Cindy: Fighting for my son

It’s been almost 10 years that I’ve fought with this system. It’s reprehensible that I’ve needed to fight even one day.

My story is an extension of those who came before, those with whom I now share my life and those who will someday. I have 3 children. My oldest is my 29 year old son. He showed signs of being gifted from very young. He knew his alphabet at 18 months, read full books when he was 3 years old and added in double digits by the time he started kindergarten.

This continued throughout his school days. When he was asked how or when he learned something, he often responded, “I don’t know, I just know.” He finished high school with academic honors and won the Boettcher Scholarship, which provided him with a full scholarship to college. He attended CU Boulder with an intention to study nuclear medicine.

During spring of his freshman year, he called me in a panic. He cried to me and said everything was wrong at school and he wanted to come home. I drove to Boulder two days later to help him.

I need to mention that aside from various teenage “angst” he never had behavior or academic problems. He was a self-proclaimed pacifist, had healthy friendships and he and I were very close.

The day I went to Boulder I took him to the counseling center. After one hour the clinician stated that he was merely depressed which was typical for college freshmen. She suggested he see an outside therapist and start medication. He and I went for a swim then to an early dinner. Afterwards he said he felt much better and believed he overreacted.

He finished his freshman year and came home very different from the young man who left for college. He couldn’t sleep, eat or hold a job. He wandered our neighborhood in the middle of the night and slept most of the day. His speech and thought became disjointed and confusing. The gifted, intelligent and articulate young man was disappearing.

In January of 2008, he threatened suicide and was admitted to a psychiatric unit. He was diagnosed with schizophrenia, put on medication and after two weeks was told to follow up with a private clinician. I soon learned this was the start of “treat ‘em and street ‘em” days for us and the start of a long, dark road.

Because he was already an adult, I was not given any information about his case, nor could I do anything to help him get assistance. I did take him to a psychiatrist and paid out of pocket for his care. Because my son would not sign consent, I could not receive information from the psychiatrist.

The doctor prescribed various medications; all were either ineffective or my son was non-compliant. His condition worsened.

In October of 2008, he drove my car through the front doors of Grandview High School. He gave a variety of reasons. He did not have the intention of harming others – he did this on a Sunday evening – but he did want to end his life. Earlier in the week he said to me, “Mom, they can’t diagnose me with schizophrenia; if they do they’ve given me a death sentence.”

He was taken to jail and spent two months there. He was not provided with mental health care, access to help or medication. He came home after his release and his behavior got worse. I took him to a psychiatric hospital and again, two weeks later, he was released with meds and sent home. He chose to stay with friends.

It was the end of February when he was at my front door. He was adamant his diagnosis was wrong and asked if he could stay at home while he saved money for his own place. I agreed. The first Sunday in March he assaulted me and threatened to kill me. The sheriff came to my house and once again took him to jail. This time he was incarcerated for more than one year.

While he was in the county jail, he was given lithium with little medical guidance. I later learned that when a person takes lithium their thyroid should be monitored. Hypothyroid issues can lead to mental health problems which will exacerbate an illness such as schizophrenia. My son’s thyroid was almost non-functioning when he was finally tested. Needless to say, his mental health declined and he was placed in a cell by himself and was closely monitored.

After one year of many court appearances a Public Defender was able to convince a judge my son should be released and placed on probation. A guard at the detention center called me told me my son would be released and asked if I was safe. I was told my son made many comments about harming me.

This was the middle of a very cold winter and my son was to be released from jail, given no money and provided with no means of housing. He was also no longer taking medication. My phone calls started.

For two hours I called every social service and human service office possible. I was finally told to call my local representative and this is what I did. Within 30 minutes the person in charge of Arapahoe/Douglas County Mental Health called me and offered to help.

This was the start of my son being bounced around mental health facilities, given more medications – all of which failed – and finally given a case worker. He spent some days as transient and others in short term housing. Months would pass when I didn’t hear from him.

I discovered a website called “vinelink.com” and managed to track my son through this site. For those unfamiliar, this site provides information about people who are incarcerated, so I only knew where my son was during the times he was in jail. My calls to the jail started with the following memorized line: “I am well aware you cannot provide me with information, however my son is in your facility, I am his mother and would like to provide you with information.”

Eventually my son found semi-permanent housing and a reliable case worker. He and I reestablished a relationship, though by this time his illness had caused enough deterioration that he no longer knew me as his mother, I was simply a nice lady who looked familiar.

The last time I saw my son, we were in his case worker’s office. My son told me I was “a Nazi who was trying to control his bowel movements.” Statements like these became commonplace and I knew they were as real and true to my son as much as anyone else would say, “the sky is blue and grass is green.” This became our new normal.

One month after this meeting, a woman called me to tell me she was my son’s new case worker. She went on to ask if I knew where he was. Of course I didn’t, he rarely contacted me and every clinician cited HIPPA rules if I asked about him. She said he had not been heard from for a month and asked if I knew anything. This was in 2013.

I was appalled. Someone from an agency who refused to keep me informed calling to ask me for information about him? They were supposed to keep my now completely disabled son safe and I was hearing that they didn’t know where he was and hadn’t for more than a month!

I went to the last known residence and looked for my son, then to a police station to file a missing person’s report. Initially, I was told they could not help me because he was an adult. A compassionate detective listened to my situation and agreed to file a report. Several months later he contacted me and told me my son was located just outside San Francisco and, yes, he had been incarcerated.

Again, my phone calls began and again, the worn out line: “Sorry, because of HIPPA laws….”.

I kept track of my son as much as I was able, which wasn’t much. One day a bill came for him from an ambulance company. Through some tracking, I learned he was once again hospitalized, incarcerated, then sent to live on the streets. It was finally in November of 2015 when the real action started.

My younger son called and told me to check vinelink. My oldest was in jail again, this time for attempted murder and robbery. My mission began. I no longer accepted, “We can’t give you information…” How can they get approval from my son to share information with his mother when in his mind I no longer existed?

I was on my phone from 9 to 5 and sent 50 e-mails every day to every politician (at both state and national level), every news outlet, and anyone else I wanted to light a fire under. I contacted the ADA in Washington because, as a disabled person, my son’s rights had not only been ignored – they were being obliterated. I let it be known that my son was a danger to himself and others and had a history of such.

I’ve said for many years that the most horrific event a mother could endure was the loss of her child. The second on that list is the knowledge that her child caused the loss of another’s child. I was not going to sit back and allow either to happen.

It’s inhumane and sad that a completely disabled person cannot get care they desperately need to merely survive. I am currently physically disabled. I’ve fought for two years to get disability benefits; at times my Medicaid coverage is denied. Yet, I am able to advocate for myself. What happens to those without that ability?

My son was again released from jail but this time social workers and case managers were on hand to help him. This was due to a combination of my advocacy and a better system established in California. The case workers there communicate with me; they keep me involved in his welfare. He no longer fights for benefits he doesn’t understand he needs and I no longer fight to know the welfare of my son.

My son has left us mentally. His latest belief is that he had 3 mothers (I am now his great aunt), his father was a walrus and he was born on a black hole. Look in a mirror; think about the person you see. As real as that is to you is how real that belief is to my son.

The current lingo for his condition is “SMI”: serious mental illness. Call it anything you like, it does not change his reality. It does not change the reality of the futility of our mental health system. This is not a matter of a person able to work and not willing to; he and many others like him need our help.

The all too often question is, who will pay for this help? My suggestion is to think of this as two columns: accounts receivable and accounts payable. Some may think the health care costs are in the payable column. But what of the loss of valuable lives from mental illness? Just one person, my son, a potential healer was removed from the receivable column and ruthlessly thrown into payables. How much more has been lost because this talent is forever gone?

“If a clod be washed away, England is the lesser.” We all lose when one person is thrown to the lions of mental illness. Why did Colorado turn a blind, heartless eye to my son?

My son told me once that he would ask people a question; he would pose a statement and ask if “you” or “I” was the grammatically correct word in that statement. If they could not answer he said he took away their use of pronouns. He didn’t know how deep his ramblings went.

How often do we dehumanize a person by making them a disposable pronoun? I appreciate the need for privacy and confidentiality; I’ve avoided using my son’s name for those reasons. However when a transient, mentally ill or otherwise marginalized person enters the system they simply become “he” or “she.” My son is still a brother, cousin, friend, son and a person. He and many like him deserve to be treated with respect and dignity.

My son was repeatedly left to provide for himself, but he no longer understands what that involves. The authorities who were responsible for his well-being cited pages of laws for why they ignored their responsibility. Our politicians and law makers continuously find reasons why it’s okay for the mentally ill be considered disposable.

It’s been almost 10 years that I’ve fought with this system. It’s reprehensible that I’ve needed to fight even one day. When others ask, “where are their parents/family?” I want to scream, “RIGHT HERE!” but no one hears me; no one hears my son or others with various afflictions.

“Any man’s death diminishes me for I am involved in mankind.”

The time has come and gone for us to start listening.

— Cindy Rumlow