Wrapping up our Skills and Moving On at UBelong

While today is the last day of UBelong programming, we know that the impacts for each of us will go on and on.  We wrapped up by reinforcing the skills from earlier in the workshop (our confidence through STEPS, Rehearse Your Responses tools, and bullying prevention tools).  Everyone got a chance to say out lout how important it is to be understood and  make new friends.

Our program closing ceremony included previewing the video we’ve been working hard at, as well as a ritual that reminds us all of how we are all important parts of the survivor community.  We may be leaving Providence tomorrow, but we will all take the lessons and support with us!

UBelong Participants Learn that Bullying is Never OK

What a day at UBelong!  We experienced a large group lesson from bullying expert, Katy Pearson, complete with a skit and small group breakout sessions to reinforce this important content.

Today we learned the at bullying is never okay, and that both the target and the bystander in bullying situations can do something to change things.  Practicing these things helped us understand how to respond in a bullying situation.

Mentors from the Young Adult Workshop visited each small group to share their stories.  Hearing how they felt when they were the same age as UBelong participants helped to give perspective and inspiration.

Everyone was very excited to keep working on our video, expressing ourselves in even deeper levels.  Stay tuned for the exciting reveal of this video where participants tell everyone what they ” want you to know!”

Chris Gilyard Describes her Journey – “Walking Through Ashes”

Chris Gilyard, featured speaker at today’s World Burn Congress general session, uses the words “Walking Through the Ashes” to describe her burn injury experience and her journey through years of recovery.  Thirty five years ago, burned in an auto accident at the age of 17, she suffered 2nd and 3rd degree burns on 21% of her body, with her face having some of the deepest burns.ChrisBlogpic

Chris explained that, although the physical pain and recovery in the burn center was intense, the emotional healing from her injuries was equally devastating.  She described how, upon first seeing her reflection in the mirror, she thought ” I don’t look like a girl anymore…..who is ever going to love me?”

Upon being discharged from the security of the burn center, Chris explained, she had no support groups, websites, camps, school or social reentry, or social skills training available. They simply weren’t available at that time.  She experienced the humiliation and pain of pointing, laughing, inappropriate questions, and hurtful comments.  And although her family was loving and highly supportive, they did not have the skills or resources to handle the difficulties of going out in public and responding to the reactions of others.

Chris stated, ” I felt so alone”.

Chris compared the available resources and assistance she had during her journey, and what she wouldn’t have done to have the resources that are offered by the Phoenix Society today, such as SOAR, for a peer supporter who has “been there” like she had; for social reentry skills, such as the Phoenix Society’s “Beyond Surviving:Tools for Thriving”, to help with going out in public; and for a school reentry program such as Phoenix Society’s Journey Back, to help with the challenges of returning to school.  Although she didn’t have these tools, Chris did rely upon the support of family, friends and therapy on her journey to recovery.

She described the breadth of her journey, including a pivotal point where another family member experienced a severe burn injury, and how this motivated her to pay it forward by becoming a Burn Support Representative at Regions Hospital Burn Center, in St. Paul, Minnesota.  She stated she learned  “the journey is much easier to do with someone by your side.”

Today, Chris is married with 2 sons and works in private practice as a Licensed Marriage Family Therapist in Minnesota, offering caring and healing for those struggling with burn and other types of trauma.

Phoenix Society for Burn Survivors continues to be the central hub for resources for everyone affected by burn injury, offering peer support – SOAR (Survivors Offering Assistance in Recovery), online learning courses, online support chat services, the Journey Back resource for school reentry, and many other educational tools and resources so that burn survivors and their families can live productive and fulfilling lives.  No one has to travel the road of recovery alone.  More information is available for these resources at http://www.phoenix-society.org.

UBelong Participants Experience Expressive Art!

Peace Love Studios helped kick off UBelong programming with Expressive Art!

Our two oldest small groups got to actually travel to the Peace Love Studios to work on their masterpieces! The two younger small groups enjoyed a visit from Peace Love staff here at the Convention Center.  Everyone had a chance to “express themselves” individually and be a part of something much bigger, too – a piece of group artwork!

We’re all very excited to have started work on our own UBelong video, which is also all about expressing ourselves.  In it, everyone at UBelong has a chance to tell you what they “want you to know”.  Through this week, we’ll talk a lot about being BRAVE, and today’s video content sure started to show off how brave all these UBelong participants really are!

Parent Workshop Addresses the Needs of the Entire Family after Burn Injury

The parent workshop was held today for parents coping with burn survivorship within the family. The workshop provided information, perspectives, expert advice and open discussion for the attendees. Aimed at both parents of child/teen survivors as well as parents who are themselves burn survivors, this workshop addressed the impact that burn injury has on children, teens and family.

Parents had the opportunity to explore what their family had experienced and gained useful information and tools to manage the future.

A facilitated support group follows this session to allow for further discussion. The parent support group addresses aspects such as guilt and children’s behavior challenges. Hearing that you are not alone, connecting with each other, and learning about recovery helps parents prepare for the next stages of their family journey.

Kids in Childcare Enjoy the WBC Experience, Too!

The smallest survivors and family members got a taste of belonging and fun today, too!  Our childcare participants, ages infant through 6 years old, enjoyed getting to know new friends and supportive caregivers.  They got to explore a lot of games, active play, and more.

Our UBelong staff also brought components of therapeutic programming to the kids.  Today, childcare participants got to do a self-portrait (with help for the littlest ones), and describe how each part of themselves was useful, valuable, beautiful, and special.  This helps with healthy self-image and talking about how we are all different and the same.  As every member of the family is impacted by burn survivorship, so too, does the Phoenix Society support and meet everyone where they are at.

UBelong Participants – Come Get to Know Us!

UBelong participants, Express Yourselves!  The theme of this year is all about expressing who you are and what you think.  Each person’s unique qualities, views, and strengths are here to be celebrated!  Come and get to know your new friends at the UBelong table tonight at the kickoff event.  Staff will have group and individual activities ready to help everyone meet new friends and feel comfortable and get ready to express yourself!  Come find us by the Rotunda.

Young Adult Workshop – Where are You At? Where Do You Want to Go?

Today’s Young Adult Workshop was all about where you’re at and where you want to go. YAW focused on a range of topics faced by young adult survivors, from independence and celebrating who you are; to finding your personal journey and where you want to be. This workshop brought together 18-25 year-olds who are ready to support one another, have fun, and talk about where they are going next.

Starting today, in the first part of the Young Adult Workshop, survivors talked more about the “personal journey” (celebrating who you are, but also getting to who/where you want to be). Our time together continues in activities Thursday evening, workshop part 2 on Friday (lunchtime for registered workshop participants), and during support groups (support groups open to all young adults).

Today, in two separate breakout tracks, we looked at confidence, goals, and support. One group focused on becoming role models within and for the burn survivor community. Look for them mentoring at UBelong, speaking at Open Mic, and reaching out to fellow conference survivors!

Finding Connection 50 Years after the Fire

By Amy Acton, RN, BSN, Executive Director

As the anniversary of our injuries approach, some of us do anything we can to distract ourselves and avoid the memories, others celebrate their “new birthday”, and eventually for some, the day comes just like any other.

Page 3 -Alan Breslau with childToday is the 50th anniversary of the Mohawk Airlines Flight 121 that took off in Rochester NY on July 2, 1963 and crashed in a thunderstorm.  Seven people were killed and 36 people were injured.  Alan Breslau was on that plane and his path of healing lead to the founding of the only national burn survivor organization in the country, the Phoenix Society for Burn Survivors.  It is an important anniversary for all of us because out of this tragedy rose the Phoenix Society and all the amazing support that has followed for the last 35 years.

Yet the anniversary would have passed quietly had a fellow Mohawk passenger, who was preparing for his 50th burn injury anniversary, not reached out to remember and connect with others who were there.  He stumbled upon an article that mentioned the Phoenix Society website at the bottom and looked us up, quickly realizing that a fellow passenger, Alan Breslau, was the founder.  Steve was burned and never met Alan after the accident, nor did he know that the resources for burn survivors and their families existed.  I am sure they will have a powerful conversation as they connect some 50 years later to remember and I also hope they celebrate all that they have accomplished over the past 50 years.  I myself will be celebrating with them in spirit today!

Media Stories Increase Smoke Alarm Awareness – But Some Confusion

Recent Media Stories Share Only Part of the Story on Smoke Alarms

On Sunday, March 24, the national newsmagazine TV show, Dateline, is scheduled to air two segments about smoke alarms.  Here is a teaser of what will be aired.

http://todaynews.today.com/_news/2013/03/22/17403247-rossen-reports-kids-can-sleep-through-smoke-alarms-experts-say?lite

The first segment originally aired on TODAY in October and there were many concerns within the fire service about the information given in that report.  The International Association of Fire Chiefs (IAFC) issued a release urging its members to educate themselves on the issue, and criticizing TODAY for dispelling “half-information.”  CPSC and the major manufactures also all provided statements recommending for optimal protection, families should use both types of technology in their home. We are told that Dateline’s re-airing of this piece will re-emphasize how ionization technology works well in most fires and photoelectric tends to work faster in slow, smoky fires. Yet we want to make sure that any partial information is backed up with facts.  The upcoming segment focuses on photoelectric smoke alarms, and includes an interview with a woman who lost family members in a fire, a demonstration with Don Russell from Texas A&M Universityand an interview with the CPSC.

The second segment will focus on smoke alarm research conducted at National Children’s Hospital in Ohio regarding the effectiveness of parent-recorded voice warnings vs tonal warnings in waking children.  As many of you know there are alarms with this function already available.

Some points to keep in mind and to share if asked as a burn care expert :

–       Nearly every national fire expert, recommends having both types of smoke alarm in a home for optimal protection.  Regardless of technology, smoke alarms must pass the same tests to receive UL-listing, and studies show that both types provide adequate warning for egress.

–       Having a working smoke alarm does not guarantee that you will survive a fire – it increases your likelihood by 50%.  There are still many unknowns, which is why it’s so important that families install smoke alarms throughout the home, replace batteries every year and alarms every 10 years, and have an escape plan so they know what to do when an alarm sounds.

–       Regardless of technology, homes that do not have enough alarms are still under-protected.  Recent surveys show that three out of four homeowners don’t know where to place smoke alarms.  The NFPA recommends placing smoke alarms on each floor and inside and outside of sleeping areas.  IAFC along with Kidde, created a toolkit to help remind fire departments and the community about the proper locations for alarms.  It is available at www.smartalarmchoices.org

–       We asked Kidde a leading manufacturer of residential fire safety products about the technology, Kidde states they review industry data, trends and scientific studies in order to advance technology and create solutions to further protect people and property from fire and related hazards.  Recent examples include:

  • Launching a combination smoke/CO alarm with voice notification nearly ten years ago, based on research showing that voice may be more effective at waking children (the teaser report states they are not available yet)
  • Launching a wireless smoke alarm in 2005 to help bring the benefits of interconnection to nearly 100M homes, based on research showing that average time to escape a home has dropped from 17 minutes to three minutes
  • Launching a line of sealed-in battery smoke and CO alarms in 2012/2013 to help address the issue of battery removal and fire deaths; nearly 2/3 of all fire deaths occur in homes without alarms or with no working alarms, mainly due to dead or missing batteries.  This product line also eliminates homeowners’ top fire safety annoyance – low battery chirps – and was designed with location-based features to make it easier to choose the right alarm for the right location.

Dateline airs at 7pm ET and has an average audience of 6 million viewers.  It is critical that the consumers understand the facts about smoke alarms and it is also an opportunity for us to further educate the public on the topic of prevention, including those building new homes to add fire sprinklers to increase the chances of surviving a fire from 50% to 80%.

Thank you for your effort in sharing this important information with your family and friends to prevent further burn injuries and deaths.

Amy Acton
Executive Director