Monthly Archives: March 2012

Before

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Before the world goes Blue.

Before I get on my soapbox and preach awareness, and acceptance and action.

Before April comes and Autism is everywhere…

I needed a day without.

So today, I aimed to live as Autism free as possible.

Today just was.  There were no schedules.  No expectations.

Just Mommy and Son.

We went to a local children’s museum.  One that historically has been hit or miss.  On a whim, we saw an IMAX film in 3D about the ocean.  EB loves 3D movies.  I, on the other hand, typically fight nausea as my eyes try to adjust to items jumping off the screen at me, and the loud noises are anxiety producing.  It didn’t help that there were eels in this film.  Eels that I will dream about eating my nose off forever thank-you-very-much.

EB held my hand and fed me popcorn and dictated loudly the whole movie.  Which I don’t think anyone minded because it wasn’t The Hunger Games or anything.  I mean, there are no spoilers in the electric eel movie, unless you are me and didn’t realize that there were eels in it.

After the movie we went to the museum and played.  I do mean played.  I played like I haven’t in a long time.  I didn’t hover over him.  I didn’t try to protect him from embarrassing himself , or tripping over other children or walking into walls.  I just let him be…himself.

And he was so happy.

And so was I.

We were happy.  We were Mommy and Son.

Oh, we had our moments that were clearly spectrum based.  But I winced a bit, swallowed, and moved forward.

Because it’s March 31.  It’s anti-Autism awareness day.

We finished and we went to Pizza Hut to eat.   Do you remember last time we went to Pizza Hut?   But we did it and it was really good.

On the way home, the day disintegrated rapidly.  I expected this, really I did.  We held it together so well all day.  Do you have any idea how hard it is to fit in all day?

Take it from us.  It’s really really hard.

Yet, I still count today as a glowing success.

Tomorrow will come.  April will illuminate the blueness of Autism.  I’ll turn on my light.  Because that’s what we do.

And I’ll write about all the things we need to fight for.  Because “awareness” should really be the least of our concerns at this point.

I digress, it’s not April yet.  So allow me, if you will, the opportunity to relish in the opportunity to snuggle with my little boy…

Just a Mommy and her Son.

 

 

It gets better?

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Yes, that is a question.

I want to know when it gets better?  Or if it gets better.

In the grand scheme of things we’re still rookies in this game.  I feel like Autism has been my life forever, but Everybody’s Boy isn’t even six year’s old yet.

I have friends who have traveled further on their journey.   Five years our senior, ten, even fifteen.

I ask them,  ”Does it get better?”

They tell me, “It gets different.”

Different doesn’t give me much solace.  Different isn’t exactly something to look forward to.

This weekend EB ran from us multiple times, screamed and cried endlessly, painted  his plush toys with shaving cream at 4 a.m., pounded his fists into his head, pounded his fists into my head, destroyed dozens of potted seedling at Home Depot, spit Sprite all over Gus, bit, kicked, threw…

I don’t think it’s necessary to go on.

We are all absolutely at wit’s end.  Nothing is helping.  His impulsivity and irrational thought process is impenetrable.

He is almost 70 lbs and over four feet tall.  I physically cannot handle him.

I try, I do, but it only makes things worse.  He opens his mouth and horrible strings of words he can’t possibly mean or comprehend come out.  He strikes out.  He destroys things.  He hurts himself and others.

So then I don’t try.  I just stand there in some kind of paralyzed awe.  I stare, I cry, I sigh and sit on the floor with my fingers tightly gripped around the ever-graying roots of my hair.

This is not effective either.

Consequences are not effective.  He doesn’t understand cause and effect and I can’t truly say that he is aware that his actions have meaning.  In fact, it’s almost like he’s not there when these meltdowns happen.  How do you punish a disability?  Isn’t his having to feel unglued for a good part of his life punishment enough?

When he’s “here” (as I call it), he is loving and rational and rarely able  process those episodes.  

I just keep thinking that it has to get easier at some point.  For him, but also for us.  Because how can we support him when we are so emotionally depleted?

Maybe that’s why it get’s different?  Maybe we don’t have the fortitude to continue with things like they are right now long-term.  So maybe it will change.  This will get “better” but something new will emerge?

So along with everything else, Autism is also this impervious chameleon of gigantic proportion that we cannot even begin to understand.

It’s hard to see my son suffer.  It’s hard to be of no comfort to him.

But it’s also really hard to navigate this as a parent.  I’ve tried so hard not to make this about me at all – because this is his story – but it’s about me too.  It’s about him and me, and Gus and our families and our friends.

I wonder what’s next?

 

 

 

 

I don’t know how you do it!

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We’re all familiar with this scenario.  The well-meaning acquaintance says:  ”I don’t know how you do it!”   ”I don’t think I could!”

Sometimes they “pat” you on the arm as further condolence.  Sometimes you just stand there, mouth agape, waiting for an exit strategy to come to mind.

Or, if you are me, you end up consoling the concerned acquaintance, with some platitude like “Oh, it’s not a big deal.  We’re fine.  No, actually we’re great!”

People mean well.   I tell myself this 20 times a day.

They just don’t understand.  I tell myself this 30 times a day.

It really is okay.  I tell myself this 75 times a day.

In the end, I spend a great deal of time talking to myself.

When I’m not consoling everyone else about my child’s Autism, that is.

Did I ever say those words to someone?  Is this some kind of karma thing?  Like some existential lesson I failed to learn years ago?

If it is, haven’t I endured enough?

Being strong is really hard.  Caring for everyone but yourself takes a toll.

At some point you realize that sadness and anger are indistinguishable from each other.

They both feel the same.
They feel like pain and loss.
And that feels like weakness.
And you are not weak.

I mean, isn’t that what everyone is telling you?  They don’t know how you do it.  Because they see that you are strong, that you are doing it, and they don’t believe they would have the fortitude to persevere.

The truth is, of course, that they would.

You didn’t think you could, but you are.  Is there ever a nanosecond that you question that you would?  Never.  That you could?  Probably.

But these are our children and we are not programmed to fail them.

It’s not an option.

So we fail ourselves, and our friends, and our family and our work instead.

But we do not fail our children.

How do we do it?

The same way our heart beats.  The same way our lungs fill.

Without pause.  An act of survival.

A merit of nothing but conquering the very basics of life.

We don’t pause.  Because pausing gives us the opportunity to feel….question…doubt.  There isn’t time for that.

It’s amazing that in this self-imposed numbness, this self-defensive model in which we exist, the ability to feel is ultimately what keeps us going.

How do you do it?  How do I do it?

The same way you would if it were your child.