In this week’s episode of The UpBeat Podcast powered by CoachArt, co-hosts Greg and Roxanne sit down with Elena to discuss her family’s experiences with chronic illness.
Elena’s unique journey began when her son Brad was diagnosed with a pediatric brain tumor at the age of 14. Anxious to find a community of similar families, Elena took a shot on a new organization that was searching for pilot families in their new program — and that organization was CoachArt.
Inspired by the difference CoachArt made in her family, Elena now serves as a board member. She strives to help other families receive the same guidance, love, and support that CoachArt gave to her. And she’s joined us on our podcast to share some important advice and tips.
“It’s important to get help for everyone in the family … Don’t be afraid to seek marriage counseling or relationship guidance. Encourage the siblings of your diagnosed child to find and use outlets for sharing their feelings — from professional outside help to important one-on-one time with a parent.”
Much of Elena’s guidance centers on communication. And sometimes it’s hard to take stock of all the avenues of communication that will experience stress as the family navigates their new path — between the diagnosed and their family; between the diagnosed and their peers; within the family including the diagnosed; between the parents of the child; and all other relationships that exist within and around a family.
Here are a few pertinent communication tips that Elena offers in her interview:
Try to be as open and honest with each other as possible
This is new for everyone in your family. Encourage open communication, while also respecting boundaries. All of these new feelings can be better understood through sharing and exploration with each other.
Don’t be afraid of therapy and counseling
There are so many new and difficult issues to work out within a family upon receiving a chronic diagnosis; utilize the assistance of professionals who’ve likely been through this before. They’re likely to have insights from their experience that you’ve never thought of. Trust them and use their help.
Get help for everyone in the family
You will want to focus on your child who’s been diagnosed and that’s important. But there are also many other important components of a family’s dynamic. Don’t be afraid to seek marriage counseling or relationship guidance. Encourage the siblings of your diagnosed child to find and use outlets for sharing their feelings — from professional outside help to important one-on-one time with a parent.
Utilize all your resources
Elena was lucky enough to find a community of support in CoachArt — we’re here for you too, but there are also other important communities who can provide support. They can include your church, workplace, friend group, extended family — don’t be afraid to utilize the support of whichever place you feel most comfortable communicating your feelings.
And there are also valuable resources online that can help with communication. One of our favorites is JustGotDiagnosed.com, an extensive resource run by Dr. Gary McClain. His site contains all sorts of help for newly diagnosed children and their families, with a particularly helpful area on communication skills. Dr. McClain has written dozens of posts to foster positive communication at home and at work, between all members of a family touched by chronic illness.
The UpBeat podcast is powered by CoachArt, a nonprofit organization that provides FREE art and athletic activities to families impacted by any childhood chronic illness – such as arthritis, asthma, diabetes, cancer, cerebral palsy and more. Programs are currently offered in the Los Angeles, San Diego and San Francisco Bay areas, with more cities coming soon!