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Every Day - Exactly the Same

Posted Oct 01 2012 12:00am

Smart cookie By Cathy Jameson

An unlocked office door + unmanned computer + an incredibly-smart-yet-trapped-inside-his-body little boy = an unbelievable tale

Ronan likes to use the computer.  He’s getting really good at turning it on and keeping it on (instead of turning it on/off, on/off, on/off because it doesn’t load fast enough for him).  But, because he’s not so gentle with the computer I sit and work with him when he wants to use it.  With his lack of patience and how busy our household is with four other children underfoot, Ronan finds other ways to get to the computer—usually sneaking in after the door has accidentally been left opened or unlocked.  Ronan is really, really good at quickly typing Youtube into the search box, acting with lightning speed because he knows I will come running when I discover what he’s done.  Ronan’s really, really, really good at quickly typing Baby Einstein in too (even though at the age of 9 ½ he should have moved on from this genre of movies).  He’s not really good at keeping all of that on the down low though.  Ronan gets so excited to see that green lizard puppet and lets off a loud tell-tale “I’VE MADE IT INTO THE OFFICE” squeal.  That squeal is an instant alert which sends me running to make sure that Ronan’s hasn’t locked me out of the computer or caused it to crash. 

Ronan’s latest office infiltration happened Wednesday evening.  He’d had a fairly good day at school and a superb afternoon at home.  The previous ten days were full of aggressive behaviors at school and with equally troubling issues at home.  When a calm and peaceful Wednesday rolled around I felt like we were finally out of a rotten funk that hat started to drag both of us down.  With a good school report and some fun playtime later with me, Wednesday turned out to be a glorious day.  Ronan was engaged, confident, playful and really chatty.  Even though real words weren’t coming out he was stringing a lot of new babbling sounds together.  More exciting was that Ronan had inflection with each of these.  I recognized his “Ahh dah doh?” with a small tilt in his head, with his arm outstretched and with his finger pointing directly to something.  Questions were spilling out of him while his eyes locked onto mine.  I labeled everything we saw in the hopes I was correctly answering his unintelligible question.  Ronan  signed what he could, or pointing again to the objects he wanted labeled, while I respond with the word.  We did this for an hour.  If Ronan smiled after I labeled something correctly, and then we fingerspelled the word together.  Wednesday was full of back-and-forth exchanges and it was wonderful.  Ronan even played with real toys unprompted and for several minutes.   My heart was full.  Yes, Wednesday was a great day.  And it was glorious.  Until it wasn’t.

After Ronan was done asking me a gazillion questions he went to the den.  I watched him build a few towers with the LEGOs.  He finished several puzzles, putting them back together with ease.  Since he was settled and playing so well I walked to the kitchen to concentrate on making dinner.  While I was two rooms away, Ronan left the den area and slipped into my office which I’d thought I’d locked.  Things got quiet, too quiet, so I looked up to find the den vacant.  I tore around the corner to find Ronan standing at the computer with his hand on the mouse.  Looking at the screen I was not surprised when I saw ten Youtube windows open.  Oh, Ronan!  He moved his hand away, and I started to shut the windows down one by one.  Veggie Tales.  All of them.  Wait a minute.  No Baby Einstein!?  Yay, he’s moved on to something new, and somewhat closer to his chronological age!  But wait again, what’s this?  One Youtube window looked very, very different.  No cartoons.  No Veggies.  Definitely not a kid song.  And not one I’d ever heard before.  Nine Inch Nails.  What?!  How on earth? 

Before I shut it down, Ronan tried to bat my hand away.  I quickly looked at the song title and stared in disbelief.  Every Day Exactly the Same.   I found a site so I could read the lyrics.  I stepped away from the computer and then quickly shut that window down, too. 

This song.  How?  And the timing.  And the strangeness of it, and yet not so strange when I read a few of the lines.  It had the most ironic lyrics for how Ronan’s incredibly difficult week, no—his life! had been. 

The song blew me away.  They literally stopped me in my tracks and had me clutching my chest as I gasped silently.  If Ronan could talk, could this be what he’d say?

I think I used to have a voice
Now I never make a sound.

I'm still inside here
A little bit comes bleeding through

That song.  Those words.  That message.  How it shocked me, pained me and also mystified me.

Our Wednesday was glorious though, and I wanted to keep it that way.  I shooed Ronan out of the office, turned the monitor off and locked the door.  We had dinner, cleaned up and got ready to for baths and bedtime.  Things were going smoothly, and our Wednesday was back to being glorious.  Until it wasn’t.  Again.

Ronan had struggled in the bath the night before not wanting to get into the tub.  He resisted again Wednesday night but eventually got in the water without incident.  Getting him out was another story.  Instead of walking out of the bathroom with his towel wrapped around him like he usually does, Ronan dropped to the floor and kicked his towel off.  He started to vocalize his disappointment and attempted to talk.  I stayed calm and got him to stand back up.  He took two steps and repeated everything: kick until the towel fell off, yell out and refuse to stand.  He got up again after the short outburst, so we turned toward the direction of his bedroom.  Two more steps.  Fall to the ground again.  Once more Ronan got up but then sat back down in retaliation.  I waited it out always remaining calm and ready to scoop him up when he was ready.  Ten more times.  Ten more stop, drop and cry it outs.  Ten more wait it outs.  We were creeping toward twenty minutes of this.

On his last drop to the floor, Ronan started to sign.  He’d already been attempting to talk, but again with that unintelligible babble I’d heard earlier in the day that I couldn’t understand.  With the crying he was doing it was mostly agonizing noise coming from my child.  Then Ronan signed “hurt” and “head”.  Oh, Ronan!  He touched his head but refused to let me get near him.  Oh, Buddy, I know this hurts. I am so sorry.  This time he lay on the floor longer, adding more signs, motions and babbling.  Then the cry turned and he started to sob.

Ronan was slumped in a heap sobbing while signing “head”, “head”, “hurt”, “hurt”.  That sob evoked such sadness, sadness from him and sadness in me.  I inched closer and stroked his head.  I cradled his face and repeated, “I’m so sorry. I am so, so sorry.”  It was then that the lyrics from that song, that lone Nine Inch Nails song played in my head.  Watching Ronan struggle, thanking him for being able to tell me his head hurt, standing ready to do whatever it was he needed me to do while wishing I could make the pain disappear, it was all I could do to not fall in a heap next to him and cry it out with him. 

Ronan relaxed just enough for me to lift him up into my arms to carry him to his bedroom.  Getting his pajamas on wasn’t easy because Ronan returned to fight mode.  He grabbed my hair, twisted it and cried out again.  The searing pain that went straight to my scalp didn’t slow my actions—in less that ten seconds I had put his diaper on, zipped his jammies and gotten Ronan snuggled under the covers with his favorite blankie.  He released his grip, tapped his head and then let out another huge sob. 

Those lyrics again.  Repeating in my head.   Right there in front of me.  This time it’s me who’s saying them:

I wish this could have been any other way.

With tears streaming down his cheeks, and mine about to flood his bedroom, Ronan lifted his head.  He gently took his hand, put it to his lips and then extended it to my lips. Without the ability to speak Ronan depends on his signs to tell us what he wants to say.  This gesture, that sweet, little hand crossing from his lips to mine is how Ronan says “I love you”.  Oh, how I love you too, Buddy.  I love you. I love you. I love you.  Once more he kissed his hand to my lips.  Once more I promised I would do whatever I have to do for him.  Once more until there’s no more pain, or worry, or need to, I will always fight for him. 

Cathy Jameson is a Contributing Editor for Age of Autism.

Posted by Age of Autism at October 14, 2012 at 5:45 AM in Cathy Jameson Permalink

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