Tag Archives: parenting

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  Our young people are provided with a version of “normal” that’s often based on outdated data.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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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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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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Her story changed everything

March 27th, 2017

I first met Linette because of her urgent phone call.  While waiting with her daughter for a psychiatric bed, caring for her other child and staying in touch with her office, she was calling, emailing and messaging anyone she thought could help.  Most didn’t get back to her.  I did.

Her young daughter was waiting for an available bed and had been waiting for more than a week.  We talked a bunch of times.  We made calls and sent emails.  We strategized about people to speak to, steps to take and stones to turn over.  Then Linette kicked it up a notch.  She went to the state house and talked to legislators.  She called state agency heads. She told her story again and again, insisting people listen.  They did and, after 3 anguishing weeks, her daughter finally got into a psychiatric bed and later into another program.

Linette and I both breathed a sigh of relief.  I think we both knew, however, that there would be more moments of crisis and an ongoing need for advocacy in her daughter’s future. This is what happens when a mom tries to get her child’s intensive needs addressed by a wobbly, deficient system.

Linette learned that one of the best tools she had was her story.

Today we have a nice, succinct term for Linette’s experience.  We call it “boarding” which is defined as waiting in emergency rooms and other areas for an inpatient bed. But just because we have a simple, snappy term doesn’t change the experience.  It doesn’t capture it either.  It’s a heartbreaking, exhausting and discouraging thing to go through and it happens to families across the country almost every day.  It can change a parent.  It can certainly change how you view the system that’s supposed to help your child.

Over the next couple of years, Linette and her daughter went through enough obstacles, barriers and bumps in the road to make it abundantly clear that, while there might be well-meaning people in it, the child serving system wasn’t helpful or benevolent.  She battled for funding, for eligibility, for services and for slots in programs.  Linette learned the jargon and became an even savvier strategist.  She told her story again and again.  That and her advocacy changed things for her daughter.

She found other parents online and in person.  Some had hard-won wisdom to pass on; others needed to learn skills and knowledge from her.  She encouraged them to tell their stories, too, not just to help their own children but to repair and remake a set of services and treatments earmarked for kids but often inaccessible and sometimes downright unfriendly to families.

Linette never said “no” when asked to tell her story.  She has told her story to national magazines, and on national television news.  She can talk about the financial hits that families take when their child has mental health needs because that’s happened to her.  She can talk about the stigma parents experience because she’s had it happen to her, too.  She can talk about the advocacy, the persistence and the smarts it takes to get your child treatment, because she knows it’s a fact.  She can also tell you that the heartbreak never completely goes away, because it doesn’t.

Last week, Congressman Joe Kennedy told Linette’s story to Congress.  He said that families like hers needed more than “the cheap luck of a broken system.”  Linette had walked into his office not long ago and told her story.  This time it was not to get her daughter a needed service, this time it was to change things for families like her.  She keeps telling it, hoping it won’t be representative of lots of family stories in the near future or any future.  She’s waiting for that day.

Telling your story changes you.  You begin from a place of pain and disbelief.  You become determined.  You become strong, you become unrelenting, you become strategic.  You fight for the personal – treatment for your child and access to services for your family.  Your story is rooted in what you want to say.

Along the way, you meet others doing the same thing for their child and their family.  You realize the fight is bigger than you.  You realize that others are your comrades and fellow warriors.  The intent of your story changes too.  Now you are focused on how your story can change things.  Now you are focused on what you want others to hear.  You want them to be galvanized and a warrior too.

Linette’s story has changed a lot of minds.  Some of them are decision makers, like state legislators and Congressmen. Some of them are the people who work with her daughter and her family.  Many she will never know.  But they’ve read part of her story in an interview or saw it on a news story.  Or they watched the video last week that helped keep health care in place for children like her daughter.  She’s a difference maker and we need more of them, Lots more of them.

 

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3 things I’ve learned about fake news from mental health advocacy

February 20th, 2017

I was plunged into the mental health world when my son was 7 and made his first suicide attempt.  I got him help, of course, but I needed to understand what was happening to him and to our family.  Overnight, I became a mental health researcher and devoured any and all stories I could find about mental illness.  I depended on the integrity and truthfulness of good reporting.  I also developed a pretty good hogwash detector.

I’ve discovered lately that I need all those skills and more.

Stories and accusations about fake news crop up everywhere you look.  According to the Mirriam-Webster dictionary, the word “fake” is in the top 30% of words looked up and means not true or real.  When it’s applied to a news story or new information, it’s intended to disparage the reporter, the sources or the content.   I can tell you from personal experience, however, that just because the truth or information is hard to handle, doesn’t mean it’s fake.

Fake news and information rely on the vulnerability of the person hearing or reading it to gain traction.  Believe me, I’ve been there.  When my young son would have a meltdown and then weep afterward that he was bad, I wanted to believe it was temporary, didn’t need serious treatment or was just a phase.  Sure, he was out of control.  Yes, he sometimes hurt himself.  But he felt remorse, so didn’t that count for something?  When therapists and teachers told me not to worry, part of me wanted to stop looking for the tough answers.  I was tired and overwhelmed.   I didn’t want to hear anything that was hard to handle.

Media outlets, whether they are mainstream, lean to the right or left, often report stories differently.  They don’t agree on the focus.  Just like the media, different parts of the children’s mental health system never seem to agree.  One professional will offer a different prognosis for your child than the next one.  Another one will come up with a completely new diagnosis, when you’ve already got three. Like many parents, I heard wildly different recommendations from the psychiatrist, the teacher and the therapist.  The psychiatrist (who turned out to be right) thought my son had a pretty serious mood disorder.  The teacher thought my divorce, our move and change of schools were to blame.  The therapist didn’t want me to be alarmed since children often grow out of their problems.  They couldn’t be all right, could they?

I had to learn to listen with both my head and my heart.  I needed to face the difficult facts and also feel the compassion being offered to me.  I learned that people have different training and biases and are often blind to the fact that they could be misleading you. Sometimes it’s not intentional.  Sometimes it feels like it is.

My son had four different psychiatrists before he turned 12.  One, Dr. G, was especially charming and very confident of his viewpoint and recommendations.  During one visit, he looked me in the eye and spoke charismatically and sincerely.  He said he wanted to retry a medication that had been a disaster a year ago.  He said, “We both want what’s best for your son and this is absolutely the right move.  As soon as we get up to the right dosage, he is going to be a different child.  You’ll be amazed. Just trust me.”

I am a pretty good critical thinker and know how to wade through information.  But I didn’t listen to myself.  Instead, I did trust him and that medication was a disaster once again.  My son ended up in psychiatric crisis.

Dr. G was likeable, charming and smart.  He was confident that he was a good doctor and overall I think he was.  But I had a very complicated son, whose medication reactions were unusual and extreme.  What Dr. G told me – that my son was going to do well and be a different child – was wrong.   I trusted his information because he was the one saying it, not because it was true.  I relied on how much I liked Dr. G.  I confused the speaker with the speech and forgot I was an expert too. After that, my hogwash detector got louder and less forgiving.

Between my hogwash detector, wisdom gained from advocating for my own child and later, other families, I’ve learned some key points.  Those things are turning out to be pretty useful when confronted by fake news.

  1. Don’t confuse how you feel about the source with the story being told. Just like Dr. G, many people are wonderfully persuasive and you want to believe them.  I’ve had several friends tell me news items that I half believed because I liked them, later checking the items out and seeing they weren’t real after all.  We all know who has rigorously checked something out and who isn’t so careful.  How you feel about someone cannot substitute for carefully vetting the information.
  2. Watch out if the information or news is focused on attacking someone. Reliable sources report the facts, which are different from opinions.  I have been disparaged and disrespected as a parent more times than I can count.  Not because I was wrong but because emotions were high or bias against parents was in play.  Good information and real news is about what is happening in front of us and not about personality.  Did I mention that someone attacking me or another parent has ramped up my hogwash detector?
  3. Beware of polarizing tactics. I found out early on that different parts of the children’s mental health system often don’t agree.  There is a lot of finger pointing by schools, by hospitals, by clinics and others.  No one wants to be accountable.  When polarization is at its worst, nothing productive happens.  Children and families don’t get what they need.  It’s the same in a polarized news environment.  We agree on very little and very little gets done.

There were times when the news about my son’s illness was awful and I confess I said to myself, “I just don’t believe this.”  I wanted to believe the less troubling stuff and ignore the rest.  Sometimes I did, but mostly I learned that the truth helps me make better choices.  I learned to value integrity and good reporting.  These days, it goes far beyond the mental health world.

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