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.