Sunday, October 31, 2010

In His Own Words: BD

BD checking in

Wow, funny how time flies!

It feels like it was just yesterday that I was writing my Halloween entry for last year. Here we are a year later: wiser, older and more battle tested.

We are having a lot of fun on this journey. Things aren't always perfect, but hey, nothing ever is. We've watched Playette grow by leaps and bounds this year. We have so much fun doing all the things we do. Lucky for us she's a great travel partner (part training, part instinct
I'm sure).

As we've traveled to different places around the world, I continue to be amazed at how the li'l crazy has this amazing affect on people everywhere, no matter where we are or what language they may be speaking. Be it a simple "Hi", a smile, giggle or wave...she just connects with everyone.

It has also been really great to watch her and the momma connect. Their relationship has blossomed into that something awesome that mother-daughter's can only experience. I'm guessing it has a lot to do with singing, which is something this guy doesn't really do to well, but Playette loves her mom's voice!

I consider us to be the luckiest parents in the world to have the littlest rolling with us!

This is BD signing out til next Halloween!

Normal Syndrome Redux

I posted this a couple of years ago and something brought it to my mind again today so I figured I'd re-share.

I'll leave my thoughts at the beginning because they're still relevant, minus the "heading to the Buddy Walk" part.

Reading this again makes me a little sad. It's not that I want everyone to be stunned into silence and immediate worry instead of experiencing the more common joy when their child is born. It's that I wish that I, and others like me, didn't have to be.

I really wish that I had been strong enough in that moment to say to myself, "It's going to be ok. These are just statistics. She is our baby and we will love her and, starting in this very moment and until forever, we will enjoy the place she holds in our lives."

It's really hard to do that when people are screaming as if the worst possible thing has happened when you tell them the news. (By the way, it's not.)

Not me. I didn't scream. I was just crying.

I cried for a very long time.

I cried for the mental retardation and the hearing loss and the shortened life span and the cruelty of others and the fear and the heart defects and the short stature and the slurred speech and the teeth that would be delayed and out of order and the spine and bowel and vision issues.

Mind you, those were only possibilities. But they were delivered to and received by me as facts.

And that, to this day, still hurts.

Life is a crap shoot, y'all. You never know how it's going to play out. I'm learning now to wallow in the good times and try to be prepared for the not-so-good without letting that preparation consume me so much that I'm missing out on the aforementioned goodness wallowing.

It's a delicate balance, a hopefully graceful dance.

Thanks for reading, y'all.

=====

We're off to the Buddy Walk shortly and I don't know what kind of day we're in for, so I'm posting something I didn't write. It's not meant to offend, just to help folks who have never had a child with special needs to understand what parents like us go through when their child is diagnosed. It's unfortunate that there's so much sadness, but you really have to fight to remain happy when the news is delivered like this:

Edited because I would be remiss not to add that "typical" or "typically developing" are terms much preferred over "normal"...I didn't want to miss a teachable moment here. Many parents don't like to hear that others don't think their child is "normal" or that something is "wrong" with them.


"I'm very sorry, I have the results of the genetic tests and they have confirmed our suspicions that your fetus is what we call...Normal.

Some people prefer the terms "Ordinarily Challenged" or "Normal Syndrome". The syndrome can be easily identified by a complete lack of any interesting genetic characteristics. I know this will come as a shock to you, buy you should be aware of what this is likely to mean.

If your fetus manages to survive the rest of the pregnancy and the birth, which is becoming more common these days, he or she will face some daunting challenges. Children who suffer from normalcy are prone to health and psychological problems. It is almost certain that the growing child will suffer a seemingly endless stream of viruses. They will frequently damage themselves, and sometimes others, from their excessive energy.

Their relentless demands will put a strain on your existing family and, of course, your relationship with your partner will suffer, and possibly end in a painful and acrimonious separation. Any children you already have, even if they also suffer from normalcy, will be jealous of the newcomer and all their extra attention. Many siblings are liable to be psychologically scarred by the new arrival.

I need hardly mention the financial consequences, although disastrous, they will be nothing compared to the emotional turmoil your life will suffer.

After a while, you may be lucky and find they can be kind and loving young children. They may find some temporary happiness in things such as music, dancing, food or playing with toys.

But if they survive early childhood, a Normal child is almost certain to grow into a Normal adolescent. Your years of sacrifice will be thrown back in your face as they become disobedient, wild and reckless. Unable to find happiness and contentment, they will treat you with contempt until they manage to leave home. Even then the suffering will continue as they will often return to try and extract money. They will blame you for their own faults and leave you bitter and twisted.

They may well become criminals, over a quarter of Normals will have trouble with the law, many will spend time in jail. Many will have problems with alcohol or drug abuse. Normal marriages are often unhappy and short and over half end in divorce.

Even if they become successful this is likely to be because of the often observed tendency of Normals towards excessive greed. The chances of them sharing their success with you are remote and they will tend to see you as an embarrassment.

Finally, Normal people are likely to die before their time. 23% will die of cancer, 33% of heart disease. Hundreds every year in this country alone are so distressed by their condition that they take their own life. I'm sorry to say that many will have had a lonely, painful and pointless existence.

I am afraid that Normal Syndrome is a genetic condition that affects every cell of the body, and so is impossible to cure."

By Anon.

Saturday, October 30, 2010

Party All the Time

I was just sitting here thinking about all we did today and all that's yet to come. And then I started yawning because it makes me tired.

Playette had her trick-or-treating walk around with a bag and get snacks deposited therein "Spirit Day" equivalent today at preschool, followed by a costume parade at daycare this afternoon. We have SO MUCH CRAP in the house now. With even more to come. And I've been eating it. Along with copious amounts of pumpkin bread that I made today. But I still want more candy. I am weak.

Anyway. So tomorrow there's a party in the military housing community center. Those are usually good, so we'll go. We skipped the party in the other military neighborhood today. I just didn't have it in me to run from one end of town to the other.

We did end up stopping by the Navy Lodge though. They had a 40th Anniversary celebration that included cake, a bounce house, cake, cookies, hot dogs, cake, pumpkins, cotton candy, nachos, and cake.

Honestly? I didn't have any cake.

But I really wanted some.

Can you tell?

So I came home and stuffed my face with pumpkin bread again some more.

Whoopsie.


Ahem.

After the early afternoon party tomorrow, our neighbors on the next street are hosting a huge shindig for the kiddos. We'll go there, too. I mean, how can we not? They know how to throw a party. It lasts until "until" so you know it's gotta be good.

Sunday sounds like a nice day to sleep, doesn't it? Trick-or-treating is still kinda up in the air.

=====

The house is quiet so I started clicking around on the computer and came across some pictures of my Playette-ita. She was sooo teensy. I used to say that I could put her in my pocket. Cuteness, y'all.

I keep forgetting that I didn't blog that first year.

That was either the best or the worst decision. It's hard to say.

But what that means without question is that you missed out on Little Miss Pudge. And the clip on bows!

Wanna see?

Be thankful that my desktop is still out of commission. That's the one that has allll the pics on it and I'm sure that if I had access to the stash, you'd be inundated with Playette-ita images right about now.

I'm pretty sure all this nostalgia of late is due to a family member having a baby the other day. It just made me think back and realize how fast it all went. I mean, I remember when the new mama was Playette's age and it just seems so...whew. Like, really? How?

First Two Halloweens

Last Year

Today at breakfast:



Friday, October 29, 2010

FYI



The Great Pumpkin (Patch)

So, we did go to the field trip to the patch yesterday. Turns out, it was in the middle of flipping nowhere, down a street that I'd never, ever known existed, surrounded by lots and lots of produce-filled farmland.

It was awesome.


They had a corn maze and bounce houses and really big veggies.

There were chickens and pheasants and really loud honking geese.


There was also a dark walk through, punctuated with freaky scenes at every turn, that made me wish I had more than one flashlight and forced me to woman-up and press through after everyone had deserted us, me with a three-year-old wrapped around my neck like a fur stole, because I'm the mama and someone had to be brave up in there and I couldn't exactly let the other parents see me have to be rescued from crying in a dirt-filled corner by one of the staff, right?

At least Playette's shirt glowed in the dark. That helped a little by introducing some whimsy into the situation so that I wasn't completely obsessed with thoughts that we would never see daylight again.

Seriously? I don't know why they thought that preschoolers would be ok with that thing. It was mad scary, yo.

I didn't have too long to be freaked because after we got out, there was a group of people with Ds waiting to go in. That made me smile.

I also wondered where they were from. Their ages ranged and I really was curious about them. But, I just smiled and moved along to let Playette see the bunnies.

Some days, I wanna be all "DESIGNER GENES! PEEPS!" and then others? We just are. And they just are. And that's ok.

And just because I'm looking at some more of the pics and I cannot get over how big my baby girl has gotten, I'll share those here, too.






Unbelievable.

Thursday, October 28, 2010

Back in Business

I got my laptop back about an hour ago.

AND IT'S WORKING!

Obviously.

I'm so excited and so grateful for friends that know more about technology than I do.

I mean, I did ok without my computer, but I must admit...I miss it when it's gone. I try to make sure to live my life away from this thing, but I do get a lot from it.

For example, all of you. You live inside my computer and I find that kinda awesome.

So, to show you how thankful I am that you are back inside my rehabilitated computer, I will give you real posts again starting tomorrow.

Until then...

Tuesday, October 26, 2010

I'm tired just thinking about it.

Tomorrow begins the whirlwind of Halloween/Harvesty Goodness Pandemonium 2010.

Playette's preschool class is going to the pumpkin patch in the morning (my first field trip as a mom!) and then there are parties and parades and requests to wear costumes for the next several days.

And then there's Sunday. I figure that Playette is now old enough to start learning about the age old tradition of begging trick-or-treating, so we'll give that a try, too.

(If you watch the show Parenthood, maybe you'll remember the scene where they tried to teach Max about trick-or-treating. I had to laugh at that. I'm sure that if Playette could articulate it as well, she'd have a similar reaction.)

Oh, and her costume? Welll, I kinda lost momentum in that department. I'd see things I'd like and then they wouldn't have her size or were sold out or wouldn't get here in time, so we're going more abstract this year. No definitive character or concept. Unless you count glittery, tutu'd, winged, tiara'd 3-year-old as one of those.

If we make it to Monday in one piece, I'll count it all a success.

Monday, October 25, 2010

Crash!

Our laptop is down for the count (please get up!) and the monitor for the desktop died.

Yes, at the same time.

Grr.

I hope to be back in normal posting shape by tomorrow.

Sunday, October 24, 2010

Self-Advocates Speak



Turkey

Today, we attended our third walk this month in support of Down syndrome Awareness. It was also our third year at the Bay Area Buddy Walk.

It's not that I just loooove Ds so much that I feel the need to walk in circles in three different cities for it. (I've had people ask me, "Why so many?") What I do love are the people. I love the sense of belonging. I love the bounce houses and live entertainment and the self-advocates and, well, the lunches are greatly appreciated, too. Plus, for us, this year, the timing just worked out really well so that we could attend all three.

Since Sheree made it nice and easy for us, Playette and I got all dolled up in our finest walking outfits. They were a huge hit. Again.

Prior to last week, the most dressed up we got was to put the event t-shirt on over what were already wearing, so this was a bit of a change.


Honestly, I didn't mind wearing my tutu again one little bit. I don't think Playette did either. There's just something about a tutu, y'all. It makes me feel even more sassy than usual.

We had a great time. There was threat of heavy downpours, but, for the most part, we stayed dry. We walked, we saw friends, we ate pizza and cookies, only one of us jumped in the bounce house (boo!), and we won Signing Time stuff in the raffle (yay!)



After everything was over and we were about to head home, Playette made it halfway to the car before she decided that she absolutely needed to open the ST bundle right then and there. I was tired, so I relented.



Our friend, Jen, was also kind enough to give me this necklace she made and I just love it. I'll be sure to wear it proudly in the years to come, as we move from city to city, as a reminder of the great friends we've made along the way via our Littlest.


BTW, Jen? Playette is already singing along to that cd. ;-)

Saturday, October 23, 2010

Problem Solver

You know, I think that Playette may be afraid of the dark.

(When do kids start doing that, usually?)

She doesn't cry or whine about it though.

It's really interesting to observe.

She goes to bed pretty easily. I tell her that it's time to go to sleep and she recognizes the routine and I can pretty much follow her lead at that point. Sometimes, she even tells me, via sign, that she's tired and we go from there. She knows when dinnertime is, too. If I go one minute past 6:30, she's flipping out.

That's not to say that we don't have our issues (see: toothbrushing nightmare), but in this area, we're cool.

So the way the last part usually goes is that Playette gets in her bed and allows me to cover her with a blanket. Sometimes I sing (poorly, but she doesn't care). Sometimes I read. Sometimes, I just exit quietly.

What she has started doing is waiting a moment, getting back out of bed, walking to her door, opening it, looking out, closing the door, turning on her light, and getting back in the bed.

After a few minutes, she falls asleep.

I love seeing her solve her own problems. She can't quite tell me that it's the dark that she doesn't like, but she's figured out that she can reach the light switch and create an environment that better suits her.

I was talking to a friend today about why the r-words offend and hurt me so much. She told me that she hadn't made the connection that Down syndrome automatically meant mental retardation. She didn't realize that it was a given and saw it more a learning disability (interestingly enough, she attended school where people with disabilities were included). She doesn't see Playette as mentally retarded. She sees her as smart. She said, "She teaches me!"

She gets it.

Thursday, October 21, 2010

Watch your back, Martha.

If you read the comments, you might have noticed that BD made a rare appearance there the other day.

He was calling me out, of course.

All in good fun, but that man knows me so well.

I was talking about hanging pictures in the very house that we're moving out of shortly and he was all, "What no pictures of the pictures?" and, well, of course I had taken one but just didn't post it so I had to laugh.

Here it is, in case you're interested.


Not hugely exciting as a stand-alone, I know, but there are two reasons why I'm sharing it:

1. Dude. I hung up pictures. All by myself. That's borderline crafty. Look at me! WHEE!

2. The photographer was my friend, Stephanie, and I love these pictures so very much and they deserved a place of honor in our home. She was kind enough to take them when we were in Orlando at the NDSC Convention over the summer.

If you're in FL, or know someone who is, and looking for a photographer, contact her. She's awesome.

Here's a snippet of our session:







Lovey, love, love.

Those pictures make me smile.

I'm glad they're on the wall now, where I can see them all the time.

=====

This is probably a good segue into talking about the conference, huh?

I'm running out of days. I better get to posting!

Wednesday, October 20, 2010

PSA

This here is my annual post to remind you about mammograms.

Get one, k?

Not only is October Down Syndrome Awareness Month, as you've surely realized by now, but it is also National Breast Cancer Awareness Month.

Both topics are significant to me.

I have a pretty extensive family history of breast cancer and I've been getting mammograms off and on since college, after my mother died in January of my freshman year at the age of 42.

It wasn't until this year, though, that I've done them two years in a row. As a matter of fact, it hadn't even registered that it was time until I got a letter in the mail reminding me last week.

So, since I had my, ahem, Well Woman Exam today, I asked the doctor for a referral. He gave it to me right then and there and since I still had time before I had to pick up Playette from daycare, I walked up and across the street to the Breast Center.

I had only intended to make an appointment, but they had time available and gave me the option to go back right away. I accepted and was in and out pretty quickly.

It's pretty amazing, really. Very short and painless.

And it can do a lot of good.

So if you've been wavering and it's that time, just go, please.

As an aside, I just happened to catch something on CNN the other day where they were talking about mammograms and the expert was saying that digital is better and to request an MRI or ultrasound if at all possible. Just FYI.

My center is participating in a clinical trial that provides MRIs free of charge to those who qualify and I've got my fingers crossed that I get a call tomorrow saying that I can come back for one.

Just wanna cover all the bases.

Gotta stick around and help raise this girl, y'know?

Short Timers

I've been pretty busy lately, running through to-do lists like it's going out of style.

I've been trying to eat up the food in the fridge and the pantry, go through papers and clean out clutter, dot all the Is and cross the Ts.

We'll be moving soon and there are so many things that I want to accomplish here before we do, but then I also have to think ahead to where we're going.

It feels like just when I'm starting to get things figured out, it's time to go.

But that's life in the military, right?

I started calling prospective preschools a while ago and then stopped. For a few reasons.

1. People don't get back to me with promised info.
2. My phone calls don't get returned.
3. I have to continue to live life here.
4. It all gets to be very draining.

and, most heavy on my mind...

4. I was blown away by the acceptable discrimination.

Correct me if I'm wrong, but I don't think that people who have don't have children with disabilities realize how disgusting it feels to have to call and ask schools, over and over and over again, if they will accept your child.

Because they're allowed to say no.

I mean, you could try and just show up and enroll your Little, but dealing with the shock (and maybe even horror) of the other person while they're standing in your face isn't exactly ideal either.

This part? Not so fun.

I figured that once I found the perfect school or program, I could then narrow down where we should live and start looking for places accordingly.

Months later, I am no closer to that goal than when I started.

So, in an act of ultimate denial, today, I hung pictures on the wall.

As if we're not going anywhere for a long, long time.

They look great up there though.

So I'm happy.

Baby steps.

I’ll come back to the hard stuff soon enough.

Monday, October 18, 2010

Steppin' Up!

On Saturday, Playette and I drove to the Sacramento area to spend some more time with our favorite Phamily.

We arrived just in time to see Operation Spirit in full effect. I was quickly taught how to make a tutu. I was quite proud of myself as I am usually what is considered the opposite of crafty.

I did not, in fact, have to be taught how to eat all of the wonderful spread of food that was on display.

That? I am good at.

There was glitter everywhere. Signs and large, decorated "Gs" (for Team Gabalicious). Streamers and curly strands for the wagon. Matching t-shirts and accessories for all.

Well actually, there weren't quite matching t-shirts for all.

Sheree went out of her way to have slightly different shirts made for our team-within-a-team, "Playette's Peeps."



The walk itself was a lot of fun. The girls were gorgeous and as we walked, we cheered and sang and danced.


Last year, Team Gabalicious had won the "Most Spirited" award. What a fun thing to aim for, right? I'm all for getting festive and showing people that we, the friends and families of people with Down syndrome, know how to celebrate in the name of increasing awareness.


It was also nice to see so many other families again that I have gotten to know over the last couple of years. We all have this amazing bond based on the little something extra that our kids have in common.

Ds Walk #2 of 2010 complete.

Ds Walk #1 of 2010


Sunday, October 17, 2010

Gotta Love Sesame Street

I will begin teaching this song to Playette immediately.

Very important and a nice reminder to me of all the things our hair can do.



It's not always easy being different. My little girl will experience that in more ways than one.

I just want her to know that different is ok. Actually, different can be more than ok.

It's beautiful and should be celebrated.

Saturday, October 16, 2010

Oh, how times have changed.

I can't help but think back to three years ago, when I was invited to my first Buddy Walk.

"What the heck is a Buddy Walk?"

"Oh."

"Why would I want to go to that?" I asked, four-month-old baby resting quietly in my arms.

"Lots of people with Down syndrome? Um. No. I don't think we can make it."

In my head, I was thinking of how uncomfortable I'd surely be. I could picture myself leaving in tears. I would probably stare and might say something inappropriate. I wouldn't be able to be social and enjoy myself. Why would they do something like this anyway? It couldn't possibly be fun for anyone. How sad. All these people, gathering in a park or something, pretending to have a good time.

=====

This month alone we'll have gone to three walks in the effort to raise Down syndrome awareness.

It is fun. For the entire family and our friends.

I love it.

And I mean it.






Click on the links above if you're interested in learning more and/or attending a Buddy Walk. Not all areas have a BW, but there are similar events by other names that you can find by searching out your local Ds group. For example, in WI, we attended DSAW - Fox Cities' "Down Syndrome Awareness Walk" and Sacramento's Down Syndrome Information Alliance calls their walk "Step Up for Down Syndrome."

Friday, October 15, 2010

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.

video

Thursday, October 14, 2010

Pop Some Corn or Set Your DVR

Don't forget to watch Monica and David tonight on HBO

Let me know what you think, please. Publicly or privately, no matter.

You can be honest. When I saw it the first time over the summer, I had mixed emotions so I'm looking forward to seeing if I have a different reaction this time.

Overall, I think it's a good topic to be explored and I think they did a great job with the film. It's good to get people talking and for more folks to see that adults with Ds have emotions that run the gamut, just like everyone else.

More to come on this later...

Grandma Technology

I wanted to post last night.

I tried to post last night.

But I was useless without my internet connection.

I also learned that my Blackberry is no good when it comes to posting. Bah!

But I'm back in business. For now.

And I also now officially know the difference between the router and the modem.

I bet you're jealous.

You're really gonna hate me when I tell you that I "direct connected" the laptop to the modem with my "ethernet cord."

Yup.

*popping collar*

So, wanna know what I deduced this morning as Playette and I were playing Dance Party USA (snort)?

Well, I know her favorite singers.

They are:

1. Rachel Coleman
2. Rihanna
3. Me

She cracks me up. She was absolutely enthralled while watching Rihanna's new video for the first time today. And then she started singing along while dancing. I think she may have even signed "world" a few times but, um, I don't know that sign so I totally need to look it up. Heh.

I love moments like that and thinking back on it makes me smile.

Oh, and that reminds me. She seems confused by how Rachel used to be in the TV, which she was perfectly fine with before, then she was right there in person, and now she's back in the TV again.

I've caught Playette tapping the screen and looking behind the television in confusion.

Poor babe.

Wednesday, October 13, 2010

The Adventures of New Dora, etc.

Since last night, when these videos were made, we've had continued success with New Dora. So far, there have been two nighttime brushes and one morning.

I'm shocked. Happily shocked, I tell you.

1. That things are going so well. Is this a trick? When will she turn on me?

2. That I've said it "out loud" because now I've probably jinxed it and she'll turn on me in the morning.

3. That I'm even writing about this at all. Three posts in a row about the brushing of teeny teeth? Eh, I guess this is my life now and I just need to accept it.





There is one line in there that makes me snort every time I've watched it.

Because I am 12.

Oh! Since I'm on a question-asking roll here, has anyone else experienced the noise Playette is making in the second video, starting at about one minute in?

IT'S DRIVING ME NUTSO!

She started doing it a few weeks ago. I have no idea what it is or why. Is it a phase? Does it just feel good? Does it need to be addressed by a professional? If so, Pediatrician or (if we had one, which we currently do not, grr) ST?

I know that she's quite fond of the sound that the letter X makes. I wonder if she's just duplicating that feeling?

Anyway. If you've heard that or have tips, please let me know.

In the meantime, I'll be over here pulling my hair out.

Monday, October 11, 2010

Golden Feedback

Yes!

You peeps are smart. Thank you!

Today, after we got "our" run in (pushing a stroller? hard work.), Playette and I went to the beach with a friend for a bit and then hit up Targé Boutique.

My one and only goal for this trip was to find a kid-sized electric toothbrush. I had no idea how many options there would be and, thus, I was overwhelmed.

The Diz princess looked awful. Like, twelve rounds of awful. I think she was supposed to be Cinderella. I considered the crayon for a second, but then there was also the one that came with stickers so that you could design it yourself. As I was debating the necessity of that project and whether or not it would turn into something that would make twitch...Oh! There's some more that came with extra stuff. Like toothpaste. Then there was a Thomas one that I liked, but Playette has no idea who that is. Still, I like trains. I hate that there's so much girl/boy stuff. Why not just kid stuff?

And then I saw her. We've never watched an episode, but somehow Playette knows who she is. Could it be just because she's on some of her pull-ups? Could be. No matter. The fact that she would recognize this character suddenly seemed of great importance to my cause.

So I grabbed her.

And then I checked to see if she came with batteries.

'Cause if she didn't, she was going back on the shelf.

She was properly equipped.

Whew.

I dubbed her "New Dora."

I tried to make this an adventure, y'all.



I even let Playette ride in the cart-cart and not the actual seat because everything that has to do with brushing your teeth is dangerous fun!

I took a little bit of video of our experience tonight with New Dora, but if you've been reading here a while, you know that I suck at video uploads. This time is no different. I'll keep working on it and hopefully have something to share tomorrow.

Sunday, October 10, 2010

Now that she has teeth, they will all fall out.

Because she refuses to brush them.

Whaaa?

Every time I break out the toothbrush, Playette flips out. She'll sign "brush teeth" and act it out it all day, but the actual act? Akin to torture in her eyes.

You should see how I have to do it.

Not fun.

And then I feel like traumatizing her with the experience really isn't helping my long-term goal.

I sing songs, I dance, I entertain, I model the behavior I want to see.

And nothing.

Any tips, oh wise ones?

This morning, though, she did go into the drawer in our bathroom and take out the toothbrush that I use when I travel (oh, and yay for mad fine motor skillz, but dang are things harder when she can open bottles and other typically-hard-to-open thingees). So, yeah, at first I assumed that she wouldn't get it open because sometimes I have trouble with it, but nope. A couple of minutes later, there she was:


Soooo, do I just get her a grown-up brush? Is that the issue, maybe?

BD says she looks like an inmate when I take pics of her up against the plain wall like this. Ha!

I made it.

That's what I keep thinking.

Here it is, right close to midnight, and I made it.

I'm not talking about posting, I'm talking about making it though a crapfest of a day.

You've had those, right?

When everything is happening and none of it in the way that you envisioned?

When you want to be patient and loving and enjoy the beautiful day while running errands with your Little(s), but then you notice that your jaw hurts because your teeth have been clenched too tight for too long?

"BeBe and CeCe" made a long, unwelcome appearance in my house today. That's what I call Playette when she's doing a lot of whinin'. Usually, she's either BeBe or CeCe, but not today.

One of us did a lot of yelling and crying at one point, but it may not have been the one you're thinking.

Looking back, I can laugh. It's funny now, twelve hours later, how back then I was begging for noon to come because I was sooo sure that a bad morning was going to turn into a great afternoon.

I ate a lot of Wheat Thins today. Like, half a box. While sitting on our balcony and gazing at the peek-a-boo view of the ocean. Yeah, Wheat Thins. They made me feel better while Playette took an 8 minute nap. At least they're not graham crackers and Nutella.

Baby steps.

Another thing I can laugh about is how hard I worked to prepare a meal for a new mom (I volunteered and tonight was my night) only to go to my email to verify her address and notice that the very things she didn't want were in my dish. Like, prominently.

Oh, geez.

I screwed that up big time.

I hope she'll let me make that up to her.

I had a big event to attend tonight. Unfortunately, our sitter was quite ill and we had to make other arrangements. Thankfully, I've learned how to ask for help when I need it and it all worked out in the end.

What's that, Maya? If it's not ok, it's not the end?

I think about that quote a lot these days.

So, I made it to my event. A fundraiser. Wanna see what my couple of glasses of wine on top of an empty Wheat Thin-filled stomach bought me in the silent auction?


There are cookies in there. Lots of cookies. And chocolate and a blanket, maybe a mug, picture frame bookends, and a couple of autographed children's books.

Comforting, huh?

I like winning stuff.

Once I got that and my mushroom risotto followed by 2+ desserts, I was in a much better mood.


Yes, I ate all of that. The apple crisp? That went really fast. I barely remember it. I drew the line at dessert #3. No, wait. I did eat the strawberries off of that plate. But fruit is good for you, so YAY!

Just when I thought it couldn't get any better, I made a new friend.


It's all ok now.

The end.

Saturday, October 9, 2010

The Travel Deets

Ok, so maybe this will be the most boring post ever, but, eh. I just feel like sharing.

So, I was very proud of myself for being all packed and ready to go last Wednesday night. I even put the suitcases in the car so that there would be no delays in getting us to the airport by 5am. I didn't get much sleep, but I figured that I'd catch up during the two plane rides.

On Thursday, I was up at 4, got myself cleaned up and dressed and then did the same with Playette. We were a few minutes late leaving, but such is life with a three-year-old and a very sleepy mama.

Our airport is close by and teeny tiny so I didn't anticipate any problems.

That was my first mistake.

As I dragged our luggage through the doors, I realized something.

The line was long. Really, really long.

And it wasn't moving.

The plane wasn't there. It never landed the night before, due to fog, apparently.

And that fog? It was still lingering.

After about an hour, we made it to to the counter. The hope was that we could still make the connection, but it was already looking bad. Just in case, the agent saved us seats on another, later, flight that would take us though two different cities, adding another leg of travel and several hours.

I really wanted that original plane to show up.

I had packed a lot of snacks, but still.

Fast forward 5.5 hours, two itinerary changes, another hour in line, a Signing Time DVD on the laptop, two calls to United customer service, two trips through security, and zero planes landing and I was D-O-N-E. So were the snacks.

Playette was doing remarkably well. Since I hadn't packed enough pull-ups in the carry-on to get us through such a long day, I was making sure to take her to the bathroom regularly and she was doing great.

There weren't many breakfast choices, so we shared a croissant, which did not please my companion. I tend to forget sometimes that so many things are firsts for her. I don't think she had ever had croissant before and to have it all smashed and butter-drenched was not exactly appealing to her. Too bad my brain doesn't work the same way.

So, yeah, I was done there. I ended up calling to get on the same 6am flight the following day that we had originally been booked on and when I confirmed the details, I was informed that, yes, I was on the flights, but Playette was not. There was no room for her.

Okayyy.

That wasn't gonna work.

So, my next option was to come back that night and take 3 planes to Wisconsin. It had to be done. There was no way were weren't taking this trip. But even though Playette was in good spirits, she looked awful. She was getting sick and I welcomed the break from the airport.

After retrieving our luggage, a friend came to get us and brought us home. On the way, I called the pediatrician and made an appointment to get the Littlest checked out. The last thing I wanted to do was take a sick kid to someone else's house and get all their kids sick. I at least had to know what I was working with.

After the doctor's office, we got scripts, lunch, and came home for much-needed naps.

At 7pm, the fun started all over again.

This time, though, the plane took off. Late, but still. We left.

When we landed in LA shortly before the flight to Chicago was to depart, I noticed that the carseat dolly thingee was broken. I had made the mistake of gate checking it and they were not gentle.

That, frankly, sucked.

So not only was I loaded down with carry-ons, but now I had the dolly, Playette, and the carseat to get wayyy across the airport to a flight that was already boarding.

I didn't have enough hands.

And no one at the gate was offering any form of assistance.

Until this one pilot became my hero.

He took Playette and I grabbed everything else and we ran. I mean RAN. I was soooo grateful for my tennis shoes and all the miles I've been putting on them lately because we were on a mission. Missing another plane just did not feel like a viable option.

When we got to the gate, I was a sweaty mess and they were waiting on us. Like, "Really? Where have you been?"-type waiting on us.

I grabbed our outstretched boarding passes (thankfully, they thought to change our seats so that Playette and I would now sit together), thanked the pilot profusely, and walked onboard.

There were about 7000 people on that plane. And they were all giving us that same "we're waiting for you" look.

I try not to get embarrassed about things like that that are out of my control, but I could feel my face getting hot. I was already sweaty and loaded down with stuff and we had a long way to the back of the plane. I didn't have the hands to keep Playette close, but, thankfully, she makes friends quickly and was saying "hi!" and waving to everyone she passed.

So, as I fumbled in first class, I looked up and saw a familiar face. When I see famous people, I always first think that it's someone I know personally. It took a second to register that, no, this was not my 11th grade History teacher, this was Smokey Robinson. "Tears of a Clown" and "Quiet Storm" and a million other songs Smokey.

Suddenly, I perked up. I looked at him and quietly said, "I'm a big fan," and then shuffled down the aisle, after Playette, feeling good and humming songs.

We had a pretty long layover in Chicago, close to three hours, so Playette and I hung out in the frequent flier lounge (free snacks!). Guess who else was there? Mr. "Cruisin'" himself.

He made eye contact and I said, "Hello again." He got up from his seat and greeted Playette, who did not happen to be at her friendliest. We talked for a couple of minutes (He said that Wisconsin is beautiful - true!) and then we said goodbye so that he could get back to resting. Playette offered an "I yuh oo" as we walked away.

I was too tickled. I really like him.

After breakfast, we made our way to the other side of the airport (thank goodness for luggage carts!) and boarded the last, short flight to our destination.

It was a long beginning to a great weekend. All worth it in the end.

Friday, October 8, 2010

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.

Thursday, October 7, 2010

Open Book

That's me.

Go "Anonymous" if you like.

This is my one open invitation for you to do so.

And don't worry about me tracking you down.

Anyone who knows me can tell you that I'm too lazy to do that stuff.

Even though I promised pictures from our trek to the land of battered fried cheese balls (mmmm), that will have to wait another day.

Why?

Because I unexpectedly had a few Ds-inspired moments today. They caught me totally off-guard.

While away, my TiVo overflowed. That should tell me that I watch too much crap, but instead of beating myself up about it, I grabbed some goldfish crackers (OMG, when did they get so good?!) and plopped on the couch to watch the latest episode of "Glee."

Now, if you don't watch the show, I must tell you that one of the characters in the ensemble cast is both coach to, and a younger sister of, a person with Ds. Her name is Sue.

So, in this episode, Sue is talking about her personal spiritual beliefs and how those came to be.

She said that she used to pray as a child because she noticed that her older sister, whom she idolized, was not respected by other people. They made fun of her. They called her names. And that made Sue very sad. She wanted it to stop. So she prayed for her sister to be cured.

<<< OMG, TEARS! >>>

So, yeah, I welled up a little.

And then, after that was over, I clicked over to "Extreme Makeover: Home Edition." Now, I don't usually watch that show, but I recorded it this time because a friend informed me that they were featuring a family that included six people with Ds. Michelle and I caught part of the episode, but I didn't see the beginning and I wanted to know the backstory. (Big ups to Blackberries with TiVo apps.)

I just feel like I have to say some things here.

I don't care what you hear on TV.

1. People with Ds are not banished to a life indoors. They can leave the house and live fulfilling lives.

2. Adults with Ds are not "kids."

and

3. It is insulting to call people with Ds anything other than people who happen to have Ds. Saying things like, "They're Down syndrome."? Really? How does that even sound right?

There was more, but those are the things that really stuck with me.

It was a nice house when they were done, so yay. But damn. No one thought to correct the voiceovers?

I also heard, on Rosie O's radio show this morning, a woman who called in regarding Glee say, "blah blah blah and then the part with Sue and her Down syndrome sister blah blah blah."

Grates every time.

Why must people say it like that? Why do so many people use it as an adjective instead of as a noun?

Honestly, I can understand if someone were to describe me as "the Black lady", but would you call me "Sore Throat Crittle"? Or, because Ds is not an illness and I don't want to even to allude to it as such, "Size 7.5 Shoe Crittle"? Would you say that I am my size 7.5 shoes?

I don't know if I'm being perfectly clear here, but the point I'm trying to make is that I have a sore throat and I wear a size 7.5 shoe. Those are not who I am.

Playette has Ds. It's not who she is. She is so much more than her diagnosis.

Ahem.

Ok, so at least as I watched "Teen Mom" tonight (don't judge me, my kid was already asleep), I noticed that they bleeped the R-word.

That made me feel a little better.

So.

What I originally came here to say was:

ASK ME WHATEVER YOU WANT ABOUT DOWN SYNDROME.

PLEASE.


There's a lot of bad info out there.

I want to help.

Do it for the "kids."

I'm kidding.

Only about the "kids" part.

Totally serious about you asking me whatever you want to know about all things Ds-related.

Personal or otherwise.

Go anon or email me directly if you must.

Wednesday, October 6, 2010

It's EXACTLY like That '70s Show!


Ok, well maybe not exactly like it.

But it was Wisconsin.

And we were there.

Yup, Playette and I made the fantastic decision to head east for a long weekend of visiting with friends and adding a little bit of advocacy on the side.

Who do we know in Wisconsin? Well, these great folks.

I've written about them here before. They have a daughter named Ruby who is just over a month older than Playette. I came across the family's blog when I was still coping with Playette's dx and I immediately identified with this mom of a little girl who reminded me so much of my own. I'd been hoping that these girls could meet for quite some time. And then it happened.

After initially checking each other out like rival greasy dancers on the set of the "Beat It" video, Playette and Ruby came around and decided to be besties for the duration. Success!

Since we're become friends, the Z fam has grown and, while I was so excited to meet everyone, I was especially looking forward to a hug from Lilya, their newest addition, home for nearly three months now after her adoption from an orphanage in Ukraine. Lily has left an impression on us for sure. I've been home for 24 hours now and I find myself answering questions with her trademark "Dahhh" ("yes" in Russian) and Playette spent the evening asking "uuuup?" just as Lily likes to play.

There's something about being a part of something larger, y'know?

I don't have a big family and whenever I'm around one, I just feel like I want to make myself at home. There's always something going on.

Other than laundry and dishes, I mean.

We played indoors and outdoors. We saw Rachel Coleman speak about her experiences raising her children. We ate friend cheese curds (and ice cream, fruit fluff, pizza, fudge, chocolate chip pancakes, etc. All organic. Ha!). We walked in the first annual Ds Awareness Walk for that area. We saw our kids perform on stage with Rachel during her Signing Time concert. We went wine tasting - in the living room. We laughed. We cried. We shared.

It was a time that I'll never forget and I am so, so grateful for my friends.

We've really met some wonderful people on this Ds journey we're on.

Will we go back?

Dahhh.

Pictures tomorrow...

Monday, October 4, 2010

Awareness Hair


Check out Playette's 'do from Saturday.

I hadn't planned it like that, but, hey, we're all about being festive over here. She was also giving me a lot of grief about doing her hair that day so I knew I'd be keeping it simple.

So yellow and blue adorned puffs it was.

In case you didn't know, the Ds awareness colors are those very same ones.



Sunday, October 3, 2010

Interweb Gem

While recently battling insomnia, I was introduced via YouTube to MattyB, a seven-year-old rapper. After watching a few videos, I think he's a cutie and he makes me smile, thus melting my icy cold heart.

Even better than his rap over "California Gurls" is this tribute to his little sister:



Driving Miss Crittle


Playette and I hung out at one of the coolest parks ever today.

She really enjoyed "driving" me around and doing the "beep beep" on the horn.

Some other stuff happened at the park, too, but, hey, it's 31 for 21, so I need to space out the goodies a bit. ;-)

Saturday, October 2, 2010

How do you know?

I had a great night tonight, but I'm going to let it marinate for a little while and write about it in a bit. So much to say!

In the meantime...

If you're the parent of a child with Ds, you may have asked yourself at some point, especially if you're a first-timer like me, "Is this a developmental stage or is this the Ds?"

I mean, of course I do that with things like speech and behavioral issues, but this other one...this other one I can't help but wonder if it's attached to the extra 21 or not.

Door closing.

Playette cannot function with an open door. If she wakes up from a nap and her bedroom door is cracked, she doesn't come out and greet the world refreshed. Nope. First, she has to close the door. Then, she'll come back and open it.

I've heard other parents of kids with Ds say the same thing.

But do 46ers also sometimes do it with the same conviction?

Is it a common 3 year-old thing and I just don't know because I've never had another 3 year-old?

So, regardless of what experience you've had, what say you?

I'm really curious about this one.

Are obsessive behaviors common in people with Ds, regardless of the age?

Hm. Now that I think about it, I do recall seeing that Monica, from the documentary Monica and David, had to have things just so. Is it a matter of routine and being in control?