Tag Archives: stigma

Stigma: it’s in the little things

November 1st, 2015

sad womanStigma is about the little things.  The averted look, the space people suddenly give you when your child is behaving oddly or aggressively and the expression that says clearly, “Why don’t you control your child?” It’s those little things that wear you down. They appear so subtly, so fleetingly sometimes, that a strong reaction seems out of place. So we get a little more vigilant, become deliberately less sensitive to the people around us and learn to get through our day.  The little slights sting and sting again, like being punched on the same bruise over and over.

It’s only the big stigma stories that get attention, yet while they are important they happen less frequently.  The little things happen every day.

We all have our stigma stories.  They are like war stories that we tell one another as comrades in arms.  I remember a couple telling me a number of years ago about their 12 year old son.  He was being treated for depression and they put him in parochial school where the class size was smaller.  It worked for a while.  Then the mania, the fixation on death and blood, the impulsiveness and the risk taking rushed in and they began to understand that they were dealing with much more than depression.  He began drawing pictures of his teachers, his friends and family covered in blood or dying.  “We can’t have this,” his school said. “You’ll have to find a new school elsewhere.”  His parents asked me if he had been newly diagnosed with a medical condition, would the school have made the same decision?

We gasp and shake our heads when we hear these stories.  It’s stigma, it’s lack of education, we say.

But it’s the small hurts caused by stigma that are often harder to bear.  For me, it was the time the nurse in the pediatrician’s office read my son’s chart (with multiple medications, diagnoses and hospitalizations listed) and I watched the look in her eyes change.  The way she touched him to take his temperature and blood pressure went from confidence to wariness and when she left the room, she sent someone else in to finish the rest of the visit. It was the look in other parents’ eyes when my son was on a carousel and every time his horse rounded the bend to cruise past me, he yelled, Snot! Barf! and the words got worse and worse.  I stood helplessly there waiting for the ride to end while I endured the looks of pity and contempt.

In a study in 2010, researchers examined stigma focused on children’s mental health and found that there were three targets of stigma.  The first, as we all know, is the child or teen who has the mental health challenge. The second target is the family or caregiver.  Mothers, they noted, perceive more stigma than fathers and parents of children under 12 experienced more stigma by association than those with older children. Unsurprisingly, this increases what researchers call caregiver strain, or the stress of coping with both the child’s mental health issues, the impact on the family and the additional stress of dealing with the reaction of others.  The third target of stigma was mental health services themselves.  This was seen in a variety of ways from communities opposing group homes or clinics locating there to stigma toward mental health providers themselves.

The small, frequent experiences of stigma hurt in several ways.  There is the hurt you feel for your child.  It’s not just for what is on their plate each day – in fact there are days we admire our children and their creativity and strength.  It’s the looks they receive, the slights they experience and the subtle shunning.  Then there’s the more infrequent but still painful experiences that their siblings go through.  The teacher who also taught their brother who says, “Oh, you’re John’s brother.  I see.”  The receptionist at the dentist’s office who gives a fake smile and remarks, “Oh yes, your sister was in here last week.”

Finally, there’s our own hurt as parents.  It’s a smorgasbord of our own experiences and those of our children.  Whoever said stigma is going away hasn’t walked in our shoes.

Fighting stigma is important work.  It’s one part education, two parts advocacy.  There are a lot of misperceptions about children’s mental health needs out in the world.  Campaigns such as Bring Change 2 Mind encourage people to tell their stories, to initiate public awareness events and use social media to start conversations and well, change minds.  But until we see the small things, the looks, the pained smile and the slight drawing away lessen or even stop, we cannot say that we’ve vanquished stigma much at all.

 

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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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Reaching Out

April 27th, 2015

rowofkidsReaching out and helping youth and young adults is very important. To give us attention shows us that you really care. Reaching out and helping is one of the best things that anybody can do. Look at all the trouble that happens to youth on the streets every day or that’s caused by youth and young adults.  We search for support with our actions. We speak out to you with no answer. It’s our cry for help.

I am amongst the youth and have done things in the past in an attempt for attention and support. I have set fires and even fought at school. I’ve been to different programs in three different systems. I stuck with a few programs for a while but eventually ran or decided they were not for me. One program has been helping me for five years now. I think they will always be there for me.

I have been going to PPAL and Youth MOVE for five years. It is a wonderful placed to go that reaches out to you. They talk to you, ask you how you’re doing, and offer you help whenever they can. PPAL has helped me a lot. Helped with things such as getting my ID, helping me find a job, and given me people I can talk to.  PPAL has groups every week for youth and young adults. It’s a good place to talk because it’s not run by doctors or people sitting in the corner with a clipboard, it is just youth talking to each other. We have dinner together. I can also hang out with other youth and young adults that are around my age group and listen to their experiences. I can get feedback about how I can deal with some of my experiences in the past or even problems I have now.

Before coming to PPAL I was really scared to talk about anything and when I opened my gates and started talking, I felt so much better. I began coming constantly and kept getting support emotionally and now I help as well. I help set up the groups and run parts of the meetings. Sometimes I stay away for a while and am worried about going back. I worry about how I might be judged. PPAL doesn’t judge me for why I was away. They welcome me back and help me get back on track. They offer to help.

I am a troubled youth just like a lot of youth. Many of us feel alone and like we have it the worst, but you are not alone. Talk to somebody. Open up. You might find somebody who is reaching out to you. I can personally say that a lot of people at PPAL know what they are talking about. We don’t fake it. We know how you feel. We will help.

 

This blog was written by a 19-year-old young adult member of Youth MOVE Massachusetts. They have lived experience in mental health, child welfare, and juvenile justice systems. Their strengths include leadership skills and writing poetry to name just two.

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That’s what our families look like

March 16th, 2015

Girl arguingLast week a mother was describing how differently her family was viewed by two very separate people — a clinician and a child welfare worker. She said, to a room of parents whose children have behavioral health needs, “You know how our families can look from the outside to other people?” Everyone nodded. We knew. The mother then went on to recount that when her child and family had in-home therapy, the clinician saw mental health problems. When DCF was asked to provide voluntary services, they came in looking for the ways the parents could have “caused” the mental health problems.

Many of us realize early on that having a diagnosis for our child can open doors. Insurance requires one for billing and special education plans usually do too (even though that is not supposed to be true). There is something to be said for that feeling when we can point to a diagnosis and say, “Aha! I knew it was something like this. I am not a bad, or incompetent, or seeing-things-that-aren’t-really there parent. What is going on has a name and a description and a set of treatments.” We feel relieved for a little while.

But then a new confusion sets in. The doctors and therapists and teachers and the in-home workers all have a diferent idea of what a diagnosis means. And they often have a different idea of how you should parent when your child has a certain diagnosis. Let’s say your child has been diagnosed with bipolar disorder. You run to the internet and get a descripition. A lot of it fits but some of it seems off the mark. You know your son or daughter has extreme moods but you wonder if not being able to focus is part of it. What about her defiance? What’s the best approach — setting limits, being flexible, a combination? And once you’ve figured all that out, how come what works on Saturday doesn’t do the trick on Monday? We can end up looking like inconsistent, ineffective and confused parents. From the outside looking in, that’s what people see.

Social attitutes and stigma about children’s mental health needs contribute to all this. Some people (okay more than some) blame parents for their child’s behavior, moods and inability to manage things better.

It’s not just the children or teen but the family as a whole who are often subjected to stigma. Parents may also experience increased stress, strain, and social isolation as they care for their child while attempting to buffer themselves and their child from the negative attitudes and perceptions of others (Mukolo, Heflinger, & Wallston, 2010). Some parents may stop taking their child to public places for fear that their child’s emotional or behavioral problems will be triggered and result in negative reactions and judgments. Others may feel they have to educate whoever is interested. Still others tough it out and let the chips fall where they may. But we are all aware of outside judgements and interpretations.

A few years ago, I took two parents with me to talk about our children and mental health issues on a local radio station. One was a dad from the north shore who had overheard a teacher talking about his child in a local grocery store. The teacher was describing his son’s problems and behavior which had included a psychiatric hospitalization. She saw it as a discipline problem. I had my own stories to tell as did the other parent. Afterward we spoke with the radio host, who herself had experienced depression. “I’m curious,” she said. “You all have your own experiences and I’d like to get your opinion.” She told us about her friend, who had an elementary school son with bipolar. She thought her friend would parent differently; instead she let a lot of things go at bedtime. She wasn’t stern, she negotiated, she was careful not to anger her son. The radio host couldn’t figure it out. From the outside, this looked like a tentative, unconfident parent. To her, it didn’t seem like “normal” parenting. The other parents and I looked at each other. “When you have a child like that,” we all said. “You do what works, which is often not what you thought you’d do.” We explained that you adjust and manuever constantly. You create a “new normal.”

Some of us worry that we play a part in our child’s problems. We blame themselves and feel that we should have “seen it sooner” or wonder if our child’s mental health problems are a result of our failure in some way. This leaves us feeling vulnerable. If that child welfare worker or clinician pokes at that vulnerability, we may look like a deer in headlights, frozen in our feelings.

This is what our families look like. We are constantly reinventing parenting. We rarely know what’s going to work before we try it and we are constantly looking for things that do work. We know that chaos is often right around the corner and we find things to fend it off. Whether it looks smart and creative or inconsistent and poorly planned depends on your point of view. It also depends on your training. What parents know is that it’s pretty unilikely that our children will learn by just absorbing the rules or make strides from rigid discipline. And what works one day or week, may not work the next.

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How PPAL has Helped Me

March 4th, 2015

leaveshouseI know that Youth MOVE and PPAL are specified as a non-therapeutic group. That is because clinicians are not allowed to attend the groups or meetings. There is no therapy involved, yet they have helped me through a lot. They gave me a place to go when times were tough. I looked forward to going to the Youth Groups and attending the conference each year. That was possibly the only thing that kept me looking forward.

I’ve been home schooled for the past 2 years of my life because of issues with bullying. I remember being so afraid the first time Lydia and my sister Bella, also an intern, talked me into going to one of the youth groups. I hadn’t been close to kids around my age for awhile. I remember saying to Lydia that I was too scared and shy to be there.  Their exact words to me were, “Oh good, you’ll fit right in!” So with that I went into that youth room scared out of my mind but came out a completely different person.
I started to get excited to go to group each week! If I missed one on my own accord I’d feel bad – like my week wasn’t completed. It gave me a sense of hope in myself. I thought I’d never get to go into a place with other teens and come out alive. Without PPAL I may never had been able to fully go to a place surrounded by people and actually feel safe.

I started my internship at the age of 13.  I was glad I could be a help to the staff there. Lydia, Meri, Britt, Beth, Chandra, Pawel and others are all like a family to me. I’d gladly spend more time at the office than sitting around at home! I did simple things such as fold brochures, set up the room for group, make copies, clean up after group, and yet I was always thanked with so much enthusiasm.  It was nice to finally have something to do and I actually felt useful for the first time in a long while.

The main way PPAL has helped me is the support they have given me. I was able to pick myself back up thanks to the support I got from PPAL and Youth M.O.V.E.  I never could’ve accomplished so much without knowing that they were right there cheering me on.  Also, another important fact is they provided a place to go to get out of my house.  So to those whom it may concern, I do not go to the group for the pizza. I don’t even really like pizza. I go to see the family I have made there.

Ally C is an 8th grade student from Worcester, MA. She has been writing since a young age. Some of her hobbies include writing poetry and drawing. This is her first blog for PPAL.

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