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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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Monday, December 30, 2013

We're Moving to a New Blog SIte!

We found a new home! Please come and visit us at our new blog location! http://familyfabos.wordpress.com/

Tuesday, December 17, 2013

WHAT ARE YOUR FAMILY'S NUMBERS?

My son suffers from bioneurological brain disorders. Without the right treatment and support that he needs, his medical condition prevents him from realizing that he has a serious illness. The untreated symptoms of his brain disorders controlled his thoughts and his actions. His untreated symptoms also controlled our lives.
My son has schizophrenia, anosognosia (in laymen’s terms "lack of insight" or "lack of awareness" that he is ill), a history of Capgras Syndrome, a history of command hallucinations, and PTSD.
So what does all this translate into? A preventable tragedy that was almost impossible preventing.
What are our numbers? 1:6. That’s our family’s conservative ratio.
Now what does this ratio mean?
It means that my son represents the one (1) who is suffering from his illnesses. The six (6) are the other people in our family who are directly connected to him.
Our lives have been significantly effected by his untreated or treatment resistant medical illness through the constant emotional stress of the daily trauma and drama of the severe symptoms including psychosis and crisis evaluation teams.
Having situational mental illness like depression or PTSD due to the overwhelming hopelessness and isolation of caring for someone with such a severe brain disorder when they are not being properly treated and their symptoms are not under control.
The loss of wages from jobs we have had to give up or lost due to having to care for our loved one. Having to follow one crisis after another perhaps having to move from one place to another due to stigma.
Missed chances of advancement at work or taking lower paying positions in order to be available to the needs of our loved one.
The overwhelming family stress that can lead to divorce and further financial and mental decline of the entire family.
It means that my son’s illness affects more than just him. It also, greatly impacted his school system, our local sheriff’s department, the juvenile courts, our relatives who helped to provide financial aid to get him on the ‘fast track’ to treatment and the needed legal procedures we had to secure.
His illness dictated his and our lives.
How we spent our time, our money, our emotional resources. There was nothing left over for our needs. We were all consumed trying to save him!
But we are among the lucky ones. In spite of the odds against us, our family stuck together and did what we needed to do to secure his compliance to the right treatment for him.
What was the cost for his intervention and treatment? Here is a start at some of our other numbers:
Lost wages: I quit my job at DreamWorks and later at Disney on a union job that paid me $70,000 a year with full benefits. I was the only one who could care for my son.
Mental Health: I didn’t have any. I lived in constant high stress of being attacked and threatened by my son along with the stress from the fear of losing him. The stress of not being able to find timely treatment for him. I paid not only with money, but with my mental and physical health.
Probate Conservatorship: $6,000.
One month in a dual-diagnosis facility before his SSI started up: $6,000.
Qualified therapist who didn’t take insurance: $160.00 per hour once a week.
Equine therapy which worked the best from all the therapies we tried: $160.00 per session per week.
‘Fast Track’, by passing waiting list for medical recipients‎ and getting into an outpatient treatment facility that held the most promising form of treatment for him and they didn’t accept our insurance: $250.00 per appointment for two years until they finally accepted his Medical.
Blood monitor company: $150.00 per month. We’re going on our seventh year now.
Licensed nutritionalist: $120.00 per visit.
Independent blood test for mercury and other toxins: $180.00.
The list just go on and on. He was in therapy since he was in second grade to work with the behavior we were trying to deal with daily.
We spent and loss thousands of dollars. We have little retirement saved and my husband and I are 57.
It was worth every penny and every sacrifice. When we look and enjoy our son today, there is no price we can put on his life or on how close we all are now.
The problem is, why should we have to pay such a high price for medical treatment for our son?
What about the families who do not have the resources we did to secure early intervention and his compliance to treatment?
What happens to them? What are their numbers? How much worth can you give to a life?
What if my son decides to be noncompliant in the future? What would our fate be then?
All this effected and still concerns my whole family.
My son’s illness isn’t just his illness. It’s a 1:6 ratio in our family. I’m not counting my brother’s suicide at 15 or my mother’s issues and how they impacted me and my family.
What are your numbers?
There are no statistics that include our numbers in their studies. We are the ones they don’t know about. They don’t talk about. We are more invisible than the ones we advocate for.
It’s up to us to unify and speak out in one voice for what we need. For our rights to be able to get the needed treatment for our loved ones medical condition.
It’s their illness but It effects us all.

Saturday, November 30, 2013

Celebrating His Big 30!

This year, Thanksgiving fell on my son's 30th Birthday and he has never been better or more happy! He enjoyed a wonderful holiday dinner with family at his Aunt Sue's and then opened birthday cards with his nephew Sean Michael and his dog helping and sharing in the joy! Tonight, he gets to have our family traditional dinner of choice. Three days of pie, cake, turkey, laughs, and full stomaches! We are truly blessed and joyful!

Monday, August 5, 2013

"Caregivers for mentally ill (severe brain disorders) push for support"

I found this post merited a place on my blog because it touches on the needs of a family trying to provide the needed care for a loved one who suffers from a severe brain disorder. It is an overwhelming task with no breaks and little appropriate support. We suffer from trauma and battle fatigue after year upon year of struggle, worry, and financial distress. We need help to help care for our loved ones who suffer from a severe medical condition. Other brain disorders are provided support. Why not our families? "Caregivers for mentally ill push for support Government should finance health care workers to come into the home, Sudbury advocate says CBC News Posted: Aug 1, 2013 9:41 AM ET Last Updated: Aug 1, 2013 11:36 AM ET A Sudbury woman caring for a son with schizophrenia says new guidelines to support care-givers of the mentally ill may help. Some of the guidelines recently proposed by the Mental Health Commission of Canada suggest changes to privacy laws to allow caregivers more access to confidential records. Sudbury's Margaret Jones - whose son was diagnosed with schizophrenia as a young adult - said getting access to his treatment information wasn't an issue for her. But there was practically no other support for her almost 30 years ago. "I was taking sleeping pills because I couldn't sleep," she said. "I was thin, I wasn't eating. It was really hard for me to concentrate on anything other than keeping him out of trouble and keeping him safe." Jones said there are more community programs now, but said the government should finance health care workers to come into the home. Pushing for change. Meanwhile, the CEO of the Sudbury/Manitoulin chapter of the Canadian Mental Health Association said the new guidelines are a beginning. Marion Quigley said care-givers can be more involved in the welfare of a mentally ill person by removing confidentiality. "The legislation protects the individual's right to privacy and so this report talks about some of those changes that people are asking for," she said. If the changes to privacy laws to allow caregivers more access to confidential records comes to fruition, Quigley said that would enable them to know how to best care for their relative. She added the CMHA will be part of a campaign in the coming weeks to push for change. "I'm not very optimistic, I think that legislative change takes a long time, however, I am optimistic that we can work together and set up strategies in the meantime." The CMHA will work on providing caregivers with more support in the meantime, Quigley noted."

Sunday, June 23, 2013

What works for you? When our son's symptoms are in the forefront....

Ever since my grandson had a fall which resulted in a minor concussion with vomiting, we noticed our son's symptoms have started to return. As he was very stressed over the wellfare of his most beloved nephew. His hygiene has been neglected, he's irritable, his attention has dropped dramatically, and he's been isolating himself. Plus, his smoking has increased. So, my husband (who is the most acceptable to our son when he's like this) approached him about laying out his medication for the week. We also had suspect before this, that he hasn't been taking his full dose of Clozapine. We don't want to challenge him by confronting him about it, nor do we want to cause him a sense of failure by overseeing or taking back the daily medication responsibility. So my husband just let our son sit at the table on his own and put his medication in each container for each day of the week. Then he went over and checked to be sure everything was in one of the containers (as the contents for each looked the same) and gave him a pat on the back and said, 'Well done!' We've since seen some improvements in his symptoms, but we're keeping the tone of the house very low stress right now (we used some suggestions from the Sidran Foundation) and some issues that we would bring to his attention to change (like not completing his chores) we're letting go. Our main goal is for him to have his symptoms come back down before we get back on track with the other goals and issues. We give him a lot of positive feedback when he showers and when he does do something around the house. It's not about the end product, it's about the process and any effort on his part right now. We understand it's hard for him. The one symptom we address is his irritability. We just make a comment like, "Are you feeling ok? You seem irritable." And then he usually will adjust by talking or going into his room for a little while and calming down. Yesterday was better. Today he's helping my husband with a major chore. So we'll see how well he is able to cope. We have long understood that our son's illness has ebbs-and-flows that vary form day-to-day. What do you do when your loved one's symptoms are running high? How do you support them until the illness subsides again?

Friday, February 22, 2013

When will it be time for our story, families like the Lanza's, to be covered by the media?

Michael Schofield (The Jani Foundation) wrote this blog on his site (http://janisjourney.org/index.php?option=com_myblog&show=30-minute-life-the-end-is-not-as-fun-as-the-start.html&Itemid=94) entitled 30 Minute Life (The End is Not as Fun as the Start about the piece aired by Frontline/Hartford Courant “Raising Adam Lanza” on PBS. Another discussion about gun control. Nothing about what it's like to be a parent of a child who has such a severe disorder, a medical disorder, that they can end up hurting others. Nothing about how Nancy Lanza, Adam's mother, was his first victim. Nothing about Nancy being included in the victim count. Michael states in his blog post that, "I wanted to hear from Nancy Lanza." I want to hear her story, too! I want to hear what happened. Because so many families are living with a similar situation with their loved one. They live in fear of violence due to an untreated medical condition that is being ignored by our Health Care industry. A medical condition where there is no accountability for mistreatment from society, officials like most police departments, hospital staff, doctors, mental health staff, or from our schools and colleges. Where is coverage about her side of the story? A story that so many of us share. I'm all for tighter gun controls however that will not stop the problem. Families need to have quick access to intervention with access to longer hospital stays to start treatment. Families need to be an important part of this process. Then, we need to be able to get court assisted treatment compliance and proper continued support for our loved one. I'm not feeling numb about the neglect anymore from the media's one-sided coverage. Now, I'm feeling angry! We need our story to be told!

Monday, February 11, 2013

A Most Amazing Video!

This is one of the most amazing videos that I have seen that artfully expresses some of the joys I feel about successfully getting the intervention, treatment, and remission of my son's severe brain disorder. I have my son back and we're enjoying a unique relationship that is so special, not everyone could understand unless they were in a similar situation. Please watch this as it can apply to all children as well. And all good parents! http://vimeo.com/11305685 Q&A from StoryCorps PLUS 2 years ago NOT YET RATED Joshua Littman, a 12-year-old boy with Asperger’s syndrome, interviews his mother, Sarah. Joshua’s unique questions and Sarah’s loving, unguarded answers reveal a beautiful relationship that reminds us of the best—and the most challenging—parts of being a parent.

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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