Friday, July 17, 2015

To the Parents of James Holmes

The World May Blame Your Son, but We Know the Truth, and We Support You
10 million children will grow up to be adults who have
serious mental illness like James Holmes. Like our children. 


Twenty doctors agree that James Holmes has schizophrenia, a mental disorder that has been described as “young person’s dementia.”   But the fact of his illness did not prevent Colorado jurors from finding the young man, who opened fire in an Aurora theater in 2012, guilty of 24 counts of murder in the first degree, two counts for each victim.  After the verdict, a girlfriend of one of the victims declared, “This is a huge step forward.” 

The shooting was truly awful, and the grief and even anger of the victims’ families is entirely comprehensible. But the parents of the ten million U.S. children with serious mental illness, children like James Holmes, feel differently. We see the verdict as a huge step backward, a clear message that the stigma and discrimination associated with mental illness is as strong as ever, and that the public’s fear and ignorance of mental illness have not abated since 2012.

Mass shootings are incredibly rare, representing only two percent of all gun violence in the United States. Yet the daily tragedies—incarceration, homelessness, suicide—that disproportionately affect our children who have serious mental illness do not make the headlines.

In December 2012, after another mass shooting involving a young man who likely had serious mental illness, I wrote an essay sharing my own family’s struggles to find mental healthcare for my then 13-year old son. The essay, “I Am Adam Lanza’s Mother,” became a rallying cry for mothers who had tried and failed for years to find treatment that worked for their children.  As a result of my cry for help, my son was diagnosed with bipolar disorder and got treatment that works. Today, he is in a mainstream school earning good grades, hanging out with his friends, and planning for college. With treatment, my son is no more likely to be violent than anyone else.

In the wake of the Newtown tragedy, I was also able to connect with a passionate community of mental health advocates. Eight of these mothers, all powerful advocates in their own right, wrote letters to Robert and Arlene Holmes.  Here is some of what they shared:

Last summer my 12-year-old daughter Morgan was charged with the crime that would be dubbed by the media as the “Slender Man Stabbing.” One moment she and her two best friends were eating donuts at my kitchen table. The next moment, she had been charged with a crime of unimaginable violence, and was torn suddenly and unexpectedly from my home. You have expressed feeling guilt for not knowing your son had mental illness. I know how that feels. I didn't know that my daughter was sick, either.—Angie Geyser

We managed to keep our son out of the criminal justice system until 2012. He does not think he has a mental illness even though he has spent the majority of his adult life in locked psychiatric facilities. Today he sits in jail awaiting a bed in a state hospital. We all believe in treatment before tragedy!—Teresa Pasquini

It wasn’t your beautiful son who hurt all those people.  It was the untreated brain illness that is so misunderstood.  It is my hope that we can educate people to understand that people with schizophrenia are not evil; they are ill. —Kathy Day

More children in this country die by suicide than cancer, diabetes, and every birth defect combined, but somehow, trying to keep our son alive was considered “bad parenting.” We learned that our son’s illness is in his brain, not in his upbringing. We could have so easily been where you are.—Tom and Chrisa Hickey

I hope your son is judged with compassion and given the help and care he needs. I also hope you know that you are not alone in this. We have a community of parents and caregivers of those with serious mental illnesses, and we care and support each other.
—Marcie Bitler Sohara

Our son was an adult now, and his right to have irrational thoughts flying loose in his mind were supported by maladaptive laws written in the 1960s that make one thing crystal clear: after age 18, our boy would have to present as a “danger to self or others” if he was ever going to be returned to a safe residential facility. The deinstitutionalion experiment has cost countless lives; families have lived with personal tragedies of lost loved ones for decades without anyone taking notice. Only when our sick kids explode in the community do people share an opinion. You are not alone. —Jennifer Hoff

Please don’t blame yourself. It’s not your fault; it’s not your son’s fault; it’s not your husband’s fault. It’s your son’s brain disease. It’s our broken mental health system. It’s the lack of funding to find a cure and lack of education to each school administrators, family members, judges, law enforcement, and lawmakers. —Marla Durkin-Pope

My hope for you both is that you find comfort and kindness in those of us who, even in a small way, understand and empathize with the experience you now have to go through.  We wish you could have known earlier that there were people much like you, struggling to find answers, comprehend, and keep ourselves afloat. —Jenifer and Jim Walsh


Their letters are reprinted in full with their authors’ permission below.

***

Dear Robert and Arlene,

We want you to know that you are not alone. There is an entire community of parents who understand and support you. We are the mothers of children who have been diagnosed with serious mental illness. Some of our children have committed violent crimes, and some of us simply understand how these tragedies can occur as a result of a brain disease.

Last summer my 12-year-old daughter Morgan was charged with the crime that would be dubbed by the media as the “Slender Man Stabbing.” One moment she and her two best friends were eating donuts at my kitchen table. The next moment, she had been charged with a crime of unimaginable violence, and was torn suddenly and unexpectedly from my home.

You have expressed feeling guilt for not knowing your son had mental illness. I know how that feels. I didn't know that my daughter was sick, either. She was only diagnosed with schizophrenia after being declared incompetent to stand trial and being evaluated at a state psychiatric facility. I feel as though my guilt for not knowing Morgan was sick will forever consume me from the inside out.

Please do not hesitate to reach out to us for support. If you feel uncomfortable doing that, please know we all hold you close to our hearts.

Angie Geyser

***

Dear Mr. and Mrs. Holmes,

I am the proud mom of a 32-year-old adult son who has a 16-year history with serious mental illness. He was diagnosed at the age of 16 with bipolar disorder following his first hospitalization. He has been involuntarily hospitalized over 50 times. His diagnosis has changed to schizoaffective disorder. He suffers from a lack of insight, which is called anosognosia. He does not think he has a mental illness even though he has spent the majority of his adult life in locked psychiatric facilities.

We managed to keep our son out of the criminal justice system until 2012 when he was arrested while on a hospital unit at Napa State Hospital in California and charged with assault. He has been deemed incompetent to stand trial four times. Today he sits in jail awaiting a bed in a state hospital.

In May 2015, I travelled to Washington DC to speak on Capitol Hill about my family’s tragedy. I joined families from across the nation who refuse to be silent and let our families and communities continue to suffer. We all believe in treatment before tragedy!

Your son and your family are in my heart and thoughts. We are with you, and you are not alone.

My best,
Teresa Pasquini

***

Dear Mr. and Mrs. Holmes:

My family member suffers from schizoaffective disorder with constant psychosis. There’s just something about psychotic illnesses that make us all feel alone.  It’s so isolating.  In James’s case, it’s worse because his illness impacted so many others. The system should have provided treatment to him to prevent tragedies that happen too often.

I’m so thankful that my family member has not hurt anyone--yet.  But for the last four months, he’s mostly stayed in his room.  He lives in fear every day because his “spirits” constantly threaten his life.  I can’t leave him alone at times, because his fear of being killed is so great.  I worry that these spirits will cause him to act out and hurt himself or someone else.  I know that my loved one could experience what your son’s illness did to him.

I’m fortunate because he lives with me.  I can keep an eye on him and am aware of changes that could be red flags.  You weren’t in the same town, let alone the same state as James.  There is no way you could have known what his illness was planning.

And that’s just it.  It’s the illness that controlled him.  It wasn’t your beautiful son who hurt all those people.  It was the untreated brain illness that is so misunderstood.

I hope James gets the treatment he needs and deserves.  And I hope you both can have some peace.  You hear some very ignorant statements about your son.  It is my hope that we can educate people to understand that people with schizophrenia are not evil; they are ill. 

I’m sending good thoughts to you and your family.  I hope you know that you are not alone, and there are many of us who would welcome you!

Sincerely,

Kathy Day

***

Dear Robert and Arlene:

People look at me cross-eyed when I say we're lucky my son Tim was diagnosed with schizophrenia as a child. 

He was 11 when we first got the diagnosis, the last in a long line of them, from autism to speech disorders to depression and bipolar disorder. He was in a psychiatric hospital when he was diagnosed, after a suicide attempt that forced us to acknowledge he was sick.  Three years and 11 hospitalizations later, we made the agonizing decision to put Tim into long-term residential treatment because he was so delusional and so violent that we feared for his safety, our safety, and the safety of our other children.

We were alone then. We were accused of filling him with poisonous medication because we didn't feel like creating structure or enforcing rules. Strangers cursed us when he had a meltdown in public. Acquaintances felt justified in beating their breasts and declaring they would never send their children away. More children in this country die by suicide than cancer, diabetes, and every birth defect combined, but somehow, trying to keep our son alive was considered “bad parenting.”

In residential treatment, Tim learned what it was like to live without the voices. And since he was still a child, we were able to ingrain in him the importance of his meds and therapy to keep the voices at bay. We learned that our son’s illness is in his brain, not in his upbringing. He's 21 now.  He can never be left alone for more than an hour, or his anxiety and paranoia kick in.  He takes his meds, and today, they are working.

But I remember watching him being frisked by the sheriff we had to call after he broke every door in the house and threatened to kill us. There's a razor thin line between that day and today. We spend every day staving off a return to that day.  We know we're lucky to have the opportunity to do so. We could have so easily been where you are. 

We will continue to keep you in our prayers. 

Tom and Chrisa Hickey

***
Dear Robert and Arlene,

I have a 26 year old son who has been diagnosed with paranoid schizophrenia. He was only 19 when he had a complete break with reality, and we were able to get a diagnosis. I have been luckier than most because he knew something was wrong, and we were able to get help; however, I am fully aware that might not have been the case. I tell you this because I want you to know that the pain and the suffering you and your son are going through are always on my mind.

I know that the seriously mentally ill are operating with a sick brain, and your son’s actions were due to that sickness. I hope your son is judged with compassion and given the help and care he needs. I also hope you know that you are not alone in this. We have a community of parents and caregivers of those with serious mental illnesses, and we care and support each other. I hope you can find us and take some comfort in knowing you are not judged by us.

Sincerely,

Marcie Bitler Sohara

***

Dear Arlene and Robert,

I want to thank you for speaking up in response to the “evil” and “monster” taglines used liberally by the media towards your son James. Thank you for being brave enough to endure people spewing anger and hatred towards you as you attempt to educate our nation on the painful reality that serious mental illness can be fatal if left untreated and how a devastating psychiatric diagnosis like schizophrenia can wreak havoc on an individual’s life, stealing the ability to reason and decide rationally and potentially leading to tragic outcomes.

I cannot imagine how you must feel as parents, going through the courtroom experiences when what your son really needs and deserves is to be in a psychiatric hospital. I understand personally about losing an adult child to an illness that steals his mind and free will, and I know what it is like to watch helplessly as people judge and condemn your child for behaviors resulting from a brain that is too sick to understand the consequences.

My 22-year-old son is mentally ill and spent the majority of his childhood and all of his adolescence in clinical day programs or locked residential facilities “for safety.” Despite the fact that he was disabled, receiving SSI, and was never was never able to manage his life in a safe manner, when he aged into adulthood, he received his shoe laces back and a plane ticket “home “and free reign to manage his life completely without “interference from his parents” (his case manager’s words).

Within months of returning home, he had multiple run-ins with the law, several psychiatric hospitalizations, and he was kicked out of two group homes. We begged our county health department to put him in a hospital. We presented 500 pages of medical records and his doctors’ letters advising he be reinstitutionalized for treatment of his illness. This meant nothing to Orange County. Our son was an adult now, and his right to have irrational thoughts flying loose in his mind were supported by maladaptive laws written in the 1960s that make one thing crystal clear: after age 18, our boy would have to present as a “danger to self or others” if he was ever going to be returned to a safe residential facility. There was nothing his father and I could do but watch helplessly as he was consumed by the revolving door.

He went missing for days at a time, and started smoking pot and drinking often. We were constantly worried, not only of what would happen to him but also about collateral damage that might be inflicted in the community. Less than 36 hours after his last release, he walked into Bank of America with a threat scribbled on a sticky note to blow up the place if the teller didn’t hand over a thousand dollars. He will spend the next 13 years in the California State Prison. He has spent many months in solitary confinement and now has “Crazy Boy” literally tattooed across his young face; despite this, he has been denied his psychiatric medicine because he is not “sick enough.” in other words, we have to wait until his mental state declines even more before he qualifies for his psychiatric meds that he has taken since age 12.

Our jails have become hospitals, but they use pepper spray instead of a syringe. Nearly percent of prison inmates have a serious mental illness. The deinstitutionalion experiment has cost countless lives; families have lived with personal tragedies of lost loved ones for decades without anyone taking notice. Only when our sick kids explode in the community do people share an opinion. You are not alone. I am praying for everyone who has been impacted by our broken mental health system and for treatment for James.

Kindly,

Jennifer Hoff

***

Dear Robert and Arlene,

I have a 30-year old daughter who has been sick since high school. When her problems first started, we took her to psychologist who diagnosed her with “normal teenage defiance.” For ten years, no one knew what was going on in her beautiful sick brain. They call it “presenting well.” In secret, she sees aliens, a FBI informant, the Messiah, and I can go on and on. Finally, after ten years, her illness got so bad that other signs related to schizophrenia became apparent.

It took three misdiagnoses from professionals and education on my part to really grasp what was going on when those external signs started to become apparent. Please don’t blame yourself. It’s not your fault; it’s not your son’s fault; it’s not your husband’s fault. It’s your son’s brain disease. It’s our broken mental health system. It’s the lack of funding to find a cure and lack of education to each school administrators, family members, judges, law enforcement, and lawmakers.  

There are many parents like you out there who support you, love you, and will be there in spirit with you every day in that court room! Please come to our groups on Facebook. You have a support system of loved ones whose family members have a brain disease like your son. Become advocates. You have the support to fight for your son’s life, and his life matters!

Hugs!

Marla Durkin-Pope

***

The bravest are the most tender – The loving are the daring. –Bayard Taylor

Dear Robert and Arlene,

Underneath the sullen and distant fa├žade lies the heart of a sweet young man.  Our son longed to be free. 

At the tender age of 13, our son attempted to end his life so that he would no longer be tormented by the voices, commands and “Book” in his head that told him to do things.  Our son struggled with violence at home, epic meltdowns, running away, isolation, threatening suicide constantly, and enormous anxiety and paranoia since age 7.  I read more than I ever thought I could read.  I was mocked by psychologists and condescended to by psychiatrists, until my son’s suicide attempt resulted in a diagnosis of early onset schizophrenia. 

When he had his psychotic break, he spent 42 days in a behavioral health hospital, where he was finally put on the last resort medication.  We are grateful and fortunate that it is working for him and keeping the suicidal ideation and hallucinations away.  We also know the damage that has been done to our family.  Another of my sons has a serious mental illness as well.  We struggle.

My hope for you both is that you find comfort and kindness in those of us who, even in a small way, understand and empathize with the experience you now have to go through.  We wish you could have known earlier that there were people much like you, struggling to find answers, comprehend, and keep ourselves afloat.

Brene Brown shared “Empathy’s the antidote to shame: The two most powerful words when we’re in struggle: me too.”

Your family is in our prayers.  Please let yourselves be supported.

With love,

Jenifer and Jim Walsh