Advocating for a medically complex child means speaking up and communicating their needs—medical, educational, and emotional—to doctors, teachers, law makers, and even other family members. It is a full-time job in and of itself, and a very important one, as you well know. After all, you are your child’s spokesperson, first line of defense, and safety net.
There are many facets to being an advocate, and naturally, everyone’s version of advocacy is a little bit different based on individual needs. That said, we’ve compiled a list of general tips to keep in mind as you begin or continue your journey into advocacy. As always, we’d love to hear from you if you have additional insight earned from your own experience that you feel could benefit other caregivers.
Tips on Being an Advocate for Your Medically Complex Child
- Do the research, and continue to do the research because breakthroughs are occurring all the time. There is no more powerful weapon than knowledge— and thanks to the internet, you can arm yourself with it. Just be sure to cross reference what you learn with medical journals, books, and the child’s physician. Learn the lingo of your child’s condition, illness, or disability. Medical-ese really is its own language, and you’ll be in a much better position if you and your physicians can understand each other.
- Don’t be afraid to ask questions. Just because you’ve done your absolute best to become an expert doesn’t mean you’re going to know it all—it’s just not possible—and there is zero shame in asking doctors, teachers, etc. to explain or clarify. Likewise, it is completely acceptable to ask for a second opinion or ask follow-up questions until you’re sure of what’s to come.
- Write things down, save information, and get organized. Always keep a list of medications and dosages on hand, as well as contact information for important physicians and emergency contacts. You might also want to keep things like insurance papers readily available. If the child’s condition is rare, ask your Specialist for a letter that describes its seriousness.
- Talk to the child about their feelings, preferences, and opinions. Studies show that kids thrive if they’re having positive communication with their parents or caregivers. To some, this may seem obvious, but it’s entirely possible to get so caught up in protecting, advocating, and keeping track of the never-ending list of medical care that you forget to check in. All that medical care can be overwhelming for kids too, so even giving them a simple choice can help. For example, “Which should we do first? An ostomy wafer change or G-tube cleaning?” Small concessions like this can give your child a sense of comfort and control.
- Trust your gut. In many ways, you are already an expert, an expert on your child! There are times when you’ll need to follow your own instincts. That's just the simple truth of the matter. Don’t let anyone discredit you for sometimes knowing when you know.
- Take care of yourself too. There are no words to describe the seriousness of the stakes of your job. To keep up your strength and stamina, you have to make time for self-care, even if it’s only 5-10 minutes a day to focus on you. Take a brisk walk, practice meditating, make a cup of tea, or check in with your support system. You’ll be in the best position to offer support after you feel supported yourself.
If you want to read more about line care, securement devices, advocacy, and self-care for caregivers, feel free to explore the rest of our site or follow us on social media! We aim to be a resource, community, and meeting place for you to connect and engage with each other. If you ever have any questions, send us a message and we’ll be in touch.