I am done with my first draft of my book!

Exciting week for me. The first draft of the book I’ve been working on for the last two years is finished and it’s exciting. I proved to myself that I can write a book. Not sure it’s a very good book or that anyone would want to read it. But, I can write a book.

What did I learn about writing a book?

  1. It’s hard. Being persistent and sticking with it when I couldn’t find ideas for what was next was hard.
  2. It was good for me to write on my own. I didn’t want my parents or others to read what I was writing because I wanted to prove to me that I can do this. I didn’t want other people’s ideas or feedback to influence my story for my first draft.
  3. It’s time to take a break from this story. I need some time away before going back and starting to edit.

In the meantime, I have lots of just typical life stuff to deal with:

  • Meeting new case manager/social worker today since I’ve moved over to adult social services.
  • Health stuff (stupid toe!) – Botox is scheduled for Wednesday.
  • Need to do all the paperwork to move to the new Fiscal Management Support model for Consumer Directed Community Supports waiver. I mentioned this in a previous post about how now MnDHS is requiring clients to become their own small businesses to hire and manage their support staff. Lots of paper work involved!
  • Keep writing in my blog.
  • Stay warm because it’s like 50 below Fahrenheit here in Minnesota.

Hello 2019

In 2019 I want to write more about the challenges in front of me to keep moving towards independent living. It’s not easy to figure all this out and I’ll share what I find out in case it helps others in their own lives or just so everyone has a better idea of what’s involved. And, of course I’ll also be blogging about political issues impacting disability rights, weird random stuff and my experiences with accessibility.

As you know, I took a break from Twitter and Facebook to work on my book, mainly. It has been a couple of weeks since I started my break. I probably wrote about the same amount in my book than if I had been on Twitter and Facebook. So, maybe social media isn’t as distracting for me as I thought. I’m okay with not being sucked into the non-stop drama of our current political reality. But, think instead of a total blackout, I’m going to just limit my time on social media – maybe 15 minutes in the morning and 15 minutes in the afternoon.

Here is what I will be focusing on over the next several months because all of these things need to be in place for me to live independently. I love my parents but like any young adult, I really would love to live in my own place in the next couple of years. So, how do I get from here to there?

My first step is that I need to get my Consumer Directed Community Supports (CDCS) Medicaid/Medical Assistance waiver figured out. This is the funding that helps pay for my support staff, adaptive equipment not covered by insurance, etc. I mentioned this in a previous post, Minnesota Department of Human Services is now requiring me to create my own small business to hire and manage my support staff. My parents and I will be meeting with several different providers over the next several weeks to decide if we’ll stay with our current provider or switch to a new one. Then I’ll need to complete all of the paperwork to become a small business and rehire all of my current staff and have them go through background checks again. The provider I choose will handle the payroll but we also need to figure out how to protect me from liability as a small business (this is more than just worker’s comp and unemployment insurance!). There’s a lot to figure out and it has to be done and in place by March in order to keep having the choice and flexibility for me to hire my own staff. This may all sound confusing. That’s because it is. Thanks very much DHS for making my life more complicated than it already was.

Along with figuring out support services, I’m also trying out new ways to continue growing as a writer. I’m going to try finding a class to take either through someplace like the Loft Literary Center, White Bear Center for the Arts or an edX online class. This could be a fun way to stay connected with other writers and improve as a writer.

And, guess what? It’s almost time for the new legislative session in MN! I’m going to try to get to more of the Disability Days at the Capitol to continue my advocacy for disability rights. Just got my tickets to the Walz-Flanagan Inaugural event at the Orpheum. I’ve heard back about wheelchair accessibility and also have asked if there would be CART captioning.

And, I have a whole lot of doctor and therapy appointments coming up this month – one or two a week. I’m getting botox on my lower leg and foot that’s been so painful on January 9th. Hoping it works.

I’m also going to keep having fun listening to music, watching AFC Wimbledon football (soccer) matches, going to concerts, and hanging out with my family. My younger brother is graduating from high school this spring so life is going to have a lot of changes this year for all of us.

Happy New Year everyone!

2018, see ya

3 things I will always remember

  1. Door knocking for Ami Wazlawic – my new State Representative! I think I liked that even more than being a delegate at the State Convention. I think the parties need to think about how they’re endorsing candidates so that more people can be involved in the process.Ami Wazlawic and Justin Smith smilingKris and Justin smiling
  2. Spoke at Charting the C’s Conference – a lot of work but felt amazing to be the keynote speaker and to present in a couple sessions with my mom, Jennie Delisi and Kim Wee. It’s awesome to have the opportunities to share my experience with such amazing people! Justin with 2 womenJustin smiling with audience seated at tables in background
  3. Writing my unfinished first draft of my book and my blog – I even moved my blog to WordPress which I’ve found very accessible and easy to use. To write is to be free.Justin looking at computer

Read more posts about my favorite 2018 things

Volunteering and participating in political process

VOTE on 11/6 if you haven’t already

Midterms on Nov 6: Clear choice for me in Minnesota

Midterms Part 1: People with Disabilities Vote!

Why it matters

Vote! My letter to the editor

Adjournment

Ready to convene

Show Up and Dance with Me!

Charting the Cs Conference

I’m here and stuff

Video blog for my latest update

Writing

Writing with WordQ (NO POLITICS, really!)

Happy summer

Anyone else have this problem?

 

Random thoughts about feet & stuff

These past two weeks, I’ve been having thoughts on my feet and stuff.

  • My feet are a pain. And because of that, I am in pain. It’s a non-stop hard-to-be-distracted-from kind of pain. My mom asked me what number yesterday. Because that’s what my mom does. I said 5 to 7. I’m waiting to see my orthopedic doctor in about a week.
  • Pain makes me exhausted. It’s hard to hold my head up when I’m exhausted. When I’m in pain.
  • leg wrapped in pillow strapped in wheelchairHere’s the thing. I don’t stand, not even to transfer to/from my wheelchair anymore because it’s too painful. Ankle-foot orthotics (AFOs) never worked very well for me because of my strong uncontrolled movement – my feet fought the AFOs and eventually I said “no more.” So, now my feet, are misshapen, aching, bent, etc. I don’t know what’s next for my feet.
  • Okay – it just is – you get used to it – all the things I tell others and tell myself. You get used to it when you’re me. Yes, I deal with it. We deal with it. But, sometimes it really just does suck.

Other random thoughts:

  • I have 140 pages written in my book.
  • I went to the Legislative Update by the Minnesota Council on Disability on Monday afternoon to learn about different legislative efforts for the next session. Just because the election is over doesn’t mean there isn’t a lot of work to do during the upcoming session. It’s important to make our voices heard! Finally saw my picture with former Senator Dave Durenberger in the hallway between the Senate Office Building and the Capitol. Cool!
  • I took a short break from my social media break. I had to jump on Twitter for the Project 4 Awesome fundraising live video by Hank and John Green Friday to this morning. They’re my favorite vloggers (video bloggers) and authors. Maybe next year, they’ll caption the live stream, so that people with hearing loss, who need closed captioning, can be included. I love that they’re able to raise over $1.5 million for good causes and wish that they’d also caption the livestream.
  • Last Doctor Who for the season is tonight. Will recharge my DBS battery and watch my now favorite Doctor! This has been a great Doctor Who season! If you got tired of watching in the last couple of years, you should give it a go! 

Too much social media

Social media is getting too many hours of my life, time that I could be using to read, write and get work done. Because of this, for the next couple of months I’m going to cut back my time on social media so I can focus on writing my first draft of my book and my blog.

I also need to learn more about changes to how my staffing will work with my Consumer Directed Community Supports (CDCS) waiver funding which is how I pay for support staff and other adaptive equipment costs not covered by health insurance or Medical Assistance. Minnesota Department of Human Services (DHS) is now requiring that I become my own small business to continue hiring my own support staff. Up until now, an agency had been the employer of record for my staff. There’s a lot to learn and lots of paperwork for my parents and me to wade through.  I’ll still be here, but I won’t be on Facebook or Twitter as much.

Here are three reasons why I am putting some limits on my social media:

  1. Experience: In my book, my two main characters are on the run. They can’t exactly use social media to contact anyone. So I plan to experience what my two characters are going through, to give a better description.
  2. It is time to shut down: After reading An Absolutely Remarkable Thing by Hank Green (absolutely amazing book!), I have been doing some rethinking about how I use social media. Sometimes it doesn’t feel like a very healthy reality.
  3. I have too much other work to get done and there’s lots of other fun stuff to do. Like on Monday afternoon, I’m going to the Minnesota Council on Disability’s Legislative Forum on Disability. Being a disability rights and inclusion advocate means I need to stay informed about legislation that impacts my world.

Starting next week, I’m taking a break for at least the next several weeks, and then will be checking infrequently. You can message me through my blog and my mom will be keeping an eye on my Facebook @JustinSmithWrites page if you are trying to reach me. My mom will tag me in any of her Facebook or Twitter posts if anything cool is happening with me.

Have you ever had a social media blackout? Any tips on how to survive it? Wish there were some football (as in SOCCER) matches to go to! At least I have AFC Wimbledon to watch online and FIFA 19 to play on my PC. GOAL!

Smiling Justin sitting in wheelchair at soccer match in US Bank Stadium

Writing with WordQ (NO POLITICS, really!)

As some of you may know, I’m writing a novel that is currently 130 pages long and going. I couldn’t have written this much independently without word prediction. I am using WordQ, a software that speeds up my writing process a ton.

WordQ is a word prediction software I had tried when I was in later elementary school. Then I stopped using it because my old Windows computer was glitchy and would freeze up whenever I was using that older version of WordQ. So, for many years, I didn’t have any word prediction software. I would either type a letter at a time with my middle right finger or hope that whoever was helping me understood my voice well enough so that they could type what I was saying to speed up the process. Either way, it was a long, frustrating process. Really Long Beyond Words Frustrating.

Three years ago, when I presented at Closing the Gap, I met Fraser Shein, the president of Quillsoft, maker of WordQ. My dad and I talked to him about some of the problems I had when I first tried WordQ and Fraser set me up with an updated version to try out. This time it worked great for me!

I start typing a word and a separate popup screen shows me 5 numbered choices so that all I need to do is type the corresponding number. I usually can type most words in just a couple key strokes. Huge time saver for me! HUGE!

I use WordQ for typing anything – emails, blogposts, social media, and most importantly typing my book. It is simply brilliant! If you’re looking for word prediction software, I strongly recommend that you try it out. Check out this video of me using WordQ as I prepared for Charting the C’s presentations last spring.

By the way, you don’t need to have a disability to use WordQ. My dad is just a bad typist, and it helps speed up his typing, too! Good tech can be used by anybody, whether you have a disability or not! To learn more about WordQ, please check out the WordQ website.

Below is a screenshot of how words show up in the word selection pane. 

Screenshot of WordQ Word Selection panel

Anyone else have this problem?

I am currently writing a young adult book and I want to let you know that it is totally tough to get your ideas out. I use one finger on my adaptive keyboard and there is the schedule. My work schedule is something I need to figure out because the schedule I have isn’t working for me. Playing online games should be after I write two pages and not before.