Don’t be afraid to ask questions. A lot of times the doctor will say a medical term, just because they are so used it and you might not understand. Before you go to an appointment, just try to bring some questions that you might want to ask. Write things down on paper because it is overwhelming. You get to the hospital; you have your doctors; you have your nurses. So many different people that you’re seeing and you definitely get overwhelmed a lot of the time. I always tell parents make sure you eat a good meal before you go sit at any appointment or anything you don’t know how long you might be there. A lot of times you just get frustrated, you get weak, you get aggravated, you get tired…
Go in ready, with an open heart and mind
Sometimes I might be resistant to coming into the hospital for Darius’ treatments. As parents, we’re going through it too. Sometimes you just have to prepare yourself like you’re going into take a test. You have to go in ready. You have to make sure you have your pen and your book and everything that you need for the test. That’s how it is when you’re going into these situations. You have to really try to be prepared as much as you can. And just go in there with the right attitude. Go in there with an open heart and an open mind. Always think positive. I think what really, really helps is just say, “You know what? Let him go to this appointment.”
The center of the wheel
Ask around and research for the best primary care physician you can find. That person is the center of the wheel and should be able to refer your child to the best specialists for each of their special needs.
If you have any questions, call them. Don’t feel you are going to be a pain in the neck. It is going to be worse off if you don’t get the information that you need. Even if it is, “Should we bring slippers to the hospital if he has an overnight surgery?” They could be the silliest questions, but you just have to. You have to get the most information you can get. With the first operation, we were clueless what to expect. Is he going to need a hospital bed? Can he be taken out of the wheelchair up the stairs? We had no clue. Finally, we had a week to write down any question that I had thought of and my husband did the same. We compiled the questions. We just e-mailed our doctor. Every question was answered to us via e-mail. We just e-mailed them and it worked. It eased us so we could feel more ready.
Trust your instincts
The most important thing is to trust your instincts. If you do not agree with something that a doctor or a therapist is saying, you need to voice it because they are not always right. We know our children better than anyone because we’ve spent the most time with them. We value them more than anybody else does. We really need to stand tall and stick up for them and stick up for what we believe is true.
Every mother knows her child
All I can say is if you don’t feel you’re getting the answers that you want, don’t take those answers. Keep on prodding, keep on poking, and ask questions. Always look for something new and different. If you hear somebody talking about something and you’re sitting in a waiting room, research it–and then bring it up to the doctor. I’m just an advocate for trying to make things better than what they are; a better life for him, anyways. But never stop asking questions, never. Go by your gut instinct. Every mother knows her child.
There is new stuff coming out all the time. I keep on researching stuff. Anytime I hear about something different, I go online and research and I’ll always question the doctor about it to see if it would help him. Don’t stop looking is all I can say. Keep your ears always open because there is another child that has something like your child and something that doesn’t work for them might work for you whether it be a different type of a pump, whether it be a brace, a teaching, a therapy anything.
Be a great advocate for your child
Be your child’s advocate. Don’t be afraid to ask any questions. The people who are sitting in front of you aren’t better than you. They just specialize in a certain area, and the reason why they do that is so that they can help with your child, so don’t feel intimidated when you go into the hospital. You’re seeking their help, and they’re going to give it to you, so if you don’t ask any questions and you don’t tell them any of your concerns, then you’re never going to get your answers. Always think of your child and what your child would want. Sometimes you may get to the point where you have to think what is best for your child, and not what is best for you. So just be honest with them, and be a great advocate for your child by getting whatever that child needs or whatever you can do.
Be more open. Don’t be scared to ask questions. A lot of parents tend to get timid about it, but dealing with Kayla, you have to ask questions and you have to be more vocal to represent your own daughter. You just go to different people who have been through it for a while, so you can ask those questions what they’ve been through, and they can give you hints and tips how to deal with it.
Everything is a learning process
Be understanding and accepting of what the doctors may tell you, but at the same time, don’t give in on your child. Today’s medicine and technology are constantly changing. I think that it can really accomplish things over time that doctors might not ever have thought was possible because everything is always changing. And everything is a learning process, not only for them in the medical field, but for the patient.
Be honest, be direct, and ask questions. Ask for a second opinion, ask for a third opinion. If you’re not happy with the way a clinician is relating to you or to your child, especially if you have an older child, or is not relating in what you feel is a respectful or helpful way, then speak up at that point because that is your right.
I would advise against going in blind. I think it would also be important to do research on whatever issue. There is so much information out there, and if you have access to a computer, go online and read up. Of course there are also support groups and people you can reach out to, and there are organizations for every possible disability or disorder you can connect with.
A notebook for appointments
I would get a notebook, and I would write down your questions and then bring it with you on your appointments. It’s for the parent to keep at home, because I think you have so many questions, sometimes you forget them if you don’t write them down. You can get worried or nervous. That makes it more difficult to focus and remember, in my experience. Plus, if you’re there with your child, you’re trying to work with them, distract them or whatever, and that can make it difficult to remember what you wanted to ask. There were also times when I would excuse myself and talk to them in the hallway without Ryan when I thought it appropriate.