Tag Archives: autism

An Honors Course 
in Giving

October 16, 2018 by
Photography by Bill Sitzmann

Jenna Liakos has already learned the immense value of volunteerism in her community—having completed countless volunteer hours contributing her time to the Omaha Warriors (her little sister’s softball team), the Aksarben Ball, and the Bickford House (through All Saints Episcopal Church). 

In fact, one of her most valuable experiences, and lasting relationships, has come from working through the Munroe-Meyer Institute and volunteering with their Circle of Friends, a social club for people with autism. She started working with kids who have disabilities because, “my brother volunteered at Munroe-Meyer, then my sister did it and enjoyed it, so I did it and really enjoy it so far.” In this capacity, she works with preschool children all the way up to kids her age. “I like being with the smaller kids, it’s just hilarious. Some of the things that come out of their mouths is so funny.” One girl who she enjoyed volunteering with loved the Husker football team, so she makes the volunteers and other kids stack their hands in a team “huddle.” Liakos enjoys interacting with the kids and their imaginations while doing crafts, exercises, and cooking. 

It is Hayden Sommer, however, who has brought her the greatest joy over their four-year friendship. When he first arrived at middle school in fifth grade, he had trouble communicating with others. According to Liakos, since they started working together, “the amount of progress that we’ve seen is really amazing.” 

Hayden’s mother, Heidi Sommer, explains, “he’s pretty severe. Back-and-forth communication is quite difficult for him, but when he sees Jenna, you can just tell that he really likes her [by] his smile.” What is great about their relationship is that it has continued to grow outside of just the Circle of Friends, and Liakos continues greeting Hayden daily in the hallways at school. She continues in a gush, “I think what’s really genuine about Jenna is that…as kids get older, you see these relationships kind of derail, and she has not done that. She values everybody, she’s showing kids and adults in the community the way it should be done.” 

In fact, during Autism Awareness Month, Liakos and Sommer, along with the other members of the Circle of Friends, put together a public service announcement for PTI (Parent Training and Information) Nebraska, an awareness group for parents of children with disabilities or special health care needs.  

While it seems as though she keeps busy with all these volunteer activities, she also competes with a traveling softball team, sings in two show choirs, and participates in musicals. Yet Liakos truly enjoys the time she spends helping others. She says her parents taught her and her siblings, from a young age, to help out in the community and give back to people. 

And the tenacious student has it in mind to beat her older siblings’ immense numbers of volunteer hours served by the time she graduates from Westside High School. Her brother, Jonathan, accomplished 400 hours in his time, while sister Victoria completed 300 hours.

Liakos is extremely grateful for all that volunteering has taught her, particularly the lesson “don’t judge a book by its cover.” Having seen those who are struggling and going through difficult times, she has learned to not judge, but rather to listen to everyone’s story. “Some of the stories that I’ve heard from them,” Liakos says, “they’ve changed how I look at people and life.”

This article was printed in the Fall 2018 edition of Family Guide.

The Kiernans

October 21, 2014 by
Photography by Sarah Lemke

In 2010, Renee and T.J. Kiernan were still adjusting to their oldest son’s recent diagnosis of autism—trying to understand the complex condition and exploring educational, medical, and therapy options—when the little boy had a life-threatening mishap.

“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.”


Action for Autism

September 16, 2014 by
Photography by Bill Sitzmann

The dentist. The doctor. The supermarket. Taking a child into these situations isn’t always pleasant. For parents of children with autism, these and most any other foray into public can, on occasion, devolve into chaos.

“Children with autism usually have problems transitioning from a preferred activity to a new situation,” says Lisa Meridith, mother of 6-year-old Colton, who was diagnosed with autism at age three. “Many children are highly sensitive to sensory stimulation like smells, lights, noises, and textures. A trip to the grocery store may be quite stressful for a child. Meltdowns are very common over the slightest things.”

Caring for a child with autism has long been a lonely road for parents. Gail Werner-Robertson and Scott Robertson, who themselves have two sons diagnosed with autism, wanted to change that. In 2008, they founded the Autism Action Partnership, a nonprofit foundation that provides programs and information for parents of children with autism across Nebraska.

“They understood the difficulties of finding good services for their kids,” says Sara Barada, interim executive director and program manager for the Partnership.

Meridith says she became involved with the Autism Action Partnership, known as AAP, because she didn’t want other parents to feel as helpless as she did when Colton was first diagnosed. Once she became involved with the foundation, she says, she knew she had found her “life mission.” She wanted to be an advocate for those impacted by autism.

Besides offering programs, AAP also funds programs that augment autism services throughout the state. Circle of Friends, which began with just five schools, has now expanded to 190 schools statewide. Teachers in the program not only work with autistic children on social skills, they also educate children with whom the child with autism associates. When children know more about autism, they tend to be more supportive of the child with autism.

“We’ve found that once you explain to children the reasons why someone might be [acting differently], you see a reduction in bullying,” Barada says.

“This group has allowed Colton to make some lasting friendships with his classmates,” Meridith states. “Before this, Colton could not name one person he could call a friend.”

Other helpful services offered by AAP include the Resource Center, which is available on their website, www.autismaction.org. Whether families with an autistic child need to find a dentist understanding of autism or language therapy services, the AAP website is a sort of one-stop shop. The Resource Center also includes services for those with autism over the age of 18, which, Barada says, can often be difficult to find without help.

“With the AAP programs and the in-home ABA therapy he is receiving, Colton has overcome many obstacles since he was diagnosed,” Meridith says. “I have one wish: that people educate themselves and their children about autism. Teach them that different does not mean less.”


Family Success Story: The Dotsons

May 25, 2013 by
Photography by Bill Sitzmann

“Date night” is not a term often used in the Dotson household; however, “family” is. After 11 years of marriage, David and Susie Dotson have experienced more than any parents should, but they still find time to come together as a family and cherish the moments they have. “Our marriage has shaped us to be better parents,” Susie explains.

“Strength” is another word thrown around a lot when discussing the Dotsons. Their first child, Noah, was born with autism. “He suffered from anxiety [when he heard] any loud noise growing up. He didn’t develop his speech to explain his fears and anxiety until around age 4.” Susie became focused on trying to help Noah by going to autism events, getting involved in discussion groups, and doing her own research. The Millard Public Schools district was able to get Noah started with homebound help at age 2, and eventually into Halo, a gifted learning program at Wheeler Elementary School, where he continues to build his communication skills.

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A couple years after Noah’s birth, Lily was born five weeks early and had to stay in the NICU for two weeks. She went home on a heart monitor and eventually grew into a healthy baby girl. Five years later, however, Lily was suddenly diagnosed with acute lymphoblastic leukemia, a type of cancer common in childhood and characterized by the overproduction of immature white blood cells in the bone marrow.

Susie remembers the day they found out. “I felt all summer long that something wasn’t right with her. I had mother’s intuition.” After complaining of stomach aches and her legs hurting when she played sports, Susie took Lily out of gymnastics, soccer, and swimming. She thought the schedule may have been too daunting for her little girl. “After a couple of weeks into school, I noticed bruising,” she says, “After about two weeks of the bruising getting worse and showing up in places that you normally don’t bruise, I made an appointment.”

“I feel like we are still figuring it all out. There are days that are not pretty. One of my favorite quotes for my family is, ‘We may not have it all together, but together, we have it all.’” – Susie Dotson

The night before Lily’s doctor’s appointment, Susie decided to google her daughter’s symptoms. Every result came back the same: cancer. Susie’s heart sank. “I took a photo of her eating breakfast before school that morning, knowing that this is what a normal day looked like before cancer.” Later that day, after five minutes of examining Lily, their pediatrician told Susie that her daughter had cancer and needed to go to the emergency room immediately. “Within 24 hours, she started blood transfusions, chemo, spinal tap, and a bone marrow scan. She has had over a dozen platelet and whole blood transfusions. She was put on high risk and only a 40 percent chance of making it the first year. She is now up to 65-70 percent.”

Lily’s fight not only took a toll on her but also on the Dotson’s marriage and Susie’s relationship with Noah. “Communication is key, and we are slowly finding that. During the heavy treatment, it was very hard to have a meaningful relationship [with David or Noah] with the high demands of Lily’s cancer treatment. But we are now learning how to heal as a married couple. I’m also loving my ‘Noah time.’ I feel like I missed a whole year of his life. I missed him.”

Lily’s treatment doesn’t end until January 2014, but the heavy treatment portion concluded last July. Lily can now do daily chemo treatments at home and go to school.20130407_bs_0015 Medium Copy

While life is far less stressful than it was a year ago, Susie says, “No matter what day it is, cancer doesn’t let you forget you’re fighting it. Once your family is hit by cancer, you are constantly in the battle…You never get to leave the battlefield.” The Dotsons still find time to be a normal family, with Lily dressing up the family Maltese, Santana, and Noah writing letters to the family beta fish: Patrick, Sandy, Rainbow Buddy, and Red Nose Clown Nose. And maybe soon, Susie and David will finally get that date night.

“I feel like we are still figuring it all out. There are days that are not pretty. One of my favorite quotes for my family is, ‘We may not have it all together, but together, we have it all.’”