Lessons from a Complex Child

I write this book to tell you our story, a story of a journey with a healthy beginning, frightening middle, and a fortunate outcome. At twenty-nine months, my son, Jackson, had met all his developmental milestones. He spoke in full sentences, knew his ABCs and colors, had well-developed fine and gross motor skills, was affectionate, had perfect eye contact, loved to talk, and was extremely social. Six months later, just after Jackson’s third birthday, neurologists couldn’t rule out that he might have a malignant form of epilepsy, some form of neurodegenerative disorder, have regressive encephalopathy, be autistic, or have a pervasive developmental disorder (PDD). What could possibly have caused the regression he experienced over a four-month period, the irritability he was exhibiting, the sixty to eighty seizures he was enduring each day, and the autistic-like behaviors he had developed? Although I’m not a physician and don’t work in the health care profession, I have lived and worked through the regression and recovery of my own child. This experience has led me to form the opinion that, potentially, too many children are being put on the autism spectrum. Some children, like Jackson, with ASD like symptoms are not autistic and therefore are not receiving the full breadth of intervention that could potentially help them recover. Do I have proof of this? No, because from my experience, and up until this point, there has not been enough research, that the medical profession recognizes as reliable, made available to the public or to parents like me to identify the root cause of some symptoms. The purpose of my telling this story is not to give anyone, or any family, false hope but, with good reason, to encourage you to leave no stone unturned in treating a medically complex child. It takes passionate determination and tenacity to find underlying and seemingly hidden causes of complex illnesses and to see the journey through to recovery when possible. I tell my son's story: First, because I believe in a parent’s intuition. In the absence of a clear and compelling answer, it is important to question any diagnosis given your child. Parents of a child with complex medical concerns have to find the stamina, intelligence, faith, and assertiveness to partner with medical professionals and other experts, without surrendering their own accountability and insight into their child’s development. Second, because as a parent or legal guardian, you are the most important advocate your child will ever have. No one else will love your child, ache for your child, or fight for your child the way you would. Regardless of your child’s particular needs, most other people won’t ever see him or her as the perfect and divine little soul that you see. You do not have to settle for any service, service provider, or advice that you believe does not have your child’s best interest at heart. Learn from the less-than-optimal experiences and move on. Third, because I hope to encourage even one other parent, physician, teacher, or therapist to look beyond the obvious and dig as deeply as needs be to help recover a child. I hope Jackson’s story and the information in this book will offer some new and enlightening perspectives to parents and to those who work with, but have not raised, a medically complex child. The first rule is to do no harm to a child; the second is to be open to new research and alternative therapies. We have a public health crisis on our hands with allergies, ADD/ADHD, and autism spectrum disorders; common sense tells us that what we’ve always done isn’t working anymore. Finally, because I want to validate for parents and caregivers that many paths in helping a medically complicated child recover or redevelop are long and seemingly blazed alone. Knowing that you are not alone and that others—myself included—have navigated similar paths before you, can help mitigate what otherwise can be an overwhelming volume of research, confusion, fear, sadness, heartache, loneliness, anger, joy, love, and sheer emotional and physical exhaustion. I can also confirm for you that life goes on, with all of its demands, additional responsibilities, and pleasures, despite your individual situation. I will be indebted forever to the amazing people who worked with Jackson and who dedicate their lives to caring for us and our children. Almost every one of them worked diligently and tirelessly to help him recover, but no one worked as hard as Jackson.