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When parent voices pop up

Logo_Portal_POPWhen I first began talking openly and publicly about my son’s mental health challenges, other parents would pipe up about their own experiences.  I expected this.  What I didn’t expect was the number of people who pulled me aside in the ladies room or followed me to the parking lot to share that their daughter already had 5 diagnoses and was only 12 or that the insurance company wouldn’t budge an inch for treatment their son needed.  They were parents, aunts and best friends who were uneasy talking publicly but had interesting, often important things to say.

I remember one mom, a confident professional, pulled me aside but had a hard time coming to the point.  She first complimented me on my necklace, talked about the weather and asked how my son was doing today.  Her 13 year old son had been sent home from parochial school because he obsessively drew pictures with blood dripping from the ceiling, the walls, the trees, the buildings and most everything else.  They didn’t want him to come back. “No one at work knows, she confided.  “And I don’t know what to do next.” Ironically, we had just been in a meeting about transitions.

I wondered, “How do you capture those voices and experiences so they can be part of the conversation, just as if they had spoken up themselves?”  I decided that one wonderful way is through surveys.

Now, let’s be clear.  What I mean here are parent-designed, parent-piloted and parent-analyzed surveys.  The kind where parents tell you what THEY want you to know, not necessarily what researchers might want to study.  The kind where the questions are crafted to be parent friendly in tone and wording. The kind where parents often pour their hearts out when asked to answer, What else do you want us to know?  Some even write, ”Thank you for asking. No one else ever has.”

Parents respond to our surveys in droves about specific topics such as waits for services or their worries about privacy.  They care deeply about communication with their child’s providers or school staff.  They feel conflicted about psychiatric medications, even though most report that it works, helping their child get through the school day, manage his moods or even help keep her out of the hospital.  They report jaw-dropping experiences with stigma again and again.  They have important and interesting things to say.

Yet, they are rarely asked their considered opinion of the mental health services their child receives either by provider agencies delivering the services or state agencies funding them.  (They might be asked if they like the service but aren’t asked for specifics or to write about details they care about.) They are seldom given the opportunity to decide which outcomes matter to them and their families.  Is it school attendance for their child or is it more parent time with the other siblings? They are unlikely to have the chance to write a review as they can do with other services they purchase.

That’s so 1999, isn’t it?

The retail and hospitality industry completely understand that in today’s world, customer voice can have a major impact on their business and reputation.  Anyone can leave a review on Yelp, amazon or TripAdvisor, reviews that are there for others to read before they decide to buy.  Long gone are the days when customers called an 800 line or wrote an email.  Online reviews and opinions are easy to find and read, comment on and add to. Ideas about customer service are shifting rapidly and in the customer’s favor.

The consulting firm Walker, said in their report “Customers 2020″ that by 2020, customer satisfaction, more than price and product, will be the key determinant of success.  Customers leave more often, they noted, because of poor quality service than because of price considerations.  Unlike mental health, companies are pretty unlikely to blame the parent, um, customer if they say the product doesn’t meet their needs or they don’t continue using it.

The children’s mental health system lags far behind. Of course health care, especially children’s mental health care, is not the same as a car dealership or fancy hotel.  It’s harder to actually get into treatment or services for starters.  There are eligibility or medical necessity or determination criteria to be met.  There is a shocking shortage of professionals and openings.

Health care professionals are beginning to realize, however, that customer or patient satisfaction matters.  According to Jeffry McWilliams, a physician who writes for KevinMD, customer service in a health care setting means spending time with each patient and treating him or her with respect and courtesy.  It’s about effective communication as much as effective services.

Low parent, um, patient satisfaction has other consequences, too.  For every person who complains, there are 20 more who do not, but are unhappy.  70% of people who received unsatisfactory care won’t come back to that facility or provider again.  75% of dissatisfied health care consumers talk about it and will tell 9 family members or friends.  I can vouch for the last one.  It’s a much larger number if the parents are on social media.

So, back to those parent surveys.  Last spring, PPAL posted three “pop-up” surveys and parents rushed to take them.  They answered questions about access, about medications for their children and about stigma.  Many of the questions were the same ones asked over the last 15 years and many of the answers were the same ones as well.  Parents had interesting, often important things to say.   Three of the top findings included:

  • In 2001, 7% of parents reported that their child was uninsured; in 2016 that number had dropped to zero.  Yet, even with insurance coverage, 83% report that they wait weeks, even months to get appointments in the same proportions as 15 years ago.
  • In 2006, 85% of parents reported that their child had had only one prescriber for psychotropic medication.  In 2016, only 16% have had one person prescribing medication and almost 20% have had 6 or more people prescribing for their child.
  • 1 in 4 parents reported that their child had been treated differently by the emergency room staff when seeking treatment for a medical problem, once the staff found out the child had a mental health diagnosis.

Parents didn’t have to pull me aside to tell me how they wait preposterous amounts of time for services, although they do.  They took the survey online. The answers of the outspoken parent and the quieter one combined in the pop up surveys to point out the same waits and gaps.  No one has to corner me in the ladies room to tell their stigma story or how they spend more time looking for a prescriber than staying with one.  (Some still do that, too.) They just went on line and told their story there.

Parents are the amazon reviewers, the mystery diners and the consumer reporters of the children’s mental health system.  They are savvy, practical and honest.  They can certainly point out what is working and what is not.  My fantasy is a TripAdvisor-like site for children’s mental health with a free app for every parent’s smart phone.  Maybe then parent satisfaction would pop up as a priority.  I know they would have interesting and important things to say.

 

Staying quiet

children-209779_960_720The night my brother blackened both of my eyes in a violent, alcohol-induced rage,  I think you could hear a pin drop. I wonder if I’ll ever forget the sound of his fists on my cheek; my skin was so young, so soft, that I felt like they absorbed every inch of his knuckles. My mother watched. She sobbed, she yelled. She was his next target. When I called the police, they both tried to act like everything was fine. My mother, desperate to protect her teenage son, so lost in his addiction and mental health needs, begged them not to bring him to jail. “She shouldn’t have called you, I’m sorry guys,” my mother expressed, only minutes after her head was lifted from the hardwood floor. “I think she did the right thing,” said one officer. The other said, “What do you want us to do with your brother?” My mother shot me a look and I mumbled, “It’s fine.” I remember her straightening up, as if getting ready to protect him. “Are you sure sweetheart?” he asked again. “She’s sure!” my mother quickly interjected. I nodded. Avoided eye contact. Stayed quiet.

When I went to school the next morning, neither of my parents asked me if I felt up to it, if I was okay. All of my friends thought my boyfriend had hit me, and vowed that everything would be alright if I told them the truth. As I had gotten used to, I remained silent. What was I going to say, that my 6’2” brother beat me to a pulp, and that his eyes had glazed over and hardened, had never seemed to really see me? No one wanted to hear that. People knew how siblings fought, sometimes roughed each other up a little, all in good fun. Most of my friends thought I was an only child.

In the weeks following the incident, I would run up to my room and lock my door. I thought about running away, or moving in with a close friend. I got so far as to get her parents’ approval. I got straight A’s in school, had a lot of friends, did sports, and was a pretty good kid. Every ounce of my effort went into maintaining this picture. No one knew that my anxiety disorder would often get so bad, that panic attacks would disable me for minutes at a time. My severe depression crippled me, making me fall asleep on the floor crying. It made me turn to self harming to feel any sense of control at all. I spiraled in silence, and no one noticed.

When I expressed interest in relocating for my safety, my mother vehemently denied any possibility or need to do so. If my brother got through a day sober, it meant, to her, that things were looking up. I would be fine at home, and I was making things worse again, like the night I had called for help. I heard that that night  was my fault, time and time again. I was told this to my face, with my purple, hollow eyes looking back at her. I nodded. Avoided eye contact. Stayed quiet.

It’s all too common that the siblings of individuals with substance abuse or mental health needs go unnoticed. These crises upset an entire household, especially young, impressionable siblings. They may even get blamed for triggering an episode. These individuals grow up believing that their sibling’s violence and instability is their fault, and that they can do something to help. The trauma they witness will remain with them forever; many will never receive the recognition or support they deserve to help them heal too.

It’s important that the siblings of individuals with substance abuse and/or mental health concerns have their voices heard. They often hide in the shadows, trying not to make waves. I felt shrouded in shadows for so long, that when I moved out on my own after high school, the light nearly burned my skin. People asked about me and my experiences, and I started to tell them. I began paying attention to what I nodded to. My eye contact became strong, resilient, almost defiant against what I had borne witness to in years past. And I stopped being quiet. My voice has become loud and unwavering, and it’s a gift that I use whenever I am able.

Our guest blogger is a young adult who wishes to write anonymously

He’s a late bloomer

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?