I’m thinking, “Today was a typical day” as I stand looking over my 8-year-old drifting to sleep in his bed. It’s a hospital bed with a large zippered white mesh canopy that keeps him secured at night. Every evening we engage in a leisurely bath and stories, always the same three books, a kiss goodnight, prayers, and the final zipping in and locking of the bed. At this point his medication is usually taking effect and he is starting to dose, surrendering easily to his bedtime routine. With autism, we work hard to have every day be as typical as possible. Routines are tight and inflexible. Everything from food to the timing of movements is calculated to be the same, day after day. Without this structure the results can be disastrous, the pain for him intense.
I leave the room and go downstairs. I hear some moving around and wonder if he has woken. If I go back up to check and he sees me, he could be up for hours, screaming. If I ignore his moving around he will likely fall back to sleep, but there are other risks to not checking on him. I’m tired and err on the “leave it be” side. I move to my office and sit down at the computer to check e-mails and write. I listen periodically for noise, turn up the baby monitor and settle in to work.
I write for an hour or so, and then decide I had better check on him. Ascending the stairs, I pause halfway up and the smell hits me. Putrid and pervasive, I can guess what waits. I turn on the light and enter his room. He is naked; wound in his covers with feces smeared from head to toe. He is completely unconscious, the medication doing its job. The excrement looks like mud and he looks like a little Indian covered in war paint.
There are times when I encounter this scene and it pushes me to the edge. Even though I know this love of smearing is part of his sensory abnormality, expected in ways and the consequence of having left him unchecked for that hour of writing. I try to find avenues in my mind to reframe the experience, to make it okay, to let my love for him pervade, to maintain my balance and not go over the edge. But, there are nights when I am tired and coping is nearly impossible. None of this was part of the life I envisioned for “when I grew up.” I did not see myself as a single mother of three caring 24 / 7 for a child with a severe disability.
I leave him for a moment and go to run the bath. I return, unzip the canopy and wrap him in the sheets. He stays motionless, a large limp chocolate-covered rag doll. I carry him down the hall, unwrap him and lay him in the bath holding his head above the water. He will need to soak; the excrement is dry and caked, chunks in his hair and up his nose. If I am not careful to get every speck, they will send him home from school tomorrow; sometimes the lingering odor will incite the school nurse enough to request his removal, so I scrub. He groans and opens his eyes, rolls to his side, thinks he is sleeping. I tell him how much I love him.
The tears come, rolling over this dichotomy of pleasure and pain. So much love for this child and so little ability to understand the purpose of his life, or mine with him. My teenage daughter uttered her disgust as we passed in the hall. She closes her door, can’t deal. Should she have to? This is an odd life we live in service to his disability, his sensory needs, his autism. Autism literally reigns in our home, creating everything from our meals to our memories.
The scrubbing is now complete, so I rinse and rinse. The smell lingers and I know from experience that no amount of soap and water will eradicate it completely, only time.
I wrap him in a towel and carry him back down the hall to his room, snuggling him in a blanket and placing him on the “map of the world” rug on his floor. He sleeps. I then gather the soiled bedding and pajamas, and deposit then in the laundry chute. I get out the disinfectant and wipe down the plastic covering on the bed and canopy. I gather fresh linens and remake the bed, placing him in it and tucking him in for the night. Zipping the canopy and locking it closed, my task is almost complete. I go back to the bathroom and dispose of the remaining soiled bedding. I wash out and disinfect the tub and floor, change my clothes and call it a night.
I always feel at loose ends after the intensity of this clean up, as though I don’t remember what I might have done otherwise or what to do next. I wonder how long I will be able to do it at all. He is 60 lbs now and getting hard to carry. What will I do when he is a teenager? How will I lift him, how will I restrain him when he’s out of control? More tears. I know better than to project into the future.
I walk back down the hall and into his room. I stand looking over my 8-year-old sleeping contentedly in his bed. I think, “Today was a typical day, a good day.” I was able to maintain the routines, keep the transitions minimal, and thus his pain low. I leave the room carrying with me the endless sense of déjà vu that permeates my life. I have been here before. I will be here again.
Imagine with early intervention services like the EIDBI legislation how different things might be.
Dr. Sheryl Grassie
Executive Director, Minnesota Consortium for Citizens with Disabilities
The Minnesota Consortium for Citizens with Disabilities (MNCCD) is a broad based coalition
of advocacy and provider organizations working to change public policy to improve the lives of people with disabilities through building awareness, providing education and engaging the community.
1600 Broadway Street NE
Minneapolis, MN 55413