Special Needs Parenting

Finding Faith And Friendship On The Special Needs Journey

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Why EA/TEF Awareness Month Is Grace Awareness Month

January 22, 2015 by Jolene Philo

  January is EA/TEF Awareness Month. If you have no idea what EA/TEF is, don't feel bad. I didn't have a clue it existed until 11:00 AM (Mountain Time) on May 23, 1982. I was impeccably dressed in a fetching hospital gown when a nurse wheeled me from my room to the nurses' station to take a phone call. Back in the olden days, cell phones hadn't been invented yet, and small hospitals … [Read more...]

Filed Under: Jolene Philo, Medically Fragile Tagged With: EA/TEF, EO/TOF, tracheo-esophageal fistula

Organized Caregiving: Oxymoron or Goal for a New Year?

December 17, 2014 by Jolene Philo

Organized caregiving. An oxymoron if ever there was one, right? And certainly not the stuff from which to craft a doable New Year's resolution, right? Well, yes. And no. Organized caregiving may seem like an oxymoron when life is a whirlwind of doctor's appointments, melt downs, therapies, IEP meetings, diet restrictions, and day-to-day demands of caring for a loved one of any age. But being … [Read more...]

Filed Under: Book Reviews, Jolene Philo Tagged With: book give away, Caregiver, organization, The Caregiver's Notebook

Happy Thanksgiving, Little Town on the Prairie

November 19, 2014 by Jolene Philo

My husband and I weren't looking forward to our first Thanksgiving as parents of a baby with special needs. The little town on the prairie where we lived was 750 miles from the University of Nebraska hospital in Omaha where our son had already had 2 surgeries, the first when he was less than 24 hours old. The surgeon insisted on scheduling a follow-up appointment before releasing our son after the … [Read more...]

Filed Under: Jolene Philo, Joy, Love, Posts By Writers, Thanksgiving Tagged With: Camp Crook, generosity, gratitude, memories, South Dakota

Inadequate, But Not Alone

October 23, 2014 by Jolene Philo

Today, I feel inadequate. Not at all qualified to encourage parents to fight the isolation that threatens to engulf them. Not at all worthy to remind them they are not alone. Not at all an example of how to ask for help from others. Because when events in my life took a difficult turn recently, I ignored my own advice. I rationalized my decision to isolate in numerous ways. It's no big … [Read more...]

Filed Under: Jolene Philo, Living Life Daily, Patience Tagged With: community, inadequate, isolation, prayer support

8 Parenting Truths Learned as a Grandparent

September 25, 2014 by Jolene Philo

Our first grandchild was born two years ago, and somewhere in the past few months he's transformed from a baby into a charming toddler. I recently spent three delicious days playing with him while his parents and my husband tended to some weekend projects. The long drive home gave me time to reflect upon how many parenting truths one small person could teach his grammy in such a short time. … [Read more...]

Filed Under: Jolene Philo, Love Tagged With: 1 Peter 2:24, failure, grandparenting

Build Upon Strength Instead of Weakness

August 28, 2014 by Jolene Philo

If only I had read this book early in my teaching career. That was my thought as I turned the last page of Kristine Barnett's book, The Spark: A Mother's Story of Nurturing, Genius, and Autism. Her tale of her two-year-old son's autism diagnosis, his downhill slide into silence, and her decision to build upon strength in him rather than always remediating his weaknesses resonated with … [Read more...]

Filed Under: Autism, Book Reviews, Jolene Philo Tagged With: autism, Jake Barnett, Kristine Barnett, parenting, The Spark

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