Winter Bike Ride
Hope you have a good weekend everybody!
Your Custom Text Here
Photo credit: Marisa Farnsworth
Winter Bike Ride
Hope you have a good weekend everybody!
I have a question for those who've had experience with public mental health systems in California.
I lived in California for 40 years and left seven years ago to move to Florida because we found a residential program for our son, Bret, that looked better than anything I saw in California. It's a beautiful campus on a lovely lake in an area that's close to other lakes, springs, Disney, and the beach. It didn't work out for my son and he left in August 2012. Now we want to move back to California but the county where we lived and where I worked for Contra Costa Mental Health has been devastated. It wouldn't be smart to move back to a worse situation.
My question is this: Is there any county that has a decent, effective residential program, either public or private, that anyone can recommend? I know about the John Henry Foundation in Santa Anna but we aren't interested in living in Orange County and we want to be near to Bret so we can visit often.
I'd appreciate any information that anyone can share about a facility in California that's helped your adult child; about a place that offers a real program with psychiatric care. Our son's on meds and is very savvy. He just needs guidance at night and lots to keep him busy.
Please leave your suggestions for Gloria in the comment section below.
See Gloria's post, November 1, 2016: No Respite
Bret
This afternoon I texted a friend to come over and pick up a bunch of my son's nice hand-me-down clothes for her son. This is a woman we used to carpool to school with. She's my sister's best friend and knows that we've had many difficult years, and that this year has been especially difficult.
I don't know how much my sister has told her, but it's pretty well known that my son had to leave school (where her daughters attend) and is in a treatment facility (for bipolar, anxiety and substance abuse).
Anyway, she blew in and immediately began talking non-stop about where her daughter had been accepted to college, where all the people in their class were going to college, how well her next two children were doing, how her daughter should marry so and so, and how so and so's kid didn't get into Stanford even though he made a 35 on his ACT and had straight A's. Blah Blah Blah. She seemed nervous and uncomfortable.
There we were, standing over a table of my son's clothes, and she never once asked me about him. It was if he's dead or worse, never existed. This woman knows me too well to have not said something. And then to go on and on about all the other kids — it was really bizarre.
I just keep telling myself that my son has dealt with more challenges than all these kids put together. So I'm gonna brag about my son, Thomas (he has a name). He's doing great on Zoloft. He's passed four of his five classes this semester. He hugged me over and over again during Christmas. He's more aware of his anxiety and is expressing his awareness of it more than ever before. He's talking to us about his substance use. He's participating in his medical treatment. He's as smart as any of those other kids. He's beautiful and loved and mine.
Thanks, ya'll.
Photo credit: Anthony19318/Flickr
I want to thank all my friends, and kind people whom I don't know, for your messages of congratulations in recent days regarding the appearance of NO ONE CARES ABOUT CRAZY PEOPLE on end-of-year book lists in newspapers and magazines.
To the extent that NO ONE CARES ABOUT CRAZY PEOPLE has given solace to afflicted and bereaved families, I am glad.
To the extent that it has encouraged direly needed discussion and education as to the unique and hazily understood nature of serious mental illness - a genetically inherited brain disease that as of now can be stabilized yet not cured - to that extent, I can take comfort in being of some small use.
To the extent that it has shown a light into the mangled, dysfunctional, shamefully mis-managed or unmanaged universe of mental health care (especially as it intertwines with the criminal-justice system, public policy and law enforcement), I can feel that, in the twilight of a long checkered writerly life, I have finally lived up to that romantic journalist's mandate to "comfort the afflicted and afflict the comfortable."
And yet:
All of this (to invoke a goofy profound phrase I heard years ago and have kept in my heart ever since) is duck feathers in the wind.
I neither expect nor require any further external accolades for NO ONE CARES ABOUT CRAZY PEOPLE.
No more lists, no awards - that will all be fine with me, my wife, Honoree, and my son, Dean. To desire or congratulate myself over any of these transient things, given what the book is about, would be unspeakably obscene.
NO ONE CARES ABOUT CRAZY PEOPLE is ultimately a consecration of my family - especially of our lost son and brother, Kevin, whose absence still wounds us every day, and whose presence still fills my nightly dreams with his heartbreaking beauty.
And so this book is for you, Kevin. It's the nearest I can come to making you permanent. Everything else is lagniappe.
Dean and Kevin
Photo credit: Marisa Farnsworth
Winter sunset...
Hope you have a good weekend everybody!
Ty
Michigan has passed Kevin's Law. The first time it passed was in 2004. Then it was updated, by lowering requirements, in 2017. Kevin's Law, basically, allows the court to order outpatient treatment. Court orders can include a mandatory long acting antipsychotic shot, usually once a month, for a seriously mentally ill person — especially for those who lack insight into their own illnesses (anosognosia).
Unfortunately if you walk into most county probate court offices, the staff won’t know about Kevin’s Law. They’ll tell you to call county mental health, hire a lawyer or just kick you out. This was my experience today at Muskegon County Probate Court. I asked “May I please have the forms to fill out for Kevin's Law.”
The clerks and a judge began to communicate lots of incorrect information. The judge was intimidating. His sheriff’s deputy, was standing next to him as he yelled, “Get an attorney.”
I said, “I don't need an attorney.”
He said, “You have to go to Healthwest, County Mental Health.”
I said, “Sorry, the law doesn’t say that. A parent, neighbor, friend, teacher, doctor, social worker, sister, brother, uncle, or anyone, can file Kevin's Law. My husband and I have guardianship and the record of an independent forensic psychiatric exam.”
The reality is, it’s the responsible thing for a parent and guardian to do. Apparently, they didn’t understand that. They shooed me away. The experience shook me up. Blame lack of education and training and Michigan's policy of underfunding important initiatives. What’s the point of passing a law that is improperly funded?
Our sweet 19-year-old bi-racial son, Tyler, is a graphic artist and a musical genius. He was born drug addicted and adopted through the state of Michigan as a medically fragile baby. He has autism, bipolar disorder with psychosis, ADHD, and has suffered six traumatic brain injuries.
The state knows Ty well. We were promised a medical subsidy whereby the state would help us with his medical and psychiatric care if it was an expense that our insurance or Medicaid didn’t cover. When he needed extra treatment, we were denied. When the time came that he needed a supervised group home, the state refused. Michigan Adoption Subsidy denied us all help. County Mental Health (CMH) failed to recognize our guardianship and failed to file for group home placement and residential treatment.
We found out mental illness with autism is considered a co-morbid disease. The state is required, by law, to help. We also found out all denials were required to be done in writing not orally. CMH did not comply with this requirement.
We requested CMH to file Kevin's Law, through the Muskegon County probate court on Feb. 17th, 2017. CMH said, “We don’t know how to file Kevin's Law. We don’t know what it is.”
Our son was arrested and incarcerated while in psychosis, Feb. 18th, 2017. He was arrested for a home invasion as he was sleeping on our neighbor’s sofa. Our neighbor almost shot him but, in a split second, recognized him as the kid next door. This is the second time our son was almost shot.
Tyler had an ER doctor diagnose him with acute psychosis. He’d tried to hang himself. He had intrusive thoughts. He was delusional. We were in the ER, doctors’ offices and psychiatrists’ offices, 15 times for emergencies. CMH canceled three psychiatric appointments. CMH workers tried to access crisis care with a doctor but the psychiatrist had quit or taken a leave of absence. CMH prescribing psychiatrists were not accessible by phone when medications interacted dangerously. Ty was hospitalized only twice, for short term treatment.
The first time he was admitted, Ty was catatonic. He hadn’t eaten in almost two weeks. He was admitted to Pine Rest for a week. The second time he was admitted to Saginaw White Pines for a week. No one called us from Saginaw White Pines to say he’d be released even though HIPPA releases were signed. Our son was still in psychosis, still delusional. He was almost 4 hours from home and released without a phone call.
Our son has been found NGRI (not guilty by reason of insanity) by a forensic psychiatrist. He’s still awaiting trial. His trial's been postponed for almost a year. Speedy trials are not a reality for the mentally ill. Michigan has a rule that, after 15 months of incarceration, they can release NGRI inmates without ever providing treatment at the forensic center.
Our 17-year-old son, Ty, was in psychosis and incarcerated in February 2017 with adult inmates and assaulted. Today, I went to probate court, again, to request assisted outpatient services. Please, state of Michigan Governor Snyder, and Lt. Calley, train your judges, mental health workers, lawyers, clerks, politicians, and doctors about Kevin’s Law.
We dream of the day our home is filled with Ty’s piano music again.
Note: Kimberlee West and her family have been informed that Ty has to undergo a second forensic psychiatric exam by the state — the first exam was "incomplete." It could take another 60 days for Ty to be examined. Ty's trial date had been set for January 23, 24, and 25, 2018. It's been postponed. Again.
Read more of Ty's story in the archives in the right hand column.
November 15, 2017: Hope One Day We'll Have Real Choices by Kimberlee West
August 22, 2017: Walk a Mile in Our Shoes by Kimberlee West
Ty and his friends
This is rough...but it's my heart…
I got angry at a woman, today. I don't know her, and she doesn’t even know I'm alive. And yet, her very existence, well, more to the point, the existence of the bumpersticker on her car, filled me with a stupid, unreasonable rage.
That f@cking bumpersticker.
You know the one. It’s festooned with the same innocuous slogan that is plastered on every minivan in America. “My kid is an honor roll student at YourTownHere Middle School.” Really? Who cares? Who really f@cking cares?
My daughter is an inmate at Clifton T. Perkins psychiatric hospital in Jessup, Maryland. There’s no bumpersticker for that.
So, good luck to you, lady, and your honor roll student. Believe me, that sh@t changes without warning. My daughter was an honor roll student, a world-class musician, an actress, a funny, well-loved kid with a beautiful smile and laughing eyes. Now she has schizophrenia.
Or is it bipolar? Or borderline? Or schizo-effective disorder? Or none of the above? The fact that she was diagnosed — or misdiagnosed — under virtually every category in the DSM-V (or is it IV?) is part of the tragedy that has tormented my daughter and my family since she was a child. Because after a being let down and abandoned by medical systems on both sides of the Atlantic, my beautiful daughter could fight no longer and succumbed to the demons that have haunted her for nearly all of her short life.
They raged through her body and soul, writhing like snakes beneath her skin, robbing her of the ability to think, go to school, work or even show the most basic of human compassion and emotion. Her life became a wasteland of days spent searching for and then wallowing in whatever she could find to self-medicate her pain and fear away. The demons had won, it seemed.
Despite our best and constant efforts, my good wife and myself, weary from the fear-filled days and sleepless nights felt like all was lost. At least, we would often console ourselves, things couldn't get any worse.
Until they did.
Ray
Photo credit: Jim Moon
Well, hello. Somebody said it's a new year.
Hope you have a good weekend everybody!
My son, James, is 34. I'm so proud of the man he's become, and grateful to everyone who's helped him get where he is today. Mostly though, I'm grateful for him.
You see, although I'd take away his illness if I could, his journey's made me a better person. Although I'd eliminate all the pain he's walked through, his pain's enabled me to be more compassionate. Although I'd give him back the life he knew before his symptoms took it all away, I'm grateful each day that he is alive and able to give and receive love.
This picture was taken in January 2017. James looks the same except that he's thinner now. There were so many times along the way that I never, in my wildest dreams, thought he could enjoy such a wonderful quality of life. Don't get me wrong, he can't hold a full time job and will never be totally independent, but he's accomplished so much more than we dared to hope for.
James
A wise man once told me that what I needed to do was give my son something he didn't want to loose. This was what I built everything on. It's a solid foundation. Of course, as you well know, doing it takes a village!
Just a little back story because I understand how hopeless and overwhelming caregiving for our loved ones can be — the pain, the endless stress, the blocked paths to treatment, the grief, and the feeling of isolation. For my son, his journey started before his birth, really. I was high risk due to having placenta previa and he was in fetal distress during labor. They couldn't find a vein for an IV so I could have a C-section so other methods had to be used. James was blue from a knot in the umbilical cord that was wrapped around his neck.
When James was in second grade, he was diagnosed with ADHD and we started behavior modifications along with medication. He continued with behavior modifications until he became so ill that they didn't work well.
James was always a gifted athlete. In his freshman year of high school, his coaches told him to look for college scholarships in basketball, baseball, and football. But, by age 15, his symptoms were severe and he was put in a locked down facility out of state because he was still a minor. I appealed to the court to release him into my care so I could get him treatment. He needed treatment, not punishment, and it's in the right treatment that we found our hope. That's why I do what I'm able to help more find their treatment in time.
My son's been and continues to be one of my greatest blessings and the best teacher I've ever had. I'm honored to know him and to have the privilege of being his mom. At long last, he's at peace with his life. He's on the other side of his horrific journey. His kindness, gentleness, and his never giving up have lead him here. He's able to enjoy the present and let go of what once was.