I really don’t know how often people have asked us what we do with our time. The amount of times we’ve answered the question as as innumerable. Apparently, we suck at answering because it always crops up, sometimes from the same exact parties after a span of several years.
I guess since we’ve arrived safely (and rather noisily if I’m to base this conclusion on the squeaking and cracking of bones that accompanies late-night trips to the bathroom or kitchen, getting up from the floor, and so forth) to what is called “middle age”, people expect the onslaught of everyday life to abate somewhat. We should, by all accounts, be either full-fledged empty-nesters or on the brink of this elevated status. We are not…either full-fledged or on the brink. It ain’t happening. Not no how… People probably have visions of Dada and I starring in some of those commercials where people “get in the mood” while doing dishes or go mountain biking after having their calcium supplements in a lactose-free shake. The idea that we have a youngest child who is, legally and chronologically, an adult gives everyone the impression that, somehow, the Autism Fairy has lifted the spell cast upon our family life and we’ve joined the ranks of “normal” couples.
Our day starts at 5 a.m. Dada crawls out of bed first, and showers. On his way down the stairs, he meets J who has to be fed and dressed by 6:15 at the latest so that he can be on the bus and on his way to school by 6:25 a.m. At 5:45 (a courtesy extended to me by a husband who knows hot-flashes wake me up frequently in seamless unison with a bladder that, after two children and many years, has decided to disrupt my much-needed rest) I join the parade and take over grooming and dressing duties, as well as J’s morning routine of I-love-yous and counting toes and kissing noses. (Hey, you do it your way, I do it mine.)
By 6:30 I’ve parked myself at the dining table where Dada and I have our coffee. If were actually eating something hot, it’s there…ready to go. At 6:45 Dada heads upstairs to get dressed, and I go to make our bed and finish my to-do list for the day. He doesn’t leave the house without me tying his tie and helping him gather all his things. By this time, TGG is up and about and heading out the door (pretty much in that 22 year-old guy tuck-and-roll fashion.) Everyone is where they’re supposed to be by no later than 7:40…
The rest of the day I cannot be as specific about because it all depends on what each of us has to do. Some days I have laundry to wash, soups to make, cookies and breads to bake, materials to prepare, buttons and seams and rips to repair, vacuuming, sweeping, mopping, bathrooms, and so forth. By the time that 1:30 rolls around, I need to sit down and prepare myself mentally for the rest of the day, and for J to be home and all that implies. At 2:30 I walk down to check the mail, I stop by the management office to talk to my friend (the manager,) and at 2:50 I am standing waiting for J’s bus to pull up. By the time we reach the door, I’ve heard the words NOODLES and SODA well over a hundred times, and I’ve managed to interject HOW WAS YOUR DAY several times in there. I mention to J the weather, what we’re doing when we get home, how excited I am to see him…
We are usually indoors and putting things away no later than 3:10. He is changing his clothes, getting his things from his bedroom to the TV room, and preparing snack after that. He also gathers laundry and brings it to the laundry room. At 3:40 he has his snack, and I’m telling him what we’re doing after that. We count between bites…that stretches his snack for another twenty minutes so that TGG is calling to say he’s on the way home as we put J’s dishes in the sink and he gets the kitchen straightened up. By the time TGG arrives at 4:20, I am downstairs because J has settled in and picked a book to read in the evening, and I’ve been banished to the living room. At 4:30 (if all is going as planned) Dada calls to say he’s on the way. I then go upstairs to start dinner, IF dinner is a simple, straight-forward affair; if it’s something more complex like lasagna or manicotti or shepherd’s pie, or tacos with fresh tortillas, it’s already going by the time he calls. Dada is home before five, and he changes his clothes (while J insistently points to his shoes and belt as they go up the stairs together) so he can come help in the kitchen. Once J has determined that Dada is changing clothes to “be home,” he joins me in the kitchen to help with whatever cooking prep is needed, and then he sets the table. Mind you, he knows how to set the table, but we still have to count how many utensils, plates, etc. will be used.
Dada comes downstairs and starts cleaning what I’ve been using, and J goes to the basement to wait until dinner is served. TGG is basically in his room, either changing for class or trying to relax after pushing gurneys and wheelchairs all day. Reluctantly, he drags himself downstairs after we call him four or five times to help with dinner, or to help J with laundry. Dinner is on the table by 5:30 and we sit down to eat, counting between bites as we go. When J is done we still have to remind him to put his chair back where it goes, and take his plates to the sink. When it’s his turn to help, he goes downstairs until we call him because we’re all done eating. We are usually downstairs by six-thirty; the kitchen is by then spotless, and we sit on the couch reading for a while; if Dada has to work, I sit on the couch and read while he sits at the desk. I go to J’s room and work on an isolated skill: a set of flash cards for vocabulary, counting beads, doing worksheets, safe signs, and so forth. Once I’m done with this, every fifteen or twenty minutes, I get up from the couch and, with J’s help, check the laundry. Throughout all this, of course, I’m explaining step-by-step what we’re doing, how we’re doing it, inserting vocabulary, asking J to repeat while enunciating more clearly, and adding the necessary ASL to the task…this is going on from the moment he gets off the bus…it doesn’t really stop. It happens during his shower, while he’s eating, while we’re doing dishes, cooking, washing clothes…you know this, of course…silly me!
At around 7:45, J and I work on one of his craft projects. At around 8:30 we fold laundry. At nine he takes his shower (and gets his shave.) By 9:30 we are reading a story. At ten, if he’s ready, we gather up his things (because ALL THINGS must be brought up and down each day) and go upstairs to put him to bed. By ten-thirty he has put away his laundry, cleared his PECS board, turned down his bed, and gone through his nightly routine of kissing and hugging everyone, making sure there are no cats in his room, singing “going on the yellow bus,” and saying the words YELLOW and BUS at least twenty times, even after we’ve closed the door and have started towards our bedroom. We don’t really fall asleep until 11 because we keep an ear out for any impromptu giggling (which means J has turned on his light and is sitting up in bed, and must be tucked in again…to the tune of YELLOW and BUS several times over,) and then we start over the next day.
Dada, of course, goes to work and faces all the challenges of trying to get a database for thousands of employees to run smoothly while still keeping up with the other tasks his job entails. And he’s got meetings, and a phone that rings constantly, and support requests via e-mail that he has to see to, and a boss, and a boss’s boss, and walks up to the HR Department at the hospital and people from the hospital coming down to his little corner in a room he shares with other employees. All this happens between 7:40 and 4:30, with a half-hour for lunch and hoping I don’t call him to say “J needs seeing to immediately.”
We also can factor into each day the following elements: doing the Wii, giving J his med, dealing with the minuscule details he gets hyper-focused on during grooming and dressing, or the little OCD routines about plugging in his electronics, cleaning his DVDs, accepting the fact that he cannot simply throw the cats outside, doing the recycling, organizing his snacks in his box, and so forth. Things that, of course, for a neuro-typical 18 year-old are not at all an issue. On a good day (a day with no phone calls from the school or mysterious outbursts of discontent over something we can’t immediately figure out,) things run more smoothly…seem a little easier. Maybe we’re just doing this to ourselves?
In hindsight, it doesn’t seem like we’re at all busy. I don’t even know if we’re really busy or if we’re just imagining it. Last night, after hearing my beloved husband trying to explain to his unmarried, childless, also middle-aged brother that our schedule is…interesting…I actually took the phone from him and said “HEY! What number could you count to when you were eighteen, dude?” Um…infinite, he said. “Well, we’re working on getting to thirty with J,” and I handed the phone back to Dada.
If that’s not explanation enough of how we’re busy…well…then I guess we’re not.