Excerpts from Unexpected Journey
Preface
Writing this book was not necessarily something we thought we’d do. After all, we’ve lived it once; we didn’t want to go through it all again. The first time was hard enough!
We saw a need for a book “out there” to address the needs of those caring for anyone with special needs. As we speak around the country and share parts of our story, people tell us they’ve been looking for help and hope in the midst of a situation that is never-ending and always demanding. People we meet express the frustration that other people in their lives (family, friends, coworkers) simply don’t “get” what they are dealing with. We’ve been there and certainly understand.
While on the phone with a long-time friend and in the midst of getting our special needs son ready for his shower, our friend said, “Oh, you have to help Joey shower?” This friend of over twenty-five years was surprised at our role and responsibilities. It wasn’t her fault. We seldom talked about it because most people (and I’m not saying this of our friend) don’t care. They see us do what we do and figure it’s really no big deal because we “make it look easy.” The truth is that it’s not easy; it takes every ounce of energy, patience, and endurance we are given. It’s demanding and grueling and often thankless. But our friend asked the right question to get us rolling on this book.
Sharing with others what we are going through is like visiting the Grand Canyon. We’ve been there, and we can tell others what we saw, the vastness of the expanse, the beauty of the colors in the rock formations, fabulous sunrises or sunsets, and the grandeur. But unless others experience it as we have, they will likely never quite get the view. A photo gives an idea of what the Grand Canyon looks like, but unless they’ve walked in our shoes, stood on the edge of the wide-open space, and taken in how “big” it is, they can’t experience it. Neither a picture nor conversation can capture the ten-mile width, 277-mile length or one-mile depth. Only experiencing the adventure will allow others to know what it’s really like. If they were to say to us, “So, what’s the big deal? It’s just a big hole in the ground!” that would be insulting. We’ve just experienced a place that is like no other, and to summarize it away in a simple statement does it no justice.
We hope to give the reader a glimpse into the lives of those who give full-time care to others who need special care and attention. We hope to give the full-time caregiver some hope for the long journey. We are talking about those who sacrifice their lives to care for others, the self-sacrificing caregiver, not getting paid to do this job. And, we appreciate the hardworking caregivers who are paid for doing this difficult work, making our load lighter.
We all face daily challenges: Some people are challenged by algebra, some by finances, and others by relationship issues to name a few. But all caregivers face similar challenges. This book addresses the challenges they encounter every day (yes, every day) as they give up their dreams, their free time, and sometimes relationships and careers in order to care for another.
This book is not something younger caregivers could write. They’ve not put in the kind of hours in this type of life experience to see the results of their labor of love, and they are simply too much in the thick of it (and sick of it) to be able to find the time to do so. So that is why we’re doing it. We’ve run the course of caring for a son with special needs who is now an adult, cared for parents with special needs in their elder years, and we’re here to say, “You can make it!”
Having read reviews of other books written within the special needs community, we found that readers had difficulty finding a book that had “the answers.” It’s true that one book won’t give everyone all the answers. It’s also true that no book will give any one of us what we want—a cure so that the person we are caring for can live a healthy, happy life. No single book will work for each of us because every special needs person is different from the next, and every caregiver, family, school, medical facility, community, church, and circle of friends and support is as different as the one being cared for.
One commentary we read summarized a book on special needs by saying that the best the author had to offer was that people with disabilities are just like anyone else and caring for them involves the same challenges we all have. Ouch! If you are a full-time caregiver, you know your life is different from everyone else’s simply because the loved one you care for is so different from everyone else in your life. In addition, trying to “do it all” can put the caregiver at great risk for health problems, compromising the level of care she or he can then provide. We hope the author and reviewer reads this book.
For that reason, we have chosen not to write a technical work but to touch the heart with hope, not to give medical or legal advice but to help shape the thinking process when it comes to various issues and to be informative, practical, helpful, and hopeful by reaching all readers right where they stand.
If you are looking for a cure or an answer to change everything at once (or at all), this book isn’t for you. If you need to be encouraged for today and to make it until tomorrow and maybe get a few ideas to help lighten your load for the long haul
of the journey, then this will be just what you need. If you’ve been wishing you could share what you deal with on a day-to-day basis with others, then this is the book you’ll want them to read. We want to help you gain a healthy perspective that will allow you to go the distance when the distance cannot be marked or calculated. It’s not a sprint but a marathon with no end and no medal. We hope you’ll share it with others when you feel you can’t articulate what you are going through. We know we couldn’t verbalize some things to family or friends, but we have said them here, so others will, we hope, understand the frustrations as well as the joys of caring for people with special needs.
Each chapter begins with several scenarios to start you thinking, followed by our story, and ending with raw, real-life examples that wonderful people shared from their hearts. All names have been changed (except for the members of our immediate family) to protect the identities of the contributors who shared comments of a very personal nature. We thank all who contributed to the section Others’ Stories (round bullet points), sharing their pain, joy, struggles, frustrations, and triumphs with honesty and transparency. We know each comment will help others in their own personal journey.
If you are one who has never cared for someone with special needs, you might be challenged to offer help occasionally. Be careful. This could be dangerous reading. We might see some changed lives along the way! (When you see check marks, those are ideas for you to think about.)
We’ve written in small segments because they were often all we had—and it’s the only way someone caring full time for another person will be able to read it—in small segments.
At the risk of overlooking even one person who has meant so much to our family, we have shared examples where you might find yourself unnamed. You know who you are, and you are very special to us! Each of you has been the how when we’ve asked why.
We’ve come to realize that normal or typical simply does not exist for us. Our specific journey has taken on many facets of color and design in order for us to experience all there is to this life. Normal is only a matter of perspective, and when caring for someone with special needs, our normal looks different from other people’s normal. Once we get into our normal, well, it becomes normal to us! May we all be patient until we find what normal looks like in our individual lives.
Table of Contents
Introduction
Section One: Starting Out
Ch. 1 The Journey Begins with Great Expectations
Ch. 2 Under Construction: Disappointment, Discouragement,
and Death of a
Vision
Ch. 3 Detours and Interruptions in Life
Ch. 4 Rough Roads Ahead: Accepting the Change of Course
Section
Two: Settling In
Ch. 5 Yield Right of Way: Life Is VERY Different for Us
Ch. 6 Road Blocks and Delays: The Long Haul 149
Ch. 7 Road Work Ahead: We are Family 179
Ch. 8 Slow Down Ahead: Everyday Issues 218
Section
Three: Finishing Well
Ch. 9 One Way: Ministry Opportunities
Ch. 10 Merging Traffic: Relying on Relationships
Ch. 11 Next Rest Stop 34 Miles: Stressed?… Rest!
Ch. 12 Fork in the Road: Who Knows What’s Good or Bad?
Section Four: The Rest of the Story
Ch. 13 Emergency Stopping Only: Never Quit
Conclusion
Introduction
When the bright ten-year-old little girl came in for her piano lesson, the teacher wondered why she wasn’t able to master the skill of playing. Months into lessons, the teacher realized the little girl had been practicing on a stiff cardboard facsimile of piano keys.
Without hearing the sound of real music and without feeling the pressure of her fingers on the keys as the sounds were made, she was unable to understand and comprehend fully what it would take to master the skill of playing even the simplest pieces. No matter how much she loved music, she would not be able to play it without the basic instrument.
With like frustration, we were given a child with special needs to care for, and we love him immensely; but we did not know the first thing about mastering the skill of caring for him in a way that would allow him to flourish. We didn’t know what he needed or what we needed. It took us some time to wake up to the needs we had, and we had many! We began the long search for the right individuals (and many were needed) to teach us and help us in our journey. We needed people who had studied for years in helping and teaching others to come alongside us and teach us what they knew. Like going from a cardboard template to a real piano, we were in unfamiliar territory.
According to familycaregiving101.org some fifty million people in the United States care for loved ones over eighteen with special needs, and approximately ten million more do the same for those under eighteen. Some have Alzheimer’s disease (two of our parents did), some Parkinson’s. Some are in state facilities because they cannot be cared for at home, some have muscular dystrophy. Some can’t talk, can’t hear, or can’t walk. Some have a mental illness, but each reflects a situation that interferes with their ability to participate intellectually in comprehension and communication or in relationships. Sometimes you can see it - sometimes it’s hidden.
We have met many caregivers. One of them might be you. As we have spoken around the country for a variety of different ministries, we have shared Our Story of our special needs son and our caring for our parents before their
deaths. We have listened and learned from Others’ Stories. For those from whom we’ve not had the privilege of hearing and learning, we hope you’ll have a chance to tell Your Story and sometime share it with us. We’ve chosen to write thirteen chapters so this book can be studied in an Adult Bible Study (set for a quarter-13 week study) or in a group study with others with whom you identify. Use the questions at the end of each chapter to conduct your self-examination and group discussion.
This book is about the stories we all have to share with hope that others will want to listen and learn, too. If you don’t have a story to share now, hold on! You will, and maybe someone’s story from this writing will help prepare you! We’ve had the opportunity to air our frustrations, share our hearts, open people’s eyes, share our hopes, victories, and failures, express unfulfilled dreams, encourage others, and recognize the value and worth of each person’s life. Maybe along the way the hearts of some will be touched to pray, offer to help, console, ease someone through final days, learn to understand what our days and lives really look like, become a good listener when our hearts are breaking and we are at wits end, go into a caregiving profession to make a difference in the lives of others, or someday care for their own loved ones with hope from those who have shared their experiences here, and for the glory of God.
We appreciate each contributor, reader, caregiver and friend, knowing that you are special to Him and special to us. May we all share together in the joy of the journey.
Starting Out
“SPECIAL NEEDS” are two words that conjure up countless thoughts and emotions.
Webster defines special as “uncommon, noteworthy, particularly favored, individual, unique, extra, additional, confined to or designated for a definite field of action, purpose, or occasion.” He defines needs as “obligation, a lack of something requisite, desirable, or useful; a condition requiring supply or relief; to be in want or under obligation.” One step further requires us to find out what Mr. Webster defines as disabled because some challenge whether particular factors render a person disabled. So for the sake of discussion, and all being on the same page, we’ll go with Webster’s definition, “incapacitated by illness, injury, or wounds; physically or mentally impaired.”
We invite you to visit Joni and Friends, a website sharing a Disability Information and Statistics page, defining a person with a disability as “an individual who has a physical or mental impairment that substantially limits one or more major life activities, a record of such an impairment, or is regarded as having such an impairment.” The population of the USA includes 54 million people (20.6%) living with some level of disability and 26 million with a severe disability. Some 9 million are disabled to the point of needing personal assistance for everyday activities; 1.6 million use wheelchairs, 4.8 million use canes, 1.8 million use walkers, 4.2 million use hearing aides, and 1.7 million use back braces. Of those with disabilities 6.1% are under 18, 6.9% are between the ages of 18 and 24, 14.1% are between ages 25 and 54, 28.4% between 55 and 64. The likelihood of experiencing a disability increases with age - 38% over 65, and 56% over 85. Some 19 million people who were defined as severely disabled do not use a wheelchair, cane, crutches, or walkers. In other words, 73% of Americans with severe disabilities do not use such devices; therefore, a disability cannot be determined solely on whether or not a person uses visible assistive equipment. (Resources on our website will link you to other sites for statistics as well as varying disabilities, mentioned below or not.)
These special needs include those factors that challenge people in their ability to communicate, to think, to move, hindering them from being able to participate normally in learning, basic day-to-day life, and relationship skills. Some special needs are noticeable at birth, some come as a result of a tragic accident, others take time to come into view, and still others in later years result in decreasing reasoning skills accompanying disease and illness. Each disability is different, yet many manifest themselves in like behaviors and mannerisms. The list is long: attention deficit disorder (ADD), attention deficit/hyperactivity disorder (ADHA), dementia, developmental delays, severe allergies, Alzheimer’s disease, amyotrophic lateral sclerosis (ALS), asthma, autism, behavioral issues related to brain injury or birth defects (brain and spinal injury, brain malformations, brain damage, brain disease), BPD (borderline personality disorder now called emotional-impulse regulation disorder or ERD), cerebral palsy, fine motor skills, learning disabilities, premature birth, eating disorders, epileptic seizures, language and speech disorders, mental illnesses, mental retardation, obsessive–compulsive disorder (OCD), oppositional defiant disorder (ODD), oral motor/feeding problems, orthopedic disabilities, sensory integration and motor impairments, speech impairments, spinal cord injuries, spina bifida, traumatic brain injury/head trauma, vision and hearing impairments, including total blindness and deafness, chromosomal abnormalities, birth defects, and cleft palate are only a few off the top of our heads. The list goes on and on and on. The various levels and degrees of each disability or serious health issues with long-term repercussions make the list even longer. Some have several of the listed disabilities, yet the people represented in the previous list (and the disabilities not mentioned) all look for hope and healing in the midst of how each special need reveals itself.
List below those issues that are a part of your life right now or in the past—in your own life or the life of another with whom you are close:
Special needs, as Webster defines them, can be caused by a difficult birth, illness, injury, or wounds. Based upon what you listed above, what caused the situation or issue that challenges you in your life or in the life of someone you have observed:
So Who Needs The Attention?
Special needs—these words have been spoken over and over in our home. Although our son has special needs that have required most of our attention in a “special” way since 1981, we have also added to that loving responsibility our parents (yes, all four of them), whose health issues required special care for varying periods of time. Those needs included caring for them through cancer and all its disabling affects, Alzheimer’s, dementia, mini-strokes, brain aneurysm, massive heart attack, and the therapies necessary to help them regain whatever function was possible. For those counting ailments, we really did have just four parents between us. But in the process, guess what!? We discovered we had some special needs, too!
If you are a caregiver, we hope you are smiling. That means there is hope! You may have even read that opening paragraph saying, “What about me? I have special needs, too!!!” Go ahead. Be honest because if you aren’t, this book won’t really be of any help or value to you. You see, we need to be honest. We need to say, “I’m losing it” or “I can’t take it any more” or “I’m so tired, frustrated, and weary, I don’t know if I can say I LOVE my loved one anymore (at least today)!” OK, do you feel better now? Did you say, “YES! That’s EXACTLY how I feel”? And did you say it in your heart for only God to hear or did you yell it out loud? The answer is important. After all, we wouldn’t want anyone to think we couldn’t handle the heavy load. The less said the better then, right?
Sure, I can handle it. Sign me up!
As Christians whose child has special needs, parents with Alzheimer’s or other challenges, we wanted others to see that God chose the right people for the job because we have a good attitude and right heart. But the facade of the positive attitude and the look that says we “have it all together” or comments like “You sure handle everything so well” and other countless misapplied phrases of which we’ve lost count set us up for total failure. The best one—we can’t resist—is “God must have thought you were very special to handle this challenge because I just couldn’t handle it.” If you haven’t screamed yet, you probably did JUST NOW! We’ll address that one later, but for now—
If you’re tired, frustrated, and weary, you probably said faintly through tears, “Yes, that’s it. I’m at the end of my rope.” Well, my friend, we’ve been there. And unfortunately, we know we’ll be there again. We are here to share with you our challenges, struggles, and joys in the midst of some thoughts and ideas that have helped us not GET OVER IT but GET THROUGH IT!
If you knew how long it took for us to get to the writing of this book, you’d know how much we truly understand that you’ll have trouble getting to read it!
We’ve kept it in short segments because we know that’s how you’ll have to read it. We know—we really know! We’ve been there, oh, by the way—we’re still there! So get ready for the ride! Here we go!
Our Story
We were married in 1979 with the hopes that we would someday have children. We had hopes and dreams of what our children might do, vacation and travel thoughts, retirement wishes. The initial plan was for Cindi to leave teaching high school home economics after five years, which is when our first child Joey was born. Joe had just set up his solo practice in general dentistry, and after a few years business was looking as if it could make us a one-income family. We were on target! We had no debt except for a home and the remainder of his practice. We were paying bills, serving in the church, mentoring and discipling people, enjoying lots of free time with family and friends. Life was good. Actually, life was great.
Then—life happened. And as we have come to find out, when “life” happens, it usually has a twin. That twin is the “opportunity” to look up. After all, when you’re as low as you can be, there is no place else to look but up to God. Each of us will experience our share of hardship, crisis, and disappointment in this life. Many of us will experience more of these “opportunities” than we had hoped! But we have to recognize that each of those experiences is relative to other experiences. Some people, even in similar situations, will have it easier than we do. Some will have it harder. No matter where we find ourselves, we know this: God’s hand has a purpose in every situation—and ours was no mistake. Neither was yours. In Psalm 138:8, the Scripture says, “The Lord will accomplish what concerns me.” This passage has been our anthem. We know He loves us so much that nothing will come into our lives without His wanting us to have it, endure it, live in it, and love through it. And when times get rough, we remember Psalm 57:2—“I will cry to God Most High, to God who accomplishes all things for me.” God has given us what we need. When we are done questioning Him, questioning ourselves, and crying out to Him, we can rest in knowing that He has a purpose in everything that comes into our lives. And we will likely question more. We think doing so is helpful. When we question and He answers, we draw closer to the One who loves us dearly. God uses our lack of faith to expose our weaknesses and deficiencies. We show our greatest strength in the way we trust in the One who sends the trials to our lives.
God uses our lack of faith to expose our weaknesses and deficiencies. We show our greatest strength in the way we trust in the One who sends the trials to our lives.
We will interweave our story throughout the book, but we give others the opportunity to share their stories as well, and YOU will have an opportunity to share your story, too.
Others’ Stories
I often feel at the end of my rope at the end of the day. I would love a resource that could help me see that what I’m feeling is normal and yet give me hope for the future. Caring full time for another person, doing the same thing for them that I do for myself (and more sometimes) is draining.
I sometimes wonder whether there is a purpose in my day-to-day life of caring for another person. Some days I think, “Wow, I really had it together today.” And other times I want to scream and run away from it all.
Watching my sister and her family take care of an adult with special needs is inspiring to me. I see what they do as the ultimate sacrifice of loving another person.
For some years I’ve watched from a distance a family care for someone in a wheelchair. I don’t know what the disability is, but he is always well cared for and the family never seems to get frustrated or upset. It is amazing to me.
My survey sat dutifully in my “to do” folder for about five months. Had I known what these months were going to be like (lots of doctors visits and challenges) I would have simply smiled, sincerely apologized, and not accepted it. Finally, here it is!
Your Story
When was the beginning of the challenge that you are presently experiencing or watching someone else experience?
How are you feeling right now? Are you in a nice place of calm, having weathered
some of the storm, or are you in the midst of that storm? Describe it.
If you are an “on-looker” to someone who is experiencing the frustration and heartache of caring for someone with special needs, what are you seeing in that person? Do you see their frustration or do they look as if they have it all together?
Are they carrying on “just fine” (or so you think) or do they look as if they are ready to explode with all the responsibility!?
Are you carrying any of the burden? If so, how? If not, are you willing?
