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Resilient Family, Resilient Child… Resilient Family, Resilient Child…
Juvenile Arthritis ConferenceWashington, DCJuly 7-10, 2011
Shelia Rittgers, MSWLicensed Clinical Social Worker
Duke University Hospital
Goals
• Look at the challenges of parenting a child with a chronic illness
• Identify interventions that help promote a healthy family, marriage and resiliency in a child with a chronic illness
• Identify resources to assist families coping with a child with a chronic illness
It’s a Family Affair
“Chronic illness doesn’t just affect the person with the condition. The whole family must come to terms with the illness, make major changes in schedules, priorities, and some how manage to remain a family.” J. Laundry, M.D. and L. Boujaoude, M.D. Your Child: Development and Behavior Resources
“…it is not the child’s disability that handicaps and disintegrates families; it is the way they react to it and to each other” Dickman
& Gordon:
One Miracle at a Time: How to Get Help For Your Disabled Child-From the Experience of Other
Parents
Common Challenges
• Loss of control• Anxiety• Anger/resentment• Sadness• Guilt• Financial concerns• How to manage everything!
“The day we were told the diagnosis began what we called the train ride. We weren’t asked to hop on board and we can’t jump off.”
Allison’s mom
Finding Our Way, Dartmouth STAR Program, Dartmouth Children’s Hospital
Family Maintenance Plan
• Education• Communication• Social Support• Perception• Routine yet flexible• Organization• R & R
“ I was so busy taking care of Allison that I often neglected myself. I’m fine, healthy but I
often feel that my “cup is empty” and I wasn’t a good role
model.”Allison’s mother
Finding Our Way, Dartmouth STAR Program, Dartmouth Children’s Hospital
Caring for the Marriage When Parenting a Child with a Chronic Illness• Gender Differences and Communication
WomenCultivate RelationshipsWork To Negotiate Mutual ResolutionDetailedReluctant To Take Time For SelfReach Out
MenLess Emphasis on RelationshipsResults and Move onProvide InformationFix It-if all else fails, read the manualSelf Solace
Caring for the Marriage When Parenting a Child with a Chronic Illness
Making the Connection
• Talk• Listen• Respect Partner• Understand• Focus• Practice Forgiveness
‘God Gave Two Ears and One Mouth That We Should Listen Twice As Much as We Speak’, Jewish Proverb
Caring for the Marriage When Parenting a Child with a Chronic Illness
• Beware of Over Identifying roles
• Together Time
•Make use of your support system
What Our Kids Have to Say…
“ It took a long time…we tried to protect each other for so long, we didn’t know how each other felt.”
-Harley-Teens Face to Face with Chronic Illness
By Suzanne LeVert
“We just don’t talk about things”. anonymous
“I’m a person, not just a disease... that’s not all that I’m about. Sometimes I have to remind myself about that
as much as I do other people.” - Derek-
Teens Face to Face With Chronic Illness, by Suzanne LeVert
What Our Kids Have to Say…
“I must be the first teen ever to complain about this. I don’t have any chores to do at
home. My brother and sister both have things they have to do. They each have
‘everyday’ jobs- making up their beds and one other thing like washing the dishes.
Then they have a ‘weekend job’ like washing the kitchen floor or cleaning the bathroom. They both feel resentful that I
don’t help out. I feel useless.”
Easy For You To Say:Q & A’s for Teens Living with Chronic Illness or Disability by Miriam Kaufman, M.D.
What Our Kids Have to Say…
“Every time I leave the house, my mother asks if I have medication in case I have a flare-up, even if I’m just going to the store… and to call if I’m too tired to walk home. And she says this in front of my friends so I feel like a baby.”
-Kathleen-Teens Face to Face With Chronic Illness
by Suzanne LeVert
Nurturing the Bounce Back Child
• Listen and Educate• Provide Choices• Promote Responsibility
– Thinking Outside the Box• Promote Good Job Attendance• Socialize and Remain Active• Attitude
Your living is determined not so much by what life brings you…as by the attitude you bring to life. John H. Mills
Words Of Advice…
“I guess one thing I’ve learned from having arthritis is that man is a very
adaptable animal. If you can’t do something one way, there’s sure to
be another way that’ll work.”-Carl-
Teens Face to Face With Chronic Illnessby Suzanne LeVert
Resource List
• Web Sites• Message Boards• Books• Newsletters
KGAT
A bi-monthly newsletter with the information to help your family live successfully with arthritis
www.arthritis.org/ja-alliance-main.php
Have arthritis? Here by chance because you know someone who does? Then you've come to the right place. Welcome to CreakyJoints, a community for people of all ages with arthritis who want to live their lives despite their condition. A place where having a little chronic pain (or even a lot of chronic pain) is OK, because there are others within earshot who understand.
www.creakyjoints.com
Includes advice on choosing a career, preparing for after high school, the school-to-work transition, going to college, paying for your education, work, financial and social security
benefits, and tips for living on your own.
The Arthritis Foundation
Decision Making for Teenagerswith Arthritis
Teens Face to Face
With Chronic Illness
Suzanne LeVert
Learn about treatments, practical tips for dealing with school, peers, plus some personal stories
Find out what happens when the school project is about you
Jennifer has a secret. Can she keep it? Should she?
• Family Village-online forum for discussion about any kind of health related issue for adults and children www.familyvillage.wisc.edu
• Brave Kids-online information and resource website for children with chronic illness, life threatening illness and disabilities www.bravekids.org
• Bandaides and Blackboards-online site about growing up with medical problems www.lehmans.cuny.edu
• Exceptional Children’s Assistance Center-online site focusing on educational needs, parent advocacy and health information www.ecac-parentcenter.org
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