Looking a system- a family is not a closed system there are many things that impact it each day and larger things such as a job change, a move and illness bring about more change and can have an even greater impact on those who make up the system
What do statistics say about the divorce rate of parents with a chronically ill child?Many studies but none conclusively linked the chronic illness of a child to divorce and many report that parents who did get divorced after dx had an underlying problem in the marriage prior to the child’s dx. There are differences in rates depending on the illness and the severity of it and most studies do indicate that there is more discord and divorce in families where the child is severely impaired by their illness.Just the daily stresses and needs of a family can be sometimes feel overwhelming-what about the added challenge of a child with a chronic health problem?This situation can lead to a crisis or an environment of operating in chronic stress mode but it does not have to lead to the this or the end of a marriage. This is where resileincy comes into play.Hodapp&Krasner 1995; Ziolko, 1991, Wallander&Noojin 1995; Syse&Lodge 2009 Norweigan study
You can’t control the fact that your child has JIA but you can begin to move toward acceptance of the reality of the situation and the need to live a different kind of life than what you were living. Your values have not changed but your situation has.
Your marriage really comes first. It sets the tone for the health of the family system. Nurturing and strengthening it can make a difference in the way the family group manages the added stress of a child’s illness and influence the meaning that is given to this particular challenge (perception) So I want to take some time to focus on taking care of your marriage.As individuals we have differences of opinion, individual coping styles and risk of miscommunication based on gender differenceThese are tendencies not facts chiseled into stoneWe look at things from a gender perspective whether biological or social development ..cultural etc.Women look at things from a relational perspective, men are often more focused on the goal, the end result of the task,situationIf all else fails, read the manual
Talk to each other. Don’t allow tension to build up, share your concerns and feelings.Debrief Really listen-focus on your spouse, have an empty mind not be searching for an answer while spouse is talking to you. If u do this u will find that you can be more attentive and understandingDifferent views can be valuable. It pushes us to think more about what we believe and we can look for common ground to create a solution.Look to understand the distress, what is behind it-values, experiences of life—helps you stop and be less ready to judge during a disagreement.When disagreeing focus on the problem not the person- if you are struggling, in a disagreement I would suggest that practice suspending judgment if you will.n It goes back to being a good listener. When this is happening think about the values, beliefs he/she is representing that are behind how they are feeling. Ex. Of the lady w the dogIF you need to step away to cool down-use the Benefactor exercise—think about who in your life has always had your back, loved you unconditionally (maybe a grandmother, grandfather, your parent. Envision that person in your mind, how they made you feel, find yourself relaxing and getting the focus back on the problem that needs to be resolved not how much you don’t like how he/she acts etc.Bitter, party of one. It will destroy you and your marriage
Mom’s often focus on the emotional health of the family/part of role is to take child to appts, responsible for meds.Risk that the other parent gets out of touch w what is going on, questions asked about tx, why didn’t u ask this question or that one-makes the caregiver feel undermined, second guessing going on-give Charlie B and Kathryn E examplesChanging up things can be nice, help you see things in a different way, nice for kids to see both parents in caretaking role, interacting w MD’s etc.Extremely important to take time to be alone, nurture your relationship. This could be a quick lunch, little love note, a night out, a walk. Be honest and considerate of each others needs. You are mom/dad, chaffeur, nursing assistant , but you were friends and lovers first.. Don’t lose that focusSupport of friends and family is important. Don’t hesitate to enlist their help to ease the stress you are feelings. Blow off steam, They can be a listening post or a baby sitter, errand runner, what ever you need. If you feel that you are struggling and need neutral assistance from someone outside of your circle of support, please do not hesitate to meet with a professional.
I believe that the process of transition-that is preparing your children to move to the adult world of medicine and self care starts early on in their care.TALK to your child and to your other do they thing is happening to them. I have met w frightened children who thot the reason no one was talkng to them about why they were seeing so many doctors was bec they were going to die and no one wanted to tell them. I have had others who were very distressed about their friends finding out or asking questions bec they did not know how to tell them about their illness . Carefully listen to what they are saying or not saying to you and include them as appropriate in discussions that are going to impact them as well as correct any misunderstandings they have.
Talk about Tom—17 , unsure of himself, began to believe that he was “so different” from peers that he wouldn’t get a job, wasn’ta what his future would be. When challenged he could not see beyond his small circle of friends/family who it seems often said to him—you sure you want to do that, can you do this that or you can’t due to his arthritis. We talked a lot about identifying what he like, skills and he ended up working w Voc Reb. To obtain job training.
Goals<br />Look at the challenges of parenting a child with a chronic illness<br />Identify interventions that help promote a healthy family, marriage and resiliency in a child with a chronic illness<br />Identify resources to assist families coping with a child with a chronic illness<br />
It’s a Family Affair<br />“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.” <br /> J. Laundry, M.D. and L. Boujaoude, M.D. Your Child: Development and Behavior Resources<br />
“…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: <br />One Miracle at a Time: How to Get Help For Your Disabled Child-From the Experience of Other Parents<br />
Common Challenges<br />Loss of control<br />Anxiety<br />Anger/resentment<br />Sadness<br />Guilt<br />Financial concerns<br />How to manage everything!<br />
“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.” <br />Allison’s mom <br />Finding Our Way, Dartmouth STAR Program, Dartmouth Children’s Hospital<br />
“ 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 motherFinding Our Way, Dartmouth STAR Program, Dartmouth Children’s Hospital<br />
Caring for the Marriage When Parenting a Child with a Chronic Illness<br /><ul><li>Gender Differences and Communication</li></ul> Women <br />Cultivate Relationships<br />Work To Negotiate Mutual Resolution <br />Detailed<br />Reluctant To Take Time For Self<br />Reach Out<br /> Men<br />Less Emphasis on Relationships<br />Results and Move on<br />Provide Information<br />Fix It-if all else fails, read the manual<br />Self Solace<br />
Caring for the Marriage When Parenting a Child with a Chronic Illness<br />Making the Connection<br /><ul><li> Talk
Make use of your support system</li></li></ul><li>What Our Kids Have to Say…<br />“ It took a long time…we tried to protect each other for so long, we didn’t know how each other felt.”<br />-Harley-<br /> Teens Face to Face with Chronic Illness <br />By Suzanne LeVert<br />“We just don’t talk about things”. anonymous<br />
“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 ChronicIllness, by Suzanne LeVert<br />
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.<br />
What Our Kids Have to Say…<br /> “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.”<br />-Kathleen-<br />Teens Face to Face With Chronic Illnessby Suzanne LeVert<br />
Nurturing the Bounce Back Child<br />Listen and Educate<br />Provide Choices<br />Promote Responsibility<br />Thinking Outside the Box<br />Promote Good Job Attendance<br />Socialize and Remain Active<br />Attitude<br />Your living is determined not so much by what life brings you…as by the attitude you bring to life. John H. Mills<br />
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<br />
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.<br /> www.creakyjoints.com<br />
Decision Making for Teenagers<br />with Arthritis<br />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.<br />The Arthritis Foundation<br />
Teens <br />Face to Face With <br />Chronic Illness<br />Suzanne LeVert<br />
Learn about treatments, practical tips for dealing with school, peers, plus some personal stories<br />
Find out what happens when the school project is about you<br />Jennifer has a secret. Can she keep it? Should she?<br />
FamilyVillage-online forum for discussion about any kind of health related issue for adults and children www.familyvillage.wisc.edu<br />Brave Kids-online information and resource website for children with chronic illness, life threatening illness and disabilities www.bravekids.org<br />
Bandaides andBlackboards-online site about growing up with medical problems www.lehmans.cuny.edu<br />Exceptional Children’s AssistanceCenter-online site focusing on educational needs, parent advocacy and health information <br />www.ecac-parentcenter.org<br />