We are still in the storm. I am fighting the hopelessness of it all. I had thought by now we might have made it through to the other side -- basking in the sunshine after the long rains. Sean seemed to come out a bit but then tumbled back, taking our hearts with him.
I try to remember how hard it is for him to feel so unrooted and vulnerable. I struggle to keep my own frustration in check and to not add fuel to the existing fire. He is all over the place right now.
“Make better choices,” I tell him, almost pleading after reading a report from school.
“I will be good tomorrow,” he says, the doubt is heavy in his own eyes. “I will,” he says for good measure as if he says it enough it will happen. But then his eyes look scared and he says through a cry, “I am going to be bad tomorrow.”
“No,” I say, “you won’t. You’ll be good. You are good, Sean.”
His eyes lift up a little bit, “Everyone has bad days?” he says, his small voice desperate.
My desperation matches his, “Yes, everyone does.”
“Even you, Mommy?”
“Yes, absolutely Sean. I do have bad days, too.” More than I’d like to have really. Especially lately. I need to remember that he feeds off of my moods sometimes. If I’m feeling down and lost he picks up on it and he becomes harder to access, to get through to.
Lately, I find myself clutching my cell phone, fearful that I’ll leave it behind and will be unavailable for the school if I’m needed. But really, it has always been like this with Sean. When he was three I’d leave him at the little daycare at the fitness center. I’d begin my workout and not too soon after hear my name being paged over the intercom system,
“Katie Bevins please come down to the daycare.”
I’d have to go retrieve him. He’d be in the throws of a tantrum or shrinking in a time-out corner. I thought he’d grow out of it. I couldn’t imagine my life being like that forever. Right?
The cell phone, like the literary albatross around my neck, adrift in the sea, thirsty but surrounded by only salt water. I would become like the Ancient Mariner in the poem, “Water, water everywhere but not a drop to drink.” Argh.
I sometimes wonder if Sean gets better or if we just get better at living with autism. I don’t like to abandon hope, but in stretches like this, I sometimes wonder if I am fooling myself. If I need to keep this idea in my survival pack -- next to my waterproof matches and rain gear and pocket knife. Because without it the days might seem too long and dark.
Good friends remind me that I have been here before and that there is sunshine and hope waiting on the other side. Parents who have children like our son exchange war stories with me, commiserate and reassure us that peacefulness is within grasp.
So for now, I just need to keep swimming. Keep my head and heart strong and hope to feel land on my fingertips soon. He will come back to me. He always does.
Sam Smiles Project
3 months ago