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.

Man on a mission in Clifton, NJ (Story from NJ.com)

Clifton man on a mission FRIDAY, SEPTEMBER 6, 2013 BY TERENCE MCGINLEY STAFF WRITER CLIFTON JOURNAL PRINT | E-MAIL CLIFTON — 'Fail forwards, not backwards'... 'The only bad grade is an incomplete.' Drew Horn pictured with a volunteer from Montclair State University's 'Smile Station' celebrating with a resident of an area nursing home. Horn will receive a peer leadership award for his work next month in Hollywood. COURTESY PHOTOS Drew Horn pictured with a volunteer from Montclair State University's 'Smile Station' celebrating with a resident of an area nursing home. Horn will receive a peer leadership award for his work next month in Hollywood. These are just a few of the many mottos used by Drew Horn, the founder of the Turn a Frown Around Foundation and longtime advocate for mental health. To Horn and his colleagues, loneliness is not a simple emotion. It is a condition, an epidemic — an epidemic that can easily be cured. Next month Horn is being honored with a peer leadership award at the SAMHSA Voice awards in Hollywood for his "tireless pursuit to help other individuals address their own mental health issues," according to a press release by SAMHSA (Substance Abuse and Mental Health Services Administration). Horn founded Turn a Frown Around (TAFA) in 2001 while working as a stand up comedian. He describes it as a "benevolent match.com" on a constant mission to seek out and befriend the people who fall through the cracks of society. He is constantly on the road performing at prisons, psychiatric wards, orphanages and nursing homes, places TAFA calls institutions of loneliness. He does not finish a show without giving everybody a hug. "I hear the heartbeat of the lonely every day," he said. "I don't know why I do. I just do." Horn grew up in the Montclair Heights neighborhood of Clifton. His formative years were difficult, he said. His father died when he was 12 and his mother was frequently ill. He never finished ninth grade. Three business ventures failed and he could never hold a job. "I would get hired level-headed then quit when I became manic," he said. At that point Horn was alternating between psychiatric wards and homeless shelters. He even recalls a period of time living in the forest of Mills Reservation. He said he was suicidal and it seemed he had become one of the lonely and forgotten. But his daughter never gave up on him. "She told me I was being selfish. After I made a deal with her that suicide was off the table, after I truly believed that, then I began to take myself seriously," he said. He was diagnosed with bipolar disorder at the age of 42, another step which he said was beneficial. "It helped me label the problem," he said. "I could say to myself 'I'm not bipolar, I have bipolar.'" He was back on his feet performing at comedy clubs and open mic nights. Onstage one night in Montclair something became clear to him. "I realized that the guy in the audience on his third martini doesn't need laughter," he said. Turn a Frown Around was born. He decided to perform strictly for the nursing homes, orphanages and psych wards, giving laughter to the lonely. Drew Horn has not checked into a psychiatric ward in 15 years. Congress established SAMHSA in 1992 as a branch of the Department of Health and Human Services. According to the administration's website, last year 10.6 million Americans reported they did not receive the mental health care they need. SAMHSA started the Voice awards seven years ago. The mission is to recognize television, film and individuals who address mental health respectfully and accurately. Television shows "Monk" and "Law and Order: SVU," are among previous honorees. The Voice awards was first introduced to Horn in "Crazy Enough to Care," a documentary that tells his story, which received an honorable mention at the 2009 ceremony. Director Sheryl Franko made the documentary because "there is no ulterior motive for Drew," she said, adding "he has the deepest form of human compassion." After the success of "Crazy Enough to Care" Horn and Franko travelled to the Netherlands on a tour of nursing homes to prove that a hug is the same in every language. "Connectivity is vital to mental health," Franko said. "What Drew brings is universal." A few years ago SAMHSA established the peer leadership award Horn is receiving in September. NFL Wide Receiver Brandon Marshall is among past winners. "We decided to recognize certain individuals that have made significant improvements in not only their own lives but the lives of others as well," said Carleton Spaeth, project manager of the Voice awards. "Drew is one of those people." Horn is far from fulfilled, however. Recently he has been working on establishing smile stations, hubs of connectivity where the lonely can find forever friends. In addition to being a 24-hour support group, every smile station sponsors an institution of loneliness. Montclair State University was the first college campus to establish a smile station. There are 40 volunteers who visit the Gates Manner nursing home in Montclair once a week. Each volunteer befriends a resident for 20 minutes, but they "always stay longer than that," said junior Chelsea Durocher, president of the MSU smile station. Durocher is starting Compassion Coffee House, a series of weekly events at campus hot spots sponsored by the smile station. Her goal is to "gather young thinkers to think compassionately," she said. She said she's hoping to get to 250 members by the end of the year. There are smile stations at Delaware Valley College and the Seymour Town Library in Seymour, Connecticut. Ten nursing homes scattered throughout the metropolitan area have established stations as well. More are in the works in New Jersey and Georgia. TAFA has more than 100 registered forever friend volunteers. The scope is widening, the message spreading. These are the seedlings of Horn's broad vision. They are footprints, he said, from his never-ending journey to show every lonely and mentally ill person that there is somebody out there who cares. "It took me a long time to figure out that I can offer something in this world," he said. "Now I know I can help people find who they are so they can accept themselves." Getting honored at a Hollywood awards ceremony might be a culminating moment for some, but not Horn. "Don't tell me I have done a good job," he said. "I have only done a good job when there is a smile station in every city in the country." He plans to approach the Voice awards as a platform to launch from and a place to network with influential people. "People don't care how much you know until they know how much you care," Horn said. On Sept. 25 at Paramount Studios in Hollywood he will be limited to just a two minute speech. Chances are he will find a way to fit plenty of those adages in there. Email: mcginley@northjersey.com - See more at: http://www.northjersey.com/news/222626601_Clifton_man_on_a_mission.html?page=all#sthash.bJO9j95z.dpuf

Blog for the removal of certain medications (NAMI.org repost)

Long-term Recovery: More Options, Better Treatment Needed by Kathleen Vogtle, NAMI Communications Coordinator Dr. Thomas Insel, NIMH Director weighs in on study results that, for some, may turn age-old thinking in the mental health field on its head: long-term recovery in schizophrenia may not necessarily include taking antipsychotic mediations. Insel is very clear that he is not negating the benefits of popular and even “atypical” antipsychotics. However, he states that while these medications are largely helpful for those experiencing their first psychotic episodes, their reliability decreases over time. Insel illustrates his claim based on a recently published finding by L. Wunderink in JAMA-Psychiatry. The study followed 103 people with schizophrenia over a seven-year period. After six months of remission, the participants were randomly selected to either wean off the medication, or to continue with maintenance treatment. The results were, at first, predictable. Those who were taken off the medications “experienced twice the relapse rates in the early phase of the follow-up.” Within a few years, these rates evened out, and by the conclusion of the study, a remarkable trend was revealed. Among the 103 participants, the group who had discontinued the medications had achieved a 40.4 percent “functional recovery rate,” as opposed to the 17.6 percent who had continued to use the antipsychotic. The results of the study, though, should not call into question all preconceived notions of how to treat schizophrenia. Instead, Insel believes this is an opportunity to reframe and expand upon this knowledge. He urges a more comprehensive approach: for some, antipsychotic treatment is a necessity; for others, a combination of medication and psychosocial treatment, such as Cognitive Behavioral Therapy (CBT) might prove most effective. Still others may be most productive with no medication at all. However, it is important to assess the potential risks involved in changing any treatment or medication regimen. It is up to the individual and his/her health care provider to decide on the best course of treatment. Above all, Insel states, the term “schizophrenia” was defined a mere 100 years ago, and first generation medications developed only 50 years afterwards. This research, then, is a reminder of how much is still to be learned about this mental illness.