There are many terms we have heard to describe our daughter. Some may say she is medically fragile, some say she has special needs, some say disabled. We say she is Casey (or Princess Casey).
We know when we leave our house that we will draw attention. Casey is a beautiful little girl and some people notice her simply for that reason. However, she is also very loud. She has a suction machine that we have to use frequently to help her breath and she also has stridor, which is noisy breathing.
In addition to the noises we bring into a room, we usually travel with an entourage of care providers, a wheelchair, and all kind of other things to draw attention our way.
It used to be hard for us to go out. We were not comfortable with the stares and questions or comments. We realized that when people are staring it is not with malice, but curiosity. Most of the questions and comments are said with good intentions. There are a few exceptions of course, and those hurt, but most people are very welcoming to all of us and happy to meet Casey and hear her story.
We do notice that some people may want to talk to us but are worried that they may say something to offend us so instead, they sit back (and often they end up just staring).
First thing first, we are parents just like you. We are proud of our children. We want to protect them and give them as many wonderful life experiences as possible. This is true for all parents, regardless of our child’s abilities.
Some of us may need to modify experiences for them to be safe or accessible for our children, and some of us may have to miss out on a few, but we want to see our children happy—just like any other parent. Our kids are just like other children. They like cartoons, music, tickles, and books. When they are upset, they want their parent to comfort them. Our kids…are kids.
Don’t assume you know ANYTHING about my child. My daughter may sound like she is snoring from the stridor, but that does not mean she is sick. I wish I had a dollar for every time someone looked at her and asked, “Does she have a cold?”
Break the ice the same as you would with any other parent. Introduce yourself, ask my child’s name, or comment that your child looks to be the same age. Don’t dive in with everything that is different about us. Start out focusing on our similarities.
After you break the ice, let us decide if we want to share more about our child’s condition. You may be right in guessing the diagnosis, but the child is so much more than their condition. Notice the child for being a child.
NEVER ask what is “wrong” with a child. Our kids are not broken, they are just different.
When you see someone using equipment that you have not seen before, chances are we expect the questions. Unless we are having a really bad day, or are in a rush, we would much rather you ask a question than sit and stare at us. Just be sure to ask the question in a respectful manner.
If the device is gross (some of them can be) don’t act disgusted. We know it’s gross; we don’t like doing it either. Bottom line is, whatever it is, it must be done. Your being grossed out about it is not going to help anything. If you are sickened by something, look away.
The best way to reach out to a family of a child with a disability is to treat them the same as you would anyone else. See the kids as kids, not as a diagnosis. Questions are okay. We know our kids look, sound, act differently. We expect questions and many of us are happy to share our children’s stories. A respectful question is always better than staring.
Check out the Navigating Daily Life section for information on parenting children with disabilities.
During the COVID-19 pandemic, we asked parents of children with disabilities and special health care needs to share their tips and stories about caring for their children during difficult times.