AUTISM AWARENESS MONTH: DAY 18
Routines and rituals. Don’t we all have them? Under the best of circumstances, they can add order, meaning and beauty to our lives. For many people with autism, they go beyond that, offering comfort, safety, structure, and learning opportunities. Life with Bink is rich with these practices and observances, ranging from daily to weekly to monthly. Many of her practices are entirely her own, needing no interaction to complete. Some involve me and Super Guy. I enjoy some, tolerate others, but over time I’ve grown to appreciate their place in our offbeat life.
There is the morning wake up song, delivered at 7am sharp. Each day’s song is different, and though they are short little things, I make ‘em up on the spot. Recently, I heard her singing in the next room. It took me a few minutes to realize that she was singing the morning tunes I’d created through the years (and on the fly)! Insert shocked-face emoji here. They were probably in order, too—something she’d remember but I would not.
First, there is the dream journal, a wide ruled notebook set aside for just this purpose. Bink’s scrawled entries might be the thought that just entered her head, or perhaps they are indeed fragments of dreams. That’s a mystery, as it probably ought to be. She scribbles, and I read it aloud. Super Guy is an acceptable stand-in if I’m not available.
A short time later (but within fifteen minutes of her rising), there is a question or comment she texts me. (Bink is actually better with this than she is with face-to-face conversation.) She likes my response to be delivered via brief iPhone video. Sometimes, she asks a question about something current, like why we are not going on a vacation. More often, it is about something from her deep past. Example: “Why when I moved towards Miss S_______, Miss L_______ said sit down in a clementine cheese boy voice?” That might’ve happened ten or twelve years ago, folks, and I wasn’t with her when it occurred. It certainly does keep my creativity sharp coming up with answers to these!
DURING EACH DAY
There are the four household chores she’ll complete with wildly varying degrees of attention and accuracy. She marks each off with a check on her chore chart, a hand drawn thing we devised to help her learn the value of contributing to the household and earning money. There’s a choice of ten chores. Like any of us, she prefers some to others. The vacuum chore is perhaps the most challenging. Though she doesn’t have to do a lot of it to earn a check, there are many steps to the process. There is lugging the heavy vac from the broom closet, delivering it to the area that needs vacuuming, plugging it in, turning it on, and bringing the sweeper to an upright position. Then there is the requisite focus involved. She needs to first remember the purpose of vacuuming, and then to notice whether the random bits of guinea pig litter are actually gone after she moves the machine back and forth over them. Vacuuming is not a favorite task.
Other chore choices are more to her liking, including making her bed (an imprecise effort to turn the clumps of covers into a smooth layer, covering as much of the bed as possible), getting the mail from the mailbox, and helping to shop for food. Emptying the dishwasher used to be something she seemed to like, though that has been changing. Our not-very-old dishwasher has mysteriously failed to clean the food off the dishes about every third or fourth cycle. She hasn’t seemed to notice if there is food caked on the plates and the utensils, and though we oversee what she does, a few food encrusted utensils and a plate or two made it into our cabinets. Now, that chore has the added responsibility of looking to make sure the dishes are actually clean, which means we need to define clean vs. dirty and reinforce this every time. That’s an interesting thing about autism; there can be an extreme scatter of skills and understanding. Bink can often spell a word backwards, but shampooing her hair is an elusive task. She can remember the day, week and month someone said something to her that upset her, but she needs to have a rule to enforce attention to the actual cleanliness of the clean dishes.
Back to the chores list: she is such a rule-bound sort, and this means she is pretty obsessive about completing the chore chart. If daylight is waning and she hasn’t earned those four checks, she’ll tell us, with a certain urgency in her voice, that there needs to be another chore. Since she requires assistance with some tasks and oversight with all of them, on a busy day it can sometimes feel like a chore for all of us to get those checks recorded on her chart!
There is the daily recap, again in her scrawl, in a notebook designated for this purpose. The things she writes are almost always limited to what she ate during the day, and one memorable activity or outing. If someone has said something to her that she didn’t like, or in a tone she felt was harsh , that will make it’s way into the narrative as well. She wants me (or Super Guy) to read this aloud to her, but with no questions, please.
Next, after teeth are brushed and she is ready to get into bed, she wants an oral recap of what she did that day. She also wants to hear about what will happen the next day. This must include a reassurance that she’ll have a treat. ( Think tasty little snack, preferably sweet). There will be somewhere between five and fifteen nose binks and hair feels during this little ritual, depending on her anxiety level. This whole process has proved difficult when a caregiver was with her at bedtime, because she couldn’t know what had happened that day or what the next day would hold, so Bink accepts this good night ritual only from me. When I am not available, she just goes straight to bed.
Each Friday afternoon, Bink presents me with a list of ten questions that she wants me to answer. Here’s the catch: she wants them answered as if I was a different person (or thing!). On the list she specifies who or what I should channel when I answer.
This can be as straightforward as Questions for Ms. K________, answered by Mom the way she thinks Ms. K________ would answer them. It can be as obtuse as Questions for I Had a Little Overcoat sung by Raul Malo, answered by Mom the way she thinks I Had a Little Overcoat sung by Raul Malo would answer them. Yep, that’s a song, folks, and a specific version at that. And so I do my best to answer each question as I think that former teacher might answer them, or a particular version of a particular song might answer them, and I leave the completed questions and answers, typed up neatly, on the table the following Friday, so they’ll be there when she returns home from her day program. If she isn’t attending her program that Friday, she wants them to be on the table when she wakes up.
I have many, many lists of these answered questions in a file on my computer. Sometimes, there are multiple volumes of questions for the same person or thing. Forty two Volumes of questions for Miss E_______, for example, or twenty eight volumes of Questions for Old P_______________ Road basement.
Why do I do this? I’ve discovered, over the years, that she learns a great deal from these questions and answers. They help her begin to understand things from a different perspective, which is no small thing for someone with autism. Miss K_________, Miss E_______, and any number of others have perplexed her with their words and actions. They are no longer around for her to speak with, or if they are, they typically have neither the time nor the patience to answer these questions, especially when they are repetitive.
She doesn’t understand some of the things that happened in that old basement in that former house. Why were there toys stored down there? Why didn’t she play there more often? These things stay with her and can cause her a great deal of anxiety and discomfort. She wasn’t able to articulate most of her fears and curiosities when she was younger. Now she can express some of them, and her weekly inquiries are a tool that allows her to consider and absorb more about the world around her. Over time and after many, many repetitive questions and their answers, she is beginning to grasp concepts that you and I take utterly for granted. People are all different, for example. Sometimes, they get angry, or impatient, or sad. Songs can come in many versions and be sung by many different artists. Basements are places people store things.
Saturday night, there is the new chore chart we’ll put up on the refrigerator door, which is also when she receives her pay for completing the previous week’s duties.
There is the Sunday selection of a recipe that she will make with me or Super Guy. This is usually a stew or soup that she will take to her day program during the week for lunches. There is the grocery shopping to buy ingredients for it, and then the actual cooking.
On the last day of each month, her whiteboard calendar gets wiped clean, so it can be recreated for the coming month. Here, we list all the things we can know about in advance. Her activities, days off, and appointments are written out in erasable colored markers. This is an important thing for Bink, who is calmed by knowing what she can look forward to. It’s also an opportunity to review coping strategies, for those scary things like medical and dental appointments.
On the first of each month, there is the CD that Bink will make with Super Guy. This consists of ten songs that she will have preselected, and he will burn them onto a blank CD from iTunes. She’ll make artwork for the cover, and give it a creative name like Bumble of the Genevieve or Yellow Sunseed Girl. In the last few years, she’s favored titling these CDs with a female name and a fruit. Apple Cara, for example, or Cherry Dianne. We have dozens and dozens of these gems. The girl loves her music, and she will be able to sing a CD from memory, in order. When she is swinging in the backyard, she’ll generally be out there just as long as it takes for her to belt out a whole CD, and not a minute more.
There are other rituals that aren’t quite as prescribed. Upon eyeing a yellow car when we are driving, she will half yell/half sing the word Duck! The color of the vehicle must be just the right shade, though—not every yellow looks like a duck. Another car ritual involves her spotting a license plate with triple or quadruple numbers on it. They must be in a row, not divided on the plate. Then she’ll proclaim what she has seen. “ Triple eights!”, or, “ Quadruple fives!”. Interestingly, she is not saying these things to engage the driver, does not particularly care whether anyone responds. She just needs to blurt out her findings, and seems quite pleased with this.
Sometimes, well-meaning people have been critical of my parenting or of the ways Super Guy and I sustain these oddish practices. Some have implied that we coddle her too much, or that we oughtn’t acquiesce to routines that may seem childish.
There is a saying that goes something like this: When you’ve met one person with autism, you’ve met one person with autism. There is no one-size-fits-all description of a person on the spectrum. That said, all my experiences and understanding point to something universal: the world is a really confusing, challenging place for those who are wired differently. Things that you and I just naturally absorbed along the way and take quite for granted can seem foreign and nonsensical for Bink and others like her. She learns differently, in her own time, and repetition is key.
The rules that go with rituals and routines form a safe space for Bink. Within the comfort of the boundaries they provide, and with gentle and patient responses to her different ways of questioning, she is able to understand more about this confusing world.
Of course, Super Guy and I won’t be here forever to help her through things. We are here now, though, and we have a weighty responsibility to do everything we can to prepare her for eventual life without us. Our rituals and routines, rather than holding her back, have been an important part of her successes. They can change over time, as she changes. Eventually, the rituals may well be things she alone participates in, to calm and ground her. I find no negative in holding on to a coping skill that harms none. The more she understands about the world around her and the people who populate it, the better her chances for a meaningful, safe and comfortable life. That’s what we want for her. She deserves nothing less.
I read and re-read this blog, your strength and suppleness as you navigate each day, month and year reminds me of a story I read by Albert Camus once. I really like reading this piece because the strength and acceptance are sisyphean to me.
I thought of you today and Bink, Super Guy and your mother.
I had a visit from my mother and sister who was working nearby. They asked me to send their regards!!
Thank you so much, Lauren! I’m so grateful to you for reading, and thanks for sending those regards!