WHY WE BEGAN P82 PROJECT RESTORATION by Deborah Geesling

My husband and I have been married for 34 years. We have four grown sons, a beautiful daughter-in-law, and two grandsons. Around 10 years ago, our third son began to show signs of what we first thought was normal teenage rebellion. Yet, as the years moved on, it became clear that something else was happening. At the age of 18, our son had his first psychotic break. 

Not only were we ill-prepared to help as our son developed a devastating brain illness, but the mental health system proved equally as daunting. Shell shocked, we began our blind journey into the world of advocacy for our beautiful son who has a serious mental illness with anosognosia (lack of insight). This condition makes fighting for his care extremely difficult. Thankfully, we live in a state that has Assisted Outpatient Treatment for individuals who do not understand that they're ill and need support. So many areas in our nation do not have this critical tool available and that's heartbreaking to us. 

Even with the on-ramp of Assisted Outpatient Treatment, we've had to fight tooth and nail for a continuum of care appropriate to our son's needs. America’s mental illness system is horrifically broken. It consists of antiquated laws, HIPAA constraints, insufficient use of Assisted Outpatient Treatment, revolving door hospital stays, scarcity of psychiatric beds, services, and skilled professionals, limited long term housing, and an unknowing public.

Fortunately, as a mother, I could stay home and devote my full-time energies to advocating for my son. So many people simply can’t do this. What's happening to their children? P82 Project Restoration was born out of our experience. There’s no going back for us. 

In the short term, we're working to bring Crisis Care Team training to faith groups in our area. We'll help places of worship learn how they can assist families and individuals who struggle with crisis situations including serious mental illness. We'll also continue to work with community leaders to improve our state’s mental health services.

Our dream is to open a home for men who struggle with persistent, serious mental illness — a home that will exemplify life with dignity and purpose. To learn more about our work, visit p82homes.org. Consider joining us as we crush hopelessness and restore our obligation to help those who cannot help themselves.

Deborah and Matthew Geesling

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A SHORTLIST OF SOLUTIONS FOR THE 4% WITH SERIOUS MENTAL ILLNESS (SMI) by Dede Ranahan

From my presentation to Covered California today, August 23, 2017.

SAMHSA: One in five in the US suffers from mental illness. One in 25 suffers from serious mental illness (SMI) such as schizophrenia (1.15%) and severe bipolar disorder (2.2%).  Of the 4% with SMI (11 million), 40-50% have anosognosia or lack of insight into their illness.

In no particular order:

• Reclassify SMI as brain diseases or neurological illnesses so the affected can receive integrated psychiatric/primary care and coverage in the physical health system. Just like Parkinson's, Alzheimer's, and dementia.
   
• Use Assisted Out Patient (AOT) treatment programs delivered with care and compassion. 
   
• Cut county mental health programs that don’t directly serve the needs of the SMI. I.e. wasteful and ineffective stigma campaigns. Make bussing out of county illegal.
   
• Rename the system “Mental Illness System.” Mental health and SMI are not the same thing.
   
• Reconcile the Medical Model (meds and beds) and the Recovery Model (peer support and social services). Make evidence-based programs compulsory for each model.
   
• End the Institutes of Mental Disease (IMD) Exclusion which limits beds.
   
• Change Medicare’s 190 day lifetime cap on psychiatric hospitalization.
   
• Amend outdated and confusing HIPAA laws that prevent families and caregivers from helping their loved ones. Allow caregiver evidence of “best interest.” Pass a Caregiver Rights Bill.
   
• Require law enforcement to receive and investigate reports from family and community members. Require Crisis Intervention Training (CIT) as routine training.
   
• Increase FACT (Forensic Assertive Community Treatment) teams to help ill persons remain in treatment during parole and probation.
   
• Provide beds in facilities that offer long-term psychiatric care. California Hospital Association: 50 mental health beds are needed per 100,000 people.
   
• Enforce the Mental Health Parity and Addiction Equity Act of 2008, including parity for the 4% on Medicaid. (The 4% don’t receive “essential benefits” under the CA WI Codes.)
   
• Stop dumping the SMI into jails and ERs. Treatment and Advocacy Center 2014 study: Mentally ill inmates are ten times the number of patients in psychiatric hospitals. 
   
• Eliminate the inhumane standard — “Must be a danger to self or others” before intervening.
   
• Encourage family advocacy groups and consumer advocacy groups to work together.
   
• Create supported housing, employment, and education.

Photo credit: Michael Toy

WALK A MILE IN OUR SHOES by Kimberlee Cooper West

Walk a mile in our shoes. Our children are rarely mentioned. In the circles we travel, people pretend our son is nonexistent. Something, anything would be better than nothing. It would be so nice to have the same privileges as those who have medical diseases. People do not understand our kids. They do have a medical disease.

Tonight, I watched a new show called "Human First."  Half way through, I started crying after seeing the enormous help for patients with physical illnesses. The amazing support patients receive at the NIH Hospital are incredible. No one complains about their high-priced therapies.

People complain about people with mental disorders using up too many resources. We pay insurance like everyone else. Why are our services rationed? Or we hear, "Well, we can't help everybody." Insinuating medical services would run out due to us? Where is our place to drop off sick kids? Where are our research studies? When do they receive hospitalization and treatment?

If only they would add up the Department of Justice bill. Why is it okay to torture our children with jail and prison? My son is still in jail since February, 18, 2017. He was in a hospital. Within five days of release, he was arrested. He was so unstable he ended up in solitary confinement for almost two weeks. 

One good thing is my son's coming to terms with his own race. After being called the "n" word at school (fairly sure it triggered this last episode), Ty said, "Mama, no, really, I'm not black. I'm white." We hired Sedrick, his African American counselor to help him with this. Then Ty fired Sedrick.

We'd tell Ty, "We love every black bone in your body." He called last week to inform us, "I use grease now. My bunkmate, Larry, (who is black) showed me how."  We said, "We're so happy to hear that." One upside. I think his racial identity crisis is finally cured.

In the meantime, my son's treated like a maximum security prisoner in a county jail. He's locked in thirty hours at a time. He hasn't had exercise, gym time, or been allowed outside since February.  Ty was in solitary confinement from February 18, 2017, to March 10, 2017, when he was moved into the general prison population and assaulted. The jail was irresponsible by not placing him in their disabilities unit. That unit was full. For this, we hold the jail accountable. Ty still has blurry vision from the concussion he received and still no MRI.  He's still hearing voices. He's being denied an education — this would have been his senior year.  We attended his friend's graduation. It took all the strength we could muster.

County mental health (CMH) denied him a supervised locked-in-at-night placement in a group home. Now we've found out he has co-morbid illnesses — autism and mental illness. CMH was supposed to give us this information. They, of course, never documented our requests. They also didn't record Friday, the day before his arrest. We begged CMH to help us get a civil commitment. 

Today, we hired lawyer #4 for social security. Sad to say, next week I'll probably hire lawyer # 5 to address the Freedom of Information Act and the denial of the video showing Ty being assaulted, and possibly #6 to obtain an education he has been denied by the jail. This is contrary to state laws. For the record, Lawyers #2 & #3 are for his legal cases. Lawyer #1 is for his guardianship.

Sometimes memories flood over me in waves. It's so hard to get rid of anything that reminds me of my little boy. He was a really good boy. He took medicine for ADHD. He had no behavior problems in school. Socialization was hard for him. It's hard not to beat ourselves up, especially about the bullying and how long it was before we realized he was sick.  What if we had caught it sooner? It came on so fast.

Ty is eighteen. We've hired eight psychiatrists in his life. I miss my son horribly.

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HELPING MY DAUGHTER HAVE A CHILDHOOD by Elizabeth Courtois

I've debated submitting this for a while. A lot of people think childhood mental illness doesn't exist. A lot of people tell me it's just normal kid stuff. It's not.  

When we give birth to our children, we expect a wonderful childhood. We have hopes and dreams. We look forward to watching them learn to ride a bike, go off to their first day of school, and experience the awkwardness of having a first romantic partner, however innocent it may be. That was me in October of 2008.

It's currently August 2017 and I'm wondering if my daughter, Eva, will even be able to finish a full year of school because she hasn't ever really finished one. In kindergarten, we first entered the world of psychiatric hospitalization. She made it until the last four days of kindergarten. In first grade, she was pulled out on an extended medical excuse a couple weeks before the end of school. In second grade, she was placed under a court order and pulled out of school a full month early.  

Because, you see, Eva's been diagnosed with childhood-onset schizophrenia. And for whatever reason, February to June are the worst for her. Nothing stops you in your tracks faster, as a mother, than your 7 year old with a feral yet blank stare in her eyes and a Santoku knife in her hand, ready to charge. Or barricading herself in your living room screaming strings of words that make zero sense. Or pounding her head into a glass window so the voices will stop. Or taking a butter knife and showing me exactly how she plans to end it all. So the voices will stop. So the chaos will stop.  

My daughter's had two suspensions for intentionally trying to injure staff at school. Her teacher said, "The child disappeared out of her eyes and something else took over — a hijacked brain making it impossible to be a normal 8-year-old child."

Eva's never known a real childhood. All she knows is psych hospitals, doctors, and medications. Nevertheless, we love her — her dad, three sisters, and I. We are her warriors. We are her protectors. We take her abuse because we know she doesn't mean it. We all understand she's not a physically affectionate individual. But she shows us affection when she draws us beautiful pictures, when she decides to be more social and play Barbies with her sisters, and when she makes a paper tiara and puts it on Daddy's head and dubs him Princess Daddy.

We never expected this. We never asked for this. But this is what was given to us in life. It's not easy. It's often frustrating, emotionally draining, and physically exhausting. But Eva's my daughter. My life's blood. And I will do what I need to do to make sure she can attempt to have a childhood.

ZAC, MY DARLING SON by Laura Pogliano

He was the little boy who wouldn't eat until you had lunch also.
He kissed every animal and crustacean and reptile he ever saw.
He bounced on my bed and sang in his baby lisp, "When I Gwow up, I'm having Wots of Babies, Cuz I Wike Them!"
He swung on our swing butt naked, singing, "It's Good To Be King,"
He loved God and at 5 announced, happily, that one day he'd see his real Father, and he couldn't wait! He'd be "where everything was beautiful and there was never any pain."
He got his own feelings hurt when his puppy got scolded and when a classmate with disabilities was chosen last.
He cried so hard the first day of kindergarten, because there was too much to remember and he "forgot to make a friend."
He purposely partnered on school projects with the kid with no partner.
He refused to do homework for a teacher who made racial remarks toward the Mexicans in their class.
He told me in second grade he'd thought of a way to never have to go to college and leave me.
At 9, his goal was to marry a best friend, a girl who wasn't concerned with fashion. He thought, practically, that picking one out sooner rather than later was a good idea.
At 10, he went to the store and bought shoes for his friend for Easter who he thought was wearing "girl shoes."
He defended his rescue dog Butters' destruction of most of our shoes and half the house with, "You people don't understand. He's just upset cuz he got left."
At 11, he told me he might have bad news for me. Boys couldn't date their mothers, he'd discovered, so our Friday night movies had to stop. 

I will never get over what happened to this child, the torment he endured and the beautiful life he was cheated out of. He reminds me of the Cummings poem, "i sing of Olaf, glad and big," especially the last line — "he was more brave than me: more blond than you."
 

Laura and Zac

Zac

Zaccaria Pogliano was born August 1, 1991. He died January 18, 2015.  Zac suffered from serious mental illness. 

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MISSING - LAST SEEN IN MESA AZ

UPDATE: Ryan called his mom at 3 a.m. this morning and let her take him to the hospital.

Another mother's beloved son's gone missing.
Imagine if this young man were your son.

WHAT HAVING SCHIZOPHRENIA IS LIKE by Joe IV

One of the many things misunderstood about schizophrenia is that people think it's a disease or that it automatically makes the person dangerous. The negative stigma it's gotten makes it harder for the ones who have to live with it. They are people's sons, daughters, mothers, brothers, sisters, fathers and friends.

The illness itself can actually be a gift. There are metaphysics behind the illness. There are cases of schizophrenia corresponding with chakras. Once someone with schizophrenia reaches spiritual maturity, they can be the most compassionate people because they explore many different perspectives. They're usually open minded people. A schizophrenic mind can be intelligent, empathetic and creative despite it's drawbacks. It's a matter of perspective within the person who has it. People with schizophrenia have a hard time focusing on a mind set and staying consistent. Their dial always turns. They can be all over the place. That can be improved with spiritual maturity and dedication. That involves a high level of self awareness.

It's hard for people like me to maintain a sense of self. Our minds are a broad spectrum. People who don't have schizophrenia usually just stay on one channel their whole lives, maybe wandering a little bit. People who have schizophrenia usually do a complete 360 degree spin on the dial. It can be extremely frustrating when they have a realization of self or knowledge just to have it all of a sudden slip away. Imagine spending hours building a complicated puzzle just to see all the pieces fall away and disappear. They're easily distracted in their own minds. Isolation can be a best friend and worst enemy at the same time. In isolation, they don't have to deal with the outside world but they have to deal with being alone with their thoughts.

Schizophrenia can be induced by trauma. At some point in their lives they may have had their personal boundaries violated. Many with schizophrenia die from suicide or poor health before they grow old due to not knowing how to cope. It's a search for sense of self. It can be very frustrating being an enigma or outcast of society. There's usually a lot of shame and guilt involved. No two people with schizophrenia are the same and they shouldn't be treated as such. It is one of the most misunderstood and mysterious mental illnesses on the planet. A lot of people don't even research it before projecting judgments on the ones who have to live with it.

Joe IV

Joe IV's Music Page

"Samudaya Sufferer" on youtube.com