2018年，关节炎基金会推出了它的Live Yes!为患有幼年关节炎和其他儿童风湿疾病的儿童的父母连接试点项目。除了提供情感和社会支持外，该项目还提供教育资源和研讨会，帮助父母提高孩子的生活质量。杰西卡·沃德(Jessica Ward) 11岁的女儿梅西(Mercy)在4岁时被诊断患有JA，她是俄亥俄州哥伦布市JA家长组织的唯一家长协调员。我们和她聊了聊，听听她对这个家长小组的看法，包括好处、未来计划和参与的最佳方式。
问:你为什么决定成为Live Yes!连接?
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?
我希望这个项目继续发展，直到这个国家的每个JA家长都有一个获得支持的出口。JA会议做了一个很好的工作，把人们聚集在一起，但它一年只有一次。我的希望是，这些团体将让人们在一年的时间里持续地聚集在一起，这样父母们就会感到被倾听，并了解到更多参与的方式。
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.
为了实现这些目标，我们将需要在2019年派遣地面部队。我鼓励任何希望有所作为的资深JA家长成为家长促进者。这是一个很好的方式来传递它，并在JA社区做出真正的改变。
有兴趣加入该计划或成为一名家长辅导员?虽然目前地点有限，但任何有兴趣带领一个小组或在附近拥有一个支持小组的人都可以注册。You can register here.
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