Tuesday, July 31, 2012

One Day at a Time

On Sunday, Samantha and I drove out of state to visit a very old and dear friend of mine and her young son who were several thousand miles closer to us than usual while visiting her parents for the week.  It had been a full year since the last time I saw them, and, with our children only 3 months apart in age, we always had so much to talk about on these brief occasions. 

Her parents, a sweet, generous, and loving couple, took us out to lunch when we arrived.  I tried to keep the antsy, withdrawn Samantha entertained while we waited for the food to arrive.  With unfamiliar company, she shut down a little, needing a bit more warm-up time.  I knew she'd be okay eventually, but in the meantime, she played games on the Toshiba tablet until the battery wore out.  My friend, a teacher and ever-prepared for just such an instance, pulled out a small, compact set of 1st reader books, and Samantha, always keen to get her hands on new reading material, perked up. 

My friend's father, across the table, asked, "So, with school...what are you going to do about school for her?" 

I smiled, waiting to see what he said next, pretty sure I knew what was coming.

"Will you homeschool her?"

Ah, there it was.  Absolutely nothing negative about what he was saying - he just didn't know, and I was so happy he asked. 

And I was so happy to respond. 

"Actually, she's *in* school.  She's going into 1st grade!"

He wasn't sure he'd heard me correctly.  "What?"

My friend jumped in.  "Dad, she just finished Kindergarten - she's going into 1st Grade next month!"

He looked surprised, but happy to hear this, learning something unexpected and new.

But the surprises kept coming. 

Samantha took the reading book from my friend, and began to read it, breezing through.  My friend's son, not as strong a reader, said, "Try book 10 - it's really hard.  I can't read it."

Her parents were paying close attention by now.

I turned to book 10 in the series.  Samantha read it effortlessly.

"Does she memorize it?" my friend's dad said.

"No, Dad - she reads at a 2nd grade level."

He was really intrigued now, and I explained that while she's a natural reader, surpassing both my myself and my mother at her age (both in accelerated reading groups all through school), we're now working on reading comprehension.

Uh, and speech intelligibility, of course.  My friend's son, trying so hard, couldn't understand much of what Samantha said to him, partly due to her tendency to go off on rambling random tangents, and partly due to her speaking way too fast.  My friend and I both had no trouble understanding her.  We came to the conclusion that children are not accustomed to reading between the lines, to gathering context to fill in the blank spaces and to formulate full meaning from snippets.

Frustrated, he threw up his hands, and made his own conclusion, "I think she's speaking Spanish." 

We stifled our giggles, and I silently congratulated him for his valiant efforts.

And later, after we said our goodbyes and Sammi and I headed back home, I had some time to think, reflecting on a time not so long ago, when interactions like this would have bothered me, would have left me in tears, feeling that vast gulf between Samantha and her typically-developing peers so sharply.  But time and perspective have shifted things, allowed me to look on them as learning experiences for myself, for Samantha, and for the other child. 

Perspective is such an amazing thing.  It is an indication of growth, of maturity, of acceptance.  It is an indication of having come full-circle, of creating a starting point for the next phase of our lives, of seeing things in a new way and throwing out old, stale misconceptions and negativity, allowing myself to embrace the future.  I hope that each stage in development, both Samantha's and mine, can be met with such clarity, with that new perspective that opens up the next door in front of us. 

One day at a time...

Monday, July 30, 2012

Explaining Death to Children, Part II

There will be a Part III later this week, unfortunately.  We have been preparing Samantha for the next inevitability, letting her know that Addy is very sick and will be joining Delilah in heaven very soon.  That he won't be coming back. 

"Really?" she says, sounding interested, like you've just told her she can choose between a chocolate chip cookie and an ice cream cone for dessert.  "I can go, too?"  Ahhh, the clincher...

I respond patiently, "No, baby, you can't go, too.  They're not coming back."

"They won't be sick anymore?"

"No, honey.  They'll feel much better."

While she acts like she doesn't quite know what the heck I'm talking about, I know what defense mechanisms she has in place, like the one where she looks at me, all wide-eyed, interested, and says, "Really?"  It is a defense for her.  She may not quite understand what's being explained, but she pretends she does, storing it in her mind until a later connection can be made, until she can put all of the fragments together to form the cohesive idea that's been presented.

Flipping through the photos on my cell phone, she gets excited when she comes to the photo of Delilah.  "Look mommy, it's Delilah!"  Gently, sweetly, she touches the image to her lips, a soft, butterfly of a kiss, and says, "I love you, Delilah."  Gets me every time.

Driving home from visiting a friend yesterday, through the absolutely gorgeous rolling hills and dense forest of Southern Pennsylvania and into Northern Virginia, I pointed out a young faun standing on the side of the road, watching the cars pass by.  I siezed the moment to throw in a lesson that's been rolling through my head for some time, presenting a real challenge to me on how to best teach it.

"Sammi, I hope that baby deer doesn't run out into the street...if he does he'll get hit by a car."

Sammi was listening.  "Really?  He'll go to the doctor?"

I briefly tossed around the idea of treading carefully with this, but thought the direct approach may be the one to drive the point home most effectively.  "No, honey, he'll be dead."  Gah, did I really just say that??  Does she even understand what dead means?  She does understand die in two separate contexts - I told her Delilah died.  She also knows to refer to the need for the Toshiba tablet to be charged by saying the battery died.  Good enough.

"He'll go to heaven?"

Yes!  She does understand!  "Yes, baby.  He'll go to heaven, and he won't come back.  That's why it's so important to *not run away* and to hold mommy's and daddy's hands when you cross the street and to look *both* ways to make sure cars aren't coming."  (I have a little blog post about impulse control waiting in the wings... And, I might add, this was a much less harsh way to teach this particular lesson than the one I was considering, a suggestion made by someone recently to show her the flat remains of fresh roadkill...)

Got it.

I let it lie after that.


Wednesday, July 25, 2012

Special Jeans for Special Genes

I'm a big fan of blue jeans.  Which is actually quite surprising, given my past years as a goth who felt both fear and repulsion at the thought of ever having to put them on my body.  I'm not sure what shifted, but suddenly, one day I woke up and decided that the biggest and best fashion statement ever was a pair of jeans with a white t-shirt.  And then it was a pair of roll-cuff jeans under a dress or skirt.  And here I am today, still of that same mindset. 

And, as the person who most-often picks out the clothes for and dresses Samantha, I would often replicate this. 

However...what is available for the under-5-year-olds and the 6-plus-year-olds varies drastically.  Stretch-waist pants and jeans, so perfect for my little one who was potty-training for so long, so perfect for her lack of fine-motor coordination and inability to button or snap, even more perfect for comfort against her low-muscle-toned little tummy, became harder and harder to find as she grew. 

I knew it would quickly become a thing of the past to be able to put her in jeans, and leggings and bike shorts became the staple items to wear under her dresses, on their own, or with heavy legwarmers during the winter.  Thank goodness leggings are everywhere for little girls.  I do definitely feel for the parents of little boys out there with the same predicament.  Sending a child off to 1st Grade in pants she can't fasten after using the bathroom would be horribly unfair. 


A year or two ago, I found and began following a blog written by a woman whose granddaughter has Down syndrome.  The woman's mission was to design and create a clothing line just for people with Ds!  The blog chronicled her journey as she searched for a designer, manufacturers and models, traveling the world in search of the perfect fabrics and the perfect people to fabricate them.  Finally, with the completion of her first line of jeans, her dream has become a reality, and my need and the needs of so many others has been fulfilled. 

While a complete clothing line will eventually follow, jeans, being the ultimate staple item for so many, are the logical first step.  While at the NDSC conference last weekend, I had the pleasure of meeting Karen and Jillian, the two masterminds behind Downs Designs, and had Samantha fitted for a pair of these miracle pants.  When I say the jeans are perfect, I do them an injustice.  But seriously, they're perfect.  I'll let you in on a little secret...my own favorite pair of jeans is a pair of Gap maternity jeans.  I still wear them, although my stretchy waistband has nearly ripped off of them with use.  These are like those awesome Gap maternity jeans, except they're for kids.  Uh, kids who aren't pregnant. 


The waistband is wide (but not too wide), soft and stretchy, fitting gently around Samantha's stomach.  The fabric of the legs is tough and durable, yet also soft and stretchy, although not at all clingy.  There were no bags or sags in the seat, and the length will be hemmed to order.  And the price?  Fantastic.  The children's sizes are $16.99.  Sammi just tried on a sample at NDSC.  I only wish there had been quantity to purchase on-the-spot, but with leg-tailoring necessary and us being smack dab in the middle of the hottest summer ever, I can wait a little bit.  My mother is about to order a pair, and I can't wait to get them!  They'll be the perfect back-to-school item to have.

I have a feeling Samantha will be able to wear these for the next two years, and am keeping the hem extra long so I can roll them now, and have her continue to wear them as her legs grow.

Get your measuring tape out and visit the Downs Designs site to order a pair.  Sizes go up to adult, and are available in design shapes specific to male and female bodies.

I'll post again when they arrive, and write up another review!  Thank you so much Karen and Jillian, for creating this unique clothing line! 

Tuesday, July 24, 2012

Small World

So I talked about the 1 in 5 seen in Woodley Park over the weekend.  And I mentioned our dinner out at the pizza place on Friday evening.  But I didn't get a chance to talk about just how coincidental that dinner actually was. 

When we walked in, we were greeted and shown to a table right away.  There were one or two empty tables left, but the street was beginning to fill up, and I knew that the dinner hour would change everything momentarily.  We sat down, and I looked around, noticing, at the table behind us, a young man with Down syndrome.  He was wearing a baseball hat and having dinner with a woman I assumed to be his mother.  The table next to us, nestled into the window bay and bordered, for seating, by a red pleather couch, held a family of 4 - mother, father, son, daughter.  I noticed the daughter also had Down syndrome, and I smiled. 

As we waited for our food, Samantha began to get antsy, needing some entertainment to keep her occupied.  My mother opened up her bag of tricks and pulled out a toy, which seemed to work for a while.  Growing bored, Sammi tossed it from the table, where it landed beside the young man in the hat.  His mother reached down, picked it up, smiled at Samantha, and handed it back.  Of course we dropped the toy back into Gramma's bag to prevent a repeat performance. 

Waiting more, Samantha decided she would join the family in the bay window by hurling herself over the couch and into the laps of the two children.  Ugh.  Apologizing, I hauled her back out, losing one of her shoes under their table in the process.  They were very gracious, amused, laughing and handing back the shoe, stating that she was welcome to join them.  Two more times I hauled my wriggling, protesting child back over the couch.

Dinner came, and all of the tables in the small restaurant were full, including the outdoor seating on the patio.  A line began to form beyond the door.  Just then, a woman who had been outside, came in and approached us, introducing herself as my blog friend, Kelli, from Living Life with the E's!   There with her husband, minus the children (awww, I could really would have loved giving sweet Emily a big squeeze!!), we had seen each other briefly earlier that afternoon in the Blogger's Sharing Session, although a lack of time (and a cranky child of mine) had prevented any more formal introduction then.

After dinner, Samantha left with my mother in a taxi to head back to my mom's house over the river while I went back to the hotel to wander around by myself for a few more hours.  I received a text from one of my Facebook friends that I'd been trying to connect with, and we met up for coffee.  Having not met before in person, I didn't really know what she looked like, though through conversation we discovered that she was actually the one who handed Sammi's toy back in the restaurant!  I can guarantee that if her son had not been wearing the baseball hat, I would have recognized them then and there, but his disguise had me fooled...

A few hours later I received a message on Facebook from someone saying, "It was nice to "meet" you informally at dinner tonight!"  You talkin' to me?  I was pretty sure she had messaged the wrong person.  Really.  I looked at her Facebook profile and realized that she was at the table in the bay window with her family!

Over the last few years I've learned repeatedly just how small the world is, but this was a sweet reminder, among so many others, of just how lucky we are that that's the case.  I shudder to think what our lives might be like without the internet, applaud those that had come before, and thank my lucky stars that we don't have to forge ahead that way, plodding through phone listings, books or snail mail to stay connected to the world. 

Monday, July 23, 2012

1 in 5

I sit here, wearing my Down syndrome awareness shirt, still basking in the afterglow of an amazing weekend surrounded by families touched in a beautiful and profound way by the extra chromosome that makes up Trisomy 21, Down syndrome.  I have so much to say, but honestly don't know where to start.  I could talk about how Samantha couldn't tolerate the sessions, sensitive to small, warm, crowded rooms, applause, laughter, you name it.  I could talk about how awesome my husband and my mother were, helping to entertain her so I, at least, could make the most of the conference.  I could talk about how absolutely inspirational and amazing the self-advocates were, painting a bright and colorful future in broad strokes across the canvas of their lives, across the white space in my mind reserved for plans and dreams not yet realized.  I could talk about the sessions, full of information and guidance to better ourselves as parents, advocates, therapists, care-givers, teachers.  I could talk about the vendor tables in the exhibit hall, bubbling over with merchandise and information, manned by enthusiastic delegates ready to hear your story, create a link to their mission, provide you with the tools you need to meet your goals. 

But, for now, I think I will talk about one major thing that struck me most this weekend. 

Woodley Park is a neighborhood I am well familiar with, having lived just up the street from there for nearly 14 years of my life.  The NDSC conference hotel was mere steps away from the Metro station in the heart of the 'hood, convenient in so many ways.  Transportation, restaurants, entertainment, the zoo...it's all there.  On Friday evening, my mother, Samantha and I had dinner in a pizza restaurant in Woodley Park.  Once we'd settled in, I had a look around me.  There, at tables on all sides of us, were people with Down syndrome.  Adults, children, babies...all there dining with their parents, having an ordinary evening out, dressed like anyone else, eating their dinner like anyone else, enjoying the time with their families like anyone else.  The wait staff, busy juggling so many full tables while a line began to form outside, served them like anyone else

The incidence of people with Down syndrome within a random sampling of people had jumped from the usually-acknowledged 1 in 691 to an incredible 1 in about 5.

1 in 5.

I had the enviable glimpse of what the world could be like with the invaluable addition of so many more of our enhanced children/friends/family members. 

It would be so much the same as the world on any other day

And, as we walked through the neighborhood after dinner, I hoped that the usual residents and visitors to Woodley Park (and to DC in general) would see this, would see that people with Down syndrome really are More Alike Than Different.  That they deserve a place at their tables, on their trains, in their shops, museums, schools, homes, just like the rest of us, and that the world will still turn, friendships will still be forged, love will still be found, jobs would still be done, and lives would still be ordinary.


The world would be so much a better place.  Extraordinarily ordinary.  Open minds, open hearts, open eyes. 

I think we did just that in DC this weekend. 

I had wondered why NDSC's annual conference was held in a different city each year.  I mean, why not strive for consistency, for predictability, for more mild-climate locations...?

But now I know why.

And I'm pretty sure DC is a much better place today than it was last Wednesday.

Wednesday, July 18, 2012

Measuring Progress, Literally

Everyone who sees Samantha after a break of a month or so remarks how tall she's gotten.  Like, after just a month!  But I often think those growth spurts really do happen like that (and trust me, I'm more than happy to blame any bad behavior she's had during that time on just such a spurt...LOL), especially when it's well-documented on the wall. 

When Samantha and I got home from the tea party photo shoot on Friday evening, she asked Steve to take her measurements again.  He started documenting them just a few months ago, with the most recent one taken in late May.  We were both completely shocked to see that she'd grown an inch in that short time!  I have to think that there must have been a mistake.  I don't know.  But every time I look at my little girl, I see how long her legs are, how her little Buddha-belly has suddenly begun to slim out, I see the first shadowy images of the leggy teenager she's sure to become.

Forgive the image quality...

I'm 6' tall. Steve is 5'10". The average height for an adult female with Down syndrome is about 4 1/2 feet. When she was a baby and I did those BabyCenter calculations to determine how tall she'll be, based on her height at the time factored in with the height of myself and Steve, it repeatedly turned out a response of 5'4". I haven't done those calculations in a very long time, but I'm thinking she may manage to push at least that when she's done growing. To be perfectly honest, I really don't care how tall she is, but I find it interesting anyway to see how parental height may influence the extra chromosome.

I always had to laugh when people not in the Ds community would see us and say, "Oh, I'm sure she's going to be really tall, like her mommy!" Depending on who they were, I'd occasionally correct them with a quick science lesson in genetics, but usually I'd just say, "Hmmm...maybe."

Eh, who knows?

Tuesday, July 17, 2012

Little Angels and the DSANV 2013 Calendar

It's that time of year again, that crazy time when I feel like I have to pull a rabbit out of a hat to make something happen, something I love, but something that manages to somehow fold little daggers of fear into my heart.  Something that every year I say I'm not going to do again, but that melts my heart so completely that I can't possibly imagine not doing it.

It was 5 years ago (FIVE!!!) that I began organizing and putting together the annual wall calendar for the Down Syndrome Association of Northern Virginia.  It's a pretty big project, and I'm a notorious procrastinator, so I do what I learned best in college before my exams - cram (from Dictonary.com: verb: To study hastily for an impending examination).   I am also a bit of an ostritch, digging a hole and burying my head in the sand to keep from hearing something that I don't want to hear, like finding out that a sitting between a selected model and an assigned photographer never took place.  Oh, that always makes me crazy, and I'd much rather have my hands over my ears singing lalalalalala, I can't hear you... than address it in a timely manner.  With 37 models, all necessary to complete the layout of the calendar, this can be a problem.

But somehow, in some crazy, fortuitous way, that rabbit always still pops out.

Although I think I depend on that damn rabbit for doing it's own magic.  One day a rabid skunk is going to pop out of that hat, and bite me right on the butt.

But until then, my hands are firmly clamped over my ears, and the show goes on.

The mother of one of this year's selected models, one of Samantha's beautiful and sweet little friends, asked for Samantha to be a part of her photo shoot, creating an idyllic tea party scene between two little girls.  A fantastic idea!  I arranged for an amazing photographer, and we all agreed on a date, last Friday evening at 7pm.

At 7pm.  Right.  With a stranger taking photographs of my actually-very-camera-shy kid.  Right before bed time.  Being asked to participate in a situation not of her choice, even though she initially seemed excited to have a tea party with her friend.  Did I mention that one of the items on her IEP involves group participation?  Give her a tea party on her turf, on her time, instigated by her any day, but tell her to do it at a particular time and have a stranger photographing the scene? 

No way. 

Immediately, her arms were crossed, and her bottom lip went out.  Not making for a very pretty or interactive scene.  And when her little friend offered her some tea, she threw the cup back towards her.  Omg.  Awwwwwful.  But all we could do was laugh, and hope she'd warm up.  And you know what warmed her up? 

A cupcake, of course. 

But the tea party was pretty much done by that time.  I've got some thinking to do about which shot to use.

Many, many thanks to our amazing photographer, Diana Adams, who has now worked with me for all 5 years on this project, donating her time and expertise.  It was great to actually meet her in person!   

And now on to the next phase...substituting for the missing models (ugh), and creating the layout (which is actually the most fun part for me).  The next few months are the part that reminds me just how much I love doing this, seeing the beautiful photos of the beautiful, chromosomally-enhanced faces of our local Down syndrome population, my smile getting bigger and bigger with each completed page, my excitement growing like a child at Christmas as I reach the grande finale, waiting anxiously for the first proof to return to me from the printer, then the culmination of many months of preparation and creation as the heavy, tightly-packed boxes of the finished labor of love arrive on my doorstep.

Monday, July 16, 2012

Blogging on Paper, About the Cat

The following was painstakingly transcribed from my very own chicken scratch:

Sounds weird, I know, to be blogging on paper, but here I sit, in the public library, minus a computer, thankful for the generosity of the librarian who gave me a few sheets of paper to quell my boredom while Samantha sits, cross-legged beside me, paging through an Arthur book.  My wrist already hurts, very telling of life in the digital age where pens and pencils are used sparingly.  I'm also forced to think about what I'm writing, being far more cautious of making mistakes, as highlight delete and backspace don't apply.  Why, oh why, didn't I think to bring my Android tablet? 

So, from trouble with one cat, to trouble with the other.  When Delilah died, our remaining cat, Addy, has become insufferable.  It's like he picked up where she left off, whining incessantly for food, insatiable despite having food readily available at all times, refusing to drink water from his bowl in favor of long drinks from the tub faucet or the water pooled on dirty dishes in the sink, diarrhea, and using the rug in the office upstairs as an occasional litter box.

Unbelievable.  We thought perhaps he was pining, missing his sister, but we decided on Friday to get him properly checked out by our local highway robber veterinarian.  I dropped a stool sample off in the morning on my way to work, fresh from a pile left for me on the office floor, then took him in in the afternoon, after leaving work early.  Believe it or not, I actually heard him hiss for only the 2nd time ever in his life.  Always a very healthy cat, he'd never before been subjected to the indignities of a veterinary exam.  Really, who could blame him?  I'd hiss, too, if somebody...well, nevermind.

Big shocker was that he'd lost almost half his body weight in about 2 years.  Not a good sign.  The suspicion is either diabetes or a thyroid problem.  Seriously?  We'd only finally just stopped having to medicate a high-maintenance cat twice daily, and were actually enjoying the feeling of liberation we'd had over the last month.  The thought of having to do that again fills us with frustration and dread.  Uh, a feeling not dissimilar to that felt when I was handed the vet bill, payable on-the-spot.  Omg, did I mention highway robbery?  Ho-ly COW.  Full blood panel plus office visit plus fecal screen (which, by the way, has already come back negative for parasites), plus antibiotic (for diarrhea) plus probiotic (for antibiotic, for diarrhea), came to a rather large fortune.  *Gasp*

Test results should be back soon.  I'm not sure what to wish for, although when Delilah died I thought Samantha would miss her monthly visits to the pharmacy compounding center in another town with the cool fish tank where we got her thyroid medication.  We may be paying them regular visits (and small fortunes) once again.

Addy, on the cat tree at the vet, trying to regain some of his lost dignity.

Wednesday, July 11, 2012

Thanks for Nothin'


Thank you to that nice financial planning firm with a specialty in Special Needs Trusts for having a free, sensory-friendly showing of Disney's Brave a few weekends ago.  Sensory-friendly is a good thing for the kid, and free is definitely a good thing for her parents.  And the movie just happened to be fabulous.  And thank you to that same financial planning firm for having said showing in the biggest, most popular shopping mall in the entire region, that just happened to have a Disney store, ready and waiting for gullible unsuspecting parents, like myself, to lose their kids to magic mirrors that talk, and magic wands that don't make the magic mirrors talk, but kids don't know that and keep waving the damn things around until you pry them from their tight-fisted, grip-of-death hands and pick them up screaming to get them out of the store after being stuck in there for a good half an hour, absolutely dying for a latte at the Starbucks next door. 

Ahhhh...I could just smell it...  

And thank you to one of Sammi's little friends for the Toys R Us gift card for her birthday.  And thank you Toys R Us for an interesting shopping experience in the heat and dark as you bravely stayed open, chancing shoplifters and heat strokes, so people like us could buy Disney princess toys during the massive power outage after last week's storms.  And curse thank you again, Toys R Us for having such a horrific brilliant deal that gave us a free Merida wig (the heroine of Brave) for spending $30 on Disney stuff (for which we bought a Merida doll that sits on her horse, Angus - it was $29.99, and the nice people at Toys R Us said they wouldn't quibble over a penny.  Maybe it was just too hot to argue...).  And thank you, Steve, for noticing that deal, when I would have purposely avoided missed it.  (Don't worry, Steve, I won't post the photo of *you* wearing that wig - your secret's safe with me!)

And now, the one, the only, Samerida!!

And the crowd goes wild.

Tuesday, July 10, 2012

NDSC - Who's With Me?!

NDSC is just around the corner!  For those of you not in-the-know, NDSC stands for National Down Syndrome Congress, and they are hosting their annual conference right here in my neck of the woods!  It's in a different location every year.  Too expensive to have to travel to, I'm really excited that it's a short drive away this year.  A mere week and a half away, and I have absolutely no idea how to make it play out effectively and efficiently.  Like yesterday's post about my high-maintenance trip to the waterpark, I now have to plan out the details of transportation (to drive in, or to Metro?  To go straight from our house, or to stop at my mother's and leave the car there?  To stay at home, or to spend the night at her place, right next to the City?), session-selection (my thoughts on this will follow momentarily), entertainment (for the kid, to keep her happy for a very, very long day without Kids Camp), food (snacks, lunch?, drinks, whatever), entertainment (for the husband, to keep him happy for a very, very long day without ESPN/Fox World Sport/etc. - did I get any of that wrong, Steve?  Sorry...sports does that to me...), and meet-ups (how on earth to find everyone I want to find?  It's hard enough at the local DSA gatherings, let along amongst 2,000 people, searching for faces I've never met in person).

I am the queen of winging it, and I'm sure it'll all work out just fine.  My mother is going with us to help distract the kid, but I'm hoping she'll join in with some of the sessions as well.  With that, I'm hoping that Samantha will be a perfect angel, able to entertain herself like a pro.  Just like I'm hoping that pigs will fly and that David Beckham will ride in over a rainbow on a unicorn, carrying a cupcake (anyone else watch Hell's Kitchen last night?).

So, back to the session selection...  I am assuming that people can only attend one of the sessions for each 1 1/2 hour time slot, correct?  That poses some interesting dilemmas, as many valuable sessions will overlap.  But I have also heard that they will be videotaped and will be made available at a later date, which I hope is true.  Here are my choices.  I'm able to rule out a lot of the sessions because they're geared towards the little kids (how did Samantha suddenly cease to be a "little kid?"):

Friday Blogger's Sharing Session (I highly doubt we'll be attending the dance afterwards.  Not Sammi's thing, Little Miss Go-To-Bed-On-Time-Every-Night, although I could possibly give her to my mom to take back to her place while Steve and I hang out for the event...)

Saturday 8:30-10am
Video Modeling:  An engaging and Effective Means to Teach Children with Ds (it's the social stories part of this that has me particularly intrigued)

How to Prepare for Independent Living Now (I'm a little bit less inclined towards this session, as we do still have at least a little bit of time before we have to get started on this...)


Your Dependent with Special Needs:  Making Their Future More Secure (I'd like Steve to attend this one)

Reading & Language Intervention (RLI) (Not so sure about this one - I saw a Webex of this being discussed and ended up tuning it out, although that could have been in part due to me being on my lunch break at work and getting distracted by work stuff.  Besides, Samantha can already read.)


Why All the Fuss About Working Memory?  Activities & Classroom Support to Enhance Learning


Down Syndrome, Aging and Alzheimer's Disease (Do I really feel like getting depressed, though?)


Obstructive Sleep Apnea and Ear, Nose and Throat Problems Seen in Ds (I saw this presenter speak on another Webex presentation a few months ago, and was blown away to hear that even if a child doesn't have apnea now, they will almost certainly have it by the time they're age 12.  I think I need to learn more about this, especially as we've never had a sleep study done...)


Film Festival (All of the Film Festival offerings look amazing.  I could spend the whole conference just watching movies, I'm afraid!)

Teaching About Time and Money (now that Sammi can read, I need to learn how to teach her math, and especially practical math)


Encouraging Creativity and Artistic Achievement in Persons with Ds (This sounds so cool!)


Issues & Concerns During Puberty (it won't be long now, but I do actually still have time to learn about this before it becomes imminent)


Film Festival (yep, there's more!)

We're not going to the banquet on Saturday night, but maybe we can hook up for dinner with some other families who are also not going!

Sunday 8-10am
Film Festival (woo hoo!!  Maybe I'll just go on my own on Sunday...)


Building a Better Reader Through Use of Active Comprehension Strategies (I think I know some good tools for doing this already, but sometimes it's good to have extra reinforcement...)


Achieving the Goal:  A Monumentally Rewarding Life


Film Festival

Okay, so now that I've bored you all while I work out my schedule out loud, how many of you are actually going?  Which sessions are you planning on attending? 


Monday, July 9, 2012

High-Maintenance Me and the Trip to the Water Park

On Saturday we went to the water park.  I'm still baffled by just how much preparation goes into an event like that.  As simple as it is, requiring nothing more than swimsuits and towels, or so I thought, it became a huge, race-against-the-clock, list-making, shoulder-sagging, detail-oriented monstrosity.  I'm sure none of this is news to you experienced moms, and especially you experienced moms of more-than-one-kid. 

I've always wanted to be one of those jump-out-of-bed-pull-the-hair-back-and-go kinds of people.  I've never been one, nor do I even have a clue of exactly how liberating it must be, although I can certainly dream...  Just to get my sorry butt out the door in the least high-maintenance way, I have to complete a whole ritual, including straightening my unruly, frizzy, bed-kinked hair (think Thing One), brushing my teeth, washing my face, moisturizing (or sun-screening), putting on at least a little bit of foundation primer and foundation to cover the zits and shiny spots and uneven complexion, and obsessing over what to wear, and that's all even without a shower.  I won't go into what a typical get-ready-for-work day entails.

So, with all of those steps just to get me out, going to the water park added, in addition to getting Samantha fed and dressed, the logistical brain teasers of what the hell to do with my money and keys so they were accessible in the giant-sized beach bag, what snacks to pack and how to pack them, which towels to take, whether or not to take changes of clothing, and if so, which ones, how many times to put Sammi and myself on the toilet before we left to minimize the necessity of having to use the sodden, germ-ridden facilities at the park, which sunscreens to bring, and what time we'd need to get out the door.

Steve's invaluable insight told me to put the keys and money in a zip-lock baggie.  Perfect!  I tossed some lip gloss in there, too, hopeful that I could attempt to make the drowned-rat-me into the drowned-princess-me with a quick swipe of moist (gah, I hate that word!) color.  I knew it would be futile, and never ended up touching it.  Drowned rat is drowned rat in just about any book, especially the ones distinctly lacking the presence of a fairy godmother.

I packed fresh fruit (not a favorite of Samantha's, unfortunately, but I hoped this would be the miracle day to change her mind), fruit snacks, peanut butter and jelly sandwiches and Cheetos.  Turned out to be the perfect combo, even if the fruit was only eaten by the grown ups, and the fruit and drinks fit perfectly into a small insulated container with an ice pack.

An extra set of clothes was painstakingly selected for each of us, although in the end we just kept our swimsuits on and sat on towels on the ride home.  Note for next time...skip the extra crap.  The bag, weighing about the same as a small child, ended up creating a permanent dent in my shoulder in addition to adding painfully to the weight of my own small child who was too whiny to walk on her own.  Note for next time...skip the extra crap (and make sure the kid is not cranky in the heat, standing in line, exhausted from staying up late for fireworks the night before and waking too early that morning).

We visited the bathroom several times before we left the house.  We visited the bathroom at the water park several times while we were there.  *sigh*

I'd made arrangements to meet a friend at 10am, thinking only at the very last minute that that would be way too late to get an umbrella-covered spot or, potentially, to even get in at all.  We rushed out the door at 9:00, arriving at 9:30, and, after waiting behind about 40 other people in the sweltering 90-something degree heat for the ticket window to open at 10, made the mad dash through the park to squeeze 4 loungers under the huge umbrella with about 20 other people.  Is it me, or were there an awful lot of numbers in that paragraph?

I'm heading out to a different water park now (it's Sunday afternoon as I write this).  Will I loosen my vanity standards, since they don't seem to make much of a difference anyway?  Will I make sure the kid isn't tired and is excited and raring to go?  Will I take a smaller bag? 

No, no and yes. 

Off to wash my face now, kid is exhausted and cranky and keeps telling me she doesn't want to go, and I already have a smaller bag packed from a playdate this morning.  No food other than a couple of packets of fruit snacks is needed since it's 3pm. 

I may never learn, and I most certainly will never be able to pull my hair back and run out the door, although I am growing my hair out for that exact purpose.  I'll let you know if it works next summer.

Update:  the Sunday water park outing got canceled due to thunderstorms, so we had an extra playdate at home with friends instead.  I think Samantha and I were equally relieved.  Whew!

Friday, July 6, 2012

The 4th, From the Bath Tub

Aaaaaaand....now back to our regularly scheduled programming...

After yesterday's heavy and controversial post, from which I received the most astounding responses (thank you all for your support and unconditional friendship, and for sharing your own beliefs!), I felt the need to lighten things up a bit.

Our own town's fireworks will be held tonight this year, rather than on the actual 4th.  We'll be camped out on our deck, about 2 blocks from the launch location, cooking out with friends and watching from just about the best seat in the house.  I've promised Samantha I'll get her some earmuffs (or devise some alternate noise-muffling device since the temperature should be up around 100 degrees - not really earmuff weather) and she can stay up for the light show. 

On Wednesday we went down to my parents' lake house, just for the day.  My aunt and uncle and my cousin, Jenny, visiting from New Zealand, were all there, and my mother worked her magic in the kitchen, creating a delicious brunch and then dinner.  I was thrilled to be able to spend more time with Jenny before she returns home, and we floated out into the lake on rafts for an hour or so, catching up on our lives, and reminiscing our childhood, during which we spent so much time together.

Samantha was well-taken by Jenny, and, after discovering how much fun my parents' huge, unused bathtub is, spent a fair amount of time with her new friend in there.

Thursday, July 5, 2012

My Thoughts on Faith & Disability

Welcome to the extra-heavy Disability Blog Hop topic, Faith & Disability.  When I first thought about what I would write on this subject, the word religion came immediately to mind.  But somehow, that just didn't seem right.  Faith may lie intrinsically within religion, but religion may not always lie within faith.  According to the all-knowing Wikipedia, faith is "confidence or trust in a person or entity," and may include trust or belief without proof.  Also from The Great Wiki, "The word religion is sometimes used interchangeably with faith or belief system, but religion differs from private belief in that it has a social aspect."  TGW goes on to say, " Classical Judaism does not require one to explicitly identify God (a key tenet of faith in Christianity), but rather to honour the idea of God."  I had wondered where my belief that God is more of an idea than an identifiable being had come from, and, with my Jewish upbringing, I now think I know.

All that being said, the groundwork having been laid, my own personal beliefs do not center around any organized religion.  In a world where my circle of friends grew out of common interest, out of similar educational and social circles throughout my life, religion and faith never entered into our conversations, were never part of who we were to each other.  Some subconscious part of our selves betrayed our lack of faith, or of religion, and surely that's what attracted us to each other in the first place, creating life-long friendships.  Now, in my grown-up, mommy life, in this life where I have been joined with so many new and different cross sections of society and human nature by both motherhood and by disability, I struggle with this vast division placed between myself and my beliefs and what I have discovered are the beliefs of far more humans in the world around me than I'd ever, in a million years, expected to find. 

The divide is great. 

My beliefs, my possible lack of faith in a deity or other omnicient being, is great.

I know this sets me apart from the masses.  But truly, I think my resolve holds fast despite the beliefs of my otherwise-peers. 

God does not give special children to special people.

Praying will not change the outcome of my IEP meeting, nor will it cure the sick, heal the wounded.

But meditation?  Introspection?  Will those help calm my mindset, settle my nerves, allow me to think more clearly and make better decisions?  Of that, I am certain.  Perhaps that's what praying really is, regardless of what others may think.  I think we need to rely on ourselves to show us the way, not place blind faith in a power that was created and built on fables and fear.

My father once asked me, sitting together outside schul on the High Holiday of Yom Kippur back when I was in college, what my thoughts were on religion.  I paused, thought carefully for a moment, then responded simply, "Religion is a crutch for people who need it."  My father nodded his head, let it go.   

Crutch may have been an unfair word to have used.  I do not judge.  I do not condemn another's beliefs, decry what gives another strength.  I have always had a great appreciation for the beliefs of others.  Even with this new world of disabililty into which I've been thrown, this world that seems to be dominated by Christians and Christian belief, I believe what I believe, and that is in the intrinsic goodness of people.  If there is a god or otherwise all-knowing deity out there, one that will judge and will give and will take away, it will know a person's heart, regardless of performed ritual, or of organized tenet.

We do not, and we will not, suffer for our beliefs, or lack thereof.  Knowing onesself, knowing where to seek comfort, whether in Biblical verse or in modern poetry, performing a ritual, or marveling in the beauty of a painted masterpiece, is what works to bring peace, or to make sense of the world around us.

Disability does not need to be explained by faith, does not need to be fixed or otherwise lessened by faith.  Regardless of where you live, what you believe, needing no higher explanation, nothing to justify it in the cosmic sense, disability just. is.


Monday, July 2, 2012

Of Storms and Sleep

Don't let the 5:30-6am wake-up times fool you.  My kid can sleep.  She could probably sleep through a war.  And, as a creature of habit on top of all of that, she is next to impossible to keep up past her usual bedtime of 7:30-8pm.  Since she was about 3 months old, she's never gotten up during the night.  I don't mean to make you all jealous, but really, we're pretty darn happy about that.  But the 5:30-6am wake-up time does necessitate that we (or at least I) go to bed pretty early in order to get a good sleep.  And there's nothing wrong with her waking around that time anyway, as school starts at 7:50, and she'd need to be up by 6:30 to get ready to get out the door by 7:30.  The kid has no concept of hurry

I'm totally getting off track here.  I just had to say all that to make you jealous as a bit of clarification. 

Friday night, as Samantha snoozed quietly, safe and cozy in her bed, Steve and I watched the Doppler radar flickering silently, stealthily, menacingly across our TV on the local weather channel.  There was a veritable wall of storm just minutes from engulfing us.  And not a storm that had any kind of gentle lead-up...it was a wall.  Like, there'd be nothing, and then there'd be hurricane-force-wind storm.  I flitted around the house preparing stuff that would be deemed an inconvenience if we were to lose power, like getting all the dishes out of the sink, hunting down the flashlights, laying some stuff down on the back deck that would surely be knocked over, washing my face and brushing my teeth for bed, you know, those little things that could prove problematic later.  As I started to clear the sink, whoosh, there it was.  A solid wall of wind, smacking head-on into the house.  We knew it wouldn't last long, but in the interest of being prepared in case our roof was blown off, I went upstairs and picked the sleeping Princess up out of her bed, still sound asleep, and brought her downstairs with us in front of the TV, still sound asleep. 

And yes, she slept through the whole thing, allowing me to put her back into bed half an hour later, never the wiser to her little slumbering journey.

Crazy, I know. 

And, unlike more than a million (yes, I said million!) people in our region, we did not lose power.  The planners and developers of our town, being a new-ish development in the grand scheme of things, had the forethought to run all of the power lines under ground, sparing us the inconveniences felt by others nearly every time there's a storm. 

Somehow some of the nearby businesses have managed to stay afloat during this power crisis.  Wanting to spend a gift card Sammi had received for her birthday, we ventured over to Toys R Us on Saturday morning.  Toys R Us who had no air conditioning and minimal back-up lighting and registers running off a generator.  Strangely serene and relaxing (if you could get past the sweat trickling down your face) in that state, we purchased some Brave dolls (Merida and her horse, Angus) and scored an unruly red Merida wig (free with any Disney purchase of $30 or more!), which was a big hit, especially when placed on Daddy's head.  I decline to include photos, in the interest of seeing our 21st anniversary in November...

Target was similarly open, although we opted for a different location closer to home (yes, we have 3 Targets within a 5 mi. radius, with another one just slightly beyond that) that did have power.  I guess you've gotta do what you've gotta do. 

My car gas gauge hit empty yesterday, and I felt genuine fear as I pulled into one of the local gas stations only to discover a huge line of cars waiting for gas with only 2 or 3 operational pumps, and a big sign stating that there was no regular gas left.  I gave up waiting, and left.  All the out-of-towners had apparently flocked to our town to get gas from pumps that actually worked.  I was relieved to find another station nearby that, while it had all pumps working and no line, only had regular.  Works for me! 

And, as my office happens to be closed today due to no power, I am unable to do much, other than keep checking my work e-mail for updates, stay cool in my well-air-conditioned house, and catch up on a bit of blogging. 

My heart goes out to those who are suffering through the heat and dark and lack of refrigeration.  I can't even imagine having to do that.  Hearing everyone's stories reminds me of just how fragile our infrastructure really is.  So many things we take such great advantage of, take for granted, that could go away in an instant and leave us in dire straits. 

And sleeping in the heat is just about the most awful feeling, with temperatures in excess of 100 degrees this past weekend.  Yikes.  

Even though I suspect Samantha would still be able to pull it off in that awesome-sleep way of hers.