20 Mar 2017 A mother’s love: Advocating for son leads to special event

by Carolyn Ishee
Photos courtesy of leisa marie photography

"Thought about starting an Autism walk, or some kind of event yearly for my son and others in the Beebe community with ASD! Any other Autism moms or anyone really have any ideas? This is a great way to show the families affected we support them and to bring awareness and acceptance to Beebe!”

From this Sept. 21, 2016, post on Facebook to a major fundraiser slated for Saturday, April 1, Amanda Lindsey of Beebe has catapulted into an advocate for children with autism, including her 7-year-old son Kolten.

The Facebook post alone had 500-plus comments and took off from there. “Took off” includes the establishment by Amanda of the Advocates for Autism of Arkansas (Beebe Chapter). Now an officially designated 501(c)3 non-profit, Advocates will use the money raised from the April awareness event to provide scholarships to Beebe students who either have autism or have a family member who has been diagnosed with autism.

A graduate of Arkansas State University at Beebe as a certified EMT responder, Amanda is focused on Kolten. Everything she has learned about autism has been through her journey with her son and through hours and hours of research.

Autism Spectrum Disorder (ASD) affects 1 in 68 individuals nationally, and 1 in 45 in Arkansas.   ASD is a complex developmental disability. It is defined by a certain set of behaviors and is a “spectrum condition” that affects individuals differently and to varying degrees.

Kolten arrived via C-section in June 2010. It didn’t take Amanda long to notice there were developmental delays; Kolten never crawled. Instead, he pulled himself along with one arm. At 18 months, he started physical, occupational and speech therapies. He took his first steps at 26 months. At age 4, Kolten’s vocabulary was equal to an 18-month-old child. Kolten was diagnosed with a moderate form of autism in March 2013. Since then, Amanda has conducted extensive research to try and understand his life and how he views it.

Amanda, a Beebe native and the 28-year-old single mother of Kolten and his 10-year-old older sister Dezma, has no background in fundraising, non-profit organizations or event planning. But that doesn’t deter her at all. “I’ve never done this in my life.”  

After the Facebook post, things moved rapidly. With guidance from the Arkansas Attorney General’s office, Amanda completed the application process for Advocates for Autism of Arkansas to be a certified nonprofit organization. It took about eight weeks.    

A board of directors was created to oversee the work of Advocates for Autism. The organization has a Facebook page (facebook.com/advocatesforautismbeebe), a website under construction and a motto, “To Speak for Autism Until All the Pieces Fit.” Board members include vice president Kim Anderson, assistant secretary/junior board member Anthony Conklin, treasurer Jody Boerner, Danielle Nixon, Jennifer Serio and Gillian Serio, all of Beebe, and secretary Stephanie Butler (Kolten’s stepmother) of Rose Bud.

Initial fundraising efforts have included making ribbons (with material that looks like puzzle pieces) and personalized picture frames adorned with multi-colored puzzle pieces (painted by daughter Dezma). The puzzle analogy is significant to those with autism, and their families, because it takes fitting pieces together piece by piece to learn what works for each individual.

Board members have helped in planning and implementing the Advocates for Autism of Arkansas’ First Annual Autism Awareness Event on Saturday, April 1, at Bro Erwin Stadium in Beebe. The day begins at 8 a.m. (sign-in starts at 7 a.m.) with a 5K “Taking Steps Today for Acceptance Tomorrow.” The event also includes an Honorary Walk, a “Man Pageant” where men from the community will “doll up” and put on a show, all to raise awareness, acceptance and support. The theme for the pageant is “Why Fit in When You Were Born to Stand Out.”  There will be awards, door prizes throughout the day and a special balloon release. Members of the motorcycle group Old Skool Riders will also be on hand to help construct the stage, and do whatever else Amanda needs to have a successful event. 

Sponsors to date who are partnering with Advocates for Autism in Arkansas for the event include RnR Custom Wheels (Jason and Ashley Lindsey), Beebe Athletic Center (Nathan and Brandi Lindsey), Beebe High School ROTC, Beebe Public Schools, Beebe HOSA, Kids Unlimited (Searcy), Pioneer Village, Beebe VFW, Plantation Realty and Valentus Lifestyle Beverages.

According to Amanda, the event has already exceeded expectations. The goal was to raise enough money for two $500 scholarships; to date, there will now be four $1,000 scholarships,  and the money continues to come in.  

Although she admits to being “overwhelmed” at times, she said, “I’m proud. I’m nervous about it going well.”  

For more information on the 5K, sponsor and volunteer opportunities as well as booth registration, contact Amanda at [email protected].

While the money is important, another goal for Amanda is to help create enough awareness about autism that schoolmates will be more understanding and bullying will cease.    

Amanda admits she has not done this on her own. The support from the City of Beebe, specifically, the Beebe Public Schools, and also from around White County has been encouraging.   

Carmela Mancuso, Kolten’s teacher in his self-contained first-grade classroom and “the most amazing person,” along with Miss Jennifer and Miss Mandy, have been instrumental in helping Kolten during the school day, and big sister Dezma is Kolten’s “voice” when he doesn’t have one. When even Amanda doesn’t understand what he is trying to say, she turns to Dezma who explains what he is saying.

And, Big Sister won’t tolerate anyone being cruel to her brother. She will get physical (often to her detriment) if she sees anyone taunting or harassing Kolten. She also took care of him when he went into a seizure on the school bus. She knew to place Kolten on his side and gave the bus driver the right information on Kolten’s medical history. Dezma is always on the watch. Amanda also has on-going support from her fiancé, Richard Jonker, of Fort Smith.

The Awareness Event may soon spread outside the 501 area. Amanda has heard from individuals in Jonesboro, Trumann (Poinsett County) and Memphis, among other cities, who have heard about the event and want her help in establishing similar events in their communities.

For Amanda, it’s all about raising awareness that will lead to greater acceptance and understanding of individuals with autism so children can be diagnosed and treated at an early age, “Until All the Pieces Fit!”