When you hear the word “advocate,” you might think of or a protester crusading for their cause on the picket line. Having a medically fragile child isn’t too far off from championing for an issue on the ballot. Just as a protester is showing support for something they care about, when you have a medically fragile child, you have to learn to become an advocate for them. To advocate for someone means to support and represent them. When your child has special needs, you will find yourself being an advocate everywhere you go, particularly in medical settings.
Your child may see many different healthcare professionals who all have a variety of opinions about what is best for your child. So who do you listen to? How do you decide what is best for your child? For the majority of parents of medically fragile children, they had no medical training before giving birth; they were simply put in this situation due to fate. It can be overwhelming to be thrown into this radically different world. Fortunately, with an advocate mindset, you can make decisions for your child based on what is best for them. Here are some tips for mastering advocacy on behalf of your medically fragile child.
Knowledge is Power
One of the most important things you can do for your child is to educate yourself on their condition. Fortunately, this is the best time in history to have a child with complex needs, in part because we have one giant advantage over parents of yesterday: the internet. You are not the first person to walk this path, and because you can go online, you can connect with these individuals through chat rooms, blogs, and other websites. Not having a medical degree doesn’t have to prevent you from understanding your child’s condition; there is an abundance of information out there that explains in layman’s terms what is going on with your child. This will help you figure out how this condition will impact your child and what to look for in terms of symptoms and treatment.
Keep a Log
Knowledge is power not only for you, but for your child’s doctor. The more data you can provide them with, the more educated their suggestions can be for care. You can keep your own document for this or you can use an app. Some popular options for tracking chronic pain include the WebMD Pain Coach, Symple, and My Pain Diary. This data can make a huge difference in the level of care your child receives.
Remember Who’s Boss
You might be used to deferring to medical professionals. After all, they have degrees that say that they know better than you. But there is one thing that no doctor knows better than you: your child. While it’s essential to consult with experts in order for your child to receive the best care possible, at the end of the day, you are the parent and you have the ultimate say. If you don’t feel comfortable with a certain treatment your child’s doctor is pushing, you don’t have to go down that path. They are working for you. In that same vein, if you have a personality conflict with anyone involved in your child’s care, you don’t have to keep them around. It’s stressful enough to be managing a medically fragile child’s care; you don’t need someone who causes you or anyone in your family stress. While change is hard, it’s more important to have people on your team who genuinely care about your child and want what’s best for them.
Fully Understand Any Treatment First
Don’t blindly accept whatever your child’s doctor suggests as treatment without being fully educated on what it means for your child. This means having the doctor explain everything about the treatment first. Here are some questions you should make sure to ask before consenting to any one treatment:
- Why is the treatment necessary?
- How will it help?
- What are other treatment options available?
- What side effects can we expect?
- What are the advantages and disadvantages of this treatment method?
Talk to Your Child
While your child can’t tell you which treatment will work best for them, it’s important to keep their feelings and thoughts as part of the conversation. Ultimately, you are the adult, and you know what is best because you have the years of experience and full comprehension of their medical condition. But what you don’t know is what your child is thinking or feeling at any given time. This information is important not only for formulating treatment plans, but for your child’s success in treatment as well. Feeling fully heard and understood will go a long way towards your child feeling as positively as possible about their medical experience. Encourage your child to talk about their concerns with treatment, and make sure that all the relevant healthcare professionals know how they are feeling. It might help to sit down and explain exactly how treatment will work by using a doll to demonstrate. Try not to overwhelm them with too much information, but make sure to answer their questions in an age-appropriate way. If you don’t know the answer, seek accurate information as soon as possible.
At Evergreen Home Healthcare, we are diligent about only hiring in-home health aides who are compassionate, knowledgeable, and empathetic. If you need pediatric home healthcare in Denver, you can trust us to provide you with the RNs, LPNs, CNAs, occupational therapists, and other medical professionals your child needs. Contact us today to learn more!