Behavior Behind the Scenes

This photo was captured in our home - April 2026

What is not always shared is what is constantly being managed behind the scenes. Nearly every day, Linda has meltdowns that can range from mild to severe, lasting anywhere from ten minutes to an hour or more. These are a constant part of our daily life that occur randomly at any time, anywhere, and without warning.

In Linda’s case, because she is unable to clearly express what she is feeling, she repeats random combinations of two words over and over as her way of trying to communicate distress. Over the years, I have come to recognize this pattern. These repetitive words always happen when she is in pain. While her inability to accurately communicate may play a role in her frustration, the consistency of this pattern has made it clear that something deeper is going on. Giving her pain relief always helps. That response alone has taught me that her disturbing behaviors are a signal. The self-injury (SIB), the biting of her hand, the hitting of her head, the loud mumbling, and the aggression toward others, all of these behaviors are tied to pain. They are not simply “bad behavior.” They are her way of telling me that something is wrong.

Worth noting is how this reflects where things stand now after years of therapy. When Linda was younger, many of her behaviors were reactive and challenging, which needed change through applied behavioral techniques. But, looking back, I now see that some were also signs of pain I did not yet recognize.

Progress exists, but so does the constant work behind it, and understanding this changes everything, how I respond, how I support, and how I see behaviors that are so often misunderstood. While creating videos and writing may be easy for me, it is actually part of my self-care, a creative outlet that allows me to process and express what I am living through. At the same time, I am in constant first responder mode with my daughter, living a boots-on-the-ground reality that requires me to be ready at all times. The truth is much of this journey is about staying afloat, and being in a survival mode that never fully turns off.