So the fourth came and went leaving gassy streaks of firework haze fading into a starlit Oregon sky– the smell from lit cherry bombs and barbecues sifting through the landscape, spilling over vegetable gardens and soccer fields. Sean and the dog, Duncan took turns looking surprised, frightened, tense, fleeing the deck, hiding in the basement. Sean said in a breathy gasp, “Who likes fireworks! I don’t!” and the dog barked in complete agreement.
We were invited by dear friends to a cook out but we have
tried that in the past and it hasn’t always turned out so well so we
declined. Little kids racked with
excitable laughter and gripping Sparklers in their eager hands while Sean falls
into screams begging us to leave, to go into the car. Pretty much describes our past eight Fourth
We usually try to get him to sleep before dark before the
skies pop like an electric kaleidoscope and the earth rattles. We double up the melatonin and draw the
shades, put on soothing music and a fan for white noise – create nighttime a
bit earlier. My husband and I make our
way out onto the deck to hear the neighbor kids lighting off witch’s cauldrons
and M80s taking us back to our own childhoods where we lit snakes and threw
snaps and waited for someone to show up with the illegal fireworks that would
lick and spit fire into a humid night.
This Fourth of July I thought about the whole concept of
Independence. My oldest son left with
classmates on a cross continental flight, floating above the United States,
across the Atlantic, changing planes in Amsterdam then onward to France. He is thirteen, a boy really by all accounts,
and yet he carries his independence like a victory flag perched on his
shoulder, occasionally swinging it back and forth announcing his entrance into
He sent no messages, made no phone calls for five days. Only after a somewhat frantic text from me
did he reply – short and sweet: “I made it to the top of the Eiffel Tower. Ok on money.
I am in Barcelona. Train was great.”
Twenty short words and that is all – he has been with me his entire
lifetime, this is the first time he is travelling without family, without
someone that swam out of the same DNA pool and he is adjusting fine, no fear or
sadness, no missing us.
It’s a good thing, I know.
My husband reminds me this as does my father. “You wouldn’t want him calling you in tears
saying he wants to come home, right?”
Correct, I wouldn’t want that.
I’m proud of his maturity and his ability to adapt and I think he’s glad
to get a break from the stressfulness of our household – summers with Sean can
be difficult, a roller coaster ride and not the type that you can’t get enough
of but more the type where your stomach sits in your throat and at the end the
safety harness doesn’t release and you are strapped in having no choice but for
another go around, loop after loop, upside down, right side up, stop and
And then there’s Sean, my sweet, freckled face red head who
at eleven struggles to turn on the DVD player or toast bread. He’s the other end of it all, a child who
can’t survive very long without us – an eleven year old boy that sees a murky
pond in the woods and runs so far ahead of us, kicking up rocks and dust, his
voice wet with tears, crying for his bathing suit – my husband and I unable to
catch the lightening fast, sure-footed boy who runs deeper into the trees and
brush until he falls apart and we follow his screams only to find him
completely lost, unable to remember how to get back home.
He has very little independence, his future weighs heavy on
our hearts, we say things to each other like, and “We have to live a long time.
We have to take care of ourselves. We
can’t die young. Who could take care of
him? All he has is us. Take your vitamins.”
The summer has just started and yet somehow it feels like it
has been an eternity. Sean is with me,
all day. I am not only his mother but
his only companion, his best friend and sometimes I am his nemesis, an angry,
exhausted 43 year old woman who doesn’t want to look at a calendar with him for
the 100th time or go over everyone’s birthdays again – didn’t we
just do that two minutes ago?
I try to remind myself that he can’t help it – his obsessive
need to repeat things over and over, to ask me the same, silly questions again
and again, and the sticky thoughts glued to his head that crawl in and out of
his worried mind, making him fall to pieces, throwing himself on the floor, the
tears, the screaming and pain so raw you could almost hold it in your hands,
arms. He cries over forgetting his
lunchbox on Thursday, April 18th.
I tell him, ‘but that was so long ago, it doesn’t matter’. But somehow, to him, it’s the only thing that
matters and it breaks him down. And I
don’t know what logically I can say to calm his worries, to make it go away
–not in the moment and not forever. He
will bring it up again and again out of the blue and all I can think is ‘here
we go again, hang on.’
And some days I’m not sure if I can hang on if I can rely on
my grip to be steady. Sometimes I want
nothing more than to let go, run and hide, refuse to hold his hand while he stumbles
through the tangled forest of anxiety that lurks in his mind and body. Some days I don’t have enough for him and
certainly have nothing left for anyone else or for me. I want to crash into bed and fall into a coma-like
sleep dreaming of a day that might be different but knowing deep in my bones
that he won’t be free from all the trappings of autism.
At the end of a bad day that’s what keeps me going. If it feels like this for me I can’t imagine
how hard it must be for him, to live in the skin of it, to feel so much and
have little control. I can’t fix it for
him but I can try my best to make him feel less alone and not abandoned. It’s the least I can do for him. He is doing the best he can. We all are trying our best.
Sam Smiles Project
1 month ago