Thank you to Our Sponsors and Donors

WBC_2013_Sponsor_BannerThank you to our incredible list of sponsors who are dedicated to helping burn survivors and their families thrive after a burn injury!  It is because of their generosity that we are able to provide the Phoenix Society’s World Burn Congress program each year.

The support of 125 wonderful contributors has provided healing, hope and a connection to a national burn community for over 800 attendees!

Please take a moment and join us in thanking them.  Connect to their website and let them know how much you appreciate their support for making Phoenix Society’s 2013 World Burn Congress possible!

A Continuing Need Inspires a Focus on the Future

Whether you have been a member of The Phoenix Society for years and are renewing your membership, or you are just discovering this wonderful organization, THANK YOU for your support. Your membership gift provides valuable resources to the burn community and gives the tools needed to overcome challenges a burn injury presents.

The following article by Amy Acton, Executive Director, is an excerpt from our Burn Support New, Issue I, 2013, and chronicles the tools one burn survivor used, and how she was empowered to overcome adversity.

As we celebrate our 35th year of service, I ask that you please take just a moment and reflect on your connection to the Phoenix Society and what it has meant in your life. Whether you are a survivor, family member, a donor, or one of our many partners, it is important for us all to stop and celebrate our success together.

With as far as we’ve come in the past 35 years, some might question why we don’t just revel in the accomplishments we’ve made and focus on maintaining what we’ve put into place. But the reality is that as far as we have come in the programming and support for long-term burn recovery, there is still much to do. Isolation, social challenges, and discrimination are just a few of the realities still faced by many families whose lives have been affected by a burn injury.

Lili (far right) with fellow World Burn Congress 2006 Attendees

Lili (far right) with fellow World Burn Congress 2006 Attendees

Lili, a burn survivor and long-time Phoenix Society member, sent us the following email after she had received a cruel letter regarding her appearance.

“I remember so clearly the first time that I attended WBC, I was a painfully shy and insecure young woman. So much was new and scary; facing people, talking to anybody, making eye contact, leaving the security of my house, but most of all, the most scariest and gargantuan challenge was living in a body I had not in my worst nightmares imagined that I would occupy.

I went to WBC at the invitation of my hero and mentor Barbara Kammerer-Quayle. During WBC I was elated, I felt happy, inspired and during those few days I felt comfortable with myself. All was good with me and the world at WBC. It was heart breaking to have to go back home, but I was immensely empowered that first time. I went back to WBC time and time again with the same positive effects as my first time there. WBC gave me the courage and determination to follow my dreams, come out of my shell and live my life as if nothing had even happened.

First I went back to school, then I got married and then I realized what I had always wanted since I was a wee little girl, to have a family. Everything I wanted to create in my life I did it, but not alone. The Phoenix Society’s WBC has been utterly one of the most important life lines I was given after surviving the fire, Barbara Quayle is one of the other and my children and my family and all of the wonderful people I have come across every time I have participated in the World Burn Congress.

Tonight after receiving a letter, I thought about the burn survivors I had met at WBC, the workshops, the peer support and I thought to myself if I had not had the support of the burn survivor community as a whole, I would have unraveled at the sight of the words in this letter. For a moment my knees buckled, my heart ached and felt the old need to retract from an ugly world, but in the same instant I came back to my senses and remembered that in the face of my reality, being a double amputee burn survivor, I have achieved much and overcome much and I credit you all with this inner strength. I thank you all from the bottom of my heart for being there and providing the tools necessary for someone like me to withstand the harsh words that some people in their ignorance might say to me.”

As I read her email, initially I was frustrated and angry that Lili had been subjected to such rude and thoughtless insults about her appearance. As I re-read it a second time, I focused on her main message—that the Phoenix Society had helped to equip her with the tools she needed to live her life with greater confidence and a sense of community. She shared that without the peer support and knowledge gained through the Phoenix Society she would have “unraveled.” Instead she was buoyed by the inner strength and knowledge that she had the tools she needed to deal with the situation and a community of support behind her. This is the impact of our work together.

Lili has participated in our community for many years, has gone on to live a fulfilling life since her injury, and has raised three wonderful daughters. Her growth and courage has always impressed me and although she gives a great deal of credit to the Phoenix Society and our “community,” I know that she has worked very hard personally to grow from her experience. However, Lili’s message did remind me just how important our work is, and it shifted my focus forward to consider the many opportunities that lie ahead for us to make an even greater impact.

The belief of the Phoenix Society is that if we can provide life skills and a community of peer support to burn survivors and their families, they can return to the communities in which they live with confidence and never feel alone.

Lili’s story should energize all of us to remain focused on the future health of the Phoenix Society for Burn Survivors and ensure that more families have access to this community and the growing resources offered here. Each of us has a role to play in this community.

How can you help? By getting involved and helping us to sustain the current programs through volunteering, contributing financially to the organization if you can, and sharing within your community the good work that happens here.

Our collective efforts have made a difference. Just as Lili shared, we are providing the tools necessary to live life.

Our work is too important to stop now.

By: Amy Acton, RN, BSN, Executive Director

A Survivor Story – Helping Our Youngest Survivors Have a Positive Return to School

with teen girl

Lisa Donovan (Left) with UBelong participant

Lisa Donovan, burned in a car accident at 18 months old, grew up in a small town that wasn’t familiar with burn injuries or the challenges they present, especially as she prepared to start school. 

Most children could pass the mandated motor skill tests required for 1st grade admission, but for Lisa they felt like defeat. Her burn injuries left her with damage to her vision and scaring on her hands that made the required skills of balancing on a beam and touching her pinky to her thumb impossible.

The motor skill tests were only the beginning of the many challenges the Donovan’s would face. Because of the lack of education and the community’s unfamiliarity with burn injuries, Lisa and her family found themselves struggling with comments like, “it isn’t Halloween, take off your mask!” or a phone call from the school principal asking Lisa to stay home for a few days because her scars were frightening a new student.

While these were not everyday occurrences, they did shape Lisa’s school experience, and the recollection of the hurt they caused is poignant, even today.  As a result, Lisa became a Child Life Specialist and is ecstatic to be a part of the development of the Phoenix Society’s Journey Back school re-entry resource.

She reflects on her own experience and understands all too well the relief she and her family would have had if the school and other students were educated about burn injuries, encouraged to display empathy, and given the tools to ask questions in a positive way.  So much pain could have been avoided if Lisa would have had access to the coping techniques and social skills offered within the Journey back resource.

Lisa now works hard to ensure all families have the tools and support needed as they return to school after a burn injury.  Eleven years ago, she began working with Shriners’ Hospitals for Children as a Child Life Specialist – a familiar place for her, as she is a former patient. In 2003, while searching for information to send home with a family about to be discharged, she discovered the resources offered by the Phoenix Society for Burn Survivors. 

She quickly attended Phoenix Society’s World Burn Congress and later introduced the Phoenix Society’s SOAR (Survivors Offering Assistance in Recovery) peer support program to her hospital in Boston. Today, Lisa continues to be an important part of the Phoenix Society family and the expanding programs we offer. She has assisted with the development of the Journey Back resource and materials, has shared her story in video productions, and currently volunteers as a facilitator with the UBelong youth and family program.

“Seeing families receive the help they need  and the knowledge that they are not alone after they leave the hospital, is extremely rewarding,” says Lisa.  “The fact that this entire program will be easily accessible online, with  videos, worksheets, and educational manuals for teachers, parents, and all professionals to help a child, is very exciting.  Even those that don’t have a local burn center can get the resources and support they need without leaving the safety of their home.  This is a resource that would have helped me through every stage of my school years.” 

No child should struggle alone with school re-entry, as Lisa did. Your support of the Phoenix Society and resources like the Journey Back school re-entry program are changing the lives of so many. Your 2013 Spring Membership Gift will empower so many like Lisa by providing the tools and support need to thrive again!  

donate_nowTo learn more about the Journey Back program click here and check back this summer to download the entire program.

Ohio Survivor SOARs and Gives Back so Others Can

Tony Nuss Family - Photo 2 - Web - captionFour years after a near fatal explosion changed their lives forever, an Ohio burn survivor and his family are giving back.

Tony Nuss was heading to work on an average weekday morning when his car exploded. As a result, he lost his hearing and suffered second- and third-degree burns on 20 percent of his body. This was Tony’s introduction to surviving a burn injury, being introduced to the SOAR program helped him truly thrive again. 

“One of my biggest challenges has been adapting to my changed appearance and the change in how others view me,” he admits. “When I became part of the Phoenix Society’s SOAR program, I learned there is support and tools available to help you introduce yourself to the world after a burn injury. SOAR has helped me deal with the physical and emotional scars from his accident,” says Tony.

As trained SOAR peer supporters at UniversityHospital in Cincinnati, Ohio, Tony and his wife, Mary Beth, now offer their support to other burn survivors. “SOAR helped me adapt and overcome and it’s rewarding to be able to offer that same hope to others,” he says. “It’s a great feeling to see a once-scared person smile with relief after a SOAR visit.”

Tony and Mary Beth also found their experience at the Phoenix Society’s World Burn Congress to be “life-changing.” Tony, a software engineer, volunteered to work with the audiovisual team, as well as attend all of the programming he and his wife could. “Seeing the confidence and happiness that other survivors like myself radiate to the people around them made me see that I can live a long and happy life with my family with no regrets and with purpose while embracing being a burn survivor,” he explains.

Tony is looking forward to having his wife, their 8-year-old twins, and 2-year-old daughter all experience World Burn Congress together this fall. “We all experienced a trauma, healed together, and have become stronger. We’ll continue to give back as volunteers and donors to the Phoenix Society so those that follow on this journey have the same support and programs that changed our lives.” 

The Phoenix Society’s SOAR peer support program began in 2001 at 6 hospitals and is now offered at 56 hospitals in North America, connecting you to a national network of hundreds of peer supporters who make peer support accessible to more than 11,000 people each year. The recently expanded SOAR program now includes specialized peer support for members of the fire service who have been injured in the line of duty.

To become a SOAR hospital, a SOAR peer supporter, or receive a peer support visit, please contact Pam Peterson at pam@phoenix-society.org or 800-888-2876.

Talking to Children about Loss, Trauma and Traumatic Loss

Talking to Children about Loss, Trauma and Traumatic Loss

Megan Bronson PMHCNS-BC

  As parents we want to protect our children and we have difficulty seeing them sad or hurting. However, in order for children to heal after loss, trauma, sudden death and traumatic loss, they need to be able to express their feelings, have those feelings heard with compassion, and have their questions answered appropriately. The following are meant to be guidelines for parents and caregivers who are looking for some assistance in how to tell a child about a loss, sudden death, trauma or traumatic loss, how much to tell them and when to tell them. These guidelines need to be individualized to your child’s particular situation and also modified for their age, developmental stage, and individual capacity to hear about the details of a traumatic event and loss.

Blog Picture - Talking to Children about Loss Trauma

 To tell or not to tell: Choosing not to tell a child about a trauma or traumatic loss risks the child hearing about the event in an unsupported or even an insensitive manner, such as from an older child, the media, or gossip. The child may also overhear adult conversation that is confusing and perhaps intensely emotional from upset adults who are also impacted by the loss or trauma. Better that you, the parents or caregivers who know the child best set the tone, choose the place, and the context for informing the child. Another risk of not telling the child is that we risk losing the child’s trust when we withhold information from them that they need to make sense of a situation and their feelings. Children often feel lied to and betrayed when they are not provided timely information.

  1. Who should tell: It is best for the child to hear difficult news from a trusted caregiver   such as a parent, grandparent, aunt or uncle, older brother or sister as these will be   the people who will be having ongoing supportive contact with the child and can follow up with them.
  2. Setting the time and place: Choose a time that you are in control enough of your  own feelings so that you can focus on the needs of your child. It is fine for your child to see your tears, however, it is not beneficial for a child to have to end up comforting  a parent’s overwhelming emotion. Many children protect parents from their own grief  because they see that the parent is hurting and they do not want to add to that.  Choose a place that provides privacy so that your child doesn’t need to feel self conscious about expressing their feelings or tears.
  3. When and how to tell:  Because of the risk to trust and also the risk of the child hearing in an unsupported manner, it is better to inform the child as soon possible after the traumatic incident or loss in age appropriate, clear and simple  language.  Avoid providing too many details as this will overwhelm the child. An example of simple and clear information would be, “There was a bad accident, and Daddy was hurt so badly that they could not fix him and he died. We are all very hurt and sad and sometimes even mad and we will miss him very much.”  The truth spoken simply with kindness and compassion catalyzes the emotional healing process. Older children may be able to handle more details and will ask for them when they are ready. Allow children to express their feelings and to ask questions. Avoid judging feelings or trying to fix them–just hear them and respond to them with compassion and comfort.
  4. Plant the seeds for future discussions: “You may not feel like talking about this right now but when you are ready to talk or have more questions we can talk about how you feel and get answers to your questions when we are able to.”  Follow up with the child periodically to see if they have further questions or need to talk. Focused listening and physical comfort need not take large amounts of time but can be given even for fifteen or twenty minutes a day and have a profound impact on the child’s emotional healing.
  5. How many details should children hear? This depends on the age of the child, their individual and developmental readiness to process upsetting and particularly horrifying details. Ask yourself if the child really needs to know the details at this time or if this can wait until they are older and more able to process and integrate the details. Sometimes these details may not be appropriate to share until the child is in their late teens or young adulthood.
  6. Ways to help your child:
  • Avoid exposing children to television coverage of the traumatic event that          effected your family or coverage of any traumatic event
  •  Avoid having adult conversations about the traumatic event within                        earshot of the child
  • Find a support group for grieving children and families, such as Gilda’s Club,          Hospice,  Church, Community, or Hospital based Bereavement groups. You may      also choose to seek support from specialty groups such as cancer support            groups, burn survivor support groups, survivors of suicide or homicide,  a                  group for bereaved parents, (such as Compassionate Friends), etc. Contact the       community mental health agency in your area for available support groups.
  • Seek individual counseling as needed
  • Be aware of trauma symptoms in yourself and your child and seek professional help if these persist
  • Talk to the child’s teacher and school counselor and let them know what your           child is going through
  • Provide your child with paper, crayons, markers and other creative materials         such as play dough, fingerpaints and other expressive materials as these are natural and effective ways for children to express their feelings
  • Provide the child with outlets for their anger and frustration such as age                 appropriate physical activities
  • Take care of yourself–you deserve this and your child needs you

Excellent grief and trauma resources for Adults and Children:

www.compassionbooks.com

www.theselfesteemshop.com

www.dougy.org The Dougy Center: The National Center for Grieving Children and   Families

www.childtrauma.org Child Trauma Academy  Bruce Perry MD, PhD

www.trauma-pages.org David Baldwin PhD.Trauma Information

www.samhsa.gov/MentalHealth/Tips%20for%20Talking%20to%20Children%20in%20Trauma_LOW_RES.pdf

 

 

 

GRATITUDE

The holiday season is often a time when people feel moved to express their gratitude for the blessings they have.  For burn survivors and family members, the holidays can be a mix of challenging circumstances and appreciation for the many people who have made a difference in their lives.  We would like to encourage you to spend a little extra time this season focusing on the positive and wonderful things around you.

Research is beginning to show that people who feel grateful are psychologically, emotionally and physically happier and healthier. They are more optimistic, have more energy, sleep better, get sick less often and are socially more outgoing.  We are also learning that the practice of gratitude helps with emotional healing; negative thoughts seem to pop up less when gratitude is practiced more.  And there’s more good news:  you can create habits that bolster gratitude and reap the resulting benefits.

The following activities will help you and your family to build your gratitude skills.  Choose one or two this holiday season and watch your own spirit of thankfulness and appreciation grow stronger and fuller.

CREATE A GRATITUDE JOURNAL:  Take time daily to write down at least three things from your day that you are thankful for.  For families, go around the dinner table and have everyone share one example of gratitude from the day.  For individuals, share a journal entry with a friend.

Thank You - heike - friend -small

GRATEFUL ACTS OF KINDNESS:  Practice exercising your appreciation by doing intentional acts of kindness.  Visit your local firefighters or burn center and take a plate of cookies.  Have the children draw pictures and send them to the burn center.

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MAKE GOOD MEMORIES:  Intentionally make memories to be grateful for, with people you’re grateful for.  Take fun photos of yourself or your family, draw pictures of good memories from the year and hang them in the windows, post your favorite joke on _GRG7472  Facebook, write a blog, make a photo-book, send a hand written letter:  all ways to document experiences you’re appreciative of.  Share them with others.

 In the art of appreciation, from all of us at the Phoenix Society for Burn Survivors, thank you for who you are and all you do!  We look forward to 2013 and are grateful to have you as part of the burn survivor community.  

Donor Spotlight: Buses by the Beach Provides Miles of Smiles to Burn Community

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It all started with a conversation in Brien Dews’ clock repair shop in Rockford, Michigan.

Dews, a burn survivor and long-time member of the Phoenix Society for Burn Survivors, was speaking with friend Todd Olson regarding their mutual admiration of Volkswagen buses. After deciding to organize a charitable event involving fellow bus enthusiasts, they only had to decide on a charity to send any funds they raised.

“I told him ‘I have just the charity – the Phoenix Society,’” said Dews. Ten years later, Buses by the Beach has donated over $100,000 to the Phoenix Society, supporting burn survivors everywhere.

The group’s first event welcomed 12 buses, comprised primarily of family and friends. Now over 100 buses pour onto the Buses by the Beach grounds. The group has even created two spin-offs from its flagship gathering, a fall event before Halloween called ‘Bus BOO!’ and another during winter named the ‘Bus BRRR.’

Funds raised from each gathering provide community support, resources and tools offered through the Phoenix Society for Burn Survivors.

Speaking at the Buses by the Beach’s 10th anniversary in May, Lily Chatterjee thanked the group and shared what support from donors like those in attendance means to the life of a burn survivor.

Injured in a car accident in December of 1987, Lily shared that recovery is a long road and there were times she felt very alone.  She said that finding the Phoenix Society after attending its World Burn Congress program in 1997 gave her a family of support and the tools to live her new life as a burn survivor.

Your donation supports Phoenix Society programs that provide burn survivors with the tools and resources they need to thrive again

“I have needed the Phoenix Society for different things at different times in my recovery,” Lily said. “I attend World Burn Congress every year and still gain support.”

Stories like the one shared by Lily make the event that much sweeter for Dews.

“It’s very near and dear to me that burn survivors are able to benefit from this,” says Dews.

THANK YOU to Brien, Todd, and all that participate in Buses by the Beach events for your hard work in raising contributions and awareness that will give burn survivors the support and tools needed to thrive again!

Donate to the Phoenix Society and help burn survivors
everywhere get back to living
www.phoenix-society.org/donate

Learn more about Buses by the Beach at:
www.busesbythebeach.org