When our son Charlie was diagnosed with autism at the age of 4—almost five years ago now—we were so lost. We had no idea what we were doing, where to go for more info, where to find help, or who to talk to to find out what we should expect. We had no one to guide us on this unexpected journey. It felt like walking into a new world completely blind. We didn’t know where anything was, tripped a lot, and got lost.
But we kept walking. We kept fighting. We kept searching. No one in our life knew what we were going through. We tried many different options for therapies from professionals. Some were helpful, some were a complete joke. The problem was, the majority of the professionals we met didn’t understand either. They knew what they were taught from textbooks. Not real life. There’s a huge difference—living it vs. reading about it. And while some have been helpful in some ways—they are not our people.
Before his diagnosis, at age 2, we were connected with our local Birth-to-3 team who worked with both Christian and Charlie on areas they were still behind from being born three months premature. While they did some amazing work with the boys we told them of some of the concerns we were seeing with Charlie. They saw it too, but they weren’t quite sure what to tell us. In fact, at one point they told us not to worry because it definitely wasn’t autism because he made such good eye contact. What did we know at that point? Nothing.
Eventually, Charlie aged out of their program and we were forced to look for more help. We started exploring several different therapies: PT and OT were the first two therapies that proved to be helpful for us and gave us so much knowledge. But then our insurance stopped covering their services. We were crushed. They were our people. After being on lengthy waitlists for other therapies we were introduced to Charlie’s main autism/family therapist. To make a long story short, 4 years later and we are still working with her today. She’s nothing short of amazing. She is our people.
About a year after diagnosis we found a local support group for parents. Tyler and I checked it out and thought it could work until it didn’t. It seemed like the people in the group had already formed relationships and didn’t need any new-comers. Unfortunately, we didn’t feel very welcomed. To be honest, it stung a little. I mean, aren’t us parents supposed to stick together? Those were not our people.
When the boys were really little we started searching for a new church to call home. Someone suggested a certain church in our neighboring town. We went a few times to get a feel for it. It was different than what we were used to but we kept going, we really liked it. And they had an amazing kids ministry. We knew no one when we started going there but we were welcomed with open arms and fully embraced. We even had a couple of teachers who took the time to get to know the boys and what would help Charlie separate from us and be successful with his peers. This blew us away. Without these people, we might not have stayed. We are so glad we did. These are our people.
A few years ago a local group called Ironwood Springs Christian Ranch wanted to do a test run for a summer autism camp where families could come together, shed the discrimination, stigma, and stares, and just have fun as a family. We were lucky enough to get in and what we found when we got there was incredible. We found we were welcomed from the moment we walked in and with no judgements. We were surrounded by other autism families who understood our journey. We didn’t need to explain our journey or apologize for behaviors. They just knew this different life. We have gone back to that summer camp every years since then. We’ve met some great friends at that camp. These are our people.
Then one night my husband was scrolling through Facebook and stumbled across a video from Kate Swenson. She has a Facebook page called Finding Cooper’s Voice. My husband watched the video and immediately told me I needed to watch it. I did and with tears in my eyes I told my husband, “She gets it.” She lives autism daily as we do. I spent the next couple of hours on her page reading posts and watching videos. I knew right away I needed to get to know her. That was several years ago now. Along the way, I’ve not only found Kate but a whole tribe of supportive and understanding men and women who also understand life with autism. These are our people. This is our tribe.
When we started this blog we only intended to use it to educate people on why we were fundraising for Charlie’s service dog. But it’s become so much more than that. Even after fundraising, we kept the blog going. It’s helpful for Tyler and me to express our wide range of emotions and experiences, but we also want to bring hope and light to other families who might be at the beginning of their journey. We don’t want people to feel lost as we did. If you haven’t found your people yet, I encourage you to keep searching. Because when you finally find them, it will be a beautiful thing.