Tag Archives: religion

Climate of Disregard

This post has been written and rewritten in my head.   Most of them are.  Sitting down to the keyboard and examining the events of our life here is often an achievement simply in time and energy to complete my task.   Beyond that, I ask myself to be candid (to a reasonable degree) with myself and my audience.   Of course, to relate my life I must confess my own faults as well as revealing the ones I discover in this very strange special needs life.  Earlier this week, a friend and special needs mom, S.S., referred to my blog as “blunt.”  Blunt?  This, I believe, she intended as a compliment.  So, I will continue to strive for blunt since it seems to be my style.

Now, here we are when I must confess and address my own faults.  But I need to recognize my faults and methods without altering my purposes.  I have already admitted throughout the life of this blog that at times I can fall very easily into the role of Mama Bear (at times referred to as “Crazy Woman”).   As last Monday dawned, I had a few subjects on my mind to address this week via this blog: special needs camps and wheelchair accessible vehicles.  I expected the week to be fairly calm as Ronan headed off to a day camp and Riley spent one on one time at home with me.  Unfortunately, my head seems to be stuck in Park back at the camp parking lot.

Different Dream Parenting: A Giveaway

Do you follow the Different Dream for My Child blog by Jolene Philo?  It is a wonderful special needs resource.  Now comes the book.  And I have one to share in a Giveaway!


Ms. Philo is kindly allowing Rileys-Smile to give away a copy of this invaluable resource.  I am so excited and ask that each parent/caregiver/family member of a child with disabilities to please enter my giveaway.

I Didn’t Sign Up for This,God!
Have you ever had one of those dreams where you can’t move? The car is racing toward the edge of a cliff and you can’t lift your foot to press the brake pedal. An attacker is breaking down the door to your house and you can’t raise your arm to dial 911. Your child is about to run in front of a truck and you can’t open your mouth to scream.
My bad dream became a reality in 1982. My husband and I stood beside our son’s isolette in the neonatal intensive care unit. An IV needle pierced Allen’s tiny arm, and angry red scars crisscrossed his chest. One end of his feeding tube hung on a pole beside his IV bag. The other end rose from the soft skin of his tummy. Pain etched his wide forehead and tugged at the corners of his perfect rosebud mouth.
More than anything, I wanted to reach out and take his hurt away. But I was trapped in a bad dream. Immobilized. Inadequate. Helpless. Though God had assigned me to love and care for this beautiful child, I could do nothing to minimize his pain. My thoughts were an inward scream. This isn’t what I signed up to do,God! I don’t want to be a helpless onlooker. I want to parent my child. How can I care for him? What can I do?
As the parent of a child with special needs, you’ve probably experienced the same sense of helplessness. Whether your child is critically or chronically ill,mentally or physically impaired, develop- mentally or behaviorally challenged,you want to do something. You want to ease your child’s pain, but you don’t know how. You want to help your child realize his or her full potential, but you don’t know where to begin. You want to ask God about your child’s suffering, but you don’t want to be condemned for questioning His wisdom. You want to believe God is with you, but you don’t know how to find Him.
You’re stuck in a bad dream. You can’t move. You can’t speak. You want someone to shake you awake and tell you everything will be okay. Instead, you wake up and must become the parent you never expected to be. You doubt that you’re up tothe task. You’re worried about your child’s future. And you’re wondering, Does anyone understand what I’m experiencing?
The answer is yes, many parents understand your situation. In the United States,
•        10–15 percent of newborns, or 431,000annually, spend time in neonatal intensive care according to the March of Dimes.
•        12 percent of children between ages 1and 17 had medical conditions serious enough to require hospitalization between2004 and 2006, the most recent years for which statistics are available at the Centers for Disease Control and Prevention.
•        13.6 percent of students between ages 6and 21 were enrolled in some kind of special needs program according to the National Center for Educational Statistics. That’s 706,000 of our country’s school-aged children.
Lots of kids mean lots of parents, dads and moms who are valuable sources ofinformation and advice. In this book, dozens of them share with you the wisdom they gained while parenting kids with special needs.
Support can also come from the surprising number of professionals who work with families of kids with special needs. These professionals—and the resources they’ve created—are available at hospitals, medical facilities, government agencies, private organizations, businesses, schools, churches, and more.
Thisbook brings you advice from professionals around the country and provides information about national organizations and resources. It also gives tipsabout where to start searching for state and local resources. More often than not, your problem won’t be a lack of resources, but a lack of awareness of themor inability to access them.
Different Dream Parenting contains six sections: Diagnosis, Hospital Life,Juggling Two Worlds, Long-Term Care Conditions, Losing a Child, and Raising a Survivor. Each section is divided into four chapters. Three chapters address practical issues. The last chapter in each section addresses spiritual concerns.
Parents of kids with special needs often wrestle with prickly spiritual questions. I sure did. Sometimes I still do. So do all the parents interviewed in this book, and most of the professionals, too. Every day, we continue to ask questions about our kids’ lives and futures. Gradually, we learn more about how to trust God’s timing and wait for His answers.
Asyou read this book, please ask your faith questions. Read about how parents and professionals learned to ask questions, wait, and listen. Consider the answers they have discerned and their suggestions about how to find comfort and courage in God’s Word. When you are ready, try out their ideas about how to pray and use Scripture to hear God’s answers to your hard questions. The thirty-day prayer guides in appendix A are designed to help you engage in conversation with Him.
Buteven with prayer guides and Scripture to guide you, I know how hard it can be to trust the God who is allowing your child to suffer. So I won’t condemn youfor asking prickly questions. Instead, I’ll encourage you, cry with you, and support you when your faith grows weak. When you can’t hang on a minute longer,I’ll hold you close until your strength and your faith return.
Ihope this book helps you break out of your bad dream, wake up, and move forwardwith joy and confidence. I pray that the stories of parents and professionalsin this book will give you hope and strength.
Most of all, I hope youdiscover the truth God has revealed to me and many other parents. Raising achild with special needs isn’t a bad dream. It’s just a different dream. Andsurprisingly, a different dream can be the best dream of all.
Taken from Different Dream Parenting, © 2011by Jolene Philo. Used by permission of Discovery House Publishers, Box3566, Grand Rapids,  MI 49501.  All rights reserved

Entry: Different Dream Parenting Book Giveaway

Please enter the comments below  and share your name and your preferred contact information.  You may also use the email button instead to the right of the page under “Stacie’s & John’s Links.”  Should you be willing, I would love to hear a little about the child in your life along with your entry.  Multiple entries are welcome with additional comments.  Giveaway entries will be accepted through November 30th.  The winner will be determined by a drawing…. perhaps Riley will rummage around a hat for us to make the choice, I’ll ask him.

The book is available at 10% off the retail price:

"I talk to God…"

My contribution is a memory from October2008:
Where did my toddler disappear to?  Searching the house, I entered the bathroom to find Ronan laboring away seated on the small redpotty.  
Seeing me, he explained that he was in there “talking to God.”  Quite seriously he went on, “I talk to Godwhen I’m on the toilet.”    
This unexpected response left me wondering all day long how he had decided to spend his time on the toilet praying…  Each evening we recited simple prayers together and John and I each encouraged a relationship with God; however, I did not recall recommending this practice.  

Entering the bathroom, the tones of confidentiality indicated a spirituality beyond the child’s prayer I had selected for Ronan each evening from The Golden Treasury of Prayers for Boys and Girls.


Mystified by this behavior, I mentioned it to my husband, John, later in the evening.  Confession time for John: Weeks earlier Ronan kept knocking on the bathroom door and asking “Daddy, what are you doing in there?” After repeated this demand each time Daddy was found alone in the bathroom, John changed his original explanation to “talking to God.”   

Ronan has taken this as his example of how to spend his bathroom time.

We are all special… by Stacie Wiesenbaugh

Not Alright With Me…


Funny, I felt my stomach tightening just pulling into the parking lot for Vacation Bible School.  Handicap Parking is always filled with unauthorized users.  This person likely was picking up children learning the same lesson I just heard all the way home.  “God is watching all of us.”

“So”, I wonder “Am I a bad Catholic for resenting this violation?”  Perhaps… but if I do not object to this abuse no one else will.  I find this at each and every school we have participated in since Riley landed in his wheelchair.  I should have left my note… unfortunately, it was extremely hot and our air conditioning is broken so I did not write the traditional note and approached only this vehicle and not the other two violators.  Shame on me for allowing this to happen I suppose.  It is not alright with me and I am not done yet.

This is my discovery today… http://www.handicappedfraud.org, a website for reporting the Handicapped Parking Fraud.  I wonder if it works.  I hope it does.

Meanwhile, time for me to wrestle with my religion… oh wait, first Riley needs lunch, then therapy… then a snack.  Ok, I’ll wrestle with it in the next life and for the most part leave it to the other bloggers.

We are all special… especially those who have the deserve the handicapped parking over Riley… Stacie

6/15 update… There were three violators yesterday and a different three today one of which remained throughout the day.  My church and the volunteer coordinator wants the volunteers and parishioners to park as they will and requested me to leave it alone.  This is the same attitude I have encountered at each and every school, church and organization we have been involved with.  No, special needs does not get the support.  You may want to believe they do but it is a misconception.

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