Buddy Walkin': NYC Part II

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!

For My Next Trick...

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

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.

FYI

As Requested

Oh, wait, before I give you the intro to the video, that whole New Dora thing? Ergh. This morning, Playette revolted.

But.

The point that at least it goes by faster is a good one. And it is easier to see her two front teeth when she's crying.

Anyway.

So, one of my friends loved seeing the videos of Playette and requested more. I will try to oblige with some new material in the future, but, to tide you over, here's a favorite clip of mine that Michelle took at the Ds Awareness Walk in WI (co-starring Lily!). I am so glad she caught this because I, very absentmindedly, left my camera at her house. Of course, I didn't know that we'd be called up on stage for the "Silly Pizza" song (!), but still, I'm kicking myself. Thank goodness for friends.

Day 1 in WI: Promised Pics

Since I am legalistic, this is yesterday's post (I passed out on the couch last night before I got a chance to get it published). I still have to write something for today. 31 or bust!

So, while the two 3s were making their way to Friendville and Lily was temporarily keeping a safe distance...


...Michelle and I, thanks to her wonderful husband taking charge of all five children, made out way to the Elk Lodge to hear Rachel Coleman give a presentation.


If you don't know who Rachel is, you've obviously never been to my house. In my house, and many others, she is an icon. She is, in her words, "a rock star to preschoolers." And it's true!

Though, I must admit, I love me some Rachel as well.

She has played a significant role in my child's development. The program that she co-created with her sister, Emilie Brown, has brought communication into our home well before Playette was able to speak. And that's HUGE, people. HUGE.

So, not only does my kid have a second language that connects her to so many more people, she can tell us her wants, needs, and desires, and has been able to do so in increasing complexity for a long time now.

Plus, she can impress people with her mad signing skillz. I can't say that I don't enjoy that. Take that, stereotypes! My kid can learn, and teach, yo!

Rachel told that room full of parents her story and how it related to the creation of Signing Time. She shared with us how she dealt with unexpected challenges. She had me BAWLING. And then she sang, which made it that much more messy for me.

It was a great messy though. I'm so glad that I had that opportunity.

After a lot of chatting and snacking once the presentation was done, Michelle and I headed back to the house. But first, we stopped at the grocery store, where I discovered that that whole Packer thing?

It's serious.

Not only was the whole store decked out in the signature colors, but so were the snacks.

Check out these Rice Krispie treats.:


How can you not love people that color coordinate their snacks?

I have to wonder what the cashier was thinking when we stopped to take this pic. I mean, it was midnight and I was being a total tourist.

That reminds me. I look really sleepy in this pic, huh? There's a good reason for that. I had had a long couple of days. In my next post, I'll tell you why.

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.

Some More Signs

Ok, so my daughter officially has me beat. She knows way more signs than I do now. I'm having

Here's an update before I forget:

backpack
principal
home
ready
blocks
bed
pretend
paper
pencil
brush teeth

She even attempts to finger spell 'pen' and 'glue', which is just hilarious to watch because she can't sign letters yet. She moves her fingers around though, so, yeah. She kinda gets the concept, though even I can't tell what she means unless it's in the context of watching a ST episode. We won't count those just yet.

Which reminds me of something. While I think it's great that Playette is picking things up quickly, and I love when she makes people's jaws drop when she signs words like 'principal', I don't know...should she be signing words when she doesn't really know what they mean? I wonder what the point is, though...would I even be asking this if she were saying 'principal'?

Hm.

Probably not.

I do point out the daycare director and tell her that she's her principal though. Hopefully she's making a connection.

But, if not? Whatever. She's happy so I'm happy.

Aaand my baby girl just came over and signed 'more mama' while reaching up. Post over.

The Post Where I Sound Like a Total Fangirl

If you have a desire to start signing with your kid or simply want to add to your collection at a great discount, check this out.


Signing Time totally gets the Playette stamp of approval.

Actually, BD and I love her too because Playette loves her so much and we can get a break every now and then while she stares, completely infatuated, at the TV screen. She even turns to look at us from time to time like, "Are you guys seeing this?! Isn't is FANTASTIC?!"

Almost every sign we know is due to seeing it on ST. Playette can communicate with us through ASL and it's amazing.

Happily Birthday and Thank You, Rachel!

Oh! And if you're in the DC area? (Like I wish we still were right about now) There's going to be a Signing Time show at the DSANV Buddy Walk next Saturday. [/jellus]

Edited to add:

If you've never seen or heard of ST, and you're all, "Wha? Who?" then here's a preview:

Signs and Speech

I've been trying to keep up with Playette and her mad communication skillz, but it's hard!

So here are a few more signs she's been using lately so that I have them written down for safe keeping and all. I've linked them to ASL dictionary videos so that you can see what they look like.

Flower

Football

Pay attention

School

Bear

Chicken (the sign we use is actually more of a combination of these two - first you make the beak mouth and then you peck your hand like a chicken eats)

And here's some video of the Littlest trying a few on for size:




For any of those new to the blog, and in honor of Ds Awareness Month, I should elaborate. Playette can hear perfectly, or at least pretty close to it, so far as all tests have indicated. She, and other people with Ds, may use sign language as an alternate form of communication if they are either waiting on emerging vocal language (as is the case in our house), do in fact have a hearing loss, or perhaps maybe they use it simply as a preference if they do not have clear speech.

We've been signing for Playette for probably about a year and a half and she picks it up really quickly now. In fact, we haven't been actively teaching her many signs for months. She's getting them from Signing Time (she loves to watch while I comb her hair every morning) and we're having to catch up with what she's learning for the most part.

She has a few clear words, but many more word approximations, which means that she tries to say things and people that are around her a lot may be able to interpret what she means, but the words don't come out as clear as they one day will.

Speech and language delays are not uncommon in children with Ds, and like other developmental milestones, they will be met in time.

Playette is currently receiving one hour of Speech Therapy (ST) per week at her daycare through our county's Early Intervention (EI) program.

Book

Give Me a Sign

A request was made of my by Playette's primary caregiver in daycare a few weeks ago. She asked me to write down which signs The Littlest knows.

"Sure. Why not?" I thought. How hard could that be?

Never mind the fact that I had already provided such a list to the last room she was in (she recently moved from Pre-Toddlers to Toddlers) and I left a copy at the front desk for her file. I figured it would take me five minutes, max, to update the list.

You know one was nowhere to be found, right? So much for providing continuity. Obviously no one has been signing with her during the day.

Oh, and the third copy? The one I kept for myself at home? Who knows where that is.

But it's not like anyone is paying me to keep good records. So I totally get a pass.

Today I'm calling the list complete. Finally.

I know there may be more signs she knows, but, frankly, I'm sick of all the little sticky notes I've been keeping track on being everywhere. Tomorrow morning, I'm sharing the following:

Sleep
Baby
Want
Fish
Read
Help
Table
Water
Apple
Banana
All done
More
Milk
Eat
Food
Please
Thank you
Bye bye
Hi
Friend
Car
Potty
Music
Together
Star
Cat
Dog
Bird
Fish
Cheese
Cracker
Cookie
Mama
Daddy
Book

I think we're up to 35.

And I'll be sure to give a copy to the front desk. Again.

Wait. Doesn't she also know "car"? And what about "french fry"? Along with "sink" "like" and "wash hands"?

Oh, I don't know.

Honestly, I know we've slacked off with the signing lately. Once Playette turned two about six weeks ago, right around when she started showing us that she had the both desire and the capacity to learn signs quickly, I started getting that nervous feeling. The one that walks right alongside the thought that I will never hear her speak.

Now, when we decided to start signing with Playette, I was very adamant that it would not have a detrimental affect on her verbalization. If anything, it would help keep her from being frustrated while waiting for her practically inevitable delay in communication to run its course. So less tantrums and all of that. It was going to be good for all of us.

Right?

But when you have a two-year-old that doesn't speak, it doesn't matter what you thought when they were seven months old. Because, really, most kids aren't talking at seven months.

But when your kid is two, all that matters is that your kid's peers are speaking and your kid isn't. Something must be wrong.

Damn the extra chromosome, something must be wrong.

It's very easy to jump to the other end of the spectrum regarding sign language.

It's a solid argument: Why give our kids with 47 an easier way out? Why choose the path of least resistance? Force them to speak. Keep the expectations high, just as you attempt to do in every other area. Treat them just as you would a child that has 46 chromosomes.

*sigh*

I still don't know, really. Please don't think that I think that I have the answers.

Case in point: Last Friday, at the conference, during the presentation of the person who literally wrote the book on communication as it relates to children with Ds, I was thoroughly and completely convinced that Playette was displaying classic symptoms of Childhood Apraxia of Speech.

I wasn't going all hypochondriac either. Or so I thought. It was like the light came on and I was like, "Oh, so that's what it is."

But then I told BD and he looked at me like I was crazy.

And he explained to me, step by step, why I was wrong.

Then, apparently, (and obviously my child is out to make me look like a fool because none of this kind of thing ever happens when I am around) on Sunday, not 48 hours after I had stood in a room of approximately 100 people and announced that I had diagnosed Playette with CAS based on the six Power Point bullets currently displayed on the big screen (yes, I actually did this - surprised?), she put on a show of just how verbal she truly is in front of the very same woman (BD was taking his turn in the session while I was elsewhere...probably moping about this very issue). So much so that BD says that she was all, "This little girl is right on track," or something. Like I said, I wasn't there. But other parents were impressed and inspired, apparently. And we should be proud of whatever it is that we've been doing to help her get to this level. (Trust me, I don't feel like we do much of anything, let alone the elusive "enough.")

Geez.

No one ever said this would be easy.

I don't mind being wrong this time though.