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Supportive Parenting

Supportive Parenting

Becoming an Advocate for your Child with Special Needs

Jan Starr Campito

Paperback: £15.99 / $26.95

2007, royal, 256pp
ISBN: 978-1-84310-851-1, BIC 2: JNSP VFJD

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Chapter 1: Why This Book?

Welcome. If you have picked up this book, you are probably wrestling with some serious issues concerning your child. Perhaps you are scared and worried, beginning to realize that you need to explore the warning signs you are getting about your child's development. Perhaps you are grieving and scared because your child, who you love so much, has recently been identified as having some sort of special needs. Perhaps you are angry and frustrated because your child's school isn't meeting his or her needs. You've tried asking for more help, but nothing seems to work, and you don't know what to do. Perhaps you are just feeling overwhelmed and tired of fighting for your children.

You are not alone. You are in the company of many, many people who are trying everything they know (and then some) to make the world the best possible place it can be for their kids. We're normal, loving parents; it's just that parenting is a little more involved for us than "normal." We're parents of kids who have special needs.

My husband, Mark, and I have two sons: Marcus, age 13, and Michael, age 11. At two-and-a-half, Marcus's speech was very difficult to understand, and his coordination and physical skills were different enough from his peers that we sought formal evaluation. We knew from our pediatrician that Marcus had low muscle tone, poor coordination, and speech articulation difficulties. We were totally unprepared, however, for the diagnosis we received from the developmental specialist: Asperger's Syndrome. Asperger's is a type of high-functioning autism. It is a pervasive condition, affecting language, social relationships, and those cognitive abilities that are called "executive processing skills." This diagnosis meant more than just a description of our child's difficulties. It was an entry into a new way of being for all of us. A few months after leaving the specialist's office, we entered the world of Early Intervention to begin the process that would obtain for us the support services that we so needed in our lives.

In comparison, Michael's development seemed to be progressing much more smoothly than his older brother's. Past experience, however, taught us to recognize subtle warning signs with speech articulation and hand coordination in him as well. Just to be "safe," we began investigating Michael's development at age two, and found that he also was showing some significant, although "spotty," developmental delays requiring therapeutic intervention. Later, at age six, Michael was diagnosed with Attention Deficit Disorder (ADD)/Inattentive Type, and a mild Central Auditory Processing Disorder. Still later, neuropsychological evaluations confirmed that although my son is gifted intellectually, he also has significant executive processing difficulties, and many autism spectrum characteristics. After Michael recently experienced a bout of clinical depression at age ten, I realized that we still do not have a total understanding of the complexities underlying Michael's abilities and disabilities. But that's true of all children: as they develop, new characteristics sometimes unfold.

In the ten years since I officially entered the world of parenting children with special needs, one or both of my boys have received speech therapy, physical therapy, occupational therapy, auditory integration training, vision therapy, play therapy, and most recently, social skills training. At the height of our intensive early intervention, we had 17 therapies going on every week. The boys have made incredible progress and have graduated, at least for the moment, from the need for most of their therapies, although I am always vigilant for signs that may need renewed attention. My home interventions with my children, however, remain extensive. Ours is a success story. My kids are usually happy, and function quite well given the proper support. It's the "given the proper support" part of the statement that this book is about. How do we, as parents, identify and acquire the supports needed to help our children blossom? How do we advocate for our children to make sure they receive the help they need? My goal in this book is to help you answer these questions for your own child and family.

Despite the marketing claims of some experts, there is no official owner's manual for how to parent children, even when our kids are "normal." A peek at any playground or classroom confirms the obvious: there's a tremendous range of individual differences among children, even those of the same age or those raised in the same family. But the differences are not just between children. A look at parents also reveals a tremendous range of parenting styles. Parents differ in their backgrounds, goals, and preferences, and these characteristics affect child-rearing decisions. Are some parents getting it right and the rest of us, who differ from these "ideal parents," not? I doubt it. Although some parenting practices are clearly better than others, a lot of what is "good" needs to be looked at closely to see if it is good for your child. I would argue that "the" proper path for a child, and "the" parenting or teaching style, that would hold true across all children, probably doesn't even exist. One model of car certainly isn't best for all family incomes and needs. In the same way, what parenting choices are best really depends a lot upon your family's situation and values, as well as your child's abilities, personality, and interests.

Parenting is a difficult job to do well. Parenting a child who has special needs adds another layer of complexity to parenting decisions. Our kids don't come with God-given labels identifying each of their disabilities, explaining what the disability is, and detailing how it will manifest itself in our particular child. Nor, unfortunately, do our children come with instructions on how best to support their healthy development. Seldom in the past ten years, has it been obvious what I should do with my kids, or when I should do it. When it comes to parenting my children, I live in a world of gray areas. Asperger's Syndrome, for example, has only become widely recognized as a disorder in the past 20 years or so. Researchers and clinicians are still working to understand it. The educational system is even further behind in this process. This is often true with disabilities-not because schools are incompetent, but because the medical aspects of disabilities are usually explored before the intervention aspects. We don't always know enough about intervention alternatives to make informed choices. Even if I wanted to try all the therapies possible to see for myself how much they could help my children, my own time and financial resources-not to mention my children's time, energy, and tolerance-are limited. We can't do it all. We have to make choices, and the choices and their consequences are seldom laid out for us in black and white.

In fact, the world of special needs is gray from the beginning. Your pediatrician will look for developmental checkpoints to see if your child is developing within the normal range. But what if your child is hitting some checkpoints on time, and not others? This certainly was the case with my boys. And what if the delays are not forming a consistent pattern over time? A lot of disabilities are not obvious, especially in the early stages, and pediatricians are understandably reluctant to alarm parents, or to advise intrusive testing or consultations with experts until they are fairly sure the child has a developmental problem. Right from the beginning, you may find yourself bogged down in a morass of questions, looking for answers that are difficult to come by, and less straightforward than you crave.

When my husband and I initially realized that our first-born son was not following a typical developmental pattern, we were devastated (as I imagine most parents are when they discover problems are in store for their loved ones). It took time to recognize that actually, in some respects, we were fortunate. I taught full-time at an excellent local college. My graduate training, at Yale University, was in cognitive developmental psychology and I had eight years' experience teaching child development, adolescent development, and educational psychology courses to undergraduate and graduate students. Although not specifically in the area of special needs, my field of training provided relevant background knowledge, and people tended to listen to me with respect. I had colleagues who taught special education courses in graduate programs, and I could call upon them for advice and help with networking with other professionals. Mark and I met and married when we were older and more secure in our finances. He has his own successful, international business. We could more easily afford a wide range of intervention options, including my staying home for a while, when we decided that would best help our children.

Despite all of these advantages, entering the world of special needs threw us for a total loop. I am normally a competent and outspoken woman, but suddenly I found myself depending totally upon the knowledge of others, and passively accepting their advice. My normal approach to almost anything in life is to ask questions, seek explanations and elaborations, and actively pursue knowledge, but now I found myself just listening, trusting, and obeying. I was in a foreign land, these were the experts, and I would do what they said to help my sons. Does this sound familiar to you? I've heard similar attitudes expressed by others who've had to start this process. We feel lost, without the knowledge we need to help our children. Even for those of us with relevant professional knowledge, the world looks different when the problems are your child's, and you are the one consulting the experts.

It took a while for me to realize that trusting and following the experts' advice was not the way to go! Exactly because I wanted to do the best possible for my sons, I could not continue in this passive, accepting attitude. Although, admittedly, the subject matter was new, I had to do what I had always done. I had to go back to using my own intelligence and following my own instincts. I had to research, question, gather my resources, and pull everything together in a way that made sense to me. If a therapeutic approach didn't make sense to me, how could I entrust my children to it? How could any parent? And if I could so completely lose my voice in a situation with such high stakes, what about the parent without my advantages? I can't tell you the number of impromptu conversations I've had with worried parents who would spontaneously share with me, simply because I was a willing and sympathetic listener, that their son or daughter had recently been identified as having special needs, and they were wrestling to get the help they wanted for their children. It was in those conversations that I realized how much of a leg up my developmental training had provided me, and how much I have learned over the past ten years of living with my children and their needs. I listened to parents who were hurting and lost-hungry for guidance on what to do or how to do it, or just wanting reassurance that they were not the only ones struggling. We'd talk while our kids played, and they'd sometimes follow up with phone calls to my home. I realized that in living and breathing in my children's world, I had gained a lot of experience, the hard way, and that sharing my training and experience seemed to help other parents. So I decided to write this book. I almost entitled it Things I Wish Someone Had Told Me, because that's what it is. I hope it can help you feel less lost and more in control of the decisions you will have to make about how best to deal with your child's needs.

Throughout this book, I invite you to filter my words through the knowledge and wisdom you have gained from dealing with your own children. Our situations may vary in severity or type of disability, but I believe that the desire to speak up for our children is something we share in common. I will not presume to tell you what you should do. Even for my own children, although I can anticipate some of their future needs, I do not know what challenges will arise next month, or even next week. But I have developed a set of strategies and a proactive mindset for dealing with whatever those problems may be. It is "advocacy as a way of life," that I will describe to you in the pages that follow. I invite you to create your own version, molding it to fit your particular family values and vision. As you'll see in the following chapters, autism spectrum disorders require a particularly intense type of parent involvement. Other disabilities will vary as to what they involve. The one advantage in having dealt with such a wide variety of issues for my children, is that I can offer lots of examples of different types for you to think about for your own.

My sister-in-law called some time ago, to ask my opinion about her own son who had a developmental disability. He was transitioning from having therapies provided by individually contracted providers, to having them provided by the publicly funded school system. As I spoke with her, I realized that as important as this transition was for my nephew, an even more important transition had already happened, within her. Like me, she had made the journey from being a parent who looked to be told what to do, to being a parent who asks questions and vigorously advocates for her child. We still consult the professionals, but we don't give up our parenting responsibilities, and we don't take lightly our own unique knowledge of our children. We are experts in our own right, and we seek to apply that expertise to this new territory that our children's lives now include. Our children's welfare matters to us. We seek not just to respond to situations as they arise; but also to anticipate them. We research and we plan. We run obsessive double-checks on those things that could have been misunderstood, overlooked, or neglected. We ask others for advice, but we do so ready to decide for ourselves how this advice meshes with our own views of our children and their needs. It is this immersion of oneself in the process that I mean when I encourage advocacy as a way of life. I offer this book to you in the hope that it will help you also, to make that transition from passive acceptance, to active-and even proactive-involvement.

How to use this book

I have organized this book into 11 chapters, discussing the sorts of issues my husband and I addressed as we began to recognize and deal with our sons' needs. Feel free to turn ahead to those chapters that correspond to where you currently are in this whole process, but at least skim all the chapters. You very well may find, as I have, that just when you think you have things settled with your child, you have to backtrack and re-diagnose, or add new dimensions or therapies to your current repertoire. Similarly, although the book is laid out in a linear fashion, as is necessary when dealing with printed text, the issues addressed in various chapters overlap. I offer a wide variety of examples from my experience, to encourage you to look with fresh eyes at your own children, perhaps to gain ideas for approaching current difficulties, or even to re-examine old problems that may have been only temporarily settled for you.

The next chapter, Chapter 2, is on pre-diagnosis, the time when you first start to suspect that the difficulties you are experiencing with your child may be outside the realm of typical parenting concerns. You want to do what is best for your child, but I understand your hesitation to open the scary door that leads out of the familiar. In this chapter, I help you face your worries and explore the questions you are likely to be raising. Chapter 3 then walks you through the process of obtaining an evaluation and an official, clinical name for those difficulties your child and family are experiencing. A formal diagnosis can be very liberating. It helps you make sense of what is happening with your child, and it is the doorway into help. However, the process of seeking a diagnosis is a very difficult and emotional one for parents. Therefore, I also include in this chapter an extensive discussion of feelings-both the complexities of your own, and the emotional reactions you are likely to encounter from people around you.

Chapter 4 begins to discuss what to do with your child's diagnosis. It addresses finding out what those formal-sounding words really mean, how the condition is manifesting in your particular child, and what treatment options are available. Learning is hard work, all the more so when it is learning about something so important for your child's well-being. In recognition of this, I also offer emotional strategies for supporting yourself as you work to learn more about your child's diagnosis. This chapter also discusses talking to your child about his or her disability.

Chapter 5 discusses beginning therapeutic interventions with your child. It discusses how to select and schedule therapists, and your role in the therapeutic intervention process. I am a strong proponent of parental involvement, and have found that the more knowledgeable I am about what is going on in my children's therapies, the better advocate I can be for my children. Because therapies are not the only types of supports your child may need, this chapter also includes a discussion of other types of resources and funding sources you may wish to explore.

In Chapter 6, I use the last ten years with my son, Marcus, to show how the manifestation of a child's disability can change over time, and how our supportive parenting efforts need to change in response. You may feel overwhelmed by the advocacy task ahead of you, and so this chapter illustrates the concept of prioritizing, or identifying and focusing one's parenting energies on those issues that are most important at any given time. This chapter also demonstrates an important thing to keep in mind: kids change; skills can improve; abilities develop. Each year brings new struggles, but every year I also have the thrill of seeing how far my children have come. Mapping Marcus's change over ten years had another, unexpected effect as well. As I proofread this chapter discussing the patterns we saw in Marcus, I realized that those same patterns apply to my second son, Michael, as well. I am now convinced that Michael's developmental path also falls on the autism spectrum, although I believe his unique strengths and the supportive parenting in our household often keeps his diagnosis skimming just under the surface, often unrecognizable except in times of stress.

Chapters 7 and 8 discuss the implications of your child's diagnosis for parenting your child. I firmly believe that one reason my boys have blossomed is the work I have done to ensure they are supported in all areas of their lives. Basically, this has involved a push on two fronts: home and school. I have teamed closely with a variety of teachers and therapists to provide strong educational supports. But I also take full responsibility for creating a welcoming and supportive home life for my children. The remaining chapters of this book discuss this two-pronged approach to supporting your children in both home and school. Not only do I try to extend the knowledge and approaches I learn from therapists into our home, but I am also constantly watching and experimenting on my own, to learn from my children what works to meet their needs. My expertise on my children has strong, deep roots in this way of life at our home.

Chapter 7 looks at how to structure your home for your child's success, and it helps you understand and manage problem behaviors. Actually, this chapter could equally apply to parenting any child supportively, whether or not they have a diagnosis. In it, I include specific examples to help you understand your child's perspective. Our children are often dealing with many other issues that typically developing children never have to face. Understanding their needs is key to creating home and learning environments that are part of the solution, instead of part of the problems facing our children.

Chapter 8 looks at working to support and to build your child's strengths. It introduces the concept of scaffolding, which involves working to support your child's functioning at his or her highest level. Several teaching strategies are also discussed. One of these is task analysis, by which one can break any task down into its component parts, and then identify and train those parts causing difficulty. Providing supportive assistance, or scaffolding, is also discussed as a teaching tool, as well as the effective use of modeling and practice to help a child learn. Homework and other examples are used to illustrate these concepts.

Chapter 9 is designed to help you navigate the special education labyrinth and work with the schools to create a welcoming and supportive learning environment for your child (for readers elsewhere, please note that I use the US model and terminology as an example here, and the special needs education system will work differently in other countries). Yes, the process is complex, and quite daunting, but armed with your newly heightened awareness of the things you can do to advocate for your child, you will be more likely to hold your own as you work with your special education team to develop an Individualized Education Plan (called "IEP" for short, and sometimes termed Individualized Education Program) to help meet your child's needs. This chapter describes the parts of the IEP, and the collaborative process by which the IEP is created. It also discusses what you should look for in the resulting product, and how you can work to make the special education process best work for your child.

Chapter 10 is where I spend most of my advocacy life nowadays-monitoring and following up on the provisions set in place in my sons' IEPs, and working to adjust those plans as new complexities arise. Your child's special needs are not static. They will change as she or he grows, and they will change as the demands of his or her environment changes. Monitoring these changes and ensuring that appropriate supports are always in place for your child is a continuous and vitally important task. Chapter 10 also includes a section on conflict and how to deal with it. Interestingly enough, although I am often quite assertive and vocal in requesting change to meet my sons' needs, I actually seldom see myself as being in conflict with others. Rather, my view of advocacy is that I'm providing information and a perspective that the professionals who teach and work with my children, need to know. I'm providing a service, not only for my children, but also to those who have as their jobs the responsibilities of helping meet my sons' needs. My attitude is that we are partners working together, and the professionals need my input as much as I need theirs.

Chapter 11, the final chapter of this book, revisits the notion of what advocating for your child means. Advocating means more than doing things for our children. It also means helping them become more competent, independent, and able to do things for themselves. This chapter includes a discussion of helping our children prepare for adulthood and become strong advocates for themselves. This chapter describes some of the cultural and political issues likely to shape our children's world. Finally, I discuss the many faces of advocacy and explore some of the other things you may do if you wish to take a larger, societal advocacy role, such as forming a parent advocacy or support group (or writing a book or article on your own experiences!).

Before we move to the next chapter, I'd like to add a personal note. I was nervous when I broached to my husband my desire to write this book. After all, as I share with you the knowledge that I've gained over the past ten years of my life-it's not only my life I'm describing, it is his and those of our children. My husband is a very private person, and I appreciate his willingness to let me share with you some of what goes on inside our home. I wish you could meet our boys; they are great kids. I'm sure I'd enjoy meeting yours, too. As you read some of the details of what we have done to try to help our children, I invite you to keep your own children firmly pictured in your mind. They are the ones for whom we do all this. And they are worth it.