Innovative Assistive Technology Gives Voice to the Voiceless
Ossining, N.Y. — In an ordinary household, on an ordinary day, a seven-year-old boy might see lunchtime as an opportunity to sharpen his negotiating skills and press for chicken nuggets when Mom offers salad.
When seven-year-old Antonio requested chicken nuggets over salad for the first time, it was anything but ordinary. In fact, until recently, Antonio couldn’t ask for lunch at all.
As a non-verbal child with significant cognitive and physical limitations, Antonio could only gesture and hope the loving adults who care for him full-time at the Sunshine Children’s Home could correctly read his cues. They usually could and always tried to the best of their abilities – they’ve been working with Antonio for much of his young life. But while his support team worked tirelessly to meet his daily needs, they wanted much more for Antonio. They wanted him to enjoy the things that typically developing kids can take for granted – things like choices, a sense of control and, perhaps most importantly, the feeling of connectedness that comes so much more easily to those who can communicate and interact with others.
It didn’t happen overnight. One by one, various modes of communication were trialed for a period of time, without success. No tool was able to meet Antonio’s complex needs and help his communication skills advance beyond basic gestures — until the beginning of this school year.
In the fall of 2016, Antonio was introduced to an app called Proloquo2go – a program that enables him to tap a picture on a tablet to express what he wants to say. Antonio had finally been given a voice.
For a boy like Antonio, there’s no such thing as an overnight success. His journey began with a single picture on a tablet. He received training. He practiced. He made mistakes.
And then one day, for the first time in his seven years of life, Antonio asked for his lunch.
The significance of this success was profound – and it was only the beginning. Once Antonio had mastered the concept of using the tablet to make a verbal request for a basic want, he was given the opportunity to communicate a preference – he could choose what he wanted for lunch from a selection of foods.
The Sunshine Children’s Home is specially equipped to give children with complex medical needs a safe, loving home, a school experience, social connections and recreation. And over time, Antonio’s tablet has been programmed to assist him throughout every part of his day, including nursing, recreation and school. There are buttons for morning meeting, for math and for physical education, so he can have the opportunity to actively participate in the program.
Antonio still needs reminders – he spent seven years using gestures to communicate, so at times he understandably reverts to his old habit of communicating that way. But his progress is significant. He has used his buttons to communicate spontaneously; he has requested for specific buttons to be added.
Recently, Antonio had the opportunity to go out into the community for a day to go shopping at a toy store. There, he achieved an important milestone: With verbal cues, he was able to use his tablet to choose a toy and interact with the shop owner.
Antonio still needs excessive verbal and visual cues as he works towards his next goal — increasing his core vocabulary in order to be able to formulate simple, three-word sentences.
The road toward greater independence is long. At the Sunshine Children’s Home, the caring, creative and innovative team will continue to see to it that Antonio has the support, encouragement and technology he needs, every step of the way.
The mission of the Sunshine Children’s Home and Rehab Center is to create a loving and supportive environment that provides the highest level of quality pediatric care for children who need it. Sunshine provides a quality home for children from birth to 18 years of age who require post-acute medical care and/or rehabilitative therapy, combined with psychological and developmental interventions. About 46 percent of the children in residence require palliative care, while an equal percentage of others improve enough with care to be discharged to a group or community facility, or ideally, at home with their families. For more information, visit www.sunshinechildrenshome.org.
Our happy home probably looks a little different from yours. When you’re nudging young sleepy heads awake, we may be lovingly checking vital signs on ours. When you’re serving your kids breakfast, we may be administering a life sustaining IV to ours. When yours are enjoying bath time with bubbles and toys, we may be giving a sponge bath to keep ours clean and dry. Yes, our happy homes look different–but they’re the same where it counts. For a child, home is wherever you can feel secure that your needs will be met–all of your needs, every single day. 
“We desperately need this space in order to improve the quality of care and living for our children and to make room for the overwhelming number of children who need to be here,” says Mosiello. “We have a long waiting list right now, and in addition to that waiting list, there are kids out there every day struggling to survive. I’m looking forward to being able to meet the needs of these families who are waiting.”
The high-spirited energy at Sunshine resonates with its supporters. Mosiello notes that Friedman, who has invested millions of dollars of his own money to fund Sunshine’s overall operation, has two critically ill children himself. She states: “He understands what that’s like. He sees it through the eyes of these parents.” For better or worse, perhaps that’s why the facility works so well, as Friedman can relate firsthand to “parents [who] have had their entire world rocked when their baby arrives early [or suffers traumatic brain injury]. The goal is to create a seamless transition for the families,” focusing on peace, serenity and healing in a time of crisis. For this reason, and to aid in this transition, Friedman and Mosiello made sure their oasis was encompassed in natural refuges.
