Author: Guest

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.


California Looks To Lead Nation In Unraveling Childhood Trauma

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.

What is Conduct Disorder?

I stand in the bathroom stall of the courthouse, texting a friend. “I can’t do this,” I write and lean my head against the cold partition of the stall.

“You’ve got this,” she replies. “Breathe, Honey.”

I hear the restroom door open and a singsong voice I recognize as my daughter, Debbie, quietly calls my name. I quickly pull my feet up, trying to be invisible. “I know you’re in here, you stupid bitch. Come out, come out, where ever you are.”

My breath halts and my pulse pounds in my ears. Be still, be quiet, I think. Maybe she will go away.

Footsteps approach as door after door of the stalls bang open. I quake in fear as the steps come nearer until I see her shoes in front of my door. 

“You can’t hide forever,” Deb says in a lilting, singsong voice. She quickly tells me how plans to murder me and what she will do with my body before setting it and my home on fire. She reminds me that she has had months to perfect her plan, while in juvenile detention, without my interference. 

I don’t respond.

Tiring of her game, Deb’s voice acquires the hard edge I’ve come to associate with rage. “Get out here, you bitch. I hate you. I want to see you scream as you die. Your precious boy will die, you will all die.” I cower behind the door as her diatribe continues; the words increasingly vulgar.

Suddenly the door into the hall opens and a new voice speaks. “Deb, are you in here?”

I hear Deb whisper, “Shit.” Then she begins to sob. 

“Baby, what’s wrong? What happened?” I recognize the newcomer as Deb’s caseworker.

Still sobbing, Deb says, “I saw Mommy come in here. I just wanted a hug. She hates me.” She wails and sobs as though her world has just ended. “Why doesn’t she love me, Miss C?” 

Debbie is only 14. Debbie has Conduct Disorder.

What is Conduct Disorder?

The DSM-5 (the manual used by mental health professionals to make diagnoses) defines Conduct Disorder (CD) as “a repetitive and persistent pattern of behavior in which the basic rights of others or major age-appropriate societal norms or rules are violated.”

Children with Conduct Disorder (CD) may exhibit behaviors such as:

  • bullying, threatening, or intimidating others
  • initiates physical or verbal altercations
  • physically or verbally cruel to others
  • physically cruel to animals
  • steals
  • forces someone into sexual activity or is sexually aggressive
  • frequently lies
  • deliberately sets fires or destroys property
  • lack of empathy
  • lack of remorse
  • grandiose thinking
  • highly manipulative
  • rages (or “tantrums”) lasting 25 minutes or more
  • inability to learn from mistakes
  • lacks critical thinking skills/has difficulties understanding abstracts
  • shallow affect
  • superficial charm/has a public and private demeanor
  • lack of fear

Recent scientific studies indicate CD is in part due to abnormal brain activity, as well as an under development of the amygdala and prefrontal cortex. The amygdala is known to be responsible for controlling aggression as well as the perception of emotions. The prefrontal cortex handles executive functions such as controlling short-sighted or reflexive behaviors in order to plan long-term goals, make informed decisions, and exhibit self-control.

But what does all of this really mean?

In simple terms it means that the child with Conduct Disorder has a brain that is structurally different from that of a neuro-typical child. Because of this difference, the child with CD does not respond to rules, discipline, and societal norms the way a typical child does.

Conduct Disorder is evidenced by some, or all, of the behaviors listed above. The spectrum of behaviors is wide and varies between mild to severe. The tendency to lie, manipulate, and gaslight are strong and seemingly innate behaviors.

Standard parenting techniques are not effective. Discipline, rewards for good behavior, star charts, and other techniques fall short of managing behaviors long- term. Conduct Disorder transcends race, ethnicity, environment, location, and socioeconomic backgrounds. Unlike attachment disorders CD is not always due to trauma, abuse, or neglect. However, many children diagnosed with Reactive Attachment Disorder (RAD) at younger ages are ultimately diagnosed with CD as teenagers. CD can manifest at 2 years old or 15 years old, and any age in between.

There are an estimated 7 million children in the U.S. alone with Conduct Disorder. This translates into approximately 1 in 10 children affected.

Love does not cure Conduct Disorder (CD), nor does being a model family. – Karen Huff, Compass for Conduct Disorder. Find support, community and resources @CompassforCD Click To Tweet

For families affected by CD, it can mean very little in terms of treatment. Children with Conduct Disorder do not respond well to traditional talk therapy. In general, these children will use the counselor to further manipulate caregivers. Some go so far as to employ triangulation, in which the counselor becomes the unwitting accomplice of the child to further demoralize caregivers. Medication cannot relieve the symptoms of CD but it may be prescribed for co-morbid diagnoses such as ADHD.

At present there are very few viable inpatient treatment centers for children with Conduct Disorder. Many programs state that CD is treated at their facility, however most apply standard practices toward the treatment of other mental illnesses to CD. This is highly inappropriate and may lead to further issues for both the child and family living with CD.

Often, families feel vilified and become isolated due to the harsh judgment they face. Family and friends lack understanding of what is happening and drift away, unable to provide support for something they seldom witness. Parents beg doctors and mental health professionals for help, only to be mocked and treated with derision. The community, hearing of the child’s disrespect and abusive nature when the police are called, make assumptions about the parents: too lenient, too strict, not enough activities, too many activities, set boundaries, spank him/her, it’s all because of poor parenting, they say. All this does it further isolate families who are living in a constant war zone, created by someone they love and for whom they are legally responsible. Love does not cure Conduct Disorder (CD), nor does being a model family.

If there are no treatment options available, what can be done?

Fortunately, CD is being researched more in recent years. Unfortunately for those living with CD, viable treatment options are still years in the making. The founders of Compass for Conduct Disorder realized the need for community support programs, resources for parents/caregivers, and early childhood detection and intervention.

Compass for Conduct Disorder is a nonprofit organization whose goal is to provide resources, services, and hope for those living with CD. In addition to a parent/caregiver support group, Compass also provides an information and awareness group, parent advocacy, crisis buddies, the Compass Peer Network for professionals to exchange information relating to CD, and an awareness raising campaign. In the planning stages is the Compass Child and Family Support Center, which will be geared toward children ages 2 to 5 showing early signs of Conduct Disorder, and their families.

If you have a child with Conduct Disorder, Compass for Conduct Disorder is a place to find support, resources, and community.

Website: www.compassforcd.org
Facebook: @CompassforCD
Twitter: @CompassforCD
Compass Cares: A Conduct Disorder Support Community
Compass for CD Information and Awareness


Karen Huff is the mother of four children, one of whom has Conduct Disorder.

She is the President for Compass for Conduct Disorder and an admin for the Compass Cares support group, as well as for the Compass for CD Information and Awareness group. 

Connect with her on Facebook and Twitter.


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

Illinois NewsroomJul 31, 2018

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

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

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

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

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

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

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

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

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

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

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

Out of options

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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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.

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…

Please be sure to read the full article here.

Adopted baby nephew

My youngest sister gave birth to a baby boy in 2008. She has had a substance abuse problem and has always been more concerned with what guy will pay attention to her rather than love her own son. For 18 months we watched as this little boy was always sick, always angry, and never cared for the way he should have been.

My now husband and I got him for a couple months in October 2009 and had made leaps and bounds with him but unfortunately nothing was legalized so when she wanted him back we had no choice but to turn him over to her. From then until January 2013 (he was 4 at this point) she stayed clear of me so I only heard stories from my mother about how out of control he was.

My husband and I were asked to keep him for a week and I went with temporary custody papers and a plan. We sat down with my sister and begged her to straighten up. We offered for her to live with us, to help her with school, to take her to her job, to give her a home with her son. There was no structure or stability in his life at all. She promised to take the help. During the next year we tried everything to get her, and even the father of my RAD, to step up and take care of him. She visited maybe 5 times in this time. I have a huge folder of every conversation.

Documentation is everything. In 2014 my husband got a job that would move us out of state. All hell broke loose. Letters were sent to the judge about us keeping him from grandparents, kidnapping him, etc. So we filed a petition to adopt him. We spent all summer locked in a battle with lawyers, ad lidem, visitation supervisors, and therapists. My sister went to the first, and last visit. That was it. She signed her rights away after that. She has since had another boy and is due any day with nother child… the other boy is worse than my RAD from what I hear. So, no change in her.

Then comes the grandmothers. They enabled their own children to be crappy and then blamed me for taking him away. They have never supported us and in fact have gone behind our back multiple times and allowed visitations, phone calls, letters, etc. Even taking my RAD to a prison behind my back. We had to cut off communication with all of them.

Now to my RAD, he turns 10 this coming week. Biologically My nephew and has despised me from the jump. We didn’t know about RAD until a year ago… too late…. he has harmed my other children, animals, has a fascination with fires that could have ended badly, steals, lies, fights me on everything. Peeing is his way to control and get back at us. Hundreds of times. We tried every kind of parenting trick. Nothing worked. Therapy? Nope. Still no support from family who say there was nothing wrong with him. We are too hard on him. He’s perfect for them. Etc.

The bottom fell out. In December we started looking into treatment facilities or boys home. We wanted extensive counseling for him but couldn’t find it. Either he was too young, no financial help, or the facilities were full. So, we had purchased a door ALARM for his room because he was up in the middle of the night and to us, that’s a safety issue. I made the mistake of telling my mother whom I was trying to repair my relationship with. Mistake. She called the other grandmother and they called CPS. I was drug tested, children were interviewed, pictures taken, the whole nine yards. I prayed and prayed and spoke the truth. CPS closed the case and I was done. The last 4 months have been the worst of my life. My RAD stepped up his peeing game and I threw in the towel. I called the paternal grandmother and we signed custody over to her. She is the lesser of all the evils in this.

When I told him he was going he was sad. He said she is the one who told him to lie to us so that’s why he did it. There is nothing I can do. Since he has been gone my home is completely different. We are happy again. 5 years living in chaos had taken it’s toll on me and I’m healing slowly. But it’s not easy. My younger boys miss their brother but know that it’s for the best.

We have been judged and outcast by family and friends, he continues to lie to us about certain things, and all I can do is document and report to our attorney. My own sister is looking for ways to stab me in the back.

They are bribing my RAD with gifts to be good and of course right now he is behaving perfectly. Everything is my fault. They aren’t doing anything for his mental health. All I can do is collect the information and thank God I am in a different state. He was put back into the same enviornment we tried to save him from, this time he is with his father who can’t even be bothered to take a paternity test or spend any time with him.

I think about what type of man he is going to turn into and my heart breaks. They have never taken the time to listen to how he has behaved in the last 5 years. They don’t believe in RAD. It’s going to turn out bad.

I wish it could have been different. I wish my sister would be a good mother. I wish I had kept him at 18 months. I wish that when we got him at 4 years i would have taken on the mother role instead of trying to try make my sister do it. I wish I had support from the grandparents. I wish that mental health programs were better. I wish I had been strong enough to keep him. You all know how a RAD brain works so you know all the obsticals we have faced.

Now we are trying to decide if he will stay where he is. He wants to come home. Now that he’s had a taste of what he’s been asking for he doesn’t want it anymore. But for the safety of my family, I’m not ready for that. And he’s only 10. I can’t imagine what he will be like at 15 or 20. Well I can, and it’s not good.

I will only adopt cats from here on out.

Since I was about 16, I have wanted to adopt children. Not babies, children. I really felt God had called me to it to help fill a niche. Most people want babies so the kids get left behind. I helped my husband get hooked on adoption after I married at 32. Well, before that. He knew that was how it would be well before the wedding. Heck, we had a fundraiser for it at our reception.

I had this incredible dream where I felt I had seen my daughter. It was so different from any other dreams. I remembered details. I still do. She was in Russia. She was 6. She had a little brother somewhere else. He was 2. I found out later that toddlers would be in different orphanages from older children in Russia. But Russia didn’t pan out. It was closing after that lady sent her son back there alone on a plane. I worried that by looking elsewhere, I was turning my back on God’s plan. Others assured me I was not.

Our children came in a way that looked like God had worked in it. Now we see it as dishonest. We heard about an agency that works with Poland. We set up a time to talk with them on the phone. But our cat died that day. So we talked the next. It was Monday. By Friday we had a referral. By the end of the year we were traveling. We only had to make one trip, though Poland is a two trip country. They asked us day 1, if we were sure we wanted to go through with this. The kids we small for their ages. They were 8 & 9 but looked 5 & 6. The boy spazzed out in tantrums. He hit us or his sister. We had heard of R A D. Still, I think anyone might be naive when they first face it. We thought it would get better.

It never got better. He got more violent. Daughter seemed okay by comparison. We were so busy putting out proverbial fires with him, we didn’t see her issues. We finally had him booked for assault when he was 12. He’d been hospitalized 5 times by then and spent six months traumatizing my older sister when she offered to take him in. He broke probation and was removed from out home.

Long story short: group home for delinquents, mostly truants. Got violent there. Very. Detention. MO Baptist Children’s Home. Violence. Hospital. MOBCH. Violence. Hospital. Level 4 security residential. Instigated other boys to attack staff. Fights. Safe rooms. Eventually, he decided to stop being violent. He moved closer to home. A couple different group homes then a residential with a transition program to transition him home. Family therapy with that was a joke. The therapist said just let both kids be verbally abusive to me and lie. At Christmas, he admitted to setting my sister’s house on fire two years before. Still he came home Good Friday of that year. On Mother’s Day, I awoke to him being violent. He went to the hospital and did not come home again.

Daughter: With him gone we could now see her issues. She lied, manipulated, triangulated, left her sanitary napkins in her underwear in the wash or threw them behind the dryer. She got worse with puberty. She stole and binged our food. We’d go to make dinner and find it missing. She is obese but told the school social worker that we didn’t feed her. She stole money, makeup, my underwear and other clothes. She shoplifted at least three times but none would press charges. She cussed us out almost daily, told us what to do, didn’t do as she was told. Didn’t do her homework. Looked up father/daughter porn on her phone and tablet. She was hospitalized twice. The last time was in October. She’d been refusing to go to school. I had to get up and watch her leave. Had to call the cops a lot to get her to school. She snuck back in after I went to work. Police were called to look for her. Found her at home. Said she was looking for something to kill herself with. She got new dxs: ODD and Severe Mood Disregulation Disorder.

In MO, you can legally move out of your parent’s home at 17. She decided in November that she couldn’t wait until April. She wanted to go live with my older sister (same one). She was occasionally violent and she was that day. She was going to be as bad as she had to be for us to say yes and let her go.

Of course now that sister says we threw our children away. That we were too strict and didn’t love them. She forgets that she kicked out my son before she knew it was him who set the fire. She forgets that she kicked my daughter out last month (she let her come back after 3 days). Brother and sister-in-law are adopting our son. Blames me for both their behaviors. Says we kicked son out. He forgets telling me, early on when son was still small, that we should give up, he was a lost cause. We didn’t then, still hoping. Now I’ve lost my brother.

So here we are, no kids at home (that’s the good part) but the loss of a dream, a calling, at least half my siblings. The fall-out is still falling. I lost my job and part of that can be indirectly attributed to our daughter. The trauma she put me through bled into my work.

On the plus side, I’ve gained safety and peace in my home. The only chaos is caused by kittens now.

I will only adopt cats from here on out. They’re my children now. I hope to host foreign exchange kids in the future. Other than that, I want to have only very limited contact with my kids. Son is doing better right now. But I can’t trust he won’t go back to violence as he has before. The wounds from my daughter are still too raw. She’ll be 17 in April. I hope she never moves back home again.

Alexandra

Today is Alexandra’s 12th birthday.

Over the last 16 months we’ve had people reach out asking why she isn’t in pictures etc. I have also posted a few times about reactive attachment disorder.

Alexandra no longer lives in our home. And she will not return to our home. That’s a powerful statement isn’t it? It’s definitely not one I ever thought I would make.

I’ll try to make this as concise as possible. Alexandra has always had issues…and that’s ok. No child is nor can they be expected to be perfect. We searched for help and continued searching when things didn’t work. We tried every therapy we could get involved with. I’m not going to get into our insurance and the joke of what they cover when it comes to mental health issues.

Alexandra was officially diagnosed with Reactive Attachment Disorder (RAD) when she was 9. RAD is hard…soooo hard to live and deal with. She was also diagnosed with early onset conduct disorder due to her destruction of property etc.
After her diagnoses she began to get more violent. Yes, I said more. We had many instances where one or all the kids were hurt. Both dogs had been hurt by her. She began really destroying property and making more threats. We continued with therapy. When our insurance wasn’t doing enough we went to the county. I sat in offices crying, begging them to help her, help us. They did. We finally got to where we were doing therapy 4-5 days a week, up to 7 sessions in a week including therapists in our home for hours at a time.

She would tell me that the day I died would be a great day in her life. She would remind me that she was getting bigger and stronger and I was getting older and weaker. I’ll never forget the look in her eyes.

When Alexandra shared her very legitimate plan to kill me (and apparently the rest after I was dead) I knew things had taken a very scary turn and more needed to be done. She shared her plan with one of her therapists and they stepped in. We spent 13 hours being observed in an emergency room before she was admitted to a psych hospital for a week. Her threats to finish the job when she got home, along with the documented history of behaviors, got her admitted to a residential facility.

I drove 6 hours round trip weekly for family therapy sessions. She would either ignore me or she would (and most often chose this) yell, scream and curse at me. In front of her therapist she would threaten to hurt and/or kill the other kids at home and said it was my own fault she wanted to kill me. While there, she treated them as she did us (stealing, lying, disrespect etc). She attacked other children as well. After 6 months they told us there was nothing more they could do for her. The county stepped in and Alexandra was transferred to another facility that was closer. I then spent the next few months driving 3 hours round trip weekly. Her behaviors didn’t change. She began making false allegations against staff and threatening to kill them.

Finally her therapist told me that Alexandra would continue to attack our other children if she came home. Social Services told us that if Alexandra attacked the other kids they would be taken out of our home because we couldn’t keep them safe.

Alexandra was given options. She could do her therapy and work on behaviors. We did not expect perfection but she was not allowed to attack or try to physically hurt the other kids. She had to make attempts to try to do better. She refused. She did not want to live where there were expectations and rules.

The professionals did not feel or believe Alexandra could be successful in what’s considered a normal home environment, definitely not one with other children. Through a lot of phone calls, emails and meetings it was “decided” that Alexandra would not return to our home. Being in such an environment triggers her behaviors and aggression.

We continue to pray for Alexandra. That she heals, that she gets the help she needs. We have told her repeatedly that when she is in a place where she can call without screaming at us we encourage her to do that. We want to celebrate her successes with her and if possible help when she needs it.

I know this is a lot for everyone to read. And before people wonder how we could let this happen I feel it necessary to be very clear.

Alexandra planned our murders.
Alexandra planned to make attempts on our lives until she was successful.
Alexandra physically and emotionally/psychologically attacked her siblings.
Alexandra never apologized for her actions.
Alexandra never said she wanted to come home.
Alexandra never stated she would even try to do better and never made any attempts to show us through her behaviors at the residential facilities.

We are heartbroken over her choices. So today on her birthday please pray for her…for her safety and for her healing.

Kyla

Rewind to five years ago. (Don’t I wish I could?) My then husband and I have enjoyed an empty nest for about 3 years after raising one daughter and two sons now 28, 29, and 30. I begin to push my husband toward my life long dream of fostering, and the adventure begins. After mounds of paperwork, fingerprints, and physicals, stacks of jammies and undies, toothbrushes and toys fill our hallway shelf in anticipation of our first placement.

So anxious, so naive. Foolishly, we accept a placement for a young sibling group of three. Sure that’s a bunch to take on at once, but hey, we had our own three in three years. We’ve got this. Plus, we’re told there are no reported problems with these kids who have been with an aunt and uncle for the year since their removal from their bio mom’s home. Are you laughing yet, dear reader?

Fast forward past the kids’ removal when our youngest bio son nearly dies when an infection ensues after a nasty spider bite. A few months later the youngest foster, Ashlee, then 4 1/2, returns to us. She has tantrums that can get pretty intense, is bossy and demanding, but we fall in love. Mom’s rights are terminated and despite being 56 and 57 with no prior intention of adopting, we can’t say no to this little sweetie who has won our hearts.

Besides the three littles, there are two older girls 10 and 12 years old. It looks as though they will not get placed and may have to go to a residential placement. My husband and I both feel a tug to take the 10 year old but I know in my heart this is more than we should bite off. When my husband actually begins to push, I take this as a sign and we begin the process that will be our undoing. Literally.

Yesterday, Kyla turned 15. In the four years she has been with us, she has stolen food, candy, gift cards, make-up, jewelry and most tragic…our smart phone and tablet. This last item allowed her to connect with sexual predators online resulting in her sending them explicit photos of herself and even an actual encounter in the woods of our neighborhood. Police report, rape kit, therapy.

Four years of therapy, most of it with a therapist specializing in connection for adoptive families. A week long hospitalization. Numerous runaways and tantrums resulting in visits by the police and CPS. Broken walls and doors. Charges of incorrigibility ending with a 2 month stay in juvenile detention. An attempt at an alternative living situation with her older sister’s adoptive family. And, the dissolution of my marriage as my husband’s anger became too much and I didn’t feel the girls were safe.

Last summer, after her guardians let us know they didn’t feel they could handle her, I found what I thought would be our saving grace. A way to keep her safe and get her through high school. A Christian boarding school for troubled teen girls, fully funded, welcomed Kyla to Kansas to join the other 14 girls being ministered to by a wonderful and committed staff.

Kyla thrived there at first, joining the volleyball team, making friends, enjoying the animals and farm setting. Then she began telling lies (lots of prior experience with that) and refusing to do chores. Lo and behold, there were consequences….something Kyla just cannot tolerate. She pulled out her arsenal of yelling, screaming, swearing, and running off. Behaviors she perfected while at home. These things the school expected and could handle.

When she didn’t manage to get herself kicked out to come home (where she had begged to leave whenever she didn’t like what we did), she needed to escalate behaviors. And escalate she did. She sexually molested her suite mate who reported to authorities. She sent sexually predatory type grooming notes to younger girls. She pushed a staff member and threw rocks at others. Finally, she succeeded in getting expelled and on February 6th, was flown home.

After having exhausted all know resources last summer when the guardianship failed, I planned to have to do the unthinkable and relinquish my parental rights. Perhaps the state would see the need to get her the residential treatment she needs and Ashlee would be able to grow up without this dysfunctional presence in our home and without the threat of insestual molestation. Hold the phone. Not that easy.

Turns out, if I hand Kyla back to the state, that’s abandonment. I am placed on the Central Registry, lose my teaching job and worst of all, lose Ashlee…the very one I am hoping to protect. Government logic. Oxymoron?

So, that brings me to today. Kyla is enrolled in our local public middle school. I have fully disclosed to the principal, counselors and social workers who have a safety plan in place. We had to rearrange rooms in my tiny 2 bedroom condo. Ashlee sleeps with me so that I can protect her. The past three weeks have been uneventful as far as behavior, if you don’t count Kyla taking and eating an entire Whitman’s sampler giving to me by one of my students on Valentine’s Day and her refusing to come home for two hours last Friday.

I have spent these weeks going from one phone call, appt, and lead. Pounding headaches, exhaustion and frustration. I believe I am not alone in experiencing what I’ve learned is called secondary trauma. I am glad I’m not alone and yet I wish I was. I hate to think so many of us are experiencing this debilitating condition.

Not sure how to end this post or how its contents will end….

Conduct Disorder (CD) – Early detection

First published by Milk & Hugs, and republished with permission.

The Worry…

Early childhood is a wondrous time of life, for both children and parents. Watching young minds form and bodies grow is one of the true joys of parenthood. As parents, we want the best for our children. We have dreams of who they will become, the type of life they may have. Ultimately, we want the best life for our children. What happens when our child is ill or has some sort of problem? We want to fix it. We are proactive and determined to find the solution.  But what happens when our child is still very young and our concerns sound vague (and perhaps a bit ridiculous) even to ourselves? How do we respond to the pediatrician who gives us that patronizing smile while telling us the child is just being a child, we are worrying over nothing, the child will “grow out of it.”

The first thing to know is to always trust your instincts, whether your child is 2 minutes or 20 years old. Instincts have served us well from the beginning of time and will continue to do so. It doesn’t matter if the child in question is your first or your fifth, trust your instincts.

What is normal?

Some things children will grow out of as they develop and mature. Toddlers are very self-centered and their demands on our time and attention are unlimited. Eventually toddlers grow into more reasonable beings as they learn how to express themselves. They learn it is much more fun to play with another child and share toys than to hoard all of the toys for themselves. They learn that hot stoves burn and that burns hurt. They learn that “no” actually has meaning and isn’t just a weird sound mom or dad makes all day.  

Between the ages of birth to four or five, a lot is going on developmentally. While that is wonderful, it can be a confusing time for parents. What is “normal” childhood behavior and what should be of concern? How do we bring it to the attention of others without sounding paranoid? Hopefully, this article will provide a few answers for parents of young children who are dealing with some behaviors that are the cause of concern.

…but is it really normal?

We’ve all heard the horror stories surrounding “the terrible twos.” This phase of your child’s life can actually span anywhere from a year old to as much as 30 months old. Tantrums can occur for numerous reasons and may include whining, crying, screaming, hitting, kicking, biting, and throwing things. A study published in 2003 suggests that nearly 75% of tantrums last five minutes or less. Most children under the age of five have one to three tantrums a day with varying degrees of severity. How do we know when to be concerned?

Donna Christiano’s recent Healthline article mentions these indicators as reasons for concern:

  • tantrums that consistently (more than half the time) include hitting, kicking, biting, or other forms of physical violence toward the parent or caretaker
  • tantrums in which the child tries to injure themselves
  • frequent tantrums, defined as tantrums that occur 10 to 20 times a day
  • tantrums that last longer than 25 minutes, on average
  • an inability of the child to ultimately calm themselves

Children with these behaviors may have conduct disorder. Learn more about Conduct disorder here.

When other parents talk about Conduct Disorder

In addition, parents from an online Conduct Disorder support group have described the tantrums more as “rages” due to the level of anger and violence the child displays. One mother states that her 3 year old daughter will scream, hit walls, hit other people, bite, kick, and destroy whatever she can get into her hands, for hours on end.

Parents in this same support group have provided a list of other behaviors they noted in their young children which were causes for alarm:

  • deliberately cruel to people or animals
  • early sexual aggression (age 2 and above)
  • manipulative (age 3 and above)
  • flat affect
  • superficial charm (age 4 and above)
  • inability to relate actions to the consequences that follow, such as time out
  • discipline causes further rage in the child, has no effect on behavior

What can you do?

What can you do if your child exhibits some of these more extreme behaviors? The first thing is to document the behaviors in a notebook or journal that is used exclusively for this purpose. Note the behavior, total elapsed time of the behavior (if a tantrum/rage, state the total time from beginning until the child is calm), date and time of the event. Also document your actions/responses.

Try to remove emotion and extra information from the list. It’s difficult to notice these specifics under stress but at least make note of the time, you can document the rest later. You are gathering documentation that will be much needed further down the road. At the beginning of the notebook, write down when these behaviors first began (age or date if you remember). Most of the time it has been so gradual that you cannot put an exact date to the first unsettling event but you can likely pinpoint an approximate age. Physicians like to see six to eight weeks of data. This can be difficult to do if your child is having 10 – 20 tantrums/rages per day. Do the best you can while remembering that documentation is your friend.

The Doctor Visit

After you have several weeks of information, take your child to his or her pediatrician. In a calm and confident manner, state what behaviors are of most concern to you. Have a list prepared and bring your notebook with you. Be concise and do not use vague language; no sort of, kind of, maybe, like, etc. Always speak with authority with regard to your child’s behaviors. Speaking in this manner shows that you are not an insecure parent who just needs a little patronizing from your child’s pediatrician.

Remaining calm indicates that you’re not some hysterical parent in over his or her head. Knowledge and a confident attitude are part of your tools to utilize in order to obtain an appropriate response from your child’s doctor. If you do not receive the assistance you need or feel that your concerns have been brushed aside, ask for a second opinion. Keep looking for answers and help until you find it.