Surviving to Adapt

Like every child ever, Nate loves video games. Unfortunately, his options are limited to a select few iPad games that allow limited touch input for gameplay.

Thankfully, Microsoft has released something they call the Adaptive Controller, which has the potential to open many new pixelated doors for Nate. I’m sure you’ve all seen the commercials by now.  But, this entry comes at a steep cost, but not from Microsoft. And this brings us to the cost of accessibility. We’ll get back to this in a minute. First some history.

There was a time, from about 2011 until 2015 where Annie and I felt like all we could do was survive.

We were trying to learn how to care for Nate with his new condition and every week seemed to bring some new horror.

This is the cover to Nate's latest rap album

Eventually, things evened out and we began to think about how we could do things differently, better, more organized. Now, instead of wondering how we will get the day, I now wonder why Google seems to think I am so interested in El Chapo's wife and mistress. I clicked on one article about El Chapo's accountant like 3 months ago and now I can't go a day without Google pushing me a story about his wife.

Part of this new-found ability to think more proactively about life is the question of accessibility for Nate. And let me tell you, it's not easy, or cheap

I don't know if it's because the places that make accessibility equipment have such a small market that they need to have eye-watering prices to survive or whether it's because it's usually an insurer paying so prices can be higher or whether they know people need these things and have nowhere else to go, but accessibility is hilariously expensive. And when I say hilarious, I actually mean rage-inducing.

The bright side is Nate IS able to live a normal life in many ways. He plays with toys and in fact, playing with toys is even good exercise for him. We go to the movies:

He rolls his eyes and hates taking memorable pictures that we could have cherished forever if he would JUST LOOK AT THE CAMERA!

He even likes to go out in the rain and drive through puddles. Until the it rains too much and he has to wear the blue poncho. Sometimes it's fun to make him wear it anyway. He super loves it.

Back to video games: This year Microsoft released an Adaptive Controller for their Xbox. This controller is a hub that allows people to plug in non-traditional (to video games) input devices like; mouth switch, foot peddles, single large buttons, accessible joysticks etc...that disabled people often use day to day.  This allows them to play games with these devices and configurations built for their disabilities in lieu of a traditional game controller.

Frankly, it was a surprising move from Microsoft but super amazing.

This device is actually not that expensive, but what is expensive are the specialty buttons, joysticks, and switches that you need to buy from specialty vendors. I kid you not, one place charges $60 for a button. That’s right, you heard me correctly.  I said button, not piece of Ikea furniture

With how weak Nate is, we would need two joysticks and something like 4-6 buttons. So, I decided to make my own buttons and wire it all up. I know nothing about how to do this and it was aggravating for awhile. It was a steep learning curve. The upside is,  the whole thing, dozens of buttons and two joysticks, cost me less than the price of one button from the disability place.

I’m still troubleshooting some issues and putting the finishing touches on it but it should be ready soon. Nate and I will be able to play video games together. We are very excited. 

But this is a constant in our lives and we won’t often be able find less expensive work-arounds. His toilet seat for example cost more than twice as much as his iPad.  

But, BUT! Nate has been able to do so much more than I thought he would have been able to 6 years ago and the essentials that Nate needs for adaptability are always covered by healthcare. For everything else, we'll just keep figuring it out. 

He has major obstacles in his life and things are often difficult but loves to talk about how happy his life is and how he has the best life. So, you know, there's that.

Look at this kid go.