Last night I heard a knock on the door. I went up to get it and found Sean standing there. He looked like a boy dipped in chocolate -- the white of his eyes life soft marshmallows peering up at me.
“What happened?” I asked, stifling laughter and holding the door close to me, not letting him run through and track wet mud all throughout the house.
“I fell into the water,” he said matter of factly. “I come in?”
“In a sec. Let me start the tub,” I said closing the door, pulling the knob, the hot water and steam pouring out of the tap and grabbing my camera.
Back at the door I asked him to stand still for a picture. He was slightly annoyed but complied and then I stripped off his wet, muddy pants and shoes and guided him toward the tub. The soapy water turned slick and dirty quickly, his body and face streaked with grime.
I shared the pictures with my husband and older son. They had been outside playing lacrosse as Sean hopped around the railroad ties near the shallow creek. Sometimes the creek swells but mostly it’s just a little stream running off from a slightly bigger creek. We laughed at the photos and I felt nostalgic for the old house where I was raised.
When I was growing up our house backed up to a cornfield (rotating crops of corn and soy.) There was a creek, too, filled with tadpoles and insects, a rusty bike and weeds. It was there we would find salamanders and capture them and bring them to keep in the rusty silver milk box in the front of the house. If I close my eyes I can see it all clearly. The muddy path to the creek, the sounds of dirt bikes, like angry wasps, buzzing in the distance and the stalks of corn dwarfing us as the mice scurried in the soil.
When Sean showed up at the front door I thought of my mother who let us run like feral cats in the field -- dirt and mud caked in our hair and fingernails. It took me back and made me thankful for having a mother who gave us freedom and space to grow. We were happiest there, the field stretched like an endless dream, lilac bushes, wild blackberries and the farmer’s crops spilling without corners or edges. And yet the backyard with the concrete patio and scattered baseball gloves and clothesline was always within view.
I helped Sean pick out pajamas, combed out his hair and went to scrubbing the tub, mud and pine needles circling the drain. He was squeaky clean, smelling of soap and apricot oil. He cuddled up in my lap, his arms and legs growing, spilling over me.
I have been struggling with him, our bodies tense and sore from swimming against the current. I’m trying now to let the waves carry me, to stop fighting the pull, to let it just be and see where it might take me and to just be okay with that. I’m realizing that maybe I don’t have as much say in this whole matter as I thought I once had. Now it’s time to stop walking into the wind but to let the wind be on my back instead.
My boy needs me to smile more, to not fight it so hard because he is tired, too. And not to think for one minute that he doesn’t have as much invested in this as I do. He is the one who has to live with it. I have to let him run, too, softening the borders, opening my heart and letting him stumble into the boy he needs to be regardless of how hard this can be to watch sometimes.
On a separate note, I have to give thanks to those who read my writing and who think of Sean and send warmness and goodness our way via kind thoughts and emails. In life it’s not about the square footage of the house or the car we drive or the size of the diamond. It’s really about the people in our lives, the relationships that keep us connected, that buoy us during the storms. It’s the mountains made from comforting shoulders of others who selflessly hold our words with sacredness and grace. And for the moment, that is all I want and need.
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.
While I was driving home from dropping off Sean at school I hit some unexpected traffic. The bright orange cones ahead alerting me to slow down and that the right lane was closing for construction. The sign 200 yards in front of the cone read:
“Roadwork Ahead. Expect Delays.”
The brake lights lit up the early morning, burning through a thin layer of fog and I put on my blinker to merge with traffic.
And then it hit me. You see, it has been a difficult past few weeks with Sean. He has been out of sync lately, making his small body disregulated and his actions completely impulsive. He also has been eating like a horse and sleeping longer than usual. My boy is growing. His brain and body are maturing and changing. His pants, which for most of the year, had been rolled up at the bottom to keep from dragging on the floor now brush above his ankles. His teeth have been falling out like leaves from trees during the fall. And his language has been expanding– more useful sentences being spoken.
There is work going on within my son. And with that progress comes some slow down – some delays. He is so sensitive to change that his body is reacting to it and sometimes the responses are frustrating and disheartening. But in order to smooth out the bumps, to help the traffic in his mind move more evenly and productively, other parts need to shut down and be put on hold. He is trying his best to cope.
So there I sat in traffic, my engine idling, and time ticking away, eating into my plans when I realized that maybe the same is true with Sean. Our life with Sean is dotted with peaks and valleys and right now, we feel like we are nearly crawling, our shoulders and knees pressing into a blinding wind, fighting the exhaustion. And our fear is that we will never be able to get through it and that Sean will remain frozen in the valley, no chance of climbing out, no clear sky above it all just the chaos of wind and dust.
I don’t give up hope though. I have been here before with him. Many sleepless nights and worried thoughts cluttering my mind, difficult conversations with my husband – our fears hung out like wet clothes on a line with no breeze in sight. And yet, slowly, he comes back to us – the tantrums lessening and his conversations more lucid. He is not gone to us forever.
But when he is in the valley, it is lonely for us. We miss his laughter and silliness and feel helpless watching him suffer. We try our best to dig deep down in the well of patience and give him tenderness to rest his tangled thoughts and weary head. As hard as it is for us, it is so much harder for him. We have to remind ourselves of this to keep our energy and love for him constant. If we can’t hold his pain then who will?
He is only a nine-year old boy who sometimes carries the weight of this world sqaurely on his shoulders. He just needs to be assured that it won't be like this forever.
Currently, I am fulfilling the duties of Mom. Before this role I used to write and read poetry at the Poetry Slams at the Green Mill in Chicago and other cafes in the city. I am trying to find my way back to that, trying to incorporate this journey that I am on with my love of words and poetry.
I have two great boys, an equally great husband and a fairly lazy, unenthused cat. Add to that, I have lots of good, creative friends (one that manages to get me to go to the Shakespeare fest in Ashland,OR every year!!) and wonderful parents and siblings.
I am trying to learn to live in the moment, to jump in without too much analyzing and thought. This is new to me as I have always been considered a "worry wart". Wish me luck.
What is the purpose of this study? The Simons Simplex Collection (SSC) is focused on families with just one child with autism, called simplex families, which will provide insight into the most common and unexplained form of autism. This comes at an exciting time in history, in which breakthroughs in gene mapping, advancement of high-tech tools, and the latest brain research present a unique opportunity for progress.
Whom should I contact to get more information? Emily Champoux, Project Coordinator Toll free: 1-800-994-9701 or 206-616-2889 Email: firstname.lastname@example.org Additional SSC information available at: http://depts.washington.edu/uwautism/research/simonssimplexproject.html