I recently wrote an article about 15 things you should never say to a special needs parent. While writing it, I had a hard time focusing on things not to say, and kept wanting to suggest alternative options, which is how this article came about.
As I worked on these ideas, I learned there is a time, a place and a relationship where many of the following comments and questions are welcome and completely acceptable. And alternatively there is a time, place and relationship (or lack thereof) where they are not.
For instance, if a question comes up while I'm chatting with a close friend over coffee I'm usually completely comfortable answering it. Alternatively, if a stranger asks the same question while I'm trying fifteen pairs of shoes on my son hoping to find one that fits over his brace, I might not be as forthcoming.
So please remember that with all of the following questions and comments, they may be fine in some situations but offensive in others.
The other thing to consider is the presence of my child. Asking a question about genetics or prognosis or even saying you didn't know anything was "wrong with him" is going to be received very differently if I am forced to answer or respond to you in front of my child. That doesn't mean you can't ask me a question or make a comment in front of my child, just that you should, as always, be aware and think before you do so.
My intent is not at all to suggest that you shouldn’t ask questions or talk to a parent of a child who has special needs. As always, you should just be thoughtful in the words you use. The headers are the things not to say, followed by the alternatives.
1) What not to say: “She looks so normal” or “I didn’t know anything was wrong with him.”
Alternative: I suspect most people making this statement are trying to let the parents know that the child seems to be doing very well. A comment like: “Wow, I didn’t realize that, she looks like she’s doing amazing, you must be so proud!” might go over better. Or even something as simple as “I didn’t know he had those difficulties, he looks great.”
2) What not to say: “He looks fine to me” or “You would never know to look at her.”
Alternative: Choose words like: “You guys must have worked really hard because he looks like he’s doing awesome!” might be preferable to many parents. Or a simple response like: “Wow, I didn’t know that” is probably going to be a better choice.
3) What not to say: “Is it genetic?”
Alternative: If we’re having a heart to heart about my child’s difficulties, I’m not going to be insulted if you ask me in a tone of voice that shows respect: “Do they know what caused his challenges?” or even if you come right out and ask “is it genetic?” However, if you see a child with a disability, point at them in the Wal-Mart checkout line and ask “So, is it genetic?” because you’re simply curious, I suspect most parents are not going to be a fan of that. However, I will answer you, I will educate you and I will probably encourage you to choose your words more wisely in the future.
4) What not to say: “He's going to grow out of it, right?”
Alternative: Just to reiterate, children don’t grow out of permanent disabilities or medical conditions. Most parents have had to let go of the denial and accept this fact. That doesn’t mean it’s not hard and doesn’t make us sad. Now we have to help you, a family member, friend or just a random grandmother of a child in my kiddos preschool class that I just met, also come to terms with this fact. A fact that we may still be grappling with ourselves. I might suggest comments such as: “How’s he doing now?” or “What’s he working on in therapy lately?” or “What new skills has he learned lately?” Give us an opening and we are likely to brag up a storm.
5) What not to say: “Did you cause her to be in a wheelchair?"
Alternative: This one just baffles me on its level of rudeness. And no, I didn't make it up, it was asked of a real actual friend of mine. I’m not sure I have a good alternative, but something like: “How come your daughter uses a wheelchair?” is preferred. And like so many other questions and comments, there’s a time and a place for it. I’m going to be much more open and willing to answer you if we’re sitting together at a birthday party while our kids play than I am if you’re a stranger and you spring this on me in Starbucks, especially if I haven’t had my Chai Tea Latte yet!
6) What not to say: "My uncle's brother's nephew's cousin has autism, so I know what it's like" or "My nephew’s cousin has autism too. He's really good at math. What's your son gifted in?"
Alternative: People want to connect with other people and they often try to do this through shared experiences. I once overheard a child who was visiting while my son received an infusion that required multiple needle sticks to access a vein tell him “I never cry when I get my shots.” I have to admit I was a little miffed by this comment, after I had just spent a half an hour jabbing him with needles and digging around trying to get a vein. After some space I realized that this child wasn't being a jerk, they were just trying to share in the experience as best they could. They didn’t have the frame of reference that my son is far too familiar with. So I try to remember this when I hear adults making statements like the ones above. My recommendation here is a comment like: “I know another child who has autism, he’s really into trains, what’s your son into?” or “My friend’s son has CP, he wears a brace on both legs, why does your daughter only wear a brace on one?”
7) What not to say: “Why didn't you stop having kids after the first one?”
Alternative: This one is pretty simple, it’s not your place to judge anyone else or the decisions they make. Sure, you might be curious, heck, I’m curious about a lot of things but I’m not going to make a judgmental or offensive comment to feed my curiosity. So, I would suggest making a comment such as: “I didn’t realize you had 10 kids! I bet they keep you busy.”
8) “God only gives you what you can handle.”
Alternative: I would be fine with: “It sounds like you have a very full plate. I’ll keep you and your family in my prayers”. But I think a better option from a friend or family member would be: “Do you need any help, I’m around if you do.” Or how about “I bet we ran into each other today for a reason, I’m free on Saturday, can I please come and babysit? I’d love to hang out with your kiddos.”
9) What not to say: "Have you tried juicing?" or “Why don't you watch this movie about the kito diet?”
Alternative: I’m not against hearing about natural remedies, just be cautious not to phrase it like your suggestion will cure my child and I will probably be pretty receptive. Maybe a good alternative here would be “Have you seen the research they’ve been doing on medical marijuana with children who have epilepsy, it looks really interesting,” or “You were saying that your son tires out really easily, I’ve had more energy since I started juicing, maybe it would help your son too.” Note the difference between this and "Juicing cured my gout, maybe it will cure your son's cerebral palsy too."
10) What not to say: Comments on work, such as: "It must be nice coming late" after running around all morning at appointments or “It must be nice getting to relax all day since you don’t have a job.”
Alternative: The above comments can come off as very judgmental. Better options include: “Sounds like you had a busy morning of appointments with your little one, I hope everything went well” or “With everything you do with your son everyday, it’s like a full-time job!”
11) What not to say: “He's one of Gods special angels.”
Alternative: The above statement may be heard as quite condescending when it's reserved only for children who have special needs. A better option might be: “What a cute kiddo, he’s got a great smile.”
12) What not to say: "How in the world did you break both your legs?"
Alternative: Now that we know from the what not to say article that an AFO is not a cast and that these children most likely do not have broken legs, you might go with something like: “I love your son's camo brace, that’s super cool” or how about “Your daughter's pink shirt is so cute” or “Those are pretty cool looking sneakers your son is sporting.” (it is absolutely possible to see a child with a disability and choose to comment on something that is not related to the disability).
13) What not to say: “I don't know how you do it. You are a great mom” or "Do you really start his IVs, oh dear, I just couldn't possibly do that!"
Alternative: “You are such a great mom, your kids are so polite!” or “You are so active with your kids, good for you.” Or how about “You must be so proud of him, he’s a great kid.” Mom’s take care of kids, that’s sort of the mom thing, right? For me it feels awkward if you compliment me for taking care of my child's basic needs. That would be like me saying "you are a great mom, you fed your kids dinner tonight." Kind of weird right?
14) What not to say: “I can’t believe you give him (insert medicine or medical procedure here) I would never give that to my child.”
Alternative: Once again, judgmental comments should be avoided. Try something like: “That sounds like it was a tough decision, how are you holding up?”
15) What not to say: “I nearly had a stroke” or “I think I’m going to have an epileptic fit” or “are you retarded?”
Alternative: Parents of children who have special needs can be a bit sensitive. Most of us understand that you didn’t mean to be offensive, but we still might be offended nevertheless. I will always be offended by the “R” word. It’s just not OK to use it if you are referring to something you think is stupid or awful, or that you just don’t like, maybe go with “that’s so stupid” or “that’s really awful” or “I hate that!” Easy right? Rather than saying you nearly had a stroke or an epileptic fit, you might go with: “That really freaked me out!” or “Wow, that really startled me.” It’s not hard to change your choice of wording, it just takes a moment to stop and think.
16) Always use person-first language.
Many of us have become very aware of people-first language. Try to choose phrases like “a child who has autism” rather than an “autistic child,” a “child with a disability” versus the “disabled child.” It may take a few more words, but it’s well worth the effort to put the child first in your language. Making an effort to put the child first in our language helps us to remember that these little people are human beings, children, sons, daughters, students, friends, sisters, brothers, athletes, dancers or singers. And that their disability is only a small part of what makes them who they are.
17) Remember we're humans too. Compliment us without a reference to our child's challenges.
Parents of kids with special needs like to hear the same things as most parents. “What a cute dress your daughter’s wearing” or “I love your sons new haircut” or “what lovely manners your little ones have,” or “you must be so proud of your daughter” or “your son has a lovely singing voice”. Note the absence of a reference to the child’s challenges. Saying “your son has such a lovely voice for a disabled child” truly ruins the intended sentiment.
At the end of the day we’re all people. We all say things we wish we could take back from time to time. We all unintentionally insult or hurt people we care about with thoughtless words and sometimes we don’t even realize it. And we all react differently to things that are said to us. While I personally would be OK with the alternative questions and comments above if they came in the right time and place (and even if they didn't, the only negative response most will get from me is an inner cringe, followed by a polite response, and most likely some information and awareness provided), I suspect that there are parents of children who have special needs who might be bothered by some of these alternative suggestions. However, I think most would agree, they are better than the original statements!