Special Needs Families Hidden Among Us
By Susan H. Shane
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: http://sciencetoliveby.blogspot.com
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