advocate

Your Child’s Best Advocate

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“You are your child’s best advocate.” How often have I heard these words uttered in affirmation, intended to empower? Before my child needed an advocate, I was just his mom.

I carried him, nurtured him, and loved him so deeply. Always a snuggly bug, he would pull my hand into his crib, form it to cup his cheek, and then fall asleep. Beginning with our first winter walk when he was just days old, we have been “explorers” together, sharing our wonder at this beautiful world.

His father and I have grown along with him, formed by our first child. We can see through his lens and have adopted it as our own. We have accepted and adapted to his affinities and aversions, bridging the gaps in his communication with habitual responses that make the days seem typical. When he was two and three, we shared his excitement about street signs, touching each one we walked past at his not-technically-verbal insistence. We are a little system. Interdependent.

Of course, we are uncertain, unsteady at times. Aren’t all parents? Worries simmer subconsciously, then bubble into questions tentatively voiced into reality. Can he hear me? Why the calm, curious gaze in the face of stern reprimand? We stretch to count his words. We assess. Alongside his little fuzzy-headed peers, we see growing gaps that aren’t quite bridged by “He’s just a boy.” The screening checklist opens up questions. Does reaching count as pointing to what he wants? The questions pile up. Why not get more information, I ask, with naiveté.

Questions yield home visits, questionnaires and interviews, play therapy, and an abundance of resources. Distrust, anger, resentment, and confusion—expressions of grief—swirl inside me but I push them down. These teacher-therapists are delightful and caring. He enjoys their games, their attention. At times, he is also clearly miffed as they interrupt his intense focus or urge him to make choices and use words. I observe, being coached in strategies for joint attention and communication and collecting visual schedules. He enjoys this and it can’t hurt! This isn’t about me. I shouldn’t stand in the way of what he, apparently, needs.

“You are your child’s best advocate.” At first, I embrace the role with pride. I bow my head to receive this imaginary metal around my neck. Chest out. Chin up. Yes, his best advocate, indeed. They say I am just who he needs, a perfect fit. He is lucky. We seek private therapy as well, more practice, more resources. Around this growing table of other advocates for my child, they speak in a different language, a technical one. They have systems, paperwork, and assessments. I ask insightful questions, do additional reading, striving to master this new terrain.

I not only surmise that just being his mother is not enough, I assume that just being his mom could be a liability. I read far too much. I read about causes of autism and question my prenatal health, our tap water, my stress levels, and every single thing I have put in either of our bodies. I read about children and families vastly different from my own. For every glimmer of insight they offer, they cast a vast shadow of fear into our future. With only two years under our belts, we sense that our rhythm, our interdependent system was a farce and there is so much future to fear.

I weave the technical language and strategies into my understanding of my child and my role. I see myself as part of a system of supports and interventions to support his development. I am his best advocate because I am all encompassing—both parent and therapist. “Prognosis: Very good due to family support and carry-over of recommended activities as part of home programming,” the rehab treatment plan asserts.

But I cannot encompass so much. This metal I wore with pride is heavy. My shoulders ache. My head spins. My legs ache from the moment I wake. I feel a distance from this precious child sitting before me. Two veils have settled between us—one is my grief and the spinning questions that won’t subside and the other the strategies that a good advocate would take up better than I have. I am not enough. I cannot reach him anymore, but it is not because of autism.

Author: Beth

Beth is a wife, mother, researcher and connector. Her five-year-old son has autism, and she has a preschool-aged daughter. She has a PhD in Education and has conducted research and evaluation focused on youth and community development. She lives in St. Louis Park, Minn.

One Comment

  1. I can’t tell you the number of journal entries I wrote saying the same thing…I am not enough. When you do everything the “experts” say you should do and are told “what a great advocate” you are and yet watch other kiddos move so quickly beyond your own it breaks your heart. It broke my heart for awhile….I grieved…then I found one truth to hold on to. I love my son. And he KNOWS he is loved!!!! Twelve years and counting into this journey that is what keeps me going. I still worry that I am not doing enough….I still grieve. And then he asks for “tickles” and then he screams with laughter and smiles and looks me right in the eye…and maybe even gives me a hug if I am really lucky :). And I again go back to the truth that he KNOWS his mom loves him. And that IS ENOUGH!

    Hold on and take care….

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