The journey began five years ago, while I, co-founder of Perfect Fit Therapy Clinic was sitting on the floor of our playroom with my two-year-old son, Dax, and a teacher from the early childhood developmental intervention. That is when I heard the dreaded words no mother ever wants to hear. “I think we need to start doing evaluations for Autism.”
At that moment so many things entered my mind.
“This lady is crazy.” “My son doesn’t have Autism.” “I'm not even sure I know what Autism really means.” “Is this going to affect him for the rest of his life?” “Is this going to affect all of us for the rest of his life?” “What do I do now?” “I don’t want to deal with this.” “I don’t know how to help him. God, how do I help my child?”
In the coming years, before our official diagnosis, my family felt like we were being put through the ringer. It was two years of meltdowns, two years of very little communication, two years of not taking my kids to football games because Dax could not take the noise, which is hard considering my husband is a football coach. Two years of people staring at us in Wal-Mart because I might have to leave my cart behind if anxiety sets in. Two years of people that don’t understand telling me to spank my kid.
There were many evaluations which brought many tears, a lot of denial, and more frustrations than I ever thought I would endure.
I found a bright spot in two other moms; my friends Holly and Tatiana. Quickly we formed a bond over Autism.
We were just three moms. Three moms, with three little boys that would forever face struggle. They told us his brain doesn’t work like yours does. It never will. He might never speak. He might forever wear diapers. He will always have social anxiety. He won’t understand emotion. His life will be hard. Three moms hearing the same words.
What they didn’t tell us was that he would be brilliant. He would be smart. He would be energetic. He would be funny. He would have passion and he will show love harder and stronger than most typical people ever know how to do.
We three moms have learned those truths.
We decided to take a stand for our boys. If we weren’t willing to advocate for them, who would? We decided to organize a 5K race called Run for Autism in April of 2017, to correlate with National Autism Awareness month. Our goal of the run/walk was to let people hear the word Autism. So often when we said, ‘My son lives with Autism,’ we would hear, ‘What does that mean?’ We wanted citizens of our community in Dodge City to begin to understand Autism so acceptance and understanding for the neurological disability would happen. We also wanted to raise money for organizations in town that advocate for and work with individuals with not just Autism, but any special need.
Run for Autism has existed for three years and in those three years we have added several additional events to our offering including:
- Sensory Santa during Christmas
- Special Needs Night at Long Branch Lagoon
- Recognition for the DC Dodgers Special Olympics Team
- Granting communication devices to individuals who can’t afford services.
- Donating $4000 to Arrowhead West for equipment in early toddler intervention screenings.
- Researching and developing a plan for an inclusion and sensory friendly park and splash pad facility in Dodge City.
With those endeavors in mind we decided to legalize our Run for Autism group and take steps to make it a recognized foundation called Perfect Fit Foundation.
Dax entered first grade this past school year. With Autism there are so many factors as to what can make it a good year or a tough year. One thing people don't know about Autism is that poor behavior is often associated with it. Children with Autism have a difficult time controlling their emotions. They feel so strongly and don’t understand the social norms or have the capacity to control what is happening in their mind and body. For all of us, that control is a learned behavior. For children on the spectrum it takes much longer to learn it and it’s much more difficult to teach.
Dax began struggling with his behaviors. Hitting and throwing things at other students and teachers at school became a daily occurrence. Screaming and acting like an animal or a dinosaur when he didn’t want to do something he was asked to do happened at school regularly. My husband and I were getting negative feedback reports almost daily. We had many meetings with teachers offering our suggestions, while they offered ideas to us and nothing seemed to change.
While Dodge City has many things to offer its community members, it lacks in offering services for special needs individuals. What Dax really needed was Applied Behavioral Analysis (ABA Therapy) from a licensed and trained therapist that knew exactly how to manipulate his behaviors and help him and us as parents learn to control his emotional. The nearest BCBA to apply that therapy is in Wichita, 150 miles from Dodge City. I called clinics in Wichita to ask about enrollment. How would it work? Would we qualify? Could we make a weekly visit if we had to? Every clinic I called told me they wouldn’t accept Dax for therapy without a minimum of 10 hours a week. That 150 miles started to put a damper on my son getting therapy.
Born and raised in Dodge City, my husband had no real interest in moving. We prayed for answers. We prayed for help. Then, nearing the holidays and planning a visit to Atlanta, Georgia to visit my brother and his family, I talked my husband into the possibility of moving from Dodge City. Atlanta is a thriving metropolis with many therapy clinics and specialized schools for Autism. Dax could go to an all-day school and get the therapy and education he deserved from professionals trained in how to deal with his brain. However, people like what they like. Shortly upon our visit it became evident to us that we did not want to live in Atlanta. We really didn't want to live anywhere except Dodge City.
In the midst of our flight home after Christmas I said to my husband, “I'm opening a therapy clinic in Dodge. I don't know how, but I’m doing it.” His response was, “okay!”
Through research, through conversations, through countless hours of internet surfing and phone calls I was pointed in the direction of a clinic in Manhattan, Kansas, organized in a similar way to what I hoped we could bring to Dodge City. I was able to get in touch with the clinic’s director, Christiana Schadegg, which became the true starting point of creating my dream, as I quickly found out her passion for opening therapy clinics across the state of Kansas. After just one conversation it was decided that we would be doing the citizens of Dodge City a disservice to not open a clinic and I had a co-founder to help my dream become a reality. I know, as a mother, I would be doing my son a disservice if I didn’t get him the therapy and help he so desperately needed and deserved.
The idea of the Perfect Fit Foundation now has a new purpose and goal. The creation of the Perfect Fit Foundation will be to serve the special needs community of Southwest Kansas in providing multidisciplinary therapy services in the form of physical therapy, occupational therapy, speech therapy and applied behavioral therapy, in addition to creating a learning center to aid the community in serving children educationally as well. The foundation will fund the not-for-profit clinic and learning center in providing those services. Our goal is to serve all of Southwest Kansas, not simply Dodge City. Being that all fore-mentioned services are lacking in not just the larger cities in Southwest Kansas, but most definitely the smaller towns and communities, Perfect Fit Foundation will strive to reach all individuals that need and deserve services from Perfect Fit Therapy