Thursday, October 30, 2014

Siblings of Kids with Chronic Illneses

Earlier this week I had the opportunity to speak to a group of social workers at Johns Hopkins on siblings of kids with chronic illnesses. A chronic Illness is a life-changing event, not just for the sick child but for the entire family. The chronic illness poses a number of challenges to the whole family. In many cases the illness itself becomes the main factor of the family life...even if you try for it not to. It becomes the most popular topic of conversation (we have people call our home, "how's Ian" and that is the topic and the entire conversation...yes Becca picks up on this), the most important thing on the schedule and the major expense. This often leads to schedule changes, routine changes and sometimes just disturbing the overall sense of normalcy for the family (whatever that normalcy is). Helping the healthy child understand this is difficult...factors such as the chronic illness and age of the healthy child come into play.

Siblings face challenges associated with chronic illness of a child within their family. They often "find their lives are constantly interrupted by medical emergencies that trump well kid cares. -Leah Vanderwerp College of Arts and Science We have seen this happen with Becca quite a few times, even though we do our best for it not to happen. When we know of an event on Becca's schedule and things are going on with Ian we have turned to many to get her to that event and to try to keep her life as "normal" as possible. Some of these challenges include the shift in parental attention toward the sick child, the complication of the sibling relationship and rivalry, and potentially even a period of separation from one or both parents and the sick sibling. -Leah Vanderwerp College of Arts and Science Over the years and throughout Ian's numerous hospitalizations, we have developed a way of making sure that every night one of us sleeps at the hospital and the other one sleeps at home with Becca, getting her ready for her next day and to where ever she needs to be. Through advancement in technology the kids skype every night when Ian is in the hospital so they can check in on each other, making sure to give each other kisses good night and telling each other to sleep well.

As a result of these household changes, siblings may face a relationship based more on caregiving than mutual companionship. In the wake of a parent or sibling's absence, other children are often forced to step up and fill the vacated household roles. -Leah Vanderwerp College of Arts and Science The above are things that Brian and I have tried very hard to not do. We try to remember that Becca is still a child and it is not her responsibility to care for Ian. There are times we will ask for help and do remind her that caring for each other is part of being a family, however, due to our unique situation we try to remember that she is the sister, the twin sister for that matter. She does have chores that are age appropriate, and will get punished for not doing them or for having the typical "pre-teen" attitude. 

The healthy child may have feelings of guilt, become annoyed with the ill child because of all the attention they are getting...yes Becca does get annoyed because of this. They have to learn to speak frankly about tough issues at a young age like having a conversation with your 11 year old (both of them) about dying. Talking with Becca about what would happen if we did not trache Ian when we did, having a conversation with her regarding her brothers funeral and letting her know that we have planned it so when the time comes we can take care of each other and not have to worry about that part of it. Having a conversation with Ian, about heaven and letting him know that all of his body parts that no longer work are waiting for him along with other family members who have already passed on are there to meet him. Watching Becca earn her first aide badge with Girl Scouts...they had an ambulance come to work with the girls...watching her look at all the equipment and saying, "there's a suction machine, there's an ambu bag, there's an oxygen tank...etc" Very heartbreaking to hear your then 9 year old know what all of those pieces of equipment are plus how they work. 

Trying to establish some balance between the needs of your ill child and those of your other children is difficult. Some things we have done to do this are to make sure we have one on one time with both kids...we have told Becca if she feels she needs mommy or daddy time then she needs to tell us. We have been open and honest with her as best as we can at her level regarding Ian...after all she lives it in a different way then Brian and I do. She deserves to have her questions listened to and answered.

Some of the things I shared with the social workers are making sure to remind the family that they have other children besides the sick one and those children are going to need them as well. Reminding them that the parents need to take care of themselves as if taking care of parents is as important as taking care of the child because the parents need to be healthy (emotionally, physically, spiritually) in order to help the kids. No we don't practice all of would be nice. Helping the family to get resources in the community not for just when the ill child is in the hospital. For us, we are always in crisis mode and believe it or not, we have crisis mode of when Ian is in the hospital down to a science. It is the crisis mode of him being home that is harder to manage sometimes. The resources are not always least for us given his rare disease. We do have many resources in place and those we have in place are wonderful but there are definite times when more is needed.

I found this in When Jack Fell Down...Jill Came Tumbling After: Siblings in the Web of Illness and Disability

* Assess the family system, determining from healthy children their responses to the complex medical problems of their sisters and brothers. Identify from the assessment sources of strength and stress. Ask parents about the family constellation, support systems, and child care arrangements. Engage parents and children in a discussion about roles, responsibilities, and relationships of all family members. Explore with them family strengths and needs. Determine how children have been informed about the medical situation of their sibling and elicit parental perceptions of how well they have adjusted to it.
* Identify available resources within the family, school, and community.
* Craft the resources into a network that involves but is not limited to a mobilization of social supports. The use of on-line discussion lists and focused chat rooms has become a powerful means of sustenance for parents and children, both of whom gain access though this communication medium to age-mates dealing with similar issues. Parents may need help in understanding the concerns of their healthy children; therefore, nursing strategies should be designed to enhance parental coping as well as sibling support.
* Collaborate with other health professionals to maximize the use of concrete resources. Social workers might provide parents and children with vouchers for public transportation or with access to useful service agencies. Heed the advice of children who have "been in the web."

The following "shoulds," suggested by siblings, have been demonstrated to be effective supports (Itzkowitz, 1991). Siblings should:
1. Be treated as children, not as supplementary adult caretakers.
2. Not assume responsibilities beyond their preparation or maturity.
3. Be encouraged to express their feelings openly.
4. Have their questions answered in an age-appropriate manner.
5. Be involved in discussions and decisions involving family matters, particularly those that personally affect them.
6. Feel that their reactions and opinions are valued.
(Fleitas, 1998).

Lessons have been learned...this was also found in When Jack Fell Down...Jill Came Tumbling After: Siblings in the Web of Illness and Disability. Some of these things Becca has verbalized in different ways and I hope as time goes on she will continue to verbalize them and see more.

One teen pondered her life as the sister of a child with a progressively fatal neurologic disease, and conveyed a number of positive themes in her message. "Living and loving...has taught me so many things. I've learned how to be patient, understanding, and caring. How to love fully. I've learned to take time for the little things in life, like looking at the trees and watching the leaves blow." She continued, "To my amazement, I love the life I have because of him...I would never trade it in for anything else! I learned that when in life we're faced with challenges, we should deal with them the best way we can, we should take time out for ourselves, and we should never give up!"

The path to maturity is slippery, yet this teen travels it with certainty. She attributes her values to the lessons she's learned from her brother. "...the other day, perfect example, this girl in my class is complaining that nothing ever works out right for her. She whines because she has bad hair days one after another. And I'm like, 'Hello, get a life,' my brother is so brave with his trache and his wheelchair; he teaches me that what's important is kindness and courage and laughter. Never thought I'd get to a point where I'd say laughter, but I think that's how we all survive in my family."

I did not plan my talk, I just got up there and shared our journey and started speaking....I hope they gained as much as I did.

1 comment:

Anonymous said...

Deana Munchow Great food for thought. Thank you for reminding us.

Tamara Jayne Flax Again, beautifully written. Definitely from the heart. Becca is very lucky to have you and Brian for parents.

Michelle Kampler Schwartz How wonderful that you are able to take from your experience and help others... <3

Irene Summers Gordon Gellar You continue to be inspirational in everything you do and share with others.