Come to realize...

Although many of us can keep going nearly constantly without faltering, I've come to grips with my limitations when it comes to always being "on."  I'm not anti-social by any means, nor do I allow my disease of the brain define me, but I realize that sometimes, no matter what the situation, I need to take care of me. Would I have rather stayed awake with company at my house until nearly midnight, rather than crashing, after suffering for most of the day and taking medication? Of course! But I am aware of my limitations and the fact that I'm fortunate not to be in jail, homeless on the streets, or abusive to my family. After being on the treadmill (literally!) working out all week early in the morning, dropping my two sons off at school, working in the office full time, and then attending a caustic birthday party with my younger son today (he had fun!), I'm ready to crash, just the way it is! 

The cycle of garbage

Many times in life, we just blame things on our circumstances or health conditions, instead of delving deeper into the root cause of these problems with our health. "Oh, Johnny has a bad back," we say, or "Matthew just is like that, he has bi-polar." We tend to never stop and think that if Johnny lifted with his legs, maybe he wouldn't have a bad back, or if Matthew ate healthy foods, and didn't smoke pot three times a day, he'd be a lot better. These things, I say, is the cycle of garbage. Garbage in, garbage out. By doing things that are healthier for our bodies and minds, we will see what the end result turns out to be, vs eating garbage, doing things the same old way, and expecting a different result. I just quit smoking cigarettes, and already, I feel better. Imagine if I also ate healthier, and worked out on top of that? The results would be that I would feel on top of the world, extremely healthy.

Join us for Family to Family, beginning on Feb. 26th at 7pm

NAMI Hunterdon Family to Family A FREE, comprehensive 12-week course designed specifically for families of adult persons with major depression, bipolar disorder, schizophrenia, schizoaffective disorder, panic disorder, obsessive compulsive disorder or post traumatic stress disorder. This course offers information, coping skills, self-care and emotional support. Registration is required and classes are limited to 20 people. We think you will be pleased by how much assistance the program offers. We invite you to call for more information. Classes start Thursday, February 26, 7:00 – 9:30 p.m.at 52 East Main Street, Flemington, NJ. To register or for more information, call Priscilla or Larry @ 908-735-4465.

Silence (on Hallucinations) Blog Repost

Claudia Krizay Silence (on auditory hallucinations) Claudia Krizay Community Member July 02, 2011 Silence No light breaks through the bleak darkness- Not even the moon or the stars are visible Through the dense fog outside my window- An eerie silence echoes about- While the rest of the world sleeps- There is a song inside my mind Singing a jovial tune- Gusts of wind rush throughout the Branches on the trees outside my window- A pleasing sound- not threatening as would be The sound of a multitude of people talking- The sound of silence is safe- Interrupted perhaps by voices only I can hear, while I can hear the ticking of the clock- I can hear the windows rattling in the wind and Rain falling upon the pavement ten stories below- These are welcome sounds and Knowing I am safe in my solitude- Is a welcome feeling, and I would dance upon the ceiling if I could and If I could I would wish the world away, and I would become the sole survivor. As the wind blows and the rain falls, I am reminded that I am not alone and When the sun rises above the skyline, This world shall come to life and that jovial tune that resonates Inside my heart, mind and spirit shall transform to A melancholy dirge and as another day begins- everyone’s eyes shall be upon me- I can hear the ticking of the clock, The forcefulness of the wind and The sound of the rain pounding upon the pavement outside- Interrupted by voices that only I can hear- If I had one wish it would be that the world would stop spinning and be still- The hands on my clock would never turn and nothing would ever change- The ticking of the clock would still a welcome sound- and along with the sounds of the wind blowing and the raindrops hitting the pavement- would become A soothing lullaby rocking me to a peaceful slumber and I would dream of A place that would be mine alone and my closest companions would be The voices only I could hear- and while the world sleeps, an eerie silence Would echo about – a most welcome sound as could be- There would be nothing or nobody to fear and the hands upon the wall clock Would be forever frozen still- Claudia Krizay - See more at: http://www.healthcentral.com/schizophrenia/c/93829/140963/auditory/#sthash.XA45h3ia.dpuf

Stopping Schizophrenia in its Tracks (NAMI Blog Repost)

Stopping Schizophrenia in Its Tracks By Darcy Gruttadaro, Director, NAMI Child and Adolescent Action Center For those experiencing psychosis, early identification and intervention matter, a huge amount. It lessens the long-term severity and often prevents psychosis from worsening. An effective early identification and intervention program should include the following coordinated array of services and supports: Supported education and employment. Cognitive behavioral therapy. Peer support. Family support and education. Case management. Community outreach. Low dose antipsychotic medication. These services work so well because they are offered together to provide the skills and support that youth and young adults need to get better. They also take into account the context of a young person’s life and the key role that peers and families play in recovery. FEP programs reduce costly hospitalizations and put youth and young adults with psychosis on an early path to recovery. When you fund upstream interventions, you can prevent the tragedies associated with untreated mental illness: school failure, unemployment, hospitalizations, homelessness, jail and suicide. Investing in effective programs that intervene early produces far better outcomes for individuals, families and communities. There are effective strategies available, so why aren’t more young people getting help? One of the main reasons is that these services and supports are simply not available in communities. However, there has been progress made recently that to help ensure the availability of these resources in more towns and cities across the U.S. One significant event is that Congress has now required states to use 5 percent of their Mental Health Block Grant for First Episode Psychosis (FEP) programs. This means that states are obligated to set aside a certain amount of their federal funding to address the importance of early intervention. How Is NAMI Helping We recognize the urgency in expanding these programs. Our advocacy work and involvement in these programs is happening at all levels of the organization. NAMI NYC Metro is partnering with OnTrackNY, an FEP program, in providing support groups and peer support for youth and young adults experiencing early psychosis. NAMI Connecticut is offering peer-run young adult support groups located close to FEP programs to make it easy for young adults to join. NAMI Minnesota has partnered with an FEP program and is creating education and support programs for youth experiencing early psychosis and their families. Oregon was an early adopter of these services and supports, having witnessed the success of these programs in Australia. Tamara Sale, the director of the Early Assessment and Support Alliance (EASA) in Oregon and a former long-time NAMI Oregon board member, shared how their program works successfully with youth and young adults experiencing early psychosis. The EASA program recognizes that it can be difficult to engage youth and young adults experiencing early psychosis, so it uses strategic community approaches that meet young people where they are with messages of hope and relevance to their lives. They are flexible and persistent, even with youth and young adults that seem entirely uninterested in mental health care. What You Can Do FEP programs exist in a handful of communities and more must be done to spread these programs across the country. Here is how you can make sure that happens. Learn more about FEP programs. Understand why these programs are pivotal in creating better outcomes. Email or Tweet your Congressional members to thank them and to ask for their continued support of FEP programs. Connect with your NAMI Affiliate in advocating at the state and federal levels for FEP programs so that youth and young adults experiencing early psychosis can access effective services and supports. We can and must change the trajectory of people’s lives by intervening early with recovery-oriented and effective services. We simply cannot afford to wait.

Back and Forth: The Recurrence of Psychosis

Tiring as it is, it takes a lot out of you, being involved and afflicted with recurring psychosis. At one end of the spectrum, there is little to worry about, and life seems, in most regards, to move along swimmingly. Then, without warning, everyone is looking at you, watching, waiting to strike you down from their perches in trees, on top of buildings, from helicopters above and continually watching via hidden cameras planted just about everywhere. This distorted form of reality is both the trademark of those with schizophrenia, and the bane of our existence. How you handle it, how much support you have from your family and friends and the combination of medication therapy and coping strategies determine how you will fare. "...For it is the storm within that endangers him, not the storm without." And such episodes come and go, but luckily with the combination of coping strategies, family and friend's support and grit and determination to be well and whole makes me all the more strong at the end of the each day.

Robin Williams Suicide and Understanding Why It Makes a Huge Impact

August 12, 2014 **Update: Robin's widow has stated that he suffered from the early states of Parkinson's, shedding more light on his death. In addition, the actor's friend, Peter Coyote, who is a Zen Buddhist priest, posted the following remembrance for him, which I would like to leave as the most important share surrounding Robin William's suicide: "Robin William’s Last Gift Robin and I were friends. Not intimate, because he was very shy when he was not performing. Still, I spent many birthdays and holidays at his home with Marsha and the children, and he showed up at my 70th birthday to say “Hello” and wound up mesmerizing my relatives with a fifteen minute set that pulverized the audience. When I heard that he had died, I put my own sorrow aside for a later time. I’m a Zen Buddhist priest and my vows instruct me to try to help others. So this little letter is meant in that spirit. Normally when you are gifted with a huge talent of some kind, it’s like having a magnificent bicep. People will say, “Wow, that’s fantastic” and they tell you, truthfully, that it can change your life, take you to unimaginable realms. It can and often does. The Zen perspective is a little different. We might say, “Well, that’s a great bicep, you don’t have to do anything to it. Let’s work at bringing the rest of your body up to that level.” Robin’s gift could be likened to fastest thoroughbred race-horse on earth. It had unbeatable endurance, nimbleness, and a huge heart. However, it had never been fully trained. Sometimes Robin would ride it like a kayaker tearing down white-water, skimming on the edge of control. We would marvel at his courage, his daring, and his brilliance. But at other times, the horse went where he wanted, and Robin could only hang on for dear life. In the final analysis, what failed Robin was his greatest gift---his imagination. Clutching the horse he could no longer think of a single thing to do to change his life or make himself feel better, and he stepped off the edge of the saddle. Had the horse been trained, it might have reminded him that there is always something we can do. We can take a walk until the feeling passes. We can find someone else suffering and help them, taking the attention off our own. Or, finally, we can learn to muster our courage and simply sit still with what we are thinking are insoluble problems, becoming as intimate with them as we can, facing them until we get over our fear. They may even be insoluble, but that does not mean that there is nothing we can do. Our great-hearted friend will be back as the rain, as the cry of a Raven as the wind. He, you and I have never for one moment not been a part of all it. But we would be doing his life and memory a dis-service if we did not extract some wisdom from his choice, which, if we ponder deeply enough, will turn out to be his last gift. He would beg us to pay attention if he could." News of Robin William's suicide on Monday put a dent of grief into the nonstop broadcasts of war and other violence, and the gap of grief has expanded into days. With it, there has been talk on the Internet, and some of it has been so good that I felt it would benefit to share: "I remember having Mork suspenders and crying when I watched Dead Poet's Society. I feel much like I did when Phillip Seymour Hoffman died - like a light went out. That's the thing about so many artists, they make you feel more connected to the world. They give you this gift of depth and connection, all the while battling isolation and pain. We have all been filled with despair so big that it takes our breath away but pain, even the deep and relentless kind, has an end if only we can hold on long enough. Everyone tells people to reach out when they're hurting but I think that sort of pain is paralyzing and unfathomable. Before anyone needs to reach out - tell people how much they matter. Don't just tell your parents or your children or spouse. Tell your third grade teacher, the author of a book that changed your life or the guy that makes your morning coffee. When you tell someone they matter you express your gratitude for someone's presence and gifts. What you're really saying is, "I am so grateful you are alive and the world is made better by your presence." Don't wait to tell the world how wonderful someone is at a funeral. Look someone in the eye today and tell them that their example made you a better man or woman, tell them that they gave you hope and helped you to live your best life. Don't be stingy with love and praise and kindness. They are FREE! There is no such thing as too much love. And yes, it may not save anyone, but maybe it will, and if it doesn't then at least they will know that they were deeply loved and you will know that you said it out loud and they heard you. Dear Robin may you rest in peace. I know your soul must have been so tired. Thank you for making be laugh and cry and bringing so much humanity to your work. You will be missed." - Anna Marie Houghtailing When lights of Robin's stature go out, especially by their own hand, it does something to the whole world of people who have been moved by that individual. It's like a call to attention. The grief, the loss, it forces us to appreciate what we no longer have. Could it be prevented by having appreciated the person more fully in their lives? It's not a sure bet, but it can't hurt. One thing is certain - when someone chooses to take their own life, (s)he feels out of options. The pain has become intolerable. The peace of death is the only solace that remains in their estimation. It's a very serious decision, and a completely personal one that we are not free to judge. ...I felt compelled to write this article because like any mental illness-related accident or death, there by the grace of God go I. And it’s not only in poor taste to deride a man who by all accounts, was going though severe depression at the time of his death, it’s also just plain wrong. Suicide isn’t “giving up” or “giving in.” Suicide is a terrible decision made by someone whose pain is so great that they can no longer hold it, and feel they have no other option in life but to end it. It’s a decision you can’t take back, and a decision that will affect your friends and family forever. It is not taken lightly. Losing a person to suicide may feel like a waste. And I think it’s fair to react to it that way, especially in the first hard days of grief. For someone looking in, it does seem like a waste—especially in the case of Williams, who was a brilliantly funny man and a talented actor. But imagine, if you will, feeling so desperate, so desolate, so incredibly sad and hurt that you honestly cannot see a way out. The feelings leading to suicide are the darkest a human mind can fathom. It’s like being shut into a dark tunnel with no point of light to guide your way. You can hear voices on the outside, but the walls are too thick to get in. And feeling like it’s closing in, like there’s no way out—well, suicide, for that person, is a blessed release. Life, however, is never wasted. Williams did things in his life that touched people to their core. It is a sad, sad loss, but it is not a waste. "Suicide is not a weak decision. It is a decision that takes an incredible amount of strength to make, actually. Someone isn’t weak if they end their life. They are desperate. There is a difference. It’s okay to feel angry at the person for dying. It’s okay to question, to rail against the forces that caused this. But it isn’t weakness. Mental illness isn’t weakness. It’s a disease, a pervasive, sometimes awful disease. The person doesn’t deserve anger and skepticism forever. They deserve compassion. Their family deserves compassion. Ending a life is incredibly, incredibly tragic. It represents a lost battle with mental illness. In that, it is no different than cancer, or diabetes, or a heart attack. Where it is different is that suicide is a choice. Whether it is the right or wrong choice for that person is solely the business of that person who commits suicide. But for the family left behind, it is devastating. Don’t rail against Robin Williams, or anyone else, for committing suicide (if indeed, that is the cause of his death). Instead, reach out. Let people know you’re there for them. Find a crisis line in your area to call if you are feeling desperate and like you want to do something you can’t take back. Support the family and friends left behind in the best way you can. Let the people you love know that you love them and that you are thinking about them. Let them know that they are not alone." - Elizabeth Hawksworth "What Depression Isn't" Reverend Coyote, Ms. Hawksworth, and Ms. Houghtailing said it so well that I'd just be imitating them. Then we have this, from a Jungian expert: "That is where I would praise him, for what he has managed to do for six+ decades; handle fire, while being made of parchment."- DR. Clarissa Pinkola Estes, Managing Editor of TMV, and Columnist I always saw the pain and sensitivity in Robin Williams, because I know that pain and sensitivity too. I am grateful that he held the darkness at bey for so long, and that he succeeded in shedding as much love, light, joy, and heart as he did. He was a giant who shone for us, for decades. Thank you, Mr. Williams. It was an unforgettable lifetime, and you will live on forever in all those whom you touched. Our numbers are vast. The image accompanying this article has a number for a suicide hotline. Please don't wait to reach out. You are important, you matter, and the world needs you. And if you sense someone in need, reach out. Sometimes a phone call can save a life.

Slate.com Article Repost. Violence is not a product of mental illness

In the 1980s, around the time of the massive deinstitutionalization of the mentally ill, I was working toward my degree in clinical psychology by training at a psychiatric hospital in Washington, D.C. One sweet, diminutive, elderly patient sometimes wandered the halls. She had been committed to the hospital after she stabbed someone in a supermarket. She was what is sometimes referred to as a revolving-door patient: She was schizophrenic and heard frightening voices in her head, and when she became psychotic enough, she would be hospitalized, stabilized on medication, and then released back to the community. There she would soon go off her medication, become psychotic, be rehospitalized, stabilized again on medication, released, etc. At her commitment hearing, she testified that she had become extremely upset in the grocery store before repeatedly stabbing the man in front of her in the checkout line. The hearing officer, aware of her history and sympathetic to this woman with such a sweet demeanor, asked helpfully if she had been hearing voices at the time. Yes, she replied, she had. “And what were the voices telling you?” the officer inquired supportively. She explained that the voices were telling her not to hurt the man, but he had gotten in the express checkout lane with more than 10 items, and that made her so mad that she couldn’t stop herself. In addition to being a valuable cautionary tale about grocery etiquette, the story illustrates an important truth about violence and mental health: Violence is not a product of mental illness; violence is a product of anger. When we cannot modulate anger, it will control our behavior. In the wake of a string of horrific mass shootings by people who in many cases had emotional problems, it has become fashionable to blame mental illness for violent crimes. It has even been suggested that these crimes justify not only banning people with a history of mental illness from buying weapons but also arming those without such diagnoses so that they may protect themselves from the dangerous mentally ill. This fundamentally misrepresents where the danger lies. Violence is not a product of mental illness. Nor is violence generally the action of ordinary, stable individuals who suddenly “break” and commit crimes of passion. Violent crimes are committed by violent people, those who do not have the skills to manage their anger. Most homicides are committed by people with a history of violence. Murderers are rarely ordinary, law-abiding citizens, and they are also rarely mentally ill. Violence is a product of compromised anger management skills. We are a culture awash in anger. In a summary of studies on murder and prior record of violence, Don Kates and Gary Mauser found that 80 to 90 percent of murderers had prior police records, in contrast to 15 percent of American adults overall. In a study of domestic murderers, 46 percent of the perpetrators had had a restraining order against them at some time. Family murders are preceded by prior domestic violence more than 90 percent of the time. Violent crimes are committed by people who lack the skills to modulate anger, express it constructively, and move beyond it. The Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition, the reference book used by mental health professionals to assign diagnoses of mental illness, does very little to address anger. The one relevant diagnosis is intermittent explosive disorder, a disorder of anger management. People with IED tend to come from backgrounds in which they have been exposed to patterns of IED behavior, often from parents whose own anger is out of control. But the DSM does not provide a diagnostic category helpful for explaining how someone can, with careful advance planning, come to enter an elementary school, nursing home, theater, or government facility and indiscriminately begin to kill. Lt. Gen. Mark Milley, Fort Hood's commanding general, speaks during a press conference on April 2, 2014, about the shooting that occurred there earlier in the day. Lt. Gen. Mark Milley, Fort Hood's commanding general, speaks during a press conference on April 2, 2014, about the shooting that occurred there earlier in the day. Photo by Drew Anthony Smith/Getty Images Violent crimes committed by people with severe mental illnesses get a lot of attention, but such attacks are relatively rare. Paolo del Vecchio of the federal Substance Abuse and Mental Health Services Administration has said, “Violence by those with mental illness is so small that even if you could somehow cure it all, 95 percent of violent crime would still exist.” A 2009 study by Seena Fazel found a slightly higher rate of violent crime in schizophrenics—but it was almost entirely accounted for by alcohol and drug abuse. Likewise, the MacArthur Violence Risk Assessment Study found that mentally ill people who did not have a substance abuse problem were no more violent than other people in their neighborhoods. With no clear explanation of the causes of violent crime from the mental health field, and with significant encouragement from the gun lobby, the public has begun to seize on the wrong explanation for tragic, violent events. They focus not on the IED-diagnosed patients but on those with other diagnoses, schizophrenia in particular, ignoring the fact that what the perpetrators have in common in every single one of these cases is a loss of control of their anger.

A prolonged, non-drug induced and horrific psychosis

To the ones who don't believe that mental illness is real, I say this: have you ever had to suffer a pervasive, prolonged and non-drug induced "bad trip?" In fact, I never do drugs, yet this evening, I felt as if I were having a bad acid trip, mixed with a heroin overdose. None of these things would be possible were it not for schizophrenia, the dreaded disease of the brain that affects nearly 1 per cent of the population worldwide on any given day. To make matters worse, I was solely responsible for the well being of two sons, one 7 years old and one 3 years of age. There is nothing more humbling than that of having to care for a child while under the mental illness knife, that cuts deeper than a scalpel in an operating room. To the voices, I say, leave this old hat alone- he has weathered enough storms. To the paranoia, I plead, let the peace of mind wash away your caustic inky blackness. And to the delusions and over-stimulation, well, let's not add insult to injury. Wellness begins at home. It takes time. This too shall pass.

A Reblog from Americamanifesto

americanifesto in Kuta Lombok I went to town to look around and took in many things: I saw one cow – don’t ask me how – and one bird with brown wings. It sang a song both loud and strong to flee its cage it sought, wreathed in a cloud of burning trash – sad things mankind has wrought. The ride this morn was swift and fleet we slept perhaps three winks, in captain’s berth we sampled mirth, the ferry did not sink. Now through this cabin we explored while sleep into our brain-pans bored, we looked in cubby; cranny; nook; as wave and sea the vessel shook. There was the book by Chairman Mao – his lesson, guide, and rule – three fancy shirts, a dead cockroach, some bits of foam, a toilet brush, the AC vented cool. Then through the hills and sopping fields our caravan did wander, in search of places rich in surf from here to there and yonder. We quarter in a spartan room, the basics they are present, my company is quick to laugh – indeed she is quite pleasant. The waters glint with pla stic junk, so much it can’t be counted; now off to rest, to try this bed, with consciousness dismounted.

When everyone else goes to bed each night, I lament the days' wasted truths--that all I get to celebrate is being a pauper (albiet with a beautiful family) and someone who suffers with major mental illness. Schizophrenia is not a joke. There are some good times, yes--but moreover there are struggles and disappointments that go along with it, each and every day. That is why I am a Trustee of the local NAMI chapter--so that I can help others the way people have helped me through some deep, dark times in my life. Although there'll never be a cure, each day, I look forward to my medication management as well as my coping strategies and support system to help me get better. X

On hearing voices while at Elementary School to pick up my son

The paranoia had returned, and it had brought with it overstimulation. I was at the elementary school of my son, who was in second grade, my three year old younger brother and son in tow. It had come onto me on the ride to the school, and I had attempted to stave off the symptoms with a bit of seroquel in the car as well. It was the worst 15 minutes of my day, to be sure, waiting for Tyler to come from Art Club and sign him out. The art teacher, usually not talkative after the club let out, decided to ask me about my younger son today. I answered curtly that he was my youngest, as any schizophrenic who just wanted out would do. The time had come to go home, and I knew a ride from hell awaited me. No matter, soon I would be home, in the confines of my safe house, I could rest up and let the demons pass. -Everything2show4

NAMI Blog Repost

Kristen's Story It's hard to believe that 2013 is almost over. For me, 2013 was an awesome year: I finished college, I applied to start graduate school, I returned to full time employment, I got engaged, I turned 30, and, well, I'm alive. I really never thought I'd be able to say that: I'm thirty and I'm alive. For most people this isn't a big deal. For me, it's groundbreaking. My mother has always told me that "fear is a powerful motivator." She's right. However, I've also learned that hope is a powerful motivator. And, while I have a wonderful support system, hope came for me in the form of NAMI NJ. We often hear how NAMI NJ can save families and how it helps parents and their ill children (or vice versa) and gives them a way to open a much-needed (and very, very hard) dialogue. For me, it was a little different. I became ill young. Elementary school young. My parents, being the proactive, supportive parents they are, sought the best of care for me. Suicidal at eight, cutting myself by twelve, by the time I hit high school I was already diagnosed with major depression. As I got older, major depression became bipolar II. As I got even older, I was finally diagnosed with schizoaffective disorder. However, I was lucky. My parents, not wanting to limit me, never told me I was "sick" or "disabled." This is not to say that I did not know why I went to the psychiatrist every week or why I took medicine every day, it is simply that my parents refused to tell me that there were things of which I was not capable because I lived with mental illness. They treated me, and pushed me, as if I were any other child-as if I were "normal." How NAMI Has Helped When I came to NAMI NJ I already knew about, and, for the most part, accepted, my illness. I knew that I'd be on a cocktail of meds and in therapy the rest of my life. The problem was: I was unsure of how long that life would be. I had been early decision at Columbia University. I had been a supervisor in a distribution center with a sizable staff under me. I was no longer any of these things. By 27 I was divorced and on Social Security Disability. I had even begun to say that I was "disabled." I had already learned to start to doubt my experiences-what I heard, what I felt, what I perceived. I had also, however, begun to doubt my existence and whether I mattered. As I sat at home on the couch (I no longer left the house for work or school so I no longer left the house) my mother said to me, "Honey, I love you, but get off my couch. Go do something, anything." I had read about NAMI and so I sent an email to NAMI New Jersey (secretly hoping no one would answer). Lo and behold, my email was returned in a matter of hours. My simple email inquiring about volunteering opportunities was met with, basically, "Great! We're hosting our Kick-Off Luncheon this weekend. You can start tomorrow!" So, for the first time in I don't know how long, I ventured out of my house, totally alone, to meet some people I had never even spoken to on the phone, let alone seen in person, before. To say I was nervous is an understatement. I honestly don't know how I got out of the car or made it up the stairs. But I'm glad I did. What started out as helping put decorations on tables soon became helping plan the NAMI New Jersey Walk since it is held in my home county. This led to my not only joining my local affiliate but to today being on the its board, leading the NAMI Connection group, and being an In Our Own Voice presenter. This also, coincidentally, led to an internship in the state office. I started slowly at ten hours a week. I'm now in the office forty hours a week as a full-time employee. And, believe it or not, I love going to work-which I never thought I'd be able to say again. As I said, NAMI NJ has given me hope. I had never before met anyone else, outside of the hospital, who had mental illness. I had never met anyone else with scars on her wrists and arms or who could tell me that he heard things too. I learned that while I may be different, it's who I am as a person, and not my diagnosis, that makes me unique. And, most importantly, I learned that I really could have a future-with a family and a job and plans. I learned that I no longer wanted to die. While I'm still motivated by fear-I take my daily meds and go to my weekly therapy because I am scared to go through another psychotic break-I'm more motivated by hope. And NAMI.

Seen some research and DSM-5

Genome studies currently as well as DSM-5 and TRoC discussions. 

At NAMI NJ Annual Conference

Greetings from the NAMI NJ Annual Confeence at the Crown Hotel in Monroe. 

Today is going to be a productive day of speakers, fighting stigma and advocacy. 

I'll post updates as they happen throughout the day. 

NAMI.ORG Interview Repost

Helping Your Child Stay Organized and Handle Adversity By Brendan McLean, NAMI Communications Manager The Sensory Child Gets Organized: Proven Systems for Rigid, Anxious, or Distracted Kids By Carolyn Dalgliesh Purchase For Carolyn Dalgliesh, it was learning how to take the ideas and strategies that she gained from doctors and applying them in day-to-day activities at home. Doing so helped ensure that everyday challenges with her son, such as doing homework, eating dinner or going to bed, were met with as much preparedness as possible. Many parents with children affected by illnesses such as ADHD, OCD and anxiety, often face many challenges in learning how help their child, much like Dalgliesh experienced with her son. Carolyn Dalgliesh took the strategies that she found beneficial in her experience with her son, and turned them into a book to assist others. In The Sensory Child Gets Organized: Proven Systems for Rigid, Anxious, or Distracted Kids, Dalgliesh provides a straightforward guide for parents to help their children. While not a mental health professional, she draws on her own personal knowledge as a mother and as a professional organizer to provide suggestions to parents of sensory children, a term she uses to describe children with ADHD, anxiety disorders, sensory processing disorder, autism spectrum disorders and bipolar disorder. I spoke with her recently about her organization strategies, methods of parenting and what it’s like to be parent of a sensory child. You use the term “sensory children” to group children with illnesses like sensory processing disorder, ADHD, anxiety, bipolar disorder, OCD and autism spectrum disorders. How did you decide on this term to encompass all of these conditions? I think I really did it based on my own experience but also from what I learned as I was starting to work with families. One of the first signs of either developmental delays or behavioral issues beginning to manifest for a lot of kids is by the way they process information through their senses and how it was really impacting how they were experiencing their days and the world around them. So I really wanted to start where I thought many parents would be starting, which was that first experience of noticing something was a little different with their child. And, and that often came through how they were processing the world around them. As a parent of a sensory child, how did your own experiences help guide you in writing the book? The first time I came across the topic was with my own son. When he was around two we started noticing developmental delays and started the process of getting evaluated. One of the first names that got mentioned to us was sensory processing disorder. For each kid it’s different, but we could just see that in a big, busy place it was really overwhelming for him. He didn’t know what to look at first or how to break down information that was coming at him visually or aurally. I took my experiences and knowledge and thought they might be able to help other parents navigate the difficulties that I had. Are there any particular sources that you’ve drawn upon to help form your own ideas about how to parent a sensory child? For me it was a couple of things. It was definitely my own experience and my own total lack of understanding. My own child was a high functioning child so we were not really eligible for a lot of services. I just remember having speech and occupational therapy once a week and I would just pepper the therapists with questions. It wasn’t really about the therapy, it was about everything else in our day: how could I get him to a birthday party, how could I cut his fingernails, how could I get him to sit at the dinner table. There were many things that I found counterintuitive to what I thought parenting would be. 5As I was learning to understand what life would be like as a parent to my son, I realized that although I was incredibly organized, I wasn’t organized in a way that made sense to him. I was rigid and distracted in my own way and what I really had to do was understand what I could do to support him. That was really tough for my brain. I had to redefine not only what organizing looked like, but parenting as well. For parents discovering that they have a sensory child, what are some of the steps they can take to help their child? I think the most important step is to really redefine parenting. There was a lot that was just very different in the way I thought about parenting and the way it turned out to be. Personally, I had to consciously make that shift. The other part for me I would say is learning to objectively observe your child. We’re so close to our kids, but if we’re too close and too judgmental we really lose the ability to advocate for them. It’s such a hard shift but to me that is one of the most helpful things. You’re really able to learn valuable information about how to support them. The other thing is to constantly prioritize what their needs are. Every day you may have to sit down and think about your biggest challengesand then you maybe pick one to work on. You need to have a plan. There are many other challenges that parents may face as they continue to try and provide for their child. What would you tell a family that is struggling to make progress or has hit a roadblock? There are two things that I think are really powerful. One, you can learn as much from when everything goes wrong as you can from when it goes kind of right. So those times that you have with your child when it’s a train wreck are actually the times when you can get your ‘aha’ moments, which really change your experience the next time. The other thing is that for many sensory kids, their profile is consistently inconsistent and that’s one of the hardest things for a parent to understand. Some parents will get into a softer cycle of behavior and think that everything is fixed, that their kid is all better, and then they get kind of slapped in the face when the cycle changes. Understanding that there is this cyclical nature to the symptoms and challenges that many sensory kids have is a very helpful thing for parents to understand. You talk about two different teams that help provide support for the child. One is essential clinical support and the other is the team at home. How does the support they offer differ and how do they interact with one another to ensure the child gets the care and attention they need? The clinical support is so helpful for parents by providing them real, tangible knowledge around specific challenges. Having that check-in can be really helpful for the parent, but also the child. It’s another way to show our children that we are there to support them. I think what we can do at home is taking what is being done with clinical support, and use those strategies and tools during challenging times at home. It really becomes a great mirror of how to take some of those clinical methods of support and put them to use all the time. As a sensory child becomes an adult, there are undoubtedly some new challenges that arise. How can you prepare your child to make these adjustments? In the earlier years, as you’re working with those core tools of structure, routine and visual aids, you’re really helping sensory kids build executive functioning skills. As they get into middle school, when there’s that natural need for independence, it really becomes this great opportunity to pull back a little bit as a parent and see how they start to manage some of it. The main goal is that you want them to recognize when they hit a difficult situation or experience and you want them to be able to get to that place and say, “What’s my plan” and try to handle it. In your personal work, you help both children and adults. Are the techniques employed similar? Absolutely. I think the core thing around sensory organizing is really breaking it down, reducing any of that external stimuli and then creating that visual aid so you can know what to expect in a situation. That strategy can work for kids and adults alike. So while you’re really supporting a new experience, you’re also hoping to build a habit. The other things that can be used are the power of choice, the gift of fascination and the art of distraction. Those three tools can be used effectively to address a challenging task or a challenging time of day. Do you see the challenges of parenting sensory children changing along with technology and culture? I do. You know, technology really provides some great opportunities for supporting many sensory kids but I still think at the core of it, there has to be a more tactile approach to get kids to really learn the process of making a plan. So I think you have to have a time before you really rely on technology. That’s why it can be so helpful to use some of the hands-on techniques when they are younger so that when they move on to using technology they already have a core understanding of how it works. Have your experiences with other families taught you anything about how to handle the relationship with your own son? Absolutely. I think for me it does a couple of things. It reconfirms what I think are always some of the core challenges for so many sensory kids. Even though there are so many different diagnoses, the challenges are often similar. I think what I tend to be cautious about is thinking that I don’t have to do this anymore. So when I see the power of a small change with a family, it really reconnects me to how powerful this all can be

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NAMI Blog Repost

Tuesday, November 19, 2013 Let’s Connect for Mental Health By Bob Carolla, NAMI Director of Media Relations This past summer, the White House Conference on Mental Health launched a National Dialogue in which communities large and small have engaged in dialogues about mental illness and needs in the mental health care system. NAMI members have participated in many forums, including one held on college campuses and at veterans’ facilities. NAMIonCampus has produced a produced a special toolkit for use with college students and we have launched a new national education program, NAMI Ending the Silence, designed to educate and empower high school students. A New Initiative This week, NAMI introduced a new initiative in partnership with the National Council on Behavioral Health (National Council), called Connect4MentalHealth that seeks to keep moving the National Dialogue forward to action. Connect4Mental Health is calling on community leaders to make mental health care a priority. Commitment is needed not just from the mental health community, but also law enforcement, emergency services, public housing, school districts and others. Efforts will focus on four specific strategies: Early intervention. Creative use of technology. Integration of services. Improved continuity of care. These strategies can help break cycles of hospitalization, homelessness or incarceration. They are community-focused and reflect the need for collaboration. They can help save money in the long run. Support Exists for Greater Priority For too long, mental health care has been “the poor step child” of American health care, even though the cost to the country’s economy is an estimated $300 billion a year. Mental health care receives only six to seven percent of all federal health spending; meanwhile, 40 percent of adults living with mental illness do not receive treatment. From 2009 to 2012, states slashed approximately $4.35 billion from mental health care. Awareness of the need for change exists. A recent poll of 1000 persons indicated that: 82 percent see people living with mental illness as being treated differently than others people because of social stigma. 74 percent claim to know someone who lives with mental health condition. 41 percent believe access to mental health treatment is poor or awful. 87 percent recognize the need to prioritize funding for early intervention. 68 percent believe mental health care should be addressed at both the national and local levels. 91 percent agree that that community can do more to help people affected by mental illness. Despite these figures, one of the most disappointing responses of the past year has been that many states have nonetheless rejected expansion of Medicaid under the Affordable Care Act, which would have covered people who have no health insurance. People living with mental illness are among the largest group of potential beneficiaries from states expansions. We still have much work ahead. Model Programs Play a Role There is no “one size that fits all” in mental health care treatment. Local circumstances will always influence basic strategies. As part of launching Connect4Mental Health, a summit in Washington, D.C. highlighted four examples: Henderson Behavioral Healthcare in Fort Lauderdale, which developed an evidence-based early intervention program that has helped hundreds of adults live an independent lifestyle in supported housing. Vinfen in Boston, which is using technology to encourage more accurate and frequent reporting on medication adherence and other needs, with estimated savings of $3.8 million to the health care system over three years. Center for Health Services in San Antonio, which has partnered with police, firefighters and emergency response teams to divert more than 1,000 individuals living with mental illness from hospitals or jails each month. MHA Village in Los Angeles, which provides continuity of care that increased employment 200 percent while lowering hospitalizations, homelessness and incarcerations. Real-life examples help establish that the vision of new, strengthened mental health care system is not an illusion. It is real and achievable. There is already a foundation to build on—if community leaders are willing to seize the opportunity. Change cannot be achieved without continuing dialogue. It also will depend ultimately on community action. In order to help individuals and families affected by mental illness, NAMI is committed to moving dialogue and action forward for the long haul. Posted by Katrina Gay at 4:53 PM Labels: connect4mentalhealth, ending the silence, mental health, nami, national dialogue, policy,

Another reason that here is the place

Another main reason that Disney World holds some old fears and paranoia for me is that back in 1996, when I was a senior in High School, on a music trip with the chorus, we were here and I experienced prodrome. I'll explain; prodrome refers to a set of symptoms, almost like a warning sign, that happens sometimes years before, sometimes months prior, or even a decade or more earlier than the onset, or breakthrough episode of psychosis. So I'm thinking that since I had some paranoia and overstimulation when I was down here a full three years before my first major break. Now, 17 years later, and many coping strategies through and, of course on medication now, I've returned to one of my places of origin and early onset.

I've used earbuds and my iPod throughout long lines and crowded parks and restaurants to help offset my paranoia and overstimulation. Dr Malhotra said he treated a lady who raised eight children and had schizophrenia herself. She said the only way she was able to quiet the voices consistently was to always have the radio on. So that's what she did and how she coped. 

Mega medication dosages in Disney

Hello from Disney World, the most magical place on earth and also the most taxing for someone with mental illness. This is especially true of someone with psychotic type illnesses. After all, there are stimuli all around you as well as children who need you all the time, small children crying and complaining. 

Oh well, it is what it is. We'll see how the rest of the trip goes. 

Yes, it wasn't that I wanted it this way

Yesterday, I had myself an exceptionally rough day. With having the two children in the morning, by myself, while the wife was at work and feeling paranoid and having disorganized thoughts--but nay, once I headed that off at the pass, I wasn't finished yet. Once she got home, I went off onto some overstimulated jaunts in the prison of my mind. Then it was time to carve pumpkins, and yet again, I was assaulted by the innate rants of my psychotic mind. In and out of bed at this point, I managed to fend off the onslaught until it was time for a restful sleep. Even in slumber, though, my "off switch" wouldn't be tapered. Tossing around just beneath the surface, my mind wouldn't let me be at peace, until the morning, when it all went away. Thankfully, the following day (that being today), I went on beautifully with a wonderful day when I was able to complete all tasks at hand, as well as be outside with my children, and visit my dad at his home. The Alpha, the Tau and the Omega. Just remember, there is always a tomorrow.