Today I want to introduce you to our guest blogger, Jolene Philo, one such friend of mine. While we have never met in person we have gotten to know a little about each other through email. I felt that connection with her from her very first email when she told me that her son, who is just two years older than my own, was born with a birth defect. She had read my blog post about the story of the day John Mark was born, and found that we had similar experiences. She is someone who understands what I have gone through.
Jolene is the author of two books which are fantastic resources for parents of special needs kids. I will let her tell you about her most recent book, Different Dream Parenting. Her website, Different Dream, is a great resource as well...please check it out!
I am giving one of these books away and you can find out how at the end of Jolene's post. I will also be blogging several times in the next few weeks about my experiences raising John Mark and how they relate to different topics in Jolene's book. There will also be some surprise giveways!
Now, meet Jolene!
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.
Jolene has given me a copy of her book to share with one of you! Just leave a comment here. If you have a story to share about your own child we would love to hear it! If not just say 'I'm in!' and you will be included, too! A winner will be drawn randomly on Saturday, Jan. 14, so make sure you leave your email with your comment so I can contact you if you win.





