Photo by Michelle Bixby, The Citizen
Whenever I give a speech, I know there are parents in the audience who have been through much worse than what my family experienced. I was reminded of this last week when I spoke at Cayuga Community College in Auburn, New York, at the invitation of the local chapter of the National Alliance of Mental Illness.
*One parent told me that when she took her adult son to a hospital emergency room, he was not separated from others waiting there even though he was hearing voices and psychotic. He became enraged when another person in the crowded waiting room mistakenly picked up his soda. He attacked and broke that person’s arm. He ended up in jail on felony charges.
*Another parent recalled how her son had been expelled and banned from receiving services at a local mental health clinic after he wrote a profane and threatening letter to his case manager. That case worker’s boss called the police and, again, the person with mental illness was taken to jail and charged.
*The worst story came from a mother who gave me a lengthy, typewritten report about her attempts to help her adult son. At one point, this mother was told to practice “tough love” so she kicked her son out of her house when he refused to take his anti-psychotic medications. He began self-medicating with alcohol and marijuana. When her son showed-up at her house unannounced and psychotic, the police were called. Her son was arrested for trespassing and when he reached the jail, he began screaming about how invisible men were crushing his head. Officers put him in a holding cell where he attempted suicide. The correctional officers got to him in time, but a melee broke out and the prisoner bit one of the officers. He was charged with felony assault. At his court hearing, there was no mention of his mental condition. A judge sentenced him to between one year and three years in a state prison where he was brutalized by prison gangs and got into more trouble. This time, he grabbed a psychologist’s neck during a therapy session. That got him an extra four year sentence. Because of his untreated mental disorder, prison officials were reluctant to parole him early. This meant, he served his entire sentence and when he was done, he was turned loose with no re-entry plan, no medication, and no parole officer. His mother took him home and, shortly thereafter, he attacked her with a knife. Although she refused to file charges against her son, a prosecutor filed them anyway and – you guessed it – he ended up back in prison.
All three of these incidents should have been avoided. In the first case, simply keeping a psychotic person away from other people in a hospital waiting room would have solved the problem. I understand why a case manager would be alarmed if they received a threatening letter, which is what happened in the second incident. But if a person with mental problems is banned from treatment, how can he/she get better? The third incident is the most tragic because it is all too common. A person who is ill gets in trouble for a minor crime and then becomes entangled for years in the criminal justice system. That case could have ended differently if there had been effective Crisis Intervention Team training and jail diversion programs in place, as well as, a mental health court. The prisoner’s mother told me that her son had become a “victim of our broken mental health system.”
She was right.
These stories are especially troubling because they happened in New York, which always scores high when its mental health services are graded. The director of New York’s Office of Mental Health, Michael F. Hogan, was chair of the President’s New Freedom Commission on Mental Health. Historically, the state spends more on mental health care for its citizens than any other state. Only the District of Columbia spends more per capita.
Which makes me wonder: if these problems are happening in New York, what’s going on in the rest of our country?
Another observation that I’ve made whenever I give a speech is that there are parents in the audience who have and are making a difference in their communities. In Auburn, one such couple is Terri and Bart Wasilenko. After their son, Chris, became ill, Terri and Bart started a NAMI chapter. That’s right, the two of them started a NAMI chapter. Today, Chris is a trainer and speaker in NAMI’s In Our Own Voice program.
The parents who tell me about the problems that they’ve faced trying to help their loved ones are a constant reminder to me about how much we still have to do to fix our mental health system.
Terri and Bart remind me that individuals can and do make a difference when they commit themselves to bringing about improvements.
They give me hope that someday, I will hear more success stories than horrible tales when I travel to give a lecture.
About the author:
Thanks for the “shout-out”, but the truth about mental illness is that the public DOESN’T know the truth. They only become aware of the horror stories when something tragic happens or when a high profile advocate speaks out! Appropriate treatment is one that encompasses an accurate diagnosis, effective treatment modalities, successful community reintegration, and support for families that struggle with their mentally ill loved one…ie. NAMI.
My son was misdiagnosed and labeled with schizo-affective disorder in his late teens. Consequently, for years he was given medication that was beginning to bring on the signs of TARDIVE DYSKINESIA This is a neurological disorder that frequently appears after long-term or high dose usage of anti psychotic drugs. My son was beginning to exhibit signs of tremors in his early 20’s. It was difficult for him to keep his hands steady or hold things. He told me on several occasions that he was concerned and often embarrassed when in public. As a dad, I though it was the “lesser of two evils”…tremors or psychosis. I just listened and empathized with my son.
To make a long story short, it wasn’t until his psychiatrist left the area that we began yet ANOTHER search for someone to treat our son. We were blessed to find a psychiatrist who actually took the time to sit down and LISTEN to my son and get to know him as a PERSON and NOT an ILLNESS!!!! She found that he was NOT schizophrenic, but suffered from a different psychiatric disorder. She immediately changed the medication that he was taking. What a difference that made in all of our lives!
The bottom line is to take the time to look around for a mental health care provider who will listen to the family members and most importantly TAKE THE TIME to develop a professional relationship with the person being treated. When a doctor sits down with your loved one just long enough to write another script for medication, then it’s time to start looking for another provider! It is important for the consumer and health care provider to “click” and for the consumer to feel that he/she has a responsible role in his/her own treatment! That is key to the consumer staying on his meds. and understanding his illness.
My son just completed another successful training session in the NAMI NYS “In Our Own Voice” Program. Today he trains others with mental illnesses to present this signature NAMI program to the public. It’s goal is to educate, promote discussion and erase stigma for those who are afflicted with a mental illness. My son is an example that with an accurate diagnosis, appropriate treatment, and support, RECOVERY IS POSSIBLE!!
There is HOPE today that I didn’t have at the onset of my loved one’s illness. Where once it was as if I was looking at the darkness of a long tunnel from the outside. Today having the knowledge and courage to start walking through that tunnel, I can see a little light that helps to guide me though those dark days!
I am so happy for you and your son. it is good to know there are some happy endings.