How and when to advocate for your child with special health care needs

When my daughter was born, 19 years ago, she was whisked off to the Neonatal Intensive Care Unit at Children’s Hospital due to concerning respiratory and digestive symptoms.  We quickly learned that she had many special health care needs that would require us to learn some new parenting skills.  I was told “You’ll have to speak for your daughter as she will not be able to speak up for herself.”  My response was, “I don’t want to!”

Advocating was not something that I had planned to due when I read the baby books during my pregnancy.  While I learned these skills because of Emily’s special needs, any parent can help their child be their healthiest by trying these suggestions.

  1. Keep good records!  You can write the dates of doctor appointments and illnesses on your calendar, but you may not have access to the calendar after the year is complete.  Track appointments, vaccines, any accidents (stitches, broken bones, etc.) or major illnesses in a permanent record. For ideas or help with how to track information, contact the Daniel M. Soref Family Resource Center at Children’s Hospital. Also, many pediatricians record vaccines with the Wisconsin Immunization Registry. You can check for updated records by clicking on the link above.
  2. Don’t be afraid to ask questions.  If you hear a word you don’t know or aren’t sure about, ask what it means and how it is spelled.  Write it down so that you can refer to it later.
  3. Bring your list of questions to your doctor appointments.  Your child’s primary care doctor is concerned about their overall development; emotional/social, cognitive and physical.

Providing family-centered, compassionate care is team work!  Parents and their children are part of that team.  We respect the knowledge and expertise of our doctors and they respect the knowledge and expertise that we parents have of our children.

Over time, I’ve learned to advocate respectfully and knowledgably for my child.  It has helped me to grow as a parent and as a person.  You can do it, too!

~ Julie Turkoske, Information & Referral Specialist, Southeast Regional Center, Children and Youth with Special Health Care Needs

Comments

How and when to advocate for your child with special health care needs — 2 Comments

  1. This is so refreshing to read on a hospital website.
    People are often afraid to ask doctors any questions in fear that their “challenge” might irk the doctor.
    However, everyone has the right to question a treatment or procedure.
    Doctors are not omniscient and can make mistakes. They might not be aware of the entire patient history or perhaps are resorting (for whatever reason) to treatment that has a less invasive alternative.
    Patients can and should be educated and should be made to feel a part of the medical decision making process.
    Doctors who feel challenged by this, should take a class on interpersonal relationships or something that will help them deal with questions that they feel challenge their authority.
    This blog post, really opened up the topic nicely.