Tag Archives: expertise

Alternative facts, fake truths and mental health: are you kidding me?

September 24th, 2018

When my son was 8 years old, his psychiatrist taught me to say, “My eyes don’t see that, honey.”   I said it when he confused his imagination and reality.  I said it when he wasn’t sure what was real.  I said it when he needed to know what was rock solid actuality and what was not.

His uncertainty about what was real had begun when he was in preschool.  Some days I would pick him up and he’d ask me to sing a song we had learned together in preschool class.  I’d say, “I wasn’t there, remember?”  He’d think for a minute, and sometimes he’d agree.  But not always.  It was cute but also a little worrisome in its frequency and his intensity about it.  It didn’t go away as he got older.  It simply changed into different forms.

He would insist that he personally knew characters in cartoons or on television.  He was quite sure he had lived events he’d only heard about.  Then came the day when the numbers on his math paper turned into piranhas swimming on the page.  It terrified him so much, he couldn’t touch the desk. He was eight.

He was a little boy with a big, scary mental health problem.  Sometimes the doctors said it was psychosis, sometimes they said it was mania.  Some even said he had a vivid imagination, but they stopped saying that after a few months.

He needed the people he trusted to say that, “No, there is no monster with one eye looking at us. That must be your eyes seeing things I don’t see.”  He needed people he loved to say, “That villain in the movie did not appear in the living room.”  Instead, I said that the villain was not allowed to leave the movie screen. He needed certainty and unshakable facts.  Without them, his fear and anxiety paralyzed or incapacitated him.

I never knew when a fact had to be verified for him and verified in the exact same way.  But I got good at it, keeping it simple with no embellishments.  I got good at telling him that the truth was the truth just as moms everywhere do.  Except we weren’t talking about little white lies that a child might tell, we were talking about something far more important.  He needed my certainty to become his so he could trust his world that day.  We all got on the same page on this, his teachers, his therapist, his doctor and his family. Without that, his anxiety zoomed to the stratosphere.

Not long ago, I saw someone I know on a national television show.  She has a brother with schizophrenia and yet she talked about alternative facts as if they were a thing.  A real live, acceptable, incontrovertible thing.  I looked at the television screen dumbfounded.  Yet, it’s easy to let terms like “alternative facts” or “fake” or “fake news” slip by us with an eye roll or shake of the head.  Or let them weasel their way into our vocabulary, like the person I saw on television.

Parents of children with emotional and mental health issues live with uncertainty and ambiguity every day.  We don’t know when our child opens his eyes in the morning how the day will go.  We don’t know if this service will actually work or that treatment will make a real difference.  We chafe against this kind of uncertainty but we learn to accept it (mostly) as part of our everyday life.

But we need all the knowledge, statistics and facts we can get. We hang on to them as we build our new normal.  We learn to discern true expertise and, when we find it, we are thrilled by it.  We might not always agree with it, but we respect it and are glad it’s there.  We don’t heap scorn or contempt on it as if it’s ‘only’ someone’s opinion, say about climate change or the value of a work of art.  We know that expertise is a close cousin to facts, yet not quite the same since it has the expert’s perspective woven into it.  That’s okay since we have our point of view too.

I’ve always been a huge believer in telling the truth even when it’s hard, inconvenient or unpopular. After my son began having problems I realized his mental health and his ability to trust depended mightily on it.  I also came to understand that my expertise was built on a combination of hard won knowledge and experience. There is a lot of value in both my expertise and the experts we rely on to provide care.

Truth is not negotiable for me or my son.  It shouldn’t be negotiable for any of us.  There isn’t any alternative.

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Where have all the experts gone?

May 18th, 2015

expertHave you ever wondered where all the expertise in children’s mental health is hiding? The experts are probably out there but they seem harder and harder to find. For parents whose child with mental health needs is “complicated” or “serious” or even both, expertise is critical to good care. There are far too many families reporting that while they’ve had care for their child, that child’s symptoms have not improved nearly enough.

When my son was nine, he had a still-learning psychiatrist, Dr. G, working with him. Fortunately, Dr. G was supervised and mentored by someone extremely experienced and knowledgeable. My son hid, terrified of unspecified things, under the chairs in the waiting room and became manic and rather wild at other times, even rampaging through Dr. G’s office one day. Appointments were never the same twice. When Dr. G left to go to a different position, he said, “Thank you for the opportunity to work with your son. I’ve never met anyone like him before.” While that was somewhat unsettling to hear, I’ve always hoped that he could help the next child and family that much better.

When we saw Dr. G, I expected that he would observe certain behaviors and say, Aha! I know what that means. I thought he would see my son’s fear, mania and depression and have effective, wise advice. But he was learning right beside me. What made the difference was that he had close access to a very experienced clinician, who had helped complicated, serious children before. While there was a measure of trial and error, we had the benefit of someone else’s expertise.

This isn’t always the case for many families.

There is a real mental health workforce shortage here in Massachusetts as well as nationwide. In an Annapolis Coalition report authors note that there is a critical shortage of individuals trained to meet the needs of children, youth and their families. As one example, the federal government has projected the need for 12,624 child and adolescent psychiatrists by 2020 while the projected supply is 8,312. In addition, there is a growing lack of racial and ethnic diversity in the workforce.

The number of therapists is declining while the need grows. We are identifying more children through screening and a focus on early childhood mental health that need mental health care. But these numbers only focus on access. What about expertise?

In April 2015, the Congressional Research Services issued a report on the mental health workforce. “The quality of mental health care, they wrote, is influenced by the skills of the people providing the care, while access relies on, among other things, the number of skilled providers available.”

Expertise matters. Many families search for a therapist, clinician, psychiatrist or program for weeks. They then find that the wait to get in is often even longer. When they get that first appointment or walk through that door, they are looking for someone who recognizes their child’s symptoms or behaviors and can say, I’ve seen children like this before. Or if they haven’t, they have a colleague to consult.

When my son was a little older, he was in a therapeutic school where there were clinicians on staff. They took one look at his mental health record and wisely matched him with a very experienced psychologist. She was patient, smart and skillful. She understood how to help both his teacher and me create an external structure (routine, limits and predictability) when his internal self was in chaos. She never ran out of strategies and used whatever resources were at hand. She explained to me that medication was to help him become more available for therapy and therapy was to help him manage his illness. She had seen children quite like him before.

Many families hold child psychiatrists in high regard, believing them to be the best trained and most knowledgeable. But their appointments are limited by insurers to short increments of time and are usually focused on medication management not detailed observation or strategy sessions. They are also in short supply. As a result, psychiatric nurses often prescribe and see children who need medication. There are psychologists, social workers and bachelor level therapists out there as well. But families report that many are early career, just starting out. Does a lot of time and less experience work? Or does greater expertise but short appointments work better for children, teens and their families?

When my son was nine and I moved back to Massachusetts, I made 16 calls before I found someone who was willing to see a complicated, serious, hard-to-treat child. I found someone by calling hospitals and other institutions because they knew where the expertise was within their walls, although they didn’t know what was in my community. That first person I found led to the second and then a third, who was Dr. G. I had to track down someone like a bloodhound follows a trail. I don’t think it’s easier finding expertise today but I’m willing to be proven wrong.

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