Thursday, September 30, 2010

Thursday Pics, Just Because

Since I missed Wordless Wednesday yesterday to celebrate Samantha's "heartiversary," here are a few (not so great - have I ever mentioned how much I hate flash-photography??) photos of my little rock and roll fashionista (note:  I used to have a pair of pvc pants just like these back in, oh, say, 1990) this morning as she headed off to Speech Therapy then school.

Wednesday, September 29, 2010

Happy, Healthy Heart Day, Baby Girl!

4 years ago today, I handed my sleepy, happily cooing, probably very hungry, nearly 4-month old girl over to two nurses and a gurney. We’d gotten up at the crack of dawn from our lumpy bed at Ronald McDonald House (a truly amazing place!) and headed over to CHOP (an even MORE truly amazing place!) where we waited for what seemed like hours in a room that was way too cold to justify the teeny tiny lightweight cotton hospital gown they made us put on her. I had asked for and received some towels or receiving blankets to put over her to protect her from a chill, ignoring my own chilly discomfort.

Just hours before, as we were getting her ready for bed, Samantha decided to grace us with her very first all-out belly laugh. Imagine the guilt we felt at that, knowing that it could be a very long time before we would see that again. Maybe somewhere in that baby brain of hers she would forever associate happy laughter with the pain and discomfort of impending surgery. The mind is a complicated thing, after all.

Our surgeon met with us briefly in his office to explain what he would do and what we could expect. Then he left us to trade his 3-piece suit for scrubs, a mask and gloves, his uniform for the delicate procedure ahead. I kept looking at his hands, thinking about how they would soon hold my daughter’s life in them. But we trusted him implicitly. He is, after all, one of the best in the world. Can’t do much better than that.

Then we waited. There wasn’t any wringing of hands or pacing – we knew we could only. just. wait. Ate breakfast, wandered the halls a bit, anything to keep busy. We got word from a nurse after only two hours that the surgery was over and the surgeon would come see us shortly. He said everything went very well, that Samantha was successfully taken off all of the machines, including her breathing tube. It wasn’t until more recently, when I’ve read the blogs and heard the stories of people whose children had to be weaned from that tube to breathe on their own, that I realized what a huge thing that was. Again, I was fascinated by the surgeon’s hands and what they had just done and what they had just held.

4 days later we came home with an oxygen tank that we were able to shed in just a few weeks. Again, it wasn’t until more recently that I realized what a HUGE thing it was, too, that we were able to come home so quickly. A perfect repair, with a slight residual murmur. No need for future repairs, no long-term medication, no restrictions on activity. Just our baby.

I’ve been seeing a lot of Happy Heart Days in the last week or so, announced via blog and Facebook. I love that so many people have this miraculous event to celebrate, to look back on as part of the distant past. To me it’s more of an early Thanksgiving. Thankful for my healthy girl, thankful for that joyful belly laugh that we hear every day.

Tuesday, September 28, 2010

The Resource Teacher

Ah, to think that I didn't even know what a resource teacher was before the new school year started!  I now know that a) they can be very valuable members of your child's educational team, and b) we're very lucky to have access to one while Samantha's in the private preschool two days a week.  My apologies with this post, as it's quite long.  I am incapable of telling a story in anything even resembling a condensed version.

I still feel a flutter of that old anxiety while merely writing this post after last week's uncertainties.  A feeling I don't want to have again, but I know we'll be faced with many times in the upcoming years. 

Just before the last school year ended, Samantha's teacher and Vice Principal called a brief IEP meeting to discuss their desire to have a resource teacher visit Samantha at her private school for 1 1/2 hours each day (or 3 hours per week).  I thought that sounded just fine.  I didn't know what the purpose would be, and I hoped that this person wouldn't pull Samantha out of the class for any reason (that would defeat the purpose of her being in this school!), but I knew we'd be able to meet with her and figure out the plan.

Steve met with her and since we did not have a schedule yet from the school detailing the school day, she winged it and came to the classroom at random times for the first few days.  And then I got an e-mail.

Not just any e-mail.  An e-mail from the school Director.  Requesting a meeting between us and the classroom teacher, to discuss Samantha's progress.  I know, and probably most of you know too, that this is a code word for Trouble.  I'd been almost expecting this.  Steve dropped Samantha off to school each day and picked her up each day, with nothing from the Director or teacher other than, "Oh, Sammi had a great day today!"  So we felt pretty blindsided.  I called the Director to have her clarify, hoping I was wrong and that a few words from her would make those very busy butterflies in my stomach go away, but she said they wanted to discuss Sammi's progress and placement (another code word).  Great.  So a meeting was set for the next morning.  Panicking, we called the resource teacher for some last-minute advice that night.  She gave us some very helpful information, helped us to stay calm.  The sensible people in us believed that finding the right timing for the resource teacher to visit the class to help with whatever the sticking points were would be the solution, but that sounded too easy, given the tone of the message from the school.  More likely it would be a case of the school not wanting her there, ready to give us the heave-ho.  Every possible scenario entered our thoughts.

We entered the meeting feeling pretty defensive, not smiling.  Steeling ourselves up for the inevitable, sure that this was the first real rejection we'd face for our daughter.

But it went much better than expected.  The teacher and the Director apologized for how they had come across the previous day.  Explained that their only concerns were during the three 20-minute group activity times during the day when Samantha, now comfortable with her environment, would wander away from the group and the teacher would have to continually fetch her, losing the other children to distraction in the meantime.  It was taking away from the academic focus of the group.  But Samantha was doing great in all of the other aspects of the school day.

Now why didn't they tell us that sooner?  The easy solution, the one we all agreed to very quickly, was that we would ask the resource teacher to come each day during the first two group times to help keep Samantha focused and on-track.  The Director or her assistant would come in for the 3rd group time, later in the day.  And that's exactly what was put into place the next day.  And it worked beautifully.  Below is the e-mail from the resource teacher right after she left the school on that first day of adjusted schedule implementation:   

Mr. & Mrs. Bates,

I did not have a chance to write out my weekly report today at Mxxxxxxxx so I wanted to let you know how it went today.  Today was very successful. During the first group time, I worked with Samantha and two other little girls on counting, sorting, adding, and subtracting with unifix cubes. The lesson that I was doing varied from Ms. Sxxxxx  but did accomplish the same goal. Outdoor time was wonderful as always. S rode the seesaw with other children, played tag with a sweet little girl (NOTE:  I think this is the same little girl that Samantha has become close friends with, in an adjoining classroom, according to the teacher's report to Steve when he picked her up from school that day), climbed the jungle gym, and hopped on a special Mrs. D chalk drawn hopscotch. Group time 2 was successful in the respect that S sat at the table through the entire lesson although she did not want to participate - which I was okay with. They put vinyl gloves on and prepared pumpkin seeds for baking. We watched!  Using picture symbols, verbal prompts, and a bit of sign language, Samantha followed all directions (yes all) and did what was expected and acted appropriately during my time in the classroom. She also spontaneously used the bathroom - with no help - which I know is one of her goals.  I requested a copy of the curriculum for next week which the director did give me prior to me leaving. I will work to prepare some adaptations for next week...although the schedule is not particularly detailed. We will get there!!!

I'm so proud of my little girl.  And so grateful to the resource teacher and to the public school system for providing Samantha with her services.  My girl is getting the guidance and education she needs.  My girl is making friends.  I can now feel the butterflies begin to slow their fluttering so I can breathe again.  I can now see a clearer path to Kindergarten next year.  I see learning.  I see hope.  I see a strong future.

Monday, September 27, 2010

Buddy Walking

Saturday was the Down Syndrome Association of Northern Virginia's annual Buddy Walk.  This day is one of the most anticipated days for families whose lives have been touched by a person with Down syndrome, for several reasons.  It's the biggest annual fund raiser that brings in much-needed funding to the local and national DSAs - funding that helps provide support for families, public awareness, and programs that enrich the lives and futures of people with Ds.  It's also a day that brings people together.  More than any other event that the Association puts together throughout the year, the Buddy Walk draws the largest crowds.  It's so inspirational to see people with Ds of all ages, to interact with them and meet their families.  It's so much fun to see your friends and to watch your children play with theirs.  Overall, there's a grand feeling of unity.

The NDSS Buddy Walk in New York City was also on Saturday.  Every year I submit a photo of Samantha for their Times Square photo montage video, and this was the 2nd year one of her photos was selected.  I would have loved to have been there in person to see it as it flashed up for the world to see, but this year it was not meant to be.  One of my Facebook friends has photographed the whole thing and I can't wait to see the shot of Samantha as it was viewed by the crowds on the ground!

We started the morning off with what I think was a touch of food poisoning on Samantha's part (no idea what may have brought it on).  She was in good spirits despite the yuck that was going on with her, but with no fever I decided we'd brave the event and I'd just hope she'd stay yuck-free for the day.  Which, thankfully, she did.  Somehow she managed to fall asleep on our blanket in the blazing sun while a very loud band played up on the stage.  She slept for about 45 minutes, and woke up surprisingly happy.

I tend to get pretty emotional at these kinds of events when I hear an inspirational speech or witness some sort of first for Samantha.  Saturday's Grand Marshall was certainly an inspiration.  She is a young woman with Down syndrome who made a speech that made me very grateful for the eye-hiding sunglasses I was wearing.  A young woman that I can hope Samantha will be like one day.  So inspirational.  And, I realized, she is a young woman that happens to be in this year's calendar!  I also was moved by Samantha's encounter with Cinderella.  I know it's kind of weird, but when I see how happy Sammi is to see some of these characters and try to imagine, myself, what Samantha must be thinking when she meets them, I get pretty choked up.  And to see how sweet and kind and, well, Cinderella-like the woman in costume was, made me grateful for my sunglasses once again.

Saturday also marked the annual debut of the DSANV calendar.  This is the 3rd calendar that I've put together, and after nearly 8 months of work (with the help of a friend and fellow DSANV mom), it was finally completed and in my hot little hands to put for sale on the table in the retail tent.  I'll preview some of the images in a future blog post.  My work on it doesn't end here, however - I also do all the mailing-out of orders as they come in, so it really is a year-long project.  But it's a labor of love.  It's so gratifying to see the finished product and to hear the feedback from the parents whose children have been featured.

Here are some pics from the day.  Enjoy!

Thursday, September 23, 2010

EKS Day Acts of Unity

Saturday, September 25th, is the very first annual Eunice Kennedy Shriver Day.  For those of you who are unfamiliar with her, Eunice Kennedy Shriver was the founder of Special Olympics and champion of inclusion, acceptance and unity for individuals with intellectual disabilities.  I have been asked by Jen at ReJenerationS to help spread awareness of this monumentous day, and to pledge to do something in honor of this day.

In a brilliant and fortuitous stroke of coincidence, Saturday, September 25th, is also the day of our local Buddy Walk.  Our hearts and minds will be focused on creating a better and better world for people with Down syndrome.  Some of our local Special Olympian soccer players will be playing teams comprised of the moms and dads in an annual tradition that my husband is always happy to take part in.  I am sure at least one speech that is made on Saturday will include a tribute to the woman that helped pave the way for our event to even exist. 

"I pledge to spread her message of hope, inclusion, and acceptance through my blog, Facebook, and amongst friends and family at the Buddy  Walk on EKS Day, and I challenge you all to re-post this on your blogs or Facebook and tell us what you pledge to do on EKS Day."

I know time is short and we're only 2 days away, but anything you can do to help spread the word is great!  Jen has provided some very helpful ideas on how to spread the word:

•emailing, texting, and using your social media outlets to spread the word about the day.

•Change your profile picture to a photo of Eunice (many images in that link to chose from), and

•use one of her iconic quotes as your status update (see below for a few examples). Click HERE to hear audio files of Eunice speaking.

•On twitter post: RT: I pledge to honor @SpecialOlympics by performing an Act of Unity on RT to sign.

•Be sure to post your Act of Unity HERE.

Have a wonderful and reflective weekend!

Tuesday, September 21, 2010


I can't believe I've had this blog for more than 3 years now!  During that time I've gone from approximately 1 visit a week (probably from my mother) to a heck of a lot more than that.  And my visitors come from all over the world.  Having analytics hooked up to this blog has been such a source of information and entertainment for me.  I love monitoring my blog all day while I'm at work, seeing who's popping in and who's popping out, where they came from, where they're going.  It's not perfect, but it still affords me a little snapshot.  I'm often curious about why people found me, how many of you are connected to the disability community in some way, how many are not, where you're from, how you got there, all the normal questions we have when we realize just how small this great world is.  I could go on and on about life before the internet, but I'll save that for another day.  I'm sure many of you will be able to relate.

Anyway, there's something so gratifying about seeing folks from so many other states and so many other countries come to read about my fairly dull life and my amazingly beautiful little girl.  Eh, who am I kidding?  My fairly dull life is of absolutely no interest to you.  hehehe.  It's all about Samantha, my purpose for creating this blog, my inspiration, my muse

Some visitors pique my interest more than others.  Like one of you shows up as Elkridge, MD, and you visit quite frequently, yet don't ever leave a comment, I don't think.  Another of you comes from Bremen, Germany.  I used to live in Bremerhaven, so close by, and feel that teensy bit of connection to you, although I have no idea who you are.  I occasionally get visits from my home town of Vineland, NJ.  I thought for sure all of my friends there had moved away, so I wonder which one of you reads my blog...?  There are others.  I don't mean to freak you out by singling you out.  My mother occasionally gets unnerved when I call her and say, "so, did you like the blog post that you read 5 minutes ago?"  I think she equates it to a lesser version of Big Brother.  And it is, really.  We have so much transparency with the internet, and with baring our lives and our souls on our blogs that are read by so many.  :-)

Then there are key word searches.  A definite source of amusement!  I don't get a huge number of hits from Google searches, but there are a few.  I remember one blogger (I think it was Renee from Life With My Special Ks) used to periodically post all the key words that had been entered to bring people to their blog.  It always had me giggling hysterically.  I've seen my share of doozies, like "in what episode do Caillou need to pee?"  I think I have seen every single episode of Caillou, probably at least 30 times, and there isn't a single one I can think of where Caillou needs to pee.  He sits on the closed toilet lid once so his mom could bandage his scraped knee...does that count?

By the way, if any of you who do not have Blogger accounts ever feel the remotest desire to post a comment (trust me, I'd LOVE to hear from you!!), you can still post here under Anonymous or Open ID.  Thanks to you all for reading!

Friday, September 17, 2010

Life is Good (I wuz tagged!)

I was tagged by Stephanie at A is for Aiden a couple of weeks ago, and am finally getting around to this!  Thanks so much Stephanie, and certainly, Life is Good!  These kinds of posts are always interesting to me...they force you to think a little bit differently, and bare your soul in a more personal way than I'm used to.  I guess the "favorite cold summer drink" question isn't exactly soul-baring, but you know what I mean.  I enjoy the diversion!

1.If you blog anonymously, are you happy doing it that way; if you are not anonymous do you wish you had started out anonymously so you could be anonymous now?

I don’t see any reason to blog anonymously. I guess if I were super-controversial or something, I would want that, but my blog started out as a way for my friends and family that we don’t see every day to know how we’re doing, and to see photos of Samantha as she grows up. The pride I feel for my daughter could never be anonymous!

2. Describe one incident that shows your inner stubborn side.

Ha. Haha. Uh...

I'm rediculously stubborn, and find it too difficult to describe just one incident.  In a broad description, I generally think I'm right most of the time. Even if I have an inkling of why I might not be right, if I've already put it out there that I think I'm right, I have to back it up until I've convinced myself and all around me, or die trying.

3. What do you see when you really look at yourself in the mirror?

I know this is shallow, but I see someone that could stand to lose about 35 lbs. LOL I see that Every. Single. Day. I used to take it for granted that I could eat what I wanted and not exercise, but all that’s catching up to me now that I have a job where I sit on my butt all day and snack to stay focused. I have no self-control.

On a less shallow note, I see someone that has really evolved over the years, from a care-free kid living the crazy life (oh, and it was crazy!), to the focused, determined, fiercely-protective mother that I always knew I would be. I’m proud of that.

4. What is your favorite summer cold drink?

Water. I really don’t drink much of anything else ever, any time of year. I suppose if I did have to choose a drink other than water for this, I’d say lemonade. Ooh, or Sangria, although I have only had that on about 4 occasions in my entire life (I'm not much of a drinker of alcohol). But I do love it, and summer is so perfect for it.

6. Is there something you still want to accomplish in your life? What is it?

Being a mother was the biggest, most satisfying accomplishment I could ever have. That was the one thing I looked forward to most in the decade or so leading up to Samantha’s birth. While she’s still so young, that’s all there is for me. That’s all I want. But once she’s older and more self-occupied, I’d maybe like to be able to afford to switch careers and become a teacher. It’s the “being able to afford…” part that might constitute the accomplishment to be met, unfortunately.

7. When you attended school, were you the class clown, the class overachiever, the class shy person, or always ditching school?

I don’t think I fell into any one of these categories (although I certainly never ditched school). I was kind of shy, but I also had friends in all the different “groups” that school kids tend to separate into. I credit my 10th grade experience in a school in Germany for facilitating that. Kids whose parents are in the military have to make friends quickly because they tend to be together for such brief periods of time (usually less than 3 years). In grade school I was usually the teacher’s pet, and then always did well in high school. I never had to try too hard to do well, but had my eyes opened in a pretty harsh reality check when I got to college. I guess that doesn’t say much for my high school’s academic challenges.

8. If you close your eyes and want to visualize a very poignant moment in your life, what do you see?

Hearing my beautiful daughter say, “I love you too, Mommy!” for the first time.  It was the "too" part that made it so intentional, so loving, so poignant.

9. Is it easy for you to share your true self in your blog or are you more comfortable writing posts about other people or events?

Not like this post with these questions isn't making me bare all...  While I certainly avoid certain things in my blog and don’t share everything (anyone who does is a fool), I think it’s pretty easy for me to speak as I really am. I just start to write and then it all just takes off. The more honest you are, the more credibility you have.

10. If you had the choice to sit and read or talk on the phone, which would you do and why?

Ooh, now I’m drooling. I haven’t had time to do either in years! But seriously, I’m a reader. I always have been. I have a pile of books next to my bed that I don’t have time to read (reading in bed makes me fall asleep by the time I get to the bottom of the first page). My reading level in grade school was always a grade or two above the rest of my class, and sometimes I’d borrow books from my teachers to read, to keep me interested. I read The Stand (all 800-something pages of it), The Exorcist and Carrie (yes, I loved horror!) when I was in 6th grade.

That's it!!  Now it's time to tag some folks...

I'd love to hear all about:

Amy at The Lamjav Family (a dear friend and former neighbor, with a beautiful, beautiful family)

Stephanie at Daily Smiles (whose blog makes me smile every day!)

Jen at ReJenerationS (a fellow blogger we were so fortunate to meet on a recent trip)

Renee at Sturgill Road (Samantha's former PT, from birth to 2)

Kelli at Love for Colin (another fellow blogger we were so fortunate to meet on yet another recent trip!!)

Wednesday, September 15, 2010

One Last Hurrah or How to Successfully Avoid Vegetables for 4 Days

How is it that you can go on vacation, whether for a weekend, 4 days, a week, whatever, and still feel like you need a vacation from that vacation?  What exactly is a vacation supposed to be?  Is it comprised of doing lots of stuff until you're ready to drop from exhaustion, or is it a relaxing time to do absolutely nothing?  I guess it depends on the person.  But I suspect that we may not see the latter until Samantha is much older and can go entertain herself. 

We're exhausted after 4 days at the beach, staying in my uncle's condo 1/2 block from the ocean (with some wonderful views from the windows).  Exhausted, but we really did have an awful lot of fun.  The weather was definitely not "beach" weather in the classic sense, but was still just perfect.  You couldn't really go into the water because the air was too cool so we never bothered with bathing suits.  Somehow there's something sweeter and more poignant (is that the right word to use here?) about people wandering around on the beach in their regular clothes, pant legs rolled up, feet bare.  It evokes more of a feeling of spontaneity and frivolity (love both of those words).

Samantha loves the beach.  She talked about going to the beach every day, multiple times a day, for the entire week prior.  Every night before bed she'd say something about going to the beach when she wakes up, and every morning when she woke up she'd say something about going to the beach today.  We had to keep telling her, "No, we're going to the beach on Friday.  Today's only MondayTuesdayWednesday."  She talked about it the entire 4-hour car ride there.  "Beach?" she'd say, optimistically, in what I can only assume is her version of "Are we there yet?"  I guess it was a nice break from her previous fixation on Santa coming to visit, but I think that may be back again in the near future...
Probably the most relaxing part of the trip came when she completely occupied herself digging in the sand on Saturday afternoon and allowed Steve and me to have about half-an-hour to play frisbee a few feet away.  Yep, we actually were able to do something different than what she was doing, confident that she was engrossed enough not to get bored or feel the need to wander off.  That was proof enough that she loves the beach. 

She had a first experience on a boardwalk ride all by herself, which started out with laughter, smiles and waves, but ended, in the last minute, in tears (not sure why - perhaps she got dizzy?)...

Sammi was thrilled to have Mema and Pops come to babysit her on Saturday night so Steve and I could toddle off to Atlantic City for a few hours and blow money we had no business blowing (just kidding - it wasn't much, and was only a small price to pay for an hour of entertainment).  She got spoiled silly, having pizza for supper with an ice cream cone for dessert, along with an evening wander on the sand.  Pizza and ice cream.  Yum.  I don't think any of us ate anything even resembling the color green while we were there.  It's so hard to find healthy options for a 4-year old with a limited palate (and two 40-somethings) when travelling.  Even though the condo had a full kitchen, we just didn't want to cook on such a short stay.  I guess it's because we didn't want to deal with the mess, and didn't want to have to figure out what to do with leftovers.  And because we were on vacation and were being lazy (the more likely reason).

Sunday we were lucky enough to have a visit from our bloggy friends, Kelli and Colin.  Colin is a serious cutie, and was more than happy to show off his brand new crawling skills!!!  I really enjoyed chatting with Kelli while Samantha showed Colin how to share (not).  I'm so happy they made the drive down to where we were, and hope we can meet up again some time.

A last hurrah until next year, our official farewell to summer...