I am a mother of an amazing little six year old girl, Casey. Some may say she is medically fragile, some say she has special needs, some say disabled, and the list goes on and on. 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. 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. However, over the years we have figured it out as best as we can and we can now enjoy going out with Casey. For the most we have found 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 find 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).
Most people are aware that the R-word is not acceptable, and some people have heard about and try to follow the People First Language. These are great tools to know what is going to offend someone for sure, but I hope with this article that I can make it even easier for you.
First thing first, we are parents just like you. We are proud of children. We want to protect our children 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 in order 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 kids. They like cartoons, music, tickles, books, etc. They would rather talk about ‘My Little Pony’ than politics. When they are upset they want their parent to comfort them. I think if you keep this in mind, it will make interacting with families of special needs children a little more natural.
Here are a few more tips and examples:
Don’t assume you know ANYTHING about a child. Just because my daughter sounds like she is snoring from the stridor does not mean she has a cold or is asleep. I wish I had a dollar for every time someone looked at her and asked “Does she have a cold?”
BAD:
- Does she have a cold?
- He has Down Syndrome. My sister’s friend’s cousin… has Down Syndrome too.
- Oh gosh, he is really throwing a fit, he must have autism, right?
GOOD:
- How old is she?
- I have a little boy that like’s trains too (if the child is holding a train or something).
- That’s such a pretty shirt, is pink your favorite color?
As you can see, the ‘GOOD’ examples are things you would say to ANY OTHER parent. After you break the ice and talk with a parent of a child with special needs let them decide if they want to share more about their 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 children are not broken, they are just different. This does not make them wrong and a healthy child right. We have had a few people watch us suction Casey then come up and ask what’s wrong with her to require this activity.
BAD:
- What’s wrong with him/her?
- Is he/she sick?
- Should I call someone for you?
- Do you have to do that here, can’t you step away? That’s so gross.
GOOD:
- I have never seen anything like that (referring to equipment- not the child), what is it?
- It looks like you are pretty good with that thing (again- referring to equipment), I bet it took a while to get used to.
When you see someone using equipment that you have not seen before, chances are they expect the questions. Unless they are having a really bad day, or are in a rush, they would much rather you ask a question than sit and stare are them. 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 any more than you want to see it. Bottom line is, whatever it is HAS to be done. The suction tools we use pull out some gross stuff. We try to keep those out of site, and covered, but there are times when we cannot avoid it. You being grossed out about it is not going to help anything. If you are grossed out by something, look away.
We are NOT heroes. We think our kids are, but we are parents. We are doing what anyone else in our shoes would do. It’s hard to put yourself in our shoes. We get that, but if you want to praise anyone, we would prefer you praise our kids.
BAD:
- Wow, how do you do all this?
- I don’t think I could do this at all.
GOOD:
- I’m impressed, you really juggle a lot.
- Your kid looks so happy; all that you do for him/her is totally paying off.
One last tip- it’s NOT a contest. Some of us have children with more severe conditions than others, but regardless of the extent we are all going through the same thing. When our child is diagnosed (or in search of a diagnosis) we end up going through the grief cycle. The time we spend on each stage or the number of times we cycle through may change depending on our child, but the general feelings are all the same. I’ve found that I have to explain this a lot to other families of children with special needs. Early on when I would hear other families devastated by their child walking late, or having a learning disability I would get very angry. I did not understand how they could act like that was such a huge deal when I would have done anything to have their problem. I learned over time though, that it’s not about the challenge itself; it’s about the fact that our child has to deal with any challenge. It’s all very subjective.
BAD:
- Oh that’s nothing, so what if your child has ADHD at least they walk.
- I was having such a bad day, but then I thought to myself at least I’m not you. (Yes, I really have heard this one.)
- How long will this last? Or how long does he/she have?
GOOD:
- It’s got to be hard to deal with anything like that. There are lots of organizations out there that can help get you in touch with other families that have or are going through the same thing.
- Is there anything I can do? Don’t ask this unless you intend to follow through. Things like cooking, cleaning, watching the kids, feeding the dog are all ways that people can help especially while a family may be dealing with a hospital stay, numerous appointments, etc.
Our kids don’t have expiration dates. Sometimes we are given prognosis on how long our child will be sick and/or live, but these are NEVER things to focus on. When we are expecting a child to be better in a certain time and they are not this type of question is like a thorn in the parent’s side. When a child is on borrowed time this type of comment can be a brutal reminder.
Really truly the best way to reach out to a family of a child with special needs is to treat them the same as you would anyone else. Recognize the parents are doing the best they can (and that if you had to do the same for your child you would). See the kids as kids, not as a condition or disease. Questions are okay. We know our kids look, sound, act different. We expect questions and many of us are happy to share our children’s stories. A respectful question is always better than staring.
This content was originally created for and published by Papas of Preemies.