Friday, April 11, 2014

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 intellectual disability with the cards already stacked against her, who cannot be relied upon to pass the message, then someone needs to damn well make sure that message is passed.

I can only hope that Samantha still has a great day.  She was so proud of her hair this morning, and I hate that someone's going to rain on her parade.  I can only hope that she and her friends can laugh it off, that she'll willingly put the hat on, and the day will proceed as normal, that the damage hadn't already been done before the hat could be brought to her once the starting bell rang. 

I wish I could have hugged and kissed my baby girl goodbye this morning.

I'll make up for it when I get home. 

Thursday, March 27, 2014

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. 

Ugh, that one makes me all teary-eyed. 

THIS, folks, is what it's all about. 

On a slightly more disconcerting note, and one that I believe to be more typical to occur out there, a Facebook friend recounted the other day a situation she'd just experienced where a classmate of her daughter with Ds told her and his mother that her daughter had been trying on his coat that day.  His mother said, "That's okay!" and he said, "No, it's not - she probably got Down syndrome all over it!." 

The mother of the boy was suitably horrified.  She told him they'd discuss it in the car, and they marched out quickly. 

As painful as that situation was for everyone, as hard as it is to read, and as awful as it had to be to hear in person, I suspect that the boy was, in turn, given some very valuable information by his mother, that she would have seized the teachable moment to impart one of those red-cheeked, shame-inducing lessons that he'll carry with him going forward.

Shame is not a bad thing (Dictionary.com defines it as "the painful feeling arising from the consciousness of something dishonorable, improper, ridiculous, etc., done by oneself or another."  Psychiatrist Judith Lewis Herman states that "Shame is an acutely self-conscious state in which the self is 'split,' imagining the self in the eyes of the other.").  It builds our character, and makes us better people for being able to recognize our unintentional foibles.  We realize our mistakes, and vow never to make them again.

Lessons learned.

Teach, don't blame.

Be firm, but be gentle.

They are not aware that they'd done or said anything wrong.

Teach.

Seize the moments when they happen.  Don't let them pass you by.  I promise you, they will not be forgotten, and they will make a difference.

Wednesday, March 26, 2014

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. 

Friday, March 21, 2014

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 club we never knew we wanted to join, have met incredible people from all walks of life who share something with us, have learned more than we ever thought we'd learn, have discovered a cause and a calling in the form of a little girl who has made us into accidental advocates.::

::Every day is sharing, celebrating, reaching out to others, bragging, feeling a part of something so much bigger than ourselves, feeling so, so fortunate for this new and different and fulfilling life we've been handed.::


 
Our eyes have been opened.



Life is good.

Life is better than good.

We are complete.




Happy World Down Syndrome Day! 



Wednesday, March 19, 2014

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.

Tuesday, March 18, 2014

A Day in the Life...With Down Syndrome


 

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 club we never knew we wanted to join, have met incredible people from all walks of life who share something with us, have learned more than we ever thought we'd learn, have discovered a cause and a calling in the form of a little girl who has made us into accidental advocates.::

::Every day is sharing, celebrating, reaching out to others, bragging, feeling a part of something so much bigger than ourselves, feeling so, so fortunate for this new and different and fulfilling life we've been handed.::


 
Our eyes have been opened.



Life is good.

Life is better than good.

We are complete.








Wednesday, March 12, 2014

We've Been Back HOW Long??

I can't believe it's been more than 2 months already.  I deliberately kept our trip relatively quiet beforehand this time, knowing that people can be targeted by thieves and scammers when they plaster their travel plans all over the internet and beyond.  I've done it in the past, though, since really, we have nothing worth stealing.  I suppose if someone was really cold and hungry they'd find a decent squat, but beyond that...nope, not much. 

Flat Stanley, notoriously slick 2nd grade stowaway, made an excellent travelling companion and eluded the authorities yet again..

We flew to England for Christmas, to spend time with Steve's family.  We stayed, for the most part, with his sister in his home town, and drove all over kingdom come to visit other relatives.  It was a bit of a whirlwind trip, but we had a really great time.  Starting off with a night at a Heathrow Airport hotel due to our late arrival, his sister picked us up first thing in the morning, Christmas Eve and drove us to her place, a spacious townhouse in a quiet community.  Samantha was excited by both the presence of Auntie Caz's cute little dog and the close proximity of a playground to the house.



On Boxing Day (that's the day after Christmas to those of you not in-the-know...), we drove up to Wolverhampton so Steve and his brother could attend a Wolves (Wolverhampton Wanderers) game.  We walked around the town and did a little bit of shopping while we waited.  The next day, Friday, we drove to York, one of my favorite cities in the UK.  An ancient walled city built up by the Romans, much original architecture still stands strong, and all of its beauty and history is spread out and ready to dazzle and teach its visitors.

She's IS dazzled - really!  Faking irritation, followed immediately by a cheeky smile. 


York Minster (Cathedral), current design circa 1220, tucked behind it all.






Not a real cat, not a real pigeon.

In London we revisited old haunts, and introduced some of them to Samantha.  Soho was our old
stomping ground, and Steve was thrilled that Bar Bruno was still around, still in the same family as it was over 20 years ago when he frequented the little cafe for breakfasts and lunches while living and working in the pub across the street.



 

I didn't actually get to shop at all for myself.  Not possible with a 7 year old who hates shopping.  I did get about an hour and a half in London on my own when Steve took her back to the hotel to rest, but if any of you are familiar with both the Piccadilly and Mayfair sections of the City, you won't be surprised to hear that in that time I came away with only a tourist t-shirt for Samantha from one of the hundreds of tourist trap shops in Piccadilly Circus and two (on-sale) musical wind-up tins of biscuits (that's cookies to you) from Fortnam and Mason (which deserves a link here to its Wiki page, detailing it's long and prestigious history).  Sadly, Rolex, Charles Tyrwhitt, Prada, Gucci, Bugatti and Stella McCartney were not in my budget this trip.

 


Photos were also a bit scarce on this trip.  I got a few, but England is so far north of our own habitat here in the States, that it's easy to forget that the summer days are longer (I remember, years ago, going out to clubs just as the last rays of the sun had set, near 10pm, and walking home in the wee hours of the morning as they began to rise and paint the sky pink again) and the hours of the average winter day are painfully short.  We slept uncharacteristically late each morning, as the sky remained dark until nearly 8am, and no sooner had Samantha asked if the sun was coming up, than she'd be asking if it was going down again, those late afternoon tinges of orange visible as early as 2pm, the dusk arriving by 4.  And we were on the go for most of the trip, making the stop to take photos one of the last things on my mind. 


So I had thought that in England, at least, people would all wear their Christmas cracker hats, but it seems that even there, in the land of Christmas crackers, people grumble and resist the idea of putting the little paper crowns on their heads during dinner. At least I held up my part, although Samantha's lasted for about as long as it took to snap this photo. *sigh*