A Day in the Life

Prompted by my dear Karla Black, who asked: What is your typical day?

Our day starts precisely when Gabriel decides it should. He is our rooster of sorts, for whatever time he has deemed appropriate on that particular day is when he--and consequently the family--rises.

If his tablet is within reach, he will turn on his shows at maximum volume (so that every family member may enjoy) and wander up and down the main hall of the house, laying down with each of us in turn until we all resign ourselves to being up for the morning. This usually occurs somewhere between the hours of midnight and 6 am.

If Michael or I has had the foresight to plug in the iPad the night before, Gabriel assesses his immediate needs. Is he hungry or thirsty? Then his first stop becomes the kitchen, where he jimmies the lock on the fridge or hulks the door off the cabinet in order to obtain something appetizing; this (if he is able to open on his own), he dumps the entirety to the kitchen floor, eating perhaps 1/18th and smashing the rest beneath foot. Should the tantalizing treat be too tricky to open unassisted, he brings it to his somnolent parents and throws it atop us, repeating as often as necessary to achieve desired results.

When urination is his first and primary concern, he will lay down next to his father, nestle close beneath his arm, and let loose the golden rinse (the outcome with mom on similar treatment has been met with angst and ire, prompting young Gabriel to avoid her for this particular need).

Mostly however, he will lay between Mom and Dad and spin and cackle like a drunk witch performing broomstick-barrel rolls.

Michael and I are then grudgingly up for the day.

On a typical summer day--let’s say it is a Monday, as our schedule is fairly static at this point but differs from day to day--I will go wake the remaining two rather grumpy children at around 7 and instruct them to dress before I go to the kitchen to start making breakfast. Dressing is an activity I do not have to oversee for them because I have simplified the process: on every hanger in their closet, there is an outfit complete with shirt and matching pants.

After changing Gabriel’s diaper, Michael will prep the dose, dissolving a risperidone pill in a small amount of soda/juice/gatorade, really whatever we have on hand. Risperidone is an antipsychotic that helps control the extremes of autistic behavior. Michael then goes to do his morning routine.

Breakfast nearly ready, I call for the kids to wash their face and hands and for Emerald to do her finger poke--it tells us where her blood sugar is at. She tells me her number and calculates how much insulin she will need to give herself to cover her blood glucose. I tell her how many units she needs to cover her meal, which she adds to her number, and administers her fast-acting insulin, Novalog. (For example, she gets 1 unit of novalog for every 50 over 150 that her blood sugar is,  up to 5 units; if her blood sugar is below 150, she receives no insulin for that portion. She also gets 1 unit for every 20 carbs she eats. Say her number is 150 and her meal was 60 carbs; she would give herself 1 for her blood sugar and 3 for her meal for a total of 4 units of insulin before breakfast.)

Michael meanwhile has gotten ready for the day, so he dresses Gabriel and administers the dose of Risperidone combined with Quillivant, a medication used for ADHD, while I make plates. The kids file into the kitchen to pick up their breakfasts. If we have nowhere to be first thing in the morning, we take our breakfast picnic style in the backyard while it is cooler. This week, we actually had food camp for Gabriel so we let the kids eat alone at the kitchen table while I get ready to go.

But food camp is not every day, so back to our regularly scheduled Monday.

Daddy kisses everyone goodbye and heads off to work while we sit in the sun and enjoy our meal. I spend the next hour cajoling, coaxing, and convincing the children that fresh air and exercise is good for them while they lay in the grass and complain that it is too hot and that they want to go inside, their legs are tired and why can’t they play with the hose.

Upon returning to the house, they begin the chorus of “why don’t we ever go anywhere or do anything fun?”

This is our cleaning time. I send Emerald and Benjamin to picking up toys, putting laundry in the baskets, and putting away their belongings from the main rooms of the house. I will occupy myself with laundry or dishes, stopping every few minutes to check on my sweet little ducklings, who are happily singing as they joyously and lovingly put away their belongings.

Right. In truth they are laying half draped off their beds, bemoaning their difficult lot in life, cursing the cruel fates that have stuck them with such a meddlesome mother, and emphasizing how exhausted they are from the undue burden I have placed upon them.

The house (passably) clean, I send the kids to play while I try and get work done for REACH. Depending on how much I have going on, I may have to skip the cleaning that day and just focus on getting as much done as possible. Currently, I am corresponding with local agencies to get informational brochures and flyers for the resource packet I am assembling.

Depending on the weekday is which therapist we see. Mondays and Wednesday is Speech; our sweet Speech Language Pathologist (SLP) comes and attempts for a half an hour to teach Gabriel functional language while the siblings desperately vie for her attention. (And let’s be honest, I am, too.)

Lunch time, Michael generally comes home from work. To maximize his time here, I usually have something prepared and ready to go when he walks in the door. Emerald does her song and dance routine of diabetes again with the fingerpoke and the insulin shot and everything. Either Michael or I prepares the second dose of the day, a risperidone and clonidine. Clonidine is a blood pressure medication that helps Gabe sleep.

Gabriel has not yet learned to sit down during mealtimes, preferring instead to wander the length of the house. He will use his entire fist to scrape a handful of food off of his plate (thankfully, he is not a particularly picky eater) and attempt to transfer as much as he can into his mouth. A significant portion ends up on the floor, walls, furniture, and his person; he requires a full bath after most meals.

Possession is also a concept that is beyond him, making it difficult to identify which food is “his” and “not his”. Whichever plate is closest is the one he will remove food from. We have progressed to the point where he will primarily steal from Benjamin exclusively, Mom and Dad being persons you do not cross and Emerald having developed impressive protective skills. This causes great consternation to our youngest, who will scream, cry, stomp his feet, and holler “NO GABY!” approximately ten thousand times per meal.

One trait of autism can be “dumping”, where the child upends containers to spill the contents about. Gabriel is a devout practitioner of this particular custom, letting us know that he is finished with his beverage by pouring it to the floor and throwing the cup atop it. His food likewise will be upturned onto the table and spread about for maximum coverage.

While one parent cleans up Gabriel and sets him up with his tablet, the other lets the dogs in to clean up the mess. Depending on what we ate, there is a fairly significant amount that did not end up consumed. Everything has to be cleaned and wiped down before it sets in and becomes a total pain to scrub off.

Michael heads back to work and I lay the kids down for nap. This quiet time is really mostly for me--I need a few minutes to reboot, have quiet thoughts and recenter myself before facing an afternoon with the gremlins. During this time, I may write or start prep for dinner, do laundry or dishes. If it has been a particularly hard day or we were woken particularly early, I may play a video game, read a book, or take a nap. This is a very good time.

Nap time can’t last forever (no matter how much I want it to) and we head outside for snack. During the summer, it is often popsicles because of the low sugar content and how refreshing it is. If I am feeling particularly amiable, I let the kids put on their swimsuits and play with water guns, water balloons, or the sprinkler in the backyard.

Dinner on Monday has to be fairly prompt a little after 5 so that Michael can take Gabriel out to Buffalo Gap for therapeutic riding. The kids are banished to play, read, or quietly engage themselves while I cook. Gabe’s third risperidone is prepping on the fridge.

Emerald does her third fingerpoke and shot of the day, we repeat the chaotic food flurry from lunch ending in the same mess, letting the dogs in and cleaning Gabriel, wiping everything down.

Buffalo Gap is around 25 minutes away from our house, depending on traffic and the route you take, so Michael leaves with Gabriel at around 6.30. If they have been exceptionally good that day, Emerald or Benjamin might get to go as well, but I like to use this as Gaby/Daddy time.

While they are gone, Emerald and Benjamin get baths. Benny is still in the phase where he hates to get his face wet; it is a lot like bathing a cat, him clawing to get out and you trying to wash whatever you can reach and atttempting to keep the howling child in the water.

Kids ensconced in pajamas on the couch, we cuddle and watch cartoons and wait for the rest of the family to come back home. I have got Gaby’s last dose of the day--two clonidine--cooking on the top of the fridge so we can administer it as soon as he walks through the door. After bath, Emerald did her final finger poke and shot of the day, this time the long acting insulin Lantus. That amount stays the same every day, regardless of her blood sugar--9 units, every night at 7.30.

Michael walks back through the door, sweaty and exhausted. Gabriel is considerably calmer than when he left. He gets his dose, and the four of us--me, Mike, Emerald, and Benjamin--trudge off to the back room to all put away the laundry I have been folding all day. Emerald makes the beds that Gabe has pulled the sheets off of, Ben hangs up things for me and puts them in drawers. (Or, more likely, throws them on the floor where I can pick them up and wash them again the very next day).

Gabriel’s sleepy time medicine takes an inconsistent amount of time--it could be an hour, it could never kick in and he just powers through it. The latter is becoming less common; he usually has to be pretty worked up to burn through the dose, and we have gotten pretty good at keeping him calm.

Perfect world, he takes the dose at 8 when he gets back from his horseback riding and falls asleep around 9-9.30. Clonidine seems to make him thirsty, and he’ll drink 4 or 5 cups of water before falling asleep. We have to be careful and change him before he gets too drowsy or he will pee out while he is sleeping or wake up when we change him and never calm back down.

But perfect world, so he is asleep at 9. The other kids have been sent to bed at 8.30, so Michael and I get to snuggle on the couch and fight over the xbox. He lets me win, and watches me play Fallout 4 until I start falling asleep on his shoulder around 9.30 or 10.

I kiss him goodnight and go lay down, knowing the next day will start anywhere in between 2 and 8 hours.

--Andie