Category: Stories from the Trenches

Developmental trauma shouldn’t be a life sentence for any child or family

Scary Mommy

Originally published by Scary Mommy as Developmental Trauma Absolutely Destroyed My Family

My husband and I jumped in heart first when we adopted out of foster care. Devon was three with big brown eyes and a shy smile. His two-year-old half-sister, Kayla, was spunky with freckles and gobs of curls. We already had two young sons and I eagerly imagined a lifetime of annual family photos, beach vacations, holidays, and birthday parties.

Early on we learned that Devon and Kayla had been neglected and abused, and they’d been in multiple foster homes. Because of this, they both were anxious and inconsolable at bedtime. Devon squirreled food away under his bed and sometimes gorged until he threw up. He was aggressive, played with his feces, and urinated in odd places around the house.

These behaviors concerned us, but in our pre-adoption training we were told they were completely “typical” for foster kids and there was nothing the love of a “forever family” couldn’t heal.

Over the next few years we went on the beach vacations I’d dreamed of and the kids had birthday parties at Chuck E Cheese. They played soccer and learned to swim and ride bikes. Kayla settled in, but Devon continued to struggle. I tried many different parenting strategies, but he wasn’t motivated by rewards or deterred by consequences. Two years after the adoption, our family grew once again with the birth of our youngest son Brandon.

Devon started kindergarten and enjoyed the first few weeks with his Blue’s Clues backpack and matching lunch box, but then the calls home began. One day he pulled the fire alarm. Another time he ran out of the school and an assistant principal had to chase him away from the busy road. He often refused to do his homework, especially if I told him to. Once he became so angry he pulled his bedroom door off the hinges. He was six.

It was clear something was seriously wrong, but I had no idea what it was or what to do about it.

By the age of eight, Devon’s tantrums lasted two or three hours at a time. He’d smile at me and say, “I feel like having a fit.” And then he would. He knocked holes in walls, broke toys, and chased his siblings with a baseball bat. I tried to be patient, but it seemed impossible. Sometimes he’d kick my head or try to climb out the van window while I was driving.

Adding to my frustration, Devon was adept at hiding his behavior from my husband. When he heard the garage door open, and realized Dad was home from work, he’d snap off his tantrums like a light switch. As a result, my husband thought I was overly sensitive or overreacting. When I reached out for help – to teachers, family, friends, therapists – they too assumed this was a parenting problem.

Sometimes I wondered if they were right. There were times I lost my temper, said things I shouldn’t have, and overreacted. I grappled with guilt, shame, disappointment, and anger.

Tired of being blamed, I plastered on a smile in public and hid behind closed doors. I grew more isolated and lonely. I developed a sleep disorder, was hyper-vigilant, and constantly on edge. In retrospect, I realize Devon’s tantrums had, by this time, morphed into rages. This created an environment of toxic stress for his siblings, and though I didn’t yet know it, I’d developed PTSD. I was so busy just surviving, I had little insight into how dire the situation had become.

Then, one afternoon, Devon angrily karate chopped little Brandon in the throat. Moments later he pushed him down the stairs. One giant shove from behind. Brandon wasn’t seriously hurt but it was the wake-up call I needed.

I began to take Devon to the mental health emergency room whenever he became unsafe. I had no idea what else to do. The first time I signed him into the psych ward, my heart pinched. This wasn’t the adoption happily ever after I’d imagined for us. Still, I was optimistic we were on our way to getting help.

The ER psychiatrist started Devon on medications. They didn’t seem to help. After several visits and one admission, the hospital referred us for intensive outpatient services.

Devon began to receive 15 hours of treatment and therapy a week. The treatment team helped me create a safety plan for Devon’s brothers and sister. They would run upstairs and lock themselves in my bedroom whenever he became physically aggressive. For everyone’s safety, they coached me to restrain him in what I called a “bear hug.” I was terrified, exhausted, and heartbroken all at once.

A few days into fifth grade, Devon punched his teacher in the stomach. He plucked out his eyelashes and wrapped a belt around his neck. That’s when his therapist sat me down to explain that Devon needed to be in a residential treatment program.

I balked. We just needed more therapy or different medications, didn’t we? There must be something else we could try…

She shook her head and insisted. His behavior was dangerous and the months of outpatient services he’d been receiving weren’t helping.

Devon was admitted to his first residential psychiatric facility when he was only 10 years old and we expected him to return home, much better, after a few months of intensive treatment. But while there he broke a staff person’s thumb. He caused thousands of dollars of property damage. He vomited and urinated on staff, and stabbed other residents – kids like himself – with pencils. He tried to strangle himself with his shirt.

As this continued for months, and then years, I was confused. Devon was receiving countless hours of therapy. Why wasn’t he getting better? Why weren’t his medications helping? It didn’t make sense.

I began to do my own research and learned about developmental trauma – the effect chronic abuse and neglect can have on young children. These kids perceive the world as unsafe and unpredictable and can go into fight-or-flight mode in even minimally threatening situations. Trauma can also disrupt their brain development. They may feel the loss of their birth mother so acutely they begin to unconsciously view any new mother figure as the enemy.

Suddenly Devon’s behaviors made more sense – his impulsivity, emotional and behavioral dysregulation, desperate need for control, and targeting of me. It was such a relief. Now that I knew what was wrong, I was hopeful Devon could finally get help.

Though the therapists agreed Devon had developmental trauma, their treatment approach didn’t change. They simply slapped on more diagnoses and tweaked his cocktail of drugs. They continued with the same ineffective therapies.

I was at a loss for a way forward. I thought back to the three-year-old little boy who we believed only needed was the love of a forever family. By then I’d realized love couldn’t heal developmental trauma any more than it could cure leukemia or set a broken bone. And the mental health system clearly had no solutions. Devon’s condition was getting worse in the treatment facilities. But what else could we do? With the safety of his younger siblings to think of, Devon was too dangerous to live at home.

Today Devon is 17 and has been in a parade of group homes, psych wards, and treatment centers. We visit him regularly, but he’s not stable or safe enough to move home. He’s been on numerous antipsychotic drugs and has received an alphabet soup of diagnoses: ODD, ADHD, CD, RAD, PTSD, DMDD, and more. He’s proven to be extremely resistant to traditional therapy, a hallmark of developmental trauma. With each new placement he’s grown more dangerous and violent. He’ll soon turn 18 and age out of the treatment centers as an angry young man.

I am angry too.

Ineffective treatment has snuffed out Devon’s once bright future and our family has been broken. Hundreds of thousands of children suffer developmental trauma, yet the mental health system has no answers. I recently heard leading trauma researcher Bessel van der Kolk speak at a conference and he confirmed what I learned the hard way: We have a long way to go in the work to develop effective treatments for developmental trauma.

How is this possible? Why isn’t the public outraged? I’m convinced it’s because our stories aren’t being told. We talk freely about the challenges families face when their child has leukemia or other physical illness. But there’s a taboo around mental health struggles.

Yet, there are thousands of families with stories virtually identical to Devon’s, and to mine. Like me, these families receive little support. Gaslighted, blamed, and shamed into silence, they’ve gone underground into private and secret online support groups. Their suffering is treated like a dirty little secret instead of the national crisis – the tragedy – it is.

Realizing this has only cemented my commitment and determination to raise my voice louder and to use my blog to call for increased funding and new research for treatments for developmental trauma. I am speaking out not only for Devon and my family, but for the thousands of families and children who have no voice.

Developmental trauma shouldn’t be a life sentence for any child or family.

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.

Aging out of RTF into the real world – a dangerous proposition

J.D. spent his teenage years growing up in a residential treatment facilities. He celebrated his 18th birthday by walking out through those doors – free to make his own decisions and live life his way. Within days, J.D. was causing a public disturbance. Police were called. They told him to put his hands in the air. He laughed. He mimed a gun with his fingers. The officers open fire.

J.D. fell to the ground – dead.

For those of us who’s kids have spent years in residential treatment facilities (RTFs) – growing only more dangerous and violent – this story strikes like a death bell in our chest.

My son Devon has been bounced trampoline-style from facility to facility since he was 10. He’s been in these facilities because he cannot live safely at home. He poses a threat to himself and to his younger siblings. However, instead of getting better in these therapeutic settings, his behavior has become worse. 

Because of the polices of these facilities, Devon has committed assaults and serious vandalism with no consequences. 

  • He’s created thousands of dollars of property damage –  no consequence.
  • He’s made false allegations of abuse – no consequence. 
  • He broke a woman’s thumb – no consequence.
  • He stabbed a kid in the back with a pencil – no consequence.
  • He punched a girl in the back of the head – no consequence.

Unfortunately, this is how treatment facilities work. The underlying idea is if you consequence kids, that’s all you’ll ever do and they won’t be able to receive therapy. This is true, but on the flip side, what if the “therapy” the kid is receiving in leu of consequences does not help? What have they learned?

My son will turn 18 in a handful of months. He’s itching to leave and at one-minute past midnight he’ll bolt. He won’t have a high school diploma or have any job skills. Worse, he won’t understand that there are consequences in the real world. He’s come to believe that, with a bit of fast talking, he can turn any situation into a ‘therapeutic incident’ and deflect consequences. 

I’m sure that’s what J.D. thought too – before he was shot and killed by police. He expected them to beg him to calm down, offer him coping skills, and at worse drop him to the ground in a physical restraint. I have no doubt that J.D. did not understand the danger of his behavior.

For the safety of our kids, who will someday age-out of residential treatment and into the real world we must find a balance. I don’t pretend to know the answer and there are no quick and easy solutions to this problem. But here’s what I do know: Our kids must have effective treatment AND understand that their choices have consequences. 

My kids’ pediatrician told me this story. He personally knew this young man and the incident happened several years ago. 

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 Newsroom–Jul 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.”

[bctt tweet=”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.” username=”RaisingDevon”]

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.

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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.

What it’s like being the sibling of a child with RAD

“It’s like living in a prison. We can’t go anywhere. All doors are locked. Alarms everywhere. We can’t have friends over. Stuff goes missing. We’ve all had black eyes, split lips and bite marks…we’re the ones who suffer.” – Grace, 14, on living with a sibling with reactive attachment disorder.

Grace’s experience is not uncommon for siblings of children who fall on the moderate to severe range of reactive attachment disorder (RAD). The dysregulation and other challenges of RAD restrict family activities, cause stress and chaos, and require a disproportionate amount of parental attention and energy.

Siblings are too often the overlooked victims of the disorder.

I initially thought that adopting another child would enrich the lives of my other kids. I certainly never imagined that it’d be a traumatizing situation. For years, my children were routinely exposed to scary outbursts and stressful conflicts. They were humiliated and embarrassed at school – especially after their brother who has RAD punched a teacher in the stomach. They missed out on sleepovers, birthday parties, and were late to basketball and soccer practices. Doing my best in the moment – surviving – I didn’t realize how difficult things were for them until much too late. They had internalized fear, anxiety, and anger.

Doing my best in the moment – surviving – I didn’t realize how difficult things were for them until much too late. It was only later that I realized how traumatized siblings internalize fear, anxiety, and anger.

The struggles and emotions of brothers and sisters of children with RAD—siblings like Grace—can best be understood through their own words. I put up a post on two online Facebook support groups to gather those sentiments. In those posts, I requested parents to ask their children what it’s like having a sibling with RAD. I’ve included their responses throughout this article and only edited their comments for grammar.

Living in Fear

Many siblings are trapped in a perpetual state of anxiety and vigilance, fearful for their own safety and the safety of their parents. They’re often targeted with physical aggression and witness terrifying situations.

Here’s what siblings are saying:

“I can feel her getting all angry and I get worried and feel a little sick in my stomach. When she gets really bad and is yelling and screaming and hitting you [mom] I feel upset that I can’t stop her, that I can’t protect you from her.” – Chad, 10

“Mommy, I am scared. She hurts me.” – Susie, 6

“Is the door locked?” – Jake, 15, sleeping on his parent’s bedroom floor with his 10 and 12-year-old brothers.

“I’m scared she’s going to do something to me. But I won’t let her know I’m scared.” – Mia, 11

“I wish she could live somewhere else. I don’t like her anymore. She’s never nice.” – Ava, 4, whispered to her mother afraid her sister with RAD would overhear and retaliate.

“No, Sis!” – Emma, 2, screamed in a nightmare after watching her 12-year-old sibling with RAD physically attack her mother.

“Why is she always so mean to me? She’s always hateful and yelling at me.” – Ashley, 10. A middle child, Ashley also has a brother with RAD. Of him she says, “He lies to get me in trouble. He hits me and threatens to kill me and swears at me.”

What you can do

Put alarms on sibling’s doors to help them feel safe. Give them the option of sleeping on a daybed in your bedroom. Make a concerted effort to minimize their exposure to violence and danger with an escape plan out of escalating situations. This may mean calling grandma to be picked up, going outside to play or another option that works best for your family.

Internalizing dysfunction

For many siblings, family life can be highly dysfunctional and confusing. This can lead to a warped view of normal family relationships with devastating, lifelong impacts. Siblings often struggle to differentiate the person from the disorder and come to hate their brother or sister who has RAD.

Here’s what siblings are saying:

“She always says she’s sorry and goes right back to being so happy when I’m still hurt. I can’t trust her anymore because she always says she won’t do it again and then usually does in the very same day.” – Beth, 10

“I never want children of my own. What if something goes wrong and they end up like her? I just couldn’t handle raising a child like that!” – Marie, 29

“Mom, does he have to come home? You are so much nicer when he is gone.” – Brandon, 12

“Sometimes I feel like no one can see me because my mom and dad give [my sister with RAD] constant attention.” – Honor, 6, who after having to help out with her RAD sister says she never wants to have children.

“It breaks my heart to hear my baby sister say she hates me and is going to kill me tonight! It’s not fair.” – Samantha, 15, said weeping.

“They’re always mad, sad, and don’t like their mom or dad, and lie all the time.” – Addison, 10, on why all siblings are bad.

“Don’t you get it? She is a horrible person.” – Kayla, 12, when she found her mom sobbing over something her sister with RAD said.

What you can do

Let siblings be honest about their feelings and don’t minimize their experiences. Find a good therapist who can help them process and gain some perspective. An outside person, like a therapist, can help them develop empathy and compassion while maintaining healthy boundaries.

Many people think that time apart is counterintuitive in helping a child with RAD and their family heal and attach. Yet, it’s quite the opposite with the right model.

Losing their childhood

Siblings don’t live the carefree lives of others. They miss basketball practice and piano lessons when their sibling flips into a rage. They aren’t able to go on family vacations and outings are often cut short. Their treasures and toys are broken. Their allowance is stolen. For them, growing up can be less than ideal and full of heartache and challenges.

Here’s what siblings are saying:

“I’m only 10-years-old! I’m too little to have to deal with this stuff!” – Ethan, 10, once a happy-go-lucky boy who is in therapy. ‪

“It was depressing and exhausting. I was never allowed to have fun.”  – Michael, 10, who has been in therapy for the last two years.

“It feels like living in a minefield. Looks peaceful and nice one minute, war zone the next.” Jeffrey, 8

“I never get to have friends over and I missed my best friend’s birthday party. I already had a present and had to give it to her at school on Monday.” – Abby, 11

“They have no idea what it’s been like!” Skylar, 8, cried after neighborhood kids blamed her when her sister with RAD, 11, was removed from the home. Her sister was removed because she was planning to murder Skylar and her family.

“I can’t wait to move out.” – Hunter, 17. When Hunter’s sister Ava, 10, also traumatized by their sibling with RAD heard this she said, “You can’t leave me here with her!”

“Sometimes it feels like it will never end.” – Emma, 15, who has started cutting to “release” the pain, is severely depressed, and has lost 40 pounds in the last year after witnessing the tantrums, explosions, anger, aggression, violence, and threats of a sibling with RAD.

Siblings don’t live the carefree lives of others. They miss basketball practice and piano lessons when their sibling flips into a rage. They aren’t able to go on family vacations and outings are often cut short…For them, growing up can be less than ideal and full of heartache and challenges.

What you can do

Enlist family and friends to help siblings with rides to practice, science fair projects, and other important activities. When accomodations cannot be made, acknowledge your child’s feelings and validate them. Enroll them in camps. Let them stay with grandma or auntie for long vacations to get a break and enjoy their childhood.

Collateral damage

Many parents, myself included, are so consumed with the minute-by-minute challenges of raising a child with RAD that they underestimate, or don’t fully recognize, the impact on siblings. It was only after my son was admitted to a residential treatment facility that I began to fully understand how his disorder had impacted my other children. To this day my youngest son who lived in fear of his brother for the first five years of his life is highly anxious and at age 11 is afraid to sleep alone. I often wish for a do-over.

When assessing treatment options for your child with RAD, be mindful of the needs of siblings. Many people think that time apart is counterintuitive in helping a child with RAD and their family heal and attach. Yet, it’s quite the opposite. “Time apart allows the parents and other children to heal from their own trauma while, at the same time, kids with RAD learn how to attach and to live in a family,” said Executive Director Forrest Lien. “When the children return to their own families after the Institute, everyone is stronger. They can live together safely. We’re strengthening families so they don’t fall apart forever.”

Don’t make the mistake of imagining siblings are coping and doing okay. Don’t, like me, realize only once the damage has been done. There are no perfect answers, but understanding how RAD impacts siblings is a good starting place. Don’t let them be collateral damage.

Don’t miss these posts:

What to consider before you adopt

How moms of kids with RAD get PTSD

Some names have been changed to protect the privacy of these children.

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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

RAD Recovery: There is hope

Here’s a story from Sandi:

At age 10, my son was diagnosed with RAD (Reactive Attachment Disorder). He is 17 now, and he would no longer qualify for this diagnosis at all.

Over the past eight years, my son has experienced PROFOUND growth and healing.   He no longer has explosive, aggressive behaviors, and we have a beautiful relationship of trust and cooperation.

Read the full story here:  RAD Recovery: The Proven Path to Growth and Healing – Adoption Roots and Wings

 

Your adopted child experienced trauma, now what? | Kirsten Holmberg | TEDxTwinFalls

An adopted child’s time in an orphanage deprived him of his vital need for love, touch, and nurture, which serve as the blueprint for forging healthy relationships. When human connection is absent in the early days of life, the effects last a lifetime. There are three ways to support adoptees and their parents.

Amazing stories of violent children with RAD and the families that love them. (Video)

Here are the stories of one dozen children with Reactive Attachment Disorder (RAD) and how their families found the answers to stop the fighting and the violence. Amazing loving parents, that never gave up and fought for their sick children to heal, offer their stories for