Author Archives: admin

Homework and Fun at Home

Jace in kitchen

More than how my brain works, I’m thinking about all my homework. I’m always having a new thing to do. Mom always has a new thing on her list for me and it drives me crazy! We reached a compromise this week so I get more music time and we make play more like planning a fun thing than work. I’m home way more on weekends and sometimes hate them because of all the work, but this one was so great. I got to listen to so much music. Mom made cards of amazing fun stuff and we played Legos. Home made me smile! And we went to two awesome concerts. They were so good with many chances to sing along and I did!

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.

Words in my Head

My new goal is to say more words in my head. I’m going to try when I’m answering math questions. My thought is that mom and I can point to a, b, c, d, e…

Maybe doing math can help me talk. All I’m doing is reinforcing talking – math and writing.

[How does that work?] When I write a word, maybe I’ll practice making the sound in my head.

[Was that working when we were doing math today?] About 10% of the time.

[Tell me about the 10% – What was going on in those cases? Did they have something in common?] Yes. All those times you [mom] helped by naming the letters before [the one I pointed at]. [Giving you a chance to fill in the blank?] Yes. Let’s do that to start.

Follow-up on Instrumental Music

Jace’s Instrumental playlist

My Instrumental playlist

All of my listening [to instrumental music] has had an effect. I’m singing the words in my head and out loud. I’m amazed how instrumental music makes me hear the words. I’m always doing it now! [Like when you’re getting ready to say something?] Yes! Many times, I’m already thinking of words in my head. If you know someone who is having trouble talking, try this!

[Here is a link to Jace’s instrumental playlist in Apple Music.]

Math

Jace at his Center for Talented Youth recognition ceremony

Jace at his Center for Talented Youth recognition ceremony

Math is my favorite subject in school. My mom and I work on math at home many days. Math is mom and my thing. Mostly mom helps me with the computer part. Mom always makes mistakes and I catch them. I’m not loving trig, but manage. I’m so excited mom and I can do algebra together for school. I’m gearing up for pre-calc through CTY, too. My math skills are maybe my most impressive, managing many numbers in my head. I am a great visualizer, so I put that to work making pictures of the answer.

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!