Tag Archives: parenting

What’s in my wallet? Not much after mental health costs.

December 27th, 2016

My ex-husband and I divorced when my sons were 8 and 5 years old.  My 8 year old had already been through three psychiatric hospitalizations, was in regular therapy and routinely threatened to hurt himself as well as his brother.  Unsurprisingly, his brother was in therapy too.  I thought I was smart; as part of the divorce negotiations we set aside $15,000 to cover co-payments and other costs not covered by our very good insurance.  Naively, I thought it would last for many years.  Instead, we blew through that amount in less than 18 months.  So much for lasting.

This is the part of mental health care we don’t talk about enough:  the high cost of paying for it even when you have good insurance.  In the December 2016 issue, Money Magazine takes this topic on and points out, “A mental health challenge can strike deeply at a family’s financial well-being.”  The article goes on to point out that “patients bear 16% of the total costs of mental health treatment, the highest portion of any common illness, including high blood pressure and diabetes.”  Let’s get real here, much of the time, it’s the family taking on the costs.

Many of us have figured out how to make it paycheck to paycheck, maybe even with some extras like taking the family to the movies, or going on a vacation or buying little extras when they go on sale.  But the costs for co-pays, medications and other things not covered by insurance often make that impossible.

Like many parents whose children have mental health needs, at one point I was shouldering the co-payment for three visits per week (both sons and my own) and very high co-payments for four medications each month (because the ones that had been around long enough for there to be a generic version simply weren’t effective).  Like many children and young adults, my son was on several medications targeted to different concerns – anxiety, cycling moods, insomnia, inattention and outbursts. Each medication came with a high price.

My son also had to try medications we were sure wouldn’t work because our insurance had a policy of “failing up.”   He had to be on the cheaper, ineffective medication for two weeks to prove it was a no-go.  That’s two weeks of slowly increasing the dosage, deciding it was a bust, then weaning him off.  This might make financial sense, but it’s an awful way to zoom in on good care. I was gambling that the new medications would work – and was therefore willing to cough up the money.  I am not alone.  Just last month a parent emailed that she had been paying more than $900 per month for her son’s medications – and that was the part insurance didn’t cover.  She added that she had two other children and one was beginning to show signs of a mental health challenge.  She didn’t know where the money was going to come from.

Medicaid (MassHealth) often has better mental health coverage than commercial insurance, paying for more kinds of care and at a lower cost.  But there are still those “other costs,” the ones parents share in story after story.  One mother told me that she had bought 16 remote controls in 6 weeks.  When her son had a meltdown, she said, he threw them and damaged them. If she or her other child wanted to watch television, she had to replace them. He often threw them at lamps, so she was making do with overhead lights. Other parents report that there are holes punched in walls – it cost what to repair that?—in lots of homes.  Until my son was in middle school, he chewed through t-shirts at a rapid clip.  One fall, I bought 15 for the school year and they were all shredded by November.  It can add up to hundreds of dollars, dollars that used to go for family movie night.

Money Magazine also reports that insurance claims for mental health services are denied at a high rate.  Many families pull money out of other places to fund what insurance refuses to pay.  (Yes, they know that they can appeal, but often don’t have the extra wherewithal to take it on.)  One dad told me that his daughter was passively suicidal. He explained that, “She would deliberately walk in front of moving cars unless stopped or would lie down in the street and beg cars to run over her.”  His insurance refused to pay for a neuropsychological evaluation, which he (and the therapist) believed was needed.  “The good news, he told me, “Is that I just received a small inheritance from an aunt.”  He used that money to pay for the evaluation and later for a therapeutic school.  Unfortunately, the money ran out before she stopped needing care.

Not everyone thinks that mental health problems can be life threatening, but they often are.  When your child talks about death or not wanting to live, parents will raid that college fund, go into credit card debt and blow the family budget.  But sometimes, we try and stretch the dollars by spacing out the therapy visits, having treatment breaks or forgoing care for ourselves, even when we need it badly.  This is a stressful job, caring for a child with mental health needs, and can leave even the healthiest of us feeling depleted and enormously stressed.  The choice is between what we can afford and what we need.

What’s harder to measure is the impact on a parent’s earnings.  I worked part time for many years so I could go to countless school meetings, respond to emergencies and drive my son to therapy and other appointments.  Parents turn down promotions, switch to jobs that are more accommodating for employees with erratic home demands and learn the ins and outs of the Family and Medical Leave Act. A great many carve slices out of their work life to accommodate the demands of raising a child with mental health challenges.  Many times, things improve and parents are back on their chosen career track.  But the lost earnings have a long term impact.

There’s a growing recognition of the financial impact of raising a child with mental health challenges, often through young adulthood.  It’s not the first thing parents talk about when they tell their story, but it’s a universal experience.  The multiple co-payments, the high costs of psychotropic medications, the extra costs (like the several dozens of t-shirts I bought each year) all have their impact financially and emotionally.  We all know that someone has to pay, but can we figure out a way to make this work better?

Tags: , , , ,

Posted in Blog Posts | 1 Comment »

Outrage fatigue? Yeah, we’ve got that.

September 29th, 2016

outraged-babuDo you have outrage fatigue?  Yeah?  I think I do, too.  I’ve noticed that it feels a lot like the disbelief and exhaustion that comes with parenting a child with mental health problems.

Each day my inbox, Facebook and Twitter feeds, social media and most of all, the 24/7 news are filled with stories that are designed to outrage.  Much of the time they truly do. We have a presidential election going on that seems more like a reality show with way more than the usual sniping going on.  We hear the over the top comments, new twists on old scandals and on top of the television pundits, our friends and family are happy to post their opinions too.

Nearly every week I see (and you probably do, too) the video feed of a new shooting and many times (though not always) the police are involved.  In some cases it’s clear that racial bias plays a part in how events unfold and in other cases it’s less clear.  There are other times where the shooter may have significant mental health problems and has not received the treatment he needed.  Sometimes people with disabilities are the ones being shot. A few weeks ago, a deaf man was shot by police in North Carolina and earlier this week a woman threatening to kill herself was shot here in Massachusetts.  We are horrified and outraged and barely have time to hear the details before the next story grabs our attention.

We are not imagining it.  One study found that  “outrage discourse” was found in 100% of cable TV episodes, 98.8% of talk radio programs, and 82.8% of blog posts. On average, examples occurred once during every 90 to 100 seconds of political programming on TV and even more often on radio. Syndicated newspaper columnists used outrage discourse much less frequently than other media analyzed, but more frequently compared to columns from 1955 and 1975.

Only a few years ago, we talked about compassion fatigue.  The mood was different.  We saw abused animals in television ads.  We heard about the victims of diseases such as Ebola.  We saw the devastation caused by natural disasters and heard how it made people homeless and hungry and we were asked to take action and give.  Lots of us did.  For parents, the stories of children losing their homes and their families were particularly tough. Those heartrending stories came into our homes and social media often and while we felt sad, many of us also felt overwhelmed.

Then something shifted.  I can’t quite put my finger on when that happened but today we are told to be outraged (and much of the time we probably should be), not saddened.  We hear about the latest event, share the pictures, the stories and the comments.  We even add our own to the mix.  But the outrages come fast and furious and we barely have time to exclaim, post that emoji and comment before the next outrage appears.

Any parent of a child with mental health needs can tell you what is going to happen next.  We are going to get exhausted and overwhelmed.  We are on a constant cycle of reacting, figuring things out, moving on and starting over again. Voila!  Outrage fatigue.

When you parent a child who has multiple meltdowns and whose moods and behaviors are like a roller coaster, you shift your idea of what to react to.  You accommodate the slightly awful and save your energy for the truly terrible.  When you bang your already aching head against the wall of failed approaches, balky systems and waits that defy imagination, you learn to ignore the slightly shocking and save your determination for the jaw-dropping, I-can’t-believe-this-is happening events.

Social media, live streaming and 24/7 news lets us stay connected in ways that were not possible before now.  The good news is they can also be empowering, informing and entertaining.  But when what you hear is the same awful news or outrageous remark over and over, it loses its punch and ability to galvanize you into action.   We can’t maintain a state of intense moral outrage indefinitely.  What’s worse is that our barometer, or outrage-meter, begins to malfunction and it doesn’t register the only-somewhat-awful.  Just like ignoring that risky, over-the-top or unsafe behavior you’ve adjusted to managing at home.

Outrage should be a good thing and spur us into action.  Stories about climate change, the election, police shootings and terrorist attacks are intended to inform us but also motivate us to take action.  Sure we can give or donate, but the message encourages us to make a difference and act.  It might be to vote, sign a petition, join a protest or volunteer.  Outrage springs from a sense of basic decency and moral rightness and we know when that has been violated.  Like many uncomfortable emotions, it’s actually healthy.  We are engaged, fired up and we want to make a difference.

Children’s mental health advocacy relies on outrage.  There are children and teens waiting in emergency departments for elusive hospital beds.  One of the children who was waiting only a week or so ago was five.  We should all be outraged at that.  Waits for outpatient care can be weeks or even months and at the first appointment parents discover the clinicians are frequently new to the work.  Parenting a child with mental health needs is more like quilting, piecing together services paid for by insurers, schools, state agencies and often, out of pocket.  We have a system to try the patience of a saint, as if the child you are trying to help didn’t already stretch that patience thin.

But when we hear of 5, 10 or more outrageous things a day, it’s hard for the less outrageous to get traction.  People think they’ve already heard about stuck kids, waiting kids, struggling kids.  The quiet outrage families feel gets lost and doesn’t burn bright in others, the ones we hope will be the champions we need.

Outrage fatigue hurts us in several ways.  We begin to think outrageous events are epidemic.  They are everywhere and spreading rapidly.  We learn to look for the new ones and pay less attention to the ones we already know.  We can feel overwhelmed and tired and want to find a quiet space rather than jump in the fray to change things.  Different events and tragedies compete with one another and we try to prioritize them even though we are comparing apples, asparagus and armadillos.

While I admit to a self diagnosis of outrage fatigue, I am not saying that we should abandon telling each other about kids waiting for services or the harm stigma can do or the immense burden that families still haul around as they identify, coordinate and  (finally) access care for their children.  We need those stories.  We should feel appalled and want to change things.  That’s good because this is something we can fix in big and small ways.  Unlike a lot of other things in my inbox.

Tags: , ,

Posted in Blog Posts | 3 Comments »

What’s the elephant in the room?

September 11th, 2016

elephant2I remember being a child and planning what my life would be like. I was a natural caretaker and it was comforting for me to take care of people. From a early age I spent time with my grandparents and first they took care of me while later I took care of them.  It was a family dynamic built on love and kindness. As I grew up I supported my siblings in many ways – sometimes more than they liked. My brothers would challenge me. They were sometimes my best friends and sometimes my worst enemies.  I continued to see my cousins who lived next store and were neighbors. We had our own little gang in a small town outside of Worcester.  We were in many ways innocent but challenging too. Today it would be called bullying but for us it was protection, a voice and connection to make sure that we watched each other’s backs.

I remember the days when we would make sure that people on the bus wouldn’t tease any of us in our little group.   We actually made a bus driver upset once and cry as we stood up after one of us was called a jerk. Today, that would be suspension and if anything maybe even being kicked off the bus.  Back then our parents were called, we apologized, learned a lesson.  We taught the bus driver a lesson too — that none of us would allow for someone to be mean to one of our own.   We were  close in age and I remember staying back a grade and being taunted about it over and over again by this boy. My cousin, who was just 6 months older, gave out a punch to create a black eye and bloody lip to the kid who teased me on the playground. He was certainly talked to.  But yet again the other kids knew that we were a group and to be careful if you were not nice or fair to any one of us.

As I grew older and had children. the laws, language and the responses changed. My children, just like in my old neighborhood, had their “group”  and you couldn’t call it a gang as that is not socially appropriate. They would stick up for each other but the things that they did related to a challenge. It was hard.  One time my son was scared and took a letter opener from a teacher’s desk.  He was instantly suspended and no discussion. The principal had left him alone in the room and he was having hallucinations that someone was going to hurt him. He didn’t talk to anyone  but just took the opener.  Of course I explained to him  the meaning of “safe” and “unsafe” behavior.  (This was another set of terms I really do not remember being taught so strongly.  Back then, it was right or wrong with no in between).  For my son, I would have to advocate and discuss with the school why they should allow him to come to school again.

There were other incidents as I raised my children and I would look at my childhood memories and compare.  It was like us years ago being the bully and victim in the same day but now the school had a very different response.  Because my child that wasn’t falling on the developmental chart, he wasn’t labeled as being “Delayed”  instead I was told he was “healthy” except he  would struggle over and over again.  He would be teased with no one to stick up for him, he would do something back and get blamed.  It was an up and down battle as I would ask for the skills to be taught – one of mediation, and advocacy for a friend that would allow growth, responsibility and honesty.  But the difference was that I wanted there to be an opportunity of learning, generalizing and most of all being supported as he learned.

Teachers would be trained on how to recognize and deal with bullying year after year. But I often wondered, Did they also get education or professional development on mental health, trauma, or loss/grief in children?  It is hard to ask for help from a teacher that has no training.  Even after the tragedy in Newton, CT – that was going to be the conversation we had.  Here we are still with the same professional development days: Bullying, CPR, MCAS, and the Massachusetts framework and curriculum.   Where are the trainings on mental health, trauma, adoption/loss / grief, and mediation for children? I wanted to know.

I wish that a PTO would be open to teaching teachers about ALL children. Not just the soccer kids!

Teachers have an amazing and unique job to be with children 6 hours of the day, to teach them a variety of subjects.  But what about skills of learning what do in a difficult situation and how to deal with problems so that society accepts you as a child?  I believe that is the responsibility of the community, school and parent.

Let’s discuss the elephant in the room and get real results!

Meri Viano is our guest blogger.  She is the parent of two sons and a daughter who continue to inspire her blog posts.

Tags: , , , ,

Posted in Blog Posts | 3 Comments »

He’s a late bloomer

August 1st, 2016

late-bloomer-quoteMy son graduated high school a year late.  This was mostly due to the large chunks of time when he was hospitalized, which created gaps in his academic life.  He got his driver’s license years after most of his peers.  When he’d envision himself driving his own car, he’d feel anxiety sitting like an elephant on his chest.  It also took him far longer to get his degree at community college than he expected it would.  He’d enroll and begin classes and sometimes become so overwhelmed he had to pare his course load down to one class.  He did it, though, a handful of credits at a time.  Better late than never, I’d say to myself.

I fervently wanted these milestones for him and was (mostly) patient as they slowly happened.  But I worried.  Sometimes it was like watching paint dry or grass grow.  You are pretty sure it’s going to happen but the wait seems interminable.  And I’ll admit that while I waited, there were times when I had my doubts and wondered if he would actually accomplish these goals.

One day a relative said to me, “Relax, he’s just a late bloomer.” A late bloomer?  No one had ever said that before.  We lived in the land of therapeutic frameworks and mental health shop talk.  I thought every day about his mental health diagnosis and how to minimize its impact. I thought about challenges and mentally outlined strategies to overcome them. Late bloomer?  This was a new way, a refreshing way, to think about these things.

We live in a time of early achievers and routinely hear about people who are millionaires by age 30.  Parents enroll their children in carefully selected preschools, trying to ensure they will have a stellar academic career.   In the midst of this celebration of those beating the curve and young people achieving goals far before their peers, late bloomers are getting some attention too.  Malcolm Gladwell wrote a piece in the New Yorker titled “Late Bloomers” and points out that “On the road to great achievement, the late bloomer will resemble a failure.”  Others have written about famous late bloomers including Alexander Fleming, who discovered the first antibiotic, penicillin, at age 47 and Harlan David Sanders who founded Kentucky Fried Chicken at 65.  The lesson?  You can’t always tell how well someone will do in adulthood by simply looking at their early years.

When we say someone is a late bloomer, it is often more of an observation than a judgement.  I like that.  It takes a lot of pressure off and recasts slowly checking off your milestones list into a “we’ll get there when we get there” kind of thing.

The attitude behind it can vary too.  Your aunt at the summer reunion can call your child a late bloomer and then compare him to others in the family who turned out just fine.  It makes you feel like it’s a family trait similar to a love of fishing or a knack for cooking. Your co-worker can label your child a late bloomer and you might hear a hidden question such as, “How are things going?” behind the term but they don’t actually say it.  You can point out that your daughter is a late bloomer and imply that wonderful things are yet to come.  It’s not clinical jargon.  It can have dozens of meanings and implications.

Inherent in the definition is the idea that most late bloomers eventually catch up.  I like that, too.  My son got his diploma and his degree in the same order as his peers.  It just took him longer.  Okay, significantly longer, but that was just right for him.

Like the rest of us, some late bloomers burst into incandescent flower and people take notice, while others have more modest achievements.  The range is pretty wide, so I could slot my son right in.  Late bloomers, bloom, that is, they arrive, get there, make hay, pull it off and wind up okay.  It’s just on a different, maybe slower, timetable.

I’m not the first to say we tend to pathologize our children far more than we need to.  As parents, we learn to speak the jargon and frame the issues in the way we need to make the system cough up what our children require.  Most of what’s been written has focused on the tendency to look at normal restlessness or distraction in children and diagnose or medicate it.  For those of us who have children already clearly diagnosed, it’s pretty easy to apply that clinical framework to things that might actually be normal.  If any child missed as much school as my son did, for instance, that child might very well graduate late.

This is the final lesson of the late bloomer: his or her success is highly contingent on the efforts of others. In Gladwell’s article, he compares two artists, Picasso and Cezanne.  Picasso was the early genius whose art took the world by storm.  Cezanne was the opposite and his best paintings were done at the end of his career. Both have paintings in world famous museums and have paintings on the 20 Most Expensive Paintings List.  Picasso has several on the list while Cezanne’s lands at #1.  Because his success came far later in his life, Cezanne depended on patrons to support his work and believe in him.  Many late bloomers, Gladwell notes, depend on the same two things – the support and belief of others.   Sounds like a parent, doesn’t it?

Tags: , , , , ,

Posted in Blog Posts | 8 Comments »

Drop the darn house, will you!

May 22nd, 2016

lollipop guild wizard of ozYou walk into the therapy session and know that your child is going to do whatever is needed to get that compliment or sticker afterward. When you have a child like mine, they go all out to get even more:  a reaction or someone to tell them that they don’t deserve it.  This is the one who challenges you into thinking that the mayor of munchkin city is the one that should be able to rule the whole office.

Parents like me know the reality of having over 5 different therapists in a single year who give up on a 4 year old. Other therapists are not really sure what to do and that, too, can turn out to be a nightmare for everyone. Reality hits home when people in the waiting room see you coming and tell their children to stay away from the “little” monster coming in.  Do you know what control looks like from a little one all of 4 years old?

The developmental stages of children are used a lot to explain a child’s behaviors to parents.  But they don’t explain that being super bossy and taking charge of other kids your age, or even older, can create social issues. Nor do they explain that if you are telling lies, you are not just “cute” or have a strong personality.  They don’t make it clear that when your  4 year old starts to push kids off swings and take control of the playground, well that’s not about social skills.   I remember telling our therapists these stories when my child was 4 years old.  I kept insisting that these things were not age related and definitely not developmental.  The therapist would say,” It all gets better by observing and following your example.”

What do you do when your child is 16 and it isn’t? What do you do at 18 and it isn’t? Where do you go and how do you explain it now?

Well, the lifesaver is that parents find other parents.  Sometimes it is not the local baseball team or soccer club or even the PTA in your town. Parents like me usually find other parents who are not even in their community, dealing with the same challenges while trying to figure out what to do next.

Did you know what when you try to be the parent you wanted to be you quickly find out that you have to change and adapt to your child’s needs? And while you learn about  trauma, emotional and behavioral health while experiencing it all at the same time, it feels like a never ending tsunami?

I enjoyed the article by Richard Donner that looked at the way parents of children with mental health challenges react to  “Welcome to Holland”  a poem by Emily Perl Kingsley. The poem compares the experience of becoming the parent of a special needs child with landing in Holland, when you’ve planned a trip to Italy.  You have to learn to accept the lovely things about Holland and accept you are not going to Italy after all.

In the article, Barbara Huff, the first director of Federation of Families for Children’s Mental Health, reads the poem and says, “I’d be relieved to know I was going to Holland or anywhere for that matter, but the reality is that the plane I’ve been on hasn’t landed yet and I don’t know where we’ll land. There aren’t any guidebooks and I don’t know what phrases to learn. About the time I think I know where we’ll end up, something happens. I would be happy to land anywhere if somebody would tell me just where.”  Her experience, the article says, is shared by many parents whose children have mental health needs.

It really is very different to wake up and walk out of your home with a child and you cannot figure out what is happening and the reasons on what is happening..

I remember times when I tried to explain to people what was happening and I needed to get them to understand that how my child was acting wasn’t because I was a bad mom.  I wasn’t a mom who did not care or want better for my kids. I remember people telling me that parenting classes would teach me what I needed to know.  Or they’d say that I needed to be more strict, or even put him in daycare with rule.  Yes, that would be better.

Really? I have gone to so many classes and continue to try and try just to get it right.  Sometimes it works for a bit then it shifts . It shifts for the same reason.  My intelligent kid figured it all out.  Even when I was consistent or strict, it didn’t seem like the answer.

So, as Richard Donner wrote, for parents whose children have mental health challenges it’s not as easy as adjusting to Holland.  Even when you plan, a disaster can appear – a runaway roller coaster, a tsunami, or maybe a tornado touches down in my back yard for me.  So, just drop the house and change our lives so that the mayor of munchkin city can be happier and not as stressed and most of all have lots of friends.

Meri Viano is our guest blogger.  She is the parent of two sons and a daughter who continue to inspire her blog posts.

Tags: , , ,

Posted in Blog Posts | 3 Comments »