Letter to a Parent Who Triggers
“…misophonia has not broken our bond and power, as mother and child.”
Dear Fellow Parent,
Are you your child’s worst trigger? I am and have been for years. If you are the source of your child’s suffering, this letter is this for you.
You’re not alone.
Your child’s misophonia is not your fault. The fact that your child (perhaps violently) reacts to you is not your fault. You’ve done nothing to cause or create misophonia. You’ve done nothing to make your body’s sounds and/or sights become your child’s triggers.
My son, Thomas, has misophonia. His most virulent triggers come from my body and voice.
Sights and sounds emanating from my body fill Thomas with rage, laced with lingering disgust. The slope of my jaw and sound of my breath can reverberate through his mind and body for hours. In moments we are together, my son’s anguish can be visible. He sometimes flinches and winces, fists clenched, voice even tighter.
My child suffers in my physical presence.
That is a terrible sentence to write. It is a terrible truth to live, but it is mine, and possibly yours, or something similar.
Thomas is also triggered by his father, brother and sister, people and objects in the environment. The sights and sounds of daily life can be dangerous, the big open world that should be his for the taking threatens to crush him instead.
When my own sorrow threatens to distort my vision—and it does, often—I think about Thomas, who was just 10 when his universe crumbled, when he lost easy intimacy with the people he loved and needed most: his father, big brother and sister, me. Four people who would give anything to take that unruly world and shake it right for him, starting with ourselves. Instead, misophonia severed and threatened to break all of those relationships.
Misophonia holds pain for each person in a family.
But that isn’t the end to any story, mine or yours. Pain and struggle inaugurate the journey. Love, intimacy, and hope show up to carry us through.
Thomas was 15 years old when we first heard the word misophonia. We followed our son’s lead. We accommodated. We reshuffled expectations. We redesigned life’s daily blueprint. We protected our child from the disregard of extended family and former friends. We protected him from imagination too dim for empathy. We sacrificed small comforts and conveniences for his well-being.
We sacrificed big things, too, and still do, especially, mostly, always me—a mother who can’t touch or talk to her child without causing pain.
Thomas is now a young adult, a newly minted twenty. The distance he needs to keep from me remains. For a painful, long while, that distance was rock-solid, impenetrable.
How long was that while? Months, then years.
I witnessed my son’s high school life from around a corner and behind a curtain. I skipped every single social and sporting event so that my child could participate with one less worry. I didn’t become friends with other parents, volunteer, throw potlucks and parties. I removed myself from Thomas’ orbit. When Thomas walked in, I walked out. When Thomas needed love’s warmth and touch, I stood aside as his father and sister stepped forward.
These were years of physically falling back, not giving in or giving up. These were years of invention. The wheel didn’t work after all. We would need to invent our own.
You might too. Re-inventing what family means can be done again and again and again until it fits yours, uniquely.
In our family’s wacky world, a holiday means three floors, attic to living room. We communicate with video cameras, Facetime, Zoom, texts, occasionally the old-fashioned holler. Family time is a creative collage, who can be together, where and for how long. Meals don’t hold the center. We haven’t eaten a meal as a family for years and don’t anticipate doing so in the near future—and nobody suffers one bit because of this.
When Thomas lived at home, he was separate, but not always solitary: texts, emails, post-it notes, cards, small gifts. I might not be able to talk to my son, but I can tell him I love him in other ways. In fact, staying silent and out of sight speaks volumes: I recognize and respect your needs, I love you.
Today, the distance between Thomas and me remains. However, who and how we are in that space has changed. Distance isn’t always threat or sorrow. Distance has helped Thomas grow stronger.
Thomas moved into his own apartment a year ago. Moving out of the family home helped our son as it has helped others. Anecdote—not science or empirical evidence—hints that young people often experience a surge of well-being when they move out of their family’s home. That good fortune happened for us.
Thomas and I are sometimes now in each other’s physical presence—one, two. . . even ten minutes. When he comes home to visit the family dog or pick up mail, he seeks me out instead of running. He’ll position himself, just so, around a corner or behind a door. Safe from seeing me, he can talk—we can talk, something I never thought possible again.
The world hasn’t crushed him, either. Thomas collects friends everywhere he goes. He’s busy with mini-golf or playing squash, hanging out with friends in his apartment. After high school, he began the path toward becoming a firefighter, a lifelong dream.
When that dream came true, the mother he can’t see was the person he called first.
Thomas suffers in my physical presence. That truth is still terrible. The list of what we cannot do together (ways we cannot be together) is long. We have both missed so much.
Yes, grief has a permanent place in my heart—nestled alongside love and hope. Thomas and I may not be together physically, but misophonia has not broken our bond and power, as mother and child.
You will find a way forward, too.
Image:
Saÿen, H. Lyman. Untitled (Flowers). Date unknown. Smithsonian American Art Museum. Public domain.