Monthly Archives: October 2011

Whip Me Up

It was the first thing I noticed this morning as I dragged my weary bones out of bed.  That unmistakable autumn howl here in New England.  An eerie, echoing wind that is difficult to do justice if you don’t already know its sound.  

It whips around, weaving in and out of the cookie-cutter ranch homes on our street.  It lifts the reddened leaves from the pavement and scatters them elsewhere.  I can smell the wind slipping in through the cracks around our doors and windows and I think to myself that perhaps it will be a very cold winter this year.  

But today looks as though it will be a beautiful day – dotted high clouds and a sharp crisp in the air.  But I’m not buying it.  I am angry.  I feel battered and beaten. 

I know how to make good from the bad.  I have had lots of practice in the last several years.  I really do often fight the urge to complain, rather I embrace the suckage and try to find the silver lining.  That damned silver lining. 

We have had success at hockey games before with RM, but this time she unraveled right before my eyes – and so did I.  It didn’t matter what I had packed in to make her comfortable or whether I bought her soda – or a doughnut – or a pony at that point – it just was physically painful for her.  But we had rinkside seats yesterday that were a gracious gift from dear friends and The Boy had nearly shat himself with excitement to experience a game all up in his face.  So when RM began screaming NO!!! I took her out into the concourse to give her a chance to regroup.  It never happened. 

I felt like one of those color-streaked leaves being lifted and slammed onto the pavement – over and over again.  I can only imagine how much more painful it was for my baby girl.  

Silver lining.  Silver lining. 

Ok.  There was a silver lining to my baby’s pain yesterday.  Unfortunately for her, it was the joy that hockey game brought to her brother.  It was the small amount of time that The Boy and his Daddy sat together on the glass and watched two awesome fights break out right in front of their eyes.  It was the soda and popcorn and fist-pumping and cheering that The Boy ate up like candy.  

And it was the comfort I witnessed as The Boy took RM’s hand in the car on the ride home and just held it for a spell.  That damned silver lining was there in the moments of conversation that evening with The Boy and the opportunity to hear him recap the 2nd Period and how the glass shook from the glorious violence of a great game of hockey.  I watched and listened as his face glowed while he spewed all the gory details. 

 Then The Boy’s tears came and I panicked and my heart pounded as I thought Dear GOD, what next?  I cannot take any more suffering tonight!  “I felt so sorry that you and [RM] were stuck out in the lobby that whole time.  I’m sad that she hurt.” 

Silver lining.  Silver lining. 

“I get that, Snugglebear.  But you listen to me and you promise me something, ok?  Don’t you ever feel sorry for your sister.  Not ever.  She is happy.  And she is perfect just like you.  And she hurts sometimes, yes, just like you.  But don’t you ever feel sorry for her.”

I grabbed my son’s increasingly large and lanky body up into my arms and squeezed him so tight.  I felt so close to him and suddenly so relieved that this moment had come to me – a silver lining – out of a day of pain. 

The Boy loves his baby sister and I am really so blessed.  No matter the winds that howl around us and threaten to whip us up and batter our hearts – there are beautiful days ahead.  I will spend a little more time today being angry and feeling beaten because I am allowed to do so.  We all are.  But then I will step outside and welcome the sun once again. 

It’s what I do.

 


#WW – Our Village

This is our Village.


Lost and Found

The other day I wrote about labels and my own emotions surrounding an ID bracelet for my daughter that would label her as ‘Autistic’. 

About thirty minutes ago – in the blink of an eye – my entire perspective on labels changed dramatically.  Forever. 

RM was missing. 

She had spied her brother riding his bicycle around the block and decided to do the same.  Right under my nose.  We live in a thousand-square-foot ranch.  She was literally. under. my. nose.

She had taken the step stool from the bathroom and used it to reach the latch at the top of the front door. 

It was ten minutes or so before I realized she was gone.

I had never felt so sick to my stomach before in my life.  I couldn’t breathe. 

I raced outside screaming for her. Screaming at the very top of my lungs with every bit of air I could squeeze in so that I could expel as hard and loud as any human ever had.  I wanted the world to hear me.  Because I knew my baby girl wouldn’t respond – someone had to

I found her rather quickly.  THANK GOD. 

She was gearing up to get on her bike and take off in search of the fun her brother was having. 

She smiled when she saw me and exclaimed, “HI, MAMA!!!”  Completely unaffected by my panic and tears. 

That damned bracelet cannot get here soon enough.

I am seriously considering the GPS tracker.

And now that the episode is over, both kids are tied up and stuffed in the closet – I’m having a drink.

F’ing Cheers.

 

 


Label Maker

I’m not much for tears.  I mean I am capable of producing them and I do on occasion.  But at the moment they are pouring down my face and I can barely see what I am typing.

We had a monthly review at RM’s outplacement school yesterday.  It has been six months since she started there.  This was the first review the SGM was able to attend, so I was anxious for him to get to see the amazing things the staff is doing with RM. 

It went very well.  It was organized a little differently than a typical review because the staff wanted SGM and I to help them complete a survey first.  So rather than get to see RM at work right away, the grownups gathered in a conference room.  We were asked a few dozen questions about situations that may be stressful for RM.  For example, on a scale of 1 to 5 – how stressful is it to RM to take a trip to the grocery store?  Those kinds of things.  It was designed to help staff tailor goals and objectives to make life a bit smoother for her. 

Overall, it proved that RM is a pretty happy kid and though some situations are extremely stressful to her, many are not so bad. 

As we wrapped up the discussion so that we could head to the review room and see RM, we stopped on the topic of ‘fear’.  Well.  RM lacks fear of danger, like many of our kiddos with autism.  She is getting better at not running out into the street, but that’s from lots and lots of consistent programming – reminding – her not to just step right off the curb.  She doesn’t actually know that it is dangerous out there and if we weren’t around to remind her, she would totally run in front of a car without hesitation.  She has no fear of water and though she isn’t exactly a wanderer, she does have a pretty stubborn sense of independence.  Sometimes just being able to open something (like the door to the garage) is fun to her. 

So we concluded that an ID bracelet is a really good idea.  The staff will work-in a tolerance program during the school day to get RM comfortable with wearing the bracelet.  The goal is that eventually, she will wear it 24/7.  It was a great idea and at the meeting I felt comforted and relieved at the decision. 

But then this morning, I actually had to order one. 

When I clicked ‘Pay Now’ it was like a stab in the heart and the tears just started pouring. 

It hit so very hard that I am essentially putting a real, tangible label on my child.  

She has: ‘AUTISM.  If lost call 911’ 

I’m still crying.  It still hurts.  Not because of the autism itself.  Not because of who my daughter is.  I hurt because of the dangers that exist in this world and my beautiful daughter’s inability to protect herself from even the smallest of them. 

I cry because my daughter is SO MUCH MORE than a label around her wrist. 

I cry because no matter how much it sucks, I will do ANYTHING I can to make this world safer for her.  ANYTHING.

MedicalIDStore.com

I’ll even slap a label on her.

Because I love her THAT. MUCH.

 

 

Hatching Our Plan

 

So much to do.

So little time.


Beyoncé’s Little Brother, Solange

Recently, I read a post by The Bloggess – And that’s why you should learn to pick your battles

It has obviously struck a chord with people – there are greeting cards available and a Facebook page dedicated to Beyoncé, the giant metal chicken.  And oh yeah, by the time I left a comment on the post, there were more than three-thousand already (mine is #3394).  Some were vicious, I cannot imagine why.  Maybe those folks have a heart two sizes too small or a mouth three sizes too big.                       

Regardless, the phenomenon of Beyoncé’s catch-phrase “Knock-knock, motherfucker” is hard to ignore.   Sculptures of chickens (YES, we get that they are really roosters) from the very small to the very tall are flying off the shelves at Home Goods stores everywhere.  They are disappearing from flea market tables and causing many close-calls on the back roads of America where local nurseries and antique stores dare display these items in sight of drivers.

It seems The Bloggess has unintentionally created a universal litmus test for the strength of marriage and perhaps even a whole new meaning to gift registry for anniversaries.  I even found a football forum online that discussed Beyoncé, the giant metal chicken at length.  

Some guy on the football forum risked his own manhood to leave this comment: 

“Y’all living with women–what are you fighting over towels for? I think that’s the most popular impulse item they like to buy–they’re relatively inexpensive, and an easy way to redesign a bath with colors. New towels ensure that they’re fresh and fuzzy and that gives your lady a thrill coming out of the bath….Let it happen! Embrace it! Plus–then you’ve got a constant supply of older towels for washing dogs and trucks, and mechanicing when they really hit the dirt. Ultimately it’s a wonderful way to keep good rags around.”

My point is this – either your husband will find the humor in this story or not.  Because let me tell you, it ain’t about the towels.  And it sure as hell isn’t about the money.  Some lessons are priceless.  Sometimes humor in a marriage is priceless.  

Sometimes humor amidst the everyday crap is really, truly invaluable. 

SGM loved this post by The Bloggess.  He totally gets it.  I am not so certain he would have found the humor in it six years ago or so.  But when you survive certain bumps in the road like 4q, two wars and a sprinkle of autism thrown in – you quickly learn what battles to pick.  And you learn that at the end of the day, if you’ve spent a few bucks on happiness – on something that will be a constant reminder of what really matters in life – it was worth every penny. 

SGM loves Beyoncé’s story even more because he has seen the laughter it has brought to so many of my fellow autism Warrior Mamas, too.  And THEIR spouses.

So with his blessing we will soon have a new houseguest.

 

3-foot tall metal chickens at PiperChase rusted garden

 

But Solange (pronounced so-LANZH) will not be staying for too long.  He will be making the rounds on a national tour of us Warrior Mamas’ homes.  Because not only should we all learn to pick our battles, but we should share the ammo, too.

Cheers, MoFo’s!

 


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