Over the last year or so, Joel and I met regularly for meals at one or the other of our favorite Thai restaurants near where we live. Having worked together in the past and knowing each other’s interests, we would sit over our spicy Thai dishes talking about our interests in technology and our obsession with solving challenging problems. We discovered through these shared meals that though we were able solve large challenges at our day jobs, there was a certain void that needed to be filled.
During a late dinner one evening, I asked Joel about his youngest son, Zachary. We talked about the challenges he and his wife have faced with raising a child with special needs and how technology has helped them address Zachary’s thirst to engage with the world around him. After Joel finished speaking of Zachary’s progress, we decided that there may be an unmet need we can help fill. A mix of off-the-shelf technology that can help improve special needs children’s quality of life and ability to communicate, and enable them to discover what the world has to offer. Watching Zachary, I can say I have witnessed a kid with great rhythm.
The following is the story that Joel told me during that late dinner and what has now become the anchor for our journey into adaptive and assistive technology.
About seven years ago, my family’s life changed. Our second son Zachary was brought into the world. At a day old, Zachary experienced an event doctors characterized as “SIDS-like.” He stopped breathing, his heart stopped, and his brain lacked oxygen for a period of time. The result was that Zachary suffered damage to his brain stem, which manifested as cerebral palsy, as well as developmental delay and trouble swallowing. Zachary is not able eat by mouth or talk and has trouble keeping his saliva down. He must be fed via G-tube (gastronomy tube), which connects to a button on his stomach.
As a seven-month old baby, Zachary did not have a lot of strength and his limbs were “floppy” and typically just hung by his side. Even at nine months old he could not sit up. As Zachary grew older he was able to roll on the floor and by two years he was able to push himself up. Until the age of three, Zachary was severely delayed with his development.
To help Zachary improve his strength and his muscle tone, we utilized Physical Therapy/Occupational Therapy/Speech-Language Therapy (PT/OT/ST). It was not easy for Zachary, but he is a determined boy. As he approached the age of two, Zachary started standing with a specialized PT device called a stander. As his strength grew, he learned how to climb and explore his world. He loved looking out the window and exploring the outdoors. Zachary’s strength got a lot better between 2 and 4 years old; by the age of 4, Zachary was walking.
Early on, Zachary was interested in touchscreens, such as phones and tablets. But when he was around 3.5 years old, he tried his aunt’s iPad and loved it. Before this he was not communicating much at all, and we didn’t know what he was thinking other than trying to read his grunts and cries. We debated whether it was worth getting a touchscreen device for Zachary and decided to take the chance. When Zachary was almost 4, our extended family got Zachary an iPad 2. As all siblings do, Zachary’s older brother Benny at one point said, “I’m the only one without a tablet. No fair!”
Only four months into the iPad, Zachary was already a pro with the touchscreen and a fan of Angry Birds. He was very adept at learning how to navigate iOS. Wanting to encourage his communication skills, we bought Zachary some AAC (Augmentative & Alternative Communication) programs.
By the age of 4, Zachary was also taking photos and videos and enjoying video calls with family. Zachary loves looking at photos on our cell phones and browsing them on Flickr or on the PC. Because he wanted to use touchscreens anywhere possible, he would climb on the TV stand thinking every screen is a touchscreen.
We now have a Windows 8 PC with a touchscreen monitor and he loves it. He listens to Spotify, visits PBS Kids, browses pictures—did I mention he loves pictures—on Flickr, and even watches TV using an HDHomeRun network TV tuner app.
At the age of 5, we decided to get Zachary an iPad Mini to use only as a “talker” with the Proloquo2Go app. He was using the app at home even earlier on his full size iPad. We introduced it to school in kindergarten, and it is part of his IEP (Individualized Education Plan) at school. We’re taking it most places now so he can communicate his thoughts and feelings more effectively with us and with others. At the age of 6, Zachary was using the talker to communicate consistently at school and speech therapy. He counts and spells now and speaks hundreds of words using his talker. He also uses some sign language and some vocalizations, such as his version of “yes.” He has a keen interest to learn more.
Zachary is now experienced with the use of touchscreen devices and mobile apps and has the ability to play with his brother and cousins. He started playing Minecraft Pocket Edition on the iPad when he was 5, and he is quite the expert these days. He is able to create and move around worlds, build, etc. His brother is a great teacher. Zachary is socializing through Minecraft; when on the same Wi-Fi network, he is able to play with his brother and cousins in the same Minecraft world.
Zachary also loves music and dancing. His ability to communicate, such as talking, asking for things, and pointing to items of interest has all come together in the past year. Part of the development is a direct result of Zachary participating in music therapy class where he gets to play the piano, drums, bells, etc.
Recently, we introduced Zachary to the Phillips Hue lights. The Hue lights have been one of the most popular additions to our house. Zachary loves that they can be controlled wirelessly via mobile apps or a remote control, and the colors can be changed manually or through an app, such as the Hue Disco app, that listens to audio to create a light pattern. Zachary’s current passion is controlling the music. He asks for “music lights” via his talker all the time now, even at other people’s houses and in places without the Hue lights. He plays DJ using iTunes Radio on his iPad or Spotify on the PC. Coupled with the Hue lights, he’s in heaven.
More recently, Zachary has taken control of our PC, using a mouse, without a touchscreen. He learned the interface on touchscreens, but on non-touchscreen devices, he has now learned how to do almost everything via mouse and is learning the keyboard. This is a testament to his fine motor skill development, and it’s likely the use of touchscreens aided the developmental process.
This is not the end of the journey.
By finding the things that motivate him and with the use of the latest technologies, we find ways to help him communicate and develop.