Tag Archives: families

7 tips from a support group fan

January 23rd, 2017

Okay, I’ll admit it.  I’m a support group fan.  I think groups can do lots of things all rolled up in one place – support (of course) and hearing about resources you never knew were there.  But other things, too, like receiving high fives for getting through a tough school meeting or finding shortcuts to strategies you need.  Through it all, you know you aren’t alone.

So what’s the draw in this age of social media?  Online, we can congregate, stay in our sweats or PJs and never leave the house.  It has to be worth it to venture out.

I started out as a support group member.  My son was seven, having meltdowns three or four times each day and I was overwhelmed and fresh out of ideas. I was running to appointments, talking to the school every day.  Regular errands, like going to a grocery store were a surefire way to add in more fireworks, turning a half hour task into 90 minutes or more.  When I looked in the mirror I saw someone who was discouraged and depleted.  She needed help.

I had my own therapist, as did my sons, and they were great.  But they hadn’t lived what I was living.  They didn’t know the mixture of dread, fear, sadness, anger, guilt and exhaustion I lived through each day.  I went looking for someone like me.

I didn’t find her. Instead, I found another mother who was just as overwhelmed and depressed but had great ideas on how to fit in some mental health breaks during the day.  I found parents whose children had a range of special needs and they had a menu of strategies for success with their insurers and their schools.  I heard about books to read, movies to watch and experts to seek out.  I met people who reminded me to laugh. Evem better. they were all in one group. My knowledge increased and what’s more, I learned to see value in the little successes and try out new ideas – often ideas I hadn’t had myself.

We moved a year and a half later and it was brutal losing that group.

Not long after, someone asked, “Why don’t you start your own group?  You’ve been a group member,” she said.  “It will be a piece of cake.”  Not knowing what I was getting into, I said yes.

The first meeting seven people showed up.  They weren’t sure why they decided to come and I wasn’t sure what I could offer.  At the end of two hours we were laughing, sharing stories, eating food and rooting for each other.  We were all parents who had children with emotional and mental health issues, some with diagnoses, some without.  By the end of the second month, people were talking and meeting outside the group.  By the end of six months, they were going to hospital and school meetings with each other.  One mom broke her ankle just before Christmas and another went shopping with her, carrying bags she couldn’t manage on her crutches.  “It’s not even my holiday, the other mom told the group. “I’m Jewish.”

Every support group has a kind of individual chemistry and a lot of that comes from the facilitator.  If you are kind and compassionate, your support group will be too.  If you like rules, it will be orderly and if you like laughter, people will share their humor.  If you are curious, hopeful, determined, accepting and friendly, those qualities will show up.

Although we had a short list of group “rules” two were repeated often by group members.  They were, “what’s said in the group stays in the group” and “no blaming.”  A third rule – the group belongs to the group – was taken as a given.

One mom, Mary, would come to the group regularly with her husband.  She had a teenage son with bipolar disorder and told us he got it from her.  She felt so guilty, she said, that she passed on the bipolar.  Another group member put a stop to that.  “There is no blaming here, not even blaming yourself.”  Once Mary came and was frazzled, spoke rapidly and had difficulty staying still.  “I’m off my meds, she told us.  “I’m worried I might be pregnant and I don’t want to take a chance my psych meds could hurt a child.”  She couldn’t afford a pregnancy test until the next paycheck.  Another group member grabbed her car keys, ran to the local Walgreens and bought a test.  She and Mary disappeared, then came back with the results, which were negative.  Mary promised to start her meds again that night – she did – and group members called to be sure she was back on track.  She was supported and directed but never judged.

Tell me, can you do all that online?

Another member, Maureen, found a way to make us laugh no matter how dire things got in her life.  Her nine year old son had tried to jump out a classroom window.  Instead of agreeing that he needed special education, the school system moved his class to the first floor, so he wouldn’t have far to fall.  Her son also saw things that weren’t there.  One day, she told us, he ran to her and said there was a man in his room and the man was jumping on his bed.  “Honey, she responded, “I should be so lucky.”

I began a second group a few months later and both lasted for seven years, until I began a new job and couldn’t do it anymore.  It was even harder leaving those groups than it was my first one.  Each meeting was like watching a soap opera or a reality show and I would be drawn in, rooting for people, holding my breath at other times.  I was left wondering what happened next to everyone.  Occasionally, I would hear a snippet, get an email or connect with someone online.  Considering what they had braved, most everyone was doing pretty well.  They certainly deserved it.

I’ve thought a lot about what makes a group work, because when it does, there is nothing like it.  Here are my top 7 tips.

1.  Create a community, not a group. Groups have a set time, specific rules and guidelines.  While those are important, they don’t make a group successful.  When members feel like this is their community, things take off.   Communities are built on a sense of belonging, shared experiences and knowing what you can expect from each other.

2. Share the emotional connection. The members of the group will come looking for someone just like her, or him.  Like me, they won’t find it.  But their experiences will echo one another’s.  In one group, a mom described her son’s intense depression and how isolated he was.  “At least he doesn’t use drugs,” she said.  The next mom said, “My son uses,” and went on to describe his isolation and how it tore her heart.  They connected that night and sat next to one another for the next several meetings.

3. Emotional safety is essential. Parents live with chaos at home and frequent unpredictable behaviors. When a group has group rules, a lack of judgement, a commitment to honesty, clear boundaries around confidentiality, members can breathe.   Sometimes you don’t get all the rules right, though.  I was terrible at ending on time, often finishing a conversation in the parking lot.

4. The facilitator must have personal experience raising a child with emotional and mental health challenges. Some experience with support groups is pretty important, too, as facilitator training alone doesn’t do the trick.  Culture matters a lot as well especially when groups draw from communities that are diverse.  Remember, the facilitator is not the authority, but should be the catalyst for creating a community.

5. Foster networking and mutual support.  Parents often feel pretty alone.  They are like Atlas holding up the sky, not able to let go of the responsibility.  Groups work when the group doesn’t just support the members, but the members support one another.  I knew one group leader who did a lot of one-to-one work with parents.  When she formed a group, the members tried to continue their individual relationships with her, instead of forming new ones with each other.  It didn’t work out very well. Some group members will cook for the group, make calls, form carpools or even advocate for one another.  It’s their group so they know what works.

6. Continue to grow the group. Group members come and go, but if you’re lucky you have a mix of long time members and newer ones. It’s hard for parents to locate groups, so facilitators have to get creative when marketing.  I took a lot of calls from parents before they ever stepped into a meeting.  They’d say, “Do you think I’ll fit in?” “Do I have to talk?”  Facilitators have to reach out – often by phone – before meetings, afterward and in between.  Connection fosters community.

7. Nurture future leaders. When you run a group, everyone at the group watches you.  It can be unnerving at times, but this is how we all learn.  When someone offers good advice or brings in a new resource, sit back and smile.  They might be doing this too someday.  We’ll need them.

Tags: , , , ,

Posted in Blog Posts | 2 Comments »

Staying quiet

August 14th, 2016

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

Tags: , , ,

Posted in Blog Posts | 7 Comments »

Slapped by stigma

May 9th, 2016

pointingHave you ever been slapped in the face by someone’s prejudiced thinking about mental health needs?  That’s called stigma.  It first happened to me when my son was seven.

My son spent a lot of his 7th birthday party lying on the floor at Chuck E Cheese crying and saying, “I don’t deserve to live – I want to die.”  Like his friends, he would race excitedly from game to game, then run back to me to say, “Guess what I won?”  Then his mood would plummet and I’d see him drop to the floor, disconsolate.  His friends would stop next to him and try to cheer him. Not long after, he had his first inpatient stay.

A year before, we had moved into a newly built housing tract.  The school district was good, the neighborhoods were designed with curving streets and cul-de-sacs, which made them perfect for families with young children who rode their bikes and skateboards.  All the houses around us seemed to be filled with kids the same ages as my two sons and they were soon traveling as a posse to one another’s houses to play with this game or try out that swing set.  Families invited each other to parties and outdoor barbeques.

After my son’s hospitalization (which lasted nearly a month) he insisted on going to each of his friends’ houses to let them know he was home and available to play.  I asked him what he was going to say.  “They told me at the hospital that lots of kids go to the hospital to have an operation or because they are sick,” he said.  “It’s just like that, except it’s your feelings. It’s okay to talk about it.” I felt that little clutch in my stomach that mothers get when they worry.  But what did I know?  This was a new world for us and if the “experts” told my son it was okay to talk about his hospitalization, then I was going to defer to them.

He set out on his neighborhood journey, going from house to house while I stood a little distance behind him.  He did great, shaky a few times but was met with smiles and nods for the most part.

Not long after we got back home, I got a call from Denise’s mother.  Denise was doted on by her parents and had been born some years after her older brother. They lived cater corner across from us and she played often with my son.  Denise was perfectly dressed, her blonde hair done up in dozens of new ways each week.  Denise’s mother was not all smiles and nods on the phone.  She told me that although she felt sorry for my son, Denise was not allowed to ever play with him again.  If he came to the door, he would be turned away.  If he called, the phone would be hung up.  If he was playing in their neighborhood group, Denise would not be allowed to join in.  In fact, she added, she would appreciate it if I told him when he walked in front of their house to please use the sidewalk on the other side of the street.   The rejection couldn’t have been more complete.

I told my son a gentler, highly-edited version of the conversation and it’s something he doesn’t remember today.  But I do.  My judgemental neighbor went from embracing we-are-all-raising-our-kids-together to making it very clear that there were two groups now, “us” and “them.”

Many people believe that there is less stigma today around mental illness, treatment and even psychiatric medications.  They point to the growing number of stories that people like me tell of their own experiences, or that people with their own lived experiences relate.  These stories don’t just provide a name and face, but details about what works and how it feels to experience the slings and arrows of a very tough mental health system.   But an experience with in-your-face stigma changes you.  You lose patience with slow change. You can’t go back to thinking that it’s lack of education or inherited attitudes.  It’s more than that.  Stigma is an ugly thing.

Researchers say stigma is a term “which has evaded a clear, operational definition.”  It actually has three parts:  lack of knowledge (ignorance), negative attitudes (prejudice) and excluding behaviors (discrimination).  Like many others, my son and I have experienced all three.

Stigma is not just carelessly using words like crazy or psycho. It’s shunning like my son and my family experienced.  One mom told me recently that her child was ostracized by her ex-husband’s entire family, who wished to hide her son’s mental health needs.  It’s seeing your child shunted to the psych evaluation room from the emergency room as soon as they hear the mental health diagnosis.  Another mom recently wrote, that even though her daughter overdosed on pills and was violently ill in the emergency room, “they stuck her in a psych room with a security guard” because they “thought she was faking it.” It’s being denied opportunities like the parent who told me she had to choose between a therapeutic school with a stripped down curriculum, or an academically challenging one with no therapeutic supports for her brilliant, beautiful daughter with extreme mood swings.

The hurt caused by an experience with stigma stays with you for a long time.  You feel a little more mistrustful, a little more righteous anger and have warring impulses between disbelief and cynicism.  I’m hurt, you feel; this is unjust, you think; this must stop, you realize.  We need to keep telling those stories, we need to keep waging our awareness campaigns but we need something more.  We need warriors.

 

Tags: , ,

Posted in Blog Posts | 5 Comments »

Ask me a question, I’ll tell you a story

April 4th, 2016

tell your story 2I felt a wrench in my heart when I stopped running support groups.  It wasn’t the late nights or trying to make each one worthwhile.  It wasn’t even that I had some version of burnout (I didn’t).  It was missing out on the next installment of everyone’s story.  I knew by then that even the parents who seemed to have things under control were often living a version of Mr. Toad’s Wild Ride.

There was Joe, who worked in construction and got up in the dark every morning, yet drove around several nights each week trying to find his 15 year old son.  He knew his son was using a variety of drugs and he also knew if he could keep him safe for a few more weeks, there would be a slot in a program for him.  There was Annabelle whose son, Bobby, tried to jump out of 2nd story school window when he was 9.  She fought to get him in a therapeutic program and when she finally did, her own mental health problems surged up.  There were Rick and Susan, who problem solved like crazy to make sure their daughter graduated high school.  She would only eat one kind of pizza, sold several towns away, so they would drive those miles several times each week to avert the obsessive, restrictive food focus that bled into other parts of her life.

I wondered if Joe’s son got into the program and if it helped.  I worried that Annabelle was so exhausted from fighting for services and wellness for her son that she had no energy left to battle for herself.  I fervently hoped that Rick and Susan – who did so much to get that diploma – got their daughter into a college and that she stayed enrolled.  And I wondered if they all thought about my story and my son’s journey, too.

Support groups are ground zero for telling your story.  There is no wrong way to share it.  You can make it short and hit the high points.  You can ramble, cry, smile and pick up the thread.  You can tell it all at once or in installments.  Others will nod, maybe comment or offer help and you know they are your comrades in arms, fighting the good fight with you.

Talking about your experiences in a support group can be therapeutic.  Others can see where you sailed through and where you were flying by the seat of your pants.  They might jump in and point you to resources you need or suggest strategies you haven’t thought of.  You learn what parts of your story make others sit up and nod and what parts don’t get the same reaction.  While you are getting help, you are also learning to tell your story.

For many of us, there comes a time when you decide to tell your story publicly to someone else.  Maybe it’s a journalist, maybe it’s a legislator, maybe it’s an audience of people who’ve never raised a child with mental health needs.  You want them to understand, to be moved, to feel the injustice, the hurt and the determination to make things better.  You are willing to forgo your privacy and expose your pain in order to help the families coming along behind you.  You want to make a difference.

Storytelling is one of the most powerful tools we have.  It is the medium for translating emotions and experiences into action.  Personal stories can educate about challenges and inspire people to do something about them.  Leaders often call great stories “inspiring” while journalists call them “compelling.”   But most of us have to learn key storytelling skills.  We start by knowing we have a story to tell and it deserves to be told well.

When you tell your story in a more public way, you consider other things as well.  Your time (or print space) is limited, so you focus on what aspect you’d like to tell.  If you want to make a point about lack of services or too-high-to-jump-over barriers, you think of what would be most dramatic things to highlight.  Sometimes you choose the parts that are most likely to help the families coming along behind you.   As Patricia Miles writes, this is the first skill set of family partners: the decision to blend their private story with their public role.

Telling your story isn’t only about touching people or creating change in the system that serves our kids and families.  Just as the stories from Joe and Annabelle and Rick and Susan stayed with me, our stories stay with the people who hear them.  After someone hears a parent tell their story, I am often asked – sometimes a year later – what happened to that youth or those parents?  Did the young person get better or achieve their promise?  Did the parents leave those times of crisis behind and become able to step back a little?  Or if I was the one who told my own story they ask, How is your son doing?  We often have no idea who remembers us and who is rooting for us.  And that’s actually pretty cool.

Change, they say, happens one person at a time.  Just like storytelling.

Tags: , , , , , ,

Posted in Blog Posts | 2 Comments »

My sibling journey, my parent journey

June 21st, 2015

WelcomeHomeGrowing up with siblings was an important piece of my life. I remember knowing how to get my older brother in trouble, how to make sure that my grandmother would comfort me when I pretended the others were mean. I also remember those responsibilities as the middle child– help the little ones, get their shoes, help them get their lunch and make sure they get to school safe. Having siblings or being an only child, being oldest, youngest or in the middle influences us. Our childhood journey affects us as we grow.

I often think of this as a parent now. I see how my own children have their individual journeys as they grow up. Each one is different — the oldest, the middle and the baby. It feels a bit more complicated when you enter the world with some special needs in your life, maybe even more when you are the one that is right in the middle. I remember the dynamics for me as a child, as a teen and then as an adult with my relationships with my four siblings. You start seeing the “role” you played, you understand who they see you as and notice which ones you are close to. And you also notice the one that you are not close to. We call this the family journey in the world but we can also see it as the sibling journey or the parent journey. Or even the “identified young person’s” path.

It hit home for me when my oldest was hospitalized in a psychiatric hospital. My other son looked at me and said, “Mom, I hate the windows that they have on the doors, and I really hate the sound of those keys locking the door when we say goodbye.” He also would look at me when we went into the supermarket, or local pharmacy and would say, “Mom, remember the code word is Ocean- if my siblings are acting out and I want to take space I will use it in a sentence. Okay?”. Other people call these our coping strategies. For my family it was the survival and reality of our journey.

My sister and I did the same thing growing up. We had a code if she needed me to be by her side. She knew that she could call anytime and in my early college years, I would come home and pick her up. It was the “message” to get that break from your own sibling journey. I remember using something similar with my grandparents when I needed that one-on-one time. The give and take and the family relationships were as important and often just as crucial as food.

Barry López explains that, “Everything is held together with stories. That is all that is holding us together, stories and compassion.” In Crow and Weasel, he writes:

The stories people tell
have a way of taking care of them.
If stories come to you, care for them.
And learn to give them away
where they are needed.
Sometimes a person needs a story
more than food to stay alive.
That is why we put stories
in each other’s memory.
This is how people care for themselves.

Barry López, Crow and Weasel

He understands that listening to others’ stories is crucial for survival. Sometimes I tell my story to others, and sometimes they hear it just by knowing me and my children. As an adult, I have often needed certain things in my life as a parent: a parent network that understands the chapters of my life, the local pharmacist that gets the cue that we need to get out soon, the grocery store clerk who would open up an extra lane so we can pass through, or even the gas station that would allow me to use the bench for time out. As a child and sibling I loved to make sure that I could have time just getting away, being a leader at the bus stop to make sure we all got along, and knowing that on Friday mom would make that Italian homemade pizza.

All these things are part of my story and part of my journey. We all have our journey. To listen is the most important part and to understand feels really good.

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 | 2 Comments »