"Sharing" the Only Child with Down Syndrome

A while back I wrote about the need of parents of “only children” with Down syndrome to have the support of others like us, to have the understanding by others not in our situation of the uniqueness of our position, the specific challenges we and our children face that couldn’t be understood by the vast majority of the population, in the Down syndrome community or otherwise.  Sibling sessions are never uncommon at Down syndrome conferences.  Parents of a child with Down syndrome who also have at least one “neurotypical” child just can’t understand us, assume that things for us are exactly the same as they are for them.  We just can’t fully allow ourselves to relate to them, either, or, perhaps, it’s just a manifestation of the dreaded “J-word.”

JEALOUSY

(I'll let that word lie dormant for now, though, and move on...)

Seriously, for about 8 years, I thought I was just about the only one.

The only one who had ever walked this particular path.

The only one who was terrified of the future for reasons so different from parents of others. 

The only one who had absolutely no idea who would be able to look after my child when I’m no longer alive on this earth.

The only one who felt the cold sliver of fear and pain of sadness in my heart that I would likely never become a grandparent. 

The only one who wanted to send my child to school every day all day all year round because it was the only place she could benefit from interacting with other children.

It’s hard. 

And feeling alone is almost even harder. 

I mean, I don’t like to whine.  I would never have considered voicing those fears to a parent of neurotypicals.  Not only would they not really get it, I think, but they would likely also be quick to downplay my concerns.

Okay, so maybe I sell short the character of the vast majority of parents of a child with Down syndrome…  I know it’s unfair.  I know that most of you reading this post also fall into that category.  And, for that, I’m sorry. 

To be perfectly honest, I write what my primary feelings are/were/have been…I write from that place in my heart that is filled with love and worry for my beautiful, sensitive, innocent, unique daughter.  We all have that place in there, regardless of how many children we have.  And, whether mine is misplaced or not, it’s how I feel, and my concerns are real to me.

Two years ago, my friend Amy and I met for the first time on the last day of the National Down Syndrome Congress (NDSC) convention in Denver.  We were introduced by a mutual friend who knew we were both parents of “onlies,” and we embraced like old friends, as kindred spirits, each with the same concerns for our children.  We immediately recognized a need for outreach to all of us spread out there who had yet to find each other, had yet to find any kind of support. 

We began to think of ways we could get some sort of recognition at a future NDSC event, and, as a means of research into just how many of us were in this unique situation, 6 months later, my Down Syndrome and the Only Child Facebook group was born.  The response to the group completely bowled me over!  Almost overnight, I watched the membership requests surpass 100, and it kept growing to its current number over 200-strong!  Those who joined expressed so much joy at having found a place to just talk about it with others who totally get it, were excited to be a part of such an elite group so critical to our emotional well-being. 

Requests to The-Powers-That-Be at NDSC were made for a Sharing Session (an informal group session led most often by parents on the first day of the general conference, covering broad topics of interest).  After a few initial turn-downs, Amy and I were thrilled to get word that permission was granted, and an “Only Child” session would be included this year in Phoenix, with us as co-moderators! 

Today is Sunday.  I’m currently sitting on a plane returning home as I write this.  The high of the weekend in Phoenix will likely cling for another few days, having started from the moment my plane touched down there, with a true pinnacle at the moment Amy and I began to speak and lead a group of more than 30 parents who were excited to have found each other. 

Everyone introduced themselves, spoke about the biggest topics of concern they face as parents of onlies. 

Some cried.

I’m actually getting teary now as I write this. 

It was that impactful.

They were tears of worry.  Tears of gratitude.  Tears of just plain being overwhelmed and under-understood...lost...for so long.

And now found.

Maybe I make this sound super dramatic, but really, for me and for others, it was. 

It’s hard to explain the impact we all had on each other.  I actually feel really changed by that experience, and am pretty sure I’m not alone.

I’ll write more soon, in another post, about what topics were discussed.  But for now, I just wanted to re-live that feeling. 

The need for this group was obvious.  We need to make sure TPTB at NDSC know this.  For those of you who are reading this, who attended that session, or who would plan on attending a future session if it were offered (the convention will be held next year in Orlando, at the end of July), please send feedback of some sort to NDSC…I can provide you with e-mail addresses (I don’t particularly want to make them public here…just send me an e-mail at bateminx@yahoo.com and I’ll send you what I can!).

Thank you to everyone who moved me this weekend, and many thanks to the amazing folks at NDSC for helping to make this happen. 

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...

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.

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.