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I have 'spearheaded' the movement for a safe and lasting recovery for my son. I have learned specialized techniques to address behavior from an unstabilized individual who suffers from a severe brain disorder in order to keep him home until more in-depth treatment could be found. I obtained information from organizations as well as informed myself through reading books and newsletters. It takes work, but it can be done. It also takes a team effort from our family and the right professionals. And everytime I see my son smile, give love to his dog and other family members, or just jokes around, I am rewarded daily! We have our son back.

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Wednesday, January 30, 2013

In response to Dr. Christopher Gordon’s letter ‘Invitation to a Dialogue: Forcing Treatment’

In response to Dr. Christopher Gordon’s letter ‘Invitation to a Dialogue: Forcing Treatment’ (http://www.nytimes.com/2013/01/30/opinion/invitation-to-a-dialogue-forcing-treatment.html?_r=0) I must agree with his point, “But for most patients experiencing psychotic states, mandated treatment may create more problems than it solves.” However, when assisted outpatient treatment laws are written well, they protect those who would not qualify for forced treatment while providing needed treatment for those who are not able to get treatment on their own due to lack of awareness of their illness. As to the exact percentage of people who would qualify for assisted treatment I am not convinced that the numbers that are currently reported accurately reflect all those who are on the streets, in jail, in-and-out of care, or in the morgue. Dr. Gordon also points out that, “For many medical conditions, better outcomes occur when patients share in treatment design and disease management.” Again, I agree with this statement once an afflicted individual has had an opportunity to get treatment and has been able to reduce or eliminate psychotic episodes to the point they are able to contribute. I use my own son as an example. Being treatment resistant, there was no reasoning with him about anything let alone treatment. We were the crazy ones. It was only when he had been compliant, for a period of time, to a medication that worked for him were we able to involve him in treatment decisions. Because only then was he able to reason. Assisted Treatment Laws need to be well written so that those who do not need medication will not be forced to take it. Improvements need to be made in screening and early interventions need to be in place and available to parents for the best possible outcome for their afflicted loved one and themselves. Parents need to be given a voice in the intervention and treatment process. To say that, “Mandated treatment is a blunt instrument that may drive more people away from seeking care than it compels into care.” is to say that we need to have the best AOT laws so that everyone has a chance to get the treatment they need. With or without assistance. The cycle of homelessness, jail, and brief hospitalizations is not conducive to a successful treatment plan for anyone. It is, however, an excellent way to die.

Monday, January 14, 2013

Defining 'Care' When We're Talking About a Severe Brain Disorder

'Care' in this context means more than reaching out and being friends, or any of the programs that are already out there and available for those who can find them and take an active part in their treatment and recovery. It's more than what an HMO can do, even though there is a lot of room for improvement in that area as well! 

What I proposed in my petition (links given below) is a three point need list that will help families get care for their loved ones who suffer from a severe brain disorder with lack of insight and other severe symptoms such as (but not limited to) command hallucinations.

 We're talking about a small percentage of those who suffer from schizophrenia for example, who are so impacted by their brain disorder it controls what they think and what they do. They do not have any insight to their condition and will not seek treatment on their own. Their behavior, if their disorder goes untreated, will break laws, break family bonds, and break their brain.

In these cases, time is brain. With each psychotic episode they lose the brain cells they will need in order to have a recovery. This is why it's so important that early intervention and compliance to the right treatment is so very important!

For those who can get help for themselves, this does not apply to. But as I do not want to see any path to recovery blocked, because I believe that everyone has a right to recover, we need to provide the added support for those who are most severely impacted. Right now, on a whole, we don't.

 This does include but is not limited to AOTs. When written properly, they safe guard those who don't need it from abuse and allows for a 'fast track' for treatment for those who need it the most.

 Life by illness is not a good life. It is filled with traumatic cycles of homelessness, abuse, jail, and being alone. Because their choices are made by the disorder, not by a clear mind able to make decisions freely.

I know. I've seen the changes in my son. We lost him to his disorder. He could not show love, he could not listen to our words of love. All he could hear were the command voices. All he felt was fear and confusion. All he did was destructive to people and property. Because all he was, was the illness. We didn't have him any more.

 Once we found the right treatment and he remained compliant to it we slowly got our son back! He now feels love. Not just for others but for himself. And because of his self love he makes better choices. HE make his choices. NOT THE DISORDER!

 Our family spent the better part of almost two decades finding and getting the right intervention, treatment, and recovery. I strongly believe that EVERYONE HAS A RIGHT TO A RECOVERY!!! Everyone has a right to make their life choices as free from their illness as possible.

The points on this petition will help families do just that. Assert their loved one's right to recover.


 https://petitions.whitehouse.gov/petition/help-families-address-some-critical-failures-government-assistance-services/B07zl2hm http://signon.org/sign/how-many-of-us-know-but.fb23?source=c.fb&r_by=6303597 We also need to to personally make an appointment with their representative to see him or her in their home office, personally write the President, personally write Biden. Believe it or not, many of those personal letters still reach them and the old theory that one letter counts for 100 petition signors locally and 10,000 nationally, is still true. So please, sign, share, and write! Families shouldn't have to give up on their afflicted loved one. We need to help them, today! Thank you for your continued support!

Thursday, January 10, 2013

HOW MANY OF US KNOW BUT IGNORE AND TURN AWAY? Petition site

http://wh.gov/Pndl Here's a shorter link for the We the People petition site for those who use twitter! Easier to sign the petition!

Wednesday, January 9, 2013

HOW MANY OF US KNOW BUT IGNORE AND TURN AWAY?

We have the petition on another site that requires less signatures! Same petition so please sign and pass along! http://signon.org/sign/how-many-of-us-know-but.fb23?source=c.fb&r_by=6303597

HOW MANY OF US KNOW BUT IGNORE AND TURN AWAY?

How many of us have known a family like Adam Lanza’s, a James Holmes, or others that commit a preventable tragedy? How many of us have witnessed or personally experienced the lonely desperation that devours the family who try in vain to get the needed treatment and support for their afflicted loved one? How many of us know the drama and trauma that comes with an untreated severe brain disorder with anosognoia and psychosis? How the untreated disorder drains every family resource; usually leaving them broken, helpless, and wondering how this could have happened? How many of us know but ignore and turn away? Anosognosia is a brain malfunction in the frontal lobe. It prevents an individual from having insight to their condition so they will not seek treatment on their own. It is not denial. Anosognosia allows the brain disorder to control a person’s thoughts and behavior. Anosognosia cannot be talked, prayed, or loved away it must be treated.. After reading Liza Long’s viral blog, “I Am Adam Lanza’s Mother,” now entitled  “Thinking the Unthinkable,” memories of raising my own son sent my pulse racing and my blood pressure soaring. Even though it’s been over a decade since we faced our own trauma and drama. I can’t believe that families like ours still cannot secure treatment compliance and support services for the ones they love, fear, but still care for! Is it lack of reliable information? Is it stigma? Is it the diverted funding that prevents the implementation and proper enforcement of current laws or the making of needed new ones? Is it a lack of hospital beds? Is it lack of public awareness or lack of professional accountability that allows this gross neglect of those most seriously impacted to continue? We must stop ignoring the issues! When time is brain, the right early intervention, treatment compliance, and support services can save brain cells that are needed for a recovery. Our family is living proof! Our son has been relapse free for ten years and is enjoying a lasting recovery! As Alexandra Petri points out in her Washington Post blog article, families desperately need assistance in providing early intervention, proper and timely treatment compliance, and sustained support for themselves and their loved ones who suffer from severe neurological brain disorders with anosognosia. ( http://www.washingtonpost.com/blogs/compost/wp/2012/12/18/after-i-am-adam-lanzas-mother/ ) I believe that we must: 1: Implement, fully fund, and enforce a National Assisted Outpatient Treatment Guideline for each state to follow, creating strict psychiatric and neurological criteria for those who would qualify and to ensure compliance with prescribed treatment. http:/mentalillnesspolicyorg.blogspot.com/2012/03/samhsa-vote-assisted-outpatient.html 2: Increase the number of psychiatric beds.  http://blog.al.comspotnews2012/07psychiatric_hospital_beds_dwin.html 3: Provide sustained support services for families and those they care for. Assist families in the management of unwanted and potential criminal behavior which will help to keep their loved ones off the streets and out of the correctional system. http://www.petoskeynews.com/news/featured/pnr-mentally-ill-and-in-jail-why-incarceration-may-not-always-reduce-crime-20121227,0,6322748.story Please click on the link provided and add your signature. Now is the time for action! Before it’s too late, again! https://petitions.whitehouse.gov/petition/help-families-address-some-critical-failures-government-assistance-services/B07zl2hm

Give Them Something to Hold On To!

This was an article I wrote for Step-Up-On-Second's Summer 2008 newsletter about our journey to be able to give James motivation (something to hold on to) in order for him to stay compliant to treatment.

It explains a little about what we did as a family to facilitate his changing needs while staying safe.

I will be happy to share it on request.

I have also written and had publish a couple of letters to the editor for different newspapers in support of Laura's Law here in California.

Laura's Law is an assisted treatment law that would enable those who suffer from a severe mental illness to get Treatment BEFORE Tragedy!

BEFORE jail, homelessness, or violence!

Please write to your local representatives, your senators, your Board of Directors and the Governor of California. Tell them you want to see Laura's Law fully implemented in the state!

If you live in another state and want your state to have Assisted Outpatient Treatment laws like Laura's Law, click on the link below for the Treatment Advocacy Center and find out who you need to contact.

Early treatment is what gives us hope for a recovery.


HERE ARE THE TWO FIST STEPS WE DID

The first, was as early an intervention as possible.

The second, was putting together the right treatment team for my son.

INTERVENTION

Daniel's Place
www.stepuponsecond.org/services/help.html
1619 Santa Monica Blvd.
Santa Monica, CA. 90404
(310) 392-5855
First stop to getting important information at the beginning of the onset of a severe mental illness. They also serve those with autism.

Lost Hills Sheriff's Department who would send out officers when we needed back-up and to the At Risk program that tried to help our son.

Barry J. Nidoff Juvenile Hall
Sylmar, CA 91342

Some of these people have moved on to other locations but we are very grateful they were here when we needed them the most.

1) His Honor Commissioner Gold who understood what we were facing with James and did all in his power to support us in being successful with his prognosis. He ordered that compliance to treatment be part of James' probation because AB1421, Laura's Law, was not available to us.

2) Public Defender Evan A. Kitahara was what we needed to get James treatment. I would recommend this man to anyone. He is one who spear headed all the conections with the Public Mental Health Attorney for James while he was in Juvenille Hall. Mr. Kitahara understood our situation and he was a big part in our success.

3) Public Mental Health Attorney Lisa Greer. She was responsible for getting James what we needed from the Juvenile Hall school that would qualify him for Emotionally Disturbed status that would allow us to pursue placement through our school system and the Department of Mental Health in an out-of-state lock down facility. She also had James sign over his educational rights to me which was critical in the last years when he wanted to stop the program he was in out-of-state. It also gave me power in the Individual Education Plan meetings (IEP) once James was of legal age. She spent all day in one meeting with us to insure we had the right verbage so that James would have what he needed in our school district. She did so while missing an important meeting for her own special needs child. A great woman.

4) Jerrald. F. Pedrotti - great help in connecting with Even, Lisa, and James when he was in Juvenile Hall. A great advocate for treatment and a great mentor to those lucky enough to get his attention and help.

5) The various probation officers that would listen to our family needs and support treatment.

Child Advocate (name forthcoming) to help us navigate through some tough meetings with the school district to get a lock-down facility approved by the district to meet James' needs at that time.

Las Virgenes School District

Mental Health Attorney (name forthcoming) to get probate conservatorship so we control James' SSI monies until the time when he is ready to take control of his finances.

Devereux Residental Treatment Facility
http://www.devereux.org/
League City, Texas

TREATMENT TEAM

Tracy Rosberg, Ph.D. psychologist
23401 Park Sorrento, Suite 200B
(818) 591-3000
Either Tracy or a member of her team can help with a wide range of disorders including Autism. Tracy helped us with my son getting on a Clozapin trail and she recomended UCLA. She also personalizes her therapy session to fit the needs of the person. She would take walks with my son because he couldn't sit in a room for a long peroid of time.


Dr. Steve Marder at the UCLA Schizophrenia Clinic

Outpatient Schizophrenia Program
http://www.psychiatry.ucla.edu/
Information and referral - (310) 825-9989
or (800) 825-9989
(310) -268-3647 to schedule an appointment.

Sophie at ICPS - (951) 354-6804
ICPS (Independent Consultant Pharmacist Services) - monitors blood test for white blood cell count and more. A great help to both the doctors and the families who have a member on a Clozapine trail.

Ride-On:
http://www.rideon.org/
e-mail: info@rideon..org
10860 Topanga Canyon Blvd.
Chatsworth, CA. 91311
(818) 700-2971
Horse therapy with psychoanalyst. This was a great help to James regaining some of his self-confidence and much more.
They service all types of mental and physical disorders.

Victory Wellness Center- Day Program and much more
14411 Vanowen St.
Van Nuys, CA. 91405
(818) 989-7475

ABA (Applied Behavior Analyisis) - Behavior modification techniques that allowed us to develop personalized programs to keep James compliant to treatment, extinguish unwanted behavior (even when he wasn't yet stable with the right treatment), increase wanted behavior, self-esteem, and over time trust. I learned the basics from an Autism Patnership trainer with on the job training in a Community Based Instuction High School setting but there are many who offer this program. It is designed for those with autism but I found that once I deveolped a plan around the needs of my son, it was still the most effective behavior modification program for when he was not able to reason out problems. Behavior is behavior, in my humble opinion.

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