Years before getting my Ph.D. I worked as an academic counselor in Student Affairs. It was there that I learned to do what I called a “temperature check” with my students, I would ask every student during their weekly visit whether they were swimming, treading, or barely able to keep their head above water. It was a good way to assess whether they needed my intervention and if so, what kind of service they needed. Years later I have found that this is a good way for me to stop and assess my stress levels, check my son’s condition, and the gauge the condition of my family in general. Well, if asked the question today, I would have to say that I am treading water and barely able to keep my head level. I am tired and my family (particularly my son) has just come through one of many crises. We are now trying to clean up/rebuild and recover, which means that my condition, can best be described as precarious.
My son has autism and a mood disorder, and if this weren’t enough – he is sixteen years old. If you are or have ever parented a teen, then you already know that a sixteen-year-old is a frothy mix of toddler, child and adult. He is brilliant and remarkably social for a kid with Autism. He has friends, is maintaining a 3.5 in school, and is independent enough to take public transportation to and from home. But he only has two gears, and when not on meds his days are spent moving between ecstasy and despair until finally his entire system crashes and he falls into a deep coma-like sleep. His medication, when he takes it, keeps his moods regulated, and then he only has the sensory, balance, and social effects of his Autism to manage. But he is sixteen, willful, and craving independence. Right now, the area where he asserting control is his medication. Which is perfectly normal and understandable, who doesn’t want to control what goes in and out of their bodies, right? So, we are trying to ride this wave which places us (me, him and his dad) in this painful push and pull where we constantly struggle between his real desire for independence and his equally real need of our guidance.
At this moment, however, I feel like a fraud. Who am I to write in the position of advocate when I can’t even convince my own son of to take his meds, and if not his meds then at least eat something decent. Why would anybody want to hear my story? After all, I have no happy ending tied up in a neat bow. We are in the middle of a life long journey and I have no conclusions, only process. As a mom, I spend most of my time coordinating appointments, negotiating with insurance companies, and conferencing with doctors, therapists, and teachers. It is hard to think of my mom work as advocacy. In fact, most of my knowledge of advocacy comes from studying public policy where advocates are described as activist or professionals who work (publicly) on behalf of a cause or group to affect political change. Merriam Webster defines advocate as “a person who publicly supports or recommends a particular cause or policy.” Some synonyms for advocate are “champion, supporter, backer, proponent, fighter, and crusader.” Incidentally, Webster’s definition of mother is “a woman in relation to her child/children,” and mothering is “bringing up a child with care and affection.” Nowhere in these vague definitions of mother/mothering are the words championing, supporting, or crusading, but this is nevertheless what we do. If you have a child with a mental illness or disability caring, nurturing, championing, supporting and crusading is what you are almost always doing. If you ask my son, I am his biggest supporter and worst enemy. I did mention he is sixteen, right?
At Mother’s on The Frontline we want to enhance the notion of what it means to be an advocate. If you are a mom and you are negotiating your child’s 504/IEP, then you are an advocate. If you are sharing your story with and supporting other mothers of children with mental illness and disabilities, you are an advocate. When you coordinate a plan between the psychiatrist, counselor, and coach so that your child can participate in a sport (or activity), you are an advocate. We want to know about your process, how you survive, thrive, how you fall and get up. Personally, I have learned as much if not more from the moms who talk candidly about their experiences raising a child with mental illness than I have from pediatric sites, cookbooks on diet/nutrition, and the pamphlets that litter doctor’s offices. It is our goal that this site be both resource and refuge. A place where you come to share as well as learn. Here at Mothers on the Frontline, we recognize your mothering as advocacy and your story as valuable. We want to hear from you. Whether you are swimming along, treading in place, or barely able to keep your head above water, we believe your voice and your experience matters.