“Another turning point, a fork stuck in the road”

Green Day has this quote from the song, Good Riddance (Time of your Life), that I keep listening to over and over and over. I am at a turning point in my writing career, with my first book I wrote and I just can’t decide whether or not to throw it away. It’s hundreds of hours of working on this novel and let’s be straight, it is terrible. I didn’t expect that I would write a “good” first draft. Not sure if anyone is capable of writing a good first draft?

I’m having more fun writing my new book giving voice to a young woman with athetoid cerebral palsy (CP) who uses a communication device. As a young man with CP, I haven’t found many main characters who look or sound or experience life like I do. We need more main characters who speak with communication devices or use wheelchairs or whatever. I need to be able to see me or someone I can relate to in the books I want to read.

I’m also at a turning point in college. As some of you may recall from previous posts, I tried to take an online class. It didn’t go exactly well and I dropped the class. And I am at a loss as how I want to keep learning or what I want to learn about. In college, I can get CART captioning that I need during a lecture or class. If I’m taking a class at a private or community Art or Literary Center, I’m not sure that they’d have to provide CART captions. I have some research to do to figure this out.

Lastly, you know about the toes, probably. My big toes are STRAIGHT. It still is a pain in the butt, but it’s less than before. No casts, check. No pins, double check. I have PT on Monday so can start working on transfers and building my strength again so I can get back to one person helping me with transfers instead of two. Here’s a picture of my dad adjusting my foot rests to work with my cast-free feet.Dad working on wheelchair footrests with Justin's feet strapped in

Speaking of the road, we did have an overnight road trip to see my grandma and grandpa for the 4th of July. My mom wanted to spend her birthday with her parents in Pipestone. Happy birthday mom! My first road trip in a long time and it was fun hanging out with my family! My parents and I are making plans now for a big road trip next spring to D.C. and Philadelphia. I want to go to the Disability Policy Seminar in D.C. in March 2020.

This is the video of the Green Day song I mentioned from YouTube.

Also, here’s a White Bear Pioneer Press photo of the Manitou Bears that Shine and a link to the Manitou Days Facebook post about my being recognized as a Bear that Shines. That was really nice and I’m honored to be recognized!

And here are a couple pictures from our Pipestone road trip.

Grandma, Dad, Mom, Justin and Grandpa sitting around table with birthday cheesecakeJustin with his grandpa

 

Everyday conversations and shortcuts

We might not think about how often we use shortcuts for everyday conversations. If you use an Augmentative and Alternative Communication (AAC) device like I do, you might streamline what you want to say. For non-AAC users, it is like texting. You know what you want to say, but you know there is only a few seconds and then the other person has to go or might start finishing what you want to say for you. So, you do what you can to get what you want to say, said as quickly as possible. For me, that means using the fewest number of keystrokes, because keystrokes for me suck up a lot of time and energy.

An example would be “I’m going 2 take pins & casts out mon.” This is true that I am getting my casts off and taking my pins out tomorrow (YAY!).

It is easier to use shortcuts and takes less time even though it’s not a grammatically correct sentence. When I use my Accent 1400 communication device, I use pre-programmed pages for quick common words and then switch to the keyboard spelling page where I can start typing a word and hope that it pops up in the word prediction choices so I don’t have to select every letter in the word. When those choices don’t pop up though, I use shortcuts.

Accent 1400 communication device showing "I can't believe you" typed out

I think sometimes it gets confusing when using a communication device or learning to use a device to know when it’s okay to use shortcuts and when you have to try to type out complete proper sentences. If you’re writing a paper or presentation, you may need to be more formal. For everyday conversations, though, I need to share my ideas as fast as possible, because I find that people aren’t always very patient. So, then I use shortcuts.

My top tips for talking to someone who uses AAC

My top tips for speaking to someone like me who uses a communication device?

  • Wait for me to type. Don’t keep talking while I’m focusing on typing what I’m saying next, because I can’t listen to you and type at the same time.
  • Talk to me and not my helper. This happens. People ask my parents or helpers a question about me and I’m sitting right there!
  • Don’t NOT talk to me because you’re nervous about talking to someone with a disability who uses a communication device. I want to connect, share ideas, and talk with you.  I apologize for the double negative!

YouTube Playlist of me doing stuff

I put some videos of me on my YouTube playlist so you can get a feel for why my Cerebral Palsy and uncontrolled movement make shortcuts necessary.

GOTV and CHVRCHES

GOTV

Busy week this week. For the first time ever, I went door-knocking with my mom. I’m hoping to get out more in the next month for Ami Wazlawik for MN State House 38B and my other favorites like Tim Walz for Governor, Amy Klobuchar, and Tina Smith for US Senate. Each of these candidates support disability rights and issues that are important to me, like affordable health care for all and protecting Medicaid.

So, get out and vote! Make your voice heard!

Chvrches

 

Another awesome concert at the Palace Theater in St. Paul. Chvrches was amazing and energetic! The wheelchair accessible seats at the Palace are great – no one can stand in front of me and block my view.IMG_20181002_205925370

As we get closer to winter, it’d be nice if they’d let those of us using wheelchairs enter by the shorter will-call line. There were really long lines and it’s easier for people in wheelchairs to get their spots before it gets too packed.

By the way, my Mom loves being able to type messages back and forth with each other on my communication device because it’s super loud and hard to hear when you’re at awesome concerts.