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.
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.
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