The Bates Motel

Sorry, I Got Nuthin' Today...

2012-02-10T08:07:00.000-05:00

...except this sweet, silly, smoochable little face. Happy Friday!

In Search of Perfection: OCD and Down Syndrome

2012-02-09T08:11:00.000-05:00

Somewhere, embedded in the extra chromosome that graces the genetic makeup of our children, there is a little compartment labeled, in neatly-organized organic matter-type letters, "Perfectionism," and I don't mean the kind that just says our kids are perfect (which they ARE!). I'm pretty sure they all have it. Somewhere. Although, in anticipating some of your responses about how messy or disorganized your children are, I'll venture to say that that little "compartment" may not have been accessed just yet...

First of all, I have not done any research into this topic, although I'm sure plenty of data exists. But leaving it up to individual experiences and heresay is so much more fun, don't you think? And trust me, if I thought there was a problem, I'd be all over the web in a hot second to find out more from that expert data, wherever it may lie.

Samantha likes to have order in her life. Advanced warning of things-to-come is key to a smooth transition from activity to activity, and following the rules on how things should be, or how she thinks things should be (often based on something she'd observed us doing on at least one occasion, whether right or...gasp...wrong...) is just something she does (okay, not always, but most of the time). Especially when we've given her some sort of reasoning as to why something should be done a certain way. Telling her that a seatbelt needs to be on so she can be safe (thank you, Dora!) is a very compelling reason, and she's obsessively gung-ho about it, to the point where she yells for me to wait and not drive the car yet because Daddy's seatbelt hasn't been fastened yet. Okay, okay, I got it! Right now we're working on the "Don't use too much toilet paper because it'll break the toilet, okay honey?" lesson.

Closing the downstairs powder room door is a biggie for her, and one for which I don't believe I've ever given her reason to feel that need. I'm thinking that she's seen us do it often, which is reason enough for her.

Changing her underwear twice a day...well, I have no idea about that one... Any time there's a clothing change, it has to include underwear. Or she has a whiny little fit, eyes squinched, feet stomping, arms crossed... Do I give in? Well, unless I can provide a compelling reason not to let her change, yes.

There was a scene in Monica and David that both Steve and I call back to memory often. Monica and David were making their bed, carefully, neatly. When it came time for them to place the little decorative pillows on top of the spread, there was an urgent back and forth between the two of them, one moving the pillow into a position they thought was perfect, the other tugging it back just slightly into what they thought was the right place. Samantha does that when she helps me make our bed. If I move it to where I want it, she jumps in and quickly edges it back, just. so.

Consistency. Order. Object Permanence, perhaps. Control.

Such important concepts that shape the brains of our children.

Is this a bad thing? Nah. Well, not unless it starts to get in the way of daily functioning or leads to anxiety. Applying reason to the situations may help mitigate some of the less-desired behaviors, but for now, I'm going to pick my battles and enjoy the nice, (mostly) tidy room with Samantha's name on the door.

What has your experince been with OCD and your child with Down syndrome?

Wordless Wednesday: Rainbow Bright and The Artist's Showroom

2012-02-08T08:05:00.000-05:00

Educating the Masses (A Quick World Geography Lesson...)

2012-02-07T09:44:00.002-05:00

So today I'm gonna do my husband a little favor and give my fellow Americans a quick lesson in World Geography (Rochelle, let Jason know this is for him, too!). I won't say why I'm bringing this up today, but let's just say I'm reasonably certain that this is not being taught properly in American schools, threatening to ruin our long-standing relationship with our closest ally.

I am talking about the United Kingdom and all of its parts. If we fall out of favor, what would we do without Masterpiece Theater? Posh and Becks? Cadbury? Dr. Who? Madonna? And do you have any idea just how many of the television shows we produce ourselves in the US were actually based on shows previously and originally created by the folks across the pond? What on earth would we do without those? I think we'd be forced to revert to new programming, the likes of Starsky and Hutch, Man from Atlantis, Happy Days...

So, in an effort to promote peace, here we go...

England, Scotland, Northern Ireland, Wales and Ireland (Eire) are all countries. That's right, folks, they are each separate and individual countries.

Great Britain is comprised of England, Scotland and Wales.

The United Kingdom is actually a "sovereign state" (don't worry, that won't be on the quiz...), more formally known as The United Kingdom of Great Britain and Northern Ireland.

Still with me here?

Ireland (Eire) is a completely separate country, not in the United Kingdom.

Okay?

Now, just to reiterate and check for understanding:

* England is a country. Here is the flag of England (the symbol is known as the St. George's Cross):

* Scotland is a country. Here is the flag of Scotland:

* Wales is a country. Here is the flag of Wales:

* Contrary to what many, many people think, this is NOT the flag of England:

It is the flag of the United Kingdom (hint: see how it contains elements of the flag of England and the flag of Scotland? Wales is not represented due to factors in play at the time the flag was designed...).

I think it's time we begin to practice Country First language. England is a country. A person from England is English first, British second. Call Steve British, and he'll be quick to correct you, to tell you he's English. Why shouldn't he be allowed to feel pride in his country? Sometimes we Americans can be pretty self-centered to think that downplaying the importance of someone else's national origin shouldn't be offensive to someone. I won't even go into the cringe-worthy pain and offense he feels when people think it's funny to mimic his accent. It's not.

In teaching school children, I think this distinction should be made. It doesn't have to be a complicated lesson, but it does have to be something that is understood.

'nuff said.

Okay, now, back to your regularly-scheduled airing of the Golden Globes...

Hearing Our Voices

2012-02-06T08:08:00.001-05:00

Let's face it, there just isn't enough money for everything. Needing more money for things, tangible or otherwise, is just a fact of life, unless you're some sort of mega-star bleeding enough cash to pretty much close off the entire maternity ward during the birth of your beloved daughter or trick out a new babymobile with enough bling to be seen from Jupiter (Beyonce, you know I'm talkin' about you...).

County public school systems are no exception to the need for money, and the need for bucks at the County level affects so, so many people in a rather abrupt trickle-down effect. Perhaps spalsh-down effect would be more accurate. Our county announced recently that it was considering cuts to the Special Education teachers' salaries. One such cut would involve reducing the hours-per-day of the Special Education classroom aides to make them ineligible for benefits. These aides are incredibly valuable and brilliant resource teachers here, most of whom do what they do because they love the job of working with the children, not because they're making much money, which they're not. The result of the cut would force many of these teachers to resign, causing less classroom support and making self-contained classrooms an ever-present, proliferating wave of the future, making an archaic jump backwards, away from inclusive classroom settings, and stunting so much of the progress of the last 20 years.

Last Tuesday the School Board opened their doors to an evening of public comment at one of their meetings. This was the last opportunity for people to speak out in front of the Board before the decision is made. Now as much as I, personally, would have loved to have attended, Steve and I discussed it and decided that he should go and speak. I'm way too shy and know I would have instantly balked, and having a man, a father, get up there and speak out for his little girl also would likely make a bigger impact. He called and got himself on the speaker's list, at number 53.

The audience was comprised of approximately 400-500 people - teachers, educators, parents, etc. He was a little dismayed to see very few parents there speaking out against Special Education cuts - the bulk of the speakers were bus drivers, another group being similarly affected. He left after he spoke, and there were many speakers still to come, but of the 53, only about 10 were there regarding Special Ed.

He got oohs and ahhs when he showed a blown-up and laminated photo of Sammi from her preschool graduation, and had a house-full of silent applause, arms waving furiously in the air, when he finished. He was followed out by a reporter from a local NPR affiliate radio station and briefly interviewed, the audio of which aired the next morning, missed by us but heard and recounted back to me by a friend.

Below is his basic speech that he gave, minus some effective ad-libbing, at which he tends to shine. He has also sent an e-mail to the Board, something I am hoping all those who were absent or who did not speak that night have done.

This is a picture of my daughter, Samantha Elizabeth Bates. Remember that name, because given the opportunity through education, she may be able to achieve things that would not have been possible without the dedicated Special Education teachers and aides in (this) County. Please do not restrict my daughter's education by cutting any of the positions currently occupied and by not supporting other proposed positions.

My daughter did not choose to be born with Down syndrome, but she *does* choose to participate alongside her peers in reading, writing, playing and learning. This would not be possible without the support and love of the great team of special educators involved in Samantha's life.

Samantha and students like her have the right to be given the chance to fulfill their potential. Not just part way, but to the limit of what they are capable of achieving. Samantha loves to read books, she loves to learn her numbers and letters. She loves to play doctor and has told us numerous times that she wants to *be* a doctor. That may not be a realistic option, but at least give her the chance to try, and don't restrict her education because of money and statistics. You have the opportunity to make the lives of these students exciting and less restrictive. They will have many challenges throughout their time in the school system. With your help, they may just surprise you all. I'm going to go now, so my daughter can read *me* a bedtime story.

Thank you for your time.

For those of you who live in this county and were not able to make it to that meeting, you can still submit an e-mail to the School Board. Do it today!! - I think tomorrow is decision-time... Fingers crossed...

Olivia Goes to School

2012-02-03T09:44:00.000-05:00

Yay! I stuck to the plan I gave myself last week, and actually saw the memo about today being Take-Your-Stuffed-Animal-to-School-Day! Much to my chagrin, it was in a massive stack of papers that came home with her on Monday, including a report card (can't miss that one...), a list of her classmates' names for Valentines Day cards, and some random, assorted, pulverized and pounded small trees...

So yesterday, with Samantha in enthusiastic agreement, we decided Olivia would join her today. Olivia-who-never-wears-clothes. But today, because she was going out in public, Samantha agreed also to keep the little pig's clothes on. For modesty, you know? After some ~~dumpster-diving~~ digging through the large pink bin of random, assorted doll clothes, I found the missing garments, and voila, she was presentable once again.

Yesterday Sammi took Scat Cat, the new book Gramma and Grampa gave her, with her to school, along with some instructions by Mommy and Daddy for her to attempt to get up in front of the class to read it to everyone. Little by little we've been working with her teachers on eliminating her fear of group-participation activities. I'm still a bit baffled, though, as to how this gregarious, loquatious (I'll never forget, that was one of my 6th Grade new words of the day! Thank you, Mrs. Horner!), outgoing little social butterfly can clam up when it's her turn to do something in front of her classmates. Even in small groups. *sigh* So yesterday, at the teacher's prompting, Sammi got out of her seat, took the book, got into the rocking chair that's used for storytime, looked up...and saw the shining faces of her classmates. And stopped dead in her tracks. Okay, so it's a first step, right? Someone on Facebook (thanks, Beth!) suggested that perhaps she could try reading to one of her stuffed animals in the classroom, thus shifting her focus to the doll. Well, with today being Bring-Your-Stuffed-Animal-to-School-Day, that was a perfect and timely suggestion! I mentioned it to the teacher this morning, and she thought it was a good one, too.

Let's see how this goes...I'll fill you all in next week...

Bringing Charlotte Home

2012-02-01T08:14:00.001-05:00

I know I haven't posted in quite some time about the beautiful orphans with Down syndrome that are left in Eastern European orphanages and mental institutions. Those beautiful children who deserve to have mommies and daddies, but instead who have nothing.

I also know that unfortunately, they can't all be saved at once from the awful fate that awaits them. But one at a time, even one life saved and one forever family found, makes a HUGE difference to that one.

One at a time, folks...

Charlotte is one. And her Mommy and Daddy, a family local to us, need help desperately today, in preparation for their next visit to Charlotte's country next week, where they will meet with the judge who will give them permission to be her forever family. Funding is not where it needs to be, and anything you can do to help will be so appreciated, and will help to make that difference.

Please visit Patti's blog here for details, including photos of this heartbreakingly beautiful little girl, and for some great giveaways you can win by helping out. But the best prize of all is having Charlotte safe and sound in her own bed, having her own Mommy and Daddy to tuck her in and read her a story, having a chance at a life every child deserves.

Early Plans

2012-01-31T09:21:00.000-05:00

Birthday party plans, that is. Like, really early. Like Princess' birthday isn't even until the very, very end of May, but I'm already starting to obsess about what the theme should be this year.

Last year was the most fun to plan, the most fun to put together, and the most visually beautiful 'do we've had in Sammi's 5 years of parties. The theme was Olivia, and you may remember these two posts:
Chasing the Crafty DIY Birthday Party and Sammi's Olivia Party Picture Overload.

Samantha doesn't have any strong frontrunners in the favorite character department this year, other than the perennial favorite highlighted already last year, and she doesn't have any major favorite activities (unless you want to count school, reading or watching television, none of which make for a particularly interesting or catchy theme), so I'm trying to think generic. Like maybe a color theme.

Like maybe pink & orange, or turquoise & orange, or turquoise & pink, or, heck, turquoise & anything! I have two boards on Pinterest dedicated to some of these color combinations: Blue & Orange and Pink & Orange, and then there's the ever-mind-shattering inspiration of Oilily. (So now you've seen 3 of my 5 Pinterest boards, all needing a lot of attention...) My mom has suggested a field of flowers theme, or butterflies, both of which would be excellent. I'm thinking maybe flowers and stripes in turquoise & orange (I just love pattern-mixing, thanks to my Oilily past...). We'll do the party at the local playground again - a definite benefit of having a late spring/summer birthday!

Grabbed this image off the web because it makes me drool...

So, if any of you have any great (read: EASY and CHEAP) craft ideas that I can pull together quickly and on a dime, please let me know. If you find anything great (read: EASY and CHEAP) on Pinterest that you think would work (I'm only just now discovering what joys that amazing site holds), please send me the links!!

Sweet, Sweet Sunday

2012-01-30T09:29:00.000-05:00

It was a sweet, sweet Sunday.

The day got off to a lazy start. Breakfast at the bagel store (a favorite, as the owners are completely and rightfully smitten with Samantha), and some Wii bowling lessons from Daddy.

Next, a visit from Gramma and Grampa and a quick piano lesson.

It's funny how she's able to keep a tune so much better when she's playing the notes while singing (no, as much as I'd love it, she's not a prodigy - Gramma pointed to each note first).

Samantha talks incessantly about Middle C.

I told my girl that after Gramma and Grampa left, maybe we'd go outside. "Outside? To play? Mommy, Daddy and Sammi?" "Yes, baby." "To fly a kite?"

You know what? I hadn't thought about it, but that's a fantastic idea!

Too bad the gusty, inconsistent wind didn't have the same aspirations.

"Come on! Let's go to the playground!"

Another fantastic idea.

Cold, but fantastic.

"Hi! Welcome to McDonald's! May I take your order?"

Coincidental run-ins with good friends are the best.

Cold, windy, unscheduled playdates followed by steaming hot chocolate and mint marshmallows are even better.

By the way, white shirt + hot chocolate = art smock. :-)

Oops - Jammies Fail

2012-01-27T08:19:00.000-05:00

We get a lot of paperwork home from Samantha's school. I mean, save-a-forest kind of paperwork. I think if we were to reconstitute all of the pulp in all that paper, fluff it up and mold it back into a tree-shape, I'm pretty sure we could solve the global warming crisis.

Certain things you can't avoid, like Sammi's art projects and her academic work - how proud we are seeing her writing worksheets, each letter carefully created within the dotted guide lines, each curve, though shaky, forming a word. I'm more than happy to get those. But some stuff, well, let's just say I'd probably rather get it in an e-mail (or 50) and leave it up to me to decide if it should be printed out or not. I'm willing to bet we could fund the cost of building a new school with the amount of paper the County could eliminate... I do understand, though, that having a visual reminder in people's hands is often the best way to make a point or to spur action. Just not for me.

Am I making excuses for this morning? Nah, but I just thought I'd mention that...

Today was Pajama Day at school. To be honest, I saw it on the paper schedule that had come home at the beginning of the month, and I remember thinking, Oh, cool! I won't forget it this time! (as I have on all previous Pajama Days). Then the schedule worked its way to the very bottom of the mountain of papers and forms sitting on the kitchen counter (yes, I should be weeding through this more often...), and, well, I forgot.

So Samantha was one of only two children in her class this morning that wasn't in their pajamas. Not a big deal back in preschool, but this time the kids noticed. And not like it's a bad thing, but I do want to try to keep her as involved as possible, running as much with the others as I can, and standing out in ways that I'm actually able to prevent makes me feel kinda bad. I don't mean to make a bigger deal of it than it is. I guess it hit me pretty hard this morning, though. She didn't mind, she wasn't at all self-conscious about it. I know that's what counts. And it's not like I couldn't have run back home and gotten her some jammies to wear, but let's just say this was a little bit of a wake-up call for me to try to be more organized, to try to pay better attention.

A jammies fail is certainly not the worst thing I could do. I'm going to let this be a little lesson to me, though.

Toy Boy

2012-01-26T08:14:00.001-05:00

A friend of Steve's gave us his Wii console and games. Pretty darn exciting for us, as we have wanted one for some time, and in addition to hours and hours of family entertainment, it could provide a fun, in-home way to burn calories for all 3 of us during these long winter hibernatory months of blubber-building. (Okay, I'm speaking for myself only here, but it makes me feel better to include the others...)

Steve (to Samantha, on his way out the door yesterday to pick the device up from his friend): I'm going out now to go get a new toy for you!

Samantha: Boy?

Steve: Did you just say, "boy?"

Samantha: Yes.

Steve looked at her quizically, unsure of exactly what point she was trying to make.

Samantha: I *like* boys!

Steve (honestly in need of just a bit more clarification here...): Boys, or "toys?"

Samantha: Boys. And girls!

A brief pause, then she quickly added: But I *like* boys.

Steve: You're too young...maybe in 20 years.

Sammi giggled then ran off to play.

Um...let's just stick to the Wii here, shall we?

(Psssst...what are your favorite "active" Wii games for kids?)

Wednesday Whimsy: Photo Flashback: The First 4 Months

2012-01-25T08:17:00.001-05:00

I look back at old photos, and have such a hard time being able to visualize the squidgy little newborn as the same Samantha we know today. Her personality certainly hasn't changed much - feisty and willful then, feisty and willful now, only with the added feature of being able to use words and much more capable actions to show us how feisty and willful she is. And boy, does she.

We'd gotten a new digital point-and-shoot in the weeks before Samantha was born, a step up from the digital dinosaur we'd been using. Somehow I managed to throw just about every photographic convention I'd ever learned from my father and from my classes at the University out the window in favor of the old, standard snapshots to capture the squirmy little being that had just joined and had already enhanced our lives.

One month old. I was too scared to bathe her, up until she was big enough to sit on her own in her bathtub. That, and clipping her nails, were exclusively Steve's jobs. I didn't even want to change her clothes in the first few days she was home, leaving that to him or anyone else who came around to visit. How on earth could you make those delicate little arms go into sleeves? Would this delicate little china doll break if I tried? Better to pass that massive responsibility on...

At 2 1/2 months old. Wow, where did that red hair go??

At 4 1/2 months, on O2 at home after OHS. It was pretty torturous, and I can only say how grateful we are that it only lasted a few weeks before her sats rose enough to kiss that noisy monstrosity of a machine goodbye.

Bittersweet and Twisted

2012-01-24T08:02:00.002-05:00

Twist, twist, twist...

"Hands down, honey."

...twist, twist, twist...

"Baby, please put your hand down..."

...twist, twist, twist...

"Samantha! Stop twisting your hair..."

And so it goes, on and on and on.

It's a fairly recent phenomenon, within the last few months. She began to pull at the fine hairs, the straggly bits framing her face that had come loose from her braid. Not pulling hard, but absently tugging, breaking bits off and ensuring that it didn't continue to grow to its full length. In recent days (or has it been weeks?) she's been twisting it, her hands fluttering up, rubbing it into a ball, stopping only when re-directed with a distraction, or the shake of a parental head.

Yesterday it hit its worst point, a point of no return, a point that now requires scissors to remove the tangled, matted dreadlock that resulted from her incessant mauling. She knows she shouldn't do it, and even says as much, but she can't help herself. This morning I bolted her hair down with a row of hair clips, and gave her teachers instruction to re-direct if they see her doing it.

Sensory? I'm sure it is. But why now? Why this? We'll mention it to her OT this week and see what he says, but in the meantime, do/did any of your children ever do this? What did you do about it? How are they doing now? How long did it last?

6 Degrees

2012-01-23T12:00:00.000-05:00

LinkedIn is like the game, 6 Degrees of Separation. You can see all of your own connections, and how many connections you share with each person, as well as how you are attached to people you may not yet be connected with. Make sense? Like, for example, if I look up one of my old colleagues, it'll show me that I'm attached to them through one or two other people, going back 4 connections. Or something. I'm still figuring it all out.

But the alluring part is this - you never know how you may be connected to someone. I recently looked up a non-work-related connection on LinkedIn who just happened to be connected to one of my work associates. Completely random.

Now that's not to say that they're best buds or anything, or if they even know each other personally, but somehow they've got that connection.

Facebook is much the same way, although not quite so technically geared towards tracking connections. But, of course, you can still see when you share "friends" with someone, and who they are. I love that part of Facebook, but in all honesty, since the majority of my "friends" there are in the Ds community already, and the vast minority are non-Ds-related, it's super-rare that those two worlds cross paths in any way.

A couple of days ago, I discovered that a non-Ds-related friend (someone I knew in London 20 years ago) started posting some Ds awareness articles on his wall. I thought that was super-cool. He knows about Samantha, and has donated to our Buddy Walk team as well. One of his "friends" commented that they had a young daughter with Ds, and they thanked him for posting that. I noticed that they also shared 2 other people from the Ds community with me, and I've now added that friend to my friends list, too.

Not quite sure what my point is here, except that I think it's pretty awesome to watch worlds collide, to see paths cross in the most tenuous and random of ways. To help open people's minds and spread awareness across those far-reaching networks of virtual friendship, through communities that have not yet been touched by our beautiful children.

Happy, Happy Friday (or, More Reasons to Love Shutterfly)

2012-01-20T09:31:00.000-05:00

Friday! Whew! I thought it would never get here. Traditionally, this is one of my absolute busiest weeks at work every year, and whether in the office or at home, it's been difficult to think of much else. Today's a bit of a "coming down" day and I can breathe again (somewhat), so I'm tapping this out in the 10 minutes I have to scarf down my Frosted Flakes before hightailing it to work.

I'm going to sing Shutterfly's praises yet again today, as earlier this week they sent me an e-mail coupon code for $20 off any purchase of $20 or more, with an expiration date of Wednesday at midnight. Now this is certainly nothing to sniff at. $20 off anything at Shutterfly? That's pretty darned exciting!

Well, especially if you have time to create something before the deadline.

Which I didn't.

But I wasn't going to let that one get away. Nevermind that I had absolutely nothing in mind to make...

Except...

The Samantha the Princess book I made for Sammi!

So, with 3 hours remaining until midnight on Wednesday, I got to work. It's not perfect, it's definitely not terribly interesting and I didn't have enough time or energy to take full advantage of Shutterfly's great book features (LOL - the first time I typed that I accidentally wrote "feathers...") and to add any of the frills or even to add any additional words, but I quickly stuck some extra pictures in and filled out the 20 page minimum needed to print (run-on sentence, anyone?).

And, since I needed to have a $20 minimum purchase, I ordered two. I know who the second copy is going to, but can't talk about it here yet. Let's just say it's not going to family (sorry, Mom - I'll make you a copy at some point if you want it!).

At the very last second, as I was about to make the final purchase, the coupon code didn't work. *sigh* Why does this always happen?? But after a quick e-mail to Shutterfly customer service, I got a response first thing in the morning telling me that the code was now loaded into my account and I could go ahead and use it that day.

Have I ever mentioned before how much I love Shutterfly??

Click here to view this photo book larger

Shutterfly offers exclusive layouts and designs so you can make your book just the way you want.

Wordless Wednesday: Photo Flashback (May 2009)

2012-01-18T08:11:00.000-05:00

Sorry - this is an absolutely craaaaazy week, and I have barely enough time to think, let alone write any actual blog posts (well, not at this point, anyway), so I'm substituting some sweet flashback pics of Sammi from early May 2009, when she was just a few weeks shy of turning 3.

Enjoy!

Once Upon a Time...

2012-01-16T11:28:00.004-05:00

I thought that motherhood would automatically grant me the superpowers to fabricate dazzling tales of magic and intrigue, with my words weave the rainbow-hued landscapes of childhood, permit me to sing an entire catalog of earthy folk tunes from memory, in the voice of an angel - you kow, all those things that make such beautiful memories for children to carry with them from babyhood, on to their own next generation of offspring. Sadly, I have none of that, and certainly no songs past my croaking of the usual standards, ABC or Twinkle Twinkle, and absolutely no imagination when it comes to telling stories.

None, I'm embarrassed to say. And I'm really putting myself out on the line here by sharing with you the one, single, uber-pathetic story I have managed to create on my own, to present to Samantha, time and time again, because I have absolutely no idea what else to say. Thankfully, she hasn't objected...yet. And thankfully she's usually much happier to have me read a book to her every night at bedtime, effectively letting me off the hook.

For Sammi's and my next Learning Program session next weekend, my homework from our last meeting was to create a reading book personalized for Samantha, something she could read and enjoy over and over again, that would likely mean more and connect better to her than other books. Not like she hasn't connected to a gazillion other books already, but it is nice to have something special, made for her. I haven't laminated or bound the pages yet, but will take care of that this week at FedEx/Kinko's.

I actually had a bit of fun making it, as I enlisted Samantha's help ahead of time. I told her I was making a book for her to read, and I needed to take some photos of her reading a book, playing a game and having a tea party. She said, "Sure!" and was incredibly cooperative, so I got the shots for pages 2, 3 and 4 with her assistance. These kinds of books really are beneficial when teaching your child to read - these are words and concepts that they relate to. Some of the words in this story are still unfamiliar to Samantha, but for the most part, she has taken a good stab at it and I've helped her out with beautiful, things, once, parties, and happily. But you can bet, with a few more reads, she'll have them down pat, and you can bet that if they turn up in another one of her books, they will no longer be unfamiliar to her.

And now, for la piece de resistance, as my ears turn pink and I cower under the covers in horror at my definitive lack of creativity...

The Joys of Strep (No, Really!)

2012-01-13T10:11:00.001-05:00

So maybe the word Joys is a little bit misplaced here, in describing that vile, oh-so-contagious illness (muy contagioso, as I have learned to say to Sammi's aide in times of need - hey, if I'm going to learn any phrase in Spanish, I guess it may as well be that one...).

But in all honesty, there's a lot to be said for it. As wretched (ooh, how I love that word!) as one feels in the throes of fever, delirium and the miserable sensation of swallowing large, pointy objects, the quick turnaround to recovery is all that much more sweet.

Sammi has strep. After a perfectly good day at school on Wednesday, followed by two hour-long therapy sessions, she was still bouncy and full of energy. By 6pm, when Daddy asked her what she wanted for dinner, she burst into tears. Usually a good indicator that something's up... Samantha, for all of her playing-doctor, telling us exactly what hurts during the role-play, being the model patient, is, in all reality, a pretty horrible patient. She tells us nothing when something's really wrong. She shuts down, puts her hands behind her back, looks at her feet, and responds to all questions, "Nothing."

"Does your throat hurt?" "Nothing."

"Does your tummy hurt?" "Nothing."

"Does your head hurt?" "Nothing."

You get the picture.

However, Sammi was sporting a pretty hot fever. Within an hour, she was at the pediatrician for a check-up. Strep hadn't even crossed our minds, and the doctor, after looking down her throat and seeing nothing, thankfully decided to do a strep test anyway.

Ohhh, how I hate to put her through that.

But the test was positive.

Yay!! Hooray for strep!!

This meant a few things - a) we knew what it was and didn't have to worry about some unknown illness, b) we could swing by the CVS drive-through to get antibiotics right then and there and get her started immediately, c) she'd be feeling better by morning, d) she could go back to school on Friday.

See what I mean? Nothing to it. (Oh, and I won't mention how ticked-off I was at the CVS drive-through person who told me to park across from the drive-through window to wait and she'd motion to me in 10-15 min. when the meds were ready, who then proceeded to either go to dinner or leave for the night and neglected to tell her co-workers that I was out there waiting, in the rain, with a sick, crying child, how after waiting 25 minutes, happy that Samantha had fallen asleep, and entertained by Facebook, I finally went back into the drive through lane to see if they were ready and they were, but who knew for how long??)

And just to show how not wretched she felt in the morning, and to tell me how right I was with all of my whispered promises that she'd feel better in the morning, (all while force-feeding her medicine through a syringe as she screamed and flailed her arms), she woke up and announced, loudly, "Mommy! I'm awake and I feel better!!"

Whew.

Wordless Wednesday: Grampa

2012-01-11T08:04:00.001-05:00

What's in a (Post) Name?

2012-01-10T08:06:00.001-05:00

Blog hits from Google searches. That's what's in a post name.

I've learned that if I want to make some sort of impact outside of our community, want to get people visiting who may or may not have a connection to us, I can craft some carefully-placed words in my post titles.

For those of you who blog and check your analytics every day, you may find some pretty funny Google keywords that have driven people to your blog. Sometimes those keywords are a bit disturbing, unfortunately, but you can usually recall a post that you'd written that may have contained those very words, albeit in a completely different context altogether. And while these words are sometimes derived from content within the actual blog post, I think the stronger, more powerful, more likely magnets to draw and attract those searches to you are your titles.

Back before Samantha's birthday party in May, I wrote a post about how the theme was Olivia the pig, and that I was doing a lot of the crafts for the party myself. I thought I had some cute ideas, and hoped that others looking for birthday party theme/craft options might stumble across that post. I titled it, Chasing the Crafty DIY Birthday Party. After the party, I hoped that, like myself when I was trying to create the party, people would find my blog and see pics of the finished product, so I titled the post of party pics, Sammi's Olivia Party Picture Overload. When she got a Pinkalicious bike for her birthday, an item that I think is really cool, I wanted to share that with the world of Pinkalicious fans out there who may do web searches for a Pinkalicious bike, so I titled that post, The New Bike: Pinkalicious Rides Again.

I'm happy to report that I have gotten numerous hits on my blog from just such searches. And I hope those posts helped some people, as others helped me when I did some very similar keyword searches.

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When Sequenom's prenatal test, MaterniT21, came on the market, I frantically wrote a post to express my fear of what it would mean for my daughter's future, and the futures of so many like her, my fear of losing such an amazing and valuable population in the world. I titled that post, MaterniT21.

Get where I'm going here?

When I start to write something I feel passionate about, I get a bit of a head rush, find it a little hard to breathe, like I've had one-too-many cups of coffee. I feel that way now, like I can't let this go until I finish, like I may be making a difference in some way, no matter how small or insignificant...

Yesterday I got a hit from a search for MaterniT21 availability Colorado.

Don't get me wrong, I've gotten visits resulting from searches for MaterniT21 before, after I wrote that initial post, but this one kind of hit home for some reason. This time it wasn't just an anonymous, possibly innocuous hit from someone conceivably just looking for general information about the test, from someone who may even be from our Ds family wanting to know more. This time, it felt directed by need, by someone actually looking for the test where they live, most likely so they can have it administered.

Did they stick around to actually read my post? I don't know. Did they feel even a little bit of intrigue? Did they learn something? Did they see how the happy parent of a child with Down syndrome feels, and sees her amazing life? Did they see how beautiful our enhanced children are?

Did they change their minds about what to do in the event of a positive test result?

I know it's all wishful thinking. Wishful that maybe, just maybe, the titles of our posts, placed with such care and forethought, might change a mind. Or a hundred.

Keep that in mind as you write your next blog post.

Day at the Museum

2012-01-09T09:55:00.000-05:00

Anyone who's been to DC likely knows this guy...

...and this guy...

...although maybe not this little lady (well, not quite yet, anyway).

Although her bravery and her intrepid spirit certainly makes her the person to know! Who else could face down (uh, hand down?) an aligator and come out unscathed? (Don't worry, no "Do Not Touch" rules were broken - this big guy was in the museum's Discovery Room.)

Next educational Sammi purchase - a magnifying glass! Wow, she loved that.

What's the point in these kinds of video displays when you can't even hear the audio? Sammi looks like she's learning African proverbs and elephant tales, but she's really just having fun pushing the buttons to change the movie...

January 7th? Eh, who needs a jacket?

After nearly 6 or 7 hours out and about, my over-stimulated, slightly rambunctious child and I made a quick stop on our way home to visit the lovely (and STRONG!) Miss Ellie for some baby cuddles and camera lens drooling (my drool, not Ellie's). Needless to say, Princess was Out. Cold. in the car after that. Funny how that works...

Friday Foto Flashback (September 2009)

2012-01-06T08:12:00.001-05:00

I know that while the flashback photos are definitely appreciated, including by myself as I enjoy the trip down memory lane, they are still kind of cheating, as I don't have the time to actually write something that resembles anything remotely interesting. So today I leave you with some pictures from September 2009, when Samantha was 3 years and 3 months old. Oh, goodness, that 3rd one down just kills me...what a princess...

WOW, She IS Super!!

2012-01-05T10:00:00.002-05:00

Who's super? America's Supernanny!!

I know this has been all over Facebook over the last few days, but I, myself, have not been all over Facebook much recently. Oh, I know I update my status from time to time, but mostly that's from my phone, rather than from the simple comfort of my computer. Thus, my ability to surf is cut back a bit. I have said before that I'm a selfish Facebooker, and there is no small amount of guilt attached to that when people are so kind to comment on my posts and compliment my photos, and I feel like I miss so much of what everyone else is doing.

Wait...this post was not originally supposed to be about Facebook...I guess my guilty conscience needed a bit of purging, and yes, I feel better now. Whew!

Back to the topic...America's Supernanny...

I am no longer a person who feels the absolute burning need to watch/read everything that comes along that involves someone with Down syndrome. If you are one of those people, it's not a bad thing, and I have definitely been there myself. Actually, at that time, I never thought there'd come a time that I'd ever say that I wasn't one anymore! I think our lives have become settled and routine enough, with Down syndrome becoming such a back-seat topic, that I'm kind of at a take-it-or-leave-it place. Doesn't mean I'm not interested, though, because I am. I'm just not craving as much information as I was.

When I heard that the new series, America's Supernanny, was going to feature an episode involving a family with a child with Down syndrome, a child whose behaviors were causing a rift between husband and wife, parents and children, I was a little bit ambivalent about watching it. I set the DVR to record it, just in case, and Steve expressed some concerns that the show may make the child with Ds out to be a problem, rather than addressing the parents' inabilities to parent the child - pretty much the same page I was on in my reticence to watch.

I watched it on my own lastnight, cautious, and not expecting much.

And I was floored.

This woman, Deborah Tillman, seriously knows what she's doing. Apparently she has a degree in Special Education, and to see her in action with the child and with the parents was truly amazing. No condescension towards the boy, plenty of scolding of the parents for setting low expectations for him, and loads of positive reinforcement and tools in place to help the parents learn how to parent him effectively while modifying negative behaviors and encouraging the positive ones.

She also gave a very concise lesson to the audience about what Down syndrome is, and what it means for the 1-in-700 children born with it. She explained it pretty much the way any of us would explain it, and I applauded her.

So positive, so mind-changing for anyone watching, such an excellent step in the right direction.

Ms. Tillman is from this area, and has 3 childcare centers that she owns and operates. It's interesting, if you look at the website for the centers, it gives her name as one of the two people to contact for information. Grounded, available, knowledgeable. Just the kind of person we'd want overseeing our children's education!

Okay, back to not reading Facebook...

The Ruler of the Rules

2012-01-04T08:08:00.001-05:00

Or, I could have alternately titled this, "Miss Bossy-Pants." Seriously, this child is out of control.

In a good way.

I think...

Samantha is a real stickler for rules. Not sure if this is a characteristic of the extra 21st chromosome, a kid-thing, a genetic reflection of her goody-two-shoes mommy, or a sign that we've done our jobs right as parents, but tell her the right way to do something, especially when it comes to safety, and she takes it and runs with it.
Nobody (that's Nobody) may ride in our car without a seatbelt. While that's a rule I, myself, am only too happy to enforce, I don't actually have to, as my little guard dog, Samantha, has a 6th sense about it. Let the car roll forward two feet with someone else in the back seat who hasn't yet fastened their seatbelt, and trust me, they get an earful from her. Loud. And. Clear.

*(Of course I will only mention in passing the night a few weeks ago, when we went to the Festival of Lights at a local park and allowed her the oh-so-naughty-and-dangerous luxury of sitting on my lap in the front seat...she really had the crap view for it in the back, the stadium nose-bleed equivalent, watching the beautifully-lit decorations at 15 mph either over our giant heads or through tinted glass... I was surprised that Miss Bossy-Pants-Goody-Two-Shoes didn't protest conflicting moral standards, didn't show any kind of internal struggle with the battle between right and wrong, but we made it very clear that this was a one-time-deal...)*

Manners are another sticking point for her. She says please when she wants something, thank you when someone gives her something, helps her or compliments her, excuse me when she belches (an increasingly frequent occurrence these days) or barrels past someone...you get the picture.

On Sammi's last day of school before the Winter Break her class had a party, to which the parents were invited. As I had to work that day, Steve attended with her. A little girl from her class came over to the two of them and handed Steve a bottle to help her open. After opening it, he handed it back. Samantha watched the proceedings like a hawk, waited a few seconds after the bottle had been returned, then scolded the child: "Say thank you to Daddy for the bottle." Sammi spoke clearly and concisely, but the little girl, obviously not quite as good at the manners thing just yet, just looked at her. Sammi repeated herself with a little more emphasis: "Say *thank you* to Daddy for the bottle!" It was clear to Steve that she was going to be like a dog with a bone if he didn't intervene, so he said, "She did, honey. It's okay."

And Samantha was satisfied with that.

It's just so hard not to laugh during these moments. Samantha was absolutely right, and we have to be careful to reinforce and not to minimize the moments. But we certainly laugh in the retelling, and look forward to passing the stories of her childhood down to her when she's older and can laugh with us.

I can deal with her instructing me to hold on to the railing as we go downstairs ("so you can be safe"), the need for her to hold on to my shoulders when I'm on the toilet in a public restroom ("don't fall in, Mommy!" - this one thankfully passed once she was big enough to sit on the potty unassisted...), the demand that we respond appropriately ("Say excuse me, Daddy..." - sorry, Steve - just splitting the examples between the two of us...LOL), the frantic plea to put dirty tissues where they belong ("no, Mommy, not in the toilet, in the *trash!*"), and all the other little Mini-Mommy/Daddy things she's observed and repeated so carefully and appropriately...

I guess a little bit of OCD never hurt anyone.

And now, just because...moments from spring 2008, 2 years old...

Looking at this photo is like looking at myself at that age...the resemblance is startling. Exploring her world, lost in the moment...

A true child of summer, a ray of sunshine, finding joy in her universe, creating joy in ours.

What Wonders Await?

2012-01-03T08:09:00.002-05:00

I know I'm a few days late, but Welcome, 2012! Oh, what wonders wait in store for us this year? How could you, with your sleek-sounding name that just trips off the tongue, you with your perfect "2" bookmarks on each end, possibly top those amazing moments and milestones of your predecessor, 2011?

Tell ya what...you'd better try your darndest. I have very high expectations here based on 2011's stellar performance. And don't pull any of that end-of-the-world crap. I'm not buyin' it. Let's just re-set that Mayan calendar, shall we?

And not to sweep 2011 completely under the rug, I'd like to pay tribute to a year that surpassed all we could have hoped for, by leaps and bounds, a year of the joys of childhood, the maturity into a young lady (Samantha, not me...), the end of years of searching for lost family, the making of new friends, and so, so, so much more.

In the words of the perfectly-coiffed, impeccibly-dressed, gleaming-toothed, incredibly boooooring Steve Jones (host of the X-Factor, if you didn't know...), "And now, the results, in NO particular order..."

1. Steve's long search comes to an end (or has it?), when he finds a first cousin and two siblings for whom he'd been looking for many, many years.

2. Samantha graduates preschool and begins Kindergarten, in circumstances we could only describe as perfect. Perfect placement, perfect teachers. After so much fear and trepidation, I just can't say enough about the last 4 months!!

3. Samantha starts reading!! We'd been working on it bit by bit for a year, starting in 2010, but 3 weeks into Kindergarten, she proved she's her mother's daughter by bringing home a library book, sitting down with it, and reading it cover to cover.

4. Samantha loses two teeth! Right on time. Mommy and Daddy weren't really ready for that, but Child took it all right in stride!

5. Samantha turns 5. Oh, that was a tough one...my little baby's growing up!!!

6. Samantha decides that she's going to take being a big girl very seriously, and, two weeks before her birthday, decides that pull-ups at night are a thing of the past. Hooray!

7. We all take a real vacation including a long road trip south and the beach. Samantha was an angel the whole time. Gotta do that again soon...

8. Steve and I celebrate our 20th anniversary. Wow!

9. We see the removal of Sammi's bedrail and the child-proof doorknob on her bedroom door, allowing her a whole new freedom, which she respects beautifully. Did we really expect different?

10. Samantha's fine motor skills really take off - she writes her name on just about everything (future tagger, perhaps? I once dated a guy in Germany when I was 15 whose name was scrawled on nearly every flat surface of the city we in which we lived - he carried his markers around with him...), and shocked me two weeks ago by buttoning up her cardigan all. by. herself.

See, I warned you they were in no particular order! But they all made 2011 a really exciting, special and important year for us. I feel like I've learned as much as Samantha in some respects, and recognize that minds stay young and healthy by being open to continually learning new things. Maybe next year I'll be 23 again, right??

Hope you all have a very happy and healthy New Year!

Samantha with the new toy kangaroo sent to her by a new friend/lost family member in Australia

Doodle Doodle Doodle

2011-12-29T09:24:00.004-05:00

Sammi (handing me her mini Doodle Pro this morning): Look, Mommy!

Me (pointing to the figure on the left): Wow, that's fantastic! What's this picture?

Sammi: A house.

Me (impressed): That's a wonderful house! What's this? (pointing to the figure on the right, thinking it may be some sort of alien ant-eater tree)

Sammi: A truck.

Me (perplexed): A truck? Whose truck? (I don't know anyone with a truck...should I be concerned?)

Sammi: The fireman!

Me (definitely wondering if I should be concerned, making a quick mental note about where all the fire extinguishers and the escape ladder are kept in the house): Oh, so it's a fire truck?

Sammi: Yep!

Me (still a bit perplexed, but ooookay, she's 5...): And what's this, along the bottom of the picture?

Sammi: It's grass.

I love, love, love her artwork, and watching it progress from week to week. If you missed it, please take a look back at this post from 3 days ago for her letter to Santa...

The Doctor Is IN

2011-12-28T08:28:00.001-05:00

Christmas morning, and Gramma and Grampa have brought the present to overshadow all presents.

Personally, I think she's a shoe-in for a permanent spot on General Hospital.

The doctor's kit to overshadow all doctor's kits... (and a personalized tag on her new doctor's shirt, designating her officially as Dr. Sammi).

As if we didn't already hear the announcement, "Mommy, Daddy, I'm siiiiick!" often enough in an attempt to engage us in playing doctor, it's intensified a thousand-fold since Christmas. But with this new, fancy-schmancy kit, so much more sophisticated than her previous two, she's more easily re-directed to nurse her dolls back to health and leave us to our own business.

It includes swabs, cotton balls, prescription pad, appointment cards, clipboard, eye chart, bone chart, and X-ray, and a multitude of little silver instruments. You know, just in case things get serious.

Poor bear! I walked into Sammi's room to find him in this battered, post-Christmas state. Guess he didn't see that truck coming...or was it a sleigh?

Then Daddy got hold of him... (remember SNL's Mister Bill, anyone?)

Oh, noooooooooo!!!!!!!!

All better!

Coming Down

2011-12-27T08:24:00.001-05:00

The whimpered end of Christmas has come upon us yet again, content to sit idly for another 12 months, allowing us needed and welcomed respite. Keeping our tree up until January 5th allows us to bask in the afterglow just a little bit longer, giving us the time needed to be just a little bit sick of the twinkling lights and garland-swaddled railings, letting the natural course of our sentiment come full-circle, naturally allowing us to remove it all without a shred of guilt.

Christmas was wonderful, magical, sweet and exhausting, all at the same time. Nearly strangers to entertaining at home, we hosted an unprecedented two gatherings in as many days, having our next-door-neighbors over on Christmas Eve, and my parents over on Christmas Day, thoroughly enjoying both. Steve cooked for each event (oh, goodness, do any of you need any food?? I'm still completely stuffed and the fridge is still full!) and Sammi, while tired and a bit overloaded by all the activity, was her usual charming (and very busy) self.

Below is the first installment of Christmas photo overload. In the first photo, Sammi sports her pajamas, enhanced by the gorgeous frilled skirt sent by Uncle John and Aunt Cynthia. I eventually took the jammies off of her, but made sure the skirt stayed - just beautiful!

Sammi and her prized gift (well, prized at least until Gramma and Grampa showed up and brought the gift-to-end-all-gifts... LOL - stay tuned for my next post...), a cash register, something she's been wanting for some time now. Yes, yes, yes, I swore long ago that we'd never have anything with the word Barbie attached to it ~~taint~~ enter our household, but with young daughters comes great flexibility of former riders of non-conformist high horses. Yes, that would be me... And really, this little thing is pretty darn cool (notice I don't mention the 5 Barbie dolls, Barbie bike, Barbie laptop computer, Barbie movie and Barbie lifeguard chair that have already sneakily tiptoed into our lives, completely circumnavigating our watchful eyes...).

Partial aftermath. Hurricane Sammi, on the quest for actual toys, stymied by board games and books, tore through present after present, announcing after each, "A different present, please." We corrected her by suggesting she ask for "another" present, but the look on her face spoke volumes for the fact that she knew exactly what she was asking for in the first place, thankyouverymuch. Of course we gave her the cash register to open last, which seemed to be the long-awaited answer to her hopes and dreams, shattered repeatedly over the previous hour...

I just love this little ornament, painstakingly crafted by our neighbor. Absolutely gorgeous, and the teeny, tiny little details are impossible to go unnoticed. This will be treasured for a long time to come.

Nana called from England to wish us a Happy Christmas. Samantha was so excited to speak to her and tell her she'd just gotten a cash register from Santa! Nana, speaking English English, had no idea what Sammi was talking about until Daddy got back on the phone and explained Sammi had just received a till... See, we forget that there's still a language barrier between English speaking countries, even though we are reminded and given options for translation online by both Facebook and Fedex...

Upon hearing that our next door neighbor's cat, Seamus, has a penchant for dressing up in, uh, clothing, Samantha just had to go and witness his transformation into Christmas elf for herself. This was her only brief sojourn into the outside world on Christmas Day - notice what beautiful weather we had, too! For privacy purposes, I will refrain from posting photos of the cat. But let's just say, he looked very comfortable and confident in his outfit...

Beef Wellington - that's what's for dinner (along with Yorkshire puddings, mashed potatoes, roasted potatoes, asparagus soup, and braised leeks and carrots, finished off by a gorgeous chocolate cake baked by my mother)! YUM - great job, Steve!!!!

And so it's back to work for me, another week off for the Princess, and as we look ahead to the next 12 months filled with activities, holidays, and other joyous events that go so quickly, we are again reminded of the swift passage of time, more wrinkles cropping up to taunt us with much of the same.

How do you decompress and come back down to earth after the Christmas hubub?

By the way, for those of you who may not have watched it last night or who may not have read about it already on someone else's blog, please watch this clip from lastnight's ABC News about Reece's Rainbow and the Cox Family's journey to adopt little Kareen (now Mia) from the Ukraine. It's an important story about the plight of children with Down syndrome (and other disabilities) in eastern European orphanages...

Love Letters

2011-12-26T17:52:00.001-05:00

In a fit of frustration that an over-tired Samantha wanted nothing more than to watch more TV on Friday afternoon (after already indulging in the thoroughly-addictive, mind-numbing pastime for more than an hour already), I attempted a little productive re-direction. Samantha jumped at the chance to write a letter to Santa to leave with his snack of chocolate milk (an annual Bates family tradition, thanks to Olivia), and cookies on the mantel.

I have no idea what the second line says (Samantha just loves to write letters in general), but I'm willing to bet it's something akin to "Please leave the Biscuit and Olivia books under that tree over there..." The 3 figures on the left of the drawing are Mommy, Daddy and Sammi, and I am proud to announce that her figures now have feet! And mostly-proportionate heads...

Oh, be still my heart...

On Christmas morning Samantha was only too happy to read Santa's note back to her, out loud, with just a few prompts (for the words "milk" and "presents"). To be honest, I was really pretty relieved that I'd been able to write it (semi) legibly, with no spelling errors, on Christmas Eve after all the wine and eggnog liqueur I'd imbibed... Isn't it funny how Santa's handwriting looks so remarkably girly?

Merry Christmas to All...

2011-12-23T09:08:00.001-05:00

I'll likely not be posting again for a few days, so I wanted to take this brief opportunity to say Merry Christmas to all of you, and especially our family members across the globe (we've been very fortunate this year to have found new members of our family as well - glad some of you are reading this!).

I could probably write more, to talk about the amazing book I'm reading, or about the wonderful visit Samantha had at my office yesterday. I could talk about the way Sammi schooled a little girl in her class on manners. But I'll save all of that for later, after the promise and execution of this beautiful weekend-to-come.

Instead, I leave you with a few sweet holiday sentiments from my little elf.

Wild Child (A Flashback)

2011-12-21T10:25:00.000-05:00

I was scrolling through some of my old Flickr photos this morning, and came across this one, titled "Wild Child," taken on January 6, 2008:

The caption I'd written below it was as follows:

Okay, so it seems like we woke up the other day with a 2 year old, rather than a 19 month old. She's a willful (as we always knew she was), defiant (yikes!), temperental little girl now! When she doesn't want to do something, she hits, bites and scratches to get her point across. Of course, seconds later she's smiling and laughing again, so I have to remember not to take it personally. Tell that to the bloody scratch marks on my face, though. I know the behavior is totally typical of her age, if not a bit sooner than I'd expected it, and now's the time when we really need to teach her "no hitting (or scratching or biting, etc.)!" The two massive molars she's got coming through certainly add to the heightened emotions she's got right now, though.

Thought this may help those of you who are going through the behavioral stuff with your little ones right now. I read it with surprise, because it was just such a long, long, long time ago, and I can barely even remember her doing those things, especially not when I look into the sweet face of my 5 1/2 year old.

Kids who struggle with communication have to express themselves in one way or another. Thankfully, this stage of Samantha's life passed without any lasting physical or emotional scars (for any of us!). With the inventions of tablet computers and smart phones, children with communication issues have yet another way of making themselves heard. There are so many great possibilities out there these days! I hope that everyone can navigate these difficult waters with more and more ease.

Here's another shot, taken in December 2007, showing the strength of Samantha's will and the force of her personalilty - a tough girl in a furry, pink Abby Cadabby jacket:

The (Pit)Falls of Independence, and the Annual 'Do

2011-12-19T10:08:00.000-05:00

This morning, wearing hard-soled, flat-bottomed boots with her denim skirt, the epitome of a fashion-conscious schoolgirl, Samantha had 3 choices for our trip to school. Drive, take the short-cut (through our back yard), or take the bridge (down the block, over a footbridge, into the school yard). I gave her the choices because it was cold enough to drive, dry enough to take the short cut (wading through the muddy river that runs between the property lines is not fun), and we had enough time to walk to the bridge.

Surprisingly, Sammi eschewed the idea of driving right away. Which is most unusual these days, but I can kind of see why - she gets very upset at the notion of having to wait until the frost is off the windows before we can go. Ah, my sensitive girl, so tightly wound against the concept of change...

Samantha chose the bridge.

I warned her, as we made our approach, to hold my hand as we crossed. I could see that the synthetic materials used in the construction were coated in a thick layer of frost. I told her it would be slippery and I didn't want her to fall.

"It's not slippery - I do it by myself," she announced as she wrenched her hand out of mine. Two steps in, in a slo-mo moment befitting a cartoon cat, her legs spiraled into the air, and she landed on her bottom. Laughing, thankfully.

Needless to say, my independent one held my hand the rest of the way across.

Saturday morning was the annual DSANV holiday party. I look forward to this every year not because of the social aspect (who can be social when you're so distracted by the wonders seen and experienced by your own child?), but because of the pure joy on Sammi's face when she gets to see Santa.

Sammi just loves loving on the little ones...

She ran out of room writing her name on her snowman, so, on her own, decided to just use one "M." Good thinking, kiddo!

A book from Santa. The Cat in the Hat has become a new obsession, so this book about how you can't learn anything by reading with your eyes shut was perfect. So fitting, since she's becoming such an avid reader, even reading most of the words in this new book. I can't help but wonder, however, if this book may be construed as somewhat controversial in the vision-impaired community...

Absorbed in her new book.

Sunday brought a day of cookie-baking. Tried 3 recipes - one tried-and-true (spritz cookies for my cookie press, my prized posession this time of year!), one so-so (cranberry, orange, honey cookies - they actually sound better than they are - they're quite dry, but definitely good with a cup of tea or glass of milk), and one complete failure (the gingerbread dough was not right and made a swan dive into the bottom of the trash can - perhaps next year I'll take the advice of someone on Facebook and just buy a mix from the store). Cookies make good teacher's gifts. :-)

So...I have until tomorrow afternoon to figure out exactly what I can give Sammi's teachers that won't break the bank (she's got 4 teachers, the office staff, and her private therapists). Any non-time-consuming (seriously, I have no time), low-cost, still-somewhat-creative ideas you can share?

Friday Foto Flashbacks

2011-12-16T07:58:00.000-05:00

7/25/08

10/4/08

9/20/08

New OT Update

2011-12-15T07:00:00.002-05:00

Samanthahad her first private OT appointment yesterday with the therapist who also specializes in sensory issues. First of all, she adores him, so anyone that gets her all starry-eyed is a winner in our books, especially after all the therapists we've had in the past that she wouldn't give the time of day to. Those do not breed productive sessions.

He is now in the process of doing an evaluation to determine where her needs lie, and what his course of treatment will be. Initially, he's not thinking that her group-performance-shut-down issues are so much sensory, as they are situations in which she is taken out of her comfort zone, her routine. We have always prided ourselves in the way we've set Samantha's routines, starting with the day she was born. When babies are born, you're told, "get them into a routine ASAP." And I'm certainly not saying a single negative thing about that - wow, how wonderful routine has been for us! Samantha has always been a great sleeper, and thrives on knowing what to expect. But perhaps now we need to try to shake things up a bit, try to get her to respond to situations that are not expected, not part of the daily routine. Try to bring a bit of flexibility into her life. But it's not like we don't do things that are different, but I guess school, itself, is a routine, and things rarely change up much in the way things are done. For several hours a day, she knows pretty much exactly what to expect, right? Now...how to break those routines...? It may just be a case of allowing her to mature before she learns to work with different types of situations.

Of course, this is all just initial speculation based on an initial day of evaluation. He'll work with her more next week, and will learn more about my girl then. On the typical OT-type stuff, he was impressed with her grip, saying she works well with her right hand, but then switches to her left occasionally, possibly because she gets tired. Makes perfect sense. She's actually quite adept with using her left, although much more proficient with her right.

I'll keep updating as we gather more information. In the meantime, here's a photo flashback from Christmas Day, 2007, with my mother, when Sammi was a year-and-a-half old.

Oh What Fun!

2011-12-14T06:18:00.000-05:00

And so, as quickly as it blew in, that blasted cold is nearly gone now, bringing back the much-missed senses of sight, sound, taste and smell. All that remains is the cough I know I'll be living with for the next few weeks. And a very sore nose. I've been taking photos of all of the employees at work this week for our new photo ID badges, but one of the luxuries of being the person that's doing them is being able to put my own photo off until the very last minute, for the time when I may be having a better hair day, or a slightly less shiny nose.

And so! A couple of quick math equations for you:

Shiny nose = Rudolf = Santa's sleigh = Christmas...

...and, Good hair day = Samantha (of course!)...

...and, Samantha + Christmas + Shutterfly = our wonderful annual Christmas cards

(Okay, none of that made any sense...)

With the Free 50 offer I got from Shutterfly last month for blogging about their holiday cards, I am thrilled to now unveil the finished product, now that I've sent out the majority of them (with just a few stragglers for those whose addresses I am still scraping together). After 2 big-production ~~failures~~ attempts to get the perfect card photos, these festive beauties of the Princess were taken spur-of-the-moment, completely unplanned.

I think I learned a very valuable lesson that day.

Addled

2011-12-13T11:30:00.004-05:00

Most of my blog posts are written while I'm in the shower. Or driving my car. Or walking down the street. Or wherever I have absolutely no access to a computer whatsoever, let alone pen and paper. So, subsequently, most of my blog posts disappear into Never Never Land, because as a rule, I'll then go to sit down and tap it all out, and...pffft...nothing.

Maybe I'm just making excuses, but this week has been a particular font of nothingness, no matter where or when I try to come up with something. Most of that is from a lack of functional brain activity, due to the most outrageous, awful, snotty, wannacutmyheadofftomakeitstop COLD. Many thanks to my friend, Cathleen, who has offered up the services of her neurosurgeon husband who could save me a bit of trouble and cut my head off for me (with, may I add, the possibility of re-attaching it once the cold is gone, thankyouverymuch).

Steve's got it bad, too, and is a few hours behind me in his misery. Samantha seems to have skated through it earlier last week with a runny nose and a little bit of lethargy for a day or two. At least I'm hoping it was the same cold that we've got now, or else we'll be in for some serious nastiness from her in the next few days.

My poor, cold-addled brain couldn't come up with much more than this post for today. Nothing elaborate, no pictures, no recipe disasters, no Christmas joy, no nothin' except a little whine-fest by me.

I'm entitled, right?.

And when this is all over, and my clear and happy head is re-attached (can't wait until I can open my eyes properly again!), I'm hoping that my showers/walks/commutes will again be productive, and again result in some better blog posts going forward.

Maybe it's time for another Q&A?

Santa Claus is Coming to Town (on a Firetruck)...and Some Recipe Disasters

2011-12-12T10:51:00.001-05:00

It was a weekend of massive recipe failure. I don't get the chance to play domestic Mommy during the week at all, so once in a while I seek to re-create myself into that ficticious superhero of, well, domesticity on the weekends by attempting that oh-so-exciting task of cooking. I used to love to cook, but then Steve decided he was going to pick cooking up ~~to ensure I never poisoned him again~~ as a hobby, and really took off running with it. I mean, seriously, that guy can create mealtime masterpieces! And he loves to experiment. And he experiments very well (I guess I'd deluded myself that the fish stew concoction that I rolled out for dinner with company 19 years ago was good - I honestly thought those smiles and yummy sounds people were making were for real, but now I suspect they may have just been being polite...oh, how embarrassed I am now...).

But I still try my hand every now and then. This weekend, I decided to try a recipe for ricotta pancakes I pulled out of a magazing ad for Sorento products. I know the cottage cheese pancakes my father makes, that I've posted about before, are delicious, but I had this recipe right in front of me and thought I'd give it a go on Sunday morning. It was fantastic - if you happen to like glue. Or bland, tasteless bricks. Or if you enjoy making your own stones for skipping on the lake. Or building garden sheds.

Oh, it was foul.

So after making 3 or 4, I chucked the rest of the batter into the bin and dropped two frozen pancakes into the toaster oven so my child wouldn't starve.

Dinner on Sunday night was (nearly) equally disastrous. When a recipe for soup that serves 6 calls for 2 1/4 quarts of chicken stock, be suspicious... This recipe required some last-minute emergency modifications by the two of us (involving heavy cream and rice), and dang it, if it didn't turn out amazing!! As a matter of fact, I'm quite excited to have it leftover for lunch today at work.

So, back to a less-frustrating portion of the weekend, Samantha and I got to see Santa twice! First, on Saturday night, as he rode into town on the back of a firetruck, escorted by a variety of emergency vehicles, their lights blazing and sirens blaring. I thought for sure that he'd get down and come mingle with the children, but even though all he did was wave from his perch (accompanied by a slightly creepy snowman), it was no less exciting for Sammi, whose eyes lit up as she waved and shouted, "Hi, Santa! I love you, Santa!" like he was a rock star at a concert. Thankfully there was no shirt or knicker-waving from the under-8 crowd (or from the over-8 crowd, for that matter).

We got a glimpse (along with a smile and a wave) of Santa again in the mall on Sunday. I'm torn. I think the Mall Santas are awesome, with their real beards and twinkly eyes. I hope they get to make their whole annual paycheck in the weeks coming up to Christmas, as they certainly earn it. But I have a really hard time shelling out 25 bucks for a hit-or-miss photo op, netting me two 5x7s. Oh, yes, I could shell out the $45 or $55 or even more, and get the whole package, but sheesh, what if the picture sucks? I explained to Sammi that she couldn't give him a kiss or a hug on Sunday because he was really busy (not to mention, she was wearing sweats and an old shirt - definitely not Mall-Santa-picture-ready) and that we would see him next weekend (at our local DSA holiday party). Next weekend's Santa doesn't have the real beard or anything, but we love him - he's one of the local Ds dads who has tirelessly given up his opportunity to spend the party time socializing with his family for many years now, and I always treasure the photos we get with him. Of course, every year it gets harder and harder to pry my star-struck child off of his lap, but I suppose we're not alone in that. It just goes with the territory of having a 5 year old!

Waving at Santa as he arrived on the fire truck.

More waving.

Santa (with the creepy snowman behind him).

Oh, to be a Child at Christmas...

2011-12-09T07:09:00.001-05:00

More Therapy

2011-12-08T09:30:00.001-05:00

I'm all for throwing everything but the kitchen sink at my girl when it comes to therapies or programs to help move her development along in the right direction. Of course, there's that pesky little thing called Time that tends to get in the way - gone too quickly, each little available gap sucked away by other stuff, swallowed away into the abyss where it can never be recovered.

Time.

There's just not enough. But occasionally, an opportunity presents itself that's too good to pass up.

We'd been on a waiting list for OT at our therapy center where Sammi receives private PT and ST every week. We love her therapists there, and feel like they've really made some incredible progress with her. She loves to go there with her daddy, and it's not uncommon for them to run into other little friends from the Ds community there with their parents.

Last week we got the notice that one of the staff OTs had an opening, and the timing would work beautifully. (Man, I love getting off of wait lists!!)

We had never thought too seriously about Occupational Therapy, as it has been one of Samantha's strengths for some time now. The OT she has received from the school therapists over the last 2 1/2 years has been phenomenal, and I couldn't be more pleased with what Sammi's accomplished.  I never thought she'd be writing, composing messages (albeit very LARGE messages) on her own with the letters dictated to her, never thought she'd be writing her name on EVERYTHING, sans dictation.

However, this OT is also a Sensory OT, which means he works with children with Sensory Processing Disorder (SPD) and other sensory issues. I don't really know the extent of Samantha's sensory issues, but I suspect they're not terribly serious. However, there are triggers somewhere in her environment that cause her to shut down, to dig in her heels and withdraw from everyone (for short periods, thankfully!). We can't quite pinpoint those triggers, and we're excited about the opportunity to investigate deeper, with the help of an expert, to figure out the triggers and to help her learn to work around them. Like I said, they're not major, for which we feel very fortunate, and they're not constant, but they're enough that they impede certain classroom activities, preventing her from participating in groups, stopping her from enjoying an event.  As she gets older, these triggers will be more and more plentiful in the higher grades, and she's going to need to be able to cope with them.

Her current teachers, who adore her, feel a little bit sad when it comes to group work.  They know she knows the subject and material as well as the next child, but she just refuses to show the class. They truly want her to be able to show what she can do, to shine in front of her classmates. What's going to happen in show-and-tell? What about when she's asked to go to the front of the class to get her work from the teacher? Tell about her weekend? Receive an award?

Sammi's first appointment is next Wednesday.  It'll all begin with an evaluation, which I'm anxious to hear the results of. Then a plan of action, which I'm anxious to get in place. Then, hopefully, work towards progress.

Fingers crossed...

Notches in the Big-Girl Belt

2011-12-06T20:51:00.001-05:00

After a whole month has passed since 31 for 21, I still feel that little twinge of guilt at missing a day or two of blogging. My brain tells me it's downright silly to expect to be able to think of stuff to write (that may or may not be remotely interesting to a reader) every day, but my eyes see the repeated visits from some loyal readers popping on and popping off, periodically, throughout the day, and my heart feels that magnetic urge drawing me towards my keyboard, wanting to unload something, (anything!). And sometimes there's just...nothing.

But there's never truly nothing when it comes to Samantha. There's always something. Even those little things, so minor to most people, that mean so much to us, that cause such a stir of excitement that she's taking next steps in her development, in some way.

We can often be guilty of not pushing for certain aspects of her development, like we know she is perfectly capable of drinking from open cups, but we still use straw cups for the most part. It's easier, it's neater and less messy, and it makes her drink more fluids, more quickly, something bred from years of watching her suffer through bouts of constipation. No parent wants to see their child go through difficulties, so it's much easier to smooth the path for them, in any way possible. (C'mon, you've all been there...)

Two things changed this past weekend.

First, I finally decided to remove the bedrail from her twin bed. "Don't fall out of bed tonight, okay?" I said while tucking her in on Sunday night. "I won't," she replied, sounding just a little bit exasperated. I mean, sheesh, she's five! And a half! And you know what? She didn't fall out of bed. Nor did she the next night. And I just checked on her a minute ago, more than an hour after she went to bed, and she's lying just about as close to the wall as she can, at the farthest point from the edge. For a kid who always slept right up against the rail, she's showing that she knows her boundaries, and can sleep safely. This actually opens up a whole lot of future travel possibilities. We're always so paranoid about sleeping anywhere but home with her, without wishing desperately that we'd dragged the massive guard with us and making her sleep on a mattress on the floor next to our bed.

Second, after months and months of discussion and contemplation, Steve figured out a way to jury rig the wall-mounted baby gate protecting the top of the stairs from an accidental tumble, so the ~~pain-in-the-ass~~ noisy, insistent cats can still come and go when the gate is closed. This is huge, as it now meant that we could remove the childproof doorknob cover that's decorated the inside of Samantha's door for so long, to allow her to exit her room when she wakes up, to go use the bathroom on her own. She sleeps very soundly at night, so it's not until she awakens in the morning, which is perfect. I still hear her get up, and go to check on her, but immediately we could see that she was super-proud of the uber-independent, big-girl notch in her belt.

Of course, when her independence is exerted while I'm in the shower, flushing the toilet when she's done, it does have its definite drawbacks...

Everyone Loves a Parade

2011-12-03T17:20:00.001-05:00

It was a perfect day for a parade. Just. Perfect. Chilly, sunny, absolutely no wind or breeze to speak of, and we were sooooo ready. Samantha had never been to a parade before, and I'd been scouring the newspapers for listings of local events this season that I might be able to take her to. Just the day before, I ran across this one, in a town I've been anxious to visit, not too far away. And the town itself could not. have. been. more. adorable. Several hundred years old and staying true to its origins with an incredible charm that takes your breath away, we weren't (I mean, I wasn't) surprised to be greeted by the sounds of bagpipes as we walked towards the parade route from our car.

We staked our spot on the curb, and Princess was so, so, so, so good and, surprisingly, patient! She sat and watched all of the growing activity around us, and when the parade started, she loved it! It was almost done by the time she'd decided she'd had enough, and I was happy to oblige her the return to the car.

My only complaint was of the sheer quantity of hard candy being thrown to the crowd from the floats. Keeping it from Sammi (and keeping her from throwing herself in front of the local Polo Club's horses to pick up a stray sweet) was a little bit of a challenge. I mean, how do you tell a child she can't eat a piece of candy? We've never given her hard candy, and I'm absolutely terrified of the day someone gives her one when we're not around to stop it. Can we make her wear a sign around her neck, ala Gremlins, that says, "Do not feed me hard candy?" Fortunately, some kind soul on one of the floats chucked down lollipops, and that seemed to appease the child. Lollipops are okay, with supervision.

And I now have a pocket-full of candy for those all-too-frequent needs for a sugar fix. hehehehe

Revolutionaries in front of Ye Olde Safeway Supermarket...

Kind of an odd look on her face, almost like she's feeling a bit unsure about something, but if you look behind her, you can see my leg and my hand on my knee. This was a seriously awkward angle to be taking a pic... I see this photo as her excitement lighting up her face as the parade passed by.

Super Steve, Ancestor Detective

2011-12-01T08:00:00.001-05:00

Oh, if only I could count the number of times I've started and stopped, started and stopped this very post since July. Each time I begin, I realize that it's just too much to handle all at once, and needs to either be carefully compartmentalized into multiple posts addressing each amazing piece of the story, or re-configured into a whole new post altogether. I chose the latter, although that's not to say I won't be following this up with multiple other posts to flesh out the pieces later.

I wrote sometime last year about how Steve's been researching his family tree through Ancestry.com and other services that help put all of his data together into a (sort-of) neat, tidy package, one that moves back through time, uncovering bits and more bits and still even more bits, tantalizing the brain and presenting bigger and more challenging puzzles as he goes. It all started about 11 or so years ago, when he finally confirmed who his birth father was, but when he went to physically find him, it was too late, as he had passed away less than a year before. At that point, he decided to start his search in earnest for his half-brother, the son of the father he'd never met, that he'd heard existed somewhere.

Since then, in bulleted fashion, a rundown of his escapades. I will, however, spare you any of the details that could be considered by some as scandalous, in an effort to protect his family, and I will also refer to real people by their initials, if so needed.

1. Found a branch of his family history dating back to the mid-1400s.

2. Found some incredible photos of family members and ancestors that he never would have found without being able to tap into this amazing resource (the photo above is of his maternal great grandmother and great grandfather, and the photo of the man below is of his paternal first cousin, 5 times removed with his wife and children, who moved from England to Canada).

3. Discovered he's a direct descendant of a Mormon convert who came to America in 1850 to be part of the 2nd wave of Brigham Young's Utah settlement. Sadly, he died in Missouri, while making his way west. Later, other family members married into the Church and did finally settle in Utah.

4. Found a branch of his family who had come over from England, settled, and fought for the Americans during the Revolutionary War (a fact that I tossed to him this past Fourth of July, a day on which he usually eschews traditional festivities by saying he refuses to celebrate a day that we got our independence from his country...LOL).

5. Found living relatives of a branch of his family in Texas and friended them on Facebook.

6. Found a first cousin also living in the US, and has kept in pretty steady contact with her, gathering information about his father that he wouldn't be able to get anywhere else.

7. Found (or was found by) and has become friends with A., the cousin of his uncle-by-marriage, a woman in Australia who had been given up for adoption at birth, searching for her birth mother. She and Steve have provided support to each other during their searches, and celebrated the triumphs. Just yesterday morning she called and said she'd found her mother! Finally! We're hoping for a visit from A. and her husband some time next year.

8. Found his half brother, M., in July!!! After ordering the death certificate of his brother's mother, hoping that the brother would be the one to have signed it, he was rewarded with just such a signature, and an address in a far-away land (the reason he'd been so hard to find!). They have been in touch ever since, which is no small thing, considering M. didn't know that Steve existed...

9. Found not only M., but J., another brother, someone Steve had thought had died at age 3 (based on the faulty data another family member had plugged into Ancestry.com)!!! I know that J. and his wife read this blog, so here's a quick shout out to them! So glad to have you as part of our family!

And the list goes on...

Whew. So many years, so much stress, so much hard work, so much reward, so many mysteries still remaining (oh, and there are some doozies, believe me!). But piece by teeny, tiny piece, the puzzle continues to fit together, growing bigger and bigger every day as more and more family members are added.

And this quest is so important for so many reasons. This isn't just Steve's story. It's the story of brothers, cousins, uncles and aunts who are finding each other for the first time and learning their history from what's been uncovered.

It's Samantha's story.

Was Gonna Be Wordless Wednesday: Who's Excited for Christmas?!?

2011-11-30T05:50:00.001-05:00

(Btw, one of the winners of the 25 free Shutterfly holiday cards from my giveaway a few weeks ago never got in touch with me, nor did I have contact information for them, so I still have a code to give away. If one of you out there hasn't gotten your cards yet and would like the last code, I'll give it to the person who, in their ~~funniest, most pathetic~~ best sob story "voice," can tell me why I should give it to them. The code is good until December 31st, so even if you're the worst procrastinator, you can just breeze straight through Christmas and get Happy New Year cards instead!)

Playing (Reindeer) Games

2011-11-29T11:00:00.001-05:00

May I just say, for the moment, how appalled yet secretly pleased I am that Christmas has come upon us again so doggone quickly?? Wasn't it just so recently that we were packing up the tree and telling Samantha that Santa would come to visit again in 12 more months, worrying about how she'd handle such a long break away from the sparkling bulbs, twinkling lights and front-yard glitz (read: tackiness) of the holidays? Those are among the long list of things that makes this time of year so special, the things that bring the glow of excitement to the faces of children, the bubbling warmth in the hearts of parents who see it.

While many (primarily in the retail industry) argue that Christmas is perfectly justified in beginning before Halloween costumes have even been folded up and packed away, before the orange pumpkin buckets have even been emptied (this does not, however, include the poor retail associates and managers who are stuck listening to endless loops of holiday tunes, day in and day out - I know this from nearly 20 years of experience...), we follow English (or at least Steve's) tradition of putting our tree up on December 1st (when the Advent calendar begins), removing it by the 5th (or is it 6th?) of January, the 12th day of Christmas. Traditional American views put the official start at the day after Thanksgiving, which is absolutely fine by me, as by that time I have personally (mostly) reconciled the rapid passage of time and the full year older that I have become and am ready for it all to begin again.

Friday I ventured out, intrepid (and childless - what, d'ya think I'm completely nuts?), into the wilds of the local mall. Actually, it wasn't all that bad, and I was in and out in about an hour after hitting the 3 stores I wanted to visit. I won't talk about how dreadful Bath & Body Works was, packed all the way from floor to ceiling with merchandise, the spaces in between filled in by the hundred or so people crammed into the tiny store. And yes, I actually stood in one of the 5 lines to make a purchase, and no, it wasn't even for a Christmas present - I just needed to get one of those thingy-ma-bobs that you plug in that make a room smell good so the stench that normally comes from the basement bathroom where the cat litter boxes live wouldn't waft up the stairs and into the living room anymore. Ugh. (But for those of you who are curious - it seems to be working so far!! Worth the wait!) Oh yeah, and while I was in there, some crazy chick with a long, double stroller, a toddler and a newborn baby came in. WTH? When Sammi was a baby and in a stroller, there was no way in H-E-Double-Toothpicks I'd even attempt that. And of course, one of the kids had a major meltdown while they were in there. Lovely.

Soooo, back to the title of this post... We're having a slightly difficult time trying to figure out what we can get Samantha for Christmas. I mean, she has a lot of stuff, but I'm not convinced that it's all age-appropriate and stimulating. I want things that will help her learn while still being fun. If you ask the Princess what she wants Santa to bring her at Christmas, she states, simply, "books." Works for me! If you press her further, asking what kind of books, she'll reply, "Biscuit books." Just goes to show her ever-increasing love of reading. One other thing we're contemplating is a cash register. She loves pretending to run a store or a restaurant, right down to fleecing me, highway-robbery style, on simple purchases ($10.00 for a banana, anyone?). But currently our money is imaginary, and as math concepts are soon to be introduced at school, we'd love for her to be prepared.

However, I'd like her to have some games. She has Candyland and has played Chutes and Ladders, but can someone please tell me what the heck they were thinking, having such long, drawn-out games with so few rewards for young children with notoriously short attention spans? She's pretty bored with them. Come to think of it, so am I. So on goes our quest for bigger and badder, age-appropriate, entertaining games.

Suggestions, anyone?

In the meantime, let the decorating and front yard transformation commence. I'm leaving that department to Steve, who is raring to go, dusting off the old and bringing in the new, ready to create a child's Christmas paradise in lights (and other stuff). Mind you, our front yard is about the size of a postage stamp, but he's sure to make some pretty fun, lasting memories to reach the eyes of our 3 1/2' tall munchkin, who is ready and waiting to be dazzled.

An Alarming Statistic

2011-11-28T09:55:00.001-05:00

Tammy, at Praying for Parker, posted some very startling and unsettling statistics on her blog last week. I've heard similar stats before, but have probably been in denial ever since.

But denial won't make the problem disappear.

((deep breath)) Okay, here goes: estimates show that 90% of females and 50% of males with intellectual disabilities will be sexually abused.

Speechless.

Now, if I can get my heart to stop pounding and my brain to stop spinning long enough to continue, I'll give you some excellent ways to build awareness and help prevent this awful, awful thing from happening to your child.

Tammy found the following list posted in a group she's a part of. I don't know who the author is, but I send them a heartfelt thank you for posting this. It's difficult to read, but so, so necessary. Please take the time to educate your spouses and your children about this, and don't let your child become a statistic.

1. Start early. Introduce correct terms for body parts. This way a they can report clearly if someone engages in sexual misbehavior.

2. Introduce body privacy. NO ONE is allowed to tickle or play around with the private parts of your body. To counter any attempts at or*l s*x include the mouth as a private body part. NO ONE is allowed to put anything part of their body into your mouth.

3. Make it clear that if someone breaks the rules about body privacy, YOU (the parent) need to know about it.

4. Teach your child to stand back and hold out their arms and say – in a BIG LOUD – voice and say, “NO! STOP THAT!” “IT’S NOT ALLOWED!” Practice saying NO! assertively.

5. Practice distinguishing secrets to keep and secrets that must be told. Children and adults with intellectual disabilities often think they can tell good secrets but have to keep bad secrets cause telling a bad secret might make someone feel bad.

6. As sex abuse is about power, work to empower your child with independence in dressing and toileting.

7. Develop and practice problem solving skills. Role play different situations and how your child should react in them.

8. Bear in mind that if your child lacks physical affection, approval and attention, they become more vulnerable to predators.

9. Develop social skills. Personal space. Eye to eye contact. Make sure your child knows their phone number and address.

10. Often children with special have already developed a passivity to adults, especially to caregivers and other professionals. Teach your child it is okay to stand up for themselves.

11. With non-verbal children consult a speech therapist for communication symbols for sexuality.

Samantha is a very affectionate child, which is a really wonderful thing. BUT...while she has gotten better about it, she does still like to hug random people. It's so hard, as a parent, to know how to teach your child to distinguish between the people it's okay to hug, and the ones it isn't okay to hug. Or to tell I love you. We really have to work more on teaching her boundaries. And, piggybacking on yesterday's post, teaching her Stranger Danger and how to fear and stand up for herself in certain situations.

Please re-post this, and share it with your special needs community. Armed with this information we can help to reduce the number of incidents, and protect our kids.

Waiting Until Monday

2011-11-23T09:21:00.000-05:00

I know in yesterday's post I referenced a new post, a super-important post, that I was going to put up today. However, given the impending holiday and the black hole in the blogosphere this week (whew, it's been quiet!!!), I think it would be best to wait until Monday.

It's that important.

And I don't want anyone to miss it.

In the meantime, I hope all of my American readers have a wonderful and joyous Thanksgiving, full of friends, family, turkey and cranberry sauce!

And a big bottle of TUMS, of course.

Oh yeah, and headache meds to stave off the inevitable.

And a pair of pants a size bigger than you usually wear.

Yeah, yeah, yeah, you get the picture.

Happy Thanksgiving!

Fear

2011-11-22T14:16:00.003-05:00

I've often wondered if Samantha understands fear. She certainly understands many other emotions, but how do you actually teach the concept of being scared? Not like I want to teach her that, or to make her feel that, but it's actually an important part of self-preservation, something I know will be a challenge to get across and teach her. For most of us, it's innate. It's that intrinsic part of us, sheltered deep down inside, that we avoid at all costs, unless it's absolutely necessary. We can acknowledge that it exists, but part of us just takes over, subconsciously, triggering the fight-or-flight reflex when we're placed in danger.

In recent months, Samantha has been showing more and more that she understands some of the basic situations in which children can feel fear. Although she's faking when she says it, she'll sometimes say, at bedtime, I'm scared of the dark. Now, having been her mother for 5 1/2 years, I know full-well that she is not scared of the dark. She's never asked for a night light, nor has she ever had even the tiniest resistance to making herself quite comfortable and falling into a deep sleep almost within the minute her head hits the pillow (like mother like daughter...). I know she's only saying it because she hears it on television or books or from other children. And it doesn't bother me, and we'll both have a laugh about it when I call her bluff. She also will show reticence, and perhaps fear, when climbing at the playground. She'll begin to make her way up a climber, then stop, whine, and say she can't do it, it's too high. She's definitely uncomfortable with the situation, although I'm not quite sure it's fear.

But she did something on Saturday that startled even me. After a fairly busy morning, she and I headed across the schoolyard and into the next neighborhood to a small, local playground. It was 3:30, and the sun was no longer shining high in the sky. The closer we got to the playground, the less visible the sun became, falling behind the rows of townhouses around us. It was chillier without the warm rays, but Samantha was perfectly happy to have me push her higher and higher on the swings, laughing the whole time. Looking at my watch, I deduced that we wouldn't be able to stay too long before it got got dark, and I told her as much.

Big mistake? Not sure...

At that declaration, she suddenly looked up at the sky, a worried expression on her face.

"I want to go home now."

And she wasn't just saying that. She was adamant.

I stopped the swing and got down close to her, asking her why she wanted to leave so suddenly, and that's when she said it.

"I'm scared."

Scared of what, baby?

"Scared a dark."

I hugged her, explaining that there was nothing to be scared of, and that we still had time before it got dark, but she grabbed my hand, pulling me out of the playground, back towards the safety and familiarity of home.

I felt really, really bad about it. But that was something I was certainly not expecting.

I think I should actually be pretty happy about it, as it shows that she is thinking about consequence, such as having to walk home in the dark, but guilt for making her feel any kind of fear hit me pretty hard.

How have your children expressed fear or self-preservation, and in what kinds of situations? What kinds of concerns do you have about this topic?

Tomorrow's post addresses one of the most real and frightening kinds of fears that we need to educate our children and ourselves to be aware of and to fight against. I hate to have to post it, but it's too important not to.

(And now for a quick old pic, perhaps showing overtiredness, perhaps showing fear? From her 2nd Christmas, at a year and a half old)

A Perfect Fall Day

2011-11-20T13:34:00.001-05:00

Fall days don't really get too much more beautiful than this. A few clouds, a lot of leaves in desperate need of collection, a lovely little princess in desperate need of a nap, and a closing-up-shop sale at Pumpkin Patch in the mall...

Nap issue aside, and still not convinced that I have the right photos yet for our Christmas cards this year, I strong-armed the little princess into some new clothes and boots, loosened her frizzy, slept-on braids to let her hair fall free, and tried to use my magic mommy powers to brainwash her into thinking that going outside to play in the leaves while Daddy was blowing them into big piles was a good idea.

And really, it was a good idea (even if I am omitting the photos where she's crying...).

I'm well aware of the fact that young children occasionally need naps. Especially when they wake up before the crack of dawn, and even more especially when they have the oh-so-joyful addition of a head cold. And when you tell a young child that they're going to get a nap, the telltale sign of just how much they need one is by the vast volume of tears they shed upon hearing that suddenly-shocking statement of fact.

So! Back to the beautiful fall day... We really did have a good time, and even though she rarely looked at me when I had the camera up (think she's trying to tell me something? Yes, yes, yes she did say, "No camera!", but does "no means no" actually apply in this situation? Am I scarring my child for life?), I think I got some Christmas-card worthy shots from the 170-something images in the group.

For those of you who wanted an after shot of the tresses minus 3"... I'm really not sure if it's particularly even, but I must say, those clean ends really do look nice!

I'm not sure how I feel about this photo. I think I like it, but she just looks kind of vapid and startled. I like the composition more than anything else, and the fact that you can actually see her eyes (oh, hooray!).

Hide and seek. Oh, how I love stripey tights!! Anyone know why cute, multi-color, stripey tights are next-to-impossible to find without spending a small fortune, or jumping on a plane to some random Western-European country (any one! you pick!)? Sometimes I think that here in America, we just don't get childhood like they do in Holland or Germany or Italy. We try to dress our kids up like little grown-ups (not slamming Janie and Jack or anything ((okay, I am)), but you get my drift...), completely missing the point of kids being kids. I recently found this blog, and while I can't read a word of it (my sincere apologies to the year I spent in Germany and to my high school German teacher, Mr. Freimanis), it's a veritable feast for the eyes, summing up exactly what my (unfortunately cash-poor, empty-pocketed) vision is for children's clothes. If you visit my Pinterest page, you'll find a board of just such amazing items. Okay, gotta get off my Oilily soap box now.

My absolute favorite from the session, and a shoe-in for the card if I decide to use these pics. Woohoo! I can see her eyes!!

My sensitive girl actually got upset when Daddy said he was going to put all of the leaves in bags. Until, that is, he asked her to help. He's really so much better at re-direction than I am. I don't think I'm quite patient enough to re-direct and see it through to fruition. It's not always a magical, on-the-spot process, and sometimes takes a few approaches before she warms up and comes around. In this case, the process was quick, and she actually helped a lot. She and I bagged for about 15 minutes before she'd had enough and started heading for the door.

Stay tuned for some possible card options. I may be polling the audience...

Objective Reporting

2011-11-17T07:04:00.001-05:00

Jenny, over at Our Little Chili Tribe, posted yesterday about her son's Developmental Assessment, and it reminded me of just how awful they can be. We, as parents, know what our children are capable of, and we, as parents always need to know in what areas improvement is needed and what we can do about it. That would be productive. But those assessments can be really deflating, leaving you to wonder, "Why was that necessary?" I think the biggest negative of those assessments is when, after reading all of the things your child can and cannot do in the testing environment, you are left with an age. Not your child's current age, but the age at which they perform in each area. Talk about deflating! Really, there's nothing better than hearing that your child speaks/moves/handles utinsils like a child two to three years younger than their current chronological age. Right? I challenge you - give me one parent who smiles and says, "Okay!" and you'll seriously be able to knock me over with a feather. Or I'll eat my hat. Or I'll believe pigs can fly. Or one of those other silly little idioms we use to make a point.

I'm all for objective assessments, for learning what needs work, for collaborating with therapists to determine what tools are needed to stimulate growth and improvement, but I still have yet to understand why we really need to hear age. There's got to be a better way. Coming up with ideas and solutions is productive. Making the parent feel defensive and angry, sad and helpless, is counter-productive.

Now that Samantha is in Kindergarten, I'm not so sure yet if those developmental assessments are a thing of the past or not. I suspect that while the school-based services will not score her in that fashion in any areas, it is possible that her private ST and PT still may. Now that Samantha is in Kindergarten, academics are on the table. Academics, which are not a part of the IEP process, or at least not yet.

I expect that as a fully-included member of her Kindergarten class, Samantha will be graded and scored objectively, along with her classmates. Currently, the only modification or accomodation I am aware of being in place is the 1:1 aide, an amazing resource teacher who is so helpful to ensure that Samantha is able to keep up and stay on task with the instruction being given and to participate as a part of the group, something she sometimes has difficulty doing. Currently, Samantha is tested alongside her peers, observed objectively. I don't expect her to be babied.

Yesterday we received her very first report card.

And it was good! The areas that are graded are both academic and social, scoring the children on their ability to either exceed the expectation, show sufficient progress, be developing emerging skills, or need improvement (those aren't the exact terms used in the scoring, as they varied from section to section, but you get the idea). I am excited to see how those skills progress from marking period to marking period! I really don't envy the teachers having to churn these out for so many students every few months - what a BIG job that must be! But I am so grateful for it.

The snapshot of Samantha's report card above shows the areas of Reading and Writing. The black dots show areas that have not yet been worked on in the class, but will probably show up next marking period. The "E's" are for Exceeds Expectation. Ahhh, how wonderful that was to see! And the most exciting part of that is that Samantha also does most of the items that they have not yet covered, as well. If she's been working on them now, already, think how extra-ready she'll be for them next time! Mommy and Daddy are so super-proud!

The other areas on the report card covered more conceptual academic skills and social skills, all items she met expectations for or showed sufficient progress on. There was one little itty bitty teensy tiny Needs Improvement, however, and one that doesn't altogether surprise me...Exhibits Self-Control. Ha! I'm reasonably certain that I scored rather low in that area as a child as well...

Back to my point about objectivity...I thanked the teacher today for her objectivity in grading Samantha's report card. Really, as an educator, what else could she do? My expectation is objectivity. No free ride. No coddling. I think that's what we're getting. Samantha will learn to hold her own, to think and react on her own. This is the biggest life skill, one that will stay with her forever.

And this is where it starts.

Wordless Wednesday: Flashback to Self-Feeding

2011-11-16T09:41:00.001-05:00

At 15 months old, practicing her self-feeding skills:

FYI, the cat didn't get any.

Christmas Card Photos...Oy...

2011-11-15T16:53:00.001-05:00

(Re-posting this, as Blogger got all weird on me today...)

On Thursday the school announced that it was make-up picture day. I guess I kind of knew that and had let the day sneak up on us because I knew it would be pretty futile to convince Samantha to have her picture taken by a stranger. The first go-round did not go well, and no photo was taken, even with Daddy's reassuring presence there. I mean, unless the photographer (who looked like she was about 16 and bored out of her skull) planned on spending about 15 minutes with Samantha to get to know her and warm her up, there is no way on this earth that Sammi would sit happily with no tears, let alone smile. She barely smiles for me, when I've got my camera stuck in her face, and getting her to even look at the camera is a real challenge. Ugh, when did that happen? And I've heard that this is pretty common for people with Down syndrome, I think, but I truly do not understand it. Any thoughts?

Sooooo...last weekend I got Sammi dressed and took her for a walk along the lake by our house to get some sweet fall pics to use for our holiday/Christmas/whatever cards this year. I've got my free card code from Shutterfly in my hot little hands, and am chomping at the bit to create and order them. Out of the 250 or so photos I took on our walk, there were 2 or 3 shots where she was smiling and looking at the camera. My math skills suck, but even I know that that ratio is not very good... And, of course, the very best shot, the one I had been waiting all morning for that I took right before we came back into the house (literally, it was the second-to-last shot), won't. work. Why? Because I cut most of her head off.

Oy.

Now I am not in the least bit skittish about taking tight, tight headshots. When they're nice and tight like that, missing tops or sides of heads is actually okay! But when you want to keep the shot wide enough to show her cute outfit, you're kinda screwed.

I tried dropping it into some of the card templates on Shutterfly, and lo and behold, they looked totally weird. No surprise. It looks like she's ducking to be seen beneath a large overhang. I've also cropped the image into a tight headshot, and that actually worked a bit better. But, no outfit. Hmph. This past weekend, I tried again to get some decent shots, and again, got a small handful out of a rather large number taken, but I now have some options. I won't share them now, but as I get closer to making my decision, and once I can get Steve's opinion, I may publish a few... Not the etheral, angelic vision I'd had initially when I set out to stage the moment, but cute nonetheless.

Who'dathought getting just. the. right. Christmas. card. photo. would be such a production????

Today's Post About Christmas Card Photos...

2011-11-15T10:51:00.001-05:00

...has been misplaced by Blogger. So I'm a little bit confused as to why today's post has shown up in my blog feed below yesterday's post. Any thoughts? For those of you just bouncing onto my page who have already seen yesterday's post about Sammi's hair cut, please click here, or scroll down a little further to find today's real post about Christmas card photos... Blah blah blah, Blogger...I still love and adore you, and can forgive this minor transgression. Just don't do it again.

Biting the Bullet

2011-11-13T18:05:00.001-05:00

I probably could have come up with some clever title referring to cutting or ties, (or both), or The First Cut is the Deepest, but really, the moment of steely willpower I had to muster, that gritting of the teeth and holding my breath and convincing myself that it was the best thing to do, biting that bullet and trying not to scream really summed it up so much more clearly and realistically for me.

I did it.

For the first time in 17-days-shy-of-5 1/2-years, I did it.

I trimmed Samantha's hair.

It was never about the length. I think it had more to do with the symbolic nature of the act, I guess I felt that it should be more ceremonial. This was, after all, the hair that she was born with, that very hair that the doctor delivering her was so amazed by, the hair that never actually fell out, as it does in so many other babies. Granted, the ends have been so ratty for so long, that most of what was in existence when Samantha came into this world has probably long-since broken off and disappeared into carpets and playgrounds across the region.

I only took off about 3 inches. As a matter of fact, you can't even tell, really, other than by looking at how smooth and shiny the new ends are. She can actually still sit on it, which I don't necessarily think is a good thing...

Has this made me brave? Nah, I don't think so. But it has given me a wee bit of confidence, especially since I told her what I was going to do, and showed her afterwards, and she reacted with interest, not fear (as I, myself, had feared). Has it made her brave? Sheesh, I certainly hope not! My biggest worry now is that she will think it's okay to try cutting her hair herself.

Maybe it's time for a little talk...

And one day, when she's old enough to comprehend the act and make the decision herself, I'm hoping we'll cut with the intent of donating her golden tresses to Locks of Love, allowing her to give some of her beautiful hair to someone that needs it.

Christmas Card Photos...Oy...

2011-11-13T15:39:00.002-05:00

On Thursday the school announced that it was make-up picture day. I guess I kind of knew that and had let the day sneak up on us because I knew it would be pretty futile to convince Samantha to have her picture taken by a stranger. The first go-round did not go well, and no photo was taken, even with Daddy's reassuring presence there. I mean, unless the photographer (who looked like she was about 16 and bored out of her skull) planned on spending about 15 minutes with Samantha to get to know her and warm her up, there is no way on this earth that Sammi would sit happily with no tears, let alone smile. She barely smiles for me, when I've got my camera stuck in her face, and getting her to even look at the camera is a real challenge. Ugh, when did that happen? And I've heard that this is pretty common for people with Down syndrome, I think, but I truly do not understand it. Any thoughts?

Sooooo...last weekend I got Sammi dressed and took her for a walk along the lake by our house to get some sweet fall pics to use for our holiday/Christmas/whatever cards this year. I've got my free card code from Shutterfly in my hot little hands, and am chomping at the bit to create and order them. Out of the 250 or so photos I took on our walk, there were 2 or 3 shots where she was smiling and looking at the camera. My math skills suck, but even I know that that ratio is not very good... And, of course, the very best shot, the one I had been waiting all morning for that I took right before we came back into the house (literally, it was the second-to-last shot), won't. work. Why? Because I cut most of her head off.

Oy.

Now I am not in the least bit skittish about taking tight, tight headshots. When they're nice and tight like that, missing tops or sides of heads is actually okay! But when you want to keep the shot wide enough to show her cute outfit, you're kinda screwed.

Friday Foto Flashback

2011-11-11T09:54:00.000-05:00

Just a little fun for today. Yep, it's 11/11/11. I don't exactly know what that means, except that people all over the world with OCD (I'm convinced that superstition is bred from OCD, and so refuse to acknowledge the black cat crossing my path and the cracks I'm about to step on - okay, I admit to throwing the salt over my shoulder, though...) and who have rampant conspiracy theories are probably looking for somewhere to hide. I don't know. Who can keep all these Dates-of-Doom straight? It's just another day. Maybe, just maybe, I'll remember to look at my clock at 11:11 and think, Wow, that's kinda cool.

Here are a couple of old Sammi pics, when she was just shy of and just past a year old. It's funny, I can barely see the resemblances sometimes between the pudgy baby of 4 1/2 years ago and the tall, mature 5-year old of today, but oh, that same old personality was shining through so brilliantly! Gotta go get my shades...

From March 2007. Look at those cheeks!!

From July 2007

A Ticked-Off Father's Response to Joey Barton (or: QPR Premiere League Football "Captain" Goes Too Far)

2011-11-10T08:05:00.000-05:00

My husband, Steve, called me at work yesterday to tell me about a bit of R-word controversy in the world of English Premiere League Football. Two days ago, Joey Barton, the much-disliked, already-controversial captain of the team, Queens Park Rangers, tweeted, "Just LOL-ed at TOWIE retards picture, good banter from the producers there. Look at all the Lemmings, happily posing.........." in reference to a photo of a group of people from a D-lister reality program making mocking gestures towards him.

First, let me just say, after checking out this guy's tweets in general, I can see he's a real jerk to begin with (I admit it, I originally said pig, but thought that might be offensive to pigs, and definitely did not think that pigs, in general, were jerks, and so I retract that comment lest I fall prey to doing the same thing others do so mindlessly and hurtfully - the very subject of this very post). Every single thing that this guy writes is offensive, obnoxious and painful to read. It's pretty obvious that this isn't the first time he's used the R-word, and probably not even the most offensive way in which he's used it (what are you willing to bet he's used it to directly refer to people with intellectual disabilities?). It's also pretty obvious he's a miserable person, and probably extremely unhappy to boot.

Sometimes Steve and I can let crap like this roll off of us.

However...

This guy's a public figure, one that people should be able to look up to, as the captain of his team. He's got loads of followers, and things he says have a way of making their way to the newspaper.

As did this particular tweet.

The English newspaper, The Sun, posted this article about the offense, stating that disability groups have made their displeasure known.

Steve, additionally, has made his displeasure known by e-mailing the following response to the Club team, as well as to a few specific people within the team including their PR person and their Liason for Supporters with Disabilities (cool, huh? Did you know that every Premiere League team has one of those? I bet that phone is ringing off the hook right now...).

Yay, Steve!!

Good Morning,

Normally I would not give a second thought about the antics of Pro Footballers but what your "Club Captain", Joey Barton "Tweeted" recently is just too much. Mr Barton is Club Captain and with such a role, he should be more aware of what impact his comments have on the general public. His "Tweeted" comment of "Just LOL-ed at TOWIE retards picture." is disgusting and offensive to members of the public who live with various Intellectual Disabilities.

Mr Barton is in a position where he should be representing QPR as a "Family" Football club that values all of it's supporters. There is a move to drive out racism in football, well how about driving out all prejudice irrespective of race, creed, color, sexual orientation and yes.... DISABILITY.

I am the parent of a beautiful, smart, fun loving football fan who happens to have Down syndrome. She deserves to have respect and not have words slung around that can hurt and perpetuate discriminatory attitudes towards disabled people. I have no doubt Mr Barton was not refering to people with Down syndrome when referring to the people in the picture, but it is an insensitive and childish comment to make. He certainly has the right to voice his opinions but to do it with responsibility.

Football is a global sport and players have to understand that they are no longer private members of the public. They have an influence on millions of people. Along with big salaries come big responsibilities. I do hope Mr Barton makes a sincere apology and realises he has a forum to help not hurt people.

Thanks,

Steve Bates

Oh, and not an hour after he sent that e-mail he got a response thanking him for the message and stating that it would be sent down immediately to the training ground and to Mr. Barton directly. A surprising response, and a good one. Not sure what that means, or how they're presenting it, although I suspect they'll be rubbing his nose in it in some fashion. We're not idiots, though, skipping through life thinking that when someone apologizes they mean it. Joey Barton has this crap ingrained into his very being. If he does come out with a statement of apology, we have no illusions about the nature of the apology and how it was probably garnered under duress. But public is public, and we should be thankful for that (mind you, this apology has not yet come), and some people are just sick and miserable, and I guess I can maybe find some little fiber inside of me that actually feels sorry for him and his pathetic self.

I'd love for sports clubs to have mandatory community service requirements for these kinds of things. Being told they're wrong isn't enough to change some people's minds, but showing them the consequence, showing them the people they are hurting, showing them how others are more alike than different...that may be just the thing to help change minds.

Here's a random baby photo of Samantha. I was always too scared to lie with her on the couch, afraid I'd fall asleep and she'd roll off, so these moments were reserved for daddy alone. :-)

Wednesday Whimsy and We Have Winners!

2011-11-09T08:07:00.000-05:00

Lisa L., Monica and Rob, step right up and retrieve your codes for 25 free holiday cards from Shutterfly! Monica and Rob, I've already contacted you both and heard back from you, but Lisa, please e-mail me at bateminx@yahoo.com and I'll send you the codes. :-) (Deanna, I'm sorry!! I'd already picked the winners and sent out e-mails when I got your entries!)

Samantha always wants me to put "nakeup" on her. After the gazillionth quick pat on the nose with my own nakeup sponge, I figured giving her her own (clean one) was the best solution (see below - works like a charm!). Btw, notice the 3 clips in her hair (placed by Her Royal Highness herself)? If I've never posted about how important routine is for our kids, remind me and I'll do it later. Let's just say, for now, that 3 is the rule for her with those darn clips. They're my clips, but I put them in her hair to keep it up for baths, etc., and if I dare to just put one or two in, I get a little tantrum on my hands until I'm in full compliance.

20

2011-11-08T10:59:00.000-05:00

Yes, I've been a bit of a blog slacker the past few days. After a whole month of posts, it felt like the right thing to do, sitting back a bit, avoiding the computer for a while. But boy, did it feel weird. I know I'm not the only one out there that's thinking that. And yesterday at work I still kept an eye on my analytics in real time, watching each locale pop in and pop out, checking for updates (ahhh, don't think I don't know who you are!!!), and I also felt guilt.

So here I am, back in the middle of it, hopefully writing something relatively interesting, although I can't promise that. I can only do what I always do, write as it all rolls out of my head and through my fingertips, winging it, hoping for the best and trying not to put you all to sleep.

Hey, you there...you still with me?

So today's post is gonna be quick (how many times have you heard me say that before?). It's to commemorate 20.

10,512,000.

=175,200 hours.

=7300 days.

=20 years.

20 years of marriage to my wonderful husband, Steve, celebrated on Sunday! Wow, such a long time!!! We were seriously just kids, when you think about it. We've grown so much together, been through so much, gone from the wild life of the London club scene to the responsible, domestic life of child, house and suburbs. Steve recently found some old frinds from that wild life on Facebook, and they have tagged him in some old photos. Photos that make some people, who didn't know us then, laugh, but photos that make me look back and say, "Wow, awesome!" Amazing how that much time has passed and how we really don't feel like so much time has passed, until we look at the photos and see how truly young (and thin!) we both were.

So, how to celebrate 20? We're not much for big to-do's. We exchanged cards in the morning, then had a day of family time, just the 3 of us. Took Samantha to see Puss In Boots (or, to her, Cat in the Boots the legendary pirate cat. LOL). Her anticipation certainly showed during each. and. every. interminable. preview. After each one, she said, hopefully, and much to the entertainment of the people sitting behind us, "The cat now?" She enjoyed the movie for the most part, getting a little bit antsy during some of the slightly long, drawn-out scenes and falling sound asleep in the last 5 minutes (what do you expect with daylight savings time rearing its ugly head and no nap?). Later, Steve cooked a fantastic dinner, and exhaustion overcame us all early.

I love you, Steve, and look forward to the next 20!!!

More About Those Holiday Cards...And Other Weekend Stuff

2011-11-05T07:45:00.000-04:00

So, I didn't think I'd have any trouble trying to give stuff away yesterday! LOL C'mon, guys, don'tcha want some free holiday cards from Shutterfly? I know the blogosphere's been a little saturated with this offer this week, but all I can say is for those of you who haven't submitted any entries, what are ya waiting for? Seriously, I've been looking forward all year to making my holiday cards this year. I loved last year's so much! Please take a look at yesterday's post and the 4 ways you can get a chance to win one of 3 codes for 25 free cards from shutterfly. Now with those odds, it's a pretty good chance you'll win... Easy, right? And one of those ways to win is by donating to the adoption fund of one of the Reece's Rainbow Angel Tree children. I was kinda hoping to generate some funds here...maybe not the most efficient or effective way, but it's something, right?

Anyway, that's my little bit for today. :-)

Samantha was up at an ungodly hour again this morning (she's been skirting 5am all week - wth? And I know it's only going to get worse when we change the clocks tonight...), but at least it's the weekend and I can give her a nap today (who am I kidding? It's just my excuse to get a nap myself...). Need her fresh and happy to go see Puss In Boots this afternoon! Won't attempt the 3D version, as I highly doubt she'd keep the glasses on the whole time, but I think she'll really enjoy the movie. Anyone else gone to see this yet? Can't go wrong with Antonio Banderas, an animated cat and some brilliant Shrekian humor, right?

Oh, and back to the holiday card thing...I really want to do the photo shoot with Samantha this weekend for the card pictures, but I have this vision in my mind of where I want to do it, and how I want it to look, but logistically, it could be difficult, if not impossible, location-wise and, especially, cooperation-wise. Maybe I'll just be brave and attempt it. It's nothing daring, it's just not practical. Whenever I try to stage something that's been growing and building itself up in my mind, a perfect scene taking on a life of its own, Samantha decides that she will do anything and everything to sabotage it. Anyone ever see a Christmas card with a pouting, frowning, crying kid on it? Me either.

Yet.

Shutterfly Holiday Cards - Where to Start?? (and a Giveaway!!)

2011-11-04T09:46:00.002-04:00

Oh my goodness, I am in so much trouble this year... Last year I blogged about Shutterfly's holiday card selection in exchange for 50 free cards, and have been extended the same offer again this year. But this time, it's even better, because I've got a giveaway for you, the reader, too! Stay with me here...

So back to the trouble I'm in...

I had the. absolute. hardest. time. ever. finding just. the. right. card last year to use as our holiday mail-out. There were just way, way too many amazing options! And it looks, if I'm not mistaken, that Shutterfly has added even more options this year! Where do I start? I thought the one I chose last year was the most perfect card (certainly the sweet little face featured on the card had something to do with it...), but of course, I can't use the same one twice. That would be like, well, sending the same holiday card two years in a row! Or something.

Here's the card I made last year.

This year I'm finding myself partial to the cards below, but ultimately, I think it'll come down to what photos I end up wanting to use.

It's no secret I'm a Shutterfly fan. I love their gift selections and have two of the photo mugs (which somehow still have retained their original color and luster despite countless trips through the dishwasher), along with several photo books I have created. Last year they introduced their new custom path, a way of customizing your photo books in even more creative ways. I love this! Can't show you my latest custom path creation, though, because someonewhomightbereadingthis might be getting one for Christmas this year...

So now here's the fun part (apart from the Sammi photo-shoot I'm planning for this year's greetings)! I am giving away, with Shutterfly's blessing, three codes for 25 free holiday photo cards! Yep, that's 3 winners! These things ain't cheap, either, so this is a great opportunity (although only one code can be won per person - no doubling up!!) for all of you! (Btw, I think this also applies to those of you in other countries - you would still pay for the shipping anyway.)

I'm going to give you each four chances to win those 25 cards. Please submit one comment for each entry using the criteria below, and next Tuesday I will randomly select the three winners.

1. Show me a link to your favorite Shutterfly holiday card

2. Make a donation in any amount to the adoption fund of one of the waiting children on Reece's Rainbow's Angel Tree (a $35 donation will get you an ornament of one of those waiting children, though!)

3. Tweet the link to this post

4. Link this post onto your Facebook wall

Good luck!

I Love Surprises!

2011-11-03T08:12:00.001-04:00

Sammi's teachers have asked me to be kind to them on my blog, to say nice things. And to be perfectly honest, I don't think it would be humanly possible to say anything but nice things about them!

And isn't that a wonderful place to be?

They are all truly amaaaaazing.

Our first Parent-Teacher conference was at 7am on Tuesday with Steve, Samantha and me, along with her main Kindergarten teacher and her Resource teacher. Samantha was a real trooper, waking up early as if in anticipation of the before-sunlight trek (okay, 40 seconds in the car...) to school, making it super-easy to get her fed and dressed, hair perfectly braided and ready in plenty of time. Once inside the classroom, she made a beeline for the library area, reading books and putting each one back as she finished with it.

We were all able to talk uninterrupted.

Now this was a meeting at which we were not expecting to encounter any surprises. We speak to the teachers twice a day between the two of us, and have a pretty good idea how things are going for Samantha.

But oh, how we were surprised!

First things first, our state has something called PALS testing for Kindergarteners.  Just when we thought we'd heard all of the acronyms we could ever, in our lifetime, expect to hear, we discover that there would be yet another lifetime's-worth of school-based tests, each with a name designed solely to boggle our minds (and while that did surprise us, that's not what I'm referring to when I say we were surprised...).

PALS is short for Phonological Awareness Literacy Screening (try saying that 10 times fast...). It consists of 1:1 testing between student and teacher, once in the fall and once in the spring, for all students, to determine whether or not the child may need additional reading instruction outside of what is ordinarily provided to typically-developing readers. I love that they screen early on to catch potential problems at the point the child is only just learning to read.

The Resource teacher, the person who had administered the test to Samantha and the other children, reviewed the exam and Sammi's results with us. What surprised us was the page of the test that had five 3-letter, hand-written words, words that had been written by Samantha's hand alone.

Now...

That, in and of itself, is a wonderful thing, but I'm not too surprised she can do that - she's been writing her letters with more and more accuracy over the last 2 months to the point that you can tell her what letters to write, and she'll write them on-the-spot. She writes her first name independently on each and every paper that comes home from school. Actually, she writes her first name independently on each and every piece of paper, period, including whatever she can find at home.

But nobody told her what letters to write this time.

This portion of the test consisted of the teacher saying a word, slowly, clearly, carefully enunciating the letter sounds, and the child writing the word. By themselves. By herself. The margin of error allowed for the child to choose an "e" over an "i" or vice versa, or a "c" over an "s," etc., for those words that had similar-sounding letters in them.

Holy cow, she nailed it!!! Did I know my daughter could spell anything other than her first name without seeing the word written in front of her?  Hell no!

2 months.

2 months she's been in Kindergarten, and she killed each section of that test, getting scores like 8 out of 10, 9 out of 10, 24 out of 26, surpassing the benchmark scores that were set to determine pass/fail by miles.  And for the one section she scored just a 5 out of 10, the benchmark was actually set at 0.

Oh, and that night, while she was in the bath, she surprised me, yet again, by reciting the Pledge of Allegiance (sure, the words weren't quite right, but hey, I never knew them the right way, either!), complete with one invisible nation.  Hehehe

Sometimes I feel weird posting so many brags on my blog. But I honestly can't help it. This kid has amazed me from Day 1, and when I see how incredibly hard she works to reach the goals that are set, it overwhelms me, warms my heart, fills me with so much pride I just might burst. How else can I get it out?

Samantha's class had a Harvest party on Monday (yeah, yeah, I know, it was really a Halloween party, but in the interest of remaining holiday-neutral, that's what it was called), to which parents were invited.  Steve and I were unable to attend, but one of the other children's mothers, stopping in at the office on her way out of the school (not sure if she went into the office specifically for this reason, or if it somehow came up in conversation while she was in there for something else), reported to the staff there that Samantha was the most polite child she'd ever met.

Be still my heart...

Report cards come out in the next week or two. Report cards!!!!!  How did I forget that HUGE milestone in the life of an elementary school child? Okay, so it's more of a milestone for the parents...

Fully-potty-training, turning 5, losing teeth, starting Kindergarten, reading, writing, walking to class on her own, taking tests, Parent-Teacher conferences, report cards...how much more of this big-girl stuff can I take from her??

I am reasonably sure we will not be surprised by what we read on her report card.

Or will we?

Pirates...Aaargh!

2011-11-01T10:09:00.004-04:00

Hooray for Halloween! One of the most creative times of the year, when children can express their inner gangster/princess/witch/ninja/DarthVader/ghost/bumblebee/pirate. Parents ask them, so what do you want to be for Halloween this year? And the answers are almost always amusing, providing food for thought and some insight into the minds of the little ones.

Samantha, ever-influenced by the tide of children's television that enters her brain daily, didn't susprise me one bit by her decision this year. I saw it coming a mile away.

Pirate.

What children's show doesn't feature at least one episode where the characters are pretending to be pirates? Mind you, this is not fueled by current pirate-lore, the vicious drug-runners of the coastlines, but by the romantic pirate-vision of storybooks, of fairy tales, of history, involving (in realistic detail or not) parrots on shoulders, trunks of gold, damsels in distress and swashbuckling sword fights.

So after vacillating back and forth a few times from pirate to ghost back to pirate again (at the moment, she's pitching ghost as the costume of choice for next year...what happened to princesses?), we were ready. The only items I was prepared with were pirate bandana-hat, eye patch, gold earring and sword. I figured we'd wing the rest of her attire, and with a few forays into the darkest depths of my over-packed and disorganized bedroom closet, that's what we did. To be perfectly honest, I wasn't entirely sure, even up to the time I got her dressed to go out, of what exactly she was going to wear, but somehow, it all came together nicely.

And voila, the New Romantic pirate in all her glory.

Aaaargh! Give me some candy! (Please?)

Fabbo pink-striped Barbie socks from Target! Could not possibly have done better!

Sporting, oh so much more fashionably than me, a black lace top I'd gotten for an 80s party last year. And here I was, thinking it'd never see the light of day again! Oh yeah, and she's wearing one of my 3/4 sleeve white work blouses under it...re-purposing at its very best...

Candy or plank-walking - your choice!

Day 31: The End

2011-10-31T09:39:00.000-04:00

As the month of October draws to a close, I am both exhausted and exhilarated. What a fun ride this 31 for 21 challenge has been! I remember it being a blast last year as well, and while I knew it would be a stretch to commit to, I made it!! I have really enjoyed reading everyone else's posts this month (when I could), and apologize for all of those I missed. I think the challenge was less in the writing of my posts than it was in the attempt to read the posts of others. Time was in great demand, both personally and professionally.

Tonight is Halloween, and as with every holiday/notabledaythatoccursannually, I look forward each year to Samantha's increased understanding and participation. She's excited to don her pirate's costume and greet each neighbor with an "Arrrrrgh, matey" as she robs them of their candy (to be more specific, I will be instructing her to select Reece's, Milky Ways and Twix). Candy she'll only just get a taste of, as she so rarely has it, and we'd like to keep it that way.

Yes, people, we are sending our child out to do our dirty work for us.

Hopefully I'll have pictures up tomorrow or Wednesday.

But until then, Happy Halloween, and even more importantly, Congratulations ALL on an awareness-filled month!

Day 30: American Horror Story - A Brilliant, Rising Star

2011-10-30T16:21:00.000-04:00

I know, I know, Day 30 is super-late. It's 4pm, and I have been throwing a few random ideas around to write about, but I think I'll just focus briefly on a new show I've started watching - American Horror Story, airing on Wednesday nights on FX.

For me to add yet another series into my sadly-excessive television-watching life is pretty bold, as even between seasons of some shows, the addiction that is reality-tv programming rears its ugly head, sucking me in until I barely have time to scarf down dinner or use the bathroom or write a blog post or something...

So, my newest obsession is, in a word, amazing. Scares the crap out of me. Even just the opening credits alone, disjointed, jarring, creepy as all get-out, send shivers down my spine. And yes, I'll admit it, I watch it through the spaces between my fingers as they're spread across my face, or in bed with the covers pulled up to my chin, hands at the ready to bring them up above my eyes. Makes me feel like I'm 8 or 9 years old, sneakily staying up late on a Friday night to watch the horror series that aired on ABC in the late 70s (ooh, those were soooo good! Anyone else remember them?).

One of the highlights of this fright-fest, besides the absolute joy of being scared, is a truly talented actress, one who keeps you riveted to the screen, both for her colorful character and for her creepiness. Oh yeah, and she sports an extra chromosome.

Jamie Brewer plays Addie, daughter of Jessica Lange's character. American Horror Story appears to be her only film/tv credit, but I think we'll likely see more of her. And I won't give anything away, but while it looks like she might not be back after last Wednesday night's episode, once again, I think it won't be the last we'll see of her here, either...

When the series premiered, 4 weeks ago, the Down syndrome community on Facebook and other forums was buzzing about how poorly her character was treated by the others. Really? And the most disappointing thing about what people were saying was that most of the ones saying it hadn't even watched it, and were already vilifying it. Addie's mother was of an era where a slightly less-PC term was used for people with Down syndrome. And that doesn't make her any less of a loving mother. Actually, she loves her so fiercely, she stifles her a bit to protect her and keep her the little girl she thinks she should be. However, Addie is a very capable young woman who holds her own, even to the point where she's known to steal her mother's boyfriends. In one episode Dylan McDermott calls her a "freak," but Connie Britton quickly steps in to berate him, saying, "Don't call her that!" But in all honesty, her character certainly is pretty darn freaky.

If you've missed any of the episodes, FX is airing the series so-far in a marathon this Monday night (Halloween, of course!) starting at 10pm. If that's past your bedtime, get your DVR ready!

Below is a video showing a red-carpet interview with Jamie Brewer at the Premiere. She is definitely a rising star!

Jamie Brewer Interview at "American Horror... by maximotv

Day 29: Congressional Briefing on Down Syndrome Research

2011-10-29T08:06:00.000-04:00

On Tuesday there was a Congressional briefing on Down syndrome research on Capitol Hill. I had wanted to listen to it streamed live, but due to some technical difficulties (not to mention the fact that I was too busy at work to even breathe), it was unavailable. I got the link to the video today, and must say, it was an excellent use of an hour and a half of my time. I learned an awful lot, and feel like there is just so much to look forward to in the lives of our children and, frankly, in the lives of everyone, with or without Down syndrome. There were some very noteworthy speakers, whose names many of you may have heard of, including Dr. William Mobley, (UC San Diego Down Syndrome Center for Research & Treatment), Dr. Roger Reeves (Johns Hopkins University), Dr. Sally Shott (Cincinnati Children's Hospital Medical Center), and Madeleine Will (National Down Syndrome Society).

Among the things I learned (some of which I had heard before, but never in quite as much detail, more fully fleshing out the concepts for me) were how research into some of the medical issues associated with Down syndrome will help researchers to find cures for the whole population, not just those with Ds. How certain cancers are notably missing in most people with Down syndrome, while they will occur with alarming frequency in the general population, and how research on "trisomic" vs. "typical" mice has tied that lesser incidence to the presence of one particular gene. (cool, huh?) How obstructive sleep apnea (OSA) really occurs (the MRI images shown were astounding!), and with what frequency it occurs in people with Ds.

I want to come clean and be honest here on that last point...I was about to publish a blog post about how I don't believe that all people with Down syndrome necessarily have to have a sleep study, and since Samantha has absolutely no symptoms we aren't pursuing it - well, I was set straight today. Did you know that by age 4, 60% of children with Down syndrome have OSA? And did you know that by age 9, that percentage jumps to 80%? And that over the age of 12 (I think that's what they said, but without going back to the video I can't verify the exact age), that number is nearly 100%??? Well, I sure didn't. Looks like we'll be getting Sammi a baseline study sometime soon... 100%? Really? I swear, this kid sleeps like a log, no snoring, no moving, no nothing. I had no idea that it could/would change over time. Crap. It's like the thyroid thing - not if they'll get a thyroid issue, but when... (yeah, yeah, I know about 60% of you out there reading this are saying I told you so... I acknowledge my bad.)

I'm just glad I never published that post...yeesh.

There were so many other things I learned from that briefing, but can't recall right now as I type.

Please have a look, and I hope you all get as much out of it as I did.

Day 28: The Importance of Therapy for Children with Down Syndrome

2011-10-28T08:15:00.000-04:00

I started this post back in September as I was lining up topics for 31 for 21, knowing that it was a topic that was important to me, and something I'm passionate about. However, wanting to give it more time than I had, it just sat. Coincidentally, my mother sent me an e-mail two days ago, saying that if I was in need of a topic to write about in these last few days of the month, I should write about how important therapy is early on for our kids, speech therapy in particular. You know what they say about great minds...

Shortly after Samantha was born, my mother and I had a conversation about therapy. She told me about someone she knew who had a child with Down syndrome. She said the child, no longer a baby, was doing well, and that her friend (well, I'm not sure whether it was a friend or just someone she knew in passing) had been determined to do whatever was possible to help their child, starting at a young age. I specifically remember my mother using the term, "throwing whatever they could" at the child (meaning therapies and opportunities) to help the child reach its (sorry, don't know if it was a boy or a girl) potential.

My first thought was how will we be able to afford this?

Let me address that issue of cost and affordability a bit later. First, I just want to talk more about the title of this post by saying that therapies are crucial for our children, starting as soon as possible. I'm not saying that people who have not pursued therapies or been offered therapies by their states/counties/municipalities have missed any sort of boat here, but I do just want to say how sad it is to hear, over and over again, that their states/counties/municipalities seem to think that therapies aren't important for new babies. (I'm a firm believer that when they say this, they're actually just saying they don't want to pay for it.)

The two therapies that are so valuable from birth are physical therapy (PT) and speech therapy (ST). So many times parents are told that their children don't need either of those, ST in particular, until they're older. Until they're at an age when they may be getting ready to walk. Until they're at an age when they may be getting ready to talk. Really? They would honestly deny a child the tools needed to get them to that point?

Yep.

So for any of you who have been told that, denied services for your baby, please know that there is so much that needs to be done, so much that can be done from the very beginning, starting with oral motor therapy to strengthen the muscles of the mouth and tongue, exercises to build neck and core strength, coordination and attention span.

I know we were fortunate to have been offered all of this right off the bat, each for an hour a week from our county's Early Intervention. We were on a sliding scale fee, assisted by my health insurance. When Samantha started school at 2 years, 3 months old, the therapies were given in-school, but because I had good health insurance, we retained her ST & PT privately as well, to supplement. We didn't know at that point that Samantha was eligible for Medicaid, which would have picked up the cost of her therapy privately (with therapists that accept Medicaid, of course) anyway, if her pediatrician were to state that it was needed. When she was 3, we discovered that Medicaid eligibility was based on Samantha's income, not ours, and we quickly signed her up and got her on a wait list for a therapy center nearby that accepted it. She now has an hour of PT and an hour of ST privately each week, covered in-full by a combination of my health insurance and Medicaid. She also receives PT, ST and OT (occupational therapy - another important one, but one that PTs will often work on during a baby's early months) each week at school. The only thing I'd want to "throw at" her would be private OT, but Samantha's fine motor skills are pretty strong, and I'm pleased with what she's been doing at school and working on with her school OT and resource teachers.

Even if you are not offered therapy from your state/county/municipality, even if your health insurance does not cover it, even if you cannot get Medicaid for your child, I ask that you still pursue therapy, even as provided by you, yourself. Woodbine House publishing has some excellent books, including Gross Motor Skills for Children with Down Syndrome and Early Communicatgion Skills for Children with Down Syndrome. Going hand-in-hand with my post from yesterday, remember that you, as the parent, are ultimately responsible for maintaining your child's growth and development. Remember that you, as the parent, know your child best, and are the ultimate director of your child's growth and development, whether with therapists at school, privately, or at home. Stand up and advocate for your children, hold your ground and provide valid, compelling reasons to argue against those that will tell you "no." Fight for what your child needs, and be prepared to provide it yourself if necessary.

Day 27: Believing In Yourselves (Revised)

2011-10-27T08:05:00.030-04:00

In my brief and fleeting moment of blog-reading at work yesterday, hunched over my overflowing desk while scarfing down a slice of pizza for lunch left over from an earlier meeting (not mine), I came across some interesting , insightful information on We Can Do All Things. It was reprinted from a forum by Dr. James MacDonald, and is about empowering parents to stay in control of their child's development, and to help to educate the professionals about their child. It's quite good, and there are many parts of it that I think parents should bear in mind.

Now before I post what he'd written, let me just say that I originally posted this (this is a revised version) thinking that Dr. MacDonald was a minister, and his website was pretty heavily religion-based. Of course that kind of thing generally has me running in the opposite direction, pretty much as fast as my out-of-shape legs can carry me, but to be honest, there was nothing in this writing that referenced religion, nor did it imply faith in anyone but yourselves as parents of children with a disability or delay. However, I, having looked at the wrong James MacDonald website (hehehehe), have now been set straight by Sandy, who'd posted it yesterday, and I see that the Dr. James MacDonald who wrote what's below is not the James MacDonald, minister. LOL The right Dr. MacDonald has a fantastic website called Communicating Partners which, I, now that I've looked at it, will now implore you to all take a look at, as it focuses on being parental partners with therapists, etc. for our children with Ds or Autism.

Ah, that's what I get for doing a random web search, right? But whew, I feel much better now. :-)

I was initially blown away by it, but as I read it a little bit more closely, I became a bit concerned that it gave some negative blanket statements and implied that the professionals we have working with our children are, to put it simply, bad. Which is defiinitely not always the case, and I'm a little worried that this could put some parents on the defensive with these important partners in their child's development, when there really still needs to be an element of trust. But if you can look past those statements and implications, I loved that it puts power into the parents to be the primary teachers and guides through our children's lives. We can't expect that our kids will learn everything from others. And that, is most definitely true, and a very important lesson to remember. Your thoughts?

Here's the post:

Believe in yourself more than professionals!

I say further that you need to do what evaluators only rarely do--and that is focus on what the child can do.

Professionals often seem to think that to justify their job they need
to identify all kinds of mistakes your child makes.

I claim that your child does not make mistakes, they are developmental growth steps.

Professionals would go much further with our children if they would take a developmental approach by identifying what the child can do and have him do more of that.

Stop putting yourself down because you have a child doing less than same-aged peers.

That does not make him wrong, and it does not make you wrong. How often do you feel wrong when someone accuses your child of being wrong???

Don't be blown away by negative evaluations any more than
if someone said you have the wrong kind of car, or dress or house.

Be proud of what you have done for yourself. That will help your child be proud of what he can do.

If he is not proud, he will do less and believe less in himself.

Realize your child is learning from you all the time and he is learning much more than what you say or try to teach him, he learns how to believe and think by watching you.

STOP BELIEVING PROFESSIONALS KNOW MORE THAN YOU DO ABOUT YOUR CHILD.

THEY DO NOT.

In fact they cannot know who your child is and what he does and can do unless they watch him with you and get a thorough report on what he does at home.

Also, professionals are usually asking the wrong questions.

They seldom know much about early development and what children need to do before they're in school.

Skills such as social play, imitation, turntaking, deliberate communication, initiating, responding, listening, and many others are seldom evaluated and yet they are the keys to learning and communicating.

Realize that you often buy into a system that is keeping your child down. Start seeing how and when you are doing that, such as when you push your child to do things he is not ready for, or making him avoid you and others by acting in ways he cannot try to do.

Be more focused on what your child can do and get him to do it more. At the same time, focus on what you do when he is performing well - keep doing it.

Be sure he is your partner more than your student.

Begin to be convinced the your child is your responsibility much more than the 5-26 professional who will flit by him and see only pieces of his real development.

And ask yourself: WHOSE CHILD IS HE OR SHE ANYWAY?

We often act as though our children belong to the professionals and we give them away. Please do not give your child to people who focus on the negative!

Why do you think I have focused my 37 years of work on parents? They - you - are the answer.

Dr. J

Day 26: Remembering...Our First Ds Event

2011-10-26T08:13:00.000-04:00

Below is a photo of Sammi at 6 months old (look at that RED hair!!!). We were at our first Down Syndrome Association event, the December 2006 Holiday Party, and, like most people new to the larger, more universal Ds "family," we were a little bit shell-shocked. But also comforted. Here we were, in a huge room, a high school cafeteria, full to the brim with people we'd never met - children, teens and adults we were looking to for answers and inspiration.

I quickly sought out my Parent to Parent mentor and her family, as her daughter was much older than Samantha, a little girl in elementary school. It felt good to know that there was someone there that I could connect with, at least initially, until we could settle in in the best way we knew how.

The thing that struck me most that day was how kids acted like kids. When a group of children, some with Down syndrome, some siblings without, gathered around Samantha to ooh and ahh over the baby, we realized that the differences were fewer than we had expected. Nowhere were the bowl cuts of old (yes, I'm still going on about that - it was a big deal for me!!), people were happy and enjoying themselves, and we saw people with a range of abilities, just like in any "typical" population. We were glad we went.

We ended up really enjoying ourselves, and Samantha got her very first visit to Santa's lap (she couldn't get enough of his beard!), but I know that those first events aren't so easy for everyone. Some friends later revealed to us that they, too, had gone to that holiday party, but after pulling into the parking lot in front of the school, balked and returned home without ever stepping foot over the threshold. And that's okay. It happens. You're ready when you're ready.

That darned bib (and about 100 others in our arsenal) was pretty much a constant fashion accessory for Samantha, given her astounding ability to barf at any given moment. I shudder to remember just how many disgusting, soaking pieces of cloth and changes of clothing we'd go through in a day. Yuck.

Again, pre-DSLR, pre-Photoshop... And yes, I am showing you some of my favorite old photos of her, but don't worry, I'll show you some of the squidgier ones, too...stay tuned...

Day 25: MaterniT21

2011-10-25T08:07:00.000-04:00

Really, I don't have much of anything today. Whew! Coming so close to the end! I know the focus should be on topics about Down syndrome this month, but I've had to stray from time to time. I'd love to go into my thoughts on the new prenatal test for Ds, but I think I just don't have the time to give it any real thought today.

Oh, what the heck.

Marketing.

That's what it boils down to. Marketing. It's not so much that the test exists, but it's whether or not it's being presented in a positive or negative light. I honestly haven't read too much about it, and don't want to be accused of being one of those people who is voicing a big opinion based on hearsay, but just the name of the test itself is leaving a really bad taste in my mouth.

MaterniT21.

Oh, lord, how awful! It's targeting, directly, Down syndrome, right there in the title (is that seriously what it's called? I've been too chicken to read most of the articles about it...). And just the word maternity, implies the warm, fuzzy feeling of motherhood, of maternal instincts. It's like seeing a big round sign with a picture of 3 chromosomes in it, with a great big red slash through the middle. No T21. And while they'll probably all say that it's ostensibly to help people prepare for a child with a diagnosis of Down syndrome, we all know what it's really about...to let people know that they can pursue termination of the pregnancy.

Termination.

I know not all pregnant women would do that - there are still those who value the life they're bringing into the world, but with a current statistic of approximately 90% of prenatally diagnosed T21 pregnancies ending in termination, there's the absolute guarantee that that number will increase to nearly 95-98%. Or more.

I'm heartsick. To think of all the amazing, positive strides that have been made in the last 20 years to make the world a better place for our chromosomally-enhanced children to grow up in, to make them more accepted and visible, what happens when they cease to exist? Will they suddenly become pariahs? Be looked down upon as the ones that were unfortunate enough to have been born, having been born before that miracle test?

Oh, poor dears, and their poor, poor families. So unlucky...

I don't want us to be taking steps in the wrong direction, but I feel a shift is coming. We'll have to fight harder to be seen and heard. To let people know that our children have a right to be here, to be part of society. I think it's going to be more important than ever to get to the medical professionals and educate them - the OBs, the GYNs, the geneticists and reproductive endocrinologists, the midwives... We've got to help teach them how to give full information to their patients, not just to give them the easy way out.

Ugh, too much to say about this. I'll end with that. I'm frustrated. I hope...just hope... that people are smarter than this. But I think I know better.

(Okay, here's a random old photo of Samantha, taken when she was about 8 months old)

Day 24: Q&A Part IV

2011-10-24T08:10:00.001-04:00

I think this is the last Q&A for this round! Thank you all again. And as other questions come up (please feel free to ask them!!), I will answer them in future posts. This has been so much fun! (Samantha looks like she's enjoyed it immensely, too...) Oh, and to Pallavi, I love the idea of posting an old pic of Samantha per day, but it may not be quite with that frequency...the old pics are on a different computer than I use regularly, and I'll have to hunt them down. But I will certainly try every now and then!! Thanks! :-)
Q. Would you mind sharing a few of your most frustrating moments related to Raising a little one with Down Syndrome? Have you found youve mellowed with time or become more sensitive?

A. Frustrating, huh? Well, that's a very interesting question that I've been thinking a lot about. It's really tough, because I feel that with only one child, I'm not really qualified to differentiate between the general frustrations of raising a child, any child, vs. raising a child with Down syndrome. There haven't really been things that I would say are frustrating moments that are specific to Ds, but I will say that her first two years of reflux were very frustrating. We were never able to baby-wear, for fear of being covered in vomit at any given moment. I guess if I were to tie that in to Ds, I'd say that her immature digestive system would be to blame. Another frustration would be her unwillingness to chew for the first two years, and the extreme liklihood of her choking if we weren't extra-vigilant. But those are kind of physical, tangible frustrations. I think you probably mean more big-picture stuff. But to be perfectly honest, other than the general worries that we'll always have about her social acceptance and future independence, all the issues are just general child-raising stuff. Oh, yeah, and one more thing...her amazing, astounding ability to be as stubborn as a mule is sooooo frustrating!! Sheesh, that kid can cross her arms and pout like no other...

In answer to the second part of the question, I would definitely say I've mellowed over time. During Samantha's first year, I was so hyper-sensitive to the fact that she had Down syndrome, I would try to bring it up in just about every conversation I had with just about anybody, including strangers at the store, strangers at the park, you name it. Part of me just wanted to talk. Part of (irrationally) thought that people would think I didn't know my kid had Ds. Yeah, weird, I know, but I felt like I needed to acknowledge it, especially since my general disposition with her was so happy and positive. I guess I figured others would assume that because I wasn't moping or miserable, I must not know. Hehehehe, yeah, whatever. After that first year, it all clicked, and I figured if people knew, they knew. If they didn't, they didn't, and far be it for me to enlighten them. It didn't matter - she was my baby first. Sometimes people who had their own connection to the special needs community would approach me or start up conversation (which I certainly welcomed!), but usually nobody ever said anything, and treated us like any other mother and baby. As time went on, the only times I ever really got bothered or frustrated (oh, sorry, this could have been added to the first part of the question!) by Sammi having Ds were when we would attend gatherings or birthday parties of "typical" children. The differences were so in-your-face, and I couldn't help comparing them and getting pretty upset. I'm sure you've all been there in some capacity. That, too, has lessened considerably over time. I still notice it, but am not so affected by it. My first concern is whether Sammi is happy and enjoying herself, not the things that makes her different from her peers.

Okay, that's it for now! And tomorrow, my thoughts on MaterniT21... (you know where that post will be going...)

Day 23: Better Late Than Never

2011-10-23T17:38:00.002-04:00

We hit the local pumpkin patch/bouncy castle place yesterday. What is it with this phenomenon of bouncy castles accompanying the selling of pumpkins? I don't think I'd ever seen it before we moved here, but it may just be that we'd never seen it before because we didn't have a child that it would apply to.

Samantha picked out two pumpkins, between crying fits. All was fine until someone bounced on her, of course, then once she'd pulled herself together from that and allowed herself to have fun again, running back and forth through corrugated plastic tunnels, some over-enthusiastic children began to scream their excitement as loud as they could, the sound echoing and amplifying through the enclosure. Poor, sensitive little Sammi just stood outside the tunnel bawling her eyes out until I could pick her up and get her out of earshot.

Here she is going down a bouncy slide on her stomach. I just would like to point out the beautiful new grown-up teeth that are almost all the way in at the bottom front! I'm pretty excited about the fact that my brave girl has now lost two teeth, and had two new ones come in, all without spending more than a week or two with any sort of gap. Let's see if we're as lucky with the next batch.

By the way, does anyone know if teeth will ordinarily fall out in the same order they grew in? So far we're on that schedule, but who knows what's next?

Day 22: Some Stuff for Saturday

2011-10-22T13:56:00.000-04:00

I'll keep this brief today (say it isn't so!!!)

Thank you to Deb, over at Four Blessings of Mine for featuring me in her Blogger Showcase today! I'm thrilled to have been asked. Please visit her blog, and feel free to leave a comment!

And thank you to everyone who visited me in the Blog Hop yesterday - that was a lot of fun (once I actually got a chance to spend a little bit of time on the computer), and I found some great new blogs and got some new visitors to mine! Raising awareness, spreading the word, making new friends...that's what it's all about! Oh, and showing off our awesome kids, too... :-) Thank you to Erin at Crazy Beautiful Love for organizing!

Not sure what I'll be posting tomorrow yet, but the Q&A will continue on Monday. By the way, Katey in South Africa - please e-mail me at bateminx@yahoo.com, and I'll put you in touch with our Parent to Parent coordinator who may be able to help you and your organization with some ideas for a similar program to reach out to new parents.

Btw, just got a Toshiba Thrive tablet. Can anyone recommend some great, fun, educational apps for Samantha? It's on the Android platform. On my phone I've been restricting myself to the free apps (since the screen space is so limiting, why waste the money?), but with the tablet, I'm definitely inclined to spend a few bucks to get something good from time to time.

Day 21: Blog Hop & Q&A Part III

2011-10-21T10:40:00.000-04:00

It's Blog Hop Day!! The 21st day of Down Syndrome Awareness Month. If you have joined the Hop, please visit Erin's post for the rules and the prizes! Please visit the blogs of the others involved in the hop by clicking the links at the end of this post!

I'm continuing the Q&A session today with another question, but will continue on Monday, as there's still more. :-)
Q. Becca I thought about this all day, and I'd like to ask you to (re?) post a little about Sammi's early years - some history and baby photos and things so we can all see if she's always been as beautiful as she is today (I feel I may know the answer already :))

A. Oh, gosh, this kid has definitely always been beautiful, if I must say so myself... Hope that doesn't sound obnoxious, but wow, she's always just taken my breath away!  History-wise, Samantha was always a very, very easy baby/child.  Even with the heart condition that required open heart surgery at 4 months old, she was and still is very healthy, which actually surprises me, considering her limited palate that does not include vegetables. We have always had her on a multi-vitamin, which eases our minds a lot, knowing that if she's not going to eat something healthy, at least she'll get some vitamins and minerals from somewhere!

Sammi didn't really chew anything until she was nearly 2, so we kept her on 2 bottles of formula a day until then, to ensure that she got what she needed for nutrition, supplementing Stage-whatever foods. Finally, she got with the program, and we were able to introduct more. I say this, just so those of you who debate the formula/bottle thing will know that kids won't be ruined for life if they're on it for that long - that's why formulas come in that up-to-24-months variety. :-)

We got her on a sleep schedule almost immediately, something I'm really, really passionate about.  I can never understand people who don't work hard on that - it will be the best thing you ever did, trust me.

Samantha became a world traveller at 9 months old, when we went to visit her Grandparents and aunts and uncles in England for a week. She did great on the plane and on long car rides. She went to England again just before she turned 4, and again, she did really well, even though she was coming off a bout of strep and an ear infection.

She started school at age 2 years, 3 months, and did great. Now, 3 years later, she is in full-inclusion Kindergarten, and we couldn't be happier with her progress!

Ummmm...let's see...not really sure what else to include history-wise, but below are some early pics (pre-DSLR, pre-Photoshop - forgive me!). Enjoy!

At 3 months old.

In England, at 9 months old.

At 11 months old. It bears noting that this photo appeared in the April 2008 issue of Parents Magazine. :-)

At 1 year old.

Again, at 1 year old. Self-feeding for the very first time!

Our very first Buddy Walk, at @1 1/2 years old.

At 21 months old, having just begun to walk full-time.

@2 years old.

And for those of you who wanted to know what kinds of hair bands and hair clips I use in Samantha's hair that don't pull her hair out (too much)? Uh, can't help you there. I totally have to go by feel when I'm in the store looking for them. They're by Goody, but Goody makes, like, 100,000 different hair bands. And some of them look exactly like the ones I like, but aren't. quite. right. The ones I get are almost like those loops that you put on the children's looms to make potholders - they're regular hair band size, but they're softer and stretchier than others. I think they're item #32819 (Gentle Ponytailers) on their website, and the barettes are item #32144 (Bright Snap Clips, although they come out in different colors every season so the style number may change). I like clips with the rubberized coating, but the coating always winds up peeling off eventually, plus they tend to slide in her hair a lot more. Their website sucks, so good luck navigating it.

Day 20: Parent-to-Parent

2011-10-20T08:05:00.001-04:00

(The Q&A will continue soon...the last two remaining questions were doozies, and I'll need to give them a bit more time and thought to write!)

When Samantha was born, we were fortunate to have received support and information right off the bat from the hospital. A social worker came to visit us and brought a folder of leaflets, and while my memory of that visit is pretty much nonexistent (I'm sure none of you are surprised!), I was very relieved to have what was brought. One of those leaflets was from DSANV, and my eyes zeroed in immediately on the name and phone number of the Parent-to-Parent contact there. I think it was only within a matter of days after Sammi's birth that I called and spoke to H., who is now a great friend, and H., in turn, put me in touch with another parent volunteer in my town whose daughter with Ds also had a heart condition. I had so many questions and remember how helpful it was to actually get to speak to people who'd been there and knew what I was going through, people who just listened to me as I unloaded what I needed to unload, asked what I needed to ask.

I became passionate about new parent outreach, and was thrilled to join the Parent-to-Parent team, going through several training programs, when Samantha was only a year or so old. Paying it forward, in a way, but more importantly, providing a much-needed service that I wish was available everywhere.

Sadly, it's not.

Time and time again, I hear tales of new parents of babies with Ds who get no information from the hospital, who have no idea what their resources and supports are. They're left dangling in a sea of negativity on all sides, not sure how to love and care for their children, not sure what to think about their chances of any kind of future. It's such a shame, makes me really sad.

How many of you have Parent-to-Parent programs within your Down syndrome associations? How many of you actually reached out to or were contacted by them? How many of you would like to see these kinds of programs brought into your area? I'll tell ya, ours is a GREAT one, and I'm proud to be a volunteer. I have made some amazing friendships through my contacts as well.

I'm not sure where I'm going with this post, other than to bring attention to the Parent to Parent concept, and to share my experience. I'd love to hear yours, too.

Don't forget tomorrow's Blog Hop! Please join the linky below!

Day 19: About Reading... (Q&A Part II)

2011-10-19T08:12:00.001-04:00

Q. LOVED the video of Sammi reading. So what are the things you did with her early on to help her get to be a good Kindergarten reader? Help those of us with the little babies!

A. About that reading…

First a couple of disclaimers – Remember – don’t compare! Children will learn their own way, in their own time. Also, just because a child may not have strong verbal skills doesn’t mean they can’t learn to read. I have seen videos of children learning to read and using signs to show that they know the word on the page.

I was a fairly early reader, being only one of a small handful of children in my Kindergarten class who could read. I have very specific memories of sitting at my little desk, a copy of Tip and Mitten open in front of me. I think Tip and Mitten was my generation’s answer to Dick and Jane. Now, I think Biscuit, many generations later, is the current incarnation. After Samantha was born, I had fantasies of her being able to read by Kindergarten. After all, her mommy did, right? No problem. Hahaha… Reminded me of the time the Early Intervention people came to visit us for the first time, when Samantha was about a month old – they’d asked me what our PT goals for her were in the first year, and I immediately said I wanted her to be able to walk by 1. Okay, so I was a bit off…and perhaps a bit delusional…

I had mentioned in my last Q&A post that Samantha had stopped learning new words by @15 months old. At 18 months we realized that we needed to “bridge the gap” of communication until she started to pick up new words again, and began to introduce signs. I remember like it was yesterday, standing in front of a shelf at Borders (sigh), trying to decide which kind of baby signs materials I should buy to teach both us and Samantha. After a lot of deliberation, I settled on the ones shown in the picture above. I don’t think I realized at the time just how important this box of cards would be for her over the next 4 years. To say they’ve been loved and used and abused is a definite understatement. You can see the state they’re in, even if you can’t see that the box has been broken and re-taped a dozen times. I finally just gave up. Anyway, these cards were important in several ways. The front shows a photo of an item or an action, with the word written in large letters above. The back shows the word written again, with a photo of a woman demonstrating how to create the sign. We, as parents, learned how to make the sign and model it for Samantha. Samantha would learn to make the sign when she saw the picture on the front of the card. The next stage involved Samantha using the pictures to learn to say the words, as we held them up one by one. Once she learned her letters, she used the cards to say each letter in the word then say the word, as if she were reading it (C-A-T…cat!) Now, at this stage, so many years later, I have been turning the cards over and putting my hand over the photo of the woman doing the sign and Samantha has been trying to read the words, with increased success.

And that's where it really started. Last year, The Learning Program was introduced in our area, sponsored by our local Down syndrome association. The Learning Program is based on a program developed by the Down Syndrome Foundation of Orange County (DSFOC), and focuses on the visual learner, as most children with Down syndrome are. The parent is taught to teach the child, providing materials that keep the child engaged while learning. Materials are available on DSFOC's Learning Program website to download for free. The Learning Program itself is only offered in a small handful of regions across the country, and we're lucky enough to have it here.

We missed the enrollment deadline last year, but happened to be approached by Terry Brown, one of the people involved in the Orange County program, who now runs So Happy To Learn from her house, teaching students with Down syndrome to read, write, do math, etc. She asked us to help her pilot a sort-of correspondence version of her program, via e-mail. As I am of the opinion that we should throw as many tools as we are able to at our kids in their education and development, so I jumped at the chance. I can only say that what we learned from her was invaluable. While we have enrolled in The Learning Program this year, we are also continuing to learn from Mrs. Brown as well. As not everyone has this opportunity, I ask you all, if you have not yet already, please look into those Orange County Learning Program materials, and go out and get Teaching Reading to Children With Down Syndrome, a Woodbine House publication by Patricia Oelwein!

But first things first - for those of you with younger children, my advice is flashcardsflashcardsflashcards. Any type, multiple types! Kids may respond better to one style or type over another. Sammi learned her alphabet and her numbers from the cards I posted about here, but trust me, we have plenty of cards she isn't afraid to turn her nose up at. That's why it's so good to get several kinds - you never know what it is that will appeal to them - could be a color, a character, a size, a texture...

I hope this helped answer the question about reading!

The rest of the Q&A will be in the next post (oh, so many great questions!).

And just in case you'd forgotten, I'm helping Erin at Crazy Beautiful Love host a Blog Hop this Friday, October 21st for Down syndrome awareness. Please join below and check out the bottom of yesterday's post for instructions!

Day 18: 3rd and Final Buddy Walk of the Season

2011-10-18T08:11:00.003-04:00

(Q&A will continue tomorrow...in the meantime, please read down to the bottom of this post for a fun Blog Hop for Ds awareness on 10/21!)

Steve's nose is a bit out of joint. If you're not familiar with that term, it means to be upset or irritated, especially when displaced by someone. He claims that no fewer than 4 people came up to him at our Buddy Walk on Saturday and said, "Oh, you're Rebecca's husband, right?" He has ceased to be Steve anymore, and now needs to get comfortable with his new designation, I think. But he should be used to it already - he's usually Samantha's dad, just as I am usually Samantha's mom. Actually, with that addition, I think it gives him even more identity, right? Or doesn't it work that way...?

Saturday was perfect. Perfect day, perfect company, just...perfect. Thank you to everyone who donated to DSANV through our team, Sweet Pea United, and thank you to our friends that joined the team and walked with us! Trust me, this organization has been very good to us and to so many others, and that money goes to a great cause.

I was so happy to get to meet some of my awesome blog friends (Megan, Crittle, Tricia, Brooke, Denise) IRL, which was a real treat! Especially when it was completely unexpected in two of those cases! Ah, if only we had more time...

Samantha rose to the occasion, enjoying herself immensely, pushing through sleepy-time like a pro, then yapping the whole. ride. home. Not sure how she did it - I was ready to drop!

Grand-Marshall-and-icon-to-children-with-Ds Rachel Coleman (in the gold jacket, to the left) leads off the pack. She performed later, and I dragged Samantha down to the stage, hoping she'd want to dance, but she wanted nothing to do with it. Frankly, I was a wee bit jealous, watching the sea of children and their parents dancing and signing along to the songs, while I was completely clueless (see my post the other day about why Sammi doesn't know Signing Time).

And the crowd surges ahead... I felt like I couldn't adequately convey just how many people were there! I wonder what the final count was, but I think we've usually averaged @2,000. Given the weather, certainly that number was higher...?

Our cool yellow sign post for hitting (and then exceeding!) the $2,000 mark.

It was a day of educators. Joining us on the walk were Samantha's teacher from the private preschool she went to last year (pictured below - we LOVE Miss Katie!!!) and her Assistant Principal from the public school she'd been in for the last 2 1/2 years. Both said they had an amazing time, which really means a lot to me. I know that getting educators involved in Down syndrome awareness is hugely important - these are people that are perfectly set up to make huge differences in our children's lives, and these two in particular certainly already have.

Also at the walk, having joined other teams, were Samantha's private speech therapist and her current Assistant Principal! Sooooo glad to see so much support from all sides. :-)

Yep, that's Dora on that horse! There was some serious character weirdness going on that day, starting with Elmo's broken eye and skinny, matted, cracked-out self, then Spider Man's need for a little girdle (although he was soooo nice - he picked Samantha up and was talking to her, and even directed us to where Dora was), then Dora riding a horse. Hmmmm...whatever.

The day ended with Samantha getting up on the stage and dancing. Seriously, this child should have been nearly unconscioius by that time, but she was like the Energizer Bunny, all set to keep on partying!

Looking forward to next year already!!

Oh! And one more thing! Erin, at Crazy Beautiful Love, has come up with a brilliant plan to help raise awareness on October 21st, and I have agreed to be a host. Sounds like fun!! See below:

Copied from her blog post...(because I certainly couldn't come up with this on my own!!!)

Hoppin' for 21 "rules":

1. You need to be a blog owner. The blog does not have to be a special needs blog. You only need a desire to promote awareness for Down syndrome. (Scroll down to see how those that do not blog can participate too!)

2. Link your blog up below. You can begin linking up immediately. You must be linked below to be eligible for the giveaways! (see below)

3. On the day of the hop (10/21), visit as many blog hop participants as you possibly can!

4. Leave a comment letting that site know you found them from the Hop and you appreciate them supporting awareness of Down syndrome.

5. (Optional) If you see a site you like, become a follower! Make sure you let them know you are a new follower and they just might follow you back.

6. (Optional) Mention somewhere in a post on the 21st that you are supporting Down Syndrome Awareness month by participating in the hop. I will provide a thumbnail for those that want to share it with others!

7. (Optional) Drop by each site of those hosting the hop and say HI! Let them know you appreciate them hosting!

8. (Optional) Help us promote the hop! Mention it in posts, on facebook, twitter and provide a link back to the hop link page. The more people that participate, the more people become aware of the beautiful designer gene world of Down Syndrome.

Giveaways:

Every participant (excluding the hosts) will be entered in a random selection giveaway. Right now we have two prizes and I hoping for one more donation. You only need to participate and follow the "rules" to be eligible.

1. $10 Walmart Giftcard

2. Lily Bloom lunchbag

3. (Facebook giveaway)

Facebook:

So, you don't blog huh? That's okay! You can help spread awareness too!

An event has been set up on Facebook for those wanting to participate. Just go here to see how.... Hoppin' for 21 on Facebook. Those who take part in the Facebook event will be entered into their very own giveaway for a $10 Target Giftcard. The basic idea is that you join the facebook event and follow the event "rules". The rules involve you posting a status on 10/21 stating that you are participating in the Hoppin' for 21 event to support Down Syndrome awareness and provide a link back to the Hoppin' for 21 on Facebook event page. That's it. Simple. Plus, don't forget you do not have to be a blog owner to read blog posts and leave comments!

Questions about the hop? Send them to info@crazybeautifullove.com and she'll get back to you as soon as she can.

The Hop starts at 12:00am on Friday October 21st and ends at midnight!

Day 17: My First Q&A! (Part I)

2011-10-17T08:36:00.001-04:00

I'm so excited to be posting my first Q&A! Thank you to everyone who left questions for me on Friday's post. I had to do some serious thinking about some of them, too. I'm going to have to break this into two posts, seeing as I'm rather long-winded in my answers...

It was a little bit of a problem that I'd disabled the right-click function in Blogger, though, as I couldn't then copy the questions directly into this post, but eh, I'll get over it. Gotta love alt-tab.

Q. How did you grow out Sammi's hair so gorgeously? Were you ever tempted to cut it? Did she resist the clips and holders and stuff?

A. Sammi's hair is really a story of how my resistance to a preconceived notion of mine about Ds just got out of control. I had wondered, when she was born, if kids with Ds had to have that institutional bowl cut that it seemed I saw in my memory bank of old photos. I thought if I could have her hair long and natural, I could smash that particular stereotype and ensure she'd have a more "normal" childhood or something. So I just never cut it. Ever. Not even a trim. Actually, when she was born, some of the OB's first words were, "Wow, I've never seen a white baby with that much hair!" I was never really tempted to cut it, although I do receive some pressure from time to time from other family members (thanks for the haircut scissors you brought over two weeks ago, Mom...I get the hint...LOL). Correction...I am now tempted to cut it a little bit to bring it back to her waistline. I asked her last week if she wanted me to cut her hair, and she said no and got upset. Oops! What have I done? Oh, about the clips and stuff...at about 3 months I had to use a single clip to keep her hair back off her forehead. Once she discovered that she could pull the clips out, which was a brief phase, I just had to be persistent and keep putting them back in. Eventually she was resigned to the idea that she had to live with them. I can only use very specific hairbands and clips in her hair because so many others get tangled or caught, and trust me, I have tried them all. It's just been a lot of trial and error. Sammi doesn't love having her hair done, but she's pretty good with it unless I'm trying to pull a hairband out of her hair from too close to her head. Ugh, I'd hate that, too! I usually do her hair while she's eating breakfast and watching TV in the living room in the mornings. I do miss being able to have her hair in pigtails or a pony tail instead of braids (having her hair down poses certain, uh, logistical issues when it comes to sitting on the toilet, and it also gets pretty tangled), but I also just love the braids, too! I think the day is coming, though, when I need to bite the bullet and take it all up a bit...

Q. When did Sammi start talking and did you start sight words (etc.) before she started talking? I think I've waited too long, %^&* linear thinking. I think we're just going to navigate around the speech & dive in visually. Your experience?

A. This is a great question, and I'll answer this before I get into the reading questions (next post). Sammi actually started talking (relatively) early, with her first spoken word @11 months (more). By 15 months she had about 15 spoken words and no signs (we'd never introduced them at that point), but then, while she kept those words, she stopped learning new ones. At 18 months we realized we needed to do something to bridge the gap until she started learning new words again, so we introduced a few signs, which really helped. At 21 months, when she started walking, her language began to take off again and we eventually dropped the signs soon afterwards. (Btw, this phenomenon is fairly typical of our kids with Ds...they lose traction in one developmental area while concentrating on mastering another, then explode with new skills once that other goal is met, like walking.) We didn't actually introduce sight words, other than the ones that accompanied the pictures on some baby-sign-language flashcards we had, until this past year (also to be discussed in my next post about reading). Please keep in mind that children don't need to be able to speak to be able to read. I saw some videos last year of children with Ds who were learning to read and using signs to communicate what they were reading. So sight words can be introduced at any time, with or without verbal skills. And it's never too late, either. Learning is an ongoing process. When asked by parents when they will know what their young child with Ds will be capable of, Samantha's geneticist tells them, "at the end of their life." You can never know what they'll be capable of - there is no time/age when learning new things just stops. They will always learn new things, provided the opportunities and tools.

Q. Have you thought on having another daughter/son??? :)

A. Omg, this was probably the hardest question of all!!!! Wow. We had only ever wanted one child to begin with. And when Sammi was born and for the first 3 years of her life, I felt like there was no way I could ever love another child as much as I love her, and I couldn't ever ask her to have to share love with another child. As she grew older and more mature, I knew that actually, she could handle that, and would probably love to have another child in the house, but financially, we're not in a position to have another child (through adoption), from the standpoints of having one of us stay home from work again, daycare costs, future costs, etc. Also, perhaps a bit selfishly, we're not prepared to have another child. Sammi's at a really easy age right now, and is just so much fun to do things with. We're enjoying so much the ages and stages she keeps growing into, and love not having to be distracted from any of it! Hope that made sense...

Q. hmmm. do you mind if I steal this idea?

A. Oh, of course!! I stole it from someone else, so hey, go for it! Maybe someone should write some sort of Blogger Code one day, something that outlines all the (previously) unwritten rules of blogging, including the one about it being perfectly fine to steal post ideas. Eh, nothing's sacred...

Okay, I've written quite enough for now. The rest of the questions will be answered in my next post (or the one after that), as I feel that they'll require a lot more room and time to answer.

2BContinued...

Day 16: Scary Sunday: Elmo Attacks!

2011-10-16T07:55:00.000-04:00

Some of you have already seen this unfortunate photo on Facebook that I posted yesterday. It's from our Buddy Walk (more on the event later). I can only say that Elmo is actually a lot scarier than he looks, and I think we should be schooling our children to realize that a creepy person in a straggly red fur costume is not the sweet little boy-monster who talks in first person and loves his fish, Dorothy. As a matter of fact, just adding to the creep-factor, Elmos with creepy people in them don't actually speak at all. And they make Elmo look dirty and super-skinny, kinda like Elmo with a brutal substance (read: crack) abuse problem.

And Elmo eats children.

There. I said it. And I have proof. Samantha nearly found herself in his clutches today, an unwitting victim, falling prey to the wolf in sheep's clothing. But her ever-vigilant mommy noticed something before it was too late for her, even if it was too late for his other victims...

Okay, I'll fess up, and you can all relax - it was just a very fleeting, random moment caught on camera, a perfect juxtaposition of foreground and background (quickly edited just so you could see it better). Really. You don't have to hide your children from Elmo, and he's not quite that scary. Okay, maybe he is...

Day 15: Myths and Truths About Down Syndrome

2011-10-15T09:08:00.001-04:00

Thank you to everyone that's left questions for me on my last post! Please keep them coming - I'll have my answers on Monday or Tuesday. They are very well thought-out questions (yes, even yours, Meriah!), and I'm really quite looking forward to it!

It's now the weekend and I haven't yet had a chance to write anything meaningful of my own. Today is our local Buddy Walk, so I'll be there while you read this, and will have a post later next week about it. In the meantime, here are some myths and truths about Down syndrome that I copied off of the NDSS website. I did not have permission to copy them here, but I think, with this disclaimer, it shouldn't be a problem. If it is, please let me know, and I'll pull this, or paraphrase instead. :-)

I know that most of us in the Ds community already know these truths, but for those of you who may not, I hope you'll learn something from it!

Myth: Down syndrome is a rare genetic disorder.
Truth: Down syndrome is the most commonly occurring genetic condition. One in every 691 live births is a child with Down syndrome, representing approximately 6,000 births per year in the United States alone. Today, more than 400,000 people in the United States have Down syndrome.

Myth: People with Down syndrome have a short life span.
Truth: Life expectancy for individuals with Down syndrome has increased dramatically in recent years, with the average life expectancy approaching that of peers without Down syndrome.

Myth: Most children with Down syndrome are born to older parents.
Truth: Most children with Down syndrome are born to women younger than 35 years old simply because younger women have more children. However, the incidence of births of children with Down syndrome increases with the age of the mother.

Myth: People with Down syndrome are severely “retarded.”
Truth: Most people with Down syndrome have IQs that fall in the mild to moderate range of intellectual disability (formerly known as “retardation”). Children with Down syndrome fully participate in public and private educational programs. Educators and researchers are still discovering the full educational potential of people with Down syndrome.

Myth: Most people with Down syndrome are institutionalized.
Truth: Today people with Down syndrome live at home with their families and are active participants in the educational, vocational, social, and recreational activities of the community. They are integrated into the regular education system and take part in sports, camping, music, art programs and all the other activities of their communities. People with Down syndrome are valued members of their families and their communities, contributing to society in a variety of ways.

Myth: Parents will not find community support in bringing up their child with Down syndrome.
Truth: In almost every community of the United States there are parent support groups and other community organizations directly involved in providing services to families of individuals with Down syndrome.

Myth: Children with Down syndrome must be placed in segregated special education programs.
Truth: Children with Down syndrome have been included in regular academic classrooms in schools across the country. In some instances they are integrated into specific courses, while in other situations students are fully included in the regular classroom for all subjects. The current trend in education is for full inclusion in the social and educational life of the community. Increasingly, individuals with Down syndrome graduate from high school with regular diplomas, participate in post-secondary academic and college experiences and, in some cases, receive college degrees.

Myth: Adults with Down syndrome are unemployable.
Truth: Businesses are seeking young adults with Down syndrome for a variety of positions. They are being employed in small- and medium-sized offices: by banks, corporations, nursing homes, hotels and restaurants. They work in the music and entertainment industry, in clerical positions, childcare, the sports field and in the computer industry. People with Down syndrome bring to their jobs enthusiasm, reliability and dedication.

Myth: People with Down syndrome are always happy.
Truth: People with Down syndrome have feelings just like everyone else in the population. They experience the full range of emotions. They respond to positive expressions of friendship and they are hurt and upset by inconsiderate behavior.

Myth: Adults with Down syndrome are unable to form close interpersonal relationships leading to marriage.
Truth: People with Down syndrome date, socialize, form ongoing relationships and marry.

Myth: Down syndrome can never be cured.
Truth: Research on Down syndrome is making great strides in identifying the genes on chromosome 21 that cause the characteristics of Down syndrome. Scientists now feel strongly that it will be possible to improve, correct or prevent many of the problems associated with Down syndrome in the future.

Day 14: Questions, Questions, Questions!

2011-10-14T08:34:00.001-04:00

I'm off to an all-day work conference today, so no time to post much. But I've noticed a few people opening their blogs up to questions about Down syndrome/our life/whatever from people this month, and I think it's a pretty great idea so I'm going to steal it right now. It could be great, or it could be ~~an embarrassing moment of silence~~ a colossal failure.

By the way, I do accept Anonymous comments on my blog, so feel free to ~~hide behind~~ utilize this feature and don't ~~make me look bad~~ hold back and ask, ask, ask away!

Day 13: Buddies at the Boardwalk

2011-10-13T08:04:00.000-04:00

In very stark contrast to the last Buddy Walk we attended, only a short week prior, Samantha and I found ourselves at the warm, sun-drenched Boardwalk in Ocean City, NJ, for the 21 Down Buddy Walk this past Sunday. 21 Down is the Down syndrome organization serving Atlantic, Cape May and southern Ocean counties, areas just east of where I grew up. It was odd, but I really felt at home with the people there, felt a sort of kinship with people so familiar to me, so similar to those I grew up with, but in the equally familiar context of how my life has changed over the last 5 years. Flashbacks throughout the day were fast and furious, and welcomed.

The group was larger than I'd expected, with probably about 500-600 people. It started out in a large indoor gymnasium, with a band playing music loud enough to bring any sensory-overloaded child to tears (surprising!), but fortunately there was a wide-open stadium attached where we could escape to feel the fresh air and listen to the sounds of the ocean on the other side of the parking lot.

Btw, I'm totally in love with this t-shirt!

It truly had to be the most beautiful day possible for the event. Samantha and I met up with some new friends from my home town, played in the sand on the beach, missed the actual walk (oops! I'll blame the joint lures of ocean and rides, both way too close to resist!), ate ice cream (why did I not know before that Kohr Brothers frozen custard is just about the best. possible. soft. serve. EVER? Puts Dairy Queen to shame...), and went on lots and lots of rides. Samantha has been hot and cold about rides over the years, sometimes enjoying them, sometimes crying, sometimes resistant to even trying them out. But Little Miss Adventure Pants was all. about. the. rides on Sunday, wanting more and more and more.

I'm pretty sure these are the exact same speckly, fiberglass cars I rode in when I was little. Gave me chills to realize that, seeing my own little one following so closely in my own footsteps, her little bottom sitting on the same seat my little bottom may have sat on oh-so-many-years ago...

And for the very first time, Mommy wasn't too chicken to let her ~~baby~~ big girl ride the carousel horse (the one that goes up and down, at that!) all by herself (instead of hovering next to her, keeping an unnecessary hand on her back), letting Mommy actually get to ride on her own horse and enjoy the ride as well. Wheeeeee!!!

One more Buddy Walk to go, this Saturday, when we attend our own local event. Our team pins from Zazzle have arrived, our fundraising goal has been met (see the thermometer in the side bar!), and I'm stalling this very moment from creating our new Team Sweet Pea United sign. Yeah, yeah, I'm gonna do it...maybe tomorrow night... *yawn*

Day 12: Stand For What You Believe! (alternately titled: OMG, it's POISON!!!!!)

2011-10-12T08:03:00.001-04:00

A quick housekeeping note - my sincerest apologies for going on day 4 or 5 of not having a chance to catch up on all the wonderful blogs I follow!! I feel a bit of an empty spot today for not knowing what you and your beautifully-enhanced (uh, that sounds a bit like we're genetically-engineering our kids...) children have been up to or what valuable tidbits of advice you've posted these last few days. While I love being busy, I don't like to be out of the loop for so long. Bear with me, I'll be back and catching up eventually!!!!

And, in the interest of time-saving skills at their best, rather than finish writing the dozen or so posts I've started in my queue (including my 2nd Buddy Walk of the season from this past Sunday), here's a quick, fun news story link for Down Syndrome Awareness Month.

For those of you who live in Florida, who may or may not live somewhere in the vicinity of Orlando, who may or may not be fans of the slightly hypochondriacal, ever entrepreneurial, rather loose, uber hot Brett Michaels, who may or may not be ready to ~~admit to~~ re-live their hair band days of yore, Poison are doing a concert to benefit the Down Syndrome Foundation of Florida on November 5th!! Click here for full information or to purchase tickets for the Stand For What You Believe concert. Not sure I want to pay $2,500 to have a hot dog with Brett (oh, so many things I could say here...), but a good cause is a good cause. How cool is that?

From the website:

Poison added this unscheduled and intimate concert after the end of their Reunion Tour - it is unlike anything they have ever done before!

VIP ticket holders will enjoy an after-party where the band members are going to serve up Nothin' But a Good Time at an exclusive BBQ on the John Lennon Terrace at the Hard Rock Live after the concert.

ONLY 43 tickets on sale to the public for VIP Experience!

CALL 407.222.7232 for VIP Package Sales

$1100 @ VIP Experience

VIP Reception

Reserved Table Seat in Lower Balcony

BBQ & After-Party with Poison

$2500 @ 'Like a Rock Star' Experience

VIP Reception

Personal invitation by Poison for exclusive viewing area for entire show

BBQ & After-Party with Poison

Mingle and have a burger or hot dog with POISON. This is the only time the band has ever held this kind of VIP event.

During the concert the band will auction off select items and a LIMITED number of VIP passes to their BBQ after party.

All proceeds of the concert will go to support the vision and mission of The Down Syndrome Foundation of Florida.

You don't want to miss Poison in Orlando!

Day 11: Little Miss Independent

2011-10-11T08:11:00.000-04:00

Oh, how bittersweet it is...

One of the things I (and I'm sure I'm not alone in this...) worried about when Samantha was born and we received her diagnosis of Down syndrome, was whether or not my child would ever grow up to be independent. Independence is such a grown-up concept, one that "typical" children start to assert and seek pretty early on, pushing harder as the teen years progress into adulthood. And then there comes the time when the young adult, suddenly realizing that they have a pretty good deal, living in their parent's basement, gets pushed out of the nest and forced into independence by parents, who have had enough.

I pictured a slack-jawed, blank-faced woman-child, holding my hand, shuffling just a little bit behind me, completely uninterested in our surroundings. I knew that independence was a myth, a distant dream, an impossibility.

Sure, my ignorance about Trisomy 21 gave way to every stereotype there ever was. And then I began to learn that those distant dreams may not be so distant after all.

I could go through all of the reasons why and how I figured out just how wrong I was, but here's a shining new example, a brilliant, beautiful, yet heartbreaking moment that showed me just what my little girl is made of.

She wanted to walk to school by herself.

Last Thursday, the moment we turned the corner and hit the sidewalk in front of the school, Sammi wanted nothing more to do with me. Not. A. Thing. She told me, in no uncertain terms, to stay put, stop walking, she would do it "all by myself!" I shadowed her along the walk, through the entrance, down the hall, keeping back far enough to satisfy her, as she oozed confidence and maturity, slipping into the sea of other students, one amongst many within the tide as they all pushed towards their classrooms when the first bell rang. Hovering outside her classroom door, I peeked in, unseen by her, and watched her take off her backpack, remove her folder from inside, and place it on the pile for the teacher. She caught a glimpse of me, but carried on, and, after letting one of her teachers know, I turned and walked home, a little sad, but still very proud.

I knew it would not be an isolated incident, knew the very next morning that she would not be limiting her independence to the sidewalk in front of the school, was prepared for what was to come next. The very next morning, the walk on her own began at our doorstep.

"Stop walking, Mommy! Wait your turn! I going to school all by myself!" Yep, that's what I got if she caught me tailing her. She didn't mind that I was behind her, she just didn't want to see me moving.

I have to say, though, that she walked an awful lot faster when she was on her own, much less distracted, so much more purposeful, confident, strong, independent.

And it was awesome.

Day 10: How to Get Your Kid to Eat Vegetables in 3 Easy Steps

2011-10-10T10:20:00.000-04:00

How to get your kid to eat vegetables in 3 easy steps:

1. Lament in your Facebook status that you have failed, yet again, to get her to eat vegetables (makeshift, baked zucchini fries = colossal failure)

2. Listen to your "friends" (real and virtual) who pipe in with advice.

3. Actually try one of their suggestions.

Oh, the wonderful, magical, undeniable power of Facebook! Nothing is TMI, nothing is taboo, nothing is too dumb/silly/simple/banal to make a status out of, and everything (okay, well, almost everything) garners countless comments from countless people whose names you may have heard before, whose faces you certainly have (most likely) never seen.

Thank you Cathleen (someone I actually do know IRL, btw...) for suggesting that I try letting Sammi cut her own veggies, giving her incentive to try her own creations!

So after her bath, and after she brought the step stool into the kitchen from the powder room, I brought out the vegetable dip and hummus...

...gave Samantha a butter knife, and let her work her aggressions out on half a zucchini.

And she ate some.

Day 9: Amazing Inspiration: Kelly Fitzgerald

2011-10-09T08:25:00.000-04:00

One of my big worries when Samantha was born (sheesh, have I actually started the beginning of just about every post this month with those words, or am I just dreaming it?) was how she would never have children, never go to college, never live on her own, never drive. Since then I've been so absorbed by the very few and far between stories of people with Down syndrome having children (very, very, very rare), living on their own (not as rare), getting their driver's licenses (also in that very, very very rare category). Actually, I'd swear (but wouldn't venture to bet money on it) that I saw someone in my town with Ds, driving a van. I could be sooooo wrong, just hoping against hope, but hey, who knows?

I found this video on someone's blog last week (I think it's been out for a while, so I'm a little late to this party), and am completely blown away. It's quite long, but if you even just watch the first 2 or 3 minutes, you'll get the picture. This woman is amazing, and truly inspirational. I like to think that anything's possible for Sammi and so many others with Down syndrome.

Day 8: What Do Your Cell Phone Photos Really Say About You?

2011-10-08T06:01:00.000-04:00

This isn't a post about Down syndrome this morning, and could be construed as a little bit of weekend filler, but certainly no less important when it comes to our kids and our own well-being.

Especially those of us with smart phones.

Watch this short video and be afraid. Be very, very afraid...

Day 7: In Search of Happy, Healthy Hearts

2011-10-07T08:06:00.000-04:00

Did you know...

Heart defects occur in 40-60% of children with Down syndrome?

Sounds pretty crazy, doesn't it?

60% of those defects are a Complete AV Canal Defect - AV canal is the tissue that forms the walls between the heart's atria (top chambers) and ventricles (bottom chambers). When this development is incomplete, the blood leaks backwards through the valves, and heart surgery is required relatively quickly, at 3-4 months in many cases, or earlier if the baby is in active heart failure. Usually it is preferred that the child reaches a certain weight first, before surgery, to help ensure that they will be strong enough to survive the procedure without complications. This is what Samantha had.
32% of defects are a Ventricular Septal Defect (VSD). This is an opening in the wall between the left and right ventricals, and usually causes a murmur. Some VSDs will close on their own, others will eventually require surgery.
6% of those with heart defects have Tetralogy of Fallot, a complex and very serious anomally that generally requires immediate surgical intervention.
Two others, each occurring as 1% of heart defects associated with Down syndrome, are Atrial Septal Defect (ASD) and Isolated Mitral Cleft.

When Samantha was born, not only did I know next to nothing about Down syndrome, struggling to digest that little revelation, but I was totally blind-sided by the visit from a cardiologist in my hospital room who came to drop the big, ugly, unbelievable bombshell on us that she would need open heart surgery in 3-6 months. No new mom really needs to hear that. No parent, period, really needs to hear that! I didn't even know that there were health issues that could be associated with Ds at all.

Got my first lesson that day.

And in the subsequent days to follow, I discovered how wonderful it was to have not received a prenatal diagnosis. As it was, I'd had a pretty nice walk-in-the-park of a pregnancy. No complications, no stress, no worries. Seriously, if I'd known all of that ahead of time, I think I would have hidden under my bed, a quivering blob of...uh...blobbiness, incapable of speech or rational thought. I stand in awe of those that can take and digest that information prior to the birth of their babies, who can arm themselves with knowledge and begin their advocacy bright and early. With the new prenatal testing that's out there, the world will need so many more of those of you who can use the information to prepare, not terminate.

And I exaggerate - I'm sure I would have managed just fine with early info, but I can say with so much certainty that ignorance truly can be bliss in some situations. :-)

Day 6: Biscuit Goes to School

2011-10-06T08:08:00.000-04:00

So, she did it again! After a week of reading her first Biscuit book that she got out of the school library, it was time to return it. I was a little bit sad because she had completely taken us by surprise by reading it out loud, cover to cover, after she'd had it read to her just once, but also quite excited as I wrote a quick note to her teachers to ask them to ensure that she got another Biscuit book from the library this week. And they were only too happy to comply.

Here she is, reading Biscuit Goes to School, her 2nd Biscuit book, after having it read to her only once or twice in the last 2 days. (She was also very tired and only 1/2 hour from bedtime, by the way.) Certainly, there's some element of memorization here, and context also plays a big role - she knows to expect certain words here. There's also recognition - she remembers that some of these words also appeared in the previous book, and she does recognize them here. But, and this is the part the makes me really excited, she also has begun to sound words out. You can see it some on this video, where she takes the sound of the first letter and tries to make it work with the others, within the context of the book.

Oh, and this is the last one I'll post, I promise...I'm just getting all of my mental jumping-up-and-down out, now that she's read 2 books on her own! The next book will be old hat, right?

Enjoy (especially her sweet little greeting to the camera halfway through!), and please ignore the awful, blood-curdling, bone-chilling tooth grinding that she does when she's tired. Ugh.