“Get that ghost, Henry. Get him. Now!” I heard my 6-year-old son yell as I arrived back home. It isn’t uncommon to hear him yell. But it is uncommon to hear him yell directions at his older brother.
I caught a whiff of toasted mini pizzas as I headed downstairs in search of my family and found an all-out gaming party. My three children, ages 10, 8, and 6 years old, were sprawled across the furniture and floor with my husband. Snacks and drinks lay scattered around as they played the 2006 Ghostbusters video game for Xbox.
“Check it out! Henry is using the adaptive Xbox controller,” my husband shouted over the game’s music. I looked over and saw Henry propped up in a bean bag chair. Each time his arm punched down on a big red button, a proton pack strapped to a ghostbuster’s back blasted energy beams on the screen.
A smile spread across my face as I watched my family play together. This should be a normal occurrence, but it’s not. Even though my children are so close in age, it’s difficult finding activities they can share.
Henry is my middle child. He was born early, extremely small, and in need of medical care. The day after he was born, I learned that I’d caught a virus (Cytomegalovirus) when I was pregnant, and it impacted the development of his brain. The prognosis was that he would, most likely, never be able to walk independently or talk. It was a diagnosis that forever changed how I view accessibility and inclusion.
For the first couple years of Henry’s life, he had very little control over his muscles. Before he was 1 year old, he was diagnosed with spastic quadriplegic cerebral palsy. Henry has participated in hundreds of hours of physical therapy and, over the years, has slowly become stronger. He can now hold his body up, move his arms and legs and stand for brief periods of time with support. But even with his progress, Henry becomes tired moving his body.
Despite his physical limitations, Henry is a smart and sassy kid who loves to play and be right in the middle of the fun. My husband and I do our best to adapt everything so Henry can participate, but it’s not easy. Henry attends a different school than his siblings, and most extracurricular activities outside of school are not set up to accommodate his limitations. Family outings, like amusement parks, present many challenges related to mobility as well.
Most of Henry’s adaptive equipment, like his wheelchair and his eye-gaze communication device, is expensive. We have to order it through an equipment clinic at a hospital or at Henry’s school. It can take four months or more before any equipment is approved by insurance and delivered for use (if insurance covers it). We need a specialist’s help to configure the equipment each time we receive an item, as well as when he grows and develops.
It’s not often that we find adaptive equipment that can be purchased off the shelf and used right away, especially with an activity the whole family enjoys. That’s where the adaptive Xbox controller comes in. It pairs right to our Xbox like a typical controller. The biggest difference is that it has large buttons on its surface, which are great for someone with limited mobility.
Henry can use the large black buttons on the controller, or we can hook up a peripheral button that is light to the touch. Each button can be configured to match any of the buttons on a typical controller. We can also use a variety of external switches at the same time.
For example, when we play Ghostbusters, the right trigger (RT) button on a typical controller fires the proton pack. We plug Henry’s external button into the port labeled “RT” on the back of the adaptive controller. Then, when he hits the external button, it performs the same function as if you were pressing the right trigger. We can also make both buttons on the adaptive controller perform the same function, so that if he overshoots his aim and misses one button but hits the other, he still gets the desired result.
