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The Bates Motel

Updated: 2017-07-28T02:22:38.035-04:00


"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 talkabout 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[...]

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 be[...]

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/ 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&n[...]

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, 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 ye[...]

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.[...]

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, 2010Sometimes 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 [...]

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 2012I'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[...]

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. 


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Day 2: 31 for 21: A Lifetime of Happy Heart Days


I missed an important 8th anniversary this week.  One that gets harder and harder to remember every year, as it gets pushed further and further into the past.  I still pay homage to it, albeit a bit later every year, and it is still something present in some way, even as a tiny, brief flicker of a thought when Samantha is changing her clothes and the wide white snake of scar tissue plunging down her breastbone becomes visible for a moment.  But really, it's something that's just there, now.  And, when I stop to think more carefully about it, to realize its implications, I am eternally thankful for its presence.Today I thought I'd go back in time a bit today - to an anniversary when the memory was not so distant, 4 years post-surgery.  The post is old, but the sentiment will always remain.__________________________________________________________________________9/29/104 years ago today, I handed my sleepy, happily cooing, probably very hungry, nearly 4-month old girl over to two nurses and a gurney. We’d gotten up at the crack of dawn from our lumpy bed at Ronald McDonald House (a truly amazing place!) and headed over to CHOP (an even MORE truly amazing place!) where we waited for what seemed like hours in a room that was way too cold to justify the teeny tiny lightweight cotton hospital gown they made us put on her. I had asked for and received some towels or receiving blankets to put over her to protect her from a chill, ignoring my own chilly discomfort.Just hours before, as we were getting her ready for bed, Samantha decided to grace us with her very first all-out belly laugh. Imagine the guilt we felt at that, knowing that it could be a very long time before we would see that again. Maybe somewhere in that baby brain of hers she would forever associate happy laughter with the pain and discomfort of impending surgery. The mind is a complicated thing, after all. Our surgeon met with us briefly in his office to explain what he would do and what we could expect. Then he left us to trade his 3-piece suit for scrubs, a mask and gloves, his uniform for the delicate procedure ahead. I kept looking at his hands, thinking about how they would soon hold my daughter’s life in them. But we trusted him implicitly. He is, after all, one of the best in the world. Can’t do much better than that.Then we waited. There wasn’t any wringing of hands or pacing – we knew we could only. just. wait. Ate breakfast, wandered the halls a bit, anything to keep busy. We got word from a nurse after only two hours that the surgery was over and the surgeon would come see us shortly. He said everything went very well, that Samantha was successfully taken off all of the machines, including her breathing tube. It wasn’t until more recently, when I’ve read the blogs and heard the stories of people whose children had to be weaned from that tube to breathe on their own, that I realized what a huge thing that was. Again, I was fascinated by the surgeon’s hands and what they had just done and what they had just held. 4 days later we came home with an oxygen tank that we were able to shed in just a few weeks. Again, it wasn’t until more recently that I realized what a HUGE thing it was, too, that we were able to come home so quickly. A perfect repair, with a slight residual murmur. No need for future repairs, no long-term medication, no restrictions on activity. Just our baby. I’ve been seeing a lot of Happy Heart Days in the last week or so, announced via blog and Facebook. I love that so many people have this miraculous event to celebrate, to look back on as part of the distant past. To me it’s more of an early Thanksgiving. Thankful for my healthy girl, thankful for that joyful belly laugh that we hear every day.[...]

Day 1: 31 For 21: Let's Roll...



I wasn't going to do it.

I wasn't even going to entertain the thought of doing it.

I didn't do it last year, although I did feel the pull of it, the desire to do it, the need to take advantage of it...

But, in the pre-dawn hours of semi-sleep this morning, when my body had decided that 7 1/2 hours of fairly restful slumber was quiteenoughthankyou, I started thinking about it. 

And I had an idea.

31 for 21 (thanks Michelle!) is the way Down syndrome bloggers have to commemorate the month of October, also known, in our circles, as Down Syndrome Awareness Month.  By blogging all 31 days to help bring awareness of, advocacy for and information about the 21st chromosome that graces the complete corporeal existence of our loved ones with Down syndrome, we can put so much out there for the enjoyment of our peers, the assistance to new parents just starting out on this amazing journey, and new and enlightened understanding to those not connected in any immediate way to the Ds family.

My idea stems from the fact that I have very little time to blog these days, and a whole 7 years of posts stored here.  7 years of writing that may have not seen the light of day in, well, perhaps 7 years

896 published posts (okay, 897 by the time this one hits the blog) to choose from, to enjoy all over again, to re-share with all of you this month by re-posting some of my favorites that pertain to the awareness of the beautiful and often misunderstood 3rd copy of the 21st chromosome found in the genes of more than 400,000 people in the US alone. 

Today I'm just posting to let you know I'm gonna do this, gonna take the plunge, gonna bring back some moments from the dark, dusty, nearly-forgotten corners of this blog, and to  invite you all to enjoy the ride with me - I'm excited about this!  There will be some new material written, too, so keep an eye out for that.  And for you bloggers who may be reading this, I pledge to read as many of your posts as possible, and will drop you a comment or two to let you know I've been there.   

So, Happy Down Syndrome Awareness Month!  Let's roll!!



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...[...]




So, there's this time that comes up every year...  It falls just, 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!

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 an[...]

Flowers for Algernon and the Development of Cognition-Enhancing Drugs for Down Syndrome


I wrote this post back in 2009, before I learned so much more about clinical trials and the cognitive drugs that are on the horizon for people with Down syndrome, and know that they're not designed to *change* anyone. I also wrote this before I learned of the devastating increase in early-onset Alzheimer's disease in people with Down syndrome and the need to find answers that will benefit not only people with Ds, but with the human population as a whole.  I find my perspective in this interesting, though, written when Sammi was just 3 1/2, when I was quick to jump up on my high horse and decry any kind of perceived social injustice against people with Ds or other cognitive disabilities. Would I support the cognition-enhancing drugs that are being tested now? DEFINITELY. If, as they're purported to be, they're safe and proven effective and help my daughter increase her academic and self-help skills without changing her personality, bring 'em on.   November, 2009I read a very interesting article yesterday, posted in Wednesday’s Los Angeles Times newspaper. In a nutshell, it documents research currently being conducted to develop a “cure” for Down syndrome. Setting the fundamental intent of the article aside for a moment, I need first to harp on a few little details that are grating on me like nails on a chalkboard (or like Samantha grinding her teeth!). I thought reporters were supposed to do their research first before writing an article (especially for such a highly circulated publication!). The term “cure,” used several times in the writing, is tremendously inaccurate. Down syndrome is caused by an extra copy of the 21st chromosome which is present in ALL of the cells (unless the person has mosaic Down syndrome, where only some of the cells have the extra copy). You can’t “cure” that. Now I’d swear that the first time I read the article, they referred to people who “suffer” from Down syndrome (as many articles tend to do, which drives me crazy), but now, upon re-reading, I don’t see any reference to that. Could they have changed the wording somewhere along the way? Maybe I just wanted to see that so I could be extra-annoyed. Just as an FYI, my daughter does not suffer in any way. While I would have preferred it if she had been born without a heart defect that she needed surgery to repair, she’s certainly not suffering! Finally, the article calls Down syndrome a “disease.” Uh, correct me if I’m wrong, but genetic issues are not diseases. I feel like that wording perpetuates the fears of the ignorant that they can actually “catch” Down syndrome. At least People First language was firmly in place throughout the article. Now, the intent of the article was to explain that research has shown that the brains of people with Ds are unable to make norepinephrine, a hormone and neurotransmitter. The drugs Droxidopa and Xamoterol both convert to norepinephrine in the brain, and in mouse trials, mice with a replicated version of Down syndrome responded with increased, “normal” cognitive functioning when given Xamoterol. However, the effects were short-lived, and the mice returned to their previous state quickly. While I do find this research very interesting, as soon as I read this, I was reminded of Flowers for Algernon, a book by Daniel Keyes written in 1958. I read it for a class in 9th grade, and was immediately both haunted and obsessed by this bittersweet tragedy about Charlie, a man with a cognitive disability who becomes the first human to undergo an experimental surgery to increase his intelligence artificially. A mouse named Algernon was the first successful recipient. Throughout the s[...]

The Cautious Child: Down Syndrome, or Only Child Syndrome?


Gregarious to a fault, loved and supported constantly and unconditionally by family and peers, smart, funny, outgoing.  Graced with an extra chromosome, something that fills my head with images of people who are easily found on the dance floor, as a member of a cheerleading squad, an active participant in Special Olympics, loving baseball, soccer, ballet, swimming, face time in the spotlight of all things fun.The formula would suggest self-confidence, a willingness to learn and grow through the trial and acquisition of new skills, carefree and flirtatious towards the lure of the unknown.  The formula would suggest a lack of inhibition, an ability to enjoy FUN things, to need constant stimulation and activity.The only child of an only child.Now the formula changes, begins to take on a new form, morphing into something completely different.  I have long believed in Only Child Syndrome, and thought I'd made up the term until just now when I thought to Google it.  It turns out that there are many others like me, who can easily acknowledge and name the vast array of benefits and challenges unique to those of us raised on our own.  One site outlined the following characteristics:Conversation skills develop early - only children learn to converse with adults better than their same-age peers.  This is true for Samantha.She has strong opinions, and a sense of entitlement.  What's mine is mine...She enjoys her down time, her alone time, her comfort zone of being at home.And a tendency to be *extra* cautious.  This one was not listed on the site, but I'm curious about its causes.I was the same way, to a point.  I remember being terrified of learning to swim, of diving at summer camp for the first time, of strapping wooden sticks to my feet and sliding down a snow-covered mountain (teaching me to ski was likely torture for my parents and my ski-school instructor, although thankfully I'm a proficient skier today), and I even remember being terrified as a toddler being strapped into the child seat on the back of my parents' bikes.  There's fear in not being in complete control of your environment.  I have learned that as an adult.Samantha is terrified of swim lessons, will scream bloody murder and hold onto your neck in a death grip of fear.She is hesitant and resistant to trying new things, experiencing new experiences, going new places, participating in a group.  Ballet classes are out of the question.  So are sports.  We've tried.I feel like her resistance, her caution, comes from a need to be in control.  I feel like the need to feel in control can come from having been an only child, from not having a readily-handy peer model to back you up in new endeavors.  I'm not saying that's always the case, but I find so many little similarities in Samantha and myself.  But she takes it all to a whole new level.I actually started this post a few months ago, but put it on ice while I took my little blogging break.  But something happened on Saturday that really brought it all back to light.  Something that really shook me up, caught me off guard, and concerned me.  Something that takes the term "cautious" and gives it a whole new meaning.  She asked to go to the playground.  There's one in the school yard directly behind our house, and we started out there.  But she wanted swings, and the swings are in another playground a short distance from there, nestled between two rows of townhomes.  After pulling herself up onto the swing seat, she decided it was too hot, so she wanted to play on the climber to the sli[...]

And Now the *Real* Stuff About the NDSC Weekend


I touched briefly on our weekend at NDSC Indy in my last post, a broad generalization of our 3 days there, devoid of any real color or detail that might give you any insight into exactly what it was all about and what we got from it.  Indy was my 3rd NDSC conference.  My first, two years ago on my home turf in DC, was good, but I was beginning to learn the limitations of a child in a grown-up setting, in a place where the hustle and bustle of adults and the timbre of big voices and even bigger laughs and cheers can overwhelm a sensitive child such as Samantha.  Steve and my mother also came, but it worked out best when Sammi went home with one of them and I hung out there on my own.  My second conference was last summer in Denver, which I attended solo.  I was freed up to volunteer on the IDSC table, attend the film festival, and go to a few research sessions, where I learned some pretty amazing stuff.  This year I gave it another go, and took Samantha and my mother along with me to Indianapolis.  And Samantha hated pretty much every second of it.  Mom and I did some tag-teaming, each taking turns attending sessions while the other did the child-entertainment duties.  Happily, once we managed to get her out of the room each day, the child was open to holding court in the lobby (the unattended shoe-shine stand with its large, throne-like leather seats was her favorite venue) to read her books or play endless hours of "doctor" with any child who happened by.  On occasion the act of moving from point A to point B was cause for a tantrum or, much to my horror, doing a runner!  This kid is totally not an elopement risk, not a runner, but for some reason, most likely because she knew it would totally get a rise out of us, she made a break for it not once, but twice.  Once was outside in the lines at the food trucks (those are a topic for another post altogether, I think...those of you who were there are all probably nodding in collective agreement that the situation could have been a lot better...).  I proved to the world at that moment that yes, I do get really mad.  And yes, I do yell at my kid.  I'll never forget a voice behind me, as I bolted after my bolting child, saying, "And...we have a runner!"  In mid-stride, in my head, I was, like, "Me?  You talking about my kid?  No way..."With old friends, Kayla and LucasBut, other than that, the conference was really pretty fabulous.  I actually got to meet and spend time with many, many of my Facebook and blog friends, able to now put faces to names.  My mother learned what it was like to be related to Samantha, the star of The Bates Motel blog, when she got mobbed in a restaurant at lunch time while I attended a session.  Got a text message from a friend who had been present at said mobbing, telling me all about it, worried that my mother may never recover from it.She was okay.Whew.And so was my impulse-control-challenged kid who was completely disinterested in the mobbing, focused instead on getting her hands on Moxie's iPad...and the next day at lunch time focused on getting her hands on Moxie's banana...  Hey, Moxie, got anything else my kid can take from you??I think I've harped on enough about Sammi's bad behavior.A few quick notes about the hotel.  The JW Marriott is beautiful.  I'm completely in love with their bath products in the rooms (Aromatherapy Associates - dude, this stuff smells sooooo goooood, and totally luxurious - you only need a tiny bit of the shampoo, conditioner and body wash, unlike the watered dow[...]



I'm not one to name drop.  The concept embarrasses me, except in the company of close friends or friends who have absolutely no idea what/who I'm talking about.  I've always been the one who was cool and collected when meeting or bumping into folks with highly-recognizable names, hiding my nervousness and possibly coming off as extra-aloof, much to my horror.  But I've had friends who gush.  Talk about horror!  I actually have felt sorry for them, wondering what the other thinks of them for being so over-the-top in their face-to-face accolades and songs of praise.  Ugh.  Really?Maybe I'm just a snob, a crappy friend, a bitch, whatever.  But for some reason my fear of outright rejection in pretty much any social situation has gotten the better of me and kept me pretty calm, if not painfully timid to the point of sabotage, keeping my own, true self well hidden below the surface where nobody even thinks to look.  And then the moment is over, I bounce back, and it was like I was never even there, except in the cool, breezy rooms of my partially-constructed memory palace.This past weekend, I was pretty star-struck at the National Down Syndrome Congress (NDSC) conference in Indianapolis, which I attended with my daughter and my mother.  I feel like age and maturity have provided me with the tools to function more effectively and efficiently when nearly overwhelmed with awe at meeting people I respect highly and feel I know so much about.  I'd originally planned to hide behind my kid, but she was so miserable and downright rude to everyone, I was left to fend on my own.  Like I said, I don't like to name drop.  So I won't.  But I will say that rubbing elbows with such well-known scientists, writers, bloggers, founders, executive directors, self advocates, actors and doctors from the Down syndrome community was an incredible treat this year, even more so than in past years at NDSC.  I felt more of a connection as the names, mostly unfamiliar to me just two years ago, have bubbled up to the surface of my reality as a mother with a child with Down syndrome, as a person who continues to learn nearly every day, as a parent who is determined to do what it takes to ensure the health and well-being of my daughter into the future.  The names have become iconic, and important to me and to so many others.  They've become familiar and are respected by the community.  As star-struck as I was, I actually felt a part of their worlds.  Down syndrome has brought all of us, lay-people and superstars alike, together into this club, this special place that supersedes title, education, socio-economic background, residence, religion, race, national origin...  We are all the same.  We are all here for the same reason.We are brought together for our families, for our friends, and for those who have yet to discover this amazing place, but who will certainly be joining us in the future.Rock stars of the Down syndrome world?  Yes, they exist.  But knowing that we all share common goals brings us onto the same playing field, creating a learning environment in which we gather and disseminate information, creating a sharing environment in which we expose our feelings, our hopes, our fears and our opinions (and appreciating differences in those opinions), creating a huge family, in which we care about one another.NDSC Indy was a magical place.  I'm not going to name drop, but I will say a tremendous Thank You to everyone I met, everyone I spoke to, everyone I listened[...]

Party People


Party pictures are always so much more interesting when they include lots of people. You know, like at a party.  Parties really aren't much fun if there are only 1 or 2 attendees.  But I'm cautious of posting photos of people I don't have permission from, and often don't feel like taking the time to contact everyone's parents to see if it's okay to include their kids on the blog.  This time, however, to prove that Samantha was not the only person at her party, I have taken that extra step and gotten permissions.  Samantha turns 8 tomorrow.  How did my baby grow up so quickly?  I usually have her party after her actual birthday, since, at least before now, I was afraid it would be confusing to her to have the party first and have everyone tell her happy birthday, but not actually be that age yet, and then have everyone tell her happy birthday again on the actual day.  I wasn't sure how to explain that to her.  I'd originally had her party set for this weekend, following that tradition, but something came up and I was able to move it to this past Sunday.   And I knew that there would be no confusion for her.  I am loving that now it's easy to explain so, so many things to her that she completely understands.  It's a beautiful thing.  Every year I begin to obsess about Sammi's upcoming birthday party as early as February.  I am determined to be the ultimate crafty mom and do as much as I can myself, rather than buying pre-made stuff.  Not like there's anything wrong with pre-made, but I think the crafty stuff always looks better, even if it's not perfect.  Uh, like my cupcakes.  Okay, so I didn't actually make the cake from scratch, or even the frosting, but I did try my hand for the very first time with a piping bag, and was thrilled with the results!  This year, February came and went, along with March and April before I realized I needed to act fast.  I conceded that my crafty fantasy was not likely to happen, and that I'd have to settle for prefab.  But when I began to really think about it, I discovered that less became more, and I could still pull it off with a much simpler plan.The cupcake toppers were perfectly-hued felt flower stickers that came together in a package from Michael's, on colored toothpicks.  I left the backing on the stickers, and lifted it just enough to slide in the toothpick, creating an instant topper!I've never been a big fan of the little goody bags with random plastic toys and mini bottle of bubble stuff with a wand that's too small to use.  Maybe that's not what's given at parties anymore at this age anyway, since the last party I went to had the most brilliant guest gift ever, a gift card for a local froyo joint.  But again, I prefer the DIY approach, and Target's metal buckets in their dollar bins always serve as the perfect vessel and theme enhancer.  This year I added plastic pinwheels (went to 4 different Targets to find them, but wasn't able to get enough) and decorator flowers from Michael's (to supplement), mini gel pens, a glow-stick, a package of fruit snacks, a paper-pulp flower pot and some zinnia seeds in a little self-made envelope with planting instructions printed on it.  The ensemble cost less than $3.00 each to put together, and is far more interesting than most typical party favors, if I must say so myself!I re-used some garland decorations I made by hand for Sammi's party 2 years ago - who knew I'd get the opportunity?  [...]




Who'da thought that my last post, my brief return to blogging, a post about my running triumphs, my personal goal-setting and accomplishments, my love of running, would be followed up by this one, where I will talk about pain, disappointment, and setbacks.

I overdid it last week.

For the last 7 months, I've been running about 4 or 5 days a week, resting a day in between a set or 2 or 3.  Last week I ran  6 days without a rest day.  Granted, there weren't any great distances in the mix, and only 1 or 2 done outside where the path is so much harder than my cushy, shock-absorbing treadmill.  But not resting in-between may have been my downfall. 

Temporary downfall, I hope.

I sit here typing, at a time when I would ordinarily be running, thinking about the calories burned and how much closer I would be to fitting into some of my pre-baby clothes, celebrating the fact that I won't have to wear the fat-sucking, wet-suit of a bathing-suit-of-shame this summer, I have my left ankle soaking in Epsom salts trying to gauge how long I will be sidelined. 

It's not like I can go to the gym and do something different, like cycling or the elliptical, either, since my exercise window of opportunity is limited to 25 minutes a day between the time I drop Samantha off at school and the time I then need to get ready for work (and I'm still late for work every day...). 

And now I think this may mean that I need to come up with some blog posts to write to fill the gap. 

It's been so long, and I just don't feel like I have much to say these days. 

I could talk about the non-event of our IEP meeting, but it would be incredibly short and you'd fall asleep before the second sentence.  Have you ever heard anyone call an IEP meeting fun?

I could talk about Samantha's birthday party that we held 2 days ago, but honestly, it was pretty much the same as the last 4.  Same location, similar pics.  I will still post something about it, but I'm not in any great rush.

I could talk about, uh, ummmmm, well...

Yeah, that's about the extent of things. 

Not exactly stimulating reading. 

Our lives are pretty basic, my camera woefully under-used these days.  The kid still continues to amaze me every day, and purposefully makes me laugh constantly

But that's pretty much it

I'll try to get my creative juices flowing again, perhaps inspired by the now-lukewarm water my foot is soaking in.  I think that's a sign it's time to pack up the keyboard for today.

In the meantime, if any of you have any brilliant home remedies for quick recoveries from tendonitis, please pass them my way.  I'm missing my morning runs terribly right now. 

Racing for Respect and, Apparently, Hardcore Points


I had been envisioning my first 5k race, in front of the US Capitol, to be covered by a blue sky and warm sun, mild and breezy, framed by the pink blooms of awakening cherry blossoms.  It was to be at the very end of March, after all...But what I got for my first 5k race was something very different.  Grey, windy, rain-soaked, and a bone-chilling cold that saw snow in most of the area later the same afternoon.  Go figure.  I was more than happy to run in it, knowing that once I got going, the warmth in my muscles would eclipse what was going on around me, but I was concerned for Steve and Samantha, who were coming to support me.  I'd been talking up the Kid's Dash to Samantha for weeks, promising her I'd run it with her, convincing her that it would be so much fun.  I couldn't just turn and tell Steve to keep her at home, having her miss a memorable event for a cause that benefits people with Down syndrome in our region.  No way.  Gotta toughen her up, right?  Ha.I did tell them to go find somewhere warm to go while I ran my race, then re-join me in time for the Kid's Dash, which is exactly what they did.  But, after I completed my own portion of the race, they re-emerged in time for the Kid's Dash, and Sammi ran, giggling the whole way, holding the hands of myself and a friend.  The highlight of the day?  Seeing her so proudly holding up the dog tag given to her at the end, hoisting it above her head, shouting, "I won!  I won!"  Priceless.Proudly displaying her prize And I have heard that people who run in those kinds of conditions get a hardcore point status elevation to heights of legendary proportion.  Well, perhaps in our own minds, which is what counts most, right?  I went on to run one more race this season, last weekend, in my own neighborhood, in the beautiful weather I'd hoped I'd have.  I finished in good time, 87th overall out of 272, and 3rd in my age/gender group, out of 15.   Mission accomplished. Crossing the finish line After the race [...]

C'mon, Ya Gotta Do Better Than This...


I am not happy.Not happy at all.Actually, I'm pretty peeved.A while back I received the class newsletter or a parent update or whatever via e-mail, listing all of the upcoming activities.  I've learned to be careful to make note of some things and put them on my calendar at work so I don't miss them, like the all-important Number Shirt Day, or the class field trip, or Pajama Day, or Crazy Hair Day.  I mean, it's not like Sammi's going to come home all excited to tell me about one of them with any real reliability.So, all of those things were on my calendar.  Actually, I put them on my calendar for the day before, as a reminder, so I'm sure not to miss it.  Today was to be Crazy Hair Day.  And, to be absolutely sure that it was the right day, I went back to the school's website and clicked on the student newsletter yet again, and yes, there it was, still listed for today.  I got the calendar notification yesterday, and had planned to go to CVS to buy some fun colors to put in her hair.  I was accused last year (jokingly, of course) of sending her to school as if it were Cute Hair Day, because it really wasn't very crazy.  So I knew I had to do better.  I didn't make it to CVS, but on-the-fly this morning, I braided ribbons into her hair and yes, if I must say so myself, it was pretty awesome.  Perfectly crazy, perfectly cute, as it should be.  And you know what?  Sammi loved it.BUT...As I was packing up her backpack, I caught a glimpse of a flyer that had been sent home in yesterday's monster paperwork packet of stuff-that-comes-home-and-sits-in-the-pile-until-I-have-a-minute-to-look-at-it, that said something about today being Wear a Hat Day for cancer awareness or something.  Like I said, it was just a glimpse, and we were in a hurry to get out the door.  I figured either/or, it had to have been optional.BUT...When we got to school, there wasn't a single. strand. of. crazy. hair. in. sight.  Except Sammi's.Just hats.I asked one of Sammi's former aides, who was standing outside directing the morning drop-off traffic about it, and she said it had changed.I asked if Sammi was going to be the only kid in school with crazy hair today.She said, "Pretty much."Looking sheepish, she said they'd made an announcement about it yesterday.And no, there was nothing on her communication paper about it. And yes, I'm pissed.So, while I was voicing my displeasure about it, my happy, excited and oblivious (for that moment) daughter rushed into school without saying goodbye, without a goodbye kiss, only to head into what may have been disaster.  I don't know. Her former aide suggested I go home and bring back a hat for her to put over her crazy hair, so I did.  It was just a baseball cap, and I gave it to the aide to take to Sammi.  I hope it worked, but I don't even know if it would fit over the braids.  But I'll tell you this, I do not want my daughter to feel humiliated, different, left out.  I do need additional assistance in getting this kind of information to us so this kind of thing doesn't happen.  If I read absolutely nothing else from Sammi's paperwork when I get home, I do ALWAYS read her communication page.  It's my only insight into her day.  The other stuff can generally wait.  And if they're going to make a big change like that, the kind of change that can isolate or embarrass a child if the message doesn't come across, especially a child with an intellectu[...]

Seizing Teachable Moments and the Value of Shame


Our kids are like putty in our hands - soft, and deliciously squishy, of course, but also malleable, shapeable, editable, teachable.  As I'd said in my post yesterday, it all generally starts with the parents, or with grown-ups in a position of trust with our children.  But do we always teach at all of the most appropriate times?  Probably not.Sometimes it's out of fear of giving the wrong information, sometimes it's out of ignorance, and sometimes it's out of our own discomfort with the topic at hand.Learning to recognize and seize these "teachable moments" is as valuable a lesson for us, the grown-ups, as it is for the children with whom we speak.  And don't get me wrong, teachable moments are not only reserved for children...there are plenty of adults who benefit from a bit of schooling as well (although in these cases it's best to choose your battles and your moments wisely...)...I recognize a teachable moment not as a time when math calculations or correct spellings are sought, but as a time when morals and values, manners and information that impacts other people, need to be addressed for the sake of the greater good, for the innocent mind, for the innocence and well-being of others.And teachable moments are the ones that are remembered best by those on the receiving end.  How many of you recall the residual sense of shame for having been called out as a child for doing or saying something that, in retrospect, you felt bad about, that you felt that you should have known better about before doing/saying, that you vowed never to do again?For example, I recall, when I was about 8 years old, going to my piano teacher's house after school for my weekly lesson.  A loquacious child, I was always brimming over with the need to talk, to spill out the details of my day, or, perhaps, just to hear the sound of my own voice (perhaps a by-product of being an only child!).  One day, I went in to her studio, where she was finishing up with another student before me, and began to chatter.  She stopped me in my tracks and said, "I'm talking - you need to wait until I'm finished, then say excuse me."  Well, I think my face turned every shade of pink and red at that moment.  I learned a very valuable lesson that day, and kept that moment in my mind for the rest of my life, carrying it with me like a badge of...not shame anymore...but honor.  I'd learned something important that day, and was on my way to becoming a better person for it.So, before I go too far out into left field, too far astray from the point of my topic, I got feedback from Friday's school airing of Just Like You.  Samantha's teacher sent me an e-mail recounting some of the conversations that took place afterwards.  And, other than Samantha pulling up her shirt to show everyone the scar where "the doctor fixed my heart!" (whoops!), the children said some very interesting and insightful things.  One boy stated, "Hey, that's the same disease Samantha has!", to which the teacher replied beautifully, "A disease is a sickness.  Samantha is not sick, and Down syndrome is not a disease."Another boy recalled, out loud, that he had been very impatient with a boy in his after-care group who has Down syndrome, and that he realizes now that he should be more kind and more patient.  He said he couldn't wait to see him again so he could apologize to him.  U[...]

The By-Product of Awareness



I've really got to hand it to the parents in the community in which we live.  They are so incredibly accepting and want desperately to pass along the correct values to their children to help them to be the most well-rounded, kind, generous, good people they can be.  Maybe the generalization is a bit too broad here, but my experience has been so positive that I am continually amazed. 

Maybe I'm selling their kids short by putting the onus all on the parents, but isn't that how it usually goes?  What the parents fill their children's heads with is what their children will go out into the world believing, at least in the beginning. 

I try to become Facebook friends with as many of the parents of Sammi's schoolmates as I can.  It's incredibly useful from a networking standpoint, but it also serves a much broader purpose - my daily advocacy for my child is front and center to whomever reads it.  If I can reach those parents, I hope they will, in turn, impart some of their new awareness to their children, who will, in turn, pass it along to their friends and carry it with them throughout their lives. 

I had a Facebook conversation with one mom last week about World Down Syndrome Day.  She wanted to know what she could do to support Samantha, and to help increase awareness.  I told her that many people will wear blue and yellow (two colors Samantha doesn't actually have, by the way).  She then posted something on her wall about it and said she'd have her daughter wear the colors.  Another mom of two of Samantha's school friends must have seen one of the posts, too.  After the Just Like You video was shown to the school population (the feedback from which I have not yet received), one of the girls wrote the note shown above. 

Brings tears to your eyes, doesn't it?

Protector and friend.

And if there's one, there are others, you can be sure. 

A Day in the Life - (Repost for World Down Syndrome Day)


 Down syndrome.Oh, those two little words, so simple, so innocuous when phrased alone, as individual entities living on separate orbits within my brain, within my conscious or subconscious thought.Oh, those two little words, so powerful, so fraught with fear and prejudice, so terrible, able to make a grown man cry, able to change the lives of entire families in just the blink of an eye, with the mere utterance of them side-by-side, starting with a capital, ending with a period, together, linked, inseparable.Inseparable.I knew them before I heard them, but I had no idea what they meant.I knew the power they evoked at a time when joy and excitement were abruptly and unexpectedly replaced by sorrow, terror, and fear of the unknown.I clung to images of hope found in pamphlets and on blogs when, in my mind, I saw only a bleak hopelessness, nothingness, a non-child.And, gradually, I learned.  I discovered.  I began to embrace a future that I was finding would exist in ways I never imagined possible.What is a day in our lives like, with Samantha, born nearly 8 years ago with a diagnosis of Down syndrome?I can't speak for Samantha, and will let her do that herself one day.  But I can tell you that a day in our lives is nothing like I ever thought it could be, once those fatefully inextricable words wove themselves into our world.I will start with what our days are not.Our days are not sorrow and pain, a forever-child grasping blindly at my sleeve or the hem of my skirt, stumbling along.  Our days are not platitudes and I'm sorry's, the pained smiles of those that would humor you, betrayed by the pure pity so obvious behind their eyes.  Our days are not a disinterested creature tagging two paces behind me, unaware, without friends, without education, without socialization, unable to be a functioning member of society.Ordinary.::We wake.  She eats her breakfast and gets ready for school, getting dressed, using the toilet, brushing her teeth, washing her face, being silly like most 7 year olds, watching TV and working the remote like a pro to find what she wants on the DVR or On-Demand.  She tries to sneak in a few books to read before I yell for her to hurry up and get downstairs to get her shoes on.  She tells me to relax, she's on her way.  We go to school, where I leave her in the entryway and watch her head down the hall to her 2nd grade class, stopping to chat with each teacher and child along the way.  She gets home, bubbling with excitement to tell about her day and get started on her homework.::::The everyday with Down syndrome is trips to the library for a new haul of 20 books, playdates with friends, leaning out of the open back window to greet and converse with the people in the car next to us at a stop light, bedtime stories, ice cream parlors, travel to both foreign lands and domestic destinations, answering the phone, piggy back rides, nail polish and setting the table, writing love notes to Mommy and Daddy on notebook paper, to name but a few.::::Our days are filled with I love you's and kisses, with laughter and an insatiably devilish sense of humor.  With spontaneous hugs, knock knock jokes and questions.  With hide and seek, playing doctor and cell phone apps.::Extraordinary.::Our world has changed.  In the most amazing ways.  We have joined a [...]

Sharing on World Down Syndrome Day


March 21st is appropriately named as World Down Syndrome Day.  I'll break down the significance for you - 3/21.  Three copies of the twenty-first chromosome that reside in each of our children's genes, as opposed to the two copies found in the typically-developing population. 

It is a day observed around the world, to celebrate our loved ones with "designer genes" and to raise awareness of the condition that plays host to many developmental and intellectual delays. 

It is a day when we want to bring our children into the spotlight and show that they are people first, sons, daughters, friends, nieces, nephews, aunts and uncles.  That they are loved.  That they are valued

It's a day for education, to teach others about what Down syndrome is, what it means, how it affects those that have it. 

A year or so ago, the Down Syndrome Guild of Greater Kansas City came out with this amazing video, a teaching tool that is aimed towards students to help them better understand and appreciate their classmates with Down syndrome.  Samantha's teacher showed it to her class earlier in the school year during the time they were discussing diversity.  I bought a copy of the DVD to donate to her school, asking if they would consider showing it to the entire student population this Friday, World Down Syndrome Day.  Her principal said they would.  It will be shown in each individual classroom via smartboards that morning, and the teachers have been asked to speak to their students about it afterwards, to invite open discussion.  I give many sincere thank yous to DTES for this - I feel very fortunate for the support of the administration and staff.

While Samantha is only the 2nd student with Down syndrome to pass through those halls in the 17+ years of the school's existence (the other was in the first few years), I'm sure she won't be the last.  And, as the student population begins their gradual ascent to Middle School, I hope they will take the lessons of understanding, inclusion, patience and acceptance with them, I hope that they will apply it to anyone they may meet in their futures who may be a little different, not just those with Down syndrome.  I hope they will share the message, pass it along and enlighten others along the way. 

I share my girl with them. 

They share her message.