Re Post: Sunday, June 24, 2012 Why should we have Assisted Outpatient Treatment (AOT) laws?

Due to the recent blood shed in CT, I have re-posted this blog I wrote some time ago: Just a little something to think about if you have ever tried to care for someone who suffers from an untreated severe mental illness with severe symptoms... For those who suffer from an untreated severe mental illness, time is brain. With each psychotic episode they lose the brain cells they will need to recover with. To make things more complicated, a symptom of the illness (a brain malfunction in the frontal lobe) prevents those who suffer with this from being able to realize that they need help. It's called anosognia. Insight and Psychosis by Xavier Amador & Anthony David. Brain & Behavior Quarterly Spring 2012 page 30, gives a simple yet important breakdown to mental health. Step 1 Discovery: Understanding malfunctions in the brain. Step 2 Treatment: Reducing symptoms and retraining the brain. Step 3 Recovery: Supporting rehabilitation to enable full, productive lives When a person suffers from anosognia they do not want Step 2 because they do not think that they are ill. Untreated, they will continue to loose brain cells. Step 3 can not happen without Step 2 for these few who have such severe symptoms. It’s just common sense. Some who have a severe mental illness but do not suffer from anosognia can get help on their own. Only a few cannot because their symptoms are so severe. Their brain disorder is so severe. That’s why we need Laura’s Law fully implemented and funded here in California. That’s why we need AOTs in every state. To help those who cannot help themselves. To save lives. 


'Food Warrior'

This week we have passed another mile stone in our son's progressive 'recovery'! He has started to collect donated fresh produce from a local Farmer's Market and deliver it to the West Valley Food Pantry so that those in need might be able to have fresh fruit and vegetables to eat. He really took charge, introducing himself and his older sister to the vendors and the person who oversees the market and expressing his gratitude to them for their 'fresh' donations. He then unloads the donations at the West Valley Food Pantry where the volunteers put them in order. He declared himself a 'Food Warrior' who brings much needed food to the needy! Such a great step forward for his self-esteem and for building his connection with the community where he lives by contributing his service. We are so grateful he has come so far!

Our first step was intervention. Jail was used due to lack of hospital beds...

What will it take to provide the needed hospital beds and continued support services for the SMI who suffer from severe symptoms the treatment they have a right to? There are protections in place for psychiatric abuse, but what is in place to reduce the severe symptoms of those who can not get help for themselves? Should we be satisfied with the care the streets and jails provide for them? For our family, it wasn't even a consideration! Our son needed treatment not punishment! He needed a safe environment to recovery in and not more trauma that is found on the streets and in the jails! We would never consider putting someone with dementia in jail or loose on the streets as a punishment for the symptoms of their brain disorder. Why is it ok for this form of brain disorder? It isn't right. It isn't ok. I petitioned the court to have our son released into my custody so that we could get him the treatment he needed and not the punishment he would find in jail. AOT was not available to us so I requested that compliancy to treatment be part of his probation to which the judge so ordered. Our son was beyond talking or reasoning with. At this time his attention span was less than one minute. The inner stimulation was so strong and constant there would be a 10 second delay in any response to a question or statement we directed at him. Nothing short of compliance to treatment could bring him back from that. For some, this is what the first step looks like. Without it, nothing else is possible.

A time and a place...all needed when he was ready

Through the course of the intervention, treatment, and a lasting recovery for our son (he has been relapse free for over nine years) we have used various methods that may appear to some to conflict with each other. I would just like to say that for us, there was a time and a place for everything we have done for and with our son. There was a time when we needed to have court involvement to get him to be compliant to treatment. A time when we wrote a contract for him to live at home. A time when we had reinforcement programs to encourage wanted behavior and a time when we faded the programs because we no longer needed them. A time when we could talk with him about why he should take his medication and then when he regained some insight to his illness. It has all been a process. There has been a time and a place for many different and conflicting philosophies regarding how to approach intervention, treatment, and recovery. I would just like to say that in our son's case, there has been room for all in it's proper time when he was ready. I don't see the different methods as conflicting. I see them as offerings for the time when he's been ready for them. Helping him and us to the next level. For us, there is room for AOTs, ABA, and for techniques from the LEAP Institute. For us they work well together to help us achieve our goal. A lasting recovery for our son.

Healing thru Family:From the smallest member

Today is my grandson's fifth birthday! I've been caring for him since he was three months old. About the time our son came home from a lock down facility in Texas. My grandson has brought so many blessings to our family that all children bring and more. As my son has been watching his nephew grow, and when he was ready, he has taken part in some of my grandson's activities. This has healed many parts of my son that we would not have been able to reach otherwise. He has learned more about unconditional love, how to be more conscience when working with his smallest family member, and how early experiences help shape what a person he will become as an adult. And patience! My son's healing includes his being able to remember parts of his own childhood that he had forgotten about (I would provide pictures of him when he was my grandson's age along with stories) and look at other parts of his past from a different perspective. This has been such a great source of healing for him! Because of our close family relationships, and under my supervision and guidance (again, when he was ready), my son has learned how to talk to his nephew in an age appropriate manner. He has learned how to teach his nephew simple cooking projects and has accepted the responsibility of helping with his physical education by teaching him how to bowl, play miniature golf, and other activities that they can enjoy as they each continue to grow. We have been very blessed to be able to have an extended family. My grandson has greatly benefited from my son's involvement, too, and he loves his uncle dearly! I always provide support for my son when he is with my grandson. He never feels as if he is 'alone'. My daughter makes herself available by phone to him always and my son likes to call her about the latest funny thing her son did. Sometimes my son watches my grandson, in a public waiting area, while I have a doctors appointment. My son knows about my grandson's 'survival kit' and how to manage any behavior he may have while I'm seeing the doctor. My grandson listens to his uncle and both enjoy this time together. Although we limit the duration and the frequency to keep my son's stress level down. My son is 6'3" and now weighs about 260 pounds. My grandson is about 3' and weighs about 40 pounds and has his uncle wrapped around his little finger! I often hear my grandson shout at my son, "No! I do it!", and I hear my son's gentle laughter in response. My son is very protective of his nephew and his love and sense of belonging to the world has been expanded due to this little guy. He is our littlest member of my son's support team! And highly valued!

He's in charge of his medication now!

It happened so 'matter-of-factly' just a couple of weeks ago, when our son started to prepare his weeks worth of medication and supplements using a complete list as a guide, with his father checking to be sure everything had been included in each little container. One for each day of the week. Now, he's handling this responsibility on his own with only spot checking being done by his father. He's come such a long way from his feeling that he wasn't ill and he didn't need to take medication to now is huge for all of us!!! A giant step in his becoming more independent and managing his illness. Once again, we are blessed! It all happened a little at a time, step-by-step. But the first step was his compliance to treatment.

CCA (Circle of Comfort & Assistance) Now on Facebook, too!

In order to try to reach as many people as possible, I have added CCA to Facebook! Just find us and join!

CCA (Circle of Comfort & Assistance)

I have just started an international Linkedin group called CCA (Circle of Comfort & Assistance) for people who have a loved one who suffers from a severe brain disorder. Come and check it out. Share, listen, or voice issues that need a solution. Find out that you are not alone and how others are managing the special challenges that these illnesses bring.

I Keep it simple with humor, respect, and love

Although we are enjoying and we are very thankful for our son's recovery, compared to what life was before we found the right medication for him, we still have some issues that may never go away. Working on certain life skills that need constant prompting can really start to wear one down unless the task is taken with a grain of salt. Keep the prompt simple with humor, respect, and love. For instance, clean clothes can be a challenge. The old 'wear it once and wash it' didn't stick. So I chose to get creative and a little silly with my prompts to keep humor and love in our relationship. So I said that I loved him and he deserved to be 'clean and neat and smelling sweet' all the time. Terrible I know, and in other circumstances with someone else it might not work. This time I was lucky and he smiled. He even chuckled a little as he repeated what I said. That's all the reinforcement I need to keep finding simple, respectful silly phrases that come from love.

All His Hard Work is Finally Paying Off!!!

Since he started his Clozapine trial almost 5 years ago to the month, my son has had to have weekly blood tests due to low white cell counts which can be a side effect of the medication. While he dipped at times, he was never low enough to be taken off his meds. For that we are grateful! Today we received news from ICPS, his blood monitoring company, that all his hard work with his diet change, exercise, and weight loss has resulted in enough 'normal' white cell counts that he can start getting his blood tests done every-other-week now!!! Our next goal is to maintain or improve his white cell count so that in the next 6-8 months he will only need one blood test a month. Where he should have been 4 years ago. But we're happy as long as he gets there!! Tonight is cause for celebration!!!

Minds on the Edge http://www.mindsontheedge.org/

'Minds on the Edge' "Facing the issues of Serious Mental Illness" This is a great resource. Also on facebook.

Recovery for us means Flexibility, Education, and a Unified Front

Support of our son’s emotional growth is one of many critical components in our son’s continued recovery. Along with our own ability to stay healthy while helping him. We use the book “How to Raise Emotionally Healthy Children: Meeting the Five Critical Needs of Children...and Parents Too!’ by Gerald Newmark, Ph.D.; “I Am Not Sick, I Don’t Need Help” by Dr. Xavier Amador with Anna-Lisa Johanson; “Trust After Trauma: A Guide to Relationships for Survivors and Those Who Love Them” by Aprhrodite Matsakis, Ph.D. from the Sidran Foundation; also various Al-Anon material to give us the flexibility through our own education in order to address the evolving emotional needs of our son and ourselves through this process. From ‘How to Raise Emotionally Healthy Children” we are able to examine through the way they break it all down, if we are meeting the five critical emotional needs that everyone has: Being Respected Feeling Important Feeling Accepted Feeling Included Feeling Secure Using “I’m Not Sick, I Don’t Need Help” and “Trust After Trauma” we are able to think about how to approach and how to communicate best with our son. Using some slogans from Al-Anon help us to ‘Keep it simple’ so he can better process and remember what we discuss. It also serves as a source of support for wanted behavior. For us, it reminds us that we need to care for ourselves, too. We have family meetings to discuss issues and solutions where our son has equal input and can bring anything to the meeting to discuss as well. This helps to give us the flexibility to change certain things as he progresses in his abilities while keeping to the general frame work needed as well as keeping everyone on the same page. When a new task is presented, I still use the standard Applied Behavioral Analysis approach that is tailored to our son. This helps to set him up to succeed and therefore helps to build up his self esteem. Thus, we are able to move forward at his pace. This is an over simplified outline of what we do to support his emotional well being but it is a good outline and a great place to start and we return to it when needed.

More psychiatric beds! More available treatment!

Did anyone watch Dr. Xavior Amador on Piers Morgan? Dr. Amador was saying (not his exact words but my understanding of what he said) that the stigma lies with the decrease in hospital beds and lack of treatment available to those who suffer from the first 'break' of a psychotic episode which on an average is age 24. The age of James Holmes. Breaking the slogan or mission statement down to the basic need is important. More beds, more treatment!

Clarification

It has been brought to my attention, and rightly so, that I have not made a very important point clear so I will try to do that now. I have a great deal of respect for my son’s wishes and the choices he makes in his life. This includes but is not limited to posting information about his condition, treatment, and recovery. All the information on my blog site concerning my son has been done with his approval. All information he does not want me to share will not be shared. Should he change his mind at any point in the future about what has already been disclosed, that information will be removed. My son hopes to someday have a book out that will give others who suffer as severely as he has some hope that there is a better way to live life. To hang on and stick it out because with time, things will get better. It will be his story. He told me that he wants to say the things he would have wanted to hear when he was struggling with not wanting to accept treatment and feeling so very confused about the world he found himself in. He hopes that his story might encourage more people to get help. This book may or may not happen. To our family it’s about the healing process of working on such an ambitious project, having the heart to help others, and most of all the insight he has gained since being on Clozapine for almost five years now. We do have our son back. We haven’t forgotten how we came to this place in time or how quickly it can change should he decide to stop being compliant to medication. We are grateful and feel blessed to have regained so much. We are well aware how differently it could have turned out. That is why I started this blog site. Not to dictate any ideal, medication, or specific behavioral modification program that I feel will work for everyone or anyone who suffers from a brain disorder. Only to explain what we did that worked for us in the hope it might give others another option they may want to try if they think it might benefit their situation. I do not believe that those who don’t need medication should have to take it. However, I strongly believe that those who do need it but can’t get it because of the very brain disorder that threatens their life and perhaps the life of others should be able to get it. It has saved my son, myself, and our family.

He's Feeling Better Than Ever!

Along with his newly embraced ‘diet’ (portion control, no to little sugar, red meat once a month) and exercise schedule (cardio two times a week for at least 1/2 hour at the gym plus one day swimming and a lot of walking around), our son takes the following supplements under the advisement of his nutritionalist and with the approval of his treatment team based on a current blood panel: Niacin 1500mg daily. We can really see a difference in the amount of 'inner stimulation' and improved cognitive abilities when he is taking this. Magnesium (citrate) 150mg B-12 5000mg daily. Promotes brain nerve health. B-2 (riboflavin) 100mg D3 6000I.U. daily. Helps so many bodily functions including heart health! He is tested for his D3 level so we don't give him too much which is toxic. C 1000mg daily. E 400 I.U. Omega-3 (Fish Oil) 2400mg daily. I would not recommend giving any supplements ( D3 and Magnesium - these levels need to be monitored as excess can be toxic) before consulting with professionals.

Why should we have Assisted Outpatient Treatment (AOT) laws?

Just a little something to think about if you have ever tried to care for someone who suffers from an untreated severe mental illness with severe symptoms... For those who suffer from an untreated severe mental illness, time is brain. With each psychotic episode they lose the brain cells they will need to recover with. To make things more complicated, a symptom of the illness (a brain malfunction in the frontal lobe) prevents those who suffer with this from being able to realize that they need help. It's called anosognia. Insight and Psychosis by Xavier Amador & Anthony David. Brain & Behavior Quarterly Spring 2012 page 30, gives a simple yet important breakdown to mental health. Step 1 Discovery: Understanding malfunctions in the brain. Step 2 Treatment: Reducing symptoms and retraining the brain. Step 3 Recovery: Supporting rehabilitation to enable full, productive lives When a person suffers from anosognia they do not want Step 2 because they do not think that they are ill. Untreated, they will continue to loose brain cells. Step 3 can not happen without Step 2 for these few who have such severe symptoms. It’s just common sense. Some who have a severe mental illness but do not suffer from anosognia can get help on their own. Only a few cannot because their symptoms are so severe. Their brain disorder is so severe. That’s why we need Laura’s Law fully implemented and funded here in California. That’s why we need AOTs in every state. To help those who cannot help themselves. To save lives.

Better Than Ever!

Since blood tests revealed that my son had inflammatory and pre-diabetes tendencies, he took the bull-by-the-horns and changed his diet all on his own! In a month's time he has lost close to 10 pounds and feels so much better! Conditions, he thought were caused from taking his medications, are clearing up showing him that it had been his diet all along! We are very grateful to Dr. Vanessa Passov, ICPS (his blood monitoring company), and his doctors at UCLA for supporting his new diet and bringing home the importance of eating the right foods! We are blessed!