Siblings

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

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

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

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

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

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

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

But, I digress.

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

In a nutshell, I liked it.

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

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

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

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

I’ll never know.

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

And I appreciated that.

It’s That Time Again

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

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

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

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

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

We hope to see you there!

And thennnn....

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

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

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

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

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

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

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

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

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

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

Thankfully, I have you all.

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

Goings On

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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And then there's this story.

Um. Well.

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

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

I'm not a fan of special-special.

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

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

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

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

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

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

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

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

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

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

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

We'd love to see you.

Out of Character

So, last week, when I was feeling all motivated about the NDSC Conference, I checked Kayak and saw a pretty good price for tickets. Well, as good as they come these days. Flying is 'spensive!

"Ah, cool. I'll go back and get those later."

[cue the laughter of the universe]

Of course, when I went back, the tickets had gone up over $100. Each.

And since BD needs to come home a little earlier for work, his ticket was already more than ours to begin with.

iPouted.

To put it mildly.

Seriously. I was pissed like someone had stolen the money out of my bank account. In my mind, I knew that I never had the tickets to begin with, but still. I mourned the loss of that money and all that I could have done with it. Like buy really big cupcakes.

Thus began the obsessive checking and re-checking of Kayak.

I put a daily reminder on my phone, but there was really no need. All on my own, I checked as soon as I woke up, before I went to bed, and sometimes in between.

My chest got all stabby as the prices kept going up and up and up.

I began feeling bad about registering for the conference because, if I hadn't, we could just bow out gracefully, right?

*sigh*

And then this morning it happened. The clouds parted and a fare that was $5 less than the first elusive one popped up. BD's ticket had gone back down as well. Oh Happy Day!

They're still 'spensive, but what're you gonna do?

I bought them.

And it took forever, what with all the verifying and extra security measures that you have to go through. They also threw in the need for yet another password to use my debit card and I had no freaking clue what that was so I had to recreate it and then, of course, I remembered the last one when I tried to make that my password and they were all "you already used that one." Ugh.

But, anyway, we're going. For sure now. On an aeroplane. Or six.

That's what I get for trying to do stuff all early.

And I know that I need to take the Kayak app off of my phone immediately because if the prices go down again? I.WILL.LOSE.IT.

As a reminder, for anyone heading that way, there are discounts available on AirTran (20%) and American (5%). Not that I got to use either one. *grumble grumble*

Also...today is Day 10 of Insanity, in case you were wondering. This whole ticket thing kept me from working out....What? Do it now? But, but...Fine then.

I'm pouting again.

I still want a cupcake.

Bullets

• I finally registered for the NDSC conference. Funny that I said "finally" when it's wayyyy before the deadline for when the price goes up. It's usually more my style to wait until then.


• I guess that's why we still don't have plane tickets. Procrastination FTW!


• Someone I was friends with a long time ago died in a way that makes me very sad to think about. A lot of fun memories have come back to my mind since finding out that his life was cut short. I remember that my mother really liked him and that makes me smile. I also remember how pissed my mother was when the group of us "borrowed" her car and drove to the place that I now live and stayed overnight. If my child is like me when she's 18, I totally deserve it.


• Laughing makes me feel better.


• I have way too many papers in my house. They are in piles. Everywhere. And include lots of unopened mail.


• I will be 35 in 45 days. That makes me think of a lot of things.


• Like, "What can I accomplish before then?"


• And Advanced Maternal Age. *gag*


• By the way, I started Insanity yesterday.


• The Fit Test made my calves ache.


• I'm scared to do today's workout.


• Playette started Applied Behavior Analysis (ABA) Therapy last Thursday. Today is day 2. They're still in the "getting to know each other" phase. What I like so far: it's at our house. What I don't like so far: 3 hours a day, twice a week is a lot for this mama! If you have any experience with ABA, please feel free to share.


• Playette continued going to her new school, the less-shiny place that we have to pay for, while I was on reserve duty. They took pictures. They are hilarious. I can't bring myself to toss the proofs even though I have no intention of purchasing them. Ever. Never.


• She's still enrolled in public school. She will obviously not be receiving an award for Perfect Attendance since, well, she hasn't been there in a month and we're still plan-less for moving forward. PoTY!


• But if she does go back? She's allowed to be picked up in front of our house again. I wonder what my landlord said to the board, exactly, to get them to switch up.


• This neighborhood isn't all bad. They had Margarita Friday at the clubhouse last week and we got the opportunity to meet some nice neighbors. Apparently, we have more than our share of Navy SEALs in this little enclave. I think that's pretty cool.


• Job hunting isn't fun, but I continue to do it. Just like laundry.


• I have the most amazing video of my kid doing something but I can't post it because of pervs on the web. You'll just have to trust me on this one. Or come to San Antonio in August and ask me to show you on my phone.


• Are we really going to San Antonio in August?!


• I've been cooking a lot more. BD bought me a food processor and it's awesome and so much easier that actual cutting. Yay!


• Every time I add another bullet, I'm really just trying to avoid working out.


• Ok, fine...

Community

I was talking to a friend last night and the conversation turned to conventions. Specifically, what was it about the NDSC conventions that kept me wanting to go back?

I thought I knew, but it took me a while to not only articulate it, but also be perfectly fine with what I articulated. I finally got to a point where I could exhale and go, "Yeah. Ok. That's my final answer."

The truth of the matter is that while I appreciate learning about all things Ds, I can only handle so much. Our first experience, in Sacramento in 2009, was highly academic. It was planned. It was all, "Alright, BD, I'm going to learn about speech from 0-2 and you can take Playette with you to listen to the talk about PT since I'm sure they'll be some key points addressed there that we'll need. Oh! Don't forget the new mom's talk. I need to be at that one. Are you going to the talk for new dads or the one for African-American parents? One of us needs to go, don't you think? I guess at some point we'll need to eat before the plenary session. But then when are we going to have time to walk around the booths?!"

Seriously. It was a lot like that.

Then, last summer, in Orlando, I caught myself slacking off...and being totally ok with it. I was drawn to watching documentaries and listening more to people's experiences than what the experts had to say. I think BD went to a whopping 2 sessions and one of those was to hear a friend speak.

There's something to be said for being surrounded by peeps.

And that's what keeps me going back.

That is why we'll be in San Antonio during the low tourist season otherwise known as OMG it's August in Texas.

It's because other people will get us without even trying.

Yes, it's a lot of money. Yes, it's effort to travel. Everyone can't do that every year. And, honestly, it probably is far from necessary. But...I can't resist the urge for normalcy. Fitting in feels good.

This world can be lonely. Especially when you're moving around every couple of years. It's nice to have something to look forward to.

Speaking of, I'm going to a Mom's Night Out tonight with the local Ds group. They better be nice to me, dammit. It's in the rules.

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.

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

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

Getting Settled

I know it may seem like we're always jumping up and going somewhere, and I guess if I only read my own blog, I'd think the same, but honestly? We sit around doing nothing a lot. More than I like most of the time.

But I'm actually looking forward to doing that for a little while because the past month has been craaaazy.

First, the party, then a wedding, then Costa Rica, then my friends up and surprised me, followed by a change in my work schedule, and then we were off to the NDSC Convention.

Yup, we went.

And had such a good time!

For those of you that have been on the fence about it, let me encourage you to attend. Sure, it's an awesome opportunity to learn more about the Ds community and the latest in outreach, research, and opportunities, but what I love even more is the fellowship. It's almost like there are no strangers, just people that have either been there or are headed your way so it's easy to start conversations. What can I say? I just love hanging with my peeps. I like being in a place where when I say my child is 3 years old, I don't get quizzical looks or rude comments.

Plus, there are special activities for siblings and young adults, as well as info that pertains to just about any group of friends, family members, or caregivers.

Next year, the conference is San Antonio bound from 5-7 August 2011. We hope to see you there.

I'll do a recap soon, but I just wanted to come and dip my toe back into the blog pool and remind myself that it's still a comfy place to be.

Getting Better

Sunday morning, San Francisco Airport.

I saw a woman walking with her son.

Something about him looked familiar.

Does he? No. Yes. Maybe?

No, definitely yes.

Do I say something? I want to. But what?

We still don't have a secret handshake or a gang sign yet, do we? Dammit.

Someone really needs to put that on the agenda at the next convention.

Until then, I just can't walk away.

There's this pull. It's like a magnet.

I head towards my terminal, but something turns me around. They're still there. Walking slowly. Taunting me and my inability to leave well enough alone?

I step towards them, recognizing the familiar feeling of angst over whether this will make me look foolish.

I circle them like prey.

Does he? No. Yes. Maybe?

No, definitely yes.

The mother looks nice enough.

God, I hope I'm not wrong.

If I think about it any more, I'll punk out.

So I open my mouth.

"Good morning," I say with a smile.

The mother gives me the "You better not be trying to sell me something" look.

I have to keep going. Finish what I've started.

"I'm sorry to bother you, but I always feel compelled to speak to others who are on a parenting journey similar to mine."

Hm. That came out smoother than I expected. Wordy, but definitely better than what I've said in the past.

She smiles.

She knows what I'm talking about.

She asks me about my child. I tell her.

She smiles some more.

She tells me that they're only walking so slow because her son hurt his foot.

He lives on his own, you know.

And he assists with their local college football team.

I notice his jeans that are frayed at the bottom, his t-shirt, and flip flops.

He looks like any other guy his age.

I smile some more.

I could talk to them for so much longer, but soon I wish them safe travels, not wanting to overstay my welcome.

Buddy Walk '09

The Buddy Walk was established in 1995 by the National Down Syndrome Society to celebrate Down Syndrome Awareness Month in October and to promote acceptance and inclusion of people with Down syndrome. Today, the Buddy Walk program is supported nationally by the NDSS and organized at the local level by parent support groups, schools, and other organizations and individuals.

We went to our second Bay Area Buddy Walk on October 10th. It was a gorgeous day and this year...we had a team! Malea's Crew. Last year, it was just The Mama and The Littlest so we more than doubled our participation. WOOT!


We also had several friends and family members who were with us virtually, sending good wishes and donating when possible. Check out our ticker at the top of the sidebar. I think we've done great so far!

All money raised in relation to our Buddy Walk supports activities provided by the Silicon Valley Down Syndrome Network, a group that has served as a great resource for our family.

The best part of this Buddy Walk, though? Playette walked!

Last year, as we were completing the one mile loop in the rain, with her in the stroller, I told her, "Next year, you're walking." That was really my hope for her more than it was a command. At that point, she was 16 months old and I could only imagine when she would start walking on her own.

Check out how far she went:


I'm very proud of her 1/2 mile...she's one step close to being theme park bound. [She has to work herself up to 5 miles (with no whining, ha!) before we can all go to Disney together. Don't worry though. If we're at next year's NDSC conference together and she hasn't reached her goal yet? We may let you borrow her so that she can see the Magic Kingdom. ;-)]


And here she is enjoying the band (and the camera) early in the day:





Many thanks to Dan for taking those great photos.

BD wanted me to make sure that I added this one in. There were informational signs all along the walk.


We had a great time. I don't think we'll still be in this area next year and I'll miss this great group of folks for sure.

Looking Back: Buddy Walk '08

Flourishing

Sorry that I haven't been actually writing much lately. For those of you that also blog, you're probably familiar with the term "in drafts." I have lots of posts in drafts. Started, but not completed.

So, if you're looking for more info on the Ds conference or how we met some more formerly-online-only friends or want to hear about when Playette flew her first kite or need to know what just what "Thaiwaiian" is exactly or want to hear the details of the party that just won't plan itself or want to know my thoughts on the ideas presented in the 600+-page megabook, Disability is Natural or are looking forward to seeing our first professional family photos or are curious what orange highlighters, of all things, have to do with success at all?

Stay tuned. It's all coming. Promise.

Today though? Today, I'd like to introduce you to the Flourish Network.

It's a web site. It's a community. It's an idea come to life.

"The mission of Flourish Network is to improve the lives of children with special needs by helping parents become connected, informed, and poised to advocate for an environment that is fully inclusive and supportive of their children."

I met the founder of Flourish, Kori Shaw, at the NDSC conference. While she's a mom, like me, her children just happen to lack an extra 21st chromosome. Yet, she was just about everywhere I was at the conference. She came to lunch with the bloggers, she set up a booth in the exhibit hall. I saw her interviewing families, taking pictures, learning. This is a woman on a mission, y'all.

As you have time, please click on over to the site. The more people that know about it, the stronger the community can become.

Kori sent me a very nice email this morning, letting me know that she had posted a profile based on our interaction at the conference on the Flourish Network site. I had forgotten, until then, that one of those families that she had been taking pictures of was mine!

Check us out.

NDSC Conferece 2009 Recap

So after the whirlwind that was traveling to and from Phoenix, we made it home. BD was waiting for us at baggage claim and it was great to have the family together again.

But no time for mushiness, we had a mission!

After getting in the house at about 11pm, there was unpacking and repacking and a 3:30 am wake-up call to consider.

We were out of the house not long after 4 am and pulled up to the Sacramento convention center just before 7.

WHEW.

I went inside and was pleasantly surprised to be checked in by Lisa, who was volunteering. When I got back to the car, we came up with the plan that BD would head over to the house of the family friends who were so gracious to allow us to stay with them for the weekend. He'd get her cleaned up and fed while I attended the morning part of the nearly-all-day pre-conference session with Libby Kumin.

Ready, break.

First stop: "From Infant Babbling to Adult Speech: Helping Children with Ds Develop Understandable Speech"

Talk about overwhelming. Whew! I'm not sure I was good for any kind of long session like this after spending the prior three days learning about thrilling topics like appropriations law, audits, and various other acronym-filled Power Point sessions.

The good thing about this session was that a lot of people got their questions answered about their specific situations. The bad thing about this session was that a lot of people got their questions answered about their specific situations. (Ok, ok, so I asked a question too.)

Catch my drift? It was a long morning and Ms. Kumin was very patient.

My favorite part, though, was when she showed video of the young people she works with. At one point, there was a group of young women sitting around a table, discussing their plans for a party. It was really cool to observe and they all spoke clearly and with intent. They talked about their feelings, likes, dislikes. Very cool.

At lunchtime, BD came back and we met up with a great couple who was also attending their first conference. The wife found me through this very blog and we've been emailing and chatting by phone for months now. It was great to finally meet them and introduce them to Playette!

After lunch, I went back to the same session for a while, but I did peek into the end of the session hosted by Sara Rosenfeld-Johnson, "Improving Feeding Skills and Speech Clarity Using Oral-Motor Therapy." I'd revisit this topic later.

Throughout the entire conference, there were exhibits set up in one large room so that you could check out all kinds of things. Want Sure Steps, Specs 4 Us, info on the new Gigi's Playhouse opening up in San Diego soon? All there. And much, much more.

At 3:30, I went to the Sharing Session called "Mothers Only, Birth-2 years" which was hosted by Kathryn Lynard Soper, editor of the much-loved-by-me book Gifts and author of The Year My Son and I Were Born. I found it very fulfilling to be able to tell her, in person, how what she'd helped put together and written had touched me.



The room was full, all seats taken, and we started out by creating a list of things we'd most like to talk about. There was no way we'd be able to press through everything in 1.5 hours, but it was nice to try. We were the epitome of "Ds crosses all lines" as there were as many unique stories in that room as there were women. Later on, I'd learn of a cruise called "Moms Need Moms" and if I could swing it, I totally would. We need that kind of time.

All too soon, it was time to head down to the Opening Session. I was looking forward to the "We're More Alike Than Different: Self-Advocates Speak to the Nation" portion and I wasn't disappointed. Tell me more about how you live independently, work, drive, have a college degree, are getting married, or - best of all - are single now and available! Gotta love Eleanor Bailey, a student in Portland State University's Transition Program, for making the most of her time at the mic.

To close out our long day, there was free food an Opening Reception. It was a great chance to eat free food catch up with our more local Ds support network. I wish we all lived closer to one another because we have some really cool families in our group.

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I can't believe I thought I'd get everything in one post.

Stay tuned for Part II. I hate when I have to do that. Bah.

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.

Coming Up for Air

Hey there.

It's me.

I didn't mean to disappear. Really, I didn't. So let me tell you how it came to be that I did (well, partially, since somewhere along the way I had the foresight to plan a couple of posts in advance).

First of all, BD left me.

Are you still breathing?

Ok, so it was only for a week and it was for a necessary school assignment out at sea, but still. It felt like he was never coming back. I was alone with Playette, which isn't necessarily commonly referred to as an award-winning role for me (no secret that she's a total Daddy's Girl and I sometimes flounder at this whole mama thing), and kept much more busy than I had anticipated.

He left for San Diego on a Wednesday and then Playette and I flew to an oven Phoenix on the following Monday. I had to attend a training conference for my job and luckily BD's grandparents were available to keep the Littlest One while I sat in seminar after seminar after seminar for three days.

It ended up being great for the Greats (grandparents, that is) because they got to spend quality time with Playette and they absolutely fell in love with her in a way that comes from actually being around her. She's intoxicating, let me tell you. Sometimes she may lead you to the desire to actually be intoxicated, but a lot of the time she's just really stinkin' cute. That's my completely unbiased opinion of course. I think the Greats didn't expect such a cool kid and I love that they were pleasantly surprised. And also that she didn't tear their house apart or terrorize the dog...much.

I just remembered that I left out a completely crazy, totally "these kinds of things always happen to me" kind of story, but I'll save that for another day. Promise. It deserves its own post, I think.

So, while we were gone, BD came home. He got to catch up on PTI and enjoy all the chili dogs he wanted with no comments from me, which must have been amazing for him.

Playette and I got back on Thursday night. It was a total shock to the system to go from 110 degrees to 55 over the course of the flight, but we're soldiers. (Actually, we were more like whiny complainers, but "soldiers" sounds better.)

Never fear. We didn't stay home in the cold for long.

Because off to Sacramento we went!

This time we BD drove. After getting home at 11 pm, we quickly re-packed (more summer clothes, squee!) and went to bed. I wanted to catch up on TiVo, but BD was having none of that. I'm glad he stopped me because 3:30 am came very quickly.

We were out the door by 4 am Friday and just walked back into our house a little while ago.

The conference was a great experience, but I really wish I could have been in a better mood. Honestly, sitting in more seminars was not exactly on the top of my to-do list after the week I had in Phoenix, but we met some great people, got some really good info, and enjoyed ourselves.

Tired, we are.

I'll fill in the details as time permits this week. We've got to get back into the routine and I've got to work on losing the 5 lbs of fast food I gained while traveling.

If you have any questions about the convention, or anything really, let me know and I'll get to answering them.

If any new friends have made your way here....WELCOME!

SacTown

We're just wrapping up a pretty nice weekend over here, but before I can talk about that, I must take the time to acknowledge last weekend.

Last fall, Sheree and her family came to visit us. We had a great time chatting and going to the aquarium together. It was so nice that we promised to get together again.

And then life happened.

Next thing you know, it was May. I was bummed that we'd have to miss Gabby's birthday party since I was going to be away for reserve duty. When Sheree and I spoke, we made tentative plans to just pick a weekend in June and make it happen. And make it happen we did.

Early on Saturday morning, BD, Playette, and I piled into the car and began our trek.

When we got there, we were met by some of the most hospitable people ever. They immediately made us comfortable, told us to make ourselves at home, and meant it.

After playing with the kids for a while, we drove into Sacramento for our first activity of the day. I was very excited to meet Lisa and Monica, moms to Sheridan and John Michael, respectively. Monica also brought her lovely and helpful daughters, Anna and Greta.

The kids were so adorable, the day was beautiful, and the company was great. All moms of little ones with Ds (from 9-23 months), we shared ideas, answered questions, talked about the upcoming conference, and more. It was a great experience for me and I look forward to seeing them again soon.



After leaving the park where we had the playdate, the fun continued. Can you say "ice cream sundaes"? Mmmmm.



We weren't back at the house long before we were joined by Sonia and her family. None of us had ever met before, but Sonia and I have the Navy wife thing in common (plus, her husband is a Submariner, something BD can relate to).

So, now we've got a house full. 6 adults, 6 kids. The littlest ones were our three princesses, all at different stages, yet still a year old. It was so amazing and they were so sweet.

I got all mushy at one point when I looked at them. These girls are beautiful. Really. And I was overcome with the thought that people are afraid to have babies just like them. And then I thought of how wonderful it was to just be.

I mean, a lot of times when I'm out with people whose kids don't have T21, I wonder what they're thinking. Are they silently thankful that they're kid isn't like mine? Are they wondering why she isn't talking? Why is she so small? And if I haven't told them about her diagnosis, are they nervous about asking me?

You know, that kinda stuff.

Well, in this group, I didn't have to worry about that. Not one bit. I was relaxed. I was enjoying the moment. And it was great.

So I cried.

Sorry, y'all.

When I pulled myself together, I couldn't help but notice how grown up my little girl is becoming. She was enamored with the older kids and kept wanting to hang out with them.

Where's my baby?!

Oh, wait. There she is. Dunking.



I've been sitting here trying to figure out where all my pictures went and then *bam* it hit me. I was so busy coveting Sheree's camera, that I hardly picked up mine at all. Ha! Lucky, Sheree. Now she has a SD card full of artistic photos of things like Chick-fil-A nuggets.

For some different perspectives on that day, check here:

Lisa's post

Monica's post

Sonia's post

On Sunday, we woke up to the smell of this stuff called "breakfast." Have you heard of it? Apparently, it doesn't just come from a drive-through.

Sheree made us breakfast, y'all. You know I didn't want to leave, right? And she helped me make the Pumpkin Pound Cake I've been dreaming about since December.

*swoon*

Then we went shopping at a discount store.

*be still my heart*

We are so going back.

If they'll have us.

Attention: Convention

If you're heading to the NDSC convention in July/August and you blog, please take a moment to check out this site.



A group of Sacramento-area moms has banded together to work on ensuring that we can all pick each other out in a crowd. They will be making special nametags up for all that choose to participate. [I had the pleasure of meeting up with these ladies - +1! - over the weekend. More on that later.]

Also, the registration deadline is quickly approaching, so please sign up soon if you want to come (I'm including myself here). It's a pretty pricey endeavor, but everyone I've spoken with says that it's well worth the sacrifice.

I think I'll be in training for work in Phoenix that week (with Playette in tow - we are so going to melt), but should be back in time to meet up with BD and attend the Pre-Conference sessions. As of this moment, I'm thinking that we're going to opt for the ST-related sessions, which means we'll be hearing Libby Kumin and/or Sara Rosenfeld Johnson speak on Friday.

Speech is a really big one for us right now and I'm second, third, and fourth guessing our current approach almost daily. I know I'm doing the best I can with the information that I have, but this is so difficult.

More difficult than what any parent goes through when thinking about things that will affect their child long-term? Maybe not. But it's hard for me to say since I only have one child. The thought that we may be setting her up for failure is horrifying.

When Playette walks in to a room, people see her disability. It's one that's almost instantly recognizable. What I would love is for her ability to communicate to contradict some all of the low expectations some people will immediately bestow upon her. If she can communicate well, she can explain herself, she can stand up for herself, she can build relationships.

I'd really hate to screw that up.

Learning & Sharing

Since Playette has been diagnosed with good old-fashioned Trisomy 21, I've been not only obsessed with all things Ds, but also all things syndrome, period.

I've met all kinds of folks that have exposed me to diagnoses of which I might not have ever known otherwise.

Here are a few:

Costello syndrome

Cri-du-chat syndrome

Beckwith-Wiedemann syndrome

I love that such a vast Ds community exists. We really do live in a great time where this is concerned. People before us have paved the way so that we now have Buddy Walks and conventions.

The Ds world population is pretty large (approximately 1.5 million people, according to what I've read). If it weren't, I'd hope that another larger group would welcome us into their fold and help us navigate our way on the road less traveled.

Anyway, I was just thinking of these families today and hoped I could increase some awareness on their behalf.

You're welcome here.

NDSC Convention - Who's in?

The 37th National Down Syndrome Convention is being held this year from July 31-August 2 in Sacramento, California.

Click here for the brochure.

Registration just opened recently and I plan to take care of that very soon. At the very latest, I'll be sure to get in before the prices increase on June 22.

If you're not already a member of the NDSC, the cost of the General Convention includes an one-year membership.

I've never been to one of these events before, but I continue to hear good things. Since we're not too, too long of a drive from where it's being held, I think it's totally doable for us this year. The idea of learning from people like Dr. William Mobley, Patricia C. Winders, Joan Guthrie Medlen, Sue Buckley, Dr. George Capone, Sara Rosenfeld-Johnson, Kathryn Lynard Soper, and more? Wow. I mean, those are names from books and articles and web sites that I devour. It's exciting to me to think of what more I could garner from being in the same room with them.

Even better, I look forward to being inspired by other parents - ones who may very well be more proactive than I am. Maybe they have plans or ideas or something that can help me see that it's not magic, it's just a little each day that makes a difference and this is how I can fit it in to my chaotic life. I know I'm not alone in thinking that what I do is not enough. I am busy and disorganized and unmotivated at times. Not the ideal cocktail for the parent of a child that needs more than what is typically required, I think. So, yeah, I feel inadequate and also worry about how what I lack will impact my daughter in the future. If I can go to the conference and even just come away with the belief that what I'm doing is fine - dare I say enough even - than I'll take it.

If you've been in the past, I'd love to hear your thoughts/experiences.

Also, I'm curious about the Memory Book...anyone care to enlighten me?