Behavior — one of the most frequent and perplexing challenges that people experience in all walks of life — can become even more prominent following brain injury. Many times behavioral challenges are associated with the person who had the brain injury. However, behavioral challenges can also be associated with any other person who is involved in the situation, including spouses, children, friends and relatives; even therapists and programs. In all cases, someone somewhere is experiencing some sort of difficulty and either they or someone else wants to change it!
This book is designed to help you better understand what behavior is and how it can be affected not only by brain injury but by other events and circumstances. This includes other people, places, and resources. You may be new to the world of life with brain injury, or well experienced. You may or may not have adequate resources to address the challenges that you face. Your life situation may be stable or chaotic. There is no doubt that the specific needs and abilities of the individual who experiences disability are unique. In fact, expanding on the frequent statement that no two brain injuries are alike, it is just as accurate to say that no two situations, groups of people, sets of resources, or the lives of all who are involved are alike.
Everybody has “behavior”
This book will help demystify the phenomenology of behavior and help everybody learn to work together more successfully. Again, while it may be customary to focus on the person who directly experiences disability following brain injury, others such as family members, friends, those providing direct care or treatment, co-workers and people in the community can be equally susceptible to behavioral challenges as well as successful behavior change. It is just as important, if not more important to focus on personal strengths and abilities in order to help all parties establish pathways to success.
You will probably find this book most helpful after initial hospital discharge or later, as people are trying to put their lives back together. It is a time when many people begin to understand that brain injury is not just a medical problem, but an enduring challenge that affects almost all aspects of each person’s life, forever. It is also a time when people are catching their breath and moving from a state of shock and confusion and beginning to problem solve. The concepts contained in this book may assist you and others who are involved across many topics and many years.
Everybody is affected
This book is not a “quick fix” that provides you with 10 magic formulas or potions to change other people’s behavior whether they want to or not! Somewhere along the way I lost my magic wand and forgot the supernatural chants to do this! As you will see, effective behavior change involves collaboration and coordination by all involved parties. You will discover that it is almost always more important to focus on helping all parties achieve success, than to focus on what somebody should not be doing. Assumptions that behavioral techniques are designed to make people do things that they don’t want to do are simply incorrect.
Find a better way
This book focuses on helping people succeed rather than stopping people from doing “bad things!” Yes, there are times when a person is involved in something that needs to be stopped for their immediate safety or the safety of others, but this is usually the exception rather than the rule. Instead, we typically find that problem behaviors occur because the person does not have a better way to accomplish their goal. Find a better solution and the problem is usually resolved. Emphasizing what to do over what not to do offers everybody tremendous benefits. For starters, it recognizes the dignity, rights and responsibilities of everybody who is involved.
This book is unlikely to answer all your questions or solve all your problems. After all, it is only a book! If you're facing situations that are extreme, dangerous or threatening for you or others put this book down immediately! Get professional help right now! In other words, don't play with fire!
Living with Brain Injury
Life is extremely complex and life with brain injury significantly adds to daily challenges. Any book can only begin to scratch the surface. You will probably find that there are a number of issues or quandaries that this book can help you address or at least better understand. However, depending on what you are facing, the complexity of your life, your available resources, and other important factors you may still need help from others with proper experience and/or training to address some of your challenges.
Finding properly skilled and experienced people or programs can be difficult depending on where you live, your resources, and the challenges you're facing. It is important to distinguish between a person with a professional degree and a person who has proper qualifications and experience to meet your needs. For example, not every psychologist, physician, case manager, or therapist has the qualifications, training or experience to serve people who experience disability following brain injury. Sometimes the help you need will not come from an individual with formal professional training. It may come from within your family, friends, or somebody else who has walked this path before you. As noted later in this book, your most crucial assistance will often come from your circles of support. Finding the right people or programs to help you when you need such assistance is an art in itself and there are no explicit rules or guarantees — only guidelines. This is where meeting and networking with others in similar situations can offer immense benefits as can continuously evaluating your situation and program effects. We will discuss this in greater detail near the end of the book.
Whether you decide to collaborate with others or go it alone, this book can help you understand the multitude of factors that influence behavior for all people involved in life with brain injury. It can also help you better collect your thoughts, organize your information, and provide a framework on which to develop your success.
How to Use This Book
Some people may choose just to read the chapters in this book. However, you may find the book more useful if you both read each chapter and fill out the accompanying work book assignments. By doing this you will be able to better understand and explain your current situation. Make sure that other people participate in this process, especially the person with the brain injury and others who are closely involved. The facts and perspective that each person brings are critical to this process.
People also often seek answers without asking the proper questions. Unfortunately, the solutions they arrive at in such situations often have no resemblance to the results they are seeking. Like many things, success begins with proper preparation. Hence, a good portion of this book is devoted to fact finding. Spend time to better understand some of factors associated with behavioral challenges following brain injury. You will likely find that many “solutions” become readily apparent. When we don’t have a good idea of why or where we’re going, we easily get lost. We are more likely to reach the destination when we prepare for the journey ahead of time. In this case it involves taking the time to understand the factors contributing to life’s challenges when a brain injury is involved.
Each chapter covers a specific topic. Typically after reading a chapter, you will be asked to turn to the Workbook to fill out specific information about the material you just read, as it relates to your case or situation. This combined information will help you and others develop the proper perspective and plans of action to address the presenting challenges.
Unfortunately, there are no short cuts and filling in the required information will take some time and effort. Some of the information may be readily available. You may have to review old records or talk to other people to fill in some of the other information. This will be time well spent as the process will help you put together a very comprehensive picture of present needs and abilities. This information is critical in creating viable solutions.
The workbook exercises, just like the text of the book strongly emphasize people’s abilities. Too many needs assessments and case formulations focus on what a person cannot do or has lost. This is important. But, it is even more important to fully understand what resources and abilities are present to build promising futures. Almost nobody gets by in life on what they can’t do. Life with brain injury is no exception! It is clear that we have to be aware about both personal and congregate limitations, but this awareness alone is inadequate to create a foundation for success.
References and resources
Finally, the reference section at the end of the book contains a list of other topical resources that you may find valuable for additional information regarding specific areas of interest Use as many resources as you can access through other people, programs, publications, internet resources, etc. Make sure that you verify uncertain or dubious information through second sources. Remember the carpenter’s adage of: measure twice and cut once, as a way of avoiding mistakes.
Seeing the Big Picture
Please understand that no one book or any person can successfully address all challenges. You will find this book’s approach helpful in a number of cases and it may also integrate well with other past or current resources. While the book focuses on “behavioral” issues, you will quickly see that this incorporates cognitive, neurological, medical, physical, sociological, cultural, community, ethnic and many other factors. Sometimes people get confused in a debate of behavioral versus cognitive intervention after a brain injury. This is a moot and erroneous argument. As you will see in the next chapter, behavior is the product or result of all of these factors.
Now let’s begin!
The workbook is suitable for use by families, people with brain injury, caregivers and therapists. Some concepts are very easy; other material is more complex. Some readers will be able to get through this workbook on their own. Others will find they need guidance and assistance from clinicians. Every person is different.
This workbook can also be used by therapists and caregivers in rehabilitation programs, community settings and private practice. It provides you with information to better understand the full meaning and impact of behavior for everyone after a brain injury. The worksheets and activities can be used as tools to help individuals, families and clinicians apply the information and improve the meaning and fullness of life after brain injury.
Now, please turn to Section 1 of the Workbook. The purpose of this section is to fill in some basic information about the person who experienced the brain injury. In future chapters, you will be filling out information specific to the material presented in those chapters.