Parenting children with special healthcare needs magnifies the results of effective and ineffective parental/caregiver responses. Raising a child with a chronic illness involves an often-confusing state of mixed uncertainty, apprehension, and heightened responsibility. I have had a special interest in medical genetics and children with special healthcare needs throughout my entire career, and, until now, have never come across a book or program that truly meets the needs of these families. One of my mantras for many years has been, “Don’t disable a child with disabilities!” As this book points out so clearly, these children, even more so than children who are not obviously medically impacted, need to be confident, competent, respectful, responsible, and, ultimately, independent.
As with nearly every pediatrician, my patients have taught me as much as I have taught them. One of the most powerful messages delivered to me came from a young couple I met during my first year in my office in California. I attended the delivery of their first child, a beautiful baby girl named Christine. As I examined Christine in the delivery room, I found, sadly, she had a severe case of spina bifida, a neural tube defect that occurs in the first month of pregnancy when the spinal column doesn’t close completely. The young mother, Dawn, was a physical therapist at our local children’s hospital, and knew immediately that this meant multiple surgeries, including the placement of a shunt for associated hydrocephalus, a lifetime in a wheelchair as a complete paraplegic, and a myriad medical problems that go hand-in-hand with this diagnosis. I was devastated by the finding, and had more than a little anxiety as I approached Dawn’s room to update her and her husband on Christine’s progress, as she was already about to have the first of many surgical procedures. Dawn’s first question, delivered more as a statement, was, “What’s next? Let’s get going.” I was immediately buoyed by their steadfast feeling that this problem would not prevent their daughter from attaining any goal.
I have now been blessed to share the past 20 years watching Christine grow into a delightful young lady with a can-do attitude. She is resilient, confident, and fiercely independent. She has become a superb student, a national wheelchair basketball player, and a responsible adult who lives life to the fullest. Christine’s parents seemed to know instinctively that teaching her to become responsible for caring for herself would ultimately be their greatest gift. Their house had no pity, but it did have empathy, and enormous amounts of love and encouragement. Unfortunately, not every parent of such a child instinctively knows how to teach responsibility. I have many other sad stories of parents who have unintentionally made the way for their special child even more difficult by using ineffective parenting skills. The past 20 years as Christine’s pediatrician have been a wonderful journey and I wouldn’t have missed it for anything. I am grateful for a resource that organizes, clarifies, and gives examples of the parenting skills that helped Christine grow into a beautiful, productive young lady who is responsible, respectful, and a joy to be around.
By Tracy L. Trotter, MD, FAAP Pediatric & Adolescent Medicine
Tracy Trotter, MD