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Her story changed everything

March 27th, 2017

I first met Linette because of her urgent phone call.  While waiting with her daughter for a psychiatric bed, caring for her other child and staying in touch with her office, she was calling, emailing and messaging anyone she thought could help.  Most didn’t get back to her.  I did.

Her young daughter was waiting for an available bed and had been waiting for more than a week.  We talked a bunch of times.  We made calls and sent emails.  We strategized about people to speak to, steps to take and stones to turn over.  Then Linette kicked it up a notch.  She went to the state house and talked to legislators.  She called state agency heads. She told her story again and again, insisting people listen.  They did and, after 3 anguishing weeks, her daughter finally got into a psychiatric bed and later into another program.

Linette and I both breathed a sigh of relief.  I think we both knew, however, that there would be more moments of crisis and an ongoing need for advocacy in her daughter’s future. This is what happens when a mom tries to get her child’s intensive needs addressed by a wobbly, deficient system.

Linette learned that one of the best tools she had was her story.

Today we have a nice, succinct term for Linette’s experience.  We call it “boarding” which is defined as waiting in emergency rooms and other areas for an inpatient bed. But just because we have a simple, snappy term doesn’t change the experience.  It doesn’t capture it either.  It’s a heartbreaking, exhausting and discouraging thing to go through and it happens to families across the country almost every day.  It can change a parent.  It can certainly change how you view the system that’s supposed to help your child.

Over the next couple of years, Linette and her daughter went through enough obstacles, barriers and bumps in the road to make it abundantly clear that, while there might be well-meaning people in it, the child serving system wasn’t helpful or benevolent.  She battled for funding, for eligibility, for services and for slots in programs.  Linette learned the jargon and became an even savvier strategist.  She told her story again and again.  That and her advocacy changed things for her daughter.

She found other parents online and in person.  Some had hard-won wisdom to pass on; others needed to learn skills and knowledge from her.  She encouraged them to tell their stories, too, not just to help their own children but to repair and remake a set of services and treatments earmarked for kids but often inaccessible and sometimes downright unfriendly to families.

Linette never said “no” when asked to tell her story.  She has told her story to national magazines, and on national television news.  She can talk about the financial hits that families take when their child has mental health needs because that’s happened to her.  She can talk about the stigma parents experience because she’s had it happen to her, too.  She can talk about the advocacy, the persistence and the smarts it takes to get your child treatment, because she knows it’s a fact.  She can also tell you that the heartbreak never completely goes away, because it doesn’t.

Last week, Congressman Joe Kennedy told Linette’s story to Congress.  He said that families like hers needed more than “the cheap luck of a broken system.”  Linette had walked into his office not long ago and told her story.  This time it was not to get her daughter a needed service, this time it was to change things for families like her.  She keeps telling it, hoping it won’t be representative of lots of family stories in the near future or any future.  She’s waiting for that day.

Telling your story changes you.  You begin from a place of pain and disbelief.  You become determined.  You become strong, you become unrelenting, you become strategic.  You fight for the personal – treatment for your child and access to services for your family.  Your story is rooted in what you want to say.

Along the way, you meet others doing the same thing for their child and their family.  You realize the fight is bigger than you.  You realize that others are your comrades and fellow warriors.  The intent of your story changes too.  Now you are focused on how your story can change things.  Now you are focused on what you want others to hear.  You want them to be galvanized and a warrior too.

Linette’s story has changed a lot of minds.  Some of them are decision makers, like state legislators and Congressmen. Some of them are the people who work with her daughter and her family.  Many she will never know.  But they’ve read part of her story in an interview or saw it on a news story.  Or they watched the video last week that helped keep health care in place for children like her daughter.  She’s a difference maker and we need more of them, Lots more of 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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