How to Raise a Health Care Self-Advocate

Do you want your child with special needs to be a health care self-advocate? Here are seven ways to increase a child's self-advocacy skills.

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.

  1. 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.

To read the rest of this post, visit Key Ministry’s Special Needs Parenting blog.

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Do you want your child with special needs to be a health care self-advocate? Here are seven ways to increase a child's self-advocacy skills.

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2 Comments

  1. June 27, 2017    

    Oh, I can’t believe I somehow skipped number 7. I do need to start turning over the reigns.

  2. June 28, 2017    

    It’s hard isn’t it Maree? But oh so necessary! Jolene

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Meet Jolene

Jolene Philo is a published author, speaker, wife, and mother of a son with special needs.

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