Kim Steele remembers when she received the official diagnoses for her two youngest children, Kenzie and Travis.
They were on the autism spectrum.
It was the late 2000s and the Steele family was basically feeling around in the dark to provide the services that their children needed. They needed help with speech therapy, occupational therapy, and physical therapy, but there weren’t many providers in the area and many were backed up with a waiting list.
They needed childcare that could accompany Kenzie and Travis’s needs, but there was none.
And, once Kim became a stay-at-home mom for them, the family needed support from other families like themselves. But even that was limited.
“When our journey started, it was really hard to find what we needed,” Kim remembers. “We just did what we could.”
“It really changed every aspect of our lives as a family because we did not have access to what we needed for our kids.”
A few years later, Kim joined with several other “autism moms” that she’d met and connected with in the early stages of therapy and services for her children. They had a simple goal.
“We don’t want anyone to go through autism alone,” she says. “It can be very isolating for a family. Let’s make sure that no one goes through this alone.”
Their non-profit, Families on the Spectrum, was born and they began combating that isolation quickly with fun, autism-safe outings for families to attend. They looked and felt very much like the outings that other families did with their communities of families and friends — trips to Chuck E. Cheese for pizza and games, and jump days at Vertical Jump Park. But, they were private events where only families on the spectrum could attend and feel safe making the accommodations that their children needed to enjoy the most of their play.
Very quickly, Families on the Spectrum branched their services so that they could help others access the therapies, services, and resources that children and families on the spectrum need.
“If a mom has a child that is newly diagnosed, she can pick up the phone and get ahold of an organization here at home and we can walk through how to get Medicaid, how to approach therapies with health insurance, and where to find therapists,” she says. “We can basically help them go through the process so they don’t have to wing it like we all had to back in the day.”
As a founding board member and now director of community outreach, Kim is now helping to achieve another of the group’s missions — making our entire region inclusive of children, young adults, and even adults at all ends of the spectrum.
“Sometimes what happens is when people get that autism diagnosis they move to Nashville or St. Louis to access services and get a more inclusive environment,” she says. “We just wanted to create that here so people didn’t have to move away to get everything that they needed.”
Achieving that goal is sometimes small — like installing communications boards at all local parks so non-verbal children can feel comfortable during outdoor play. And sometimes those efforts are large — like partnering with another non-profit to provide training for first responders on how to provide support to autistic people during crisis situations and working with businesses on how to best hire and work with individuals with autism.
The Final Piece
The efforts that Kim and Families on the Spectrum have undertaken in their first near-decade have made great strides in achieving their goals — resources, support, and services for families on the spectrum.
But, with a recent huge announcement, Kim says she is literally seeing dreams come true before her eyes.
It is something that has also taken a long time to come to fruition. In fact, when Kim joined the executive board of Easterseals West Kentucky back in 2016, they were talking about it even then. When Senator Danny Carroll came to Sarah Smith and asked her to be a part of it, she thought it was a “pipe dream.”
But the dream has finally come true with the announcement of the Easterseals West Kentucky Autism Center opening in 2022.
“This is probably my proudest moment,” Kim says. “Easterseals has a lot of wonderful programs and a lot of things we do to serve very specific populations in our community. This center fills a void in our autism community that I think Easterseals is the best organization to fill.”
Sarah, who was brought on as the vice president of autism services in 2022 to spearhead the center’s development, is well aware of the void. She deals with it every single day.
“The need for an autism center in Western Kentucky is huge,” she says. “We have families already calling wanting to make sure their child is on our wait list even though our wait list doesn’t start until August. However, every ABA (applied behavioral analysis) facility in this area, most likely in the state, are unable to provide immediate services and families stay on wait lists for months or years. There just aren’t enough providers to meet the needs.”
“Families seeking services right now are being told that they have to wait and that’s awful, because if your child is engaging in self-injurious behavior, if they are banging their heads, if they are hurting themselves or others, you just can’t wait, you need services now.”
“I can’t wait for the day when we’ll start making calls to parents to let them know that we’re ready and excited to start providing their child with ABA therapy,” she says. “I wish we could open the doors tomorrow but it takes time to ensure that our clients will get the center they deserve. And they will!”
When the center is fully complete, Sarah anticipates that they will be able to serve 25 clients, making a huge dent in the huge need for these services.
Right now, Sarah and the Easterseals staff is busy making sure that every detail of the new center’s renovation is perfect.
Visit the center on North 30th Street in Paducah and you’ll see one side already taken down to its studs to facilitate a new layout. You’ll see Sarah’s post-it note reminders to the construction crew. And, more days than not, you might bump into Sarah herself there, making notes and taking a look. For her, it’s the project of a lifetime.
“The opportunity to build a center from the ground up and help a population that is really underserved was just an excellent opportunity,” she says. “It’s almost too good to be true.”
“It’s just an awesome experience to be able to take a building and completely renovate it and make the layout that’s going to work best for children with autism—everything from the lighting being sensory-friendly to the flooring reducing noise, yet also being able to be cleaned easily; being able to decide each little factor that’s going to make it a friendly environment for kids with autism.”
“It’s just amazing.”
More than the building, however, the new Easterseals Autism Center will increase the region’s availability of ABA services, an integral component of autism therapies. Sarah is planning to offer three different treatment models at the center, from full-time, half-day, and even a social model aimed at improving social skills. Combined with this, clients will still be able to access their regular therapy services (physical, speech, occupational) in the same center, reducing the number of different therapy appointments that families are juggling.
And even on top of all that, Sarah is working to provide transportation to and from the center.
“Right now, it’s really a burden on parents to try to transport their child to all the therapies they need,” she says. “They often need speech, OT, and physical therapy along with ABA, and that’s a lot for a parent to take on, especially if the children are attending school as well.”
While Sarah and the Easterseals board and staff work tirelessly to make the new center a perfect resource for the region, Kim and the Families on the Spectrum leadership are kicking off in-person events, outings and fundraisers again after a two year COVID-19 hiatus.
“This will be one of the first times that our families have been able to gather and we are looking forward to seeing everyone again,” she says of their upcoming scheduled outing.
For Kim, it feels like a time to celebrate. It feels like the center is a final piece of the puzzle that she and others have worked so hard, and for so many years, to solve.
“The fact that we can now do this and serve this population, and those parents will never experience what we experienced back in the day of not having accesses to services,” she says. “I’m so proud of Easterseals for taking this on, all the planning that has gone into it.”
“It’s amazing to see all the minds come together over the years to really identify what the problems were, and identify where we were lacking, and everybody coming together to plan for how we are going to tackle it,” she says.
“Now it’s happening. It’s just going to be a game changer for sure.”
“It’s very emotional, I’ll be honest with you.”
