Monday, September 20, 2010

Max's special powers



Ever since I wrote about Sabrina describing her brother as having "special needs," a commenter's words have been on my mind. Cheryl, who has cerebral palsy, wrote that the phrase "was banned in my house and in 25.5 years I have not heard a single family member (extended included) use that word in relation to me. I find it demeaning and degrading."

I use the words "special needs" when I need to, for lack of better ones. But I do think they make Max seem pathetic to people. Saying "He has special needs" tends to invoke The Sympathy Stare, something I know a lot of you are all too familiar with.

So this weekend, I tried new words that other moms have mentioned. We were at a big hot-dog stand down at the Jersey shore that serves franks in dog bowls. (Do we take our kids to the fanciest places or what?!) The woman there was a little brusque; she must have doled out a whole lot of dogs this summer. Then Max trotted over to the counter, with his so-need-a-haircut mop of hair, and her face lit up.

She asked if he'd liked his hot dog.

"ESSSSSSS!" said Max.

"Do you like French fries?" she asked.

Max just stared, not answering.

"Oh, does he have hearing issues?" she asked.

"No," I said. "He has special powers!"

She looked a little surprised, but then she said, "Oh, I see that!"

The tattooed, tough-looking guy working the grill said to Max, "Want to see something cool?" He directed us to the back of the stand, where he put a potato through the shredder and showed Max how French fries are made. Then Max wanted to go behind the counter to serve hot dogs, so I filled him in on child labor laws and said he is more than welcome to make dinner at our house.

"Come back anytime to see the French fries!" the guy said.

"Come back soon!" the formerly grouchy lady told us.

People are going to keep asking about Max; I'm going to keep saying "special powers." Someday, I hope Max will be able to tell people in his own words—or just tell them to mind their own business.

40 comments:

  1. I hate "special needs" and "delayed" and all the stupid labels the world has come up with that are supposed to be PC or nice. I've been using "special powers" to describe my daughter's many quirks (;o)) for awhile now! I also refer to her orthotics as her "magic boots." And, when we went through an airport security line and I explained that her "magic boots" were medical and didn't need to be taken off, the TSA staff was unbelievably nice. They had to "test" them but they did so and then said, "yep, they are MAGIC. That's what our tests say." Pretty neat. Anything to avoid the stupid sympathy stairs!

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  2. LOVE THIS. Language will continue to evolve as people understand that all children have special needs.

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  3. OMG,that is BRILLIANT! I will retweet this a couple of times over the week so that more people will see it (& I warn you now I'll probably use the offensive hashtag too in order to direct people to the new hashtag).

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  4. Love it.

    I use autism/special needs depending on the situation, but neither is really adequate.

    "Special needs" is annoying because those it applies to have the same needs as everyone else: food, shelter, education, health care, basic human respect... the needs are the same; they just may need to be met differently than for "typical" folks.

    "Autism" covers such a broad spectrum of individual ways of being that it is nearly meaningless.

    Nevertheless, sometimes you just need a shorthand way to describe the differences that exist in, but don't define, your kid.

    "Special powers" is awesome.

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  5. I love this. It brought a tear to my eye. I think it's beautiful!

    See you soon.

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  6. Special Powers! Love it. We used to call Queen Teen's orthotics "Rocket Boots." Even the therapist started using that term with all her kids.

    And although I love the Special Powers term, there are times using "special needs," is just short hand to get on with the day. I don't want to have to explain everything or come up with extra terms. I hate the word "special," but there are times it's the best word available.

    I'll see what happens when I try Special Powers. It does seem to be closer to the truth than Specical Needs

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  7. I have cerebral palsy as well and while I don't take offense to the term "special needs" I don't think it's used properly by most people. If someone with a disability does something different and people stare it would be more appropriate to say, "S/he has a disability." rather than, "S/he has special needs." It makes more sense to me to use the term when asking about accessibility for something, "S/he has special needs, s/he needs a ramp and a table a certain height to participate." Just my two cents.

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  8. Lisa, I wish you had a public profile/blog - I would look at it. I'd love more insight about your situation, to add to my ever growing knowledge about the situation my daughter will find herself in as a child /tween /teen /adult (she is two now).

    I feel like I've just been practicing how to talk about my daughter to the outside world (mostly learning not to cry, because Hannah herself is not a subject of sadness, she is joy personified but I am still pulling myself together) and I often feel I don't know much at all.

    I've known for years not to use the R word, and I've been so pleased with "special needs" over handicapped or disabled, but you've given me something to think about.

    Great post again, Ellen!

    And those dog bowls? Hilarious! I don't want my girls trying that right now though, they'd never stop, and we'd be banned from better restaurants. (I live in the town where one of your commenters here got tossed out of a California Pizza Kitchen because they don't allow strollers, even if they are "needed" for special kids).

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  9. "Special Powers" is cute and would work well for parents of younger children. Me, I'm just glad they don't say "crippled" like they all used to. If people ask me what's "wrong" with me I usually reply, "nothing" because nothing is WRONG with me.

    Sometimes I'm in a teaching mood. And sometimes I ask why they want to know which, hopefully, shows them they're being intrusive. And also makes them think about their right to ask impertinent questions of strangers.

    It mostly depends on how the question is asked and why. Whichever word you choose, just don't feel obligated to reply. It's really nobody's business but your own.

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  10. Good point Lisa. With people out of the loop "Special Needs" is shorthand to get them in the right mindset - we found this when organising a party for Ashley and going on holiday too. Most folk close to us don't need to use a descriptive phrase - Ashley is Ashley. I too am glad that truly offensive words like "Retarded" and "crippled" are out of use now. We usually say Ashley has his challenges. Because that's what they are. He is a sparkling little personality and he is developing. But when you compare him to a "normal" 5 year old (which we all do, don't we?) well, he has his challenges.
    Love the rocket boots and magic boots!

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  11. Wow, I'm not sure what to say except that it is great that you post everyone's opinion on the matter. You're a true diplomat.

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  12. Wow...I am shocked to hear "special needs" is demeaning and degrading...huh? It's as though the commenter believes this phrase is the new "R-Word." MY son IS not special needs, he HAS special needs. He wears hearing aids, glasses, orthotics, he goes to a special school, he receives outside therapy...all of these things are special!

    I think that if people used "special powers" for a while, people would start to take offense to that. The truth is people don't want to hear any label associated with disabilities applied to their child. Most likely because none of us wants our kiddos to face these problems, so it's another reminder.

    I love my son more than anything in the world, but I sure wish his chromosome were whole!

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  13. So, not to correct you on what your own daughter said, but Sabrina said that Max "needs special needs," not "has special needs." Which I LOVED, because of the double meaning there: his Maxness requires people to treat him with a bit of specialness, which in turn makes them look at their OWN specialness. And that's exactly what happened with the frank-bowl (klassy!) people: they treated him with greater-than-usual care and consideration, and they in turn had a special connection and tuning-in and awareness that helped THEM. They'll remember the interaction.

    So yes, "special needs" is a flawed term, but I don't think it should be scrapped. As Candice said, ANY word is going to have baggage and require reflection. (I think of how as a country we've cycled through words for "African-American" in the last 300 years.) We are all special, absolutely. And it would be great if we could use a more specific term that shows HOW we are special. AND I don't think we should dismiss what people WANT to be called.

    But there's also power in community: whether someone has CP, MD, MS, a spectrum diagnosis, it's good to have SOME kind of umbrella term that shows the COMMUNITY is a force to be reckoned with and deserves a place at the table.

    And FWIW, I also remember being corrected in the early '90s for saying "disabled." Then it was "differently abled." Labels come and go. What matters most is how we treat each other.

    All THAT said, I do like "special powers"!

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  14. Love all this feedback.

    As much as I dislike labels, as much as I want people to just treat Max with respect, as Margie gets at, sometimes they do come in handy. I'm obviously not going to entirely scrap "special needs" from my vocabulary—as Squillo and Lisa point out, that instantly recognizable phrase can come in handy sometimes. "Special powers" obviously won't work on, say, an insurance claim form!

    Oh, and Margie, I so love "his Maxness requires people to treat him with a bit of specialness." But I still prefer "special powers" because it's positive—and it might open up some good discussions.

    As with everything in parenting, I'll have to keep figuring this out as I go along.

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  15. I say special needs, but generally make a point to say that ALL children have special needs, some more special than others. I love the response grouchy lady and fry guy gave you-gave me a smile :)

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  16. I love that! I am going to have to steal it if that's ok.

    I love when grumpy people are transformed by our kids with their "special powers." It always makes me wonder if there is some back story. Did they/do they have a family member who is similar? What's their history?

    Whatever, it doesn't matter. I have been told by many people that my son has "made their day" and I have seen many a crab turned around by my son's smile and various hijinks and well, that makes MY day for sure!

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  17. Hot Topic!

    I'm deaf, work in the disability industry AND now have a daughter with Down syndrome. I'm up to my neck in words like 'special needs'. They, like the word 'disability' bother me oodles. And the opposites do too, the stuff that puts a spotlight on the 'ability' part of disability and thus seems to SCREAM 'difference'.

    Personally? I think anything that sounds more frolic-some and fun than not is better. Magic boots! Special powers! I'd take those any day over 'special needs'. But that's just me.

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  18. "Special Powers".....I LOVE it! I'm stealing it! :)

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  19. Awww that is Awesome-"Special Powers" :)

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  20. I've always felt a little awkward using the phrase "special needs," but I like it better than "delayed," and since we aren't 100% sure M. has autism, I'd rather use special needs than autism at this point.

    I think when it comes to phrasing, it really depends on what the particular person/parents want. I have a disability but I wouldn't use the term special needs to talk about my disorder, b/c it doesn't require assistive devices. I prefer to use differently abled. Sometimes people get upset that I don't like the word disabled, but labeling matters! I work with teens with my disorder and those who consider themselves disabled have a VERY different outlook on themselves than those who use the term differently abled.

    For that reason, I think a term like "special powers" is awesome! I don't know if I'll use it now, when my son is still so unaware of what's going on, but as he gets older I think I'll switch to it.

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  21. I do not mind the phrase "special needs" at all.

    I think the others are cute and fun and should be used simply because of that.

    For me my daughter has CP. She isn't CP. She has a disability and she does have special needs.

    My princess does have a "label" That is just a fact of life and I am ok with that.

    On this journey I have made an effort to make sure people see my daughter for who she is no matter what she can or can not do.

    This has been my mission and until the day comes when someone looks at me and says Makenzie IS CP or she IS special needs or she IS the r word I am fine with any of it.

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  22. I wrote about this same topic last week. I've decided that my son's Special Needs class should be renamed JEDI -- Justice for Exceptionally Developing Individuals. Spec. Ed teachers can be JEDI masters. When special needs kids are mainstreamed into traditional classes, all the other kids would be all, "oooh, cool, we're getting a JEDI!"

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  23. Special powers? I love this. You are probably more correct than you know.

    Each person who has one area of weakness will immediately accommodate in another area so your Max probably does have many, many powers we "normal" folk would find useful!

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  24. I read all the comments and I have to say, I go both ways. I think it's nice, reaffirming and supportive to say "Super Powers". It shows an acceptance and the positive spirit of diagnosis....however, I also see that my son has 5 different diagnosis. Super Powers doesn't really describe him. He actually has special needs. His powers don't explain why he needs to be met by an aid every day and dropped off by the same...why the sense of grouping / belonging is so rigid with him (why I don't belong in the school and therefore can't walk him in without casing problems). It doesn't explain the quirks that can be fine one day or one minute and be melted into a hurricane the next. When I speak to professionals, on boards or in groups, "Special Powers" doesn't cut it - for explanation, understanding, or professionalism. However, talking to another child about my son...special powers is perfect.

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  25. Even some "typical" people are insulted by the term "special needs" because they feel it implies that their child's needs aren't special- or that their child isn't special.
    Being in a wheelchair, one of my boys has a more obvious disability than his brother. People tend to just get quiet and stare- or as my nurse observed today, some ppl like to come up to them and high five them (she's annoyed by this solely for germ concern) but it doesn't bother me, I love it. I'm going to try the magical powers on someone one day. But for now, I really just say "oh, they were born too soon". It's quite obvious their needs are not the same as mine or theirs.

    Love that you had that moment at the boardwalk! Those are the times you should think about when you have those crappy encounters.

    Kerry

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  26. Great story. "Special powers" is cute. It would be nice if we didn't need labels, but we do. For now, the known label is "special needs" to describe our children. When you say special needs others at least have a small clue to what the situation is.

    When I need to, I say that my son has Asperger's - it's on the Autism spectrum.

    I'm stubborn and don't really like the terms special needs or disability. I frequently talk with my son about how everybody is different. Not good, bad or less than - just different.

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  27. Lisa,
    I like what you have to say. I also have Cerebral Palsy and am not a huge fan of the term "special needs." I am also a special education teacher and I have never used that terminology "on" my students, regardless of their level of ability. Like you, I teach them and others to be clear and specific about WHAT their needs are. I am not opposed to the term disabled. Or even "differently abled." I don't even like to use the term "special" education and normally refer to my room as a place to get some extra help.

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  28. I have CP as well, am 18, and am not a fan of the term special needs either. Special powers is cool for little kids, but I just prefer to say that I have a disability or that I'm disabled.... because I am. The term 'differently abled' also irritates me, but I figure that people can use whatever words they like to describe themselves or their children. Their choice of words, not mine so if they like the term, then good for them.

    Oh, but the one I hate most is 'handicapped'. I mean, unless I'm playing golf, I don't have a handicap. It's just one of those things that really grates me. Am I the only one who can't stand (sit, if we're being literal) it?

    Anyhow, nice post.

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  29. Good, thought-provoking post. My wife and I have a disabled - er, special needs - er, specially powered - daughter. However you want to say it, that's entirely up to you.

    We're so used to dealing with the special needs department of the children's hospital we go to, that we don't mind the phrase. Of course, whatever our daughter decides when she's old enough to make such decisions, we will respect that over anything we prefer.

    Regardless, it's interesting seeing other people's reactions and comments.

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  30. We don't use special needs - it's kind of 'icky'. Special needs as an explanation for an action, behaviour or disability doesn't say or explain anything.

    I was fortunate to hear Concordia University’s Tim Loreman speak... he says:
    “Children do not have special needs. 
 They have human needs - 
 to be loved and love, 
to feel safe and welcome, 
to move about their environments and to learn to find their place in the world. “Special” are all of those weird and wonderful things 
we do instead of doing this.”

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  31. this is a little bit different but I'm really annoyed but the term special needs kids. I don't know why it bugs me so much but any time I try to type it I have to change it to child with special needs.

    the term itself doesn't bother me though. I could say my son is disabled, which is true, but I don't think it gives the impression on how disabled he really is. of course, that's also like the term CP... just a big umbrella term.

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  32. Gina, that is now my new favorite quote of all time. Thank you. You always share such good stuff.

    Christy, there is a huge movement out there called "people-first language"—the idea is to put the person before the disability, just like you're instinctively doing. I have gotten called out here on the blog for writing "special needs kids" on occasion. I am not always fastidious about it, but philosophically, I agree!

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  33. thank you for sharing! even thought my son does not speak, i want to use language that he would want to use in describing his "special powers"!

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  34. I use such language, though am more sensitive around others with children wih disabilities. NEVER would I say something in front of a child to make him or her feel different. I say "differently abled" "special needs" and on occasion "handicapped" or even "mentally challenged" or in textbook form, "mentally retarded", though that one usually out of angst because despite being slow, my four year old is so, so bright. And that is not just because I am her sister. She may have Down's, but she's anything but stupid.

    Then again, I'm also the kind to ask a person what their child's disability is - again, never in front of the child. But that's because I LOVE to talk about my Hannah's DS. I see nothing wrong with asking questions. We all want awareness of people/children with differences, yet at the same time, wish to censor this. It makes little sense to me.

    But then again, I'm "different" too. Blessed (and clinically diagnosed) with Asperger Syndrome, whew boy! God, my fathers genes must SUCK ;]

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  35. awesome! We tiptoe around all of the medical terms and it bugs me. I often tell kids who ask "what's wrong with her?" a simple "that's how she is, she's special"

    I am fearful that once she heard me using "special powers" I would be cleaning up more broken household objects from Miss Thang testing out her hidden abilities.

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  36. Great perspective, and great comments! My friend says the term "special needs" just makes her think of her kid at a restaurant - no ketchup, no pickles, no mustard, etc. This conversation is making me think about how I'm am going to frame my son's autism for him, when he's ready to start understanding that he approaches the world a little differently from other people.

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  37. I was away at the ADAPT national action when you wrote this. I'm sorry I've taken so long to get to this, because "SPECIAL POWERS" is driving me NUTS. ICK! Seriously, STOP IT! You seemed to have entirely missed the point of my previous comment. It's SPECIAL that is the problem. How is "SPECIAL powers" different then "SPECIAL needs?" Actually, IMHO, it's WORSE. MORE patronizing.

    What's wrong with saying to the hot dog lady "No, he has cerebral palsy." Or saying to kids, who obviously won't know what it means, "Max has a disability, cerebral palsy, which means that the muscles that help him walk and talk work different."

    Again, what does SPECIAL have to do with it?

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    Replies
    1. I am autistic and my special powers are intellect and zeal.

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  38. Max's special powers are zeal and inspiration.

    Mine are intellect, zeal, inspiration, and productivity.

    But zeal and inspiration are more needed in this world than intellect and productivity.

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Thanks for sharing!



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