About Me
- Deborah Fabos
- 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.
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.
Sunday, February 10, 2013
It's great when it works!
My son has just started taking GED classes at the local vocational center!
We have worked for years to get to this point and the most amazing thing about this is that he is totally self motivated to do this! There is no ABA (Applied Behavioral Analysis) program to motivate him only his own desire to get his GED.
I talked to him yesterday about how it was going for him and he said that it's going to take him longer than what he had thought. But although he was a little discouraged about the amount of time and personal effort on his part he has not let up on keeping a schedule at the center. A schedule that he set himself!
For someone who is low functioning as he has been in the past this is a huge step!
He hopes to pass the GED test by the end of this year. We are very pleased and we reinforce his being self-motivated. This is beyond our hopes before he started on Clozapine five years ago! He just keeps gaining ground!
And he is maintaining his volunteer work as a 'Food Warrior' for the local Food Pantry and still cooks dinner nightly. We are very grateful and feel very blessed!
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
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