Forgetting Milestones and Learning to Measure Progress… a New Way of Thinking! #Reflection

By Mary Ellen Bogucki

The start of 2019 had me reflecting on my daughter, Bree’s journey living with Autism. When I started writing these blogs a few years ago, my goal was to share our story in hopes that some of our experiences could inspire and help others. That is still my goal, that with each new experience Bree has, someone else can grow too. I am far from an expert, but I know how much it has helped us to hear from families who have walked before us.

In early January, my daughter Bree headed to O’Hare Airport in Chicago for a flight back to Tennessee, where she is attending Tennessee Wesleyan University. A few weeks earlier, for the first time, she flew home independently for winter break. Bree will tell you there is a huge difference in flying out of McGhee Tyson Airport in Knoxville and flying out of O’Hare Airport in Chicago. The crowds are different, the pace is different and I was so nervous for her doing it alone. She was getting so angry with me and was constantly reminding me she could handle it on her own. Then, she showed me, she handled it like a pro! I witnessed that she now has her own voice and she can advocate for herself.

It wasn’t always this way and as I reflected back on the past year, I thought of how far we had come. To see our growth, you have to see all the struggles and challenges, only then can you appreciate our successes. Our journey has come so far already, but the beauty lies in what is yet to come. Things I never dreamed possible keep happening and now my answer is “let’s see” and not “we can’t!”  We have traveled from not being able to take Bree anywhere without her melting down, to Bree living and traveling independently. Yes, something I thought was a “can’t!” As I often say, “Autism is ten steps forward and five steps back!” I don’t have all the answers, for each person on the Autism spectrum is different. My advice would be never stop walking, no matter how tired you are or frustrated you become, find the strength to reach out to find that person who can help you keep moving forward, whether it’s a friend, relative, doctor, teacher, therapist or even a stranger who has similar experiences.  I am so grateful that we have never walked alone and the people I have met along the way, have taught me so much about not only my daughter, but myself.

So, what have I learned…I’ve learned that I need to know when to push her and when to pull back. For Bree’s first three years of life I had no idea what was going on with her. Why she was developmentally delayed, why she was so upset all the time. When I did find out she had sensory issues and Autism, I became overprotective and wanted to take away all the things that caused her distress. What I learned was I wasn’t protecting her, but only making life harder for her. What kind of life would she have if I never exposed her to those things she found difficult. That was a hard lesson for me to learn, I thought I was being a good mother, but if I continued, my daughter would never be able to grow and live independently. Independence became our goal for Bree and we were being told by the experts it was achievable. Not everyone is lucky enough to hear those words, so I needed to respect that she possibly could. I needed to help her grow and not stunt her growth.

To this day, Bree and I argue over one thing…CONTROL. Bree has felt her whole life is out of her control. In the beginning it was the sensory overload, the academic challenges and the inability to understand social cues and communicate effectively. She is an adult now and wants control over her own life. She wants to make decisions for herself. For years, that control belonged to me, I was the person working and advocating for her educational support. I was the person explaining her behaviors and helping her make good choices. It is not that I want to retain the control, I really don’t! My hardest hurdle is knowing if she is ready. When we get into these control “tug of wars” Bree tells me “Let me try, maybe I can’t do it alone, but we won’t know unless I try!” She is absolutely correct, we won’t know until she tries. So, my new role is to offer suggestions and let her know I’m always here in case she needs some added support, but I don’t have to drive the bus anymore. I can be a passenger, while she takes the wheel.

It’s not easy to know when to push and when to step back, it’s all trial and error. It’s okay to make mistakes and it’s okay to let others take control. Afterall, life is a work in progress and Autism is another road. Hopefully, you will ask for help and find the right directions to keep you traveling in the right direction. Hopefully your loved one will grow and experience those things you thought they couldn’t. Don’t compare your journey to my journey, just keep moving forward, if you have to go back a few steps, know that’s okay. You just have to keep trying and moving forward. Your journey may be different, but I hope you know you are not alone. 

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Picture: Courtesy of Emily Bogucki

Mary Ellen Bogucki is the mother of Breanna (Bree.) Bree is a twenty-year-old college student, runner, singer, special needs advocate, Special Olympics athlete and Global Messenger.  Bree has been diagnosed with high-functioning Autism, OCD, anxiety, situational depression and sensory processing disorder. Follow along as her mother describes where Bree began and how she arrived where she is today.  Mary Ellen will explain what helped Bree improve, along with some mistakes they made on their journey. By telling their story, they hope others will find hope and comfort.  Bree is now 21 and attending Tennessee Wesleyan University in Athens, Tennessee. She is pursuing a Bachelors Degree in Social Work and hopes to advocate for and help others who face challenges in life.