Is it Stage 1? Stage 4? Talking about acuity and mental health

number 4When 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. 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 Gionfriddo 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?

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4 thoughts on “Is it Stage 1? Stage 4? Talking about acuity and mental health

  1. This is an astonishing and potentially game-changing blog in our efforts to find words to fit our complex and changing reality. So much of what we do at NAMI Mass. and every other kindred organization, like PPAL, stresses the importance of early and effective intervention. In our son’s case the intervention did come early, but was sadly, seriously inadequate because noone put it on a continuum. we didn’t know our “stage 1” at age 5 had potential later stages, so we were not vigilant. In fact, symptoms abated, and we went on our way, oblivious to the arc of the illness, until at 27, our son experienced full-blown mania, 12 hospitalizations and a slow, ongoing recovery. Thank you, Lisa.

  2. Our experience has mirrored the ups and downs in acuity, sometimes within the same day. Having language that reflects variation within the disease would be tremendously helpful. Anxiety is a term used so loosely by almost everyone and can mean anything from being anxious to see someone you haven’t seen in years to being paralyzed with fear. That disparity in the meaning, or as you say, the acuity linked to the word makes a world of difference in the needs of the “anxious” person and subsequently the supports that would be appropriate.
    As I write this I am in the midst of generating possible language for social emotional support for an IEP. It would be so much easier write if there was a scale that could enable me to differentiate between higher and lower acuity supports. Mental health support is not a “one approach fits all of the time” en-devour and I sometimes feel that it is handled that way in schools, at least when putting pen to paper when defining accommodations, supports, and goals in and IEP.

  3. Our family also mirrors much of what has been said. The only difference being that I was able to walk my son back from the ledge each time. For years I thought I was doing what was in his best interest. But instead he lost services from the agency that provided what he needed.

    The scales could potentially be a game changer for families and schools. If we use the same language as we do with other medical issues like your example cancer. It allows family members and those working with the child at school what services need to be in place for the individual child. It provides a parent the ability to explain to other family members what stage the child might be in.
    Perhaps it will also help to reduce the stigma.

    I often hear from school staff that of course they have services available to the student in need. But realistically they don’t. Some school districts have one therapist for three schools. Yes, if they child is in crisis they can call the crisis team and dependent upon the area that may resolve the issue of those in immediate crisis. Well that of course is until
    they get to the hospital where they are boarded until a bed is found. If school
    districts buy into the scales and they use it to the student’s benefit and data is collected they could use it for additional staffing.

    Finally I would suggest that if an individual child is diagnosed with bi- polar disorder may look quite different from someone else with same illness due to genetics or other co-existing illnesses. Also how the particular medications the individual may take.

  4. Yes the stages idea works. My now 24 year old son who is bipolar type 2 is doing very well compared to where he was at his worst. He will always bipolar though so having something to distinguish that difference & reflect service needs over time would be wonderful.

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