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.

Summer

My brother’s graduation

My brother is a high school graduate and I couldn’t be prouder…oh, wait, that is what my mom would say. I truly am proud of my younger brother for graduating. My younger brother is awesome and I am proud to call him my friend. Through nerf sword fights and surgeries, he has always been there. He is awesome without having to try.

Justin, dad, graduate brother with cap and gown, mom and Grandma all smiling

Summer things to do when you use a wheelchair

Summertime heat is pretty hard on me. My type of CP means I have lots of uncontrolled movement which means my life is kind of like a non-stop workout. So, I like doing cool stuff in the summer.

Some of my favorite things to do include:

  1. Go to a baseball game. If you’re in Minnesota, both the Twins and Saints games are fun. Get shady seats.
  2. Go to a futbol game. Again, in Minnesota, we now have a new Allianz soccer stadium. Again, get seats in the shade.
  3. Find hiking trails. I put this one in for my mom because she’s the one who likes to drag me out on hikes. Fresh air, sunshine, blah, blah, blah… There are a lot of nice paved trails in our state and local parks. I usually have to go somewhere to hike, because we don’t live in a walkable community – no sidewalks and narrow roads aren’t great for wheelchair users.
  4. Movies if it’s in the 90s and/or humid. What movies are you looking forward to this summer? Up next for me is the last in the X-Men saga: Dark Phoenix.

Marketfest Bears that Shine

If you’re in the White Bear Lake area on Thursday, I’m one of 22 Bears that Shine. We’ll be getting recognized at the main stage at 7:15. For more info check out the Manitou Days Facebook event page. Hope to see you there!

A couple things

Football/Soccer

My dad and I got last minute tickets and went to Allianz Field to watch Minnesota United FC vs. Houston Dynamo. We won 1-0. It’s great to be able to do more stuff now that I’m in my fourth week after the surgery.

It was too late to purchase parking online (all looked sold out) so we thought we’d see if we could find wheelchair accessible van parking in a lot near the field. It looked as if there were a lot of accessible parking spots available in the lots but since we hadn’t purchased parking online we couldn’t park there. We ended up finding a street spot where I could drop the lift about a block away. So, free parking is always good.

The stadium itself was amazing. We sat close to the Wonderwall fan area – so it was super charged with energy and excitement!

United is my favorite US team and AFC Wimbledon is still my favorite first love. Maybe someday I’ll be able to go see an AFC Wimbledon match in person! Until then, it’s United FC to watch live soccer!Justin in wheelchair looking at the field in Allianz Stadium

Bear that Shines

Guess what? I got an email that said this, this week:

“You have been selected as a 2019 Manitou Days Bear That Shines! Earlier this year we requested nominations of people who lived in our school district who have made an impact in our community, with the goal of recognizing 22 Bears that Shine (one for each day of Manitou Days). Your name was submitted with a description of why you deserved this award.”

So, if you’re in White Bear Lake on June 13th, stop by Marketfest. I, along with the other Bears that Shine, will be recognized at around 7:15 at the Gazebo in downtown. Watch for more info about this on the Manitou Days website.

I am honored that the person who nominated me recognized how I try to make an impact and be a voice for inclusion in my community. Thank you!

Recasting

I’ll be sedated on Thursday to get my casts replaced. Hoping to see my toes again and that they’ll scratch my legs before putting the new casts on! Please, scratch my legs!!! Ever notice how your legs itch even more when thinking about and writing about it?

Time to Act in Minnesota

According to the Arc Minnesota “the 2% provider tax on health care services is the main source of funding for the Health Care Access Fund, which contributes nearly $450 million to Medical Assistance in Minnesota. The provider tax is scheduled to expire or “sunset” at the end of 2019, which would leave a hole of more than $900 million in our state budget – placing health & human services and education funding at risk.”

This is a very real risk for me and others with disabilities who depend on Medical Assistance to help cover medical costs, that in my case aren’t covered by my family’s private health insurance. Medical Assistance and the waiver program that I’m on cover the expense for needed personal care support staff. Taking $900 million from the Minnesota state budget and not having a plan to fill that gap is short-sighted. Even me as a 20-year-old can SEE that it’s short-sighted!

My medical costs and need for care are not going to go away when funding gets decreased or goes away. It just means that those of us with disabilities and our families will struggle more than we already do. There will be very real people with disabilities who will end up going without needed care or will start getting denials for needed equipment. My Republican state senator will say not to worry, that I will get everything I need. But, it’s not true. You don’t get the medical care, support staff, or needed medical equipment you need, when there isn’t money to pay for it. I depend on Medical Assistance services and medical care to live in my community and do what I do to make the world a better place.

So, to legislators who are not in support of continuing the provider tax, think of your constituents with disabilities and their families. Think of me – would you say no to my power wheelchair? My support staff? My surgery to correct my messed up toes? My deep brain stimulation surgeries? My communication device or hearing aids? My physical, occupational and speech therapies over the years. My care costs a lot. Don’t cut funding for this care unless you address how you’re cutting the costs of medical care in this country. Don’t leave me hanging.

Contact your Minnesota state senators and tell them to NOT let the sun set on the provider tax in Minnesota! Not sure who represents you? Enter your address into this Legislative District Finder to find the contact information for your State Senator.

#DontLetTheSunset

5/26/2019 Update

Relieved that the Provider Tax was agreed to as part of the final budget negotiations with Governor Walz, Senate and House! Consistent and stable funding is so important for me and others with disabilities. Thanks to Governor Walz for his support of the Provider Tax! And thanks to my Representative Ami Wazlawik for supporting issues that matter to me and make a positive difference in my life and others with disabilities.

Justin in wheelchair, dad holding Justin's footJustin sitting on Mom's lap in chair next to hospital bedSmiling Justin laying on bed with casts on each leg propped up on pillows

Quick update from ME

Hey there, I’m BACK! Stopped taking the heavy-duty pain meds so have been able to get up to my computer again.

What did I miss most?

Writing. I love to crank the music and write. I’m working on a new novel now about a young woman who has cerebral palsy and her friend who is a boy, not a boyfriend. It’s still early, so working on the characters.

What do I remember?

First week – NOTHING. It was a blur. My parents told me I threw up a bunch in the hospital. No memory of it. I remember the drive home and that it was painful! I don’t remember that it was so painful that mom ended up calling the triage nurse several times.

It’s a thing with me and my CP – I get into what I think of it as my pain loop – I have pain. Then my muscles go into high tone and tighten up. This causes more pain. Which causes more high tone tight muscles. Which causes more pain. Which causes even more high tone tight muscles. And repeat. Repeat. Repeat.

At the end of the week, I went to the doctor. My incisions were looking good but then they ended up having to put the cast back around my entire foot. Ever have a cast? Remember the itching?

Second week – Pain has been decreasing this week and I’ve been able to sit up at my computer longer. Yay! I just take naproxen and acetaminophen now. And medical marijuana at night.

Highlight of this past week – I took my mom to see Avengers: Endgame for Mother’s Day. It was amazing! So, is my mom. Pictures are from our family’s trips to Wyoming and California in 2013.

Justin with his mom and brother with mountains behind

Day 10

Guest post by Mom (Kris Schulze)

Justin had his followup visit with his surgeon on Friday and all is looking good. We ended up removing part of the cast to be able to see the incision. So, now he has a cast over his entire foot since it was the only way to recast the part covering the big toe without redoing the entire cast. This cast will need to be replaced in 3 weeks. He will have light sedation for that as it’s the only way to hold his leg and foot still and steady enough to be able to recast. We’re still looking at the end of June for removing the pins which will be a heavier sedation procedure.

All in all, it’s been a pretty exhausting week for all of us. All transfers and lifting require 2 caregivers now. Pain meds in the middle of the night means 2 of us up – dad to hold Justin up and me to give him meds and drinks of water. The past couple nights he’s had some longer stretches of sleep between needing meds or readjusting legs and pillows (waking every 3-4 hours instead of every 1-2 hours).

We’re trying to cut back on the heavier duty pain meds during the day so that Justin has the energy to do a bit more of the things he loves to do – like read all of the well wishes on Facebook and his blog (thanks all for those!), finish reading a book, and catch up on his favorite YouTube videos (John and Hank Green, Daily Show, John Oliver, and music videos). This first week, though, time upright was mainly spent eating meals and towards the end of the week was able to spend a bit of time on his computer. Highlight of the week was watching AFC Wimbledon’s last match – they stayed up in the 3rd tier (Justin made me add this sentence)! Most of his time this week though was spent surrounded and propped up by pillows either sleeping or watching movies. Justin sitting in wheelchair with casts on legsHoping that this next week, Justin will have less pain, more energy and be clear-headed enough to write his own blogpost and have more time at his computer! The computer is where he is most independent – where he can read, watch what he wants, write and connect with the world. And, really hoping that we all get more sleep!

Innovative idea for the week – after Justin scraped the inside of his knee with his cast and multiple knuckle scrapes for his dad and me – his dad cut off the toes of his old Ankle Foot Orthotic (AFO) socks to cover up the rough cast. Justin now has scrape-free casts.Justin sitting in wheelchair by computer

 

 

Recovering

Written by Mom (Kris Schulze)

Justin’s surgery on Friday went well. Both of his big toes have been straightened out – 3 pins in his left toe and cut the tendons, 2 in his right and didn’t cut the tendons. The doctor wants to try to keep the pins in until the end of June. He had a lot of nausea on Friday after surgery – never know if it’s the anesthesia or combination of pain killers. He was able to eat Saturday morning, pain management was going better, and he was ready to get back to his comfy queen-sized bed and out of the skinny hospital bed – so were on our way home by midday.

IMG_20190426_073141294
Picture of Justin before surgery

It was a rough homecoming. The ride home proved very painful – the pain meds weren’t helping. It’s kind of a vicious cycle – when he’s in pain, his high tone kicks in, which means his muscles in his feet were tightening causing even more pain. Finally after a couple calls to the triage nurse and adding some of his medical marijuana to the mix, he finally was able to get more comfortable.

Today is going a little better than yesterday and we’re getting a better handle on the pain management. We’re up every couple hours through the night alternating pain meds. He’s resting more comfortably today although still is at around 8 for pain levels. Some of the more challenging things are figuring out new ways of doing things from transfers to positioning and figuring out how to make him as comfortable as possible. Thank goodness we have lots and lots of pillows in this house!

Thanks to all of you for holding Justin and our family in your hearts. Justin loves your messages of love and support. Please keep sending extra strength and healing vibes! This is going to be a long couple of months – taking them one day at a time…Photo of X-rays showing pins through right and left big toes