The conference room quickly filled up with sixteen social workers scrambling for the ten available seats around the long table. Someone was dispatched to fetch more chairs.
The Director of Operations for the child care agency convening this meeting saved a seat for me at the head of the table. Though she held an esteemed title, she provided me with a seat that represented a misleading sense of importance. As a parent, I occupied this chair, but it felt more like a symbol of my exhausting reality than a position of honor.
With ample space to stretch my legs and a designated spot for a purse I didn’t bring, I would have preferred a folding chair like everyone else. At least they were being compensated for their presence at the meeting.
I got the plush leather swivel chair. I was even offered a glass of water.
In that moment, I wished I could trade places with any of them. Sitting at the head of the table also meant I was under scrutiny. My fatigue was visible, etched in my face and posture.
I was the mother of a four-year-old son who rarely slept. He had already experienced one inpatient psychiatric hospitalization and was on multiple medications for behaviors that no one could clearly explain or assist with.
I was there to discuss the termination of his in-home behavioral management, a service the agency had recently decided to discontinue.
That morning, I had managed to squeeze into skinny jeans and throw on an oversized blue sweatshirt—the same one I wore around the house. A smear of someone’s snot stained my left shoulder. Something brown, possibly chocolate, stared back at me from my sleeve cuff.
These meetings seemed purposefully designed to highlight how different I was from everyone else. I looked worn and frazzled, hardly the image of a capable parent.
Scanning the room, I felt out of place. Every other person appeared polished, wearing makeup and clutching leather briefcases, their cropped khaki pants unwrinkled, and their steps graceful in cheap faux leather flats from Target.
Dominic was born with microdeletions on his 15th chromosome and was critically ill at birth. Despite his biological mother’s concerns, doctors dismissed his symptoms. He endured four separate incidents of being shaken between three and five weeks of age.
By the time he stopped breathing on a frigid January night, he had fifteen broken bones and brain bleeding that left him permanently disabled. At fifteen months, I became Dominic’s third foster home, adopting him a year later.
Dominic exhibited a range of challenging behaviors that sometimes felt unbelievable. He seemed compelled to throw objects with astonishing speed and precision in near-catatonic states. He never ceased moving—even during the rare moments he did sleep. He often acted as if possessed, alternating between affectionate hugs and sudden aggression.
I’ve been labeled a liar by my own therapist and by social workers who had never witnessed Dominic’s fragile emotional state. Conversely, I’ve also been hailed as a saint by those who knew him or had worked with him—a title I felt was undeserved.
People discussed me behind my back, while my parenting was laid bare for the entire town to scrutinize. Yet through it all, I remained mostly calm and patient, despite feeling justified in my occasional anger.
I was a solitary advocate for my son’s right to exist and thrive within his community. I didn’t have the luxury of being a martyr, accepting help and advice whenever it was offered.
The meeting unfolded as they typically do, allowing me to discuss Dominic’s behavioral issues without challenge. I described his insomnia, constant movement, and insatiable need for engagement. I had worn myself down to 118 pounds, crying in that brown swivel chair before sixteen strangers who would undoubtedly record my exhaustion in their files.
No one offered me a tissue, a hug, or even a kind word. I sat there, spilling my sorrow without reservation. For some, it could have been a turning point, but for me, it was just another Wednesday in the life of a parent expected to raise a chronically ill child.
Society places the burden of parenting squarely on individual parents, narrowing the cultural spirit to the notion that raising children is a solitary endeavor, rarely seen in other cultures throughout history.
In essence, your children, your problem.
How do parents manage children who exist outside the norm? Those who have faced abuse, are adopted, or have special needs? When parents arrive at their wit’s end, how do we respond?
When my neighbor’s daughter was diagnosed with cancer, the entire community rallied around her with meals, support, and kindness. She received attention and celebration for her story, which was truly extraordinary.
While I didn’t crave that level of recognition, I yearned for a different kind of treatment from those I sought help from in raising my chronically ill son. I wanted my parenting to be respected, rather than questioned, and I wished to avoid the stigma that came with my son’s erratic behavior.
I didn’t want to feel trampled on for forty-five minutes while holding Dominic through a tantrum in a parking lot. I didn’t want to be discharged from a children’s hospital while my son was seizing because his loud cries disturbed other families.
Their children were sick and deserved peace to heal. My son was told to recover at home.
Dominic deserved a stable and loving home life. He deserved a chance to be part of his community, not relegated to an institution or prison. I needed assistance—a helping hand to support our family. I had to quit working to care for Dominic after he was expelled from a special needs preschool and couldn’t find a traditional daycare.
Help came in the form of “wrap-around” services in my town. Nonprofit agencies offered this assistance to eligible children diagnosed with Autism as a temporary measure to teach parents how to raise their children.
An assessment determined the number of “service hours” per week, during which someone would come to my home. I was still required to stay within three feet of Dominic and handle most of the parenting. This was challenging, as Dominic was always on the move, like a wolf on the hunt.
Daily, I had people in my home, some of whom recognized that Dominic was not a typical child. They allowed me the freedom to step away to do dishes or prepare meals for my older child without resorting to strapping Dominic into a car seat for his safety, a method suggested by a therapist that had become a lifesaver—until Dominic learned to walk around with it like a turtle.
However, this “wrap-around service” ultimately blamed me for my perceived failure as a mother. It implied that I needed to be taught how to manage my child, culminating in a fantasy of a happy family.
Eventually, the service was denied because Dominic “could not ever meet goals.” In truth, the service was essential to our family’s survival, and since it could never conclude, it had to be stopped.
The meeting room fell silent. A few social workers suggested services that had previously been denied for Dominic.
“What about nursing care?” someone inquired from the folding chairs.
“He can’t have behavioral issues in nursing care,” was the response.
Silence.
I thought aloud, what about the service we already had? It wasn’t a perfect fit, but it worked for our family.
The Director of Operations, with her perfectly styled dark hair, replied, “It’s a temporary service, and it’s for teaching parents. It’s not the right fit.”
Silence.
“I can’t imagine managing without it,” I admitted. “I can’t keep up caring for him and maintaining our home. Last night, I was doing dishes at midnight.”
Then she looked me in the eyes and said, “Well, you suck it up just like every other mother.”
I held my tongue. It became clear that my abilities as a mother were under scrutiny. My strength and resolve felt called into question. Dominic’s behaviors, while well-documented, seemed exaggerated in their eyes. I feared I was being seen as someone taking advantage of services meant for other children.
I worried that speaking up would paint me as a victim. I wasn’t a victim. I didn’t know what I could say that would change their perceptions of me or my family.
Anger bubbled inside me, and I tried to keep it in check, hoping to “win more flies with honey,” as I had been told. I wanted to be the compliant parent, deserving of their approval.
I was exhausted from being portrayed as an incapable mother to my son. Leaving that meeting, I felt overwhelmed, trying to suppress the emotions that haunted me for days. The feeling of failure echoed in my mind, leaving me emotionally drained as I continued the daily battle just to survive.
I often refer to my time with Dominic as my “dark days” to humorously distance myself from the pain and trauma of that period, even though it serves as a reminder of how far I’ve come.
The overwhelming joy that is Dominic persists, bringing me to my knees in search of relief regularly. But those were not the “dark days” when everything truly fell apart.
I have been continuously blamed for my son’s mental health challenges. As I advocate for him, I frequently encounter comments suggesting I must have been a terrible person to raise such a difficult child.
“Grow up. Suck it up. Your child, your problem.”
Ironically, there have been instances where Dominic received better treatment due to his backstory. The narrative of his abuse and subsequent “rescue” made him more deserving of opportunities, such as remaining in a public school.
The Director of Special Education at my son’s school district, for example, was reassured by the story of my son, who has “good” parents and a compelling background.
I am not a perfect parent, but I am not a bad one either. I’m average, but it feels unjust that I still have to recount a thirteen-year-old story to advocate for my son’s rights under federal law.
I shouldn’t have to share that narrative to fend off undeserved blame or seek understanding from neighbors disturbed by Dominic’s stomping.
Yet I feel compelled to tell this story so that others will refrain from judgment and shame. Unfortunately, judgment and shame remain prevalent. Parents of children with chronic mental health issues face stigma, and their children experience similar treatment as adults when struggling with addiction.
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Summary:
The journey of parenting a child with mental health challenges can be isolating and fraught with judgment. The author reflects on her experiences in a meeting with social workers, highlighting the stigma faced by parents of children with special needs. As she navigates her son’s complex needs, she confronts societal expectations and the emotional toll of being blamed for her child’s difficulties. Despite the challenges, the author remains committed to advocating for her son’s rights and well-being, emphasizing the need for understanding and support.
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