*Results Not Typical

To clarify...

2012-01-26T10:39:00.003-05:00

I have heard from several of my peeps that they thought, after reading yesterday's post, that my "sweet" Playette literally showed her behind on more than one occasion yesterday.

I, for one, hate to ruin a hilarious mental image, but that's totally just a figure of speech.

It was more like a case of Preschooler Behaving Badly.

Urban Dictionary elaborates (warning: crass language!)

When she does explore that phrase more literally? I will be sure to let you know. Ha!

Discipline, etc.

2012-01-25T17:03:00.007-05:00

When I got home from work today, I was told by our trusty babysitter that apparently Playette showed her entire behind both at school all day and during her PT session.

My guess is that she was expressing her pisstivity that her dad has been away again. He's on his way home now (take that, crazies who may be lurking), but that didn't seem to be enough to keep her content throughout the day.

So. What to do. I was mad, sure, but how do I address this with her so long after it took place?

I mean, in my day, I would have been spanked from here to eternity for such behavior. My approach has been a little different. We do time outs. We have conversations. It feels strange since this isn't how I was raised, but I have been trying. Actually, we have been trying. BD is definitely a full partner in this entire endeavor.

In all honesty, Ds is not even a factor. We just do what we think is best to do. We certainly don't give her any leeway because of her diagnosis. This girl understands right from wrong and we hold her accountable for her actions. Typically, it pays off because she's a pretty well-behaved and ultra-polite kid most of the time.

Today, I asked her to join me on the bottom step and we had a little chat. I kept my voice even and calm and tried to recall tidbits I've learned from watching experts on TV. I told her that I was disappointed in her behavior and that she promised me that she would be a good girl at school. What she exhibited was the opposite of what we had agreed to and that made me angry.

She started baaawwwwling.

"Well," I thought, "It seems like she gets the point."

So I told her to stay on the step until I told her otherwise.

She lost it some more.

I called BD, who was sitting in an airport in NY. He chatted with her for a while.

In all, she might have sat on that step for slightly more than the customary four minutes.

But, trust me, this is progress in my world. I never expected to even entertain an approach like this.

So. Gold star for me.

=====

In other news, I hit the Dirty 30s today. I wish I meant my age, but I mean weeks of pregnancy.

=====

Also, we got the boot in gymnastics. Her last class will be next week. Apparently, I had the nerve to approach the teacher about her allowing another class to disrupt our class and she didn't like that. I'll have to elaborate more on that later. It really is a crop of crap, but I'd rather it be over than have to deal with the angst I was feeling each week. I could not have been nicer when I spoke with her, but she still decided to be offended for whatever reason. Why am I surrounded by wack-a-loons?

What sucks the most is that my conversation also impacts another child/family since the teacher didn't just cancel for Playette, she cancelled the class. Period. So now we have two cuties in hot pants and leotards with no plans for Wednesday nights.

We'll find them something better. Hmph.

L'il Mama

2012-01-24T10:32:00.000-05:00

In as many ways as we are just like the Cruise-Holmes' and the Cannon-Careys', we do differ from them in one way.

(side note: Don't you just love the internet? I totally could be writing this from my Malibu mansion or my NYC penthouse ~~or my junky guestroom/playroom/office in someplace much less exciting~~. You just never know!)

We don't have our own ultrasound machine.

But we do have a doppler.

And Playette loves to listen to the babies with it.

Yeah, there are two.

You didn't know?

Mine and hers.

She was way intense last night and wouldn't talk to me much on the video. I never planned to record her, she was just concentrating so hard that I figured why not since we were sitting there for a while and all.

Another Month Bites the Dust

2012-01-23T20:13:00.010-05:00

I have had this song stuck in my head for like a week.

You're welcome.

They used to play this at the church I went to whenever a couple got engaged. I thought that was like the best thing ever. Everyone cheered and it turned into a party. Not very traditional, I know. Shoot, it was stuff like that that got me in the door and kept me there so long. By the time I was betrothed to BD, they didn't do it anymore. Boo. I still can't help but think of that every time I hear the song though.

Anyway. So I've been gone. Again. Blah blah blah.

I really do have good reasons. Wanna hear 'em? Here they go:

1. I know I've posted since then, but I never really elaborated about our Christmas trip to the Dominican Republic. It was rather awesome, if I do say so myself. We didn't get to go away last year since we were in the midst of a post-deployment cross-country move. And then, over the summer, we were quite The Busy. BD was working and we were hosting company weekend after weekend. It was pretty chock full of activity and we hardly missed getting our passports stamped between beaches, lakes, and San Antonio.

So, yeah. The DR was a great get-away. I slept on the beach a lot.

And we ate a lot. Playette made plenty of friends everywhere she went. We forgot we had brought an actual camera until the last two days. Whoopsie! But I did get this cute little clip of her with my phone after the resort staff handed out gifts to all of the kids. It was an impressive stunt, even after a parade complete with brass band and landing Santa on the beach in a helicopter.

I'm not even kidding.

Obviously, I'll need to devote a post to this trip.

2. Right after we got back, it was off to DC for an amazing New Year's Eve wedding of a very good friend. Can you say Best Wedding Evah? Yeah. Cause it was. From the goody bag in the room (complete with a red velvet Georgetown Cupcake) to the steel drum playing during the cocktail hour to the fun photo booth to the hip hop violinist while we dined on amazing food. I totally made myself stay up until the music stopped at 2am.

Again, I'm not kidding. Hip. Hop. Violinist. It was all sorts of amazing.

I wore my sparkly shoes for the occasion and was feeling super cute, belly and all. Even though several people were concerned that I'd be giving birth on the dance floor. Apparently, I am very large. It's nice that people remind me of that, isn't it?

3. The next morning, we had to hop out of the ever-so-comfortable hotel bed and make our way to pick up Playette from her sleepover with my friend's kids so that we could get home as soon as possible.

Why?

Because I had to fly to Tennessee at noon on Monday (yes, the holiday) to start my two weeks of annual training with the Navy Reserve. Highlight: I got to break out the khaki tent, my affectionate name for the maternity uniform. That thing is not only super comfy, but totally unflattering. And it has no pockets, so it's also impractical. Woot!

I met some great people, had a few fantastic meals, learned a lot, saw the Globetrotters, went to the National Civil Rights Museum, skipped Graceland on Elvis's birthday, and more. If my family had been there, I would have been solid. But they weren't, so I came home as soon as the opportunity was made available to me.

BD did a fantastic job of holding down the fort. And Playette. Of course I mean that figuratively. Maybe.

4. I got home and slept. Because, ironically, while I was busy doing items 1-3, time did not stand still and somehow I crossed over into my third trimester of growing a human. After 12-13 hour days of work while I was away, coming home to my own bed was absolute heaven. The adrenaline rush that kept me vertical through the training faded right along with the second trimester and my body did all it could to recuperate before I had to return to work on Tuesday.

5. And then, on top of everything, work is a boiling pot of stress. I hate it. Did I just write that? I think I did. I really need to do something about this. It's been bad since pretty much Day 1 and here we are five months later and I'm still there.

I have a goal in mind and I've pretty much met it, so I'm about one stupid comment away from being back at home full-time again. Little do they know. Or maybe now they do.

I. Don't. Care.

6. If there's another excuse in there somewhere - and who knows, maybe there was something else - I can't even remember.

But I'm here now.

And I'm feeling ~~big~~ ~~scared~~ great, so let's just ride that out for a while, shall we?

Things are going to drastically change soon enough.

Hold me?

Influenced

2011-12-27T18:09:00.007-05:00

Playette has been in a typical daycare or preschool environment for nearly four years now.

Our purpose in going that route was to expose her to other children, since she had no siblings at home, and get some positive influences from her typically developing peers.

For the most part, we've been pleased. She's great at playing and learning amongst other children and has plenty of friends that she asks for by name. She also has friends with varying unique needs. We're all about equal opportunity over here. One of her buddies in her class last year in CA uses a wheelchair and I loved that, to Playette, she was just one of the gang. Which is as it should be.

Many adults could stand to learn a lot from these kiddos.

Along with the great stuff, we get some gems that we know can only have come from being in school.

The latest is the evolution from "uh-oh" to "OOOOOHHHHHHH!"

It cracks me up. Let's say you drop something. She is quick to point and yell, "OOOOOHHHHHHH!"

Like she caught you do something wrong and she's about to tell or as a warning that you're about to get in big trouble.

It's funny because, really...how much trouble am I apt to be in for dropping my keys? And who is going to punish me for that offense, exactly?

I love that little nut.

=====

We just got in from vacation last night, so we're buried in washing tons of warm-weather gear while also trying to put together something that resembles Christmas morning for the kidlet.

Sure it's two days later and after 6pm.

How much you wanna bet she won't care?

More later...

From: Us, To: You

2011-12-25T06:20:00.002-05:00

Date Night? Meet Murphy's Law.

2011-12-19T19:44:00.006-05:00

I know this wasn't an option to select yesterday, but I just felt like sharing this story.

First of all, BD is a great husband, y'all.

I won't say that he doesn't get on my nerves and that I don't make him cringe sometimes, because...well, that would be a lie. We're human and, I guess, a pretty typical married couple. We laugh, we fuss, we work as a team. All that good stuff.

So, last Friday, I was wayyy tired. It had been a rough week at work and when I got home, all I wanted to do was crash.

But, here's some relevant history. There's this restaurant I've been wanting to try for a while and then POW! -- there was a 50% Groupon-type deal offered on Thursday so I bought two. I knew I'd want to go back because it's supposed to be that good. I was excited so I asked BD if he thought that maybe we could go over the weekend since, remarkably, we had nothing planned for once. He grumbled something-or-other and we went about our lives.

Well, apparently, he had been planning a night out for us, to this very place, for a while. On Friday night, after Playette finished her dinner, he got her into her pajamas and shoes...wait. Pajamas and shoes? Where were they going? Did that mean I'd get the TV and couch all to myself? WOOHOO!

Obviously, I'm easy to please.

I helped them out the door, totally fine with whatever was going on.

And then he came back. Alone.

Crap. Where'd he leave the kid? And was it on purpose?

He then told me that he had signed up for Parents' Night Out at her school and that we were going on a date.

How sweet, right?

As we drove, I realized that I could think of nothing in this part of town aside from the restaurant of my dreams and I started getting excited.

Right around this exact moment, my phone rang.

I answered.

It was the school.

Apparently, the kid that just was at home playing dress-up and dancing, got there and decided that she's start "throwing up everywhere."

The lady said it just like that: everywhere.

Poor BD. He tried so hard.

He busted a u-turn and ten minutes later, we pulled up at the school.

Playette was inside the room, on a cot, looking pitiful.

I thought about asking for our money back, but it seemed in poor taste since they had just cleaned up my child's puke and all.

I know. I need help.

So, back home we went. Playette seemed ok for the most part. A little tired, maybe.

Perhaps they exaggerated. She couldn't have possibly just been throwing up everywhere. She was fiiiine.

BD and I agreed to a place for takeout, put Playette to sleep on the floor in the office, and I relaxed to read a few more pages of PNT article comments.

It was making out to be one rocking Friday night, y'all.

And then I heard it.

A cough?

Another one?

Let me go check.

You know what I found, right?

Puke. Everywhere.

My poor baby.

That went on for a while.

Her eyes kept rolling back in her head and she would slip in and out of sleep. It was a mess.

BD finally came back with the food.

I had lost my appetite by then.

And, inside my head, I was freaking out about how I would have handled this sitch with another little one also needing me. EEK!

BD let me pull the pregnant lady card and I went up to bed while he stayed downstairs and woke up every hour or so with El Sicko.

It was pretty gross.

But he tried to give me the night out I wanted.

And I love him for it.

Potpourri

2011-12-19T12:07:00.006-05:00

My brain is a hodge-podge spiral of everything lately.

I create posts in my head that never get written.

And, seriously, what else is new?

I want to talk about pre-natal testing (PNT). Whew, that's a biggie. I've been reading an article lately. In itself, it's not long. It's the 190 comments that are taking time to rifle through. And there are some doozies in there. Some make me gag because they're just so over-the-top syrupy and others make me fear for my life in this country and wonder if the author is my neighbor or co-worker. You can read for yourself here.

The article was published back in September, but I only just now learned about it for a reason that I will discuss sooner than later. I just need time to get my long list of thoughts together. I figure that people have wondered about my position on PNT, especially now that my pregnancy is common knowledge, but they're too polite to ask. Which is cool. So I'll just tell.

In a similar vein, I had an appointment with, as my friend likes to call it, my "nurse collective" last week. I am officially 3/5 of the way through my pregnancy and the baby appears to be doing well. He moves a lot and he has a great sounding heartbeat. I feel pretty good for the most part and if I could just get motivated to find a support group like "Pregnancy after Weight Loss" I might be able to wrap my brain around this whole upward motion of the scale thing. Trust me, I know it's a necessary part of the process, but I still sigh at every weigh-in. I need to get over it.

At my appointment, unfortunately, I also had to deal with a question about Playette that made me think. It brought up the whole "educate or get pissed or both?" feelings again. I swear, as more time goes by, this isn't as clear cut as it used to be. At least I'm not so quick to cry anymore.

There's also work stuff that is out of control. Like, really. They have gone straight nutty on me. I know I mentioned it briefly back in August/September, but because I wasn't ready to talk about the babe yet, I didn't get into details about why what happened really sucked as much as it did. Suffice it to say that coming back was not what I anticipated.

I've got reserve duty coming up (which caused more drama at work) and I am already thinking of how much I'm going to miss Playette and vice versa. My girl really tugs at my heartstrings lately and every choice I make seems to impact her to the core. I hope she doesn't hate me when I get back. The one good thing that will come of this is my getting to wear what I fondly refer to as "The Khaki Tent" again. Not only will I get more of my money's worth out of this rarely-worn gem, but it's super-comfy. So, yay for that.

Also, I want to touch on infertility. That's not something I've ever talked about openly. But it's real. And that makes me even more grateful for what's currently going on with my body.

I hope you're all enjoying a wonderful holiday season. If you have any specific questions, please either post here or email me and I'll add it to the lot.

We'll be celebrating in a unique way this year and I look forward to telling you more about that, too.

Soon...very soon.

Anything in particular that you want to hear about first? Majority rules.

Bandwagoner

2011-12-12T15:51:00.006-05:00

Yesterday, we cut through a market on our way to meet some friends for breakfast.

Playette stopped as we were passing a booth where two ladies were selling fancy, assorted nuts.

She signed "football."

I was confused and turned to BD for help. To what could she possibly be referring?

I looked back at her expectantly.

Again, she signed and said "football."

And then I saw it.

The ladies were obviously fans of the currently undefeated Green Bay Packers.

How could I tell?

This was displayed on the side wall of their booth:

It wasn't even very big. Like, really, it took us a while to notice.

So I guess Playette's a fan?

I guess the real question is: Was she a fan before they were playing so well?

It's totally possible that she got sucked in while we were in Wisconsin last year. The Packers are serious business there.

In all seriousness, this kid continues to amaze me, y'all. The connections she makes...it just lets me know that there's so much potential in that brain of hers. We just have to tap into it.

Outtakes

2011-12-03T09:37:00.003-05:00

If you liked the shots taken by Pretend Jen for our participation in the NDSS Signature Tee fundraiser, perhaps you'll enjoy these as well. If that link doesn't work for you, try this one.

Again, we had a ball and are so grateful for having had the opportunity to play for a great cause.

=====

I feel like I have so much to say in order to fill you in on what I've been so quiet about these last ~~few~~ many months.

I will!

But first, there is a party with free food calling my name.

I'm a sucker for free food, yo.

And, of course, the kid should have fun.

Maybe I should have written that first? That's what a better mom would have done, right?

HAHAHAHAHA! And now I'm gonna have two! Watch out, fellow MotY nominees.

It's Time!

2011-12-01T17:07:00.009-05:00

What time is it, you ask?

It's t-shirt time!

You've been waiting so patiently for me to dish on what we were up to at the beach and this is it:

NDSS Signature T-shirts Are Here!

We are proud to unveil a collection of men’s, women’s and kids’ t-shirts featuring 3:21 on the front and the NDSS logo on the back.

Adult shirts are $25 each and kids’ shirts are $15 each. For each signature shirt purchased, $5 will be donated to NDSS.

Men:
Guys will love the fit and feel of this t-shirt, made from 100% cotton with anti-pilling finish. It is so comfortable it will become an instant favorite, and its subtle message will make you feel good about wearing it as often as you wear your favorite jeans (okay, maybe not that often).

Women:
The quality and fit of this t-shirt will make it the one that spends more time outside your drawer than in it, and will help you spread the word that people with Down syndrome are valued and loved members of our society. This flattering style and color options suit all sizes and skin tones and is made from 95% cotton, 5% lycra with an anti-pilling finish.

Kids:
Whether they're learning to tell time or setting their own alarm clocks, kids will love knowing the 'secret' meaning behind 3:21 and will enjoy being the one to share this info with their friends. It's always the right time to learn to accept and include someone with Down syndrome. These t-shirts are made from 100% cotton with anti-pilling finish.

Rhyme & Reason clothing can only be purchased online. Standard shipping time is 3-5 business days. Customers can use the code NDSS25 to receive 25% off their purchase and free shipping from now until the end of the year and 10% of the purchase will be donated to NDSS – this applies to any item other than NDSS signature t-shirts.

Click here to visit the Rhyme & Reason website (and see the cutest little model EVAH).

Click here to view photos of the NDSS Signature t-shirts on Facebook (if you can't see them, "like" the National Down Syndrome Society page).

And here's the newsletter, featuring another little surprise quite prominently.

=====

It's been super fun participating in this project and I'm so proud that we were able to help NDSS, in our small way, to raise awareness.

Plus, I got to tell you something awesome in a really unique manner.

If you missed it, GO CLICKY-CLICKY THE LINKS!

And, please, if you like the shirts, buy them! I absolutely love ours.

Thanks for playing, y'all. :)

C'mon now. Really?!

2011-11-30T09:58:00.002-05:00

For me, a trip to the ER has become a little too commonplace.

Because it had been a while, we went ahead and visited on Saturday.

It was the strangest thing, really. I was in the bed, lounging, reading my Twitter feed and a few friends were discussing [something pretty damn gross].

"Hm. I've had that happen before. It is no bueno," I thought to myself.

And then, I turned over to my side, coughed, and [that same something happened].

*sigh*

So I called BD to show him the proof and he was all "ewwww" and suggested that I contact a medical professional.

I made the call, got the answering service, explained my situation, and waited on a call back.

And, because I'm that kind of person, I decided that before we did anything, we needed to go to Costco.

Because I'd be fired up if I ended up admitted and couldn't use my coupon.

Turns out that the advice I got was to go to someone's urgent-type facility, so after I did what I wanted (I know, I know), we went to the hospital. It actually made more sense to go there than somewhere else based on my insurance coverage, plus I knew that if I needed tests, I'd already be in the right place.

Thankfully, traffic was light in there during that time, so we were in and out in a relatively quick 2+ hours. Playette enjoyed the time outside with her dad after I had to kick her out of my room for touching everything and just plain being four years old and I played with my phone in between repeating my same story to every person that walked into the room (what's the point of them taking notes, anyway?).

A chest x-ray later, it was revealed that I, thankfully, do not have pneumonia again some more, so I was released on my own recognizance.

We celebrated with lunch at a new-to-us place and then went home to football for them and a nap for me.

Exciting, huh?

We are some serious party animals over here, y'all.

After that, things were pretty tame for the rest of the weekend. BD put up the tree, I rested and addressed envelopes, Playette did her silly little thing as she is prone to do.

I just realized today that we are sooo booked for the next six weeks or so. Going here, running there, parties, family time. And I just found out that I have reserve duty in January. I'm excited for what I'll be doing, but bummed to have to leave my peeps behind. I know first-hand how Playette gets when BD leaves and the thought of her missing me that badly just makes my icy heart crumble a little around the edges. Poor little boobah.

Or she could just be thrilled to have me gone. Who knows.

Oh, and I know I've kept you all dangling for deets. It won't be long now. Promise!

Maybe I should put a Neicy Nash flower in my hair for Reveal Day.

What I Like

2011-11-24T08:56:00.015-05:00

What I like about this Thanksgiving is that my little fam is all together.

Sure, BD is at work right now, but he'll be home soon and, hopefully, phone calls of things going haywire will be kept to a minimum.

Last year, he was on a ship on the other side of the world while Playette and I spent the day sightseeing in San Francisco. He never even got the chance to have dinner since he was on watch and we (well, I) decided to forgo anything that resembled the traditional holiday festivities on that day (we did dine with friends the week prior) for fear of getting all sad and not focusing on what we did have. That can be tough, y'know? We're a unit over here and when that unit gets disturbed, it takes a bit of a toll.

=====

Hey. I don't think I ever posted any of those pics. I was a little overwhelmed last November. Wanna see some?

We stayed at the Marine Corps Memorial Hotel downtown. Great hotel, great location (the happy hour and breakfast buffet are a nice touch, too). Playette liked the mascot statue in the lobby.

We dined that night on yummy Italian fare. I think we split a plate of gnocchi.

In the morning, we went to Pier 39 where we took a boat tour around the bay.

I remember that I had to make the decision to put my camera away after the tour because crowds + squirmy, inquisitive kid + 1 adult meant something had to give. We did end up going on the carousel though. And also some movie thing. It wasn't a long deal, so maybe a 3D/4D suck-the-money-out-of-a-parent's-pocket feature? I can't recall. She did sit through the whole thing though. I was really happy about that.

=====

So I'm excited that today BD gets to eat and eat until his heart is content. We don't even have to cook or travel far, so that makes it even better.

My co-worker/friend has invited us to her house and she already has most of my donations. All that's left for me to bring is the carrot cake I made last night, some whipped cream for the pies, and my tupperware.

Because you know I'm bringing stuff home to nosh on, right?

The menu we planned includes things like two fried turkeys, ham, mac and cheese, dressing (I call it stuffing even though it's in a pan and not a bird, but we've agreed to disagree), greens, sweet potatoes (she swears by the kind from Honeybaked Ham so that's what I bought instead of making my own; we'll see), rolls, and...ok, I know there are sweet potato pies and my cake for dessert as well as a million other things, but I'm drawing a blank. It's too much food though, trust.

Oh! I did contribute cans of cranberry sauce, too. Because this girl here? Likes to cut the jelly along the ridge lines. I will never not like to do that. Fancy homemade stuff is fine and all, but I needs me some ridge-lined jelly.

I spent some time yesterday brainstorming on holiday card ideas. For a sorta-Scrooge, I am way into that and I can't even explain why.

We have lots going on for the next month. Good stuff to wrap up the year quite nicely. I even have a dress to go with those sparkly shoes and I can't wait to put them on together to ring in the new year while celebrating the nuptials of a good friend. Yay for parties and glitter and new beginnings!

I'm looking forward to today. And many tomorrows.

I hope that you are, too.

And please hope along with me that today is NOT the day that my cake decides to suck. Does anyone else get nervous like that when bringing food to someone else's house?

Lovely Day

2011-11-20T17:35:00.004-05:00

This song has been stuck in my head lately. A version (not sure who sings it) comes on Playette's favorite radio station and I love that I knew some of the words right away and can sing along to it with her. She loves it when I do that.

Despite my lack of sleep and a list of things that still needed to be done no matter how crappy I felt, I have to admit that today was a lovely one.

Playette got up at 3am. Why? I have no idea. I assumed that she didn't know either so after giving her a potty break, I put her back in the bed. I figured that we could pick up our little convo once the sun came up and, thankfully, she agreed and didn't start yelling for me again for about 3.5 more hours.

For some strange reason, we got temps in the upper 70s today, along with sunshine. Since I needed to fulfill a promise to head to the beach with the fam (seriously, in the way of promises, that's a good one), to the beach we went, along with our faithful helper, "Pretend" Jen.

Playette has been asking and asking for the beach since the time had long passed to take a dip in the water, so she was very happy just to be there and have the opportunity to play in the sand in her jeans and tee shirt. I wish we could have stayed longer, but there was a birthday party to attend for one of Playette's school friends. Apparently, she had a ball. Being that I am currently hosting a myriad of germs, I wasn't able to make it. Boo.

I can't wait to show you all what we were doing at the beach though. Really. I'm excited!

But...I need just a little more time to get it all together.

So, please, bear with me and all will be revealed.

I hope everyone is getting in the spirit of the upcoming holiday in the US.

Can I just say that I CAN'T WAIT TO EAT?!

Seriously. The food. Bring it.

What had happened was...

2011-11-18T19:25:00.004-05:00

Remember how I was all excited last week to meet the ST that, like, totally had the potential to be my lifesaver?

And we were going to go there after a trip to the dentist?

Well...

We didn't quite get that all done in the manner I was expecting.

And now here it is seven days later and I'm just getting the breathing space to talk about it.

First, let me say this: BD was gone. Again. He had to go back to Norway for close to two weeks. I whined almost the entire time because I was EXHAUSTED and I wanted him HOME and all of the sudden none of the jars in the house would open and there were bugs that needed killing and I wanted to grill things but I don't trust myself with propane (no, really) and blah blah blah, oh pooh.

It's amazing how independent I was before I got married and now? Hmph.

Anyyyyway.

The dentist trip started out ok.

Until I got in the car.

Because that's when I realized that were weren't going where I thought we were going and now we'd surely be late because I hadn't planned on driving that far away. Ugh.

Eventually we got there. Late. And...it just wasn't my type of scene. There were these huge, unsupervised children - pre-teens? - on the play structure meant for children 4' tall and under, which of course my child wanted to play on even if that meant she would be trampled. There was yelling and screeching and...just when were they going to call us up, anyway?

The answer to that would be "five minutes from never."

We waited for over an hour. During that time, I saw a little boy finish seeing the dentist only to come out to the waiting room to no parent or guardian waiting for him. Regardless of the many signs posted NOT TO LEAVE YOUR KIDS.

Maybe one more sign would have helped.

When we finally did go back, Playette did fantastic. I was way more impressed with her performance than that of the staff. Zero patience for that crap, I have.

We happily left not knowing anymore about her mouth issues than we did when we came in and then yesterday? At this feeding specialist appointment we went to? Guess what they told us to do? GO TO THE DENTIST.

BWAHAHAHAHAHAHAHA!

Insurance is going to laugh in my face.

"Yeah, I know she just went, but now can we go see a good one?"

And that's when things started going downhill.

After the crappy trip to the crappy dentist, I mean.

Playette seemed fine at first, but then the vomiting began.

First, on the beautiful Middle Eastern rug, then on herself, on the carpet, all over me, on blankets, on towels.

It was awesome.

(Needless to say, we had to cancel ST. womp, womp)

This kid never gets sick so when it does happen, I'm totally caught off-guard. I did my best to channel my great-grandmother and just keep pressing, thinking of how she'd call me a wimp since I only had one kid to take care of, didn't have to pick cotton or tobacco, have indoor plumbing, and (gasp!) there's a machine that washes all the pukey laundry for me. I mean, really.

I figured that if I just kept moving that I'd be ok, so that's what I did.

Somehow we made it to Saturday.

Saturday, there was no puking, but the scary high fevers and lethargy started. I think we watched a lot of TV that day.

I thought everything was done on Sunday. And then Monday happened.

But! BD was home by then, so at least there was backup.

He stayed home with her on Monday and they got some good bonding time in. By the time I got home though, she had a crazy rash on her face and nose (BD: "Didn't she look like that yesterday?") and she was pulling on her ear, saying "Oweeee."

Now, this is "funny."

Nary a week before, I was telling her Ped about how my kid had never had an ear infection and she was all, "Really?!" and I was all, "Really," as I popped my imaginary MomCollar.

So to teach me a lesson, the Ped totally gave Playette an ear infection and called it a flu shot.

Totally plausible, right?

So there we were, six days later, with Rashface McGhee, pulling on her ear, and I called that Ped's office right back. "Y'all are open until 8, right?"

"Yes, but we're all booked up tonight. Please hold for the Triage Nurse."

I turned to BD and begged for him to handle it.

I don't know about your situation, but when BD deals with the Ped's office, things always get done. They are sooo nice to him, wherever we are. The same thing was true when we lived in CA.

They ended up telling him the same thing, but then an hour later, miraculously, there was a cancellation so off they went. The front desk ladies are nice and all, but they would never have called me back with that revelation. Never.

Verdict: double ear infection

Playette and BD and Amoxicillin stayed home together again on Tuesday.

Oh, and somewhere in there, the truck started smoking and scaring the crap out of me while I was driving home from work. Like a doof, I screamed while driving it all the way to our driveway, where I jumped out like it was about to blow and ran to the front door, panting and wondering if maybe I shouldn't have parked it so close to the house because it was going to up in flames any minute.

Wait. Now I remember. That was also Monday.

The truck went in the shop on Tuesday and we got a rental car.

I'm pretty sure that repairs were $8 million, but I refuse to confirm with BD because I will break out in hives.

Yesterday, I took off work to take Playette to that feeding specialist I mentioned earlier and then I had an appointment of my own in the afternoon.

To celebrate making it through all of that, yesterday afternoon, I bought totally impractical, really sparkly girly-girl shoes.

(Photos do them no justice.)

And I'm not even a girly-girl.

Ask me if I care.

S'up, Y'all?

2011-11-10T13:56:00.003-05:00

I honestly didn’t mean to just straight disappear for the most part after the end of October, but the last couple of weeks have been some doozies in our household. There’s just a lot going on and I’ve barely had the thought to blog, let alone carved out the time to actually do so.

Work is very busy. Well, sort of. I mean, there’s lots to do and way more confusion than I would like, but…eh, it’s complicated. I’ve had to take off a couple of sick days lately. One day last week for me, one this week for Playette, and then another will be next week for Playette in the morning (She’s slated to see some fancy feeding/swallowing doctor – not a therapist. Don’t worry, I’m confused, too.) and I have an appointment of my own in the afternoon. Best bet was to take the whole day even though I know that will be one hectic day between going to the city, back home to drop her off, and back into the city again. Yeesh!

Tomorrow is a holiday for us, so yay for a day off of work, but since Playette also doesn’t have school, we’re going to try to make the most of it by squeezing in a much-needed dentist appointment (pray for me) and then, in the afternoon, I get to take her to her new SLP. She’s had two appointments so far, but since they’re at 3pm, the sitter has been taking her. I’m glad to have the opportunity to finally meet this woman who is, to me, the representation of all of my dreams of the past year finally coming true.

See, we had out eval with Sara Rosenfeld-Johnson last November, I believe, and during that process, we got connected with a Talk Tools certified SLP that we were able to see twice before we moved. Even then, we had to drive over an hour to get to her because there was just NO ONE closer and I believed with my whole heart that Talk Tools was the way to go for Playette. I liked the SLP a lot and we tried to make an adventure out of it so that the early morning drives didn’t feel so daunting. As you all may recall, we then had the audacity to MOVE at the end of December once BD returned from his deployment, so that marked the end of Speech Therapy for a very, very long while.

Which sucks.

Because what is my daughter’s greatest challenge (well, besides using scissors which is the current bane of my flipping existence)? SPEECH.

When she started school in January, she did get some time with the ST there. But then, y’know, we took her out of that awful place in April after the teacher used the R word in the IEP meeting AND the bus drivers played that precious April Fools practical joke. Such a shame to leave such sweet folks, but I digress.

So, the little bit of ST she was getting disappeared. I was so torn up at the time about what was going on between us and the school district that I didn’t pursue their services at her private preschool. Plus, I just KNEW that we’d be coming up on one of the many, many waiting lists we were on for ST…any. day. now.

Ha! So much for that. If you are the parent of a child with special needs, you have probably noticed that there are a lot of children out in the world with “speech delays.” It’s a pretty common diagnosis. So, getting in to see an SLP, especially one with experience dealing with oral motor issues, not to mention the added bonus of being familiar with or certified to utilize Talk Tools? In a very congested area? Yeah…waiting lists. Long, long, long waiting lists. I made more phone calls than I can even recall, trying to track down someone, anyone, that could work with my girl.

Thankfully, we were so grateful to have Beth come by this past summer (housecall, woot!) to help me learn how not to be so overwhelmed by the whole oral motor process. She is a wealth of information and I am inspired so much by how well her daughter, Hannah, is doing, along with her other children. I hope I can be half the mama she is one day.

To bring you up to speed on this new SLP we have, about a month ago, she called me out of the blue and said that Playette had come up on her waiting list. I was shocked. She went on to tell me that she’s Talk Tools certified. I was stunned. The issues then became dealing with insurance (gag) and the logistics - her only openings were on days/times we were otherwise obligated, plus her office was REALLY far away.

Over the course of a couple of weeks, we got it all worked out. The insurance thing made me want to stab my eyes with a spork, but eventually that was rectified. And then, this woman offered to do some shuffling and got us in not only at a time where we could make it, but also at a closer office! Where has she been all my life?! Or at least for the past 10 months?! So, once I coordinated with the sitter, we were set. Yeehaw. Get along, little doggie. Forward momentum. All that good stuff.

So far, Playette has been twice and things are going well. I’m actually excited to meet this life-saver of mine tomorrow and see what she has to say about possible next steps. As it stands, I still have a massive drooler on my hands (and, yikes, winter is approaching and wet + cold = ugh), and you know that noise I mentioned that started last year? It STILL has not made a graceful exit yet.

And if you think that over time that it would just blend into the background? You, dear reader, would be incorrect. It’s just as grating as it was the first day she started. More so, in fact. More. So.

I felt like I wanted to write more than just about this topic, but my brain is all loopy at the moment. When it comes to me, I’ll be back. Promise.

Loves It

2011-11-04T20:22:00.001-04:00

And Now, Some Words from Our Sponsor

2011-10-31T08:42:00.006-04:00

My turn again. BD dropping in for his once a year check in. The one day of the year you have to deal with my poor English and pitiful writing skills. We’ve had one interesting year.

How time flies. This time last year I was sitting on an aircraft carrier listening to airplanes crash land on top of my head. I was off “saving the world”. It’s my job or something. My job also called for us to completely uproot ourselves and try out some new scenery to call home.

As fun and exciting as traveling around the other side of the world is, being away from the Momma and Playette always makes me sad. I know they don’t see it that way, but these 2 ladies are my world. I’ve been on deployments away from the US before, but this was the first time I had to do it since these ladies came along. It is a much different experience trying to be a husband and father from the other side of the world, with little to no internet and extreme conditions on every day. Just getting to talk to them for a few minutes every couple of days was great motivation to keep going over the entire stretch.

I was very impressed with how my wife managed to hold it all together while I was gone and then again as we moved. Having to be a single parent on random notice for weeks to months at a time is an extremely hard lifestyle that the majority of people aren’t capable of. The fact that she’s committed to doing it for the benefit of my career just shows how awesome a woman she is. I’m very lucky to have her! Love you babe!

The little one continues to grow and impress. She’s amazing to watch and an extremely cool kid to just hang with. She’s my partner in crime and every minute we hang together is just the best thing on earth.

Going away is never easy, but as they say distance makes the heart grow fonder, and that has definitely been true this year.

Every time I come home to them I realize there is nothing better than their love.

BD Signing out. See you next year peeps.

=====

2008
2009
2010

=====

More About Yesterday

2011-10-30T20:22:00.004-04:00

So, as I was saying before we had to pack up and head home, I didn't get much sleep Friday night. I did see lots of Law & Order though.

Thankfully, the wedding wasn't until 2pm, so we could move slow and take our time getting ready.

The weather was not too friendly though. Saturday was pretty nasty all up and down the east coast. Not to be deterred, BD and I made our way through the wintry mix to a local diner and indulged in lots of wonderful breakfast-ness.

Oh! That reminds me. Before all the hotel drama on Friday, we did get the chance to try a pretty nice Japanese restaurant. For dessert, we indulged in an order of Oreo Cheesecake Spring Rolls. If that kind of thing sounds good to you? It was just as you imagine. Yum!

We arrived to the wedding just fine and the ceremony was quite nice. My friend looked amazing and so very happy. I almost teared up a little.

The reception was a total party and our table was the party within a party. I've never seen anyone get kicked out of a wedding for having too much fun, but if that were ever to happen, I think it would have occurred at Table 11.

And then the music started. The bride is Liberian so we all enjoyed participating in the lively traditions. I was jealous that I'm not Liberian, too!

Table 11 represented well on the dance floor. Out of the 10 of us that sat there, 8 of us were responsible for shutting the place down. Really. At the end, it was the DJ packing up his equipment, the bartenders cleaning up, the coordinator wrapping up final details...and us.

So, yeah. A well-utilized night out. We made 8pm feel like 2am.

Bonus: I'm a huge fan of The Amazing Race and one of the former contestants is a friend/co-worker of the bride. She not only sat at our table, but her date to the shindig was none other than her partner from the race! How cool was that? Uh, very. They were part of the Elite 8, too. They could hang. Loved it.

This morning, I woke up early and BD went downstairs and grabbed us some to-go breakfast that we enjoyed in bed before making our move to come back home. It was a long ride back, but the weather had totally cleared up, so it was smooth.

Playette was glad to see us, but moments after we got home, she was already asking for "Pillow." Poor girl. She's not going to be happy until both families are living in a split level or a commune or something.

I'm glad that she had such a good time though. Being a transient family, it's nice to meet people that you can trust with your kid when you really need help in a pinch. We're so very grateful.

Yesterday

2011-10-30T08:36:00.007-04:00

So. Well. Yesterday.

I was planning to just come and post something so that I wouldn't feel bad for missing a day, but that didn't happen. It completely slipped my mind before things got crazy and then after? I passed out from exhaustion.

BD and I got some alone time this weekend thanks to a great friend who offered to keep Playette for us. That friend is her bestie's ("Pillow") mom, so little miss was all too thrilled to get some extended time with them. To date, they've gone pottery painting, fine dining (CFA, woot!), attended the Ds group's Halloween party for kids (she won the costume contest!), watched movies, hung out with more friends, and, I'm guessing, tormented the crap out of his mom. Bless her heart. And her sanity.

Meanwhile, over here, we checked into a nice hotel and eventually realized why we scored such an elaborate suite for such a non-elaborate price. Turns out they were in the process of re-surfacing the floors of the parking garage.

Ok, fine. No biggie, right?

Except that by doing so, they filled the place with toxic (?), potent fumes. I guess they tried to keep us from being bothered by putting us in a very high room, far away from the elevator (which was bringing the smell to every floor), but no.

I don't do so well with weird smells and things that trigger my respiratory issues, as you may recall.

So, first, we asked for something, ANYTHING, that could possibly help. Candles? Air freshener? Plug-ins?

Someone came in a sprayed some crap, but then it smelled like flowery toxic crap. I tried to focus on the flowery and went to sleep.

Four hours later (at 2am), I was up again. The smell had tapped me on my shoulder and said, "Geeettt ooouuttt."

My mama didn't raise no fool, so after asking the front desk (at 3am - see? I really did try to tough it out) for an alternative, I called another hotel to check availability. I figured that while moving would suck, at least we didn't have to be up early.

We didn't hear back from our front desk guy for a while, so we started to pack up.

Some time later, we still hadn't heard from him, so we left.

When we got downstairs (soooo much worse down there), he said that he had just tried to call us. His solution? Send us elsewhere at their expense.

Wow. I thought customer service was dead?

Apparently, it still kinda is because he said that everything took so long because he called his manager for approval and she said she'd call him back after she got off the phone with her mom. And she never did.

Ooooook.

He's probably going to get fired for helping us. Ugh.

So we moved. We had a view of the HVAC system instead of the city skyline, the tiniest bathroom ever, only one tv, and no living room. I mean, really. How would we make it? @@

But I could breathe. So, yay!

What I couldn't do was go back to sleep, so I indulged in four episodes of L&O while BD snored away.

Consider this Part I of our tale. I'll share the rest later today after we get some things done.

Giving #47 the Side Eye

2011-10-28T12:12:00.009-04:00

Dear Extra Chromo,

I go back and forth regarding how I feel about you. In some ways, I do believe that you help my daughter to be the very person I adore and if you were taken away, would she be that same person? If I had that choice to make, would I?

In the past, I’ve always said that I would, if I could. I don’t think that’s changed for me, really. The decision’s just more complicated by the good things that come along with this new community that I was ushered into over four years ago unaware. There are lots of wonderful things I like about that.

I love the people I’ve met, the places I’ve visited, the things I’ve learned.

I appreciate my increased level of patience and compassion. I look people that are different in the eye. I say “hello.” I understand their value in this world.

I enjoy celebrating the accomplishments of not only my child, but the children of others who also have similar unique needs because I now understand what level of determination, passion, and commitment it takes for them to reach that milestone.

And sometimes, just sometimes, I crave the fire that the fight for my daughter’s basic rights brings to my being. It makes me feel alive and purposeful.

But.

Then I think about how you stripped away the joy that others speak of when they first held their child after it was born. That “love unlike any other” feeling? I didn’t have that. I was afraid. I was sad. I was completely and utterly devastated by the unknown. You did that.

I think about how people look at my daughter and feel pity before ever giving her the chance to show who she is and what amazing things she can do. They lump her into categories reserved for what they believe to true about all people with Down syndrome. No wait: “Downs kids.” You did that.

I worry and have sleepless nights, scared of what might happen if she stays so friendly and continues to never meet a stranger. People prey on such things. You did that.

I want her to succeed academically, but then think that, if she does, and she’s fully included that she’ll only be patronized and not truly be accepted as a peer. You did that.

I can’t stand in line at a restaurant on family night without someone feeling like they have the right to come up and tell me that my child, who they have never met, “…might read one day. Just not at the level of a normal child,” all the while making sure to remind me not to keep my expectations too high because some parents are uppity like that and think their kids are higher functioning than they really are.

The features that revealed my baby’s inner struggles and opened up the door to insensitivity and presumptuousness are thanks to you.

The fear, the guilt, the pain. Sure, maybe I would feel that in some instances had my child been born like the other 690.

All parents wonder. All parents feel like they can do more. At one point or another, we think we’ve failed and are grateful for second, third, fourth and many more chances.

But some days I just have to think that it’s more for me because of you.

That’s why I don’t like you.

That’s why I’d let you go if I could.

But I can’t. I know that. And I deal. And I’m probably a lot stronger for it than I realize.

I do the best I can and I don’t dwell on the “why?” anymore.

I’ve passed the phase of trying to answer the question of “How dare you make an appearance in my life after all of the things I’ve been through?!”

I understand that we are a part of the “why not?” club.

The only criteria for membership is you.

I’m sure we’ll struggle, you and I, over the years. Many days, I’ll accept you wholeheartedly, not caring at all that you exist.

And then one day, out of the blue, you’ll sneak up on me, tapping my shoulder with an aggressive reminder of all that is different, all that is more difficult, because you exist.

I hate to give you so much attention. Really, I do. It probably makes me look weak and puts you in the position of appearing more powerful in my life than you really are.

But I’m confrontational like that. If I didn’t tell you, you’d never know.

I love my kid.

I’ve got my eye on you,

Gracious

2011-10-27T18:52:00.005-04:00

When I was in college, there were a lot of rules. Especially the first year.

Meals during that time were quite interesting. Sit on only the edge of the chair, six inches in. Stare at the top of the plate. Request everything in a specific way. Have the menu memorized. Serve the upperclassmen. Don't speak unless you're utilizing the aforementioned request sequence.

It's been (ahem) several years and all of this seems like yesterday.

There was one other thing I remember vividly about lunches during Plebe year: grace.

Yup, the blessing of the food.

Because, in the midst of all this seriousness, we said grace.

Well, actually someone said it for us.

The Regimental Commander was quite the intimidating figure back then (as adults, we became friendly and I couldn't have been more proud when he was selected as a White House Fellow several years ago). He was tall and had a deep voice with an amazing accent that revealed his Haitian heritage.

He pretty much scared the crap out of me. But that's what he was supposed to do.

And everyday he would literally say grace. I found it hilarious. He yelled out so that every student in the dining hall could hear him, "GRACE! SEATS! Eat."

Never before had I considered saying grace as, you know, saying "grace."

I recount that story because not since then had I tittered at the blessing of food until Playette came along. She gets so much satisfaction out of it. She reaches out both hands to us (she sits at the head of the table and we're on either side), says whoknowswhat (hopefully, she's not praying that we'll choke on our Brussels sprouts) and then gives all of our connected appendages two pumps to the tune of "Ayyyy-Men."

We never know if this routine will occur before we eat or right in the midst of a mouthful.

And if that wasn't enough, she recently has acquired the habit of ceremoniously licking every finger before she reaches her hand out to be held. Usually it's on my side. Today BD got wet willied, too. It's so frickin' gross.

But I laugh every time.

Love her.

Three Things

2011-10-26T21:05:00.004-04:00

1. Tricia was so kind as to share this video with me of Jamie Foxx and his sister, Diondra, (as well as others) at the Global Down Syndrome Foundation's Be Beautiful Be Yourself Fashion Show and fundraiser. How much would I have loved to have been there? A freakin' lot.

2. Gymnastics was slightly less awesome tonight as my child had a totally random and very rare accident of the #1 variety and then decided to top that feat moments later by spitting up some of her spaghetti dinner. At one point, she was walking around in a borrowed pull-up and a jacket because I didn't have any backup clothes ~~because I'm cocky like that.~~ Mom of the Year, ladies and gentlemen! Here I am. Right here.

3. Things went fine with my friend and the young man with Ds. I guess I didn't totally ruin everything, but my info didn't really end up coming into play this time. I was assured that he'd keep everything I shared in mind should the situation ever come up again. I hope you all can understand that I don't want to violate his trust by sharing any additional details. I just thought it was really cool that he asked me and found it heartwarming that all this advocacy is not always in vain.

Sometimes, it feels like I'm always talking to people that already know and understand everything I'm sharing, which is great because I totally need the support and validation, but...I also feel good knowing that people that don't have personal experience with Ds, especially people I haven't seen in many years, can get something from this as well.

Ok, fine...

2011-10-25T20:18:00.003-04:00

So maybe social networking is not totally evil. At least not all of the time.

Today, I received a message on the Book of Faces from a friend from college. He asked me my opinion regarding how he might handle a specific situation with a person with Ds in his professional life.

I couldn't have been more thrilled.

Seriously. I love answering questions.

Now, I don't think I'm the end all-be all when it comes to Ds. I don't know everything about everyone with 47 chromos, by far. But, I swear, it's nice to be asked. He didn't have to do that. It was respectful and genuine and that's the most I can ever ask for.

I took the time to think through my response, not wanting to do either him or the person with Ds a disservice. I thought about different scenarios. I weighed one possible situation versus another. And then I thought some more. And googled.

I probably gave him way too much information.

And when I finally sent what I had come up with, he responded. He told me that what I told him was pretty much in line with what he was thinking and that I gave him a few additional tips that may prove helpful.

I still can't help but think that I totally screwed that up because I am a pessimist at the core of my icy heart, but hopefully it all went fine.

I have to admit, if it weren't for FB or this blog, we may not have ever had that exchange.

So, fine. I give one up to the wide, wide world of web.

*shaking my fist ominously at the sky*

And now? There are some kids on my lawn that I need to go yell at.

In My Head

2011-10-24T20:00:00.004-04:00

This is the first year that I can recall not being all stressed about trying to fulfill my 31-for-21 obligation to post every day in October. I think that may be because I'm not trying to make it all about Ds this year. And that's easier for me to do now because, as time has passed, that's become more of a side item in our dinner or life instead of the main course.

Ok, that was a little goofy, but you know what I mean.

There was a point where my life was all Ds, all the time. And not in a good way.

It was more like an overwhelmed, really sad, looking for a light at the end of the tunnel kind of way.

And I have to say, while our lives are now filled with more people and families that identify with Ds than ever before, it doesn't feel like too much.

It feels just right.

I love my friends with no children. I love my friends with typically developing children. I love my friends with children that came with a little something extra.

It's made my life rich, I think. I can't say "richer" for sure, because who can say, but rich fits just fine.

I like knowing that I'm not the only one wondering about Kindergarten placement.

I like being able to laugh at things our kids do only the way that parents who are "in the know" can.

I like answering questions from people that are asking because they care and really want to know what I think.

I like seeing my kid treated exactly like the others in the room, whether that's being fed, bathed, read to, or disciplined.

I like knowing, really knowing, that my child will never be left alone, even if I'm not here. She'll have someone.

That's really all that's on my mind tonight.

We had a regular day, doing regular things.

I don't feel particularly funny or eloquent or strongly about any singular topic tonight.

And that's totally working for me.

=====

If y'all want me to expound on anything, speak up, 'k?

Before you know it, I'll be back in my weekly posting rabbit hole.

Giving In

2011-10-23T21:46:00.006-04:00

I was going to wait to share Playette's costume until later in the week, but then I saw this photo that was taken yesterday at the festival we attended.

Resistance was futile.

She's too stinkin' cute to keep secret.

Check out our little peacock/butterfly.

Sneak Peek

2011-10-22T21:48:00.005-04:00

We took Playette to a party today. It was free to military families and gave us an excuse to try out her costume, so we indulged.

It didn't end up being as fun as the flier indicated, but it wasn't awful and we got some nice family time in. I figure that's better than passing out on the couch while watching crap on TiVo/college football, which mayyy be what we might do most fall Saturdays.

I'll never tell.

I freaking love her costume. Love, love, love. I claimed it last year after a friend had it on her daughter. We're no strangers to going green with the costumes. A couple of years ago, that same friend passed the insanely cute Nemo on to us and then we paid it forward to another friend. This year's costume already has a home for next year and I think that's great. Too bad women don't share wedding dresses the same way. Imagine all the money saved!

I love saving money. I will talk to anyone anytime about saving money. Trust.

Anyway, here's your peek. More to come as the big day approaches.

Hint: She thinks she's a butterfly. She's not.

Girls' Night In

2011-10-21T21:04:00.005-04:00

BD went out to hang with some work folks tonight, so it was just me and the Littlest.

She ate spaghetti and then tossed some of it back up on the office carpet.

Good times, good times.

Thankfully, it got better after that.

There was some Dora watching and then I convinced her that a movie would be a good idea. She relented and after donning her pjs, we finally snuggled in on the couch and watched Tangled.

First magical thing of the night: She stayed awake the entire time, paid attention, and seemed to love it.

Second magical thing of the night: While walking her up to bed, she ALTERNATED HER FREAKING FEET ON THE STEPS!!! ALL THE WAY UP!!

Man, it's been a long time since we've have a bonafide big-ass milestone around here.

There's gotta be a technical term for this. Where's FNPT when I need her?

So I'm excited.

CAN YOU TELL?!?!?!?!

I don't really know how to calm down about this. I mean, I've never seen her do it. It's pretty flipping amazing. To me, at least. And that's perfectly ok.

I don't know when other kids do this kind of thing, whether they have 46 or 47 chromos, no matter.

BECAUSE MY KID.

SHE DID THIS.

TONIGHT!

All the while saying "left, right, left, right..."

Can you tell I'm proud?

I'm so stinkin' proud.

This, ladies and gentlemen, is what having a kid with Ds gets you...

Insanely happy.

Everything happens. Just in its own time.

More Buddy Walkin'

2011-10-20T19:05:00.018-04:00

On October 1st, we attended our very own local Buddy Walk. Imagine that, not having to travel by bus or plane! We didn't even have to drive more than about 10 minutes each way. Craziness.

It was the first day I remember really feeling like fall. And when I say that, I mean it was cold. I realized I had reached another weather milestone. Unlike when we were in The Land of No Seasons, it was going to go from oppressively hot to insanely cold. And I was going to have to learn how to deal with it. Bah.

I know. I'm a wimp.

So, yeah, Buddy Walk morning was brisk.

But it was gorgeous.

Playette got out of the car feeling nice and good.

She's on display, on display, on display.

We checked in, got our bag o' goodies and started with some face painting.

For some reason, Playette's ended up on her hand instead of her face. I'm not sure why I got hooked up and she didn't.

We didn't dwell on that mystery. Instead, it was off to the sidewalk chalk.

Not long after, it was time to start the actual walk. I really love the location of this Buddy Walk. It's scenic, central, and so many people come through there to walk dogs, have parties, work out, or to use the playground that I actually feel like that by having it there, some awareness is raised. People have to ask, "I wonder what's going on over there?" or "Who are all these people in matching shirts?" and I think that's really cool. I know that not every walk can be in a place like that, but it's nice that it can happen.

We did the mile-ish trek around the lake, checking out signs along the way that told stories of people with Ds of all ages. I had considered filling out the form so that Playette could have one, but I got a big, fat case of Something Shiny!Over There! and was distracted enough that I missed the deadline. Go, me.

When our loop was complete, we gorged on pizza and oatmeal pies.

Ok, maybe that was just me with the oatmeal pies, but still. Everyone else could have had some, too. They just need to learn to move quicker.

There was music throughout, with performances by cheerleaders and a dance team. We got to meet new peeps and spend time with friends. Playette also made sure to get her money's worth out of the bounce house.

Speaking of getting one's money's worth out of something...Sheree, if you're reading, please know that we squeezed every moment we could out of those shirts from last year. Both Playette and I were struggling to keep our navels covered. Now that's the mark of a good tee! Still useful and well-loved. We'll surely re-purpose those. Thank you, again. I wish we could be there with y'all again this year. Also? I totally wore those striped socks to the NYC Buddy Walk.

All in all, another great day. So great, in fact, that I came home and crashed for the rest of the night. Party animal. Woot.

Siblings

2011-10-19T10:12:00.003-04:00

Playette doesn’t currently have any, but there’s always a lot of really interesting discussion going on around me about how people of all ages (must) feel about having a sibling with Ds.

Some believe it’s the best thing that’s ever happened to them. They have joy beyond measure.

While others believe that it would be a pox upon their family for generations upon generations to even consider bringing a child with such a diagnosis into their home…for the sake of their existing or future children.

Personally, I haven’t ever felt like we would or would not have more children based on Playette’s diagnosis. It simply hasn’t been a factor for me. I don’t have expectations for another child of mine to one day be her caretaker, nor have I considered that having/bringing another child into our home would one day lead to resentment of either us or their sister. I don’t know if that makes me naïve or what. I’ve always - well at least after that first year of her life - felt that Playette would be able to one day do for herself. That’s the way we raise her. As if one day she will leave our cover and be her own person.

Shoot, we've got plans for 2025 and beyond. Grown-up plans.

Sometimes I wonder if other parents look at us in shock or disdain because we don’t do more for her, physically. As a first-time parent, I’m only doing what I think is best. Which means that I’m totally winging it.

So, yeah, I ask her to do as much for herself as I believe is realistic for her at that moment in time. Maybe one day I will discover that my expectations were too high. I guess I’m willing to take that chance. Again, it’s a personal philosophy based on how I, myself, was raised, combined with the input of BD, which is based on his experiences. Those were amazingly different, so we meet somewhere in the middle and have created The Smith-Smith Way. Which includes her taking off her own clothes and putting them in the hamper. You know, do as I say, not as I do. That kinda thing. One day, she's going to notice that I'm messier than she is.

But, I digress.

My point in addressing the sibling situation is that I wanted to talk a little bit about how this article made me feel.

In a nutshell, I liked it.

Even though, at age 27, Diondra is far from being Jamie’s older sister, as the article indicates.

Plus, a video would have been awesome. If anyone sees it somewhere, please let me know.

Maybe it’s because I’ve met them both (at different times) that I feel a teensy, itty bitty connection. It just feels like they have a great relationship and I love that. When we were in San Antonio last summer, I chatted with Diondra for a bit at the dance on Saturday night. I told her how I had seen her dance in his Blame It video and on an award show and she inspires me when it comes to thinking of my daughter’s future.

I remember how she placed her hand to her chest and lowered her head in that “Oh, stop, you’re too kind” way. After stepping away, I was told by a friend that she had been chatting with Jamie via Facetime on her iPad while he was in another country filming a movie. I remember wondering what they talked about. Was she telling him what a great time she was having? (Or that she was being stalked by this one weird mom, even?) Was he telling her to live it up and that he’d see her soon?

I’ll never know.

But what I didn’t notice was resentment or any sense of one being a burden on the other.

And I appreciated that.

It’s That Time Again

2011-10-18T08:56:00.003-04:00

I know it may seem early, but the hotel registration for the next NDSC Convention, to be held in Washington, DC, next July opened yesterday. I just booked our room. That’ll make four years in a row! (Sacramento, Orlando, San Antonio, DC-o)

So, trust me on this, you want to book your room(s) sooner than later. Already, the days are limited to Wednesday through Sunday. At least they were when I just was in the system. You may want to look into that further, especially if you’re planning a longer family trip to see all the sites and prefer to stay in a single hotel the entire time.

They are requiring a one-night deposit this year, most likely to keep people from booking and then canceling at the last minute as in previous years.

Bonus: It’s right by the National Zoo. Which is FREE, people. As all museums and zoos should be, said the girl from DC. There’s also Chipolte right on the corner. It’s a shame that I remember that, but still. There is.

So, jump on in! If you have a family member or friend with Ds, or you work/support people that have Ds, this is an overall great experience. There’s a TON of information and the general feeling of acceptance and being around thousands of people that “get it” is just…unmatched.

We hope to see you there!

Times Square Video

2011-10-17T20:14:00.003-04:00

I promised you a link and a link you shall have.

Here's a bit of what it's about, taken directly from the site:

"Every year, NDSS reminds the world in a big way about the gifts that people with Down syndrome bring to their communities through a special video presentation on a jumbo screen in the heart of the Times Square in New York City."

Click through for more details and to watch.

National Down Syndrome Society Times Square Video 2011

I tried to watch it again just now and I started tearing up. What is wrong with me?! I blame the music. I couldn't hear the soundtrack in Times Square.

Yes, I'm blaming an instrumental.

The video is about 19 minutes long. Our girl shows up at 8:35.

Life Snippet

2011-10-16T19:39:00.007-04:00

Me: (while braiding her hair before her bath) Do you know I love you so much?

Playette: Yeah.

Me: Do you know what that means?

Playette: Yeah.

Me: What?

Playette: (paraphrased) It's a song.

=====

This chick cracks me up.

While that's not what I meant because I was actually having a super mushy mama moment (where is my icy heart, anyway?), she's right about it being a song. I sing that to her a lot at night before bed. She loves it when I do.

Sidenote: I used to not like that song AT ALL. It's on this really annoying kid song cd that we have somewhere (hidden or lost, thank goodness).

But then, one day in the summer of 2010, on Lisa's blog, I heard her sing it to Sheridan right before he went in for open heart surgery and it totally changed my mind. Her voice and all the emotions of the moment replaced my memories of the other version and it came back to me with a brand new meaning. I actually wanted to sing it to my kid after that. So I did. Again and again and again. I don't think I ever told Lisa how much that touched me. Obviously, it did.

I Needed This

2011-10-15T10:24:00.002-04:00

Since (news flash!) it's Down Syndrome Awareness Month, there are lots of stories out there about people with Ds doing all kinds of things.

I think that's great.

But those aren't always my kind of stories.

I'm real wishy-washy on the homecoming court/non-defended touchdown type of stuff.

One video in particular that I saw recently, actually made me angry. Well, maybe frustrated is more fair. In a nutshell, it hyped the person with Ds up to be this amazing [fill-in-the-blank] and then when it was time to perform, I was confused, then disappointed, because what was promised wasn't what I saw.

I didn't think that was fair to me or the person with Ds.

I feel this way because I truly believe that people with Ds can do amazing things. Sure, maybe that person was having a bad day. That happens to everyone. But, if they're truly not THE MOST AMAZING WHATEVER, then let them be what they are. It's totally ok. No patronizing necessary. We're not all prodigies in everything. Shoot, sometimes I can't even walk across a room without tripping over my own feet.

So, in the vein of keeping it real, I give you...Addi. She's what I like to consider a breath of fresh air.

I had to come back and clarify my feelings for this video after reading Alison's comment. I can see now that I wasn't as clear as I could have been, originally.

Sharing

2011-10-14T10:16:00.003-04:00

It's nice to see a celebrity devoting some time and blog space to Down Syndrome Awareness Month.

I think that Tori Spelling's friend, Lisa, has a great attitude and I'm sure we'll hear more from her in the future.

Check out what she has to say, as well as pics of her cutie-newbie, Blake, here:

-->clicky clicky<--

Are you crossing the line?

2011-10-13T14:23:00.008-04:00

On Tuesday, it was brought to my attention that I may want to consider setting my DVR to record yesterday’s episode of the medical information show, The Doctors.

Why? Well, they’d be talking about people with Ds who choose to have plastic surgery to change their much more obvious facial features to those that were considered more subtle. The goal would be to not be immediately identified as a person with an intellectual disability and perhaps then be afforded more opportunities or maybe even just be treated more like the average 46er. (Guessing these people haven't see this video of a woman getting taunted and beaten, but I digress.)

Ok. I understand the premise. I’ve heard of this type of surgery before, but there’s not a lot of information out there on people that have actually had the procedure(s) done. This is possibly because many of the patients are minors and/or it’s done in secret as to not bring attention to a surgery that was meant to defray such attention in the first place. I do recall seeing an article about a little girl in the UK a while ago. That’s about it though.

Really, it’s not about whether or not I agree with what people choose to do with their, or their children’s, faces. It’s not something I would do with my daughter. I can say that. As much as I wish we could keep her tongue from protruding, I'd much rather continue Oral Motor Therapy than clip it. I just don’t see the point.

Which brings me to the show.

I watched it last night thinking that there might be an actual debate. I thought that maybe they’d shed some light on the types of procedures people are having done, what the “success” rate is, or whatever. I wanted, and expected data. You know, actual medical information from a show built on providing medical information.

Sigh.

Ok, so the topic of the episode was “Are you crossing the line?”. They had several different segments that addressed people’s controversial cosmetic surgery choices, the last of which being the one that addressed Down syndrome.

I admit, I rolled my eyes a lot. There was way too much clapping. There was no debating like there had been in previous segments. It just seemed like, once again, the argument was that people with Ds are perfect and we can’t even TALK about things the way that other groups can.

Their faces remind people that they are different and that’s necessary because otherwise they wouldn’t get the help they might need*. (thunderous applause) People with Ds don’t need to try to be “normal”; “normal” people need to get with the program and accept people with Ds just the way they are.** (thunderous applause)

*But what about all the people with varying disabilities that don’t have Ds? Should they change their features to get help?

** Ok, fine. Yes. But what about the people who don’t agree? Let’s hear from them. Are there people who had it done and are happy with it? Show me. Or what about random audience members who have no Ds connection? Would they treat someone differently if they looked different?

Even Dr. Sears, who has a brother with Ds, said that his parents considered the surgery at one point, but opted not to go through with it.

He then went on to say,““We talk about trying to create normalcy,” Dr. Sears says. “But with Stephen, we could make him look normal on the outside, but he’s not normal on the inside.” (thunderous applause)

Gag.

For a show that talks about Ds on occasion and has a sibling of a person with Ds on staff, you’d think that some People First Language would come into play. But, no. There was a lot of Down’s/Down syndrome babies/people this and that, plus way too much use of the word “normal” for my own personal taste.

Because, really, what is “normal”?

I learned nothing new from watching the episode so that was disappointing. Additionally, it felt very patronizing.

I’m not upset with the show because they chose to talk about a controversial topic. I mean, they didn’t even really dig deep into it or anything. Plus, they didn’t create the surgery; they just brought the information forth. But, blah.

I did enjoy seeing Gail and Blair Williamson on screen though. Gail was the catalyst for our participation in the I’m Down with You project and her son, Blair, is an accomplished actor.

I didn't think it was possible, but...

2011-10-12T20:34:00.009-04:00

It got better.

Just when I thought gymnastics couldn't possibly entertain me any more (see: "triangle roll" from last week), I paid the registration fee and we were promptly given this to change Playette into:

Sassy!

Wednesdays are hereby declared as the most awesome-est.

Dude. Seriously. Just for the uniform alone.

The Ride Home

2011-10-11T19:14:00.002-04:00

Today was unique in that BD and I didn't carpool. Also, I got to drive the nicer car. The one with satellite radio. That really, really helps with the commute.

And my swag. I am much more fly when I drive the car. It's been scientifically proven.

Before I got in the car this afternoon to head home, I saw that my friend had mentioned on Facebook that one of Playette's favorite shows was acknowledging Down Syndrome Awareness Month. I made a mental note to turn to Kid's Place Live as soon as I started my drive.

It doesn't bug me to listen to that station, even when Playette's not around. I've caught myself on a few occasions singing along before I realized that I, as an adult, did not have to listen to "Crayola Doesn't Make a Color for Your Eyes" for the 1700th time. Even when I have the option to switch it off, I sometimes stick around because, honestly, I kinda like it. Or, at least, I'm not horribly annoyed.

With that said, I was really anticipating hearing what the host had to say today of all days.

Right after I started the car, I heard her ask for callers who knew someone with Ds. Maybe a sibling? A friend? Or even yourself? What could you share with the audience about that person?

I figured I had a few minutes before the responses started coming in, so I switched to something more adult-friendly for a bit.

When I came back, I heard a little girl's voice. She was talking about her brothers. One of them with Ds.

What was most interesting to me about this scenario was that I recognized their names. And then I recognized hers. She was the daughter of my friend several states away. The friend whose announcement led me to turn to the show in the first place.

This little girl talked about what her older brother liked for a few moments and then she said something that has stuck with me all evening:

"He's the same and we love him."

I think that's what it's all about, peeps.

We're the same in that we're all unique. Every one of us brings something to the table of life. Whether one has 46 or 47, their life matters.

And we all need people to love us.

Thank you, Kit.

Take Two

2011-10-10T20:01:00.006-04:00

And here shall follow another post that proves that 31 for 21 doesn't have to include all Ds-related posts all the time. Because this one here? All about me.

Yes, again.

I'm pretty sure I only have 46 chromos, but no one's ever checked. Who's to say I'm not one of those people that doesn't find out until later in life? Ya never know.

So, today was one of those rare, awesome days that BD and I have off from work and Playette still has school. That almost never happens.

We got up and tag-teamed her right out the door before deciding that maybe a walk would be nice. And then when we were half-way home, I got the genius idea to...double the distance. Good grief. I just couldn't leave well enough alone, huh? It wasn't one of those situations where you could just change your mind mid-way either. I added a circle. A really, really big circle. With no short-cuts. One we started, that was it. We had to finish.

When we got home, I raced to shower because...

1. I had a massage appointment! Woohoo! It was the result of what I like to call the Summer of Groupon. I bought so much crap, I swear. And now we are in the Autumn of Using Everything Up Before it Expires.

Then I did something not nearly as fun. I went to sign Playette's IEP. Booooo. I got annoyed and kinda lost my zen-like state.

2. But then I went and got cookies! The local bakery that is known for its workforce of people with disabilities was right next door to the offices, so I just had to go. You know, in the name of Ds Awareness Month and all. I'm all about doing my part.

I got home and watched a little TV with BD, ate some lunch, and...

3. Went to get my hair done! (I hope you're all yelling appropriately when you see these exclamation points. This is exciting stuff.) The experience itself was less-than-awesome, other than the hair washing part - I love that, but the results were just what I needed. See, lately, I've been doing what I like to call the Lazy Brush-Over. I just kinda do the top of my hair. Whatever goes on underneath remains a mystery. Until I go to comb it and it takes 30 minutes of pain-inducing raking. It's a mess and I bring it on myself. With that in mind, I decided to get it temporarily straightened using a blow-dryer and scalp-scalding temperatures. I should have taken a before pic, but even I'm not that brave. Just know that it was an afro on it's best day and then remember all I mentioned about not combing it. Then make that picture in your mind 10 times worse. That was me.

And this is me now:

It's not flashy or glam, but I can get a comb through it. That's huge. And I'm good until it rains or I sweat. That equals about 12 hours, I'm thinking.

I attempted to have BD take the pics so it wouldn't be me doing goofy self-portraits in the bathroom mirror, but my husband and I had some creative differences. No worries. I love him for more than his picture taking abilities, thank goodness.

I still have my San Antoni-toes, but hey...I got a lot accomplished today. I'll get that pedicure in there sometime soon. That's a promise.

And I won't post pictures.

Well, maybe I won't.

Don't be mad. I have some pretty k-a feet.

Sunday

2011-10-09T20:38:00.002-04:00

Another glorious day here, weather-wise. I did my best to soak some of that up because, before you know it, I'll be complaining about the cold.

Auntie left this morning and Playette was none too happy about it. She had her backpack donned and was all ready to go with her. She wouldn't even say goodbye at first. Poor chile.

Shortly thereafter, I began the Quest of Failed Self-Improvement.

BD dropped me off at the hairdresser, but I got tired of waiting, so he came back to get me before I ever got started.

Later, I decided that maybe a pedicure would make me feel better about myself. So I drove to the shop only to find it was closed.

I am still just as much of a mess as I was when I woke up this morning.

In the middle of all of that somewhere, I decided to check in on the TMR boards.

Because, you know, it's been a while.

I don't know what I expected, really. I think that I'm probably still naive enough at times to believe that, generally, people are more informed. That, regardless of whatever choice they make for themselves and their family, they're doing it with the total of the info available to us in 2011.

Just so you know...that's not the case.

I read a lot of ignorant stuff today about children, people, with Ds. Stuff that people really and truly believe. Some of which was delivered to them on a silver platter by medical professionals so it must be true.

At one point, I looked up from reading and directed my gaze three feet down the couch at my daughter.

I wanted to keep an open mind while doing so.

I wanted to see if she was, in fact, suffering and maybe in my own selfishness I hadn't noticed.

I wanted to see if the feeling of her being a burden washed over me.

I wanted to check for every serious medical issue that some of those posters affirmed would occur with every single child with Ds ever born.

And you know what?

I just didn't see it.

I did see a four-year-old girl smiling back at me, in anticipation of whatever I might say or do next.

Her white shirt was stained by the red juice she had had earlier. Her socks were just begging to be pulled off and thrown on top of the shoes she had already discarded on the living room floor. She had an excited little bounce to her, as she usually does.

She was just the way I thought she was before I had started reading.

Happy and healthy and just where she belongs.

Auntiiieee!

2011-10-08T20:33:00.003-04:00

That's what's been yelled all through the house since yesterday evening when BD's sister arrived for a visit.

Playette could not be more thrilled. She gets a playmate and gifts? What could be better?

We went out to dinner last night and then, this morning, when Playette woke up...something was different.

BD and I were still in the bed. And we could hear her. But it didn't sound like she was next door.

Apparently, instead of providing us with her patented wake-up alert of "Mommy! Daddy! Potty!" she decided to quietly slip downstairs and wake her Auntie up.

Well. Hmph.

I'm ok. Really.

No, really. Sleeping in was awesome.

Once we were all up and dressed, we went grocery shopping in preparation for a fantastic dinner that I'm shocked hasn't put me to sleep by now. Barbecue ribs in the crock pot, jalapeno corn bread, pumpkin cupcakes. *swoon*

While everything simmered and prepped, Playette and Auntie battled it out on the living room rug.

After that, the grown ladies went for a walk to enjoy the gorgeous day we had here while BD stayed behind to yell at the TV some more and Playette took a short nap.

We were going to wrap things up with a viewing of Tangled, but...TiVo ate it. Or something. Not that we couldn't watch a million other things, but my heart was kinda set on that.

And, y'know, it's all about me. *eyeroll*

The Rest

2011-10-07T20:42:00.016-04:00

So, remember that whole trip to NYC for the Buddy Walk?

Well, when our fun-filled Saturday was over, we still had most of Sunday to spend in the city.

After, once again, housing the breakfast buffet, we headed out. We had decided that we'd keep the day pretty Playette-centric.

First stop, FAO Schwarz.

It was a long walk from our hotel to there, so it was a welcome surprise to come across a market all down 6th Avenue. We stopped at a couple of places, drooled over some of the food being sold (only not partaking because we had just eaten) and ended up with new sunglasses for the bigger two of us. Five dollar bucks for mine. And they're cute. Score!

We eventually made it. I was whooped. Playette was rearing to go.

Check her out. This makes me laugh. "Dreeessss. Dreeessss. Dress! Cheese. (strike a pose)"

I have no idea who taught her that little pointed toe move, but she likes it. A lot.

Once we moved past the dresses, I just kept the camera rolling because she was funny to watch as she explored.

Don't worry. I went back and put everything back.

When I found my fam again, they were here:

Playette and I got down to our socks right after this and did some horrible big piano playing of our own for a while.

We thought about purchasing the floor model for the low, low price of $250K, but decided that eventually owning a home might be the more fiscally responsible option.

We are such dillhole killjoys.

To get the festive mood back, we played around some more before heading over to Rockefeller Plaza to tour an exhibit on education...

(I couldn't resist the scramble board.)

...back to Times Square for a Thai food lunch, people watching...

...and, finally, the pièce de résistance:

My little cell phone camera does this lighted mammoth no justice. Playette was excited as we stood in line (translation: she thought she was too good to wait and tried to bust ahead) and quickly pointed out the car with "Lala" on it.

That stumped us. We kept looking and looking, seeing Dora, well, nowhere.

Finally, I spotted her. Way up at the top, in the tiniest corner of a Nickelodeon-themed car. I can't believe this kid is supposed to need glasses. She wasn't wearing any at the time. Hm.

So, lucky us, for the next 15 minutes, we got to hear "Lala! Lala!"

And of course it's first come, first served. You can't just want "Lala" and get her.

I felt really bad by the time we boarded and missed it by one. She had to watch "Lala" go round and round in front of us the entire time. Womp, womp.

BD and I were ok with what we got though. What self-respecting child of the 80s wouldn't want to rock the Mystery Machine?! I mean, really.

They got a really cute picture of all of three of us in the ride, but, uh...it would have cost more than our lunch so...sorry.

It was another great day. We left there, grabbed our bags from the hotel, I went to get some bagels to bring home, we boarded the bus, and actually had a really decent ride back home.

And that's all I have to say about that.

Now that's it's a week past our local Buddy Walk, I hope I can get that in sometime soon, before we head to our third and final for the year.

You Oughta Know

2011-10-06T19:50:00.005-04:00

I'm playing that song in the background as I type this.

I like lots of different types of music.

I didn't appreciate my kid this time four years ago.

Now I can't get enough of her.

I was afraid and couldn't fight through that or the sadness. For way longer than I even realized until after it was over.

I know now that I'm not alone in having felt that way.

I wish I had known then.

I hope someone else, who really needs to know, knows now.

I love the way that my daughter calls Dora "Lala" but then when you try to correct her and get her to pronounce it correctly, she says "d-d-d-d-Dora." It cracks me up every time.

I'm still not sure how I feel about going back to work.

That's not true. I know how I feel. I just don't know what I'm willing to do about it yet.

Now I'm listening to Kurtis Blow.

I love my friends.

I wonder what my mother would think of me today.

I really don't want to have to move again soon (destination: unknown), but I'll be more than ready to leave by then.

It's not the people, it's the place.

Except Sonic. And Chick-fil-A. And the beach. I like those parts.

I really, really don't like Facebook anymore. Surprisingly, it's not because of whatever changes they just made. I don't even really know what happened because I usually only check it from my phone.

I miss when people used to call me on the telephone. I actually like the telephone.

krlr, you should totally email me. My address is to the right of this post somewhere.

I really like beans but BD doesn't, so I had to turn my big batch into chili so that we'd both be happy.

That's love, y'all.

The New Definition of Wednesday

2011-10-05T19:50:00.002-04:00

In a word: Exhausted.

Hopefully, it'll ease up some, but today I am D-O-N-E.

For a couple of Wednesdays in September, I took Playette to a gymnastics class that I learned about early in the summer. Well, actually my friend B told me about the sign that she saw in her neighborhood and I gave them a call. Previously, they had hosted a Special Olympics Young Athletes (ages 2-7) class and I wanted to know if that was still available.

While I am totally on-board with inclusive practices, I am also realizing that certain adaptive activities certainly have merit. I'm all about having options, y'know? I like the ability to make the best choice for my kid. When people take that away from you? It's called discrimination. And I kinda have a problem with that.

So, add that to the fact that the Young Athletes class was free and I was sooooo in.

Except it wasn't going on anymore. Boo. Not enough participation, apparently.

But the lady was really nice and told me that she wanted to work with children with special needs again and that she'd make a decision by the time school started. When she did, she'd call me back.

And she actually did.

Not going did not feel like an option.

Add to that the fact that she comped September as a trial and Playette loved it and...we're now a gymnastics family.

It just makes for what currently feels like a really long day.

I haven't been sleeping well this week, so when we got home after five, BD and I rushed to figure out what to make ourselves for a later dinner while thanking the babysitter profusely for taking on the task of feeding Playette something extremely quick and nutritious so that we could get back out the door in time.

I've been late to this class once already. I don't want it to happen again.

The instructor is Bela Karolyi-esque. She doesn't mess around.

So with the rushing and the cooking and the eating and the actually having to participate in the class to help Playette and the non-stop yawning and then home, bath, and bed...I am so ready to eat and pass out myself.

Tomorrow will be quieter.

And our Littlest loves the class. She's about as graceful as a rhino and she rolls like a triangle, but we're all smiling throughout, so I call it a success.

Mama's Little Techie

2011-10-04T21:29:00.006-04:00

We pondered the iPad thing for a long, long time.

To get or not to get?

I mean, I knew it was helpful for a lot of people, kids included, but let's face it...it's an investment. And Playette is four. And four can be quite destructive.

Once I realized, though, that this would benefit all of us and her educational apps would just be a really nice bonus on top of a pretty cool gadget, I relented.

And then, because I'm super tight with a dollar, we still waited a long time after that before actually taking the plunge.

I must say, I like it.

Mind you, both BD and I have iPhones and we have plenty of fun/educational stuff on those for Playette to partake in, but the larger screen? Eeeeeee!

Still totally a want. I get that. Trust.

But check this out.

I've loved this app since seeing Miss G show her stuff in a video that my friend Tricia made. Playette gets a real kick out of it, so of course it was transferred over promptly.

Check out how she signs and just really enjoys herself while playing.

(Really, anyone know if she's signing "flag" and "pumpkin" here or is it something else entirely? I know she threw deer in there when she saw the picture of one, even though it wasn't the word that was requested.)

If it weren't for this experience, I don't know that she'd currently recognize items like "harp" and "globe" and some of the other truly funky non-kid-ish words in the program that are totally escaping my brain right now. I mean, I know she'd get them sometime, she just wouldn't have them right now.

And her exclamation of "Awesome!"....Oh Em Gee. Love it.

By the way, it's the Receptive app under Kindergarten.com

If you have other apps that you recommend, I'd love to hear about them.

=====

You know what? She may actually be signing "Hopkins", the name of the frog from Signing Time and not "pumpkin." There's that rhyming thing again!

Buddy Walkin': NYC Part II

2011-10-03T16:51:00.009-04:00

First off, HI, ZOE!

Or do you spell it with a "y"?

If so...HI, ZOEY!

Zoe(y) is the nice lady we meet right after walking up the hill to the lovely home base of the NYC Buddy Walk and wandering just a bit. She was there as a volunteer, meant to assist folks just like us who needed some direction.

But what was so unique about this direction-giver is that she recognized us.

Wha?! Little ol' us?

Yup, Zoe(y) reads along here and I really wish I would have taken more time to talk to her then. Since I didn't, I hope this salutation helps to show that you're appreciated. Thank you not only for joining us in our journey, but also for all you do to support the Ds community.

Pretty quickly after that chance meeting, we were able to get all registered and shirted up. The six of us were all part of Team Signing Time, so that meant Playette got to meet up with her idol right away since it was almost time to take a group photo.

They are just too cute.

We even had the good fortune of meeting Rachel's family. Here's Playette with her three daughters, Laura, Leah, and Lucy.

The look on The Littlest's face is her realizing that she's not, in fact, Signing Time's one and only love.

Playette followed Rachel/Signing Time around a lot. So much so that by the time we looked up (and had finished some popcorn and cotton candy, natch), we had missed the start of the actual walking part of the walk. So, the group of us rushed over to the starting point, hoping that we'd figure the path out somehow. Good thing it didn't turn out to be too difficult after all. Plus, the mob moved slow enough that we caught up pretty quickly.

I loved taking in the sites of Central Park. All of the runners made me want to run. It's just such a pretty place in the middle of the big city. It's hard for me not be awe-struck at least once during every trip.

BD was carrying Playette in a backpack while we strolled and she made good use of her time by passing out about 3/4 of the way through the loop.

She woke up in time to get her medal at the finish line though. Check her out, nice and refreshed!

Which was a good thing. Because it was time for the Signing Time performance.

It was wonderful, as expected. Rachel even called out to Playette a couple of times from the stage, which, surprisingly, didn't make her head explode right then and there.

She did have the idea, though, that she belonged on that stage, so I had to go grab her back from trying to do just that at least twice during the concert.

Leah performed with Rachel for most of the show and then Lucy came in for the last song. Which, um, had me bawling.

Couldn't. Help it.

Great, great, great time. We enjoyed it so much, we already have plans to see another concert again very soon.

To keep the momentum going - I think we were all ready to celebrate that the promised rain failed to make even a teensy appearance - the DJ got to work.

My girl loves to bust a move. It's almost like she's challenging BD to a battle at one point in here.

There was lots more move busting and snack eating before we realized that, as usual, we were among the last people there. We know how to shut down a party, yo. We left to the sound of balloons being popped for clean-up.

The rest of the evening was spent noshing on noodles here and slurping on sundaes there.

We even had a Nina Garcia spotting.

All in all, a great day.

Thank you so much to the SkaSka's for joining us!

Oh, by the way...

2011-10-02T21:13:00.001-04:00

I promise to post the follow-up to the last post tomorrow, but I wanted to say a couple of other things first. Before I forget. As I am prone to do.

1. Have any questions for me about life with Playette? Down syndrome in general? Virtually anything? Please don't hesitate. Ask! I'm pretty transparent. And chatty.

2. Feel inspired to share some thoughts with everyone? In past years, I've welcomed guest posters and this year will be no different. So, if you've learned something here or had some kind of flipping epiphany? Tell us. Shoot, I'm curious.

3. I'd love to hear from more of you, in general. No full post required. If you're a more silent follower, please consider letting me know this month that you're out there. Just pop your head in somewhere or wave your virtual hand in the air. I'd love to know your here and maybe find out a little more about you.

I think that's it for now. I need to take my tired self to bed. I think I'm grown and called myself going to the movies with BD. At 7:15 pm. On a work night. I must be nutty. We even stopped for a bite to eat.

Party animals, I tell you.

I'll be kicking myself in the morning.

Buddy Walkin': NYC Part I

2011-10-01T06:45:00.011-04:00

Oh, yes. It's me again. I'm ~~crazy~~ back.

This whole working in an office - well, hopefully untainted trailer - thing? It's pretty draining. And hostile. But that's a post for another day.

And days are something I have plenty of, actually.

Because it's October.

Yes, already!

Today marks day one of Down syndrome awareness month.

And with that comes one of my favorite ways to celebrate and advocate: 31 for 21.

Grab This Button

I've been doing this for a while now. I'm thinking since I started blogging back in 2008. The way it works is that I, along with many other bloggers, commit to writing every day in October (31 days) in a show of solidarity and support for those with Trisomy 21 (Ds results from having three of 21st chromosome).

If you're interested in joining in, go see Tricia and sign up. You only need a blog, not a direct connection to Ds.

Even though if you're reading here? Allow me to be your secondary connection. I've checked with Playette and she's cool with that.

LEZGO!

So, my first post is so late. Of course. But right on time for this effort, which means my procrasti-fatigue paid off in a way. I kept meaning and meaning to write, but with so much to say and photos and videos (which you all totally deserve after a pretty desolate September around these parts), I knew it would take time that I just didn't have.

But I got up early today. Just for you. We have our local Buddy Walk this morning, but there's still plenty of time before that. I went to bed at like 9:30 last night so getting up at 6:30 felt like sleeping in and that I better go do something productive already.

Since milking a cow was not an option, here I am.

Last week was an adventure. For anyone that follows me on Twitter, you got a bit of a participation explosion from me last Friday night. Why?

BECAUSE I WAS ROTTING ON A BUS!

What seemed like a semi-good idea in the beginning turned out to be a version of torture for me. I mean, logistically, it made sense. We wanted to go to NYC for the Buddy Walk. Rachel Coleman was performing.

[I kinda like seeing my kid lose her ish for Rachel. And then when she gets extra-stalkery, I have to step in, but still. She loves her some Rachel and Signing Time.

Actually, she doesn't call Rachel by name anymore. She calls her "Signing Time." Which would be rude if it wasn't so damn funny to watch her do. Actually, it is still rude, bur Rachel's very, very cool about it.]

Since moving from California, almost anywhere on the east coast seems close. Because we're not a country away from it, right?

NO.

New York is not close. Trust me. And the drive to get there from here is painfully boring.

And that's why paying someone else to drive us there sounded positively brilliant! Because, hey, we'd leave at midnight, a mile from our house, we'll save money in the end between gas/tolls/parking/wear & tear on the car, we'll surely just wake up, fully-rested, a few blocks from our destination. What could be better?!

The answer is: a plane. A plane would be better.

A plane doesn't take 6.5 hours. A plane would have only cost $30 more per person. A plane doesn't freak you out by taking you the wrong way in the middle of the night. A plane doesn't make that rumprumprump sound that scares you out of your 3 minute nap because the only time you should hear that is when approaching a toll or running off the road and YOU'RE NOWHERE NEAR A TOLL BOOTH!

Yeah, I was grumpy. And because the last rider had spilled coffee in the seat next to BD, Playette was with me most of the time and she was a slightly less than stellar riding companion. Apparently, between the two of us, one of us needed to stand watch, so, as the "adult", I took one for the team. Yay, me. With no sleep, I was a flippin' peach when we finally disembarked in front of the peep show behind Old Navy.

Classy, I know. You're totally jellus.

I must mention the other reasons we decided to go. Some of our friends have an 18-month-old who also loves Signing Time and since they live in NY, we'd be able to enjoy the day with them. Plus, Central Park just sounded like an awesome place to have a Buddy Walk.

Aaaand, Playette's picture was chosen for the NDSS video in Times Square.

Had to be there. Had to.

Don't know about the video? Here's a clip from the official press release:

"The photo...was selected from over 1,200 entries in the NDSS worldwide call for photos. Over 200 photographs will appear in the video, which will be shown on the larger-than-life MTV plasma screen, located in the heart of Times Square."

Yeah, we had lots of reasons to go.

And, honestly, after that bus ride, things got much better.

We got our bags and walked the short distance to the hotel. Playette was thrilled to get her land legs back and had a ball zipping down the clean and mostly-empty city streets. She did find it necessary to point out to me the people that were sleeping though. I wasn't quite ready to explain homelessness.

When we got to the hotel, they had a room ready (bless them!) and extended the breakfast buffet to us (totally not required, but greatly appreciated). Grateful, we hustled upstairs and took naps before waking up, getting dressed in our gear courtesy of Sheree, housing the buffet, and walking to Times Square.

When we got there, we immediately picked out our peeps, posted up underneath the large screen with the gold frame around it that reminded me of the mirror my mother loved so much when I was in high school and college and that I kept in my own home for many years.

Yup, right between T.O. and LaLa. That was the spot. Superstah!

I took that last picture on Sunday though. Because on Saturday, I was too busy running my mouth to all the people around us like Ben's family, out celebrating his first birthday in full force, and Jewel's whole group of Gems. They really came out to represent for those kids and I loved seeing how much support they had.

I'm doing some thinking right now and choosing not to write it for the world to read, but if I didn't write something in this space, I'd be mad at myself. Infer whatever you wish. How's that?

Anyway.

The video lasted about 20 minutes and Playette showed up right in the middle, with her cute self. I was riveted the entire time because I could not, for the life of me, remember which photo I had submitted, so I was freaking out that maybe I'd miss her. Really? I thought I wouldn't recognize my kid? I'm such a wack sometimes.

When the video is available online, I'll share the link.

If my mother were alive, I probably would have gotten popped right in Times Square for submitting a picture of Playette sitting so unladylike. Oops. Still adorbs though, right? I promise to keep her out of clear heels, 'k, Ma?

Our friends arrived just as the first showing of the video was wrapping up, so we watched the second one, too, before heading to the buses that would take us to the main event.

This seems like the perfect place for a cliffhanger, soooo...

Stay tuned for Part II!

And, if you're so inclined, any donations to any Buddy Walk are tax deductible. If you go to one in your area, let me know. They're fun. We went to three last year and will do the same this year.

If you work for the Feds, both NDSS and NDSC are listed to receive CFC contributions.

Sometimes

2011-09-20T19:32:00.002-04:00

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?

For My Next Trick...

2011-09-09T20:23:00.007-04:00

I've been quiet again, for good reason.

It's not that I try to be busy. Or that I'm looking to win the Craziest Life Award.

Really, I'd be ok with a little boring normalcy, trust.

So, today, I finished my second week at work. I can't really say second full week because week one got a late start due to the hurricane that came through this area and then week two started with a holiday. Add to that the fact that we got out early last Friday and I had to take off at noon today and I'm really not looking forward to the whole five-day, forty-hour work week thing.

To back up a little bit, after the earthquake and the hurricane (we evacuated for 3+ days, but our house was pretty much untouched), I started work and then BD left for Norway.

Norway.

Like, 6-hour time difference Norway.

I have been one super-tired mama.

School did start in the midst of all of that, too, but since we decided to keep Playette at her current school full-time and out of the district entirely, it truly felt like any other day. I really did think about the whole cute outfit and picture thing, but, yeah. That didn't happen. It was more like, "Pre-K! Yay! Ok, see you later."

BD got home late last night. I know this because at some point, I woke up gasping for air, in a state of fear-shock because someone was in my bedroom, and about 10 seconds later, I recognized him.

It was a long ten seconds.

I was really out of it though. I had been feeling bad for about 24 hours at that point, so I think I grunted my muted version of "Babe, I missed you soooo much! Welcome home! Muah, muah, muah!" and went back to sleep.

We talked some in the morning, but not much. I was rushing and he was getting Playette ready since he didn't have to go in to work.

That. Felt. Awesome.

Having help, I mean.

I had missed my parenting partner and dreamed of what mornings would be like with two of us to split the workload.

Anyway, I went to work, suffered through the morning, and finally realized that what was going on with my body could be classified under Not OK.

I drove myself to the urgent care down the street and by the time I got there, I was walking lopsided. When I got to the desk, I broke down in tears.

That was a very bad idea.

Because the stabbing pain in my chest then got way worse and I couldn't breathe or talk.

That's one way to skip the line.

Not that there was one, but still. I had kinda made myself top priority, regardless.

Diagnosis: Walking Pneumonia

This really hurts, yo.

I'm down for the weekend.

Let's hope that's it.

The killer irony in all of this is that I've been placed in a trailer at work for the next year during a remodel. I've been smelling an odor in there and inquired about it right away, based on my past upper-respiratory issues and all I've heard about these things being death traps. I told my boss yesterday that I wasn't meaning to be a pest right out the gate, but that it would really suck if I started getting stabby chest pain and ended up out of work for a week right away. I was poo-poo'd because, you know, Air Quality Tests cost money, and told to come back to them if I had symptoms.

That last convo I had with someone in an official capacity about the topic was this morning.

Right before I left for urgent care.

I think, come Monday, I win.

How bad, exactly, would it be to quit before I get my first check?

=====

And, before I totally forgot, another one to add to that last post: I love how Playette sings and signs songs on the radio. It's super cute. But the one that's currently slaying me is a less-pop'y tune, her old standby fave. When she gets to the third line, she signs it like "Happy Birthday deer _________."

When those two hands go up to her head? Hilarious.

Not that I can laugh right now. Or cough. Or move.

Back to sleep I go.

=====

Oh, and thank God, again, for ASL. It hurts to talk so I'm signing more. What's funny, too, is that BD had to use Playette as an interpreter this evening. I signed "hurt" and he was all, "huh? help?" so I finger spelled "H..." He says, "F?" Oh jeez.

My baby saved me.

I Don't Trust My Brain

2011-09-05T08:50:00.005-04:00

So I'll place this here to remember...

I love the way that Playette creates her own signs for people. Unlike typical names signs, given by someone who is deaf/hearing impaired and based on a characteristic of the person being "named", hers are almost rhymes instead.

Her former babysitter, Christy, became "Thirsty." Even though she can say something close to Christy, she'd also sign thirsty while saying it.

That was the first time I recall her doing that with names. She would substitute rhyming-word signs from time to time if she didn't know the appropriate word, and once she used a homophone (principal for principle), but the name thing really intrigued me.

These days, she consistently uses the sign for "pretend" when referring to our friend, Jen. I guess she figures it's close enough. It really has nothing to do with anything Jen has ever done to or around her.

One day, a few weeks ago, after a day spent out with BD, I asked Playette what they did. She signed pretend and baby. I then asked BD, "Did you go to Jen's and see the baby without me?!"

That they did.

Which is really cool, I think. (Not that I didn't want to see the baby.) She's communicating in a way she never has before.

Her new buddy, K, has been assigned the sign for pillow.

I'm actually thrilled to have figured this out, finally, because I could NOT, for the longest time, figure out why she was signing pillow so much.

Yesterday, while talking to BD, I asked Playette to tell her daddy what we did the night before. She signed pillow and ice cream.

Yup, we went with K and his mom to get frozen yogurt.

Now, she is babbling all through this (or is "using jargon" more appropriate?). She's not only using the signs, but also speaking. I just can't always understand her 100%. Some words are clearer than others.

Hopefully, one day, we'll get Speech Therapy again and maybe some help clearing this up some will follow.

But, in the meantime, she's getting her point across, and using her brain in creative ways, and it's awesome.

=====

Oh! And before I forget this one, too, I love how she signs cat for her great-grandparents' dog, Pepper. She'll say Pepper and knows for a fact that Pepper is a dog. She's not confused at all about that.

It's just that Pepper is a schnauzer with a hairy face that reminds her of whiskers.

Like cats.

BOOM!

That there is the sound of synaspes firing.

And thennnn....

2011-08-25T09:12:00.005-04:00

1. Ok, so she totally came home with a huge whole in the side of her brand new dress. I wasn't mad, but damn. Was she trying to ruin it just to make me look foolish?

Totally fixable and probably wouldn't even be noticeable if it were sewn by anyone other than yours truly. Me? I'll probably make a mess out of it using a hotel sewing kit.

2. Thank you so much to all who left comments on the behavior situation. It really means a lot and I find your feedback helpful. Just knowing that I'm not alone in this is huge.

That reminds me of something..."behavior" was a topic that was never addressed in the sharing session of moms of 3-5 year-olds at the NDSC conference. My biggest gripe about the weekend was that time period. We essentially spent the entire 1.5 hours introducing ourselves, which helped no one. Wouldn't it have been great if this type of thing could have been explored instead? Or any of the other 15 or so things that people said they'd like to talk about? Ugh.

I think it's important that when we have golden opportunities like that, with just us moms (not friends and therapists, like what they allowed this past time - no offense to the supporters), that we seize the chance to talk about the real stuff, the nitty-gritty, the "my special angel isn't acting like such a special angel anymore and I'm no longer feeling like such a special chosen parent to my very special kid" type stuff. (gag @ all the specialness of it all)

We all know that we all love our kids. If we didn't, chances are high that we wouldn't even be at an event like that, y'know? We probably don't need to spend the entire time telling each other that we love our kids.

Obviously, I'm frustrated. It feels so big right now that we missed it. We really missed it in that room that day.

I'm thinking of all the other moms who left that room not getting what they needed, moms with issues that might have been more hearty than my own, and it's breaking my heart.

When are they going to get their chance? Do they spend another 1, 3, 30 years feeling like they're failing?

I hope they're able to find the support they need.

Thankfully, I have you all.

3. And, uh, the weather and seismic activity around here is pissing me off because I don't know how to deal with it. Especially not all at once.

When More is More

2011-08-24T12:06:00.006-04:00

Today, the Littlest decided that she'd spice it up a bit.

Maybe she's trying to remind me of what things will be like for me when I go back to working full-time outside of the home next week.

I pulled a new dress out of her closet this morning for her to wear. It was one of those moments where you have to weigh out the pros and cons...

Yes, if she wears this, it may get messed up during the school day.

But, if she doesn't, it may end up being one. more. thing that gets outgrown with the tags still on it.

I threw caution to the wind. We'll see how that turns out.

But here's the thing, much like the participants in any number of makeover shows, once she had that new dress on, her whole demeanor changed.

She went into her closet and grabbed her laptop.

Then she went into my closet and snagged a purse.

Partner those with her (old) glasses and she was ready to go.

I hope that I'm half as put-together on Monday.

=====

I cried at drop-off today. I couldn't help it. It was just a few tears, but I couldn't hold them in.

The teacher, who I appreciate very much, was telling me about some of the behaviors that Playette has been exhibiting lately.

Now, I had heard the other teacher mention some things yesterday during pick-up, but I think she was trying to spare my feelings a little too much and kind of acted like things weren't as bad as they are.

The morning lady (they work together in the room for most of the day) was a little more blunt. Which was fine. It's just that I guess that I've been living in a bit of a fantasy lately. I mean, I have this kid who has been just...nice...for so long and hearing that she's pushing and hitting other children? Ugh.

I understand that her chronological age does not match her developmental stage, but still. I thought we got the "terrible twos" thing last year. Apparently not. That was just a preview. She's exhibiting that sort of behavior now in the classroom and I realize that I'm not taking it well because I really, really want her to just be.

Do you know what I mean?

I don't want her to stick out (more).

I don't want her to become a problem.

I want everyone to wish that they had her in their classrooms.

It's that thing about being different already and not really wanting to give her the leeway to be the same as other children in that kind of way.

While it's fine for any other child to have behavioral issues attributed to the stage they're in, for a kid that's already set apart, it's just another strike in my mind.

It's kinda like me not being able to be relaxed in college about breaking a rule....there was no one that anyone could confuse me with as I was virtually the only Black female for most of the time I was there.

So, yeah, it's deeper than "we don't hit" for me.

It's more like, "Please, baby, be nice to your friends today, ok? Be on your very best behavior, alright? Look at me. Can you do that for mama? Please? No, really, I'm serious. Look at me. Do you understand? We're nice to our friends. Hands are not for hitting. Let's use our words today. Look at me. Tell me you understand. Ok? Can you promise me that you'll be the best girl today?"

Ugh.

That is so unfair. I know that.

But that's real life.

Snippets

2011-08-23T12:12:00.007-04:00

I believe that I owe you all another video. Not that anyone's asking for one, but I kinda prefer telling the school stories "in person" now. That saves me a heck of a lot of writing, for one. Yesterday and today, there were some new developments. And I'm proud of myself.

=====

On Saturday, I had a commitment with the Navy Reserve. As I've mentioned before, this is not a frequent occurrence, but this summer, there seems to be a lot more going on than usual. In fact, I have meetings this coming weekend as well.

So there I am, early in the morning, putting on my khakis, and Little Miss Possessive herself (no, really, she doesn't want servers to take away our plates, people to come too close with their carts in the grocery store, or luggage handlers to take our bags in the airport) starts giving me the "No! No! No! No!" complete with hand gestures. I'm wondering what in the world I've done to get this treatment and then she says, "Daddy's pants!"

Ah, yes. Of course. She thought I was stealing her dad's clothes since this is what she always sees him wear and never sees me wear.

Smart kid.

=====

We went to the ENT last Friday for a follow-up to the sleep study. Apparently, her episodes were extremely insignificant. No T&A or CPAP for her, for now. We go back in December.

That reminds me. It's about that time to start scheduling the next round of appointments. We haven't been to the Cardiologist since moving here so I think that visit should get some priority. Hopefully, it'll be just as uneventful as our past visits have been. But it is always nerve-wracking to go to someone new. Who knows if they'll agree with the other doctors? What if they want to do something we're not expecting?

Ugh. Why did I just go there? Borrowing trouble.

=====

Playette got new glasses when we were in San Antonio and the lenses are finally in. So stinkin' cute. I like them so much better than the sports goggles on her. I guess now you want a pic, huh?

All the ones I have in my phone are blurry. I'll work on getting a clear shot posted soon.

=====

In the meantime, here she is this morning, sans glasses, after deciding that she was more than ready to head out to school. She grabbed the garage door opener and the car keys, along with my sunglasses that she promptly placed in the headband position. Good thing I was right behind her because the garage door was up and she was out and at the driver's side door in no time. I guess she thought she'd do the driving today.

Monday Night Football

2011-08-15T20:43:00.006-04:00

BD may be in the living room checking out the pre-season game, but I'm totally getting a kick out of watching this instead:

I love how he tells her to "rub some dirt on it" regarding her "injury."

No wonder she's a brute!

Goings On

2011-08-12T13:17:00.005-04:00

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.

=====

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.

=====

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.

=====

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.

Updates & Stuff

2011-07-29T08:22:00.004-04:00

I finished Insanity on Tuesday. I wanted to make a really big deal about it and shout it from the rooftops, but since I'm not sharing pics, I figured I'd hold back some.

I don't know if I didn't think I'd make it through to the end or what, but for some reason I never took before pictures so that I could make a comparison. With my body, I think comparisons would be necessary since the changes are pretty subtle.

So, yeah, no flashing of the belly on the interweb for me.

BUT! It went well, overall. The plan is 63 days and I was pretty diligent. I followed the calendar as closely as possible, taking one week off for an unrelated back injury and another couple of days for a sinus infection. I started on May 16th and finished on July 26th.

I got my butt kicked, in case you were wondering. I feel stronger though and I'm a lot more confident in my bathing suit. I consider that a mission accomplished!

Oh, and at one point, I had lost like 7 lbs, but our whole Season of Celebration in June/July took care of that. I pretty much broke even in the weight department.

Now, I'm trying to decide what's next. I haven't done anything ~~but eat Chik-fil-A and Blizzards~~ since Tuesday and I'm starting to feel antsy. I signed up for two races this week, one in October and the other in December, so I know that running needs to come back into the picture very, very soon.

=====

I went to look at a private school for Playette yesterday. The wind was kinda taken out of my sails. After the one-hour tour, I informed the lady that the kidlet has 47 chromos and I saw her face change. The smile remained, but if you've been in that situation, you know what I mean. In her eyes, this was not awesome news. She proceeded to ask me questions about the closeness of Playette's development to her typical peers. She told me that they don't have the staff to support her if she requires one-on-one instruction.

What is up with this whole "one-on-one" thing?! That's the same thing her jackhole teacher said in out last "meeting." I'm starting to second-guess myself. Does my child need a shadow 100% of the time? Am I being unrealistic?

The lady did say that they'd "be willing to try anything." Which, yay? I mean, my kid is a kid, not a monster. "Anything" kinda alludes to her being the worst of the worst and they're doing us some sort of favor.

Grr.

Maybe I'm just being way sensitive. I also recognize that I went in with really high expectations after another parent told me that her kids (one with Ds) have gone there for years and they were excited for the opportunity to work with Playette.

Maybe something changed?

So, yeah, since I haven't heard anything back from the school district, I'm making moves to set something private up. I mean, what else can you do? What they're offering just isn't good enough and, as many people as I've spoken to, it just doesn't seem that the program I requested can ever be a reality. Deadlines have been missed. Which, don't get me wrong, IT PISSES ME OFF! They passive-aggressively allowed this to happen and that doesn't escape me.

But at the end of the day, I will not allow my child to suffer because of their ignorance.

Now I just need to find the right place to pay to teach our child.

And hopefully treat her humanely.

Time's Up

2011-07-26T07:42:00.004-04:00

I've been a SAHM off and on since Playette was born.

I had always planned to stay home with any small children I might one day have. In fact, that was one of the things that I asked when BD and I were dating. "Would you be ok with me staying at home after any children are born?"

Well, actually, what I may have really said was, "...after we get married?" but he gave me the side-eye to that one and I figured that wasn't going to happen.

After Playette was born and we received her diagnosis, things got murky. I didn't want to go back to work, but not because I couldn't bear being away from my child. I absolutely did not have one of those bonds with her that you always hear about. I don't recall ever telling anyone that "I've never felt this type of love" or any similar sentiment. She was my new job. She needed things and it was my duty to get those things done. She wasn't really a burden to me, but more of an obligation. Certainly not the baby that "made my heart swell so much that it was going to burst." Or something along those lines.

I really wish I had felt that way though, y'know? The only tears I shed were ones of worry and guilt, not of happiness.

But, anyway, after about 8 months and a cross-country move, I went back into the workplace. That was early 2008. I stayed there until I went into part-time status last summer, right before BD deployed. By October, I was done. I started using my banked up vacation hours until December. Then it was time to move again and I figured that we'd get settled and I'd find something to do here. Certainly, there'd be a wealth of opportunities and I'd find the right position quickly!

Except no. It didn't happen like that at all. It was long and drawn-out and frustrating. BD would remind me that he wasn't pushing me to go back, but there was something in me that said it was time.

I mean, I get a lot done during the day at home, between appointments and phone calls and emails and meetings and sometimes laundry, but, overall, I'm not awesome at it. Dinner isn't always ready on time. Plenty still goes un-cleaned. Playette isn't excelling at all numbers of things because I'm spending time stimulating her brain with projects and books and flashcards.

It's just not what I expected from myself. I'm not meeting my own expectations.

I know, I know. I could lower them. Surely, I'm not being realistic with trying to put myself in the Supermom category.

But I still feel bad about it.

And I miss having grown-ups to talk to.

I miss being good at something.

And I'm tired of worrying about money. Even if it is just in my own head. I do though. I worry A LOT.

I had an interview a few weeks ago and the offer came in last Friday. I agreed to it and about a month from now, I'll be heading back into an office.

What have I just gotten myself into?

I guess we'll see.

I've got a lot to do between now and then.

Results

2011-07-22T15:22:00.002-04:00

Remember the sleep study?

I (finally) just got a call with the results: Mild Obstructive Sleep Apnea.

The first available appointment was about a month from now. I snatched it up and put us on the waiting list for cancellations.

So, for those of you that have been there/done that, was "mild" enough to bring on the T&A surgery? Is really funky recovery breath possibly in our future? Or are there other approaches that you've witnessed?

Because I Promised

2011-07-21T22:03:00.003-04:00

Here goes nothing.

I can't watch these or else I know that they'd never get posted because I'd pick them apart forever and end up writing myself a script instead and then that would take too long so I'd end up forgetting altogether and...yeah.

BTW, I did these on my phone. You may need to tweak the volume some. I was working my ~~sexy~~ sleepy voice.

Loose Ends

2011-07-20T08:34:00.004-04:00

Ugh. So maybe this is why I don't have a bazillion followers...I am THE QUEEN of not wrapping up a friggin' story. That has to be annoying.

Yeah, so last year I dangled stuff about our very interesting Costa Rican vacation. Several times. Did I ever post about it? No.

And, more recently? The stuff about being visited by Beth and Hannah? Yup, dropped that ball, too.

Oh, and I know that at least a couple of people are wondering about our situation with the school district and placement for next year...the truth about that is that I can't even bring myself to type it out. It's painful and I swear I can feel my blood pressure increasing every time I think about it. I have a physical this weekend, so I really need to stay sorta calm before I get kicked out of the reserves.

But I promise you this: I'll talk about it. I just won't write it out. That should at least be quicker to do and thus have less of an impact on my body. Right? Let's hope so.

So, a vlog it will be.

Just give me a chance to brush my teeth, shower, comb my hair, and figure out the stupid camera, k?

This may take a while.

Someone slap me if I show up with lip gloss on and freshly threaded eyebrows. Because that is not real life. I'm just trying to hold myself accountable here.

=====

Oh! So if there's anything else you'd like me to wrap-up, please let me know. Any other questions are cool, too.

Teeth Update. Yes, Again.

2011-07-13T08:01:00.007-04:00

Ok, so if you've followed along on this saga, you're well aware of my obsession with Playette's teeth.

Just like the scary book said, they have come in out of order, misshapen, and delayed.

I guess that book was right about something after all. Maybe I should go back and read it now that I'm not a complete basketcase like I was around this time four years ago.

You know, that book should come with a warning label:
Not to be read until you know your kid as a person first.

Or something.

So.

Anyway.

The teeth.

She's been missing two on the bottom for a long, long time now.

Things I've read said that children with Ds could have baby teeth come in up to age four.

But is that like 48 months or 59 months and some change?

They don't say.

Ugh.

Actually, I just went back and checked and that source says that the first tooth can come in that late. It didn't mention how long it would take to get them all.

So here I was, fretting that at 3 years and 366 days, my kid still didn't have some of her pretty obvious chompers.

Only recently did I discover that she's not alone in missing those two teeth.

That brought the total of children I knew with that particular smile to...two.

But! Not alone! That was key.

I've asked multiple dentists over the past couple of years, and they all thought they were in there and we shouldn't worry.

I even bugged a friend's husband while we were eating lunch last summer.

"Could you maybe, please, just take a teensy look?"

I also asked for x-rays.

Not at lunch. I mean, at an actual appointment with Playette's dentist.

But the overall consensus was to wait. If she had the teeth, they would come. If she didn't, they wouldn't.

Hm.

Well.

Sure.

I guess that makes sense.

So we sat back and waited and I tried my best to ignore it. I mean, honestly, at one point way back when, I wasn't even sure if I'd recognize my daughter with teeth since she had spent so long without any at all. I figured if we could make it past that ok that this too should pass and become a "remember when...?"

This past weekend, while we lounging and letting the summer soak in, I saw something poking through. I originally thought it was both teeth, but now I'm not so positive. It's at least one for sure.

Huzzah!

This whole teething for 3+ years thing? Tired.

But at least she has never seemed bothered by it at all.

Totally my issue.

5 Years

2011-07-07T15:38:00.005-04:00

Summertime

2011-07-06T19:11:00.011-04:00

I am The Exhausted.

But I'm also "A Blogger", so instead of plopping down on the couch and putting a dent in my already-one-day-overdue book, I'm sitting here typing.

So this post may actually cost me another twenty-five cents in fines.

Quelle horreur!

I'm that dedicated to my craft, to put myself that much more into library debt, just so ya know.

We've had some activity over here. Never a dull moment.

The job front is picking up. I've had interviews, have another tomorrow, and have a firm offer on the table. It's nice to be desired, but I'm also realizing what matters most to me. That complicates matters some, but I'm ok with that. We'll see how everything goes.

There's also some ~~crap~~ really thrilling stuff that's been brewing with the school district regarding Playette's placement for next year. My blood pressue is appropriately high. But I want this to be a happy post, so...

I already mentioned that we're in the midst of our holiday season over here. It all wraps up tomorrow with the big 0-5. It feels like we were just in Vegas, sweating to death while the Bellagio fountains decided that they'd take a break from being majestic that hour, just as we were planning to take our outdoor pics. Ah, memories.

We don't need any silverware, so go ahead and dazzle me with your traditional wooden gifts, k?

On top of that, we're having to say goodbye to new and dear friends. No fair on the moving while we have to stay behind, y'all. Booooo! That's what I say to your orders. Boo. And pa-tooey.

We've also been playing the role of hosts to multiple sets of out-of-town guests so I've been soaking up all the things about summer that I've missed over the last three years of living in HoodiesOnTheFourthofJuly-ville.

There's been plenty of pool and beach time, along with staying up way too late and lots of laughing and talking and reminiscing.

I could get used to that.

Regarding our most-recently-departed guests, this pic was taken the last time our families got together. Way too long, I say.

And check out these cuties now.

They get it from their mamas.

My Greatest Gift

2011-07-01T14:20:00.002-04:00

I. Cannot. Stop. Watching. This!

Love her.

Celebrity Sighting

2011-06-23T11:31:00.003-04:00

I don't know who I was more excited to meet...Hannah or her mom. They're both total rockstars in my mind.

They came over yesterday.

All the way to our house, just to help me, and I couldn't have felt more honored.

I'll talk more about what we were doing and why later on, but I just felt like I had to share.

Beth and Hannah represent a lot of what I'd like to eventually see in my own personal mama-daughter combo.

And, let me just tell you, people that go out of their way to help me? And my kid?!

You're stuck with me.

It means the world.

And We're Off!

2011-06-20T09:35:00.005-04:00

I woke up, dragged myself out of bed, and went to get Playette so that we could start our respective days. This is how I found her:

And, in case you're wondering, that's not how we left her last night. She really does wear pajamas, not her bathing suit, to bed.

I guess it's safe to say that we'll be spending a lot more time at the beach and pool as she's developing a true affinity for the water.

And WOOT! on the self-help skills, huh?

Let's go, 4!

=====

When I dropped her off at school, I had a chat with the Director about the bag of Playette-gear that was sent home with BD when he picked her up on Friday. Was it presumptuous of me to think that their intent was for us to take said bag with her to a new room? Or was everyone just asked to take their cubby items home for the weekend because they had painters coming in?

It really could have been either one.

And it turns out that it was really both.

I didn't know how to take that at first.

You mean, you're moving my kid because she meets age requirement to advance? And that's it? I don't have to fight or cry or go through all the requisite emotions that typically come with such a transition?

That was weird.

They, uh, well, they treated her like all of the rest of the kids in her class.

Damn shame that this is the exception and not the norm.

It actually made me nervous! Like they were trying to get one over on me!

Director was all, "Let's try, if you're ok with it, Mom. Let's give her a chance and see how she does. I have no reason to think that she won't be just fine. She's been doing wonderfully so far."

Whoa.

Isn't this what I've been asking for?

Isn't this in line with my own personal philosophy when it comes to my kid?

And the very thing that the school district refuses to do?

I just didn't know how to receive it.

Story of my life.

Let's go, 4!

=====

I hurt my back again yesterday so I'm off to take some meds and rest. Sitting here really isn't the most ideal situation. Because it hurts.

But I'm glad that I held off on the Percoset for a bit because I did just get a call that I'm being considered for a job I applied for a while ago. They'll schedule the phone interview with me later this week now that they've established that I'm still interested.

Let's go, 34!

'Tis the Season

2011-06-19T20:40:00.017-04:00

Around these parts, the end of June marks the ushering in of about a fortnight of celebrations at the Smith-Smiths'.

Today alone, we've got Juneteenth, Father's Day, and Playette's Birthday.

Which also means that I've been blogging for another full year. Wow.

We'll have a few days to enjoy our usual routine and then then comes my birthday, Independence Day, and our wedding anniversary.

I hope I'm not leaving anything out.

But, yeah, this is pretty much our holiday season.

Yesterday, we hosted a party for the Littlest at our neighborhood pool and clubhouse. She's wayyy into Dora these days so we had a luau themed pool party with a some character references sprinkled in.

Cate, you should know that one of her friends came in the suit and I gasped and clutched my non-existent pearls.

The party actually went really well, so I've been told. The kids were happy. The parents were cool. If something was awful, I missed it. Do I want to know? Eh. I think yes, but maybe I should remain blissfully ignorant and go with the whole success thing. We had help along the way, so I needn't be such a pessimist. I mean, from the decorator/photographer to the extra-juice-purchaser to the sure-I'll-wake-up-at-dawn-and-make-your-side-dishes-no-problem and more, we had a lot of great support and I really, really appreciate it.

It was short and sweet. The kids swam during the first hour and then we brought them inside for a lunch of hot dogs, chips, drinks, fruit, and salads.

On Friday night, I panicked, worried that we wouldn't have enough seats for all of the kids when it came time to eat. I pictured everything crumbing to pieces as children cried because there was no spot at a table. On Saturday morning, it came to me that we still had the rubber alphabet/number mats somewhere. Those were found and became the ultimate dining circle.

I was so impressed by our guests, let me tell you. They all were on their best behavior. Amazing, it was. I'd show you pictures of how poised they really were, but I didn't get permission to put their pics on the interweb, so you'll have to trust me on this one.

After eating, we - well - we ate again. This time it was ice cream and cake after singing to the birthday girl. She was soaking it all in and loved being the center of attention.

This is her SURPRISE! face.

I tried to skip out on opening presents, but thankfully I checked in with a friend first who informed me that kids actually enjoy that part and it's way different than the way most baby showers make my eyes go all glassy for two hours.

She was right. Of course. They were all into it, wanting their gifts to be opened next, wanting to help rip the paper off, wanting to see Playette get excited about what they had picked out for her. It was really cute.

Man. The presents. How could I have been so naive? I totally didn't expect the massive pile of presents. I mean, she has never been given so much stuff at once. We're very grateful for everyone's generosity and she's going to be trying out new things for a very long time.

So, after that, we were officially done. Tra-laaaa!

A little later than I had planned, but it seemed that just about all the kids were appropriately worn out and the parents I spoke to were happy that naps were imminent.

Those of us that remained took our time cleaning up while taking intermittent swim breaks, followed by margarita breaks, along with burger and cake and ice cream and dance breaks.

Gotta love a good after-party.

Dora's on to something with that whole "¡Lo Hicimos!" thing.

We did it, indeed.

Four years and counting...

=====

We came back to the house to find the AC had conked out on us. Thankfully, the day had cooled off some so that the indoor temp of 85 didn't feel a degree over 83.

Ah, it's the little things.

We had houseguests and I tried to assure them that this was not the norm and that sweating in your sleep is not a typical occurance when you come to visit us.

And then, of course, we woke up to everything in the freezer being melted. Ha!

When it rains, it pours.

But that was nothing that a gluttonous celebratory breakfast couldn't fix.

Hey, I felt like I earned it. Not only did I get back into Weight Watchers' good graces this week (yay for not having to pay!), but I also ran an 8K race on Saturday morning (yay for my fastest time yet!). I'm not sure that I completely leveled the scales, but it was something and this weekend is one of no-guilt-allowed. Tomorrow, I'm back on the wagon.

And both items are now fixed. Huzzah!

=====

For those that enjoy hearing more about the details, we offered sunglasses, water wings, leis, and flower hair clips as take-home items for all that were interested in such things. Finding luau items was pretty easy and I just added them up piece by piece from places like Oriental Trading and Party City. I was thrilled to find the Dora and Diego water wings at Family Dollar.

Also, anyone who was there? I probably have cute pics of your kid. Holla at me.

Blog Reader, Blog Reader, what do you see?

2011-06-14T15:33:00.007-04:00

Totally coincidental, this whole apparent vision theme. This actually happened the other day and I didn't get the chance to post it.

So. Anyway. Here's your riddle:

Click to enlarge if you so desire.

Any idea what it is?

...

...

...

...

...

Give up?

Here was Playette's response, after seeing the step stool overturned. At first, I didn't know what she was referencing, but then it clicked.

It takes me a while to figure things out sometime.

Someone should really label me and put me in a corner. Right?! That's totally what I deserve!

*eyeroll*

Sorry. School stuff has me all stressed and cynical today. I'm sure to rant about that later.

Back to her response...

"Mmmmm! X! Uh-yew!"

Translation: "M! X! W!"

Do you see it?

She was sooo excited to see her letters.

This made me smile, y'all.

I couldn't be more proud of her.

It's not that she knows three letters. She knows them all and so much more. This is just another example of her critical thinking. She loves to learn.

And no one else, NO ONE, on her "IEP team" can know these things about my child. They can't possibly understand why I fight so hard to get her to be considered.

If they did, they'd stop bucking against me for the bare minimum.

It's not fair.

I know...

Life's not fair.

We're not looking for a hand out, just a hand up.

Or a step, if you will.

Whatever works.

I know, I know, but still...

2011-06-13T14:32:00.008-04:00

In what was probably the early 80s, I recall watching an episode of Donahue. The topic was surgery that would correct one's vision. I remember being riveted, swearing that one day, absolutely before I got married, I would have this done. There was no way I was walking down the aisle in glasses.

Always a thinker, I decided in my approximately nine-year-old mind, that by the time I was ready, enough time would have passed to ensure that the procedure was safe.

It would be many years later, but when the opportunity arose, I bought myself some perfect vision. 2003. I beat my self-proclaimed deadline by almost 3 years.

And that's how much I hated my glasses.

I say all of that because, as shallow as it may sound, I really, really didn't want my daughter to have to go through those feelings.

I've stated before that I know what it's like to grow up Black and female. In a lot of ways, that's difficult enough in my mind. But I don't know what it's like to also have developmental delays and a diagnosis that's written all over my face.

I don't know...it's little and common and silly, probably, to even devote this much thought to the issue, but...it's just one more thing to add to the pile of reasons for people to look at/treat her differently.

Today, after three hellish hours in The Most Popular Opthamologist in the World's office, we came out with a prescription.

And I ordered my baby some glasses.

I'm not normally mushy about a lot of milestones, but this one got me. It didn't feel good. I felt like I had let her down. She's not quite four. It's so early. I'm the one who passed this on to her. guiltguiltguilt.

The doctor showed me what her vision is like untreated. Ugh. Why didn't we know sooner?

She didn't want to try the frames on and I didn't blame her.

But we did the right thing and in two weeks or less, her world will be that much clearer.

Gag.

#shallow
#movingon

Preventive Maintenance

2011-06-09T13:37:00.017-04:00

When I was in college, learning how to operate and repair massive ship engines, I'm pretty sure that one of my textbooks had this same title.

That was such a lifetime ago.

But what's interesting is that, even though I surely do not remember half of what I once learned, the principles still apply today.

I always think of that parallel whenever we take Playette to see the Pediatrician or some specialist. Almost every time we have an appointment, it's not because she's sick. It's just preventive maintenance.

There's a list that parents and doctors use when it comes to kids with T21. It's a reference guide of what needs to be done and when. We all know the deal, more or less.

Thyroid checks regularly, along with CBCs (I always ask for a "manual diff", which makes medical professionals think that I'm one of them, but really I just heard it said when Playette was a newborn and it stuck with me).

Then there are neck/spinal x-rays for AAI as well as tests for Celiac Disease that start at about age 3.

Most of us find it pretty typical stuff to see a Cardiologist, Endocrinologist, Audiologist, Ophthalmologist, and ENT, even if our kids aren't showing symptoms of anything.

It's just what we do.

So, in that vein, it was recommended that we get Playette a Sleep Study. Now, you may be wondering, "Haven't you done that already?" but no. That was a Swallow Study. Twice.

Orrrr you may be thinking of the non-sedated EEG we did more than two years ago. Similar goop in the hair, but looking for something totally different.

This most recent test, which we have attempted to have done in the past and never really got there for one reason or another *coughINSURANCEcough*, came about after the last ENT visit where it came up, again, that Playette snores and fidgets in her sleep. In and of themselves, not such a biggy, but when you add in that extra chromo, it means that a sleep study is in your future. Sleep apnea is not uncommon in the Ds community and you can also get info that may lead you down the path to a Tonsillectomy and Adenoidectomy (T&A).

So that's what we did, as a family, on Tuesday night.

Because we're all about being miserable together.

No one escapes.

It wasn't too bad, actually. I mean, we were all sleep-deprived the next day, but there are much worse things.

We got there at 7:30pm and left at about 6am. It took some time to get the machines or whatever (I have no idea since they weren't in the room with us) going and then more time to stick all the electrodes thingees all over Playette's body.

It was kinda like watching the making of Thriller.

She was much more agreeable than I expected and we were actually glad that we did it now, when she could be amazed by the process and not just 100% irritated. She did try to take the one off of her foot for a while and the final straw of sticking something up her nose was met with some distaste, but all-in-all? Not horrible.

Even though, personally, I thought she looked hilarious. I wish I had gotten a picture before the hole was cut out over her face. That was classic.

Playette seemed like she was ready for bed at just the right moment, but that didn't last. It was if, all at once, she remembered that she was in a new place and there was no way she was going to sleep through the party.

Even though that was kinda the point. To sleep.

BD and I tag-teamed until she finally passed out.

And then something in the room set off my hacking cough so BD made me get up and take the other bed while he took my place sharing the one with Playette.

Because doing this once is one thing, but doing this twice? Uh-uh. We weren't trying to go out on a technicality.

This one is going in the books as a mission accomplished even though the results won't come back for a couple of weeks.

=====

For those that wondered, the second hospital visit that morning was for me. Just an appointment. Nothing to be concerned about. BD had taken the day off so he was lucky enough to sit through it all with me.

Restating the Obvious

2011-06-08T16:31:00.010-04:00

I'm not Superwoman!

I am reminded of that every time our chosen way of life sends my husband away from home for extended periods of time.

I mean, it was no deployment, for sure, but two weeks away is two weeks away. And I had to manage on my own. Which I happen not to enjoy. At all.

I know, I know...I'm not the first and I won't be the last.

But I am SO HAPPY that BD is back home. The first time he took Playette up for a bath after he got back, I was just stuck. Right there, in the middle of the floor with my mouth hanging open. My buddy was home!

What I do appreciate, though, is knowing that when I have to do it, I can do it. Shoot, a trip to the beach one day and a pool the next? Total rockstar status for this mama.

I wish I felt comfortable sharing my thoughts and emotions while BD is actually, you know, gone, but I can't. I created that boundary long ago on this here blog and so, lucky you, you just get to wonder a lot and then read these boring blah-blah-blahs once the time is up.

I'm so sure that my in-the-midst-of-it-all whining would be much more entertaining.

*blank stare*

=====

We've been keeping busy this week. Today alone, we all woke up in a hospital (cheap family vacay FTW!), BD and I went to another one across town, and then spent an hour in a pharmacy, all before noon.

It's an exciting life we live.

I'll share some more about what we were doing tomorrow.

=====

Oh. And I'm party planning.

She who hates kids' parties is now knee-deep in frivolous details.

So, uh, if you know where I can get a Dora shirt with a Hawaiian theme, please let me know. Birthday reference would be a bonus.

Because if she doesn't have this exact item, the party will be ruined!

Do you feel guilty yet?

Don't worry. I've already ruined the party once.

Now, it's all about how many times it will happen - not if - so, no pressure.

=====

At some point today, I will get around to completing Week 4 - Day 3 of Insanity.

For the record, I do not look like the lady in this random Walgreen's Gatorade display ad that I took a picture of and am using for motivation.

I mean, yet.

I don't look like her yet.

Obviously...my hair is too short.

And, uh, she probably doesn't consider Cupcakes to be a major food group.

Like some people I know.

This may end up taking a leeettle bit longer than 60 days.

Encore!

2011-05-30T11:24:00.007-04:00

We continue to stay busy over here, taking full advantage of the ushering in of summertime activities.

First, there was our first beach day yesterday.

It was a great time, thanks in part due to our meeting of another mom out there with her twin boys who happened to be very close in age to Playette. The kids really enjoyed one another and the other mom was of the more-awesome-than-I-am variety because she had an abundance of snacks. Playette even ate a half-sandwich she was offered. Which is amazing. She doesn't even eat sandwiches! At least not my sandwiches. Hmph.

Turns out that not only did one of the boys have Ds, but he also goes to Playette's school. He's in the morning class and she's in the afternoon. (well, sort of, but it's a holiday, so I refuse to think about the school sitch right now)

Anyway, FUN.

And since then, Miss Playette Keys has been entertaining me with her musical abilities. I figured I'd share a couple of her recent concerts with you.

My girl loves to sing. She's always singing something, whether it's a song on the radio or one of her own composition. Usual lyrics include: Mama, Lea, Daddy, night night, wash hands, let's go, etc.

Many, many thanks for Cate for her wonderful suggestion of the M&D Birthday Cake set. Cate always has the best toy ideas. Like the Alphabet Bus, also a huge hit in this house.

Today, I'm thinking that we may head to the neighborhood pool for a bit. I mean, if I have to wash this child's sandy head and deal with the dramatic hot mess that comes with that action, I need to make it really worth my time and get some chlorine all up in there, too.

=============

To all of the men and women who serve, including my very own BD, I'm proud of you today and every day.

A Day in the Life

2011-05-28T23:08:00.007-04:00

Today was a day much like many others in so many ways, but there was a little something special about it, too.

Playette and I got up and going early. She helped me check things off of the to-do list, one by one. She charmed the people we encountered at Kinkos, Weight Watchers, the Post Office, Exchange, Commissary, and even drivers in their cars that we pulled up next to at stoplights. We had lunch out and had the good fortune (??) to run into the local cupcake truck I'd been hearing about. Cupcakes weren't on the menu for today (that's tomorrow), but I'm a sucker for tiramisu, so when I saw that flavor, it was a wrap.

I have no good reason for the second cupcake other than I am a glutton. And I'm still going tomorrow. Baby steps.

We came home and watched a movie or slept on the beanbag or left the room and brought back random household items depending on who you were and what point in time it was. But we got through the whole movie, so that should count for something.

We walked around the neighborhood, enjoying the cooler evening temps, and then headed home for dinner and a little playtime before bed.

It was nice. As regular as regular can be. And I soaked it in like sunshine.

rOTten

2011-05-26T22:49:00.003-04:00

I had to fire the Occupational Therapist yesterday.

It was our second visit with her. I thought it was bad last week, but this week was even worse.

I thought she couldn't remember my child's name because they had just met. I gave her some leeway. Even though I corrected her over and over and over again.

I allowed her to discount what I knew to be true about my child only so that she could eventually figure out that I was right after all.

I sat in the room, amidst total chaos, and realized that there was no way that my daughter was ever going to be able to focus in this environment.

I heard her say that our chief concern was something that she had no idea how to address.

I watched her get frustrated when my child didn't answer when she continued to call her the wrong name.

I saw her watching the clock the entire time and then end each session early.

I heard her ask me to change our appointment time and then look bothered when I said that would not be possible as we had a conflict.

I saw her discount my child's abilities. "Oh, that's much too difficult for her," she said. "Really?" I replied. Because she does something similar at home and has been for months.

I'm sure there was more.

But any of these should have been enough.

So, in my most calm voice, doing my best to protect her from my truest emotions, I politely told her that we would no longer be needing her services. She was welcome to do whatever she had planned with that precious 45 minute slot after all. Because we wouldn't be back.

See, here's the thing. My child is almost four. She's been seeing therapists in some capacity since she was six weeks old. This was not my first trip to the rodeo.

As much as I don't want to be that mom, that mom gets things done. She knows that her time is precious, as is her child, and wasting resources gets us nowhere.

It's tiring, draining, being that mom.

But that mom? She's getting 45 minutes of life back next week.

Maybe we'll go get ice cream instead.

Using a spoon counts as OT, right?

In all honesty, I'm proud of myself. Part of me wanted to just give it more time. Maybe another session or two. This place is so close to the house. They're just getting to know one another. It'll be awkward when we come back to the office for Physical Therapy. Maybe I'm just being too quick to judge. Are my expectations too high?

And then I came to my senses.

Trust yourselves, ladies.

You have instincts for a reason. Your kids deserve the best and so do you.

And here I was thinking that it was just my kid that was getting therapy.

Lessons are everywhere.

Out of Character

2011-05-25T12:53:00.006-04:00

So, last week, when I was feeling all motivated about the NDSC Conference, I checked Kayak and saw a pretty good price for tickets. Well, as good as they come these days. Flying is 'spensive!

"Ah, cool. I'll go back and get those later."

[cue the laughter of the universe]

Of course, when I went back, the tickets had gone up over $100. Each.

And since BD needs to come home a little earlier for work, his ticket was already more than ours to begin with.

iPouted.

To put it mildly.

Seriously. I was pissed like someone had stolen the money out of my bank account. In my mind, I knew that I never had the tickets to begin with, but still. I mourned the loss of that money and all that I could have done with it. ~~Like buy really big cupcakes.~~

Thus began the obsessive checking and re-checking of Kayak.

I put a daily reminder on my phone, but there was really no need. All on my own, I checked as soon as I woke up, before I went to bed, and sometimes in between.

My chest got all stabby as the prices kept going up and up and up.

I began feeling bad about registering for the conference because, if I hadn't, we could just bow out gracefully, right?

*sigh*

And then this morning it happened. The clouds parted and a fare that was $5 less than the first elusive one popped up. BD's ticket had gone back down as well. Oh Happy Day!

They're still 'spensive, but what're you gonna do?

I bought them.

And it took forever, what with all the verifying and extra security measures that you have to go through. They also threw in the need for yet another password to use my debit card and I had no freaking clue what that was so I had to recreate it and then, of course, I remembered the last one when I tried to make that my password and they were all "you already used that one." Ugh.

But, anyway, we're going. For sure now. On an aeroplane. Or six.

That's what I get for trying to do stuff all early.

And I know that I need to take the Kayak app off of my phone immediately because if the prices go down again? I.WILL.LOSE.IT.

As a reminder, for anyone heading that way, there are discounts available on AirTran (20%) and American (5%). Not that I got to use either one. *grumble grumble*

Also...today is Day 10 of Insanity, in case you were wondering. This whole ticket thing kept me from working out....What? Do it now? But, but...Fine then.

I'm pouting again.

I still want a cupcake.

Birthday! Birthday! Birthday!

2011-05-24T09:45:00.010-04:00

My kid is obsessed with birthdays.

For the first couple of years of her life, it was easy to convince myself that my philosophy of no shindigs wasn't bothering her one bit. She had no idea what she was missing.

But now? Ugh. She totally knows.

She loved her party last year and, personally, I think that should count for at least two celebrations, if not more.

Kid parties are just. not. my. thing.

Starting a couple of weeks ago though...the onslaught began.

First, there was a party at her school.

Then, she wore a birthday hat around the house for several days.

Next, we turned the TV on and they were celebrating a birthday on Yo Gabba Gabba. It just wouldn't stop!

She's forever saying/signing "happy birthday" and "presents" and "candle" and "party" and "cake" and "dance" and singing the song that goes along with it all.

Then, we went to a party on Saturday. She was so excited and enjoyed herself immensely.

And now I feel like I'm starting to cave.

We've got just under a month until my baby girl turns four.

[insert every baby-to-kid cliché here]

Crap. I think I'm gonna have to come up with something.

Something small. Something small. Something small.

It better be something small.

Bullets

2011-05-17T12:10:00.002-04:00

I finally registered for the NDSC conference. Funny that I said "finally" when it's wayyyy before the deadline for when the price goes up. It's usually more my style to wait until then.

I guess that's why we still don't have plane tickets. Procrastination FTW!

Someone I was friends with a long time ago died in a way that makes me very sad to think about. A lot of fun memories have come back to my mind since finding out that his life was cut short. I remember that my mother really liked him and that makes me smile. I also remember how pissed my mother was when the group of us "borrowed" her car and drove to the place that I now live and stayed overnight. If my child is like me when she's 18, I totally deserve it.

Laughing makes me feel better.

I have way too many papers in my house. They are in piles. Everywhere. And include lots of unopened mail.

I will be 35 in 45 days. That makes me think of a lot of things.

Like, "What can I accomplish before then?"

And Advanced Maternal Age. *gag*

By the way, I started Insanity yesterday.

The Fit Test made my calves ache.

I'm scared to do today's workout.

Playette started Applied Behavior Analysis (ABA) Therapy last Thursday. Today is day 2. They're still in the "getting to know each other" phase. What I like so far: it's at our house. What I don't like so far: 3 hours a day, twice a week is a lot for this mama! If you have any experience with ABA, please feel free to share.

Playette continued going to her new school, the less-shiny place that we have to pay for, while I was on reserve duty. They took pictures. They are hilarious. I can't bring myself to toss the proofs even though I have no intention of purchasing them. Ever. Never.

She's still enrolled in public school. She will obviously not be receiving an award for Perfect Attendance since, well, she hasn't been there in a month and we're still plan-less for moving forward. PoTY!

But if she does go back? She's allowed to be picked up in front of our house again. I wonder what my landlord said to the board, exactly, to get them to switch up.

This neighborhood isn't all bad. They had Margarita Friday at the clubhouse last week and we got the opportunity to meet some nice neighbors. Apparently, we have more than our share of Navy SEALs in this little enclave. I think that's pretty cool.

Job hunting isn't fun, but I continue to do it. Just like laundry.

I have the most amazing video of my kid doing something but I can't post it because of pervs on the web. You'll just have to trust me on this one. Or come to San Antonio in August and ask me to show you on my phone.

Are we really going to San Antonio in August?!

I've been cooking a lot more. BD bought me a food processor and it's awesome and so much easier that actual cutting. Yay!

Every time I add another bullet, I'm really just trying to avoid working out.

Ok, fine...

A Dangerous Mind

2011-05-15T21:14:00.013-04:00

Sometimes, just for S&Gs, I like to offer a task to Playette for the simple delight of seeing how she'll respond.

I know my kid is bright. I don't care what anyone's random assessment or evaluation says about this percentile or that developmental age, because I know what I know. This kid's cylinders are firing and I love to see them in action.

So, this afternoon, after Playette had completely jacked her shirt up with the remnants of 1-2 bananas (we're still not sure) that she stole off of the kitchen counter and shoved in her mouth faster than we could even notice, I cleaned her up and asked her to go upstairs, pick out another shirt, and put it on.

Sounds simple enough, right?

But this is big. If you have a kid like my kid, I didn't even have to tell you that.

Just so you know, she's not able to say the words I said to her all in a row like that. But I knew that she knew that I said. No question about it. Her receptive language skills are awesome.

And then I waited.

She went upstairs.

Closed her door.

And then a few minutes later, she came down like this.

New pants. Backwards. No shirt. Over the shorts she had on.

I had to laugh.

Honestly, there are times that I get frustrated, sometimes to the point of tears, when she doesn't get something. Or if she's not telling me something that I know she knows. I do let it get to me...sometimes...and usually I kick myself for it afterwards because that has sooo much to do with me and my issues and not her as a person at all.

It's a delicate balance, attempting to keep expectations high, yet realistic. I don't always pull that off perfectly.

But today? It was just funny. And I appreciated what she did know.

She knew to leave me and go upstairs.

When I went up to see if she had destroyed her room in the process, I learned that she knew to go to her closet and open it up.

She knew to grab a new piece of clean clothing from a hanger.

She knew to put the clothing on her body.

She knew to come back to me with a look of beaming pride on her face to show me what she had done.

I really had no idea how she'd come back or even if she would, when I sent her upstairs to get that new shirt. But what I've learned time and time again is that I have to give her the opportunity to impress me. She rises to meet challenges and I think that's the most important thing I need to keep at the forefront of my mind. She won't always get it right away, but what are the chances that she'll ever get it if no one ever expects her to, y'know?

And, by the way, if you're totally amazed at my mad digital art skillz as displayed in that last photo? You're in luck. I'm unemployed and looking for things to do that don't involve cleaning my house or going to doctor's appointments. Hurry though. I expect an onslaught of jobs coming up from this post.

I Blame Blogger

2011-05-13T20:27:00.006-04:00

The last time I posted was over two weeks ago.

Sure, the site may not have been down that entire time, but since I did try to write something yesterday and I couldn't? That totally counts as a valid excuse for not staying in touch.

Well, that and the fact that my reserve duty time didn't exactly leave me bored and alone in a hotel room for any good length of time like most of my trips. I worked all day and partied all night.

I mean, I didn't party every night, but the nights I did party kinda seeped into the nights that I didn't. Because I don't party often. I'm out of practice. Quite the cheap date, I am. Plus, on the night that I partied the hardest? I ended up sitting ~~and crying~~ on a curb.

You do not want to take this old lady to a club. You can now never say I didn't warn you.

Most evenings, I found a way to workout in a new and exciting or much-missed way (Tae Bo with my peeps! Zumba at my old church! Running through the nation's capital!) and then I used that as the ultimate justification to eat like every meal was my last. The cupcakes and the burgers I consumed, alone, were enough to feed a small village. But then I also had to have the Greek restaurant I've always wanted to try and then the Thai I missed eating and the pizza I'd heard so much about and the white chocolate bread pudding and the special strawberry lemonade drink...and, and, and. Yeesh.

I dared to weigh-in at Weight Watchers on the Saturday after my first week was done. It wasn't pretty. So I cried. Yes, again.

This weight loss thing is a beast, yo. I've been meaning to talk about it for a while. Have you ever had the thought that you'd be so happy if you could fit into those skinny jeans just one. more. time?

Well, I didn't have any skinny jeans, but I bought some. At the end of December, right before we left California, BD went with me to Banana Republic and I bought jeans that made me feel like a rockstar. I was 3 pounds from my personal goal and it felt amazing.

A week later, those jeans didn't fit.

Almost 5 months later, I don't think I can get them above my knees.

Maintenance...it's more difficult than I ever anticipated.

I wish I could say that's Blogger's fault, too, but I know it's all me. We moved, I got lazy. Not with working out, really, because I've been into all kinds of things like Bootcamp and Zumba and Double Step and swimming and weights. I even joined a local running group full of crazy people that like to run up hills for an hour.

No, it's not the activity. It's the food.

This place is full of temptation and I've been succumbing on a regular basis.

It's totally unfair that I live walking distance from a Sonic and I've pretty much become a regular at the Dairy Queen and Chick-fil-A up the street.

These place simply did not exist in my small Central Cali coastal town. They're a lot easier to avoid that way, y'know?

I guess it's good that I'm acknowledging this now, before I blink and end up right back at my starting weight. Because I'm totally liable.

I'm up 10 pounds and if you add in those last 3, I've got 13 to go. That sounds like a mountain to me right now. Which is nutty, I know, considering that I'm still at 42 pounds lost. But it does. It seems insurmountable.

If anyone has any advice, I'm listening.

So...I came here to talk about what I've been up to lately (Mother's Day weekend in NYC via bus!, IEP meeting, doctor's appointments, etc.), but I guess this is weighing heavy (ha?) on my mind, so I'm dumping.

I need some motivation.

A kick in the pants.

Some accountability.

Something.

Anything.

Blah.

Happy, Tears

2011-04-27T08:50:00.006-04:00

I was just over at a friend's blog and read something that made me cry. But it was good!

I'm sure that I'm extra-emotional because I miss my kid, but still.

Who couldn't miss their little with BD sending me pics like this before I even got through airport security?!

Way to play dirty, dude. ;-)

I'm on reserve duty for the next week and a half, so BD is holding down the fort at home. We had a conversation this morning about the necessity of tiny, brown leggings and debated the pros and cons of cornrow removal.

Yup, we're parents.

Things have been pretty busy for us lately. I was fortunate to be able to participate in a long-awaited Girls' Weekend in Savannah, GA, which was followed by Spring Break, and then Playette and I road-tripped it to Philadelphia, returning home just in time for me to pack up and fly to DC.

So that's where I am.

Home. Ish.

Strange. I haven't been here in 3.5 years. So many things have changed. It has been great getting to see people and places that I've missed and I'm looking forward to the time I have remaining. The work I'm doing here is good and I'm not in harm's way. I really can't complain.

BD and Playette will be arriving on Friday so that we can spend some family time in the place where we all became a family.

=====

I'd like to thank all of you that helped us to win the photo session! I'm really excited to take pictures with Natalie in May.

Winning

2011-04-18T14:32:00.005-04:00

I'm all about it.

Wanna help me?

Ok, so last night, I entered the following pic in the Natalie Crater Photography "Mommy and Me" contest.

If you become a fan of the business on Facebook by clicking "like" on the page, then you can, again, click "like" on the our pic. That's it.

The contest ends on Sunday, April 24th at 11:59pm and the one with the most "likes" wins.

We can totally do this.

The prize is a $30 mother's day session, complimentary 8x10 print, and a special gift for me (woot!).

Bonus: I met Natalie because we both moved here at about the same time. She's a fellow Ds/military mom.

Because We Like to Keep Things Interesting

2011-04-14T09:20:00.004-04:00

I got a call this morning.

It was the head of Transportation for our school district.

He was letting me know that door-to-door bus service would resume.

This was not a surprise to me (other than the fact that he actually called), nor was it resolved without a lot of leg work on the parts of multiple people.

But the wrong was righted.

And it probably won't help our personal situation one bit.

But, you know, it's the principle.

So, hooray for victory and all that.

=====

I dropped Playette off at her new preschool today...

On that note, I will go bury my head in ~~a bottle of wine~~ the sand now.

We'll sort the rest of all of this out after Spring Break.

I can't quite put my finger on it...

2011-04-13T10:03:00.001-04:00

But something's different.

Like a Moth to a Flame

2011-04-12T09:11:00.002-04:00

My child's clothing seem to be drawn to the toilet bowl.

She sits there, does her business, and then decides to strip down.

I'd be ok with it if she didn't decide to send the clothing swimming afterward.

Except yesterday when she sat there, did her business, took of her pants, stuffed them in, and then did more business on top. Like a cherry.

That instance deserved three WOOCHILEs and one PRIMAL SCREAM.

Yeah, I think I'll start rating my frustration. Maybe that will make it more like a game? And then it'll become fun instead of stress-inducing?

Right?

*sigh*

Ok, so this whole Time Out thing...

Have they come up with something new yet? I never got Time Outs as a kid. I got my a$$ beat. So, I'm really trying to break tradition here. But Playette seems to have this Time Out thing all figured out. She has no problem sitting on the step(I've seen a whopping 3 episodes of Super Nanny and this is what I took away from it). She waits it out (sometimes she tries to entertain herself), and when I come back to her she waits for me to come down to her level and talk (blah blah blah), she says ok when I ask her not to do whatever again, then says and signs sorry, and gives me a hug while patting my back and asking me if I'm ok.

It kinda feels like I'm the one who was on Time Out.

Wait. Is that the point?

The Butterfly Effect

2011-04-08T07:27:00.005-04:00

I just walked in the door from one of the biggest ClusterFs ever!

Ok, so if you've been keeping up with the story, you know that Playette now must be dropped off in the afternoon at the front of our neighborhood, on the closest city-maintained road.

I swear, in the last few days, I have learned more about what the colors of your street signs mean and renegade condo association law and public school transportation for children with special needs than I ever wanted to know.

Today? It was gorgeous out. Loved walking out there to get my girl. In fact, I told the driver that if every day were like this one (They are not. Tuesday, it was cold and rainy and I cursed all of the parties involved as I drove to that same main road.) that I might just enjoy this little change of plans we've had thrust upon us.

I still drive her to school on principle though. That whole "joke" thing? Screw them and their morning bus. I have since called the head of both Transportation and Special Ed Transportation (gag) and given them the business. I'm not finished either.

This whole bus thing won't last must longer anyway, but that's a whole 'nother story to be elaborated on at another time.

Anyway, so as the aide is getting Playette out of her 5-point seat straps and then chasing her down after she ran directly to the back of the bus, and I'm talking to the driver while we wait, I start to hear some commotion.

I'm going to try to keep this insanity brief, ok?

Let's see.

I just went to Paint and tried to make you all a diagram, but it sucked. You may need to break out your own napkin or something.

So there's this lady, A, and she's sitting behind a guy at the stop sign, B. Man C is stopped on the road, facing the bus.

A honked her horn. I would learn directly from her later that she had been waiting 3 whole minutes for Playette to be unloaded from the bus. She admitted to being very impatient since all that was going on was a little chat between the driver and I, or so she thought.

B started driving after the honk. He's maybe in his 70s? I only mention his age because it kinda matters in a bit.

C immediately darts to block B from proceeding past the bus.

And then this is where I start to notice something is up. Because I'm on the side of the bus closest to the curb, I couldn't see how the how thing started.

C begins to should at B. "YOU'RE BREAKING THE LAW!! THERE ARE KIDS ON THIS BUS!" amidst some colorful expletives.

Because, you know, the lights were flashing, the stop sign was extended. All that good school bus stuff.

But then...oh, lord...then C takes his left hand, balls it up, and punches B's windshield. It cracked.

B is very rattled and gets out of his van.

A starts yelling at C. C holds firm to his reason for coming at B the way he did.

B starts saying that he's going to get C's license plate number and have him arrested.

Not too difficult since C isn't going anywhere. He really believes he is in the right. C wants B arrested.

Whoa.

A then drives over to me, to get my name and phone number as a witness. It's at this point that she tells me exactly what happened and I jump at the opportunity to inform her that my daughter is riding an accessible bus and, well, sometimes that takes longer than 30 seconds to disembark.

A's face changed. She felt like an ass. Mission accomplished.

I then told her that up until a couple of days ago, my daughter was dropped off in front of our house. Not anymore though. So now everyone is just gonna have to wait it out whenever she's getting off the bus.

So there. Neener neener and nanny nanny boo boo.

Playette just keeps pointing at the bus. "Bus! Bus! Bus!"

They all. keep. yelling.

C does this whole Citizen's Detainment type thing and demands that the bus driver stay put. The aide gets off the bus and comes over to me. We are in awe of this whole situation. Traffic is backed up in both directions. I can hear people making up their own versions of the events already.

"B hit his head on the windshield! He's hurt!"

"C took B out of the car and beat him up!"

Messy, messy.

A neighbor comes up and asks me what happened. I tell her, adding in that this never would have happened a week ago. Because I'm that kind of an opportunist.

She asked me if the vans that carry people to the Senior Center would have to do so at the main road, too. Hm. Well, of course not! She seemed happy to know that. Toddlers, ok. Seniors, no.

Then C's wife drove up and started talking to me. I felt bad for her. She had nothing to do with this, but she was certainly going to have to deal with the consequences.

I felt bad for them all, really. Even A who admitted that she was the catalyst.

B made a mistake and now had a broken windshield.

C started out well, but his good intentions got buried in shards of glass. That was not his best decision.

What. A. Mess.

But, you know, my life doesn't stop because people are stupid. I needed to get home because I was expecting a social worker and a nurse to come evaluate my child and my life because we're cool like that.

So we walked home and left the circus behind.

I snapped this first though:

When those ladies arrived about 30 minutes later, they said that the police had arrived on the scene.

In the words of my neighbor, "This one will be in the newsletter."

I sure hope so.

I'll let you all know if I learn about any more details.

=====

I wrote this post yesterday, but I thought that the
7 Day Blitz for Kirill (though Monday, April 11th) should take precedence.

Another Fight

2011-04-07T13:45:00.004-04:00

Do you know about Kirill?

Chances are, if you're a fellow Ds blogger-type, that you do.

If not, here are the basics:

Kirill is a little boy currently living in an orphanage in Russia. He has a family that loves and wants him very much. They went through all of the proper steps to bring him home only to have a judge tell them no in the final moments.

Hear me on this.

After the parents-to-be sat in court for hours, the judge determined them fit to adopt as a family, just not for Kirill.

Because, according to this judge, he's defective.

And he belongs in an institution.

Not with a family.

Read the whole story here.

I've said this for several situations over the past few days and I'll say it again.

WTF IS WRONG WITH PEOPLE?!

So. Of course they're appealing this decision. But it will cost them a ton more than they had originally anticipated. With that in mind, a group of friends set up a way to help raise funds for this specific purpose. It's going amazingly well.

If you're able and interested in helping them reach the ultimate goal, please click here.

Each $10 donated gets you a shot at a long list of prizes. Want a new camera? How about a $500 gift certificate to B&H photo? Always had your eye on a Flip video?

Now might be your time.

There's no pressure and I won't hate anyone that doesn't participate. I just felt compelled to share something that has touched my heart.

Allez Cuisine!

2011-04-05T20:11:00.004-04:00

*I have a strong, strong desire for a temporary topic change in the general direction of FLUFF. My brain is going to explode otherwise.*

So, there I was this morning, trying to print out W-2s (look at us! tax prep before summer! we're awesome.) while two phones continued to ring and I tried to figure out how to access a new Navy Reserve data system since I'm heading out to training soon...

And then I smelled it.

It was a smell that reminded me of a couple of things.

But, most importantly, it reminded me that I can't take an eye off of my kid for one second.

I guess the Cheerios weren't filling enough. Playette decided that she needed a side item.

Wanna see what my little Iron Chef decided might be tasty?

Because my morning wasn't crazy enough.

I picked her up, guilty look and all, carried her to the kitchen, wiped her mouth and hands, and called Poison Control.

(I'm so glad she was smarter than I was in high school and didn't rub it on her eyelids.)

I mean, I figured it wouldn't hurt her since I've heard plenty a home-remedy that included a spoonful of the gunk, but I really am not working with a ton of good fortune these days, so there would be no taking of chances.

Except, while I was walking and dialing, I made a mistake.

All it takes is one number, y'all.

I realized it wasn't Poison Control when I was asked if I was seeking men or women for my pleasure.

Well, then.

I hope I didn't get charged for that.

=====

Oh, and Playette's totally fine. That teaspoon of rub didn't slow her down one bit.

And her breath has been eucalyptus-y fresh all day.

Bonus!

But Wait, There's More

2011-04-04T21:04:00.003-04:00

First, let me thank you all for your comments and support. If anything can make a crappy situation a little better, it's knowing that you have an army of peeps behind you.

**insert sanity break to Google images of fighting marshmallow chicks here**

Ok, I'm back.

In all seriousness, I am very grateful. I know for a fact that BD and I were not the only ones mulling over Friday's situation ad nauseum this past weekend. So many people wish the best for us and our little girl and knowing that you're out there makes such a difference.

All that said, you'll dig this.

Playette usually gets picked up at about 10:45 am.

At 9:15 this morning, the phone rang.

It was her bus driver.

I think my eyes rolled out of my head.

She started out by telling me that they wouldn't be able to pick up Playette anymore.

Wow! She's calling to tell me that she got fired! Bless those other parents that complained, and rightly so. Here I am thinking-thinking and they took immediate action. Good on...

"Yeah, we're not allowed to drive the bus in your neighborhood."

...them.

Wait. What?

"Someone complained about the bus coming into your neighborhood, so now you need to bring her to the main road to get picked up."

They can't be serious.

Instead of just about anything else I could have said, I heard myself ask, "So, just when do you expect to pick her up, exactly? On that main road?"

The reason I asked is because, well, I kinda never know when they're going to show up. It could be 10:30, maybe 11:05. Good thing we can stay inside, out of the elements, while we wait.

Oh. Not anymore, huh?

So, the SUPER MEGA ironic thing that hit me is that they are now trying to make me work harder for piss-poor service.

Hm.

Interesting.

This set into motion a chain of events that basically told the school, the transportation department, and my neighborhood to go eff themselves. They won't have me or my kid to mess around with anymore.

But, while that feels right, it also leaves me feeling like it's not enough.

I want someone to suffer.

For their incompetence, for their ineptitude, for their ridiculous lack of overall professionalism and common decency, someone should be made to look like the asses they're all behaving like.

Taking our bat and ball and moving to another field seems somewhat wimpy.

But don't get me wrong, what works for us is what works for us right now. And I'll surely find a way to get up on my soapbox. Trust.

There's just something about picking your battles.

How much time and energy do you choose to invest in each situation?

It truly has to happen before you can know.

I do want to say this though...

Bless the afternoon driver who was all, "No one told me not to drive in here. I'm bringing this baby right to her door!"

and

Bless my landlord, the complete antithesis to our former wack-a-loon in CA, who called me tonight all riled up and ready to defend our rights to her homeowner's association. She could not (unnecessarily) apologize enough and plans to embarrass them at the next meeting. She made me smile.

As do all of you.

This story isn't over.

By a long shot.

I drove my daughter to school today.

My daughter that loves riding the bus so very, very much.

And I'll keep doing it, ensuring that she never has to be tainted by those people ever again.

I can't protect her from everyone, but, dammit, that won't keep me from trying.

Also

2011-04-01T11:16:00.002-04:00

You know what makes me even sadder about this situation?

It's that we can fix it.

With money.

Money to pay for my daughter to go to a place that will not only respect her, but also us, as parents.

Everyone doesn't have that option.

And it's not right.

Or fair.

Or decent.

Go ahead and tell me I'm too sensitive.

That I need a thicker skin.

I dare you.

Hardy Har Har

2011-04-01T10:59:00.004-04:00

So, I just put Playette on the bus to school.

The aide was all excited and said to me, "Yesterday, when we were on the bus, [Playette] told me, 'Good morning, Ms. Toni. How are you doing today?'"

My jaw dropped. Wow. That's FANTASTIC use of speech and something that I just haven't heard yet from my daughter.

I mean, she knows all of those things, but to string them together like that? Huge.

Just as I'm letting this all sink in and already trying to think of ways that we can get her to do this with people other than just Ms. Toni, the laughing started.

"APRIL FOOLS!"

"I've been getting all the parents with this today! HAHAHAHA!"

Yeah.

Funny.

Tell the parents of children with speech delays, and varying other disabilities, that their kids can speak...and well!

God, these people suck.

=====

I've still been struggling with the private preschool thing, which is why I haven't shared the verdict.

But, well, this definitely adds one to the "Pro" column.

More on Spreading the Word

2011-03-31T10:59:00.004-04:00

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!

Easy Peasy

2011-03-29T11:23:00.004-04:00

Ok, so Patricia Heaton, the actress, has vowed to donate $1 for every new Twitter follower of Reece's Rainbow up to $10,000.

Forget the politics, if you can, and click the button to help save the lives of some wonderful kids. Every dollar counts.

If you're not on Twitter, it's a very simple sign-up. If you need help or have questions, let me know.

Reece's Rainbow: @reecesrainbow

If this message inspires you to sign up and you just can't get enough of me (gag), I'm on there as ctevia.

Clutch the Pearls!

2011-03-23T14:39:00.002-04:00

Something good just happened.

Something unexpected and so appreciated.

I called a preschool, a close one, like, right down the street from my house, and I had my defenses up, expecting to be expected to sell them on my kid (which I refuse to do) and fight the familiar fight and the lady was all, "Oh, so are her delays documented?"

Me: Very much so.

Her: Let me check in with my Regional Director and I'll call you right back. I think I have some ideas that could work.

(We had been discussing the whole toileting conundrum and how that seems to be forcing Playette with much younger children, if she's even allowed to register at all.)

A whopping two minutes later, she called back.

No, really. She called back.

Somehow I missed her call, so she left a message.

And she said something like, "We don't see any reason why she can't come here. Please call me. We can put her in with three-year-olds, no problem, and keep working with toileting. I just want to talk some more. There may be times that we need help with understanding some things [about Ds]."

That's it.

Normally, a pretty anticlimactic story, right?

But, unfortunately, not in my world.

This woman was kind, helpful, and articulate.

Amazing.

So now, backwards as it may be, we can finally go visit the school.

Because there was no way I was going to visit a place that would not even consider admitting my daughter.

This roundabout stuff is for the birds, but good things can and do happen sometimes and that's what I'm choosing to celebrate today.

Of course, in the back of my mind I keep hearing, "Now, watch it be a dump."

3-2-1

2011-03-21T13:37:00.006-04:00

Today is World Down Syndrome Day. It's a time to acknowledge all the folks out there sporting the 21st chromosome in triplicate, like Playette.

One of my goals with this blog is to increase positive awareness so that my daughter and all of her friends and all of those that have come before and after her experience just a little bit more understanding of their place in this world.

Because they do have a place.

====

And, just because, here's my post from 3/21/2009.

Pretty In Pink

2011-03-16T13:32:00.005-04:00

Thank you to all who shared their thoughts on the new digs!

I must say that I absolutely love the new layout. It goes perfectly with the vision that I had for a blog update. While I loved my fish (the previous layout was a perfect match to Playette's nursery), it just felt like time for a change. It seemed like perfect timing since I also wanted to debut a new name for this space.

I came up with "One More, More Than One" after writing a very heartfelt first post as a letter to friends and family. I knew I needed to call the site something, but what? I wasn't really in the mindset to be clever, so I went with wordy instead. Still, though, it had a lot of personal meaning for me.

But just as Playette has not stayed that little one-year-old, the blog must, too, evolve.

While (still) fighting the battle to lose weight, I saw this phrase everywhere I turned.

Infomercials for stuff that makes you schweaty: *Results Not Typical

Reality Shows where people lose more in one week than I do in 6 months: *Results Not Typical

Rail Thin Jennifer Hudson: *Results Not Typical

It just made me think...

My life: *Results Not Typical

And I'm ok with that.

So here we are.

If you're interested in working with the very talented Minx, go check out her site. If she can help me? The very non-creative person that I am? I'm sure you're golden.

=====

I'm so grateful for you all. Believe that.

FAQ: The things you may have wondered and many have asked...

2011-03-15T18:25:00.003-04:00

How old were you when you got pregnant/gave birth to Playette?

I was 30, just two weeks shy of 31 when she was born.

Has Playette had any health issues?

Some things here and there, but nothing serious. She's been a pretty healthy kid and we're very grateful for that. To date, she hasn't had any surgeries. While we've had more doctors appointments than some kids her age, mostly they've just been to follow the Ds protocol (check on this, make sure of that, etc.). While she does have a congenital heart defect (a small ASD), everything is fine right now. She's also been cleared by Endocrinology (previously, she took 25mg of Synthroid daily for hypothyroidism).

We began to thicken her liquids in late 2009 after finding out that she silently aspirates via a swallow study.

When did she walk?

She was 20 months old and was motivated by Cheerios during a PT appointment. I never expected it to happen that early and she hasn't stopped moving since.

When did she get her first tooth?

Late. As a matter of fact, the first one popped through just before she started walking. She's still missing a couple of obvious ones in the bottom front.

Flippers, anyone?

Did you all participate in Early Intervention?

Yes. Playette started PT at about six weeks old and had it weekly until she was 5 months and we moved away. After that, we had PT, OT, Speech, and Aqua therapies on a really random schedule. Sometimes it was a lot, others it was hardly anything. It was all about trying to get as much as possible in the beginning and then once we realized that we needed to strike a balance, it tapered off.

I wish I would have spent more time enjoying my baby though. That I do know. You don't get that time back.

What has been your experience with childcare?

Playette was home with me until she was 7 months old. Since she has no siblings, I went through a lot of emotions regarding whether I was going to be able to do enough for her (poor New Mama me) so when the opportunity opened up to have her in daycare, we went for it, hoping for good peer models. It worked well for us and I went back to working full-time soon thereafter.

When we left California, Playette started half-day Pre-K and is now home with me for the rest of the day. It's not our ideal situation, but it will have to do until something better presents itself. Our goal is for her to be included with her peers.

Did you use sign language with her?

Absolutely! Still do. We started at about 9-10 months (too bad I didn't blog back then so I could confirm) and it took her a while to use her first sign meaningfully. I'm glad we didn't give up because now she uses ASL so much to bridge the communication gap and she knows way more signs than we do. We estimate that she knows about 300. It could be more but she knows more than we do so it's hard to say. We swear by Signing Time.

I'd love for Playette to be an interpreter some day. Time will tell whether or not she wants that for herself.

Why didn't you blog the first year of her life?

Frankly, I was a mess. It took me a while to come to grips with Playette's diagnosis. Those first few months were a scary time. I didn't even tell many people at first. I just didn't know how. I had read that people take their cues from you so I didn't want them to have pity on me, which is what I thought would happen if I burst into tears while delivering the news.

So, with that in mind, I stayed quiet pretty much until her first birthday. The blog was my way of squelching the fear and providing some disclosure. It's been a therapeutic process.

But how could you have been upset? Didn't you know that all people with Down syndrome are special angels only given to special parents?

I've heard that. A lot. But I prefer to think of my child as an individual with strengths and needs like anyone else. Receiving her diagnosis did not make me happy as it was, at the time, made to seem like the worst thing that could ever happen in a pregnancy. I know now that is not true. Far from it.

Still, she's a kid that I adore and drives me batty on a regular basis. She's special to me, but not special-special.

Was she diagnosed prenatally?

No. The on-call Pediatrician informed us of his suspicions that she had Down syndrome about 12 hours after she was born.

But she doesn't look like she has it. Are you sure?

Yes. We're very sure. With our permission, blood was taken from our newborn daughter and a karyotype was done. The diagnosis of Trisomy 21, regular old random Down syndrome, was confirmed several days later. Playette has 47 chromosomes, one extra 21st in every cell of her body (we assume), just like 95% of people with Down syndrome.

What about the other 5%?

They either have translocation (two 21st chromosomes plus extra chromosome 21 genes attached to another chromosome) or mosaic Ds (additional genes from chromosome 21 exist only in a portion of the body's cells).

But what about prenatal testing...shouldn't you have known she would have Down syndrome?

I was a nervous first-time mom with access to the internet and lots of time on my hands. Since I never imagined that getting pregnant would just happen for me based on my own health issues, I was convinced from the get-go that something was amiss. I was told over and over (very irresponsibly, I might add) that I was young and nothing in our family history would make it likely that our child would be born with any issues.

With that in mind, plus the fact that the tests that were available at the time were fraught with false positive and false negative results, I abstained.

In the end, I'm glad I didn't know. I think the timing of the news is just the way it needs to happen for each family.

You must be thrilled that she's so high-functioning!

I don't tend to think of her like that. I think that a lot of people just don't understand Down syndrome and the wealth of potential that the people that have it posses. So when they see someone, my child for example, doing things that other children their age do, they're shocked.

Unfortunately, the treatment of people with Down syndrome has not always led to them being able to live their best lives. For many years, people with Intellectual Disabilities were put into categories: trainable or educable. You had to be at a certain "level" to even be given the opportunity to learn.

So, yeah, I get it. People don't know. That's part of the reason why this blog is here. So that we can help to show how the stereotypes and reality differ.

And since I don't go around saying that BD, for example, is more high-functioning than I am because he has an understanding certain math concepts that I don't possess, I won't make those types of of comparisons to my daughter's intellect.

Has having Playette limited what you do as a family?

Not at all. I mean, there are definitely things that are more difficult, but those are moreso related to dealing with ignorance and having to fight for equal rights. Previous generations did that for me, so it's not a foreign concept.

But when you look at our day-to-day lives, we're just an average family. Or something. I don't know what the average family does, but I figure we're close enough.

At the age of 3, Playette has already been to 14 states and Washington, DC. She has experienced both Disneyland and Disney World. She's visited Mexico twice and Costa Rica.

Having her hasn't slowed us down one bit.

(And just to have it all in one place for my future reference, the states are MD, VA, GA, AZ, CA, NV, KS, NY, DE, HI, TX, FL, WI, and PA. Too bad I won't let an extra long layover in IL - where Playette and I met Smokey Robinson - count. We'll just have to go back.)

Why do you move around? Doesn't that make it harder on you regarding schools and building a community?

BD is in the Navy. We go where he's sent, for the most part. It is more difficult, but we're not the first to go through it and we won't be the last. Thankfully, there are lots of other helpful military families out there and we support one another as much as possible. And the people that live inside my computer can go wherever we go.

Also, there are bonuses. Like no co-pays.

I'm nervous about meeting other families who have a loved one with Down syndrome. How do you know so many people?

I've reached out. I wasn't always like this. I used to be nervous, too. That whole first year? You couldn't have paid me to go to a conference or a Buddy Walk or even a playdate. Now, I relish it. Being around people that "get it" is like nothing else for me. I don't have to teach or explain. We can simply BE. I've made lots of friends from all over the world.

So, jump over to some blogs and read along, join your local parent support group and participate. It may be just what you've been looking for.

But, if you're not the social type, that's ok, too. You'll find something that fits your lifestyle.

Why does the word r*tard(ed) bother you? It's not personal.

It is to me. When used as slang terminology, it is never in a positive way. Typically, it's the butt of a joke and always has a negative connotation. MR is part of my daughter's medical diagnosis so every time the stereotype is perpetuated that she is less-than, it hurts my heart. I also cringe when I hear "special" or "short bus" jokes because it's the same principle.

Why do you go by nicknames?
I love the interweb and all, but it just makes me feel better.

Ch-ch-changes

2011-03-12T17:16:00.000-05:00

Coming soon.

Don't be scurred, ok?

The Great Race to Nowhere

2011-03-12T15:07:00.000-05:00

That's kinda how I'm thinking of potty training/toilet learning. Whatever it is you want to call it, the bottom line is all the same: The lack of need for expensive incontinence products.

Wait. Unfortunately, that's not it. That would be too easy. What I've learned is that not only do you get the pride/bragging rights that your kid can pee or poop in a pot, but a completely whole new world is opened to them.

Did you know that? I didn't.

I think it's crappy that my kid is not able to join a class at school or get involved in a rec center program or a myriad of other things because she happens to wear a pull-up or, on a great day, panties covered with a bulky plastic overlay.

See, my issue is that if she can count and knows her alphabet in two languages and gets along well with others, WHAT THE FLIPPING FLIP DOES THAT HAVE TO DO WITH WHETHER OR NOT SHE TELLS US SHE HAS TO GO?! WHY DOES SHE NEED TO BE IN A CLASS WITH TWO-YEAR-OLDS?!

Ahem.

Obviously, this is an hot button for me today.

And, trust me, I do get that staffing and money drive all of this. You need more people in a class that has children for whom toileting is an emerging skill. The ratio changes. Smaller ratios cost more money. Blah, blah, blah.

But it feels like another acceptable form of discrimination and lord knows we've got enough of those already. ("Will you accept my child with Down syndrome into your preschool program? No? Oh, alright then." - gag)

If my child is developmentally ready to learn age-appropriate things but she can't control her bladder, she doesn't move on. Basically. And I'm supposed to be ok with that.

This all ties into my last post where maybe it wasn't clear but...I am not fine with how that whole thing went down. But finding other placement for Playette? It's hard, yo. Because of all that stuff I just rambled about. No academics for girls that still tinkle in their dipes.

And that makes me think about this long, long road we've been on.

If you'll let him, BD will tell you all about how he was PT'd in the womb or something close to that. No, seriously, he was using the toilet really early.

So, when Playette was approaching two and he wanted to get her started, I was all, "Why not? We're supposed to treat her just as we would if she didn't have Ds, so if he's all motivated, let's go."

She was successful. And those days success looked like timely release. She knew that sitting on the potty meant it was time to go.

That was almost two years ago and we've gone through a lot of up and down since then. There were several occasions when I thought that she was going to be 100% PT'd any day now, and then I was happy with her being "schedule trained" and then there were others times (like when BD was deployed) when I thought that we were all the way back to square one.

We've tried having multiple Ikea potties stashed all over, a soft, cushy potty, inserts on regular-sized toilets, coloring books with stickers, and even an iPhone app that got her to go in a freaky Pavlovian kinda way.

In retrospect, we're just not as far along in the process as I had hoped we would be two years ago. I really, really wanted to believe back then that my kid was gonna be all Superstar Pee Pee Girl, but what I think I did instead was just stress myself the hell out for way too long about something that could have waited.

Every morning for the past few weeks, I've packed up a grocery bag full of pants, shirts, socks, underwear, and plastic covers. The school said that she was ready to take the next step and I was grateful for the assistance and support.

Every night, I did the laundry that came home. For a while, she was coming back to me in the same outfit she left in and I was getting notes that said things like, "She was dry all day!" That felt like good. Like progress. Like I could really start signing her up for classes at the rec and securing placement in an age-appropriate setting that had zero tolerance for teachers with no people skills.

And then, yesterday, on Friday, I got a letter.

"She is not physically ready," they said. "She is inconsistent in staying dry."

The school is giving up.

I know that I can't do the same. I don't know how to just stop when I know that she's trying, that she's proud of herself when she gets all the stars to align.

But I'd be lying if I said that didn't take the wind out of my sails.

Peeing in the toilet does not dictate how wonderful and capable my daughter is.
Peeing in the toilet does not dictate how wonderful and capable my daughter is.
Peeing in the toilet does not dictate how wonderful and capable my daughter is.
Peeing in the toilet does not dictate how wonderful and capable my daughter is.
Peeing in the toilet does not dictate how wonderful and capable my daughter is.

I'll let that marinate a bit.

Oh no - not you, too!

2011-03-02T14:40:00.000-05:00

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.

==========

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.

==========

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.