The conference room quickly filled with social workers eager to secure one of the limited chairs around the long table. Someone rushed off to fetch additional seating. The Director of Operations for the child welfare agency hosting the meeting graciously saved a spot for me at the table’s head. Though she held a prestigious title, it felt like I was given a seat of false importance. I was just a parent, but this chair seemed to elevate my status.
With ample room to stretch out, I found myself wishing for the folding chair everyone else occupied, as they were at least being compensated for their time. Instead, I settled into the leather swivel chair, receiving a glass of water as well.
In that moment, I envied the lives of those around me. Sitting at the head of the table put me in a spotlight that I wasn’t prepared for. I was exhausted, my lack of self-care evident in my appearance. My four-year-old son, Ethan, had trouble sleeping, had spent time in a psychiatric hospital, and was on multiple medications for behaviors that were poorly understood.
I was there to discuss the termination of his in-home behavioral management services, a decision made by the agency without consideration for our unique circumstances.
That morning, I’d put on skinny jeans and a worn blue sweatshirt—my usual home attire. A stain of some unknown origin marred my shoulder, and something brown smeared across my sleeve. I felt out of place, surrounded by well-groomed professionals in makeup and polished attire, each looking like they stepped out of a catalog from a high-end store.
Ethan was born with microdeletions on his 15th chromosome and faced numerous challenges from the start. Despite concerns raised by his biological mother, doctors overlooked his symptoms. He was shaken multiple times within weeks of his birth, and tragically, by the time he was one month old, he had suffered significant injuries that left him with permanent disabilities. I became his foster parent at fifteen months and adopted him the following year.
Ethan displayed an array of difficult behaviors that seemed almost unbelievable. He was constantly on the move, even in his sleep, and could switch from affectionate to aggressive in an instant. I had been labeled a liar by my own therapist and questioned by social workers who hadn’t witnessed his struggles firsthand. In contrast, those who worked with him called me a saint, a title I felt I didn’t deserve.
I often felt scrutinized by case workers, my parenting laid bare for public judgment. Despite my efforts to remain calm and patient, I was sometimes overwhelmed. I was a lonely advocate for my son, trying to secure his right to a fulfilling life within our community. I wasn’t looking for martyrdom; I simply needed assistance.
As the meeting commenced, I was allowed to speak about Ethan’s behaviors without interruption. I detailed his insomnia, his constant energy, and the challenges he presented. I felt the weight of exhaustion as I shared my struggles, sitting in the brown swivel chair while tears streamed down my cheeks. No one offered me comfort; I was left to spill my heartache in front of strangers who would surely document my vulnerability.
Society imposes the expectation that parents should be able to manage their children’s issues alone. We are often made to feel that our children’s challenges are solely our burdens. Yet, how do we support parents who are raising children with special needs or chronic illnesses?
When my neighbor’s daughter battled cancer, the community rallied around her with meals, support, and emotional care. She received the attention and love she deserved, celebrated for her resilience. I didn’t seek that kind of recognition, but I wanted compassion and understanding from those I turned to for help with my son.
Ethan deserved a loving home and a future, yet I felt overwhelmed and unsupported. I had to leave my job to care for him, as traditional daycare was not an option. This led to what was termed “wrap-around services,” where agencies offered support to parents of children with autism. It was supposed to be a temporary solution, teaching me how to manage Ethan’s needs.
However, this service felt more like an indictment of my parenting skills, as if I were being blamed for not meeting unrealistic expectations. When the service was eventually terminated because it couldn’t meet specific goals, I felt the impact of that decision acutely.
The room went quiet as social workers suggested alternative services, but none felt like a good fit. When I expressed my concern, the Director of Operations coldly replied, “You suck it up just like every other mother.” Her words stung, making me feel inadequate as a parent. I left that meeting feeling emotionally drained, grappling with an overwhelming sense of failure.
I often refer to my time with Ethan as my “dark days”—a way to cope with the pain and trauma. Yet, those days taught me resilience. Unfortunately, I have faced constant blame for my son’s mental health challenges, often being told that it was my fault he struggled.
Despite this, there have been moments when Ethan received better treatment because of his backstory and the compassion it elicited. I shouldn’t have to share that narrative to advocate for his rights or to avoid judgment from others.
Parents of children with chronic mental health issues face stigma, and these challenges extend to their children as they grow into adulthood. The burden remains heavy, but I continue advocating for Ethan, hoping for a more understanding society.
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Summary:
This article explores the challenges faced by a mother raising a son with significant mental health issues and disabilities. It highlights the societal expectations placed on parents, the stigma surrounding mental health, and the need for community support. Through personal experiences, the mother shares her struggles for assistance and understanding while advocating for her son’s rights to a fulfilling life.
Keyphrase: My Son’s Mental Health Struggles Aren’t My Responsibility
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