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.
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.
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 (see immediately below). 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/).
First published 18 Jan. 2014 at:
http://www.namisccparents.org/blog.html
