Tuesday, May 8, 2012

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 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)
  • 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.)
  • 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.
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

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:
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/

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