Sometimes

Sometimes, I...just don't want to.

You know how you see things? Links, perhaps, and they're just everywhere and something rebellious within you just tells you to keep moving? Not now, maybe later. If ever.

Just me, then?

I kept seeing this video posted on Facebook, but I just couldn't bring myself to deal with the topic. Again.

Until tonight.

I watched.

And I bawled.

So now you have to watch it, too.

Or not, you rebel.

But it's here.

Just in case.



And even though she misspells the word, you still get the message, right?

Goings On

You know, I seem to dip in and out of this space a lot lately, but, truthfully, it's summer. And I don't want to look back and say that we didn't live it up when we had the chance, y'know?

So we've been doing just that. And so I'm behind on my emails and phone calls and posts. But that's what winter's for, right?

Know that I won't quit you though, k? I mean, even at the times that I start to think that this blogging this doesn't really mean anything to anyone but me, I get confirmation that what I write matters to someone. Even if it's just one, it's one. And that means a lot to me. So here I am.

There's been quite the activity in the Ds community lately.

First, and most importantly, there was the NDSC Conference in San Antonio, TX, last week. I can't say enough about it. Where else can you spend 4-5 days in a resort setting and hang with a bunch of people that just get it? And then you eat, dance, laugh, cry, learn, speak, and listen. It's pretty awesome.

This was our third time attending. We went to Sacramento and Orlando and it would take something massive to keep us away from DC next July. So get your bags ready and start setting aside your allowance, y'all. It's worth it.

We didn't take a camera, but thankfully others did. I'll either share some pictures here soon or provide a link to where you can see them. Playette was quite the poser so she made it into lots of shots.

Oh! While we were there, we had the chance to go to Morgan's Wonderland and I'm so, so glad that we did. A theme park that utilizes inclusive practices? Bonus.

I loved seeing our friends and friends that have become like family. The only thing that blew was that it didn't last longer. But it gave me hope and the strength to continue to fight the good fight.

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Good thing, huh, cause in the midst of all of that warm-fuzziness, there came word of the whole The Change-Up controversy.

I've said it before and I'll say it again...just because you can be a jerk doesn't mean that you should be.

If it's "just words" then why is it so hard to make the switch? It's a matter of respect. And if you can't respect my kid, I can't respect you.

That's the nicest, most concise way I can put it.

If your friends, family members, or co-workers still don't get it, fell free to forward them this.

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And then there's this story.

Um. Well.

You may be surprised at my reaction, but I don't think he should play.

To me, that's the definition of treating him special-special.

I'm not a fan of special-special.

One thing I learned from the conference session on inclusive practices is that we can't have it both ways. We can't want for our kids to be treated just like everyone else and then not want them to be treated just like everyone else when it doesn't feel good.

Inclusion, to me, means that everyone is together and supports are provided when necessary. In my mind, it's not that we get the best of all possible outcomes at all times.

I admit, my kid is four. I have a long way to go and my thought process is certainly skewed by my limited experience in the land of Special Needs Parentdom.

I also admit that I don't always take road less traveled. Some days are hard enough as it is and I welcome a break. Any break.

So when someone offers Playette a special pass for free admission to the zoo, I will probably accept on her behalf. See? I'm not perfect. Perhaps that even makes me a little hypocritical.

But I'm not going to be mad at the zoo if we go and they don't offer Playette a free ticket. Because no one else gets free tickets. Does that make sense to anyone but me?

Help is nice, sure. But it's not a given.

So I guess if they had decided that Brett couldn't suit up, but could still do some stuff with the team (which it sounds like may now be the case), then I guess I could be convinced to be ok with that. But I don't like our kids treated like mascots. And I don't think that they should be allowed to break rules courtesy of the extra chromo.

When I was a kid and used to say, "That's not fair!" one of my parents would always reply, "Life's not fair."

Maybe that's why I'm cold-hearted. Or a realist. Or whatever.

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But back to the happy-happy-joy-joy! Washington, DC. July 20-22. Come early or stay late. Just be there.

We'd love to see you.

More on Spreading the Word

Tim Shriver, Chairman and CEO of Special Olympics, was on The Colbert Report yesterday, asking Stephen Colbert to lead an anti-R-word campaign.

Check out the interview here.

It was funny to me, but I get it. I wonder if people that aren't emotionally invested already came away with the intended purpose.

A great quote from the interview:

"I didn't say you cannot use the [r] word: I don't want to be a cop; I want to be a teacher. You're allowed to be humiliating, degrading, and hurtful. I'm allowed to petition you to at least recognize what you...say and be aware of the option you have to stop...I'm asking you for...social awareness for a forgotten population."

Many thanks to the friend that brought this to my attention. Good looking out!

Oh no - not you, too!

I wrote the following post over a month ago. I've gone back and forth about publishing it.

Something I realized yesterday, though, is that I'm still bothered by what happened. I'm still very hurt when people use the word "retarded" or "TARD" or whatever version they choose that inadvertently hurts people that cannot control their cognitive abilities and the many people that love them.

I'm even more hurt when it's people that I like or admire. And what is the appropriate response when it's a special education preschool teacher that does it?

Oh, God, this fight. Today, and days when I feel like this, which are much fewer and farther between, I wonder if I'm cut out for it, if I'm strong enough.

So on this day, the one set aside to attempt to get people to think more about their word choices, I'm publishing.

And sighing.

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The "brief" IEP meeting went well, overall. We were rolling around KeepItQuickVille, making a slight detour onto OhIMeantToAsk Lane, just about to easy into the driveway of Maison de NoSurprises when it happened.

She said it.

I cringe even before writing it out because I know what it is.

Lemme fist tell you this. I know some people want to go all "get a thicker skin" on me and I have to say...somewhere along the way, I have.

I had a friend in high school who called me an Agressive Cottonball. He said that I could dish it with the best of them but I couldn't take it.

I probably pouted when he said that.

Because I'm sensitive.

In case that wasn't clear.

He was right though. When I was coming up, (and forgive me for not knowing the new terminology that surely exists amongst the whippersnappers) jonin' (uh, who knows how to spell that anyway?) was huge. We made fun of each other for fun. Someone noticed that you were wearing your friend's jeans? Having a bad hair day? Sporting ugly glasses past their prime?

All easy targets.

But let someone say something about me. I may have put on a semi-tough exterior (i.e. not burst out crying on the spot), but it festered internally for...well, forever.

Obviously. Because all of those things were said about me and I still remember them vividly. Plus a whole lot more.

I would love that brain space back, thankyouverymuch.

The truth is, though, that I'm ok about a lot of things now that I just plain wouldn't have been years ago, whether we're taking 15 years or just the few since Playette has been in my life.

I still strongly believe that you shouldn't hurt people by using words that are painful to them. But I don't have the same reaction that I used to and I'm not sure how to feel about that.

I don't get as sad as I used to. It's not even anger, really. It's more like disappointment. Deep disappointment that I feel the need to shake off as quickly as possible. I can't wallow in it...forever. I refuse to.

You know why? And I think this is sad, too.

I won't do it because, MY GOD, she's three.

It's not stopping.

So, yeah, I'll still stand up for my rights and those of others. I maintain to fight the good fight, but I'm putting a protective coating on this here cottonball personality of mine, little by little, for the sake of my own sanity.

That said, I got disappointed yesterday.

It was in that very IEP meeting.

Right at the end.

I may have even begun to gather my belongings.

We were pulling into the driveway, after all. There had been no surprises, no arguements, no losses of control or emergence of expletives. What more could you ask for?

Well, I could have asked for my daughter's very kind and considerate and generally likeable teacher not to use the "r" word.

Stab me in the gut, why don'tcha.

And, like I said, it wasn't the same kind of pain I've felt before. It was different this time.

It was more of a "Dammit, not you, too. I thought I was safe with you. I didn't have my defenses up because we're supposed to be -->here<--. This is a safe zone. I want to like you. I don't want us to have a barrier between us because, ugh, I have no choice now but to address this."

Unfortunately, it's not something I can ignore.

Especially in a situation like this one.

The old me, trust, would have grabbed my kid (who was in the room by this point), ran out crying, vowing to never have her cross such an oppressive threshold as long as there was breath in my body.

You may think that's extra-dramatic, but I'm telling you, I can see myself starring in that scene as clear as if it had actually happened.

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And that's where I stopped writing that day.

I can't take myself back to that exact place, so I feel like I'd be doing a disservice to the person I was that day if I just tacked on how I feel today.

In short, I did stop the teacher that day. She was mid-sentence about something totally different. When she had used the word that offends me so much, what she said was, "I don't know why they have this on the form here. It's so retarded."

I called her on it. Very nicely, but I couldn't let it slide. I mean of all things, she's at work, with a parent, in an IEP meeting. You'd think that at least one of those things would have told her to initiate filter usage.

Her reply was a story about how her dad was in a wheelchair when she was growing up and that other kids used to ask her if he was retarded. So, you know, she gets a pass.

Oh. Ok.

We spoke a couple of days later about an unrelated issue. She used that time to apologize. She said that it had been bothering her and she felt really bad. I elaborated as to why some people find that word offensive.

I have no way of knowing if she got it or not. I'm still bothered. Obviously.

Another reality is that I cried last week. I screamed. I cursed. About this very topic. Not the teacher, but other people I looked at as friends.

They got me.

I'm not as tough as I thought.

Just Thinking

Something hit me tonight. Not hard, but more like a nudge. I wonder about my sensitivity to terminology. I wrote this yet-to-be-published-and-I'm-not-sure-why post last week about usage of the r word and how I react differently to its usage now than I did even six months ago.

I still don't think it's ok, but it doesn't hit me in the same way as it did before. To clarify, still don't like, but won't cry over it. I totally have cried over it in the past.

So, seemingly non-related, over the weekend, I watched a movie. It was released in 1934. Imitation of Life. If you've seen it, you know how big a role race plays in the film.

I've loved Imitation of Life for years and years, but not this version. I always watched the one from 1959. But, since BD opted in on a Netflix trial recently, I thought I'd finally give the original a try.

Lemme tell you something: HUGE DIFFERENCE.

I was like "whoa" and cringed quite a few times at the portrayals and the verbiage used in the 1934 version. I'm not naive. I know that was a very different time, but still. Whoa. I found it hard to watch.

At one point, two girls are playing and one begins to cry because the other called her "black." Except, to me, today, she was black. Then, that was an insult. The mother of the little girl who said it told her to apologize immediately for saying such a cruel thing to her friend.

What does this have to do with the r word? Well, nothing really, but it's the terminology that struck me.

Tonight, while in the car, I was listening to Dr. Berman's show for a minute. I came in just as a lady who had called in for some advice was talking about her daughter. Apparently, she wanted Dr. Berman's help with her dating methods. She felt like she was, in her words, "a very good catch" but she had concerns related to her "special needs daughter." She actually said, "She's special needs. She's Down syndrome."

I cringed. Just like I did while watching the movie.

I mean, there's nothing inherently wrong or evil about what the caller said. It's just not what folks in my generation typically say when describing their child. These days, people I know are all about People First Language. I would never (ever ever ever ever ever) say that Playette is Down syndrome. Ever.

I don't really know my point about all of this. I don't have a conclusion, really. I just felt like sharing.

I don't know how not to cringe and I'm not sure if that will ever change.

But maybe it will.

There are just no absolutes. That I do know.

Self-Advocates Speak