The Shame That Comes With Having A Mentally Ill Child
I’ve been called a liar by my own therapist, and by social workers never having laid eyes on his fragile and delicate emotional state. I’ve been called a saint by everyone who knew him, or has worked with him. A title I really didn’t deserve.
I’ve been talked about behind my back by case workers, and had my parenting on display for the entire town to scrutinize. Throughout, I was pleasant, mostly peaceful, and patient. I was sometimes angry, but felt I was entitled to be angrier if I let it.
I was a lonely advocate for my son’s right to exist and participate in his community. I was in no place to be a martyr, taking responsibility and advice whenever I could get it.
The meeting began as these meetings tended to begin. They gave me some sense of authority by letting me talk about Dominic and his behavioral habits unchallenged. The insomnia, the constant moving, never stopping, always climbing, running, breaking, throwing, and peeing. The constant attention and engagement he required never seemed to be enough. I had run myself down to 118 pounds. I cried in that brown swivel office chair in front of sixteen strangers who were sure to note my exhaustion in their files for my permanent record.
No one offered me a tissue, or a hug, or their hand. I sat there spilling my sadness all over the place without caution. It could be someone’s rock bottom, but for me it was just a Wednesday for the child I was expected to raise.
Expected. I was expected to raise my own children. That was the burden our society put on parents. Our individual spirit as a culture narrows itself to the idea that parenting is a singular venture. An individual endeavor rarely seen in few places in any other culture in history.
In other words, your children, your problem.
How did parents raise children who lived outside of typical experiences? Children abused, or adopted. Children with special needs, or children who develop chronic illnesses and diseases. Children with cancer. When parents show up exhausted and starving for help, how do we treat them?
When my neighbor’s daughter got cancer, the whole neighborhood showed up for meals, rides, and dog sitting. Neighbors mowed their lawn, watered their plants, and did their laundry. She went to Disneyland and Disney World, was interviewed on the Today Show, and was celebrated in town parades, along with countless newspaper stories and articles. She deserved all of it. She deserved every second of that journey. Her story is Amazing.
I didn’t want or need that kind of attention, but I wanted to be treated differently by the people I asked for help in raising my chronically ill son. I didn’t want my parenting to be called into question, kicked out of places because of my son’s erratic behavior, or have people call the police on my family.
I didn’t want to be walked over and stepped on for forty five minutes while I sat in the parking lot of a bank holding Dominic in a tantrum. I didn’t want to be discharged from a children’s hospital while my son was seizing because his loud screaming on the unit made other parents uncomfortable.
Their children were sick and deserved quiet to get better. My son was told to get better at home.
I felt Dominic deserved a stable and loving home life. He deserved a future as a member of his community, not sitting in an institution or jail cell. I needed a little help, though, simply just an extra set of hands at times to support our family. I had to stop working to care for Dominic because he was expelled from a special needs preschool, and couldn’t get into traditional daycare.
That opportunity came in what was called “wrap around” in my town. Non profit agencies provided this service to eligible children diagnosed with Autism as a temporary measure to teach parents how to care for their Autistic Children.
An assessment determined “service hours” per week when someone would come into my home. I still had to be within three feet of Dominic, and had to do most of the parenting. This was difficult as Dominic was “on the go” like a wolf seeking prey.
I had people coming into my home daily, and some realized this was not a typical or textbook child, and let me wander further from three feet to do dishes, or make lunch, or care for my older child without resorting to putting Dominic into the car seat I bought just for my living room as a way to keep Dominic safe. It was recommended by a therapist, and was literally a life saver, especially when I had to go to the bathroom.
Until Dominic learned to walk around with it strapped to his back like a turtle. All good things come to an end.
This “wrap around service,” was still, at its heart, blaming me for my failing as a mother. It assumed I needed to be taught the correct ways to deal with my child culminating in a fixed situation with a happy family.
This was not going to happen for Dominic. After a time the “wrap service” was denied because Dominic “Could not ever meet goals.” Quite simply, the service could never end, which was true. It was a lifesaving help to our family, and because it could never end it clearly had to stop.
The meeting room fell silent. A few social workers offered suggestions for services Dominic had been previously denied.
“What about nursing care?” A voice from the folding chairs asked.
Someone responded, “He can’t have behavioral issues in nursing care.”
I’m thinking out loud, what about the service he had? This is not a perfect fit service, but it was working for our family right now.
The Director of Operations, with her sleek dark brown hair curled expertly at the ends replied, “It’s a temporary service, and it’s for teaching parents. It’s not the right fit.”
I replied, “I don’t know what I will do without it. I can’t keep up caring for him and our home. Last night I was doing dishes at midnight.”
Then, she looked me in the eyes again and said, “Well, you suck it up just like every other mother.”
I didn’t respond. I realized it was my abilities as a mother that were being called into question. My reserve, my tenacity as a person. Dominic’s behaviors, although thoroughly documented by plenty of her staff, felt exaggerated. I was taking advantage, or taking away service from another autistic child they could save.
I felt if I said anything more it would make me look like I was trying to be a victim. I wasn’t a victim. I don’t know what I would have said that would have made any difference in the way they thought about me or my family.
I was angry and was trying to remain in control of that emotion. Trying my best to “win more flies with honey,” as I had been told. Being the good girl, doing the right thing, and deserving of their prize.
I was tired of being blamed as an incapable mother to my son. I left that meeting in a wasteful heap of emotions that I tried mercilessly to shut out for several days. To feel that kind of failure was a condescending voice of displeasure talking to me in my brain non stop. It was emotionally devastating and physically exhausting as I continued the daily struggle just to survive.
I eloquently refer to the time with Dominic as my “dark days” as a humorous way to avoid feeling the pain and trauma associated with it, and a reminder that those days are over.
The incessant rapture and delight that is Dominic continues, and it still brings me to my knees seeking salvation regularly, but it was not the “dark days,” when everything really came crashing down.
I have been continuously blamed for my son’s mental health. As I advocate for him regularly, I often get comments that assume I must be a terrible person to have raised such a monster.
Grow up. Suck it up. Your child, your problem.
Moreover, there have been many times Dominic actually got treated better because of his story. Implying that because he was abused, and subsequently “rescued,” he was deserving enough to remain in public school because his story of abuse is compelling and evokes an emotional response.
It reassured the Director of Special Education at my son’s school district (calling that one out) that Dominic has “good” parents, has a sad story, is white, and should be given a chance. All because Dominic’s teacher had my permission to tell his story.
I am not a perfect parent, but I am also not a bad parent. I’m average, but it’s hardly justice for Dominic that I still need to tell a thirteen year old story to advocate for what my son is entitled to have under federal law.
I shouldn’t need to tell that story to avoid unnecessary blame, or seek empathy from our downstairs neighbor who doesn’t like Dominic’s stomping.
I still feel it’s something I have to share with people so they don’t judge or shame me. Mostly because they still do plenty of judgment and shame.
Parents are stigmatized for their children’s chronic mental health illness. Then their children are stigmatized as adults when they struggle with addiction, homelessness, or mental illness. Push mental health aside as a parent’s poor judgment, then push mental health aside because they are an adult who should behave differently.
I left the meeting feeling like I couldn’t breathe. The air in my lungs sucked out of me as I embraced my new normal. I floated along the edge, lifting my head above water just enough to gasp for each breath, only having the time to think how I will gasp for the next one. There was no thought for my future except trying not to drown.