Tag Archives: support group

Is it a support, education, leadership, networking or advocacy group?

December 26th, 2018

June came over to me and announced, “I think you should start a support group.”  I looked at her, thinking, “Me? Are you out of your mind?  I don’t have any qualifications for this.” She continued on, “You’ve been to support groups, right? And you’re a leader.  That’s all you need.”  I mumbled that I’d think about it, hoping she’d simply forget it.  She didn’t.  She was PPAL’s first director, trying to grow the organization, creating new groups throughout the state.  I looked like a pretty good prospect.

A few weeks later, I found myself in a room with 8 or 9 other parents, who all assumed I knew what I was doing.  I was excited at the turnout, feeling like an imposter but determined I’d make the time we spent worthwhile.  It turned out the group was that rare combination of valuable and enjoyable, that night and many, many nights to come.

Although we called ourselves a parent support group, it was much more.  We had only three “rules,” one around privacy (what’s said in the group, stays in the group), one around blaming (no blaming, especially not yourself) and one on ownership (the group belongs entirely to the group).  Because of rule #3, group members became very proactive.  They scolded one another when someone said their child’s behavior or illness was all their fault.  They’d point out that you can’t find solutions when you are blaming yourself, or someone else.  They’d come with resources and new ideas for people they’d met the time before. They cared about labels and words and how we spoke about our children and families.

Someone would point out regularly that the group was about more than support. It was advocacy, problem solving, education, outreach, stigma busting and trying to change the way systems treated our children and us.  “Calling it a support group,” one mom used to say, “sounds more like a pity party than what we really are.”  Whatever we called it, it continued on for years, adding new members and saying goodbye to others as their children became adults.  Since then, the rules have grown for support groups, but what parents need from them has stayed the same.

Originally, support groups were never intended to be a service.  They were a place where people learned from one another, not just the how-to’s and the go-to’s but emotional learning.  Anger was shared and so was grief and we learned that they were okay, everyone felt them push insistently into our day no matter how we pushed them back down.  Sometimes you let those feelings flood you and then you’d release them (at least a little) and other times you learn to harness them and use them to make changes or challenges barriers.

Support groups were a place where leaders were born and then nurtured.  Someone would develop expertise, hard won almost always, in special education or insurance advocacy or navigating the courts and they would teach and lead others to success.  Someone else would be a little further along in their emotional journey and learn how to change minds with their story or create change with their advocacy.  Another would know where the resources were, such as a resale shop so your child’s expenses didn’t break the bank this week or a community class where your child would be welcome.

I never thought I would be a leader but I took it on.  I shared my experiences and was nakedly honest about my failures as well as my successes. A group member would say, “I never thought I could say that in a school meeting.”  Another person would muse, “I never thought of it that way.”  Maybe the best comment of all was, “When you said that, it must have changed the meeting.” A good leader has to be vulnerable as well as strong, I found, and a perpetual learner.  There is practically no chance we can ever learn everything we need to know.

Originally support groups were created to connect with families, connect families to one another and nurture parent leaders.  To make leaders, to encourage people to go forward, they need a safe spot to come back to, to tell their story and received cheers or sympathy.  They need others to have their backs and simply care.  Sometimes they need to regroup and brainstorm for the next step.

Social media has impacted both support and support groups and created new language as well.  There are threads on Twitter, where patient advocates take cutting edge medical or psychiatric information and get it out to people who have few other ways to access it.  (Who among us subscribes to medical journals?) There are Facebook pages with varying degrees of privacy and varying levels of member screening.  You might, for instance, find the person liking your post is not another parent after all.  People with similar diagnoses or problems to solve meet online, private message, email, face time, Skype, watch YouTube videos and blog.  Their goals may range from sharing information to sharing strategies.  They may offer support or mentoring. Like everything on the internet, you can access amazing and invaluable information or support or find the quality not worth your time.

About 3-1/2 years ago, I was at a health bloggers conference and met Susannah Fox, an advocate and scholar of peer-to-peer health care and a former chief technology officer of the U.S. Department of Health and Human Services.  She writes that one in four people in America receives information or counsel from someone with a similar condition, often online. “Few of us,” she writes, “can read everything about our condition. Those who have gone before us can help sift through the mountain of information for what’s most useful.” She is a strong proponent for patient advocacy or peer-to-peer healthcare and posits that we are in the midst of an online health revolution.

If June were to come over to me today, would she ask me to start an online support group?  Or maybe a series of videos or a chat platform? I wonder if it would be the same.

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Everyone needs a posse of parent warriors

April 23rd, 2017

Somehow, you can never escape the influence of your mother.  Yet, sometimes you don’t see it for a long while, especially if it shows up in a different context.  Often, in fact, both the influencing and not-seeing can be a very good thing.

My mother believed in the solace and wisdom of other women, especially other mothers.  She grew up in a generation where woman shared secrets-that-weren’t-secrets only with each other, like whether you colored or permed your hair.  Women always went to the ladies room in twos or more in public places and spoke in low voices about “women’s problems.”  She had a group of women friends, kind of a posse, who knew each other for a long time.  Among this group, if there were child-rearing, marital, drinking, health or other issues, those too were shared and kept quiet about.  Besides this group, her sisters were her most precious resource, keeping family connections and, sometimes family secrets, intact.

Although I thought it was silly and even wrong, this secret keeping cast its shadow for a long while.  I was uncomfortable talking about things that were personal, claiming that respect for privacy was the only thing that motivated me.  Once, I came down to breakfast in my college dorm, to find two friends arguing hotly about the merits of Clairol versus L’Oreal hair color.  I put down my food and was quiet for a while, not joining in, not knowing why.

But I believed in the importance of a posse, a group that you could trust and seek out for their knowledge and comfort.  I believed in the value of other mothers.

Then my older son got sick.  He was only in first grade when we emotionally fell off a cliff.  He went from being an anxious child to one who was hurting himself in a few short months.  There was no mistaking that we were the family dealing with significant mental health issues.  Some of my friends drifted away, others stayed but were bewildered.  Still others offered help, advice, a listening ear and most of all the knowledge that whatever I shared, our privacy would be respected.  I found I needed that, because it gave me some space to try and understand how my life was changing and search for a new equilibrium.  It wasn’t secret keeping exactly, but my close friends closed ranks and I felt a little safer, more protected.

I needed that feeling of safety, trust and comfort the first couple of years of my son’s illness.  Like many parents whose children have mental health issues, my life often felt like it was in freefall.  If we planned an outing, it was tentative, making sure my son was okay minutes before we left, so that he could manage without being overwhelmed.  If not, we changed our plans. Heck, if I planned a meal, I never quite knew if we could make it through the entire thing or if there would be a meltdown.  Uncertainty became my daily companion.  Sometimes there were good stretches but there were lots of time when the school would call, his meds would suddenly stop working or he’d develop new fears, obsessions or even frightening behaviors.  I alternated between changing my battle plan to throwing my hands up in surrender.  There were few spaces where I felt like someone had my back.

Then one day came when I started talking about my son’s struggles as well as my own experiences complete with triumphs and disasters.  First I talked at a support group I attended and later in a support group I ran.  Other parents commiserated, cheered me on and never judged.  We would often continue our conversations in the parking lot, treasuring the sharing.  One mom, Theresa, had a son with a mood disorder, who was also using substances.  He was unpredictable and sometimes stole cash from her wallet.  She’d been widowed a few years before, about the same time her son began showing symptoms of bipolar disorder.  Her family thought she’d indulged him too much after losing his dad and that she should have thrown off her own grief earlier.  Theresa would come into the group and pour out her heart and her shoulders would relax, her face would open up and she’d feel the power of the posse. Dave, whose son had ADHD and was going through a difficult divorce, would come week after week, not saying much, but listening hard, nodding often and brought little bakery gifts.  It was his posse, too.

Motivational speaker Jim Rohn says, “You are the average of the five people you spend the most time with.”  Sometimes that’s family, but often it’s your group of friends. Your posse can have a big influence on how you feel, what you think and even what steps you take.  The people in it can support you and believe in you, but they can also shake their heads at you and nudge you in a different direction.  It’s not a rubber stamp, letting you off the hook.

Today my posse is filled with parent warriors.  They are advocates and influencers, passionate and strong.  They give me support, challenge me and believe that we can make a difference in children’s mental health for our families and lots of others.  I believe in them, too, and am sure they are right.

My son is an adult now, still dealing (mostly successfully) with his mental health symptoms and he’s doing okay.  But that wouldn’t be true without years of advocacy on my part and the part of others.  I wouldn’t have been able to push, to share my stories publicly and keep going without my posse of parent warriors.  Nobody does this alone.  My mom was right about that.

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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.

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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.

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New Year’s letter to my support group

January 2nd, 2012

For many of us, the end of one year and start of another is a time to evaluate our life and to identify things we want to change. Maybe we have made resolutions such as, “This year I am going to stick to that diet!”  These resolutions can be hard to keep, as our very demanding lives compete for our attention.

For parents of special needs children, this can be a difficult time. Often the previous year is something we would rather forget. When things are going well, it can be scary just to exhale, as the anticipated disappointment can be too much to bear. When your most heartfelt wish is that your child makes a friend, making wishes can be difficult because so much seems out of your control. Setting a goal can seem like a waste of time when everything seems so uncertain. Making resolutions can feel self centered as you think, “Don’t good parents always put their children first?”  Yet, how many times have we heard the analogy about parents on an airplane? In an emergency, we are told, we must secure our own oxygen masks first. The message is that we can’t take care of our children if we don’t take care of ourselves first. Easier said than done!

A friend of mine who is an author writes about spirituality and self exploration. She wrote:

One of my annual tools is to pick a word-of-the-year in early January, and explore it for the next twelve months. By the end of the year I hope to be able to sum up my findings in one short sentence that rings true for my particular essence. Last year I found that Gratefulness produces abundance. The year before I found that modern day Humility is voluntary simplicity. These findings are now part of my DNA, as is anything you sit with for an extended period.  R.M. Allen

She picks a word that scares her a little, and lists the reasons it scares her. I like this idea a lot. It’s a way to spend time working on me without taking time away from other obligations. I can think about my word when stuck in traffic or doing the dishes. Maybe I will post the word next to my bed or in my medicine cabinet, so I don’t forget. 

My wish for all of you is that you know, down to your DNA, that your best is all you can do. That you can let go of some of the guilt that you may be carrying around, and that you are able to exhale from time to time. I wish you and your family a very happy and peaceful new year.

Nancy Collier is our guest blogger.  She is a Family Support Specialist north of Boston where she supports families as well as providing them with information and resources.  On her days off, she plays with her grandchildren and walks the beach near her home.

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