Morning Zen Guest Blog Post ~ Lisa Lambert ~

When my son was nine, ten and then eleven, we lived at high alert. He talked about how he wanted to die almost every day and many days, he hurt himself. He had meltdowns several times a week that lasted 30 or 45 minutes, sometimes more than an hour. His behavior was bizarre at times, at other times he was profoundly sad. Once, he ran away from school at recess (some classmates joked that whoever ran the slowest would have to stay after school and he couldn’t tell if that was true and panicked). I got a terrifying call saying the police were searching a nearby pond, fearful he had tried to drown himself.

At ages 7 and 8 he had been hospitalized (several times) and that didn’t seem to be the answer. His doctor said regularly, “He could be admitted right now, you know.” But we didn’t do that. He had weekly therapy, medication trials, special education and more.  He also had a mom who never gave up. Somehow we wove a safety net and got through it day by day.

Everyone understood how serious his mental health problems were, but I had no vocabulary to describe how acute they were. His psychiatrist and I created a chart to measure his outbursts, his self-harm, his bizarre thinking and his fears and anxiety, which I faithfully filled out each day. On a scale of 1 to 10, he was often a 9 or 10 for one, two or most of these things. He had the same serious mental illness every day, but his acuity shot up and sometimes down.

Paul Gionfriddo, the CEO of Mental Health America, has started a campaign called B4Stage4. He believes that we need to use a framework  of Stages 1 to 4 as we do with other illnesses. He writes that the way we determine Stage 4 for mental illness in this country is by using the “imminent danger to self and others” standard. We wouldn’t wait until Stage 4 to treat illnesses such as cancer, heart disease or diabetes, he argues. He makes the case that we need to offer care for mental health issues early on, at Stage 1 – when early symptoms show up — or better still, focus on prevention.

Paul Giondriddo sees mental illness as having 4 stages, as chronic diseases such as cancer do. There is a progression from a less severe stage to more severe one, if the mental illness is left unidentified and untreated. I wonder, though, if this model fits as neatly for child and teen mental health issues. Children are different from adults in lots of ways. For mental health issues, they often appear to have episodes (not chronic) and can become acute, sometimes even when they are getting treatment and services. Often, what worked at age 10, doesn’t work at age 14 and you try new approaches. For some children, the illness is revealing itself symptom by symptom as the child gets older. Children can be initially diagnosed with anxiety or attention problems, then mood swings show up and the diagnosis changes.

I do think this framework of Stages 1 to 4 is intriguing. As parents, we need a vocabulary to describe how intense, how acute our child’s symptoms are. This could be the way to do it.

Sometimes parents are told that their children are considered too acute or difficult to manage for certain settings, even for some psychiatric hospital units. They might require a one-to-one staff person, someone to have their eyes on them and be ready to act. But it sounds odd to hear that phrase: too acute. Does that mean that this bipolar disorder is worse than that bipolar disorder? They are the same illness after all.

At one point state and federal programs used the term “serious emotional disturbance” to describe children and teens with significant mental health issues. It’s an awkward term at best. Sometimes I like the “serious” part of it but cringe at calling children disturbed. But that term is also used in special education (slightly different definition) and often the criteria are focused on the impact of the mental health issues on the child’s life and leaves acuity up for grabs.

Mental health issues for children and teens hurt. The youth hurts and often the family hurts too. But there are two kinds of hurt – the long term kind where the impact of the day to day care, support, advocacy takes its toll and the hurt when things zoom up and up into high intensity. We need a vocabulary to talk about them differently.

Parents know when their child’s acuity is in Stage 3 or 4. The burden of care becomes enormous and at times, unmanageable and overwhelming. Parents know the difference between the adjustment to your child’s new normal, the recognition that certain behaviors are part of the illness or trauma and out of your child’s control and then finding ways to work around that. That’s an adjustment to the illness or disorder and what it brings with it. Parents also know when new normal changes and the intensity rockets up like a NASA space launch. We just don’t have the vocabulary to distinguish between them.

Using a framework of Stages 1 to 4 could even help in our discussions with schools. Many schools, to be honest here, have become pretty unimpressed when they hear a depression or bipolar diagnosis. But what if they heard that this child with bipolar has been in Stage 3 for the last 2 months and all the medications, therapy and services haven’t really brought his acuity down to Stage 2? It could change the discussion.

When my son was nine and ten, I knew he had a serious mental health issue, even though his diagnosis hadn’t landed in one place yet. But when his acuity zoomed up, sometimes overnight, and stayed at Stage 3 and 4 for days and weeks at a time, I needed a way to talk about that too. Could this be a way to do that?

*   *   *   *   *   *    *   *   *

Lisa Lambert is the executive director of Parent/Professional Advocacy League (PPAL) and a Children’s Mental Health Network Advisory Council member. Lisa Lambert became involved in children’s mental health as an advocate for her young son in 1989 through the CASSP family network in California. After moving back to Massachusetts, she began supporting families whose children and youth had behavioral health needs. Her areas of expertise include mental health policy, systems advocacy and family-driven research. Lisa is a nationally recognized blogger on family advocacy for children’s mental health. You can read her blog posts here.