Pomp and Circumstance

Yesterday my husband, his parents and I sat in the front row of folding chairs, in the middle of a giant echoing gymnasium.

Each of us held at least one camera to capture a milestone in the making.

We were there because Everybody’s Boy was graduating from Kindergarten.

At one fifteen the music began and beautifully coiffed children began parading through the front door.  Each searching for their loved on in the audience, each waving and smiling.  They had practiced this a lot, you could tell.

I peered and peaked to see my sweet boy.  His teacher stood as unobtrusively as she could near the door to offer support (or an exit) if needed.  And with a camera to capture the proud moment if not needed.

My eyes were already welling up from the music and the shear emotion of the experience.

Then he walked in…

and he froze…

and then he hit the ground.

His  teacher sprung into action before I could even process whatever was happening before my eyes…  Within seconds he was crying and screaming and she was right there comforting him.

The other children  continued to walk in.  The parade continued, they just walked around him.  I wondered if they’d practiced that part?  The “show must go on” part?

The show did go on.  It had to.

At least for everyone else.

We weren’t paying attention anymore.

The children gathered in front of us.  As they began singing all I could hear was wailing coming from the back of the gym.  I wanted to jump up and run to him, but I also wanted to give his teachers the opportunity to calm him down, something that is practically impossible for me to do in that kind of setting.

There I was in the front row, watching these beautiful children sing a song they learned, that they practiced, for this very moment.  My son had learned the song too.  He had practiced.  But he couldn’t be up there.

I couldn’t move.  I wanted to run to him, but at the same time I didn’t want to be rude and walk away as these kids had their moment.  I didn’t want to hate these children for not having Autism, but I have to admit that I did just a little bit…if I am honest with myself and you.

Thirty seconds were an hour in slow-motion processing time.  Eventually I realized I was sobbing profusely, mere feet from these precious children doing what my child couldn’t…and that I really wasn’t doing anyone any favors no matter what choice I made.

So I got up and I ran to my child.

Because that is what mothers do.

They’d taken him out of the gym so that he could calm down (the song was too loud?  too much?  who knows)

I don’t know who was crying more (EB or me)  but when I reached his teacher.  She tried to comfort me, “He wanted to do it.  He wanted to try.  That’s a great thing, Debby.”

And I know that it is.

But I didn’t want to know it then.  I didn’t want to celebrate how great it was that he wants to be like his peers.  ”He wants to do it and he can’t and that sucks.” I replied, mascara dripped onto my white cardigan…

I recognize I sounded like a spoiled brat.

“I know it does.”, she said softly.   Cause what else do you say to that?

She took me outside to him and I held him as he cried…as I cried.

I said as confidently as I could,  ”I am so proud of you!  You did a great job.  You tried so hard.  I am so proud.  I love you so much.”

After a few minutes he had gained  enough composure to try to go walk across the stage to get his diploma.  His beloved aide went with him.

His Kindergarten teacher  called his name and he ran across the stage, grabbed the diploma from her hands, yelled “CHARGE” and barreled his way through to the other side.

There were a few gasps.  Some uncomfortable giggles from the parents.

One woman behind me sighed and said, “That’s the one that was crying when he came in.”

Much of this I didn’t notice until I watched it replayed on video.

The only thing I noticed at the time was my child in crisis.

I ran to him again.

“I’m so proud of you.  You did such a great job.  You did just what you were supposed to do.”

“It’s okay.  We are all done now.”

“All done.”, I signed again and again.

“All done.”

For his comfort and for mine.

We left the gym and the graduation and went back to our little Autism classroom.

We played Connect Four and laughed.

The tears dissipated quickly (though mine have returned intermittently since)  and life went on as usual.

One week from now no one will remember EB’s meltdown at the ceremony.

But he’ll be a first grader just like everyone else.

And we’ll be “All Done” until September.

 

 

 

 

 

 

 

Almost Six

The clock is digital, but I swear I can hear the seconds pass.

Tick…Tock…Tick…Tock…Five…Six…Five…Six

I lay in bed, snuggling you close.  Close like my life depends on it.

Because it does.

“You are my everything,” I whisper.

“I know,” you reply.

Do you?  Do you really know that you are my raison d’etre?

Do you know that it is possible to love beyond infinity?  Do you know that I didn’t know that until six years ago?

Tick…Tock…Five…Six…

Peter, you just can’t possibly be almost six years old!  The tears flow as I conjure these words.  Full of pride, full of marvel, and full of…loss?

Is it loss to fear you’re growing up?

“I will still love you when I am big, Mommy, ” you say.

My eyes well.

“It’s okay, Mommy.  You are my very best friend.”

I choke back tears and steal your nose and pretend that I am snacking on it.

“Spit it out!”you scream indignantly.  Giggling because it’s our game.

“Will you still play the nose game when you are six?”, I ask.

“I was born when Power Rangers Mystic Force was on.”, you respond –  and our moment of connection slips away for now.

The next half hour are lost in a flurry of complex scenarios encompassing Power Rangers and Super Mario Bros…

You are content.

You aren’t really “with” me during this time.  But you are beaming as you line up your plush toys in the bed, humming the theme song to Super Mario Sunshine and embellishing the story line with pitch perfect sound effects.

I don’t care though.  You work hard to engage with us all day.  You should get to be  yourself sometimes too.

Because you are absolutely marvelous.

I know that soon you will hold the remote with fervor as you wait for Sid the Science Kid to end.  You are meticulous to turn off the television just after the last line, but always before the credits.

I giggle because it’s kind of like how I cannot pull out of the petrol station without resetting my odometer.

We crave routine, you and me.

And we have one of our very own.

At 8:56 p.m. we are the only two people in the world.

You will say “Okay, goodnight Mommy.” and I will say “Goodnight Peter” and I will say “I love you” and you will say “I know.”

Then you’ll pull my head down to rest on your chest and you will drift off to sleep.

I don’t dare move.  These moments are what I’ve dreamed of for a lifetime.

These moments revive me.  They remind me that the love between a mother and a child is bigger than Autism.   They negate the pain and exasperation that can come with the day.

I lie there with my head on your chest, listening to your heart beat…

Tick…Tock…Tick…Tock…Five…Six…Five…Six

I know in those moments that you really will love me even when you are big.

Even when you are six.

~~~~~~~~~

Peter Alexander
Everybody’s Boy
May 10, 2006

Forgetting to remember….remembering to forget

“How I forgot that today was the four year anniversary of our Autism Diagnosis

I took Everybody’s Boy to the polls with me to vote and he was a rock star.  He told the volunteer that handed him the ballot that we were ”here to vote against the “robbers”. which made my liberal heart go all topsy turvy.

We went to baseball afterwards.  It’s a great thing, a team for children of all ages with developmental disabilities.  Yet even there sometimes I feel like a misfit.  Today another child approached me in tears because EB was screaming that everyone was a bully at baseball.  I had to explain-defend-apologize-make better the situation, leaving me feeling sick because this child was in pain because my child was in pain and the whole thing was just…sucky.

With lots of tears and laying on the ground rolling in the dirt (him, not me, but I feel it’s prudent to clarify) we made it through the tough spot and I was so proud…proud that we hung in there….even though it was really really hard.

Daddy was at school today.  His very last day of classes.  He’s now a bona-fide EMT (or ambulance medic in EB speak).   I’m really proud and really scared and really confounded.  I’m so grateful he’s found a career that he excels at and that suits him.  But I have no idea how we will do this with he and I both working full-time.  We have a wonderful support system in Gus’ parents and EB’s developmental therapist, Cassandra…but a long summer awaits light on  services and support, little money for therapy/camps/anything and what happens when we are both gone 40 hours a week?

Also, I really really just want a week…or a few days…in a hotel room with my boys.  Just us.  I don’t care where it is.  I just want to get away from here.  I want to sleep and play and not have therapy, or work, or school, or bills or anything to think about.  It’s not a possibility.  So instead, I took time to dance in the rain today…just like I would’ve at home.

Home will always be Florida.  It’s been over four years we’ve been away.   We left to come to NC and we never went back.  It’s been the best decision we could have ever made to move our lives here.  I would not change it for the world – but I never thought there wouldn’t be room for even a visit in all these years.  It’s too hard to fly with EB. it’s too expensive, we don’t have the time, there are numerous excuses…but sometimes, when it storms like it does today and I find myself running outside barefooted and fully clothed to allow the water to pour down my hair, my back, my face – washing the tears and renewing my soul…I just for a minute forget that I’m not in Florida….that I don’t know when or if I’ll ever be in Florida for one of those thunderstorms I yearn for again.

We went to free comic book day and scored some goodies before the live band spooked the boy and then came home to incessantly google Super Mario Bros characters and create a book.  While making the Mario book with EB  this afternoon I felt a wholeness that had been missing for so long that it actually stuck me with a flood of emotion.  My child and I bonded and played and I didn’t think about Autism or money or what the future has in store.  I was present.

I forgot to remember.

I forgot to remember that today is the four year anniversary of EB’s diagnosis.

I didn’t realize it until after Gus got home, as we were talking about the merits of ordering takeout Mexican food in honor? of Cinco de Mayo.   I remembered that Cinco de Mayo was our diagnosis day.  A day that I typically dread upon it’s approach – a day that I analyze the progress of the past year – a day that I allow myself to feel whatever I want to/need to feel to make it through the rest of the year.

And I forgot!

That’s pretty awesome I think.  I lost myself in my child so much so that I forgot to remember his Autism.

Have I reached some new level of existential nirvana?  Or is it possible that it really is just another day?

Shortly after I posted on the EB Facebook page how excited I was that I “forgot” and how amazing everything was…reality hit.  There was a meltdown, it involved a box of Cocoa Puffs being strewn around the kitchen, and a bite to my head resulting in a mouthful of hair, and while I regrouped and kicked myself for not “knocking wood” the popcorn ceiling in the bathroom (and everything else) being soaked with the handheld shower head.

By the time Gus got home with the Mexican food I had barely pulled myself together enough to get EB diapered and dressed and in bed.

I laughed sardonically at how I had forgotten to remember the autism.

He’s asleep now.  It was a hard day.  In fact it was probably more “hard” than “fun” but somehow the fact that there was cause to forget gives me hope that I might be able to remember to forget more often.

Happy “Cinco de Mayo”.  I think I’m going to see how that two-hour old Mexican food tastes and watch a movie with my husband.  Maybe I’ll even celebrate my amnesia just a little bit.