Tuesday, September 23, 2014


Milestones are pretty amazing things.  They're like this pre-programmed set of expectations that come with the baby/child handbooks, or, more accurately, with the baby/child itself; a pre-determined minefield of emotional highs and lows for parents.  We know what the milestones are supposed to be, when they're supposed to happen, and in what order.  We hold our collective breaths, and we (insert deep inhale here)...wait...and wait...and wait...  And when they don't happen, we question ourselves, our methodology, our children.  We feel frustration (insert carefully-modulated, controlled exhale here). 

For the parents of children with special needs, there's a love/hate relationship with milestones.  On the one hand, we have to learn how to throw some of them out the window completely, or to push the timelines back to a seemingly impossible place and time.  We learn acceptance in a huge way, while trying to avoid complacence.  On the other hand, we know how to celebrate when milestones are hit, and celebrate BIG!  We curb our expectations, but nothing is ever taken for granted - the simplest of milestones met is usually a monumental accomplishment for our children.

I truly thought this particular milestone would never happen.  Let's just say I think the Kudos t-shirt Samantha's wearing in the last photo is highly-appropriate and well-deserved.  I just wish the photos could show how quickly she does this!

The next great milestone, I think, will be losing the training wheels on her bike.  I won't hold my breath for that one.  Come to think of it, I may have said that at some point about walking, running, dressing herself, using the toilet, reading, writing, tying her shoes...

All in good time...

Monday, September 22, 2014


So, there's this time that comes up every year...  It falls just about...now, after the rigors of a full summer and the trauma of back-to-school.  It's a time when the weekends are now mostly empty, devoid of the overscheduled, over-traveled, over stimulated activities listed one on top of the other on my Google calendar at work.  It's a time when taking a deep breath (ahhhhhhhhh...) is the most amazing feeling in the world, a decompression following all the excitement, the rush, the panic.  And, mainly, it's the time that I've finished the DSANV calendar for the next year, just squeaking in under the deadline, edging closer and closer every year, for production in time for the upcoming Buddy Walk. 

I know that sounds awful.  Like it's a chore

It's a beautiful project, really, and it's not a chore, exactly, but after 7 years I no longer feel that passion, that excitement, that exhilaration of guiding the process to completion that I used to feel.  Everything waits until the last minute, when there's no more time left to spare, and all of my personal projects (ohhhh, such as...blogging, perhaps?) get put on the back burner, sitting idly by, lest guilt overwhelm me if I dare work on one of those without having done the calendar first.  So nothing gets done.  And I fall further and further behind. 

On everything.

But the files are finally with the printer, and I am no longer consumed with guilt for sitting down at my computer for a purpose other than that.  My computer is not the enemy, nor is the beautiful calendar.  My projects are no longer frivolous distractions. 

And I have now passed the calendar project on to another person, going forward.  Some fresh perspective is needed, a new vision.  And I'm excited to see what that will bring.  And I am so grateful to have had the opportunity to have done this for so long, to have been able to take it and run.

But feeling stale towards something is not a good thing, and definitely not fair to such a labor of love.  And I have loved it, and I do love it, and I want it to continue. 

And I'm excited to attempt to blog again, to break out my camera, which has been steadily gathering dust, to create this year's batch of Christmas-gift photo books (another long project!), to find my own creativity in any number of ways once again. 

By the time I post this, I will have the print proof in my hands to review - I am excited about that!  Once I can see it all put together, I am happy and relieved.  And for now, I will do normal weekend things.  I will play with my child.  I will soak in this beautiful sunshine instead of wishing for a rainy day to stay indoors and work on layout.  And I will think of some other way to volunteer my time with the local Down syndrome organization, preferably something that doesn't reach critical mass every summer.  :-)

Happy first day of Fall to everyone!

Friday, September 5, 2014

Letter to Teacher

I was given homework this week from Samantha's teacher.  Really, ME, homework!!  While a mild inconvenience, given how busy I have been lately, it was actually right up my alley - the opportunity to write about my child.  The instructions were simple:

"The FIRST homework assignment is for you!  I am asking that each of you write a letter.  In this letter, I would like to view your child through your eyes!  Please tell me any and everything you would like me to know about them!"

Like I said, right up my alley

My first thought was to plagiarize one of my own blog posts, but the idea of trudging through years of stuff to find the right one was daunting.  And probably already well out-of-date.  So I bit the bullet and wrote it on my own:

Dear Mrs. xxxxx,
Where do I start?  I think over the past 8 years I'd be able to encapsulate the details of who my child is in a few paragraphs, but really, there's just so much to tell.
I'll start with the obvious - Samantha has Down syndrome.  This, however, does not define her any more than the fact that she has blonde hair and blue eyes does, it does not actually tell you very much about her at all!  She knows she has Down syndrome, although she does not really know what that means.  I've worked on introducing the concept to her over the past few years, will point out other people who have Down syndrome to her, and I've told her that it makes some things hard for her to do or to learn.  Her response has always been a bit off-hand, not really reacting at all to the information.  She tends to internalize things, hide how she really may be feeling in favor of telling you everything's okay.  
This internalization of feelings carries over into some slightly  more serious situations - she refuses to talk about her own boo boos, or any kind of injuries or illnesses.  While she's absolutely obsessed with playing doctor, with fixing other people, she hides what's going on with her.  This makes it extremely challenging to really know if there's an issue, and ensures that we are always keeping a watchful eye.
While extremely outgoing and gregarious, Samantha is a cautious child.  Without playing armchair shrink to our shortcomings as parents, this may be a result of our attempts to shield our vulnerable only child from any harm whatsoever, including the traditional rite of passage for any child - the skinned knee.  I recently wrote about her cautious nature in this blog post.   Actually, my blog is a great place to find more information about Samantha - I've been writing about her since she was 1, talking about her challenges and celebrating her victories.
While I was pregnant, I frequently dreamed about the willful child I was carrying - that's the word that was always in my head to describe the baby I knew nothing about until she was born.  I didn't know then how completely right I was!  Willful is actually a nice way to put it.  It can be much more accurately described as STUBBORN.  She's incredibly stubborn, and good luck to anyone who attempts to get her to do something she doesn't want to do without bribery or physically making her do it.  Once she digs her heels in, she's virtually immovable.  Redirection works, if it's presented in a clever way.  Sorry, I'm not able to define my use of "clever" here.  I guess you'll just have to find out...  :-)
She also has a sharp wit and an incredible sense of humor!  And she'll test you and play you and see what you're made of.  Hearing "but Daddy said I could," sly smile and all, when I've already told her no and when Daddy most certainly did not say she could, happens from time to time, one of those "typical" childhood behaviors we never could have dreamed of when we received her diagnosis at birth. 
Samantha is a warm, funny, smart, sensitive little girl.  She's ready with a hug any time, but we've had to really start working with her on not hugging people she doesn't know or has just met, or kids at school, etc., pulling her aside and telling her quietly so as not to embarrass her in front of her friends.  Boundaries are important and a big lesson she needs to learn.  She wants to do the right thing, but is a bit headstrong and doesn't always think before she acts.  She genuinely feels bad when confronted with these things, but somehow can't stop herself from doing them.  She has some anxiety we can't pinpoint the source of, and will twist her hair into impossible knots that need to be cut out (if you see her twisting, she's lightning fast, but can be stopped if caught quickly enough).  She's a bit bossy, commanding people to play the games she wants to play, instead of going along with the games of others.  She has difficulty working as part of a group or participating actively in an activity.  This is something that concerns me most, as I know she can be a truly effective self-advocate one day - I would love to see her confidence grow and her anxiety disappear, to allow her to speak out for disability rights, to set an example and give hope of a bright future for people everywhere.  She has it in her, I know it. 
She's truly an amazing little girl who has blown away nearly every stereotype we'd been thrown, and she's my best friend.  I look forward to watching her grow this year, and am excited that you will get to know her and love her as we do.
Thanks for listening to me ramble!
Samantha's Mom 

Of course all the best ideas come to me when I'm in the shower in the mornings.  I suddenly thought of something I should have included.  If I could re-send, I would do so with the following line:

"Samantha struggles with the concepts of space and time.  Asking her questions about when or where will usually result in a completely random and incorrect answer.  For example, when I introduced quantum physics to her this summer, I was met with a blank stare.  I'm really hoping you'll be able to help out with that this year."

And, of course, I'd have to wait for a paragraph or two before letting her know I was kidding... (like she wouldn't have figured it out, right?) 

Anyway, the first week of school is going very well, and we're excited to see how the rest of the year pans out.  I have a vacation post brewing, ready to roll out one of these days.  And then, once September is over, I should have more time to write here more regularly. 

Thanks for sticking with me, and I hope the school year is going great for all of you with little ones!!