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Tonight's the night! April is Autism Awareness Month, and as such, we're proud to invite you to attend our Town Hall Meeting, an information-packed Q&A Gathering. (Be sure to Reserve Your Spot on Facebook.) If you have questions about autism, you must attend this meeting. This free question and answer session will feature an expert panel, providing you and your family with insights, information, and inspiration.

 

TONIGHT! Tuesday, April 1 from 6 - 8:30 p.m.

Seacoast Church West Campus
2049 Savannah Highway, Suite H
Charleston, South Carolina 29407

 

Here's a partial list of panelists (there will be many more!):

- Dr. Jane Charles, Developmental-Behavioral Pediatrician, Professor of Pediatrics, Medical University of South Carolina (MUSC)

- Dr. Frampton Gwynette, Assistant Professor of Psychiatry Medical University of South Carolina (MUSC), founder Project Rex: MUSC Autism Spectrum, children's autism treatment program

- Walter Jenner, MS, Psychologist, Autism Education and Outreach Coordinator, Medical University of South Carolina (MUSC)

- Laura Carpenter Ph.D., Associate Professor of Pediatrics, Medical University of South Carolina (MUSC)

- Nicole McClain, Trident Academy

- Tripp Ritchie, Executive Director of Lowcountry Autism Foundation (LAF)

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20130210201203LightItUpBlue-logoPsst! World Autism Awareness Day is tomorrow, Wednesday, April 2.

Want to do your part and Light It Up Blue for Autism Awareness?

Register as an advocate with Autism Speaks' Light It Up Blue campaign – whether you light a building or light up someone's day, you'll be making a difference for autism families!

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From LIUB.AutismSpeaks.org:

Each April 2, Autism Speaks celebrates Light It Up Blue along with the international autism community, in commemoration of the United Nations-sanctioned World Autism Awareness Day. Light It Up Blue is a unique global initiative that kicks-off Autism Awareness Month and helps raise awareness about autism. In honor of this historic day, many iconic landmarks, hotels, sporting venues, concert halls, museums, bridges and retail stores are among the hundreds of thousands of homes and communities that take part to Light It Up Blue.”

FREE Autism Townhall Meeting on Tuesday, April 1 (no joke)!

GC3 7630Join us for an Information Packed Q&A Gathering; be sure to Reserve Your Spot Today!

If you have questions about autism, you must attend our upcoming townhall style meeting. This free question and answer session with an expert panel will provide you and your family with insights and latest information.

Our panel will include many professionals. Here's a partial list of panelists (there will be many more from Lowcountry Autism Consortium resource partners):

- Dr. Jane Charles, Developmental-Behavioral Pediatrician, Professor of Pediatrics, Medical University of South Carolina (MUSC)

- Dr. Frampton Gwynette, Assistant Professor of Psychiatry Medical University of South Carolina (MUSC), founder Project Rex: MUSC Autism Spectrum, children's autism treatment program

- Walter Jenner, MS, Psychologist, Autism Education and Outreach Coordinator, Medical University of South Carolina (MUSC)

- Laura Carpenter Ph.D., Associate Professor of Pediatrics, Medical University of South Carolina (MUSC)

- Nicole McClain, Trident Academy

- Tripp Ritchie, Executive Director of Lowcountry Autism Foundation (LAF)

Event Details: Tuesday, April 1 from 6 - 8:30 p.m.

Seacoast Church West Campus
2049 Savannah Highway, Suite H
Charleston, South Carolina 29407

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Tune in for LAC's Local Media Appearances for Autism Awareness Month!

 

  • Monday, March 31 (two LIVE tv shows): WCSC TV 5 for the Noon Show with Bill Sharpe, and WCBD TV 2 for the Noon Show with Josh Marthers
  • Tuesday, April 1 (two mayoral proclamations and TV show taping): 10:00 am Mayor Keith Summey/Office; Autism Proclamation Signing; 1:45 pm, WCSC TV 5, Bounce Around Charleston; 2:15pm Charleston City Hall; Mayor Riley, Autism Proclamation Signing
  • Thursday, April 3 (one LIVE radio show, one LIVE tv show): WYBB-WCOO 105.5 FM for the 7:30 am Radio show with Laura Lee (and Lowcountry LIVE at 10am); WCIV TV 4's 10:00 am Show with Tessa Spenser
  • Bounce Around Charleston air dates on cable stations Comcast 213 and Home Telecom 113 are as follows: 8:00 pm Friday, April 4; 7:30 am, Saturday, April 5; 12:00 pm Sunday, April 6

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ID-100123463Save the Date for a Zumbathon®!

When: Saturday, April 26, from 10 a.m. - 1 p.m.

What: A Zumbathon® to support the LAC's free, annual Autism Forum

Where: Trident Academy Gymnasium, 1455 Wakendaw Road, Mt Pleasant, SC 29464

Who/Why: Bring the whole family and shake your tail feathers to support the LAC!

How much? $10 per participant. Kids under 5 get in free, and children over 5 may dance for free with a sponsor equal to or greater than $10. Food and drinks will be provided free of charge by Kickin' Chicken. Jump castles will be provided by Special Needs Planning LLC, and water and snacks will be provided by the Principal Financial Group.

Sponsor a child: There will be a per minute sponsor for kids to dance: 25 cents per minute, with a minimum 10 minutes of dancing (equal to a minimum of 4 sponsors, or 40 minutes of dancing).

The child with the highest donations at the end of the event will win an iPad Mini on behalf of LAC!

All proceeds will benefit the Lowcountry Autism Consortium and the Forum, which will take place on October 4, 2014 at College of Charleston.

Questions? Contact Niki Leiva at Trident Academy; (843) 884-7046

 

Image courtesy of imagerymajestic; FreeDigitalPhotos.net

login-ui-draft-a19-year-old Charleston local and Tufts sophomore Danielle Feerst has a lot on her plate. She's the founder of AutismSees, a new company founded to develop iOS applications to support individuals on the spectrum.

 

As she recently wrote, “I'm studying for exams, and pitching my app … at the 2014 Autism Speaks Investment conference for the chance to win $10,000! [My team was] selected to go to the conference and bootcamp at Google's Mountain View office for free. Furthermore, my company made it to the finals of the Tufts 100k new ventures competition. We are pitching on April 7-8, and if we receive a prize or placement, we could hire a researcher and use the money toward web-based programs and software.”

 

Read on to learn more about this exciting new company and its intrepid founder. (While this interview is longer than usual posts, we feel it shares how young developers are finding new ways to meet needs and motivating themselves as well!)

 

LAC: So, tell us about how all this began – what was the inspiration for AutismSees?

 

Danielle Feerst (DF): Well, I'm a sophomore at Tufts, and I went in thinking that I wanted to be a pediatrician. I was researching autism, and I was fascinated by lack of social connection, the lack of eye contact, for example, and I wondered, “How can we fix that?” And one day I was in a coffee shop and I wondered: what if I could create an app to help higher-functioning teens with autism interact and learn some speaking skills?

 

And at the same time, I was part of an entrepreneurial fellowship, so I was challenged to come up with an idea for a viable business. At first it was just this one app, but now I've come up with a sustainable business idea, a for-profit/non-profit entity. So, I applied what I had done in class, and I received feedback from friends and mentors in child development. They liked my business concept, and I was learning so much that I changed my major to engineering psychology (or human factors engineering).

 

Now, I'm taking coding classes and doing a business minor too; [AutismSees] has become this powerful driver in my life. I want to see this app [iPresentWell] have a lot of impact, but it's already had a huge impact on me.

 

LAC: In your own words, tell us: what does the iPresentWell app do, and who does it help?

 

DF: With iPresentWell, you can practice different aspect of self-presentation. It's tailored to higher-functioning individuals on the spectrum. We wanted to target an audience that plays with apps and tech a lot; we wanted something that would help these kids be self-motivated to practice skills. With iPresentWelll, they can get rewards tailored to their interest while they're learning eye contact and speech.

 

With the app, the user can import texts – such as a speech for a class – and then they're able to practice making eye contact with a virtual face. The face is a default right now, but with software development, users could actually take a picture of someone they know and import that, giving them a familiar face to blink and make eye contact. Our goal is for this to be as realistic as possible. Also, when they're reading their speech, they'll be cued to look up at the face, and they'll also be able to use a camera so that while they're practicing, they can record a video of themselves. That video can then be exported, perhaps to their therapist, their mom, their friends.

 

We spent a lot of time on the design, and I wrote a whole research paper on the features. The first thing asked was, “How can we help kids with eye contact?” And I thought, they're relating to technology so well, so how can we put a face on a tech platform? Then, the second part was: “How can we help them with relating their thoughts fluently?”

 

I presented this idea to researchers at MUSC, and Dr. Laura Carpenter suggested that we use speech-to-text software to allow for open-ended dialogue practice. That way, we could record answers, and export those dialogues to a therapist or to a clinician. We want to implement that feature, but the technology is challenging and expensive. So for now, for the beta version, it just allows you to import articles for reading. In the future, we would love to move to open-ended dialogue.

 

Right now, the app is on Testflight, a beta testing platform, but it's going to be available on iTunes soon. With the current app, users can also set a timer for reading aloud, which cues a visual pop-up icon to remind them to look up toward the top of the screen; that's when they're making eye contact. And the eye-tracking count gets recorded to the device. This way, you can monitor progress, set a goal, and be rewarded with something fun.

 

Our hope is that people would want to use this not just because it would help them, but because it's fun, and because they can get rewarded. We did a survey as to what rewards would appeal to our target users, and we heard things like, “50 cents off iTunes, free movies, free games, and Nike discounts.” So we're looking to implement a Kiip virtual reward system as well.

 

LAC: What's the latest news when it comes to the app's development?

 

DF: The beta version has a lot of our main features, and the goal is to get the beta up to iTunes by April 7. At present, AutismSpeaks and our mentors are reviewing it. We also haven't implemented eye tracking yet, because we really want to make sure it's working before we release it. That's a huge issue in the autism community, having apps that don't work as they should. I want this to be a robust solution. And if we do win the Tufts 100k, I would use that money to put a full-time developer in our team. That would allow us to add eye-tracking and advanced technology, and also create different versions quickly. We also have a goal to develop a back-end version of the app for clinicians, and we'd possibly like to expanding to other platforms, such as Wii and Xbox.

 

LAC: What's been the most challenging part of developing your own company? The best part?

 

DF: Well, the most challenging part is having all of these ideas and feeling really passionate, and also being in school and being 19! It's something I love and I really want to see it happen, so I'm educating myself as much as possible. Also, a lot of what I've done so far I've put in my own money for. I used Indiegogo (a crowdfunding platform) to start, and raised over $1000 for the app idea – and we didn't even have a prototype at that point! I've had so much support from friends and community.

 

The reward? Well, I've learned so much, met so many people, made so many amazing connections. The autism community is an amazing community, so collaborative … it's different than just developing the next SnapChat. There's an emotional aspect to it, to meeting moms and parents. If I had a dream job, it would be this. LAC: How can families find out more? DF: Families are welcome to visit the AutismSees website, and contact me and my team at This email address is being protected from spambots. You need JavaScript enabled to view it. .

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20130210201203LightItUpBlue-logoApril is Autism Awareness Month, and World Autism Awareness Day is coming up on Wednesday, April 2, 2014. Learn more about how you can do your part to Light It Up Blue for Autism Awareness via Autism Speaks.

Since March is National Disability Awareness month, it's fitting that LAC connected with Mindy Allen, local Charleston, SC founder of Special Family Resource, a forthcoming online resource guide designed to serve local special needs families. Note that while LAC focuses on serving the autism community, Special Family Resource is intended for all special needs families in our area.

SpecialFamilyResource

LAC: First, tell us a bit about the project itself – what is Special Family Resource?

 

Mindy Allen (MA): Special Family Resource bridges gaps between special needs organizations, providers, and families. Our local [Charleston-area] providers are busy; they're providing the service, and often, they just don't know the resources. So we hope that parents can be pointed [to resources, through us], instead of having to do all the research themselves. Special Family Resource is talking about the mom, the dad, the sibling, so that providers can concentrate on individual with special needs. We ask, “What can we do for the family?”And the main thing that [Special Family Resource] does is provide a network. There are a lot of great resources, yet when I talk to program directors, a lot of times they are unaware of resources just down the street! It's unreal.

 

So it's providing a network, and making it more accessible. It's about families building friendships. That gets the parents out of isolation, and then they can fight the depression that many special needs families face because they are so isolated. This is a hopeful way to deal with any diagnosis … it's about getting people into those networks, so they can receive supports.

 

LAC: How did the idea for Special Family Resource germinate?

 

MA: The vision starts from our family's experience, and then it became bigger because I saw other needs to address. My son received an autism diagnosis at age 2, and we later found out that he had lead poisoning from all the renovation work we were doing on our historic home. He was treated for the lead poisoning, and the same agency reversed his diagnosis at age 5. And that day I promised myself, “I'm going to do something. I'm going to pay it forward.” And now, six years later, here I am.

 

Our son is doing great, developing typically, playing all-star sports, enjoying friendships. In some ways, it's like it never happened, but to me, this is where this [the Special Family Resource] is coming from. The day I got the diagnosis, I saw a group of boys riding bikes, and I thought, “My son will never have friends.” I collapsed on the floor. But there is hope for [special needs] families.

 

LAC: What's the time frame for the launch of the online database and resource guide?

 

MA: We can build out the website once it gets funded. I'm hopeful that I can get in front of the right people to help, and once we built it out … well, I have a lot of the information, so it would only take about a month to build it out. We just need to raise the funds.

 

LAC: What will be included in the online resource lists? How will they help?

 

MA: The Master List of Tri-County Resources … will enable the community to "connect the dots" with the networks, while the Provider section … will allow families to view their options for their child's care. After construction, the site will be an information highway of hope for [special needs] families. Our resource categories are: recreation, family support, transition, financial, physical needs/aid, emotional. Our provider categories are: medical, therapists, financial planning, legal, education, and miscellaneous. For example, miscellaneous might be a barber who specializes in cutting hair for sensory disorders. (They do exist!) There will be a database form for people to submit resources as well.

 

LAC: How will parents know if they need this guide? What are some of the key characteristics of those you seek to serve?

 

MA: As I started to create the master list of resources, I realized that 1 out of 3 single moms in the nation are reporting members with a disability. So those moms are my main target with the resource. Charleston also has a significant Hispanic population, and many struggle with the language barrier … so really, a single, Hispanic mom who has a child with special needs!

 

My experience was that we got the diagnosis, we left the doctor's office with nothing, just a sheet of paper with a diagnosis on it and jargon. We went home and told our [extended] family, and we got a terrible response from [certain members]; that was almost as debilitating as the diagnosis. That's why I offer the PDF resource designed for the time of diagnosis.

 

So the mom is dealing with all that, and then maybe their husband leaves, so then that mom needs help getting to the dentist, getting job placement, resolving financial problems …. And I thought, “If I'm going to build out a resource list, I need to dig deeper so that that single mom is taken care of, because I don't know how she makes it through the day.”

 

Special Family Resource will [also] advocate early intervention to promote potential that can be addressed in early childhood years. According to the Rauch Foundation, 85%-90% of brain development happens during a child's Pre-K years.

 

LAC: How can families find out more?

 

MA: You can Like us on Facebook and visit our website; we appreciate the help in spreading awareness. It's overwhelming to think what good could come out of this resource …. Once we begin collaboration, incredible things can happen.

***

CGM Bio scaled downCaroline McGraw is a would-be childhood paleontologist turned writer, digging for treasure in people and uncovering sacred stories in ordinary days. She writes about choosing love, losing fear, and finding home at A Wish Come Clear. Visit and receive free copies of Your Creed of Care: How to Dig for Treasure in People (Without Getting Buried Alive) and Love's Subversive Stance: Ground Yourself & Grow in Relationship.

Screenshot from 2014-03-04 103644How can we help individuals with autism learn to eat right and exercise? LAC spoke with Chris Fink, a Program Coordinator at the Department of Medicine at the Medical University of South Carolina, to hear his insights on autism, nutrition, and health.

 

LAC: Tell us a bit of your story -- what inspired you to begin working with individuals with autism?

 

Chris Fink (CF): It really started in grad school, when I took an adaptive phys ed and sports class. It really opened my eyes to how physical activity could be a form of therapy. I explored and researched different disabilities, and how exercise could positively impact an individual's quality of life. I found that physical activity was used in a number of different treatment regimens, but it was not used or addressed at all with others.

 

Then a friend of mine, a PT who works exclusively with young adults with autism, asked if I might consider meeting with a young man named Jonathan. He was getting overweight, and he was interested in playing catch with a buddy. So I met with his mom, then I met with him, and I worked on finding activities that he enjoyed. First it was being his buddy and having fun, then slowly I tied a nutrition piece into it.

 

He was very picky eater, and so I slowly got him to try new foods through talking things up and sharing how I eat, or my friends eat … just casually putting it out there. His mom called me, saying, “Jonathan ate an apple yesterday!” When I learned more about autism, I realized that that's a big deal, he's stepping out of his comfort zone.

 

LAC: Tell us about the fitness/nutrition study you did last summer -- what was the process like? What did you discover?

 

CF: I did an independent study in graduate school focused on autism exercise and nutrition, and I learned a tremendous amount. I felt like I was armed with a bunch of information, and I was motivated. So I went to director of Wellness Center MUSC and asked, “What would you think about a program that specifically helps individuals with autism?” The response was, “That sounds good, but how would we pay for it?” So I wrote up a plan, and I kept going in there, hounding, and the director eventually gave in to a pilot study.

 

So I put together a pilot study group, the Piece It Together Program, with 4 young men and 2 young women, all between 18 and 23 years of age. We met twice a week for 90 minutes, for twelve weeks total, and it was incredible. It changed my life. I realized that I was capable of making a positive impact in other people's lives.

 

We had a registered dietitian, myself, and an intern with a physical education degree. Before I started, I was certified in Behavior Instruction for autism; I wanted to be able to communicate with participants and their parents. In each meeting, we'd start with a nutrition intro, talking about what we ate, what we should eat, and how to read food labels. Each time, we'd address one point, though, not throw everything at once. And then for the second half of the time we'd do exercise.

 

We tried to expose them to all kinds of exercises. My ultimate goal – beyond improving coordination and motor skills – was to expose these individuals to physical activities in hopes that they would find something they liked and would do on their own.

 

Before we began the study, we did pre-testing with our participants; for example, sit-ups, push-ups, a mile run. We measured BMI and body fat. And when we did post-testing, the results were super-encouraging. Everyone improved, in some cases, people dropped body fat percentages from 2-3% … normally, we'd expect to be looking at fractions of a percent!

 

For our exercise, we did yoga and cardio; we went to a climbing wall; we went to a challenge course at our county park that requires you to use teamwork; we did stand-up paddle-boarding, and a lot of interval and circuit training … that was helpful when attention spans were short.

 

Another key component of each meeting was that, during cool-down, we'd have a take-home message, and we'd get feedback. I'd ask each person, “What did you enjoy or dislike? What are we going to do between now and next time we meet?” For example, one week it might be that instead of eating Lucky Charms, why don't we try a different cereal? Or maybe bring in that Lucky Charms box, and we'll look at the nutrition label together.

 

I really made an effort to befriend each person, to have this be fun. I wanted to be their buddy, someone that just happened to know a lot about exercise and nutrition. It took a while, but eventually they'd be sending me text messages on a Tuesday night: “I ordered grilled chicken instead of chicken fingers!”

 

LAC: What was the nutrition component like? How did you work on making those changes stick over time?

 

CF: Well, you don't want to set yourself up for failure, or expect short-term change to have a long-term impact. So it's really important to be realistic, to start small. Maybe it's one snack replacement. Maybe it's water instead of Coke. Small things.

 

We were fortunate to have the program at the Wellness Center, because we had nutrition visuals showing how much sugar is in common items. Having a visual sinks in differently than if I just say “There are 30 grams of sugar in that drink.” That said, there's a fine line of not throwing too much at people, but throwing in basic, hard-hitting stuff intermittently. A lot of these kids were on track to be obese, and the older these kids get, the more they fall through the cracks.

 

Fortunately, young adulthood is a perfect age to do this program. [Participants] are already transitioning from high school to a trade school, job, or college. They're already in transition, so it was a good time to put these changes on their plate without being overwhelming. In the end, all 6 wanted to do the program again.

 

Plus, there are some benefits to working with this population; for example, they're more likely to stick with it than the average young adult. If it's part of their routine, there's a good chance they'll stick with it! More importantly, they saw changes firsthand, so they understood that the program was working.

 

By the end, most of our participants had almost completely eliminated soda from their diet, and that took a lot of work. It was a taper-down. We went from 4 sodas a day to 3 a day the next week. It was making small changes that I knew they would stick with. They also learned that their bodies function better with water than with soda.

 

LAC: What are some of the obstacles parents and families face when it comes to helping young adults with ASD with their fitness?

 

CF: One big obstacle for parents – and I'm guilty of this as a parent as well – is that when you find something that works, you stick with it, even if it's not the best or the healthiest option. Being brutally honest here, complacency plays into it.

 

Successful [program] participants would always have family support behind them. It was about getting parents to buy into making some changes and following through, not taking shortcuts at home.

 

The parents came to the first week of the program, and we did a parents' meeting, sharing what we had planned, asking them, “What do you think?” We got feedback right out of the gate, and we could prepare them for what we were going to do, and what needed to happen when they're not [at the program].

 

Another big obstacle was finding the right exercise for each participant. Every one was overweight, and you get to a point where everything is hard, so finding the right exercise was important, as well as finding something that the entire family could do together.

 

It could be as simple as, “Hey, this week, I want you to take your dog on a 30-minute walk every night, and have a family member go with you.” We tried to give suggestions, to find an activity that the parent can do with the child, be it walking, biking, or swimming. Getting the parents to lead by example was a big deal.

 

LAC: Were there particular activities that really seemed to work well for the group?

 

CF: I believe there's an exercise out there for every person; it's all about finding the right activity for each individual. One guy really liked stationary cardio equipment, and now he's at the wellness center on his own, every Tuesday and Thursday, working out.

 

All the water activities were a hit. I'm not sure if it was from a sensory perspective, or if it was just fun to be in the pool. Stand up paddle-boarding was also a hit, to my surprise. It was the last thing we did, and every one stood up by themselves! You could see that confidence was just beaming out of them; they realized they were capable of more than they knew.

 

The challenge course – when we were all forced to work together – was also a hit. But a lot of the higher-intensity activities you do for a longer duration, like the 1-mile run … well, nobody was too excited about that. Even so, it wasn't boot camp; we really made an effort to make it fun. If someone was tired, I'd jump in, saying, “I'll walk with you, I'll run with you.” That helped curb anxiety; people knew they were not out on an island by themselves.

 

We also tried to tie music in; we let [participants] pick the music every time. I really brushed up on my Justin Bieber.

 

LAC: Are there specific interventions or environments that work better for fitness and health for the ASD community? If so, tell us about them.

 

CF: With this population, the individual can only do so much for themselves. The average 22-year-old can go grocery shopping, can drive themselves to the gym. But here, Mom and Dad are probably grocery shopping, and the individual probably isn't driving; they have to find something they can do without excuses. There's a level of accountability that I had to pass on to the parents. And the parents did buy in, especially after they started seeing some results. Then they'd get excited about it, because they'd never seen their kid ask for an apple.

 

It was also important for individuals to see their peers doing different things. They're going to listen to their peers in a different way than they may listen to me. If one of their peers enjoys avocados or tried an avocado, they're a little more likely to try it, to be adventurous. And in exercise, they fed off each other, and their social skills blossomed. Buddies were made, and now they're friends.

 

LAC: How did you select participants for the pilot program?

 

CF: For the pilot, we were specific on focusing on high-functioning individuals. We interviewed based on recommendations from a mentor group. We didn't want too much unpredictable behavior or aggression, mostly because this was a pilot study. We wanted to see what works and what doesn't before we opened it up to a broader spectrum.

 

LAC: Are plans in process to do another program?

 

CF: We do have plans to do another program! We're in a grant process, seeking funding right now. But MUSC has agreed to carry the program forward as long as we come to the table with a grant. They'd really like to see it go forward.

 

***

CGM Bio scaled downCaroline McGraw is a would-be childhood paleontologist turned writer, digging for treasure in people and uncovering sacred stories in ordinary days. She writes about choosing love, losing fear, and finding home at A Wish Come Clear. Visit and receive free copies of Your Creed of Care: How to Dig for Treasure in People (Without Getting Buried Alive) and Love's Subversive Stance: Ground Yourself & Grow in Relationship.