Children with special needs and their families are a major portion of the community. According to the US Census Bureau, as of 2010 more than 5 percent of the 53.9 million school-aged children in the country reportedly had a disability, and this doesn’t include unreported disabilities and other special needs that may not officially be considered disabilities by the government. This means that even if you don’t parent a disabled child yourself, we all need to know how to talk about disabilities in children.
Here are a list of things you should never say to the parent of a disabled or special needs child, and things you should consider saying instead.
Never say any of these things:
“I’m sorry.”
Don’t be. We’re not! Having a special needs or disabled child isn’t a tragedy, a burden, or something to be regretted. I won’t apologize to you for being burdened with your children even though they can be expensive, time-consuming, and even emotionally draining, so please show me the same respect.
Parents with special needs and disabled kids know this comment is probably coming from the right place, but it puts them in a bad position; to make the person who said it feel respected they have to disrespect their own child.
Instead, say this: Just make conversation as if we were parents with kids or everyday people, because we are. If you have kids too, ask for a playdate. If you don’t have kids, ask about the child’s hobbies, interests, or studies.
“Parenting must be so hard for you. I don’t know how you do it. I couldn’t do what you do. You’re a superwoman / superman / superparent / superhuman.”
Parenting in general is hard. None of us really knew what we were in for, but we chose to do it anyway. We all do it the same way: one day at a time, trying to learn from the mistakes we make.
Back when you were a single person starting college, did you know anything about little league? Pokemon Go? Building a soapbox racer, or whatever else your kids are into? No one did, but they get born, and develop interests and needs of their own, and you adapt. That’s what parents do. They’re not always interests you share, or needs you’d hope to have to meet. Sometimes you have to learn to meet medical needs or emotional needs you didn’t anticipate, but as a parent, you learn to do it.
If you tell someone they’re a superparent for simply caring for their child, it implies that the child must be a terrible burden, and that’s not something anyone wants to hear. It also doesn’t really say as much about their parenting as you think it does.
Instead say this: You’re a great parent because you are so consistent; you always do what you say you will. Or, you really come through for you kids, I admire that. Or, you are great about expanding your kids’ palates, they are wonderful eaters. Nice work! Tell me about actual parenting victories.
“I’m sorry you had to put your life on hold / Don’t forget to take care of yourself.”
First of all, my life isn’t on hold. This is my life, I’m living it right now. Unfortunately, now I’m also spending some of it educating you. Parents of children who are disabled or have special needs still work, travel, see friends, pursue hobbies, and do the same things you do.
It’s true that respite care is sometimes hard to come by. However, suggesting that parents of special needs or disabled kids jet off to the spa doesn’t make you seem understanding; it feels offensive and out of touch.
Say this instead: If you are friends with a parent who might need some respite time, why not actually offer some help? If you have children you can offer to host a play date at your place while your parent friends have a date night. If you don’t have children, you can offer a meal, a day or evening of babysitting, a mowed lawn, or even a gift card now and again if you want to help out. You can even just say something like this: “Just remember, your friends, including me, are with you, so let us know what you need.”
“Is there a cure you can try?”
Most disabilities and special needs are part of the child’s neurological or genetic makeup. They aren’t a disease that is cured. Trust that caring parents are doing everything they can to help their kids and that this kind of comment is not helpful.
Say this instead: Nothing. Don’t pry into the details of treatments, therapies, and prognoses unless the parents bring them up.
“Ah, your child will grow out of it.”
No one grows out of autism, cerebral palsy, Down syndrome, hemophilia, PKU, paralysis, or any other disability. Everyone changes as they age, yes, but “getting better” or the idea of “recovery” being a goal for people with disabilities is wrong-headed. It also sets people with disabilities apart in a negative way.
Yes, special needs and disabled children (usually) grow into adults. Most of those adults learn, grow, and change and have a real shot at living a life they love—especially when people around them accept them as they are.
Say this instead: “They grow up so fast, don’t they? I feel like I blinked and my baby turned into a high schooler!” Because just like all kids, yes, they sure do!
“Wow, she really looks normal! / I couldn’t even tell something was wrong with him / You could never tell by looking at her / He seems fine to me / Does s/he really have a disability/special needs?”
There’s a lot going on with these kinds of statements, so let’s break them down.
First of all, there are many “invisible” disabilities in people of all ages, including children. Parents of special needs and disabled children do not owe you an explanation. Please, don’t ask for one.
Second, it is very rude and presumptuous to act as though there is some measurable standard for normal at all. It’s one thing to say something like, “She’s tall for her age,” because that refers to an actual metric that exists. “Normal” implies judgment and standards that are inherently biased.
Third, many people make comments like this because they believe it is a comforting thing to say. Please understand that to parents of special needs and disabled children, this kind of comment has just the opposite effect.
On the one hand, parents work hard with their challenged children so they can succeed in social situations, and it’s not easy. Don’t negate those efforts with a backhanded remark. In addition, if a parent tells you about a child’s diagnosis at all, he or she probably has a reason to do so. Replying this way negates that reason and ends the conversation.
Say this instead: Try offering a genuine compliment. For example, if the parent says, “Sara is autistic,” say, “Well, s/he has great manners,” or, “Sara, you seem to have a really fun sense of humor,” or, “Well, I have really enjoyed meeting you, Sara!”
“Your kid is melting down because you won’t discipline him / Why won’t you just make her stop?”
“Gee, thanks for that advice—if only I had thought of that,” said no parent of a disabled or special needs child, ever.
Children without disabilities and special needs typically throw temper tantrums to achieve specific goals: they want something they were refused, they want attention, or for some other, particular reason. Kids with special needs and some disabilities sometimes “melt down” because they experience an inability to communicate, extreme sensory overload, and other problems that are qualitatively different than typical temper tantrums. Furthermore, these children simply have fewer emotional coping resources to manage these episodes—and not for lack of training or trying.
Say this instead: Skip the blame game and be an ordinary super hero, because that’s how good it can feel when, for example, in a restaurant or airplane full of hostile people a single person offers a smile and a kind word to a parent of a child with special needs or disabilities. “You’ve got this, mom,” or, “You’re a great parent, I can tell.”
“Are you retarded? / I thought he was going to stroke out / She can’t make up her mind, she’s totally bipolar/schizophrenic / Are you deaf or just dumb?! / That guy is some kind of psycho / I felt paralyzed / He cut our budget so much, we’re totally crippled / That is a lame idea / What a spaz! / She cut me off, she must be blind!”
And all of the rest of them. If you want to insult someone in our culture, just use a metaphor for a disability—but please, don’t. Many of us just don’t think before we use these phrases and don’t mean anything negative when we say them, but the fact is that as adults we should think before we speak. It’s time to know what these words mean, especially to parents of special needs and disabled children.
Say this instead: Anything else. Just avoid ableist language and think about how what you’re saying might mean something very specific and hurtful to someone else. Also, ask yourself what the origin of phrases you use is, and if you don’t know, find out.
“What’s wrong with her?”
Nothing. And by the way, why would you ask me to discuss intensely personal medical information about my child’s well-being right in front of her?
Say this instead: Focus on the positive things just like you would with any kid—after all, would you tell a parent how ugly their child was, even if you thought so? I hope not. Say, “What a friendly smile!” or “I love your outfit!”
“Your kid seems low-functioning / Can’t see add big numbers really fast or something? / Is he an idiot savant?”
Avoid labels like low- and high-functioning when you talk to parents about their children. In fact, avoid labels when you talk to people about people. Would you ask a parent of an Asian child if they were very smart or studying karate, or the parent of an African-American child if they were excelling at basketball or wanted to be a rap star? Please say no unless you have a reason other than race to ask those questions. And “idiot savant” is, for obvious reasons, no longer a legitimate term to apply to anyone.
Say this instead: If it is appropriate, ask questions about the child’s likes and interests or comment on the child’s actions or behaviors in appropriate ways. “He seems to really enjoy tactile activities,” or “What does she like to do most?”
“Kids like that get abused so much, it must really scare you / How will you protect her when you’re old? Are you really scared for the future?”
First, realize that all parents worry about the future, their children, and their children in the future. They also know they can’t protect their children forever and that scares the heck out of them.
Second, don’t use the experience of seeing someone raising a disabled or special needs child as an excuse to dish about the latest horror story in the news about special needs or disabled adults who have been abused or mistreated. They have heard about it, and those stories keep them up at night. If you really care, help change the future with them by becoming involved as an advocate for disability rights and issues.
Say this instead: Nothing. You’re not the ten o’clock news anchor, no need to repeat that story whenever you see someone who is disabled or has special needs.
“Is it genetic? / Was there some kind of accident? / Did you cause him to need a wheelchair?”
I put these questions together because at base they are asking the same things: how did your child become disabled/special needs, and is it your fault? Neither of these questions are really anyone’s business, so if you have to ask, it’s not your place to do so. Parents of children with genetic disorders struggle with enough guilt; they don’t need more from you. This is also true for parents whose children experience accidents, regardless of whether or not they were involved.
Say this instead: Nothing.
“My friend’s kid has autism, I know what you’re going through.”
It’s a wonderful thing to want to empathize with someone, but truly, each child is unique, including those with disabilities and special needs. Do not negate the individuality of these children by implying that when you’ve met one, you’ve met them all.
Say this instead: If you are hoping to connect and get to know this person better, ask them politely about their schedule or routine. “We’re late risers over here because of my work schedule; what’s your morning look like?” or “Jane really needs structure, so we stick to a schedule most of the time. How about you?”
“Why did you have another kid after the first one was disabled/special needs?”
It’s pretty unbelievable that this is something people feel they should ask, but parents of children with special needs and disabilities do hear this with disturbing regularity. The answer is different for each family. In some cases they may have felt their children—each and every one of them—were a gift, and wanted to have more than one. In other cases there may have been chances, not certainties, of inheriting some traits. In still other cases they may not have planned to have more than one child.
The bottom line is that this is truly no one’s business.
Say this instead: Nothing.
“Life/God only gives us what we can handle.”
This is another statement that comes from the right place, but sets off many parents of special needs and disabled kids. First, it is essentially a platitude, not a very meaningful sentiment. Second, if you’re talking to a parent in this position, they may at times feel like they’re not handling it well at all; there are some very difficult days. The idea that you can and should be able to handle it all—as ordained by the almighty, no less—suggests that feeling any less capable is a failure, and that you shouldn’t discuss your need for help or vent about feeling overwhelmed. Finally, not everyone believes in God, or feels that things like disabilities happen “for a reason,” so saying things like this can be hurtful.
Say this instead: Lend a sympathetic ear and be a great listener. “How do you feel like things are going? Is there anything I can do to help?”
“Have you tried gluten-free / juicing / supplements / turmeric / garlic / Vitamin C / dye-free / casein-free / etc.? Oh, did you vaccinate her?”
For the love of anything that matters to you, please, stop asking people this, and I mean anyone with a serious medical issue. At a minimum, stop asking parents of disabled and special needs children. These comments are incredibly unhelpful and unbelievably patronizing. You simply do not know more than an entire team of highly trained medical specialists, and that’s who is treating my child.
Additionally, do you honestly believe I’m not competent to research and test therapies for my kid? Because I’ve been doing it since she was born, and I’m an expert. I’ll respect what you do in your family. Please, respect what I do, too.
Finally, just like the person who asks if I caused the accident that landed my child in a wheelchair, the person who knowingly asks if I vaccinated my child in response to hearing about a diagnosis is playing the blame game, pure and simple. Do not let this be you. Do not use the disabilities or special needs of children of others as a platform for your political beliefs, for any reason.
Say this instead: “I’m sure you have a lot of resources at your disposal, but I want to support you, so let me know if you need or want to access any other resources or need help researching new issues.”
“Wow, you give your child [medicine or procedure that seems extreme to commenter]? I can’t believe that, I would never give that to my child.”
Well, it’s a really good thing you don’t need to make this decision in real life, and that you can judge me for making it! Parents of disabled and special needs children know that many of their decisions are difficult. They’re the ones who have to make them. They also know that sometimes the options are all less than stellar.
For example, you may have to choose either dangerous, possibly life-threatening seizures for your child or heavy medications that affect cognitive efficiency. Fortunately, they make these decisions with the help of trained professionals and do the best they can for the children they love. Your opinions on the decisions don’t help anyone.
Say this instead: “That must have been a tough decision to make, but I’m sure you made the right call for your family,” or “I hope that’s working well for you.”
“He should know better by now / Isn’t she too big/old for that?”
For parents who need to push larger children in strollers or use highchairs for them, this is a common question. Remember, the parents know more than you do about what tools work best for managing their child’s behaviors and meeting their needs.
Say this instead: Nothing.
So, what else can you say to the parent of a child with special needs or disabilities? So many things.
“You are not alone.”
No one is in exactly the same position as any one parent, but there are plenty of parents out there sharing many of the same challenges. There are lots of allies, too—more every day.
“What can I do for you?”
Caretakers do sometimes need someone to offer them some care. If you are in a position to reach out and help someone who cares for a disabled or special needs child, ask what they might want or need from you in a respectful way.
“Nobody is perfect—but you’re pretty awesome!”
Let your friend who is parenting a child with special needs or disabilities know that you think they’re doing great. Don’t be phony; no one is a superhuman, and everyone has bad days and makes mistakes. But it feels good to get that vote of confidence, especially on one of those days.
“Play is therapeutic for everyone.”
Your friend whose child is disabled or has special needs has a busy life and a full schedule, with lots of therapy appointments and doctor visits. Sometimes your friend may worry that time that gets “frittered away” with play or just hanging around isn’t gaining anything for their child, but it really is. Play is great for all kids, including those with special needs and disabilities, and it’s great for adults, too.
“What’s new?”
Celebrating the little things is a big deal. Let your friend know that you want to hear about even the little details, because sometimes what seem like tiny accomplishments are really a very big deal for kids with special needs or disabilities. Share those milestones and if you’re not sure what they mean, find out.
“Try not to let parents of typical kids or strangers bring you down.”
It can really be hard to hear about all of the milestones your friends’ kids are hitting on Facebook or at the park when your child just isn’t there. With strangers who can be careless and even rude, it’s even harder. Let your friend know that you’re aware of this struggle, and be there for them if they need to talk about it. And if a random stranger says something awful that demands a response when you’re there, step up if it’s appropriate.
“How are you?”
Remember to relate to your friend as an adult, too! It’s tough, we all get sucked into the kid-dominant narrative. Let your friend know that you see them and care about how they’re doing. It goes a long way.
