Speaking Up

The following post was originally published on the Childhood Bipolar Project site on June 28, 2014.

As you read, think about this… how often do we ignore that voice inside us that says something is not right, this doesn’t feel right to me or this doesn’t honor my needs? And why do we ignore? Food for thought, enjoy the post! 

As a parent, one of the most difficult things we can experience is watching our child struggle with an illness. In my case, I watched, somewhat helplessly, as my son plummeted into a mental health crisis. A few months before, I had noticed some changes in his behavior, withdrawal from school and friends but naïvely chalked it up to “normal” teenage doom and gloom.  Until the night, just before Christmas 2010, when we ended up in the Psychiatric Emergency Department of our local hospital. It was then that I realized it was much more serious than I had imagined.

That night, as we moved through a series of “interviews” with social workers, nurses and finally the on-staff psychologist, what became immediately apparent was that while the treatment team was trying hard to assess the situation, they were not always listening to the information and background I was sharing about my son. It felt as though they had already diagnosed the problem, from the intake survey, and were just going through the motions with us as they cycled in and out of the patient conference room where we sat. Unfortunately, it was not the last time I experienced an indifference towards parental input.

As we moved through different treatment teams, hospitalizations and facilities one thing that became apparent to me was that in order to ensure the best course of treatment for my son, it was imperative that I understood my role in the process. More importantly, I needed to remember that I had a level of expertise, experience and knowledge of my child that no one else had. It was then that I realized that while the doctors had hard earned credentials, which could be interpreted as being in a position of higher authority, I had a M.O.M. after my name. Those credentials, in my opinion, were an equal level of expertise when it came to my son’s needs.

Don’t get me wrong; I truly worked to partner with each member of my son’s treatment teams at every hospital, outpatient and in-patient facility that treated him. However, when something didn’t feel “right” or best for my son whether it was an assessment of his behavior, a medication change, or discharge recommendation, I spoke up and actively participated in the decision making process until it resonated as the best course of action with everyone involved.

Perhaps speaking up is not a challenge in your situation, but I was brought up with a belief that certain professions, whether it was a doctor, social worker, educator or clergy, were not to be questioned. Somewhere along the line, this translated for me into a belief that when someone was an expect in their field, they were “always right”.  As I traveled down this road with my son, I realized that experts are imperfect and can make errors in judgment just like the rest of us. This coupled with the challenges and difficulties that exist trying to navigate the mental health support maze, a perfect storm for imperfect recommendations and treatment decisions, could easily develop if I didn’t speak up.

For me, I knew that as hard as it was to find the courage to input and participate when my belief system would have had me remain silent and go along with every decision and recommendation provided without question, my son’s life and his future depended on developing a partnership with his treatment team and recognizing that my input was just as important and valid.

Too many times as parents or as patients, we give away our power because we are uncomfortable speaking our truth. Many times we know when a decision or recommendation just doesn’t feel right and yet too often we are willing to remain silent and not listen to that voice inside that says “maybe there is another way, a better way for this to be handled”.

If you find yourself in this place, take a moment, gather your thoughts and speak up. From my personal experience, not all doctors or treatment teams will be excited about the contribution, but it’s not about that, it’s about ensuring that no matter what  your child or loved one gets the care that fits their needs.

Remember your credentials as a parent or caregiver and speak your truth, even if your voice shakes.