"I’ve been called a liar by my own therapist." Stop blaming me for my son's mental illness.


This post deals with abuse and mental health issues and might be triggering for some readers.

The conference room filled up fast. Sixteen social workers quickly tried to file into the 10 remaining chairs around the oblong table. Someone went to get more chairs.

The Director of Operations for the child care agency hosting this meeting saved me a seat at the head of the table. She held the highly regarded title of Director of Operations, but she gave me the best seat in the room. I had the title of Parent, yet, this chair would symbolise a false sense of importance.

The seat, with plenty of room to stretch my legs, and a proper place for my purse if I had bothered to bring one. I would have gladly taken the folding chair like literally everyone else present because at least they were getting paid to be at the meeting.

I got the leather swivel chair. I was also offered a glass of water.

I wanted their lives. I wanted to switch places right there. Sitting at the head of the table also put me in the hot seat. I was tired, with my lack of self-care clearly showing on my face and body.

I had a four-year son who didn’t sleep. He had already been to one inpatient psychiatric hospital and was on several medications for behaviour no one explained, understood, or offered any appropriate support.

I was there to discuss his in-home behavioural management which the agency hosting the meeting had recently decided to end.

I had managed to put on skinny jeans and an oversized blue sweatshirt that morning. It’s the sweatshirt I wear around the house. There was someone’s snot on my left shoulder. Chocolate or something brown stared back at me from the sleeve cuff.

I felt these meetings were designed to make the parents stand out. Barely washed and looking frail and worn, I already didn’t seem up to the challenge of a worthy parent.'

This post deals with abuse and mental health issues and might be triggering for some readers.

The conference room filled up fast. Sixteen social workers quickly tried to file into the 10 remaining chairs around the oblong table. Someone went to get more chairs.

The Director of Operations for the child care agency hosting this meeting saved me a seat at the head of the table. She held the highly regarded title of Director of Operations, but she gave me the best seat in the room. I had the title of Parent, yet, this chair would symbolise a false sense of importance.

The seat, with plenty of room to stretch my legs, and a proper place for my purse if I had bothered to bring one. I would have gladly taken the folding chair like literally everyone else present because at least they were getting paid to be at the meeting.

I got the leather swivel chair. I was also offered a glass of water.

I wanted their lives. I wanted to switch places right there. Sitting at the head of the table also put me in the hot seat. I was tired, with my lack of self-care clearly showing on my face and body.

I had a four-year son who didn’t sleep. He had already been to one inpatient psychiatric hospital and was on several medications for behaviour no one explained, understood, or offered any appropriate support.

I was there to discuss his in-home behavioural management which the agency hosting the meeting had recently decided to end.

I had managed to put on skinny jeans and an oversized blue sweatshirt that morning. It’s the sweatshirt I wear around the house. There was someone’s snot on my left shoulder. Chocolate or something brown stared back at me from the sleeve cuff.

I felt these meetings were designed to make the parents stand out. Barely washed and looking frail and worn, I already didn’t seem up to the challenge of a worthy parent.'

I looked around and felt out of place. Every single person was wearing makeup, carrying their leather briefcases against their unwrinkled cropped khaki pants, and stepping lightly in their cheap faux leather ballet flats from Target.

Social workers don’t get paid very much.

Dominic was born with microdeletions on his 15th chromosome and was very sick when he was born. Ignoring concerns from his biological mother, doctors dismissed his symptoms. Dominic was shaken four separate times between three weeks and five weeks.

By the time he stopped breathing at 11.08 pm that cold, snowy evening in January, he had 15 broken bones and bleeding in his brain that left him permanently disabled. I was Dominic’s third foster home at 15 months. I adopted Dominic the following year.

Dominic had a range of challenging behaviours that sounded ridiculously impossible to believe at times. He seemed compelled to throw objects with lightning speed and precision in an almost catatonic state. He never stopped moving, even in his sleep, when he did sleep – which was never. He behaved as if he was exercised by a demon, who sometimes dolled out hugs and kisses and sweet songs that made you love him. He could also throw a punch.

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 caseworkers, and had my parenting on display for the entire town to scrutinise. 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 behavioural 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 53 kilograms. I cried in that brown swivel office chair in front of 16 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 endeavour 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 neighbour’s daughter got cancer, the whole neighbourhood showed up for meals, rides, and dog sitting. Neighbours 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 45 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 realised 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 lifesaver, 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 behavioural issues in nursing care."

Silence.

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."

Silence.

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 eye again and said, "Well, you suck it up just like every other mother."

I didn’t respond. I realised it was my abilities as a mother that were being called into question. My reserve, my tenacity as a person. Dominic’s behaviours, 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. 

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 realised 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 lifesaver, 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 behavioural issues in nursing care."

Silence.

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."

Silence.

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 eye again and said, "Well, you suck it up just like every other mother."

I didn’t respond. I realised it was my abilities as a mother that were being called into question. My reserve, my tenacity as a person. Dominic’s behaviours, 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 still feel it is 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 stigmatised for their children’s chronic mental health illness. Then their children are stigmatised 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 will I gasp for the next one. There was no thought for my future except trying not to drown.

If you think you may be experiencing depression or another mental health problem, please contact your general practitioner. If you're based in Australia, please contact

  • Lifeline 13 11 14 for support or
  • beyondblue 1300 22 4636.

(Source)


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