Thursday, January 28, 2010

Words

I've been posting a lot of pictures lately, but not doing a lot of writing. I actually enjoy writing so I figured I'd give it a try today.

Things have been going fine at our house. We keep busy, which is good for the most part. The next few weeks will be more of the same, with a few special surprises thrown in that I'm looking forward to sharing soon.

For today, though, I feel like exploring Playette's Daycare Experience.

Someone asked me the other day about her classroom setting and how she relates to her peers. It's a very interesting topic, apparently, to people who don't have children with special needs. Those of us that do, well, sure, it's interesting, but it's also a major PITA sometimes because we're the ones working diligently behind-the-scenes to make our children's placement look effortless. There's a lot of thought and consideration put into trying to figure out where and when and who and why and, most of all, how.

Currently, Playette is "fully included" in a typical toddler room setting. Her peers are other 2-3 year-olds, most of whom do not have Individualized Family Service Plans (IFSPs). I think one other kid in there gets speech services, but I don't really have a need to know that information so no one has come out and told me that, which is fine by me. That tells me that they're not going out and telling other parents stuff about my kid either. And I like that.

So.

In her classroom, Playette, well, she plays. She reads, she sings, she dances. She takes things down, she puts things up. She pretends and she communicates.

She goes into the room each day, takes off her coat (with some assistance), walks over to the sink, and washes her hands. That's what all of the children are required to do and she is no exception. This routine started back when she was in the baby room and we had to hold her above the sink and wash her hands for her. That was two years ago. Now, she turns the water on, pumps the soap foam into her hands from the container on the wall, rubs her hands together, rinses, pulls the lever on the towel dispenser, rips off what she needs, dries her hands, and throws away the used paper towel.

Awesome.

It only takes a minute to complete, but when you lay out all of the steps like that, it's hard not to feel proud.

One goal, I think, of having her where she is right now is to get certain things to become second-nature, to expend less effort on certain behaviors.

One day a few months ago (woo, time flies!), I was there in the classroom for lunch. I was able to witness how when the children were done eating, everyone got up with their plates, took them to the trash, dumped the waste items, put the plates in a bin, washed their hands, and went to lay down on their cots for a nap.

Wow.

I mean. Wow.

I was so impressed. There was my little girl, doing the same things as everyone else. No hesitation and full of confidence.

Now, of course I realize that she still exhibits delays in her development. I know that now and always will. But I think there's something to be said for keeping expectations appropriately high. I mean, even with me, I notice that I sometimes get a little too excited about things she does. And when I stop to think about it, I realize that maybe I thought she wouldn't be able to do such things.

*gasp*

Me? Her mother? Underestimating her?

Well, shoot, I'm not perfect. Nor have I ever claimed to be. Enlightened by force, maybe, but I still have a long way to go. I get just as irritated with myself for such behaviors as I do with other people I meet, especially therapists and medical professionals.

But you know I have less grace with them, right? They should know better. Me? I'm just a newbie.

I just want my kid to be given chances to prove people wrong.

This girl is smart, y'all. Really.

She doesn't speak, but she signs more than I can understand. She picks things up quickly. She constantly has conversations through babbling that utilize inflection and even humor.

You gotta appreciate a two-year-old with a fake laugh.

More than anything she tries. Very hard.

And that's why me and my fellow parent peeps work equally as hard to give our kids the opportunities they deserve.

It's all about having options, y'know?

So, anyway, when you put Playette up against her classmates, what differences might an outsider notice?

- Well, she still wears a bib (hate!) because she's the only one still actively teething and, thus, is a drool monster, which doesn't work well when it's cold and her two shirts are soaked through. So, yeah, a bib. (that issue deserves its own post)

- She's tied for last place in the height department.

- She's a slower runner.

Aside from the bib thing? Well, that's pretty much me, too, so whatever.

Monday, January 25, 2010

Once Upon a Time in Mexico



Friday, January 22, 2010

Charm School

The storms were pretty bad around here the other night, so BD unplugged all of our lifelines big electrical stuff. Instead, we sat in the kitchen and worked ever-so-intently on our posture.

We are so gangsta! WHAT?!










Sunday, January 17, 2010

Pants on the Ground

When I saw Playette walking (and dancing) around like this this morning, one thing came to mind.




I haven't even watched this episode of American Idol yet, but General Larry Platt is everywhere. In case you have no idea what I'm talking about, click here.

Very apropos, I think, since Mr. Platt was a mentee of civil rights movement leader Martin Luther King, Jr., whose birthday is being observed tomorrow as a national holiday.

Also, speaking of AI, and because it seems everything has a Ds connection these days, I'll be checking out Maddy Curtis in Hollywood. I have a love/hate relationship with this show, but watching those few days are always my favorite part.

Saturday, January 16, 2010

Tongue Talk

I'm sure that most people know that there are certain characteristics that people with Ds share. Just as with any other group of people that identify with one another, while they share some things in common, those things do not make them identical. To a keen stalker observer, though, one may be able to pick out a person with Ds in a crowd. Or you may not. Really.

All people with Ds do not look alike.

Every person with Ds does not exhibit every physical trait associated with the condition.

I just had to get that out.

Y'know, in case I haven't mentioned it here (enough), saying to someone that their child doesn't look like they have Ds? Not really a compliment.

Because if they do, they do.

Ahem.

Really, I wanted to talk about something else tonight, but that damn advocate hat just jumps on me sometimes.


I swear, there's no going back after your life has been changed the way mine has. It's not bad, just different.

I hope I'm still fun at parties.

Anyway.

So, back when I was 31 weeks pregnant with Playette, months before her diagnosis and several years after I stopped my previous blog on which I had a whopping four posts over the course of a year or so (obviously, I didn't have as much to talk about back then), I had a 3D ultrasound.

I remember that experience pretty well. As a frugal person, I was very excited that I didn't have to pay $150 to get it done because I was "fortunate" enough to have this really-minor-probably-nothing-actually thing going on with my baby's heart (so I thought) that got me access to the high-risk clinic with all of its magic technology, gratis.

I had already been admitted to the hospital because I had some funky virus thing happening and I hadn't figured out a way to break free yet. That came later.

So, that day, I only had to be wheeled down the hall with BD at my side to take a look at the echogenic focus (EIF) that had been seen previously during my routine ultrasound at 20 weeks.

While I was an avid internet reader and knew all the right questions to ask at such an event, there was never a medical professional that I encountered during the course of my pregnancy that ever dared to utter the words "Down syndrome."

I mean, really. I was 30 years old and healthy and we had no such thing in our family history so why should they have?[/dripping sarcasm]

But. I had a very good friend who was also pregnant at the time. About a month ahead of me. And when she had her ultrasound, her world stopped for about an hour because her baby also had an echogenic focus and, unlike with me, her peeps made quite the big deal about the EIF being a soft marker for Ds.

I say all this because when the Cardiologist reviewed Playette's teeny heart in the womb (the EIF was no longer present, though she does currently have a small ASD) and I asked if there was any chance that my baby would have Ds, I was quickly poo-poo'd as he told me something along the lines of, "Look at this baby. There is no reason at all for anyone to suspect Downs. There are no obvious features here."



Which is funny now (though I can't help but think how irresponsible that was of him) because check out her tongue in the second photo.

To this day, Playette presents with an open mouth posture and a protruding tongue (check out that hip lingo). For the first year of her life, it tore me up. People would mention it all. the. time.

And I would cry all. the. time.

Now though? Now, I realize that it's just a part of her and that she's in great company. One day she'll probably move past it as we continue to work with oral-motor tools and the rest of her teeth eventually come in. But maybe not.

This classic Rolling Stone's logo tee was a surprise gift from "Finn's Mom" Lisa. Some of us ladies were talking one day about the discomfort of having people look at your kid like something's wrong with them (pshaw!) and how awkward it can feel to have a l'il licker on your hands. It felt good to share and then be able to find the humor in the situation. These are our kids and we love them dearly. Thank you, Lisa, for helping us to feel empowered and for giving me another opportunity to show off yet another basket full of dirty clothes.



I am so thankful for my widened circle, full of people that either tell me about about their family members or send an encouraging email just because. I am grateful for other parents who share their stories and friends of friends that read here because they care enough about us to see how we're doing from time to time, even though they've never met us. I appreciate you all.

Rock on.

Wednesday, January 13, 2010

On-the-job Training, Pt. 1

Before giving birth to Playette, I wasn't what anyone would consider a master hairdresser. I was blessed with a full head of the stuff and have always struggled to keep it in a manageable state. Currently, never letting it get longer than 1/2 an inch is my method of choice.

I've talked before about the 15-30 minute per day struggle that is combing Playette's hair. As well as what it looks like when I don't.

I came across these recent photos and found the expressions on her face simply classic.

Don't worry. No toddlers were harmed in the creation of these photos. Which were taken in an airport. Because I was desperate.

During:

(She is so dramatic.)

















After:

(I didn't even get to the back. But at least my cornrows are improving!)



Thursday, January 7, 2010

Silly Grown-Ups

Let me preface this story by saying that two of Playette's favorite things are dogs and babies.

She signs dog sometimes, along with the corresponding "duh! duh!", and I'll look around and sigh, "No, Boobalicious, I don't see any dogs," and then I do another visual sweep of the surrounding area and quickly backtrack and say, "Oops! There it is. You're right. There's a dog."

I've checked the direction of Playette's gaze and wayyyy over there on the corner, waiting to cross the street, is a dog. Or there was the time where she signed dog and said "duh! duh!" when we were at the ENT's office waiting for an appointment. Even though I figured that the nurse had no idea what the Littlest One was saying, I blushed and said, "No, no, she's not..." and then...wait...she has a dog on her shirt! Foiled again.

I really need to stop doubting this kid.

She spots babies with the exact same intent and preciseness.

So, yesterday, we were sitting at the dining room table with the Speech Therapist (ST). She was there to watch Playette eat breakfast and give us some feedback on the whole liquid thickening process before she takes off very soon for few months of maternity leave.

At one point, the topic of the baby's imminent arrival came up.

Playette was all, "Wait. Baby? Where?" and we pointed to ST's belly.

Since we obviously didn't understand what she was asking, she gave us her "what?" gesture, which is the universally-known shrug of the shoulders and hands out to the side.

That's when it hit me.

I'm about to start this whole "Where do babies come from?" thing with my two-year-old.

We assured her that the baby was indeed in ST's belly one more time and then had to laugh. Playette wasn't buying it and you could see it all over her face that she was losing confidence in the people that are supposed to be here to guide her.

You could almost hear her thinking:

"Babies come from strollers, not bellies."

I'm totally ok with that. For now.

Tuesday, January 5, 2010

Disability really *is* natural.

They say that disability is present in 20% of the population.

So 1 out of 5.

It was true here, too.


That guy right there? He soared with the rest of them.



Saturday, January 2, 2010

Day 1

Yesterday, when our house became Bowl Game Central, Playette and I dipped out for some mama-daughter time. As the time gets closer and closer for us to move, I feel like it's important to take full advantage of the benefits of our current hometown.

So, yesterday, we went to the beach. Awesome, right? So how come we never go?

I packed up the truck with the jog stroller, a plastic blanket (do those things have another name?), snacks, books, and the camera.

I don't know why we haven't been doing this the whole time! Playette had fun and was pretty worn out by the time we were heading home. I'll have to add this to the list of things we can do when we think there's nothing to do. Seriously. I don't know how many times a day/week/month we'll be sitting here, especially on the weekends, saying we have nothing to do. I should get some of those window markers and just make it super plain. Maybe then we'll take our own hints, ya think?












Friday, January 1, 2010

I Wonder...

Back in November, I posted about a chance encounter with a woman on a similar parenting journey to my own.

Today, I read an article about a young man who fits the description of her son.

I wish now that I had continued to walk with them that day. That I had asked her name, or his, so that I could be positive that this is him.

Regardless, a nice story.

If you'll be watching the Rose Bowl today, be sure to check the sideline for Seth Ford.

Go, Ducks!