The Race 4 Respect

You may or may not have noticed the new item in my sidebar.  If you have not yet noticed it, go take a look now...I'll wait! 

Done?  Good.

This button means an awful lot to me.  Like, a lot. 

First, it's my very first race!  I'm so excited about it, and am really proud that I'm able to do this.  I started running back in November on my treadmill, and love every minute of it.  I don't run for speed and am not at this point interested in my time, but I do have goals.  My goals are for endurance, health, stamina, and to get into a normal bathing suit this summer, rather than the wet-suit-dress monstrosity I suck myself into each summer.  I've always been slim, so I'm horribly self-conscious of any extra bulges my sedentary lifestyle has so generously provided over the last several years.  I run about 2 miles a day now, with 3 or 4 when I have the time, but have not yet run outside.  Gotta get that nipped in the bud asap...well, as soon as the weather gets a little nicer, anyway.

Second, it's going to be downtown DC.  The view is unparalleled.  It feels like an honor to be able to participate in an event there.

Third, and most importantly, it's for a cause I hold near and dear to my heart - the money raised in this race benefits 5 local Down syndrome charities, our very own DSANV included.  I've signed Samantha up for the kid's fun run, although I'm not sure if she'll want to do it on the day.  I'm trying to really talk it up with her now, and there will be a running buddy assigned to her.

When I signed up for the race, I couldn't figure out how to create a team.  So I'm just an individual runner, but have several friends from work who are signing up, too, to run with me, although as individual runners, too.  I can't tell you how much that means to me, that they'll be there - spreading the word, creating awareness of an important cause, supporting me and Samantha - this is huge. 

In the meantime, I'm not so good at fund raising.  I don't like to ask people for money, especially when the Buddy Walk is right around the corner.  But if you would like to donate, please click the button in my sidebar, or click here, and if you'd like to register to run, click here (first 1,000 registrants will be entered into a drawing for a mini iPad!). 

Everyone deserves respect.

For Eyes

Well, it's that time. 

After visiting the eye doctor faithfully each year from the time Samantha was 12 months old, after being told that she had an astigmatism and would eventually need glasses, it's now time. 

The doctor has now declared that Sammi's eyes aren't bad, but because she's such an avid reader, now is a good time to take some of the pressure off of her eyes and get her glasses.  She'd wear them when she's reading and when she's in class, to look at the board or do projects, etc.  She doesn't need them in the hallways, at gym, or on the playground - just when she's concentrating, visually. 

The Wiki link to astigmatism is absolutely no help.  I think it may have confused me more than I was to begin with, but I think the gist of it is that because of the shape of her eye, she could have difficulty seeing close and also far...?  Does that make sense? 

Nah, not to me, either.

But I will say this, Samantha was awesome at the eye doctor when Steve took her last week.  She let her put the drops in, was patient while she waited, didn't freak out at the blurriness (and told me, when I got home, that her eyes were "a little bit blurry."), and asked if she could get glasses.  She's totally in to the idea! 

You know what she balked at?  The idea that she'd have to wear them on a necklace around her neck so she won't lose them.  My kid hates jewelry. But I'm sure she'll get over it.

And I'm sure they'll be adorable.  :-)

Affirmations of Friendship

I worry about the quality and validity of friendships for Samantha.  A part of me still expects that she'll have the typical friendships with her typical peers that they have amongst themselves, but the reasonable, rational side of me knows that the older she gets, the less realistic that vision can be.  All you folks out there who think otherwise and think I'm selling my kid with an intellectual disability short?  Well, I'm just willing to bet that you have children who are considerably younger than Sammi, who have not yet hit that concrete dividing line between the conversations and activities shared by those typical peers and the conversations and activities that my daughter is involved in.  There's a world of difference. 

At this point, Samantha is mostly unaffected by it.  Her self-awareness is growing, but she's still young and immature enough to not really notice it too much.  Or, if she does, she does a good job of hiding it.  Sometimes I can see a slight, subtle shift in her posture, a shadow that floats unsteadily behind her eyes, an extra intensity to the anxious, habitual finger crossing that replaced the hair-twirling some months back, all betraying her true feelings of insecurity when I ask her about her activities with her friends at school.

And so I worry.

It's my job.

And, just when I'm about to read so much more into something that may be nothing, I find affirmations in the writings of her classmates that tell me otherwise.  Obligatory though they may be, a genuine sentiment hovers around them, moving between the words and sentences like a shimmery ribbon of peace and love.  A whispering, glowing halo that blinds me and brings tears to my eyes with its beauty.

Her beauty.

And before I get crushed beneath an even greater tangle of flowery metaphor than I've already woven, I should explain.

Samantha was recently the Star Student of the Week.  Sure, it's pre-determined which student will have the honor each week throughout the school year, but it's a nice opportunity for the children to learn a bit more about each other, to see what kinds of things are important to each other, and to ask questions.  And while Samantha refused to participate (she claims she was too shy), her teacher picked up the slack, fashioned her own hair into braids, and stood at the front of the class to present as Samantha's proxy, with a little help from Sammi's aide, who knows Samantha better than pretty much anyone there.  And afterwards, each student wrote a letter to Samantha, bound into a sturdy booklet to be treasured forever, a book that Samantha reads every day.

The letters, while they followed a general format ("Dear Sammi, You are an awesome Star Student because..."), and while they mentioned something that they had learned about her during the presentation ("I like cats, too...I like to read Fancy Nancy, too...etc."), some of them really dug deeper, expressing real interest, real caring, real friendship.

"You are my best, best friend.  Can we have a playdate soon?" 

"You are so nice.  I'm glad we are friends."

They didn't have to write those things. 

They wrote them because they wanted to.

I credit the fact that the school allowed the showing of the Down Syndrome Guild of Greater Kansas City's amazing video, Just Like You (which makes me cry every time I watch it, btw) to her class during lessons on diversity last fall with the way her classmates have embraced her.  I think that clarity in understanding a little more about Down syndrome and how it shapes Samantha has, in turn, shaped them.  I'm still pushing to have it shown to the whole school some time soon - I'll be recommending March 21st, World Down Syndrome Day.  I would take great comfort in knowing that a larger population of students than just her current class would also discover that clarity and carry it with them into the world.

A world that, day by day, hugs my daughter tighter, and accepts her for who she is.

On *Her* Terms

I've said it before, and I'll say it again until the day I die:  it is not an incorrect stereotype to say that the extra chromosome in Down syndrome comes with a very distinct stubborn gene. 

Sure, sure, when I've been bold enough to say ((gasp)) stubborn and not a stereotype in the same sentence I've received plenty of flack.  And what I have to say about that?

pffffffft

What. Ever.

Samantha is stubborn as all get-out.  Certainly not all of it comes from Down syndrome, and certainly at least some of it comes from Only Child syndrome, from which she never has to share her stuff, never has to compromise on an activity, never has to do things on other people's terms.  Well, except for Mommy's and Daddy's.  But that's different.  And that's not guaranteeing she'll even do that. 

Along with her extra chromosome and her innate stubbornness, she also has a fair amount of OCD (Obsessive Compulsive Disorder).  It's nothing terrible, and doesn't generally get in the way of things, but it's something we try and try to teach her to push past.  We pick our battles, though - if she wants her juice cup to be sitting in a particular place on the table, so be it.  If she insists on closing the bathroom/bedroom/whatever door behind her, as she always has done, it can be problematic, especially when there's a cat inside... 

When it comes to playing with friends or classmates, it comes out as being supremely bossy. 

She wants to play/do what she wants to play/do, the way she wants to play/do it.  There is no room for compromise, and when met with the resistance of the other party, results in stomping/pouting/growling.  Sure, all kids are like this at some point, but usually this complete unwillingness/inability to compromise is outgrown by now.  So I blame the chromosome.

It also results in her having to play alone, and side by side instead of with another child.  Not all the time, but often enough that it frustrates not only us, not only the other child, but likely even her.  She can't help it.  And, deep down, I think it bothers her.

Everything has to be on her terms.

All or nothing.

And, when it comes to her auditory sensitivities, most strangely, it's also on her terms.  This one makes no sense, and leads me to believe that stubbornness fuels much of it, far more so than an actual sensory issue.

For example, Samantha, as a baby and young child, was legitimately startled to tears by sudden loud or shrill laughter nearby.  She would cry when another baby or child was crying, the sound seeming to hurt her ears.  Then and now, she will seemingly feel real pain when within earshot of a voice on a microphone or loudspeaker, its shrillness piercing her skull as she scrambles to cover her ears and put her head down to muffle the sound. 

But let's look at these examples:

a) At a child's birthday party in someone's home - decibel levels are high, as the sounds bounce within an enclosed space.  She's bothered by it, but can handle it.  Until a child picks up a party whistle and starts marching around the house blowing it.  Sammi covers her ears, and cries, screaming for him to stop, and I have to pull her outside to get her to calm down.  Once we re-enter, and she sees that the child has put the whistle down, she can relax.  A short time later, she finds another whistle and begins blowing it mercilessly, as loud if not louder than the other child had.  She laughs, enjoying herself.

b) At an outdoor event, the music is loud through the large speakers on the grass.  She stays well clear of them, covering her ears and looking pained as we move past quickly.  At another outdoor event, the music just as loud as it had been the previous time, she hears the sound from a distance, and gravitates towards it like a moth to a flame, getting closer and closer, excited, ready to dance.  She positions herself right in front of the speakers, and dances until it's time to go.

I just don't know.  It makes planning very difficult, as we will never know, in advance, whether or not something will affect her, or what will trigger a negative reaction.  I carry her headphones around with us in those instances, ready to pop them onto her head at a moment's notice, if necessary.

Stubborn?  Oh, yes.  Willing?  Most definitely, if it's on her terms.  Random?  Heck yeah. 

But we're learning to cope, and it doesn't rule us. 

The First Sleepover

Sleepovers...

A right of passage for most children, usually starting with spending the night with cousins or the children of family friends, but then evolving into the more serious, committment-heavy extensions tacked on to successful playdates.

Samantha has not had cousins to grow up with, and we have never spent the night with far-off friends who had children still at home.  I have only recently gotten brave enough to venture into the playdate-with-a-typically-developing-friend world, crossing my fingers that perhaps it could develop into a relationship that could sustain an overnight adventure.  I've certainly talked about sleepovers with some of Sammi's friends with Down syndrome, but in the interest of parental peace of mind, that kind of sleepover would require the parent to stay, too.  Not a problem, but it requires a bit of logistical dexterity on the part of our house and its sleeping arrangements.  So those get pushed back and back.  And Sammi asks, nearly every day, if she can have a sleepover with one of her friends.  It's so hard to keep saying, "We'll see..."

But that typical playdate seeking an extension by all parties has finally developed, and on Saturday night we played host to one of Samantha's classmates, who happens to live only about a block away. 

And the girls had a great time.

They watched TV, ate dinner, read books, drew/painted pictures, and giggled and chatted after lights out, hopping from sleeping bag-covered floor to bed and back again until, with both girls tucked into Sammi's twin bed, we decided 10pm was late enough and put on the breaks.

We weren't worried about having another child in the house.  I was more worried about whether or not that child would have a good time, or if she would be bored with Samantha, disillusioned, so to speak.  Not like she doesn't see her each and every day at school, and not like they haven't had playdates before, but overnight is a long time. 

The worry was for nothing, though.  After the little girl spent a good, long time drawing a picture, she presented it to Samantha as a surprise.  It was beautiful.  A full-color drawing of her and Sammi, holding hands and playing together. 

She announced, beaming, exuberant, excited and speaking very quickly, "I like to draw pictures for my best friends.  And Sammi is definitely one of them, and I have a *lot!*  I mean, a LOT of best friends!" 

At that, we had to laugh.  Maybe one day she'll realize the back-handed compliment she'd just paid.  But we knew what she meant, and it was definitely not to say that Sammi was just a small fish in a huge sea of BFFs in this girl's life...it was to say she really valued Samantha, enjoyed her company, and saw her as a best friend.  Among many.  LOL

Before the girls went to bed, Sammi's friend called her parents to say goodnight.  I heard her telling her mom what a "blast" they were having, and that she was having the best time.  In the morning, after a trip to IHOP for breakfast, after I said we'd need to pack up her things and walk her home, she was sad, saying she wanted to stay longer, to keep playing with Samantha.  Sammi was sad, too. 

And, while I made all the right sad faces in commiseration of the plight of the two little friends, my insides were grinning, each fiber within me jumping up and down with joy, that the first sleepover, the ultimate validation of childhood friendship, had so successfully come to fruition.

Plans are being made for Samantha to spend the night at her house one day.  Not quite sure she's ready, or perhaps it's we who are not quite ready, but we'll see...

Communication Breakdown

I'm going to go out on a limb here. 

I'm going to talk about school.

Which I never do. 

Well, never about concerns with school.

Something about this school year is different.  Actually, lots of things about this school year are different, including new leadership and new teachers.

But something else has changed. 

Communication.

I see posts all the time on Facebook and on blogs where people discuss the recommendations for good, clear, concise communication between parents and the child's teachers.  When you have a child with an intellectual disability who is unable to reliably discuss her day, having that window in to her day through her teachers is the only way we, as her parents, can feel comfortable and informed. 

For the last few years, ie. Kindergarten and 1st grade, we had a notebook which traveled back and forth to school in Samantha's backpack.  It was a 2-way communication vehicle, by which her long-time aide would recount triumphs and concerns and we could either rejoice with Sammi to reinforce her accomplishments, or have appropriate conversations with her to discuss any negative behaviors.  Also, for the last few years, ie. Kindergarten and 1st grade, we were able to walk her to and from class each day, thus able to observe her interactions with her peers and with her teacher, and have a few short words with the teacher and her aide, in passing.  It doesn't sound like much, but trust me, when you have that, there's a certain sense of reassurance you feel, knowing that your child is smiling as she goes into the room, knowing that the other children are smiling at her, greeting her, the teacher welcoming her.

But this year, the hatches have been battened down, eliminating that face-to-face from the walk to or from class, and the notebook is no more.

I get the new rule about parents not walking through the school - it created a fair amount of chaos, and is far more secure for our children this way.  The teachers and administrators have better knowledge of where each child is.  I get it.  But for a child with an intellectual disability, I think there should be some leeway.  Other kids can come home and tell their parents everything.  Ours can't.

And I don't get the notebook.

We had one at the beginning of the year, and it was, as before, a huge help in our understanding of Samantha's day.  But it was taken from us after a note written home contained some questionable references (nothing terrible, just a situation that was unclear that we requested clarification for), and suddenly the rug got pulled out, the notebook taken, and the promise of a better, more clear method of communication to be substituted.

That better, more clear method of communication turned out to be a few short, scrawly notes on the already pre-existing behavior chart that came home daily anyway. 

Less information.

Less detail.

About as clear as mud.

Let's just say that the communication we now receive, this better, more clear, method of communication, is sporadic, inconsistent in its messaging (don't put a happy sticker on the PE box and then write a note that says she wouldn't participate - what does that mean?), and, frankly, opaque.

And Samantha has been showing increasing resistance to things school-related.  Participation, which had been worked on so hard all through Kindy and 1st, which had been written into her IEP and then not included with as much import on the most recent iteration because she had essentially mastered that hurdle, is now non-existent, from what we can tell.  But who knows?  All I know is that Sammi has refused, on numerous occasions, to get in front of the class to present her projects, something she was excited and proud to do last year. 

She's been coming home talking about how her friends don't like her.  How they're allergic to her.  How someone has made her unhappy, but she refuses to elaborate.  I am pretty sure she's not playing with other kids on the playground.  How do I know?  She told me last night that she wants to be left alone, prefers to play by herself, doesn't want to play with the other kids.  At the playground on Sunday, one of her friends was out there with several other kids, and suggested a game of tag.  He asked Samantha to join them, but she dug her heels in and refused, despite his and my best efforts. 

This is really unlike her, or unlike what she would have done in the past. 

She's an only child - her interactions at school are critical to teaching her to function in society, to gain the confidence to participate in activities and social functions, in a job.

Is no one encouraging her or the other children to play together?  Is no one seeing her isolate herself?  Are other children saying mean things to her?  Does she have a problem with a teacher?

If not, we don't know about it.

Is she actually participating and having a great time, behaving appropriately, learning, feeling supported?  Is she just making some of this up (totally possible)? 

If she is, we sure don't know about it. 

Something has to give.

We can't live in the dark like this, and not know what's going on with our child.  She's so bright and has such a promising future, but in my mind, we're in a one step forward, two steps back cycle right now. 

I hope someone can prove me wrong.

I am pretty sure someone from her school will read this, and that's fine.  I haven't said anything bad.  I just feel that there's something here that is broken and needs to be fixed.  I'm just trying to figure out if we should call a meeting now, or just wait until her IEP meeting which will be some time in the next two months.  On Monday, I will put a fresh notebook in her backpack with a note requesting its use. 

We'll see...