I am honored to have as my guest today, Author Jolene Philo. Jolene is not only an author and mega-blogger, but also a mom with more than twenty-five years of experience raising a special needs child. She understands the confusion and feelings of loneliness at the time of diagnosis - and beyond.
With the release of her new book, Different Dream Parenting, many parents will now have a resource to turn to when questions arise concerning many things: hospital stays, dealing with schools, and how to involve siblings so they won't feel left out.
She also adds the necessary inspirational element that stressed out parents need. She provides devotionals with scripture to give parents the strength to lift their heads above the rising tide waters.
Jolene, I'm glad you stopped by today. Tell us about yourself and your journey of hope.
When our beautiful newborn boy was transferred to a regional hospital, my husband and I felt lost at sea. A few hours later, we learned that our baby required immediate surgery at a university hospital 750 miles away. Without it, he would die. That news threw us overboard. We longed for someone who could come alongside and pull us out of the water. A book to chart a map through unfamiliar waters and assure us of God’s presence.
But our son was born in 1982 when pediatric medicine was a relatively new field. Families like ours were hard to find. Parenting books hadn’t been written. The internet didn’t exist. Over the next twenty years, even after the surgeries and medical procedures that corrected our son’s condition were over, my search for parenting resources yielded scant results. Eventually, I sensed God nudging me to come alongside young parents lost at sea like we had been, to create a map they could follow.
Different Dream Parenting: A Practical Guide to Raising a Child with Special Needs is that map. It’s a map for parents of kids living with medical special needs as well as conditions like Down Syndrome, juvenile diabetes, developmental delays, and autism, and those facing a terminal diagnosis. It guides parents by providing tools and resources they need to become effective advocates for their kids.
The book features interviews, advice, and resources from more than fifty families and two dozen professionals. With their help, the book addresses the situations parents face every day. Things I wish someone had told me, like:
- Asking questions after diagnosis.
- Dealing with insurance companies.
- Preparing a child for a hospital stay.
- Accessing financial resources and government monies.
- Accessing special education services.
- Determining optimum level of care.
- Mobilizing volunteers at home.
- Supporting the sibs.
- Preparing a child for death.
- Planning a funeral.
- Participating in community and church events.
- Creating a special needs trust for adult children with special needs.
In addition to practical advice, Different Dream Parenting tackles spiritual questions families are often afraid to ask. Questions about:
- God’s sovereignty
- Parental guilt
- Setting and maintaining spiritual priorities
- Grieving for children living with special needs
- Grieving the death of a child
- Passing faith on to children with special needs
Thirty day prayer guides in the appendices are for parents too exhausted to form their own prayers.
I remember what it’s like to be lost at sea, thrown overboard by an unexpected diagnosis, and drowning under a flood of caregiving demands. My goal is to put Different Dream Parenting into the hands of floundering parents so they have a map and know they’re not alone. To order the book, visit www.DifferentDream.com and click on the “buy the book” tab.
Thanks, Leann, for this opportunity to guest blog at Journey of Hope and tell people about Different Dream Parenting.
Thank you, Jolene, for stopping by. I think your book is a must-have field guide for the unchartered waters of parenting a special needs child. I wish I'd had it in April when my seven-year-old son was diagnosed with juvenile diabetes. So many time saving tips and helpful resources are now available at my fingertips.
Jolene is giving away a copy of her book today. All you have to do to be entered is leave a comment and include your email address.