For some families, a medical diagnosis for their child puts things in perspective. Parents understand the problems, and start to address them. Clarity about the challenges offers hope for improvement, and parents embrace treatment as a step toward a "cure."
That was not my experience as a young parent. My daughter's life was complicated, nearly from birth, and that quickly became our "normal." We consulted many doctors and specialists, but there was never a clear, all-encompassing diagnosis. With no place to start, no support group to guide the way, I was afloat in a sea of conflicting medical opinions.
I watched other parents. It seemed that their children's medical or learning challenges were identified, treated, and resolved in some way. For us, as soon as I thought I'd figured out one thing, something new would emerge: allergies; ADHD; learning, social, and emotional challenges.
It was hard to understand all the labels, and I struggled with the assumptions I made about them. I had a difficult time embracing anything as true. It took me years to acknowledge that I had a special-needs child, in part because no one could pinpoint what those needs were. I functioned in shallow denial, pursuing therapies, special-needs programs, and countless consultations, losing my expectation to be a "typical" family.
Ten years of uncertainty came to an end when I asked my child's therapist about which of the many diagnoses to tackle first. She pointed me to "the metabolic," and referred me to Kelly Dorfman, M.S., L.N.D., a nutritionist who specializes in working with "complex" kids. Kelly listened to our story and suggested that my daughter had a problem with gluten. I cried when I discovered what that meant. This was nearly 10 years ago — gluten-free was not a trend yet. The gastroenterologist dismissed Kelly's recommendation, but this time I trusted my instincts.
With our daughter on a gluten-free diet, the world changed for my family, opening up possibilities and relieving my heavy burden. By this time, I had three children, each with his or her own "complex" factors. I had been managing it all mostly alone.
My husband also tested positive for gluten sensitivity. Going gluten-free was miraculous, and the cloud my husband had lived under all his life lifted. For my daughter, a gluten-free diet reduced anxiety and improved her rapidly deteriorating eyesight. In fact, in two weeks, she went from "off the charts" emotionalism to the range of normal. For my other daughter, it made severe eczema manageable.
Somehow, removing gluten enabled us to start treating a number of co-existing conditions. We managed the ADHD that was rampant in my household.
I remember the day I realized things had changed, when there was sunshine in the air and hope that a "normal" life was possible. I now refer to it as my Scarlett O'Hara moment. I said to myself, "As God is my witness, no one should have to go through alone what I just went through for 10 years." My journey to support other parents through coaching began the day I realized how alone I had been.
I wanted to support other parents of kids with "complex needs," and that meant going back to school. By this time, my middle child was struggling with reading, so her diagnoses of dyslexia and ADHD came as no surprise. When I started to see the signs of ADHD in my preschool-aged son, who was impulsive and bounced off the walls, I realized that my husband was not responsible for the neurological soup that boiled in my family of five. I was.
Next: My Day of Reckoning