Month: September 2009

Welcome…

On behalf of the Schofield family, allow me to welcome you to JanisJourney.org.  Here you will find the personal, deeply moving story of a family struggling to care for their daughter in the face of impossible odds.

This page features the writings of Michael Schofield, his journeys into Jani’s world and his attempt to rationalize and deal with his daughter’s illness.  Writings prior to the opening of this website can be found at this link.  Comments for the current blog may be left on any blog page by using the comment button at the end of the blog.

Thank you for your time and for your support.

Ron Chatman
Website Administrator

Resources

Resources

Of all the things we have learned along the way, the greatest comfort comes in the fact that there is strength in numbers.  As we started this journey, there were few other souls that we met who could understand what we were going though.  But slowly we discovered other families who are dealing with many of the same issues.

In an effort to share as much information as possible, we have established this Resources page to help others in their journey.  Think of it as a trail of digital pebbles, allowing others for follow our footsetps or blaze a new trail, boldly marked so that others may follow.

Eventually, we will connect the blogs in a “webring” of connected sites, each offering a different voice and viewpoint of this complicated issue.

 


Facebook Support Pages:

The Jani Foundation:

The Jani FoundationPromote your Page too

 

The Jani Foundation’s mission is to provide aid to families with children suffering from mental illness by using various media including TV, blogs, and social networking to pressure state and county mental health organizations, contracted agencies, and hospitals into providing quality care for your mentally ill children. It is a place to go when you need help dealing with the system’s treatment of you and your mentally ill/autistic spectrum child. Whatever your issue, we will do our best to help, through both media awareness and our knowledge of legal requirements for care. We deal with insurance companies denying payment for inpatient care, hospitals trying to release psychotic children before they have stabilized, and Child & Family Services and other agencies trying to break up your family rather than help you. Our goal is to give is to publicize the struggles of families with mentally ill children against those suppose to help, publicize poor or insufficient care for mentally ill children, and give parents a voice that puts them in control of their child’s welfare. The Jani Foundation does not discriminate. Everyone whose lives are touched by mental illness are welcome.

Support Group for Parents with Special Needs Children

Support Group for Adult Mental Health Consumers

Yahoo Support Groups:

The Online Child Mental Illness Parental Support Network, created by Michael Schofield & Tony Dinkel (father of a child with Asperger’s Syndrome/Bipolar), exists to provide a social support network for parents raising severely autistic and/or mentally ill children. Whether your child has been diagnosed with bipolar, schizophrenia, psychosis NOS, or a Spectrum disorder, we do not discriminate. All are welcome. Currently we have members from all across the United States, Canada, and Australia. It is my hope that eventually we will have enough members so that one day there will be another parent with a mentally ill child close to you who you can turn to for support and assistance (and vice versa). For now, come share your story with others who know exactly what you are going through. You don’t have to be alone with this anymore. Since this group is unmoderated, it is a closed, non-public site open only to members. Click this link to request membership.

The Online Adult Mental Illness Support Network, a sister private group created to offer support and connection between adults living with mental illness. This is a brand new group and is still in its early stages, so please join and share. Like the Child Mental Illness Group above, this group is unmoderated, non-public, and open only to members to protect member privacy.

 

Educational

 

Ask a Bipolar allows others – the sick, caregivers (parents especially), curious, family – a chance to ask about the experience of living with mental illness in an anonymous way (not just BP, as I have Schizoaffective Disorder and….many others). We also post other experiences.


 

Personal Blogs

Jani’s Journey or January First (prior to March 2010)

The Mindstorm: Raising a Mentally Ill Child

Briana’s Life (features Briana and the Schaffers from “Born Schizophrenic: Jani’s Next Chapter”)

“Raising Crazy” (Facebook page)

The Whispering Child: The Quiet that Rages inside the Mind of a Young Child with Mental Illness

Adventures in Bipolar Land (Kristen and her son were featured on “Bipolar Mysteries” during Discovery Health’s 2010 “Psych Week”)

More Than Words (The Wohlenbergs from 20/20’s “Haywire”)

Finishing Off My Family

SchizoAutismTourettes-itis

“Cuz I Can Fly!: A Girl’s Travels Through Psychosis

Poems, Pain, & Healing

A Schizophrenic & A Dog

 

Books & Story Collections

Nutterville Stories-This Book, “Nutterville… and Other True Stories of Coping with Mental Illness” is a tribute to many troubled yet glorious people. Their stories told by a superb storyteller are deeply moving and will stay with you for the rest of your life.


Print/Web

Click here for a Q&A Susan and I did for “Born Schizophenic: Jani’s Next Chapter” on Discovery Fit & Health. This updates our family through May 2012.

ABC NEWS

Keeping Jani Alive: The Perils Of Childhood-Onset Schizophrenia Born With Mental Disease?
Childhood-Onset Schizophrenia a Devastating Disorder

RADHA CHITALE/ABC News Medical Unit
July 1, 2009

On a trip to a park near their home in Valencia, Calif., last week, a boy approached Michael Schofield and his six-year-old daughter January, called Jani, to admire their dog, trading stories with Jani about his own dog. Then, without warning, Janihit the boy in the chest. “She hit him in the chest because Wednesday-the-rat told her to,” Schofield said.  [More…]

20/20 “Haywire” Original Airdate 3/12/10-Full Episode Available online

20/20 followed us and two other families with severely mentally ill young girls for six months from August 2009 to January 2010.

 

LOS ANGELES TIMES

Jani’s at the mercy of her mind
Michael and Susan Schofield’s 6-year-old daughter is locked in a nightmare realm of schizophrenia — and no one can help her.

SHARI ROAN/Los Angeles Times Staff Writer
29 June, 2009

It’s been a rough week. A few days ago, at UCLA’s Resnick Neuropsychiatric Hospital, 6-year-old Jani toppled a food cart and was confined to her room. She slammed her head against the floor, opening a bloody cut that sent her into hysterics. Later, she kicked the hospital therapy dog. Jani normally likes animals. But most of her animal friends — cats, rats, dogs and birds — are phantoms that only she can see. January Schofield has schizophrenia. Potent psychiatric drugs — in doses that would stagger most adults — seem to skip off her. She is among the rarest of the rare: a child seemingly born mentally ill.  [More…]

 

For Jani Schofield, some progress — and major setbacks
UPDATE: JANI’S AT THE MERCY OF HER MIND
The 6-year-old, who has been diagnosed with schizophrenia, doesn’t fare well after a change in her environment, and the stress of caring for her takes a severe toll on her family.

SHARI ROAN/Los Angeles Times Staff Writer
July 09, 2009

On June 29, The Times profiled Jani Schofield, a 6-year-old diagnosed with schizophrenia, and her parents in “Jani’s at the mercy of her mind.” The article examined Jani’s bouts of rage, her make-believe world, and Michael and Susan Schofield’s efforts to keep their family together while also safely raising Jani and her toddler brother, Bodhi. Here is an update on the Schofield family.  [More…]

 

SHARI ROAN/Los Angeles Times Staff Writer

December 29, 2009 update

It was a little more than a year ago that January Schofield, at age 6, began to drift from reality. Suicidal, violent and plagued by hallucinations of rats and cats who conversed and played with her, she began the first of seven psychiatric hospitalizations.

As of today, Jani, 7, has been out of the hospital for 56 days, the longest period in 15 months. Together with her parents, Michael and Susan, and brother, Bodhi, 2, Jani is living a fragile existence… [More…]

The Signal (Santa Clarita’s hometown paper)

“Between Worlds” by Melissa Gasca January 16th, 2010

Some of Jani Schofield’s friends don’t like her little brother, Bodhi.

Sometimes they tell her to hurt Bodhi. And sometimes – even when she doesn’t want to – she listens.

If she doesn’t, Four Hundred the cat might scratch her, or Wednesday the rat might bite her.

One day, without warning, 7-year-old Jani started to gnaw on the toddler as if to eat him. Tears streaming from her eyes, she repeated, “I’m going to eat you, Bodhi. Bye, bye, Bodhi. I love you.” [More…]

 

Glendale News Press

January 25, 2010

An article on the college interns that did work with Jani.

 

 

Our Cause

 

 

Manifesto of The Jani Foundation

 

 

The purpose of the Jani Foundation is to improve the quality of life for children with mental illness and their families/caregivers. Primarily, the focus of the Jani Foundation is on aiding children with mental illness that includes some inclusion of psychosis, be it schizophrenia, psychosis NOS (not other specified), bipolar with psychotic features, or a child exhibiting symptoms such as delusional/paranoid thinking, hearing “voices,” (“commanding” or otherwise), consistent engagement with or fear of individuals only the child can see, or violence that does not appear to have an “external” trigger.

 

Education:

 

The Jani Foundation believes that all mental illness is BIOLOGICAL in origin. We reject the idea that psychotic illness can be “created” by any external forces. Although we acknowledge that psychological trauma can exacerbate psychosis, IT CAN NOT CAUSE IT. We believe this for the simple fact that if trauma caused psychosis, all humans would suffer from psychosis. Unfortunately, we all experience psychological trauma. It is part of the human condition. By the simply being alive and having to interact with the environment, a person will get psychologically hurt. The fundamental flaw with the trauma-based or “environmental” model of the development of psychosis is that if indeed the human mind was that fragile our species simply would not have survived to the present day. Such a glaring weakness in our psychological composition would have led to our extinction long ago. Our ancestors faced trauma on a daily basis and yet our social development has continued.

 

Therefore, psychological trauma, no matter how severe, does not cause psychosis. You cannot induce or create psychosis in an individual, any more than you can induce or create cancer.

 

But wait a minute, you say: many external factors cause cancer.

 

No, they don’t. Yes, smoking, exposure to asbestos or other chemical poisons, or radiation CAN increase the risk of cancer. But there are those who smoke for years and never develop lung cancer. Likewise, there are those who never smoke a cigarette in their life but still develop lung cancer.

 

This is because what ultimately decides our susceptibility to cancer is our genetics, whether or not we have a genetic “predisposition” to cancer already contained within our DNA.

 

So it is with mental illness. Just as with cancer science has not been able to establish an ironclad connection between cancer and genetics, science has yet to establish such an ironclad connection between genetics and mental illness. We have mapped the human genome, but that is only the beginning. We still do not know what many genes do. We understand only the basic function of most, and even that is mostly an educated guess. It may be decades before we understand how the sequencing of the genetic code can produce mental illness This is further complicated by the fact current genetic research is showing that predisposition to certain illnesses is likely not the result of a single gene but is probably caused by multiple genetic combinations, perhaps number in the hundreds or thousands. However, just as having the presence of a type of cancer in one’s family background increases your risk of that type of cancer, there is sufficient evidence that having the presence of mental illness if one’s family history dramatically increases the chances of one’s child or children having a mental illness as well.

 

Then there is our limited knowledge of the brain. Neuro-science, compared to other fields of medicine, is still in its infancy, due to fact that the technology that allows us to understand how the brain functions (such as the dopamine receptors in the brain) is relatively new, and because that technology is massively expensive and insurance companies often won’t pay for a single MRI, let alone multiple MRIs taken over a period of years.

 

Purpose of advocating for the biological model of mental illness:

 

1. To improve development of medications that can target specific areas of the brain that are not functioning properly.

2. To provide further evidence to eliminate “behavioral treatment plans” which essentially treat mentally ill children and particularly mentally ill adolescents as “bad kids.” There is a biological reason for their anti-social behavior. Mentally ill children and adolescents are well aware of what the consequences of their actions are. Yet they persist in their behavior. Doing something that one knows will result in punishment or the loss of privileges and doing it anyway is the very definition of “insanity” (which is a legal term, not a medical one). It is not in our nature to seek pain. It is in our nature to make our lives as easy as possible. A child or adolescent who continually “acts up” despite awareness of consequences does so because he or she CANNOT control their behavior. Behavior must be “redirected,” which means getting the child to focus on something else, something positive, rather than punished. All punishment teaches mentally ill kids is that “we,” the rest of the society, cannot be trusted.

3. To end the blaming of parents for the child’s mental illness. Parents love their children no matter what, but often find themselves the target of social services when they seek help. To often this leads to increased stress and dissolution of the family unit. We believe that the family unit is a mentally ill child’s best chance to reach his or her full potential.

 

Educating the public that mental illness in children is not a new phenomenon:

 

The diagnosing of children with severe mental illnesses like bipolar and schizophrenia is nothing new. It SEEMS new only because of “deinstitutionalization,” the process of closing state run mental hospitals that began in the late 1960s and continued through to the late 1990s. Had she been born in the 1960s, Jani would have been placed in the “Back Ward” at Camarillo State Hospital in Camarillo, Caifornia, the ward reserved for the most severe cases that could not function outside the hospital. I know this because I have met several nurses and social workers who worked there decades ago. There were children as young as twelve inside Camarillo State. When Governor Pete Wilson ordered Camarillo closed in 1997, most of the 300 remaining patients were under age 18, of whom most ended up in “group homes” scattered around Los Angeles County.

 

However, the Jani Foundation does not support “re-institutionalization.” We do advocate for the building of more inpatient hospital units for children, more beds in units that already exist, the separation of children and adolescents (as most hospital psychiatric units combine both children AND adolescents), and the development of psychiatric emergency rooms.

 

We support the continuation of the current system of hospitals serving as “acute” treatment centers only. However, insurance company “doctors” who have never seen the patient currently have the ability to deny payment for continued days. This process must end. The treating facility and the treating facility alone must be the ones who determine how long a stay is needed to stabilize a child dealing with psychosis, not insurance companies. The Jani Foundation supports the enforcement of “parity laws” which were designed to force insurers to treat mental illness the same way they treat physical illness.

 

Call to Action:

 

2. A federal law must be passed that prevents insurance companies from overriding the input of the treating physician.

3. Such a law must prevent insurance companies from dropping coverage on children with mental illness or reducing mental health benefits. All mental health benefits should be unlimited (unlimited inpatient days and unlimited outpatient psychiatric and therapy visits).

 

 

Generally, the Jani Foundation opposes sending mentally ill kids to “residential treatment centers” and is completely opposed to sending them to “group homes.” First, this does not help mentally ill children integrate into society. Failure to learn to function with their mental illness in society can lead from residential straight to jail.

 

First and foremost, we believe the family of the child is the best environment for the child. Therefore, it becomes our responsibility as fellow citizens to ensure the child and family have the support they need.

 

If residential becomes necessary, we will only support and recommend those residential treatment facilities that have the following:

 

1. The staff must be psychiatric nurses, because they have experience and knowledge with the medical needs of these children and the potential side effects of the medications. Most facilities do not have a nurse available 24 hours a day, 365 days a year. This is shocking.

2. There is a psychiatrist on call at all times.

3. The facility can deal with medical problems. This means there must be a medical doctor on call at all times.

4. The facility uses positive reinforcement of behavior ONLY. We oppose the use of restraints, mechanical or otherwise. We also oppose any facility that “locks” a child away, alone. If a child is psychotic, the worst thing you can ever do is leave them alone with their own mind. They are human beings. Talk to them. Play with them.

5. The facility believes in the biological model of mental illness

6. The facility encourages parental involvement.

7. The facility encourages interaction between the children/adolescents and the community. These places are not meant to be prisons.

 

 

Call to Action:

 

1. Child Protective Services needs to be checking up on the welfare of mentally ill children and adolescents inside residential facilities. Abuses must be investigated.

2. All employees of residential treatment facilities must be trained in the nature of psychosis and how to appropriately deal with it. Outside of nursing, advanced degrees in medicine, psychology, physical and recreational therapy, and education should be required.

 

 

Current Failures of Mental Health Care as We See It:

 

There is a six-prong failure of the current mental health care system in the United States. They are:

 

1. Lack of government funding:

 

This lack of funding predates the current economic problems in the United States. Taxpayers seem perfectly willing to let their money be used by state governments to hire private companies to build more prisons, but they don’t want to spend the money on services which would eliminate the need for increased numbers of prisons, as well as being less expensive in the long run. Currently, the California Department of Corrections is the largest provider of mental health services in the WORLD. Because of failures to fund local preventative services, many mentally ill individuals do not receive mental health care until they commit a crime.

 

The Jani Foundation does not support either Republicans or Democrats. This has nothing to do with 501c3 rules against political support of candidates because we are not, as yet, a 501c3. Rather, it is because neither party gives a damn about mental health, either for children or adults. Pushing for increased funding for mental health services is not politically popular. It is easier to generate a sound bite about being “tough on crime” than push for local and state mental health care services. Even though a mentally ill young man very nearly killed one of their own (US Representative Gabrielle Giffords), Congress still doesn’t seem to care, perhaps because it doesn’t affect their children. The other issues is that there is no “quick fix” for mental illness. These illnesses are lifetime illness and the truth is we must support these children and their families FOR LIFE.

 

2. This lack of funding for existing services like California’s “AB3632” law that requires school districts to provide mental health services to students means that state and local agencies participate in what we call “the politics of exclusion.” Rather than the goal being to provide services to as many people as possible, the goal of these state agencies (like the Department of Mental Health, Regional Centers, and contracted private non-profit agencies like the Santa Clarita Child & Family Center) is find any excuse they can to DENY services in order to preserve their meager budget.

3. What money does trickle down to these agencies is wasted by a bloated and uneducated bureaucracy. For example, absolutely no one at the Los Angeles County Department of Mental Health has any experience with severe psychosis, either in children or adults. These workers are bureaucrats who push papers and list rules, not provide real help. What these agencies need are not Masters’ of Public Administration. They need psychiatrists and psychologists trained in dealing with psychosis.

4. The “services” that exist are designed for the short-term, not long term support. Services like “WrapAround,” are designed to “teach” parents how to “handle” their children, ironic considering that we have yet to meet a Wraparound worker with any experience in dealing with psychosis. Wraparound is a short-term, behavior modification based program designed to teach parents how to be parents. What parents of mentally ill children need is respite care (which state workers experienced with psychosis), financial support (as gradually taking care of a mentally ill child erodes one’s ability to work, unless the child is sent to residential care), and access to therapies that will help their mentally ill child, such as animal therapy, equine therapy, art therapy, recreational (play) therapy, occupational therapy, and social/peer groups (as mentally ill kids feel more secure when they are with others who “get” them). Mental illness is a life-long affliction and the Federal, State, and Local governments must realize that a “band-aid” solution of sending out a recent college graduate in psychology to judge your parenting will not prevent the alienation of mentally ill children in our society.

5. The reintegration of psychiatry and psychology: Ironically, psychology was born from medicine. Freud was an MD. Yet as the 20th Century progressed, psychology moved further and further away from the science that gave birth to it. Modern psychology has become a joke, based more on “pop-culture” psychology than real clinical research. This leads to such ridiculous things as social workers and psychologists accusing a parent of a mentally ill child of “Munchausen By Proxy,” or the manufacture of a mental illness in their child to get attention. If psychologists had more medical knowledge or were actually required to do real clinical research for their degrees, they would know that has NEVER BEEN a confirmed case of a parent “causing” a mental illness. Munchausen By Proxy is a term used by forensic psychologists to describe parents who caused a PHYSICAL ILLNESS in their child during a criminal trial for murder, attempted murder, or child abuse. This is an example of “pop psychology” being applied in situations where it is not appropriate and since CPS social workers can remove a child from a parent without needing to show “just cause” (the only aspect of the criminal justice system that can do this), families get broken up.

 

The Jani Foundation advocates the termination of the “Marriage and Family Therapist” degree and the elimination of psychology as a separate area of study from medicine. We propose that psychologists and psychiatrists be educated together, leading to the eventual end of psychology as a separate field from psychiatry and the reintegration of the two sciences back together.. Honestly, the best therapist we know is our psychiatrist. She works more like a therapist, talking to Jani and to us, getting to know us, and not just prescribing medication in 15 minute sessions.

 

6. The failure of current non-profit organizations focused on mental illness.

When NAMI was formed in 1979, the landscape of mental health care in America was very different. State hospitals still existed and long term care was available. Services existed then that do not exist now. Therefore, NAMI’s focus became education about mental illness and the fighting of stigma. But what good is educating parents about mental illness IF THERE ARE NO SERVICES AVAILABLE TO HELP THEM. It is like being told you are going to die but not how to save your life. The Jani Foundation opposes donations to NAMI, The Child & Adolescent Bipolar Foundation, Autism Speaks, and any other organization that does not provide DIRECT SUPPORT to families dealing with mental illness. Families with mentally ill children need real services like respite care and financial support to keep a roof over their heads and food on the table. Our children require full time care. They must be watched all the time. That makes it difficult to work a full time job. I understand that the need is greater than what any non-profit can provide, but as long as the government fails to provide real help, the non-profits must. And if they don’t, they shouldn’t be begging for money to survive. Susan and I pay out of our own pocket every month now to help out other families with mentally ill children and we don’t have the pharmaceutical industry funding us or a $250,000 Pepsi Refresh Grant or a portion of sales at Toys ‘R Us (NAMI, CABF, and Autism Speaks, respectively). If these organizations feel all they can do is “educate,” fine, but they don’t need a ton of money to do that. The money is needed for providing real tangible help to mentally ill children and their families in need.

 

Soon, we will be setting up a financial co-operative between parents of mentally ill children. Everybody pays in when they can and if you need the money to pay bills all you need to do is ask.

 

If you want to donate, make sure your money is really going to a family who needs it, not to pay the overhead of a bloated non-profit so they can make a “video” or write up a pamphlet. You can visit www.facebook.com/janifoundation to see the families in need. Even if you can’t give money, come visit. Come see what families with mentally ill children are really dealing with.

 

And ask yourself why they come to two parents instead of to an organization like NAMI.

 

 

This is who we are. This is who we will always be. We will always be parents of a mentally ill child (or children). If you are ready to fight, if you are ready to commit to a war that will never end, come join us.

 

I can guarantee you, when you see a mentally ill child smile, it makes it all worth it.