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 And probably already well out-of-date.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!!
