Oct 21, 2014 09:00AM
By Kristen Hoffman
“Tres takes a medication that helps him fall asleep at night; it’s actually a heart medication for adults,” Renee Kiernan says. “One night I was giving him his medication and my daughter came into the room and wanted to show me something. I was saying, ‘What, honey?’ when I knocked the bottle onto the floor.”
In a flash, Tres had ingested at least three pills, six times his nightly dose and a potentially fatal quantity for a 3-year-old. Emergency personnel administered activated charcoal by force, “which would be hard enough for a neurotypical kid”, Kiernan says, but the treatment was traumatic for Tres, who could be overwhelmed with sensory stimuli even under everyday circumstances. Although she knew that the actions of the medical team helped save her son’s life, the experience was “horrible” for Kiernan as well.
“I was so new to the diagnosis that I didn’t know how to advocate for him,” Kiernan recalls. “And I had [once] gone to school to become a paramedic.”
Soon after Tres’s accident, Kiernan approached early childhood experts in the Papillion-La Vista school district with an informal training proposal. They then formed a task force with Planning Region 23, a group that coordinates services for young children with special needs who live within the school district’s geographic boundaries (Kiernan serves the group as a parent representative). Expecting to organize a single, one-time training session for local emergency personnel, she was surprised by the demand and level of interest from the community and elsewhere in the state. Soon Kiernan created what became Nebraska Parent & Responders Partnership.
“That’s what made me decide to start a nonprofit, where I could write the training materials and offer (a program), and it expanded from there,” she says, adding that the organization now also offers advocacy training to parents. “There really isn’t a lot of training out there. I don’t even have to market myself; people come to me.”
The organization’s training is conducted by Dennis Debbaudt, considered the leading global voice on autism and special needs training for law enforcement and emergency responders. Debbaudt is the parent of a young man with autism and in 1994 was the first to formally address the interaction between law enforcement and people with autism and special needs. He’s also one of most sought-after speakers in the autism community.
The Kiernans, who now have four children (Tres, 7; Cecilia, 5; Colin, 4; and Asher, 3), are involved in other autism advocacy efforts from heading parent social groups to organizing sensory-friendly holiday events, and Renee Kiernan has served on the board of the Autism Society of Nebraska-Omaha Support Network.
There’s always more that can be done, she says. Nebraska Parent & Responders Partnership gets regular requests for autism awareness training for various community professionals who interact with children and young adults. She’s also looking ahead to someday develop training for medical personnel who work with adolescents who have special needs—and the parents of these teens, too—perhaps on how to talk about puberty and sexuality or identifying potential abuse of vulnerable young adults who may be inhibited by communication limitations.
“Where I see it evolving is continuing to be in the medical profession and continuing to be advocating for parents,” she says.
In the meantime, the Kiernans are focusing on raising their young family and doing everything they can to ensure Tres has opportunities for the same childhood experiences as any other kid.
“When we were given the diagnosis, I thought they were going to tell me he was a genius and would need to start the first grade, and that was not what they told me. They said ‘He has autism and you need to seek a medical diagnosis’,” Kiernan says. “I just remember wanting to bawl, to cry and cry and cry in front of all these therapists. Then I was like, ‘You know what? I don’t ever want my son to see me shed a tear for autism or to hear me say I’m sorry he has autism.’ I don’t want him to hear me apologize for it, ever.”
The Kiernans are already preparing Tres to be his own advocate when he is older and more independent.
“Once T.J. and I caught up and educated ourselves and were okay with it, it was a small conversation: ‘You’ll have more questions later, but you may have noticed that things are different for you,’” Kiernan explains. “He loves that I talk about it, and that makes it okay for him to talk about it.”
Tres’s primary message, when he does talk about autism, is this: “We like to have fun. We’re just kids.”
And his mom is just a mom. “I go with my strength, and my strength is that I’m a mom. I wouldn’t say that I’m ordinary—not that I’m extraordinary, either—but, really, anybody can advocate and educate,” Kiernan says. “That’s my motto: Advocate, educate, repeat. And I want my son to do that, too.”