When the filters come off

June 21st, 2017

I remember the day my son came home with his back a mass of cuts, bruises and blood.  He had just come out of several weeks of sadness, anguish and plans to kill himself.  Almost overnight, the dark cloud lifted and he was happier.  Then even happier, happier still, giddy, even euphoric.  He wanted to ride his bike around the neighborhood like other kids, he said.  He was 8 at the time and I thought, why not?  He deserved this simple pleasure after weeks of inertia and despair.

Then he came home with a bloody back.  He had taken his bike to an empty lot and done bike tricks.  He was sure, he told me, that he could suspend himself midair upside down, grab onto clouds in the sky and make his body speed as fast as his very-manic mind.  Even after all the cuts, scrapes, gouges, bruises and blood, he still believed it.

Lots of kids might think they can do superhero stunts.  That’s not what this was.  This was one of those times when the cautionary voice in his head had vanished.  His sense of self-preservation had dimmed.  His ability to contrast his abilities with his reality was flickering.  Those things provide a filter, a kind of mental pause. The filter had failed both of us.

Although it was one of the first times I saw the filters come off, it wasn’t the last.  They came off in his language where he raged, swore, was cruel and obscene in ways that shocked us all.  They came off in risky behaviors like that day on his bike or another day when he tried to walk into downtown Boston traffic because “nothing can harm me.” They came off when he was depressed and hurt himself repeatedly and nothing would deter him. They vanished when his emotions became a landslide that buried any deterring thought or feeling.

His doctors labeled this “disinhibited behavior,” especially when it was accompanied by other manic symptoms. In psychology, disinhibition is a lack of restraint manifested in disregard for social conventions, impulsivity, and poor risk assessment.   He was 8 the first time I heard this term and I said, “He’s what?” and asked the doctor to spell it.  Even when I knew what it was called, I wondered what to do about it.  But I also saw the same lack of restraint when he was depressed or hurting himself.  It just wasn’t labeled disinhibition then.

As parents, we try to counter many of our children’s impulses.  We teach them to wait for the light to change before crossing the street or to think before saying everything that crosses their mind.  Some of it is to keep them safe, some to get along with others and to give them a voice inside their mind, a point of view, to counter those feelings and thoughts.  Sometimes it’s just to create an instant of consideration, like pushing a pause button.  When my son had milder moods or his thinking was just a little off track, this worked.  He’d say, “ I didn’t do that because I knew you’d be disappointed.”  But when his moods rushed in like a hurricane and his thoughts were like a jumbled avalanche, all bets were off.  So were the filters.

I watched the Netflix series 13 Reasons Why last weekend.  (Spoiler alert!) In case you haven’t seen it yet (though it seems like many interested in mental health issues have and also have strong opinions), the show focuses on a high school student, Clay Jensen, and the girl he really likes, Hannah Baker, who committed suicide.  Hannah has recorded a box of 13 cassette tapes before her death which detail the 13 reasons she ended her life.  As Clay listens to the tapes, Hannah recounts a series of really awful things that happened to her including betrayals, destructive gossip, sexting and rape.  We watch how each event pummels Hannah a little more.

As I watched, I thought about how everything that was supposed to protect Hannah failed her, even her filters.  Especially her filters.  They were battered by the awful things that happened to her and eroded by her own pain.  They took enormous hits from the outside and from the inside.

Parents try to create that little voice or that pause button inside their children again and again.  Overall, I think we do a pretty good job.  We hope it’s enough. We don’t know what’s going to come at them in life, what they will have to go through.  We hope we’ve made that little voice strong and indestructible. But there are emotional disorders like depression and manic moods and jumbled thoughts which diminish those inhibitors.  There are experiences like bullying and trauma that muffle them.  You don’t know which is stronger until that moment in time comes along.

It’s easier to see the filters come off when your child has risky behavior or swears colorfully at all the wrong people or behaves in a shocking or bizarre way.  But parents know it can happen with depression or severe anxiety or trauma as well.  We see our child lose touch with the thoughts  that help inhibit or lessen suicidal thoughts, self- harm and emotional pain – that say life is worth living, that they are worth loving and they will feel good again.  During those times my son used to say, “But I can’t feel that, I don’t believe that.” I’d look at him with tears and say, “But I do.”  And I’d hope it would be enough.

 

 

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Random thoughts from a loud black woman

June 4th, 2017

It seems that it’s always a white person who is asking me about my views on race, racism, culture and disparity.  Today that question was posed to me by a black person and although I gave my usual answer, “my culture is my community”, today for the first time in a very long time,  I am giving some real thought to how race(ism) affects the work that I do in my community (my culture)

Although my standard answer is truth and what I believe, I had to think about where this response is coming from.  Not answering for every black woman or person of color has something to do with it. I personally have experienced racism and disparity in health care. It was very difficult for me and my family to accept and yes, I did do something about it. But when I talk about my personal experience, how does this help others? Am I only sharing my experience because it happened to me or am I sharing because it helps others? Did my reaction to my own situation help others? Of course I’ve thought if this happened to me, imagine how many others it’s happened to and what did they do about it?

Another reason I may be hesitant to speak loudly on this issue is because when working with so many disadvantaged  families over the years,  I fear I have become so accustomed to the disparity that all families of children with mental health issues face (distressed children= beached whale) that I have become desensitized to  my own ethnic group.

I’ve also experienced racism in other areas of my life, for example at the store and on the job.  But is this different from health care disparity? Do I have a problem talking about racism I’ve encountered in these environments? When I talk about these incidents, do I speak for myself or for a group of people?

I think the response lies in the role I am in when the question is asked. I have become mindful of not speaking for a whole group, the difference between being an ally or an advocate. Today I was reminded of the power of support. I am not the only black woman or parent of color who has experienced racism or disparity in health care. It is okay to speak on behalf of others who have experienced the same.  I spend a lot of my time teaching parents how to advocate for themselves and subconsciously, I believe I do spend more time teaching parents of color not only how to advocate for themselves, but what it means to be an ally.

So bottom line is this:  Yes, racism and a lack of cultural competency does impact families of color when it comes to accessing mental health services. Black families are not treated with the same respect, our expertise as parents is not valued; we are often treated as hostile vs passionate and negative assumptions are made about our social-economic status and level of education. These statements I have just made are based on fact; personal experience and relayed to me by other African American families in my community. True, many families face these same adversaries’, but for black families it is different because it is not personal, it is prejudice.

What do we do about it?  Training in cultural competency is one thing, but to be culturally comfortable is a life style.  Providers need to be comfortable in any environment. They need to be comfortable speaking to, with and among families of color the same as they would with their peers. Let’s not make excuses such as “I don’t see color” but rather acknowledge differences and respect those differences. Instead of being insulted by my language or lack of, learn what the words I speak mean, just like I learned yours.  Don’t assume my mannerisms are ignorant, accept that they are mine. Don’t dismiss my knowledge; my education may not be as rich as yours but I am educated.

Dalene Basden has been a PAL Family Support Specialist in Lynn since 1998.  She is the parent of two boys, both of whom have mental health challenges. Affectionately called Noni by many in her community, she prides herself for being known  as that loud Black woman. 

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Unlock that door

May 22nd, 2017

My dad’s face got that look when all the locks clicked.  You know, that l-sure-didn’t-expect-this look.

We were there to see my then-12 year old son.  It was his 5th or 6th hospitalization so I had stopped noticing all the locks that had to be unlocked, then re-locked to let visitors in.  I was thinking about what to say, what I’d brought and had my fingers crossed that it would be a good visit.  When I saw my dad’s face, I knew I should have mentioned the locks.

It was the first time he’d visited an inpatient psychiatric unit.  I had gone each time my son was hospitalized, of course, and during the first two or three hospitalizations, my younger son had come along once or twice.  But now he was old enough to refuse and he dug in his heels. My mother had come before too, but this time she was under the weather and stayed home.  So, my dad volunteered.

In this state, there are only two ways that children get locked up.  Either they commit a crime or a doctor determines that they are a danger to themselves or someone else and need to be in an inpatient psychiatric setting.  Only those two settings are locked.

I got used to the routine of entering a psychiatric unit and leaving one.  Waiting for staff to deal with the locks, knowing they never let more than a few people inside at a time.  Once, when they were extra careful, I heard that a young teen had just run out of the unit when a large group was coming in for a visit.  She timed things right and made a run for it.  They were very careful after that.

It’s not easy for a child or teen to be admitted to an inpatient bed.  They have to meet the criteria of being a danger to themselves or a danger to someone else, your insurer has to agree and there has to be an available bed.  Young children, the same ages my son was during his first few hospitalizations, might hurt themselves (or try to) as well as act aggressively toward their parents or siblings.  Some teens, as they get older, may do more of one than the other.  The really terrifying part of it for a parent is that your child can have a nonstop focus on suicide or aggression that is so extreme or unrelenting that you feel you’ve tried everything and everything has failed.  You’ve failed.

It’s a big step to take a child’s liberty away.  They enter a structured, locked and contained setting in the hopes that treatment there will work.  Distractions are stripped away.  Your visits with your own child are limited.  You have to take it on faith that the treatment and setting are a good match for your child’s desperate needs.  Not all hospitals are the same, far from it.

Sometimes it’s the only way to keep a child safe.  Mothers have told me they’ve slept in front of their child’s bedroom door to make sure she doesn’t hurt herself during the night.  Fathers have told me they’ve kept their son in a separate part of the house, away from his siblings, till his aggression runs its course.  You can only do that for a short while or for a limited number of times.

But once a child or teen is in an inpatient bed, we are a lot more loosey goosey about the other end of their stay.  Some stays are short, maybe as short as three days.  Others are longer.  Pretty often, not a lot of attention is paid to discharge, to going home and back to school, until it’s staring you in the face. Those doors will unlock and your child will go home with you.

Sometimes children aren’t discharged until Monday even though they are ready to go home on Friday night or Saturday morning.  Some hospitals say they don’t discharge on the weekend while others say that if a child needs therapy, no one is open on Saturday or Sunday.  (Don’t they know it takes weeks – if you’re lucky – to get an appointment even if it’s urgent?) It really bothers me that we take that child’s liberty away for two more days, when they might be ready to be at home.  Lots of parents would also prefer discharge be on a non-work day and having two days before the pressure of school makes an impact can be a blessing.

Many kids are released without a decent plan.  They are released with a piece of paper, a prescription and few instructions.  Sometimes the prescription is for a medication that requires an insurance okay (also known as prior authorization), which is an additional obstacle.  Parents aren’t sure what to say to the school or what adequate aftercare should look like.  Pediatricians are often not kept in the loop and they are the medical professionals parents are used to relying on.  With a sketchy plan or none at all, you feel like you’re on your own.

There are memories that stay with you, good ones and awful ones.  Some are visual memories, like a beautiful beach on vacation or angry look from a teacher.  Some are scent memories like a turkey roasting at Thanksgiving or your mother’s perfume. They have the ability to take you back to a moment in your past.  The sound of the locks clicking shut on that hospital door is one of those for me.  When my dad gave me that we’re-not-in-Kansas-anymore look, I thought about how we throw our child’s safety, their liberty and our hopes and dreams for them all into the pot.  Then we make the best decision we can.

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Phone calls, phantom panels and advocacy

May 7th, 2017

The sign on the door said “closed” but did not explain. Further investigation revealed three clinics under the same management were closed by the court at a bankruptcy hearing. As any parent of a child with mental health problems knows, finding a child psychiatrist or clinical nurse is not an easy task. The need for a new therapist as well makes the task even more daunting.  

Cheryl started exactly where she was supposed to start, with a call to their insurance company. “Let us do a search” said the representative. Unfortunately the names they gave her were dead ends due to the doctor not accepting new patients, no longer working there, etc. So when she called the insurance company back with that information they said again “Let us do a search.” This process was repeated more times than Cheryl could count. With each search the options would be further away from her home.  She told the customer service representative “As long as I don’t have to hop a plane, I’m fine.” Still no luck. The insurance company’s list of providers seemed to be what is sometimes referred to as a “phantom panel,” names on a list that are not connected to an actual, available doctor or provider.

Six months after the clinic closed, Cheryl’s son still did not have services and his pediatrician said she was no longer comfortable prescribing his medications. The insurance company was not budging in expanding their panel because they said their panel was big enough. What had become an exercise in futility was fast becoming an emergency.

Cheryl reached out to me for support and guidance. First, I referred Cheryl to the local Family Resource Center. I knew they had the ability to do an expedited referral to an area clinic that was not in her network. Then one morning, coffee in hand, we sat at her kitchen table and called her insurance company. When they told Cheryl they would do another search, I got on the phone. I explained who I was and that Cheryl’s son needed an out of network provider approved. We explained that this had been going on for six months, that Cheryl had done her due diligence by calling all the names provided to her and that no one was available. I was able to explain the larger context:- that three clinics had closed leaving lots of people without services and a limited pool of potential providers more stressed than before. I also explained this child was a DMH client with serious mental health concerns and numerous hospitalizations. That he had not had a hospitalization in a couple of years probably at least in part due to the careful combination of services that he had been receiving. Further, that he had recently been showing signs of decline.

I then said receiving comprehensive mental health treatment was in fact medically necessary and that it was obvious that their in-network panel was not sufficient, at least not in this area at this time. I requested an out of network level of benefits be authorized. The representative was very receptive and took the necessary steps that resulted in a “single case agreement” being approved.

Parents often comment about how hard it can be to navigate through this confusing system. So often they say “I feel bad for people who don’t have the support.”  Cheryl says “I just kept asking for help but– I didn’t know all the right words to use.” This was coming from a parent who is a great advocate for her child. During the previous 6 months she talked to DMH, called doctors who were not on the list, tracked down the old doctor for advice and even talked to the newspapers, still she needed support.

Cheryl called me recently and gave me some news. The psychiatrist her son has been seeing now for over a year is leaving the clinic and they have not been able to find a replacement. They are recommending she start looking elsewhere. After telling me and the DMH worker she started where she knew she had to start, the insurance company. Once again she made that call.  “Let us do a search,” said the representative.

Nancy Collier is a Family Support Specialist in the Lowell Area. She was involved in advocating for mental health parity legislation in Massachusetts.

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Everyone needs a posse of parent warriors

April 23rd, 2017

Somehow, you can never escape the influence of your mother.  Yet, sometimes you don’t see it for a long while, especially if it shows up in a different context.  Often, in fact, both the influencing and not-seeing can be a very good thing.

My mother believed in the solace and wisdom of other women, especially other mothers.  She grew up in a generation where woman shared secrets-that-weren’t-secrets only with each other, like whether you colored or permed your hair.  Women always went to the ladies room in twos or more in public places and spoke in low voices about “women’s problems.”  She had a group of women friends, kind of a posse, who knew each other for a long time.  Among this group, if there were child-rearing, marital, drinking, health or other issues, those too were shared and kept quiet about.  Besides this group, her sisters were her most precious resource, keeping family connections and, sometimes family secrets, intact.

Although I thought it was silly and even wrong, this secret keeping cast its shadow for a long while.  I was uncomfortable talking about things that were personal, claiming that respect for privacy was the only thing that motivated me.  Once, I came down to breakfast in my college dorm, to find two friends arguing hotly about the merits of Clairol versus L’Oreal hair color.  I put down my food and was quiet for a while, not joining in, not knowing why.

But I believed in the importance of a posse, a group that you could trust and seek out for their knowledge and comfort.  I believed in the value of other mothers.

Then my older son got sick.  He was only in first grade when we emotionally fell off a cliff.  He went from being an anxious child to one who was hurting himself in a few short months.  There was no mistaking that we were the family dealing with significant mental health issues.  Some of my friends drifted away, others stayed but were bewildered.  Still others offered help, advice, a listening ear and most of all the knowledge that whatever I shared, our privacy would be respected.  I found I needed that, because it gave me some space to try and understand how my life was changing and search for a new equilibrium.  It wasn’t secret keeping exactly, but my close friends closed ranks and I felt a little safer, more protected.

I needed that feeling of safety, trust and comfort the first couple of years of my son’s illness.  Like many parents whose children have mental health issues, my life often felt like it was in freefall.  If we planned an outing, it was tentative, making sure my son was okay minutes before we left, so that he could manage without being overwhelmed.  If not, we changed our plans. Heck, if I planned a meal, I never quite knew if we could make it through the entire thing or if there would be a meltdown.  Uncertainty became my daily companion.  Sometimes there were good stretches but there were lots of time when the school would call, his meds would suddenly stop working or he’d develop new fears, obsessions or even frightening behaviors.  I alternated between changing my battle plan to throwing my hands up in surrender.  There were few spaces where I felt like someone had my back.

Then one day came when I started talking about my son’s struggles as well as my own experiences complete with triumphs and disasters.  First I talked at a support group I attended and later in a support group I ran.  Other parents commiserated, cheered me on and never judged.  We would often continue our conversations in the parking lot, treasuring the sharing.  One mom, Theresa, had a son with a mood disorder, who was also using substances.  He was unpredictable and sometimes stole cash from her wallet.  She’d been widowed a few years before, about the same time her son began showing symptoms of bipolar disorder.  Her family thought she’d indulged him too much after losing his dad and that she should have thrown off her own grief earlier.  Theresa would come into the group and pour out her heart and her shoulders would relax, her face would open up and she’d feel the power of the posse. Dave, whose son had ADHD and was going through a difficult divorce, would come week after week, not saying much, but listening hard, nodding often and brought little bakery gifts.  It was his posse, too.

Motivational speaker Jim Rohn says, “You are the average of the five people you spend the most time with.”  Sometimes that’s family, but often it’s your group of friends. Your posse can have a big influence on how you feel, what you think and even what steps you take.  The people in it can support you and believe in you, but they can also shake their heads at you and nudge you in a different direction.  It’s not a rubber stamp, letting you off the hook.

Today my posse is filled with parent warriors.  They are advocates and influencers, passionate and strong.  They give me support, challenge me and believe that we can make a difference in children’s mental health for our families and lots of others.  I believe in them, too, and am sure they are right.

My son is an adult now, still dealing (mostly successfully) with his mental health symptoms and he’s doing okay.  But that wouldn’t be true without years of advocacy on my part and the part of others.  I wouldn’t have been able to push, to share my stories publicly and keep going without my posse of parent warriors.  Nobody does this alone.  My mom was right about that.

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