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The anguish of having a child with mental illness Add to ...

For now, 12-year-old Molly isn’t strong enough to break down the bedroom door her mother hides behind when her daughter is trying to attack her.

“She’s raging every day. It’s often I’m locked in my room for two hours at a time,” says her mother Alli. (Both names have been changed.)

Molly, who in photos looks like any cheerful, happy girl her age, suffers from a condition called severe mood dysregulation. Due to a number of other problems, she has the mental capacity of a six-year-old. She does not respond well to medication, except for the occasional light sedation when in crisis. Despite the dangers, Alli is steadfast in her role as her child’s biggest fan and advocate.

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“She’s a lovely, lovely girl. She has no intent to harm me, but she does,” she says. “She is so disorganized, it’s almost like seizures when she gets to that point. And she’s so remorseful.”

In recent weeks, however, Molly’s psychiatrist has raised a new concern: That Molly may soon figure out how to use a knife as a weapon to harm – or kill – her mother. So Molly has been approved for full-time care outside the home.

It’s a warning that would be chilling at any time, but this week, parents of children with problems like Molly’s have a heightened awareness that the world is watching how they handle their troubled and often unreachable children.

In the aftermath of last Friday’s school massacre in Connecticut, questions are emerging around 20-year-old killer Adam Lanza’s mental health and whether his mother, Nancy, had tried to seek treatment for him. Idaho blogger Liza Long sparked a debate with her provocative blog post “I am Adam Lanza’s mother,” in which she outlined her overwhelming frustrations with getting her teenage son the mental-health care he needs – underlined by the fear that he, too, could be as deadly to others as Lanza.

Parents struggling with raising challenging children say that despite some of the criticisms of Long’s post – that she should have protected the privacy of her son, that she’d written some unstable musings elsewhere in her blog – this kind of anguish is all too common. In their darkest and most trying moments, parents can feel simultaneously fearful of their own children and fiercely protective of them. The sense that their community is non-supportive at best – and hostile and judgmental at worst – can compound the pain and stress that they live through every day.

“There are things that families with mental illness go through and think and feel that are unrelatable to anybody else,” says Sarah Cannon, the executive director of the St. Catharines’-based non-profit advocacy group Parents for Children’s Mental Health. Cannon’s daughter was diagnosed with bipolar when she was 5.

Peter Earley, who wrote Crazy: A Father’s Search Through America’s Mental Health Madness, about his struggle to understand and get help for his son who has bipolar disorder, says the angst starts on an existential note.

“It’s worse than awful,” says the Fairfax, Va.-based author. “The shock of having someone you love, who has your DNA, who you are trying to raise, become a complete stranger if they have bipolar or schizophrenia or another serious mental illness. I knew my son was in there, but you sure couldn’t see it through his eyes, his manners or what he was saying.”

Then, even if parents succeed at getting their children assessed and diagnosed, finding what Earley calls “meaningful care,” can be a Kafka-esque struggle for professional attention, psychiatric beds in hospitals, housing and other supports. In the case of Earley’s son, the journey has included multiple breakdowns, being arrested and even tasered by police. (He’s now 33 and stable, living independently, working as a peer-to-peer mental-health counsellor.)

It all takes an enormous emotional toll. In Alli’s case, though Molly has been approved for a spot in a facility, there is none yet available and no creative solutions for the short term.

“You are so angry and saddened because you can’t do anything for your child,” she says. “You’re at a loss, so emotionally drained, lost in their process.”

And that’s parents who already have a toehold in the system or are on the road to treatment. An upcoming mental-health white paper commissioned by RBC has found that more than half of Canadian parents have never discussed their children’s mental health with anyone and 27 per cent admit they would feel embarrassed if people found out their child had a mental-health condition.

For those just starting to grapple with their child’s troubles, experts say the key is to try and get your child assessed by health professionals.

“I don’t think anybody is unreachable,” says Jennifer Smith, a community mental-health co-ordinator at Lutherwood, a mental-health and social-services agency in the Waterloo, Ont. region. “I think all behaviour has a meaning. We have to really try to figure out what that means for that person.”

One challenge can be that a number of mental-health problems can manifest themselves during the teenage years, when, as Smith says, it can be difficult to diagnose. “Teenagers pull back from families; that’s kind of their job.” So, she says, it’s important to monitor what’s normal or abnormal for that particular kid. Any major shifts – and certainly self-harm or suicidal thoughts – are red flags.

Smith says she coaches parents to open up a non-confrontational dialogue with their kids about their concerns. And later, if there is a diagnosis, she suggests ways parents can de-escalate explosive situations. For instance, if a trigger for an explosive child is a parents’ anger at missing curfew, Smith says parents might think about letting go of that power struggle for the moment. “Perhaps that’s not going to be a teachable moment. “As adults in these situations, sometimes we have to let agenda items fall by the wayside.”

At the same time, parents will have to steel themselves for the stigma that invariably looms. Parents often report losing the support of friendships after a child is diagnosed.

“As soon as you say my child has a mental illness, there is an instinctive reaction from people: What are you doing wrong? As a parent, what pieces have you missed?” says Cannon.

Judgments can even come from those in the medical community. “You land in the ER because your daughter’s been racing down the middle of the street in a grandiose, mania state and someone there says, ‘Why don’t you manage her better?’” says Alli.

Parents like Alli, however, do say they’d take on a full load of guilt in the statistically rare event that their child did harm someone. “If she goes and hurts somebody else, I would feel responsible for that because I’m not getting her the proper care.”

But even earnest calls for improved mental-health awareness can have unintended, paradoxical consequences, parents say. If better care is proposed as a way to prevent future Adam Lanzas, any child with mental illness might look like a ticking time bomb.

“My daughter has bipolar. She should not be feared,” says Cannon, who says her daughter, now 16, is doing well and thriving in school. “She handles this with a grace and dignity that should be revered.”

For Alli, all of these challenges pale next to her primary concern: finding a placement for her complex little girl. “I wait. And I hope that nothing terrible happens in the meantime.

“Here’s the thing: I could care less if she killed me. What I’m concerned about is what that would do to her. She would never survive. We don’t care about ourselves. We care about our children.”

A psychiatric primer

Some of the types of mental illness that may occur in young people:

Bipolar disorder: A serious illness characterized by periods of mania and depression.

Severe mood dysregulation: The term is used to describe children who display symptoms characteristic of mania, but who don’t fit other elements of bipolar disorder. Many experts want severe mood dysregulation to be

recognized as its own disease.

Oppositional defiant disorder: Seen in young people, it’s characterized by frequent, consistent hostility and unco-operative behaviour that is severe enough to affect aspects of their life.

Intermittent explosive disorder: Diagnosis typically occurs in late teens or early 20s, and is characterized by periods of impulsive, aggressive and violent behaviour or extreme overreactions to situations.

Conduct disorder: A serious mental illness diagnosed in children or adolescents who demonstrate consistent aggressive and antisocial behaviour. Symptoms include aggression toward people and animals, bullying, destroying others’ property, running away from home.

Schizophrenia: A severe mental illness that involves a disturbance in the brain’s ability to function. Symptoms include hallucinations, delusions, disorganized thoughts, loss of interest in others and reduction in physical activity. Onset typically occurs in late teens or early 20s for men, while women typically experience onset a few years later.

 

Follow on Twitter: @traleepearce

 

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