Monday, April 29, 2013

Pulling it All Together

After dreading this inevitable day, after knowing it occurs with some regularity to all of us at one time or another, it has finally happened to me.  ME! 

I have hit the serious, yet completely easy-to-remedy wall of blog inactivity

There have been articles, too numerous to count, that have dissected the whole phenomenon of bloggers starting off long-awaited posts with the sentence, "I know I've been absent for a while..." and I vowed to not be one of them.  And, through the narrow escape on a minor technicality, I really am not, nor do I plan on it.  But it has still happened anyway, kinda. 

I could make excuses until the cows come home, but there are a few very real, valid reasons why.  First and foremost, I've been busy.  Yeah, I know, not really a very good excuse or a reason.  An unfortunate turn of events early in the month just kind of turned me off to doing much of anything.  Work became insanely busy, and I bit off far too many personal projects for me to chew (piano concert, DSANV calendar, Sammi's birthday party, school events and assignments, etc.) at once with deadlines way too close together (hoping I can see through to the end of May, then things should sail smoothly again). 

Then I got in with a few heavily-weighted topics and couldn't figure out in which direction I wanted my blog to go.  All-advocacy-all-the-time, or the continuation of a little bit of both, as I have always done in recent years?  Was there too much pressure coming from too many sides for the former, and if so, would I look bad if I didn't take the bait? 


Was I feeling lost in the question of advocacy vs. activism?  My discomfort became an inner turmoil, putting the virtual brakes on my ability to see a clear path anymore.

Did I feel any motivation to carry on as before? 

Was my blog just becoming one big brag on my girl and was I risking turning people off?  It feels kind of weird when I post something from our day-to-day, something important to me that I feel should be voiced, and the comments are all praising me or Sammi.  I feel a little uncomfortable, in that I wasn't seeking praise, but in re-reading, it sort of sounds like I was.  Don't get me wrong - those comments are wonderful!  I truly love and treasure them.  But I just hope people don't misunderstand my intentions from the story I've told or the picture I've painted. 

Should I just lay low for a while, see what inspiration comes to me?

Too much.

I took a little break, for the most part.  This will likely be my only post this week.

And here I am.  Still hoping to see the other side of May with a clear plate and some new thoughts.

I'm optimistic.

And did I mention that piano concert?

Spent the last two Saturdays driving to New Jersey for some practice.  It's a 2-piano concert, being played on Steinway grands in a Philadelphia Steinway store's concert space.  Nice thing about 2-pianos is that mistakes are far less obvious.  (*wink*)  Nice thing about the passage of the last 27 years between my last recital and this one is my lack of fear, lack of self-consciousness, and boundless enthusiasm for the challenge of pulling it all together and re-kindling my love of piano. 

One day, my blog will take a similar turn.  Not like I want a 27-year break, but I would love to see that lack of fear, lack of self-consciousness and boundless enthusiasm grow as grow and mature.  To be able to create something that flows from my brain into my fingers effortlessly, and with some modicum of success.


Thursday, April 25, 2013

Video Accompanyment for Yesterday's Post

I want to share this with everyone!  Please see the video below for the segment of the School Board meeting on Tuesday night in which Sammi's teacher, Lisa Roth, was honored.  The video I referenced yesterday is shown during this segment (keep an eye out for me and Sammi!), and Lisa's speech is moving and inspirational for parents and educators everywhere.  Congratulations, Lisa!!

Get Microsoft Silverlight

Wednesday, April 24, 2013

1st Grade is Magic

Truer words could not have ever been spoken, and these words came from the most dedicated source at the most appropriate time.  Samantha's 1st grade teacher, Lisa Roth, winner of the 2013 Washington Post Agnes P. Meyer Outstanding Teacher of the Year award for our county, spoke these very words on Back to School Night in August, to a group of anxious parents of rising 1st graders.  She spoke these words with a resounding confidence and surety that calmed the room like a warm blanket on a cold night.  She spoke these words as a person who has spoken them many times before, who is confident in their power and in their effect, who knows them to be true.

And she does speak the truth. 

1st Grade is Magic.

Now, nearing the end of the school year, getting ready to face the next leap, the next great challenge, I see the astounding growth and development Samantha has experienced in the last 8 months, and the anxiety and concern I would ordinarily have felt in the thought of my baby entering 2nd grade is nowhere to be found.  Gone.  We're ready.  We have a strong team of teachers and classmates around us, communicating with us, nurturing my girl and helping her to reach her full potential.  Sure, they won't all still be here next year, and things will shift and change, but the foundation has been set, the pieces in place for those who will follow.

Our re-evaluation  is complete, Samantha's inevitable transition from the DD label to Child with a Disability in place.  The IEP meeting yesterday gone without a hitch, the only thing keeping the time from being kept under an hour was the small talk and laughter, the joking around that is usually found among friends.  And we were among friends.

After the meeting disbanded, we all rushed home to get ready for the evening's next event, the county School Board meeting at which Lisa Roth was formally honored in front of a packed room of hundreds, including parents, students, teachers and administrators.  Her speech was so moving, as evidenced by the wiping of eyes from audience members and Board members alike, preceded beautifully by a video, in which she and others (parents, including myself, former students, the school principal and two school custodians) spoke over images of her class performing their day-to-day activities.  The two custodians, whose words were translated into English, were particularly poignant, and brought tears to my eyes.  They spoke of how Lisa values them, includes them, makes them feel not like custodians, but as members of staff.  This made me feel happy, but also sad, that exclusion and isolation occur everywhere, not just in the special needs community.  These two women are members of staff, and should be valued, and it is completely a testament to Lisa's warm, nurturing personality that they wanted to speak on her behalf in such a memorable manner.

I've said it before, and will say it again, we have been so fortunate to have had our daughter in her class this year.  I can think of no better experience to start off Sammi's full-time educational life, no better foundation for her to succeed, no better source of communication and positivity for us, as parents, to cling on to and move forward with.

And, while I have no such illusions for Middle School, when that particular challenge comes around, here's to hoping that 2nd grade can be magic, too...  

Tuesday, April 16, 2013

Batter Up! and other tales of growth and maturity

A little self-indulgence today, stuff I need to get out before I burst.  :-)

It continually amazes me how things can change in the course of a year.  12 months.  52 weeks.  365 days.  Doesn't sound like much when you put it that way.  And really, it's not.  Even though that's not what I tell myself to keep from getting depressed at how much older I'm getting and how quickly...

But every time I get frustrated at something Samantha is or is not doing, I always have to think to myself, but what will it be like next year?  I look forward to her developmental growth spurts, even though they're often accompanied by a little bit of bad or annoying behavior - bucketsfull of stubborn, coupled with the insistent and painfully persistent, oh-so-sweet but oh-so-not-helpful, "Let me help!!"  I'm not complaining, really!  It's endearing, and I have to remember to recognize it for what it is, to harness it and use it to our advantage, to spur the next stage of growth and maturity.

There are so many examples, but I'll highlight just a few.

Last year she started playing t-ball in the Challenger league.  All signs beforehand led us to believe she was completely excited to try this new endeavour.  But what we got was complete shut-down when it came to actually being expected to do something.  This was what we got:


Fast forward a year, and the game has changed.  No parental assistance needed (just a little bit of guidance from the coach at the plate), and we've discovered that my little one packs a pretty powerful punch, smacking the ball down the first base line again and again.  She runs the bases like a pro (sort of), making darn sure she stomps on the plate for good measure at each stop. 

She's learning to play rhythms on the piano, playing songs with enthusiastic confidence using the special book she has to accompany the note stickers on the keys.  I even taught her Chopsticks.  She took to heart her homework assignment from music class the other day, insisting that she needs to practice.  I think I see lessons in her future... 

Ummmm...anyone else see a few too many letters in her name?

For several agonizing, frustrating years, she'd refused to look at the camera when I tried to take pictures of her.  Capturing her completely unawares was the only way to sneak a shot.  (I'm sure you all know how sad that made me feel.)  And now?  She's become the most amazing, patient, lovely little model I could have asked for.  All I have to do is tell her I need to take her picture for my friends, and she's ready to go!  The photo below is one I've set up for my other blog (on a short haitus right now as I sort through all of my current responsibilities).  Vogue, here we come!

Why didn't I notice this jacket was missing a button until now??
As we approach her 7th birthday, I've been enjoying reflecting with Steve on the amazing leaps and bounds she's made this year, the developmental jumps, the progress.  It's so fun to watch, much like the growth chart being tracked in pencil on the living room doorway.  What?  Another inch in the last 3 months? 
Oh, my baby's growing up, and up, and up...
Whatever will next year bring?

Monday, April 15, 2013

Glee, Guns and Good Judgement


I really should have seen it coming. 

There was a trail of breadcrumbs a mile long, spanning back over the last 3 years, red flags of warning raised repeatedly, the taste in my mouth becoming increasingly bitter as I stumbled along, my enthusiasm waning as rapidly as the flags' frantic waving in the wind...

It all started out innocently enough.  I began watching Glee a season late, catching up on what was missed during summer re-runs.  I stood and applauded the inclusion of characters living with very real issues, subject matter as timely as any morning paper, a tongue-firmly-in-cheek attitude that made it relevant and relatable to everyone, everywhere, breeding tolerance where previously lived only derision and exclusion.  Homosexual...wheelchair-bound...multi-racial...homeless...obsessive-compulsive...teenage and pregnant...bullemic...overweight...dyslexic...developmentally-delayed...autistic...and the list goes on.  Good stuff!  It seriously covered everything you could imagine, including everyone in their broad and continuing (yet sublimely subtle) statement on the ills of social exclusion.   

I jumped up and down, waving my arms and shouting my support in particular over the show's inclusion of a character with Down syndrome.  A teenaged girl named Becky, who could very easily be my child in a few years.  Becky, on the surface, is a character for whom the producers and director should be appaluded.  A member of the cheerleading team, she made an occasional appearance while working closely with the coach to hatch her devious plots against a rival school group.  But as I continued to watch the show and began to watch Becky more closely, more critically, I felt the rise of discouragement, disappointment in her one-dimensionality, a stereotype not quite quashed in a way that made me terribly comfortable with the direction in which she was heading, the direction in which the changing of minds of the masses towards people with intellectual disabilities, the direction of true inclusion, was heading. 

It seemed to be heading nowhere

Not like I think the director owes the Down syndrome community anything, but with the overall message of being included and accepted being carried by all of the other characters, why couldn't it be carried just as simply, as beautifully, as gracefully, by Becky?  Could it be anything to do with the fact that the others are acting out their issues or disabilities, where Becky, played beautifully by actress Lauren Potter, actually owns her disability? 

Becky is scripted as comic relief, as a girl who is never seen in class, who is never seen on the actual cheerleading squad, who is never seen as a real, contributing member of the school's social structure, just as her coach's pet, almost shielded from the woes of actual school social life.  Occasionally we get a glimpse into her feelings, as voiced-over by the amazing Dame Helen Mirren (most poignantly in a tear-inducing line stating, "It *sucks* to be me"), but without any kind of consistent anchor for Becky to hold on to outside of her coach's office, comic relief is still comic relief.  The girl with Down syndrome is still a satellite of her own, floating through the ether, peripherally involved in the plot lines, with uncomfortably silly, underwhelming lines of dialogue and cute-guy-bottom-smacking and hand-on-the-butt-of-her-prom-date-dancing. 

And, as almost an apology-gone-wrong, the story took a new turn last week. 

**Hey, I know!  Let's make Becky have some real issues!  Let's have her bring a gun to school, just like any other troubled teenaged kid would do!  (Incidentally, she was troubled on the show because she was worried about not knowing what would happen to her after graduation, saying that she couldn't go to college - whaaaaa?  Lauren Potter herself is in college!  Who writes this stuff??)  Let's really show how well-rounded her personality is, let's show the world that people with Down syndrome aren't always happy!  Let's feel sorry for her!**


Hold it right there, folks...


Let's just feed into the thought that perhaps people with intellectual disabilities are mentally unstable while we're at it, okay? 


Let's all just feel sorry for her.  Like we should do.  Poor girl with Down syndrome, included in school because she has to be, "friends" who humor her, a coach who uses her.  You know, it's funny, I'm not sure if I'm more annoyed that they had her bring the gun to school, or if I'm more annoyed that she spoke of not being able to go to college.  There are other issues with this episode, with this new turn of events, but as I'd stated above, my issues go back further than this, and this was just the fire lit under my butt to bring it up.  Do I keep watching?  Yeah, I still like the show overall, and I still want to be able to keep an eye on what's going on with their portrayal of Becky.  Makes for good blog fodder if nothing else.  And, just by way of a disclaimer, I am not being hypocritical here - I am not about to bite the hand that feeds inclusion and empowerment and the growing anti-bullying movement, but I'd just love to see it done a little differently.

There's an excellent article here about the episode, about its impact on the people of Newtown, CT, still reeling from the unspeakable acts of horror that rained down on them, gun violence in school still too fresh in their minds, and its impact on the the special needs community. 

Thanks a lot, Glee, for making some things harder than ever for our kids. How're you gonna fix this? 

Thursday, April 11, 2013


I'm copying Meriah's post today, wanting to help get this information across.  She's said it perfectly. It's a lot of info, but please, please take a look at her links, share this information, and send letters and tweets to the people who can help get the word out!


It’s About Human Rights: #justiceforethan

A young man was killed almost 3 months ago. His death was ruled a homicide. The perpetrators got off with a hand tap because the man had Down syndrome.
This is what we know.

A man was killed.

His death was ruled a homicide.

The perpetrators got off with a hand tap because the man had Down syndrome.

Now replace “Down syndrome” with any other word.
  • The perpetrators got off with a hand tap because the man was black.
  • The perpetrators got off with a hand tap because the man was Asian.
  • The perpetrators got off with a hand tap because the man was obese.
  • The perpetrators got off with a hand tap because the man had a bone marrow disease.
  • The perpetrators got off with a hand tap because the man was Deaf.
  • The perpetrators got off with a hand tap because the man used a prosthesis.
  • The perpetrators got off with a hand tap because the man had testicular cancer.
  • The perpetrators got off with a hand tap because the man had blonde hair.
is this becoming clear?
The man was killed. Robert Ethan Saylor was killed.


His death was ruled a homicide.


And rather than looking at the actions of the men who killed him, rather than taking a good hard look at what they did to force death upon Robert Ethan Saylor, they are holding up DOWN SYNDROME, this man’s extra chromosome, and saying that IT, and not THEY, are the culprit.

This is about human rights, people.

Ethan Saylor had the right to live.
We need to care about this. Ethan was one of our own; he was a member of the community with disability, he was a loved human being who deserved so, so much more.
Show that you care.

Show that you want justice for him.

Call for an independent investigation. Tell the Department of Justice that YOU ARE THE COMMUNITY and you WILL BE HEARD; demand justice.
Friday, April 12th marks 3 months since he was killed.
We will be striving to reach journalists, celebrities, media personalities and more through twitter – people who have loud, huge voices that can help us call out across the masses. We will be asking for justice for ethan: #justiceforethan.
He will, so long as we all unite and demand that it happen.

What to do:

SIGN and share the petition that was started by Ethan’s mother. HERE IT IS. There are a lot of petitions out there, please be sure this is the one that you have signed and shared

JOIN the #justiceforethan twitter campaign. Our plan is to get the attention of those who have louder voices that can reach across the masses and get action. We are going to have tweeting parties (tune in for details), but you do not have to wait for the party: get started tweeting and don’t stop! (see “Twitter Handles” and “Timely Tweets” below)
Twitter 101: for those of you that are new to twitter: your handy directory on terms and how-to utilize twitter
Twitter Handles: the direct handles on people that are likely to be sympathetic to this campaign, allies/champions
Timely Tweets: Have a hard time coming up with something to say? A collection of useful twitter-ready tweets has been crafted for your use by Melissa Stoltz!
  • “Join us in our push for #justiceforethan”
  • “Love someone with Down syndrome? Join us in our push for #justiceforethan”
  • “Disability rights are human rights. #justiceforethan”
  • “Death ruled homicide, cops walk free. We need #justiceforethan”
  • “Down syndrome isn’t a cause of death. #justiceforethan”
  • “No one should die over a movie ticket. #justiceforethan”
Shortlink for neutral post by Melissa Stoltz on what happened: – use this link for tweets, especially to media
The button: Share the button, put it on your blog/site, update your facebook status photo – get the word OUT!



Call the Department of Justice – (202) 307-5138
Tell them that you would like an independent investigation on the Robert “Ethan” Saylor case petition calling for an independent investigation:

4/10 UPDATE: #justiceforethan

Twitter Rally: THURSDAY, April 11th, 9pm EST, 8pm CST, 7pm MST, 6pm PST. Have your Twitter Handle sheet ready along with your TweetSheet (if you need it). When the clock hits your respective timezone, log into Twitter. Start tweeting.
This is the thing: it doesn’t matter how many followers you have. It doesn’t matter at all. What matters is the sheer volume of tweets we can send to the people listed, and the number of times we can raise the hashtag #justiceforethan. If you have a lot of followers, that’s cool – the people who follow you may choose to join – but it’s not necessary, so don’t worry if it’s just you and your best friend. That’s fine.
Vigil: On the evening marking nearly 3 months since Ethan lost his life, join us in remembering his life and in marking in our hearts the injustice done to Ethan. Take a moment to light a candle, eat some pizza and listen to Bob Marley (something Ethan loved doing). Thursday, April 11th.

Wednesday, April 10, 2013

Loudoun County's Teacher of the Year 2013 - An Award WELL DESERVED!

So I've learned that posting "Exciting news, but I can't tell anyone yet" on Facebook, even when it's followed by the statement, "(this is *not* about me)," can incite a near-riot of pregnancy rumors.  Uh, folks, I'm nearly 45, and I am not pregnant.  One child is enough, thank you. 

However, I did have exciting news that I wasn't able to share until Monday.  One week ago, our county's in-house video production team came over to interview me about Samantha's amazing teacher, Lisa Roth. 

The teacher that my friend (a parent of another child in Sammi's class) and I nominated in the fall for the Washington Post's Agnes P. Meyer Outstanding Teacher of the Year award, an honor bestowed on only one teacher in each of the Washington metropolitan area's counties each year. 

The teacher who won. 

The nomination packet was a 54-page behemoth, consisting of testimonials, photos, and exhaustive nomination criteria compiled and written by Amy, the other mom.  We were restricted to a maximum of 12 testimonials, which was a shame, because we had parents, former students, teachers and administrators lining up to have their say in support of Lisa. 
Out of 30 nominees in the county, she was easily selected. 
I can think of no more deserving person for this award.  She's kind, gentle, selfless, and incredibly passionate about her job.  Correction...I wouldn't call it her job.  It's more of a calling.  And it shows in everything she does.  From making it her mission to learn more about how children with Down syndrome learn so she can better teach to Samantha's strengths, to calling Amy's daughter the night before her tonsillectomy to let her know things would be fine and that she was thinking about her, the environment Lisa creates both within her classroom and everywhere she goes, makes me feel so very, very lucky that we had this valuable opportunity to have Samantha in her class and to know her ourselves.  Samantha's growth and development have blossomed under her instruction.
The profile of Lisa on the Washington Post website can be found here.
Thank you, Mrs. Roth, for all that you do!

Friday, April 5, 2013


I've started to look ahead. 

Way ahead. 

Into the lives of other people, and how they fit into my own grand scheme for Samantha's future. 

Like a matchmaker of olden times (or lands far away), I've been scoping possible suitors.  It started when she was a baby. Getting to know the parents of little boys with Down syndrome - are they a suitable family? Will she be happy? Supported? She has no siblings, so this is of particular importance to me.  Weird, I know, as she's only 6, but I can only assume that this is a natural inclination for parents of children with intellectual disabilities?  Maybe?  (C'mon guys, don't leave me hanging.  I'm sure I can't be the only one...)    As she gets older, I am so much more comfortable with the idea that she'll be able to make those love matches for herself, with Mom and Dad keeping a close and watchful eye from a slight distance.

But my selfishness goes further than that.  It's not just the match of possible future love and marriage that I get caught up in, but the matches of friendship.  Of protection.  Of school support.  I keep a close eye on the little girls and boys in her grade who are good to her, who accept her as she is, who play with her unconditionally.  I keep an even closer eye on the older kids, the ones a grade or two ahead of her who have already learned something about acceptance and find her adorable and make her the object of their attentions.  Her reading buddy, C., in the 4th grade.  Our neighbor, R., in the 3rd grade.  Others. 

I start to do the silent, mental math, using my fingers to count out the years...will they still be in the same middle school when Samantha gets there?  Will they still be in the same high school?  Will they be the ones to stave off bullies, to take my baby under their protective wings and provide acceptance?  Will they set the example?

When I hear that one of them is moving away, my heart sinks. 

One down...

Now who else is there...?  I begin to watch carefully again, trying to identify the next Great Hope.

Yesterday, S., a little girl in the 2nd grade, the sweetest, kindest, most thoughtful child ever, sister to one of Samantha's classmates, gave Samantha a gift - a book, carefully stapled together along the side, written and painstakingly illustrated by her own hand, about Sammi the princess, who had to pick a new pet.  The inside page stated that it was dedicated to Samantha.  And, on the last page she wrote that we should stay tuned for Part 2.  It made me cry.  It was beautiful.  It will be treasured

And my mind spins...2nd grade.  Good.  She'll be there for my girl.

Selfish, I know. 


Wednesday, April 3, 2013

Learning to Fly

It all started with the baby swings.  You know, the bucket seat that engulfs a baby's bum in gross, unwashed plastic, sat on by a million wet diapers...  I never trusted Samantha to hold on to anything, wasn't aware of just how strong she might be, and milked that dirty but safe apparatus for as long as it was possible.  On the day I had to remove her double-knotted shoes with one hand while holding her in position with the other, out of breath and puffing, terrified that I might drop her, I knew that. was. it. 

Once she outgrew the baby swing, it took everything I had to explain to her that she was too big, that she just didn't fit anymore, that she was a big girl and needed to use the big girl swing, even when tempted to relent at the flood of tears and begging she produced, even when she told me, emphatically, that she wasn't a big girl, she was a baby.  Finally, I convinced her it was a thing of the past. 

But, in those early days, when she would decide she was done swinging on the big girl swing, she would remove her hands from the chains, put them up in the air, and announce, "All done!"  Oh, how my heart would stop as I grabbed her falling body, vowing never to let her on any swings ever again.

Then one day, she got it.  She learned to tell me when she was done before taking her hands off.  She learned that taking her hands off while on the swing was dangerous.  And I got to enjoy the grand pleasure of pushing her, higher and higher at her insistence, over. and. over. again.  When, selfishly, all I would have loved  would be to sit on the bench nearby with the other moms and just watch

I've tried, repeatedly, to teach her to pump her legs, to pull back to gain momentum and do it herself.  She moved her legs appropriately, but without the upper body movement, nothing would happen.

Until Saturday.

There we were, at a playground on a beautiful, no-coats-required, breezy, sunshiney day.  Children, the first of which Samantha had seen since her Spring Break had begun a whole week before (and one of whom I'm sure I have to thank for the latest bout of pink-eye she woke with yesterday), were running around, sliding, swinging, climbing, enjoying the weather.  As I watched and pushed her on the swings, two other sets of parents were trying to teach their children, who looked to be about Samantha's age, how to do it on their own. 

Inwardly, I cringed, thinking that this typical rite of passage would not be ours for some time yet.  I smiled politely, and silently, inwardly, begged Samantha to pay attention.  Out loud, I cheerfully asked her to watch the other children, see what they were doing, telling her how excited I would be when she learns to do it herself.

And then I had an idea.  I tried a new approach to teaching her to do it.  It may have smacked of desperation, and I'm sure the others could hear it in my voice as I motioned like a madwoman, commanding her (in a nice way, mind you...) to do as I instructed. 

And you know what?

She did it!!


And I was floored

No speed or height yet, but she was definitely self-propelling.  And she was definitely proud of her accomplishment, telling me she could do it on her own when I went to push her again.

And I can't wait to try again this weekend.

I have no doubt Samantha will soar to great heights on the swings soon, just as she does in anything else she sets her mind to.

She can fly.

Tuesday, April 2, 2013


Gonna keep this simple.  No names spoken, no finger-pointing, nothing complicated.  This is a topic I've thought about with more and more frequency over the last couple of years, a topic that is now nearing the front line, most recently in the wake of the death of Robert Ethan Saylor.  I'm no expert here, and I certainly don't profess to have all the facts, but I'm gonna throw it out to you to mull over.

We need to work *together.*

All across the country, across the globe, even, there are Down syndrome organizations, big and small, who each have a plan to work hard to fight for *awareness*, for *services*, for *opportunities*, for *research*, for *action in the government houses*. 

But that's the problem. 

They each have their own plan.  They each have their own fundraising sources and schemes, each their own budgets outlining what to do with the money raised, keeping in line with their own goals.  They each have their own ideas of how *awareness*, *services*, *opportunities*, *research* and *action* can be achieved.  And they each go about it in their own way, oblivious to the efforts by other organizations that may be working in tandem or, frighteningly, against their own. 

There's a disconnect, a fracture, and it's counterproductive to the cause(s).

Think about it.  Doesn't the voice of many speak louder than the voice of one?  And the voice of many, in solidarity, speaks louder than the voices of many, in all their individual bits and pieces.

Trying to think of an example here...  Okay.  You're a city planner, wanting to build a road through parkland.  People aren't thrilled about it, and let you know, each in their own way, one by one.  An e-mail here, a letter there, some in-person as you pass each other on the street, each with his or her own solution.  One says to build an overpass.  Another to dig a tunnel.  Yet another to put it off for another year.  Then you get a petition signed by 10,000 of the town's most influential people begging for the road to be built on-schedule, a petition that outlines the massive benefits to the economy, the employment numbers, ecology (yeah, not sure how that would work, but this is just a lame example).  I'll be damned if I'm going to listen to the rabble that's been trying to bend my ear in dribs and drabs, and go with the stronger voice, the more compelling one.  And stuff gets done.  The road gets built, transparency allows for everyone, supporters and naysayers alike, to see exactly what the costs and benefits are, the job market soars, and, most likely, most people are happy.

Like I said, lame example, and I think I may have actually done it wrong here, possibly making the wrong point altogether, but I think I kind of got the idea across in some way. 

We need to work together to achieve our goals.     

As it currently stands, we have organizations that lobby, organizations that fund research, organizations that raise awareness, etc.  And as it currently stands, the vast majority of donated money goes to the most popular organization(s), regardless of what it is that they actually do (and I'm not saying they don't do anything).  But the others are forgotten, smaller voices struggling to be heard, voices that could all be joined together with the larger ones to ensure that funding is divvied up in the most productive way, to make things happen that need to happen for people with Down syndrome and the world's population in *general.*  (more Alzheimer's research, anyone?)

I brought up the death of Robert Saylor in the first paragraph because I think more and more people may be seeing the problem these days.  Some highly-influential organizations didn't respond at all, or responded late with a lukewarm call for action (their reticence no doubt politically-motivated by controversial donation sources in this case), some responded with more decisive courses of action, calling for justice and solutions to prevent future issues like this.  Politically-motivated?  Yep.  Not politics in the US government sense of the word, but politics in the more self-serving, knowing-which-side-their-bread-is-buttered-on sense of the word.  Silly that that should happen, when what we want is supposed to be for the good of others (our loved ones with Down syndrome).

I'm not saying anyone's wrong.  I'm just saying that we should be able to pool our resources and efforts to achieve the common goal, instead of wasting the precious green lifeblood that runs through our wallets on the failed attempts by those small voices with big, important dreams that get squashed before they even have a chance of coming to fruition.

I'm not one of those people who can brainstorm a solution.  Not even close.  But in getting this out there, I know that some of you super-smart people will start thinking about this, too.  Will reach out to your own connections.  Will keep this in mind when achieving positions of influence within your own organizations.

There's got to be a solution to unite everyone, to get us all on the same page, to get us working together, rather than in this fractured state of counterproductivity.

And, in the immortalized words of Rodney King, "Can't we all just get along?"

This won't be the last I write about this.