Different Dream Parenting: A Practical Guide to Raising a Child with Special Needs
Posted January 2, 2012
As a parent of two children with special needs, I have a passion for ministry alongside children and adults with special needs. Recently, I was given a copy of Jolene's new book, Different Dream Parenting - A Practical Guide to Raising a Child with Special Needs. Every parent of a child with special needs should read this book!
This book offers advice and insights from the time diagnosis through young adulthood. Different Dream Parenting shows us how to walk with God as we deal with the diagnosis, parenting the chronically/critically ill child, marriage and family life, dealing with extended family, working with healthcare professionals, managing the school years, emotional sequelae to multiple, serious procedures, planning the future of the child with special needs...and even the death of a child.
As a parent, I know that many times along the journey I did not know what I needed -- and was often confused as to what might be in the best interest of my child. Have you ever been so tired, lost and confused that you didn't have the energy or know what to pray? Different Dream Parenting offers spiritual comfort and practical, important ways to pray.- with prayers sprinkled throughout the book and seven prayer guides in the appendix.
I think my favorite part of the book deals with dispelling and defeating guilt - an almost universal condition after a diagnosis that indicates a child with have special life-long needs whether they be physical, emotional or intellectual.
"Believing God has a purpose for you and your child on this special needs journey is another way to combat guilt. In Exodus 4:11, God says, 'And who do you think made the human mouth? And who makes some mute, some deaf, some sighted, some blind? Isn't it I, God?'
"According to Exodus 4:11, God created your child with a special need. Therefore, He has a reason for it. Maybe He's already revealed what it is. Maybe He's given you only the faintest inkling. Maybe you're still waiting for His purpose to be revealed. But your weapon against guilt isn't how much you understand about God's purpose. Your weapon is a rock hard belief that He has a divine purpose your you child, whether or not you understand what it is."
Though there is no guide to living with a child with special needs that will address all the intricacies that come with the diagnosis and life with a child with special needs, Jolene's book sheds much light on the journey whether you are in crisis or in a more stable place on the journey. Different Dream Parenting is a practical, thoughtful and insightful guide which offers much food for thought. As one who has traveled the path dealing with children with special needs for a very long time, I recognize this book for the gem it is - a must read for the journey! As one who is beginning a special needs ministry, this book will provide great insight into what families experience as they deal with raising a child with special needs.
January 2, 2012
You're not alone!
One of the hardest things for me to describe about my experiences as the mom of a child with some special needs is how lonely it sometimes feels. It's weird for me to say this because I have wonderful family and friend support. There is a plethora of people available to hear me and help me, should I need them. But I find it difficult to always adequately express what is bothering me about my 5-year-old daughter, diagnosed with Noonan Syndrome at 15-months old. Though I am a writer, there are just some worries I can't put into words. Often, there's no concrete reason for my concern... it's just a feeling I have. And let me tell you, for moms, and especially those of children with issues, feelings are our inner Garmin.
Have you ever heard the principle of Aristotle that is taught in law school? Absence of evidence is not evidence of absence. That one theory best encompasses my experience as the mom of a child with special needs. So much of what I experience with her isn't tangible. It can't be seen. Often it can't be put into words. But still, I know it's there. And often, that's why I feel alone. Because how do you share something you can't even put into words. How do you share the shadow of a feeling?
I think that's what I appreciate most about the Different Dream books, and in particular, Different Dream Parenting. From the first page I felt understood by people I'd never met who are in situations completely different from mine. They know what it's like to chase a feeling and feel like you're chasing your tail. They know what it means to know your child so well, to be so connected to your child, that with just one look you know something is wrong... even if there are no obvious signs. It's vindicating, I tell you.
I appreciate greatly how this book takes the words of parents and follows it up with supporting scripture, and advice from physicians and experts. Prior to reading this book, it never occurred to me that children who've gone through medical trauma could suffer from post traumatic stress disorder (PTSD). But it makes so much sense. Reading that in the book was a head-slapping moment for me. Duh! Of course something like medical trauma could result in PTSD for a child. Why didn't I think of that? Probably because my head is a constant jumble of other worries and concerns. And even though I don't believe my child suffers from PTSD, that section of the book really helped explain to me why my daughter freaks out when anyone in scrubs comes her way. Or why she won't look her doctors in the eye and stares at the ground and hangs on to me for dear life when they're around. It explains why they have to strap her down at the dentist. I can't tell you how awful it feels to hear your child screaming as you sit in the waiting room. And then to see your child emerge from a simple dental procedure, with her face swollen and red, and her body marked from the straps that held her down, is, in a word, horrible. Sometimes I think I may have PTSD from having been the sole witness to such situations over the past five years. Though I don't believe my daughter actually remembers all the poking and prodding and testing and hospitalizations that came prior to her diagnosis, I do believe she knows it happened. It stuck with her. And knowing such behavior isn't uncommon for kids in her situation is comforting to me.
Different Dream Parenting is chapter after chapter of such realizations for me. Lots of "ah-ha!" moments. Most of all, the book puts all these things in perspective. Yes, our experiences are ours and they're all relative, but it's so calming and even vindicating to know there are others who feel how I feel... and know what I know: From everyone who has been given much, much will be demanded; and from the one who has been entrusted with much, much more will be asked. (Luke 12:48).
I am up to the challenge.
December 22, 2011
Must Read for Parents with Special Needs Children
Different Dream Parenting by Jolene Philo is a parent's handbook to navigating the world of raising children with special needs. Jolene does a great job of covering nearly every area of this crazy, but rewarding world. In addition to great information, there are many resources and prayer guides.
This book is an excellent resource for parents who are struggling through raising a child with special needs. No matter what stage of parenting, there is practical information and guidance in this book. The way it has been divided into sections, with important information highlighted in grey boxes, a parent can pick it up and easily identify the section that is most relevant at the time. For the parent who wants to read cover to cover, the layout and style of writing makes for an easy, yet informative read.
In addition, I found the Bible verses and parent quotes at the beginning of each chapter, as well as the prayers at the end of each chapter to be very inspirational. Being able to identify a verse that addresses the issue I am dealing with always helps me to stay focused on God and His power in the situation.
Overall, I would recommend this book to any parent raising a child with special needs, but especially for a parent who has children with medical needs.
December 9, 2011