Category Archives: about me

A letter to my middle school classmates

jace in maine

Here’s looking forward to understanding from my new classmates.

***

Many things are racing through my head. My bet is that I’ll love middle school and it will open many doors for me. I’m excited to join some clubs and enjoy again how it feels to be whoever you want to be without people expecting you to be a certain way. I can’t wait to start fresh!

How many times have you wanted to say something but been nervous and stayed quiet? Say you have an idea but just can’t think of how to describe it. How do you feel? Maybe another person doesn’t manage to understand how you talk. You probably feel bad, right?

Remember that when you’re around me. I feel those things all the time. Mainly I ask that you have patience and give me time to write. I am so much better at communicating that way. You give me that chance and you’ll see how nice and smart I am. Maybe make me your friend and you may manage to get used to these things about me. After a while, you won’t notice how I communicate.

Mainly I ask that you don’t make me talk about many things but do some talking to me. Tell me about yourself and what you like and anything interesting.

Please don’t treat me like a baby. It will make me all mad if you do. I’m super smart and can easily understand what you say. How about you just pretend I can talk and treat me the same as everyone else? I’m really a nice guy

My Memory and Me

Jace Pi Day

My memory is miraculous. I can remember being born and getting meningitis when I was one month old. Maybe you think this is a miraculous memory, but it is very debilitating. My memory is a burden on me for making progress. I can’t forget my past and I meaningfully need to forget. My memory has prevented me from making meaningful changes to my mentality. Meaning I need to leave behind my mentality. Memory has an anchoring effect. My memory is a gift and a curse. I hope to learn to forget the hard times I have had so I can be an optimist about my future again!

Feeling Better about Middle School

Nitschmann Middle School
I’m mostly feeling better about middle school. Mom and I got to ask Keller about her schedule and how things work. Homework time with Mrs. G is going to be awesome and will be what motivates me to get many things done. We’re going to have our own workspace I’m thinking in the library to study. No more gym which I’m awful at and no language which requires lots of talking. And I’m going to love music class. You made it, mom, how I wanted. You’re amazing. And I’m amazing too for making the plan all detailed.

Thank You, Next

Jace school picture
Home has been tough. I’ve maybe had the worst week ever. Being sick made me panic and that made me even sicker. My body wouldn’t stop moving. I think I named myself “marathon” for how much I ran. I’m going to lose weight. I finally took some medicine to get my panic more in control.

I’m longing to feel like myself. I’m close. I’ve been learning so much about myself, though. I’m going to mention a few things.

First, I am managing to make progress against mania in two ways. One is my getting obsessed with something. I can fight against that brain guy with my smarts and logic. The other is battling what my eyes do to my brain when I see something moving fast or with lots of designs. I hear screaming in my head. I can’t outsmart that but I can make that go away by using my amazing listening. Music is a lifesaver again.

Mom and I also listened to this book dad found about brains and how we think [Daniel Kahneman, Thinking, Fast and Slow]. That was awesome.

Mom says what doesn’t kill you makes you stronger. I’m proof of that!

How My Nerves Get in My Way

jace kitchen

The most hard question to answer is an open-ended one. I’m digging for an answer but am never sure it’s right. I’m mostly hating how I’m so scared to fail.

Talking works the same. Do you realize how open ended talking is?!

This gave me a lot to think about. I got to the point where my nerves have gotten better.

My attitude has changed. I am lame how I hate being wrong. Many times I’d rather say nothing. Maybe I’m holding myself back. But I’m going to give myself a break.

Mom, you were helpful when you pointed out that I could practice talking in my head. I’m going to try that. No more making myself too scared to try.

Music Therapy

From the archives!

From the archives!

Music therapy is awesome! Mr. Rob plays his guitar making music for us. Mom gets to sing, too. I am in charge of how many lines go. I have to sing the last part, which makes more words form in my head. Managing to say words in my head is major because that’s the first step in talking.

Mom and I sing all week to practice. Mom does Home [Phillip Phillips] and Hey Brother [Avicii] and Rihanna [Stay] and Firework [Katy Perry] and Scarborough Fair and Seven Years [Lukas Graham] on the piano which we learn from Miss Amy, my piano teacher. I knocked her socks off this week!

Anyone struggling to talk should try this. I’m amazed at my progress. Music rocks!

My Fear of New Things

Jace in Bethlehem
[What do you want to write about?] Maybe my being nervous about many things.

I’m always sure I’m going to make a mistake when it’s time to do something new. My brain insists I will fail so I don’t want to try. Maybe that might get in the way of my talking. I’m mostly worried about failing. My thinking is that I need help more than I do.

But if I am honest, I’m mostly making myself hate new things to make them go away. Then I never have to fail. But that gets boring. So here’s my new method: I’m going to tell myself to try and remember how mom hated teaching at first and dad give her tips and now she loves it. I’ve already seen this work for me with piano. I love it!

Another Smart Guy

WSJ article

Mom just read this awesome article to me that Mrs. G. managed to find! He’s mainly different than me but we’re both smart and have trouble talking. He’s so right about therapists getting it wrong!

I Was Born Unable to Speak, and a Disputed Treatment Saved Me

The Rapid Prompting Method taught me to communicate. But speech pathologists disdain it.

Wall Street Journal

Ido Kedar

Sept. 23, 2018 1:30 p.m. ET

Continue reading

Belly and Brain

CHOP King of Prussia

CHOP King of Prussia

My belly has been a problem for me forever. My memories many times are of feeling bad. Many manic moments were because my belly hurt. Lots more issues are the fault of my belly than my brain. I’ll make you imagine how hard it is: like answering a hard question when you just broke your arm. But my doctors never understood. They made me take medicine that made things worse and didn’t listen. My mom tried to tell them but they made her cry. All my teachers knew my belly hurt and the school nurse got it. She told mom about Doctor Boyle and dad got me digestive enzymes. My insides are really sensitive so I have to watch what I eat. And medicine stops my intenstines from cramping. I feel so much better and make so much more progress.

Mom deserves major points for going to all of those appointments. I’m mom’s biggest fan for that. Please, if you are a doctor, take belly problems seriously and be creative when you all make suggestions, and listen to moms and kids—all of them, even the ones who may not talk all the time. Maybe there are more kids like me.

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!