Once upon a time, my husband and I were our son’s sole health care advocates. For the first 4 years of his life, we faced numerous life and death decisions concerning surgeries, medical tests, and treatment. After those dramatic early years his health stabilized, and our decisions about his health care were more run-of-the-mill.
When he was 15, medical tests showed another major surgery was needed. When our son, who had grown into a strong-willed, intelligent adolescent heard the news, he made clear to us and the surgeons that he expected to be part of the decision-making process. At first my husband and I were taken back by his demand. And then we did the math.
In 3 short years, our son would turn 18, at which time he would be in charge of his own health. Therefore, we made everything regarding his upcoming surgery–the pre-op tests, doctor consultations, even life and death decisions–into a self-advocacy training exercise. Here’s what we learned about raising a health care self-advocate during that experience and as our son entered adulthood.
- Write down your child’s medical history. You may remember what treatments (for physical, mental, and emotional ailments) your child received, but your child won’t. Our son has no explicit memories of the tests, treatments, and 7 surgeries he went through before he was 5. So when he was a young adult, I wrote a narrative that included the hospitals where the surgeries took place, the doctors and surgeons who treated him, and anything else I could remember. That medical history equips him to be a health care self-advocate. Resources like The Caregiver’s Notebook can make that process easier.
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