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 of Julys.
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 the world.
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 go.
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.
