Thursday, November 21, 2013

When I Write

I had to make a bit of a sacrifice recently.  Nothing terrible, but it has affected my ability to blog.  I love blogging, don't get me wrong, but I'm primarily only able to write when I'm on my own in the mornings after dropping Samantha off at school, in that super-short window of opportunity while eating breakfast before having to rush off to get ready for work (which I end up late for anyway).  But 2 weeks ago, I came into possession of an item I've been longing for for a few years now.  Something that I'm hoping will open new doors, improve my life, and allow me to resurrect an old wardrobe that no longer fits my expanding middle. 

Wait for it...

(Hear the angels singing?...ahhhhhhhhhh...)

A treadmill.

2 years ago, I was getting up 3 days a week at 4:45am, going to the gym down the road, running on the treadmill for 20 minutes, and then rushing home again.  The clock-change that fall affected Samantha pretty hard, and she started waking far too early.  I needed to be home to run interference so she didn't wake Steve too early, or so I could direct her back to bed for another precious hour of needed sleep.  Then, once she'd completed that stage, Steve's job changed, and he needed to be up early for work and to leave before I would have gotten home from the gym.  Besides, I'd lost my motivation by that point.  I still wanted to do it, but I no longer wanted to get up so early, or to brave the elements outside, including a really cold car that wouldn't have time to warm up.

So, it just so happened, two days before our 22nd wedding anniversary, a friend posted that she was selling her treadmill. 

I was so excited!  I jumped on it immediately, but knew I'd have to check it with Steve, to be sure he wasn't going to freak out about the amount of space it would take up in our already-crammed basement.  When I asked him, he was oddly silent for a few moments.  Then he stated, grinning, that he had been contemplating getting me one for our anniversary anyway!  So, without the expense of a brand new treadmill, I obtained an awesome, fancy one from a trusted source, and it is now camped out directly in front of the big screen TV in the nice, cool bottom level of the house. 

And that, my friends (who may or may not be snoring at this point in my narrative), is why I am not likely to be blogging in the mornings anymore. 

Sadly, my time on the machine is still pretty limited.  I can get to 1 1/2 miles within my allotted time frame (still late to work, mind you...), but know I could do far more, as I'm still feeling pretty awesome at that point.  But I'll get there.  I'll make it happen, one way or another.  And my goal?

To run a 5k this spring.  Not competitively, of course, but just to say I did it. 

So, while I will blog when and where I can, I have a new love in my life, and it's making me far healthier than sitting on my butt, eating a bowl of cereal far bigger than the serving size stated on the side of the box, trying desperately to think of something worth writing about.  Hopefully I can find inspiration while running, during the commercials while watching the last 20-something DVR'd episodes of Breaking Bad.  Oh, who am I kidding?  I fast-forward the commercials. 

Guess inspiration will have to find me.

Thursday, November 14, 2013

Self-Talk and the Battle of Wills

Samantha and I had a major battle of wills this morning over her clothes.

I'm actually one of those really lucky parents whose kid really doesn't care all that much what I put on her.  I think that's because, for the most part, barring the discomfort of a stiff fabric or of something slightly too small, she likes what I put on her.  I'm not tooting my own horn here, but I will say, she pretty much basks in the accolades she receives every day at school and from her sitter when she gets home in the afternoons.  Oh, and from complete strangers on the street/in the store/at the playground/etc. 

Happy to be of service to your healthy, growing ego, darling.  :-)

But one thing she will. not. tolerate. is changing what's already on her.  If I'm going to have her put something on, I darned-well better be absolutely sure it's what I want on her.  It had better match/fit/be appropriate and I had better be happy with it, or all hell breaks loose if I tell her something's gotta change. 

Which is what happened this morning.

That cute little Oilily jumper that I got for a song from consignment?  I've been having her wear it with stripey tights.  But this morning, as I watched her walk up the stairs to go brush her teeth after breakfast, I realized just how short, like inappropriately short, it actually is, and how awkward it probably has been the last two times she's worn it and had to go on the playground during recess. 


So, new-found realization in mind, I told her she had to either put a pair of bike shorts on over top of the tights, or she had to put a pair of leggings on underneath instead.  She crossed her arms, pouted and shouted, "No!"  Of course she did. 

And, with my eye firmly on the ticking clock, the minute hand edging ever closer to the moment when we had to be out the door to get her to school and get me back home and on the treadmill before having to get ready for work, I made a decision.  Leggings. 

But she wanted none of it.  She refused to get up from her seat on the toilet lid.  Growing increasingly angry at my increasing desperation, she head-butted me (not on purpose, she just clenches up and moves sharply and suddenly when she's mad, but I happened to be a little too close, trying to force her to take her tights off).  I yelled.  And I think she felt bad, but pride wouldn't allow her to admit it.  She loosened up a bit, began to cry, hugged me, and then let me change her tights to leggings.  And then she took her place back on the toilet lid, refusing to wash her hands, brush her teeth, or wash her face. 

Have you ever heard of self-talk?  It's something people with Down syndrome commonly do.  They talk to themselves, rationalizing something they need to do or something they're feeling.  It helps to organize their thoughts and feelings, helps them to make the decisions they know, deep down, are right. 

Given that Samantha pretty much never stops talking, generally, I have had to listen a bit more closely recently to realize that she actually does engage in self-talk.  And, in the case of this morning's battle, I knew that if I left the bathroom and left her alone, she would work out what she needed to do, and would likely do it. 

I walked out, closed the door, and waited, listening.  At first there was only silence.  Then I heard her rustling as she stood up from her perch, then whispering something to herself about washing her hands, brushing her teeth, washing her face.  And then...magic.  The sound of running water.

I went downstairs.  A few minutes later, she joined me, clean and glowing, a smile on her face, ready for the short walk to school. 


Tuesday, November 12, 2013

Power to the People

The people have been heard! 

Sometimes something comes along or someone does something that you just roll your eyes at and say, "really?"  And sometimes that's all that's warranted - a non-committal response, a reaction of indredulity and mild annoyance, and something to file away in the back of your mind for later, if need be.  It could take the form of an off-color joke, or, perhaps, an insensitive remark by a well-meaning friend or relative (just using this as an example, relatives!  I don't think any of you have *ever* been insensitive, honest!). 

Sometimes something comes along or someone does something that requires action.  Something that isn't necessarily perceived as offensive to the majority, but something that requires the people of the minority to step in and be heard, to teach a lesson to that majority and bring them into the fold of understanding and sensitivity to the feelings of others.  The battle between team owner, Dan Snyder, and countless native tribes across the Americas over the name of the football team, the Washington Redskins, for example.  I'm not writing today to debate this particular topic, but let me just say, if it's offensive to someone, if it *hurts* an entire population of people and perpetuates negative stereotypes, DON'T DO IT

Same thing for the "r-word."  You know the word, the one that people throw around and think is funny, something to laugh at, a pejorative word of ridicule, and disdain.  A word people use without even thinking when joking with their friends, calling them retards for, perhaps, something silly they've done, or for not understanding something, or for no reason at all. 

I've written about the "r-word" (it doesn't deserve the capital letter at the beginning that so many people give it - it will always be fully-lower-case to me) many times before.  So have countless others.  And while I'm not one to call everyone out on it every time I hear it thrown around in conversation, I am one to bring it to attention when the situation warrants it.  There's a time and a place...

Now, this is not new news, and you've probably read about it over the past few days, but there was no time or place better than last week's revelation that Kat Von D, tattoo artist, TV personality and beauty line creator, had come out with a new lipstick color called Celebutard


Completely uncalled for.  And completely offensive.  And something had to be done.

Some may say, oh, whatever...the r-word/football team name/whateverisbeingscrutinizednow was just *fine* back in the day when it was a medical term/a newly-created team...what's all the fuss now?

Right.  It was "fine" with the majority.  It was "fine" before the collective consciousness of these disregarded and undervalued people/groups were realized, before these disregarded and undervalued members of society found their voices and begged to be heard. 

And now they're being heard.

Dave Hingsburger, upon learning of the offensively-titled lipstick, created his first petition, and, as they say, the rest is history.  After a whirlwind flurry on Facebook and other social media sites, retailers, such as JC Penny and Sephora, reacted quickly, pulling the product from their shelves and websites and issuing apologies.  I thought I'd read that Kat Von D was going to change the name, but now I can't find any reference to that.  Maybe I just dreamed it...  

The whole drama, from start to finish, was so fast that if you blinked, you likely missed it.  It was a true marvel, and one that I hope to see play out with similar success more and more, but to be needed less and less as high-profile people and companies, leading by example to the masses, start to check their words and think before using a word, about whether or not it would have harmful connotations.  Think about whether it would be hurtful to someone, even just one person.

The people have spoken, their voices heard, their power gaining strength.

My daughter is worth the fight.

Friday, November 8, 2013

Sad Face, Happy Face

I've been a little lazy with my camera lately.  Well, lazy isn't really the right word, since I've just not had any time.  I mean, look at my blog, for goodness sake, I post rarely, and what I do post has been pretty lackluster over the last few months.  Life is ordinary, life is good, Sammi is happy and learning lots at school, her language is exploding in ways we never thought we'd see, and I often just don't have anything to say.  I just go with the flow of things. 

I'm determined to make a bit more of an effort to get the camera out and about, but even if I get some great shots, I don't have much time to edit.  And seriously, I could post basic straight-out-of-camera (SOOC) snaps, or I could wait until I have time to make them actually glow, and it's worth waiting for, trust me. 

When did life become so busy?

Thursday, November 7, 2013

The Aaaays to the Queues, Part II

At long last, here's part II of my Q&A.  Due to my inherent long-windedness, I have had to break this into yet another part, which I will post some time next week. 

Q.  What kinds of challenges did you guys face when Sammi was a newborn? Any feeding issues or health problems?

A. Samantha was born with a complete AV canal defect of her heart, which meant she needed to have open heart surgery at 4 months old.  As a result, she was a very, very sleepy baby, and that made feeding quite difficult.  We had to try every trick in the book to keep her awake for feedings, and we were obsessive about her weight gain.  We tried flicking her heels, using cold wet washcloths, etc. We were persistent, and while it seemed like torture (hers) and that every waking hour (ours) was spent trying to get her to feed, it paid off and she gained weight very well.  She never went into actual heart failure, and her surgery went pretty smoothly.  We had to go home from the hospital with oxygen for a few weeks, but that was the only issue. 

She had some sort of reflux from her earliest days through age 2.  Every meal came back up if she was not kept vertical and still for at least a half an hour afterwards.  She didn't have any discomfort or pain around this, so we never treated it with anything but patience. 

Other feeding issues were that Samantha wouldn't chew her food as she began to take in solids.  She'd try to swallow her food whole, then choke, so we kept her on Stage 2 baby foods and formula for the most part, along with foods that were cut into teeny, tiny bits, until she was 2 years old when things seemed to resolve themselves.  Coincidentally (perhaps), that was also the exact time that her reflux stopped, likely due to the change in diet as well as her newly-vertical stance (she began walking at 21 months).

Q.  When you sign Sammi up for extra curricular activities (at the library for example) do you do so based on her chronological age so she could be with her peers or her developmental age so her abilities would be similar to the other kids?

A.  Great question!  We didn't do the library-group thing, or any group things, for quite some time - she had some sensory issues around group activities, and would balk at them.  However, in the last 2 years, I have signed her up for Challenger baseball and TOPSoccer, both designed for children with special needs.  I would never dream of putting her into a group of her same-age peers at this point, to be honest.  I'd rather she not get frustrated and shut down, and rather, at least at this point, she not get bogged down by rules and regs.  I prefer that things are introduced to her as fun, and give her the gentle push she needs to learn.  I'm not sure how things will work as she grows up, yet.  Have to take each day as it comes.   

Q.  Today what scares you more and why - that Sammi will be able and want to live indepently or that she will really live with you into adulthood?

A.  Oh, wow...  Let's just say that I fully believe that Sammi will be able to live independently.  Let's also just say that I truly can't imagine not having her by my side and don't want her to go.  Maybe she can live next door...  :-)

Q.  I'd love to hear what you think about intellectual disability - how is it the same as what you thought upon diagnosis and how is it different?

A.  Hmmm...intellectual disability was kind of terrifying to me long before Sammi's birth and diagnosis.  I think we all shy away from things that we don't understand, and that's exactly where I was.  However, I also always innately knew that people with ID are still people, still have feelings, still need care, love and attention.  I managed a children's clothing store for 3 years, several years before I had Sammi.  I loved the job, and loved the children who came in as well as (most of) their parents.  One mom, in particular, always came in to buy for her 5 year old daughter who she said had a disability.  The love this mother felt for her daughter, who I had not yet met, was so obvious in how she spoke of her, in the care she took selecting her clothes, in the money spent (that store was not cheap...).  I loved helping her find things I thought would work well for the little girl's hard-to-fit body, and I think my heart just about burst on the day that she actually brought her into the store.  I wanted nothing more than to spend every second with her, playing with her, hugging her, making that connection.  And her mother noticed.  And it was obvious that she didn't get that kind of reaction to her daughter as often as she should.  I knew, then, how de-valued people with ID probably are in the world, and how much that needed to change.  I felt protective.  Now, after Samantha, I understand all of that and so, so much more.  I am certainly no longer afraid of intellectual disability, and try to advocate through my blog, Facebook, and my every day life to help change public perception and fear of the unknown.  

Q.  How many adults with Ds have you met and does meeting an adult with Ds scare you or comfort you?

A.  I have met countless adults with Ds.  In the area in which I live, there is a huge Down syndrome population.  Surprisingly, meeting the adults has always been comforting to me.  My first real encounter came about a year after Samantha's birth.  I attended the ARC picnic one summer, mostly because I needed to bite the bullet and get out there and catch a glimpse of Sammi's future.  Samantha and I went on our own and soon and struck up a conversation with a remarkable woman with Down syndrome who was about the same age as me.  I came away from that encounter feeling overwhelmed with emotion, as if I had suddenly decompressed after a year of worry and fear.  Actually, that description isn't far from the reality of the situation.  I suddenly knew that everything would be okay, that Samantha had a bright future, and that I was no longer so afraid.  My husband began working for Special Olympics soon after that, and the exposure and catharsis continued.  I saw people of all abilities, some verbal, some non-verbal, some with health issues, some with behavior issues.  But I was never scared of the future.  Everyone has their place in their families, in the community, in the world.


Tuesday, November 5, 2013

She Knows She Has to be 18 First...

This morning Samantha read a book about responsibility.  And while it touched primarily on topics like telling the truth, doing chores around the house and protecting the environment, she learned another lesson at the polling center in her school gym when the man behind the table patiently explained the rights and responsibilities of voting.  I know she didn't really understand, but it's the first step, and one of many more to come over the next 11 years until she hits the magic age of 18.  Actually, she thinks 17 is a magic age right now because that's when she'll get to drive.  And then, one day in the not-too-distant-future, she'll learn about that other magic age of 21...

Monday, November 4, 2013

Just an Ordinary Day in the Life of an Ordinary Girl

October 31st, Halloween, was an ordinary day.  Not ordinary as in the usual sense of the word, as in a day when nothing much happened - to the contrary, it was a rather extraordinary day in that sense, in that it was comprised of both a field trip to Mt. Vernon and Trick-or-Treating. 

But for one girl, a girl with an extra chromosome, who looks a little different, learns a little slower, and doesn't always understand what her typical peers at her age are talking about, for the parents of that same little girl, who worry about how she might be accepted by those same typical peers, who worry about how her life as a 7-year-old child is so much different, perhaps isolated by the typical peer friendships that are growing around her, it was an ordinary day.

The morning started out with a 2nd grade field trip to Mount Vernon.  You may have read in my previous post how worried I was, perhaps less about behavior or safety while there than about the long bus ride, lack of seat belts, and a stranger (to us) driving her so far away from us. 

Thinking about her all morning while I sat at my desk at work, toiling over something that wouldn't be too taxing to my pre-occupied brain, I received an unexpected and wholly-welcomed text message from a friend, another parent of a 2nd grader, who sent me a photo of Samantha, on the field trip, smiling, linked arm-in-arm with two of her male friends.  It was so ordinary it was nearly startling.  It could absolutely have been any three children posing for the shot, so natural, so comfortable.  They were all obviously enjoying each other's company.  And all reports back after the field trip were that Samantha had a great day, and had a lot of fun.  When I got home I asked her what she saw, and she told me she saw hay stacks, and did a corn maze.  Sure sounds like fun to me!

That evening I got her ready for trick-or-treating, dressed as a Lalaloopsy doll.  If you have a little girl, you probably know what this is.  If you have a boy, I can safely say this has absolutely nothing to do with Power Rangers, Thor, Minions, or whatever else boys are into these days.  (Yeah, yeah, I know I'm about as totally clueless about boy stuff as you are about girl stuff...)  I then dressed myself in my (sleeveless) angel costume, resurrected from last Saturday night's party I attended in New Jersey, thrilled that the weather was so unseasonably balmy.  As the already murky, cloud-filled sky began to darken, we headed out, hoping to be back from our door-to-door mission for candy before the bulk of the other trick-or-treaters got to our own door, or before the rain started to fall. 

Along the way we met up with a former classmate, a young man who has always taken Sammi under his wing, who has been a loyal friend since they met in Kindergarten.  Actually, the very same boy who was posed in the photo texted to me that afternoon.  He asked if Samantha could trick-or-treat with him, and we excitedly agreed, happy to see her enjoy time with a peer outside of school.  We and the boy's mother stood back a bit, watching them run across lawns to each house, one after another.  She fell behind, he called to her to catch up and waited patiently as she did.  Her boot came untied, he quickly stooped to re-tie it.  She balked at a tall stone staircase, he asked for and received extra candy from the homeowner to give to her, waiting for him at the bottom.  He never treated her as anything less than a peer, a friend with whom he was obviously happy to spend time.

Funny that Sammi has no idea what that evening meant to us.  And I'm sure the boy doesn't either.  It was all 

By the way, I learned something this year...if you trick-or-treat with your kids and carry around a plastic cup, chances are you'll get some beer or wine in it along the way.  Just sayin'...

(PS.  I didn't even mention the way her classmates flocked to her at a birthday party I took her too on Saturday!  Genuine happiness that she was there, and one girl even said she only came because she knew Samantha would be there.  They stuck with her, played with her, included her.  My faith in her future is strong.)

Even Lalaloopsies like peanut butter toast for dinner.