Monday, December 31, 2012

The Much Anticipated, Yet Sadly Disappointing Snowstorm

Saturday:

A much anticipated, yet sadly disappointing snow is falling outside my window as I type.  Promises of 2-4", what would be considered a "major" storm in this area these days, have been squashed in favor of perhaps an inch.  What was supposed to have started not long after midnight, didn't start until about 15 minutes ago, and it's now nearly 10am.  Disappointing.  Very.  But it is snow, and once the ground is coated, I have promised Samantha that we would build a snowman. 

We actually had snow the day before Christmas - maybe 1/2", but it was enough that the ground and our back deck view out the window beyond our twinkling Christmas tree lights were still coated when we woke on Christmas morning, enough to constitute a very rare White Christmas, the last of which was probably close to 10 years ago.  And then, to sweeten the deal just a little, we were treated to another inch the day after Christmas.  There was a thick enough covering on the ground to make a small snowman...



...and to write on the cars...



...until a cold, driving rain came and washed everything away into a slushy mess a few hours later.


And today's snow held so much hope and promise that we ran out to buy Samantha new snow boots yesterday, and I assured my child that there would be snow on the ground to play in when she woke this morning. 




To be honest, I'm sick of waking in the middle of the night, running to the window, hoping for that bright, silent white fluff, the muffled crunch of tires rolling over soft snow, the rustling of snowflakes landing on the leaves on the tree outside the bedroom, and finding...nothing.

But the winter is young, and we wait (and wait, and wait, and wait...) for the next opportunity to present itself. 

Just a final note...the snow stopped within an hour after writing the post above, barely covering the grass, not touching the streets, and melting by noon.  No snowman this time...

Thursday, December 20, 2012

Be Merry!

I didn't have the energy or the time this year to take photos specifically for our Christmas card.  Weird, I know.  So no holiday card photo shoot.  Instead, I decided I'd take Sammi to the mall and get her picture taken with Santa, in hopes that the photo would be usable.  While I've never had a bad mall Santa pic, there's always a first time, especially when the waste of paper joy we spread through the mail to our friends and family around the world, just waiting for its temporary spot in the holiday home decor of so many, is riding on it.  Turns out the photo wasn't bad.  Not at all!  And with the $20 Shutterfly credit I got as part of the photo package, I just couldn't go wrong.

To be honest, the only reason I wanted to pay for the package of photos of Sammi with Santa was so I could get my own photos of the moment, standing behind the mall's photographer, snapping away.  And as it turns out, I got the better pic. 

I couldn't possibly have asked for a better photo, actually. 

Whenever I try to put Shutterfly code into my blog to share my projects, it doesn't work, and all I can do is provide a link to the item.  So, since I actually ran out of cards this year (I actually ordered more so I wouldn't run out!), I created my own version of the card to print out on photo paper, and here it is.  The difference between this and the actual card is really just the font, and the fact that there's a 2nd side with a small pic of the mall's photo that I purchased. 

My photo (not posed, I might add - Santa just happened to be straightening his hat when Sammi leaned up for a kiss - what LUCK!!):

 
 

Mall's photo:
 


 
 
Merry Christmas to all of you out in the blogosphere, and Happy New Year!!  I hope your holidays are all merry and bright, as ours are certain to be!


Wednesday, December 19, 2012

To Test or Not To Test, Part II


Just when you think you've made a great decision...no...just when you know you've made a great decision, your kid turns on you.  Flat out turns on you and your brilliant decision-making abilities, throwing a wrench into the already creaky works, bringing what you thought was a path to nirvana (okay, maybe that's a stretch) to a mind-numbing, screeching HALT. 

We had been unsure about giving our consent to having Sammi IQ tested before her re-evaluation (read HERE for the background).  I'd submitted our consent form.  Then I'd withdrawn our consent form.  Then, upon discovering that it was actually critical to the re-evaluation process, that the whole thing would be shut down until someone cries uncle, and upon discovering that the people involved in the process were not out to get Samantha nor were they planning on making any changes based on the results of the testing but were just trying to get a full and complete picture of who Samantha is, what she's capable of, we decided to go ahead and re-submit our consent.  It just wasn't worth it to decline, and we'd likely wind up shooting ourselves in the foot (feet?) along the way. 

So we felt good about it.  We were ready for it.  Ready to get the ball rolling, anxious to get to the eligibility meeting in December and haggle over labels. 

And then Samantha got involved. 

Like, she was kinda supposed to be involved, but seriously she has her own agenda and is ready to rain chaos down on a perfectly-well-oiled machine, perfectly-well-laid plan (too many mixed metaphors?).

And that's just. what. she. did.

Testing, Day 1.  In someone's office, with the resource teacher present to lend Sammi support while the psychologist administered the test.  First 5 minutes went great by all accounts, Sammi happily answering each question.  And then?  Everything stoppped.  Something triggered Samantha to completely shut down.  Nothing.  Zip.  Nada.  They tried everything.  Nope.  She wasn't having any part of it.  Not wanting to push too hard, they ended the session and sent her back to class.

Testing, Day 2 (about a week later).  They started out in someone's office, but as soon as Sammi saw the psychologist, she immediately clammed up, presenting a carbon copy of her behavior from the week before.  The Assistant Principal, another person Samantha adores and feels comfortable with, stepped in to try, to no avail.  They tried changing the location, moving it to the classroom environment, everything short of all-out bribery.  Still futile. 

Testing, Day 3 (a few days later).  One more, final try, everyone holding their collective breaths, searching the sky for the alignment of the stars...aaaaaaaand...that ultimately ended as badly as the first two sessions. 

There was nothing more they could do.  You may be thinking that perhaps Sammi would respond if either Daddy or Mommy were in the room, but I can tell you from experience, it wouldn't have made a lick of difference.  Now the evaluation has been concluded with only testimonial from myself and Sammi's teachers, a big hole left in the spot where she would have been able to speak for herself, where she could have likely competently spoken for herself in many areas of the test. 

We got the evaluation report back yesterday, 48 hours in advance of the meeting, as required.  It was tough to read, I mean, really tough, and essentially made it sound like my kid is a giant behavioral problem.  But we know better, and her teachers know better, and we also acknowledge that we need to take it for what it is, and that the report is not what's in dispute, the label is.  The report was really what we'd expected anyway, but that doesn't make it any easier to read.  On the plus side, it was so heartening to read that she's above average in her reading skills (sweetens the painful borderline found on her math skills...), and everyone agrees that she's got great social skills, makes friends easily, and plays very well with the kids in her class.  Oh, and that they like her.  :-)  Some things are definitely more important than others, and that's at the top of my list.

The eligibility meeting is tomorrow afternoon.  We have no idea what to expect.  While we know the results are incomplete, will that mean they have to try again at some point in the future?  You can pretty much bet that attempt will end in much the same way.  Will that mean they're going to accept the incomplete and base their conclusions on the testimony of the adults, and move forward?  I hope so. 

And then that will just leave the question of what label she is given.  I'm honestly not too worried (famous last words?).  I think everyone knows how we feel, and that we're likely all on the same page.  But the one wildcard in the picture is the main decision-maker, someone neither Steve nor I have met, someone neither of us has really had any kind of interaction with, someone that represents the school system, rather than the school itself. 

Fingers crossed... 

Tuesday, December 18, 2012

What's New in Orthodontia

Samantha had her orthodontist appointment last Friday afternoon.  We were prepared for the worst, trying to head a potentially catastrophic and life-scarring situation off at the pass through role-playing and constant discussion in advance.  It was a new doctor for her, one we'd never met before, but who came with words of praise from my own dentist.  My dentist failed to mention if he had super-human powers of calming-effect coupled with skin of steel, impervious to the claws of a cornered, frantic and deranged 6-year old, but we thought that calling his office to ask that before our appointment might not be in our best interest. 

Why an orthodontist, you may wonder?  She's just 6 1/2, after all...  Well, Samantha has a pretty severe underbite.  Cute now, won't be so cute later, but, even more importantly, it already causes complications with her speech.  She speaks very clearly (when she isn't talking so freaking fast!), able to enunciate most letters beautifully.  But there are a few letter sounds that she is completely unable to make accurately as a result of the underbite, not the least of which is the "r" sound.  We've stopped private speech therapy for now, but will likely pick it up again once she's had the correction.  We'd been told by a few people that palate expansion (for the upper palate, to bring it forward, in-line with the lower jaw) needed to happen before a child turned 7, as the palate is more pliable up until that point.

However, as we learned at the appointment, we'll have to wait until both her 6-year molars have grown in (they're coming in now - I saw them when I was flossing her teeth the other day!) and her top front two teeth have fallen out and grown back in.  These teeth are all very important for anchoring the appliance in her mouth.  He's suggested make our next appointment for a year from now, when we can re-visit the topic.

How'd she do at the appointment? 

She dug her heels in and refused to open her mouth for a good 15 minutes, while Steve and the orthodontist talked.  Then, all of a sudden, the jaws of the savage beast opened, revealing 20 beautiful, white teeth - the sweet child I know so well had returned to herself and was ready to get on with the exam!  Just like that.  No bells, no whistles, no cajoling.  Just...ready when SHE was ready

And that, my friends, was that

We have no illusions about next time, but will continue the home-education we've been providing, hoping that her growing, developing brain will finally see the light above the dentist's chair, will finally be able to reason that it's not so bad.  The orthodontist has suggested sedation to take tooth molds, which is not an unrealistic idea.  We'll see when the time comes.  But in the meantime, I consider this a pretty large victory in the battle of wills. 

 

Monday, December 17, 2012

The Bittersweet Images of Christmas

Last week's tragedy put so many thing into perspective for so many people.  I'm not going to blog about it, other than to say it's made each minute with my daughter so much more important, more sweet, more critical than ever before, and was a bittersweet reminder to never take anything for granted when it comes to the time we're able to spend together, enjoying each other's company.  This morning's school drop-off, salted with a sense of urgency in the air from school staff enforcing new, more strict policies and heightened awareness, was a grim reminder.  My heart goes out to all of the families affected by such brutal, pointless carnage, who will live with this wake-less nightmare for the rest of their lives. 

I certainly don't want to come across as glossing over anything by moving on quickly here, but feel that it has to be done right now.  I'm not the one to tell  the re-tell the story, and I certainly hope you can all read between the lines enough to know that I, along with millions of others, have been affected deeply. 

And on I go...

This weekend I discovered some of the sweet images of a child's Christmas around the house, as well as some of the super-sweet images of an adult choco-holic's holiday... 

When I was 7 years old, I made this cottonball Christmas tree at school.  I was in 2nd grade, and felt so much pride at having created something I could bring home to my parents for the holiday.  There used to be foil snowflakes and stars glued on along with the beads, but they've long fallen off over the passage of time, spanning across 37 years.  My mother kept it wrapped up with her Christmas decorations, putting it out on display faithfully each year, and returned it to me, much to my delight, a few years ago.  Don't let the photo fool you...the cottonballs are actually yellow now...gross.

 
 
Yesterday I discovered, with much child-like glee, that the 7-year-old me had written my initials inside the cone.  


Samantha's favorite part of decorating the tree is placing the star at the top.  A star she'd made in preschool two years ago, one that I'm pretty certain she had a lot of help in creating, but was proud to have brought home nonetheless, it is the perfect topper and one I see having for many, many years to come, much like my little formerly white tree.


This ornament was also "made" by Samantha in preschool, in 2009.  Uh, she was 3.  I am certain she had little to do with it, especially given that an identical version of it also came home in 2010.  But I love it anyway.



One of my bosses brought me this box of chocolates on Friday.  I'm so glad I actually opened the box while he was standing there, because I'm sure my reaction was pretty priceless when I got a gander at the exquisitely-crafted pieces of art, delectable gems of organic, preservative-free, Norman Love chocolatey goodness, that lay inside.

 
 
Chocolate just can't get much more beautiful than this.


Or this.


Or this.


And to call this stuff, this confectioner's delight, "delicious," is to do it a serious disservice.  It'd be like calling the Hope Diamond cute.  Now this is chocolate.  Steve and I have sampled 4 of them so far by cutting them in half so we could each taste the delicate layers of flavor in the creative, holiday-themed assortment.


Sweet, yes.  Bittersweet?  Even more-so.  We go on, living our lives, enjoying the small things.  And this Christmas, the friends and families of 28 in Connecticut will not.  May not again ever.  If I were the praying type, I'd be praying for them to find peace one day.  But while not actual prayer per se, I am thinking of them, hoping they'll find peace one day, and I will not forget.

Friday, December 14, 2012

Talk Amongst Yourselves: Blogger or WordPress? Go!



I've been building my new blog over the last few weeks, setting up formats and future post titles, selecting colors and fonts and trying to figure out how I want it to all work, where I see it going.  Of course, as anyone who's starting a new blog will tell you of themselves, I have grand schemes, big dreams for what I want to accomplish - visions of huge readership, paid (relevant) ads, businesses wanting me to do reviews, giveaways, and, of course, something people want to read. 

Can I do that? 

Ha!  Probably not.  Actually, probably not even close.    I don't really know what I'm doing, and I'm certainly no expert in what I'm going to talk about.  I'm excited about it, though!  The blog will is called "Fashion and Frugality (for Kids)."  I had alluded to it in a previous post, some time back in September.  I'd love to get it launched some time in January, but at this point have not yet decided if it's going to live in Blogger or WordPress.  I've set up general templates in both.  (Actually, I was a little bit concerned when the URL address I wanted to use on both Blogger and WordPress was taken - leading to unused pages on both, started in 2010 and then abandoned by their owners.  Would the same thing happen to me?  I determined that it would not.  And I was then just kinda ticked off that they wasted a perfectly good URL that I could have used instead.)

Here are my requirements:

*I want it to be free for now, possibly paid later, once I can prove to myself that it's something worth paying for.  And, of course, the transition from free to paid needs to be simple.  If you're recommending paid, please give me all the reasons you prefer that version, what amazing things it can do (if it can make coffee, that's an added bonus...).

*I want it to look like a place someone would want to go, meaning I want it to look nice.

*I need to be able to track my traffic.

*I need to be able to gather followers.

*I need a Facebook page for it.

*Photo uploads need to be relatively simple.

*I'm a creature of habit, and, after using Blogger for the last 5 years, I need a compelling reason to use WordPress if that's what you're going to recommend.

I'm sure there are a million more requirements that I'll come up with that I haven't just listed here, but I'm scarfing down a bowl of cereal right now and have to go in about 30 seconds so I can do my hair, put some make-up on, get dressed and get to work slightly less-late than usual.

Talk amongst yourselves (but please leave a comment!).  Let me know your thoughts.  I think I know what I should do, but I just need to know why, and if the unpaid version will suffice to start (WordPress).  But I also think I know what would be in my best immediate interest to do because it's simple and familiar (Blogger).  And I know that moving one to the other later on down the road can be painful. 

Go!

Monday, December 10, 2012

Successful (Home) Dentistry

Notmypic
After last week's rant here about Samantha's failed visit to the dentist, after receiving so much thoughtful advice and so many great ideas on how to turn the situation from fear and anxiety to calm and cooperation, I knew I had a tough road ahead of us, but felt that it could be done, felt empowered to make it work.  My mother, faithful reader of my blog, ran out and bought a children's photo book about what to expect when visiting the dentist.  When Samantha saw it on Saturday, she was hooked.  She wanted to read it again and again, and by the time we left to return home from my mother's house on Sunday morning, all Samantha could talk about on the car ride was how she wanted me to play dentist with her. 

Yep, you read correctly...

My kid, whose favorite game in the whole wide world is to play doctor, actually wanted now to play dentist

Hoo boy... 

Let's see...I'm fortunate enough to have a kid that's cool with having her teeth brushed twice a day, who has finally (mostly) learned how to spit (and who takes great pleasure in trying to spit all over the bathroom mirror rather than in the sink...). But she's a kid who will absolutely not let me floss, let alone open her mouth for a dentist.  Now, how to present the experience in a way that she'll remember, absorb, embrace?  I'm still a realist, and I know that even though she can play a good game, can say yes to all the right questions, obey even the most hated requests when it's just play (like giving shots, putting on bandaids, etc.), I imagine that baby steps are still steps in the right direction, and being as desperate as I am right now to see some kind of success, I will do whatever it takes to get her thinking positive thoughts about visits to a dentist.

Excited to get started, she complied with my request to lie down on her bed, head back on her pillow.  I explained that I was her dentist, and that I wasn't going to hurt her, that I just wanted to look at her teeth and clean them.  She opened her mouth for me to count her teeth...10 on the top, 10 on the bottom (I just read today that she should end up with something like 32 when all the adult teeth have come in - holy cow!  Where will they all go???).  I tapped each one with the bottom of her toothbrush as I went.  I commented on how beautiful her teeth are, said I wanted to make sure they were going to grow strong and healthy, both excellent buzzwords for my kid. 

Then I took her toothbrush and brushed them carefully, explaining that the dentist will be using a different toothbrush, an electric one that tickles her teeth and gums, like the one she let me show her by trying it out on her hand at the dentist's office last week. 

I figured since she was having such a good time up to this point, it may be a good opportunity to push the limits a bit. 

"Hey, Sammi, let's floss!"

"Okay!" she said. 

(Excuse me, did I hear you correctly?  I think you just said, "okay" to flossing...)

And that's just what we did.  Each. and. every. tooth. 

Seriously. 

I told her I'd like to do that every day, that it will help to make sure that there's nothing stuck between her teeth and keep them healthy, that I'll do it daily, too (good way to get me in compliance as well), and she nodded in agreement. 

SUCCESS!!

Friday she has an appointment with the orthodontist.  As it's just a consultation, and I doubt he'll want to do anything more than just look in her mouth, feel her jaw, etc., I went through what I thought he'd do with her, reassuring her that he wouldn't do anything in her mouth (gotta make sure Steve explains this to the guy when he gets there so we don't freak her out!).  A couple of encouraging things about this orthodontist - he takes Medicaid, was recommended to me by another mother of a child with Down syndrome, and, as I discovered through casual conversation at my own teeth cleaning this week, my own dentist highly recommends him, and said he's great with kids (note to self:  remind Steve to drop my dentist's name at the appointment on Friday. just for added insurance of a happy visit).  As for Sammi's dentist she's been going to for the last few years, I think it's time to kick him to the curb and look for someone else.  Neither Steve nor I are terribly impressed with him, and I'm sure just that lack of clicking with us must also be felt by Samantha, having an awful lot to do with her negative experiences.  My own hygienist used to work for another pediatric dentist in the area who takes Medicaid, and she said she's amazing.  Gotta check her out for the next appointment in June.

On a completely different note, I got the proof for Sammi's re-taken class photo for the yearbook back this morning. 

Let's just say I've already put in a request to submit my own photo of her instead.

Just as with the dentist, she can talk a good game, tell us she'll do it, show us her happy-face pose she's promised us she'll give the photographer, and then, when the moment arrives, her shoulders slouch, her head goes down, her forehead furrows, her arms cross, and her bottom lip goes out in the biggest pout you've ever seen.  So why does she give the most beatific smile for the photographers at all the Santa sittings?  Is it because Mommy is standing behind them with her own camera?  So I've decided that next year I will go to the class-picture shoot myself and make sure the job's done right. 

*sigh*  



Wednesday, December 5, 2012

Thank You

Wow.  Yesterday's post and all of the comments I received about it, both on the blog and in several Facebook forums, made me really, really sad, but also gave me hope.  Incredibly sad because I honestly had no idea how prevalent this issue of our kids with Down syndrome (as well as those with other special needs) going to the dentist was.  Hopeful because I got many useful suggestions.  I have learned, above all, that there's no easy fix for this, that it will take time, hard work, and stretch the boundaries of my patience.  But, if I can employ them and get them to work to the desired outcome, it will all have been worth it.  Fear of the dentist is no fun, and can cause serious issues down the line.  People with special needs very often have major dental issues and don't get help for them.

So Thank You to all of you who responded, who offered up so much valuable advice or even just a few words of commiseration to assure me that I'm not alone in this.

On to thanks of a happier nature...I may be a bit scarce 'round these parts for a few weeks.  While I'll still be posting some, I think blogging may have to take a bit of a back seat to another project I'm working on - I, along with a friend of mine, the mother of another child in Samantha's class, am nominating Samantha's teacher for a prestigious county-wide Teacher of the Year award.  I really have no words to describe the gratitude we feel for all that she's done, for her support, patience, and encouragement, her flexibility and overwhelming desire to do whatever it takes to help all of her students learn.  The work that needs to go into the packet to turn in for the nomination is quite intensive, and I want to make sure I can do a good job, to present our case in the most compelling way possible.  She really deserves it.  (Btw, if any of you are wondering, it's okay if she reads this...she knows already...)  :-)

Tuesday, December 4, 2012

Samantha and the Dentist

There are adjectives too numerous to list to describe this experience.  I'll give you just a few:

*Frustrating*

*Heartbreaking*

*Sad*

*Torturous*

*Infuriating*

*Counterproductive*

*Useless*

Samantha has been going to the dentist since she was a year old.  The appointments for the first few years went well, with the baby being as cooperative as a baby can be.  Then things changed.  No bad experience to trigger it, just a maturing brain trying to make sense of it all, finding pure anxiety and fear in the invasive nature of the situation. 

This is a kid that fears boo boos and what's underneath a bandaid (I ask for no bandaids whenever possible - it's just not worth the fight to get it off), who used to cry when the car was up on a lift getting fixed, a room that was newly-painted, a fake tattoo, face-painting, or a new front door.  In other words, change to her comfort zones.  And I am pretty darn sure that her body is a BIG part of her comfort zone.  And having the hands of some stranger in her mouth doing whatever it is they're doing is a big No No in her book.

We went to the dentist yesterday.  This time I took her for the first time, instead of Daddy, since he had to be at work early and, let's face it, how awful must it be for him to always be the bad guy taking her to those appointments?  I got a good, grim look at the reality of just how bad it could be.  Trying to make it a positive experience all around just wasn't going to fly, but I did my best. 

To start with, after having to wrestle her out of a corner of the waiting area and into the exam room, I did have to pin her hands as she lay on top of me in the chair, Cinderella on the DVD player about as soothing as the Texas Chainsaw Massacre would have been.  I pinned her hands just until she could figure out that the doctor was only going to put his hands in her mouth to count her teeth, gently, but not before she'd gotten a good swipe at him, claws extended, drawing blood through his gloves.  Eventually, she calmed a bit, although she was still crying.  I released my grip, and he counted each tooth.  Then came time for the hygienist to work her magic.  Or not. 

Right.  Not.

But we did get a little bit further than in past visits, Samantha allowing me to gently floss some of her teeth (wouldn't let the hygienist anywhere near her mouth), allowing me to try the electric tooth brush thingy out on her hand so she could see how it tickles, then eventually (an hour had passed by this time), with the aid of her pink Peltor headphones, allowing the hygienist to put it in her mouth.

Just for a moment.

But long enough for her to clean 4 (!!) teeth.  Hey, it's a start!

So my question is this:  How can I get past this anxiety and resistance (the dentist doesn't sedate for cleanings) when my insurance only covers 2 cleanings per year (even though no real cleaning actually occured)?  So much time elapsing between events just creates more anxiety.  I do wonder if Medicaid would pick up an interim cleaning, although I am doubtful.  Maybe I can get Samantha to come to one of my cleanings somehow, except mine is tomorrow during my lunch break from work, which would be impossible for her. 

It's really a no-win situation.  I hate to see her like this.  I hate not knowing if she has cavities or other issues we need to address immediately.  I hate that she's got to go through a similar experience in just two weeks when she has an appointment with an orthodontist to discuss her underbite issues, although we will really stress to her that there will be nothing invasive, just a look at her mouth.  And trust me, those appointments are going to involve a whole lot of sedation when we proceed with treatment.

Anyway, just a quick vent for today.  I'm suitably jealous of all of you whose children face the dentist with grace, calm and sheathed claws.  I know there are no real tricks, because I tried them.  It's just something innate in our kids - some can, and some can't. 

Mine can't.

Monday, December 3, 2012

The Elf That Doesn't Sit Upon Our Shelf


It was an innocent enough question. 

"What's your elf's name?" asked one of Samantha's chums as we walked together to school on Friday morning.  Before Samantha could respond with something that made absolutely no sense, her usual defense to something she totally can't comprehend, (or about as much sense as "What's your elf's name?" would ordinarily make to anyone), I jumped in, "We don't have an elf." "Why not?" she responded, truly flabbergasted that we'd deign to not have an elf like, um, the rest of the world.  I mean, Harry Potter had one, right?  Carefully choosing my words, I explained that not every house has one.  Fortunately for me, we'd approached the school entrance by this time, and went our separate ways.  Whew.

Facebook cracks me up.  Pour your soul out, and maybe get a few responses.  (For the record, I stopped pouring my soul out on there a long time ago - not good for PR...)  Risk offending people by saying you don't see the use in spending money for a creepy plastic doll that may or may not scar your child for life, that may require a whole lot of planning and ingenuity on your part that you just. don't. have. the. time. and. energy. for., and get, like, 60 responses.  Heaven forbid you aren't going with the flow, bowing to a super-clever marketing campaign, scaring your kids witless...  In all honesty, my original status update on Friday (does anyone else *not* have an Elf on the Shelf?) was written in true ignorance innocence as to the numerous ways people use the Elf on the Shelf.  My only knowledge centered on what I had heard whispered in pig latin by other parents around young, eavesdropping ears, that the silly little thing had to be moved every night because the kids think that it's always watching them and reporting back to Santa on whether they've been naughty or nice.  Scary, right?  Anyone ever see that Karen Black made-for-TV film, Trilogy of Terror from 1975?  (There's this African tribal doll that terrorizes a woman in her apartment.)  Dolls and horror stories are just made for each other.

I have since learned, thanks to my many Facebook friends, that the elf isn't actually always spying for Santa, acting as a cop-out in place of real parenting.  Instead, he's a cute little guy or gal, impish grin carefully painted on its face in some far away land like China, who gets into mischief while the children sleep.  The kids, ever excited to see what he/she has been up to during the night, go on a hunt each morning to find him/her and catch it in the act.  Of something.  Like fishing off the side of the goldfish bowl.  Or trekking across the clean kitchen with flour-covered boots.  Or chucking everything out of the hamper.  Fun, huh?

So there are a couple of things wrong with this kinder, gentler scenario, thus still ensuring that it will not grace our home/darken our doorstep/whatever.  First of all, did I mention that the thing is SCARY?  Just what my kid needs (or me for that matter...), to have to search for an entity of questionable provenance, an inanimate object, as it moves itself through the house while she sleeps.  This is a child who, while completely enamored with Santa Claus, cried the first time she left milk and cookies out for him and woke in the morning to discover they'd actually been EATEN.  Not quite what she'd signed up for.  Dang, the big guy in red is real!!  Second, who the hell has time in the mornings before school to let their kid go searching for it?  Seriously, from the moment Samantha gets up in the morning, it's a veritable rat race to get her dressed, fed and out the door.  Third, I do not have time to craft cute little scenarios each night, making messes I have to clean up each morning.  Really. 

So, I maintain that it's just not for me.  Glad for those who love it, whose children embrace it like a 1-month-a-year-member-of-the-family, who are able to create lovely little scenarios as beautifully as a hand-made craft from Pinterest.  As a matter of fact, I'm pretty sure there are a million ideas of what to do with your elf on Pinterest. 

But I'm not looking. 

Thursday, November 29, 2012

Projects, Projects, Everywhere! Here's One...

This time of year is a real killer when it comes to accomplishing a lot of stuff in a short period of time.  I like to make as many of my Christmas gifts as possible, be it a tin of cookies or a photo book.  But they all take time. 

For the past two summers, and likely next summer as well, my cousin has given us use of his vacation home down on St. Simons Island in Georgia.  The island is beautiful, quiet, serene.  The word of the week is always relax.  A mighty good word, if you ask me.  I decided this year to create a photo book for him to thank him, highlighting some of the details of his house and yard, as well as the "village" and the beach.  Back in August, after our trip, I told him I was making something to send him, and to keep an eye out for it over the next few weeks.  However, that fell during the time that I was frantically trying to finish the DSANV calendar in time for its Buddy Walk debut, and the thought of putting together a photo book in the midst of all that panic was just laughable.  Besides, with Christmas virtually right around the corner, it might make more sense to send it then. 

I finally finished the project, and placed the order lastnight, along with the order for my Christmas cards (won't preview them for you here, yet, until I've sent them all out to their recipients - I will tell you, though, that the photo is completely, hopelessly priceless).  I just want to point out the amazing deal I got (although based on what people have been telling me on Facebook, they've had some even more amazing deals!  I'll have to look more closely next year and not rely on waiting for/hoping for Shutterfly to do another "free 50 cards for bloggers" campaign that sustained all of my Christmas card-giving needs over the past two years) - 1) I'd purchased a voucher from TravelZoo for 30 Shutterfly cards for $20 (could only buy one, though), 2) Shutterfly was having 40% off cards, 3) there was an additional 20% discount code available yesterday only, 4) Free Shipping for yesterday only, 5) some random discount off the photo book, 6) and a $20 off voucher that I'd gotten for purchasing the Santa photo package at the mall last week (that totally sweetened the deal and made me feel not-so-bad about shelling out $30 for the pics!).  So, with all of that stuff thrown in and calculated at the end, I got (incl. the pre-purchased 30 for $20 voucher) 60 photo cards and an 8x11 photo book all for $50.00.  Not bad, eh?  Especially considering the shipping was free - it would  have been $18!  It was totally worth the time I had to spend on the phone waiting for Customer Service lastnight at 10pm trying to get the Free Shipping code to work after it seemed to bounce out when I added in the Santa discount (for the record, Shutterfly Customer Service were very nice, very helpful, and fixed the problem quickly). 

Anyway, if you were able to follow all that, great.  If not, just know that I'm kinda proud of myself for finding all those discount codes and getting them to work such a great deal.  :-)  If you'd like to preview the St. Simons photo book, here it is (my cousin doesn't read my blog, and doesn't even use the internet if he can help it, so no worries about him seeing this...):

(The embed code doesn't look like it's working, so here's the link to the book):  http://share.shutterfly.com/action/welcome?sid=0AbOGTZm0ZMWT14


Click here to view this photo book larger
Turn your favorite photos into a photo book at Shutterfly.com.

Wednesday, November 28, 2012

The Perfect Model

Ever since she was born, I've been hell-bent on taking pictures of Samantha.  Like, lots of pictures.  I know I'm not alone in this, as everyone wants to take lots of pictures of their children.  Children are beautiful.  But I think my motives were bred from the disconnect between my pre-natal vision of the daughter I would bear and the post-natal reality of having a child with a disability that, frankly, there were not very flattering images of in my mind.  Granted, those images were based on dated, institutional photos of the distant past, glimpses of those shuttered away, hidden from view, never spoken of.  I was determined to capture the beauty of Down syndrome, to show the world that our kids are just perfect as they are. 

Not to mention, I really enjoy taking her picture.  She's fun!  She's a perfect subject, full of poise and grace and (usually) patience (especially when bribed with the promise of getting to see the photo immediately afterwards).  Recently she's been getting into the concept of posing for pictures.  Not sure what prompted it, but I'm sure it has something to do with me jumping up and down the positive reinforcement she gets when she follows my instructions and I can get a good shot.  And, let's face it, a little bit of vanity never hurt, either...

When I was a little girl, I suffered through the watchful eye of my father's camera lens, as well.  He had a darkroom in the basement where he developed some of the most stunning black and whites, photos I didn't appreciate so much at the time, but now have a whole new perspective on.  I did come to a point where I would beg him not to take my picture, but that's because self-consciousness and social awkwardness had begun to creep onto the scene.  I'm hoping to bypass that with Sammi, hoping she'll be my willing model for a long time to come.  So far so good.  :-)

 
 
 
 
 

 

 



Tuesday, November 27, 2012

Everything and Nothing From...Springfield?

When I heard that Deanna (Everything and Nothing from Essex), her husband, Aaron and her two beautiful children would be traveling all the way from the outer reaches of Vermont down to the wilds of North Carolina over the Thanksgiving holiday, I couldn't help but jump at the chance to meet up with them somewhere along the I-95 corridor.  Little Addison and her brother, Carter, are just too yummy to resist!  We decided to meet up for dinner on Saturday evening, on their return trip home, at a family-friendly restaurant just outside of Washington DC, in Springfield, VA.  A locale a far cry from anything scenic, and a giant, tangled mixing bowl of overpasses and exit signs, making you feel more like you've been trapped in a blender, it was, logically, the perfect place to meet.

I always love meet-ups with other bloggers.  It's got to have something to do with discovering that they really are human, and more like ourselves than we ever imagine from reading their blogs (not that I didn't think you'd be human, Deanna...).  I think that's been the case in pretty much all but one (okay, maybe slightly more-than-one...) instance (haha, now you're all going to wonder who the one is, and wonder if it's you...LOL  Don't worry - it probably isn't...), and Deanna is no exception.  And something else...I think I remember her saying that I was the first blogger she's met!  How cool is that?  I hope she thought I was human, too...

Addison was a little bit under the weather, but absolutely lovely and sweet despite the fact that she wouldn't let me hug and maul her.  My fear of rejection-by-babies-and-little-kids is strong, so I tend to hold back.  And babies and little kids sense my trepidation and do exactly what I fear they will do.  It's a pretty miserable catch 22.  But I did get one little squeeze in...  Omg, she's soooooo CUTE!!!  And Carter?  What a little charmer!  Those eyes...

Of course, with gabbing and eating and child-chasing, the only photos I have are the ones Samantha took with my cell phone from her seat at the head of the table.  Amazing photographic quality?  Not so much.  Capturing her view of the world (and her thumb...)?  Pricelessly wonderful.

 
 
 
 

Monday, November 26, 2012

Post-Thanksgiving Wallet-Emptying

(Quick note before I get into the main post...Blogger finally forced my hand, after 5 1/2 years of posting and photo-uploading, and I had to upgrade my Photobucket hosting so I can continue to post pictures, change headers (notice I hadn't changed my header photo in 2 1/2 years?  Ever wonder why?), etc.  This coincided with my desire to simplify my layout a bit, and voila, hope you like it!  Btw, if any of you have any ideas about how to make my header photo take up a bit more space at the top of the blog, this has been a mystery that has eluded me for several years now, and I'd love to finally figure this out!)

I neglected to do a Thanksgiving post this year.  I can't actually remember if I've ever done one anyway, but I usually feel that giving thanks happens each and every day, and listing out all of the typical things I am so, so thankful for on Thanksgiving Day feels a little trite, as the list is comprised of things that everyone would expect to hear anyway.  Thankful for my family, our health, my daughter, my husband, the internet, this amazing online and IRL Ds community, etc., etc., etc...  See?  It looks and sounds the same as everyone else's lists.  Not like their lists are bad, because they're not.  I have truly enjoyed reading the things other people are thankful for, and am thankful for those posts and lists in turn.  I could get into all the minute, nit-picky little things I'm thankful for, like how Holly posted that her son (and she) is thankful for underwear.  But not everything's appropriate...LOL 

After stuffing myself silly with my mother's incredibly delicious Thanksgiving feast on Thursday night, I found myself, for the very first time, too full to eat dessert!  Uh, that has never happened.  I have always said that I have two stomachs:  one for dinner, one for dessert.  I think the two glasses of wine I drank clouded my portion-judgement on dinner, and I just. couldn't. eat. any. more.  We came home and tore through the newspaper inserts filled with amazing shopping deals for the wee hours of the morning, and I got to bed early.  Come 5am, I waited for the noise-muffling central heating to come on, tiptoed out of the bedroom, pulled on a pair of jeans and a hoodie over the t-shirt I'd slept in, and silently snuck out the front door, headed to Tysons Corner, the region's super-mall, an awe-inspiring monstrosity of gleaming chain-store goodness.

To give you a clue about how crazy Black Friday is at Tysons, there was a TV crew camped out front of the Starbucks in the mall to document the ridiculous lines streaming out their door and down in front of the neighboring stores.  By the way, there are two Starbucks stores in that mall...  I really needed coffee, but I am not a slave to Starbucks.  I walked a bit further down and got a delicious cup of the must-have 6am beverage from Cinnabon.

No line.

I'm a firm believer that you can't approach Black Friday lightly - you have to have a plan.  Map out your strategy with your list of specific items, and the randoms will come, falling into your lap when you least expect them.  I went to Tysons with one thing in mind, really.  I wanted to hit the sale at one store in particular, Naartjie.  I've written about them before, but they're a South American children's clothing retailer, and while I could have taken advantage of their sale and ordered online, going to the one store in the region and seeing the clothes in-person is so much better.  The photos online really don't do them justice.  This weekend they were boasting a 40% off sale prices discount, which, given how low their prices are already, is not to be missed.  I came away with two pair of pants, and a pair of leggings for $24.  And these are not ordinary pants or leggings, but beautifully-made, beautifully-detailed, super-cool pants...  I wouldn't have it any other way.

Something else on my list was to find a pair of winter Crocs for Sammi.  She loves her Crocs.  Pink fuzzy ones would be just the ticket.  I went to the local Hallmark in my town the other day, but the only color they had was black, and they were an exorbitant $39.99 (by the way, does anyone else find it somewhat disturbing, the random and strange offerings at Hallmark card stores these days?).  In the mall, at the Croc stand, they had the fuzzy ones (sadly only in black, brown and navy blue - I chose brown) for $19.99 and they were buy-one-get-one-free.  I selected a pair of non-winter pink ones in a size up from what she currently has, to get her through next year.  Score!

After a few other non-essential items from a few other stores, I headed home at 7:20.  But not without one final stop.  Target.  For Brave on DVD for a mere $10.00.  After having shelled out $30 for Cinderella a few weeks ago in order to not miss Disney's cruel, unnecessary and shameful (although more shameless to those-who-rake-in-the-dough) limited release, this was a big relief to me.  I got to Target at just before 8am, got a parking spot right up front, and was in and out in under 60 seconds, the prized possession bought and paid-for in my hot little hands, ready to turn over to Santa for his descent down our non-existent chimney and into our gas fireplace.

So while there were no big-ticket items on my Black Friday list this year, I feel like I had a successful trip out.  What were your shopping successes this weekend?
 

Tuesday, November 20, 2012

Thanksgiving Break

To my readers and to those whom I read, my most sincere apologies, but I will need to take a bit of a break through this Thanksgiving holiday week.  Not only was I completely ambushed by the onset of autumn, but I was completely, hopelessly blindsided by the sudden appearance of the winter holiday season, punctuated by the shock of seeing Santa in the local mall (don't think we didn't take advantage of the pre-Thanksgiving lack of lines, though).  No more warm breezes, no more grass between my toes, no more beach bag packing, no more relaxing on lazy days...nope, all gone.  And, if the Mayans have it correct, they'll be gone for good.  But that's a whole 'nother post for a whole 'nother day...

The holiday season means I need to get cracking on my gift-creations.  Holiday cards and photo books, in particular.  I have 3 different ones I need to make, and while the DIY photo craft websites make it super-easy to do, it's also super time-consuming, and when tasty deals (buy 1, get 2 free, anyone?) are dangled in front of your face, they usually give you only a day or two to take advantage of them.  Sure, I could have created my books long in advance (yeah, with all of that luxurious spare time I always have...) and just ordered them when the deals came, but I laugh (!!) in the face of preparation and cry at the true reality of procrastination.

(on a side note, TravelZoo is featuring vouchers for $20.00 for 30 Shutterfly holiday photo cards - the vouchers can only be purchased through tomorrow, but can be redeemed up until Dec. 22nd - click here)

As such, I need to buckle down and get some stuff done over the next few days.  Plus, no one (myself included) even reads blogs over holiday weeks or weekends, so why waste my efforts, right?

So I leave you for the next few days with a photo to make you laugh, and a wish to you all for a very, very happy and healthy Thanksgiving.

The stuff dolls' nightmares are made of.  Or at least the little guy sitting at his
computer...  I think he's saying, "Holy crap!"

Thursday, November 15, 2012

Developmental Growth Spurts: Victorious!!

Sometimes you just know

You know that there's something...different.  Something tiny but incredibly powerful has fallen neatly into place, culminating in the blissful marriage of maturity and cognitive growth.  And how beautiful that marriage is...a marriage meant to last.  I hope.

As surely as the growth of the human body can be detected through sleeves and pant legs that are suddenly, slightly too short, growth of mind and spirit can also be detected through that sudden realization one day that the last few weeks have been...easier.  Not like things aren't always easy, because really, they are!  But something has clicked for Samantha, evidenced by the lengthier, more mature conversations we've had, her ability to comprehend far more than ever before, to begin to absorb more conceptual ideas, to transition so much more easily from one activity to the next, to participate in class (!!!!).

It really was quite sudden.  A bright little light shining on her, made even brighter by the smile of enthusiasm and pride that radiates across her face at the knowledge of a job well-done. 

This kid keeps me in check.  I've said it before, and will say it again, but I will never, never underestimate her again.  Never will I think, oh, she can't/won't/couldn't.  She CAN/WILL/COULD!  Who knows? 

My kid.  Who would NEVER participate in a group activity.  Who would NEVER get up in front of the class for any reason, preferring instead to cross her arms, lower her head, pout...

Last week, when called upon to present her Timeline project, a board with a photo of her from each year of her life so far, accompanied by sentences written by her (yeah, yeah, I told her what to write) about her First, Second, Third, etc. years, got up with no hesitation, walked to the front of the class, took the pointer from the teacher, pointed to each photo on the timeline, and read each sentence to her classmates.

And, holding their breaths both in astonishment and in fear of losing the moment, both her teacher and her aide were floored.  Needless to say, I received a very excited e-mail from her teacher immediately afterwards.  I read it over and over again, tears in my eyes, absorbing each word as my eyes moved across the message, barely able to believe it myself. 

The next day we learned that the class would be doing a Thanksgiving presentation the following Tuesday, in which they would be standing in groups, in front of their classmates and their parents, reading a poem about the Pilgrims.  Sammi's group of 3 students would have 4 lines to recite together.  4 lines.  In front of the class.  Yeah, right.  Good thing there were 2 other kids in her group or else her part would never be performed...

The day before yesterday I witnessed a real miracle.  I saw my girl, happiness and excitement glowing on her face, her eyes fixed on me, wait her turn patiently, stand with her group, recite her part perfectly, and grin from ear to ear with pride and accomplishment when they'd finished.  "I did it!" she exclaimed as the next group began their part in the program.  Mommy nearly burst with excitement and the promise of a truly bright educational future.  In just a week, a key part of her IEP has been accomplished, the part that kept me up at night.     

She did it!

Gah!  Stop twisting your hair!!!!!!  Btw, I'd post video of her stage debut, but in the interest of keeping her friends anonymous, I can't.  Friend me and check out my FB wall if you want to watch it...

Wednesday, November 14, 2012

What I Want My Daughter to Remember

I've written about childhood memories before, about how I want to create long-lasting, positive moments that will stay with Samantha forever.  Sometimes it's the simple things I remember and want to pass along, the feel of the grass under bare feet, the smell of the sky after rain in the summer, the sound of children playing in the twilight outside my window as I struggled with the fact that it was my bedtime and I was too young to join them...  My memories live in an eternal summertime, a 5-year old's dreams.  But the reality is that memories are always being made, while learning new things, opening ones' eyes to new experiences, even, sometimes, doing very little at all. 

My memories are mostly happy ones, peppered with the occasional raised voice, a look of disappointment in the eyes of my parents, the anxiety of a teenager in "love."  I can't make Samantha's memories for her, I can't make them be perfect and happy, bathed in that endless summer sunset, but I can help facilitate the creation of some of those moments.

We thrive on routine, Samantha doubly so.  It's in her genetic make-up.  Change that routine, and you're either met with resistance, or sheer joy at the novelty of the bending-of-the-rules, just...this...once...  An unscheduled stop for ice cream.  A quick jump on the bed.  An extra episode of Curious George.  Those are some of the things I hope she'll store away in her memory banks, the things that make her smile. 

But more than anything, I want Samantha to remember just how much I love her, whether my voice is raised or not, whether I'm incessantly rushing her to get ready for school or cuddling her before bed, whether I'm away from her, at work, or by her side on a weekend adventure.  I want her to remember how much she is valued by so, so many people, how she has changed so many, made them better for having had the privilege of knowing her.  I see no reason why she wouldn't remember these things, as they are present each and every day.  They are the constant.  That a child should grow up with so much love and positive affirmation should always be the constant, no matter who the child is, where they live, who their parents are.

It's simple.

(this was inspired by Ellen Stumbo's writing prompt for this week, which for some reason I can no longer find the link to...)

Tuesday, November 13, 2012

Just Like You

I know this has made the Facebook/blog rounds a few times already in recent weeks, but I only just yesterday finally had the chance to view it.  Beautifully, beautifully done, a little uncomfortable when discussing some of the issues people with Down syndrome can have (especially when they're spoken about by their "typical" friends - hugging, memory issues, leaving the gen-ed class for resource time, sleepiness?), brought tears to my eyes.

I wish there was some way I could reach each and every person on the planet without the connection to someone with Down syndrome and have them watch this - it should be compulsory in schools for students and teachers alike.

Have any of you ever had luck in introducing something like this into your child's school's mandatory viewing?  Morning video?  Assembly?  Have any of you approached your child's school with this video?  Do you plan to?  Are schools even allowed to do that?  Have you shown this to your child with Down syndrome?  If so, what did they think?  Was this before or after you began talking to them about Down syndrome? 

I've been talking to Samantha more and more about it lately, and think this may be on the view-list pretty soon.  Self-awareness was one of my biggest questions when she was born - would she ever recognize that she was different?  Would she understand what Down syndrome is?  I know with absolute certainty that she will, and I'd like to raise her own self-awareness before someone else beats me to it.

If you are reading this and not connected to the Down syndrome community (other than by association with us!), would you please consider sharing this video in some way?  The more people who can view this the better, helping to enrich the lives and social interactions of people with Down syndrome, of all ages, everywhere.



Monday, November 12, 2012

Paper Cranes



In Japan, the crane is said to be a holy, or mystical, creature.  It's said to live for a thousand years.  Legend has it, if someone folds 1,000 origami cranes, they are granted eternal good luck.  I have no intention of making 1,000 of them, but a friend has organized a countdown calendar exchange, something like an advent calendar, although it can be counting down the days to Christmas, Hannukah, or whatever one's beliefs/interests are, and I've decided to make 25, each with a hanging loop for a tree.  Once finished, I will package them and mail them off to the person with whom I have been paired, set to arrive by December 1st so she can open one per day up to Christmas. 

When I was 13 years old, bored and friendless and living for a year far-away in Japan, I learned to fold cranes, inspired by a folded unicorn that the object of my youthful crush and then future boyfriend sent to me shortly after my arrival there.  I became quite proficient quite quickly, making smaller and smaller copies with delicate precision, and, much like riding a bike, it's something you can never forget.  Your fingers know where to go, how to crease ...just...so... Folds crisp, exact (please don't notice the squishy head on the one in the photo...).

I'm excited about this project.  It combines the spirit of giving, the joy of anticipation, and the gentle comfort of hand-made creations.  Currently I have completed 7 of the 25, along with little origami envelopes to enclose them in.  I will number the envelopes from 1-25 and place them in a box before mailing them to their new home.

Several weeks ago, I showed Samantha the process of folding a crane.  She was far less interested in the crane, than in the fact that you could fold paper to make something wonderful.  Her attempts, while little more than pretty well-squished-up sheets from a drawing pad, were presented to me in royal fashion, a command that I close my eyes until the enthusiastic pronouncement of "Ta DA!!!"  Her pride made me proud, and I fawned over "it" for as long as the smile radiated across her face, until something more pressing caught her attention and she moved on.

I'll teach her one day.  May have to start with a folded heart, though.

Wednesday, November 7, 2012

Pure Joy

The title of this post is kind of cliche.  The word "joy" may be a bit over-used in the Down syndrome community when referring to our kids, but there's really no way around it.  Joy:  the emotion of great delight or happiness caused by something exceptionally good or satisfying; keen pleasure; elation.

That's how she makes me feel.

And, lately, it seems she's had some sort of cognitive and developmental growth spurt, maturing rapidly, evidenced by new powers of observation, speech and language, and behavior.  Doing new things, holding cohesive conversations, reasoning...all so easy now.  Transitioning, something that had been the bane of my existence just a few years ago, is now a non-issue.  She shows me, more and more, the person she's becoming, the person she'll ultimately be, and I love it even more than I'd originally ever thought I would.  The young woman who will stand by my side, traveling, exploring, enjoying life and the world around us, is taking shape, cohesively forming before my eyes. 

On Sunday we went to visit a local woman and her gorgeous baby boy, who has Down syndrome.  To say Samantha was an angel is a gross understatement.  The beautific smile on her face at holding the baby, the care with which she held him, touched him, the sweetness with which she looked at him, made. my. heart. melt.  She loved every minute of the hour-long visit, beautiful, sweet, patient, a perfect little ambassador to a new mom to the fold, practicing her self-advocacy with the adeptness of a pro.  My heart sang.

Yesterday morning, at the crack of dawn, I took Samantha with me to vote, as she was off school, and Steve was working.  I expressed to her ahead of time the importance of what I needed to do, explained that we would likely have to wait in line for a while, that she needed to be patient.  I let her bring two books, and told her I'd have my cell phone if she wanted to look at the pictures and videos stored on it. 

The polling location was at her school, directly behind our house.  The line was long. 

The books and cell phone never left my satchel. 

She was awesome

And, in true Samantha style, she made friends with everyone around us, chatting up a storm, being silly (I had to explain to my fellow line-mates that contrary to appearances, I did not give my child coffee before we left the house), reading every sign posted on the walls in the hallway, finding one of her own class projects displayed on a board, and drawing grins and laughter from others waiting in line nearby.  "I can tell she's been reading for a long time," the woman behind me said as Samantha read the bathroom rules on the wall outside the girls' room.  I don't think the people around us saw Down syndrome.  I sure wasn't thinking about it.  And if that's what they did see first and foremost, I think minds were changed, preconceived notions and stereotypes removed.  I do think they saw a precocious 6-year old who loves her mother, who loves her life, who is smart, polite and funny.  

Because that's what she is.

And that's what I love, what equates to pure joy.             

Tuesday, November 6, 2012

The Bowling Party

Today is the 21st anniversary of Steve's and my marriage.  21!!!  Wow!  And to celebrate, we'll be watching the election coverage, a glass of wine in my hand (gee, I wonder if I can make up a drinking game around the election...take a swig every time another state's results are in...).  Sounds good to me!  We really don't do much on our anniversary usually, exchange a card, have dinner...  Every 5 years we'll say we'll do something grand, and every 5 years we say the same thing...no money, no time...  LOL  But we love each other, and have loved each other for 22 years, and have the most amazing gift we could ever have imagined in our sweet girl.  Happy anniversary, Steve!!

I've been laying low this past week, little time or opportunity to write or edit pictures in the wake of 31 for 21.  I finally managed to complete some photos that had been sitting for a few weeks.

Not only did we celebrate the 6th birthday of one of Samantha's friends two weeks ago, but we also had a breakthrough of sorts, and a new experience to boot.  I've said before that I refuse to allow her headphones to be a relied-upon crutch, but knowing that a) we were going to a birthday party and b) the birthday party was in a bowling alley, I thought the occasion was more than appropriate to break them out.  The night before, I asked Samantha to remind me in the morning to bring the headphones with us. 

I just love that I can ask her stuff like that, and she really takes it to heart, follows through.  She's getting to be so grown up, I can hardly stand it!  And waaaaay long gone are my days with her when I would be counting the minutes until she goes to bed and I can get a breather, and long have we been in the utopia of time spent joyously together, looking forward to the next set of waking hours in which to do it all over again.  She's truly my best friend, my companion, my little buddy who is so much fun to be around, whose neural pathways are ever-branching out into complex tangles of knowledge and a growing wisdom I never expected at such a tender age.

Now where was I? 

Oh yes, the bowling party. 


Is it just me, or are bowling shoes, so hideously ugly on adults, just too cute to bear on little kids' tiny feet?


Samantha had never been bowling.  I think I have such negative connotations attached to people with intellectual disabilities, Down syndrome in particular, going bowling, because of a certain Dead Milkmen song from the 80s.  I won't say the name because it bothers me so much, but if you look them up, you'll likely find it.  I used to like them back in my burgeoning early alternative years, but always was left with a bad taste in my mouth at that particular song, could never say the title.  And it brought to mind a stereotype that may or may not have existed at some point in time, one that was created in my mind as a result. 

But seriously, to hell with them

I think I can finally move past it, can create new associations, can enjoy others enjoying such a fun pasttime, can see it all for what it is - fun for all.


Samantha totally surprised me at her ability to pick up and carry the heavy, pink bowling ball, never dropping it on the floor (unlike some other child who dropped theirs...on my foot), so proud of herself as she watched it slooooooowly roll to its destination, occasionally tapping the bumpers in place to prevent gutterballs.


Every time the ball hit its mark, she jumped up and down, yelling, "Yaaaay!"  And how exciting when she bowled a STRIKE!! 



We'll definitely do this again.  I think she has a taste for it now, and Steve and I happen to love it as well, although I honestly can't remember the last time we went. 

Maybe that's what we can do for our anniversary... 



Thursday, November 1, 2012

My *Brave* Doctor


Her nametag says, "Dr. Samantha."  Her hair screams Dr. Merida.  Uh...or Carrot Top.  Take your pick...  She could have been an ordinary doctor, but what else is there to do with a Disney movie princess wig gathering dust in the closet?

In the aftermath of Hurricane Sandy, the sun finally made its appearance yesterday, blinding us after a long run of dreary, grey darkness.  The evening was cool, the air was still, and conditions were perfect for the hoards of stir-crazy children anxious to get out after 4 days off school and one shortened day back. 

Lastnight had to be the most fun Halloween yet for us.  Each year it gets better and better, from the very first, not quite 2 months into my pregnancy, when I walked down the street wiping tears from my eyes at the overwhelming thought of finally having a little one to share such joyous, traditional childhood events with, to now, when Samantha's unbridled excitement betrayed her growing maturity.

Her growth over the years has been evident, initially hesitant at walking through the neighborhood adding candy to the basket Mommy and Daddy would ultimately inhale themselves, finally loving the whole concept of Halloween, striding confidently from door to door, thanking the homeowners for their generosity, then taking her own station on our front steps, bowl of chocolate miniatures in-hand, doling out 2 to each costumed visitor and wishing them a Happy Halloween.

This morning the children at school were buzzing, a vibration in the air of excess energy, mighty suspicious of an early-morning candy high.  I pity the teachers that will be forced to deal with the aftermath as each head begins to droop, like spring flowers wilting in the heat of summer.

Wednesday, October 31, 2012

Day 31: We Made It! (Almost)

Wow, Day 31!  I almost made it through the month.  Not like Down syndrome awareness ever stops - it's continuous, fluid, a perpetual force that maintains a momentum created through the daily efforts of countless advocates and self-advocates world-wide.  And it's important.  I'm not militant by any means.  I intensely dislike shoving any kind of information down anyone's throats, preferring a more gentle approach.  I advocate through my day-to-day actions and interactions, through my blog, through my social networks...  But the 31 for 21 push is quite the exercise in staying power, and I certainly hope I have reached at least one new person in some way, showing people how ordinary our lives are, how Down syndrome should be celebrated, not feared, made fun of, ignored.

Tonight is Halloween.  Samantha is going to be a doctor (surprise surprise).  I'm hoping I can convince her to put her wig from Brave on as well, and she can be Dr. Merida, but we'll see...  I think I'll have a little breather for a few days, then pick up again next week with my usual posting schedule, but I promise, there will be photos.  :-)

Happy Halloween, Happy Down Syndrome Awareness Month, Happy Post-Sandy Sunny Day, Happy Everything.   

Tuesday, October 30, 2012

Day 30: Little Girl Stuff



I'm honestly not sure what to say today.  I really have absolutely nothing prepared.  You'd think that being home yesterday all day because of the hurricane would give me time to blog, but between trying to get some of my job work done, cleaning a lot around the house, getting Samantha's homework done and giving in occasionally to her pleas to come play with her, I had little time to even think about blogging.  I need to write a post about Samantha's experience on Sunday, bowling for the first time, but editing photos isn't high on my list of stuff that needs to be done asap right now, and edited pictures are necessary for the post. 

I tried to be productive yesterday, and managed to have Sammi parked in front of the TV for only half of it, but that TV time also included a viewing of Disney's temporarily re-released, digitally re-mastered, wallet-gouging dvd, Cinderella, which I purchased over the weekend.  Samantha has never seen Cinderella, although, like any other little girl, knows and loves her.  I, on the other hand, had seen the movie when I was her age, owned the soundtrack on vinyl, along with the accompanying picture book sewn into the album cover itself, and loved it.  Something about the music, the clothes, the prince...you know, little girl stuff.   As with all other little girl rights-of-passage, I was totally excited to introduce Sammi to the film, to watch her as she watched it, and to watch it again, myself, after so much time. 

Other than two occasions in which Samantha got up and turned the video off (apparently old kings and arch dukes aren't very interesting to little girls), she seemed to love it.  What's not to love?  My favorite part of the observation, in addition to my post-film instruction of how to say bibbity bobbitty boo, was when one of the ugly step-sisters was about to try the glass slipper on, saying to the arch duke, "oh, the slipper is MINE!"  Samantha shrieked, "No!  That's Cinderella's slipper!"  Guess no check-for-understanding was needed this time...

And guess what??  Apprently Brave is being released in a few weeks!! 

That one can wait for Christmas.

Monday, October 29, 2012

Day 29: Interesting Things To Do With Jello

Stop snickering, and uncover your eyes.  Nothing inappropriate here!  Surfing blogs the other day, I came across the recipe for Jello cookies, and was intrigued, especially considering that I had just about every ingredient already in my cupboards except for the Jello.  One easy shopping trip later, and we were off!

Don't let the photo fool you, Samantha was not much of a help, craning her neck to see the TV in the next room as she half-heartedly rolled the colorful dough balls in sugar.  They're delicious and kinda pretty and seem to be perfectly-suited for the upcoming holidays, but man, they've got a lot of butter and sugar in them!  And with all of the acid in the Jello, they create an instant heartburn environment (next time I'll use less powder than the recipe calls for - come to think of it, perhaps I used the wrong quantity?  I'll have to look again...).  Also, they're a bit of a pain to make.  Easy, but time-consuming and messy.  I still look like a mass-murderer, trying to wash the pools of red food coloring off my hands. 

The recipe can be found here.  In our case, Red = mango/cherry/strawberry flavor (I didn't have a full packet of any of those, so I figured they'd be a winning, if not heartburn-inducing, combination), Green = lime, Yellow = lemon, and there was a batch of Orange (not pictured) = well, you know, orange.