Still Becoming: Caregiving, Courage, and Choosing to Move Forward
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By Tracy Peterson | January, 7, 2026
While being the primary caregiver to a person with special needs has its own unique daily challenges, one of the most significant challenges I have been working through is exactly what and how I share all that we experience. And when I want to share something incredibly meaningful, I am often without an image that captures the moment simply because my family, especially Timothy, does not care to have pictures or video taken.
Without always having images to share, I sometimes feel like I'm not being "real" enough to our EOWD audience.I know, silly, right?
Then there is the issue of vulnerability and general safety. What is okay to share? How do I protect us as a family in this beautiful, yet let's be honest, crazy world in which we live? These and dozens of similar questions and challenges plague me each day, with many of them previously leaving me in a state of paralysis, unable to move forward, unable to visualize what our (my) EOWD future could even look like, let alone figure out the steps to take on this very personal journey.
Indecision can be one of the biggest success blockers for any individual, especially when their life is entirely wrapped up in the needs of another. And indecision, coupled with an exceptionally full family schedule, left me feeling stuck for far too long, to the point where I was starting to feel like I was losing myself in the midst of our daily life.
Then, 2025 proved to be an incredibly challenging year. I knew it was not just our family. Everyone I knew was experiencing something that had a less-than-positive impact on them. I saw it, discussed it privately with many, and personally felt the weight of it in every area of my life. Some of the experiences were good, some were great, and others were absolutely devastating and heart-wrenching. Most especially the still too fresh passing of my mother after several years of watching her fade from dementia.
Yet, oddly, there was a little (and I mean little) bit of familiarity and relief. As I reflected and evaluated, it felt like my non-verbal ASD son had been preparing me for these last few years. While I have not yet researched if there are any connections between autism and dementia, I will say, from my very personal experience, the similarities and behaviors were amazingly similar. We found ourselves using many of the same techniques for communication, meltdowns, and everything in between.
In early 2025, my son, Timothy, began a new program through the state of Tennessee (MAPs), which opened up new possibilities for his independence. At the end of the year, he was also denied the program that had given us the greatest hope for him obtaining employment, due to his limited communication ability and lack of some vital independence skill sets, despite the significant progress he had made in the last few years.
Finding resources and applying to long waiting lists to receive programs continues to be an area that we will navigate well into this year and likely for the rest of our lives. The irony never ceases to amaze me. Today, there is an abundance of resources available for autistic individuals under the age of 21 that did not exist when my son was in that age range. Our family will likely remain among the trailblazers in having a special needs adult who still requires resources, but cannot find them because programs available today typically cap out at age 21, with the limited few that exist requiring him to be put on a waitlist through existing programs for those under 21. Our most recent example is trying to find a speech-language pathologist, only to find therapists who specialize in pediatric needs or providers that are not currently accepting Medicaid for "new patients," and being told to "try back in a few months."
We often spend a lot of time going in circles. We need a specific program or service to move forward, but either we are on a waitlist or the wrong age (too young or too old) to receive the very services needed. Of course, it was when I stopped searching that the newest resources became available, and through a push came to shove situation, we found MAPs, and he was accepted into the program. And it has been nothing short of wonderful. More on that soon.
With all that was happening in our lives, I also found myself frozen in self-searching mode trying to redetermine who I was and who I was becoming, far beyond my natural self-awareness ability, while navigating the emotional overload of family illness of too many loved ones and still being the special needs caregiver, wondering if and how I could ever build EOWD beyond just an idea. Just when I was ready to put EOWD on hold completely, new partnerships emerged, and opportunities presented themselves.
While I will still pay close attention to what I am willing to share in depth, I made the decision that 2026 would be the year to start "living and sharing." This year will be AMAZINGLY WONDERFUL because life is too short to allow it to pass by any other way, even in our autism-caregiving bubble.
All this said, I look forward to tapping into the personal aspects of being a special needs mom and telling our story, specifically, how we navigate our day and our world, the battles we are willing to fight for and when to compromise; what works for us and what doesn't; and everything in between. And, I especially look forward to sharing more about myself, my journey, my dreams, aspirations, goals, and accomplishments.
Thank you for being part of our journey and exploring our world differently with us as readers!
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Tracy Peterson is the Founder & Creative Director of Exploring Our World Differently, a growing platform created from lived experience as the parent and caregiver of an adult nonverbal person on the autism spectrum. Through personal stories, resources, inclusive products, affiliate recommendations, and future coaching support, Tracy is building a space for autism families, caregivers, and people with different abilities to feel seen, supported, and less alone. Explore more from Tracy Peterson...
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