WHEN A CHILD’S BEHAVIOR IS OUT OF CONTROL
by Susan H. Shane, Ph.D.
After a full hour of screaming, two and a half year old Megan’s dark, curly hair hung limp and damp, her face was red and tear-streaked, and her voice hoarse. Most two year olds throw impressive tantrums, but not like Megan’s. “She’d scream ‘til she wore herself out, get her energy back and start again”, remembers her mom, Lynn. These mega-tantrums occurred most days, and Lynn was at her wit’s end. There was also a niggling worry. This doesn’t seem normal. What is wrong with my baby?
Megan’s tenacity was a surprising advantage when it came to potty training. One night at bedtime, just after Megan turned three, she bucked, kicked and cried, as Lynn tried to diaper her. Giving up, Lynn put Megan to bed without a diaper and was stunned to find her dry the next morning. From that moment on, Megan never had an accident. “She is so strong-willed she will fight to the death for what she wants,” Lynn marvels.
Also at three Megan amplified her fits by biting, spitting and pulling her mom’s hair. Lynn, recently divorced and raising Megan and her two older boys alone, as well as working and going to school, resorted to a psychiatrist. He diagnosed the toddler with bipolar disorder and put Megan on an anti-psychotic medication. Megan, who had been adopted at birth by Lynn and her former husband, was extraordinarily young for such a diagnosis, even considering the fact that Megan’s biological father had bipolar. Lynn felt the medication helped, but Megan’s behavior intensified again. Holes in the drywall testified to that. In kindergarten, banished to an empty, quiet room, Megan defiantly stripped naked and peed on the floor.
A decade and countless interventions later, Megan’s behavior remains challenging.
Megan is representative of a set of struggling children, many of whom are adopted or experienced early childhood trauma. Megan and her young peers are called the “soft kids” in therapeutic lingo. The “hard kids” are the ones who have tried alcohol or other drugs, experimented sexually, or gotten into trouble with the law. While the soft kids may not have crossed those lines, they are clearly at risk, if drastic steps aren’t taken.
Parents of these children try everything they can afford. Lynn certainly did: parenting books and classes, family and individual therapists and psychiatrists, overnight respite care, medications. Lynn pleaded with each new professional, “Just tell me what to do, and I’ll do it.” While some drugs or approaches helped for two or three months, Megan’s behavior always escalated again. At eight Megan said to Lynn, “I’m going to get a gun and shoot you in the forehead. I’m going to set the house on fire.” Sliding rapidly into depression at the same age, Megan wailed, “I don’t want to live any more. I want to kill myself.”
Troubled children affect the entire family. Megan’s brothers missed out on a lot of attention. “If it wasn’t about Megan, she was going to make it about her,” Lynn said. Megan reliably disrupted the boys’ sports events. At one game, a furious five year old Megan picked up a folding chair and flung it hard at Lynn who sobbed alone on the sideline, as the crowd in the stands stared silently.
In fourth grade, becoming aware of negative judgments by her peers, Megan began to contain her behaviors in school and save her explosive worst for home, prompting Lynn to lock all the kitchen knives in her car’s trunk. At nine, Megan spent a full month in the pediatric psychiatric unit of the local hospital. When Lynn visited her in the hospital, Megan kicked and cussed at her. Megan was hospitalized five times over the years, usually because it was the only way Lynn and the man she married when Megan was 12 could keep their entire family, including Megan, safe. “Hospitals just put a bandaid on the situation,” Lynn acknowledges.
At 13, Megan often stayed up most of the night, showering and straightening her hair with a flat iron, even though this was against the family’s rules. One day, while Megan was at school, Lynn took the flat iron and locked it in a safe. That night Megan confronted her mom and stepfather, as they sat watching TV in the living room. “Give me back my flat iron,” Megan demanded in what Lynn describes as “the most evil voice you’ve ever heard.” Lynn said no, explaining why it was taken. Over and over, Megan grimly repeated, “Give me my flat iron.” Then, “If you don’t give it back to me, I’m going to get a knife.” Her parents chose to ignore her threat, and Megan left the room. Upon returning, she stood in front of them, her hands hidden behind her back. “What do you have behind your back?” Lynn asked. Megan told her it was a knife, and Lynn said, “Megan, that is not a good decision. Put the knife away or I’ll have to call the police.” As Lynn moved toward the phone to dial 911, Megan sprang after her. Megan’s stepfather grabbed her; she dropped the knife and bit him hard, causing an open, bleeding wound. The flat iron incident was the final straw; Lynn realized she could no longer keep Megan at home.
For families like Lynn’s who are ineligible for government assistance with placement for their kid, the standard recommendation is to hire an educational consultant, and Lynn found one through a local school. Most parents who reach the point of contacting an ed consultant are “in survival mode” says Mark Sklarow, Executive Director of the Independent Educational Consultants Association (IECA). They usually lack the time, energy or know how to research therapeutic placements, so they are at the mercy of consultants who range from ethical, fair and well-informed to disreputable rip-off artists.
Many children arrive at residential programs dragging a hefty list of diagnoses behind them. Along with bipolar disorder, Megan acquired oppositional defiant disorder, depression, reactive attachment disorder, and ADHD over the years. When parents are first given a diagnosis for their child, many cling to it as if to a tree in a tsunami, believing it will lead to a remedy. Along with the diagnoses come medications, often a handful of drugs taken simultaneously. Deciphering the effects of the meds versus the child’s organic behavior becomes more challenging with each additional drug. Many of the meds have damaging side effects. Due to her meds, Megan’s hormone levels skyrocketed and her periods vanished.
As the string of diagnoses for a child lengthens, parents’ faith falters. A former director of the National Institute of Mental Health (NIMH), Dr. Steven Hyman, says that mental disorders are not really categories but “spectra with fuzzy boundaries”. The lists of supposedly discrete illnesses that children accumulate are simply an artifact of classification methods, not actual, separate diseases.
Lynn had three main forms of residential care to choose from: therapeutic wilderness programs lasting six to 12 weeks and costing $20-30,000; therapeutic boarding schools costing $8-12,000 per month; and residential treatment centers, which take violent children, costing the most. The latter two types last 18 months on average.
Payments for residential programs can add up to hundreds of thousands of dollars over a year or two, allowing only the most well-off to get this help. Some families take out second mortgages to pay the extraordinary fees. A school system may pay, but only after parents have sued. Health insurance will sometimes cover part of the bill. Travel to and from the school or program adds to the expense. Occasionally, scholarships or discounts are available.
Given the costs of residential treatment, one would hope that its effectiveness is proven. In fact, as Sigrid James of Loma Linda University writes in a 2011 paper in Children and Youth Services Review, such outcome data are “scant” and are “mostly based on studies with small, non-representative samples, and weak study designs, lacking control groups and standardized measures”. According to Mike Gass, a researcher at the University of New Hampshire, 70-90% of kids in wilderness therapy do not go home afterwards but move on to other placements. Many children continue to struggle despite being sent to more than one long-term residential program. Many parents see their kids reach their mid-20’s before they are finally functioning fairly normally, aligning with neuroscientists’ discovery that human brains don’t fully mature until about 25.
As Lynn expected, the ed consultant recommended that Megan take the next typical step on the treatment trail: three months in a therapeutic wilderness program in Utah. Lynn believes that wilderness is “where the most change took place,” although not enough for Megan to live safely at home. Lynn and most other parents who’ve placed a child in residential treatment report a combination of deep grief and powerful relief. While the family’s future remains uncertain, one mother sums up the clearest conclusion about a good residential program saying, “At least I know that my child is safe.” Megan, now 15, is 20 months into a stint at a therapeutic boarding school, a place where therapy permeates every aspect of life, academic and otherwise. When Lynn visits with Megan in a hotel near the school, they snuggle happily, and Megan lets her mom rub her back...as long as Megan is “not in a bad mood.” Lynn says Megan can come home “when she completes the program,” and, at the moment, that end is nowhere in sight.
Sidebar: Visit http://sciencetoliveby.blogspot.com/ for in-depth information for parents who have reached the end of their rope and need guidance in finding a good placement for their child. For a partial list of residential programs go to http://natsap.org/. To find a credible consultant go to Independent Educational Consultants Association (http://www.iecaonline.com/).
ADDENDUM: Family finances forced Lynn to take Megan out of her therapeutic boarding school before she’d met the graduation requirements. Much to Lynn’s surprise and relief, Megan is living successfully at home and attending a small private school.
The first step in understanding emotions is to learn to label and recognize them. This skill is taught in DBT classes, including ASPIRE at El Camino Hospital. The following word chart was used in a recent interaction between a local parent and her teen.
It helped them talk about what was happening and she sent it our was to share. It shows primary and then secondary more complex emotions in a tiered way.
Our dear Support Group Leader Extraordinaire, Emily Chapman, forwarded me a site about "Humor, Hope and Support" for the Special Needs Community. Kids with Autism, Bi-Polar, ADD, - you get the picture... Our people! :-) You too can stand up or sit down and check out what they are calling the "Movement of Imperfection". Here is a link to their site: http://shutupabout.com (where you can join their newsletter and facebook page). And while we are on the subject of sites Emily likes... She is gets gems from Wind in the Willows, a support group for families considering Residential Treatment.
Oh My.. That leads me to another exciting and fantastic parent, Sara! She (with a little bit of help from Suse and myself) have put together a treasure trove of info on Residential Placement. This is coming to this website very soon! (under "Hospitals, Treatment Centers, Alternative Treatments")
Great stuff! We are building our own movement in Santa Cruz County!!! Go TEAM!!!
Summer is a perfect time to look for work or prepare for school. The Prevention and Early Intervention (PEI) program at Community Connection is seeking clients who are interested in Employment and Education Support. This program is for people over 18 who are experiencing new and significant symptoms of mental illness (including post traumatic stress disorder) and who are not already receiving county services. You do not need to be on Medi-Cal to qualify!
Community Connection’s PEI goal is to support participants in recovering their independence and self-responsibility through community integration. They provide brief services aimed at assisting people in reaching their employment and academic goals and believe that with early and effective intervention, many people succeed in work, school, and life.
· resume writing,
· interviewing skills and techniques,
· web and community based job search,
· skill building, and
· resume building volunteer opportunities.
· support with applications and registration,
· academic counseling and planning,
· receiving accommodations, and
· academic referrals for tutoring and other services.
In order to qualify for Community Connection’s PEI services, the person must be experiencing new and significant symptoms of mental illness (not known to be caused by a medical condition, injury, or substance use) and experiencing worsening difficulties in school and/or difficulty in finding or maintaining employment. Qualified participants must live in Santa Cruz County and be over 18 years of age. If you or someone you know is interested in PEI services please contact Andrea Turnbull (831) 425-8132 ext. 227 or firstname.lastname@example.org
BOOK CLUB! THIS MONDAY!
Our book club will meet every other Monday. Our first book is:
"Building Resilience in Children and Teens", 2nd edition by Kenneth Ginsburg
Let's have the first 2 parts 1-125 read.
> >> Monday, June 10th
> >> > 10:00
> >> > Ocean View Park (at the end of Ocean View Avenue in Santa Cruz)
There is a section at the back that is specifically for teens. My younger son has been having bouts of anxiety/depression and has been getting really emotional, really fast (sound familiar?). I've been trying to explain how stress affects moods - some of the info in the book. It wasn't going over well and then I asked him if he wanted to do that section. He did and he really got it. ("Mom, you don't explain things well.") If your son or daughter is open to it, give it a try!
Rama - one of our board members and the Santa Cruz County Health Agency Director saw my book and commented that it was excellent. A great recommendation!
> >My sister saw Mr. Ginsburg speak at her school and was very impressed. He is from the Positive Psychology school of thought. The jacket of the book indicates that it is geared for kids with all levels of coping. So I'm hoping it isn't just another mainstream parenting book that we all have read and found of limited use. As some of you know, I'm putting together a Positive Psychology class (more on that end of June). Positive Psychology is a strength based approach to mental health. It works on building strength as opposed to treating weakness. Many controlled studies have been done on Resiliency for kids with Mental Health challenges and the techniques for Resiliency out of Penn University have shown to be affective in reducing Anxiety and Depression.
> >Here is the description from Amazon.
> >Families, schools, and communities can prepare children and teens to THRIVE through both good and challenging times. Building Resilience in Children and Teens offers strategies to help kids from 18 months to 18 years build seven crucial "Cs" â€” competence, confidence, connection, character, contribution, coping, and control â€” so they can excel in life and bounce back from challenges. The book describes how to raise authentically successful children who will be happy, hardworking, compassionate, creative, and innovative. Dr. Ginsburg reminds parents that our goal is to think in the present and prepare for the future, to remember that our real goal is to raise children to be successful 35-year-olds. It's about more than immediate smiles or even good grades; it's about raising kids to be emotionally and socially intelligent, to be able to recover from disappointment and forge ahead throughout their lives. The stable connection between caring adults and
> children is the key to the security that allows kids to creatively master challenges and reach their highest potential. This book offers concrete strategies to solidify those vital family connections.
> >Resilience is also about confronting the overwhelming stress kids face today. This invaluable guide offers coping strategies for facing the stresses of academic performance, high achievement standards, media messages, peer pressure, and family tension. Young people too commonly survive stress by indulging in unhealthy behaviors or by giving up completely The suggested solutions offered here are aimed at building a repertoire of positive coping strategies. Kids who have these healthy strategies in place may be less likely to turn to those quick, easy, but dangerous fixes that adults fear. The book includes a guide for teens to create their own customized positive coping strategies.
> >The second edition of this award-winning book continues to focus on parents, but now also offers wisdom about how schools and communities can best support families. It is updated throughout and entirely new chapters offer strategies on how best to: support military families, confront the negative portrayal of teens, prevent perfectionism and support authentic success. Finally, the book now guides parents how to recharge and rebound when their own resilience reaches its limits.
I am looking for resources that teachers can use in classes and came across this great site. They have a youtube channel as well. Their site also has information to support families including a booklet for siblings and a medication tracker, and information on Evidence Based Medicines. Their sections on each condition is well put together. Teen Mental Health
I wanted to share 2 blogs that I recently ran across. Both are awesome in different ways. Enjoy!
My son showed this to me and said this is how I feel. It gives the best description of depression that I have seen. It is also very artistic.
The Coffee Klatch Special Needs Radio
Award winning, world renowned authors, psychiatrists, psychologists, physicians, advocates and respected children's foundations join us to help you better understand a special needs child.... and yourself.
Check out this TED talk on how they may have found a "switch" that can turn off Parkinsons and Depression. Way cool!
Hi friends of the Pediatric Bipolar Disorders Program!
We want to invite you to the PBDP Spring Parents' Night event! For those f you who attended the fall Parents' Night, you are encouraged to also attend this event! We will be presenting new information and discussing upcoming studies.
What: This event is an opportunity to hear presentations and ask questions of Kiki Chang, MD and Meghan Howe, LCSW. At Parents' Night, you will meet fellow parents and share experiences. You will be able to have one-on-one time with renowned faculty in the fields of psychiatry and psychology.
When: May 2, 6-8 PM
Where: Psychiatry Building at 401 Quarry Road, Stanford, CA 94304. There will be signs posted directing you where to go!
We really hope you are able to attend the event! Please feel free to call or email with any questions.
I apologize if any of you are receiving this email for the second time!
Clinical Research Coordinator
Stanford School of Medicine
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