Apr 5, 2019
By: Jenny Noonan Dye
Jenny is a mother with kids of her own who recently became a stepmom to an adult child with Autism. She is a nationally acclaimed blogger and an experienced mom of a blended family with ten children. She shares interesting insight into living and thriving when faced with the unique challenges of an adult child with autism.
“Michael, row the boat ashore…” Do you know that song? This is the tune that starts my day.
Each morning my husband and I wake up to the sound of a pre-programmed song on a keyboard playing in a bedroom across the hall. Or, if we’re already awake, this is what gets us out of bed.
The song is usually, “Michael, Row The Boat Ashore.”
It’s not a precise alarm clock, but it is surprisingly reliable. Typically, we hear it a little before 7:00 a.m.
Getting out of bed, one of us crosses the hall and opens the door to find Andrew standing, arms folded, at his keyboard playing with the volume at full blast. He reaches over and turns down the volume. “Good morning, Andrew!” He doesn’t reply. We hand him his device, an iPhone which has been outside his bedroom while he slept, which he takes and sits back in his bed or on the floor. We gently close his door, and begin getting ready for our day.
Andrew has autism. Considered nonverbal, he does use the notes app on his device to communicate simple requests (“I want Arby’s”). He also uses it to listen to music, as well as record and rewatch clips of his life, whether they be car rides, interactions at home, or clips of movies he likes. He recites what he’s watching on the screen and listening to through his earbuds.
He is 23 years old.
Let me be clear: I am not Andrew’s mom. I am Andrews stepmom. I met Andrew when he was 20 years old. I didn’t know him when he got diagnosed at age two. I wasn’t in his life when it became clear he wasn’t taking to toilet training and would likely continue wearing diapers. I wasn’t around for any pre-teen/teen physical aggression or ramifications from his pica or any other of many significant milestones in his life.
Since I’ve known him, however, I’ve gotten to know him rather well. I’ve taken trips with him: 2 road trips from Salt Lake City to Montana, one road trip from Salt Lake City to St. George, Utah, a couple overnights in Park City, 1 flight to and from Long Beach, and another trip– with layovers– to and from Hawai’i. I’ve taken him on countless walks, errands, and trips to the park. I’ve cared for him when he’s been ill. He’s gone on many dates alongside his dad and me. And in the two years his dad and I have been married, I’ve done the day-in, day-out caring and work that a parent does for their special needs child.
In short: I’m relatively new to the Autism Parenting Community, and I know I’m still learning.
Before my husband leaves for work he says goodbye to Andrew. At around 8:20 I knock on his door and let him know it’s time to take a bath. Sometimes I need to remind him to set his device and headphones down, which he does. He then walks through our bedroom and into the master bathroom where he takes off his pants and throws his diaper (it’s called a brief, and is more like a pull-up than a diaper) into the trash can before taking off his shirt. He steps into the bathtub, turns the faucet handles, and engages the drain stopper. When the water has covered the tops of his feet he sits down.
While he is filling up the tub I go get his device and take it downstairs to the kitchen. On my way back up I stop in his room and grab a clean brief for him and bring it into the bathroom. I ask, “May I wash you?”
“Wash you,” he answers. He hands me the cup he’s holding, from which he’s likely been drinking bath water.
Sometimes we sing a song while I wash him. Sometimes singing involves my saying, “Alexa, play Wheels on the Bus.” Sometimes I ask him questions and he echoes back to me.
Most times, there’s hardly any talking. I try to catch his eye. I wonder what he’s thinking. More than any other time he and I regularly spend together, the time I bathe him is the time I most consider the relationship he and I have, and I wonder what he’s thinking, what he would say if he could, and my heart is filled for the opportunity I have to do what I’m doing.
I fill the cup and pour water on his hair and down his back. He’s typically very calm while in the bath. I put this combination shampoo/body wash, a blue gel, on his head and his back, and on his stomach. I also ask him if he will please wash his body. He holds out his hand and I squeeze some of the blue gel into his palm while I vocally direct, “Under your arms, please. And your legs and feet. And your belly.” He hastily touches the body parts I name while I wash his hair and back. Then I rinse the same way I began, with repeated cupfuls of warm water. I say, “Okay,” and he stands.
I hand him a towel and he dries his face, then stretches his arms over his head. He’s much taller than I am, but I do have the experience of a mom who needs to do things quickly, and he’s generally cooperative. It’s a routine, and I say what I’m doing while I’m doing it. “Let’s dry your hair. Now your arms, please.”
“Yes, one foot then the other foot,” I reply as I dry his foot and leg before he steps out onto the bath mat and I dry his other leg and foot. With both of his feet on the
To be continued…
Every April, Autism Speaks kicks off World Autism Month beginning with UN-sanctioned World Autism Day on April 2. This post is part of a series in partnership with Formerly Phread. For the month of April, Skywalker Trampolines is donating trampolines to families of individuals with ASD. To nominate a family or individual to receive a trampoline please click here.