Stay the Course, Fight the Fight, and Advocate

When the stuff hits the fan, when something is so terrible I forget my coping skills, I revert to what I know. Once in this frame of mind, there are only two ways to proceed – paralysis or to fight through it. I was the first type. My go-to cognitive space was in my victimization. My ruminating thoughts quickly confirmed that I am the victim. Why does this happen to me? I don’t deserve this. I am a good person. Yet, once I calmed enough to feel the weight of my dilemma, I challenged myself to become the second type, the fighter. Not understanding was not an excuse to not act. Armed with Google and a library card, I began the research. I adopted the attitude that I don’t know what is wrong, and I needed to learn all I could to find out. Fighting for understanding became my new coping style. Understanding takes the fear away and brings forward motion instead of paralysis.

I am the mom of a special needs son. It was many years into our journey before I comprehended just what that term meant. I thought I knew. I recognized the terminology when used for physical limitations or with learning disabilities. Yet, it never occurred to me that special also applies to emotional needs. So, I continued to make my square peg fit into a round hole. Doing so, I wrestled with many conflicting emotions. Filled with determination, anger, and fear, I searched for ways to improve all of our lives. However, simultaneously I battled the desires to bury my head in the sand, to pretend things were okay, and to simply will my family towards normal.

One of the hardest parts was in managing that gut feeling that kept gnawing at me: something is wrong, my child needs help, and I don’t know how to make this better. I love my son, and when something is off with him, I feel his anguish. I may not be able to define the problem, but I feel it deep within my bones. Sure, I sounded confused when starting in the search for professionals, as I tried to find the words past, “I need help.” But I did it anyway. I refused to allow my verbal clumsiness to be the obstacle that kept my son from getting better.

During our journey, I grew frustrated with professionals, ranging from teachers and school administration to doctors and therapists, all who didn’t understand. As I tried to describe concerns, I saw in their faces that they didn’t get it. Okay, maybe they never said it, but it was in the way they tried to calm me down in telling me that my son was fine and doling out the parenting advice, but not solving any problems. I felt unheard - at home, in his school, and within the medical profession. That alone would have stopped me if it were just about me, but this was about my son. Feeling rather inadequate, but steadfast in my belief that we needed help, I persisted. As his mother, it was up to me to make it happen.

As I reflect on those years, I see that through the agony and suffering, brought with it a defining moment as his mother. Where I started weak, unable to communicate my fears, anxieties, and love for my child, over the many years, we ended in a place of strength and growth. The more I faced stress over navigating the system, the more I grew aware that as his mother, I am his advocate. No one else will fight for this child as I will, for his chance to improve. Consider the word advocate as a verb and not a noun. Advocating for him meant representing him while fighting through the system, no matter how intimidating it was. A system I found to be slow and overly cautious.

Professionals were reluctant to provide an accurate diagnosis or more aggressive treatment. They probably worried I would allow a diagnosis to change my relationship with my child. Perhaps they feared I would use the diagnosis as an excuse, instead of addressing the problems. Or what if he grew out of the diagnosis? His childhood would then suffer from being over-diagnosed, over-medicated. But by using watered-down diagnoses, we wasted time.

Nevertheless, part of being an advocate is being tenacious. Although I didn’t have the answers, as his representative, I continued to ask the questions. Children don’t know how to ask for themselves. They rely upon a parent to do so for them. Even if doing so is terrifying and brings with it an enormous fear of being wrong and looking foolish. It is difficult. Every time I wanted to give up, I reminded myself of his age and that he would only be a child for a few more years. He did not comprehend the problem, let alone know how to insist he get help. Waiting until he was old enough to acknowledge his issues on his own was too risky. Being complacent, because it felt better for me, would have robbed him of valuable time to learn how to adjust to his chance at normalcy. As his mother, it was my job to find the words, read the books, journal concerns, ask the questions, and not stop until the world made sense. I learned to put the shame away and embrace vulnerability. I told our secrets to the providers and understood that judgment would come — all on my son’s behalf.

We received excellent care from providers over the years. But first, we had to get past the providers that were not helpful enough and became obstacles. I remember receiving advice from a therapist to ask my family doctor for medication for my son. The great thing about family doctors is that they know a little about everything. I needed an expert who recognized that my son’s behavior differed from other boys his age. My doctor did not take my concerns seriously. I won’t say he belittled the situation, but he was very casual in his approach when I needed more.

Eventually, a psychiatrist replaced my family doctor, and I saw the difference between how the psychiatrist treated us and how my family doctor did. The psychiatrist partnered with me, as the parent, to see from my side what could be the cause of my little boy’s problems. I had observations, and they were of value. Where my family doctor humored me in giving him small doses of medication, the psychiatrist took the time to listen to my concerns and created a treatment plan tailored to my son. I knew little about these medicines. But with the partnership I felt with the psychiatrist, I trusted that we were at an excellent starting point.

Having a good therapist was equally important. A good therapist will extend a hand and join in the fight for a child’s improvement. It wasn’t easy to begin this relationship. There were unwritten rules to learn. However, the more invested I was in helping my son, the more invested the therapist would be. It was tempting to drop him off for his weekly appointments and use that hour to run errands. Instead, I sat in the waiting room and waited. I waited to ensure all went well during the sessions, and to be available for clarification. Remaining in the waiting room quelled my anxieties if my son walked out of a session in anger or haste. I stayed in that seat because it showed how committed I was to make things better. In return, I had an accessible partner in his therapist.

With any habitual style of coping, recognizing the patterns is the first step towards change. Often I observed my dance of two steps forward in progress and then one step back into paralysis. Yet, this dance does not define my inability to face the cold, hard truths- it represents my humanity. It only becomes shameful to me because I don’t cut myself a break; I expect perfection with no steps backward. And by succumbing to that shame, it starts the pattern all over. Many years of this dance has taught me to recognize the positive strides and to be proud of them. It is in my perfectionistic ideals that cause my paralysis. Realizing I have done it again allows me to push past the avoidance and change the inaction into more forward action. I take a deep breath, sit with my thoughts quietly, and let my curiosity lead the way.