February 20, 2013
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what it looks like
I was listening in on a small meeting for an individual kid the other day and I was taken aback by something that was said. Not judgmentally. Either by me or the person who said it. It just surprised me and got me thinking. Someone said that it would be easier for a certain kid if you could tell by looking at him- that he looks like a normal kid and that makes it harder in situations.
Let me ‘splain. There are three kids in my class who have special needs and special one-on-one helpers in addition to varying degrees of pull-out instruction. One of them has Down Syndrome. Pretty obvious. You know that she’s not going to have the same abilities as a “normal” first grader. What you don’t know is that she has a very naughty sense of humor. One of the kids has Asberger’s Syndrome. Is it obvious when you first meet him? I don’t remember. I do know he makes me smile when he says “right you are, Mrs. Sunshine”. I know that he can read anything and that he loves to write. Even though he went through a phase when in his stories he flushed his mother down the toilet. We’ve worked through that. And he’s always talking about Becky from “Roseanne” and he’s decided his last name is Connor now. I suppose you notice when you talk to him that something is a little sideways. Then there’s the 3rd kid. He looks like a regular kid and I think when you talk to him he seems like a regular kid too. The only word he can write independently is his name (and it has a preschool feel to it.) There was talk of him being the lowest skilled child that the Autistic Support teacher has ever seen. That’s where the comment came in. That if it was obvious, we wouldn’t have unreasonable expectations for him. The general public (or whoever) would know how to treat him. (Which is actually an incredibly unrealistic thought, since the trained professionals in the school haven’t figured out how to get the best out of this kid. It seems to take a long time to figure out what’s up with a kid- since it’s so often a process of elimination.)
But none of us come with care instructions printed on our labels. No sign that says, “I may look like I understand what you’re saying, but I don’t.” No sign that says, “I didn’t get enough sleep last night, use gentle cycle.” No sign that says, “Don’t single me out, it makes me nervous.” No sign that says, “I need a hug.” “I need a smile.” “Please tell me it’s going to be ok.”
I really like this video. I like the idea of a thought bubble that could give everyone a clue. Life would be so much easier if my daughters had thought bubbles. Although sometimes it seems like they don’t even know what’s bothering them.
But we don’t have thought bubbles either. So I guess we’re stuck with paying attention. Can we figure out every secret just by paying attention? Probably not. But surely some of them, some of the time. And maybe that’s good enough.
For something completely different. My “altar”, so to speak.
Comments (57)
I had the distinct honor being able to grow up side-by-side with the kids who had IDP’s and I think it taught those of us who were privileged enough to be in that class a lot more tolerance and how to read people with disabilities better.
Also, do you play piano?
@Thatslifekid - I think it’s a beautiful thing myself. (I hope that is obvious. egads.) I believe we were kept very separate when i was growing up. actually i’m sure- dark ages and all. We have so much to offer to each other.
I do play piano. Makes me happy. (of course it might make me even happier if i ever improved, but i accept my unique version of my favorite songs.) That one is Chopin. Hard as you-know-what.
heh. love chopin. and the thoughts here, in your thought bubble, now broken open & shared
that whole idea, of how we look normal, but we’re not. is anyone, really? back a few decades ago, i took an intense change-your-life in a weekend class.;) i was struck by these lovely people, some very obviously successful executives, and the things they carried inside. rapes, murders, suicides. sometimes these things held them back, sometimes these things had moved them forward. love the altar to Euterpe
@Bels_Kaylar - there is no normal. why did i use that word? we are people. full of similarities, differences, experiences, thoughts, feelings. comparing ourselves to an “ideal”, a “normal”, a “standard” causes all the trouble.
why don’t i ever say what i mean IN the posts anymore? sigh. this is my chopin (but not me. ha)
Love your corner of the house. I think special needs children are gifted in a way more than I could ever be.
@armnatmom - they make me smile every day. well. all the kids do.
I like your altar! On the other hand there is the concept of positive and negative expectations. Food for thought….. appearance can become a label, either positive or negative. For example, research shows that taller and more attractive people of both genders do better in the corporate world.
I like the thought bubble idea and in lieu of that, maybe I can make a little sign to carry around with me.I don’t know. Do you think anyone would even care what the sign said?
@vexations - appearance is a huge label. i could talk about that for a day. but surely appearance shouldn’t count for as much as it does.
@C_L_O_G - what a sad excuse for a world if no one cared what the sign said. this seems like a cool sociology experiment to me.
Yes, I was hoping to make that point but didn’t. Good post today. You having a good evening?@promisesunshine -
@vexations - this is what i love about blogging here. our thoughts all come together to say what needs saying. i’m baking again. and loving the fact that it is only 7pm.
My 18 year old grand-daughter looks normal, but she’s not. She thinks and acts like a 5 year old. She can’t read yet. It is hard because if she decides to throw a 5 year old fit in public, people don’t know what to think. She has some autistic symptoms, but has only been diagnosed as retarded. She goes to a Catholic special ed school and has a lot of Downs Syndrome friends there. She was in public school in the past, but was never in a regular classroom.
Beautiful post from the heart.And I love your altar.
So, my brother has special needs, and to me he looks like he does. I think anyone who was talking to him would probably figure it out pretty quickly, too. But a while back someone was surprised to learn this about him after spending maybe an hour in his company. Now, granted, this someone was not the most-self-aware individual (or so it seemed, I had also only just met her), but it surprised me that someone would not immediately know.
Some of us are not good at “broadcasting” our thoughts/emotions. Some of us are terrible at receiving those broadcasts, even when they are obvious to others. Empathy is hard to get right. As is the right degree of openness. Interesting thoughts.
@ata_grandma - families of people with special needs are a different level of hero. i know there is a lot of joy, but so much hardship. that is an ugly diagnosis. i think it’s called developmental delay now. not that i’m any kind of expert on special ed. not my field.
@leaflesstree - absolutely. empathy is very hard to get right. some days more than others. i’m so worried now that i was offensive. were you offended? (not saying you seem so- you don’t. but i worry.) as far as brothers (and other family members) go, we may have some baggage that is not so obvious to others. my brother has serious hearing loss, which makes him special needs in his and my mother’s opinion. i think he’s just an ass.
@songoftheheart - thanks, jo. it really is my only space in the living room. very special to me.
@promisesunshine - Maybe it’s my mood, maybe it’s the song…I love to see you write like this, so expansive..so open with love. And everyone needs a place like that, where they surround themselves with bits and pieces of who they are, a place to reconnect, a place to nourish their heart. ((((hugs))))
@songoftheheart - i’m in love with the world lately. i think it’s the baking. or perhaps that i’m not analyzing anything, i’m just being.
@promisesunshine - LOL! Perfect answer! Love you, kiddo!
@songoftheheart - <3
what is on the sheet music?
this post really gets me. for personal reasons. I just deleted the word “selfish”, because I always feel selfish when I mention myself. even when I show my work. I have some real problems that are not visible by talking to me in the coffee shop or around town. people here have no idea what’s going on with me, in my head, or at home alone.
blarg.
@plantinthewindow - i’m sorry. did i hurt you? it’s chopin. valse op 69 #2. it’s linked up in my answer to kim. not that i play it that well. one of my favorites to play.
@promisesunshine - no. there’s a pang, but it’s just because of what is. nothing you did.
Most of us can relate to this.
@plantinthewindow - good to see you.
@Inciteful - i’m sure that’s true. unfortunately. i’m sure we’ll all felt isolation from our differences at one time and probably also felt a loved one’s isolation too. the human condition is a twisty turny thing.
we have not evolved yet where we can read the other person’s mind..we probably never will..anyhow every thing demands an effort and everything goes slow except for the satellites orbiting our planet and such other gadgets..such is the price to pay for being a human..
@locomotiv - no one wants to know what i’m thinking.
being human is all right.
@promisesunshine - :)…….
@promisesunshine - let’s try it. What do you say?
@C_L_O_G - i’d have to question the idea into the ground. how long? what would we put on the sign? where would we need to go? i’m not opposed to the idea, at all. (but you may be now)
You have a tough job, I am glad there are people like you doing it.
Phenomenal post Carrie. Right from the heart to other hearts. THANK YOU.
@ZSA_MD - thanks zakiah.
@BoulderChristina - working with children is incredibly rewarding. i love it.
I think we all need to come with instructions
a great sentiment: pay more attention
i think this can save us a lot of time and money.
but in terms of just regular human interaction, it’s so hard to read people. it is for me anyway. i often think just giving them a smile might help just a little
@bonmots - it is very hard to read grown-ups especially. we hide things. we say the opposite of what we mean. and sometimes we are so within ourselves we don’t think people care to know.
i pass out a lot of smiles. often the best thing i have to offer.
@SisterMae - yep. it would be helpful.
I came to the conclusion, years ago, that the only way people would ever understand me would be for me to understand them first. It has let this autistic human survive and thrive, for 62 years. Thanks for including one of the sweetest songs ever sung.
@RighteousBruin - i think this is an amazing comment. every human needs to practice that to survive and thrive. and i love the song too.
@promisesunshine - You described what they should say, “,…sign that says, “I may look like I understand what you’re saying, but I
don’t.” … “I didn’t get enough sleep last night, use
gentle cycle.” … “Don’t single me out, it makes me
nervous.” …, “I need a hug.” “I need a smile.” “Please
tell me it’s going to be ok.” And things like that.
I think the where would be the places were we feel comfortable doing it.
How long? I don’t know: a week, 2, 3, a month?
@C_L_O_G - i forget when your trip is. can we do it before or should we wait until after?
@promisesunshine - Probably after. I’m leaving on Wednesday the 27th.
@C_L_O_G - you name the day.
@promisesunshine - How about March 9th. You pick how many days.
@C_L_O_G - let’s do a week and see what happens. i wrote it on my calendar. “signs” then i thought i’d better add “clog” otherwise, i would have said, “what is this?”
@promisesunshine - Cool! a week it is then. I wrote The Signs Says and put promisesunshine.
I have thoughts but they are not yet formed.
My kid is the same, but he acts so abnormally that it doesn’t usually take more than a few seconds for people to figure out he is atypical. In the end, from my perspective, it doesn’t matter much, except maybe it humanizes him more for some people. For your student, I suppose it does, I mean, I could see how it could matter.
What a wonderful altar. So lovingly constructed.
It is a conundrum, for sure and I don’t know if we can ever get it “right” but boy, I am pretty glad there are people who are trying. I love, love, LOVE the pic of your pieano. Altar, indeed (amen). Had a visit with Jeff Markowitz and his lovely wife, Carol this afternoon. Entertaining people you don’t know well is such great housework motivation in general, but they specifically wanted to see my studio. (Ha! ie: tiny extra room off of my living room) So, I cleaned…I mean I vacuumed my work table! Spotless studio. Heh…now I think I should go light some candles in there.
Would love to hear you play, some time.
xxxooo
@SandraErickson - i don’t do well playing for an audience. even one i can’t see.
but maybe.
how fun to have xanga guests! i want to see your studio too. but you would absolutely NOT need to clean for me.
@promisesunshine - are you kidding? Damned straight I’ll clean for you…and then I would have to knit something (as if) or sew something (yeah…) and then fucking bake bread. ((laughing)) Best give me 6 months lead time ((ROTFL)…what fun we would have! DO come out!
xxoo
@SandraErickson - best offer i have had all week. if only i could figure out what 6 months from now would be.
@promisesunshine -
meanie macolm macdowel in star trek gereations I think it was said “normal is what everyone else is and you are not.” poppycock….which by the way of rambling is a fantastically yummy bit of popcorn gourmet cracker jack style…there is also a disgusting need to label everyone not one way or another but plumb how much can be made of them. this too is necessary enough and even helpful to some but just as unhelpful to others oh and normal is general the first step in gauging people as what really is mostly a dismissal. blah
sophistry is the fancy word of the day and yes I had to look it up
I do not know all the fancy words 
I found this out losing to girls at scrabble yikes the ego bruising. and it is fairly good at showing what could be but LIKELY never is the case. I was big so I was always the ring leader if punishments were handed down I’m not…always. I walk fairly normally and am told I’m bright so only until I have to physically read is it instantly obvious I’m quite blind. there is a line in lawrence of arabia where prince feisel talking to the reporter wanted it known that treatment of prisoners was a thing of note considered rebels they weren’t protected by the geneva convention where in the reporter asks if that was at lawrences contribution.. which blah blah blah lawrence has an abhorence of bloodshed and to prince feisel it was just good manners how to treat prisoners of war…you may judge which is the more reliable motive. long quote really but the you may judge which is more reliable motive.. seems very much to say this if we look disabled it would be easier
bubkiss.
I walk and gauge traffic for safety. I have managed no being hit by a car knock on wood I can legally carry a cane though the white cane laws have largely been repealed in this push to stop setting minorities apart with special treatment. so if I set foot near a curb with a cane as in to make a crossing of traffic it is assumed that I am walking unsafely into traffic and screech cuss whatever I’m deemed incapable instantly. I very much can half drunk jaywalk safely as in cause no one to adjust their speed and avoid accidents. looking blind instantly means incapable. it is NOT easier if there were signs as in there very much are signs. I’m lucky I can choose some of them. also I have to appear capable and yeah yeah disability act of 1974 says it is illegal to discriminate which is it’s legal meaning excepting I have to prove I can do the c. then prove they wantingly wished to discriminate against me… the old addage if I don’t get what I want I’ll sue… that was shown to be fallacious by one smart business man who said you know wrong all I have to say is I don’t like your qualifications and good luck proving eanything else… or in other words it may be unfair and that law helps a bit but the vast majority of the time it isn’t worth the paper it’s printed on. orgaization can leverage with it I an an individual can not. next is discount cards for say a public bus… I take advantage as such is helpful in not relieving me of a wallet
but not just me anyone under grey haired or in a wheelchair is considered a liar and such for taking advantage of programs for us because for good or bad mostly bad looking disabled doesn’t make it easier …for me…maybe for those more comfortable assuming me incompetant from the outset helps them but not me.
@starmanjones - i don’t mean labels. labels point out differences rather than samenesses. labels point out can’ts rather than can’s. i think we all have something unique to offer. we all have a place in the plan of the universe. i don’t want to be the person making the decision of where someone else’s place is any more than i want someone else to tell me my place.
anyhow. i’m sorry.
@promisesunshine - lol I’m not either mad nor offended but lol this touches me
yes it does.
yay me and my good luck but some of that leftover brilliance does help me in school things.
next I learned by a left out testing . I hadn’t the time to memorize it all but 13 x13 is 169 and thus
1 bu1t a1ls1o1 ju1s1t1 a1s1 w1it1h t1h1os11e br1a1in boxy1 one1s1 t1h1ere i1s1 1a f1e1w d1is1s1e1rvi1ce1s1 t1hat1 ca1n be1 d1one1 to u1s1e or1 me1 a1t l1ea1s1t1 w1ho d1id1n’t1 ge1t1 i1t a1s !I’m still want to do with social learning… I just am slower socially…don’t get me wrong I’m personable I just don’t have the same tools people now half my age do so in a way I’m further from that nonexistant norm. but it is existant I’m atypical. and not entirely patient. this lack of graceful attitude or questions of shades of doubt and the obvious I’m blind and thus slower in some work situations… this could have gone better or easier if it were harder around your guy’s age.. and yeah I was ostracized pretty good k through 3 I only later got a blessing of stable best friends but because i was easy to ignore in oversized rooms it was as it is now easy to leave me to my devices…afterall i had the answers til there wasn’t anymore. 
in that sense I’m still
because it is entirely true. I wish I showed less signs 
or whatnot because I sure chose or got harder paths 
lol
i know by what you say you tend to care deeply about your students and how to help them. even a thought to the ones needing so much more help. even if i might cautiously dislike some approaches be assured I know you care I think you do anyways shh if you do not. lol.
but think with me some on a few factors you might guess only in passing with me as I’m not in first grade and that’s what 4 lifetimes ago if not more for me now it seems.
I’m not dim there is brains in here or some seriously shiny marbles. their principal use to me is not education but shape recognition. think for a moment not seeing well with brain power to guess real fast and well is a big huge blessing
I learned in first grade by a little grid of push buttons the times table of 1-12 x 1-12 or 1 thorough 144 not particularly difficult and it put me 2 grades ahead of my classmates in that area alone. later because i’m curious and nosey i asked what the horsepower of the steamship from detroit to a then amusement park known as boblo island it is now townhomes and such not amhurstburg ontario canada if you want the physical geography yes old mark twain paddle boat. I learned that the volume of a cylindr multiplied by the steam line feed and also multiplying the rpm of the engine divided by 33k ft/lbs is the theoretical horsepower of a steam engine that is roughly 10% ish from what it really is which is a handy number and easy calculation set I memorized it before third grade woot real applied algebra.
the square root of 169 is thirteen… and those funny f’s in mathmatics mean function. no joke for being able to know this from sixth grade on I know that I show according to test a strong conceptual understanding of algebra and exposure to ccalculus. I suck at algebra. I cant build on first year.
now look, I’m not dumb but by the time you get to highschool or perhaps a little before it lol one should have a strong capacity for working through challenges and the discipline to do so… I never had to do homework before highschooland it was far to easy to skip out of it in highschool simply changing life around to suit my desires. thus time for learning study skills wasn’t gone but surely not something I developed.. oh sure I can study and it took me the same if not close enough ammount of effort in the college i did get through as anyone else but imagine how much more stressfull it is to not have the fundementals of time management and no longer having the right answers matters a damn.
the point I’m after here is simple enough I suffered the foureyes and piles worse as such was my luck. but in a world where at first it is cute to be smart and have the answers and shine later becomes I don’t know but I know ectively and such not? I don’t think I was given the attention to things that mattered more while I was in the right developmental stages to most effectively learn them worse i was show a false set of acheivements still true to this day I’m smart but rarely have the subjects to interest people hurried for time but can see i’m not dumb. the sign not label the sign that says give your little guy a break because he doesn’t get as much of it yet and gets frustrated being expected past what he might be able to acheive now seems a tough thing to endure. I feel for him but i’ll tell you this, a little frustration now learning how to manage that effectively with later more and more tools to acheive will serve that little now fellow his entire life for ages of years. he may not learn a stitch of the education either but learning the social skills to cope with what he can do will keep him more stably employed…we all seem to find a way to get what we need .. but that’s a blessing of a thing not necessarily included the lesson plans.. oh it’s fostered. but there is no roadmap or signs to us people… but lemme tell you that one a biggie there is alway a brainiac show off out there with the answers to the brain box junk
very happy there are no signs because that begot labels more than it did easing me into who i got to choose to be… but even still i showed signs many of mine were the wrong ones, I missed a few thing being easier to handle… which is a joke I was and am extremely obstinant. so when I showed a few good signs? i got left alone there wasn’t energy or time left to really sort me out better. i sure as heck like pointing that out to you
@starmanjones - holy shit, you just broke my brain.
1) signs become excuses. reasons for the signee to do less than he/she could because the expectations of the sign makers allows that. outrageous and trite example (sorry) would be helen keller. the thing is you gotta love the signee enough to use the sign as guidance but not as a stop sign. for example, the asberger’s kid would not be thrust in the middle of a group assignment with his peers. not going to go well. however, there would be less stressful social situations for him to participate in (and with guidance).
2) of course you’d be slower socially. you probably miss a lot of the nonverbal clues. but so would a person who is “really sleepy” or embarrassed in social situations.
3) that’s exactly it. you have an amazing capacity for memorization and thinking. someone with “normal” vision can be distracted. which is not what i meant to say at all. i meant to say that one sense is limited, the others compensate. which is also not what i meant to say. what i really meant is that one person may not be able to balance their checkbook, but they are a brilliant dancer. another can understand freaking functions (oh golly i hated calculus), but can’t draw a stick figure. takes a lot of people to make a beautiful world.
4)anyhow
the problem here is that you cannot legislate fairness. fairness has to be part of the innate moral code. once we put it into a law, we start nickel and diming it to death.
@promisesunshine - no law compells truth but many punish the lies
. yes signs help and sometimes the clue are easy to misguess. I can not tell you how many times for instance the dancing shirt in the darkened room closet door open was a ghost out to get me and shush up about the closet monster problem 38 years in. yes it takes all types but it stinks knowing and seeing how long a process it is to guess some special signs. lol there are blessings too yes I can filter sounds somewhat picking stuff you’d never expect of and out of symphonies so to speak of sound duh I’m blind and I play or at least know how to play a piano too..but wouldn’t it be fair that taking orchestra class had more to do with learning more distinguishment wthin sound than the haha pants stereotype?
but since you mention this take the oppositeyes those sleepy pills anti as truth too. ever notice that a bit of hearing loss makes a person really annoyed you’re shouting all the time at them… lol but tv adjusts volume so they can be loud but not shouting. also there is a time in life people do go squishy brained about where they are in the world… have you ever noticed this is after the point where someone was deaf enough that it wasn’t just a little volume issue but profound enough there’ ballance was effect. thus with balance shot there place in the world felt “lost” and thus they were. beltones and few months plus avoiding antihistamines and salt help that but some diseases affect such parts unfairly. my for instance is my own mom who bitched that the tv volume was too loud! now has it just as loud can’t hear two things at once and prefers the tv lol, but went from professional driver knowing the town like the back of her hand to the gps has a name…maybelle.
lol this and sail boat shaped building built to the golden mean lol. poor you, there is a coffee problem in progress
. isn’t there?