It does not matter if you are talking with your child’s teacher, their brain surgeon, home health aide, or physical therapists, it is important that you are able to talk with everyone on your child’s care team openly and honestly. You need to be able to express you concerns, needs, goals and ideas as well as to hear theirs—really hear them, not just nod and tune out.
Why is communication with the care team so important? That’s simple - everyone on this team, including you, should have the same priorities: your child’s health; safety; and happiness.
You are the captain of your child’s care team. It is up to you to set the tone, build the team, and keep everyone focused. If there is someone on the team that you can’t talk to and can’t work with, that’s a huge problem. You cannot just hope that person goes away and avoid interactions until they do. No, you must deal with it.
You must either try to find a way that you can talk to them and work together, reach out to their peers or boss, expressing your frustrations, or you must replace them.
I discovered a few tips over the years that helped a lot. First is to put personalities aside. Your child’s care team is not there to be your friend; they are there for your child. If your personalities clash, get over it. They may have a personality that you typically cannot stand, but if they are good at what they do and work well with your child, you must put your differences away.
Remember, it’s not personal. I used to worry about hurting someone’s feelings if I told them not to do something that was bothering or harming my child. Luckily, I got over that concern early and realized it does not matter if someone’s feelings are hurt if that means my child is better.
I had to put my feelings aside as well. If I was doing something that was making their job harder and they asked me to change something, it wasn’t because they were being mean to me, they were simply trying to help my child.
Respect is HUGE! Always treat everyone with respect. Do not assume you are better or smarter than someone. Unless they give you a reason, treat them the way you would want to be treated if you were in their shoes.
Be honest, and open. If the doctor asks if your child has been in the stander every day since your last visit, tell them the truth. Don’t tell them what you think they want to hear. They need the whole picture and the actual picture, to be able to provide your child with the best care. They know you are human and sometimes life just gets in the way.
Everyone makes mistakes, even you. If you make a mistake, don’t hide it. Instead, tell someone, fix it, learn from it. If you set this type of example, you can more likely expect others to follow. There will be mistakes made, and being able to admit these, learn from them and move forward is healthy. However, if the same mistake is made repeatedly, and the person making it is obviously not learning from it, then you may have to replace that team member or make some changes.
You may have to go through a handful of people before finding the right night nurse, pulmonologist, PT, etc. That’s okay. Not everyone is going to be a good fit. Build the care team that is best for your child. Then lead by example of honesty, respect, and teamwork and they will follow. The golden rule is still a great one to follow: ‘do unto others as you would have them do unto you.’
When it comes to your child and their medical needs, there is no such thing as a dumb question. Here’s how I think about asking questions in medical settings as a parent of a child with a disability and a nurse.
Categories: Diagnosis & Health Care