Getting a Way

I got too famous and needed a secret place.

[itsgettingaway]

Broke my own personal record for peeling a sweet potato: 1 hour 46 minutes. (at Minneapolis, Minnesota) https://www.instagram.com/p/Bqf0KjUFaah/?utm_source=ig_tumblr_share&igshid=1spsrz6o0ucqu

[itsgettingaway]

Ground beef looks like brains, especially on Halloween. Hey! Guess what! Between right now and November 2nd, AmazonSmile is donating 5%, ten times their usual rate, to charities like Laughing At My Nightmare! Take this as a sparkling sign from the Universe that you should totally purchase that frivolous item that’s been sitting in your cart for three months. . All eligible AmazonSmile purchases made through the link in my bio between now and November 2nd will support our mission of providing vital equipment to people with MD, and teaching children important lessons about disability, equality, and inclusion! . And don’t forget, you can ALWAYS use AmazonSmile instead of Amazon (it’s the same thing) to support our charity. Just make sure you have us selected as your charity of choice! If you need it, our EIN number is: 45-4553464. . Thank you so much! And have a very spooky day! . #AmazonSmile #StartWithaSmile https://www.instagram.com/p/BpmnKXllNgg/?utm_source=ig_tumblr_share&igshid=cr7exoouml72

[itsgettingaway]

My obscenely large head does not often come in handy, but tonight I saw an opportunity and took it. Swipe to see how my head size saved the day. https://www.instagram.com/p/BnpbQoxAv-o/?utm_source=ig_tumblr_share&igshid=tl4hxbq74zq3

[itsgettingaway]

While enjoying a nice evening meandering the streets of quaint Stillwater, Minnesota with Hannah, we passed a table full of 7-10 year old kids. Upon seeing me rolling past them, one of the children could not resist pointing and laughing maniacally at me. His younger sister cut him off, saying, “That’s not nice. You can’t laugh at that.” The boy, still laughing like he was being tickled, yelled, “I know, but he’s so small!” If I had a copy of my children’s book, “Not So Different,” with me at the time, I would have frisbee’d it at his head. Parents, please include the subject of disability when you’re teaching your kids how to be decent little humans. (at Stillwater, Minnesota) https://www.instagram.com/p/BnM6p3dgmj0/?utm_source=ig_tumblr_share&igshid=14s0w6wq6gnzf

[itsgettingaway]

Throughout the previous spring and summer months, I’ve had the pleasure of meeting with dozens of classrooms and libraries across the country via Skype to talk with students who read my latest children’s book, Not So Different. . Kids are endlessly curious about disability, and I thoroughly believe that the healthiest way to handle their curiosity is by allowing it to flourish in a safe, educational, and respectful environment. . “Virtual Visits with Shane” are designed to develop positive attitudes, values, and behaviors in school communities relating to inclusion and valuing differences. The goal is to increase student awareness, knowledge, and respect for people with a disability. In addition to those valuable lessons, it’s just a really fun way for kids to interact with an author, one who happens to use a wheelchair! . Because of some very generous donors who want to see these ideas being spread to classrooms far and wide, I am able to speak to classrooms for just $50, a rate much lower than your average speaking fee for a published author! The icing on the cake is that this $50 goes to our charity (@laughingatmynightmareinc), helping us continue to spread these ideas to as many children as possible. . We can make this world a more accepting place, but we must work together to share values of empathy, equality, and respect in the children who will become leaders of tomorrow! Hosting a “Virtual Visit with Shane” is a simple, fun way to accomplish that outcome together! . Signing up for one of these presentations is easy! Just shoot an email to me ([email protected]) and include your name, location, grade level, and I’ll work with you to get your presentation scheduled! . THE VERY BIGGEST THING YOU CAN DO TO HELP US is to tag teachers, administrators, and parents in the comments below. More visibility = more kids we can reach with our message of disability awareness! https://www.instagram.com/p/BnFUrFcgT6I/?utm_source=ig_tumblr_share&igshid=1rwmert2wkx16

[itsgettingaway]

Due to forecasts showing rain for the remainder of the day, Hannah and I are cancelling the London meetup. We’ll be wandering around the British Museum this afternoon, so if you were planning on attending the meet up, and you’d still like to say hi, shoot me a message and we’ll find each other in the museum!

[itsgettingaway]

My wheelchair and I made it to London unscathed, thanks to the remarkable efforts of the other two members of The Merry Trio. #TheMerryTrioTakesLondon (at London, United Kingdom)

[itsgettingaway]

Look out London! (at Minneapolis Int'l Airport)

[itsgettingaway]

The bag on the back is just 68 bags of Funyuns. #london

[itsgettingaway]

This is my not messing around face. Doing everything I can to ensure my chair is not destroyed during the flying process! Ps- can someone who speaks French help me translate this? It would be a huge help for our flight out of Paris. Thank you!

[itsgettingaway]

When flying with a wheelchair, it’s important to have a plan. Tonight, I wrote our plan. #squirmyandgrubs #wheelchairlover #wheelchairuser #disability #accessibility #disabilityawareness #disabilitypride #relationship #spinalmuscularatrophy #musculardystrophy #travel #traveling #delta @delta

[itsgettingaway]

Turning my squid tentacles into high-utility lobster claws of functionality and death...and by the look on my face, having a damn good time doing it. (at Saint Paul, Minnesota)

[itsgettingaway]

Spinraza injection #6 was a success! Time for a celebratory beverage (and a much-needed shave). (at Regions Hospital)

[itsgettingaway]

View this post on Instagram

Before they can inject the Spinraza into my spinal cord, they have to remove a few ounces of spinal fluid to guarantee that the needle is in the right spot, and not in, like, my spleen. Last injection, it took 45 minutes of digging before they got the spinal fluid to flow, so here’s hoping this time is quicker!

[itsgettingaway]

NEW VLOG EPISODE will be up tonight! We didn’t plan this one, but I needed to get some stuff off my chest about my Spinraza injection tomorrow. I hope you’ll love it :) stay tuned... (at Minneapolis, Minnesota)

[itsgettingaway]

The surrounding area is strewn with the skeletal remains of thousands of other wayward wheelchair users who, just like me, could not pass through the violently dense vegetation. (at Minneapolis, Minnesota)

[itsgettingaway]

Some pretty sweet news to begin my weekend! My new insurance provider approved the coverage of Spinraza, which is the drug I receive to stop the progression of my disease. The copays and coinsurance and all that jazz will still be ridiculous, but this approval was a large, important step! Yay for muscles! #musculardystrophy #spinalmuscularatrophy #spinraza #drugs #insurance (at Minneapolis, Minnesota)