As the parent of a special needs child, I have grown a pretty thick skin when it comes to words. What's politically correct to say? What's the proper terminology? What's accepted language in this day and age? Can I use the word "retarded" to describe my child? Can others? Personally, I would not use the word "retarded" to describe Clare. We have no measurement of her IQ. I don't know if she actually falls in the lines of retardation. But she is delayed. She is slow to learn. She is not doing many things that are age-appropriate. So I would not be surprised if someone else used the word "retarded." (In a professional capacity, of course!) After dealing with Clare's heart issues, hearing that she is retarded is definitely not the worst of what we've heard. I will take that any day over hearing some of the stuff we have heard regarding Clare's heart.Yet I can understand how "retarded" has become politically incorrect to say. People use the word as slang now. It is used as an insult. But I feel we are now bending over backwards to find the right words to say. I am not allowed to refer to my son as "normal" because it implies my daughter is not. I AM allowed to say that Jamie is "typical," but then what do I call Clare? Atypical? And I have to make sure I am clear that Jamie is only typical of his peer group. And Clare is typical of hers. Am I permitted to use the words "special needs" anymore? How about "cognitively delayed?" Shawn and I personally thought that "genetically-challenged" sounded appropriate. Better than "differently-abled." Are you kidding me??? Part of it makes me laugh because it sounds so ridiculous. But another part of me wonders why we can't just say it like it is.
I know Clare is not normal in many ways. She is not typical of other children her age. I do not need a poster using the words "differently-abled" to make myself feel better about my child. You can refer to one of my children as "normal" and the other one as "special." It does not hurt me or offend me to hear those words used concerning Clare. They're just words. And it's the truth! Clare does have special needs. Yet I do love it when someone tells me Clare is acting like a normal kid. Whether it's because she is throwing a temper tantrum, throwing her food, refusing to take a nap or whether it's because she is chatty to all she meets, loves to play with baby dolls, and likes having her fingernails painted. When I question one of her doctors or grill a fellow mom about what other children Clare's age are doing, I am happy to hear that Clare is exhibiting "normal" behavior. That's the stuff that reminds me to treat Clare like a normal kid. To not use her "abnormality" as a get-out-of-jail-free pass. To not let her get away with things because she is not a typical 31-month old. To not just say, "Oh, she has Williams syndrome," and, therefore, excuse her behavior. I am not doing Clare any favors by making excuses for her. She may be "differently-abled," but that does not mean she is unable. Or is that helpless, incompetent, inadequate, unfitted.... oh, who knows anyway?
9 comments:
EXCELLENTLY put, Tree!! It's okay that Clare isn't the same as some kids her age - and I love that our family doesn't use Williams Syndrome as an excuse or a crutch. Clare is Clare - "normal" at times, "abnormal" at others, and exactly what she's meant to be!
I totally agree with you Theresa. If you read my last post I guess I should have followed my own advice. We try not to treat Noah any different. He has gotten corrected the same as I did my other children at this age. I am not always sure he understands but I am not going to give up on doing so. I have had 2 friends in the last 3 months that were talking about someone else and referred to that person as retarded and caught themselves in the middle of saying it and stumbled over there words. They did not offend me, but they did make me more aware of the fact that they saw Noah for his syndrome. That bothered me more than if they would have just said it and got on with the conversation. Instead I ended up feeling bad because I made someone I cared about feel uncomfortable.
Everyone is so careful to not offend, we have become a society with more euphemisms than necessary. I have to say I am guilty of something: I tend to say "WS kids". Did you know that was wrong? Apparently, I am supposed to say "children with WS" because the way I am saying it is putting the syndrome before the child. I'm sorry, but I don't have ulterior motives when I am writing.
Good post!
Here in Hungary Szabi is a kid, who "needs special education".... I think this is the phrase what I can accept.... no retarded or handicapped or sg. else....
I hope you like this phrase, maybe you can use for Clare :)))
Love, Kati
Amen, girl! I, too, have some pretty thick skin. My favorite adjective for Ava and her online compatriots is "hero", because-let's face it-who works harder to achieve the skills that most of us take for granted?
My mom calls Ava "Avamazing" because has so much respect for her perseverance. Isn't that sweet?
Thanks for the insight, Teresa. Again you have given the rest of us a safe place to say what's on our minds.
Love to you!
Kim
You are quite a 'writer', Teresa! I agree that there are just too many P.C. terms out there that quite possibly cause more hurt. There just shouldn't need to be any labels for humans - except in medical terminology of course. Clare is Clare, and Jamie is Jamie! Personally, I believe we all have our 'disabilities', you know? I think that "genetically challenged" is quite funny, and true! Love to all, Aunt Joan
OMG, your blogs are pretty intense these days, both whimsical on one end and very serious on the other Thanks for sharing your thoughts. I just tell everyone Avery is " a real piece of work(:"! Cuz she is is, lol. I do have problems disciplining her though...she is SO EMOTIONAL. Not just in a temper tantrum way, but she gets intensely sad or mad when I tell her no. And a time out would just lead to a complete hysterical meltdown. So I use the "No"/distraction technique a lot instead.
XOXO
Amy
XOXO
Amy
Oh Hey! When I first got Caleb's DX last Dec. There was a big conversation on the list serve about " Those of you with kids with WS that are doing well, How do you do it?" I was dumb and played into it, not realizing that the lady who asked was being sarcastic. I said," I have always treated Caleb like he was normal." We didn't know he had a good reason to not be doing things a 'normal' kid could do."
Well, I got totally reamed out for that.
I really think that treating Caleb no different than his sibs has helped him tremendously. Yes, he has many issues that are now explained by his DX, but I still expect everything that I expected from him before the DX. When he is grown and I look back I will be able to say that I did all I could to help him.
And when people comment quizzically (sp?) on Caleb, with one eyebrow raised telling me "He's really cute!?" and I feel like they are trying to open up a door. I say right back, "Yep, He's somethin' else!"
I guess I don't really care what terms are used anymore, as long as what comes first is Erik and all that Erik is. The root for the word "retarded" means slow...and he is delayed/slow. I'm okay with that, although there is much more to him. He has some definite disability when it comes to doing things (you should see him frozen at the playground around other kids), and I'm okay with that. We make things work for Erik, whatever that may be. I am impressed that Toys R Us has gone out on a limb to try to appeal to the huge variety of parents with kids with special needs...no matter what, someone will be POed at the terms they choose. "Differently-Abled" seems to cover a lot of diagnoses, but it does make me laugh a little. Okay...a lot. It is pretty ridiculous if I think about it. Great post.
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