Will Killing The Words Retarded and Autistic Help?

I just read a great post on the blog Postcards from the edge of the Spectrum titled
Taking Back The R-Word. In it the author says that by using the term “r-word” when we’re asking folks not to use the word “retarded”, we’re lessening the power of our protests. We should feel free to say, “Please don’t use the word retarded. It’s thoughtless.” (Forgive my paraphrasing here. To get the author’s full message, please read the post.)

I agree with the author. I also think that using the term “r-word” makes us sound like a bunch of prissy second-grade girls. It’s as if we’re afraid of the word retarded or that if we say it, I don’t know, our heads will explode or our mothers will come wash our mouths out with soap. It’s just a word. Furthermore, I think our crusade against the word retarded is a waste of time that while it might make us feel better about ourselves, will ultimately do little to help people with disabilities.

Now before you start on the argument that words have power (which is true) or start writing me hate mail about what a callous, unfeeling, horrible person I am (which is almost completely untrue), hear me out.

Instead of telling people to “quit using the r-word”, or to “stop using the word retarded”, how about we tell them “quit making fun of disabled people”? I mean, that is our point, right? We want them to stop thinking that disabled people are “less than.” We want them to treat people with disabilities with respect instead of using them as the butt of a joke or an insult. It’s people’s attitudes that we want to change. Changing their vocabulary without changing their attitude is pointless. What ground have we gained if instead of someone insulting their friend by saying “What are you, retarded?” they say “What are you, disabled?” What do we do then? Tell everyone to stop using the word “disabled” and we’ll tell them the next right word to use – until the jerks claim that word for their own, too? That is how it works, historically – check out the progression of politically correct terms for minority groups over time. Today’s politically correct terms will be considered insulting in a decade or two. Changing society’s vocabulary does nothing unless we change people’s attitudes as well.

This isn’t just a rhetorical argument for me. In my immediate family (myself, my hubby and my kids), we are all disabled. Literally. I have the parking placards to prove it. So, this is an argument that affects our lives. When I look at what I want for my children (let alone for myself and my sweetie), I find that I don’t really care what words people use to describe my kids. I care how they treat them. If they’re being nice, I appreciate it. If they’re rude, disrespectful or insulting, I don’t. Period. End of discussion.

This argument about vocabulary extends to the world of autism as well. There’s a huge debate over calling someone “autistic” or “a person with autism.” People are arguing about how the words used affect the identity of people with autism. It’s more than a debate – in some quarters it’s an absolute war. Parents and autistics are in a knock-down drag out. (Teachers are kind of caught in the middle – doing their jobs and waiting until the dust settles to they can figure out what terms to use so they don’t offend anyone.) Take a few minutes to Google “person first language” and you can see the conflicting blog posts and flame wars for yourself. This is an issue that a lot of people are seriously upset about.

For the most part, I don’t care about this argument. (My son is old enough that I remember the days when almost no one knew the word autistic at all, and we parents were thankful to meet someone who did. We were delighted to hear autistic instead of “rotten, little brat.”) My attitude is “pick a term, any term, and let me get on with my job.” But this conflict over vocabulary is actually harming our kids. I saw an example the other day on-line. A parent was posting on a message board and said “The teacher seemed wonderful and I loved the program they were offering my child. But then the teacher referred to my child as autistic. I was horrified. There is no way I’m going to leave my child in the care of such a prejudiced person.” So instead of taking the great program with the wonderful teacher, that parent pulled her child from the class and went looking for another program. I hope she found one just as good with a teacher who could correctly guess which term would offend the mother least.

A lot of people are putting a lot of time and energy into changing our society’s vocabulary. They are working hard to improve the lives of people and I applaud their effort and compassion. I just hope they know that changing the words people use, while it can be a step in changing society, is not in itself enough. Changing our vocabulary without changing our attitudes is like putting up new wallpaper on rotten walls. It might look better, but in reality, the problems are all still there, lurking under the surface.

– Cassie
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Will Killing The Words Retarded And Autistic Help?

I just read a great post on the blog Postcards from the edge of the Spectrum titled Taking Back The R-Word.  In it the author says that by using the term “r-word” when we’re asking folks not to use the word “retarded”, we’re lessening the power of our protests.  We should feel free to say, “Please don’t use the word retarded.  It’s thoughtless.”  (Forgive my paraphrasing here.  To get the author’s full message, please read the post.)

I agree with the author.  I also think that using the term “r-word” makes us sound like a bunch of prissy second-grade girls.  It’s as if we’re afraid of the word retarded or that if we say it, I don’t know, our heads will explode or our mothers will come wash our mouths out with soap.  It’s just a word.  Furthermore, I think our crusade against the word retarded is a waste of time that while it might make us feel better about ourselves, will ultimately do little to help people with disabilities.

Now before you start on the argument that words have power (which is true) or start writing me hate mail about what a callous, unfeeling, horrible person I am (which is almost completely untrue), hear me out.

Instead of telling people to “quit using the r-word”, or to “stop using the word retarded”, how about we tell them “quit making fun of disabled people”?  I mean, that is our point, right?  We want them to stop thinking that disabled people are “less than.”  We want them to treat people with disabilities with respect instead of using them as the butt of a joke or an insult.  It’s people’s attitudes that we want to change.  Changing their vocabulary without changing their attitude is pointless.  What ground have we gained if instead of someone insulting their friend by saying “What are you, retarded?” they say “What are you, disabled?”  What do we do then?  Tell everyone to stop using the word “disabled” and we’ll tell them the next right word to use – until the jerks claim that word for their own, too?  That is how it works, historically – check out the progression of politically correct terms for minority groups over time.  Today’s politically correct terms will be considered insulting in a decade or two.  Changing society’s vocabulary does nothing unless we change people’s attitudes as well.

This isn’t just a rhetorical argument for me.  In my immediate family (myself, my hubby and my kids), we are all disabled.  Literally.  I have the parking placards to prove it.  So, this is an argument that affects our lives.  When I look at what I want for my children (let alone for myself and my sweetie), I find that I don’t really care what words people use to describe my kids.  I care how they treat them.  If they’re being nice, I appreciate it.  If they’re rude, disrespectful or insulting, I don’t.  Period.  End of discussion.

This argument about vocabulary extends to the world of autism as well.  There’s a huge debate over calling someone “autistic” or “a person with autism.”  People are arguing about how the words used affect the identity of people with autism.  It’s more than a debate – in some quarters it’s an absolute war.  Parents and autistics are in a knock-down drag out.  (Teachers are kind of caught in the middle – doing their jobs and waiting until the dust settles to they can figure out what terms to use so they don’t offend anyone.)  Take a few minutes to Google “person first language” and you can see the conflicting blog posts and flame wars for yourself.  This is an issue that a lot of people are seriously upset about.

For the most part, I don’t care about this argument.  (My son is old enough that I remember the days when almost no one knew the word autistic at all, and we parents were thankful to meet someone who did.  We were delighted to hear autistic instead of “rotten, little brat.”)  My attitude is “pick a term, any term, and let me get on with my job.”  But this conflict over vocabulary is actually harming our kids.  I saw an example the other day on-line.  A parent was posting on a message board and said “The teacher seemed wonderful and I loved the program they were offering my child.  But then the teacher referred to my child as autistic.  I was horrified.  There is no way I’m going to leave my child in the care of such a prejudiced person.”  So instead of taking the great program with the wonderful teacher, that parent pulled her child from the class and went looking for another program.  I hope she found one just as good with a teacher who could correctly guess which term would offend the mother least.

A lot of people are putting a lot of time and energy into changing our society’s vocabulary.  They are working hard to improve the lives of people and I applaud their effort and compassion.  I just hope they know that changing the words people use, while it can be a step in changing society, is not in itself enough.  Changing our vocabulary without changing our attitudes is like putting up new wallpaper on rotten walls.  It might look better, but in reality, the problems are all still there, lurking under the surface.

– Cassie

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The February Dive

Just a word of caution: the grades of kids on the spectrum (and other kids with organizational difficulties) tend to dip this time of year.

During the first few months of school, we are focused on getting a good start to the new year – students, teachers and parents alike.  We’re all on the lookout for difficulties.  Teachers know they’re going to have to help students adapt to their new classroom.  The kids are doing their best to live up to the new expectations placed on them, from social demands, to learning how their classroom works, keeping their work organized and turning it in on time, and keeping their cool as best they can.  Parents are on top of homework and schoolwork, are working with teachers to solve problems, and are trying to keep everyone’s emotions in check, including their own.  All parties involved are on their toes, trying to make this school year work.

For most kids things tend to calm down a bit over the next few months.  They learn the ropes in the new classroom and come up with some strategies to help them survive the worst of the day.  Parents and teachers have adapted school and family life where they can and have established some sort of working relationship, (some work better than others.)  Homework routines are in place, parents and teachers are monitoring them diligently, and things kind of pull together.

Then the holidays arrive.  Suddenly, all the adults have a lot of things other than the kids to think about.  There are holiday programs, gifts to buy, cookies to bake, parties to arrange, decorations to be plastered over classrooms and homes, and holiday vacations to arrange.  School is still a priority – older kids have finals to take, and teachers are still trying to cram in as much learning as they can, but there’s a lot of pressure and stress on the adults who are trying to do everything they normally do plus the holidays, too.  It’s hard on them and their brains tend to melt a little around this time. 

Fortunately, winter break arrives.  Parents and teachers can ignore school for awhile and concentrate on the rest of their lives.  Kids are cut loose.  They may have family commitments they have to meet, but for the most part the adults are so busy that the kids get a lot of free time.  They get to relax, put in a few too many hours on video games, and do what they want for a change.  Life is good.

The holidays come and go.  The adults, exhausted by the demands of the holidays, crash into a heap of exhaustion.  They are tired.  Most of the women go into a brief coma.  The men enjoy the peace and quiet.  Again, the kids are getting a lot of free time and they’re okay with that.

Unfortunately, all good things come to an end and winter break does, too.  Teachers go back to work.  Parents peel their kids off the front of their computer and TV screens and throw them on the school bus.  The adults are ready for life to get back to normal.  The kids, however, are not.

Going back to school in January is not like starting a new school year in the fall.  The kids have had enough time off to get out of the school routine, but not enough time away from the classroom to build up that “new school year” energy.  It’s only been two weeks.  They still remember that school means a lot of work.  They know that extra video game time is ending and a bunch of drudgery is beginning.  Even the most dedicated kids can be a bit slow moving when it comes to school work in January.  They may not get all their homework turned in.  They may not study for tests as much.  This is a time of year when our kids aren’t at their best organization-wise, and it shows.  Their grades start to dip.

Parents and teachers don’t always catch the downslide.  They’re often not monitoring the kids quite so closely this time of year.  Things were going well in the fall and the kid didn’t need extra oversight then, so they assume he doesn’t need it now either.  It’s not until progress reports come out in February that everyone realizes there’s a problem.  Junior’s (or Junioress’) grades have taken a bit of a tumble.

If you’re like most mothers, this is when your guilt goes into overdrive.  You stand there, looking at your child’s progress report, and realize that you’re the worst parent in the whole world.  You’ve ignored your child and this is the result.  All his carefully nurtured organizational skills and homework routines are in shambles and it’s all your fault because you didn’t love him enough to monitor his homework as carefully as you should have.  He would be looking at a life of flipping burgers except since his social skills aren’t that great and he can’t handle noise, he won’t be able to hold even that job, so as a result he will starve to death. 

(Note that I said “like most mothers”.  From what I can gather, fathers just thump the kid on the back of the head and tell him to do his darn work, then come up with ways to make sure he does.  They seem to move from recognizing there’s a problem to coming up with a solution without spending near as much time in the “Oh my God, I’ve ruined my child!” stage as we mothers do.  There’s a lesson for us there, moms.)

February is often no fun.  We figure out that our kid needs help getting back on track and we knuckle down to it.  We spend March (and sometimes a lot of spring break) getting him caught up with school work, and the rest of the school year getting his grades pulled back up to acceptable levels.  Our guilt gets worn back down to normal levels (to where we think our child may just succeed in life even though he was blessed with a totally incompetent parent) and we make a final dash for the finish line and summer vacation.

Here’s a tip, from someone who’s been through this cycle many, many times.  Even if your child did really well last November and December, check his homework for the next month or so.  Make sure he’s writing down all his assignments and actually turning them in.  If he got to the point last fall that he didn’t needed your help studying for tests, double check his knowledge anyway.  It’s worth the twenty minutes it takes to run through his spelling words or to ask him questions from his study guide.  If you’ve got any doubts on how he’s performing at school, drop a note or make a visit to his teacher.  The effort it takes to help him get a strong start back to school in January is a lot less than the time, energy and tears you’d both spend getting his grades back up after they plummet. 

It might also free up some of your Spring Break, too.  That way you’ll have more time to nag your child to quit spending so many hours glued to video games, and enough room on your brain circuits to handle most moms’ other big worry that time of the year.  Yup, the dreaded “oh-my-goodness, bathing-suit-season-is-right-around-the-corner-and-I-haven’t-exercised-in-the-last-six-months” guilt.  Sorry, I’ve got no good ideas on how to help us all through that one. 

– Cassie

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Rights and Wrongs

As parents of kids with autism, we spend a lot of time talking about our children’s rights.   “It’s my son’s right to a free and appropriate education.”  “It’s my daughter’s right to be fully included in a general education class.”  “Be sure you get a lawyer so the school doesn’t trample your child’s rights.”  Search the internet for the words “autism” and “rights” and you’ll be flooded with results.  We spend a lot of bandwidth learning about our children’s rights and how to protect them, as we should.  But why do we rarely hear parents of autistic children talk about the rights of kids who don’t have disabilities?

For instance, I’ve heard parents say, “My child has difficulties with auditory processing, so he needs assistive technology.”  But I’ve never heard, “My child screams so much in the classroom that the other students can’t hear the teacher and it’s affecting their education.”

Frequently parents tell me, “The school needs to implement a behavior plan so my child learns how to use his words instead of hitting.”  Only twice have I heard, “How can we stop my child from hitting other kids?  They shouldn’t be afraid to come to school.”

I’ve heard, “The teacher isn’t helping my child enough,” but not, “If my child is taking up 35% of the teacher’s time, how are the other children getting the attention they need?”

I’ve even seen, “My child has special needs.  She should be on the cheerleading squad even if she isn’t as good as the other girls.”  I don’t think that mom ever thought, “There are only six cheerleaders at our school.  If I insist my daughter is on the team, is she depriving another girl who deserves to be there because of her abilities?”

Note that I’m not talking about when the other kids in a classroom have to suffer inconveniences so that our children can be there.  Not being able to take a peanut butter sandwich to school because another child might die is not a huge sacrifice.  No one has the right to put someone’s life in danger just because their parents can’t figure out something else to put in their lunchbox.  If a child disrupts the classroom occasionally or the disruptions are mild and manageable, the rest of the students can learn to ignore it and move on.  No, what I’m talking about is when the accommodation of our children means other kids are harmed.

The rights of individuals with disabilities are precious, necessary and just as unalienable as those of people without disabilities.  We fought long and hard to ensure that those with special needs have as equal access to the benefits of our society as we can provide.  If we parents don’t defend the rights of our disabled children, our children will lose out.  

But should other people’s children be made to suffer so that our children benefit?  Are children with disabilities the only ones who have rights?  Is one six year old less of a person than another?  

Parents of typical children are expanding their viewpoints and insisting that all children are important, valuable and to be protected, even those with disabilities.  Surely, we parents of kids with special needs can do the same.

– Cassie

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