My friend, who has been having some pregnancy struggles, just sent me a message and said she had a DIYforDean success because she advocated for herself with her doctors after a conversation we had. It is easy to forget how important it is to ask questions, make people clarify, and generally make sure you really understand what healthcare professionals are telling you about your health. This is even more important when you are doing it as a parent.
Let me tell you a little story. When we realized that Dean’s two large toes were part of a larger issue, we started to see a lot of specialists. We learned that his toes were caused by unspecified overgrowth syndrome which we now call Isolated Hemihyperplasia. The biggest concern with his condition is that the overgrowth also can cause overgrowth of cancerous cells. As a result, Dean gets ultrasounds and blood work every three months to make sure he has no growths in his abdomen.
Every appointment was filled with so much information it was hard to keep it all straight. I remember vividly waiting to meet his oncologist (a doctor’s office you never want to wait in) and being so nervous. The doctor entered, shook our hands, and proceeded to use so many medical terms, he might as well have been speaking a foreign language. It was like a caricature of the smart doctor and the two stunned parents just nodding blankly, and before we knew it, he was gone. We were so taken aback, we didn’t know what to ask.
Luckily, there was a genetic counselor there to break everything down for us; she helped us get the information we needed. She explained to us the types of questions we should ask and the information we need to know. But there isn’t always someone there to do that, so you have to learn how to do this on your own.
It was then that I realized we had to become our son’s advocates. We had to be proactive, come with notes, ask questions, and make sure we actually understood the answers. I started recording our appointments on my phone to make sure we could go back and listen later if we didn’t quite understand something. We also started notes on our phones with questions and answers to those questions. I became a master of his online chart and appointments. If they wanted to schedule appointments that didn’t work for us, I asked them to change it. When they told me they didn’t have a genetics appointment available for three months, I called every day until I got something better. #Annoyingmom
You have to be persistent, vigilant, but also patient. You have to do whatever it takes to get your kids the care they need. I tend to be a people pleaser, I don’t like confrontation, and I don’t like being pushy. But when I really realized that Dean was going to need long-term health care, all of that went out the window. I don’t mean go into crazy mom mode, but if you don’t ask, and then sometimes demand what you need, you aren’t going to get it.
This applies to so many aspects of our lives. As women, we often don’t want to ruffle feathers. We don’t want to be too outspoken. We want to be amenable. We want to be liked. But I have realized I can still be all those things and ask for what I want. All people can do is say “no” and then I have something to work with.
I have started asking for what I want, and sometimes telling people what I need, instead of saying, “Excuse me, could I bother you for just one sec. I just have a quick question. If you are too busy, no problem. I can come back.” I am done with that. Instead, it is, “Here is what I need–can you help me with this?” If the answer is “No,” then, “Tell me who can.”
We are Do It Yourself parents, and it is our job to advocate for our kids. I hope I can help you learn to do that, and I hope I have lit a little fire under your behind. Don’t be embarrassed or scared. Ask the hard questions, make sure you understand the answers and get the care that you and your family deserve.