Lingering Questions

I always have lingering, unanswered questions about David’s day.

Who is he sitting next to in the classroom?

Has he been buying milk at lunch during summer school?  Because although I have not counted the change in his lunch bag, it does not appear that the stash of loose change is diminishing.

Often, my questions involve the papers that I find stuffed at the bottom of the SpongeBob backpack.

Like this one.

I think David might have missed the point of this assignment.

Often, there are pieces of artwork that are unrecognizable to me, or that I may not understand the significance.

Any guesses?  Captain America?  Does he even know about Captain America?

And yesterday, he brought home this paper.  This time the image certainly recognizable and very appropriate as the theme of summer school this year is Camp Cub Space Adventure.

My question, however, is this.

Did the teacher tell David to line up all the planets?

Seriously, was he supposed to put all the planets in a line?  Or, is he predicting some sort of cosmic convergence? 

Becoming the Heroine

I got tears in my eyes yesterday when I heard that Nora Ephron had died, which isn't too surprising because it is well documented that I am a weeper. But, really? I didn't even know her.

But I feel like I knew her. I feel like she is that old friend—you know the one you don't talk with very often, but when you do it is as if no time has passed. I feel like I knew her because she often wrote of her own life experience, wove her own personality into her characters.

Her movies are among my favorites, the DVD's that sit in the storage box in my bedroom closet—the DVD's that I watch when my husband is out-of-town, or I need a good laugh, or even a good cry.

Nora Ephron created female characters who are smart, ambitious, funny and flawed—characters to whom I can relate.

Last night on the evening news, they offered this quote which had been taken from a commencement address she gave in 1996 at Wellesley College, her alma mater.

Above all, be the heroine of your life, not the victim.

Most of the time it really is a choice, isn't it?

Kathleen Kelly, the Meg Ryan character in the movie, You've Got Mail, put it this way.

Sometimes I wonder about my life. I lead such a small life—well, valuable, but small—and sometimes I wonder, do I do it because I like it, or because I haven't been brave? So much of what I see reminds me of something I read in a book, when shouldn't it be the other way around? I don't really want an answer. I just want to send this cosmic question out into the void. So good night, dear void.

I have spent the last few weeks, trying to become the heroine, not the victim--trying to be brave and make brave decisions. I am beginning to realize that I am never going to feel like I have enough time, so why am I waiting to set a pretty table on the deck and eat outside, to use the quilt that was handed down from my great Aunt Weezie, to eat dessert off of the hand painted dessert plates that cannot be loaded into the dishwasher?

Why did I stop writing when writing is what I love to do?

I don't really want an answer. I just wanted to send this cosmic question out into the void.

So good night, dear void.

"Adaptive" Swimming

We have always had to coax David out of the bathtub—to cajole him or bribe him or when all else has failed, try to get a good grip on his slippery skin and lift him out.

If left to his own devices, David would stay long past the time when his fingers and toes shrivel up and the water grows cold and the few remaining bubbles cluster together at the edges near the porcelain.

David has a love affair with the water.  He loves being in the bathtub or pool, playing with the hose, or even watching the automatic sprinkler on the lawn, waiting patiently until the light catches the mist just right to form a rainbow.

In an effort to capitalize on this interest, David has been enrolled in swimming lessons for a couple of years.  He took several sessions of “adaptive” swimming, designed to teach kids with challenges including autism and obviously, adapted to their needs.

You see, I had determined that swimming would be the perfect sport for David—a team sport, but not really a team sport.  And although I do not anticipate he will be the next Michael Phelps or Ryan Lochte, maybe he will be able participate on a swim team during junior high or high school.

We are always wondering how David will fit in, and looking for his strengths, which are numerous and though they may not include terms like conversationalist, certainly do include traits like clever, enterprising and resourceful.

When it became clear that David had outgrown the adaptive swimming routine of dog paddling around the pool chasing a ball, we enrolled him in some private lessons several weeks ago and while he may love being in the pool, he is not accustomed to being asked to work on strokes, kick his legs, build endurance.

Michael took him to his Sunday afternoon lesson and although he had been watching, I am sure he was also using the opportunity to answer some e-mails on his blackberry.  So, when he heard the swimming teacher utter a sharp “HEY,” it got his attention.

“YOU ARE WALKING!  I thought you were SWIMMING,” she scolded.

Sometimes, adaptive means adjusting an activity for David’s level of skill or providing extra assistance to him in some way.

But, I have found that many other times, adaptive means adjusting our own expectations when we have underestimated David’s abilities and his strengths.

Did I mention that he is clever, enterprising and resourceful?

Birthday Party Blues

As David's social secretary, I sent his regrets in response to the most recent invite--the backyard birthday adventure celebrating a classmate's 6th birthday. I said that we were going to be out of town--or that David had a previous engagement--or that he was throwing out the opening pitch for the College World Series Championship game--I can't really remember.

The truth is that I didn't want to tell the truth, that birthday parties are hard on David, and by translation, also hard for me.

David and I just attended another classmate's party last week. I had been excited about this party. For a myriad of reasons, let's just say that the family of the birthday girl belongs to the group of people that "gets it" and I knew I could respond to the party without all of the usual disclaimers. Plus, this Mom had volunteered in David's classroom every week and I was somehow convinced that David would be delighted to see his classmates, as well as this volunteer Mom who spent countless hours working with David in small groups each week.

The party started with a lively game of parking lot tug-of-war. David even won that game, although I must say I was at an extreme disadvantage, what with trying to hold onto my purse, cell phone, car keys and birthday party present and still get some traction with my sandals on all the loose gravel in that parking lot. Plus, I realized that there was an exceptional view through the plate glass windows of the kids gym for all of the other parents to see me tugging on David's arm, trying to convince him simply to walk through the doors. I let go...gently...and not surprisingly David bolted for the car.

The next activity was an animated round of keep away. The birthday Mom, having already removed her shoes in adherence with the gym's "socks only" requirement, removed her socks and walked barefoot out into the aforementioned gravelly parking lot just to say "hello" to David. Apparently feeling unusually snarky, David locked the car door just as she was reaching for the handle to open it.

By now, I was embarassed and put the key in the ignition so that I could roll down David's window. She stuck her arm in the car, trying to convince David to give her a high five.

I could almost see the wheels turning as David considered whether or not to roll up his window, but used his better judgement and did not test the quickness of her reflexes--well, that and the fact that I was afraid and did not remove my own finger from the master "window down" button.

Not surprisingly, there were no high fives exchanged.

The final game was beat the clock, as David and I raced home just as the dark clouds of a thunderstorm were rolling in with the promise of heavy rains and high winds, perhaps the real reason for David's agitiation. We pulled into the garage just as the huge raindrops began to hit my windshield.

Three birthday party games and three victories for David.

So, the truth is that, while David may have had a most excellent time with the party games last week, I do not have the energy for the backyard birthday bash edition this weekend.

******

I have learned that while David might not always stay for the whole party, or participate in all the activities, we can make a splash by bringing a great present—idea, of course, supplied by my clever sister, Annie.

A movie theater gift card, packaged in a plastic popcorn container (found in the dollar section at Target), along with microwave popcorn and other movie-themed snacks.

This Has Been a Test of the Emergency Broadcast System

My family firmly believes that I am a happier person when I am writing and they are probably right. There, I said it. My 15 year-old nephew, Thomas, was one of the family members who would give me gentle encouragement in ways that only a six foot some-odd inch basketball player can subtly muster, which one night included a bluntly put if completely unsolicited, "Do you know what I think you should start doing again? BLOGGING."

This comment almost gave my niece apoplexy, until she realized that Thomas had not just told me that I needed to start JOGGING, and was not, in fact, commenting on my sorry physical shape, but rather growing weary of never seeing his name and/or image grace the pages of my blog.

Consequently, I have been reminded that I like to write, perhaps I even need to write, hence my recent predilection for prose, which may most accurately be described as my WAAAAAH, WAAAAAH, WAAAAAH period. Again, insert the wisdom of a 15 year-old, who instead of congratulating me on my triumphant return, asked the following question.

Isn't your blog called OUR butterfly moments and not MY butterfly moments? Enough about you. What about David?

And my response to this verbal sparring?

Touché.

So, we now return you to our regularly scheduled programming....

Stay tuned tomorrow for more of David's madcap misadventures and an account from my hairdresser that the “shiners" (her polite term for gray hair) have recently been multiplying exponentially at my temples.

In Therapy?

Judging from the startled look on her face, my physician did not expect me to start crying when she informed me that my thyroid levels were completely normal.

You see, I had convinced myself that my thyroid had shriveled up and died.

Most of the women in my family have thyroid glands that just pack it up and move to Florida at about my age.  In my mind, that was the perfect explanation for so many things.  The fatigue.  The agonizingly slow weight loss.  The sluggish global economy.

And, after telling me what she had anticipated as the “good news,” my doctor hesitantly moved to the discussion of cholesterol.

After five months of exercise and watching my diet, I had managed to lower my LDL (bad) cholesterol by almost 10 points, but I had also managed to lower my HDL (good) cholesterol by about the same amount.  And the really exciting news?  My triglycerides were up 20 points.

And for those of you who need not worry about the intricacies of cholesterol components, ideally “triglycerides” should not be paired with the directional descriptor “up.”

My reaction?  More tears.

And then she kindly asked about David, how I was sleeping and if maybe, just maybe I was under a tad bit of stress.

Full blown weeping.

I am not exactly sure what she said then, but it included the phrases someone to talk to, really good therapist, and at least four visits.  Before I could even blow my nose she had sprinted back to her office to retrieve a business card containing the referral information.

I never thought of myself as someone who would be “in therapy.”

Although I must admit that there is some appeal in being able to say things like I am terribly sorry Jill/Rob/Shakira that I cannot help with the fundraiser/room party/mini-oreo cookie eating contest, but my THERAPIST has advised me that I need to put myself first and limit my commitments.

But then again, four sessions times a $20 co-pay per session equals $80.  Does anyone know where I can schedule a hot stone massage?

Clearing the Hurdles

I feel as if I have lost my footing.

 

I am not exactly happy, not terribly sad, just tired.

 

Like I have been running a race and believe that I am nearing the finish line, when instead I am tripped up by the first in another long series of hurdles that stretch off into the distance.

 

I feel like I have my priorities all wrong, but without some dramatic action I am not sure how to make them right again.

 

Michael and I mistakenly assumed that once we could get David talking, everything else would be a piece of cake.

 

Well, we were wrong.

 

Just when I feel like we have something mastered, it seems as if we don't. Just when I stop worrying about things like the first day of summer school, recalling all of the other "first days," smugly thinking we've got this, David pulls me back into reality by doing something cute like throwing up on his shoes.

 

Three times.

 

Once for each of the grievous sins of the day.

 

The bus arrived 45 minutes late and was not a wheelchair bus--no hydraulic lift.

 

Unaware of the lunch routine, the summer school teacher, upon seeing David without a cold lunch--usually a nutritous pairing of goldfish crackers and a yogurt stick--put him in the hot lunch line instead of prompting him to go back to he room and get his lunch bag.

 

And finally, the field trip shirts that were distributed are black and not David's beloved red. He refused even to shove it into his backpack.

 

Instead, he punctuated the day by throwing up.

 

Didn't we have to fight this same field trip shirt battle last year?

 

Did I really think that the disgusting combination of a little too much chardonnay, paired with nacho cheese doritos and a mini oreo cookie kicker would make me feel any better? Because I nearly ended up urping on my own shoes.

 

I am trying to take a page from David's playbook. David, who smiles most of the time and flashes his big blue eyes at everyone he meets. David, who on the second day of summer school, pointed out the puke on his shoes, but refused to let me change them--or clean them--or hear any talk of replacing the shoes that he has worn the whole year and have seen better days.

 

Instead, he marched bravely out to the bus, head held high, wearing his splattered shoes like a badge of honor.

 

And so, we move forward. Still trying to appreciate the little milestones even if they seem like they should be routine by now.

 

Still trying to snap a picture of David, who went to the zoo today wearing his new black t-shirt.

 

Even without a red shirt over it.