be more independent. I’m not the most adventurous. What I am is a perfectionist. Majorly stressful! I’m always finding mistakes.

Mom always imagines that my skills get better and surprised me yesterday by naming all these new things I can do. I hadn’t even realized. They snuck up on me! Maybe if I have a new challenge I’ll think of many mom things to boost my confidence. I’m more mom than I thought. Maybe I’m coming out of my shell!

Music and My Brain, Continued

Mainly music is relaxing. Music might also help me talk. Today at Keller’s massage we heard music that was just instruments but otherwise the same as my music on B104. I could hear the words in my head! That never happens! I even said one out loud. I never thought to try this but will be listening to this music a lot now.

Music and My Brain

Music is maybe the best thing there is. More than anything else, it helps me calm down and talk. I think maybe my brain allows music in the manner that you hear, more than words. When I hear words my brain loses them, but music sticks around. Maybe when I hear music I’m using a stronger part of my brain. Mom will give you a link to an amazing article about this. [It is Oliver Sack’s A Bolt from the Blue.] And listen to Johnny Cash!

Traveling and My Brain

Jace in New Brunswick in August 2018, on vacation with his family

Note: Jace decided to draft this post in dialogue with his mother, Karen.

Jace: My brain missed my house while I was on vacation. Mania made it hard to relax. Mostly I’m homesick because my brain is majorly moving a million miles a minute making sense of all the new things. When mom helps me make sense of things, I feel better. Like when she tells me what’s coming. It makes me a lot more comfortable. My guess is anxiety plays a big part. My goal is to get better handling this because I love going to new places. Mostly mom must manage my expectations.

Mom: What about other tricks for managing expectations? Do you use any memories to help set expectations—think about what a new place or new thing reminds you of to make you feel more comfortable? 

Jace: No. My memories are so particular I may not be able to.
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Brain Camp

Jace at Brain Camp

Note: Mom and I got to go to Brain Camp at Muhlenberg College in July 2018. Here is what I wrote for my poster.


My brain works very differently than yours. More of my thoughts are images. This makes it possible to read really fast. I’m able to read a page in a minute. But it means I don’t hear anything in my head. I can’t talk to myself to encourage myself. I go through the steps as pictures. Music makes me so happy because I’m able to sing in my head. My memory helps with this.


My memory is amazing. My memories go back to when I was born and manage to cover all my life. Many memories are of hating how people helped me. Many times my mom would use all these cards to teach me words I already knew. I learned language just like anyone else but my body made it impossible for me to let people know.


I’m really smart but my body is dumb. This is why I’m a believer in you being your brain. My body misses what my brain tells it all the time. My movements are off sometimes and I’ll point to the wrong thing or mess up another way. Mostly I need to monitor my body. It’s not giving me help with how I make sense of the world.


Maybe the worst thing my body does is talk. It just can’t get the words out. They are in my brain as text but not sound and get stuck. When a word does get through, I’m so happy. I’m going to figure out how to change that text into sound. Brain machines are getting better, so I’m hopeful!

My Autobiography

I wrote this in second grade. It was the first time my parents heard about my brain.

My name is Jace Elliott Pooley… I have a sister Keller who is so nice. Of course I am a boy but I am different than you. I cannot talk as most of you can. Words are stuck in my brain and won’t come out… When I write words then I can let somebody know what I want to say.

When I grow up I want to be a scientist.

I also want no one to talk to me like a baby because I am very smart. Only I am unable to talk like you. Only boys and girls that talk get treated the correct age way.

Some way or another I will make a machine that will talk for me and it may work in the water so we can learn about ocean life.

When you see me in the future I will be a nominated award winning person who made a difference in this world