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When Diagnosis Eludes

A mother struggles a decade before her son’s severe mental illness is treated right, and covered right, by insurance.

First in a two-part series.

Imagine your child having a nuclear temper tantrum, fists clenched and swinging to the tune of “I haaaate you!” In-between rages, your youngster’s best state is irritability – every day of his life.

By age 3, the belligerent son of Anne Grady had charged her with scissors and chased her around the house, screaming, “I’m going to kill you.” His father had left when he was 2, and nearly a decade passed before she found the right treatment.

Now 11, Evan still has eruptions and was diagnosed only four years ago with attention deficit hyperactivity disorder (ADHD) and severe mood disorder. Only after it made the DSM in 2013 was it called disruptive mood dysregulation disorder and plenty remains unknown about it.

“We couldn’t get an accurate diagnosis for years – the most frustrating part – because it’s hard to treat when you don’t know what’s wrong,” said Grady, an Austin-based corporate consultant on rebooting staff morale and productivity. “We did allergy testing, acupressure, chiropractic, hired nutritionists, play therapy, early childhood intervention services, occupational therapy, social skills therapy, etc. He was finally diagnosed in the hospital in 2010 with bipolar and ADHD, and most recently, severe mood dysregulation disorder.

“It wasn’t even a formal diagnosis until the new DSM came out,” Grady said. “He could be the poster child for the definition, but the treatment is the same as for bipolar. He’s also been diagnosed with sensory integration issues, oppositional defiant disorder, impaired executive functioning and cerebral dysrhythmia.”

But despite the complex diagnoses, uncertainties remain. One of the evocative descriptions she was given about the condition: “It’s basically like a sunburn on his brain and if it gets tapped wrong, it sets him off.”

Grady’s son is among at least 6 million American children with serious mental disorders, a number that the New York Times reported has tripled since the early 1990s. One in five children is estimated to suffer from a mental illness, Grady said, and a whopping 70 percent of juvenile convicts suffer from mental disorders, which, when left untreated, shadow them and cost all of us.

Where’s the Proof?

That Grady’s child exhausted her beyond the normal parenting was nothing compared to her fear of him and anguish that he wasn’t getting relief despite weekly doctor visits. His father struggled with his own issues and buckled under the stress, moving out when Evan was 2. She found that even well-meaning teachers and loved ones failed to believe the enormity of Evan’s condition, which worsened in privacy.

“At his daycare, they’d say, ‘Oh, Anne, you’re exaggerating, it’s just the terrible 2s, it’s just the fearful 4s,’ ” Grady recalled. “He was able to hold it together just long enough to get home.”

By the time Evan was 5, his mother met Jay Grady, and the two married in 2009. For Evan’s and the family’s safety, the boy’s uncontrollable outbursts required that they put him in what she called a “basket” hold: his arms crossed in front with hands on his shoulders as he was held closely, his legs encircled by a parent’s or caregiver’s. One of the best things Grady said she did was hire a part-time aide who comes to the house for a few hours every day to give her a break. She got help in arranging that through care.com and found classes and an “incredible support system” through NAMI, the National Alliance on Mental Illness, a nonprofit resource with deep knowledge and connections.

Impressively, Grady managed to thrive at work, doing leadership training and corporate triage for sluggish staffs. Due to her son’s needs, the short-term office visits served her need to be gone no longer than Evan could tolerate. She also connected with people, which helped her overall state – helped her to get outside of her own foibles. There are a number of chapters to her so-bad-it’s-funny stream of setbacks. The most recent batch of untimely events started this year.

Evan had been hospitalized for the first time in 2010 for a long stretch, during which his family lived at a Ronald McDonald House. (The burger chain’s charitable foundation builds hospital-adjacent lodgings for families of longer-term patients). But in February, he was hospitalized again in a residential center. She and her husband almost had it more difficult by having jobs; the care would have been covered were they unemployed.

“We have insurance with a $10,000 deductible, and we’d met it by February,” Grady said. About the same time, a facial tumor in her salivary glands “the size of a small avocado” required urgent surgery. The tumor was benign but initially left her partly paralyzed with slurred speech. She’s now 95 percent of her old self, she said, with the same levity that has seen her through it all.

“With those first groups that I spoke to after my facial surgery, I still had the partial paralysis and slurred my words. I got standing ovations,” she mused. “I think they felt bad for me.”

Fortunately, she has a parenting partner. Her business has thrived to such a degree that her husband, Jay, a former tech industry specialist, has stepped in to help run it. And Evan has received treatment that finally has improved his condition. Even with insurance coverage, the costs are extraordinary.

During her decade journey to find help for her son, Grady learned to adapt in order to manage the high-needs boy, an adolescent daughter, her home, marriage and consulting business; she figured sharing her skills might help other families in the same boat. So she penned a book, which goes beyond coping with a severely ill son and offers a broader look at managing your life. Humorously, candidly, Grady shares her own story and offers ways you can de-stress your life with 52 Strategies for Life, Love & Work. She also blogs, (a therapeutic release as well as a mood-booster) hoping to help others overcome obstacles and transform their own lives.

By Nancy Wride

There is still hope.

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