Tuesday, April 21, 2015

Vague Suppositions on a Tortured Soul

As if by the virtue of some cruel foreshadowing from birth, as if the product of sadistic parentage and the unconscious yearning for self-fulfilling prophecy, even his name was unfortunate..

Duffy.

Doofy... the children (monsters!) chanted, a mantra he heard and absorbed with a self-conscious smile, as if either to pretend to laugh along with the joke or to be completely oblivious of it  (oh, sweet internalization!). 

Oblivion would have been a blessing, I am sure. 

But I was not so sure he was that lucky.

I write this with the vagueness of the uninformed, but the sympathy of the enlightened - uninformed of facts or circumstances, sympathetic to the injustices witnessed by a teenage girl, too awkward herself to stand up for what she knows, deep down inside, is right, to condemn what is wrong, too happy to stand back and watch, in fear of becoming a target herself.  Surely she was not alone...

Children can be cruel.  Middle-school children doubly so.  7th grade is a time of terror and anxiety for most, a time when the ravages of puberty take their toll on adolescent bodies and minds, a time before conscience and consequence can take root and grow to create fine, upstanding citizens of its worst offenders.

I didn't know Duffy at all.  I actually doubt anyone really did. 

I knew him as someone with whom I shared a class or two one year, someone I passed in the hall, someone with peach-fuzz hair, a heart-shaped mole on his upper cheekbone, a nervous, squeaky voice, a social awkwardness that even the spottiest, longest-limbed teenager couldn't come even remotely close to, and, yes, that wholly-unfortunate name - someone who was easy prey, the bull's eye of a target painted square in the center of his truly innocent forehead.

Social awkwardness is par for the course in the life of a 12 or 13 year old.  But sometimes there are those people for whom there appears to be no relief in sight.  The ones that don't even fit the mold of that demographic in any way, shape or form.  And now, in the enlightened retrospect of a far more socially-conscious future life, I wonder how many of those out-of-the-box pariahs may have had other, more currently explicable forces at work, forces rarely recognized in those dim days of the early 80s (and 70s, 60s, 50s...). 

What happened to those children, young adults, adults, for whom no explanation was available?  Those human beings who lived on the fringe...on the spectrum...

I don't know that Duffy was on the autism spectrum. 

Maybe he was, maybe he wasn't.  But for many years now, as I have thought of him over and over in the years that have passed, I have thought that perhaps he was. 

I like to think that he was, like to hope that those who tortured him during those tender years might be wondering the same, feeling the shame of the guilty, if they even think of him at all...  I like to think that all of those other socially bereft souls like him had other forces at work, forces so far outside of their control, who now, in this socially-conscious future life, are vindicated by a diagnosis, as if that actually would make up for what they endured.

For years I've done internet searches on his name, turning up nothing...not a scrap, not a shred of anything to suggest he'd grown up to be successful, get married, even have a Facebook page, for crying out loud. 

Nothing...

Not a trace.

And the dread I felt before the internet was even created, the sense of foreboding I felt looming for him in all the years since I left that school district that very same year, the logical guess as to his ultimate fate, based on nothing more than pure supposition, remained with me.

And I continued to do internet searches from time to time.

And a few weeks ago, I may have found the confirmation that I'd been reluctantly seeking for so long.

An obituary.

Not for Duffy, but for  a woman whose age would be perfect to have been his mother.  A woman with a different surname, but from the same microscopic  town, survived by children with the other surname.  A woman who, the obituary stated, was predeceased by a son, Duffy...

That's all I've got.

And my mind views it as the ultimate tragedy, vividly creating the unknown circumstances of his death into a fully-realized play, one in which a pre-internet Duffy, perhaps not much older than the one I last saw in 1981, so overcome by the damage inflicted upon him by the monsters-with-no-conscience, could take the torture, from both within and without, no longer, and succumbed to something self-inflicted and brutally final.

I said I write this with the vagueness of the uninformed. 

I am uninformed. 

I know he lived. 

I know he suffered. 

I know he died. 

That is all.

The rest is purely speculation, supposition (fabrication?).

I wonder if I'm right...





Monday, March 16, 2015

In Pursuit of Melting

Samantha had suggested a few weeks ago, when asked for her opinion on what topic I should write about, that I write about exercise, because I like running.  While most of her suggestions of this sort are usually completely random and just a little nonsensical (I think playing doctor was another of her suggestions at the time), she hit the mark pretty well on this one. 

I run.

I love running.

It's something that, for years, I had been completely, totally, insanely jealous of others who ran, because I was pretty sure I couldn't do it.  From childhood, I'd always had pretty awful stamina, but, more importantly, I think, I just hated sports, hated sweating, and just convinced myself that that's why I couldn't do it.

As I got older, hit a few magical decade markers (you know, the ones that begin to show you just how quickly you're fading, how much the perfect body that could eat anything and exercise none that you'd lived with your whole life and took so completely for granted, could rebel so cruelly against you and everything you've mistakenly believed for so long) and began recognizing some harsh realities, I knew I had to do something.  And, with these ridiculously long legs of mine (do you have any idea how annoying it is to have strangers ask you constantly throughout your life if you play basketball, run track, etc.?), I wanted to run, wanted to feel that freedom, wanted to get back into shape, but worried I couldn't

About 3 years ago, I decided to take advantage of the local gym, the membership dues of which are included in my HOA fees every month.  Knowing I had to be home in time for my husband to get up and leave for work so I could be with Samantha and get her off to school, I woke 3 days a week, reluctantly, at the crack of dawn (a brutal 4:45, to be exact), dressed in the dark, and dragged my sorry, half-asleep backside into my car to drive the half mile to the sportsplex for 30 minutes of something that might resemble exercise.  I attempted time on the treadmill, spending the majority of the 30 minute allotment (time on the machine was limited to 30 minutes to allow others to get a turn) walking briskly.  Eventually I allowed myself a slow trot/jog/run...call it what you will...that further convinced me I just didn't have what it took to be a full-fledged runner

After a short time, my husband's job changed, and I no longer had those early-morning opportunities.

Ennui, complacency, laziness, filled with the tediousness of even thinking about exercising, busy with my day-to-day, watching my body change in unspeakable ways...left me feeling...defeated

Defeated by my inability to control my changing metabolism.  There are always solutions within my reach...

Defeated by my lack of self control.  Maintaining control is within my own power...

Defeated by my inherent laziness.  If I want this I can do this...

Defeated by my own defeatist attitude (can't...won't...couldn't...).  There's always a way...

That little voice in my head nagged and nagged at me, telling me that I should still be able to do this...that I needed to be able to control my destiny...? 

How profound...

So I bought a treadmill, started out slowly, and built up to where I am now, a year and a half later...ready to take on a 10k race this spring.

And needing a whole new wardrobe of clothing...

Yep!  How exciting is that!?! 

I had to punch another notch in my leather belt, and am actually able to pull most of my pants on and off without even undoing the button.  Actually, all those pants I've loved for the last few years now look pretty awful on me.

Somehow I managed to melt somewhere along the way. 

I've re-found some of the shape that I used to have, lost most of the muffin top that has plagued me for years, slimmed out my formerly colossal thighs, and built up some pretty rad muscles in my calves (is it weird that I keep flexing them under my open palm to feel how they harden and release?  that I'm obsessively absorbed in watching them as I do?  I've never had muscles anywhere before...).

I'm sooooo close to being exactly where I want to be, re-finding the glory of my pre-baby years...it's all within reach now.  And, most exciting, I need to buy a new bathing suit this summer!

But I can't stop here...next up...melting the flab in my upper arms.  Tomorrow I'm off to buy a set of hand weights to help me hit that goal. 

Inspired by friends and, most importantly, by my disgust at the image that met me in the mirror every time I stepped out of the shower, I made it happen.  I joke to people that I run to eat, meaning, I haven't actually done anything with my diet, maintaining relatively healthy meals, but not paying too much attention to it, and I don't check the scale very often.  I do have to remember that injury and old age will eventually make me stop, so I should build some other good habits into this for that likelihood, but for the time being, I just continue to pursue the melting I've enjoyed so much.



Tuesday, February 17, 2015

Finding My Way Back



I've been feeling a little sad lately.  Nothing serious, nothing to the point of despondency, distress or despair, nothing that will ultimately break me or cause me great emotional upheaval, but something a little less tangible... 

I've been feeling that something's missing from my life. 

A little something.

As a matter of fact, maybe some of you already know what this is. 

I've been missing a little piece of me that had been ever-present for nearly 7 years, something I'd all but abandoned over the last year, something that's been calling to me like a siren, my resolve holding fast to stand my ground and do what's best for me.

I have enjoyed the relative freedom of these past months, but...here goes...I really have missed my blog terribly.  I've missed my creative writing outlet, that one place I can empty my mind of the tiniest of thoughts that start as mere droplets then build to a full flood of ideas pooling and swirling, crashing in waves of words on a page.

There was a time when those words were a force in my life - I embraced them, sent them forth to whomever would read them.  They were cleansing, giving me outlet for issues relating to disability, for rejoicing the triumphs in my daughter's life, for seeking support and solicited feedback on what seemed like failure.  They gave voice to my hobbies, allowing me to share my photos, vacations, recipes...whatever I wanted. 

But, much to my dismay, they also became a chore or sorts.

Writing takes time.  And time is what I have less and less of anymore. 

Writing also requires inspiration, something I have been short on of late.  While this blog began as a running narrative on Samantha's life, I have been faced with new truths that I had denied for so long. 

The privacy dilemma is the biggest of these truths. 

A few years ago I got into a heated "debate" (I'll call it that because it sounds so much nicer than it was) with someone very close to me who voiced concerns about my apparent disregard for privacy in the lives of Samantha and those around her in my post content.  This person stated that there are many factors to consider - the parents of Samantha's classmates, and the students themselves as they get older, will read about the issues and concerns I have, information they really don't need, as it may influence their relationship with Sammi in a negative way;  family members in rather public positions may be associated with some of my more controversial perspectives when I don't anonymize names or places relevant to the posts, and especially when these posts and their content are searchable within Google.  It's complicated, and I still don't agree with all of the arguments made, but I definitely have worked to remove the posts of contention and minimize any kind of negative attraction my subsequent posts could possibly provide those who know her at school. 

It's been a real challenge.  And I, too, agree that that kind of minimization is necessary at this point in her life.

But, by the same token, there's actually not a lot of stuff going on at all to even write about in the first place.  Our lives are, essentially, ordinary.  Samantha's doing well at school.  She is certainly not at the level of her typical peers, but she's accepted and supported and is learning, and there are no real concerns to note.  I don't need the support of my peers at this point in time, nor is there anything remarkable to report.  I've heard this is the pitfall many bloggers of older children discover at some point.  I've stepped back a little from my involvement in the community, as well, so there's little to discuss there.  My social media presence has taken a hit and I'm completely in the dark about what anyone's been doing lately, either on Facebook or in the blogosphere. 

So I struggle with topic

Oh yeah, and that pesky issue of time

While becoming a bit of a hermit has suited me fairly well, I still miss my words, and will try to move forward by acknowledging my need for their returned presence in my life.  I'm not sure what I'll blog about, only that I resolve to do it. 

I asked Samantha today what I should write about.  After first turning down her suggestion that I write about playing doctor, she offered that I should write about exercising, and how I love running.  I think that's a fantastic idea, and one that I'll likely explore later in the week. 

If you're reading, I am grateful that you are sharing this with me.  But I had lost my need to write for me somewhere along the way, and I am thrilled to say I am back in search of my mojo.

 

Tuesday, November 11, 2014

Teaching Humanity

A co-worker was recently telling me about a situation her daughter was having at school.  She had just started middle school, and a boy in her class was intimidating her.  He had a menacing stare when he looked at her, he behaved in a way that suggested he wasn't a very nice kid, and he was just. plain. BIG.  I give this girl huge props for telling her mom about it.  She was unsure of what to do, and felt afraid.  Her mother, a former educator, pieced together some of the information her daughter had relayed to her, and thought that perhaps this boy had some sort of learning/social disability.  Upon doing some checking, she discovered that, indeed, he had autism, and his signals were likely being misinterpreted.  The daughter, a very sweet young lady with a real desire to learn and to help others, who had come to our Buddy Walk and absolutely loved it the year before, wanted to know what she could do to break the ice with him.  Her mom suggested she find something he's interested in, and bring him something related to that. 

He was interested in Star Wars.

She brought him a book. 

And they've been friends ever since, with a bond likely never experienced by either of them before. 

Her eyes are open now, to others who may be misunderstood, who may have problems adapting socially, who just need a friend.

She's a Girl Scout.  Last month, the girls in her troop were given a project to do research on a topic and present it to the group for a badge.  She told her mom she wanted to do her project on Down syndrome.

Can you see me smiling from wherever you are?

This young lady is one of the people who will go on to change the world. 

This young lady is paving the way for acceptance, tolerance and respect for people with differences.

This young lady is teaching lessons in humanity

To say I'm truly impressed is an understatement.

I told her I'd love to be her mentor on the project, to help her with some of the information, and to be there on her presentation night to answer any questions, and she's excitedly accepted my assistance.

I'm really not sure who's more excited, her or me...

A different co-worker approached me a few weeks ago to tell me that he'd just discovered that his niece was in Samantha's class.  He doesn't live in our town.  He probably didn't even know what town I live in.  Curious, I asked him how he'd pieced together that information.  He said that he was in the room with his sister when his niece came home from school, excitedly telling her mom about a little girl in her class that she absolutely loved.

A little girl with Down syndrome, named Samantha.

My co-worker has met Sammi several times, and figured it out immediately.

How cool is that?

A little girl in her class that she loves...

This is 3rd grade.  Any differences are totally obvious, laid bare, ever-present and part of the day-to-day. 

My daughter is accepted by her peers.

Yes, I knew this already, but this year she's in a class with all new children, only two of whom she'd had class with before.  A whole new crop of kids exposed to her larger-than-life personality, her quirks, her idiosyncrasies, her endless supply of stubborn

And they accept and love her.

They, too, will go on to teach others the same acceptance, tolerance and respect.  They, too, will teach lessons in humanity

The world will continue to become a better place for everyone, one new teacher at a time.



Monday, October 6, 2014

Day 6: 31 for 21: Trying Too Hard

So, as I knew I would, I missed a day yesterday.  It was our Buddy Walk, so we were out of the house early and pretty beat by the time we got home.  I was just going through some of my old posts to see what I could give you today, and came across this one, from October of 2010, when she was 4 years old, about trying to make fun, positive, memorable experiences for our children.  A lot of what I had written below still holds true today, although my understanding of Samantha's reticence has grown and my ability to recognize triggers and environments that will not work for her has become more finely-tuned, so I'm able to avoid them.  Samantha is able to give me her own opinions about things, so sometimes just asking her will give me the answer I need before we barrel into a situation that becomes unpleasant for us both. 

It's not easy for a lot of parents.  It hurts when our children are unhappy, and it hurts when our children resist things that we, ourselves, would deem as highly enjoyable.  We expose them, little by little, to new things, new places, new ideas, we hope they will adapt more as they grow, and we learn to make concessions to avoid what we know to be disastrous.

Are there things I wish Samantha would enjoy doing?  Ohhhh, yes...  I could go on and on about those.  Have I set them aside and stopped badgering her about doing them when she clearly doesn't want to?  Mostly.  Am I hopeful that one day she'll change her mind or her triggers (whatever they may be) will disappear and she'll be ready, willing and able to do them?  Absolutely.  But I won't count on it, just to be safe.

October 4, 2010

Sometimes I feel like I try too hard to ensure that Samantha is having great and varied experiences.  I'll read the blogs or Facebook posts of other people and wonder, "why can't we do that?"  For example, people will take their young children (including those with Ds) camping, or to ball games, or hiking, or to music festivals.  And I'll just think, "no way on Earth will Sammi sit still for that," or, "she'd have a meltdown - not worth chancing it."  But I think we should.  Lastnight we watched a sitcom rerun where a married couple accidentally picks up the wrong family's pictures at the drugstore photo-processing counter.  They become obsessed with the idea that their lives are dull and that they should try to do all the wonderful, adventurous things the other family did.  So they tried, and felt rediculous.  They realized that their lives were rich enough with the experiences they had, mundane as they may seem.  A pretty timely program to have watched after yesterday, but I didn't actually realize it until now, as I write this post.

So I do try to take Samantha to different places, but her difficulty in transitioning often leads to frustration for me, and, what I perceive to be torture for her.  Granted, she's certainly better than she used to be.  And sometimes she really does have fun.

Yesterday started off well-enough.  It was probably the most beautiful day we've had in about 4 months.  I had gotten her pretty excited about going to a pumpkin pick on a farm run by a lovely family who open it up to our Down syndrome association every year for a day of festivities and celebration.  Her aide, N., came with us.  I'm always happy to have an extra set of hands, and thank goodness I did yesterday.  Samantha, who has remained dry for all but sleeping hours for the better part of a few months now, fell asleep in the car on the long ride to the middle-of-nowhere.  She was wearing a pull-up (I haven't gotten brave enough to eliminate them yet).  She was soaked when we got there.  Sopping wet.  Complete nappy failure.  And, horribly ambitious (?), optimistic, unprepared mom that I am, I didn't have a change of clothes.  Or a clean pull-up.  What kind of mom does that???  Ugh.  So N. stayed with Sammi at the car while I ran to the group to filch off the good-graces of a few folks with kids that may be approximately Sammi's size.  Bingo.  A fresh pull-up and a pair of pants.  Hooray! 

Next adventure of the day, a still-tired, super-cranky child who became obsessed first with cookies, then with an open police car, set up to allow kids to explore.  Pulling her away and re-directing her from both was not pretty.  But we were there to take a hay ride out to a field to pick pumpkins, and damnit, that's what we were going to doThat was the wonderful experience I was bound and determined to make for her.  Here was the result:

 
 
These photos really, really pain me.  I feel so guilty for dragging her out there, forcing her to pick out a pumpkin, forcing her to sit for a photo that she didn't want to sit for, but that I wanted to have so we could see later what a fun time we had.

I'm pretty sure PMS fueled some of my own crankiness and insistence.  But it's not like she didn't have any fun at all...there were moments, mostly captured by someone else's camera, since smiling for mommy was not on the agenda. 

 
By the time we got back to the car, we were all completely done.  Nothing could possibly feel better than to sit in the air conditioning and get the heck home.  Except a quick need by Samantha for the portable potty I carry around in the trunk.  As I loaded up the car, N. pulled Sammi's pants down to situate her on the little toilet.  Unfortunately, there was a miss, resulting in the soaking of the borrowed pull-up and the borrowed pants (sorry, Heather!  They have been re-washed, though...), and there was a bottom-less ride home.

Sammi's gauge of how people are feeling when she suspects something is amiss is to ask, "you happy?"  On the ride home, she said, "N., you happy?" to which N. replied, "Yes."  N. said, "Sammi, are you happy?" to which Samantha replied, "Yes.  Mommy mad."  Yikes.  (Reassurances to the contrary followed, btw.)

When it rains, it pours.  I know I probably just need to chill out a bit, take the time to smell the roses.  Put my camera away...? 

Nah.



 
 
 

Saturday, October 4, 2014

Day 4: 31 for 21: 2012 Q&A

I posted this back in 2012 during 31 for 21.  It was Part II of a Q&A.  Happy Saturday, everyone!

____________________________________________________________________

October 2012

I'm a little bit sad because I don't actually have anything to do planned for this weekend.  And, like I said in yesterday's Q&A, I feel guilty for those lazy weekend days when we don't do anything.  Especially if the weather's as beautiful as it's supposed to be tomorrow.  Ah well, there's always a pumpkin patch/petting zoo/library/mall/playground just waiting for us.  Maybe it's time to pull some playdates out of a hat...

So, back to answering questions, here's one of the triple-barrel variety:

Q.  When did you feel like everything was okay?  And when did you stop wondering what others thought?  And where is your favorite place to shop for Sammi's amazing clothes? 

A.  Good questions!  Feeling like everything was "okay" is pretty relative.  While still in the hospital, with the support of my husband saying everything would be okay and the information given to us by the social worker showing me a glimpse into a possible future for Samantha, I kind of felt like things would be okay.  Like we could do this after all.  But was I truly okay with it?  Not at all.  It wasn't an overnight transformation, although I was able to put on a brave face and show people, honestly, how in love with my baby I was, how happy I was to have her.  But I did mourn the child I didn't get, the future she certainly wouldn't have, and the struggles she would have to face.  How can I protect my child???  That was what really broke my heart. 

As Samantha grew and thrived, both before and after her open heart surgery at 4 months, her personality began to really shine through.  The brightness in her eyes and her smile, the magical way she captivated us and anyone who came into contact with her, her strength and determination, that's what really made me begin to realize that things would be really okay.  Already, the vision of that blank, slack-jawed, woman-child shuffling along behind me was gone!  Just like that.  Already, I began to see snippets of our future lives together, the things we would do, the things we would see, the things she could accomplish.  And then I knew it would be okay.  Certainly, it wouldn't be without bumps and struggles, but those were nothing compared to what I'd originally envisioned. 

It took a bit longer to stop wondering what others thought.  I never actually worried what they thought of Samantha - she usually had everyone eating out of the palm of her hand on first glance, and I never had reason to think people had negative thoughts about her or about Down syndrome.  No negative comments, no sideways glances, no signs of disdain.  But I had this weird, irrational thing in the first year where I worried that, because I seemed (was!) so happy with my daughter, because I didn't wear a my daughter has Down syndrome badge on my arm or across my forehead, that people would think, "oh, poor thing, she *doesn't know.*"  Irrational, like I said.  And so, during that first year I felt compelled to bring it up in conversation all the time, usually with complete strangers.  I'm sure part of that was born out of my need to talk about it myself.  I'm not exactly sure what spurred the turning point after that time, but just after she turned 1, I began blogging.  I'm sure it's no coincidence that that's when I stopped caring what others thought.

Okay, fun stuff - Sammi's clothes!!  Stay tuned for my new blog I'm going to put up, likely not until the new year when I can get everything together.  It'll have photos and information about Sammi's clothes, and where to buy cute kids' fashions without spending much money.  In the meantime, I'll tell you I get them from any number of sources.  I buy bits and pieces that can be easily layered or combined with others, almost always on sale.  We have a great children's thrift store selection nearby where I've been lucky to obtain some amazing finds!  But as far as retail stores go, I usually get things from Target, Naartje (check out their website - amazing prices and sales, gorgeous stuff!), and Children's Place, along with anyone else who happens to be having either an end-of-season or going-out-of-business sale.

Stay tuned for the next set of questions!  Thanks for indulging me...  :-)

Friday, October 3, 2014

Day 3: 31 for 21: Wonderful Wonderful Life

Steve put this video together back in 2008, when Samantha was just a month shy of 3 years old.  The song's lyrics are so fitting, and the images, all tied together in a montage of her first 3 years, show the unadulterated joy this amazing child brought and continues to bring to us.  It shows just how wonderful life really is, how Down syndrome has not brought us sorrow or sadness, despair or darkness.  If I can pull it together, I'll do a follow up to this, broadening the scope of time as it has passed now over these 8 years she's been in our lives.  There's so much to show, so much to tell. 

Enjoy. 

  video