Going Full Time

...and then some.

About six weeks ago I left my full time day job. Barrel Rider Games and my freelance work in the industry are now my sole income. This is the fulfillment of a dream that began over a decade ago when Barrel Rider Games was created and while I’m absolutely thrilled to even be in a position where its a viable option, the circumstances aren’t exactly what I’d envisioned at the time. I wanted to talk a bit about how and why writing is now my full time job. In a previous substance post entitled Tiny Victories, I revealed that my now nearly ten years old daughter lives with Autism Spectrum Disorder, is non-verbal, and has severe motor planning, body regulation, and emotional regulation difficulties.

I don’t mean to sound presumptuous, but raising a child who requires near 24/7 care is something that, while most folks are sympathetic towards, cannot be truly understood until it is experienced. If you’ll indulge me for a moment, let me explain the largest struggle my daughter faces: involuntary motor action. My daughter’s body betrays her 100 times a day and more. She has amazing gross motor skills - that is to say her balance and her reflexes are uncanny. She has literally never fallen off a balance beam, taught herself to swim, and could stand straight up in my upraised palms with ease at 5 years old. Similarly, she can catch a ball that’s coming at her with amazing alacrity. She’s got the build and reflexes of a natural gymnast or swimmer. But if you ask her to do these things, it all falls apart.

Intentional, planned, motor activity is a moment to moment struggle. To give an example that correlates to what I mentioned above, if I yelled to her “Hey Trixie, catch!” and threw a ball at her it is very, very unlikely she could catch it. It’s a body-brain disconnect that fills her existence like a miasma. This includes the tiny activities we all take for granted: making a point with your finger, pouring a drink, putting a plate in the sink, bowel control, even things like focused eye movement, and (most delicately of all) speaking. This is called Apraxia.

Needless to say, this is absolutely infuriating for her. She sees everyone around her able to do a countless physical activities as easy as she breathes that are somehow beyond her reach. Top it all off with the fact that she’s an amazingly intelligent pre-teen who literally has no voice. Because of this motor planning struggle, American Sign Language is also impossible beyond large, sweeping signs like “hug” or “help.”

Intentional motor planning is possible for her, but it requires extraordinary effort. In the same way you or I might be exhausted after moving a heavy piece of furniture or spending hours solving a complex math problem, performing an intentional motor planning action is that for her. So if she tries really hard she might be able to set that glass of water on the counter without spilling it, but it’s like you or I moving a heavy couch up the stairs. And the more she does it, the more tired she becomes.

When she becomes tired and these motor plans become more difficult, involuntary motor activity begins to occur. This leads to unintentional motor planning loops. So, for example, she might be watching a video on YouTube and find herself unintentionally watching the same five seconds of that video and over again for several minutes or even hours. She doesn’t want to be doing that but her body refuses to listen to her mental commands. This often leads to frustration and meltdowns. During these meltdowns, because she is sensory seeking, this manifests as directed physical aggression.

Pinching, biting, kicking, punching, and headbutting are not uncommon. This includes potentially self-injurous behavior in an effort to get the extreme sensory input her body so desperately needs to regulate. One of my most horrific moments as a father was about a year ago during one of these meltdowns when she was coming at me full force with all of the above actions and looking at me with with pleading eyes and yelling out “Hep! Hep! Hep me!” (“Help! Help!” Help me!”) All while seemingly attempt to attack me with every fiber of her being.

Even working from home, I had to be available to drop anything and everything I was doing with no warning at a literal second’s notice to help her. To be present with soothing words and redirection and alternate methods to get the sensory regulation she needs. Even a room away, I couldn’t provide the support she needs. Given her age and size, my wife was having difficulty providing an appropriate and safe response to her extreme physical disregulation.

But fear not. Her life is not one of hopelessness. We’ve recently begun exploring Spelling to Communicate (S2C). You see, it is often assumed that children who suffer from ASD are also cognitively delayed or disabled. But every single congestive test relies on the child responding with some kind of fine motor planning; answering a question through the tap of a button or pointing to an icon, etc. Spelling to Communicate removes a lot of the fine motor planning. In short, a letterboard containing the alphabet is shown to the child and they hold a pencil or pointer and point to each letter to spell out what they want to say. Because this is a motion that originates in the shoulder and utilizes the arm, it relies less on fine motor. However, it requires daily practice and these motor actions still have to be built up.

We recently went to a 4 day S2C camp and Trixie was the star pupil. It was often a struggle, but she was able to answer multiple choice questions and even provide some open communication. We watched a video on Tornadoes at the camp and Trixie was able to answer all of the questions afterwards using this communication method perfectly and even provide some of her own insight. I was particularly proud when she was asked to name some other extreme weather types and she replied (in typical smart ass fashion) thusly: S O N I C R A I N B O O M. Sonic Rainboom, a special weather-like event from her favorite TV show My Little Pony: Friendship is Magic.

But concentrating on a video is a motor activity because you have to focus and control your eyes.You have to hold the pointer. She needs to guide her shoulder and arm. So, though this looks very promising, we have a long road ahead of us. If you’re interested in more information on S2C, I highly recommend the documentary SPELLERS.

My wife and I are also raising young Sam, my two year old son. Though not suffering from struggles as difficult as my daughter, there are some signs that he took may have ASD. But even if that turns out to be the case, we’re more prepared this time around and can get him the care he needs sooner than we were able to for Trixie.

This impacts every aspect of our lives, obviously. Now, let me be clear: My children and my wife are an absolute blessing in my life. All I ever wanted to be was a good man. Luke Skywalker, Clark Kent, and of course Samwise Gamgee. But you learn virtue by practicing it and I get the opportunity to practice these virtues every moment of every day. I am equally blessed to have a set of talents that allow me to work from home in a field I absolutely love.

Where the needs of my family truly impact Barrel Rider Games and my freelance career are in ancillary matters. Because of the need for me to be able to drop what I’m doing at a second’s notice for long periods then scheduling things like podcasts, interviews, or regular marketing are extraordinarily difficult. Even when such matters don’t arises, my house is a place of constant noise. My daughter will often make loud, discordant, seemingly random vocalizations that can seem confusing, distracting, or even frightening to someone who’s not living it day to day. Now, ask any parent who is raising a child with extreme special needs and they will tell you: We all make an effort to shield the rest of the world from these things because, to be frank, most folks just don’t get it. And how could they be expected to?

Now, I am a skilled creator. But I have to rely almost solely on word of mouth, a loyal customer base, and passive revenue trails from previous releases to make money. Being present in the industry, whether it’s at a con or on a podcast, is nigh impossible for me and it has cost me dearly in the past. I’ve had opportunities to attend, free of charge and as a guest, major industry conventions like GenCon and GaryCon. And its simply impossible.

So I work from behind a screen, gleefully creating these wonderful games that I love so much. I do it for my children and because I love it. And I’m so, so very blessed to have that opportunity. But if I seem late replying to a message, never seem to show up on a podcast, or you don’t see me at a con know that I’d love to be there to talk gaming with you. But my family needs me.

In the mean time, if you want to, you can snag a game or supplement from Barrel Rider Games. I want to keep my substack free, but if you like what you read here and are feeling generous, maybe throw a few bucks in my Ko-fi. It really does mean a lot.