Tag: Reactive Attachment Disorder

RAD and related diagnoses

Why adoption stories aren’t fairy tales

Adoption finalization is a reason to celebrate. Parents have filled out mountains of paperwork, waited months or years and shed many tears to get to that moment. They wear matching tee-shirts, eat way too much cake and splash photos all over social media. Adoption day is so momentous that it feels like a “happily ever after” in itself. After friends and family return home and the frosting is wiped clean, some adoptive families are left with a much different “ever after” than anticipated. They can struggle immensely feel completely alone. 

When you support adoptive families, you support children from hard places and all the generations to come.  Click To Tweet

While a friend, family member or professional can support an adoptive family in multiple ways, one simple task is most important—to understand that adoption stories aren’t fairy tales. And the path to happily ever after can be extremely difficult to find for kids with developmental trauma. Once a person understands this reality, they can offer more effective support to an adoptive family over time.

Unfortunately, the judge’s pen isn’t a magic wand for kids who come from hard places. “While many people think that love or ‘good parenting’ will make up for the early trauma a child experienced, it’s just not that simple,” said Executive Director Forrest Lien. “Families of kids with developmental trauma need extensive support and specialized services.” 

Without early and effective intervention, many adopted children from hard places continue to struggle academically and socially[i]—even in stable, loving families. They’re at increased risk for substance abuse and criminal conduct and at higher risk for mental health issues.[ii]

When adopted kids struggle, it’s easy for those around them—family, friends, community—to point the finger at adoptive parents. They’re quick to blame the adoptive parents for not getting help for their child. Or they criticize the child for willfully squandering the opportunities given to them.  

“While many people think that love or ‘good parenting’ will make up for the early trauma a child experienced, it’s just not that simple,” said Executive Director Forrest Lien. “Families of kids with developmental trauma need extensive support and specialized services.”

But an adoptive parent cannot serve as a hero or the villain in combating the effects of a child’s early trauma. And the child cannot simply “get over” developmental trauma. 

Adoption is better likened to the nostalgic “make your own adventure books” where readers make choices that lead to different endings. But depending on their geographical location, proximity to specialized therapists, level of trauma their child experienced early on, financial situation, insurance provider, etc., adoptive parents don’t have many viable good options from which to choose. 

Make Your Own Adoption Adventure: Story of Bobbi

To begin to understand the reality for many adoptive families, take a walk through their unfortunate “adventures”—

Chapter 1

Bobbi, age 7, squirrels food away under her pillow and gets into fights at school. Her parents notice these behaviors aren’t getting better. Bobbi needs to see a therapist who has experience working with adopted kids with developmental trauma. This would put her on the path to happily ever after. However, this is unlikely to be a choice available to Bobbi and her family. Here’s why:

 No matter the path chosen, most parents unwittingly go it alone.  They often hope traditional parenting methods will eventually work. Or they find a therapist who lacks specialized training in developmental trauma. Either way, matters get worse with time.

Chapter 2

By the time Bobbi is a teenager, her behavior is increasingly risky. She’s experimenting with drugs, partying and sexting. At this point, Bobbi needs to go to a specialized in-patient treatment program for her safety and the safety of others. This would put her on the path to happily ever after. However, this is unlikely to be a choice available to her and her family. Here’s why: 

  • Most residential programs mix together kids with a variety of conditions instead of offering specialized treatment for developmental trauma.
  • Many families cannot afford the out-of-pocket costs left over after the limited insurance coverage provided. 

Chapter 3

Unfortunately, many children like Bobbi grow up in institutions where they do not get better. Others get tangled up with the juvenile justice system. By then, choices are even more limited as early intervention is key for optimal healing.  

Why the good options are limited

Developmental trauma can have far reaching and severe impacts. Kids may suffer from attention deficits, developmental delays, behavioral problems and more. Because developmental trauma is a disorder stemming from brain impact during critical developmental stages, there are no shortcuts to happily-ever-after—no quick fixes or easy solutions. Even well-informed adoptive parents and early intervention by qualified clinicians is not always enough. However, proper and early interventions definitely offers hope.

Here’s how that can happen:

  1.  Adoptive parents must be given comprehensive training on developmental trauma and therapeutic parenting. They need support to parent their child and to recognize when they need professional help. 
  2. Adopted children must have access to effective, specialized mental health services. This treatment needs to be accessible and affordable.

It’s both shockingly simple and profoundly tragic. Parent training and specialized mental health services are just common sense. Yet, far too many adoptive families are headed down a rocky and difficult path due to lack of these two basics. 

Although the path toward “happilly-ever-after” isn’t as simple as one would hope, friends, family and professionals can at least try to understand the journey. And they can advocate and educate on behalf of these families. 

The Institute for Attachment and Child Development and I invite you to choose your own adventure in creative ways to support and advocate on behalf of the adoptive families. It’s time for communities to join together to make sure our vulnerable children have every possible resource to reach their happily ever after. Because when you support adoptive families, you support children from hard places and the generations that follow.

Originally published by the Institute for Attachment and Child Development..

[i]https://ifstudies.org/blog/the-paradox-of-adoption/
[ii]https://www.childwelfare.gov/topics/can/impact/long-term-consequences-of-child-abuse-and-neglect/crime/

In the News, RAD and related diagnoses

California Looks To Lead Nation In Unraveling Childhood Trauma

Anna Maria Barry-Jester

Imagine identifying a toxin so potent it could rewire a child’s brain and erode his immune system. A substance that, in high doses, tripled the risk of heart disease and lung cancer and reduced life expectancy by 20 years.

And then realizing that tens of millions of American children had been exposed.

Dr. Nadine Burke Harris, California’s newly appointed surgeon general, will tell you this is not a hypothetical scenario. She is a leading voice in a movement trying to transform our understanding of how the traumatic experiences that affect so many American children can trigger serious physical and mental illness.

The movement draws on decades of research that has found that children who endure sustained stresses in their day-to-day lives — think sexual abuse, emotional neglect, a mother’s mental illness, a father’s alcoholism — undergo biochemical changes to their brains and bodies that can dramatically increase their risk of developing serious health problems, including heart disease, lung cancer, asthma and depression.

“[Nadine] has probably single-handedly done more to elevate this issue than anyone else,” said Dr. Mona Hanna-Attisha, the pediatrician known for documenting the rise in children’s blood lead levels in Flint, Mich., after the city switched its water supply.

With Burke Harris’ selection as the state’s first surgeon general, California is poised to become a vanguard for the nation in embracing the research that traces adverse childhood experiences, or ACEs, to the later onset of physical and mental illness. In pockets across the country, it’s increasingly common for schools and correctional systems to train staff on how academic and behavioral problems can be rooted in childhood trauma. Burke Harris envisions a statewide approach whereby screening for traumatic stress is as routine for pediatricians as screening for hearing or vision, and children with high ACEs scores have access to services that can build resilience and help their young bodies reset and thrive.

As California’s surgeon general, she will have a powerful bully pulpit — and the firm backing of a new administration with deep pockets. In his first weeks in office, newly elected Gov. Gavin Newsom has made clear he intends to devote significant resources to early childhood development. He has named several recognized experts in child welfare, along with Burke Harris, to top posts, and is promoting child-centric policies that include extended family leave for new parents, home nursing visits for new families and universal preschool. In his first state budget proposal, released last month, Newsom called out ACEs by name and committed $105 million to boost trauma and developmental screenings for children.

“It should be no surprise to anyone that I’m going to be focusing on ACEs and toxic stress,” Burke Harris said in a phone interview just days into the new job. “I think my selection is a reflection of where that issue fits in the administration’s priorities.”

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A Game-Changing Study

Adversity is the sort of thing we intuitively understand, at least to some extent. Having a parent who struggles with addiction or mental illness is hard on kids, as is growing up in a neighborhood marked by poverty, gun violence or drug abuse.

A 1990s study laid the groundwork, however, for an understanding of adversity that suggests it poses a pervasive threat to public health.

During interviews with patients at a Kaiser Permanente obesity clinic in Southern California, Dr. Vince Felitti was shocked at how many said they had been sexually abused as children. He wondered if the experiences could be connected. (Kaiser Health News, which produces California Healthline, is not affiliated with Kaiser Permanente.)

As head of the Department of Preventive Medicine at Kaiser Permanente in San Diego, he had access to a huge pool of patients to try to find out. Together with the Centers for Disease Control and Prevention, he surveyed more than 17,000 adult patients about 10 areas of childhood adversity. Among them: Did a parent or other adult in your household physically abuse you? Emotionally abuse you? Sexually abuse you? Go to prison? Was your mother regularly hit? Did you often go hungry? Were your parents divorced? The researchers scored each patient, assigning a point for each yes, and matched up the responses with patients’ medical records.

What they found was striking. Almost two-thirds of participants reported experiencing at least one kind of adversity, and 13 percent — about 1 in 8 — said they had experienced four or more. Those who reported experiencing high doses of trauma as children were far more likely to have serious health problems as adults, including heart disease, stroke, cancer and diabetes. And the higher their ACEs score, the worse their health was likely to be.

This extended to mental health, as well: Adults who reported experiencing four or more ACEs were 4.6 times as likely to have clinical depression and 12 times as likely to have attempted suicide.

In the 20 years since, scientists have built on the research, replicating the findings and digging into the “why.” In the simplest terms, traumatic events trigger surges in cortisol, the “stress” hormone. When those surges go unchecked for sustained periods, they can disrupt a child’s brain development, damage the cardiovascular system and cause chronic inflammation that messes with the body’s immune system.

And where children really get into trouble is when they also are missing the best-known antidote to adversity: a nurturing and trustworthy caregiver. Without that positive stimulation, children can end up with an overdeveloped threat response and a diminished ability to control impulses or make good decisions. Children with high ACEs scores are more likely to develop attention deficit hyperactivity disorder, known as ADHD, and cognitive impairments that can make school a struggle. They are more likely to grow into adults who drink to excess, are violent or are victims of violence.

The research is compelling, because it has the potential to explain so many intractable health problems. What if some portion of Generation ADHD really has PTSD? What if obesity and hypertension are disorders with roots in childhood experiences, and not just what we eat for dinner?

‘What Happens To You Matters’

Until now, Burke Harris’ professional epicenter has been Bayview-Hunters Point in San Francisco. It’s a vibrant community with a history of activism, but also deeply impoverished, and blighted by pollution and violence. It was there that Burke Harris, at her pediatric clinic, noticed that many of her young patients with serious medical conditions also had experienced profound trauma. And patients who had experienced serious adversity were 32 times more likely to be diagnosed with learning and behavioral problems than kids who had not.

When a colleague introduced her to the ACEs study, she saw her patients written between its lines. Though these problems might be concentrated in Bayview, they certainly weren’t confined there. This was a health crisis transcending race, class and ZIP code.

In the years since, Burke Harris has worked to advance ACEs science though her work at the clinic and her nonprofit research institute, the Center for Youth Wellness. She regularly travels the country to train fellow pediatricians in trauma screening and treatment. She has written an acclaimed book on the issue, “The Deepest Well,” and her TED talk on the topic has been viewed nearly 5 million times online.

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Now, she’ll be directing her singular focus back on California.

She plans to start with a statewide tour to hear from doctors and other health leaders about barriers to increasing pediatric screening and care. She’ll also be talking about the science of ACEs. “It’s Public Health 101 that raising awareness is a critical form of primary prevention,” she said.

But even with the funding included in Newsom’s budget, there are challenges to standardizing trauma screening. For one: In medicine, it’s common practice that you screen only for what you can treat. Many doctors — even those persuaded by research on adversity — have raised concerns about the lack of established protocols for treating childhood trauma. What can a pediatrician, with her 15-minute time slots and extensive to-do list, do about the ills of an absent parent, or a neighborhood riddled with gun violence?

In general, experts working on the issue say a critical ingredient in helping kids heal is ensuring they find and develop healthy relationships.

“All of us want to feel seen, heard, understood and supported,” said Alicia Lieberman, a researcher at the University of California-San Francisco who specializes in early childhood trauma. Involving parents is an essential aspect of treatment, particularly because so many have experienced trauma themselves. “It has to start with an acknowledgment that what happens to you matters.”

Researchers have found early success in seemingly simple interventions: Therapists coaching parents by filming and playing back positive interactions with their child. Therapists working with teachers on how to support their students. Key to success, said Pat Levitt, chief scientific officer at Children’s Hospital Los Angeles, are quality programs that start early and recognize the role of relationships.

At her clinic, Burke Harris coordinates with a team that wraps a child in care, treating mind and body. When a patient scores high on the adversity scale, she can send them down the hall to a therapist; connect them with classes on meditation, nutrition and exercise; involve the family in counseling; and aggressively monitor for and treat any physical manifestations.

Most clinics aren’t set up for this staff-intensive approach.

Dr. Andria Ruth, a pediatrician with the Santa Barbara Neighborhood Clinics in California, is among those researching how to “treat” adversity within a more traditional doctor’s office. Her research team is randomly assigning patients who screen positive for trauma into one of three groups. One group is assigned a navigator who connects the family to services for basic needs, such as food and housing. A second group also sees a behavioral health therapist at their child wellness visits. The third group receives both those services, and gets home family visits from therapists.

Ruth has a healthy skepticism about what’s possible, but she and her colleagues are convinced childhood trauma does pose a potent health threat: None of them felt comfortable including a control group that wouldn’t receive any services.

In the big picture, these experts say, addressing the fallout of traumatic stress will require a broader paradigm shift, to a system that recognizes that bad behavior can be a physical symptom rather than a moral failing. Gov. Newsom has signaled a move in that direction: In January, he said he would transfer the Division of Juvenile Justice out of the Department of Corrections, which runs the state’s prison system, and into the Health and Human Services Agency.

Garnering that kind of official backing is a powerful boost, said Jason Gortney, director of innovation at the Children’s Home Society of Washington, that state’s oldest and largest nonprofit dedicated to child welfare. His organization has lots of programs with promising results, he said, but connecting them to state agencies that aren’t used to working together is a challenge.

With Burke Harris crusading from the surgeon general post, Gortney said, he and fellow advocates across the country are hoping California can provide a beacon.

“Maybe California can show some of the other states how to do this,” he said.

This story first published on California Healthline, a service of the California Health Care Foundation.

We need to do better

What I Wish People Knew About These Popular Social Media Quotes…

Everyday I see quotes like these on social media:

Behavior is not a kid being bad, it’s a form of communication.

My behavior is a symptom of my trauma, not willful non-compliance.

These types of sentiments garner thousands of likes, shares, and re-tweets. But for families like mine, they simply don’t ring true.

My son, Devon, has been diagnosed with Reactive Attachment Disorder (RAD), a result of early childhood trauma. My husband and I adopted him out of foster care when he was 4 and prior to that he was neglected and did not form a close attachment with a caregiver. This is called “developmental trauma,” a term coined by leading expert Bessel van der Kolk.

Kids who experience chronic neglect and abuse may begin to default to fight-or-flight mode in even minimally threatening situations. Developmental trauma can also disrupt the brain’s development causing impaired or under developed cortical brain functions including cause-and-effect thinking and abstract thinking. RAD is a common diagnoses for these kids.

I liken RAD to a tug-of-war. For example, Devon will become belligerent over anything from what color socks he’ll wear to if he’ll use a seat belt. His screaming fits last for hours – literally hours – and often include property damage and dangerous physical aggression. Devon treats every situation as though it’s life-or-death, in a desperate attempt to control the people and situations around him.

Are Devon’s extreme behaviors related to his developmental trauma? Of course. He’s driven by the unconscious trauma scars etched on his psyche.

His behavior IS communication.

His behavior IS a symptom of his trauma.

That doesn’t mean his behavior isn’t also willful.

Devon makes a choice when he refuses to buckle his seatbelt. He chooses to tip desks over in his classroom. He chooses to break windows and chase his siblings with a baseball bat.

Certainly, there are some disorders where symptoms are involuntary such as schizophrenia and alzheimer’s. However, RAD is a behavioral disorder. Control and anger issues are symptoms of this disorder.

Kids with RAD can be both unconsciously motivated by underlying trauma scars and willful. These two things can and do coexist. In fact, this is what makes parenting a child diagnosed with RAD so challenging.

Our child enjoys pushing our buttons because it gives them a feeling of control, which they unconsciously crave. That’s the underlying motivation and the pay off, but that doesn’t negate the child’s role in making a choice to engage in certain behaviors.

The idea that a person has no control over their behaviors is not healthy for anyone. I refuse to take away my son’s agency. If he has no control over his behaviors. then he has no hope for a better life and no hope for the future.

As a parent in the trenches, here’s my take on the social media quotes I listed above:

  • I recognize my son’s behavior is a symptom of his trauma, but also as willful non-compliance.
  • I listen to the communication behind my son’s behavior, but I also tell him his behavior is bad.

As I like to tell my son, a sneeze is involuntary – stabbing someone with a pencil is not.

Let’s acknowledge that our children’s mental health is complex and nuanced. Let’s stop painting with such a broad brush. Causes behind our children’s behaviors aren’t always simple enough to be encapsulated in a snappy social media quote.

We need to do better

For a determined would-be school shooter, there’s always a way – until we address the underlying causes

 Only a few days ago, I had the opportunity to plant a gun in a school.

The doors were unlocked. There was no security guard. No office staff was signing visitors in. No one was monitoring the surveillance cameras.

It was Saturday morning, and I was attending my son’s recreational basketball game at a local public middle school. The school was wide open. I could have easily walked in with a duffle bag slung over my shoulder, an AR-15 and ammo hidden inside. If I was a student, I could have stashed the weapon in my locker, but the heap of lost and found items would make a good hiding place too. And just that easily, I would have secreted away a weapon for easy access.

There’s always a way to get a weapon into a school. More than once I thought about this as I watched students at my daughter’s charter school pass through metal detectors. They pulled three-ring binders, laptops, cell phones – anything with metal – from their bookbags and passed them around the detector. But couldn’t a pistol be hidden in a binder and pass into the school undetected?

As controversy swirls around efforts to keep guns out of schools –school officers, armed teachers, wanding, metal detectors – we must remember these steps alone cannot protect against every determined and resourceful would-be school shooter. It’s not enough to try to stop violent plans already in the execution stage. Instead, we must understand what leads young people to act violently and implement comprehensive, proactive measures to address the underlying causes.

It's not enough to try to stop violent plans already in the execution stage. Instead, we must understand what leads young people to act violently and implement comprehensive, proactive measures to address the underlying causes. Click To Tweet

Dr. Terry Levy of Evergreen Psychotherapy Center co-authored “Kids Who Kill: Attachment Disorder, Antisocial Personality, and Violence” in the aftermath of the Columbine school shooting. In it, he pointed to evidence of the relationship between early childhood trauma and violence.

Research has shown elevated cortisol levels caused by early childhood trauma,  typically chronic abuse and neglect, can impact a young child’s brain development. As a result, they may struggle with emotional regulation, linking cause-and-effect, abstract thinking, and other high-level brain functions. Not all, but some of these children may become aggressive and violent.

The correlation between early childhood trauma and violence is frightening given the number of students at risk. According to the Child and Adolescent Mental Health Initiative at Johns Hopkins, almost half of all children have experienced at least one type of childhood trauma. As a result, a staggering number of students walk into our schools every day with a festering wound borne of childhood trauma. Most often, the wound is unrecognized and untreated. At best, we might slap on a band aid, but rarely do we treat the underlying trauma.

We’ve known about the link between childhood trauma and violence for 20 years, yet little has changed. Our society does not recognize the devastating impact of childhood trauma on it’s victims or the collateral damage on our community as a whole. We do not prioritize funding for research needed for prevention and meaningful treatments. And as a result, our communities continue to face acts of violence from young people.

Just last month we learned about four North Carolina (my home state) middle school students who were planning a Columbine style attack on their school. This was thwarted, but you can be sure many other future attacks will not be stopped in time. For a determined would-be school shooter, there’s always a way.

Childhood trauma is an epidemic in our society and without treatment, children will not heal and will have little hope for a happy and productive future. For some, their trauma wound will grow so unbearably painful they’ll lash out violently. No metal detector, locked door, gun sniffing dog, or wand will stop them.

Child-on-Parent Violence (CPV)

What happens when your child becomes violent … with you

Under my desk is an antique iron. It has been there since the day my mother hid it from my teenage son. That day, attempts to get him up had repeatedly failed. He was hungry but refused to eat, he became increasingly volatile until eventually he threatened to hurl the iron at my head.

I’d had enough objects thrown at me in the past to not take any chances. I ran out of the house and for the first time called the police. While I waited for them, my son punched through a window, the resulting cut narrowly missing his artery.

While some may find this shocking, for others it’s a familiar story….

Read the full story from The Guardian here.

We need to do better

School Shooters: What’s Their Path To Violence?

February 10, 20197:58 AM ETHeard on  All Things Considered

Many, though not all, of the perpetrators have experienced childhood traumas such as physical or emotional abuse, and unstable families, with violent, absent or alcoholic parents or siblings, for example. And most have experienced significant losses.


For example, the defendant in the case of the Parkland, Fla., shooting last year had lost his adopted mother to complications from the flu just a couple of months before the school attack. His adopted father had died when he was a little boy.

Read the full article here.

Don’t miss these posts:

My take on the Parkland Shooting, published by the Sun-Sentinel.

The Making of a Murder, published by The Chronicle of Social Change

Loss of Caleb, published by the Institute for Attachment and Child Development

Book Reviews

RAD and Developmental Trauma in Fiction

These popular novels are twisty, psychological thrillers with surprise endings. They each feature a child with developmental trauma and/or RAD. Some details are true-to-life while others are just fiction…

Defending Jacob

Andy, a district attorney, believes his son Jacob, diagnosed with RAD, is innocent of the murder he’s been accused of. Andy puts all his efforts into Jacob’s defense despite mounting evidence against him. But is Andy really innocent?

The Foster Child

Psychologist, Imogen, refuses to believe her new patient 11-year-old foster child Ellie, is dangerous. She’s determined to protect Ellie from the distrustful and cruel adults and children around her. But is she the one who needs protecting?

Baby Teeth

Hanna is a difficult, non-verbal child whose mother is chronically ill. She’s adored by her dad, but mistrusted by her mother, Suzette. After Hanna breaks her silence with whispers threats, bad things begin to happen. Is Hanna really dangerous?

What’s just fiction…and what’s not.

*** WARNING! SPOILERS BELOW ***

When 14-year-old Jacob is accused of murdering a classmate it seems impossible – especially to his father, Andy, who is the local district attorney. Jacob is evaluated by a psychiatrist who diagnoses him with Reactive Attachment Disorder (RAD). The psychiatrist tells the family it is “unusual” for a kid to develop RAD without experiencing any abuse, neglect, or trauma. As the investigation gets underway, Jacob’s mother Laurie begins to question his innocence.
Jacob is ultimately exonerated of the murder. A few months later, however, his girlfriend mysteriously disappears. Andy again defends Jacob vigorously and will not consider the possibly he’s capable of these crimes. However, the truth dawns on Laurie as incriminating evidence mounts. Laurie is deeply conflicted by fear, guilt, shame, love, and desperation. To atone for herself, and to save Jacob from himself, Laurie purposely crashes her minivan into a concrete barrier, killing Jacob instantly.

What’s just fiction – It’s impossible to have with RAD without an underlying trauma per the DSM-IV diagnostic criteria. The author could have incorporated one of the causes of RAD in a “typical” biological families into his plot. Also, it’s unlikely for a child with RAD to be homicidal, as Jacob is, unless he has other serious co-morbid mental illnesses.

And what’s not – The story effectively portrays the common RAD symptoms of extreme manipulation and how father’s often do not “get it.” Also, the conflicted feelings of the mother are realistic and true-to-life. While her ultimate actions are unthinkable – real-life mothers of children with RAD may understand her desperation.

Read Defending Jacob

Ellie, an 11-year-old foster child, the only survivor of a house fire that took her entire family. She’s a child with a trauma background, but is now in a nice foster home. Unfortunately, she’s facing bullying from peers and dislike from teachers. Idealistic child therapist Imogen immediately lays blame on those around Ellie and is certain they are projecting their distain onto her. Wanting to shield Ellie from the unfair treatment of others, Imogen oversteps boundaries in the therapeutic relationship.

All too coincidental “accidents” happen around Ellie. For example, her foster brother teases her at dinner then wakes up and his mouth is super glued shut. Imogen is the only one who believes Ellie is the victim, not the perpetrator. In an unexpected twist, it turns out Ellie’s foster sister, resentful of foster children coming in and out of the home, is to blame for many of the problems. However, in the final scene we find Ellie flicking a lighter and contemplating her future. We realize she murdered her family and was complicit in what happened in the foster home.

What’s just fiction – While these situations can be difficult for siblings, the foster sister’s actions seem highly unusual and unlikely. Also, the book portrays many of Ellie’s responses as involuntary which is not always the case for children with developmental trauma. They can be angry and act out quite willfully.

And what’s not – While Ellie’s behaviors may seem over-the-top, unfortunately, they are all to familiar to parents of kids with RAD. The story also effectively captures how a therapist can be manipulated and mislead in these situations complex situations.

Read The Foster Child

Hanna is a difficult, non-verbal, 7-year-old. Her mother, Suzette, has a debilitating medical condition that has left her distant. While Hanna is not formally diagnosed with RAD, the hallmarks are there and likely a result of having an unavailable primary caregiver. Hanna is highly intelligent, but has angry outbursts and is kicked out of kindergarten. Suzette must homeschool Hanna who grows increasingly defiant, rebellious and resentful towards her. Meanwhile, Hanna is charming and loving with her father, Alex. He sees only an obedient, clever child. Hanna’s first words are whispered threats towards Suzette. And as Hanna begins to target her mother with physical violence, Suzette grows increasingly fearful.

It’s only after the situation has grown frighteningly dangerous that Alex happens to witness Hanna’s violent behavior for himself and understands there is a problem. Husband and wife work together to send Hanna to a residential treatment facility and they quickly accept the reality that she will live there indefinitely. In a sinister final twist, Hanna realizes what she must do. She must follow the rules at the facility so she can go home, get rid of her mom, and have her father all to herself.

What’s just fiction – The ease at which the family finds residential treatment for Hanna, and how quickly they accept her need for long-term care does not mirror the reality of most real-life families in this situation.

And what’s not – Most children with RAD target their mother, as Hanna does. They also hide their behavior well from their father and this can cause serious marital discord. While Hanna’s behaviors seem too extreme to be believable, parents of kids with RAD know they are in fact not that far fetched.

Read Baby Teeth

Most Popular, Parenting advice

5 lessons I wish I’d known when I first adopted a child with developmental trauma

My husband and I adopted Devon out of foster care when he was 3. Devon has complex developmental trauma disorder (DTD, commonly diagnosed as reactive attachment disorder). This often occurs when a child experiences chronic abuse or neglect early on and results in disrupted brain development. Adoptive parents like myself aren’t given a how-to manual for raising kids with a history of trauma. I very quickly found myself drowning with no life boat in sight.

This is why I’ve been working on telling my story through a memoir. I hope to educate others about the challenges parents like myself face and to raise awareness about the lack of treatment. Throughout the writing process, I relived painful memories. I grappled with guilt and many regrets. As they say, hindsight is 20/20 and I’ve learned a great deal through reflecting on my own story.

Here are 5 lessons I wish I learned earlier in the journey of raising Devon:
1. I should have given up and gotten help earlier.

For years, I tried to parent Devon on my own. But no matter how hard I tried, nothing worked. Unfortunately, those failures and missteps weren’t merely wasted time. They exacerbated my son’s condition, derailed our relationship and led to a decline in my own mental health. Meanwhile, my other children were living in a home that was highly volatile and unhealthy, causing them secondary trauma.

I often wonder how things might be different if I’d gotten help in the years before Devon was 10-years-old. Don’t get me wrong, writing my memoir also solidified my belief that most professionals aren’t versed in developmental trauma and few treatments are available. However, perhaps with support, my family could have avoided some of our darkest moments. Maybe Devon would have better coping skills and a brighter future. Unfortunately, I didn’t know the warning signs and had no idea where to find help.

2. I was worse off than I knew.

I stopped taking phone calls and opening my mail. My hair was falling out. I knew I was overwhelmed, frustrated, and depressed but didn’t realize I was suffering from post-traumatic stress disorder from the ongoing stress (see How Parents of Children with Reactive Attachment Disorder Develop Post-Traumatic Stress Disorder). I was hanging onto the very edge of sanity by my chipped fingernails. Raising a child with a trauma background took its toll emotionally, physically, and spirituality. It irreparably damaged my marriage and relationships with family and friends.

When writing my memoir, I was shocked to realize just how difficult things were. I saw that there was a gradual shift from manageable to completely out of control. For example, at the time, I didn’t recognize when my son’s tantrums shifted to rages. My mental health was declining more than I realized and did not begin to improve until I started seeing a therapist and went on antidepressants. In retrospect, I realize I should have started taking care of myself far earlier than I did.

3. I could only change myself.

At the time, I was so sure I could “fix” Devon – but I was wrong. Early trauma can tamper brain development and requires specialized treatment. It’s like having a child with leukemia – you can feed them organic chicken soup, tuck them in with warm blankets and curl up beside them to read stories – but, you can’t treat the disease. For that, children need professional treatment. “Many people mistake children with DTD as typical kids going through a tough time or phase. They think love and structure will make all the difference. Unfortunately, it’s often not that simple,” said Institute for Attachment and Child Development Executive Director Forrest Lien. “DTD is a disorder of the brain, not a developmental stage that they outgrow with time or ‘good parenting’. Parents can’t heal them through love alone. They need effective professional help.”

I very nearly had a nervous breakdown before acknowledging what was beyond my control and identifying what I could change. The parenting challenges I was facing were difficult enough without having marital issues, an air conditioner on the fritz and the stress of a difficult boss. What I could do was improve my ability to cope and my capacity as a caretaker by addressing these things. To survive, I had to find ways to raise my own resilience by decreasing or eliminating other stressors in my life.

4. Burning bridges with clinicians is a bad idea.

Some mental health professionals say the hallmark of a kid with RAD is a “pissed off mom”. That was me. As a result, my son’s therapists pinned me as unreasonable, uncaring and angry. I thought they’d give me the benefit of the doubt and assume the best about me. I was wrong. I spent two years torching bridges before I realized the value of building partnerships, even with professionals with whom I disagreed.

I started making progress in getting my son better treatment when I began to hold my cards close to the vest. I forced myself to listen then respond calmly and reasonably. Why is this important? Some of those professionals became my best allies when I needed referrals for treatment, favors called in to get Devon into new placements and back-up documentation when he made false allegations.

5. My family really didn’t get it.

When my father read a draft of my memoir, he found it so painful he had to take breaks from reading. My mother, after reading it, apologized for not understanding and being more supportive. It took my parents walking in my shoes, through the pages of my memoir, to truly grasp how difficult my life was. For some reason, I’d always felt their minimization of my challenges raising Devon was in part willful – as if they just didn’t want to believe it.

I now realize, they truly didn’t “get” it. That makes sense. If my life were a movie, I’d be the first to say the script was over the top and totally unrealistic. Before I adopted, I never imagined a child could have behaviors as extreme and unrelenting as my son does. It’s easy to become defensive with family and friends, but, in retrospect, I wish I’d done more to help educate them about developmental trauma disorder and reactive attachment disorder with movies like The Boarder and through other online resources.

Learning from our stories

It’s hard – impossible – to see the big picture when you’re just trying to stay afloat while parenting a child with developmental trauma. We’re often so caught up in our day-to-day moments, we don’t have time to reflect. We then fail to take a strategic approach to parenting. I wish I’d had the opportunity to benefit from the stories of others instead of learning the hard way.

I encourage parents of children with a trauma background to join online communities like Attach Families Support Group and The Underground World of RAD. We can all learn from each other’s experiences and support one another along the way.

First published by IACD.

RAD and related diagnoses

RAD, DTD – What’s all the controversy about?

Tweets. Facebook messages. Verbal knockouts. One too many times, I’ve been told reactive attachment disorder (RAD)—the result of a child’s early trauma—isn’t a “real” diagnosis. When parents like me hear that our child’s diagnosis is fake, bogus, or phony, it’s like a kick in the stomach. We feel invalidated, misunderstood, hurt, angry, and frustrated.

I’ve even had more than one mental health professional question my son’s diagnosis of RAD. I’m not sure if this stems from a lack of education, of effort, or of something else. Here is what I, and other parents raising children like my son, know for certain—we know RAD is “real” because we’re living with it.

Don’t miss out on this post: Raising a Child with Developmental Trauma

Parents know firsthand the heartbreak and frustration of raising a child who cannot receive or return our love…and what that looks like in the privacy of our own homes.

A new diagnoses for early trauma

To complicate matters, there is another diagnosis outside of RAD to explain the effects of early trauma. Many clinicians are advocating for the elimination of the RAD diagnosis altogether in lieu of developmental trauma disorder (DTD).

The term DTD was coined by Dr. Bessel van der Kolk who I recently heard speak at the 2018 ATTACh conference. Over the three days of that conference, I had the opportunity to learn more about the DTD diagnosis and the controversy attached from leading researchers and clinicians and I walked away with a new perspective…

Here’s what I heard:

  • We don’t like the label “RAD,” but we totally get it. We understand the extreme behaviors and challenges parents are facing on a daily basis.
  • We want to partner with parents because we believe healthy relationships with adoptive parents are the key to healing for these kids.
  • We know it is very difficult to find and access effective treatments for the impacts of early trauma. We’re advocating every day for adoptive families and focusing our research on meaningful treatments for trauma.

As I absorbed more about the DTD diagnosis, I realized parents and professionals are talking past each other on this issue. These professionals aren’t denying our experiences. They’re questioning how we categorize, label, and communicate about it.

What can we agree upon?

  1. Having a correct diagnosis is important. Children with early childhood trauma are often misdiagnosed and therefore don’t receive treatment. Furthermore, the RAD diagnosis is only the attachment piece of the puzzle. There are a number of diagnoses frequently given to victims of early childhood trauma including PTSD, conduct disorder, ADHD, and RAD. No one disorder covers the complexity of the issues our children face.
  2. Attachment is only one of the ways early childhood trauma impacts kids. We already know this as parents. Our kids have learning disabilities, cognitive issues, developmental delays, emotional problems, as well as attachment issues. In fact, most of our kids have an alphabet soup of diagnoses to cover all their symptoms
  3. Regardless of what the diagnosis is called, parents just want help. We’re desperate for treatments that work, therapists who understand, schools where our kids can be successful, more awareness in our communities, and strategies to better parent our children. We want our children to heal and thrive.

What’s in a name?

The Diagnostic and Statistical Manual of Mental Disorders (DSM) is the guide mental health professionals use to diagnose mental disorders. It’s used by providers to submit insurance reimbursement claims. RAD was added to the DSM as a diagnosis in the 1980s. Three decades ago is a long time! Neuroscience has made huge advances and it’s time for the DSM to catch up.

Here are definitions of the RAD and DTD diagnoses in a nutshell:

RAD is caused by childhood neglect or abuse which leads to a child not forming a healthy emotional attachments with their caregivers. As a result they struggle to form meaningful attachments leading to a variety of behavioral symptoms.

DTD is caused by childhood exposure to trauma. As a result they may be dysregulated, have attachment issues, behavioral issues, cognitive problems, and poor self esteem. In addition, they may have functional impairments in these areas: Educational, Familial, Peer, Legal, Vocational. (footnote)

As you can see, the DTD diagnosis brings the impacts of childhood trauma under one umbrella. It enables mental health professionals to take a holistic approach to our children instead of piecemeal treatments.

Experts petitioned the American Psychiatric Association (APA) to have the DTD diagnosis added to the latest version of the DSM. The request was denied. One cannot help but wonder the impact the health insurance industry had this decision. In fact, Bessel van der Kolk made this point at the ATTACh conference, urging mental health professionals and parents to become politically active around this issue.

While the APA rejected the diagnosis in this latest version of the DSM, leading researchers and experts have embraced the DTD diagnosis. For example, the Institute for Attachment and Childhood Development is not waiting for the inclusion of DTD into the DSM in order to properly acknowledge it.

When mental health and other professionals frown at the RAD diagnosis, they’re not invalidating our very real experiences. On the contrary, they’re recognizing that the current diagnoses, including RAD, don’t adequately describe the severe and devastating impact trauma has had on our children. They’re advocating for more research, treatments, and funding for our kids.

This mom’s resolution of the diagnoses for trauma

Until DTD is added to the DSM and/or covered by health insurance, to embrace the diagnosis still poses issues for parents. Treatment and care for children with early trauma backgrounds is expensive. The DTD diagnosis doesn’t currently qualify for insurance reimbursements. So, for now, I’m hanging onto my son’s RAD diagnosis. For better or worse, that’s how our healthcare system works.

When mental health and other professionals frown at the RAD diagnosis, they’re not invalidating our very real experiences…they’re advocating for more research, treatments, and funding for our kids.

However, I’m thrilled the mental health community is recognizing the devastating scope of impact early childhood trauma has on our children. I’m optimistic about the promising advances in neuroscience that are leading to new treatments. The DTD diagnosis is a major step forward in helping children like mine, who have suffered early childhood trauma, to heal and thrive.

Footnote: http://www.traumacenter.org/products/pdf_files/preprint_dev_trauma_disorder.

Originally posted by IACD.

Parenting advice

When you feel like you’re on the verge of a nervous breakdown…

Unless you’ve lived through a child’s relentless screaming, violent outbursts, physical aggression, and extreme manipulation – hour-after-hour, day-after-day – it may be hard to fathom the long term impact on caregivers.

But, the truth is, it can feel like you’re on the verge of a nervous breakdown.

Does that seem a bit melodramatic? Before you scoff, consider that hardened terrorists have been “broken” by being subjected to a continuous 24-hour stream of, “I Love You,” by Barney the Purple Dinosaur. Here’s how a US service member explained the impact of this psychological tactic to CNN: “Your brain and body functions start to slide, your train of thought slows down and your will is broken.”(1)

If the onslaught of an innocuous children’s song is enough to break a terrorist, it’s not hard to imagine how parents of children with serious mental illnesses like reactive attachment disorder (RAD) suffer from post-traumatic stress disorder (PTSD) , anxiety, depression, and more. Or to understand how they become angry, afraid, frustrated, and hypervigilant. At some point, their lofty parenting ideals end up crumpled at the bottom of the trashcan along with broken toys, shredded family photos, and burnt meals. They reach their breaking point.

I remember when I reached mine.

My son Devon’s behaviors had been unmanageable and escalating for five years. On that day, he kicked his legs and pumped his arms like a toddler in the throes of a tantrum. Sick to death of the tug-of-war, I surrendered. Or, at least I tried to. I handed him the extra pop tart he was screaming for, but he hurled it away, shrieking as if I’d handed him a coiled snake.

As Devon’s theatrics dialed up, my heart was like the rapid fire of a machine gun. I wanted to hurl him into a wall. Instead, I clawed my fingernails along the sides of my face to vent my anger on myself instead of him.

Fingers shaking, I texted my sister who lived next door: “OMG. I can’t take this. I just want to die.”

I was desperate to stay calm. To maintain control. But a runaway train had slammed into me and I was careening forward. I was frantically pumping the breaks, but there was no stopping.

Perched on the edge of the sofa, I squeezed my eyes shut, just for a moment, rubbing my temples. My eyes flew open as Devon loomed up in front of me.

Spit slapped me across the face.

I lurched up, dry heaving, desperately wiping the stringy mess off with my shirt sleeve

“Stop it! Enough! That’s enough.” My voice was shrill. Screaming. “Just stop it!”

He flung himself backward on the carpet. As I reached for him, he kicked me. 

My sister rushed through the door. Devon’s screams ratcheted up as she pulled me into the bathroom. “You need to take him to the hospital.” She jolted me out of my hysteria.

I held my side, panting. “I can’t. It’s a waste of time.”

“Someone is going to get hurt.. Take him to the hospital. Take him. Now.”

Taking Devon to the hospital that day didn’t result in any meaningful treatment for him, but it was an absolute saving grace. I’m only human. I wish I could handle the relentless pressure and onslaught of raising a child with challenging behaviors. I wish I was superhuman. But I can only take so much. Thankfully, I had my sister to help me that day.

What not to do

The challenges we face every day as parents of children with RAD are real and daunting. Because there are no quick fixes or easy answers, well-intentioned parents sometimes act out of desperation and implement solutions that are dangerous and abusive:

    • Bed “forts” or other types of cages to keep a child contained in their bed.

    • Doors that lock from the outside keeping a child in their bedroom.

    • Sealed windows to prevent a child from climbing onto the roof or running away.

    • Surveillance cameras capturing footage of a child in compromising positions.

    • Supervising an older child while they dress, shower, or use the toilet to prevent them from engaging in unhealthy behaviors.

  • Restraining a child with straps, cuffs, etc to prevent them from causing property destruction or acting out with physical aggression.

It is understandable that parents are tempted to turn to these as last resort strategies, but it’s imperative to remember the ends don’t justify the means. These “solutions” are fire hazards, violate your child’s privacy, are unsafe, and likely illegal in your state.

But let’s get real…

For parents, this can be a no-win situation.

For example,

If your child climbs on the roof they could fall off and seriously hurt themselves.

If you don’t prevent your child from climbing onto the roof, you may be considered negligent.

If you secure their door and windows, you may be considered negligent.

This is our reality: Our kids need to stay in their bedrooms at night. Unrestrained, our kids harm others in the family and create thousands of dollars in property damage. Our kids engage in self-harm, take drugs, and more when they are unmonitored. These behaviors are also unsafe, illegal, and dangerous.

Still, the “solutions” listed above are not viable options. We must find other ways to respond.

What to do

If you feel your child’s next violent outburst may take you over the edge, as though you’re about to snap, here are “last resort” options that you may need to consider:

    1. Camp out at your local mental health emergency room.

    1. Have local crisis emergency services on speed dial.

    1. Explore residential treatment options.

  1. Involve juvenile justice.

Hopefully, you won’t have to take these steps. But, unfortunately, there aren’t perfect, or even good, solutions to this tragic issue. Sometimes this is what it takes to keep your family safe.

Here are some practical steps you can take to keep things from escalating to the point where you have to take such drastic steps.

    • Persist in finding treatment. While it is very difficult to find effective treatment for RAD we must remain vigilant in our search. As our children grow older, their behaviors typically become increasingly unmanageable. Getting therapy and treatment early is key.

    • Take care of yourself. This may seem completely out of reach, but start small with our self-care list for frazzled parents who don’t have a moment to spare.

    • Get professional help for yourself. Talk with your doctor about treatments for anxiety, depression, and other areas where you are struggling. Seeing a therapist can be worked into even a packed schedule with the growing number of therapists offering online sessions.

    • Have an emergency support person. It is critical that you have a person you can count on when you can no longer cope. Alternatively, you may need to rely on local crisis services in your community.

    • Be self-aware. Take notice of a rapid heartbeat, unnatural thoughts, feelings of hopelessness or excessive anger. Do not ignore these warning signs and get help right away.

  • Find support. Family and friends are often unaware of the struggles we face. Here’s a letter that may be helpful in educating them. Also, online Facebook support groups like The Underground World of RAD are convenient ways to connect with others across the country for support.

There are no good solutions for families in these predicaments. You’ll likely be forced to choose the best of several bad options. Take the proactive steps outlined above, never resort to dangerous strategies, and be persistent in demanding the care your child needs. Your child’s well-being, your mental health, and your family’s security depends on it.

Footnote:
Burnett, Erin. “Barney Song Used as Torture?” CNN, Cable News Network, 31 May 2012, outfront.blogs.cnn.com/2012/05/31/barney-song-used-as-torture/.

Image credit: https://www.buzzfeed.com/leonoraepstein/this-is-the-guy-who-played-barney-for-most-of-your-childhood?utm_term=.yy1KrEP9gP#.femK6B9Oo9

In the News, Stories from other parents, We need to do better

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.”

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.”

51+iD8IpeML._SX331_BO1,204,203,200_.jpg
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.

Tips to navigate "the System"

What Social Workers Need to Know When Working with Adoptive Families

By brave adoptive parent and advocate Pernell Meier

Social workers have been an ever-present part of my family. Over the course of 13 years, we have parented 7 children from foster care, 5 of whom we adopted. In that time, we have had countless social workers in and out of our lives. Some have been rock-stars and stepped-up for our family and kids, advocated and pulled strings. Others have been toxic and blatantly destructive to our well-being. And the vast majority have fallen somewhere in the middle – neither appreciably helpful, nor actively working against us. Though these workers were generally decent people with their hearts in the right place, I’ve been struck by how much even caring and well-meaning social workers can be unintentionally damaging…

This amazing post goes on to provide concrete ways social workers can support adoptive families:

#1 – We desperately need your help.  
Life with an emotionally disordered child, particularly one with attachment disorder, is profoundly hard…

#2 – We need to be believed.
Most of us present one way to the world and another way to those closest to us. They can turn on the charm and show their absolutely impressive best sides to you, while five minutes later becoming unimaginably cruel to us. I know that this is hard to believe…

#3 – You might be one of the only persons who we can talk to.
Most adoptive parents of high-needs kids have the same experience – friends and family fall away. The challenges are just too hard for people to process, so avoiding it is much easier. And venting to people can bring forth the inevitable, “You did this to yourself!” comments

#4 – We expect that you will be educated on these issues.
Over the years, we have found such an unimaginable lack of basic education on matters related to trauma, prenatal exposure and attachment that the process of trying to educate and explain becomes draining. We are turning to you as an expert…

#5 –  When we tell the truth about our lives and our children, this does not mean that we do not love them or lack commitment.
Telling social workers about what is really going on at home backfires and gets used as ammunition against us to further cement the workers’ original views of the family. This atmosphere creates self-censorship as the adoptive parents come to view most social workers as either not helpful or detrimental.

#6 – We don’t speak social work.
You have your own specific acronyms, and ways of speaking and understanding things, just as all professions do. But when you are talking to us, please consider that we are not always going to know what you mean…

#7 – No, we are not triggering them.  
Ok, let’s be real. Sometimes we do, just as any parent will occasionally handle a situation poorly.  But, these children do not turn into raging, mean, or out-of-control persons because we are in general doing something to them that makes them that way…

#8 – Yes, we have skills.  
We have read more than you could possibly know, called and talked with anyone we could, watched videos, taken trainings, and turned our values and our way of thinking inside out to try to make things better…

#9 – Your meetings can be painful and often feel like a waste of time.
Please know that we are likely dealing with quite a few different social workers, support persons, doctors, therapists, school officials, etc. and we have a lot of meetings that we need to attend…

#10 – You are not our child’s friend.
When you approach interactions with our children from the perspective that the most important thing is having a positive relationship between the two of you, you inadvertently damage our parental relationship because you put on those empathy blinders that do not allow you to even see, let alone confront deceit, poor behavior, manipulation and destructive dynamics…

#11 – You continually undermine us.
You set meetings with them without even bothering to tell us, thus keeping us out of the loop and making us play catch-up. You buy them things that we have said “no” to. When they have been behaving terribly and break the rules, you take them out for ice cream or fancy coffee…

#12 – You have enormous power over our lives and that is frustrating and scary.  
As the gatekeeper, you are the one who gets to decide if we “need” something or we do not. When you deny us what we’re asking, please understand that this is “just business” to you and to us it feels like a hot knife slicing through us…

#13 – You get to go home.
We don’t. This is our home. This is our life. At the end of your long, stressful work days trying to make the world a better place, you get to go home to a quiet house or to your attached children, where your pets and other vulnerable children are not being abused, put your purse or wallet and car keys down without thinking to lock them away, and shrug off the day’s worries. For us, our homes often feel like prisons…

#14 – You cannot imagine our grief and our guilt.
Often co-mingled with our grief is our intense guilt. Raising a child with special needs seems to inevitably bring this on as we often second-guess and agonize over so many of the decisions related to our children’s care. Often our lives are so impossible that absolutely nothing feels like the right thing…

#15 – We need you to be honest and acknowledge your mistakes.
We need to trust you because the repercussions of you either baldly lying, withholding essential information, or manipulating us to obfuscate the truth can be devastating. In this power imbalance, you hold the cards. We have little recourse when you do things that create harm…

#16 – You hurt the kids.
Social workers will come and go, but we will always be there. You are not their parent, we are, and the best thing you can do to help them is to help us with the excruciatingly hard task of standing by them…

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