"...although it would be delightful, it is not possible for the culture to make up for the society." - Fran Lebowitz

I was watching Real Time with Bill Maher, tonight and almost turned it off because Seth McFarlane was going to be on.  Though, I agree with him often politically, the seemingly bottomless well of ignorance and hate he spews towards the intellectually disabled is hard to ignore.  As my worldview has been colored by Down syndrome for 18 years, it’s hard to get past.

Long story short, I stayed for Fran Lebowitz.

The quote that is the title of this little diatribe is one that she spoke in response to a question about the Oscars being “too white”.  She didn’t say much during the show, but that quote, "...although it would be delightful, it is not possible for the culture to make up for the society.", was a gem.

And I agree.  

It would be nice if having more black Oscar winners meant racial tolerance, but it doesn’t, in the same way that having a kid with Down syndrome crowned prom king does nothing in the grand scheme of things for kids with i/d that are more often than not, excluded.

I can see people who think Betsy DeVos is going to be a dandy Secretary of Education screaming “Well, what more do you want?!?!???  I mean, HE. WAS. PROM. KING.  Forget that there are hundreds of hours in the school year where he is separated from the “typical” population.  Forget that he is in danger of losing even the shitty supports that are in place at the moment.  Forget that people fear the unknown, and in too many schools, kids with Down syndrome are not known as friends and peers, still, today.

I have some very lovely snapshots of my son and a couple of “typical” kids.  If I posted those pictures without comment, you would think that these are his close friends.  They are not.

He spends hours texting and calling and leaving barely intelligible messages on their voicemails, and rarely, very rarely does he ever get a call or text back.  About once a month, one of these boys comes over for a half and hour or an hour at most.  He NEVER gets invited to their house.  It is heartbreaking to have your kid tell you about a party that he wasn’t invited to, or who is sleeping over whose house.  He wants it so badly to be him.  He wants SO BADLY to be one of the guys.  

I’m not bashing the kids.  They are good kids.  They are nice to my kid and have fun with him when they are here.  I honestly think they don’t mean to exclude him.  They just don’t think to INCLUDE him.  They don’t see him as an equal, and that is the most heartbreaking part.

I don’t expect the world to be color or gender or orientation or disability blind.  Not seeing differences is impossible and dishonest.  Not seeing those who are different than you as peers, is a tragedy.  Before we can have equality, we must see each other for the equals we are.

I am pulling for La La Land, but have not seen Hidden Figures, yet.  I guess I need to get on that this weekend.

The Spiral

I would like to share a whiny Facebook status with you...my status, before you ask...

"I seriously feel like everyone else's kids fit in fine in public school ( I know this is not true, but having kids that don't feels very lonely at times ) and I wonder what the heck am I doing wrong? Why do I fight against a system that clearly doesn't get them and that only wants to make them conform? It is a day-to-day struggle and I don't have any answers except to keep moving forward."

Venting has it's place and Facebook seems to be it.

I got what I was looking for from this status; many sweet comments, lots of commiserating, a couple of words of wisdom.  

If I have learned anything in my forty-four years, it is that usually, when I feel the worst about things, I am about to turn a corner.  Not always, but most of the time.  

We have turned a corner, at least, I think we have.

I am a proponent of inclusion; that is, by my own definition, full participation in life for all people.  

When I am talking about school, especially for my middle son, Charles, who has Down syndrome, inclusion means being at his home school, not the school five miles away that has the "services" he needs.  No, thanks.  My kid does not need "servicing", he needs educating alongside his peers.

I was reading some terse responses that I had received from emails to Charles' teachers, while trying to figure out how things were going.  Terse doesn't work well in an email, especially when you have a super-sensitive mom on the other end reading it in annoyed teacher-voice.  Words like "needs prompting" feel like tiny little paper cuts on your eyeballs.  Everything said and mostly, left unsaid, makes me question my purpose.  Every.  Freaking.  Time.

So, the howling self-doubt cyclone grabs me out of my seat and spins me towards the ceiling and sucks me into the self-pity vortex.  After hyperventilating myself into a mini coma and falling asleep on the couch, I arrived at the next morning's meeting looking every bit the insane, inclusion terrorist that my kid's teachers think I am.  My husband and I await the pronouncement...

And they say something good.

They say something nice.

They are starting to get why I do what I do.

They see MY KID and not the problems my kid imposes on them.

They are smiling.

For real.

They are talking about next year and what they are putting into place.

(on their own!!!)

They tell me (without telling me) that I was right.

That inclusive math class is working.

He is making friends in that gym class.

The students are embracing him, as I knew they would.

It's not all roses and fairy dust.  As I signed in, I saw my boy down the hall.  As he turned the corner, the girls standing there smirked and giggled, looking at his retreating back.  He is the smallest kid in the hall.  Maybe they are giggling at his cuteness?  Maybe they are noticing his cool cap?  It's doubtful.  He doesn't see them and I am grateful.

I have heard the argument that inclusion does not work for everyone.  I say they are wrong; but hear me out.

There are trade-offs.  My kid is probably not learning as much about his subjects as he could in a smaller classroom.  He is not getting as much educational support as he probably needs.  He is mostly isolated, not physically, but socially from most everyone else.  It is NOT perfect.

My husband and I have chosen VISIBILITY over academics for our middle son.  We have decided that it is more important for him to be seen by his peers than to get A's and B's.  We see it as a literal life and death struggle for Charles.  What will his life be after school if the kid's in his home school have never experienced a person with Down syndrome?  How will they treat him?  Will they want to work side by side with him?  Hire him?  Or, will he always be "that guy with Down syndrome?" or worse, "that retard"?

I grew up in the 70's and 80's.  The encounters I had with people who looked or talked or acted "different" were few and far between and NONE of them left me feeling compassionate.  My reactions were usually fright and disgust.  I am ashamed to say this, now.  I feared these people because they were not my peers.  They were "others" and "freaks".  They did not belong in my every day life because they were not IN my every day life.  I can't help but think that if I had had more exposure to the world of difference that my life could have been shaped in a more positive way earlier on; but that is not how it happened.  It happened because 16 years ago I found out that my second child would be born with Down syndrome and a major heart defect.  The news broke me apart at first, but quickly, I learned that it had broken me open.  This was MY child.  Nothing was going to change that.  I want the best for him, the same as I want the best for my other two boys.

So, we fight for him to be a full participant in his own life.  We fight to keep him at his home school with his brothers and where his neighbors can see him as just another kid.   I don't think this is a pie in the sky fantasy.  I have already seen changes in these short, sixteen years.  My kid was the first kid with Down syndrome to be fully included at our home school for kindergarten.  He is the first to be included at his high school.  We pushed a little, got a little lucky, and maybe, just maybe, the timing was right.  

Inclusion IS for everyone.  We have learned that separate but equal is anything but.  That doesn't mean it works in every case; not yet.  There are far, far too many school districts that are stuck in the 70's.  I have many, fierce mama bear friends who have decided that the struggle for inclusion for their kid was causing more harm than good.  The timing is not right for them and they are doing their best with what they have.  You do what you've got to do.  In conversation with these mom's, they kind of wait for me to be judgmental of their decision to NOT pursue inclusion and that makes me feel awful; because God knows that they have been judged and judged and judged again.

I don't think I am anything special and I tell them that.  I tell them about luck and timing and willingness.  Our schools were willing (with some prodding) to include my son.  If I thought for a second that the struggle was causing him undue stress, or harm, I would pull him out.  I like to say that "I would never martyr my kid on the altar of inclusion".  I'm not sure if I made that one up, or read it somewhere, but I have been saying it for awhile and it perfectly sums up my feelings.  Unlike Rosa Parks, my kid is not choosing to take a stand; I am choosing for him.  I have to be careful to weigh his feelings and his best interests and include him in the process along the way.  As he has gotten older, he is more involved and anytime I ask him about which school he feels more comfortable in, his home school wins every time.

Things are not perfect.   That's life.  We often take two steps back for every one forward; but we are learning and growing and helping to pave the way for all the children that come after mine to have an easier journey.

I look forward to a future in which everyone knows and has grown up with individuals like my Charles and it is no big deal because of that.  It's not about not seeing difference, it's about seeing it and embracing it, because it is a part of life.

IEP Hell: The Neverending Headache

If you have been following along with the saga of my middle son's IEP's, you will know that we have had our ups and downs.  Mostly, luckily, thankfully, our experience with these meetings has been positive.  Until last year, with the start of his transition to high school, we never really had any kind of problem that we could not solve.

I am feeling that those days are behind us.  Even after a somewhat positive resolution to our last meeting before this school year started link here , we find ourselves baffled by school officials' lack of understanding of what inclusion looks like.

For instance, it does not look like a modified gym class for kids who are recovering from injuries.  Seriously, it does not.  

Charles is not injured.  Down syndrome is NOT a reason to be left out of a typical gym class.  In fact, Charles has ALWAYS been included in a typical gym class...until this year.  They decided (unbeknownst to me) that it would be better (their word was safer) to put Charles in a class where three or four other kids were getting therapy for injuries, rather than with the "general population". I am using that term with no irony whatsoever.

The gym teacher, who, all in all, seems like a very nice person who is trying to get a handle on how to include and teach Charles, is completely overwhelmed by this task.  I am not exactly sure why, but lack of understanding about what Down syndrome is and isn't seems to be a big piece of it.

I really didn't know what to say in the moment, because to me, it seems like a no-brainer that you would just assume he can do stuff until you see that he can't and then modify from there.  In the case of gym, the only modifications Charles needs are the ones that address his AAI What? and those are minor.  He can run, shoot hoops, play games, do bench press...pretty much everything that gym entails.  Can we just for a second assume that he can do stuff before we decide (with no evidence other than ***whispering*** psst, he has Down syndrome ) that he can't?

The problem "they" say is that Charles once left the gym without permission and they are worried that it would be hard to watch him in a large group setting, such as a regular gym class.  I get the need for safety, but let's break it down a bit.  He left this gym class/therapy and went to the next class on his schedule; most likely because he was TOTALLY BORED!  Who wants to sit around watching other people get therapy?  Further, they decided this BEFORE he started school! They had it in their heads that he could not handle the larger class and put him in this poor excuse for a gym class instead, without consulting me (I would have laughed at them) or even trying out the regular class first.  

Seriously?  

So, I told them that we needed to get him into a regular class, like YESTERDAY and they brought out the standard, tired argument of who was going to "watch" him, since, you know, they are so understaffed and the district won't give them another aide and yada, yada, yada...

I'm sorry, what?  

I pay taxes and ridiculous school fees for this "free" education and my kid will get what he needs; and if you put him in a class that actually has activities to keep him engaged, I am pretty sure that he won't feel the need to wander off to the math lab for some excitement.  Besides, my kid is LEGALLY entitled to receive a free, public education in the least restrictive environment; in this case, the high school that his brothers also attend, five blocks from our house.  This is not special treatment.  It is legally protected and socially just inclusion.

His case manager actually started complaining that there were so many kids "like mine" coming down the pike that they didn't know how they were going to handle it. And I said (trying to restrain myself from rolling my eyeballs out of my head) "Yes, you had better believe they are all coming!"  The insinuation was that "we" were the problem.  We.  Us pesky parents and our stupid kids.  

Are you freaking kidding me?!?!  These creative, bright individuals can't think of a way to revamp the system to accommodate children AT THEIR HOME SCHOOLS IN REGULAR CLASSES?!?!?  How about take 75% of the teachers and aides in the segregated classes and put them in the others?  Co-teaching?  Extra hands?  Spending less money busing kids to other schools also means more money for extra teachers.  For the other 25%, we can have some smaller classes for those kids that really, really need it and even those could go away in time, in my opinion.  We are finding out that our kids learn better together.  ALL our kids learn better together; no matter where they are on the continuum. Read This, this, and this.  

I am SO TIRED of having to educate the educators.  I am tired of getting beaten down to the point where I feel like my only choices are to pull him out altogether or leave him to rot in "life skills".

I have more to say, but right now, I am just so freaking tired.

Processing...

When most people see the word processing, they most likely think of what a computer does.  It transforms information into readable text, pictures, kitty cat memes, etc.  It processes computer jibberish into a medium that our brain recognizes, quickly.

What I want to talk about is the way people interpret information.  Specifically, how me and my youngest son see and hear things.

When I was a child, before I began school, I was a genius.  I read whole books way before I entered Kindergarten.  I had a grasp of the English language that probably rivaled that of an average ten or twelve year old when I was five and my use of sarcasm and humor made adults weep with glee.

It was universally accepted (okay, my mom WAS my universe when I was five) that I would get straight A's all through my school years, that I would graduate from Princeton and become a successful brain surgeon/astrophysicist, or at the very least, a writer that used correct grammar.

It didn't turn out that way; far from it, in fact.

By the time I hit second grade, I was already "not working up to my potential".  I fidgeted.  I lost my homework.  I didn't DO my homework.  My desk and bookbag were overflowing with crap and my mother and my teacher were both shaking their heads (at best) and screaming (at worst) at me over my laziness.

"If you would only APPLY yourself!"

If I had a nickel for every time I heard that throughout my school years, I'd at least have a couple, two, t'ree bucks.

I carried on believing that I had just been a lazy student until I had my own children and I started seeing my struggles in theirs; especially, in my youngest son's.

Like me, he talked and read very early.  My mom often recounts a story of E, sitting on her lap, at about eighteen months old, reading her Scrabble letters out loud while we played.  He was and is a very bright boy.

Within the first few months of Kindergarten, we realized that he was having trouble, though.  It turns out, this trouble had a name:  Processing Disorder.

There are three basic types of processing disorders:  Auditory, Visual and Sensory.  Sound, Sight and Touch/Feel or Tactile.

E and I both have trouble with the way we interpret what we read.  Often, our brains are on the next paragraph, while our eyes are still on the one before.  It leads to confusion.

We are also not very good at following spoken directions, which is part of the reason for my doing so poorly in school, when nearly every class relied on lots of talking by the teacher and lots of note taking by the students.  I would invariably get lost at some point, quit trying to figure out what I was supposed to be writing and would start daydreaming and doodling.

When the time came to turn in the homework that was assigned during the drone, I would usually have missed it, taking the parking break off the steamroller at the top of the hill of crap that was my missed assignments.

In classes that I had a good grasp of:  History or English, I could usually make it up and get by; but math, especially Algebra, was another story.  If I missed one thing, I was lost for days and weeks, often never to get back on top of things.  It didn't help that my Algebra teacher was the same one for three years in a row and that she was a psychotic, polyester pantsuit wearing, drunk.  I was afraid to approach her for help and when I did, she repeated the tired old line about being lazy and not applying myself, instead of understanding that I was having trouble.  Needless to say, I didn't ask for her help very often, except under threat of bodily harm or house arrest carried out by my mother.

I was grounded for approximately 742 days of my high school career.

So, when I got an email from my youngest's teacher about some writing assignments he had missed, I responded quickly that I would talk to him about it and we would get things straightened out as soon as possible.  Only, I read it wrong...

And mixed up the assignments she was talking about...

And confused the whole situation further...

And had to ask her for more time, because I had made things worse...

And it hit me that as much as I have learned to compensate for my struggles with processing, it is a lifelong challenge.

I have to remind myself to slow down, to re-read, to clarify things that I am not quite sure about.

And sometimes, I forget.

And I think of all the times that I have felt totally lost, when it seemed everyone around me knew what they were doing, even now, still, today.

When everyone else brings the paperwork to the meeting and is on time; I wonder why it is so hard for me.  Why am I such a scatterbrain?

And I look at my kid's desk and backpack and have a flashback of my own.

And I feel for my kid.

And I am thankful that I "get" it.  

And I hope I can help him.

And I think that he will probably always struggle, as I have.  

And then, the ray of light:  I have a life.  I have held on to jobs.  I have made something of myself, though it is miles short of the goals I have set.  I have SURVIVED.

He will, too.

IEP's, Meltdowns and Being the Very Best Jerk I Can Be

So, we had an IEP planned for yesterday that didn't happen.  It was -20 degrees here and school was cancelled, but the meeting was called off last Friday for reasons I can best describe as vague.

I get it.  Things happen.  Meetings get cancelled.  Life goes on.

If it hadn't been the most important meeting in my kid's school life, I probably would have been fine with the change of plans. But, it is the most important meeting in my kid's life, so I freaked out a little bit.  I may have called the coordinator a few times.  I may have left a shaky voiced message on her voicemail.  Did you ever get so angry you were actually shaking?  Yes.  That.

Anyway, this was supposed to be a high school placement meeting for my kid.  It had been planned for months.  I was anticipating it with equal parts dread and excitement.  Dread, because I was pretty certain that their offerings were not going to be exactly what we wanted and we would probably be gearing up for a fight.  Excitement because, hey!  It's not every day that your kid starts high school! 

So, you can see why pushing it off (for three months!  What?!?!?) would not make me happy.  Now, I have more time to perseverate on the whole business; ponder the endless unknowns; fight to keep the devil on my right shoulder and the Polyanna angel on my left from throttling each other.  

Now, I've had a couple of days to digest the whole business and I decided that I would write a letter to Chooch's team, outlining the way I want his high school career to look; ideas that I have been thinking about since, oh...1999. 

and here it is:

Dear Team, 

This is my son, Charles.  We are here to find the best possible placement for him.  Before we do that, however, I want to remind you that he is not just a set of strengths and weaknesses.  He is a teenager, a much-loved son and brother, a good friend and a bundle of wit and sarcasm.  

He wants what all of us want out of life:  To love and be loved, to have friends and to be included.  That last part is tricky, because it can't really be quantified.  I am afraid that sometimes, the human being gets lost in the graphs and percentiles.  I am afraid that for some, my Charles is a challenge at best and a problem at worst.

Numbers are not my son's best friend, whether they are problems on a math work sheet, IQ points or figures on a percentile chart.  I realize that teaching involves testing and reporting, but I urge you all to look beyond that towards what really makes a life:  Being accepted and included.

Inclusion is not a pie in the sky fantasy, it is the only way to ensure that my child's life is seen as having as much value as those of his typical peers.  If you think I am exaggerating, consider what happens when people are segregated from society.  

Times have changed for people with Down syndrome, but until stories of prom kings and queens and team managers are more than feel good anecdotes, people like my son will not be fully participating members of society and that is what I want for my son.  My husband and I want full participation in life (not just school) for Charles and every child who comes after him.

I look forward to the day Charles walks across the stage in his cap and gown, ready to accept his certificate and to step into a world that is more accepting and inclusive than it is today, because of the work of teams like this.

Thank you.

Why the R-Word Sucks with guest blogger, Nidhip Mehta

This post is a culmination of spending years trying to convey my feelings.  You can read this year's r-word campaign posts here and here.  I have written at least 427 other posts on the subject over the last 14+ years, but I will spare you those.  This latest post came from hearing about Kat Von D and her lipstick line at Sephora.  Long story short, they collectively decided that naming a lipstick "Celebutard" was a hilarious idea.  

Celebutard - from the Urban Dictionary:  

A famous stupid person. Typically refers to the current crop of vapid celebrities.

Similar, but not exactly the same as Celebutante: 

A person of high society and wealth whose famous just for the fact of being rich and fabulous. A socialite who is "famous for being famous."

It seems that no one spotted the irony of a tattoo artist who is famous for having a reality show and for sleeping with Sandra Bullock's ex calling anyone out for being vapid, or famous for being famous.  But, whatever. You can read more about that here.  

Once the disability community got wind of it, it took about 24 hours of tweeting, sharing and public shaming to get Sephora to stop selling the offensively named shade.  It was a victory, but a hollow one.  I am glad that as a community we were able to mobilize and have our voices heard.  I am troubled by the fact that it's a battle we have to keep waging.  

Here's another great post from a friend, here.

In the midst of the fracas, a good friend of mine, Nidhip, decided to play Devil's advocate.  He posed a few, well thought out questions asking why the r-word is so offensive.  He got quite an eye/ear full from me on the subject. We had a little back and forth with no real resolution, just a lot of anger, hurt and frustration on my side.  Again, I was getting nowhere and with someone who liked me and actually cared about my feelings!  How was I ever going to get the point across to anyone else?  

I went to bed fuming and in the morning I realized that getting upset was getting me exactly nowhere.  To top it all off, I was going to quite possibly lose an old friend in the process.  I did a little soul searching and then I wrote a note to Nidhip that said:  

Hey. good morning! First of all, thanks for getting me so riled up last night, it made me really think about things. Second, sorry about telling you to get off your high horse. I have an equally tall one and don't like to have it pointed out to me. Anyway, I was thinking that this conversation is a good one. I want people to understand where I am coming from, but it is very hard if you are not in the same situation. It's frustrating, to say the least. From the outside, you might see it as a debate over a word (which, in the scheme of things, seems inconsequential) but for me and many others, it's a fight for inclusion, for dignity, for justice and for civil and human rights. The word merely is a reminder of how far we still need to go in these areas.

I'd really like to write some more about it. I know I won't convince everyone, or maybe even you, but I would like to try and engage in healthy debate. As you can tell, debate is not easy for me. Arguing is fine if I don't truly care about the answer, but when I do...oh boy. I am all emotion. I know logically that a word should not hold so much weight, but emotionally, it does, it really does.

I'd like to try and work through this some more. Would you be okay with me putting your questions in a blog post and answering them? Or would you want to write something different? Or go back and forth? I think it could be a really good thing. If you don't want to add anymore, I understand, but if you would allow me to use your questions, I'd be grateful. Think about it.

And being the good guy that he is, he said this:

Hey, first of all, I just want to say I'm sorry again. I know with hindsight, you're thanking me, but I really should've gauged the situation better before opening up something which clearly has an emotional resonance. You're right, I tried to intellectualize something which, at its heart, is emotional. But I honestly think that it helps to do that when you're trying to create awareness or change minds. Which is why I was getting at you for simply saying that it shouldn't happen because it makes people angry. As you know, progressive thinkers like us do a lot of things that make other people angry, but that shouldn't stop us from doing it. Like wanting that anybody can marry anybody else, regardless of what the Bible says. That sure makes a ton of people angry, but I'm gonna go on wanting it.

Anyway, like I said last night, my questions came from a point of inquiry, not argument. I genuinely wanted to hear your point of view and well... I got it, I guess.

Sure, I'd be okay with my questions in your blog... after all, that was my point in bringing it up... to initiate discussion. But I really don't want to get anyone upset, let alone you. You are a great person and I admire you a great deal, but I want to respect your limits and tolerance as well.

And thanks for reaching out to me this morning. I really felt bad about upsetting you and regretted bringing it up. I admire that you're willing to put that aside and engage me again. That says a lot about you.

So, here is Nidhip's query. I will break it into parts in order to address different pieces of the issue; but first, here it is in it's entirety:

Ok, so my question is essentially this:

I sympathize with the feeling of being offended by a word or phrase. Ever since I learned that the R-word is offensive to some (particularly to those who have family members that are intellectually disabled), I stopped using it. I don't even use it when those people are not around, and I try to remind others when they use it. Also, I understand the negative connotation when the word is used to describe someone with Downs Syndrome or autism spectrum. It's really not appropriate, and it's not such a big thing to simply use another word.

What I don't completely understand is when the word is used outside of that context; when the intent has been changed from the original meaning. This happens in language. It happened with the words "moron" or "idiot" or "stupid", which were all used at one point as clinical descriptions of people with intellectual disabilities. These days, no one bats an eye or hesitates to use these words. Heck, even people who have family or friends with intellectual disabilities use these words, which a century ago had the same meaning and connotation as the R-word.

Is it not possible to divorce the word from its meaning? Can the perception of those who use the word be more nuanced? Shouldn't there be a distinction between those who use the word offensively and those who do not mean offense?

I'm not exactly saying that people should simply ignore it when people use the R-word, but that perhaps they should react in accordance with the intent in which the word was used, and not simply react from pure emotion.

I also think that in order to make people better understand why they should not use the R-word, the reason given should be more than "it makes me angry" or "you'll never understand unless it happens to you". I think these don't help the cause, primarily because unless the person involved is a friend or relative, no one really cares whether something they say makes some anonymous person angry. I believe in many things that make people angry, like feeling that gays should be able to marry or that all people should have access to affordable (or free) health care. The fact that this makes some people angry does not bother me in the least; it's a fundamental disagreement. So, I guess that in order to better understand the issue, I'd prefer to see a more intellectual rationalization for not using the word, as opposed to an emotional one.

Of course, what I prefer doesn't always matter. There may not be, after all, an intellectual rationalization. Maybe it should suffice that enough people (whatever that critical mass is) find it offensive. But the intellectual part of me wants to know where to draw the line, because it seems very fuzzy and, to be honest, hypocritical. Especially when I see the words "moron" and "stupid" being used all the time. I don't know, perhaps it simply has to do with the amount time that passes for a word to fully change its meaning. It's difficult to parse, unfortunately.

Again, I want to reiterate that if the word offends people who I like and admire and want to stay friends with, that's good enough for me. But it may not be good enough for everyone.

My response: 

I think there are essentially three parts to this:

1. Is it not possible to divorce the word from its meaning, in the way idiot and moron have lost their original clinical meanings?
2. Shouldn't there be a distinction between those who use the word offensively and those who do not mean offense?
3. Is there a way to intellectually rationalize why it is wrong?

Is it not possible to divorce the word from its meaning, in the way idiot and moron have lost their original clinical meanings?

First, some people are bothered by the words idiot and moron and imbecile because of their historical significance to people with intellectual disabilities. For myself, I feel that those words have evolved to a point that when someone says any one of them, a picture of a kid like mine does not pop into their heads. I haven't seen any offensive memes using a picture of a kid with Down syndrome and the word "idiot"; but I have seen plenty with the word "retard". That makes them different, as far as I'm concerned. Maybe it's the role of social media that makes this word different (for me) from the rest. It certainly plays a part.

Secondly, I don't wish to drag up every old word used in reference to people with i/d. I feel they have run their course, history has moved on and so should we. The difference with "retard" is that it IS in common use these days and because of that, it keeps anyone who could be called "retarded" by a doctor (even though it is going away in the medical field) apart from everyone else. It makes them the "other", not like us, not worth worrying about offending, maybe, not even quite human.

Thirdly, though I could wait for this word to become innocuous, I don't want to. I want to stand up now and say that it matters to me and it matters to my family and many, many families like mine.  Why should my kid, who has been called a retard more times than I can count, have to hear that word in any form (including added "tard" to the end of other words)?  

Shouldn't there be a distinction between those who use the word offensively and those who do not mean offense?
Why should the offender (even if it was not meant to offend) get away with impunity?  I see it as a matter of simple humanity.  Most people don't want to hurt people's feelings, even people they don't know.  I think educating those who truly don't realize that their words are hurtful is important.  It's not about getting angry (Nidhip:  you seem to only see my anger and not my hurt.  I'm wondering why?), though I do get angry about it.  When someone uses the word "retard" and I am in earshot, more often than not, I use it as a teachable moment.  I avoid calling people out in public unless they are being blatantly disrespectful, but I typically pull them aside later on and say something to the effect of "this is a hurtful word, I know you didn't mean it to be, but it is" and nine times out of ten, they are apologetic.  Some (many) still use the word, but at least I have planted the seed.  If they hear my voice in their heads the next time they say it, it might not feel as satisfying and hopefully, they will re-think it.

The reason I brought up being hurt versus being angry is that it is much easier (I think) to dismiss anger than it is to dismiss hurt.  People get angry for all sorts of reasons (as Nidhip brought up) that I don't agree with.  Frankly, I think much of their anger is misplaced.  But hurt?  I don't want to hurt people or be hurt.  Knowing that the r-word can be hurtful should be enough.

While there is a difference between being deliberately hurtful (Hey, Retard!) and being unintentionally hurtful (That's so retarded!), the word still hurts.  It is associated with being bad, stupid, ugly and foolish AND it may be a part of a doctor's report; therefore making it a part of a person with a diagnosis.  Would you want any part of what makes you YOU be a slur? 

Is there a way to intellectually rationalize why it is wrong?

I've said that to disability advocates, this is the N-word. Do we use the N-word in any form?  No.  Because most reasonable people get that any form of it is degrading and wrong.  They wouldn't dream of saying "oh my god, you are such a nigger" to a friend who's acting silly.  But, "you're such a retard"  is fine.  Why?  What is the difference?  

The only difference I see is that blacks have had (and in many cases, still need) their civil rights movement, while the civil rights movement for the disabled is still in it's infancy.  You would be horrified if a school refused to accept a child because they were black today; but every day, schools refuse to accept children who learn differently, many without even giving them the chance to show that they can adapt in a mainstream classroom.

This happens today.  

Yes, kids with i/d learn differently than other kids.  And typical kids learn differently from each other.  With creativity, love and support, everyone wins and everyone learns more.  There is no excuse to leave some kids behind for any reason, whether it is sex (in some parts of the world, girls are still under-educated), race (hello?  American south in the 1960's?), or ability (today, all over the world).

My intellectual rationalization would be that the r-word keeps people with intellectual disabilities separate from the rest of society the same way the n-word kept black people separated from society.  Both words say "you are different, you are not worthy, you are not accepted".  If you look at the history of the civil rights movement, you will see that many of the things that were done to black people are still being done to those with developmental disabilities.  The only real difference is that not many have yet noticed that the disabled, as a group, are calling for their rights as human beings to be recognized.  Like African American, women and gay people before them, people with disabilities are calling for equal treatment.  Eliminating slurs against them must be a part of that movement.

Sexual Olympics(?!), Life, Love and Living with these Weirdos.

This blog title is in honor of an epic autocorrect.  The words the poster meant to type were "Special Olympics" and instead got "sexual Olympics" and did not realize it until 47 comments were posted under it.  Ooops.

Anyway...

I have been "dealing" with Down syndrome for more than fourteen years.  I use the term dealing because, good or bad, it is something that needs to be dealt with, from people's attitudes, to medical issues, to school, to looking towards the future; it all needs to be dealt within the context of how Down syndrome does or does not affect all these things. Confusing?  Yes, it is.

It's a complicated journey, but, so is life.  I try and remind people of this when they think having a kid with Down syndrome is any harder than having a kid without it.  It's not harder, really, most of the time it's just life.  I really don't know any better.  

My oldest was born six weeks early.  He didn't have any issues, other than jaundice, but he had to stay in the hospital for a few days after I was released.  At the time (17 years ago) I felt a little sorry for myself that I had to leave my baby behind, pump breast milk for his feedings and schlep back and forth to the hospital.  In the scheme of things, I now realize that this was a small thing in comparison to what others go through, but at the time, as a young, new mom, it felt monumental.

After those first few trying and jaundiced weeks, our baby thrived and became, to us, the most brilliant and adorable child ever conceived.  

When I was pregnant with my Charles, my oldest was a sweet and precocious two year old.  Sometime in those nine months that I was waiting for Charles, we noticed a change in his (OS's) behavior.  He started obsessing over bathrooms and bathroom fixtures.  Maybe this was really not that strange, since he was on the verge of potty training, but it was more than interest.  He was manic about it.  He HAD to explore every bathroom, every place we went. More than once, I had to drag him out of someones shower. 

He also became worried about people leaving and had to say goodbye, four, five, twenty seven times before they actually walked out the door.  Then, he would say "I have to blow you kisses!" and it sounds cute, but he would be seriously panicking and would go ballistic if you did not return the required number of kisses to him.  It was exhausting to watch and worrisome, of course, because here I was, thinking I had the perfect child, pregnant with the next child (and I had no idea what was in store with this one, yet) and here he was acting all weird!  I just kept thinking "what the hell?".  I spent every day with him.  I rarely left him, even in the hands of his capable and loving dad and I can count on one hand the number of times we had babysitters when he was little.  

He had no reason to fear me leaving, he saw his dad every day for several hours before bed, we had a consistent routine, his nap times and bedtimes were strictly observed.  I felt like we were doing everything right and I struggled with his irrational behaviors.  If I had just realized back then that those behaviors were perfectly rational for a kid on the autism spectrum, I may have worried less.  

Once we had some answers for him, it became easier to manage, but it would be almost four years, many doctors appointments and IEP's before we'd get a "maybe it could be Asperger's" diagnosis.  Oh, the subtle nuances of neurological spectrum.  Sigh.  In the meantime, OS had been kicked out of first grade for kicking and threatening another classmate and spitting at his teacher.  Huge Freaking Sigh.  

We were still in the early stages of this struggle with OS when we got the news that Charles, our second boy, would be born with Down syndrome.  Actually, this news came in stages.  And all the stages were scary.  The first stage was the news that he had a serious heart condition; a complete A.V. Canal defect.  Imagine a heart with two big chambers instead of four and that's basically what it means.  So, heart surgery was in this baby's future, for sure.  

What wasn't sure at first was whether or not he had Down syndrome.  They suspected he did, but we wouldn't know unless we had an amniocentesis.  

A few weeks later, we had those results and Trisomy 21 it was.  

At this point, we already knew that we were having a boy and we had already named him Charles.  He was ours.  This little bundle of broken heart pieces was on his way and we had to prepare.

I'm not going to say that it was all rainbows and unicorns.  

No.  There were plenty of tears shed.  There was plenty of extra worry now that OS was having issues AND we were having a baby that was going to need extra love and attention.

I think we had one pretty rotten weekend, maybe a few days more than that, but not much.  One day, a few days after the news, we went out to lunch.  We were sitting down to eat when in walks a couple with their son.  He looked to be a teenager and he had Down syndrome.  My husband and I looked at each other and we both knew it would be okay.  They looked so normal.  They didn't look depressed or angry or unhappy.  They just looked like a happy family.  That was all we wanted to be.

I don't think I cried about the diagnosis after that.  Sure, I worried.  I especially worried about his heart, because that all seemed so scary.  Looking back on it all these years later, I wish I could tell myself not to be scared, that someday, that unborn kid would be a silly, strong, John Cena and Michael Jackson imitating ball of energy.  That he would make us laugh.  That he would have friends.  That we would be happy.  Not happy in spite of Charles having Down syndrome, or OS having Autism; just happy because we are a family and we love each other.

After all the craziness that surrounded us in those early day with Charles and pretty much the day after I finally zipped up my pre-pregnancy jeans, we got another surprise in the form of a positive pregnancy test.  Baby number three was due eleven months after Charles' birthday.

Again, I was scared.  Scared to go through all of that (while it was still very fresh in my mind!) again.  Scared of being broke.  Scared of not being able to give any of my kids the attention they needed.  Scared of having to get a minivan!  And yet, here we are 14 years later, with three teen aged sons, the youngest of which is my Charles' best friend and champion.  He is his buddy, his occasional interpreter, his roommate and his school peer.  I can't imagine a better little (much taller) brother for Charles than E.

I guess what I am trying to get at (in a really rambly and incomprehensible way), is that we have our challenges.  My kids are not the easy, drop them off at school and don't worry about it, kind of kids.  My kids all have Individualized Education Plans (IEP's).  My oldest and youngest are both on the Autism spectrum and have very different issues.  It makes life interesting.  Sometimes, it makes life harder, but only on the bad days.  

Who doesn't have those?  

We are as "normal" a family as any other, especially if normal means making big weekend breakfasts, driving to see relatives every summer, going to sporting events and concerts, watching movies, arguing and laughing, then we are a typical bunch.  I've often said that the only real difference I can see between my family and others is that our lows might be lower, but our highs are higher.  They just are.  It all balances out in the end.

Here it is.  It's life with kids.  You take the good with the bad, the weird with the wonderful.  Down syndrome or Autism doesn't change what makes being a family, a family; how could it?

The Brassica Project

It sounds like a Cold War era thriller or some End of Days movie.  It isn't.

No, the Brassica Project is something so hideous, so unspeakably nightmarish that if it were a movie, it would be Saw 7.  Was there a Saw 7 already?  Well, whatever Saw comes next.

It started innocently enough.  A school project for science.  Yay!  This will be fun!  We get to do it together!  Over Spring Break!  

Wait.  What?  You have to complete a science project over Spring Break?  Uh, okay...less fun, but, WEGETTODOITTOGETHER!  What a great time to bond over Elmer's glue and...

Wait...

Oh, there's a list of items we need to buy?

And we can only use these very specific items?

But, Brassica at least comes in lots of colors, so we can pick that, right?

No.  


It's not that Brassica is ugly.  Okay, for a flower, it's kind of ugly. Yellow is not my favorite but, whatever.

The first time I had to help with this project, it was for my oldest son.  The lessons I learned the first go round were: 

1. Children should never be left unsupervised with paint:  Ever.
2. When paint dries, the dowel you so carefully painted sticks to the newspaper that you put down to protect the table.
3. I would rather sell my soul to the Devil himself than ever, ever undertake this gluey, horrific nightmare again.

After buying three different colors of pipe cleaners, wooden dowels, two colors of some eco-nightmarish foam, paint and a terracotta pot to put it in, I was down two hours of my life and $25.

And, just as an aside, what is the deal with learning about plants by building a replica?  Can't we just grow one?  Wouldn't that be 
smarter/easier/more meaningful/less wasteful/greener?

And the fun hadn't even begun, yet.

Turns out that this Beelzebub foam does not stick very easily.  And the wooden dowels need to dry over night before gluing them into place...which then, also needs to dry overnight.

Overall, we spent 5-6 hours on this ugly, useless project; all for a smiley face sticker and a place on the shelf with the other 27 identical, crappy looking "flowers".

WHAT THE HELL?!?!???

I tried to block it from my memory and it worked until the last day of school when B brought it home.  

Really?  Now I have to display this?  Where is my jar of tonsils?  I want to put them on the same shelf. Pretty sure that procedure was less painful and no less attractive.

After a few months, I was able to remove this atrocity from view, under the guise of "saving" it (in the garbage can) for the future.  

I almost forgot about it.  I had been drifting blissfully through the school years when, I saw it:  The instruction sheet for another Brassica project.  NOOO!  Dear God, NO!!!  WHYOHWHYOHWHY?!?!?!???

We managed to live through that one as well, but barely.

Our two youngest are so close in age that they are in the same grade at school.  When my middle son didn't receive this project the same year as the youngest, I thought we were in the clear.  

But then...

Like an antelope munching unawares, I was pounced upon by another sheet of instructions.

This time, I flat out refused.  I voiced my concerns to the teacher.  I told her where to go what I thought of this insane project.

In the end, I relented, but only because I liked this teacher so much in every other respect and because the class was such a small size that having C's ugly flower missing would have been pretty obvious.

Three boys.  Three nearly identical wood and foam and pipe cleaner flower models.  They seem to have managed to escape mostly unscathed, but I still have nightmares about it.  I wake up screaming "Wait!  The glue hasn't dried!  The petals are falling off!", before I realize that I will never, ever again need to undertake another Brassica project.