Tag: PTSD

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

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

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

Siblings are too often the overlooked victims of the disorder.

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

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

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

Living in Fear

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

Here’s what siblings are saying:

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

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

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

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

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

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

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

What you can do

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

Internalizing dysfunction

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

Here’s what siblings are saying:

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

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

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

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

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

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

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

What you can do

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

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

Losing their childhood

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

Here’s what siblings are saying:

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

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

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

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

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

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

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

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

What you can do

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

Collateral damage

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

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

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

Find help for siblings of kids with RAD through RADSibs

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

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A to Z of Therapeutic Parenting

The a-z Of Therapeutic Parenting, Sarah Naish

My Rating: 5/5

We can’t always be therapeutic, no matter how hard we try, but we just need to be as therapeutic as we can, whenever we can. After all, we are only human!

– Sarah naish, adoptive parent and author

The a-z Of Therapeutic Parenting has real strategies and solutions for kids with developmental trauma. Enough said. Seriously, for most adoptive parents I could end my review here. That’s how incredibly rare it is to find practical strategies that make sense.

But let me explain more… Sarah Naish is the adoptive parent of 5 children and fostered for years. She speaks from experience and that’s clear. Her book isn’t full of platitudes or theory. It’s practical which is what parents like myself are desperate for.

The book begins with general information on developmental trauma and strategic approaches. This is well written and helpful in making the paradigm shift from traditional parenting to therapeutic parenting. However, what makes this a 5-coffee review is PART 2: A-Z OF BEHAVIORS AND CHALLENGES WITH SOLUTIONS which is an indexed guide of behaviors with strategies to address each of them.

Each behavior (Lying, Food Issues, Brushing Teeth, Charming, and so many more!) has its own entry. Let’s take “Lying” as an example since that’s a hard one to deal with. Here’s a taste:

  • WHAT IT LOOKS LIKE– This section includes descriptions of how the behavior may manifest in your home. The entry for lying includes: blatant lying, habitual lying for not reason, stalwart sticking to the lie…
  • WHY IT MIGHT HAPPEN – This is one of the best parts of each entry because it’s honest. It doesn’t assume all kids have exactly the same motive. Instead it allows for the fact that some kids may be more willful than others. The entry for lying includes: avoiding shame, lack of cause-and-effect thinking, dysregulation, momentary hatred of parent…
  • REALITY CHECK – Here’s where all adoptive and foster parents can connect. Naish gets personal and doesn’t gloss over how these behaviors can drive parents crazy. We’re only human after all! The entry for lying includes: the struggle parents feel over letting a child ‘get away’ with lying and the frustration we feel…
  • USEFUL STRATEGIES – This is the information we are desperate for. The entry for lying has 6 bullet pointed suggestions to try. They’re not all going to work for every child – and because Naish is a fellow parent – she gets that. The strategies are varied, practical, realistic, and useful. I won’t give them away. Go pick up a copy of the book

My Bottom Line
The a-z Of Therapeutic Parenting is practical and comprehensive help for foster and adoptive parents who are looking for parenting strategies. It’s obviously written from the trenches, not the desk of an academic. I can’t recommend this book enough- in fact, I’d add a dollop of whipped cream to my 5-coffee rating if I could!

Consider too joining the Therapeutic Parenting facebook group founded by author Sarah Naish. Be sure to let them know you heard about them from @RasingDevon.

Book Reviews

The Body Keeps the Score

The Body Keeps The Score , Bessell van der Kolk, MD

My Rating: 5/5

Being traumatized means continuing to organize your life as if the trauma were still going on—unchanged and immutable—as every new encounter or event is contaminated by the past.

– Bessell Van Der Kolk, MD.

The Body Keeps The Score reveals the mysteries of brain development – and disruption.

Leading trauma expert Bessel Van Der Kolk, MD expertly guides the average reader through the complex world of neuroscience. The book documents his journey which begins by working with adults suffering from PTSD to recognizing the need for a Developmental Trauma Disorder diagnosis for children who have been chronically abused and neglected.

This book will provide an interesting and enlightening background on the science of trauma. It’s not a how-to, although Dr. Kolk does offer some insight into treatments he’s found useful including yoga. While Dr. Kolk is a highly technical, leading expert he’s repackaged this information in a way that can be easily understood by lay parents.

If you need help with the paradigm shift from traditional parenting to therapeutic parenting, this book may help.

It’s a long book but it’s well worth your time. I fit it into my busy mom schedule by listening on Audible!

My Bottom Line
The Body Keeps The Score is a thought provoking, comprehensive exploration of how our children’s behaviors may be linked to brain development that was disrupted due to trauma. It’s an important read for adoptive and foster parents who want to understand how trauma has affected their kids and catch the vision for therapeutic parenting.

Resources

Resources shared at the 2019 REFRESH conference!
DTD and RAD Guide for TeachersDownload
How parents get PTSDDownload
Self-care guideDownload
What to do when CPS knocks on the doorDownload
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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.

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What to consider before you adopt…

Two-year-old Kayla was shy with dimples that winked when she laughed. Her brother, three-year-old Devon, had curly brown hair, freckles and a quick smile. We’d long dreamed of adopting foster kids and my husband and I jumped in heart-first.

During the mandatory three-month pre-adoption waiting period, Devon and Kayla had some concerning behaviors – issues with food, problems potty training and impulse control – but foster parenting training had prepared me. I knew these were completely normal issues, nothing that couldn’t be healed with the love of a forever family.

What I didn’t know was that Devon and Kayla had experienced early childhood trauma. I discovered that they had learning disabilities, cognitive issues, attachment struggles and behavioral problems over the years. I was woefully unprepared to parent these two beautiful, hurting children.

I did the best I could raising Devon and Kayla but I have regrets in retrospect. Knowing what I do today, I would still have jumped into the adoption heart-first, but I wish I’d also had more information, been better prepared and gone in with the right mindset.

The impacts of early childhood trauma

In the United States there are over 100,000 children waiting to be adopted out of foster care (1). There are thousands more living in orphanages around the globe. Unfortunately, many of these children have histories of neglect, physical abuse, sexual abuse, emotional abuse, abandonment and more. When these experiences occur during critical time periods of development, the child’s brain development can be disrupted.

The impact of early trauma is broad and varies in severity. Renowned psychiatrist Dr. Bessel van der Kolk coined the term development trauma disorder (DTD) to describe its effects on some children. Children with DTD typically struggle to form meaningful and authentic relationships, regulate their emotions and control their impulses and aggression. Many of them have sleep issues, poor executive functioning, learning disabilities and low self-esteem. While certainly not all adopted and foster children suffer from DTD, many do.

There are no quick and easy fixes for the effects of early trauma, unfortunately. A healthy, positive attachment to a stable and consistent caregiver, however, is key to positive outcomes for these kids. Adoption is an important piece of the puzzle for many children to heal from early childhood trauma.

Here are some important ways families can prepare for adoption:

1. Learn everything you can about the impacts of early childhood trauma. Despite what people sometimes assume or want to believe, children do not simply outgrow serious impacts of trauma. “Good parenting” also does not heal the disorder. You need to educate yourself beforehand to know what to look for and who to call upon if you need assistance. One resources to get started is The Body Keeps the Score: Brain, Mind, and Body in the Healing of Trauma by Bessel van der Kolk, M.D. and this set of blog posts all about trauma and the potential diagnostic outcomes.

2. Be realistic in your expectations. Traumatized children need stable love to heal but love alone cannot repair the damage of early childhood trauma and mental disorders. Many children with DTD will need life-long care and intensive mental health and educational services.

3. Consider your ability to manage difficult behaviors and challenging special needs. Every family has differing levels of resilience and abilities to take on challenges. Be realistic when considering your bandwidth. Children with DTD can actively thwart your affection and have serious behavioral problems. It’s possible your adopted child may need a stay-at-home parent. Is this something you are financially able to manage? Also consider the time requirements for tutoring, counseling, occupational therapy, and medical and psychiatric appointments.

4. Think carefully about other children in your home. Having a sibling with special needs can be both a positive and negative experience. It will undoubtedly result in your resources being stretched and shared. If your child has a history of aggression or violence, it’s best if they are the youngest child in the family. It’s almost always beneficial for children to have their own bedrooms. Siblings will need access to respite activities – camps, time away with grandparents and friends and one-on-one time with you.

5. Work closely with your adoption agency. Request a copy of all available records for the child and read them thoroughly. Insist on a full psychiatric evaluation by a mental health clinician so you can understand the challenges your child faces. If you’re adopting out of foster care, ask that your child remain qualified for Medicaid regardless of your income. Negotiate a subsidy and understand the appeal process should your financial obligations change.

6. Build a strong support system now. Lack of support is one of the greatest issues adoptive families face. Don’t assume family and friends understand the challenges of adoption and early childhood trauma. Even adoptive parents typically don’t understand the realities of raising a child with DTD until they have the experience. Provide friends, family, neighbors and educators with resources and ask them to partner with you before the child enters your home, if possible. Consider who you will be able to call on to pick up a child from school, help with dinner in a pinch and to listen without judgement when you just need a supportive ear. Reach out and join local and online support groups.

Children who have experienced early childhood trauma desperately need to be welcomed into families as part of their healing process. Click To Tweet

Children who have experienced early childhood trauma desperately need to be welcomed into families as part of their healing process. Unfortunately, too many adoptive families go in with unrealistic expectations and are unprepared for the challenges they will face. If you decide to adopt, be sure to consider the trauma history of the child and prepare yourself and your family for the challenges ahead.

Before you adoptDownload

1 – https://www.adoptuskids.org/meet-the-children/children-in-foster-care/about-the-children

Originally published by IACD

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.”

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Get Toni’s book here.

Taking it to the courts

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

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

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

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

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

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

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

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

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

A law that didn’t fix the problem

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

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

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

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

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

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

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

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

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

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

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

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

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

What it will take to prevent lockouts

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

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

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

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

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

The difference treatment and family can make

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

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

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

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

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

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

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

Moms matter too, Most Popular

How parents of kids with RAD get PTSD

“It’s unreasonable to force a parent to bond with a child whose behaviors have led to his or her PTSD,” said Institute for Attachment and Child Development Executive Director Forrest Lien. “The whole family needs healing in order to foster parent-child attachments.”

See also:

How Raising A Traumatized Child can be Traumatizing from RADAdvocates

When RAD Siblings Develop PTSD from RADAdvocates

Moms matter too

You can get PTSD from dealing with a young child?

After my son was placed in a psychiatric residential treatment facility (PRTF) I went to therapy. Something was wrong with me and I needed to fix myself before my son returned home. He was 10 and had been terrorizing our family with his violent and out of control behaviors for several years.

I was diagnosed with PTSD, but I brushed it off. How could dealing with a young child cause PTSD? Looking back I now believe I had in fact developed PTSD and it took years for me to heal.

Here are a few symptoms I experienced: hyper-vigilance, social isolation, agitation, paralyzing fear/dread, and heightened reactions

via [INFOGRAPHIC] How parents of kids with reactive attachment disorder get post-traumatic stress disorder – Institute For Attachment and Child Development