Thursday, June 28, 2012

The Absence of Down Syndrome

Down syndrome is.  It. just. is.  It's tangible, unchangeable, real.  It is our reality and the reality of our children and loved ones, and no matter how much we may rue some of the aspects of Down syndrome, we celebrate and embrace so many others. 

I've read, both on the Down syndrome Babycenter message boards and on other people's blogs in the last few weeks, people questioning whenWhen will they be "okay" with Down syndrome?  When will it stop being the first thing they see when they look at their children?  When will their children be "normal" and more like their typically-developing peers? 

I reiterate...Down syndrome is.  At first, in the beginning, I think I can safely say, pretty much all of us live and breathe it.  It's what we see when we look at our new children.  It's the first thing we think of in the morning, the fear of the future creating a large, iron ball like a huge fist in our stomachs, the last thing we think of at night, set to punctuate our dreams with uneasiness.  And the time in between?  Sadness.  I spent many a bottle feeding crying in my rocking chair, baby blissfully unaware.

I thought I saw Down syndrome everywhere.  It was present in the person whose back and shoulders I saw turning a corner, in the new babies I saw being pushed in strollers by their mothers, in the background extras on a television show.  Who knows, maybe I did!  But, more likely, I probably didn't

With time...TIME...the reality took more of a back seat.  Oh, Down syndrome was still there, but did I see it everywhere? 


My brain, once again, became crowded with everyday banality, the trivialities of this, that and the other thing that come up to occupy the space.  The day in and day out of being a mother, of working a full-time job, of being me. 

6 years into this adventure Down syndrome still is.  It. just. is.  I'm involved in my local DSA, I read blogs, am friends on Facebook with countless others whose lives have been touched by it...

But when I look at my daughter, I no longer see it

I see a precocious 6-year old girl, one that has a brilliant sense of humor, is smart, sweet, stubborn, silly, and has a smile that can light up the world.  Do I sugar-coat our lives on my blog?  Eh, that depends.  Because I don't. see. it.  My blog usually details some of the ho-hum, regular, every day things that we do.  These things do not center themselves around Down syndrome.  Am I shouting about how proud I am that she's hit a particular milestone?  Am I frustrated on occasion about something she can't do, or about a challenge we've had with something that is as a result of one of the aspects of Down syndrome?  Sure.  Because Down syndrome is still there.  My photos and stories are of my little girl enjoying her life, learning new things, having new experiences.  If that means that I'm sugar coating stuff, ignoring Down syndrome, so be it.  Why should I show the dust bunnies under the bed, the unkempt hair, the burnt toast?  That's not what it's about. 

And so, in the absence of Down syndrome from the surface of our day-to-day existence, while it still lives there, we move on.  We live our lives.  We do what we have to do to keep things running at the necessary pace.  We do what we want to do to enjoy ourselves and be productive.  We wake up, we go about our days, we go to sleep, we start it all over again.  We do not, any longer, live and breathe Down syndrome.

It's there because it is.  We are who we are because we can be.    

Tuesday, June 26, 2012

Sprinkler Fun

Maybe it's just me, but it really wouldn't be summer without getting to play in a sprinkler in the yard.  When I was growing up it was the best way to beat the summer heat, and it became a bit of a social event when the neighborhood kids would join in.  It's like there was a neon sign hanging over the house:  Sprinkler = ON

On Sunday we went to Home Depot specifically to get a new sprinkler.  Oh, and I was reminded that sprinklers are traditionally, at least, for watering grass.  Or something like that.  But for us, the owners of a very, very green yard (it's the weeds that are green, not grass, and weeds grow too fast for us to want to encourage them by regular watering), a sprinkler is just a toy.  This particular one was pretty cool, though, with multiple settings for different sprays.  We found one that was agreeable to the Princess, and let her loose.

Here's a little bit of photo overload for ya... 

The skirt and the shoes eventually had to come off.

Monday, June 25, 2012


The last day of school was all a bit much for Samantha.  I was grateful that there was no "graduation" ceremony or anything else I'd feel crappy about having crying-child pictures from.  There was just a class party.  Parties, as I have discovered over the years, just aren't Sammi's thing.  I mean, take a perfectly safe, familiar classroom, a room in which she spends every single weekday, an environment that is pretty much the same, day in and day out.  Then add a bunch of grown ups, crumple it up, shake it until pulverized, gargle it and then spit it out, and that's kind of what it must've felt like to her. 

She'd been having an ordinary day to begin with.  But then, around 9:30, some parents started to arrive.  Including us.  She took one look at us, then burst into tears.  I think she knew what was coming.  Complete discombobulation.  The kid actually refused ice cream.  With sprinkles on top.  That doesn't happen.  Finally, after enough was enough, we took her outside to the blacktop playground that's accessible from a door in the classroom.

And that was all she needed. 

Actually, all the kids and parents came outside within a couple of minutes, and I think they were all pretty relieved to be out there, but none so much as my baby girl.  And, being that it was probably the most beautiful day of the year so far, who could blame them?  Sammi was in her element.   

So, as I so often do, I'm going back to talk about one of those things Sammi is able to do, quite well, actually, that we had absolutely no idea she could do.  One of those rites of passage that every little girlie girl worth her salt must be able to do.


She joined her classmates on the hopscotch form, and, unlike my last experience seeing her do hopscotch, about a year ago, she was amazing.  Switching from two feet to one foot, alternating that one foot from an occasional right (her weakest side, funny being that she's a "righty") to an occasional left flawlessly, my jaw dropped.  Apparently even the PT had been susprised to see her do that recently.  Building her core strength has been a battle, especially given that we've been concerned about staircase safety for the last 3 years.  But finally, she was ready to go.  Finally, we've given her free reign of the stairs.  Finally she's proven to us what she can do and surprised the heck out of me. 

It was beautiful.

Summer school starts today, for the next 5 weeks.  She's in a fully-inclusive 1st grade-going-into-2nd grade class (there is no inclusive Kindergarten-going-into-1st-grade summer school), and nobody felt she should be in a special education summer school setting (nothing against it, but we felt she needed the challenge and preparation for 1st grade that this setting would give her).  She'll have one of her beloved resource teachers accompanying her every day, as she will be again in September.  So I'm not worried about her being in an unfamiliar classroom (although it's in her home school) with unfamiliar children - the consistency of having Mrs. D with her will probably help her settle right in. 

We are thankful for the opportunity. 

Update:  Gotta update the summer school situation later, but let's just say it's nothing like what I just posted above.  We are. not. happy.  :-(  Blah.

Thursday, June 21, 2012

What Makes Me Happy...

It's obvious some of the things that make me happy, like, for instance, my family, our health, stuff like that.  But there are plenty of other random, little things that make me happy, too.  Those little things that I take for granted, but still enjoy, still smile about, those little things that put me at peace.

In absolutely no particular order whatsoever...

  • Hot water in the bathroom sink at work (there's nothing worse than sitting in ice-cold air conditioning all day then having to wash your hands in ice-cold water)

  • Samantha launching herself, airborne, into my arms when I arrive home from work every day  (this one actually gets a bit dangerous, as I usually have not had time to set my stuff down or even to crouch down, thus conking her in the head with bag/sunglasses/keys/umbrella - nothing worse than a good intention ending in tears...)

  • Warm sunshine and low humidity (this one's a package deal...must. go. together..., especially when in conjunction with open windows and light breezes, LOL)

  • Earl Grey tea (maybe one day I'll tell you the story of moving to London, living in near-poverty, re-using old Earl Grey tea bags...yeesh...I don't think I've told anyone about that - too embarassed...)

  • Getting to drink my coffee all. by. myself. in the morning while Steve and Samantha are still sleeping upstairs (this is a very rare pleasure, as Princess usually wakes up before I do most days)

  • Getting to use classic mom-isms (take this morning, for example:  I'm in the shower, Samantha comes into the bathroom, turns off the fan and the light, and starts to leave.  I fling open the curtain, glare at her, and say, in my most menacing-mommy voice, "Don't *make* me come out there!"  She stopped dead in her tracks, turned everything back on, and left to go play in her room - Success!) - I know this may not seem like much, but with only one child, this is definitely a joy to me.

  • Getting a good look at the photos I've just loaded off my camera and onto my computer

  • The smell of rosemary (I just have to run my fingers over the bush in the back yard whenever I walk past it)

  • Summer (this was not a love of mine back during my goth days...full makeup, heavily-product-laden hair, boots and black clothes do not make for a pleasant summer - more like torture)

  • Remembering childhood summers

  • Johann Sebastian Bach (and his equally-talented offspring)

  • My camera

  • Backyard wildlife (bugs, flowers, bunnies, foxes, whatever happens to be visible from my window)

  • Samantha's laughter, and her absolutely brilliant sense of humor - she really knows how to make me laugh!

There are so many more things I could mention.  I'm trying to make a mental note as they come to me, and will hopefully post more one day.  Thanks for indulging me!

Wednesday, June 20, 2012

Wednesday Special Needs/Disability Blog Hop: Say Cheese!

Happy Wednesday!  After a week of blissful slacking absence while at the beach last week and missing Meriah's Blog Hop, I'm back this week, and grateful that my hopelessly procrastinating brain and I don't have to think too hard for this one.  Fresh off yesterday's weighty topic of internet drama, I'm ready to add some cheese to my w(h)ine.  This week's Hop theme is "Say Cheese," providing fun pictures showing our connection to disability.  Easy peasy!!! 

While my connection to disability is not readily apparent in the pics below, my daughter is my connection, and my daughter should definitely be a movie star.  To be honest, Samantha actually has absolutely no clue what a movie star actually is, but I think she does get the concept of glitz and glamour and feeling beautiful.  That's not to say she ever doesn't feel beautiful, but when she does that little extra something, she's very proud, and ready to pass it along to the world to see. 

Thanks to Heather and Zoey's sweet, sweet gift they sent a few months ago, the book, Birdie's Big Girl Shoes, where Birdie put her mother's fancy, schmancy, big-heeled, pointy-toed shoes on, and struts around feeling just like a movie star, Samantha gets it.  While we were at the beach, we bought her a new pair of sunglasses, something she's been needing for some time now.  I gasped when I put them on her, and said, Sammi!  You look just like a... and she filled in the blank with, Movie Star!!

Yep, she gets it. 

The best part about these sunglasses, other than the fact that they match most of her clothes?  Well, with the aversion of her eyes when posing for the camera as of late, you can't tell if she's looking at the camera directly or not with her eyes covered!  Looks like she's looking right at'tcha, huh? 

I'll take it. 

Plenty of cheese here. 

Tuesday, June 19, 2012

The Absence of Drama

I don't like drama.  I stay away from it whenever possible, and I certainly don't intentionally cause it (some of you may be snickering, but seriously, drama is the last thing I ever want!  PMS-fueled ramblings can occasionally get me into a spot of trouble along the way, though...).  But there are certain places that just breed drama, no matter how innocuous they may seem at a glance, no matter how innocently they start.  And those places are usually found on, you guessed it, Facebook.

I have been conspicuously absent from FB in the last few months.  I post from time to time, usually from my phone, and visit my newsfeed periodically, commenting on this or that, but never digging very deep.  First of all, I really don't have the time.  Second, I don't necessarily have the inclination.  I care a lot about many of the people I have there, whether friends IRL or "friends" in the virtual world, but in reality can't know what each and every one of them is doing from one minute to the next.  And if I miss a major event in someone's life (which is a huge liklihood), I feel bad, but don't know quite how else to find out about it other than randomly and by accident while doing my occasional surfing.  Or from their blogs, if they happen to have one.   So my apologies in advance...  Don't get me wrong - I do love Facebook, and know that when I have the time, I can actually do some catching up.  I love to be there to offer words of support, condolence, or excitement over an accomplishment when I can.

If you're on Facebook, I'm sure you've been bombarded by the masses of group additions.  One of the changes Facebook made last year was the ability for anyone to add you to a group or event of their choice, whether or not you chose to be there.  This sets off a chain of events involving my e-mail inbox getting completely slammed with each. and. every. notification. someone. sends. to. the. group.  Until I can get to a computer, log on to Facebook, and either decline the event or shut off the notifications to the group.  Something I am unable to do from my cell phone, of course.  And while I'm happy to have these groups in my sidebar, running silently in the background, I don't often visit, primarily for the reason below. 

Almost weekly I hear about some new drama between clashing personalities and opinions that has taken place in one of these groups, or on someone's wall.  And these dramas start creating dividing lines, dissention, anger, anxiety, and general discontent.  The Facebook experience becomes sullied, and its primary purpose of uniting people is lost.  Just because we all share a connection to someone with the extra 21st chromosome doesn't mean we all have to be friends.  Or even to like each other.  But we still need to remember the most important R-Word we preach - Respect.  We still need to respect each other, respect each other's opinions.  And if those flare-ups do occur, please save yourselves some embarrassment and take it to a private message, rather than broadcasting in a public forum. 

I may be sounding old-fashioned and unrealistic here, but this is why I spend less and less time on Facebook.  I have my own opinions about things, to be sure.  But not at the expense of hurting someone else.  Most often with me, what you see is what you get.  No hidden agendas, no malice.  I'm super-sensitive and can be easily hurt, so my solution is to avoid the things that make me uncomfortable or insecure.  I'm sure I'm not the only one of my 1500-something Facebook "friends" who feels this way.  Living life as drama-free as I can keeps me healthy, keeps me present for myself and for my family, keeps me happy.

Who wouldn't want that?  

I think I'm due for a things that make me happy post soon. 

Just because.

Monday, June 18, 2012

On Beach Tags and Visitors

Last Tuesday, our 4th day at the beach, was a real weather disappointment.  We had plans for two sets of visitors to come, both of whom would have loved to have been able to lounge on the toasty sand in the sun, to have been able to put their feet in the water and enjoy the stark contrast of hot and cold.  Sadly, the day started out with grey skies, raging water with relentless and threatening breakers crashing on the shore, and a strong wind.  My aunt and my cousin, who lives in New Zealand and is home for a month or so to visit, came by in the morning.  It wasn't yet raining, so we took a walk on the empty beach.

My aunt and my cousin.

My cousin, Jenny, who happens to be a truly *amazing* and talented artist.  She had painted Samantha's portrait a few times in the past (see here and here), and has won a prestigious award for one of her paintings of her!

Now something that absolutely baffles me is the beach tag system there.  I'd heard someone say they thought that New Jersey is the only state that still institutes the use of beach tags, and someone else said they thought that that particular beach is the only one left that still uses the tags.  I haven't yet looked it up to confirm.  But how it works is that each season you can purchase tags, with pins, that are good for the season, or you can buy a shorter length tag that's good for a day or two.  These tags are what allow you to have access to the beach during the bulk of the daylight hours.  There are people stationed at the walkway entrances to the beach who inspect you for a valid tag, and if you don't have one, they can sell you one on the spot.  Then there are other people who patrol the beach to make sure each and every person over the age of 12 is displaying their tag.  Never mind that the pin leaves ragged holes in your swimsuit or cover up...

On Tuesday morning, amid the clouds, and the wind, and the raging sea, with the beach all but empty of any sign of human life, we left our tags in the condo and went for a walk.  And on Tuesday morning, amid the clouds, and the wind, and the raging sea, with the beach all but empty of any sign of human life, the beach tag lady, seated in her chair at the walkway entrance, nose in her book, demanded to see our tags. 

Really?  I just didn't get the point.  If it's to make money, trust me, nobody in their right mind would be coming to the beach in that weather without already being in possession of a tag!  Who would actually want to buy a tag, just to spend a few minutes walking back and forth? 

Even with my insistence that we would make it a very quick walk down to the water and back, just showing my-cousin-who-lives-in-New-Zealand (and seriously, she lives too far inland to get to visit the beach there very often), she hemmed and hawed, holding her ground, finally relenting when I gave her my solemn promise, completely prepared to hunt down a bible and raise my right hand. 

However, as we began to stroll, enjoying the quiet and solitude, chatting about this and that, I realized that I was starting to go against my promise, and to keep the peace and still keep my word in good faith, I knew that I really should go back and get our tags.  So I did, running all the way across the sand, heart trying to thump its way out of my chest, camera hugged tightly under my arm.  And what did I get in return when I handed over those tags?  An eye raised over the tag-Nazi's book, and a curt thank you

Half an hour later I got a good giggle as I saw her huddled under her blanket, the rain coming down steadily. 

Our next visitors, Kelli, Colin and Kailey, arrived a short time later.  We'd met them the last time we stayed at the beach there, nearly 2 years ago, and after keeping up with each others' lives via Facebook and our blogs, it was great to be able to spend time in person again!

Colin hadn't been walking when we saw him last, and Kelli had only just found out she was pregnant with Kailey.  Frozen cappuccinos in hand, courtesy of Wawa and my occasional errand-runner husband, we were ready to shoot the breeze and catch up in real time. 

Happy, well-caffeinated mommies, tired, completely *uncaffeinated* children...

I just loooove this handsome face!! (note the frozen cappuccino exchanging hands in the background...)

I love Kailey's wristband, so visible in this pic.

Cougar, or just happy to have a real, live doll to play with?

Yes, they're watching TV.  So sue me.

Sunday, June 17, 2012


Yes, I am ashamed to admit that I forgot Father's Day this year.  I can certainly make a whole slew of excuses pertaining to how distracted I was by being on vacation and then returning to work on Friday, then distracted by a morning playdate and an evening with my next door neighbor at Riverdance yesterday.  I could say that we'd already bought ourselves a joint Mother's Day/Father's Day present (which we did), so I had put it out of my mind as being something coming up.  I could say that every day is Father's Day!  But that would be corny. 

When I woke up this morning, I did remember it was Father's Day, and I also remembered that I hadn't gotten a card for him from either myself or Samantha.  After kissing him good morning and wishing him a Happy Father's Day and running downstairs to expedite the delivery of coffee from machine to bed, I quietly told Samantha what day it was, and instructed her in the making of a card.  I guess crayons and construction paper can be acceptable, so long as it's used by my 6 year old and not by me...  When she'd finished, topping the card off with some stickers of Daddy Pig, she proudly brought it into the bedroom with a sweet, innocent "Happy Father's Day!" greeting that sounds so lovely coming from her.

I've always loved the photo above.  You can see how tentative he his, holding this little bundle of his own flesh and blood, of human cells, of responsibility in it's highest, most auspicious, most critical definition.  You can see how careful he is, possibly still in shock at this whole new experience that was to change our lives forever, in the most amazing way.  He's the one that provided the strength and the voice of calm and reason when receiving Samantha's diagnosis, giving the crucial transfusion of strength and calm and reason to me in turn. 

Happy 7th Father's Day to Steve, an amazing father to our amazing daughter!

We love you!


Thursday, June 14, 2012

And *Some* of the Rest...

Day 2, Sunday, was phenominally busy.  Somehow we managed to cram breakfast out, a boardwalk jaunt in a surrey with a yellow top, a visit to the playground, time on the beach, Sammi's first ride on a rollercoaster, and dinner with my folks into about 12 hours.  Bearing in mind that anything involving the word "beach" also involves showers, hair washing and hair drying, never a terribly quick process for either Samantha or myself. 

The high season here doesn't begin until next week, when the New Jersey school system lets out for the summer.  As such, many businesses still are not open during the week.  Frustrating, but understandable, given the lack of people wandering around here.  But Sunday, as part of the weekend, was still pretty well-populated by visitors, and most doors to food and entertainment were open.  The little bike shop, with its red and yellow surreys lined up along the wall outside, was open, as it had been 2 years ago when we were here in the off-season before.  And 8:20 in the morning is an excellent time for a ride on the boardwalk, jockying for space only with dog walkers and runners, the sun not so high yet and the temperature still tolerable.


Samantha still fit comfortably in the basket at the front, and when she tired of that and wanted to join us on the bench, she sat still, crossing her ankles to keep her feet away from the pedals while we worked to propel forward.  1 hour was plenty of time for an enjoyable ride, and after returning it to the shop, we went for a drive to the playground in town.  After playground, we hit the beach, noting that, while crowded, there were none of the drunk students from the day before, and we could play without fear of getting beaned by a football.  The water was (relatively) warm, which in my mind just means that after getting over the initial shock and lowering my body temperature to match, I found it very pleasant.  Samantha loves playing in the waves, being held by me as I jump over the breakers rolling towards us.  And more than anything, she loves just sitting in the sand and digging, placing dirt into a bucket, leveling it off, dumping it out into the shape of a tower, knocking the tower over, and beginning the process again.  But do note, if you ever build something you are proud of, be it tower of sand, blocks, sticks, cards, whatever, nothing is sacred to her, and it will not last long.

After showers, we took advantage of the still-weekend-only hours at a local children's ride "pier."  It's not really a pier, and is in the center of town next to Fish Alley, on the bay, where local fishermen bring in their catches, but it's got lots of rides for little kids, including a mini-rollercoaster.  The ticket prices were exorbitant, the rides way too short, and our time there, blowing through $20 in about 20 minutes, was extremely disappointing, but Samantha enjoyed the rides (most of which I had to ride with her), and was a real rock star on the rollercoaster, this being her first time on one.

Monday was our last beach day, the sun poking through just long enough to give me a painful sunburn, before poor weather arrived to mar the next 2 days.  50-block only works when the wind doesn't blow the spray away before it can touch your skin.  I don't actually remember what else we did on Monday.  I don't think it was all that much, although my parents came by to take Samantha out to dinner while Steve and I went out on our own for a few hours.

Tuesday, which included a day of fun visitors, will be for another post.  I've rabbited on too much here already, and suspect I can hear you snoring...

Tuesday, June 12, 2012

CPS vs. the Tooth Fairy

I'm lying in bed right now, at this freakishly early hour, watching the grey and angry ocean out the window, the waves crashing on the shore uninvitingly.  The constant fire on my back from the sunburn I sustained yesterday (note to self:  When applying spray sunscreen to your back in a breezy environment, have someone else do it for you so the precious 50-block doesn't disappear off into the air, or onto a passing seagull) is lessened only by the fact that my sweet Princess is sitting on the bed with me cuddling a new toy and perusing the photos and videos on my cell phone.  Oh, and the pain is further lessened by the 16 oz. Wawa coffee sitting on the bedside table, of course. 

I don't know what it is about vacations and loose teeth. 

Samantha's 4th loose tooth began to present itself as a little bit wiggly about a month ago.  I have to remind myself frequently to feel all of the teeth in her mouth periodically to see if any are getting ready to go.  The concept of losing teeth is still strange to me, when it took so darn long to get the ones she has in the first place.  But they seem to (so far) grow back pretty quickly, so with that I am satisfied.  So that 4th loose tooth, just a little bit wiggly, didn't seem that it would be ready to go for quite some time.  I figured we'd have another month, most likely. 

Sunday, as we sat on the beach, Samantha thoroughly occupied with filling and dumping buckets of sand and mud and water, thoroughly happy to throw herself onto her stomach into self-dug tidal pools full of sand fleas and baby hermit crabs, loose teeth were the last things on my mind.  More, I was keeping a close eye out for the previous day's drunk college students, hoping to get a good laugh at seeing them cradling their sore heads, nursing bottles of Gatorade.  But, much to my disappointment, they were nowhere to be seen.  Samantha and I returned to our blanket so we could dry off and gather our things to return to the condo.  Tired and just a little bit giddy, she was having a hard time listening, nothing terribly unusual these days.  As she threw herself at Steve, who was sitting in a beach chair, he put his hand out to stop her from crashing into him and knocking him over, but, in a lightning-fast moment of coincidence, she lowered her head directly into the path of his out-stretching arm, causing him to clock her in the face.

Tears, tears, tears...  And poor Steve, he felt just awful.

We checked her out, and she looked fine, the tears transcending to sniffles, then back to smiles again as we continued to gather our belongings.  Samantha then took a sandy hand and wiped her face with it, realizing in that instant that sand does not taste good, nor does it feel good when entering eyes.  Before the next round of tears could start, I grabbed a (slightly sandy) towel and began to wipe her mouth, but, again, she lurched forward as I reached out, and hand connected with mouth.


This time, she opened her mouth and blood poured out. 

Through her tears I was able to coax her to let me take a look and saw that the tooth was hanging by a thread.  Before she reached into her mouth and handed me the tooth. 


As Steve took Sammi down to the water to help her rinse with some salt water, I held up the tooth and joked with some women the next blanket over about how the beach is not the ideal place to lose one of those.  One of the women kindly offered me a baggie to put it in.

And so Steve and I feel terrible that we both had to beat our child to get her tooth, and are hoping that the Tooth Fairy will win this round and we won't find CPS (Child Protective Services) waiting at our doorstep when we return home to Virginia.  And Samantha harbors no ill feelings, proud that she's been so brave through yet another episode of this long, drawn-out right of passage. 

Monday, June 11, 2012

So I Lied...

Um, yeah, so I lied the other day when I said I'd be gone all week with no internet access.  Thanks to a work colleague who lent me her boyfriend's MiFi, we have a nice, healthy, strong signal.  Which is a blessing and a curse.  A blessing because we can still be blissfully tethered to the outside world (and the rolling dramas on the tempestuous sea that is Facebook, of course), but a curse because it means that valuable time ordinarily spent outdoors or in each other's company engaging in scintillating conversation, are spent in front of a computer/tablet/phone.  Eh, such is life.

So, here I am, on this cloudy, foggy, breezy morning following two of the most gorgeous beach days imaginable, exercising my right to blog, even when on vacation.

We have had several of the busiest days we've seen in a long, long time.  After Samantha's last day of Kindergarten, pictures from which will follow eventually, we quickly packed the car full to the roof of all of our warm-weather wear and portable electronic devices (uh, I think those may have comprised the bulk of the transportable items) and drove north to the beach of my childhood, up in South Jersey.  My uncle generously lent us the use of his spacious 2-bedroom condo for the week, where we could enjoy only slightly obstructed beach views and a short 20-yard walk to the boardwalk and the hot sand beyond.  On the other side, we could enjoy a short 20-yard walk to the Wawa.  For any of you following along on Facebook, you may be wondering which walk I'm more excited about.  And, to be honest, while I absolutely love the beach, it's a toss-up.  Feel free to read the article I just linked to, and be jealous...

First day, we drove 4 hours north and settled onto the beach, we soaked in some rays, covered ourselves from head to bum in sand, splashed around in in the waves, and tried to avoid the throngs of drunk college students, most of whom were likely not old enough to drink, who swarmed the coastline.  Actually, Steve witnessed them pouring vodka into soda cans.  I eavesdropped (and laughed maniacally, silently, in my head) on one young man, slurring his words pathetically, as he tried to chat up a group of young women sitting behind us.  It was actually his use of the R-word that made me turn my head.  I think sometimes I have some sort of "R-word" radar.  I'm sure most of you know exactly what I'm talking about.  Once the drunk guys started throwing a football around in the highest-traffic areas, hitting an old lady in the head as she strolled along the beach with her husband, narrowly missing Samantha not once, but twice, we stopped thinking it was amusing, and Steve shared his own word, of the 4-letter variety, with one of them, halting their reckless activity.  After showering and changing, we met up with my parents, who live nearby, for dinner.

I'll leave it here for now, with a couple of cell phone pics.  I'll recap the action-packed Day 2 in another post, as it requires a few photos. 

Anyway, my compulsion these days requires that I feel guilt if I miss a M-Th of blog-posting, so, boring post or otherwise, the show must go on.  Day 3, and we've woken up to a thick, rolling fog.  Not sure what the day has in store, but even if the beach itself is not in the cards, we've got plenty more to do!


Thursday, June 7, 2012

Outta Here!


Today will likely be my last post for the next week or so, while we're on vacation in the land of internet-free living.  Well, not by choice, anyway.  We'll be heading to the beach and just don't happen to have internet access while we're gone (unless we can leech a wireless signal from one of the neighbors...).  Maybe it'll be liberating, maybe I'll love it.  Maybe I'll be climbing the walls in desperation, composing all of my blog posts in Word on a static machine.  But at least I can still update my FB status and post pics from my phone with a simple text message.

As I cautioned you all last year when we went away on vacation, don't bother trying to rob our house - my neighbors might be packing heat, and all you'd find here would be a lonely cat who'd be thrilled to see you.  Oh, and probably enough dust and other allergens to send you running for the hills. 

I know I still need to post birthday party pics, and I'm terribly torn up about missing the next Special Needs Blog Hop on Wednesday, but trust me, I probably won't be thinking of any of you all that much while I'm sitting on the beach, eating Kohr Bros. frozen custard (if you've never had it, it's like heaven on a cone), watching the ocean, listening to the seagulls, and smelling the overwhelming odeur of coconut-infused, baking human flesh.

I'll just leave you with that thought for now. 


Wednesday, June 6, 2012

Wednesday Special Needs Blog Hop: Downs Kid? (and other words of brilliance)

This little snippet of conversation between Spock and Kirk illustrates Meriah's Blog Hop topic this week:  what have people said that has gotten under your skin about something that relates to your connection with disability - and what do you want them to say instead?

I'm not the sort of person to call out a well-meaning person on something they've said that isn't totally appropriate in the special needs community.  I mean, how are they supposed to know?  They think they're saying something nice, but there's a whole book of more PC jargon out there that they can't have been expected to read.  Those of us in the know hear what they say, we feel the nails on the chalkboard, and we should just let it go, which I do.  Why alienate someone over that? 

That being said, that nails-on-the-chalkboard effect still lingers when someone says "Downs kid," or "Down syndrome children."  Want to make me really squirm (another one for my Words I Hate list...) in my seat in discomfort?  Use the words high functioning or low functioning in a sentence.  No, I won't call you out on it.  Actually, you may be surprised that I'll actually be speechless and won't say anything at all.  I'll start fidgeting, look down, desperately trying to think of some appropriate way to respond.  Usually I'll just change the subject right then and there.  

I mean, what the heck do you say to that?  Thank you?  Not appropriate.  I don't think people can be viewed in terms of functionality, especially as children.  Do people, not in the SN community, view children who can't speak as low functioning?  Apraxia is a real condition that prevents someone from being able to mimic sounds.  Doesn't mean they can't function. Or that they aren't smart.  It can be overcome.  Do people, not in the SN community, view people who don't speak clearly as low functioning?  By nature of their physical make-up, they are unable to speak clearly.  Nothing to do with their mental abilities.  Do people, not in the SN community, view a person as high functioning or low functioning based on their ability to engage them, with their eyes, their smile, their body language?  Well, you know what?  My kid's a smart cookie, but catch her at a bad time, when any particular set of circumstances happen to come together randomly, and she may be completely shut down.  Head down, arms limp at her side, eyes on the floor, tongue out, not talking.  Does this mean someone will view her as low functioning

This term is based on nothing other than a need for people to categorize, to classify, to judge.  While the well-meaning person may just be wanting to pay a compliment, I think the better way to go about it would be to say, "Your daughter is so bright!"  And yes, they'll get an answer from me then.

"Thank you."

Tuesday, June 5, 2012

The Last Week

I'm in complete disbelief that it's already the last week of school.  The last week of Kindergarten.  It's bittersweet, really.  We'll miss her amazing classroom teacher, Mrs. R., as she has believed in our little girl in a way I didn't think existed.  As the mother of an adult child with physical and intellectual disabilities, she gets it in a way that I don't think most people do.  She knows how to teach to children, to encourage them, to guide them along the path they are forging to their futures.  Sure, you could say that about most teachers, but this one's different.

All the trepidation we had going into a typical public school Kindergarten setting melted away on the first day when we saw how well-supported she was by her teachers, how instantly-accepted she was by her peers.  And watching how she's thrived in that setting, and hearing how everyone is 100% behind the idea of her moving on to 1st grade, we can easily say what an amazing experience this whole year has been. 

Moving forward, staying in the same school, having the same Resource teachers and classroom support from the incredible two Mrs. Ds, interacting with many of the same children she's been with all year, I feel confident that next year will be just as rewarding.  My only fears come from the fact that she will be with many other children that she does not know, those children from the PM Kindy sessions that we never, ever see.  But I'm sure she'll win them over in no time. 

We're off for a bit after school ends, before Sammi begins her summer school run for 5 weeks, where again, she'll be meeting a whole new group of (older) children, 1st graders moving into 2nd (there is no Kindy summer school program).  I'm looking forward to seeing what she'll accomplish there, how it will help build her confidence and flexibility.  Heh, I hope.

In this last week of school, Samantha has been given charge of Maggie, the classroom bear.  Since February, Maggie has been going on short adventures with all of the other students in the class.  And, while her clothes are seriously in need of a wash, I have to put my germ phobia aside for a bit and enjoy how Samantha has embraced the responsibility of making sure Maggie has a good time.  Last night they played piano.  Today they'll be going to the bagel store.  Tomorrow we'll be prying Sammi's death grip off the bear as we try to explain to her that Maggie has to go back to school now so she can have another adventure with someone else over the summer.  Most likely at the bottom of a box somewhere.  Or in a washing machine.    

Monday, June 4, 2012

Pretty Party Pics

So, sorry to disappoint, but there are no people in these pics today.  Those will come in a future post.  But I was pretty pleased with myself again this year (if I may say so myself!) putting Sammi's 6th birthday party together.  As with last year, I started pulling ideas and bits and pieces together several months in advance, once I decided on a theme.  Samantha, still at this age, really couldn't care less about what the theme is.  Last year I knew that she was really into Olivia, and at that point in time, Olivia party stuff wasn't yet on the market (although the Party Store now has a section of it this year), so I made it.  This year she wasn't necessarily into anything in particular, so I took it upon myself to decide on a color theme, based on the colors in her room - turquoise, orange and pink floral.   

I had fun doing it, and am already looking forward to coming up with something for next year. 

Practical tip:  many thanks to April's (?) Parent's Magazing for showing me how to make these super-easy tissue paper flowers (I used crepe).  I made a garland out of some larger ones, then made small ones to attach to the goody "bags."  And thank you to Target and Michael's for these inexpensive and easy guest gifts.  Inside the metal pail was an orange pencil, a fat orange or turquoise floral pen, gummy fruit snacks, some fruit-flavored powder candy, and a pink or tuquoise butterfly-shaped lollipop.  Each one cost less than $3 to make. 

Enough of the heat of years past - I booked the park's pavilion for the morning so we could enjoy the shade and keep the food fresh.  But thanks to the previous night's storms, it was probably the most beautiful, dry, chilly (!), gorgeous morning ever.  The strong breeze brought the flower garland (below) down, but I just taped them to the posts.  All the flowers in the picture below were painted by me over the last few months.  The ones on the garland have both acrylic paint and glued-on bits of orange or turquoise string, craft paper, and construction paper.  Multi-media at its best.  :-)  The flowers stuck to the tablecloth were from a pack of blank flower stickers from Michael's, painted by me with acrylics.  If you've never used acrylic paint before, it's the best.  Easy to clean, dries quickly, gives you a nice, solid coverage on almost any surface, including cloth.  Oh, and you can buy it in about a million different colors at the craft store for @.89 each.

This photo was taken before I put all the food out, and was just trying to keep the tablecloth from blowing away.  Food wasn't terribly creative anyway.  Tortilla (gluten-free), potato and rice-cracker (also gluten-free) chips, salsa, goldfish, fruit salad, pizza... 

The first year we had the party at the playground, the Papa John's pizza place I ordered from told me they wouldn't deliver to a park.  I managed to convince them that they had to, and now, every time I call them and give them my cell number, they have the playground's address in their system associated with it.  No problems since!

I am so going to book the pavilion again next year.  There was another birthday party going on at the picnic tables below.  The mother of the birthday boy there told me I'd beaten her to it this year.  Whew!

While we ordered a regular cake from the supermarket, my mother made her totally delicious cupcakes, using orange and turquoise frosting.  They were beautiful!!!  And I made the cupcake toppers using packs of little orange and blue flowers from the dollar bins at Michael's, and gluing colored toothpicks to them. 

I will have more pics soon, I promise!