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
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
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
Cathy Jameson is a Contributing Editor for Age of Autism.