Defiance

While the ability of a child to cross their arms, stomp their feet, turn their back on you, narrow their eyes, and, of course, shout No! with the full force of an angry little monster who thinks it owns the world, is frustrating beyond all belief to the parents and caregivers on the receiving end, it is, somehow, in some twisted, masochistic way, still refreshingly typical. 

I'm not condoning it, nor am I celebrating it, really.  It's typical childhood behavior.  I'm glad of that.  It's not specifically unique to my child, or to Down syndrome.  It's unique to children (oh, okay, I know plenty of adults that may exhibit this behavior, too...), in general.  And did I already mention that it's frustrating beyond all belief? 

Samantha's defiance at home usually has a reason behind it.  I don't always fully understand the reason, but I can usually figure it out for the most part.  And then I usually antagonize her a bit and make it worse, digging deeper, getting in her face to demand answers and compliance, when really, I should just leave her alone for a bit to stew in her own misery.  But when it comes to needing to get ready for school so we can get out of the door and get her there before the 3rd bell, there is no place for defiance and the delays it inevitably causes.

Defiance, for Samantha, usually stems from her own internal sense of shame.  She knows she's done something wrong, she knows she's been punished for it, and she knows we still need to talk about it to ensure the situation is resolved.  But she hates to admit to wrong-doing.  She'd rather shut down and turn her back, her eyes dark with (benign) malice, arms crossed and locked to her sides.

And then...she breaks.

She knows.  She admits.  She cries.  She apologizes.  And then, with a hug you never, ever want to end, a painstakingly hesitant, sad, kiss of remorse as she looks into your eyes and agrees to behave next time (oh, how often this plays out), it is over.  And then, with the innocence of a child who doesn't understand that we adults know all, and can magically see the hints of ulterior motive, she asks to watch TV/play with her tablet/read her books/do whatever privilege had previously been taken away.  Ya gotta laugh. 

The innocence of a child. 

Can't beat that.

Road Runner (minus the road)

I am what you'd consider an older mom.  Those words don't leave my mouth without stumbling, tangling up on the tip of my tongue as they leave a funny, unfamiliar taste.  In my mind, I'm still under 30, idealistic, silly, and so very immature.  Sometimes, when I'm with other mothers who are my age or younger, I feel...wrong.  Like not quite worthy of being in their stately presences, these women who seem to have it all together, who take responsibility seriously and see the world in a different, more serious light.  I don't know what it is.  Perhaps it's because I only have one child and was allowed to be a kid for so much longer than many of them.  Perhaps it's because I'm missing some critical part of my genetic make-up that says to most people, Grow up, damnit!  I often feel like I don't have anything in common with these people, like 1985 is still calling my name (although not my wardrobe, certainly...), like I can giggle like the best of the 17 year olds out there, like I can still eat whatever I want and not gain weight...  Maybe these other moms feel the same as I do inside, and maybe they, too, feel like they need to play at being grown-ups for the sake of the rest of us.  I was so, so flattered at NDSC this summer when a mother of a young lady with Down syndrome asked me, "So, are you a sibling?"  Flattered, and speechless.  Maybe it was what I was wearing...

But whatever...as the old adage says, you're as old as you feel. 

Ain't that the truth.

And, in the last couple of years, I've been feeling pretty damn old.  Well, at least my body has. 

After I had Samantha, I rejoiced in the fact that for the next 2 years, I managed to get rid of all of the baby fat, to get my body into some semblance of what it had been before.  And I managed to do it without actually doing anything.  Can't credit breastfeeding - only did that for about 4 months.  Guess it was just my super-fabulous genetic ability to unconsciously control my metabolism.

And, after changing jobs 5 years ago (oh, and hitting the big 4-0), after leaving the rigors of fast-paced retail management for a desk job in which sitting on my ass is pretty much the sum total of my activity for the day and all of my energy and weight loss is concentrated in my fingertips racing across my computer keyboard, I was proven wrong.

No longer super-fabulously slim, no longer super-fabulously able to eat what I wanted without feeling massive pangs of guilt and remorse, no longer super-fabulously comfortable in my new, flabby and expanding skin, I knew I had to do something.  When the aches and pains of a body at rest staying at rest were just too much, when the slim, active self trapped inside my body that no longer had time to exercise at all (wake, kid to school, work, kid to bed, dinner, bed) was just screaming for release, the stars aligned and I bought a treadmill from a friend.

Funny story, really - she had just posted that she was selling it when I texted her to let her know I was interested, but needed to consult my husband (who would surely tell me no way, no how do we have anywhere to put it).  I called him, and he shocked me by telling me, here at 2 days before our 22nd anniversary, that he had planned on buying me a treadmill for our anniversary (just because he knew I wanted one, not because he thought I needed one, btw...)!  The exchange of money for goods was made, we got it home, and crammed it into the basement...

...where I have absolutely surprised the hell out of myself by loving it and running nearly every day. 

Oh, how the birds sing when I exercise, how my muscles no longer ache when I drag my sorry body out of bed each morning, how productive I feel!  And, as I have discovered, having 60-some episodes of Breaking Bad on my DVR to watch on the TV directly in front of the treadmill makes my morning runs go by really quickly.  It's win/win.

And I am proud of myself.  I look forward to running every morning, a far cry from the efforts I used to make several years ago, for a brief moment in time, when I forced myself to wake at 4:45 and haul my half-asleep self to the gym to run on their treadmill.  I'm still too anxious to consider running on the road, though (I feel like the rules are all so different!  And what do I wear?), so at least for now, the machine will be it. 

I haven't weighed myself, have no baseline for comparison other than how I feel, and how my clothes fit.  Okay, well, how my clothes will surely fit soon.  It's only been a few weeks, after all.

And this older mom, this sedentary person who still lives with one foot in the past, is determined to continue to search for the fountain of youth in my physical being (I'm eternally grateful for the fountain of Revlon Colorsilk #49, available at my local CVS), determined to run a 5k sometime this spring (uh, if I can get over my fear of the road). 

And at this rate, it's gonna be a breeze.   

Madness, Part I

Placing the star



The first of the holiday hurdles have passed, and we seem to have come out of them mostly unscathed.  I ordered our holiday photo cards after receiving a deal too good to pass up, my company's holiday party took place at the Smithsonian National Air & Space Museum Udvar Hazy Center with great success last week after a year of meticulous planning, we hosted Thanksgiving dinner at our house (trust me when I say we never entertain, although we are perfectly well kitted out for it), and the halls have now been decked. 

Heading to dinner behind the Space Shuttle Discovery

 

Cocktails beside the SR71 Blackbird

For the first time ever, I took Sammi, along with one of her friends from school ("first time ever," meaning first time with one parent, two children - an exciting venture for me!), to a local parade on Black Friday, one we had attended last year and which passes directly below my office windows.  Sammi's friend had never been to a parade before, so a nice, cold, squished-in crouch on a sidewalk curb was the best way I knew how to give her the full-on parade experience, rather than hiding out in my company's 4th floor offices to view the festivities in warmth from above.  However, as is customary, Samantha was miserable in the cold and discomfort, and mean mommy felt like she was torturing her child.  Actually, I think she just whined when she was bored, meaning during the parts where there were no band/dance/song performances, because she clapped and smiled during all of those.  Juggling my camera (and my huge new lens!) and trying not to knock over the children sandwiched in beside me, I would periodically kneel into the street, mindful of not getting run over by an errant Jaguar or Mustang from the local Jaguar and Mustang fancier clubs (although I must say, that might be the way to go!), to see when the next entertaining segment might be likely to get to us and my daughter's tears to stop freezing onto her already wind-chapped cheeks.  For an hour and a half of the two-hour program, I promised her that Santa, signaling the grand finale, would be along any minute.  The second the parade ended, we made a beeline for my office to use the bathroom and to try to regain some feeling in our fingers and toes, and then headed out for pizza to soothe Sammi's sweet soul.

 

Stilt-walker

 

 

 

Mentioning to my husband that I had all-but-abandoned my blog, he gasped, and stated that no matter how hectic the holiday season, that's one thing that I really shouldn't abandon, one thing that I should find a way to maintain in some way.  I know what he means, but I also am thinking ahead to the second set of holiday hurdles that face me. 

We'll be traveling soon and need to bring gifts that are easy to pack.  Each Christmas I create a photo book of Sammi's year.  It makes an excellent gift, especially for our family far away, but the days are passing with a speed I'm not too comfortable with, and I am worried that my half-finished efforts will not be complete in enough time to get them ordered and in my hands before my deadline.  Oh, damn you, Shutterfly, for making such a beautifully creative interface for photo book design!  Custom Path, while extraordinarily lovely, is not exactly easy.  I'm one who overthinks each detail, and, if given the luxury of time, would take a whole year just to make the blasted thing.  But, in reality, about 3 or 4 days is all I have left.

Adding to the mix, Samantha seems to have been invited to enough birthday parties already this year to make up for last year's dearth.  It's crazy.  And, thankfully, these parties, for the most part, are being held in facilities that I know Samantha will enjoy.  They're not without their bumps along the path, but we're getting through them.  Amazingly, we've had to bow out of the party of one of her friends, a little girl we really like, because it overlaps with another event.  Feast or famine, baby!

Too much!  Too much! I say, grinning all the way.  This is what parenting is all about.  This is what life is all about. 

This is Christmas.

Calgon, take me away! 

When I Write

I had to make a bit of a sacrifice recently.  Nothing terrible, but it has affected my ability to blog.  I love blogging, don't get me wrong, but I'm primarily only able to write when I'm on my own in the mornings after dropping Samantha off at school, in that super-short window of opportunity while eating breakfast before having to rush off to get ready for work (which I end up late for anyway).  But 2 weeks ago, I came into possession of an item I've been longing for for a few years now.  Something that I'm hoping will open new doors, improve my life, and allow me to resurrect an old wardrobe that no longer fits my expanding middle. 

Wait for it...

(Hear the angels singing?...ahhhhhhhhhh...)

A treadmill.

2 years ago, I was getting up 3 days a week at 4:45am, going to the gym down the road, running on the treadmill for 20 minutes, and then rushing home again.  The clock-change that fall affected Samantha pretty hard, and she started waking far too early.  I needed to be home to run interference so she didn't wake Steve too early, or so I could direct her back to bed for another precious hour of needed sleep.  Then, once she'd completed that stage, Steve's job changed, and he needed to be up early for work and to leave before I would have gotten home from the gym.  Besides, I'd lost my motivation by that point.  I still wanted to do it, but I no longer wanted to get up so early, or to brave the elements outside, including a really cold car that wouldn't have time to warm up.

So, it just so happened, two days before our 22nd wedding anniversary, a friend posted that she was selling her treadmill. 

I was so excited!  I jumped on it immediately, but knew I'd have to check it with Steve, to be sure he wasn't going to freak out about the amount of space it would take up in our already-crammed basement.  When I asked him, he was oddly silent for a few moments.  Then he stated, grinning, that he had been contemplating getting me one for our anniversary anyway!  So, without the expense of a brand new treadmill, I obtained an awesome, fancy one from a trusted source, and it is now camped out directly in front of the big screen TV in the nice, cool bottom level of the house. 

And that, my friends (who may or may not be snoring at this point in my narrative), is why I am not likely to be blogging in the mornings anymore. 

Sadly, my time on the machine is still pretty limited.  I can get to 1 1/2 miles within my allotted time frame (still late to work, mind you...), but know I could do far more, as I'm still feeling pretty awesome at that point.  But I'll get there.  I'll make it happen, one way or another.  And my goal?

To run a 5k this spring.  Not competitively, of course, but just to say I did it. 

So, while I will blog when and where I can, I have a new love in my life, and it's making me far healthier than sitting on my butt, eating a bowl of cereal far bigger than the serving size stated on the side of the box, trying desperately to think of something worth writing about.  Hopefully I can find inspiration while running, during the commercials while watching the last 20-something DVR'd episodes of Breaking Bad.  Oh, who am I kidding?  I fast-forward the commercials. 

Guess inspiration will have to find me.

Self-Talk and the Battle of Wills

Samantha and I had a major battle of wills this morning over her clothes.

I'm actually one of those really lucky parents whose kid really doesn't care all that much what I put on her.  I think that's because, for the most part, barring the discomfort of a stiff fabric or of something slightly too small, she likes what I put on her.  I'm not tooting my own horn here, but I will say, she pretty much basks in the accolades she receives every day at school and from her sitter when she gets home in the afternoons.  Oh, and from complete strangers on the street/in the store/at the playground/etc. 

Happy to be of service to your healthy, growing ego, darling.  :-)

But one thing she will. not. tolerate. is changing what's already on her.  If I'm going to have her put something on, I darned-well better be absolutely sure it's what I want on her.  It had better match/fit/be appropriate and I had better be happy with it, or all hell breaks loose if I tell her something's gotta change. 

Which is what happened this morning.

That cute little Oilily jumper that I got for a song from consignment?  I've been having her wear it with stripey tights.  But this morning, as I watched her walk up the stairs to go brush her teeth after breakfast, I realized just how short, like inappropriately short, it actually is, and how awkward it probably has been the last two times she's worn it and had to go on the playground during recess. 

oops

So, new-found realization in mind, I told her she had to either put a pair of bike shorts on over top of the tights, or she had to put a pair of leggings on underneath instead.  She crossed her arms, pouted and shouted, "No!"  Of course she did. 

And, with my eye firmly on the ticking clock, the minute hand edging ever closer to the moment when we had to be out the door to get her to school and get me back home and on the treadmill before having to get ready for work, I made a decision.  Leggings. 

But she wanted none of it.  She refused to get up from her seat on the toilet lid.  Growing increasingly angry at my increasing desperation, she head-butted me (not on purpose, she just clenches up and moves sharply and suddenly when she's mad, but I happened to be a little too close, trying to force her to take her tights off).  I yelled.  And I think she felt bad, but pride wouldn't allow her to admit it.  She loosened up a bit, began to cry, hugged me, and then let me change her tights to leggings.  And then she took her place back on the toilet lid, refusing to wash her hands, brush her teeth, or wash her face. 

Have you ever heard of self-talk?  It's something people with Down syndrome commonly do.  They talk to themselves, rationalizing something they need to do or something they're feeling.  It helps to organize their thoughts and feelings, helps them to make the decisions they know, deep down, are right. 

Given that Samantha pretty much never stops talking, generally, I have had to listen a bit more closely recently to realize that she actually does engage in self-talk.  And, in the case of this morning's battle, I knew that if I left the bathroom and left her alone, she would work out what she needed to do, and would likely do it. 

I walked out, closed the door, and waited, listening.  At first there was only silence.  Then I heard her rustling as she stood up from her perch, then whispering something to herself about washing her hands, brushing her teeth, washing her face.  And then...magic.  The sound of running water.

I went downstairs.  A few minutes later, she joined me, clean and glowing, a smile on her face, ready for the short walk to school. 

Magic. 

Power to the People

The people have been heard! 

Sometimes something comes along or someone does something that you just roll your eyes at and say, "really?"  And sometimes that's all that's warranted - a non-committal response, a reaction of indredulity and mild annoyance, and something to file away in the back of your mind for later, if need be.  It could take the form of an off-color joke, or, perhaps, an insensitive remark by a well-meaning friend or relative (just using this as an example, relatives!  I don't think any of you have *ever* been insensitive, honest!). 

Sometimes something comes along or someone does something that requires action.  Something that isn't necessarily perceived as offensive to the majority, but something that requires the people of the minority to step in and be heard, to teach a lesson to that majority and bring them into the fold of understanding and sensitivity to the feelings of others.  The battle between team owner, Dan Snyder, and countless native tribes across the Americas over the name of the football team, the Washington Redskins, for example.  I'm not writing today to debate this particular topic, but let me just say, if it's offensive to someone, if it *hurts* an entire population of people and perpetuates negative stereotypes, DON'T DO IT. 

Same thing for the "r-word."  You know the word, the one that people throw around and think is funny, something to laugh at, a pejorative word of ridicule, and disdain.  A word people use without even thinking when joking with their friends, calling them retards for, perhaps, something silly they've done, or for not understanding something, or for no reason at all. 

I've written about the "r-word" (it doesn't deserve the capital letter at the beginning that so many people give it - it will always be fully-lower-case to me) many times before.  So have countless others.  And while I'm not one to call everyone out on it every time I hear it thrown around in conversation, I am one to bring it to attention when the situation warrants it.  There's a time and a place...

Now, this is not new news, and you've probably read about it over the past few days, but there was no time or place better than last week's revelation that Kat Von D, tattoo artist, TV personality and beauty line creator, had come out with a new lipstick color called Celebutard. 

Really?

Completely uncalled for.  And completely offensive.  And something had to be done.

Some may say, oh, whatever...the r-word/football team name/whateverisbeingscrutinizednow was just *fine* back in the day when it was a medical term/a newly-created team...what's all the fuss now?

Right.  It was "fine" with the majority.  It was "fine" before the collective consciousness of these disregarded and undervalued people/groups were realized, before these disregarded and undervalued members of society found their voices and begged to be heard. 

And now they're being heard.

Dave Hingsburger, upon learning of the offensively-titled lipstick, created his first Change.org petition, and, as they say, the rest is history.  After a whirlwind flurry on Facebook and other social media sites, retailers, such as JC Penny and Sephora, reacted quickly, pulling the product from their shelves and websites and issuing apologies.  I thought I'd read that Kat Von D was going to change the name, but now I can't find any reference to that.  Maybe I just dreamed it...  

The whole drama, from start to finish, was so fast that if you blinked, you likely missed it.  It was a true marvel, and one that I hope to see play out with similar success more and more, but to be needed less and less as high-profile people and companies, leading by example to the masses, start to check their words and think before using a word, about whether or not it would have harmful connotations.  Think about whether it would be hurtful to someone, even just one person.

The people have spoken, their voices heard, their power gaining strength.

My daughter is worth the fight.

Sad Face, Happy Face

I've been a little lazy with my camera lately.  Well, lazy isn't really the right word, since I've just not had any time.  I mean, look at my blog, for goodness sake, I post rarely, and what I do post has been pretty lackluster over the last few months.  Life is ordinary, life is good, Sammi is happy and learning lots at school, her language is exploding in ways we never thought we'd see, and I often just don't have anything to say.  I just go with the flow of things. 

I'm determined to make a bit more of an effort to get the camera out and about, but even if I get some great shots, I don't have much time to edit.  And seriously, I could post basic straight-out-of-camera (SOOC) snaps, or I could wait until I have time to make them actually glow, and it's worth waiting for, trust me. 

When did life become so busy?

The Aaaays to the Queues, Part II

At long last, here's part II of my Q&A.  Due to my inherent long-windedness, I have had to break this into yet another part, which I will post some time next week. 

Q.  What kinds of challenges did you guys face when Sammi was a newborn? Any feeding issues or health problems?

A. Samantha was born with a complete AV canal defect of her heart, which meant she needed to have open heart surgery at 4 months old.  As a result, she was a very, very sleepy baby, and that made feeding quite difficult.  We had to try every trick in the book to keep her awake for feedings, and we were obsessive about her weight gain.  We tried flicking her heels, using cold wet washcloths, etc. We were persistent, and while it seemed like torture (hers) and that every waking hour (ours) was spent trying to get her to feed, it paid off and she gained weight very well.  She never went into actual heart failure, and her surgery went pretty smoothly.  We had to go home from the hospital with oxygen for a few weeks, but that was the only issue. 

She had some sort of reflux from her earliest days through age 2.  Every meal came back up if she was not kept vertical and still for at least a half an hour afterwards.  She didn't have any discomfort or pain around this, so we never treated it with anything but patience. 

Other feeding issues were that Samantha wouldn't chew her food as she began to take in solids.  She'd try to swallow her food whole, then choke, so we kept her on Stage 2 baby foods and formula for the most part, along with foods that were cut into teeny, tiny bits, until she was 2 years old when things seemed to resolve themselves.  Coincidentally (perhaps), that was also the exact time that her reflux stopped, likely due to the change in diet as well as her newly-vertical stance (she began walking at 21 months).

Q.  When you sign Sammi up for extra curricular activities (at the library for example) do you do so based on her chronological age so she could be with her peers or her developmental age so her abilities would be similar to the other kids?

A.  Great question!  We didn't do the library-group thing, or any group things, for quite some time - she had some sensory issues around group activities, and would balk at them.  However, in the last 2 years, I have signed her up for Challenger baseball and TOPSoccer, both designed for children with special needs.  I would never dream of putting her into a group of her same-age peers at this point, to be honest.  I'd rather she not get frustrated and shut down, and rather, at least at this point, she not get bogged down by rules and regs.  I prefer that things are introduced to her as fun, and give her the gentle push she needs to learn.  I'm not sure how things will work as she grows up, yet.  Have to take each day as it comes.   

Q.  Today what scares you more and why - that Sammi will be able and want to live indepently or that she will really live with you into adulthood?

A.  Oh, wow...  Let's just say that I fully believe that Sammi will be able to live independently.  Let's also just say that I truly can't imagine not having her by my side and don't want her to go.  Maybe she can live next door...  :-)

Q.  I'd love to hear what you think about intellectual disability - how is it the same as what you thought upon diagnosis and how is it different?

A.  Hmmm...intellectual disability was kind of terrifying to me long before Sammi's birth and diagnosis.  I think we all shy away from things that we don't understand, and that's exactly where I was.  However, I also always innately knew that people with ID are still people, still have feelings, still need care, love and attention.  I managed a children's clothing store for 3 years, several years before I had Sammi.  I loved the job, and loved the children who came in as well as (most of) their parents.  One mom, in particular, always came in to buy for her 5 year old daughter who she said had a disability.  The love this mother felt for her daughter, who I had not yet met, was so obvious in how she spoke of her, in the care she took selecting her clothes, in the money spent (that store was not cheap...).  I loved helping her find things I thought would work well for the little girl's hard-to-fit body, and I think my heart just about burst on the day that she actually brought her into the store.  I wanted nothing more than to spend every second with her, playing with her, hugging her, making that connection.  And her mother noticed.  And it was obvious that she didn't get that kind of reaction to her daughter as often as she should.  I knew, then, how de-valued people with ID probably are in the world, and how much that needed to change.  I felt protective.  Now, after Samantha, I understand all of that and so, so much more.  I am certainly no longer afraid of intellectual disability, and try to advocate through my blog, Facebook, and my every day life to help change public perception and fear of the unknown.  

Q.  How many adults with Ds have you met and does meeting an adult with Ds scare you or comfort you?

A.  I have met countless adults with Ds.  In the area in which I live, there is a huge Down syndrome population.  Surprisingly, meeting the adults has always been comforting to me.  My first real encounter came about a year after Samantha's birth.  I attended the ARC picnic one summer, mostly because I needed to bite the bullet and get out there and catch a glimpse of Sammi's future.  Samantha and I went on our own and soon and struck up a conversation with a remarkable woman with Down syndrome who was about the same age as me.  I came away from that encounter feeling overwhelmed with emotion, as if I had suddenly decompressed after a year of worry and fear.  Actually, that description isn't far from the reality of the situation.  I suddenly knew that everything would be okay, that Samantha had a bright future, and that I was no longer so afraid.  My husband began working for Special Olympics soon after that, and the exposure and catharsis continued.  I saw people of all abilities, some verbal, some non-verbal, some with health issues, some with behavior issues.  But I was never scared of the future.  Everyone has their place in their families, in the community, in the world.

















 

She Knows She Has to be 18 First...

This morning Samantha read a book about responsibility.  And while it touched primarily on topics like telling the truth, doing chores around the house and protecting the environment, she learned another lesson at the polling center in her school gym when the man behind the table patiently explained the rights and responsibilities of voting.  I know she didn't really understand, but it's the first step, and one of many more to come over the next 11 years until she hits the magic age of 18.  Actually, she thinks 17 is a magic age right now because that's when she'll get to drive.  And then, one day in the not-too-distant-future, she'll learn about that other magic age of 21...

Just an Ordinary Day in the Life of an Ordinary Girl

October 31st, Halloween, was an ordinary day.  Not ordinary as in the usual sense of the word, as in a day when nothing much happened - to the contrary, it was a rather extraordinary day in that sense, in that it was comprised of both a field trip to Mt. Vernon and Trick-or-Treating. 

But for one girl, a girl with an extra chromosome, who looks a little different, learns a little slower, and doesn't always understand what her typical peers at her age are talking about, for the parents of that same little girl, who worry about how she might be accepted by those same typical peers, who worry about how her life as a 7-year-old child is so much different, perhaps isolated by the typical peer friendships that are growing around her, it was an ordinary day.

The morning started out with a 2nd grade field trip to Mount Vernon.  You may have read in my previous post how worried I was, perhaps less about behavior or safety while there than about the long bus ride, lack of seat belts, and a stranger (to us) driving her so far away from us. 

Thinking about her all morning while I sat at my desk at work, toiling over something that wouldn't be too taxing to my pre-occupied brain, I received an unexpected and wholly-welcomed text message from a friend, another parent of a 2nd grader, who sent me a photo of Samantha, on the field trip, smiling, linked arm-in-arm with two of her male friends.  It was so ordinary it was nearly startling.  It could absolutely have been any three children posing for the shot, so natural, so comfortable.  They were all obviously enjoying each other's company.  And all reports back after the field trip were that Samantha had a great day, and had a lot of fun.  When I got home I asked her what she saw, and she told me she saw hay stacks, and did a corn maze.  Sure sounds like fun to me!

That evening I got her ready for trick-or-treating, dressed as a Lalaloopsy doll.  If you have a little girl, you probably know what this is.  If you have a boy, I can safely say this has absolutely nothing to do with Power Rangers, Thor, Minions, or whatever else boys are into these days.  (Yeah, yeah, I know I'm about as totally clueless about boy stuff as you are about girl stuff...)  I then dressed myself in my (sleeveless) angel costume, resurrected from last Saturday night's party I attended in New Jersey, thrilled that the weather was so unseasonably balmy.  As the already murky, cloud-filled sky began to darken, we headed out, hoping to be back from our door-to-door mission for candy before the bulk of the other trick-or-treaters got to our own door, or before the rain started to fall. 

Along the way we met up with a former classmate, a young man who has always taken Sammi under his wing, who has been a loyal friend since they met in Kindergarten.  Actually, the very same boy who was posed in the photo texted to me that afternoon.  He asked if Samantha could trick-or-treat with him, and we excitedly agreed, happy to see her enjoy time with a peer outside of school.  We and the boy's mother stood back a bit, watching them run across lawns to each house, one after another.  She fell behind, he called to her to catch up and waited patiently as she did.  Her boot came untied, he quickly stooped to re-tie it.  She balked at a tall stone staircase, he asked for and received extra candy from the homeowner to give to her, waiting for him at the bottom.  He never treated her as anything less than a peer, a friend with whom he was obviously happy to spend time.

Funny that Sammi has no idea what that evening meant to us.  And I'm sure the boy doesn't either.  It was all just...so...ordinary. 

By the way, I learned something this year...if you trick-or-treat with your kids and carry around a plastic cup, chances are you'll get some beer or wine in it along the way.  Just sayin'...


(PS.  I didn't even mention the way her classmates flocked to her at a birthday party I took her too on Saturday!  Genuine happiness that she was there, and one girl even said she only came because she knew Samantha would be there.  They stuck with her, played with her, included her.  My faith in her future is strong.)

Even Lalaloopsies like peanut butter toast for dinner.

 

 

Freaking Out, Just a Little

I'm a little nervous today.  Like, little pools of anxiety are swirling around in the pit of my stomach, unsettled, pleading for mercy from the control-freak side of my nature. 

Samantha has gone on a field trip.

+

Steve and I have gone to work, no extra vacation time to spare.

=

Worry that she's on a looooong bus ride, with someone other than myself or Steve driving, through rush hour traffic, towards the City, then outwards to Mt. Vernon.

I mean, I love that she's going to Mt. Vernon - it's a very cool history lesson that may bring about some clarity for her concept-deficiency.  What I mean by that is that while my kid is smart, learns concrete lessons that can be made tangible, directly in front of her, concepts are very challenging. 

Think about it...as an example, you can say that George Washington, former resident of Mt. Vernon, was the first President of the United States.  But how do you explain what a president is?  What the United States is?  Former resident?  He may well have just moved out of that house last week.  She can memorize facts.  George Washington was the first President of the United States.  We live in the United States.  But it doesn't make any of that make any more sense.  I'm hoping that the trip to Mt. Vernon will at least provide some more tangible, concrete understanding of what life was like a long time ago, but the concept of time is difficult for her, too.  Show her a carriage house and tell her that horse and carriage were how people traveled a long time ago, and she will likely understand only that it's a means of transportation that could well have been employed just yesterday. 

Back to my worry, though, I don't love that she's going so far away without us. 

I'm not worried about her behavior - I suspect she'll be just fine.

I'm worried about the drive.  I know how Washington commuters are...  I know that school busses don't have seat belts...

I wish she had a cell phone so she could call me when she got there to let me know the trip was fine.

It's hard enough getting a sitter for your baby for the first time.  It's hard enough sending your kid off to school for the first time.  It's hard watching your child grow and become independent in so many ways, when just yesterday they were only a tiny, helpless baby, needing you for every aspect of their care - bittersweet.

Sometimes you just have to let go and trust...

I acknowledge that I'm a control freak.  Isn't admission of a problem the first step in the program?

The Aaaays to the Queues, Part I

 

 

 

Thank you all for indulging me with so many fabulous questions last week in response to my plea to populate a series of Q&A posts!  I was worried I'd be the laughing stock of the blogosphere if I hadn't received any, but I always had an out if I wanted to say I'd received all of my questions via private Facebook message.  Who'd be any the wiser, right?  But I didn't have to resort to such a clever yet brutally pathetic deception.

Because I often tend to get long-winded when talking about myself, I'll say that this is just Part I, to keep your eyes from glazing over, and that there will be at least one more Part in the series of A's to your Q's. 

Q)  What do you want teachers to know when your child is in their class? How can teachers help your child in inclusion? What is the most frustrating things about school? What do teachers not do that you wish they did?

 

A) Oh, these are excellent questions! I may have to skip the 4th question because her teachers read my blog, but to be honest, I can't think of anything at this point that they did not do that I wished they did. This is actually a pretty hard series of questions in general - we've been really fortunate that we've not yet seen the *other* side of education, the one where we need to fight for inclusion or one where the teachers weren't invested in my child's education. We've always had an aide in the class that helps Samantha stay focused and helps to modify some of the instructions. We don't want the GenEd teachers to have to modify what they do for a class of 21 to suit just one child - it's not fair to them. We want to make sure that the supports are in place within the classroom environment to help Samantha keep up, etc. 

 

We had an IEP meeting yesterday to add in some accomodations and modifications, things they already had in place, but that we wanted in writing just in case.  They included having Samantha stay in class for the introductory portion of the more conceptual lessons (Civics, History), then leave as part of a small group to have the lesson broken down into more basic, comprehendable pieces by the Resource Teacher.  I really don't give a rat's ass if Samantha learns what the longest river in Europe is, but I do want her to know how to look at a map or globe and to understand where we live in relation to other places.  She can memorize stuff, but I'd rather she understand more basic concepts that will help her in the future.  This is what they've been doing, and this is what's been working.  I don't mind these short, periodic pull-outs, as long as she's learning.  We were validated a few weeks ago when we were told by Sammi's GenEd teacher, the Resource Teacher, the Assistant Principal and two people from the county that had observed Sammi in the classroom setting, that she is definitely in the right placement, that she belongs in the GenEd second grade setting.  I know that can often be the biggest fear for parents - that someone will come and tell them that things just aren't working out, that they need to re-evaluate their child's placement in school.  I certainly feel for those parents.  We hold our own breaths often enough.

 

The most frustrating thing about school?  I just wish that we could observe Sammi in her classroom environment more.  Last year we dropped off and picked up Samantha from her classroom.  This year we have to say goodbye at the front door of the school in the morning, and wait for her to be brought out with her class in the afternoon.  I totally understand security measures that need to be in place, and the fact that there's far less chaos when the parents aren't buzzing around in the mix of things, but we really relied on that extra few moments of communication and connection with her teacher and her aide last year, and now we get so much less feedback on a daily basis.  Sure, we get a behavior chart with notes on it each day, but there's really nothing like 1:1 interactions.  It felt good to have the Parent Teacher meeting yesterday to quell the insecurities we often feel about the teacher we just don't know much, if anything, about, in a classroom we've only ever seen, perhaps, once.  Once again we were able to feel that comfort that had been missing, much like the daily visits we'd lost.

Q.  What is your favorite brand of leggings? Brand of clothes that fits her best? Love your taste in clothes and the fit has been a struggle lately...

A.  Definitely Naartjie!  Their pants and leggings all have stretchy waistbands, and they go up to a size 12.  They pay great attention to detail, and leggings are so much more interesting that regular leggings you'd find anywhere else.  I also find great striped leggings at Old Navy, usually on sale.  For clothes that fit her best, in general, also Naartjie.  They do styles that are less clingy and more flattering than other brands,   Check out their website - they're almost always having a big sale, and every Tuesday they select 3 or 4 items out of their newest collection to run at 40% off for the day.

Q.  Did Sammi's diagnosis factor into your choice to only have one child?

A.  Nope.  We had always talked about having only one child from the get-go.  Plus, I was 37, and knew that even if we did want another child, I couldn't even fathom having another any time in the next several years, at which time I would be too old.

Q.  What programs/apps/etc. did you use to help Sammi to start to read? And keep reading?

A.  Before Sammi was even 2, we were using alphabet and number flash cards with Sesame Street characters on them and baby sign language cards with photos on one side and the words on the other.  She was totally obsessed with those cards, and we never left home without them.  At 24 months she knew her alphabet, and she shocked me before she was 3 by looking at the back sides of the baby sign cards, where only the word resided, and telling me what each card was.  To this day I'm still not sure whether it was just pure memorization of the color of the card, or if she was actually able to read them through long-term memory recognition/recall.  At 4, we were invited to join a test pilot of Terry Brown's online version of her highly successful So Happy To Learn program, in which she has taught people with Down syndrome to read, at her home, for many years.  It could not have gone better, and Samantha, empowered, took off from there. 

Q.  Couples who have a child with special needs have a statistically higher incident of divorce. How has Ds changed/improved your marriage? Has it had a negative effect in your marriage at any point and, if so, how did you get through it?

A.  The key word here is special needs.  The statistics of divorce among parents of children with Down syndrome are actually lower than in the general standard statistics of divorce.  I suspect this may have something to do with how manageable Down syndrome is, how much information and support there is out there that helps parents to work together to successfully raise their children with Down syndrome.  We have been so happy to have been able to agree on everything when it comes to raising her, educating her, providing for her and advocating for her.  Our marriage has definitely been stronger as a result, and Down syndrome, or the fact that Samantha has Down syndrome, has never played a negative role.

More soon!  Feedback and commentary are always appreciated.  :-)