The other week, I wrote a post for Parents.com about stuff not to say to parents of kids with special needs. One of the things I griped about: when people tell me "He looks so normal!" To me, that's rude. So I was totally taken aback by commenters who insisted that their kids are not normal. As one wrote, "Actually, the truth is, my child is different. She is not normal." Another felt the need to point out, "I think it is dishonest to say that most of these kids will lead normal lives, because generally it will not be the stereotypical 'normal' that you think of."
So let's talk about normal.
If you define "normal" as having a lack of disabilities, well, that is a seriously narrow-minded way of looking at the world. Really, there is no such thing as normal. Standard issue is only for parts that come off an assembly line. Every person out there has his quirks and differences. My neurotypical child doesn't fit the mold of "normal." Neither do I. Woo hoo!
I have no delusions that my child has challenges that are different from ones the majority of kids have. But to define him as "not normal" implies that he is wholly different than other kids, like a different species of kid. And actually, in many ways, he is like other kids. As I've said before, his personality is not disabled.
What most gets to me is that viewing your child through the lens of "not normal" isn't a healthy perspective, even if you'd never actually say those words to your kid. It's a negative attitude that is sure to seep down to a child. It's the opposite of being a cheerleader and a champion, what our kids so need. I don't want my kid growing up thinking he's not normal—or any nots whatsoever. I want him focused on the great stuff he is, and what he can do.
Considering your child "not normal" will only make others view him that way, too. Our kids have enough to overcome in this world. They don't need their own parents heightening their differences.
I don't go around thinking or saying Max is "normal." I just avoid that label, period. Its useless, for kids with special needs—and humans in general.
What say you?
Love this and I totally agree. I don't want my kid growing up with any 'nots' either!
ReplyDeleteI can see both sides on this debate and think that people use the words that make most sense to them in their current state of mind, the words they NEED to make sense of what's happening to their children, and by extension, to them as parents.
ReplyDeleteFor parents who perhaps had a period of denial (oh, there's nothing wrong with little Billy...he's fine!) recognizing that their child isn't "normal" and accepting the disability can be huge and helpful for everyone...especially little Billy.
Some people are just more literal...and literally, kids with disabilities are not normal. They take lots more effort and help to grow and learn than most kids do. Isn't that why we're tired all the time? For these parents, it might feel terribly dishonest to think of their child as normal.
For others (I'm in this group, and it sounds like you are, too) normal isn't a meaningful word because I've never met a normal person. To my way of thinking, if you think someone's normal, you just don't know them well enough! Normal is a word of exclusion...either you are or you aren't. I'm all about inclusion and acceptance, so it's not my word of choice.
Semantic discussions are important, but I try to understand where everyone is coming from rather than challenge those who pick a different approach to mine. If I had to choose language, I'd choose the politically correct term "differently abled," which acknowledges both disability and ability.
Ellen, you always provide lovely food for thought. Thank you!
While I agree the word normal tends to be pretty useless....it's pretty clear to me that no one in our household is what most people consider normal. Some days we make a better go of faking it than others, but sooner or later, everyone realizes we don't act or think the way most people do. We were that way before we had children, and my son's medical issues have actually been made easier for us to deal with because we never expected him to be "just like everyone else" - we expected that there'd be quirks, we expected that our parenting methods wouldn't jive with most people's, and we expected that growing up in a household full of geeks, he'd have some interesting perspectives on the world that most kids his age don't.
ReplyDeleteFrom an engineering standpoint, I always think about a "normal" distribution - that bell curve, with most people being about average. We're way out on the end of the curve. But that also means that *everyone* is normal, because all of the special needs our kids have are just variations on the bell curve; just things that are possible in the realm of human experience.
I agree completely! I don't think I know anyone that is "normal."
ReplyDeleteThank you for posting this today. I apparently really needed to hear what you had to say :)
My typical kids are not normal - nor am I - normal is boring - plain vanilla (Nathan's favorite flavor - so maybe he is normal - lol!) -
ReplyDeleteI am not even sure about typical being a right definition for typical children or adults - Semantics gets in the way of who we are and how we "look" at people
Years ago a woman I knew said to me - "If you hadn't said anything to me, I would have thought Nathan was totally normal" I could not even say what my reaction was because I think I just blanked out - If we want to get into "normal" I should have said - normal people have manners or, at the very least, filters
I totally agree with you! I actually wrote this post called "On 'Looking Normal'" a little awhile ago, but it took a different perspective. (http://marfmom.com/archives/3269) I wrote about how I feel the phrase invalidates what we're trying to deal with. It's not that I consider my kids "not normal" because, like you said, what is normal?, but I feel like people can use that phrase (intentionally or not) as a way to dismiss my kids as not being "autistic enough" or "marfan enough" to be a challenge or get services or what have you. Being a special needs parent is isolating enough without that attitude to contend with as well.
ReplyDeleteAlso, just want to echo what you said about how parents phrase things affecting their child's views on themselves. As someone who works closely with teenagers with chronic medical conditions, I definitely see a stark difference in the parents who see their children as disabled/not normal/limited vs those who see their children as differently abled/full of potential.
My daughter is severely mobility impaired. But she is still more alike, than different to, her peers. And I'm happy to keep reminding people of that (though I wish i didn't have to).
ReplyDeleteI steer clear of the word "normal" as well. When I have to differentiate between my child and another child who does not have a disability, I tend to use the word "typical". It seems more broad to me, even though it's still not my favorite. Have you checked out the "I am Norm" campaign? www.iamnorm.org They have a facebook page as well. Two teenagers came to speak at an inclusion conference I was at this past spring. They certainly have the right idea!
ReplyDeleteKadeira puts it well. "Normal" is as wide or as narrow as you choose.
ReplyDeleteProblems occur when definitions are too fine - which excludes a lot of kids. Or too wide "hey! we're all normal!" which makes the word a nonsense.
Saying our kids are not "normal" can be hurtful especially when we ourselves have a broad definition of the word.
I am a part of a campagin that takes it one step further by saying that people with disablities are normal because we are
ReplyDeletethe name of the campagin is I am norm
My daughter asked me recently if our family would be more normal if we had not adopted our youngest son who has CP. I started to ask her questions about her friends' family lives and she pretty quickly came up with the idea that there isn't a "normal" family life either because all of her friends' families had so many differences.
ReplyDeleteMax is Max, my son is John, do they need any more labels than that?
ReplyDeleteI sometimes attend a SN support group for mothers. Recently I met a woman from that group in a park. It was the first time she saw my daughter, and her first comment was, "Oh, she is so cute! She doesn't look like... she looks totally fine."
ReplyDeleteUh, ok. This mother has a teen daughter who didn't get enough oxygen during heart surgery at age 5. She doesn't have any genetic disorder that makes her "look like..." I never saw her daughter, but I assume this to be true.
It's one of the worst comments in my opinion. I guess it is made worse by my daughter being the most high functioning child in this mothers' support group. I've had members "compete" with me when I told them that she was so close to walking at age 2. What? She's 2 and she's almost walking? What makes you think she has SN?
I don't really go to that group anymore.
Stereo types, titles, labels, diagnosis' names, even plain old name calling can be demotivating and debilitating . When is it ever helpful and when does one word ever perfectly fit the description of one child anyway?
ReplyDeleteSuzanne
@ GAMZu--I had that type of response just recently from a nutritionist. I had just finished telling her how my son can't feed himself because he has a lot of spasticity in arms. She then said, "does he have some kind of syndrome?" I said, "No, he has cerebral palsy." She said, "Well, he doesn't look that severe." My response, "Well, I guess it depends on what your definition of severe is!" Really??? And you're supposed to be the professional! I agree with you. I think those kinds of comments, or competing for whose child is more disabled, is almost worse that the word "normal".
ReplyDeleteI agree, there is no "normal." There is "average" and who wants to be "average"? Average means there is nothing special, your boring. I want to be and want my child to be extraordinary!
ReplyDeleteThank you SOOOO much for this post. My son, too, has a mild case of cerebral palsy, and when people say "But he looks so normal," it ignores and/or minimizes all the physical therapy, occupational therapy, gazillions of dollars in medical expenses, the casting, the leg braces, etc., etc. that we've gone through. The comment about normalcy may be made innocently, but it really does minimize all that we go through and that our kids are going through - as if to say, "wow, it's really no big deal, your kid is doing just fine, what's all the consternation about?" Thanks again for the great posting - you definitely understand what our family experiences.
ReplyDeleteThank you for the wonderful article and for following up on the comments as well. Brilliantly written!!
ReplyDeleteWhoever said Normal is a good thing, anyway? Normal is average. Normal is boring.
ReplyDeletedo people think we're aliens or something?? Max is normal in his own way. I don't see his disability
ReplyDeleteNo one really knows what it's like to walk in your shoes (unless they also have a child with disabilities). However, when people say these kinds of things, I think that the majority of the time they're trying to be encouraging. It just may not come out in the right way. At the end of the day, you'll never be able to change the way people behave, you can only control your reaction to them. Those who are insensitive you can simply ignore and those who are doing their best to be encouraging, recognize that and accept their attempts. Max is a beautiful child whose smile must brighten a room. Rejoice in the wonderfully normal things about him. From what I read abut him and your photos, he seems to bring great joy and that is something to celebrate!
ReplyDeleteGreat discussion here. Susan R, I understand your p.o.v. and mostly agree—but respectfully disagree when you say that "kids with disabilities are not normal." Because none of us are "normal." Yes, it's semantics, to some extend (I'm an editor and writer—I can't help it!). But it's also an ATTITUDE.
ReplyDeleteGamZu: I hope you've found a different group of people to hang with. !
Janine: Yes, sometimes I definitely get the feeling people think Max is a different species of child.
Kim, you're right, I can't change kajillions of minds or attitudes. But I can hope the people within my circle (online and offline!) understand that Max is a kid first, and not A Kid With Special Needs.
Debbie: YEAH!!!!
So how DO you refer to non-disabled kids? In the autism community it is currently popular to refer to non-autistics as "NTs," neuro-typicals. Technically, everyone is wired differently neurologically, but autism IS a disability and the dinstinction helps in conversation sometimes. Perhaps NDs (non-disabled) would be a good term?
ReplyDeleteI call them children without disabilities. And Peggy no not really. It indicates that for those who have disabilities it 100% defines them.
DeleteBut Ellen a kid with special needs is WAY better then a "disabled" or "handicapped" kid. When people say that, I feel they are acknowledging that my kid has SN and that it doesnt define Amelia.
I dont care what people use as long as it isnt the R-word frankly. The D and H words are fine as long as people accept that the kid is not defined by them.
For me, I care less about the actual points of "normal" or the lists of 7 things that I too hate to hear people say, or the responses of everyone else. I like it and usually do read it all. What I care about more is that there is a discussion. LOTS of people are having this discussion. And we disagree or have our own points or second some of the more common points. What is "normal" for me is to be a parent that has a place to discuss what is or isn't "normal" with my child and my life. Thanks Ellen for your contribution on this.
ReplyDeleteI agree, Chelsea, it's great to have a conversation and to hear all sides. Peggy, I've used "neurotypical" but it feels a little stiff to me, and also gets into the whole typical/nontypical thing. Sometimes in my writing I'll say "so-called typical kids." If I have to make a distinction, though, ND could work as shorthand. Good idea!
ReplyDeleteLove this thread. I get this a lot "But Julian is so cute!" It's the BUT that gets me. But what?
ReplyDeleteI also get "But he doesnt LOOk like he has Down syndrome. Ok, um, he does. What is that comment supposed to mean?
Ultimately I think it boils down to the fact that if you aren't on the "inside" of the world of disabilities, you don't know the correct "preferred language" to use.
Many people use the word "normal" because that is all they know. Their definition of normal is someone without any type of disability that does not look "different" in any way.
All we can do is kindly respond to the people that offend us with nice responses to hopefully educate them and stop them from saying those things in the future.
The preferred term in the Ds community for kids who don't have cognitive/motor delays is "typically developing children"
Thanks Ellen!
"normal" is such a 6-letter word sometimes, isn't it?!
ReplyDelete"90% Normal" remains one of the more popular posts on my blog (http://doozeedad.blogspot.com/2011/03/90-normal.html ) and it stems from someone saying that my Moxie looks, you guessed it, "90% normal"
I get that we like benchmarks, places to spring from. THat we like comparing, assessing, measuring. But it does seem rather silly at the end of the day, because who really is "normal" anyway?