Wednesday, May 16, 2012
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 5th, 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 5th, 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.
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.
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!
Tuesday, May 8, 2012
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 20th, 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)
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
- What is my problem?
- Think of some solutions (again, help your child think of possible solutions)
- Will it be safe, fair, and how will others feel?
- Let’s give it a try.
Printable visual steps for young children: http://csefel.vanderbilt.edu/resources/strategies/problemsolvingboy.pdf
- 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
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 “
on Inclusion”: http://depts.washington.edu/hscenter/teacher-tools#visual Head Start Center
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:
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 . 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! UK
*IAAM is the official Host and Event Coordinator of World Autoimmune Arthritis Day. http://www.iaamovement.org/