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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