Redefining family

January 8th, 2017

It’s been hard having to deal with a diagnosed mental health challenge for most of my life. Every day I have to be aware of where my emotions are heading, how low is “too low” and the difference between seriously wanting to die and just having a really bad day.  I have to have the recognition that, at least right now, one of the major reasons for my prolonged stability is taking the right combination of psychiatric medications consistently every day.  Having to deal with all of that, and adding a clear lack of family support on top of it, made my journey to my now-almost-four-years of stability a much harder place to get to.

Growing up in a big family, a relatively happy person in a relatively safe small town, family was important to me. Being adopted, I already knew family didn’t have to be blood-related, but as far as I was concerned being part of a family, even an adoptive one, meant that we all looked out for each other. And that even if we had challenges or conflicts, that family was family and you never turned your back on them.

That all changed when I hit an all-time low in my mental health journey when I was 19. I’d been hospitalized off and on about six times before that over a three year period, but I was always able to change a medication, continue therapy, and get back to my life in the community. That year, though, I was hospitalized 13 times, had been admitted to and decided to quit my partial-hospital program twice, and had switched therapists multiple times. On top of all of that, all of a sudden, the little emotional support from my family that I had been receiving was taken away.

I was in the lowest emotional spot I’d been in my life, and now even my family couldn’t stand being around me anymore. In this particular circumstance, I was told by my parent during an inpatient hospitalization, during a three minute phone call, that I would not be welcome to come back home after I got out, leaving me effectively homeless. This one phone call extended that admission for over a month due to my increased suicidality and hopelessness.

Four years later, I have learned some valuable lessons about family through the few rough years that followed that phone call. I’ve learned that family is however you want to define it, and whomever you want to include in that definition. It doesn’t have to be blood-related, or a legal bond, like adoption. It can be whomever you feel is your family.

For me, I now have a self-made family that is my most important support system. It’s made up of close friends from all walks of life who I have chosen to become my family. They’re the adult supporters who cheered me on when I became homeless and supported my decisions in my mental healthy journey. They knew that I was capable of more and stood by my side to help me achieve it. They’re former clinicians who went above and beyond their job descriptions and to this day maintain a connection with me. And they are peers from all walks of life and age groups who sat by my side and heard my lamentations and knew where I was coming from because they’ve experienced challenges too. Peers who would validate my situation, but also wouldn’t let me drown in the despair because they knew all too well the dangers of dwelling too long in the deep end.

I think one of the hardest lessons I’ve had to learn for my own mental well-being is the recognition that even if people are supposed to be family, it is unrealistic to expect support when  that person is not capable of being that supportive person for you. And for me, in my individual journey, that recognition also meant forgiving those people for past hurts, and not holding on to those negative feelings within myself and letting it taint my interactions with them today.

Because for me personally, if I’m still letting those past hurts inform my present, then I’m still being held back from being the best version of myself that I can be. And me not becoming the best version of myself isn’t something I’m willing to risk.

Dani is a 24 year old college student and mental health advocate living with bipolar disorder.  She enjoys writing poetry and singing, as well as being the proud parent of 2 adorable felines.

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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?

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When life hits hard, challenge your challenges

December 4th, 2016

lifeYou’re on the bumper of the guy in front of you, frustrated beyond belief that there’s traffic for some reason today, when you need to make an important meeting. As you’re pulling into the parking lot late, it starts to rain. You try sprinting to the door, but slip and hurt your ankle. After a second to collect yourself, you think, ‘why is everything going wrong today?’

After taking a step back, many realize how often these situations happen; everything seems to crash down all at once, usually at the most inopportune times. Your kid gets sick, work gets busy, and you and your spouse have been having martial disputes. Why don’t these life challenges sometimes feel more spaced out? I looked to physics for an answer to this question. Murphy’s Law simply states that anything that can go wrong will. Feels familiar, doesn’t it?

I went searching for this answer after going through an impossibly hard month. On my way to a work meeting, I was in an accident and totaled my vehicle. It was the first car accident I had ever been in, and I was devastated. To my complete and utter shock, not even two weeks later, I was hit in a rotary while borrowing my parents’ car. A couple of days later, I came down with a cold that seemed to hang on forever. That same week, the kitchen sink broke and I could be seen washing dishes in my bathtub. The next week, I faced stolen packages from the stoop of my apartment. When the month was nearing its end, I felt relieved; did this mean my bad luck streak was finally going to be over too?

On the very last day of the month, one last challenge slipped in; I was awakened to my cat eating rat poison! After a long and expensive trip to the ER, I can finally say that it’s all over. The month has finally ended and there were no casualties (much to my surprise).

So what can you do to counteract Murphy’s Law? Unfortunately, not much. Try to refrain from this pessimistic way of thinking whenever you can, and instead, take responsibility for your life and the circumstances that you can control. The more you feel that you are steering your life rather than having life happen to you, the better. Secondly, expect the unexpected. Life rarely happens how you think it will, even when you’ve taken the same route to a work meeting a hundred times. Take a deep breath and realize that that uncertainty is okay; it’s up to you to react to it the best way you can. Lastly, try to find any good that you can in challenging incidents. Your kid gets sick – it could have been something much worse; work is busy – at least you have a job; you’re fighting with your spouse – maybe you’ll be closer after working through these issues.

The better you become at letting unexpected events roll off your back, the easier you will find your day to day. Ask yourself, will this matter in five years?

Most of the time the answer is no. It’s easy to get distracted and brought down by a million little things that can go wrong, but when you stop to think about it, what really matters? Very little actually; security, health, love, happiness… and will any of those be permanently affected by a minor car accident, or a plumbing issue? The answer’s probably not… so why are you still wasting your precious energy on it?

These are questions that I, too, have to continually ask myself. Challenge your challenges.

Erin Edgecomb is our guest blogger. Erin is a young adult and a member of PPAL

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Without advocacy we cannot change a damn thing

November 20th, 2016

lily-tomlin-quoteWithout advocacy we cannot change a thing.  Heaven knows there’s a lot that needs fixing, changing and bettering in our world today.  Sometimes the changes are small and just need a little push.  But many times, a small push won’t cut it.  Big changes require big advocacy and advocacy requires boldness and bravery.

When I first started advocating for my son, I believed that the school and mental health systems were built to provide services for kids like him and that those services would be delivered quickly and match his needs.  I paid – still do – a hefty sum each month for insurance (surely that would open doors?) and I knew I could make my case.  I figured I could rely on the goodwill of the people who were concerned about him.  I absolutely knew in my heart that these were the necessary ingredients for success.

I know you’ll be just as surprised as I was to find out that’s not how it works.

I lived in Southern California when my kids were young. When my son was seven he was in a regular second grade classroom.  He had already missed the second half of first grade because of phobias, depression and suicidal behavior.  He had had one pretty lengthy inpatient stay.  The school suggested that the school psychologist, Maryellen, evaluate him.

When Maryellen and I met, I felt nervous but sure that we would see eye to eye.  She ran through the test results and agreed with his diagnoses.  She added that he was very, very smart – his IQ was in the near genius range.  She looked me in the eye and said, “High IQs tend to run in families.  His father must be very smart.”  I felt sucker punched and barely heard her say that she felt his high IQ more than compensated for his mental health challenges and therefore he didn’t need any help.  Later I realized I had experienced disrespect as a tactic to change the meeting outcome.  On that day an advocate was born.

Moments like these change things.  You realize the world doesn’t work the way you thought, people don’t act the way you imagined and instead of a straight path from point A to point B, it’s more like a hiking trail over rocky stretches, across streams, in rain, sleet and snow.  It can scare even the most intrepid hiker, but here you are taking the first step.   You learn not just to advocate, but to become an advocate.

It’s unlikely that you’ll get what your child and family need in the mental health world without advocacy.  People don’t rush to suggest services and insurance companies don’t agree matter-of-factly that you should get that treatment you identified.  You find out you have to make it happen.  You may become an advocate eagerly or reluctantly, by immersing yourself in knowledge or fighting every step of the way, but you change yourself.  You change your expectations, you change your definition of success and most of all, you change who you are.  As one mother said to me, “You become the parent your child needs, not the one you thought you’d be.”

Advocacy can be uncomfortable.  For those of us who didn’t raise our hands for the teacher to call on (because then everyone would look at you) or make waves or dig in their heels as a matter of course, it doesn’t feel natural at first.  Advocacy is something done publicly.  It is played out in a setting that is very different from many other things we do.  You do it in front of an audience, sometimes big, sometimes small.  While some nod their heads along with the points you make, others assume a “show me” stance.   When you get them to nod their heads too, even a little, you feel pretty fine.

You learn that advocacy does not have to be adversarial.  It is sometimes, but many times it’s not.  Lots of times it’s about being articulate, passionate, persistent and even patient.  It’s also about being prepared and being stubborn.  It’s about looking for options and sometimes creating them.

Without advocacy, people assume we are okay with the status quo.  Without advocacy they don’t hear us or overlook our perspective.  Without advocacy, we cannot make a difference for our family and for other families.

For many families, figuring out how to go about advocating is like playing a Jeopardy game.  You know the answer you want and you try to figure out the right questions to get there.  Advocacy is a skill, or set of skills, just like playing Jeopardy.  If you hone those skills, you might get the jackpot instead of the smaller prizes.  But even if you are a terrific player, there are still heartbreaking consequences if you make a misstep.  You have to trust in your skills when you cannot trust in anything else.  Unlike Jeopardy, there are days when you do everything right and you simply don’t win.

Advocacy is also about picking yourself up and going to the next meeting, the next discussion and bringing your A game one more time.

When I first began talking to other parents about my son and how we worked to get the services and treatment he needed, some would say, “I didn’t know you could say that” and a light bulb would go on.  Others would share their own stories.  Some would ask me to help.  When I did, I learned that if you help one family, you only help one family.  The barriers remain and the rocky stretches, treacherous streams and bad weather are there for the next person.

Individual advocacy for my family and other families was important, even crucial. But nothing changed for the families coming along after us – they were likely to hit the same snags and experience the same hazards.  Systems advocacy – working to change policies, laws or practice – changes things for many more families. The first time I sat at a policy table, I realized that here was the place to bring all those family stories, the skills I had learned and the hard won expertise.  Here too, you sometimes fight to have your perspective heard but when it is, it doesn’t echo anyone else in the room.  It’s why you are there.

My son watched me advocate over the years first for him, later for families like our own.  One day, he said, “I want to listen and watch.  I think I can advocate, too.”  Great, I told him.  And he has.  It’s a big undertaking to become a self advocate, with emotional fist pumping moments and moments of deep disappointment.  He understands that, too.  One day, when we were talking I told him, “Advocacy is our family business, you know.  Some families have stores or restaurants or trades where the children learn a lot about the business from an early age.  Just like you’ve learned about advocacy.”  He grinned and nodded.  “I’m okay with that,” he said.

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My dear friend: my experience with grief

October 24th, 2016

angel-and-griefI’m not a religious person. I don’t attend church, and I don’t pray before bed. Even though I am not religious, I do believe there is life beyond death. I believe there is a place where our loved ones can connect and watch us from above. If there is such a place, I know they gained an angel when my friend passed on.

One of my great friends passed away in April of 2015. The day I found out was the worst day of my life. I went on social media, and it was flooded with posts about her. She had committed suicide at the age of 17. I couldn’t believe the things I read. I cried all night long and school the next day was spent with counselors. I had never experienced the loss of a friend, and it tore me to pieces.

I attended her calling hours shortly after that. I cried with her mother, who gave me a huge hug. I cannot imagine the pain her mother was and is feeling. Losing someone is never easy, especially someone so young. Grief has stricken me ever since. I’ve spent the last year spending most of my days at home, crying because I miss her so much.

She was a remarkable person. She cared so much for others, but tended to neglect herself. Her smile was contagious and she always had something nice to say. I don’t think there was a mean bone in her body. That’s what made her such a good friend.

I’ve gone through all the “what if’s”. What if I could’ve done something? What if I had listened more? Even with those questions, I knew in the back of my head it wasn’t my fault. I didn’t do anything wrong. However in the sad moments, your mind thinks of all these sorts of things.

Grief is always a difficult thing to cope with. More than a year later I still am trying to handle these feelings. I wish I could say I have come to terms with losing her, but every time someone brings her up, or when I bring her up, I feel an emptiness in my heart. I feel like a part of me is missing.

What I have learned is, it is totally normal to grieve for a long time. I like to take comfort in my belief that somehow, my dear friend is in a better, less depressing place. She deserves that much after what she went through.

For all of you who have lost a loved one, no matter the circumstances, remember you deserve to continue on. Try to make the world a better place, and never forget your loved ones.

Rachel LaBrie is our guest blogger.  Rachel is a young adult who strives to someday become an author. She also loves spending time with her 5 four legged friends.

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