In 2018, the Arthritis Foundation launched its Live Yes! Connect pilot program for parents of children living with juvenile arthritis and other childhood rheumatic disease. In addition to providing emotional and social support, the program offers educational resources and seminars to help parents improve the quality of life for their children. Jessica Ward, whose 11-year-old daughter Mercy was diagnosed with JA at age 4, is the sole parent facilitator for the JA parent group in Columbus, Ohio. We chatted with her to hear her insights about the parent group, including benefits, future plans and the best ways to get involved.
Q: Why did you decide to become a parent facilitator for Live Yes! Connect?
A: Even though Mercy was diagnosed in 2012, my family and I attended our first JA Conference this year in Seattle. Mercy has always been shy about talking about her arthritis, and with her disease well-controlled, I thought “What purpose am I going to actually have here?” But by the end of the conference I certainly found one.
The conference had such profound effect on all of us. While my fiancé Randy and I connected with parents like us, Mercy came out of her shell meeting kids who understood her for the first time. Even my 16-year-old son Zane, who was sort of dragging his feet about going, admitted he had the time of his life meeting other siblings who could empathize with him.
But for me, the real “aha” moment was listening to parents of newly-diagnosed children share their stories. I remembered what it was like being in their shoes – feeling overwhelmed, hopeless. Asking myself, “Is this my fault?” Witnessing the support in those conference rooms, I realized what I was meant to do: Help others who feel just as lost as I once felt.
When I got home, I was so energized to help that I immediately went to the Arthritis Foundation website and signed up to be a group leader.
Q: As a facilitator, what are your responsibilities and roles?
As a facilitator, I schedule meetings and recruit subject matter experts and others in the JA community to volunteer and join. The program is still new, and we’re still trying to figure out what works and what doesn’t, but so far, it’s been a huge success. For the most part, parent members inform the discussion topics. But some topics will continue to come up no matter what – like insurance, step therapy, emotional and physical health and educational rights.
Q: What have you found to be the most rewarding part of being a parent facilitator?
The answer to that question is two-fold. One, isolation is one of the worst parts of dealing with a chronic illness and helping anyone feel less alone is immensely rewarding.
Two, my daughter is excited about the work I’m doing, and I love making her proud. She’s even said that seeing me volunteer has made her want to help others like her when she gets older.
Q: What would you tell other parents to convince them to join?
It’s so important for parents to get support and have an outlet to express their feelings, worries and fears. This is not only true for parents of newly-diagnosed children, but also for parents who have a child with well-controlled disease like myself. Sure, your kid may look and act healthy, but only JA parents understand what it’s like behind the scenes to keep them that way and how stressful it can be. Just because you’re used to a situation, doesn’t make dealing with it any less stressful.
I think it’s also helpful for couples to attend together. Couples can have differing perspectives on JA and how it impacts them, but they don’t always express those feelings to one another. Explaining how you feel and empathizing in a group setting might help you address concerns you don’t always share with your partner.
Finally, it gives parents hope. JA can be daunting but hearing success stories and advice from others who understand what you’re going through can help you remain positive.
Q: What was training like to become a facilitator?
Training was straight-forward and simple. It’s comprised of a series of short quizzes which you can take at you own pace. After you pass, someone from the Arthritis Foundation gets in touch with you and explains the next steps of how to set up a meeting.
Q: What are your hopes for the program as it continues to move forward and develop?
I want the program to continue growing until every JA parent in the country has an outlet for support. The JA conference does a wonderful job of bringing people together, but it only happens once a year. My hope is that these groups will bring people together consistently year-round so that parents feel heard and learn about more ways to get involved.
With the help of a friend and fellow JA mom in my area, I’m also organizing informal weekly meet-ups so newly diagnosed parents can talk one-on-one with someone who understands their situation. It could be something as simple as meeting at a local coffee shop or a McDonald’s play place.
To make these goals happen, we’re going to need boots on the ground in 2019. I encourage any veteran JA parent who is looking to make a difference to become a parent facilitator. It’s a great way to pay it forward and make a real difference in the JA community.
Interested in joining the program or becoming a parent facilitator? While locations are limited for now, registration is open to anyone interested in leading a group or having a support group nearby. You can register here.