Why do we still say the same things to transition age youth?

July 18th, 2017

My then-17 year old son went to bed the night before his birthday and woke up an adult the next morning.  At least that’s what everyone told him.  Neither of us could see too many differences.  We had often played a game about birthdays while he was growing up.  Just before his 8th birthday he said, “When I’m 8, I am going to like sprinkled cheese on my spaghetti.”  And he was sure, (picky eater that he was) that he would and, so he did. Before he turned 12, he told me, “When I’m 12, I will get over my fear of roller coasters.” And he was determined and made that happen.  I’m still not sure how.

Turning 18 was different.  He couldn’t declare, “When I’m 18, I will have all the skills and knowledge to make my life happy and be able to navigate the mental health system to boot.”  Just because someone proclaimed him an adult, he didn’t actually have all the wisdom and tools he needed.  Because he had a mental illness, there was a lot to know, a lot to manage and a lot of complicated decisions to make.  Saying, “When I’m 18….” didn’t make that happen, whether he said it or a provider said it.

Yet, lots of the time the people working with young adults tell them things like, “You’re 18 now and can make that decision for yourself, “ or “You don’t have to share this information with your mom or dad.”

The Pew Research Center has a lot of data about millennials (ages 18 to 36).  36% are living at home and 59% get financial support from their parents.  Only 25% are married (compared with 30% in 2007) and 48% say their parents most influence their voting.  They account for 20% of all same sex couples in America and 74% say they appreciate the way other cultures impact the American way of life.

Kind of an interesting group, aren’t they?  This data includes all millennials, whether they have mental health issues or not.  Here is what the norms for their age group are not: to get out of the house at age 18, find a spouse, start a family and don’t listen to others.  Yet, in the mental health world, that is often the party line.  Our young people are provided with a version of “normal” that’s often based on outdated data.  Wouldn’t it be great if our starting point was what is “normal” for this generation and then individualize that?

I really like the data on how many young adults say their parents influence their voting.  My son and I have lively conversations about the ballot questions each election. They’ve ranged from charter schools, to humane treatment for animals to “death with dignity.” This last election he had strong opinions on marijuana legalization, but he wanted to hear mine, too.  I don’t think I changed his voting but he got better explaining his stance the more we talked.

We live in a complicated world.  My father carried around cash most of the time and he pretty much knew where each dollar went.  It was visual and even tactile – he could see and feel it being spent.  My son’s bank account, on the other hand, got hacked recently.  Some unknown person went into his account and withdrew and withdrew until everything was gone.  He knew what to do because we’ve talked about and rehearsed this kind of thing before (did a walk through on something minor)  and he went to his bank and filled out fraud forms.  But he needed to get that knowledge before he could perform the action.  This is true for most young people.

Parents can – and usually do – take on a lot of roles.  We can be insurance advocates, emotional supporters, medical historians, the local ATM, encyclopedias, life coaches, navigators, experts on benefits and often, advice givers.  Some of us are better at some of those roles than others.  We can also tailor the information and help to our child, because we’ve been doing it for a long time.  What I don’t get is why many who  support young adults don’t automatically assume that parents have some pretty good stuff to offer.   If you find out they don’t, take it from there.  But don’t make that your starting point. Parents can have a variety of roles which is not pointed out often enough.

When my son turned 18, I asked him what roles he wanted me to play.  He hated the idea of having to call insurance for a prior authorization.  He liked the idea of being in charge of his treatment, but having me on speed dial for medical history (yes, I still have a list of all the meds he’s tried).  This was our conversation, not one with providers, though it could have been.  We made it clear for ourselves where we wanted to start and we agreed that not everyone knows everything they need to know.  And that’s okay.

It never goes smoothly.  There were times when I was bossy and times when he was determined to reject help.  There were times when we both couldn’t figure it out.  There were times when I had a hard time giving up my old roles and there were times he didn’t want to take on any new ones.

We kept figuring it out and still are.  What made it harder were the times his providers said, “You don’t have to talk to your mom” or “You need to make this decision,” without asking him if he wanted it that way and letting it be okay whatever he chose.  Young people with mental health needs become independent, but their path can be full of curves, needing comfort one day and distance the next.   It might include getting advice and support from their parents, just like the rest of their generation.  Nothing wrong with that.

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Ramblings within a month-long depressive episode

July 4th, 2017

I’ve been wondering recently what it’d feel like to work in one of those call offices for suicide hotlines. I know the pay is crap and that shouldn’t matter but you must be pretty strong to help someone after they shatter.  The thing I love though is that the people who actually call those are trying to put their life back together.

I’ve been on and off suicidal for as long as I can remember. I’ve never attempted. I smile. I laugh. I lend every helping hand I have. My depression is caused by demons of my past that I almost got away from but they’ve caught back up to my present. I look to my past and see nothing but haunted houses and ghosts. I look to my future and see a vast, empty desert with no road. I am lost and I am scared. Imagine looking to your future and seeing nothing. Nothing but a death trap. I live in a house I fear I will never escape and the worst part is…it’s not actually that bad.

I learned how to be independent at a young age. With a father who was busy working so the family could have money, a mother who was all talk and no action and an older sister who never felt or acted older. I had no choice. I don’t remember when I first started questioning who would miss me. I knew my dad would be devastated and my mom would blame herself. My sister might try to follow me as well because I’ve always set an example. My best friend would feel like she lost everything and as much as we jokingly say we want to die to each other, I think she’d be upset she didn’t take me seriously.

I got a new therapist recently. She’s nice but when we talk I discover walls I never realized I built and don’t have the strength to knock down. I haven’t figured out how to vocalize my feelings yet and it’s much easier to write this thinking no one will be reading it. But people have to read it. I want people to know that it’s a good thing I’m scared to kill myself. I’d much rather a car hit me or a shooter shoot me. Although in some sense it’d be pointless because I believe in reincarnation.

I’ve been on medication since I was 8 and it really messed with my hormones and nervous system. People have suggested I look back into them but they honestly scare me. They messed me up so bad. They messed me up because my depression was situational. My depression isn’t caused by a chemical imbalance in my brain. It’s caused by me living in a city, a state, a place I hate. The real question is, though, Where do I like?

I have spent my entire life living because other people seem to think I should. I live to stop my family and friends from crying. I live because what if I actually am supposed to marry the kpop star Choi Minho in the future, I can’t leave him alone. What about the kids I haven’t adopted? What about the cats I haven’t pet? I live for all these reasons but none of them are actually for me. If you asked me what I want to be when I grow up I’ll probably lie. My real answer would be dead…or somewhere I feel alive.

The author would like to remain anonymous, but has been a long-time member of Youth MOVE Massachusetts and offers their support to other peers who may also be struggling.

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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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