Category: Stories from the Trenches

The Struggle For Love – How it All Began

I remember waiting in line to pick up my son from school and messaging back and forth with my husband. I was on a mission to convince him that we REALLY needed to adopt a child. Not just any child, my heart wanted a baby girl. We had 2 beautiful boys already, but I was getting older (good grief, I was only 26) and time was running out! I was so impatient because anytime I got an idea, I was all in and it needed to happen right now, or I could possibly explode! I was filled with butterflies and so much nervousness that he would say no, but I really needed him to say yes! I am not sure what was causing me more anxiety; the possibility of him saying no and needing to reformulate my approach to convince him to say yes, or the idea of adopting a baby. I was so close to him saying yes but he hadn’t officially said yes. 

He had lots of questions that I didn’t have answers to, and I think he honestly was content with me staying at home with our boys. We had a beautiful home; he was happy with only 2 kids and he loved the consistency that we had built. Our boys were 3 and 5 and full of energy, anything trains and loved doing everything with their dad. My oldest was a tiger in the cub scouts, my husband was a leader and our littlest tagged along as an honorary tiger. Unfortunately, this all felt slightly boring to me and I was ready to toss predictability out the window for adoption. 

I had absolutely no idea how much it would cost, how long it would take or where or who to call? All these questions flooded my mind as I was waiting in line to pick up my son from Kindergarten. While I waited. I searched my phone and found the name of an adoption agency and guess what! Not only was the agency in our city but I also somehow connected that “This must be the perfect one to call and God is arranging all of this just for us.” Recalling this is actually making me roll my eyes at myself and those foolish thoughts. By the time I got through the pickup line, I felt like I was walking on clouds because my husband said YES!! I couldn’t even believe he agreed so quickly, but I was so thankful because now I could fast track this whole process and adopt a baby in just a few months. Well, that is what I envisioned. 

We adopted our first daughter in 2011, which was 4 years after opening our home as foster parents and 5 years after my husband agreed to adoption. Our second daughter was adopted in 2012. There are so many things I wish I could go back and tell that 26-year-old version of myself. I am fairly certain I have a list a mile long that would save her from so much anxiety, grief and worry. If she would listen, I would tell her all of them. That younger version of me was a lot like Dorothy in The Wizard of Oz. Bursting of dreams for a perfect child, hopelessly clueless as to the reality of the foster care system and filled with so much love. 

I am fairly certain that we had so many children placed with us because I could find a solution to any hurdle the agency would present and I was endlessly accommodating. Our certifier knew that we wanted to adopt so with each phone call asking us to take another placement, there was a twinge of hope left with us that this could be long term or possibly permanent. I held my breath in anticipation with each new foster child that showed up to our home. Would they be “the one?” This anxiety rollercoaster can almost become addictive to someone who has a strong burning desire to make an addition to their forever family. I wonder if this is something that the agency knows?

After 10 years of being a foster parent, I finally saw that man behind the curtain. I am not sure why I didn’t see him there the entire time or maybe I did? Either way, in that single moment, all 10 years of belief and hope I had in the foster care system was completely shattered. I was able to see that we had fostered 77 children and yet only 2 were ever available for adoption. We never adopted a baby, nor did I have a baby ever placed with us for adoption. We stepped into foster care having no idea what we were walking into, not having anyone prepare us or shelter us. There is no manual or best course other than making mistakes and doing your very best. 

We learned that the foster care system is so completely overburdened and sometimes in order to find a bed for a child to sleep in, you may be allowed to believe that this child could someday become your own. I have seen it be a beautiful experience, I have seen it completely wreck families and I have seen a lot of in between. The foster care system is not a place to search for a child to adopt. Would they be “the one” now shatters my heart in shame. The naivety of not understanding that these children belong to someone else is truly embarrassing to me. We were blessed to find our forever child through fostering, but the intention of the system is to return children to their family of origin. Our blessed occasions were ultimately at the cost and destruction of other families. 

When we adopted, we didn’t understand how the long list of diagnosis’ and trauma would affect the girls, the boys, our family, our marriage, or, and let’s be honest, any of our mental health. Today, my life looks nothing like what I imagined adoption life would look or feel like. I say feel because it has encompassed emotions from the far reaches of happiness to the deepest level of grief. Both girls are approaching their teen years now and life is becoming more challenging as the complexities of their early childhood trauma, adolescence and demands of young adulthood set in. Both have Developmental Trauma Disorder with a diagnosis of Reactive Attachment Disorder. I use the word “challenging” because they are exceptionally smart, and I believe they know me better than I know myself. This makes most days hard because a calm and peaceful home for me doesn’t feel that way to them. They are incredibly creative, so they are never short on ways to make sure they feel comfortable. Which translates to: Mom is upset, stressed out or agitated. 

After losing half my hair from stress, suffering from severe anxiety and ptsd, I decided I needed to try parenting them differently.  I now let them learn from natural consequences and have let go (I am still such a work in progress) of my internal need to control and manage their behaviors. The more I have let go of trying to control them or their actions, the less anxiety I have. This is definitely not something that has been easy, in fact it is by far the hardest thing I have ever done in my life. I now see it as loving them the way Jesus loves us. He doesn’t step in and correct us directly. He lets us mess up, destroy or even blow up our own lives and then is there when we ask for help. The love he has for us is truly unconditional, it is Agape love. To see how unloveable I have been and God still loves me is how I strive to be for my girls each day. I have seen some minor shifts from them behaviorally, which makes me believe we are on the right track. Some Days are so much harder than others but I just keep moving forward, drinking a lot of coffee and praying. 

Someone suggested the other day that I stop the “natural consequences” approach and try spending more quality time with them instead. Take them to ice-cream or talk to them about how much they hurt my heart or how I would prefer they treat others. This is what most parents would do. This is how I parent my boys, but I think they had forgotten that I had already spent 10 years parenting them this way. What I know to be true over the years is the method of parenting the boys does not result in the same outcomes for the girls nor has helped them attach.  Even more deeply, I am not sure a child with trauma unique to their experiences, is capable of intrinsically being receptive to something they don’t feel the same way as children without trauma feel. What is it they don’t feel you might ask? It’s the feeling we develop that tells us we are worthy of being loved and gives us the capacity to love others.

Just to be perfectly honest, I don’t believe that either of them love the members of their family, nor have ever loved us. Each of them deeply struggles with their own acceptance of being good and worthwhile people.  While life is not a pity party, I don’t believe that they truly know what love is. How can they care for someone in a way that they don’t understand or feel inside themselves? While I had only suspected the incapacity for love at the time, I never wanted to believe it to be true.  Then, one day my husband asked one of our children if they loved me? The response was “that’s a really hard question and I’ll need to think about it.” This alone was enough to break my heart. Then, shortly after sharing the belief that they do love me, they proceeded to answer how they knew.  Their response came in the form of a story about a time when my husband and I went to Hawaii. They said, “One night when you and Mom were gone, I felt a little nervous before I fell asleep. That’s how I know I love mom.”  

Until next time,
Christine

Book Review | Me, The Boy, and the Monster

By Hannah Meadows

It’s hard to overstate how much I love this book. I had the joy of proofreading it for Cat (the author) in December and before I’d finished it I was telling my husband he needed to read it too. It’s one of those books that you just want everyone in your life to experience: family, friends, teachers… they all need a copy!

For me, Me, the Boy, and The Monster is up there with Sally Donovan’s legendary No Matter What in its practical, down-to-earth, reality-led perspective. Cat McGill is trained in psychology and really knows her stuff, and as an adoptive parent she is able to apply it in a meaningful way so you know she speaks from experience, not just theory. She gets it. But more than that, she lives it, just as we do. That’s what makes it so helpful. 

For example, I think most adoptive parents by necessity have a reasonable understanding of the amygdala and its function within the brain, but Cat brings our understanding of the brain to life in an accessible way, using Jane Evans’ analogies of the ‘meerkat brain’, ‘elephant brain’ and ‘monkey brain’. 

‘The Monster’ – Cat’s family’s label for her son’s trauma-fuelled behaviours –is a great way of personifying the problem and giving it an identity separate from her son, so that he isn’t viewed by others or himself as being to blame for responding to the trauma or things that trigger memories of it. This distinction is at the core of the book and is so incredibly helpful, particularly when conveying this necessary separation to family, friends, and teachers who need to understand.

I really think this should be on the shelf (or the Kindle) of every adopter, prospective adopter, post-adoption support worker, teacher… and so on. It deserves to be an adoption classic.

Get your copy of Me, the Boy, and The Monster here, and be sure to let Hannah and I know your thoughts!


Hannah helps fellow adoptive parents look after themselves and find the practical resources they need so that they are equipped to help their families thrive. She’s the adoptive mum of Joanna (10) and Charlotte (9), both of whom have additional needs. These include attachment disorders, PTSD, autism, ADHD and pFAS. Find her on social media @HLMeadows.

Navigating Reactive Attachment Disorder – And Succeeding!

Guest post by Gina Heumann

We knew something was off right away.

We had just traveled 2700 miles to pick up our second child in Guatemala – our second adoption from the same country. Our first baby, Landrey, was incredibly easy, so much so that my friends called him “The Stepford Child”. We were convinced his awesome behavior was due to our stellar parenting, so we assumed that new baby Maddox would be just as easy.

Ha!

We didn’t know the signs to look for back then and had never heard of attachment disorders. We chose Guatemala because we could get babies as young as 4 months, and assumed if there were any issues before we picked him up, we would be able to fix them with love and attention. Boy, were we mistaken!

From the beginning, Maddox was a fussy baby. He didn’t make eye contact and didn’t smile easily. In fact, we discovered as he got a little older that the only way to get a picture of him smiling was to have someone chase him while another person set up the camera and tried to capture him as he was running past.

He didn’t sleep. It seemed the planets had to align in order to get him down, and my husband spent several hours every night putting him to bed. For years. He awoke at least 4-5 times a night until he was eleven.

Even at 6 months old, the kid was DIVING across the table to grab our food. It was then (and after meeting his completely detached former foster mom) that I started to suspect he was neglected before we adopted him.

As he grew older, we started to experience intense meltdowns. Like REALLY intense. He could scream for four hours over something as silly as asking us to play a song again – on the radio. If we were unable to fulfill his requests, he would scream. And scream. And scream. And then throw things – whatever was within arms length, and when I figured out to keep items out of reach, he’d take off his shoes and throw them. As time went on, he would destroy property – TVs, computers, lamps, car windshields, you name it. If we put him in timeout in his room, he would throw the lamp, the table, even take pictures off the wall and smash them so that the floor was covered in glass. He’d throw things at me, punch holes in the door, pull my hair. At one point, he punched me in the face. At 3am. While I was sleeping. Because I took away his video games eight hours earlier.

We were at a loss. We tried therapy. In the beginning, they assumed it was a parenting issue and offered us behavioral charts, marbles, stickers. You know, the techniques that work for “regular” kids. All of them worked on my first son. NONE of them worked on Maddox.

Over time, we tried other types of therapy: individual therapy, group therapy, family therapy, in-home therapy (which is really weird – a therapist comes to your home and tries to be invisible while you go about your business and pretend he’s not there… then he interferes as necessary. So uncomfortable!) We took parenting classes. We tried homeopathy, neurofeedback, nutritionists, and even the Brain Balance program. 

He was eventually kicked out of school, sent in handcuffs to the Juvenile Assessment Center, appeared in court, and had to serve a summer of community service at the ripe old age of 12. That felt like rock bottom to me. 

I have never felt so helpless and alone in my whole life. Strangers in the grocery store witnessing a public meltdown would assume I was a terrible parent. Most of the time I could tell by the looks on their faces, but on rare occasions, they’d tell me right to my face. “You should be embarrassed. You’re failing as a mother”, said one lovely woman who was “only trying to help.” UGH.

Not until we identified a proper diagnosis 10 years in were we able to find an expert in Reactive Attachment Disorder. With this doctor’s help, we were finally able to find some peace for our family. We did a family intensive therapy that lasted two solid weeks, four hours a day, with four therapists, and all four of us. This experience was hard… probably the most intense and soul-searching thing I’ve ever done, but over time, we realized that this therapeutic effort was the greatest money we’ve ever spent on our family.

We also found Maddox a school that was designed for kids with social, behavioral and academic challenges. The environment offered incredibly small class sizes, experiential learning, meditation and yoga, a social worker on staff who met with them every day, and even a weekly visit from the school therapy dog.

That was three years ago. Today, Maddox is doing amazing. He’s finishing up his freshman year at the public high school, which he chose primarily because he wanted to be in a marching band. Music has been great for him, and he’s now a member of six different bands both at his school and in the metro area. He is playing both the tuba and the bass trombone. Smallest kid, biggest instrument. He loves it!

We haven’t seen a violent incident in over two years and he’s incredibly mellow now. His grades have improved. He has a group of friends. He even has a girlfriend, who he’s been meeting at the mall or the library for almost a year. Life is good.

I’m so proud to have a success story to share. Our journey wasn’t easy, and I wouldn’t wish RAD on my worst enemy, but I’m happy to say that we never quit searching for answers and trying new alternatives. I love this kid with all my heart. And love never quits.


Gina Heumann is the author of the upcoming book, Love Never Quits – Surviving & Thriving After Infertility, Adoption, and Reactive Attachment Disorder, which is due to be released in the summer of 2019. Find her at www.ginaheumann.com or on Facebook and Instagram @loveneverquits.


Surviving and thriving with RAD: In his own words

Jessie Hogsett was diagnosed with RAD at the age of 12 and grew up acting out of the hurt and trauma of his early childhood. Not only has he survived and thrived a childhood of horrific abuse and neglect, but he’s gone on to work in a treatment facility for troubled kids. Today he has a beautiful wife, five children, and a successful career.

Jessie understands the struggles of a child diagnosed with RAD in a way a parent alone never can.

His book, Detached: Surviving Reactive Attachment Disorder is an invaluable window into the psyche of a child struggling to overcome developmental trauma. His advice comes from personal experience and is invaluable to parents and clinicians alike.

Here’s a few gems of wisdom from Jessie:

  • You can’t walk forward if you keep looking backward. Keep helping your RAD child concentrate on the now and the near future. Keep reminding him he can do absolutely nothing about the past. Keep telling him he can do everything about the present and future though.
  • Tell him that taking responsibility for his actions makes him really powerful. After all, if he can create problems, then he can also create solutions. His choices determine success or failure. Blaming someone else for his problems saps his power because he has little or no control over other people. Tell him he can have a terrific future but it’s all up to him.
  • Drive him around to see the nicest house in the neighborhood. Tell him when he’s older, if he works hard, he could be living in that house, in that neighborhood, and enjoying a good life. tell him you can picture him growing up and living there surrounded by his own happy family.
  • Tell your child that you love him all the time. Even though love alone will never be enough to “cure” a RAD child, instilling in his mind every day that he is loved, will, over time, let him realize that someone does care for him. Keep telling him this even when you don’t get any response back and even if it seems he isn’t listening. He probably is.
  • Seek out comedies on TV, DVDs, and at the movies. Laughter alleviates stress and is clearly good for both body and soul.
  • When your child raises his voice to you, lower your voice. Speak to him in a calm reassuring “your behavior doesn’t phase me” tone of voice. He wants to hear what you are saying because he wants that attention. In order for him to hear you, he will have to lower his voice.
  • To build trust, tell the child the time frame in which you’ll be completing whatever you promised him you’ll do. Give yourself more than ample time so you can always do it within that time period.
  • Teach him step-by-step how to succeed at tasks. Write down the steps for him using numbers 1, 2, 3, etc.

These unconventional, practical suggestions are only a fraction of the 144 ideas included in Detached: Surviving Reactive Attachment Disorder.

Jessie is a huge asset to the parenting community and I’m looking forward to interviewing him soon. If there’s a specific question you’d like me to ask Jessie, please drop it in the comments.

Be sure to follow Jessie on social media for news and updates on his new upcoming book!

Find Jessie on Instagram or Facebook

A Dangerous Son

This HBO documentary explores the struggle of three moms who are trying to find mental health services for their aggressive sons.

A Dangerous Son tells the story of families with sons who have disorders that lead to explosive, violent behaviors. These kids are a danger to their families and themselves – but there are few options for mental health services. The documentary doesn’t go into the diagnoses of the children but does mention the autism spectrum, intellectual disability, and schizoaffective disorder.

While our children may have different diagnoses, the issues are the same for every parent struggling with a child who has violent behaviors. The themes are eerily familiar:

The documentary is headlined by Liza Long who wrote the viral blog post, “I am Adam Lanza’s Mother,” in the aftermath of the Sandy Hook school shooting. If you haven’t read it, here’s an excerpt:

I live with a son who is mentally ill. I love my son. But he terrifies me…In the wake of another horrific national tragedy [Sandy Hook], it’s easy to talk about guns. But it’s time to talk about mental illness.

Liza Long, I am Adam lanza’s mother

If you haven’t read it I highly recommend Liza Long’s book, The Price of Silence: A Mom’s Perspective on Mental Illness.

The lack of mental health treatment for kids with a propensity for violence is a national tragedy. It’s impacted Liza Long’s family and my own. And in some cases it spills out into our schools and communities. A Dangerous Son is a well made, compelling documentary that helps raise awareness around the difficulties of parenting a child who has violent behavior and the struggle to find help.

Have you seen it? Drop a comment below to share your thoughts.

When Insurers Deny Mental Health Coverage, Families In Crisis Struggle Even More

By Christine Herman

When Matthew Timion needed to get his son treatment for mental illness, he did not anticipate it would be so hard to get the insurance company to pay for it.

Timion adopted his son out of foster care when he was 3. He says the trauma and neglect his son experienced in his early childhood led to mental health issues later in life.

At age 10, Timion’s son began to act out aggressively and threaten violence. At one point, Timion was bringing his son to an inpatient psychiatric hospital in the Chicago area every few weeks.

At times, the insurance company and the hospital staff disagreed over whether treatment was necessary.

“He was cutting himself and he’s hearing voices and he is threatening to run away and kill me,” Timion says. “The insurance company says, ‘Well, he hasn’t done that in three or four days now, he’s good to go home.’ And the hospital said, ‘No, he has to stay.’”

Timion filed multiple appeals and won. But months later, when his son needed even more costly residential treatment, Timion almost relinquished parental custody to force the state to step in and pay for treatment he couldn’t afford.

But data from Illinois shows not all parents can navigate insurance for their children like Timion. Dozens of children a year enter state custody when parents run out of options for getting them the mental health care they need. Fundamentally this issue of who pays for mental health treatment comes down to a law that requires insurance companies to cover mental health care at the same level as other medical conditions.

The Complicated Battle for Coverage

To get an insurance company to pay for a claim they’ve denied, patients can file an appeal. But if the internal reviewer—a medical doctor employed by the insurance company—agrees the treatment isn’t needed, the patient has to pay the bill.

When this happened to Timion, he appealed to the state agency that regulates insurers. The case was reviewed by a psychiatrist, who determined Timion’s son needed to be at the hospital, and the insurance company, Blue Cross Blue Shield of Illinois, must pay for it.

“So in our case it worked out,” Timion says. “Most people don’t have the tenacity to go through this process,” especially if they’re in the middle of a crisis with their child.”

A 2015 survey from the National Alliance on Mental Illness suggests Timion’s experience is not unique.

NAMI asked consumers across the country about their experience with private insurers, and found that people seeking coverage for mental health services report being denied at a rate double those wanting coverage for other medical services.

Blue Cross Blue Shield of Illinois declined an interview but sent a statement saying the level of care they cover for group, individual and family health insurance policies is based on medical necessity, which includes looking at national guidelines and the needs of individual members. For members who receive health coverage through a government-sponsored program, BCBSIL says coverage is determined by the state or the Centers for Medicare and Medicaid Services.

Locked Out: Listen to the episode of The Workaround related to this story

Laws On The Books

Ten years ago, Congress enacted the Mental Health Parity and Addiction Equity Act. It requires most insurance companies to cover mental illness on par with other medical issues.

But the law doesn’t require insurers to cover all mental health treatments. Rather, they must demonstrate they cover mental and physical health equally.

David Lloyd, national senior policy adviser for the mental health advocacy group the Kennedy Forum, says insurance companies have made some progress toward compliance with parity laws. They no longer charge higher deductibles or have stricter limits on mental health services. But potential violations include denying coverage they deem unnecessary.

John Foley, CEO of Benefit Consulting Group in Northbrook, Ill., says during a time of rising health care costs, insurers don’t want to spend money on expensive treatments that aren’t absolutely needed.

Foley says hypothetically, if an insurance company is asked to pay for a mental health treatment that will cost $600,000, they want to know: “Is there another way to treat this, to handle it for $75,000 and get the same outcome?”

Part of the challenge is that what’s medically necessary is sometimes up for debate, says Foley. If someone breaks a bone, they need a cast. But with issues pertaining to mental health, it’s not always as clear-cut.

Foley says there are also financial incentives on both sides: Providers make more money on expensive treatments, while insurers save money by denying that same care.

“Providers are not angels and neither are the payers. I just want to make that clear,” Foley says. “Neither side is, shall we say, virtuous.”

Stepping Up Enforcement

Advocates say regulators need to step up and do a better job enforcing existing laws so that the burden doesn’t fall to patients in crisis—or their families—to battle insurers when mental health coverage gets denied.

In recent years, state and federal regulators have taken steps to improve compliance with parity laws.

A 2014 investigation led by New York Attorney General Eric Schneiderman uncovered numerous parity violations by private insurers, resulting in settlements that forced the companies to return millions of dollars to consumers. In 2014 and again in 2017, the state of California fined Kaiser Permanente for failing to provide members with timely access to mental health care.

In Illinois, where Timion is, Governor Bruce Rauner recently signed into law a measure advocates say will enable greater enforcement of parity laws by increasing transparency and accountability for health plans.

Lloyd says Illinois now has the strictest mental health parity laws in the country, and he hopes other states will follow suit.

The Price Of Coverage Denial

Mental health coverage denials can have dire consequences on families.

When Timion’s son was hospitalized again at age 13, doctors said it wasn’t safe for him to return home. He needed to go to a residential treatment center to receive 24/7 care, which can cost up to $200,000 a year.

Timion’s insurance company said they would cover one month. But many facilities won’t accept a patient without proof of payment for at least six months, which Timion did not have.

While his son remained at the psychiatric hospital, Timion says he spent eight hours a day for more than a month on the phone with his insurance company, state agencies, even lawmakers, trying to figure out how to pay for residential treatment.

Thanks to a family connection with a mental health facility nearby, Timion moved his son from the hospital into residential treatment. The month covered by his insurance company ran out, but he convinced the child welfare agency to cover treatment until a state grant would kick in to pay for the remainder of his son’s treatment.

“Mental health care is not treated the same way as cancer or anything else,” Timion says. “So people have to go through these ridiculous hoops” to get treatments covered.

The Kennedy Forum’s David Lloyd says Timion’s story is an example of why it’s in states’ best interests to ensure parity laws are enforced.

“Costs are going to be picked up by taxpayers in one way or another,” he says.

A Father’s Worry

Timion’s son is now 15 and just moved home to Illinois after a year-and-a-half at another residential facility in Missouri.

His son is doing much better, Timion says, but there’s still a long road ahead.

“Parenting never stops,” Timion says. “In his case, it’s just a lot harder.”

He worries about parents who aren’t able to access mental health treatment for their child.

“Most of the parents I talk to, they’re looking at their kids ending up in jail soon, or dead,” Timions says. “That’s just how bad the behaviors are getting.”

This story is part of a podcast from Side Effects Public Media called The Workaround. You can listen and subscribe to the show here.

Christine Herman is a recipient of the 2018-2019 Rosalynn Carter Fellowships for Mental Health Journalism. Follow her on Twitter: @CTHerman

Out Of Options, Parents Of Children With Mental Illness Trade Custody For Treatment

Illinois NewsroomJul 31, 2018

When Toni and Jim Hoy adopted their son Daniel as a toddler, they did not plan to give him back to the state of Illinois 10 years later.

“Danny was this cute, lovable little blonde-haired, blue-eyed baby,” Jim said. There were times Daniel would reach over, put his hands on Toni’s face and squish her cheeks.

“And he would go, ‘You pretty mom,’” Toni said. “Oh my gosh, he just melted my heart when he would say these very loving, endearing things to me.”

But as Daniel grew older, he began to show signs of serious mental illness that manifested in violent outbursts. When his parents exhausted all other options, they decided to relinquish custody to the state to get Daniel the treatment he needed.

Listen here as the Hoys tell about how they gave up custody of their son to get him needed mental healthcare.

“To this day it’s the most gut-wrenching thing I’ve ever had to do in my life,” Jim said. “But it was the only way we figured we could keep the family safe.

To this day it’s the most gut-wrenching thing I’ve ever had to do in my life. But it was the only way we figured we could keep the family safe. Click To Tweet

Across the U.S., children encounter many barriers to mental health treatment, including a shortage of psychiatric beds and coverage denials from insurance companies. In a desperate attempt to get their child treatment, some parents have discovered a last resort workaround: they trade custody for treatment.

Known as a psychiatric lockout, a parent brings a child to a hospital and refuses to pick them up. The child then enters foster care, and the state is obligated to pay for their care.

This happened to Daniel in 2008, and has happened to thousands of other children before him, according to a report from the Government Accountability Office.

Today, despite a 2015 Illinois law that states families should never have to trade custody for mental health treatment, at least four children a month enter state custody this way, according to data obtained by Side Effects.

Out of options

Daniel grew up as the youngest of four children in Ingleside, just north of Chicago. As a baby, he’d been severely neglected — starving and left for dead — and the early trauma Daniel experienced affected his brain development.

At around age 10, his post-traumatic stress disorder manifested in violent outbursts.

“You could almost tell the stories that would describe him like a monster,” Toni said.

“He held knives to people’s throats. He tried putting his fingers and his tongue in the light sockets. He broke almost every door in the house.”

In the car, there were times when he’d reach over and grab the wheel while Toni was driving to try and force the car into oncoming traffic. Other times, he would lash out at his siblings.

“At the same time, he’s a little boy,” she said. “He didn’t want to be that way. He didn’t like being that way.”

Despite Toni and Jim’s efforts to help their son with therapy, the violence escalated. Daniel was hospitalized almost a dozen times over a period of two years.

His doctors said he needed more intensive mental health services than he could get while living at home. He needed 24/7 residential treatment, but both Daniel’s private health insurance, and the secondary Medicaid coverage he received as an adoptee, denied coverage.

So the Hoys applied for a state grant meant for children with severe emotional disorders. They also asked for help from Daniel’s school district, which is supposed to cover a portion of the costs when students need residential care. They were denied both.

“We were told we had to pay out of pocket for it,” Toni said. The treatment could cost up to $150,000 a year, and that was money they didn’t have.

Then, during Daniel’s 11th hospitalization, the Illinois Department of Children and Family Services, or DCFS, gave the Hoys an ultimatum.

“[They] basically said, ‘If you bring him home, we’re going to charge you with child endangerment for failure to protect your other kids,’” Toni said. “‘And if you leave him at the hospital, we’ll charge you with neglect.’”

Out of options, the Hoys chose the latter option as a last-ditch workaround to get treatment.

Once the DCFS steps in to take custody, the agency will place the child in residential treatment and pay for it, said attorney Robert Farley, Jr., who is based in Naperville.

“So you get residential services, but then you’ve given up custody of your child,” he said. “Which is, you know, barbaric. You have to give up your child to get something necessary.”

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Get Toni’s book here.

Taking it to the courts

The Hoys were investigated by DCFS and charged with neglect. They appealed in court and the charge was later amended to a “no-fault dependency,” meaning the child entered state custody at no fault of the parents.

Losing custody meant Toni and Jim could visit Daniel and maintain contact with him, but they could not make decisions regarding his care.

Toni spent months reading up on federal Medicaid law and she learned the state-federal health insurance program is supposed to cover all medically necessary treatments for eligible children.

The Hoys hired a lawyer, and two years after giving Daniel up, they sued the state.

Less than a year later, in 2011, they settled out of court, regained custody of Daniel, who was 15, and got the funding for his care.

Around the same time, Farley decided to take on the lack of access to mental health care on behalf of all Medicaid-eligible children in the state. He filed a class-action lawsuit, claiming Illinois illegally withheld services from children with severe mental health disorders.

“There [are] great federal laws,” Farley said. “But someone’s not out there enforcing them.”

In the lawsuit, Farley cited the state’s own data that shows 18,000 children in Illinois have a severe emotional or behavioral disorder, yet only about 200 of them receive intensive mental health treatment.

In a settlement in January, a judge ruled the state must make reforms to comply with Medicaid law. The state has until October to come up with a plan to ensure all Medicaid-eligible children in the state have access to in-home and community-based mental health services.

A law that didn’t fix the problem

While these legal battles were taking place, lawmakers began their own work to ensure parents no longer have to give up custody to get their children access to mental health services.

In Illinois, six state agencies interact with at-risk children in some form. But Democratic state Rep. Sara Feigenholtz said they operate in silos, which causes many children to slip through the cracks and end up in state custody.

“It’s almost like these there’s a vacuum, and the kids are just being sucked into DCFS,” she said.

Feigenholtz worked to get a bill passed in 2014. The Custody Relinquishment Prevention Act, which became law in 2015, orders those six agencies to work together to help families that are considering a lockout to find care for their child and keep them out of state custody.

So the agencies developed a program together that launched in 2017 — years after the deadline set by the law. It aims to connect children to services.

But Feigenholtz said the fact lockouts still happen shows a lack of commitment on behalf of the agencies.

“I think the question is: Shouldn’t government be stepping in and doing their job? And they’re not,” she said. “We just want them to do their job.”

B.J. Walker, head of DCFS, said the reasons lockouts happen are complex. “If law could fix problems, we’d have a different world,” she said.

Walker said many children in need of residential treatment for mental illness have such severe or unique conditions that it can be a struggle to find a facility that’s willing and able to take them.

Even for families that get state funding to pay for the care, families Side Effects Public Media spoke to said the waiting lists can run six months or longer. When parents are unable to arrange a placement, the child may enter state custody, and as ProPublica Illinois reports, they could languish for months in emergency rooms that are ill-equipped to provide long-term care. Some out-of-state facilities are not willing to accept Illinois children, citing concerns over severe delays in payments that stem from a recent two-year budget crisis in Illinois.

The program to prevent lockouts requires families take children home from the hospital after medical providers have done everything they can. But many parents say it’s not an option for them because their child remains too violent for home.

For these reasons, children continue to enter state custody as a final effort by their families to help them.

A spokesman for DCFS said in an email that, when the agency gets blamed for this problem, it’s like when a pitcher comes in at the end of a losing game to save the day and gets tagged with the loss.

What it will take to prevent lockouts

Lockouts can happen anywhere, but Heather O’Donnell, a lawyer with a Chicago-based mental health treatment provider, Thresholds, said the situation is particularly bad in Illinois.

She said a big part of the problem is that society sweeps mental health conditions under the rug until there’s a crisis.

“We don’t have a very good system in Illinois for children or adolescent or young adults with significant mental health conditions,” O’Donnell said. “What Illinois needs to put into place is a system that helps these families early on so that these kids never get hospitalized.”

That’s what the state is trying to fix now.

The consent decree issued as part of the class-action lawsuit settlement requires the state to propose a plan by October to ensure all Medicaid-eligible children in the state have access to mental health services in their communities, with changes slated to begin in 2019. Farley estimates the changes will cost the state several hundred thousand dollars, based on what it cost other states like Massachusetts to implement similar reforms.

The difference treatment and family can make

Daniel Hoy is now 23 and has been out of residential treatment — and stable — for five years. He has a 2-year-old daughter, works nights for a shipping company in Rantoul, in central Illinois, where he recently moved to be closer to his parents.

Daniel said treatment was tough, and he would not have gotten better without his parents’ love and support.

“Sometimes it’s so hard to do it for yourself,” he said. “It almost helps to know that I’m doing it for myself, but I’m also doing it for my family and for our relationship.”

Toni’s thankful that despite losing Daniel while trying to help him, they ultimately made it through intact. She’s in touch with other families that have gone through lockouts too and most, she said, are not as lucky.

That’s why Toni said she will continue to speak out about this issue. “Kids do need services,” she said. “But they also need the support of their families. And when they have both, a lot of kids can be a lot more successful.”

Get Toni’s book Second Time Foster Child: How One Family Adopted a Fight Against the State for their Son’s Mental Healthcare while Preserving their Family

Republished with permission. This story was produced by Side Effects Public Media, a news collaborative covering public health.

The Boy Who Cried Abuse

Devon was a boy who cried wolf. On several occasions, he claimed workers had purposely hurt him. When he mumbled about Mr. Myron beating him up. My stomach churned not knowing what was true, what was exaggeration, and what was an outright lie. It was hard to imagine a worker beating Devon, but not hard at all to imagine Devon accidentally hitting his head during a restraint. I was pretty sure this was somehow Devon’s own fault, and that the investigation would bear that out, but were those fingermarks on his neck? How could that be an accident?

Read the full story here.

Father’s Day for dads of children with RAD

Guest post by Terrie, RAD mom

Today I remember all the dads – adoptive, foster, step and birth – for whom Father’s Day is literally not a special day at all because they love a child with reactive attachment disorder. These children see their parents as an extreme threat because they love and nurture them.

While they are at work, their wives will be beaten and verbally abused. Urine and feces will be smeared on walls, furniture and even in their personal drawers. They’ll be unable to help, but take the phone calls from their desperate wives. When these dads return to their destroyed home, they will look into the face of their child and see no remorse, affection, or empathy – only rage.

They will spend Father’s Day, as every day, trying to protect their wives, other children, and pets. They’ll desperately try to be everywhere their RAD child is to keep everyone safe. After thinking they locked up everything that can be used as a weapon, they may still be struck in the face full force with a log. They will hold their partner in their arms while they sob inconsolably. While their child charms the world, they utter the words: I am afraid of my child.

Happy Father’s Day to all the forgotten dads who beg for help to keep their family safe, yet help never comes. The dads who call the police numerous times a week for help. These dad who can’t help but wonder, will my child be the next school shooter? The dads vilified by state agencies and governments when their child does one of the many manifestations of their diagnosis: lying about being abused or not being fed, abusing siblings, or maiming and killing family pets.

Happy Father’s Day to the very special group of dads who made the decision to love a child from hard places and whose life has not and will not ever be the same. Click To Tweet

This Father’s Day I think of the dads whom family and friends have walked away from. With a child who charms the outside world, these dads aren’t believed when they talk about how dangerous their child is. These dads have brain damaged children, denied love and neglected early in life, who rage and try to punish all who love them now. There’s no help for these dads because our society does little to provide mental health treatment for these children. Insurance companies refuse to pay for treatment.

God bless the dads who are able to put in a full day’s work then come home to the extra jobs of parenting a child with reactive attachment disorder. The dads, who on a good day with no violent disasters to deal with, just want to sit and relax. Instead they have to clean out their recliners after their child make messes, defiantly destroying property to push their parents away. These children thrive on these moments of chaos.

God bless every one of the thousands of dads who suffer every day in silence. I hear you. I celebrate your sacrifices, and you and your families’ safety are in my prayers every single day!

— Terrie, RAD parent

Just

This is a devastating story of a family struggling to love and raise two adopted foster children. The unfairness and inadequacy of the system are clear as they navigate trying to raise children with mental illness. When the unimaginable happens, and they discover one of the children has been sexually preying on another, the system utterly fails them. This book is vulnerable and raw.

When I read this several years ago, during some of my darkest days, I suddenly felt not quite so alone. I highly recommend it to parents who are struggling to raise adopted children.

Elea Lee blogs here  Find it on Amazon: Just