Archive for the 'testing and labels' Category

Labels, Labels, Labels

February 23, 2013

a picture of two blank labels

image courtesy of Allspire via flickr.com

We live in a world of labels. The wrong one can be devastating, but a good label can get across a complicated idea, make it easier to understand and talk about. Here are some of the labels I think about all the time.

Cerebral Palsy

Although it sounds fancy, this label is not a medical term or a diagnosis. Chloe’s official diagnosis is “static encephalopathy with spastic quadriplegia and athetosis.” Which means she has a brain injury that affects her muscles, and a simple way of saying that is cerebral palsy. I say sa-REE-bral, but some people say SER-bral. I can’t figure out if this is a regional thing or what.

Disabled

Our go-to word. Disabled can be seen as problematic for its negative quality (not-able), and yeah, some conditions could be more accurately described as differently abled rather than not abled. But I think in Chloe’s case, it is both accurate and useful. Let’s face it, Chloe is unable to walk. And when we’re faced with stairs or mud or snow or a bumpy field, it’s a pretty big hindrance.

Disabled often gets replaced with terrible euphemisms, because people who are uncomfortable with disability try to hide it behind sentimental or vague terms. This is especially true when it comes to kids. The worst one I’ve heard is extra-exceptional. As in “I just love working with extra-exceptional kids!” When a therapist said that to me, I had to fight the dual urges to laugh in her face and walk out of the room. I won’t have a grammar-geek fest over how ridiculous it is to modify the word exceptional with an adverb like extra, but if you would like to do that, here is the definition of exceptional. 

Special Needs

A euphemism for disabled. Not as bad as extra-exceptional, but like that term, special needs has an element of compensatory sentimentality, which makes it sound patronizing. Special needs and its cousin, special ed, get used pejoratively all the time. Once, another mom in a therapy waiting room woman told me that she homeschools her two children (both on the autism spectrum) because “special ed teachers are usually special ed themselves.” She probably didn’t realize that with her obnoxious insult to teachers, she was also insulting her own kids.

Kathy Snow of disabiltiyisnatural.com doesn’t like this term, pointing out that the “special” needs of people with disabilities are just variations on the tools that we all need to make it through life. Which is a good point. And disability is natural, not special, and it should be seen that way. However, when your kid is the only one in her the school who uses a wheelchair and can’t speak, her needs are pretty damn special for the people who have to meet them.

Handicapped

Totally out of style these days, but, after looking up its history on a very entertaining Snopes.com article, I now have a special place in my heart for the word handicapped. Forget about the whole “handicapped came from a time when disabled people had to beg in the streets” myth. Basically, the horse-racing version of this word is the original: as Snopes puts it, the word has always been “a term for leveling out the field by making the stronger contestant bear a penalty.” So I would be proud to call Chloe handicapped, since it implies that without her physical limitations, she’d be too awesome for this world.

Also, is it just me or is handicapped parking still the only thing that sounds right? I sometimes try to say disabled parking, but it sounds so awkward.

Typical

When Chloe was a baby, I realized I needed a new label in my life—a term to describe other people’s kids, the ones that weren’t disabled. As in, “you don’t understand because your kid is…” I came up with regular, which I kind of liked because it implies a boring, everyday quality. But that does that mean Chloe is irregular? Like the cheap clothes you get at TJ Maxx? Then I discovered what other people use, and it’s perfect: typical.

I love this word, because its opposite, atypical, is not an insult. Atypical is not abnormal or irregular; it’s interesting, even refreshing for those of us who enjoy variety in life.  And although typical is not a negative word, you can say it with a tone of scorn that’s really satisfying when you’re feeling resentful. “Your seven-year-old just read all the Harry Potter books in her spare time between soccer and gymnastics? Typical.

Mentally retarded

This one is still used as a diagnosis, though that is changing as it gets a reputation as “the R word.” It will hopefully soon be completely replaced with “intellectual disability” so that the medical diagnosis will no longer share a term with a stupid insult. But the problem with retarded is not inherent in the word. Before we had retarded, we had idiot and moron, both words that began as descriptions of a disability and turned into pejoratives. This happens because we live in a world where people whose brains function differently are not usually respected and valued. And as long as this is the case, suggesting that someone is anything other than neuro-typical will continue to be an insult. But, luckily, it should be a little more difficult for middle school kids to use the term “intellectually disabled” when referring to someone they don’t like.

I suspect this label is overused. For example, I don’t think Chloe has an intellectual disability, but she’s probably been labeled that. People are quick to generalize about abilities and disabilities. Chloe can’t speak, a very specific physical disability. Which means she can’t tell you what she’s thinking. Which means that many people assume the answer to “what is she thinking?” is “not very much.” How many other people labeled intellectually disabled actually have very specific disabilities (physical, sensory, expressive) that hide their intellectual abilities from the world?

An intellectual disability isn’t a devastating thing–people with this type of disability can have happy and productive lives. But being mislabeled this way is like being strapped into a wheelchair you don’t actually need.

No one should be reduced to a single word. Chloe is much more than disabled, much more than a kid with CP. But when I need to explain what is exceptional and atypical about our lives, I need these labels. I choose them carefully and probably overthink them sometimes, but they get the job done.

Severe

March 10, 2012

picture of a tornado siren

image courtesy of wonder_al via flickr.com

“Pretty much all kids with disabilities are in mainstream classes these days,” a special ed teacher said to me once. “Well, except for the severe ones, of course.”

She had never seen my daughter. A different special ed teacher took one look at her and said “She’ll be in my self-contained class one of these days. I teach all the severe kids.”

What makes Chloe severe? It’s hard to pin down, but I think mainly it’s her difficulty communicating. The fact that she can’t talk or type. The fact that, in order to take part in a mainstream classroom, she would need a lot of support from thoughtful and creative professionals.

And that’s exactly what she has. Chloe is doing great in second grade (her third year as part of a regular class). She does the same homework, takes the same tests, gets exposed to the same learning opportunities as the other kids. She even had a speaking part in the school musical, with the help of a recorded message and a large button.

So while our school district tends to judge kids like my daughter pretty quickly, to assign her to the self-contained classroom at a glance, I’m happy to report that it didn’t take much to dismantle these assumptions. All the people we worked with were very open to trying something new, to giving my daughter a chance, even though she is “severe.”

So in the end, what does that word even mean?

Cognition, part III

August 20, 2010

In the last two posts, I’ve briefly explored the ways people try to evaluate intelligence, and suggested that the term “intelligence” itself is rather vague.  But what does it all mean?  Because you can ponder the nature of intelligence all you want, but the fact remains that some people need a little extra help with things like reading, math, communication, etc.  I guess my take on it is that, instead of lumping all these people into a group and feeling sorry for them, we should look more specifically at what kind of help they need, without judging their overall “intelligence.”  Labels like “asperger’s syndrome,” “perceptual disability,” or “expressive communication delay,” can be useful when they help an individual and her community understand and come to terms with the nature of her challenges.

More importantly, though, what does all this mean for me?  Because this is, after all, all about me.  As far as I can tell, my child has little trouble learning, reading, or remembering, but she does have trouble expressing what she knows because of physical constraints.  In addition to this, her limited motor skills have probably led to gaps in what she knows.  After all, she can’t ask questions or physically explore her environment, two of the ways that children learn.  If she doesn’t understand how a swing works, because she has never been on one, or if she doesn’t know what a can of soda contains, because she’s never drunk from one, does that mean she should be labelled with an intellectual disability?  That doesn’t seem right, but these experiential deficits could count against her on an intelligence test.

I used to tell myself that Chloe’s intelligence level didn’t matter.  Aside from the fact that I couldn’t exactly figure out what anyone meant by “intelligence,” there was the question of what she would be able to do with her intelligence.  What good are reading and math skills when a person can’t hold a book, or control a computer mouse?  I know there are adaptive devices out there, believe me, I know, but we haven’t yet found anything that allows Chloe to do these things independantly.  And if she must always rely on someone else, if she must always keep her thoughts to herself, does it really matter how interesting and complex those thoughts are?  It matters to her, of course, but for anyone else, it’s a secret, an unsolved mystery.  The most I could do, I figured, was try to keep exposing her to stimulating and challenging ideas, hoping to help her have a satisfying mental life, at least on the inside.

These days, however, Chloe is not keeping her thoughts to herself so much.  The more she is able to communicate, with her “talker,” with hand signals, with facial expressions and even words, the more she wants to tell us.  She can get across opinions on clothes, books, and activities, and, like I said at the beginning of this series of posts, she is able to choose between two cards and ace spelling tests.  If her motor skills continue to improve like this, we’ll be able to see more and more of what she knows, and fill in more and more of what she doesn’t know.  And we might uncover some learning problems, or perceptual difficulties.  But more importantly, I think we’ll discover, over and over again, that Chloe is a bright and fascinating little girl.

Cognition part II

August 18, 2010

In the previous post, I wrote about the superficial clues people often rely on when judging intelligence, and what happens when intelligent people have disabilities that keep them from displaying intelligence.   I don’t want to suggest, however, that everyone with a motor disorder is a Stephen Hawking waiting to be discovered.  Conditions that cause motor disabilities can sometimes, but not always, cause other types of disabilities.  Many children with CP, for example, are also diagnosed with intellectual disabilities, or, in some unfortunate cases, mental retardation.

But what does this mean, exactly?  The term mental retardation, which suggests a general quality of “lagging behind” mentally, is currently going out of style, being replaced by intellectual disability.  (If anyone had asked me, I would have voted for “cognitive disability”, because intellectual disability sounds like someone who is hampered by their obsession with tweed suits and the New Yorker, but whatever.)  But what is an intellectual disability?

The American Association on Intellectual and Developmental Disabilities defines an intellectual disability as either an IQ under 70 or lack of adaptive skills.  I’ll let you explore the IQ test controversy on your own, but adaptive skills refer to things like reading, carrying on conversations, dressing yourself, and buying groceries.  The problem is that any of these adaptive behaviors can be affected by language and cultural barriers, motor problems, and other disabilities.  Autism, which affects interpersonal skills, dyslexia, which affects reading ability, and Tourette’s syndrome, which causes uncontrollable tics, can all be mistaken for intellectual disabilities, when in fact these conditions do not always involve a low IQ, and are even sometimes associated with high IQs.  In his books, Oliver Sacks describes many perceptual and memory problems that could come across as failures of intelligence (such as the man who actually did mistake his wife for a hat), but that truth is that the brain is so complicated, and it can shine and stumble in so many different ways, that the closer you look, the more amorphous this thing called intelligence seems.

Cognition

August 17, 2010

Chloe knows all her spelling words. This is a huge breakthrough. Last year, even though I (and her teachers and therapists) suspected that she knew her letters, numbers, etc, she didn’t have the motor skills she needed to prove us right. This year, thanks to a small improvement in her hand and arm coordination, she can grab a piece of paper with the correct spelling word on it, and presto, she is officially intelligent.

People with disabilities often have the peculiar challenge of proving that they are as smart as anyone else. Think about it: when you first meet someone, you don’t usually wonder if they can understand what you are saying to them. But if that person uses a wheelchair, carries a white cane, or simply looks significantly different from you, admit it–the question crosses your mind. People who work with Chloe often tell me “she’s smarter than you would think at first.” Instead of being offended at the implications of this, I choose to be grateful that Chloe has the skills to show people her intelligence.

We judge intelligence from subtle and superficial clues: physical appearance, eye contact, clothing choices, speech quality. And some people with disabilities, no matter how intelligent they are, have little or no control over these things. Chloe cannot speak, but luckily, she can partially make up for this through facial expressions; when she makes eye contact, smiles, laughs or frowns, people know she is paying attention.

I realized how much facial expressions convey when I met a four year old kid in Chloe’s preschool class whose facial muscles were less mobile. His expression is common for kids with CP: mouth slightly open, eyes gazing into the distance, head tilted dreamily. You might think there was as little activity in his mind as there was on his face, until he told you about his favorite country band or baseball team, or read you a book.

Given these examples, it’s not hard to imagine a child who is as intelligent as Chloe or her classmate, yet lacks control over both his face and his voice. This is the kid who gets labelled “stuck at the level of a six-month-old” by doctors and declared “not really in there” by relatives. His parents give up trying to communicate with him, and, self-fulfilling-prophecy style, they treat him like a baby for the rest of his life. No matter what interesting thoughts are tumbling around inside his head, he is condemned by lack of evidence, guilty until proven innocent.

To be continued…

5 things doctors won’t tell you about your special needs child

May 1, 2010

  1. Doctors and therapists are experts in their fields, not in your child. Your neurologist is an expert in brains, and your occupational therapist is an expert in fine motor skills.  Sometimes, they don’t know much about your kid’s condition in general, and on top of that, most of their training centers around typical brains, fine motor skills, etc.  They have important insights into one specific part of your child, but that’s it.  In some rare cases, there are doctors or therapists who specialize in one condition, like Janice Brunstrom, who knows a heck of a lot about CP.  But good luck finding one of these gems, and getting your insurance to pay!
  2. Therapies are like religions, and you should be a pantheist. Therapists, especially those who advocate an intensive, “outside the box” approach, will often expect you to follow their advice 24/7.  But no therapist is an expert on your kid (see number 1), and often, their advice is based on their own opinions and theories, not hard scientific evidence.  You might try one of these for a while, but if you don’t think it’s working, move on.  You don’t need a therapy guru; sometimes the best plan is to take the best pieces from a lot of different therapies and leave the rest.
  3. Equipment won’t solve your problems unless you have the support you need to choose and use it correctly. Do you have an expensive communication device or activity chair in your closet?  How about a wheelchair that doesn’t support your child correctly, but you use it because Medicaid won’t pay for a new one for two more years?  Join the club.  The most important thing about a piece of equipment is the support and advice you get with it.  Make sure your providers and therapists know their stuff before you waste your money.   If they don’t, find people who do.
  4. Everything has risks and benefits, and every choice has a downside. Everything you do for your child, whether it’s getting a baclofen pump or choosing an inclusive public school setting over a private therapy school, will deny your child something, but it will also give her opportunities she wouldn’t otherwise have.  It’s not about finding the perfect solution, it’s about weighing the wins against the losses.
  5. “Normal” is not the right goal for you child, or any child for that matter. Are you sacrificing therapy time with the AC device because oral speaking seems more “normal”?  Are you wearing out yourself and your child with potty training because you hate the thought of a seven year old in diapers?  You need to accept that the rules are different for your child.  As painful and problematic as it may seem now, some goals are not worth the effort.  Concentrate on what your child can accomplish, and find ways to make his life happier and safer.  Forget about “normal.”  It’s overrated.
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