LOVE Powers Our HOPE

Wow!  What a week we have had… I have been pondering over how to write our “thank you” all week in the midst of all of our happenings…As many of you know, Parker was accepted into and started the RAPPORT study which is an National Institute of Health study on the drug Rilonocept and its effects on systemic on-set juvenile arthritis.    So between work, labs, and a trip to Shands Hospital, I am finally sitting down to write about our Arthritis Foundation Walk and the thankfulness that overflows in our hearts…

Well, here it goes…  People walk in and out of our lives each and every day, it just naturally happens.  Taking the time to build lasting relationships with people has blessed our lives immensely.  And it’s moments like we have experienced when you realize how interconnected we all are… On May 5^th, we had the pleasure of sharing in one of the most remarkable experiences with many many people who will forever be IN our lives and dear to our hearts.  May 5^th, Parker was showered with love that totally wrapped around our family in a way that words cannot quite explain.  As we pulled into the parking lot, we gasped at the sea of purple starting to wash over the park.  We knew a lot of friends and family were joining us, but it’s overwhelmingly powerful to actually “see” it.  In addition to our team, there were many people out supporting various other teams…definitely more than last year.  All I kept thinking is how much love was in that park for one single cause!  Everyone’s lives were touched by the many forms of arthritis.

We are so very thankful to all the people all across the nation who wore their purple for our sweet boy, Parker.  And we are incredibly thankful to the over 130 people who came out to walk with Parker’s Purple Playas.  There were friends from my work, University of South Florida, and Michael’s work, Southern Wine and Spirits, who not only generously donated but also came to walk with their families and friends.  And did you know that Southern Wine donated each and every one of the 202 shirts that were made with the drawing of Parker’s Purple Playa on the front saying “I’m not fat; I ‘m puffy!”  It was so wonderful to have all our family and friends join us and even many strangers who quickly joined our circle of friends.  We had several early childhood colleagues/friends from multiple agencies and preschools who walked and some even hosted fund raisers to donate to the cause.  Girl Scout Troup 65 and Boy Scout Troup 212 joined with their families and also worked together to raise funds.  My aunt and uncle came out to pop kettle corn and donated all their proceeds to the Arthritis Foundation.   And a very special thanks to Joseph who went to all the staff from Parker’s middle school and shamelessly collected donations for his friend Parker.  We even had some staff and kids from TCMS’s Junior K Club join us.  Team mates also asked their friends and family to donate and walk.  We had complete strangers opening up their hearts to us.  Children from Westchase Aftercare gave up their coins to donate; and a very special little 4 year old Purple Playa, Kailyn, collected her precious “pennies for Parker”.  We had donations from all over the nation…from colleagues, friends, family, and complete strangers…all touched by one sweet boy, our boy.  We love him dearly.  If you haven’t met him yet, here is a short video that he made to explain what it is like to live with systemic on-set juvenile arthritis…I am sure if you watch, you will see how people fall in love with him too.  Parker's YouTube Video Link

As Parker was getting his team ready for our walk team picture that morning, I was in the bathroom helping the Tampa Bay Ray’s mascot, Raymond, get over to the team.  When I walked around the corner holding Raymond’s hand and looked out at Parker’s Purple Playas positioned for the snapshot, I could see Logan at the very tippy top of the mountain-like jungle gym.  Logan, Parker’s older brother, right at the top of it all.  I was totally overwhelmed at the site.  Logan has endured all of this right alongside of his brother and in that moment I was so very proud of the young man he has become.  He has strength, compassion, brilliance (the kind that shines), and he so deserved to be “on top”.  At first he was all I noticed…and as we got closer and closer the white nose I was hearing turned into cheers.  My breath escaped me…and my eyes glassed over with the tears that were trying to flow.  We were all there…in the moment… together!  For one cause!  With HOPE in our hearts! 

Parker grabbed his bull-horn that Logan had covered in duct tape…purple duct tape, of course.  He cheered his team on while we snapped pictures…  We love each and every one of the Purple Playas.  So much of the morning felt like a blur…  As we all began the actual walk, I kept thinking how incredible it was to share in this moment…all of us…walking together.  As we rounded the second corner I felt compelled to thank everyone…We were at the front of the walk, so I turned around and started to walk against the flow of traffic.  That was pretty funny because my husband also had the same idea (we had separated somehow but met back up as we walked against the crowd).  We knew the only way we could try and say thank you to everyone was to walk all the way to the end…so we did.  If you are reading this and we missed you somehow, please know that we are eternally thankful.

When we finished walking, the crowd dispersed somewhat to play games, enjoy the playground, and to check out the vendors.  And then a marvelous surprise arrived.  Parker has always adored one of the Rays baseball players…and guess what…his hero, Ben Zobrist, came to see his buddy Parker and he brought his beautiful family with him.  They were so gracious with their time and posed for the many pictures and chatted with the small crowd that gathered.  And when the crowd dispersed, I was deeply touched that they just hung out and played with their dear children.  Julianna Zobrist was so delightful and the fact that they took time out of their precious family time to join our family in this event was so special.

What touched me the most though, was that my father, mother, sisters, nieces, nephews, and aunts and uncles and my dear sweet grandmother all came out to join the walk.  I kept looking over at how beautiful my grandmother looked sitting under a huge oak tree with a smile full of love on her face and I couldn’t help but to think of my grandpa who passed the same day that Ben Zobrist walked into our lives when Parker got his Make-A-Wish…and there was one person who made so much of this come together for both of these events…Jen Funk.  She works with the Rays, often behind the scenes...and she is an amazingly giving and caring individual.  Thank you Jen! 

When Parker and I were saying prayers that night, Parker said to me “Mom there were a lot of people out there today for me.  It feels good to be surrounded by so much love.”  My thoughts keep going back to my grandpa… who would have thought that the Parker’s Purple Playas are “the most to say the least” and that all we need is “a smile and a few kind words” and that he would have thought that this event was totally “top drawer!”  I am sure he is up in heaven right now with Grandpa Tony, Memere and Pepere thinking how very blessed we are to be surrounded by love!

If you would like to see pictures from the walk please visit these 2 links (and there will be more…my uncle is still editing some) : 

Photographs by Denise Veselka

Photographs by Jane Winstead

Love from our family to all of Parker’s Purple Playas…Together we raised over $15,500.  Join us again, same time, same place, next year!

P.S.   And Happy Birthday Grandma Dianne.  We know you couldn’t walk with us, but hopefully you could share in the experience by reading this.  We love you very much!

From Professional Practice to Parenting a Child with Chronic Illness

Rochelle Lentini (Director of Program-Wide Positive Behavior Support and proud Mom of Logan and Parker)

On behalf of World Autoimmune Arthritis Day (WAAD), I share as a parent of a child with systemic on-set juvenile arthritis (Still’s Disease), but also as a professional who provides training and coaching to educational staff and families on social emotional well being.  I have reflected a lot lately about how life shapes us and leads us in directions, sometimes directions we don’t expect.  And with every change in one’s life there are a set of emotions that come along with that change, such as:  happy, sad, angry, excited, confused, hopeful, worried, anxious, exhausted, overjoyed…  Emotions are to be expected.  What is important is for us to make thoughtful decisions and choices that are not emotionally driven, reactive choices.  And yet, change is hard, whether it is a positive change or a negative change.

Raising a child with a chronic illness is not something most parents would choose to do, yet somehow we manage…somehow we persevere…somehow we flock together…and somehow we become resilient.  I feel incredibly blessed and fortunate to have a career that has equipped me with tools that help our family process and reflect, provides us with tools to guide our children and help them cope (this does impact the entire family), and allows me to team with my husband and make joint decisions.  May is “awareness month” for multiple autoimmune diseases and with WAAD right around the corner on May 20^th, I thought I would share some coping skills, strategies for families and children, and resources that our family embraces and implements while on this juvenile arthritis journey.  Much of this is from my work with the Center on the Social Emotional Foundations of Early Learning (CSEFEL) and the Technical Assistance Center on Social Emotional Interventions (TACSEI).  Strategies and materials were created for distribution and so my hope is that they can benefit some of you as much as they have benefited me and my family.

Skills of resilience every child needs to build a positive self-esteem

• Emotional expression and understanding
• Problem solving
• Coping strategies (due to pain, loss, disappointment)
• Self-advocacy

Tips to build skills in understanding, expressing, and self-regulating emotions

• Talk about your own feelings, as a parent
• Talk about feelings of characters in books, videos, or on TV shows
• Reflect on particular situations and discuss feelings
• Teach new emotion words (i.e., frustrated, disappointed, anxious, confused, hurt, worried, scared, etc.)
• For young children, print visuals of emotions and allow them to point.  Printable visuals at:  http://csefel.vanderbilt.edu/modules/2006/feelingchart.pdf
• Say to your child, “Tell me how you feel.”
• Support and accept your child’s expression of feelings; validate their emotions
• Describe your child’s expression or expressions in books/magazines
• Pretend play using “feeling words” with toys, stuffed animals, puppets, dolls, or action figures
• Draw pictures about feelings
• Model how to cope and stay calm using the Turtle Technique:
• Teach steps on how to control feelings and staying calm
• Step 1:  Recognize your feelings
• Step 2:  Think “stop”
• Step 3: Go inside your shell and take 3 deep breaths
• Step 4:  Come out when calm and think of a good solution (help your child think of solutions such as:  get an adult for help, ask nicely, play together, ignore, say “please stop”, say “please”, share, trade, wait and take turns, talk to an adult, make another choice, take a break, etc.)
• Printable visual steps:  http://csefel.vanderbilt.edu/modules-archive/module2/handouts/7.pdf
• Practice steps frequently when children are not upset (of course when children are upset also use these steps, but that is not the most optimal instructional time and the more children practice a new skill the better they retain that skill)
• Prepare for and help children handle disappointment and/or change
• Most importantly, recognize and comment when your child stays calm to promote new skill use

Teach problem solving steps

1. What is my problem?
2. Think of some solutions (again, help your child think of possible solutions)
3. Will it be safe, fair, and how will others feel?
4. Let’s give it a try.

Printable visual steps for young children:  http://csefel.vanderbilt.edu/resources/strategies/problemsolvingboy.pdf

Self advocacy

• Teach your child to ask for information:  prepare questions together, structure opportunities to practice, debrief together
• Support your child in joining in the discussion:  acknowledge your child’s presence, use his/her name, when appropriate invite your child into the conversation
• Assist your child in understanding options and making meaningful choices:  identify options, make a pro/con list
• Coach your child to challenge unfair or unjust treatment

RESOURCES

For articles and visual supports for families of young children visit the “Center on the Social Emotional Foundations for Early Learning”:  http://csefel.vanderbilt.edu/resources/family.html

For a variety of tools, visual supports, and printable stories for young children visit the “Center on the Social Emotional Foundations for Early Learning”:  http://csefel.vanderbilt.edu/resources/strategies.html

For the “Making Life Easier Series” for parents of young children visit the “Technical Assistance Center on Social Emotional Interventions”:  http://challengingbehavior.org/communities/families.htm

To access visuals for feelings, emotional regulation, problem solving with young children visit the “Head Start Center on Inclusion”:  http://depts.washington.edu/hscenter/teacher-tools#visual

For videos and supports to assist youth visit:  “Talking with Your Doctor and Other Health Professionals”:  http://hctransitions.ichp.ufl.edu/gladd/

For the printable resource, “Envisioning My Future:  A Young Person’s Guide to Health Care Transition” visit:  http://hctransitions.ichp.ufl.edu/pdfs/envisioning_my_future_gray.pdf

For the printable resource “When You are 18, You Are in Charge of Your Life:  Health Care Transition Guide for Young Adults by Children’s Medical Services Network, visit:

http://hctransitions.ichp.ufl.edu/pdfs/cms_wy18_lowres_09.pdf

WAAD website link- http://www.worldautoimmunearthritisday.org/

WAAD registration link- http://events.r20.constantcontact.com/register/event?llr=0&oeidk=a07e5n7i1aq5f98d0e9

IAAM has established World Autoimmune Arthritis Day (WAAD), to be held annually on May 20th, online and during all time zones, making it a 47-hour online event.  This Virtual Convention will unite patients, supporters and nonprofits from around the globe, inviting them to participate in both live and on-demand presentations, scheduled live chat sessions, surveys, live Call to Action posts and access to an online library of downloadable resources that can help them and their supporters in managing their diseases. Thus far, WAAD is registered on 16 health calendars internationally and has already received nonprofit support from over a dozen organizations, including the American College of Rheumatology, the Spondylitis Association of America, Arthritis New Zealand, the International Still’s Disease Foundation and Lupus UK.  As the official Host of this historic event, IAAM invites YOU to be a part of it too. Best of all?  It’s FREE to register!

*IAAM is the official Host and Event Coordinator of World Autoimmune Arthritis Day.  http://www.iaamovement.org/