Tag Archives: mental health

Where is the #hashtag advocacy for children’s mental health?

August 10th, 2015

hashtagsEverywhere I look, I see hashtags. They are on Twitter, Facebook, Instagram and other social networks. They help us find others who are share our interests – just look up #mentalhealthawareness on Instagram and browse through the images. Hashtags are used to promote awareness, too. “Look at this,” hashtags say, “I care about this and you should too.”

Hashtags have really caught our attention at key moments. In 2014, #BringBackOurGirls drew the world’s attention to the kidnapping of 276 schoolgirls by the terrorist group Boko Haram. Sharing #JeSuisCharlie let everyone know that you were standing with others for freedom of speech after the massacre of 12 people at the Paris newspaper Charlie Hebdo. Started in response to the trial (and then acquittal) of George Zimmerman, #BlackLivesMatter compels us to focus on systemic racism and police brutality and is one of the most successful hashtags. In our sound-bite society, hashtags can capture a thought, unify a public conversation and link us together.

But some are better than others. I am on the hunt for one that can springboard children’s mental health into everyone’s awareness. Sometimes, when families call with a heartbreaking story I think we should use #TreatmentWorksWhenYouCanGetIt or #FightingStigmaComesAfterFightingForCare. Then I realize we want to galvanize people, not sadden them.

Hashtags became truly popular after first being dismissed as too nerdy. Chris Messina, who introduced hashtags in 2007, was told by Twitter that it was never going to catch on. His original idea was to organize tweets and messages into groups so that people interested in #mentalhealth, for instance, could sort through other people’s comments and see only the ones they were interested in. It’s hard to think today of how we would do any of this without hashtags.

Using hashtags didn’t stop with grouping posts or tweets. Organizing messages is like library science. It helps us locate and gather information but then what? How do we move from informing to messages we can act on?

Almost 3 billion people worldwide are on social media every day. Some of us get our news and updates online while some simply keep up with friends and relatives. Smart, effective hashtags have a unique ability to reach tens of thousands with a quick, clear message.

Thousands have become hashtag activists, realizing early on that we can bring the public’s attention and empathy to a cause or circumstance that would have been unnoticed. Although this can create solidarity and visibility, there is debate about whether awareness can lead to significant change or move a sleeping giant. The jury is still out. What hashtag advocacy does is reframe the public conversation and perception. We have a chance to do this for children’s mental health.

We have a chance to change how people see our families – the parents and siblings of children, youth and young adults with mental health challenges. To me, they are all unsung heroes, hanging in there, innovating on some days, sighing silently on others. When NFL player Ray Rice was caught on video camera punching his then-fiance, many wondered why she didn’t leave him. Stories from domestic abuse survivors poured out on social media under #WhyIStayed which changed the public’s view.  Can we do the same for our families and create a hashtag that leads to an avalanche of stories? What about #WhyIWontGiveUp or #NotStoppingAnytimeSoon ?

Because mental health issues show up as behavior, many young people are judged, isolated and belittled. It breaks our hearts as parents to see them hurt for things they cannot (yet) manage or control. I remember having many conversations with my son’s therapist about the constantly moving line between “cannot” and “will not” and then realizing so much fell into the “cannot” category. I fervently wished I could make the light go on for others too. Can we try out #ItsCantNotWont or #WhyIWontEngage ?

Take a look at the top hashtags for mental health. Most are organized around diagnosis such as #anxiety or #ptsd. A few link to resources such as #suicideprevention. So far, organizing discussions by diagnosis and content hasn’t moved us forward. Messages have to be strong, compelling and clear. They also have to let others know that your issue should be a top priority. Does #mentalhealthmatters really make it matter more to anyone new?

We need a hashtag for children’s mental health. Even better, we need a succession of them so that when one fades away another will replace it. We need a hashtag that will change the negative media images of young men with mental illness doing violent things into an I-get-it-now moment. One that will catch the attention and energy of Americans focused elsewhere. After all, 1 in 5 children experience a mental health issue each year, which means just about everyone knows a child or youth dealing with these issues.

What’s your suggestion?  #LetsHearIt

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Advocacy is power

July 27th, 2015

mother and daughter embracingMy mom was in her mid 30’s when she was first diagnosed with major depression. I remember coming home from school, hoping to see Super Mom, but instead I found her lying on the couch, fast asleep every day. I was young, and I didn’t understand why she couldn’t just snap out of it. “What is there to be this sad about?” I thought. It wasn’t until I fell into my very own bout of depression that I understood.

When I was fourteen, I was diagnosed with bipolar disorder with schizotypal features. I, too, began to sleep all day, and my friends wondered why I couldn’t just snap out of it. While I slowly dissolved into the living room couch, my parents fretted over my future, and it was the first time in years that my mother showed any sign of concern, or interest for that matter. Because I was so depressed, I wondered why she even bothered to try.

My parents started to educate themselves on my diagnoses. They learned how to navigate the system and advocate for my needs and best interests. They met other parents who were going through similar things. Eventually, they got me to go to a youth group and an alternative high school that helped me come out of my shell. I was making friends, using coping skills, and learning to advocate not only for myself, but also for better services for youth within the mental health system.

I felt strong again. I was speaking up at my own IEP meetings, making well-informed decisions and partnering with my parents rather than sitting on the sidelines and letting them do all the work. We made a great team. Even my transition from teen to adult was relatively smooth considering my mental health needs. It seemed like I was going to ride off into the sunset a happy camper.

This is my story. Many people have heard it — but I never delve into what happened after the happy ending. A few months shy of my turning 19, my mother’s depression came back with a vengeance. She took to lying in bed for days on end. This time it was different — it was worse than the first time around, and I was older and experienced enough to understand what she was going through. My father and I tried to rally the way they had for me, but she didn’t respond to our efforts. We felt hopeless because she had essentially given up.

In 2011, my father died and I became my mother’s caretaker at the age of 23. Despite becoming miraculously resilient against my depression and anxiety, I was still quite young for my age. I barely knew how to be an adult, let alone take care of one. On top of my mom’s mental health needs, she had mounting physical ailments as well, and I was losing my mind trying to figure out how to care for her. I had no car, limited funds and almost no support. When it felt like all hope was lost and I was going to drown, I remembered that I indeed knew how to swim.

While I did not know how to balance a check book, drive a car, or set up my mother’s oxygen tank, I did know how to advocate. I called doctors on her behalf and got them to give her the care she needed. I helped get her set up with adult DMH services so she could receive adequate supports. I helped her get into a program that helped her with independent living. My voice and determination helped my mother live again.

Today my mother is doing well. She lives on her own with minimal support — but she knows that her team is only a phone call away should she need them. She is re-learning to advocate for herself with my help, the way she taught me when I was young, and while I’m still learning the ways of adulthood, I’m using my skills to make the best of every day. I guess, as it turns out, learning to advocate all those years ago ultimately became my biggest asset.

Chandra Watts is our guest blogger.  She is a young adult who draws on her own life to change how the world sees mental illness.  She is one of the founding members of Youth MOVE Massachusetts.

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Herbal remedies, psychiatric medication and what works

June 7th, 2015

file9041272379125My son told me the other day that he’s trying Melatonin again. This time it seems to be helping. When he first tried it, he was about 12, had raging insomnia which often led to rapid-fire talking and pretty wild and risky behavior. Lack of sleep stressed his brain and pushed him into what he called a “hippy happy” mood and everyone else called mania. When he was like that, I had to keep both eyes on him and do other tasks with just part of my attention. We gave Melatonin a shot and it really didn’t work. Neither did St. John’s Wort, fish oil or a variety of other herbal remedies. I really wanted them to work, but none did.

What ended up working was a combination of two psychiatric medications plus lots of therapy. We tried more than 30 medications during his childhood and teen years and many came with side effects. There was dry mouth, shaking hands, drowsiness, weight gain and the dreaded acne. Medication trials were frustrating, discouraging and it was hard to keep believing there was a magic combination out there. We soldiered through, talking, hoping and sometimes arguing about it.

We looked for something kinder, gentler and more “natural.” It seemed somehow healthier to go into the supplements aisle or vitamin store and purchase something there instead of a prescription at CVS or Walgreens. At those times I felt as if I was investing in his health rather than treating his illness and I liked that. Sometimes we use the terms “mental health” and “mental illness” interchangeably. But there is a difference between mental health and mental illness and how we engage with each one. I tried to increase his mental health through alternative approaches, but he also needed treatment for the illness.

Most parents of children and teens with mental health issues try alternative treatments at one point. For some, they seem to help. For many, they have mixed results. We all receive the same messages from the media, from our families and from other parents. Putting your children on psychiatric medications is risky business, they say. It’s dangerous and there can be long term side effects. Parents like you are cavalier and move too quickly to use medication. Some of these messages are mixed up with a strong dose of parent blaming and a good dash of stigma toward mental illness.

The negative messages about children and teens and psychiatric medication are often unchallenged. For my son, medication kept him alive. He made his first suicide attempt at age eight and there were many more over the years. When he was manic, he was unpredictable. There was the time he climbed on the roof and told us he would float down. There were other times when he would fly into rages and threaten to seriously hurt his brother. There were the weeks he cried and hid and refused to go to school. For some children and teens, medication keeps them in school and at home. It lets them sleep (and lets their parents sleep), focus and function.

When my son was in middle school his therapist wisely said, “Medication is a tool. It helps him be able to participate in therapy. It creates a space between his thinking of something and doing it. It gives us all a tool to help him manage his behavior.” A light bulb went on for me. I realized that medication was not a standalone treatment and I should stop thinking and talking about it that way. It had a context and was part of an larger strategy. My son needed more than one treatment. Without them all, he didn’t do as well. We added and subtracted until we came up with the right set of things: a school program, after school programs, lots of therapy and yes, medication. I wanted herbal remedies to be part of that set of things but it just didn’t add much.

There is always that tension between investing in mental health and treating mental illness. Maybe for some people they are one and the same. It’s certainly essential to do both. But don’t confuse the two. From the time our children are small, we do many things to increase their health, whether it’s emotional, mental or physical. We make sure they get nutritious food, a quiet place to sleep, time to play and lots of love. We find play activities for them when they are small and then shuttle them around to classes and sports when they get older. We bring them to family gatherings, religious services, community events or whatever our family does. We know these things make their bodies, minds and lives stronger.

When there are signs of illness, we notice and we act. We seek care and choose treatment. That is our role as parents. We don’t stop doing healthy things but the emphasis shifts. If it’s a medical illness, we don’t feel guilty about accepting treatment for our child. We also might add alternative remedies into the mix and don’t expect them to replace the treatment. Nobody questions or criticizes us. If the illness is psychiatric, we doubt ourselves. Other people often do the same, echoing what we are already thinking.

My son is trying wellness. He bought some Melatonin when he had a few days without sleep and it helped. We talk a lot about mindfulness and meditation these days. He might try other options soon, too. But these things work best when you are consistent, take them daily or have a daily practice. His medication lets him construct and hang on to that routine. He’s not stopping his medication because it works, he says. And it gives him the calm and quiet space to consider what else could work too.

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Residential: It will never be home

May 25th, 2015

boy listening to musicResidential was four years of my life. It was a place where I had to lay my head at night. It’s not a home and it’s not my home. It’s a place I had to be to get some help. They called it treatment. But I called it help. I was 12 years old when I walked in there and 17 years old when it ended. The hardest part for me was feeling like I lost my family.

It was not easy living in a place that had strict rules given to you by multiple staff. Some gave you the rules stronger and some safer than others. It was hard getting to know all the roommates, the clinicians, teachers, doctors, staff and new house mates. It was hard getting to know the other “clients.” That’s what they called us: the “clients.” I hated being called that.

They told me that I was going home to visit. I really hated that. Home is not a place you visit – it is your home. There were things that over time I figured how to teach them to change. You have to understand I was one of the only kids that had a parent that came to visit me again and again. Others had social workers, probation, or agency people. I was different. I had a parent.

You get the hang of it when you live there long enough. You learn which staff like you, what teachers believe in you and which ones drive you nuts. Everybody thinks that going to a residential is a bad thing. Personally, it was what helped me get help. I was able to deal with my emotions, deal with my trauma and deal with my parent. I learned how to connect. We both learned to be honest with each other. We both had to work hard, but we needed people that would work with us too.

I had a ton of hospitalizations before residential. I had run-ins with the police. Residential was much better than getting locked up. I needed residential. I was angry at first for sure. I was lonely, scared and felt alone. One important thing that I learned was how to talk about my experience with others such as clinicians and staff so that they could learn how to help other kids and families. I feel there were a few things that made it work for me. These are the top six.

1. My parent could visit anytime.
2. My psychiatrist listened to me about what I thought I needed.
3. I was given outside walks and time to move when I needed it.
4. My siblings were treated with support. They could come visit me anytime too.
5. There were no specific times for phone calls — when I needed to make one I got the chance.
6. I had the same clinician at the residential, at my home and with my siblings.

If you are a professional working with kids, remember that you are their support for a bit. But you are not their family.

If you are a parent, don’t give up on your kids. Keep trying and be sure to visit and call often.

If you are a kid that needs help, remember you can do it. Just take care of you and you will make it. I didn’t think I was going to make it but I did and so can you.

Our guest blogger is a young adult who experienced residential treatment and wanted to share that experience anonymously with others.

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Where have all the experts gone?

May 18th, 2015

expertHave you ever wondered where all the expertise in children’s mental health is hiding? The experts are probably out there but they seem harder and harder to find. For parents whose child with mental health needs is “complicated” or “serious” or even both, expertise is critical to good care. There are far too many families reporting that while they’ve had care for their child, that child’s symptoms have not improved nearly enough.

When my son was nine, he had a still-learning psychiatrist, Dr. G, working with him. Fortunately, Dr. G was supervised and mentored by someone extremely experienced and knowledgeable. My son hid, terrified of unspecified things, under the chairs in the waiting room and became manic and rather wild at other times, even rampaging through Dr. G’s office one day. Appointments were never the same twice. When Dr. G left to go to a different position, he said, “Thank you for the opportunity to work with your son. I’ve never met anyone like him before.” While that was somewhat unsettling to hear, I’ve always hoped that he could help the next child and family that much better.

When we saw Dr. G, I expected that he would observe certain behaviors and say, Aha! I know what that means. I thought he would see my son’s fear, mania and depression and have effective, wise advice. But he was learning right beside me. What made the difference was that he had close access to a very experienced clinician, who had helped complicated, serious children before. While there was a measure of trial and error, we had the benefit of someone else’s expertise.

This isn’t always the case for many families.

There is a real mental health workforce shortage here in Massachusetts as well as nationwide. In an Annapolis Coalition report authors note that there is a critical shortage of individuals trained to meet the needs of children, youth and their families. As one example, the federal government has projected the need for 12,624 child and adolescent psychiatrists by 2020 while the projected supply is 8,312. In addition, there is a growing lack of racial and ethnic diversity in the workforce.

The number of therapists is declining while the need grows. We are identifying more children through screening and a focus on early childhood mental health that need mental health care. But these numbers only focus on access. What about expertise?

In April 2015, the Congressional Research Services issued a report on the mental health workforce. “The quality of mental health care, they wrote, is influenced by the skills of the people providing the care, while access relies on, among other things, the number of skilled providers available.”

Expertise matters. Many families search for a therapist, clinician, psychiatrist or program for weeks. They then find that the wait to get in is often even longer. When they get that first appointment or walk through that door, they are looking for someone who recognizes their child’s symptoms or behaviors and can say, I’ve seen children like this before. Or if they haven’t, they have a colleague to consult.

When my son was a little older, he was in a therapeutic school where there were clinicians on staff. They took one look at his mental health record and wisely matched him with a very experienced psychologist. She was patient, smart and skillful. She understood how to help both his teacher and me create an external structure (routine, limits and predictability) when his internal self was in chaos. She never ran out of strategies and used whatever resources were at hand. She explained to me that medication was to help him become more available for therapy and therapy was to help him manage his illness. She had seen children quite like him before.

Many families hold child psychiatrists in high regard, believing them to be the best trained and most knowledgeable. But their appointments are limited by insurers to short increments of time and are usually focused on medication management not detailed observation or strategy sessions. They are also in short supply. As a result, psychiatric nurses often prescribe and see children who need medication. There are psychologists, social workers and bachelor level therapists out there as well. But families report that many are early career, just starting out. Does a lot of time and less experience work? Or does greater expertise but short appointments work better for children, teens and their families?

When my son was nine and I moved back to Massachusetts, I made 16 calls before I found someone who was willing to see a complicated, serious, hard-to-treat child. I found someone by calling hospitals and other institutions because they knew where the expertise was within their walls, although they didn’t know what was in my community. That first person I found led to the second and then a third, who was Dr. G. I had to track down someone like a bloodhound follows a trail. I don’t think it’s easier finding expertise today but I’m willing to be proven wrong.

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