We were the couple who waited until we were on solid financial ground to start a family. We read every parenting book available and practiced lamaze religiously. I was the pregnant mom who ate right, exercised daily, was committed to breastfeeding, and didn’t miss a dose of prenatal vitamins or a doctor’s visit.
Never in a million years did we expect our baby to fail the Apgar test.
But he did. He was small for a full term baby and produced an over-abundance of mucus. His breathing became labored so he was transferred to a larger hospital where doctors discovered he had esophageal atresia (EA), also known as tracheal esophageal fistula (TEF). Translation: His esophagus came down from his mouth and formed a blind pouch. It came up from his stomach and hooked into his trachea.
Never in a million years did we think our baby travel by life flight without us.
But he did. He was flown 750 miles away for surgery before he was 24 hours old. He lived, and we caught up with him two days later in neonatal intensive care (NICU). We were given a beginner’s course in special needs parenting and began to care for our tiny boy whose body bristled with tubes, needles and monitor wires.
Never in a million years did we expect to become effective advocates for our child.
But we did. Once we learned that to be effective, we learned to do four crucial things well. If you’re the parent of a child with special needs, you can become a more effective advocate by focusing on these four skills, too.
Use a notebook to document observations and information about your child. Jot down questions to ask at appointments and record the answers. If you don’t understand something, ask for clarification immediately or by email later.
Seek a second opinion if no standard course of treatment with a proven track record exists. Use children’s hospital websites to learn about your child’s condition. Also, visit the parents’ library at the children’s hospital. Ask the doctor for reading material and recommendations and attend parent workshops and conferences.
Use the notebook mentioned above to organize what you learn. If that’s not enough, add a three-ring binder, file folders, or clearly labeled electronic folders on your computer. Or visit the Seattle Children’s Hospital website and download their Care Notebook.
Above all, remember that your first prioity is to parent your child well. To do so, you need to remember to put people ahead of tasks. You’ll be a better advocate if your day blends research and organizational tasks with family time.