resilient family, resilient kid

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Resilient Family, Resilient Child… Juvenile Arthritis Conference Washington, DC July 7-10, 2011 Shelia Rittgers, MSW Licensed Clinical Social Worker Duke University Hospital

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Page 1: Resilient Family, Resilient Kid

Resilient Family, Resilient Child… Resilient Family, Resilient Child…

Juvenile Arthritis ConferenceWashington, DCJuly 7-10, 2011

Shelia Rittgers, MSWLicensed Clinical Social Worker

Duke University Hospital

Page 2: Resilient Family, Resilient Kid

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

Page 3: Resilient Family, Resilient Kid

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

Page 4: Resilient Family, Resilient Kid

“…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

Page 5: Resilient Family, Resilient Kid

Common Challenges

• Loss of control• Anxiety• Anger/resentment• Sadness• Guilt• Financial concerns• How to manage everything!

Page 6: Resilient Family, Resilient Kid

“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

Page 7: Resilient Family, Resilient Kid

Family Maintenance Plan

• Education• Communication• Social Support• Perception• Routine yet flexible• Organization• R & R

Page 8: Resilient Family, Resilient Kid

“ 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

Page 9: Resilient Family, Resilient Kid

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

Page 10: Resilient Family, Resilient Kid

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

Page 11: Resilient Family, Resilient Kid

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

Page 12: Resilient Family, Resilient Kid

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

Page 13: Resilient Family, Resilient Kid

“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

Page 14: Resilient Family, Resilient Kid

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.

Page 15: Resilient Family, Resilient Kid

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

Page 16: Resilient Family, Resilient Kid

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

Page 17: Resilient Family, Resilient Kid

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

Page 18: Resilient Family, Resilient Kid

Resource List

• Web Sites• Message Boards• Books• Newsletters

Page 19: Resilient Family, Resilient Kid

KGAT

A bi-monthly newsletter with the information to help your family live successfully with arthritis

Page 20: Resilient Family, Resilient Kid

www.arthritis.org/ja-alliance-main.php

Page 21: Resilient Family, Resilient Kid

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

Page 22: Resilient Family, Resilient Kid

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

Page 23: Resilient Family, Resilient Kid

Teens Face to Face

With Chronic Illness

Suzanne LeVert

Page 24: Resilient Family, Resilient Kid

Learn about treatments, practical tips for dealing with school, peers, plus some personal stories

Page 25: Resilient Family, Resilient Kid

Find out what happens when the school project is about you

Jennifer has a secret. Can she keep it? Should she?

Page 26: Resilient Family, Resilient Kid

• 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

Page 27: Resilient Family, Resilient Kid

• 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