Non-profit to aid children and families with autism
By Carol Schreiber
Staff Writer
“One in 68 households are brought into the world of autism every day,” explained Chad Cummings. Along with his wife, Jami, the Cummings have created a non-profit for children and families with autism. “Keagan’s Cause” will help to raise awareness, and help families who may need assistance with therapies or equipment while dealing with autism. “We’re one of these families, living with this on a daily basis,” Chad added.
Chad and Jami’s son, Keagan, was diagnosed with non-verbal autism, and the family has always worked hard to help raise awareness about autism. Creating the non-profit organization Keagan’s Cause allows them to continue to raise awareness while helping families that are dealing with autism.
“They are frustrated sometimes, and may pound their heads,” Chad explained of autistic children. “These are not naughty kids,” Jami added. “They can’t communicate and it’s very frustrating,” Chad said. “They get overwhelmed with stimulation, but there’s a sweetheart locked inside.”
“We will fund things like service/therapy dogs, tablets or iPads for sensory skills, helping schools in the area with occupational and speech therapy, expensive speaking apps for non-verbals, and more,” explained Chad. The goal is to help families who may need it, who are located within a 60 mile radius of Worthington.
Keagan’s Cause has been formed as a 501c3 non-profit organization that will be kicking off their work with Keagan’s Cause Concert to Benefit Autism Awareness on Saturday, January 20. Doors will open at 6:00 p.m. at Memorial Auditorium in Worthington for a silent auction, Keagan’s Cause apparel, a cash bar and a concert featuring Tim Montana and Chris Hawkey. Donations to Keagan’s Cause are tax-deductible.
Chris Hawkey helped to initiate the creation of Keagan’s Cause. “He saw through my company, my involvement in many things. He asked ‘when are you going to do something that is really dear to you? You have the tools to let people know’.” Hawkey had seen the blue lights which the Cummings family used to help spread autism awareness during the month of April, and wanted them to do more to help.
“Hawkey told me he’d put on a concert,” Chad added. At the RadioWorks Beach Bash last July 3, the arrangements began to create a benefit concert. Tim Montana, songwriter and performer, also volunteered to help with a benefit. In September, the Cummings met Montana at the Garth Brooks show in Sioux Falls. Dates were set for the benefit concert to raise money to raise awareness for autism. “There’s a fee for a ticket, and those proceeds will go towards making somebody’s day, or week or life a lot better,” Chad added.
Work was underway to create the non-profit organization, and board members were sought. Members of the Board of directors for Keagan’s Cause include Chad and Jami Cummings, Dan Huls, Michael Weg, Travis Burnham, Addie King, Shannon Schmitz and Yoli Salas. Family friends, co-workers, and Keagan’s former case worker are among the directors, all of whom “have a big heart,” according to Jami. “We’re surrounded by some great people.”
Keagan’s Cause plans to help by donating funds through an application process likely twice a year. “We’ll have it on the website, asking them to explain their situation, what funds are needed and what they will do with it,” Jami said.
With pre-sales of Keagan’s Cause apparel and blue light support from neighboring towns, the organization has decided to donate throughout the area. “We have a lot of support from a lot of different towns, that’s why we’re going about 60 miles outside of Worthington,” Jami added.
“Once you’ve met one person with autism, you’ve met one person with autism, they’re all different,” Chad stressed. Each child is different, which is why it is called autism spectrum disorder.
According to the autism society website, “autism spectrum disorder (ASD) is a complex developmental disability; signs typically appear during early childhood and affect a person’s ability to communicate, and interact with others. ASD is defined by a certain set of behaviors and is a ‘spectrum condition’ that affects individuals differently and to varying degrees.”
The Cummings family is just one of many that have heard this diagnosis for their children. Formerly of Brewster, now living in Worthington, the family learned of the autism diagnosis when their son Keagan was a little over a year old. Jami indicated that she felt something was not right, and asked his doctor. On a later visit, she video taped Keagan as he ran circles around the exam table in the doctor’s office. After showing it to the doctor and explaining other repetitive motions and behaviors, Jami soon learned of Keagan’s diagnosis of non-verbal autism at about 18 months.
“It is what it is, there’s nothing we can do to cure it, so we embrace it,” Jami said. “Some days are difficult and some days aren’t.” His sisters, Kennedy, 20, now living in Fulda, and Madison, 15, are great with Keagan. Chad and Jami expressed how wonderful they are with their little brother.
“If it’s a question, he answers, but there’s no conversation,” Jami said of Keagan’s abilities. He recites words, like the ending of a public television program, “brought to you by these foundations and viewers like you,” but does not carry on a conversation. “I grew up in a very active sports house. My son very likely might not ever play sports, but I wouldn’t trade it for the world.” added Chad. “We’re probably closer as a family than most other families because of all this.”
The Cummings contacted District 518 to create a special educational plan while they were going through the specialist and official tests in Sioux Falls. “If there’s something out there to help my son, I want to do it,” Jami said.
She presented the plan to the specialist who approved it, and they began sending Keagan to school by the time he was two years old. “He’s got a diaper bag, his nookie and a juice cup, and you put him on a bus,” Jami said of sending him off to school at that age. Keagan began his schooling and got very close to the bus driver, Deb.
The Cummings don’t have the bargaining tool that is commonly used by parents, but they manage. “He’s healthy, and many families have it much worse,” Jami said. “Little things mean so much – like when you hear a mom say ‘stop talking’ or ‘be quiet’, I think if only I could.”
Keagan learned a few words, but seemed to lose them again right away. “He had never said ‘I love you’ in the first four and a half years of his life,” Chad said, “and we didn’t even get it first.” Jami shared the story of how Keagan first said the words to Dr. Barden during a visit.
“We just can’t say enough good things about the people that work with him.” He attended school three or four days a week, including summer school, until entering kindergarten. Keagan began all day, every day kindergarten, and went forward without any struggles. He’s now in first grade, spending the majority of his time in the special education classroom, working on letters and writing skills right now. “He likes to cuddle and sit by people,” Jami shared. “There’s so many good things about him and it’s all worth it.”
The Cummings have shared awareness throughout the year with their personal Facebook posts, and stress awareness in April, handing out blue lights. “Keagan is not just non-verbal in April, it’s everyday,” Jami pointed out, as awareness continues throughout the year. “Just ask us, we’ll be more than happy to share. If we can share our story so other parents don’t have to deal with the stares or comments in the grocery store. We’re very open about Keagan, and we don’t do it for sympathy, we do it because we want to make people aware, that it’s real life.”
The non-profit Keagan’s Cause was created with the help of Bill Wetering, a lawyer with Hedeen, Hughes and Wetering. Logos were designed by Brad Behrends of Behrends Signworks in Worthington. T-shirts and hoodies are available with the logo. Pre-sale orders have been placed, and apparel will also be available at the Kickoff Concert on January 20. The Cummings gratefully appreciate all the assistance they have already received as the non-profit launches.
Among the silent auction items are an i-Pad, blue lights, Keagan’s Cause apparel, halves of beef and pork, a year youth YMCA membership and more.
Follow Keagan’s Cause on Facebook to learn more. Marjorie Peterson of Brewster is creating the website for Keagan’s Cause, which will include the application form. Advance tickets for the concert are currently available at friendsoftheauditorium.com, or by calling the box office at 507-376-9101.
Plans are also underway for a Family Walk for Autism, scheduled for Saturday, April 28, to wrap up Autism Awareness Month in April. The Cummings, along with Keagan, will help light the area blue to help raise awareness. Watch for more information in the spring.
Keagan’s Cause mission statement is: “To raise awareness for Autism in SW Minnesota and NW Iowa and raise money to provide grants to those living with Autism for therapy or continued growth.”
