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Her story changed everything

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.

 

My adoption, my mental health and my community support network

I was an African American child adopted by a white mother and there were several things that came up for me in my childhood.  They were things that a biological child may not have had to deal with. Some were easy to see and identify like the color of my skin versus the color of the rest of the family’s skin. Others were not so easy to identify.

I remember at one doctor’s visit they asked if there was a family history of cancer, diabetes, or any other health issues. I had to say “I don’t know, I’m adopted.” That meant that the doctors were unable to see a complete picture of my health in order to provide me the best healthcare possible. That also meant that extra tests were important so any issues could be identified and would be caught.

Of course, I had the same experience with mental health questions.  When I visited a psychiatrist’s office they would ask me questions like, “Is there a history of mental illness in your family?” Once again I would have to answer “I don’t know, I’m adopted.” That meant that the mental health providers were also unable to see a complete picture of my mental health without a lot of testing.  Which is what we did.

I remember having a lot of different kinds of tests and assessments, and many were just to rule different things out.

Some issues are more common to people who have been adopted. Some of the most common (but not only) issues that adopted people face are based around trauma and separation. PTSD  can be one issue, as well as reactive attachment disorder, both of which can affect someone in variety of ways.  Being aware of and sensitive to these common issues is critical as they can have direct and long lasting impacts on your loved one and your family.

Besides the impact that adoption can have on an individual, it is also important to recognize the impact adoption can have on other family members such as siblings and even parents. Providing the proper supports for all family members is truly important.

We were really helped by several agencies and organizations dedicated to bringing awareness to and support for families involved in adoption.  My mother found an organization that provided support for single parents who have or were thinking of adopting a child. This became a support network for my family and they did more than just support us emotionally. They provided my mother with a chance to network with other parents experiencing similar struggles, attend informational seminars and workshops and share resources and learn about available local and national resources.  More than that, it provided us with a real sense of community. I remember spending holidays with the same (for the most part) group of kids and families. I remember going on vacations with these other families, building lasting and deeply felt friendships and connections (many of which last to this day). These experiences came to me only through this organization.

My mother was a driving force in the quest to better understand and support my mental health. She knew it was important that she take charge of my mental health care and continuously advocate for all of the needed tests and assessments.  She pulled things together to provide me with the support I needed so I could be the best me possible.

My mother did a lot of research on mental health and behavioral health, attended support groups and became involved in a support network of other parents raising kids with mental/behavioral health concerns. They shared information, resources, tactics and strategies and told each other what worked or didn’t work. They shared stories of struggles, failures and frustrations, but they also shared stories of success, joy and hope. They supported each other, through both good times and the difficult times.

All of this was vital to help supporting me both in terms of my emotional well being and accessing the best education possible. I went to public school most of my childhood but there were a couple of times when it was suggested that I attend a school with more emotional and academic support. I only had access to these schools and programs because of my mother’s push to identify and treat unknown mental/behavioral health concerns, and advocate for me to get a proper and appropriate education.

By becoming involved with a community of people who were experiencing similar struggles, we had support and the chance to interact with others in a nonjudgmental environment. We had the opportunity for sharing and learning about resources and mental health care system navigation. Navigating the mental healthcare system can be daunting and frustrating but my mother learned early on that if she didn’t advocate strongly for my mental health care and education, nobody else would.

Josh Schram is our guest blogger.  He is the proud parent of two children who have each experienced mental health and/or behavioral concerns at different times in their lives. Josh was adopted by a single parent and enjoys using his past experiences to help other families in need of support and direction.