Chances are you can remember a time when the health care system did not seem to take your concerns seriously or provided care in a way that hardly seemed “caring”. After all, the “system” is huge, so it is not always easy for one patient or parent to be heard. If this situation arises, what do you do? The answer has to do with your unique style of dealing with conflict, your trust in the health care system, and the degree of inadequate treatment. Remember: you are your child’s voice. Any child, and especially an ill child, depends on his or her parent(s) or caregiver to be proactive advocates for their needs. Does this mean being pushy? Hopefully not, but sometimes it does.
A good place to start when considering how to advocate for your child is to talk with your hospital’s child life or social work staff about your concerns. They are there to help and have a wealth of resources at their fingertips. They can offer helpful advice on how to navigate the system as well as support the developmental, social, and emotional needs of your child.
According to DirectionService.org, a special needs advocacy organization, you can improve your advocacy skills in seven ways. I’ve added my own suggestions and explanations to their tips below, and hope these will help you in your role as advocate for your child.
1. Taking care of yourself
Prepare to be an advocate by building up your own personal reserves. Do whatever possible to take care of yourself, even when this seems next to impossible. Get enough rest, exercise and make healthy choices when it comes to diet, even if it’s hospital cafeteria food. Make sure you have enough help and support for yourself, and have people you can talk to when the going gets rough.
2. Learning about your child’s special needs
Luckily, the Internet gives you some control in understanding your child’s medical issues, possible treatments or therapies, so do your homework. Being informed helps you understand what you don’t know and allows you to ask your child’s doctor the right questions. It will give you confidence in the decisions you are making for your child.
3. Learning about systems and laws that support families
Children with medical challenges are entitled to many educational rights. Become informed of the available options by asking your hospital if it has a returning to school program. If so, this program can help you advocate for the services your child needs at school. If not, make an appointment at your child’s school and do some research before you go so that you can ask the proper questions.
4. Preparing, organizing and planning for meetings
We have a blog article on just this topic, “Getting the Most Out of Your Doctor’s Appointment”. We encourage you to take a look.
5. Building your communication skills
It can sometimes be difficult to ask your child’s health care providers questions, and especially challenging to speak up when you disagree with one of them. Since you know your child best, you are his or her best advocate. If you feel you are having trouble communicating with your child’s health care team or really anyone in your life, why not pick up a book on communication and read it while you are spending long hours bedside or in the waiting room? We also have some helpful ideas on our blog.
6. Understanding yourself and others by getting perspective
Sometimes when we are so deep in the trenches we can’t even think straight. Stepping back from a situation long enough can help you be more objective. Try reaching out to someone you trust for their opinion or advice—they may show you a side of the situation you would not have otherwise seen.
7. Contributing to creative problem solving
Thinking outside the box is often required in a challenging situation. Nothing seems “normal” anymore for a family adjusting to a major health issue. Consider choices you might not have made otherwise and try things a new way. You might just find a solution you weren’t aware of at first. Families can be set in their routines, but if there was ever a time to change it up, this is it!