-- Ernest Hemingway
-----Yeah, I saw it.
It didn't call me out, not by name. But the language felt familiar. The author is someone with whom I've corresponded a few times, and when I went back and looked at her emails, I discovered why her essay triggered a sense of deja vu. She'd said almost exactly the same thing to me in email, in response to my own use of the word "broken".
But that was almost two years ago.
I don't know what triggered this essay, and really, it doesn't matter. When you're the parent of a child with a disability, your life becomes a cycle of routine and unpredictability. It makes for a curious emotional mix, in which you find yourself struggling not to fall into a rut and at the same time struggling to avoid being knocked off the rails by the unexpected. (Ruts and rails. I'm mixing metaphors, sorry.) I don't know what brought this topic back up again, but it's obviously just as real for her now as it was two years ago, and I understand that completely.
I guess what I'm trying to say is that I'd be a hypocrite if I were to suggest that Michelle O'Neil is somehow wrong to speak her opinion about my word usage. There seems to be a perception among some that the disability community has (or should have) a universal approach to things like language, but nothing could be further from the truth. I have many issues with People First Language; I personally can't imagine anything worse than asking a child to "take ownership" of their disability while somehow believing that they can do so without also taking responsibility for it. But one thing that truly pets my fur backwards is the idea that People First Language MUST become standard usage within the disability community, professional and family alike. We don't all approach disability in the same way, and Michelle O'Neil's opinion about my use of language is as valid as anyone's. Well, of course it is.
At the same time, however, there was one part of her essay that troubled me.
The term "broken" continues to float around a bit in special needs circles. It peaks my curiosity, but no longer stings.
At best it is an attempt at conveying the struggle and challenges a special needs child faces. In no way do I dismiss those challenges. Our family faces plenty of challenges, but some children and parents deal with more than I can ever imagine and I mean no disrespect. At worst, however, the use of the term "broken" in reference to a child with special needs is a publicity stunt aimed toward offending.
I appreciate that she means no disrespect, but I guess I should be clear about something now. There are particular aspects of my writing that exist to get your attention. And when I feel like someone needs to be called out, I don't hesitate to do so. (Hi, Bernie Goldberg.) But where disabilities and parenting are concerned, I'm not sure exactly what I would hope to accomplish by intentionally offending other parents, people whose philosophies and approaches and sources of inspiration may differ from mine, but whose struggles and pain are all too familiar.
When I put Schuyler on a t-shirt or program Pinkessa to shill for A&W Root Beer, then you'll have your publicity stunt. (Note to A&W: Call me.)
"What will Schuyler think when she reads that you believe she's broken?" I'm asked, and the implication is that Schuyler will be hurt and insulted by the word. But to me, the question itself is offensive. It suggests that Schuyler is simple enough and unaware enough that she'll never know the difference, if only the people around her choose the right words.
Schuyler knows. When a TSA agent sarcastically asked her if she could talk, she simply answered "No," without sadness or regret or hurt. She knows, and she compensates, and while her lack of anxiety or sadness about her condition may not last forever, her understanding of exactly who and what she is and what she can be will always be her greatest strength.
"I can't talk," Schuyler says simply, her hand on her throat, but even as the listener begins to make that face, the one etched in unwanted pity, Schuyler is reaching for Pinkessa, impatiently waiting for it to power up so she can tell you that her name is Schuyler, and she's ten years old, and she has a dog named Max and a hamster named Swee. She's broken, and she knows it, but she's got a hell of a fix for that, and she's waiting for you to be impressed. Which you should be.
Broken things of little value are discarded. Broken things of worth are made whole again. Despite all my self-doubts, I continue to flatter myself enough to believe that come what may, Schuyler will always know in which of those categories she belongs.
I'm with you. It' such an insult to pretend people with disabilities don't know they're disabled.
ReplyDelete"What? I'm blind? I wish you hadn't told me so I wouldn't be blind."
No one knows better than Schuyler that people don't always understand her. She's great at filtering when she should keep trying or just let it go.
Airport security guy: answer and move on.
Waitress who can bring me ice cream: continue until understood.
I completely agree. We don't often enough give people with special needs the credit they deserve. They're way to often underestimated.
ReplyDeleteI feel the same way when people say, "Oh, they can't do that due to their disability." In the short run that may have some truth to it but I believe if their not pushed the same way we would push a child without a disability they won't grow. My response is always, "Well, let's find another way for them to accomplish that then." And often when they do reach that goal or milestone they are freaking proud to prove those other people wrong. It may not always be "the conventional way" but (to get back to your original point) a broken child has the ability to be "fixed".
-End Rant.-
"Broken things of little value are discarded. Broken things of worth are made whole again."
ReplyDeleteI love this.
This reminds me of the concept of "tikkun", that the *world* is broken, and we spend our lives trying to fix a tiny fragment of it. That does not mean the world is not beautiful, or worthwhile, even if we know we can't fix it before we die. Or if it can't fix itself.
ReplyDeleteLife is full of brokenness. People with disabilities wear their brokenness in more visible ways, but nobody is really free from it. One of the disabled bloggers I read calls the non-disabled "temporarily abled" because if accident or illness doesn't get them, then old age will. In the end, almost all of us end up with crutches, canes, medications, and bodies that fail us.
I admit I've never told my children they have autism. Mostly b/c it's never came up and then my eldest (10) informed me a year ago he didn't have autism his brother (8) did. He's going to be "fine", so we won't be having that discussion for a while. The youngest doesn't know what autism is, or the language to understand.. so what's the pt.
ReplyDeleteWhat I dislike is when people label themselves and their children as "autistic"... Do they not have names???
First off, that photo? Is she suddenly a preteen and 6 feet tall? I mean, the stunning beauty, I have come to expect, but she's so grown up!
ReplyDelete(Sorry, but it had to be said, even if it is by a virtual stranger.)
Second, geez louise. In the end (and I know you know this), the only opinion that matters on the word "broken" is Schuyler's. It always feels like the people who object to your use of the word somehow think you are whispering it behind Schuyler's back, like she's never heard you use the word in reference to her...like it would be news to her. I trust that Schuyler knows the love, frustration, determination and commitment that come along with your use of the word broken.
Funny you should post this. We just got some sort of magazine with an article about using "People-first" language. I read it and laughed. To me, it's like there's something to hide. I don't see the point of making a disability seem any less bad than it really is. What good does that do? Being politically correct benefits no one, except making the speaker/writer feel better.
ReplyDeletegreat post... Amen!
ReplyDeleteI think that it is worth mentioning here that before I wrote this, I did send a message to Hopeful Parents, asking how I might publish an article on the site. It's possible that they are simply not responding to emails during the holidays, but I never received a reply. I do think that a response from me on this topic would have been more appropriate over there.
ReplyDeleteWhat she calls "publicity stunts" I call powerful writing. She is so bitter she might be, well, broken too.
ReplyDeleteI am very mildly broken, but the way my parents acted like it was a major deal-but- now that I look back at things- it was inconvenient that I needed extra ortho and I was expensive-
ReplyDeleteIt wasn't until I was an adult that I realized that the way I walk is part of who I am, not bad or ugly or anything. If Schuyler doesn't see broken as a derogetory term- and she knows she's not inconvenient- she's one up on alot of people whose parents don't talk about the broken parts except in terms of expense and inconvenience.
I am impress and now I am crying. I love my nephew so much. I don't think he will ever truly know that he is broken but my brother & sister in law have done a wonderful job. I love asking him questions about stuff that excites him. He lights up like a Christmas tree.
ReplyDeleteThank you for sharing.
I don't have a problem with broken, but do have a huge problem with the 'these kids are a sparkling ray of light' alternative language. Sometimes my dyspraxic 5yo is just a huge pain in the butt for reasons attributable to the dyspraxia or not. To me broken means not working as well as it should/could. It shows me where to help more and worry less. For us, acknowledging that something isn't working as you expect it to is the way forward.
ReplyDeleteIsn't everything, and everyone, broken to some extent? I'm broken because of nerve damage to a leg, so I can't do steps, and have problems with uneven ground. I'm broken because my body can't handle a lot of foods, so I don't eat them. I'm no fun to go out to dinner with. My friends have to check out theaters, and other venues out to make sure I can get in them!
ReplyDeleteI certainly respect the friends I have of children with disabilities who dislike the use of many of the words. I strive to be very respectful at all times, but the language isn't always the way to do it. A long-time friend of mine who has been in assistive technology since it existed once told me, "I'm blind. I'm not visually impaired, get it right."
If that's what he wants, that's what I'll go with. Love the statement about things of worth!
I admire you so much for this post. I think we've taken people first way too far. It's like we are supposed to be so nonoffensive that we've gone too far in the opposite direction, to the point of being untruthful about the person and unrealistic about a prognosis.
ReplyDeleteI think I'm going to get straight to the point with all of this (and I did just that over at Hopeful Parents, I think)...that Schuyler has gorgeous hands.
ReplyDeleteWhen I first read about people first language my little one was only 18 mo and I thought that was definitely the way to go. As though it was out of respect for her. And then as she got older I realised that I was doing her and myself a serious injustice.
ReplyDeletePeople first language makes everyone around us nervous..."Are we saying the right things", "maybe I should shut up and not say anything" blah blah blah. It got to the point where our friends kinda avoided us and our families just avoided the topic.
Not only that but people first language made it seem like our lives were a walk in the park....HOLY CRAP!!!! That is so far from the freakin truth. It allowed my mother in law to act as though we had a baby all the time and that life was just perfect for us.
Nuh uh...not a walk in the park and that 4 1/2 yo baby is getting bloody heavy...add to that the fact that she can't speak and tell me whats wrong....Yep, I agree with broken totally. It's what keeps this whole experience real. For me, for her dad, for my daughter and for all those people around us that were somewhat protected by people first language.
And you know what, friends and family are more relaxed about talking about Ayla and her condition now that our language around her is real.
Rob, I'm one of those people who've been reading you before the book, before there were blogs, before the monster, before the amazing little girl herself and in that time I've commented maybe twice. But I am going to chime in here because honestly I don't think that you and Michelle are really that different. And just to be put in my (ridiculous to put it in these terms) ante, my five year old daughter Ruby was born with heart defects, cranial-facial issues, sees a speech therapist and physical therapist, was diagnosed with cancer in April and last month finally was officially diagnosed deaf in her left ear. She could be described as both special needs and "broken" – words I neither use nor are offended by.
ReplyDeleteThere is something the "special needs" community always seems to miss in their rush to avoid any assessment of damage and that, to my mind, is the very real idea that what one view describes as broken another equally valid perspective calls diverse. In my experience, every special needs or broken child has one thing is common; being strong resilient little creatures, they adapt -- be they autistic, speechless, deaf, or whatever. And it is in this adaption that the entire human race has moved forward. It is an easy exercise to look back in history and compare the contributions of the "normal" people to those with what we would now classify as "atypical." I've never done the count but my instinct tells me that atypical would win hands down from a ratio perspective. We need the atypical kids; they more often then the normal kids grow up to be the Einstein's, Mozart’s, and Picasso's of their generation.
Here is an honest question that takes this idea to the next level. Do you think you and Julie are the biggest reason that Schuyler is as amazing as she is OR could it be that the same monster that scares the crap out of you all is the one of the biggest things that makes her so awesome? The strength it brings out in her has become the fire that hardens the steel of her character. How quick can you be to call that fire (as hot and unpleasant as it is) damage and its result a broken little girl? I think that this is kind of the point the overly sensitive language Nazi’s are trying to make. Broken implies that fixed is better -- maybe it isn't; maybe it's just easier. I hate every tear, every hurt feeling, every diagnosis that has ever challenged the happiness of my Ruby; but I also respect like hell the strength it has given her to face down things I don't know many people could handle as well. I have to image you feel the same… as does Michelle.
Let’s put this another way (call it sound bite logic); if their were only one penguin in the world would we call it broken because it doesn't fly, only one bat broken because it doesn't see, only one snake broken because it doesn't walk. Perhaps it is our different (or broken) children that are the ones with a special mission for their time with us and the world. Maybe it is our job as parents not to fix them (or coddle them with safe language) but instead help them maximize their potential as diverse entities and give them the love and confidence they need to go out into the world and kick some ass as only a kid whose soul has been hardened in the fire of "damage" like your Schuyler, my Ruby, or Michelle's Riley can. You use damage to be honest; she uses “special needs” to value the diversity – maybe they just aren’t that different.
Erik
Okay, can I air a pet peeve here? There are so many writers on the net who can't write --- Rob, you are not one of these people, but the passage you quoted --- "It peaks my curiosity" --- come on, you illiterate tool --- the word is 'pique'. PIQUE.
ReplyDeleteIt makes me automatically discount anything that follows this poor use of language as not worth reading.
http://www.wsu.edu/~brians/errors/peaked.html
I SO admire your incredibly articulate writing and adore Schuyler beyond words! You and Julie are blessed to have this wonderful child. A safe, healthy and Happy New Year to your family.
ReplyDeleteAs a fellow parent of a "broken" child (screw the semantics, "it is what it is"), I will continue to follow your blog -- fingers crossed that Schuyler stays healthy and continues to progress so beautifully. She is so beautiful.
All the best -- Stacey
"Blessed are the cracked, for they let in the light." Marx (Groucho Marx)
ReplyDeleteWhile I certainly use person-first language professionally I don't use it personally (mean self referentially) and in many ways I think that is what this comes down to.
Those in the disabled community get to define themselves and it won't be just one definition. Those outside, the professionals, helpers and caregivers need to use the most respectful language possible.
So I might call myself broken and cracked in reference to my depression and PTSD, but I cannot call the students with disabilities I work with broken or cracked in my role as a professional.
Much like the "Ban the R-Word" rhetoric the issue isn't really the words, the issue is stigma and respect. Some other word will replace the R-word if we don't teach the world about respecting those who are intellectually different. The words become the straw man.
All in all, right on Rob.
I would like to chime in with my general dislike of the term "disabled". What was wrong with "handicapped"? A handicap is a challenge or added burden, something to overcome or get by in spite of. I think of Harrison Bergeron covered in weights and blinders and such.
ReplyDeleteIf you "disable" something, what does that usually mean? It means you render it nonfunctional. Not partially functional, a disabled item is generally seen as simply not working for whatever reason.
I would much rather consider myself to have a challenge to overcome, or a burden to bear, than to think I'm not functional.
I just wanted to express my support for you, and for your use of the word "broken". And my frustration with people, whoever they may be, that feel the need to be critical of word usage. They only show their own ignorant insecurity.
ReplyDeleteTerminology be darned, that's a fabulous pic of Schuyler! As one of those formerly "broken" children who they spent too many years trying to "fix" (now I'm just a "broken" adult, who had to fight like crazy not to fall through the gaping chasms in the system), I knew I had issues before they ever put some kind of formal label to them. However, I also knew I had intrinsic worth even as they focused far too intently on what was "wrong" with me. It took me far too many years to come to the place where I could do that well enough to find a niche despite my disabilities, but here we are. Someday I may finally write that book I've been trying to come up with for years now...I've read yours and it was good stuff. She's lucky to have you in her corner!
ReplyDeleteI noticed that someone commented on the post that she should have said "piqued" instead of "peaked." I noticed it too, and I will thus disregard anything the writer writes!
ReplyDeleteNightfall: From my experiences with the disabled community in the UK, I believe the word "handicapped" is considered pejorative because of its similarity to "cap in hand". In other words, begging. Some people noticed that "handicapped" was like "cap in hand" and didn't like the assumption that begging was all a disabled person was capable of/the only way in which a disabled person could earn income to live.
ReplyDeleteFrom my experiences with dictionaries, I believe that "handicapped" has about as much to do with "cap in hand" as "niggardly" has to do with a US racial epithet, but once the association has been sown in people's heads, it can't be undone. I'm actually quite happy with the word "disabled", not least of all because it allows me to make the bad pun every time I'm in a "disabled lift" and it takes forever to move ("I wanted a lift that works properly!").
I have to agree with you about the language thing. Some people are so offended by things I consider to be no big deal. We can't walk on eggshells all the time, and we shouldn't have to around people who should understand the sentiment.
ReplyDeleteMy friend felt she had to apologize for using the term "special needs" in regards to her daughter with Down Syndrome...it makes no sense to me. Aren't there better things to worry about?
I've noticed that the issue always seems to boil down to "some people feel..." or "it comes across to some people as..." I think the mistake that People First and the Sensitive Happy-Happy Talk movements make is that they feel bound not to offend Some People.
ReplyDeleteHere's some wisdom from the mouth of someone who has certainly stepped on toes in my life: Some People are waiting to be offended. Some People exist almost entirely to be offended. Until you paint the world grey and turn every person living in it into identical versions of the sad blob from those anti-depressant commercials, Some People will always have something to say about the language you use and the philosophy that you live in order to get through the day.
And through it all, the people who are the most affected, whether they are disabled, handicapped, crippled, broken, differently abled ("I can fly!"), or God's Special Little Angels, they continue living their lives, which are messy and hard and full of obstacles, but also victories the likes of which you and I can only dream. And those victories come from their hard work and the love and support of the people around them, not so much from the gentle language that they are subjected to.
This whole discussion reminds me of Barbara Ehrenreich's new book, "Bright-Sided." It's about her ordeal with breast cancer and the relentless pressure to be upbeat, smiley-faced, see cancer as a gift, etc. I think there's a relationship with People First Language here that bears looking into...
ReplyDeleteI have taught deaf kids for years. I have watched them go from hearing impaired to hearing handicapped and now to Deaf. When people ask me what I do, and I say I teach deaf kids, their response is often something like "oh, that's so wonderful!" or "oh, how fascinating!" or some such stuff. The truth is, on some days, it IS wonderful, because I have (mostly) good kids. But I also have terrible days where I want to wring their necks. The fact is, they're kids and just about the only thing that they can all claim is deafness. None of them are "special angels" or "special gifts from God" and they would certainly laugh their heads off if they ever thought I thought of them that way. They like me because I treat them with respect for who they are as people, and not as people with a disability. They don't need to be reminded that they can't hear -- they live in a world designed for hearing, able bodied people. So, in some small way, I guess the vocabulary to describe who they are is important, but mostly, we just try to get through the day with dignity, respect, and hopefully a few new skills that will eventually take them on their merry way on the road to becoming tax-paying citizens.
ReplyDeleteAnd, by the way, I noticed that the other blog that inspired Rob's post had to turn off the comments because it turned into profanity-laced name calling. I guess none of them are special angels.
Responding to the "piqued" comment. As the mom of a child with severe orthographic dysgraphia, it stings to hear someone say that they will disregard anything written by someone who confuses "peaked" and "piqued." My child will always struggle with spelling and writing because of his disability, and it hurts to know that people will discount what he writes. No matter that he is one of the most creative and gifted people I've ever known; if he can't spell due to a disability then tune him out. Chances are the person who misused the word "peaked" does not have a disability, but what if s/he did?
ReplyDeleteI hear what you're saying. I think the issue might be that the person who made the "peaked/piqued" error is someone who writes professionally. I would never disregard someone's opinion because of an error like that, and god knows I've made worse, but still. As a published author, I'd fully expect to be called out on it if I did something like that. (And trust me, I do. Often. You people are unforgiving.)
ReplyDeleteI agree with you. I am tired of the super sensitive People first language. one of my students who was proudly wearing her "Don't tick me off tee shirt" was told she had to remove it as it was offensive. She came in my classroom room crying. It didn't offend her and she is the one who has tourette's syndrome!
ReplyDeleteRegarding peaked/piqued, I think that a professional writer should know the difference, especially since the point of the article was about the words people choose to describe disability. It's not a spelling error; she chose the wrong word. A pervasive spelling problem is a different thing, whether or not it is due to disability.
ReplyDeleteRob I read your book just after my daughter was born and I have so appreciated your counter to the 'special little angle' rhetoric.
ReplyDeleteKeep on offending. ;)
I love the sass in that photo.
ReplyDeleteSchuyler may be offended by the term someday. Not because she's simple but because how she feels about her childhood and her parents actions is unknowable now.
ReplyDeleteSchuyler may embrace the term as you have or she may be infuriated by it.
I figure the best I can do is make what I believe to be the right choice now yet also remain open to hearing from my son that he viewed the choice as the wrong one, as one that eventually hurt him.
After my earlier flippant comment, I felt compelled to comment further about this subject on my own blog. Thank you, Robert, for the inspiration -- as always.
ReplyDeleteThe world is full of beauty and brokenness. Your daughter cannot be "fixed", but that doesn't mean she can't (well, hasn't, really) overcome the part that is broken. She IS beautiful!
ReplyDeleteThis comment thread is hard for me since the only 2 blogs I follow about parenting children with special needs (or whatever you want to call it), are yours and Michelle's. I do not have a special needs child, I follow these blogs because I find both you and Michelle to be insightful, thought provoking and mindful. Your witty writings are inspiring and help me in my approach not just to parenting, but to life in general. That so many readers are so quick to dismiss her as a non person for making a fairly common error in word choice is very upsetting. While I happen to fall on your side of the "broken" debate in general, I understand her point as well. Truth is, Schuyler has a clearer "broken" part. Michelle's Riley has more diverse and subtle issues. "Broken" is a word Schuyler can work with. My feeling is that it would only wound and demoralize Riley. This all needs to be addressed on a case by case basis. I am sad that emotions seem to be running so high.
ReplyDelete-e-
-e-
As someone who works in the disabilities field I have learned that it is not the words you use that matter, but the sentiment behind those words. You are giving Schuyler a gift by honoring who she is (dyed hair and all as a little one) rather than screwing around with semantics. Keep it up.
ReplyDeleteAnybody who has spent two minutes on your blog can easily see how much you adore your daughter, and if it's this obvious for a complete stranger, I'm pretty sure that Schuyler can see it as well, and feels loved and accepted and appreciated.
ReplyDeleteThere are certain words that make me wince, but 'broken' is not one of them. And I prefer it when people call my daughter 'disabled' rather than saying something awkward such as 'kids like this' in order to avoid non-PC words.
In response to -e- anonymous
ReplyDeleteI think you make a good point. I don't read Michelle's blog, but I do read this one. And as a person whose spelling and grammar leaves something to be desired, I too hope people aren't dismissing someone just for a bad typo (even if she is a professional writer and should "know better").
I wonder if another point in your post isn't more telling. For many people, the word "broken" is problematic because their kids really are different and struggling, but perhaps they aren't as affected as other people's. For instance, my neurotypical son can't really sign well yet, but if someone said he was broken (as opposed to struggling to get better) I would be offended. He'll get there. Give him time.
However, my daughter can't walk, can't talk, and is blissfully unaware that she is dragging years behind her typical peers. She is clearly "broken" to anyone that meets her, and truthfully, she will never be cognitively able to recognize the word let alone the meaning. No one meeting my daughter would be fooled into thinking all is well with her for a second.
So I am not offended by the word. I have enough battles to fight. I can see where other people might be offended, but I don't think they should push their belief system on me. I too believe in calling a spade a spade, and trying to adopt an attitude like all is perfect with my daughter just the way she is, is both demoralizing and insulting to her and to me.
R.
Re: piqued/peaked and professional writers
ReplyDeleteAs Rob no doubt knows, professional print writers don't have to be perfect (and often are far from it). They have editors. And editors have to be perfect; they're the ones who will catch it for letting usage errors slip through.
Rob does pretty well on his (un-edited, I assume) blog, but I'm also sure his book editor is awesome, or at least that Rob would not dare argue the point. :)
Great essay. I agree with you.
ReplyDeleteI have to say, as unpopular as this view may be, I agree with you on the People First Language bandwagon. No, I don't think people should use insulting language, TO ANYONE. "Bitch" is such a commonality these days, on TV and regular conversation, and even casual use in the workplace, but I don't see anyone up in arms over the use of that word, or reminding them of the forwards women have fought and still fight for equality and respect. And I do not believe that censorship is an answer to anything. I believe the responsibility of censorship belongs with ourselves. WE have to decide whether we are going to use respectful language toward one another. I do believe we need to be careful with our words, but that lies for each and every person to choose to do that. And I think there's also a big difference between saying something like, "Aw, fuck it" or "You are a complete fuck". One is a mere comment, not using the word to harm another person. The other is using the phrase to harm someone. This is where the difference lies.
ReplyDeleteIt's so interesting that you have such a hard time with the term, "retarded", but you are comfortable with "broken". It seems like either term could affect people the same way- negative expectations of these kids and limited in potential.
ReplyDeleteI think I explained myself pretty clearly, and why the use of the word as a clinical identifier is, in my opinion, both different and dangerous. Not sure what else to tell you.
ReplyDelete(Also, when someone begins a comment with "I find it so interesting that you...", I know three things before I even read any further. It's going to be anonymous, it's going to be passive-aggressive, and it's another of those things I should just let go without comment. And yet? I always do.)
ReplyDeleteI really did just find it interesting- sorry it came across with other connotations. You just speak so strongly about language, for one and against the other, that I'm having trouble grasping what should be a dramatic difference. I'll try to re-read for clarification. Maybe it's because you know it would be a BS diagnosis for your kid? Your daughter may have some particular deficits which you already know, but she does not have mental retardation. MR would be a misdiagnosis and that could lead to the misinterpretation and negativity that you fear- but I can see how it could be accurate and helpful for another kid. I appreciate your writings and didnt mean to offend. Im in the trenches too.
ReplyDeleteSounds like I misinterpreted your comment. My apologies.
ReplyDeleteMR is that feeling that just b/c your child doesn't talk, or talks poorly/minimally (in my case), that school's can give up... "Well he can't do that b/c the dx reads MR". I have been fighting that idea too and so far have proven to them that a child with severe ASD can be taught and can learn academics.
ReplyDeleteBroken is the acknowledgement that something is wrong. That we need to work to improve the situation. Some would claim it's anti-acceptance... I think ignoring the fact there's something wrong, claiming it's "OK"... does more harm than good in the long run.
Apology accepted, Im just trying to get it. The last post... well, I agree that there are clinicians out there that do not evaluate special needs kids properly. Who would give a common IQ test like the WISC to a nonverbal kid? And yet, I know it happens. Who diagnoses a kid based on an IQ test alone and not adaptive functioning? It still happens. Folks with autism especially have been known to surprise us with their abilities. However, MR does exist and thats OK, yes OK! Some people need special help to learn basic skills and live independently and we have resources available for them. We can try our best to protect our folks with disabilities from stigma and lowered expectations- but sad to say, no matter the diagnosis or the "name" we use, there will still be people out there who will be doubtful and pessimistic. They can jump to conclusions just by looking at your kid! It sucks because some of these same people are supposed to be helping... and you start to wonder about their motivations.
ReplyDeleteOne day I'll probably have to allow MR as part of the "adult" diagnosis for the younger, for "adult" care and employment opportunities but IMO there is no need for it as a child.
ReplyDeleteThere is appropriate psychometry testing where a year ago (Gr 4) my eldest was dx'd with short term memory issues, he has mild NLD. His IQ test was lower than the academic testing that was done during the testing and noted in the document. A follow up speech and language assessment flagged it as mostly oral recall and the school has accommodated his learning accordingly. This is a child that at 2.5 was dx'd with non-verbal mild PDD and we were told to pretty much "write him off" by the "should have been retired by now" Dev Ped. This is a child that is disgustingly "normal" and who's difficulties are mostly LD's - which now we know what they are - and accommodated in the classroom. A dx of MR in the beginning... and a parent that had given up... he'd been a lot farther behind.
The little one is having his done in a month. The psychometrist knows I'm not interested in IQ testing.. he's barely 8 and learning quickly all the time... We want "how does he learn" done once more. His IEP is Modified to address his poor verbal skills and lower language comprehension but he's still being taught in a regular classroom.
A dx of MR at this time/in the beginning will/would have never change their IEP's... but it may have decreased their teacher's classroom expectations of them... and that would be wrong.
Now... as an adult... eldest will be "fine"... but little boy... we'll worry about it then...