Jolene Philo’s first child was born with a life-threatening birth defect that required immediate surgery, and 6 more surgeries over the next 15 years. She worked with special needs students in a variety of settings during her 25 years as a classroom teacher. She also served for four years as Director of Discipleship and Assimilation at her church. Her book, A Different Dream for My Child: Meditations for Parents of Critically and Chronically Ill Children was released by Discovery House Publishers in 2009. Her new book, Different Dream Parenting: A Practical Guide to Raising a Child with Special Needs is now available.
We’re honored Jolene will be joining us for Inclusion Fusion, speaking on the topic 10 Ways Churches Can Support Parents of Kids with Special Needs. The emotional impact of parenting a child with special needs begins at diagnosis and continues throughout the child’s life. Jolene’s workshop details ten low cost, high impact ways church staff and lay members can support families of children with special needs. The information presented in this workshop was gathered during interviews with more than fifty parents of kids with special needs, educators and health care professionals who support them.
Today, she’s graciously guest blogging for me…here’s Jolene’s post:
Back to the Basics by Jolene Philo
Back in my days as an elementary educator, I served as a cooperating teacher to several student teachers. Each bright, eager women had the same reaction after teaching their first social studies, math, or science lesson to students. “I thought the kids knew more about the subject than they do,” they exclaimed. “I had to go back to the basics and start there.”
“Yes,” I agreed, time after time. “it’s always best to assume ignorance.”
When I first began writing and speaking about how to help parents of kids with special needs, I assumed people knew something about the topic. After all, I’d been raised in a home with a father disabled by multiple sclerosis. Our first child had a special need that required 7 surgeries and countless invasive medical procedures before he was 5. Life as the care giver for someone with special needs was second nature for me.
Gradually, I learned a lesson similar to what those student teachers learned years before. It’s best to assume that those who have no experience with disabilities or special needs are ignorant about how to help the families who need their support. Obviously, they needed to learn the basic components of an effective support system. Unfortunately, the parents of kids with special needs are so preoccupied with caregiving duties they don’t have time to teach them.
Someone, I thought, needed to bridge the communication gap between those outside the special needs community and those in it. Eventually, I realized that somebody might be me. My memories of parenting our son were still vivid. Now that he was a healthy, independent adult, I had time to research and write a book that laid out the basics for parents and members of their wannabe support systems. With that realization, the idea for Different Dream Parenting: A Practical Guide for Raising Child with Special Needs was born.
A few of the basics components of an effective support system for parents are listed below. They were compiled from interviews with over seventy-five families and special needs professionals conducted during the writing of Different Dream Parenting:
- Caring for kids with special needs is very isolating. Anything friends, neighbors, and church family can do to break the isolation is greatly appreciated.
- Little things mean a lot. A card, a Facebook message, an email, a plate of cookies, and a sit down chat can make a big difference to families engrossed with care giving.
- Families should make a list of specific volunteer jobs and hand it to people who say, “If there’s anything you need, let me know.” Tailor the list to your circumstances, including items like: take typical siblings to ball practice, church clubs, school; pick up the grocery list and money, then do the shopping; mow the lawn once a week; etc.
- Volunteers should offer specific, practical ways to help: I’ll strip your beds, do the laundry and remake them every Tuesday; I will babysit every Thursday afternoon so you can go to the store; I’ll pick up the kids for Sunday school; etc.
- Parents of kids with special needs wrestle with guilt and grief. They need support for a long time. Not just days and weeks and months. Think in terms of years and decades.
- Families need to be lifted up in prayer. Use the prayer guides in Different Dream Parenting provide ways for families to pray and for others to pray for them. Or send a monthly email asking the family how you can pray for them.
As I interviewed parents and compiled their stories, one thing became very clear. The families who coped most successfully were those who had gone from viewing their children’s special needs as burdens to seeing them as blessings. The basics of an effective support system can help lift a family’s burdens and be an integral part of that necessary transformation.
That’s a good enough reason for me to get back to the basics. How about you?
Jolene Philo is the author of Different Dream Parenting: A Practical Guide to Raising a Child with Special Needs and A Different Dream for My Child: Meditations for Parents of Critically or Chronically Ill Children. Her blog, www.DifferentDream.com, highlights resources for parents of kids with special needs. She speaks at regional and national parenting and special needs ministry conferences. She and her husband live in Boone, Iowa and have two married children.
Jolene will be joining more than twenty-five leaders in children’s ministry and disability ministry on November 3rd-5th for a FREE Special Needs Ministry Web Summit to connect church staff, volunteers, family members and caregivers everywhere. That’s Inclusion Fusion, featuring Keynote Speaker Chuck Swindoll. Register here for the Summit!