Families Hidden Among Us

By Susan H. Shane

July 2018 • Growing Up In Santa Cruz

There are families in Santa Cruz with special needs kids who do not fit the usual categories. These families are deeply traumatized, but few outside the home know about them and the reality they live. The children, initially, present within the norm at school but have severe emotional and behavioral problems at home. In fact, their behavior poses a genuine danger to the health and safety of the child and family. There are, literally, no resources in town sufficient to help these families.

Jane, already a mother of three girls, knew that her two year old, Natalie’s, long, intense crying fits were very different from those of her other kids. Her instincts were right, as things only escalated from there. By age 7, Natalie was a “Tasmanian devil”, creating “constant turmoil” in the home with her incessant oppositional, angry behavior. Jane reluctantly took Natalie to a psychiatrist who prescribed the child an antipsychotic medication, the first of about 15 drugs Natalie would be given over the next few years.

While Natalie, generally, held herself together at school, she had constant problems with peers and “was black-balled by the parents”. Maintaining her equilibrium at school resulted in Natalie having “huge meltdowns” each day, when Jane picked her up. No one knew the hell the family was living through at home.

When academics became more challenging in sixth grade, Natalie began three years of school refusal, attending school only about 30 days in all that time. Jane and her husband sent Natalie to several different schools during that period in hopes that a change of approach might help.
Natalie refused to start 9th grade and was hitting her parents so often that they called the cops weekly for awhile. three times over six weeks the police took Natalie to the emergency room or hospital behavioral health program. From there, Natalie was briefly place in pediatric psychiatric hospitals outside Santa Cruz County (there are none here).

Jane’s family was struggling economically, as this was during the Great Recession. Jane had had to quit her job three years earlier to care for Natalie who was always home, and Jane’s husband was “barely working”. Utterly desperate, Jane sought out a pro-bono attorney who spent nine months suing her school district in order to get them to pay for the family’s last hope: therapeutic residential treatment for Natalie.

The business of therapeutic residential treatment is a massive industry composed of at least 187 programs which are members of the National Association of Therapeutic Schools

and Programs (NATSAP) and, possibly, as many more which are not. Monthly costs for the various types of programs range from $8000 to $12,000/month or more according to families who have used them.

Jane is a member of a group of 11 mothers formed, with support from NAMI (National Alliance on Mental Illness), in 2014. Some moms had already sent their young children to treatment programs in other states, while others were living with trauma and dreading that might be the route they would have to take. Although each child’s story is unique, there are familiar elements in most: very young emotional volatility, relationship problems with peers, intelligence and ability to cope with elementary school, depression, anxiety, anger often leading to violence, oppositionality, and, in their teens, cutting, suicide threats and attempts, and eating disorders. All of the parents, driven by intense love for their kids, tried everything possible at home: psychologists, therapists, occupational therapy, psychiatrists, medications galore, parenting programs, hiring in-home aides, consulting specialists across the country, researching on the Internet for hundreds of hours, and more. Each mom acknowledges that the decision to send their child to live away from home was the most heart-breaking decision of their lives, yet, as responsible parents, it was the only option that would keep everyone safe.

One of the most striking facts about this group of 11 is that six of the children are adopted. The parents report that, in the treatment programs their kids attended, 50 to 75% of the kids also were adopted. Clearly, this is a dark side of adoption that needs to be faced.

While three moms see high-functioning autism with anxiety and depression as the most salient diagnoses for their kids, most other moms became disillusioned with the current concept of diagnosis. These kids range such a wide gamut as to be impossible to pigeon-hole with any particular diagnosis. Even the former head of the National Institutes for Mental Health (NIMH), Dr. Steven Hyman, says that mental disorders are not really categories but “spectra with fuzzy boundaries”.

While unbearable trauma goes on inside these families’ homes, you couldn’t identify these children out in the world. Most come across as typical or slightly quirky at most. Many of them also have gifts out of the ordinary, gifts that have let them shine in the world on occasion. One boy played competitive soccer for years and won awards for his art at the Santa Cruz County Fair. A girl’s poem, written in third grade, won best elementary school poem at the Fair. That same young woman, expelled from high school in mid-11th grade, completed her high school diploma through Santa Cruz Adult School in just six weeks. Natalie, home for a summer between therapeutic placements, created her own online business and made thousands of dollars! She went to flea markets and thrift stores, bought damaged American Girl dolls, repaired them and sold them online for $85 apiece. Secure and thriving in a residential treatment program with a 2:1 kid:staff ratio, Natalie completed four years of high school in just two years. Each mom in the group sees her child’s exquisite gifts and fervently hopes that those will prevail one day.

With enormous gratitude to Jane, a powerful, tireless, loving mom who bravely shared her story with me. Names are pseudonyms, because the stigma on these children and parents is pervasive.  The author has a blog:  sciencetoliveby.blogspot.com

for more information:
NAMI Help Line
831-427-8020
NAMI support for Family members of Youth and Young adults (16-26) 1st and 3rd Thursday at 6:30 - 8:00 pm NAMI SCC Office: 542 Ocean Street, Suite F (upstairs), Santa Cruz.  Parking in back or on street.
Contact Emily at ebc73@comcast.net or (831) 476-1020

July 2018 • Growing Up In Santa Cruz 25

Where Have All the Bats Gone?

During the late 1960’s and throughout the 1970’s, my Mom and I would float offshore of a beaver lodge at dusk, watching the tree-eaters work and slap their tails.  As we drifted in our canoe, the air was filled with dozens of bats gobbling up mosquitoes and other insects.  The bats were so abundant that it wasn’t unusual for one’s wings to brush my hair as it chased its prey around my head.  It has been a couple of decades since I saw bats in those numbers on Temagami, and I’ve wondered what became of them.

Most people have heard of white nose syndrome (WNS) which has been killing bats in Canada since 2010 and in the U.S. since 2006.  WNS is caused by a fungus which grows on bats’ noses, ears and wings while they are hibernating in groups during winter in caves, mines and wells (called hibernacula). The fungus can remain viable for years in bat caves and on spelunkers’ gear.  WNS kills bats by a complicated set of effects causing them to wake during winter and starve.  WNS is carried from bat to bat and by humans moving from contaminated hibernacula to clean ones.  WNS has been called “the most devastating epizootic [epidemic] wildlife disease of mammals in history” by scientists.

Four Ontario bat species were listed as endangered in 2014 due to WNS: little brown myotis, northern myotis, eastern small-footed myotis (Myotis is the genus name of these three species), and the tri-colored bat.  Although no one knows how many total bats of each species lived in Ontario before and after the advent of WNS, counts from hibernacula where counts were done show that populations have declined 75-94%, depending on the species.  Other threats to bats include human destruction of hibernacula, of summer maternity roosts (females have one young/year and roost in groups during spring and summer), of feeding areas, direct killing by humans, and by wind turbines.  All of these threats are now more significant, because so few bats have survived WNS.

Bats provide a vital service in the form of pest control.  The value of their services is estimated to be $100 million to $1.6 billion in Ontario alone.  Also, increased numbers of mosquitoes contribute to increased mosquito-borne diseases.  

Is there any hope for bats?  WNS is moving westward and northward in North America, and preventing its spread offers the greatest hope of protecting unaffected bats.  A very small proportion of the Ontario bats already hit by WNS seem to be genetically protected from contracting the disease.  The Environmental Commissioner of Ontario (ECO) published a report entitled BIODIVERSITY UNDER PRESSURE: WILDLIFE DECLINES IN ONTARIO (2016) in which the Ministry of Natural Resources and Forestry (MNFR) is chastised for being too slow to define recovery strategies that might actually help save bats in the province.  Further, the ECO is pushing the MNRF to begin “broadscale biodiversity monitoring”, because “what gets measured gets managed”.

https://tla-temagami.org/tla-business/services/the-temagami-times/

Moose at Risk

A typical Temagami t-shirt has either a bear or moose on it.  Alarmingly, moose populations are declining throughout North America, and Ontario is no exception.   When the number of moose in Ontario declined to about 80,000 in the 1980’s hunting was restricted, and moose abundance rose to about 115,000 by the early 2000’s.  As of 2015, there were about 92,300 moose in the province, a 20% drop.  Near Cochrane and Thunder Bay, moose numbers declined 60% and 50%, respectively, over the last decade.

While there are likely multiple causes for the decline in moose populations, a central issue seems to be climate change.  Moose are highly cold-adapted, and a warming climate brings heat stress and increased parasites that can kill moose.  An example is found in New Hampshire where 41% of moose deaths in 2002-2005 were attributable to parasites, particularly ticks, which thrive under warmer conditions.  Moose do best in a mosaic of variable habitats.  First Nation elders have said that the longer a forest goes without burning, the fewer moose there will be there, so fire suppression could be a factor contributing to lower moose numbers.  

The main action MNRF is taking to boost moose numbers at this time is to limit hunting.  Thanks to a huge public outcry, MNRF discarded a potential plan to increase hunting of wolves and coyotes in Ontario.  Decades of research have shown that reducing top predators causes massive ecological disruption and does not reliably increase prey populations over time.  The 2016 ECO report (see bat story) criticizes MNRF for its short-sighted, uninformed approach to moose management.

https://tla-temagami.org/tla-business/services/the-temagami-times/

THE NIGHT THE COUGARS CAME

By Susan H. Shane

Tugged from a sound sleep at midnight, my groggy mind tries to make sense of a deep, huffing 
breath I don’t recognize.  I listen intently, puzzling.  When I hear the sound of scrabbling feet, I tell myself that my dog, Misty, lying at the foot of the bed beneath the open window, is having a 
running dream.  Half-satisfied, I slip back into sleep.

Upon rising, I go through my morning routine, one established 
during 30 years of living on an acre of land next to a state park 
in the Santa Cruz Mountains.  I  greet my kitty with warm words, 
a head scrub and breakfast, feed Misty and the chickens.  En 
route to the goats’ pen, I snag a piece of ice plant, a treat they 
relish.  I walk past the upper part of their pen and toss it in.  I am 
jolted out of auto-pilot by the absence of Kiko and Butterscotch’s 
“maa”s and hoof thuds.  I stare into the pen.   A goat lies 
motionless  on the ground.  My heart clutches.  I stand on tiptoe searching for my other goat.  I 
see her body lying still in a corner. Falling to my knees, I scream over and over:  “No, no, no!  
My babies...”

Sobbing and shaking, I enter the goat pen for a closer look.  There is only one explanation for 
their deaths-- a mountain lion attack.  Each goat lies on her side.  No blood shows on their necks 
where the cougar’s fangs had taken hold.  I see only subtle indentations and a vague parting 
of the fur.  On each goat’s side, however, is what looks like the work of  a satanic cult.  A 
large oval of skin and fur is clipped away, leaving a bright red membrane tightly stretched over 
the innards.  Neither goat’s body cavity is ruptured.   The mother in me grieves in horror, while 
the scientist observes and takes photos.

Fourteen years earlier, my two daughters and I had adopted Butterscotch (nicknamed “Butter”) 

and Kiko as tiny, angelic creatures who easily fit side by side in a large dog crate. Sisters, they 
were a melange of meat-goat breeds whom we never intended to eat.   Engaged and interactive 
with us from the start, they would greet my morning nose blow with eager “maa”s.  When they 
were full grown, about 175 pounds each, my youngest daughter played cowgirl with them.  

She hopped aboard a broad back and slipped and bounced as the goat 
trotted out from under her.  Occasionally, I let my goaties roam free in the 
yard to feed.  My illusions of having them gobble weeds were quickly 
discarded, as they always headed straight for my most prized plantings.  

Getting them back into their pen was always a chaotic, hilarious scene.  
Butter was the more adept at evading capture.  Chasing her, I would 
reach out to fling a rope around her neck just as she’d pivot and gallop 
away.  At times, my dog, children and I would form a ragtag team running 
erratically through the yard, sweaty and breathless with laughter, as Butter bolted and spun just beyond our reach.

Goat walks in the state park next to our home were the highlight of life with our goaties.  The forest was a smorgasbord of flavors for them to nibble.  
In the woods, however, their rambunctious boldness disappeared, and 
they stayed nearly glued to me; they were prey animals, after all.  Wide-
bodied Kiko constantly halted to browse, filling the narrow path.  I’d shove 
her massive bulk and dash ahead, trying to give myself space to hike.  
Seconds later, one or both goats powered past me, knocking me aside.  
If I ever succeeded in getting far enough ahead to be out of sight, 
thundering hooves pursued me, and the goats crowded against me again.

As part of the family, Butterscotch and Kiko needed protection in case of a wildfire, an ever-present risk in rural, mountainous California.  In June 2009 a fire did threaten 
our neighborhood, and an evacuation was ordered.  I boxed my five hens in a large plastic 
container, my two cats in carriers, and deposited my dog and my daughter in the front seat of 
my minivan.  Then, as I had planned for years, I loaded Butterscotch and Kiko into the seatless 
back of the van. Apart from depositing poop pellets on the carpet, the goats behaved well.  As I 
drove, they nibbled on my hair.

An hour after my grisly discovery of my goats’ bodies, I called The University of California at 
SantaCruz (UCSC), ten minutes from my home. The university’s Puma Project had run a study 
of mountain lions in our area for years.  Sean, a field tech, came to survey the scene.  Although 
there were no discernible prints in the goat pen, I finally found a youngster’s paw print on the trail 
leading into the state park.  We found scratch marks at the base of the fence where Butter’s body 
lay.  Unable to lift her body, the lion had tried to drag her out beneath the fence.  Sean suspected 
that the attacker was 29F, a satellite-collared adult female lion who had an older cub.  29F’s 
satellite tag battery was nearly kaput, so researchers were anxious to capture and re-collar her.  
My goats’ deaths provided the opportunity to do that, so Sean left to gather equipment needed 
for the capture.

The Puma Project’s research had revealed that goats are a favored prey of mountain lions.  Why 
had my goats survived for 14.5 years in prime mountain lion habitat?  I had always assumed 
their size would make it impossible for a mountain lion to haul the body over the six foot fence 
surrounding their pen.  Signs that Butter’s body had been dragged to the fence and an attempt 
made to pull her beneath it confirmed that theory.

As I waited for Sean to return, a kind neighbor, poignantly suffering from terminal cancer, used 
his backhoe to dig a massive grave for my girls.  Wishing to connect, suffer, do penance, I 
spent a few hours saying goodbye and shoveling earth over my goaties.

After dark, Sean returned and placed a large, heavy-barred steel cage in the pen where Butter-
scotch’s body had lain.  He baited it with dripping pieces of purplish red beef liver from Safeway, 
then left the trap, and stationed himself in my house to wait for a radio alert that the trapdoor had 
been triggered.  At midnight, Sean woke me with news of success.  He and I stood on the deck 
and scanned the scene with a powerful flashlight.  Occasional clanks echoed from the trap 
where 29F was caught, but our attention was diverted to the garden where eyes glowed.  
“There’s the cub,” Sean pointed out.  We gazed in silence, and then Sean exclaimed “Wait, 
there are four eyes in that bush!”  Four glowing eyes peered out from the inadequate cover of a 
dwarf lemon tree, beneath which crouched not one, but two cubs!  Each kitten was nearly full-
sized but not as heavy as its mom.  This discovery provided a potential explanation for my 
goats’ deaths.  Perhaps this mother puma had taken advantage of a chance to teach her cubs 
hunting skills in a controlled environment?   We heard one pure, sweet, loud chirp of a whistle, 
the mother’s call to her cubs.  After some time, perhaps convinced that we posed no threat, 
the kittens crept out from their flimsy cover and began to explore.  Always together, these lanky 
blond creatures strode in and out of my garden, meandering and sniffing.  It was a wonder to 
watch, a “rare event”, Sean told me.

An hour later, reinforcements from the Puma Project arrived.  We proceeded down to the goat 
penwhere 29F crouched, watchful inside the cage.  Two of us stepped close to one side of the 
cage, and the  cougar became a terrifying demon--  lips retracted, ears pinned to her head, 
massive canines revealed, and deafening snarls directed at us.  From the other side of the 
cage, Sean injected the distracted lion with an anesthetic via a needle on a long pole.  The 
cubs had already melted into the chaparral, never to be seen again.  Once the puma stilled and 
slumped to the floor of the cage, two people shifted her onto a canvas sling and carried her into 
the open yard at the edge of the woods. 

While the researchers were busy with measuring, weighing 
and photographing 29F, I sat on the ground and touched the 
animal that had killed my beloved goats. “I hope you’re 
suffering”, I told the cougar in my mind.  And, then, I marveled 
at her perfection, mesmerized by the unblemished, grey pads 
of her paws and the thick, furred beauty of her heavy, golden 
tail.  My mind was a scramble of sadness, anger and awe.  
As I sat there, I became aware of the mountain lion’s breathing.  
With a chill, I realized it was this deep huffing that I had heard 

from my bed just 24 hours before.  The scrabbling feet I 
attributed to my dog’s running dream?  The final sparks of my 
Kiko’s life, her hooves scraping desperately at the earth as the breath left her.

2 January 2018

THE ENERGY EAST PIPELINE PROJECT

by Susan H. Shane

If you drove between Temagami and North Bay last summer, perhaps you noticed the huge billboard declaring opposition to Energy East.  I did, and I wondered “What is Energy East”?  

The Energy East Pipeline Project is a proposal by TransCanada Corp.  TransCanada is best known for its Keystone XL Pipeline Project.  In 2015 President Barack Obama and the U.S. State Dept. decided to oppose approval of this pipeline which would have carried Canadian crude oil across the U.S. to the Gulf of Mexico.  

The Energy East project involves a 4500 km-long pipeline running from Alberta to New Brunswick.  It turns out that most of this pipeline already exists and is now carrying natural gas from Saskatchewan to Cornwall, Ontario.  The new Energy East plan involves converting this pipeline to carrying crude oil from tar sands deposits, building additional pipeline in six provinces, and building numerous oil-related facilities.  The pipeline would carry 1.1 million barrels of crude oil per day across Canada.  This pipeline already lies within meters of Lake Temagami (see map in link below).

The most controversial aspect of Energy East is that the pipeline that cruises along the edge of our lake would be carrying, not relatively environmentally-gentle natural gas, but much more environmentally-destructive Alberta bitumen-based oil.  The oil industry calls the source of bitumen “oil sands”, while the environmental community calls it “tar sands”.  According to National Geographic (2009) mining bitumen requires stripping 100 feet of soil off the land and using tons of water and chemicals to pull the 10-15% bitumen out of  the sand and convert it to a synthetic crude oil.  Not only is the extraction and production of oil from bitumen disastrous for the environment, the oil produced is uniquely hard on pipelines.  A 2013 Scientific American story (“Does Tar Sand Oil Increase the Risk of Pipeline Spills?”) reports that the higher temperature and higher pressure required to send this type of oil through pipelines increases corrosion and rupture and, in the upper midwest of the U.S., resulted in a 3.6 times greater likelihood of a spill than the average pipeline spill risk.

TransCanada filed its application for Energy East with the National Energy Board of Canada in October 2014.  Environmental groups, communities and indigenous groups have commented and caused numerous changes to the pipeline plan.  One of the biggest events in the review process occurred in Sept. 2016 when the three-person panel assigned to review the project stepped down because of suspected bias.  New panel members are being sought, and the review process remains on track to come to a final decision about the pipeline in March 2018.

Locally, neither the Temagami First Nation (TFN) nor the Temagami Lakes Association (TLA) have taken official positions on Energy East.  Chief Paul stated that the TFN has “identified several concerns” about the project.  In June 2015 the Temagami Town Council passed a resolution conditionally supporting  Energy East, providing that water sources are reasonably protected.   Mayor Lorie Hunter says that the Council favors the pipeline because of potential jobs and tax revenues.  The North Bay MP (Minister of Parliament) opposes Energy East passing through the Trout Lake watershed.

article published in the Temagami Times, Winter 2017 (click on link below and then select Temagami Times -- Winter 2017)

https://tla-temagami.org/tla-business/services/the-temagami-times/

When All Else Fails: 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.   

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

HOW TO FIND A RESIDENTIAL PLACEMENT FOR YOUR YOUNG CHILD:

 DECIPHERING THE WORLD OF RESIDENTIAL THERAPEUTIC PROGRAMS FOR CHILDREN AND YOUNG TEENS  

Susan H. Shane 

For families with pre-teen to early teenage children who have severe emotional, behavioral and social difficulties and who have tried all types of therapeutic approaches without success over many years, this guide is for you.  You are the parents who have reached the end of your rope and have decided that your child must live away from home to get the help she or he needs.  It is important to realize that appropriate programs for your child will be the minority which are tailored to younger kids who have never had substance abuse issues.  

The standard recommendation to you will be to hire an educational consultant to help you find an appropriate program for your child.  The first caveat is to do a little homework before hiring an ed consultant.  Consultant fees range in the thousands of dollars and cover reviewing the child’s history (for the umpteenth time), interviewing parents and child, sometimes referring the child for additional assessments (at additional cost), and facilitating the child’s placement in a residential program the parents choose from a full range offered by the consultant. 

 
Choosing a consultant can be daunting. There are 4-5000 full-time educational consultants of all types in the U.S. plus another 10-15,000 who dabble in the field.  Most ed consultants work in the field of college placement, but about 20% handle therapeutic placements.  Only 150 of the 1000 or more therapeutic ed consultants are registered as professional members of the Independent Educational Consultants Association (IECA) (http://www.iecaonline.com/), the sole national organization that sets rigorous standards for them.  These 150 ed consultants are the most thoroughly vetted professionals in the industry, making them a good starting point for interviewing to find a good match for your family.  There is also a certifying organization, the American Institute of Certified Educational Planners (AICEP), with about 100 CEPs who specialize in therapeutic placements; some are also IECA members.

A rare parent may travel the road to finding a therapeutic placement on her/his own, using the Internet and personal recommendations from families who’ve been through the process.  Reliable resources are limited, but one can begin by looking at the list of 153 programs belonging to the National Association of Therapeutic Schools and Programs (NATSAP).  Importantly, there are just as many schools and programs that do not belong to NATSAP, so, while their list is not comprehensive, it is a good starting place. Family Light (www.familylight.com) is an informative, although not very up-to-date, resource which lists and evaluates many programs. Notably, this is the only site that offers reviews by an educational consultant that are free to the general public.  Another place to look is at www.strugglingteens.com.  

There are three main options for out-of-home therapeutic care: wilderness programs, therapeutic boarding schools and residential treatment centers.  Residential treatment centers (RTCs) are purported to provide the most therapy; also, they are the only institutions (aside from psychiatric hospitals) willing to take violent children.  In their bag of tricks is the capacity to physically restrain children which can, sometimes, look like a staff person sitting on top of an out-of-control child on the floor.  RTCs are the most expensive option, costing at least $10,000/month.  Kids stay an average of 18 months in an RTC, just as they do at a therapeutic boarding school (TBS), the next level down.   Therapeutic boarding schools can be slightly less expensive, and they exclude violent kids.  TBSs usually offer stronger academics than RTCs. It is important for parents to distinguish whether their child is violent only with them (possibly a boarding school candidate) versus being violent with outsiders (likely to be an RTC candidate).  A third residential option, usually a first step before an RTC or TBS, is a therapeutic wilderness program which can cost from $20-30,000 for six to twelve weeks. 

Once parents have narrowed the list of schools and programs down either on their own or via an ed consultant, a personal visit, or at least a Skype session, is crucial.  Meeting the staff, especially the therapist who will treat their child, and observing and talking with children in the program is the only certain way for a parent to know if the place is a good fit for her child and her family.  Responsible programs will always require a significant commitment on the part of parents to learn, self-reflect, and change along with their child throughout the child’s residence in the program. Parents should ask to speak with families whose kids currently attend or have graduated from those places.  Obviously, programs will likely only use satisfied customers as references. Parents should try to identify dissatisfied customers by reaching out to parent support groups or asking parents referred by the programs for any unhappy parents they may know.
 

See above for personal story of one family: When All Else Fails