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When the filters come off

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.

 

 

Random thoughts from a loud black woman

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.