Unseen: How We’re Failing Parent Caregivers and Why It Matters made its global online premiere May 20. We caught up with Jess Ronne to ask some in-depth questions to help our readers better understand the issues raised in the documentary and how churches can be supportive of caregiving families.
1. The Unseen documentary shows parents of children who will never be able to care for themselves are ‘doing whatever it takes,’ making sacrifices far beyond what parents normally make to care for the child’s needs. What has the impact of your child’s significant, lifelong needs been on you? On your own health, state of mind, other relationships?
Honestly, I think I was okay until Lucas hit puberty. That’s when the longevity of the situation began to hit me, and I thought, “Wow, he will require lifelong care and what does that look like for me and for him?” And that thought felt very hopeless, because there are so few options, available especially as these children age.
My health has suffered immensely. I have constant joint pain and live in a constant state of fight or flight. I’ve gone through periods of weight loss, weight gain, hair loss, cystic acne, and panic attacks, all due to, I believe, stress. In terms of state of mind, I have good days and bad. I’m a fixer by nature and tend to focus on what I can control and not necessarily on what I can’t control, so I think that helps in some regards but also adds to the stress in other areas.
2. Who or what has been most supportive to you and your family? What are some practical examples of how your church community has supported you and your child, if any?
Only recently with our move back to my home state in Michigan have we truly found help, and mainly from our friends and family. In the past, the church has really failed for the most part when it comes to helping with our special needs situation. Interestingly, when my late husband had cancer, I didn’t cook a meal or clean my house for years, but when my child was diagnosed with a terminal diagnosis and to this day has a shortened life expectancy because of it, there has been very little support from the church. Our current church does offer a special needs ministry on Sunday mornings and that has been helpful.
3. What is one thing that most local churches can do that can bring you, your family and families like yours relief or support in your home, today?
Anything! Use your gifts. Meals go a long way. Bring our typical children to events. Offer respite. Help with yard work, send a volunteer crew to help on a weekend. The thing about special needs families is our to-do lists never end because of all of the additional needs of our child. Anything that the church can do to offer some relief is greatly appreciated.
4. What is one long-term thing that most local churches can do to support a family in your situation?
I absolutely believe that the answer lies in utilizing the small group model, and adopting a local special needs family. The small group can then enter into that family's situation, gain their trust, and help them through respite, meals, yard work, encouragement, etc. Another option would be to operate a day program for adults with disabilities. This is a huge need as these children age out of school and have nowhere to go and nothing to do.
5. Some churches provide periodic respite nights for families with loved ones with disabilities. For families like yours, is it feasible for your family to use church respite events? If not, what alternatives would you recommend?
It’s a nice gesture, but doesn’t work well for us. Our son thrives on routine, and in order to get him excited about going somewhere, that usually takes some time. Often, these respite offerings are a few hours; that is simply not enough time to get our child there, explain all his needs, fill out the paper work, whip over to a restaurant to “relax” and run back to the church to pick up our child in time. Also, these opportunities are often at night. For a child who thrives on routine, that means an interruption to dinner, bath and bedtime. Those interruptions often increase behaviors and aggression, so the respite ends up being more work than it’s worth.
6. Do you experience feelings of guilt when you make time for your own needs? How have you dealt with the tension between desperately needing a break and perhaps not being able to fully enjoy opportunities to care for yourself?
No, because I realize that the child is only as healthy as the caregiver. I absolutely believe that Lucas (and my other children) will suffer if I don’t take care of myself. I try to incorporate daily micro breaks. For example, I walk 30 minutes every morning and stretch for about 15 every night. I also will say to my kids, mom needs some alone time, and put them on Luke duty for 30 minutes, so I can take a bath or read a book or whatever it may be. We operate as a family, and as a family we help one another out.
Read part 2 of our interview with Jess. Learn how to see and share the Unseen documentary.
Jess Ronne is an author, speaker, and caregiver advocate. She is founder and executive director of The Lucas Project—a non-profit dedicated to providing respite opportunities for special needs families. She and her husband Ryan live in Michigan with their 8 children, including their son Lucas who has profound special needs. Her story of beauty from ashes has been shared on The Today Show, Daily Mail and Huffington Post and is detailed in her memoir Sunlight Burning at Midnight and newest book Blended with Grit and Grace. To follow the ongoing saga she can be found at www.jessplusthemess.com or Facebook/coffeewithcaregivers or Instagram/Jessplusthemess.
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