By Kathi Bliss
It ranks high in every parents’ worst nightmare. Your child is terrified, screaming, and can’t tell you why they are afraid. Crying, frustrated, and can’t tell you for sure what’s wrong. It’s a nightmare thousands of parents face every day.
Statistics provided by the National Autism Association reflect that a staggering one in 68 children born in the United States will be diagnosed with a disorder on the autism Spectrum (“on the Spectrum.”) Of those, more than 40 percent will likely be non-verbal – willing to communicate their thoughts and desires, but physically or mentally incapable of making the verbal connections to express them. While these children are often brilliant, clever and well-able to learn and grow, they are often left behind, because they are simply unable to engage.
In Lockhart, teachers, speech therapists and parents have struggled to bridge the gap with these children; they offered the world, yet never knew if it was being accepted, or understood.
Earlier this year, the Lockhart Chamber of Commerce and Lockhart Independent School District entered into an innovative partnership with Zach’s Voice, an Austin-based non-profit which provides iPads and communication software to parents with non-verbal children on the Spectrum. The partnership, which has already broken down the walls of communication for more than a half-dozen local children, in reality does so much more.
“Miracles are happy accidents,” said Jaston Williams, whose 19-year-old son, Song, falls on the Spectrum. Song has the added roadblocks of having been born with a double cleft-palate, and spending his formative years bounced between foster homes in remote Chinese villages which spoke varying dialects, before Williams adopted him at the age of 7. “He’s hilarious. He’s witty and quick and he surprises us constantly.”
These are secrets Williams might never have known, had the partnership between Zach’s Voice and LISD not provided Song with an iPad, and the Proloquo2go software, an innovative touch-based communication software that allows Song, and many others, to put words to their thoughts.
The iPads come to non-verbal children on the Spectrum as a gift from Zach’s Voice, but are actually sponsored through local contributions of monetary or technological donations.
“We have pretty specific guidelines,” said Abby Whitworth, the founder of Zach’s Voice, herself the mother of a child on the Spectrum who found the Proloquo2go software by happy accident, working with founding board member Viki Johnson, a certified speech language pathologist (SLP) who was working with Whitworth’s son, Zach. “But if someone meets those criteria, we’ll provide them with an iPad and a voucher for the cost of the software from the iTunes App Store.”
The criteria are simple. The program serves children, within the age range for standard public schools, who have a verified early speech delay with a suspicion of autism, and a “verified communication deficit that may be aided by an iPad and a communication app.”
Additionally, Zach’s Voice provides training for parents, who are required to commit to not only the training, but the exclusive use of the iPad for communication efforts, and for teachers and aides who come in contact with the students.
Already in Lockhart, nine students and eight teachers have been pulled into the program.
The partnership came into play in large part thanks to the Lockhart Chamber of Commerce and LISD Superintendent Susan Bohn, who sits on the board of Zach’s Voice, offering a school district perspective as well as legal advice to the non-profit, and serving the agency with her time and expertise for free.
“There was technology available for helping these kids to communicate, long before Zach’s Voice,” said Johnson, formerly a school-based speech language pathologist who currently engages in private practice. “But there was trouble with the logistics of getting the technology into the home, and getting the parents to take ownership of the equipment.”
Zach’s Voice has alleviated that problem, in wiping out the expense of purchasing the equipment, and providing the iPads and the software free to children who qualify.
“Something about the iPad ‘speaks’ to the kids,” Johnson said. “And it speaks to the parents. It’s much different than the ‘picture exchange’ cards that some still use, and better.”
Indeed, the Proloquo2go software can be expanded as the child grows to include more words, feelings and ideas, and to “speak” with different voices – even in different languages, including English, French and Spanish.
The preferred software, according to Johnson, was developed by a group of engineers – fathers with non-verbal children on the spectrum. At the cost of $250 per download, it offers an extensive array of sight-to-sound words, connecting pictures with objects, actions and emotions.
“Our teachers were quick to come on board,” said Monica Parks, LISD’s Executive Director of Special Education. “Some of them find that this has a ‘calming effect’ on their students, and it certainly helps us to meet their needs.”
The Zach’s Voice project in Lockhart was springboarded by a presentation at a recent Lockhart Chamber of Commerce luncheon, wherein Bohn and Whitworth addressed the business community about the ins-and-outs of the project. On the spot, donations poured in which allowed the iPads and software to be provided to several local children.
“When you give a child a voice, you give them the world, and the Chamber is proud to be a part of bringing Zach’s Voice to LISD,” said Keith Hester, chair of the Lockhart Chamber’s Board of Directors.
The work is not done, however, Whitworth warned.
“We do the very best we can with what we have,” she said. “Our board serves for free. No one associated with Zach’s Voice takes a salary, or any payment at all. Everything we receive, we put right back in to purchasing the iPads and the vouchers.”
At least three more children within the Lockhart ISD have been identified as qualified candidates; the equipment and funding is not yet available. The cost per student, including iPad and software, is $545.
“We know we can’t help every child,” Whitworth said. “That’s why we have the selection criteria, and we do everything we can to help every child that falls within those criteria.”
As a mother who spent a portion of her son’s life unable to understand his wants and needs, she understands the importance. As an educator and a mother herself, Bohn can’t deny the value – nor would she try to deny the value of a community partnership that allows every child to be brought to a level playing field, to be included.
And as a parent…
Williams, a humorist by nature and by trade, sees the downside.
“When we first adopted him, everyone brought Song presents,” he said. “Now that he’s ‘verbal,’ we know that he still expects those presents. At least now, he can tell our friends what he wants.”
Those individuals or local businesses wishing to make a donation to Zach’s Voice and help Lockhart ISD students in need can go to zachsvoice.org/donate or mail a check to: Zach’s Voice, 9824 Rias Way, Austin, Texas 78717.