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Finding The Right Fit

Before I ever had children, I felt pretty confident about how their upbringing would go. I went to public school and was involved in every extracurricular I was able to do. My brother and I were involved in sports, music, dance, drama, public speaking, and if there was something to sign up for, we did it. I decided in my head that this was normal. If you didn’t go to public school, or volunteer for every opportunity, you weren’t “normal”, and that wasn’t going to be my kid.

I imagined Jace playing all of the sports, being handsome and strong, tall like his dad, and top of his class socially. I remember similar feelings with Paislie. I was so excited for a daughter. I could teach her all the things I knew. I felt so prepared to be “that mom” and was so excited about all of the typical opportunities life would have.

When autism hit our family, some of that felt like a death. I grieved what I imagined and had planned. You see, my signature sin is control… and I wanted to control that piece. I wanted to fit in as a parent as much as I wanted my child to fit in, too. This all sounds awful and vain when you put it on paper… and it is. But I think it would be ignorant of me to not discuss that feeling, because I know I am not the only one that has felt it. The loss was real.

It took me a few years of diving deep into doing anything I could do to help my child be closer to a typical version of themselves. We tried so many therapies and treatments. We did special diets, restricted certain things, upped our vitamin regimens, and spent sleepless nights praying God would take it away… “Please just help them fit in.”

I would soon find out that trying to shove a square peg into a round hole wasn’t helping anyone. Loving my children as they were was all that mattered. If we were going to grow as a family, we needed to be on the same page, and I needed to shut out the opinions of others and see and love them for exactly who they were. I started focusing on helping them manage their emotions. I would cheer on the smallest of wins. Instead of being sad that this is all they could do… I was so thrilled they did it! If either of them would so much as touch a food that was foreign to them without a meltdown, I found myself cheering for them like they were in the Olympics! My fears and loneliness turned into cheerleading sessions and thankfulness for progress, and the vision I once had for my children changed… and I was ok with it.

When it was time for Kindergarten, I battled what to do. I wanted Jace to go but felt he would be judged for who he was. We decided on a Chrisitan school that was smaller in class size. Somewhere in my mind I had decided that because it was a faith-based school they would be more understanding and on top of it. What I found instead, was that Jace didn’t have the tools to be successful in any school environment without proper support. He was trampled on the playground, and he was ignored by the teacher. He was lost, not learning, and really just needed to be home. I cried out to a friend that ended up saving the day and helping me in ways I will never be able to express. She offered to take him, homeschool him with her children, and to help him. Jace continued at-home therapy and private speech and OT during this time, and we found that he thrived in a homeschool environment. He could take his time, it was calm, and he felt more in control which decreased his anxiety.

Fast forward to Paislie’s first day of Kindergarten. The pressures of sending our child to “real school” were still there. Therapists acknowledged that it should be a good fit, and encouraged us to give it a try. We did. We spent an entire school year there. School during the day, therapy afterward. She stalled. No progress from the moment she stepped foot into that building. It wasn’t because she didn’t need the structure, but here we were once again with a child that just didn’t have the tools to manage themselves alone, let alone themselves in a setting with unlimited overstimulation. The noise, the people, the constant changing of staff… It was a nightmare for her. We had been working diligently on therapy goals with Paislie for years at this point and had a great routine down that was getting traction. I will never forget sitting down with one of her teachers, and she looked me in the eye and said “Kacie…we will never be able to give Paislie what you give her at home.” That comment made me feel so alone. I wanted help. Why not? Why can’t you help her? Aren’t you educated for this? And then it made me realize…the answer wasn’t in the school. The answer was in my gut.

We brought her home to do therapy with her brother after that and found ourselves moving across state lines in search of better services. Paislie required 1:1 ABA therapy, speech, and OT. She needed a repetitive schedule more than her brother, and this new therapy center has been an incredible fit. Autism is what they do, and it is exactly where she needed to be. We saw growth again…finally.

Jace started attending an Autism specific charter school that worked with kids just like him. He gained some freedoms and choice over his day, and at the same time had staff to help at any given moment.

One was 20 minutes away from us, and one was an hour away. Every day, between drop-offs and pickups, I would spend 5 hours in the car. But if you are a mama, you know you’ll do anything to give your kids whatever they need. I have always felt that my job was to help them become the best versions of themselves, regardless of my convenience. So we drove.

Jace graduated from his school, and we once again were at square one. Nothing fit his needs. So at the moment, he is back home. With me. He isn’t learning calculus but he is learning how to properly use a knife in the kitchen, how to cross the street, how to stack a dishwasher, and soon how to run a business. He does standard schoolwork too. And here he is, thriving.

I have learned that our children are so different. Their struggles are unique, their gifts are unique, their needs are unique… and it is up to us to help them, even if it doesn’t fit the mold you always imagined. You have the freedom to choose, and it can change. It doesn’t need to stay the same. You have my permission to find what is best for YOU and run with it unapologetically.

The life we live now is free from sports and accolades, but it is sweeter than any of that. The joy, tears, and high kicks are bigger when these precious babes learn a new skill than any trophy or picture in the paper they could have gotten for being someone else.


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Hi, I'm Kacie Ko

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