A Week in the Life

So now that we’ve made it to our metaphorical spring season, no longer in imminent danger of hospitalizations and ready to wake from our social hibernation, what does our daily life look like? A walkthrough of our week this week in particular may have you smacking your head alongside me at how every little thing can escalate to a near emergency when you have a child with extreme special needs, and you may also find yourself slapping your knee before we’re done.

Let’s see…Monday. I can barely remember that faraway day. So much has happened since then. We had an extremely rough start to our school week when Javan’s teacher came out for her alotted two hours that morning. I won’t go into the specific uglinesses that spewed from my child’s mouth, but I will say that it was enough that I wouldn’t even let him think about doing his schoolwork until he’d sincerely apologized, which of course took an inordinate amount of time.

Javan’s allowance is doled out based on his school performance. He can earn up to $2 each day his teacher comes out (twice a week) and $1 for each school day with me the other three days, making it possible to earn $7 a week. So when his teacher is here, he earns a quarter for each 15 minutes that he does his best work with his best attitude. When dad asks how school was today, we’ll often answer him with a money value,  i.e. “It was a $2 day!” Or “It was a $1 day.” Well, ya’ll, Monday was a 25 cent day. Twenty-five cents. Fifteen minutes of good work. Do you have any idea how agonizingly slow time passes when you are sitting at the kitchen table with a teacher, staring at your child’s untouched work for an hour and fourty-five minutes? Slooooooooowwwlyyyyy.

I’m pretty sure that was a day when Javan had slept only 5 hours the night before, an increasingly typical pattern. I can’t even remember if we got a nap that day, but at least my mom came to my rescue  that afternoon after receiving the following text from me: “Javan will have to lay down after lunch bc he had a bad school day. I’ll text you afterwards so you can come over if you want. (Please read as: Help! Save me!).” Moms are the best. We spent the evening dying each other’s hair, trying (and failing) to play games without glasses while the dye set, and watching West World while vegging on the couch after Javan went to bed.

Tuesday: another school day with the teacher. Here’s where my week gets a little too eventful. Approximately five minutes before her arrival time, my stomach decides to perform a lively rendition of its unique one act play, “Doomsday: The Bowel-ocalypse.” We live in a rural area. The teacher has a good drive to get here. I can’t in good conscience just say five minutes before she gets here, “Oh, can we possibly reschedule?” So I hang my head in shame as I text from my unadorned throne, “Well this is embarrassing. I’m kind of stuck in the bathroom. Can you please wait in your car until I wave you in.” Because it’s not like Javan can be trusted to just let her in and get to work nicely.

I finally wave her in, beet red and slightly sweaty, and attempt to get Javan to the table to work. 20 minutes later, as my son is in his room avoiding schoolwork, my stomach suddenly lurches to an internal microphone. “Now announcing, ‘Doomsday: The Bowel-ocalypse, A Survivor’s Tale.'” Apparently, the aforementioned play was in actuality not one act. This has just been a lengthy intermission and the entertainment will resume immediately. Did the lights just flicker?

I run to Javan’s room and tell him to just stay in there until Dad gets home, because, again, I can’t let him be alone with his teacher. Someone has to be there to control his behavior or at least provide a safety barrier if he loses control. Apologizing profusely, I run to my bathroom where I text my husband, “I’m sorry. Come home. My stomach is fixing to blow again.” Most romantic text ever. It’s a really, really good thing he works seven minutes away. And also a beautiful thing that naptime definitely happened that day, although I would have preferred that Javan not been up for the day at 2 a.m. in the first place.

Ah, Wednesday. A day that I will absolutely remember for as long as I live. The manchild finally made up for his past few impossibly early mornings by sleeping in until the blessed hour of 10 a.m. I decided that that called for us getting the car from my husband after lunch and going out on the town. I needed to shop for an outfit for an upcoming wedding. As a stay at home mom, my wardrobe is essentially bare of “nice” clothes. I own two dresses. One is too formal for most everything, and the other is my go-to dress for everything that requires a dress. There are two problems with said dress for the wedding though. One: I wore it to the bridal shower. And Two: I bought it many years ago and due to weight gain it’s now so uncomfortably tight in the Mountain Region that I need help getting out of it. I want to be able to sob openly at the wedding without busting any seams.

So we get the car for shopping and we drive it down to the Wally World to fill ‘er up with gas. I should have gone on to the next gas station when I saw how crowded this one was, but I’m a stickler for pinching my pennies and Wal-Mart gas is much cheaper in my area. Plus I wasn’t sure how long the fuel light had been on. I found a spot to fuel and realized why it was so crowded today. The credit card readers on all the pumps were down, so you had to go in to pay first. I never leave Javan in the car while I run in anywhere, but I’ve been consciously looking for small opportunities to let him exercise his independence and I’d parked at the pump right next to the gas station door, so I’d be able to see him and get to him quickly if he needed me. I locked the car, took my keys, and left him enjoying a sucker while I ran in. I paid for  $20 because I had no idea how much gas I’d need.

When I got back to the pump, Javan and I gave our thumbs up to say we were ok, and I began fueling. I put the handle latch on to automatically dispense the fuel until the $20 had been depleted. I guess the lady in the little red car parked behind me got impatient, so she backed up in a big U-shape around the gas station and to the pump on the other side. The person in the car that must have already been there began honking repeatedly and in response the lady in the red car rolled down her window and began shouting as she continued to back up. I’m incredibly concerned and distracted by this sideshow, but am pulled back to the moment when I hear the high pitched beeping of the machine saying it’s done fueling and the click of the automatic gas-makey lever on the handle shutting off.

I pull the nozzle out of my tank and much to my surprise and dismay it is still spraying gasoline full-force. All over the side of my SUV, all down the right side of my pants from the waste down and into both flip flops. I squeeze the handle to click off the lever and stand there holding the deactivated nozzle, senselessly repeating, “OH my God! What just happened?” The man at the pump in front of me kindly says, “I don’t know, but I saw it happen to someone else here just last week.” I look over at the pump, which says I’ve put $10.19 in my tank. I must have heard someone else’s pump that had finished, not my own.

Then I hear another man’s voice from somewhere to my left saying, “If that got on your feet you need to wash it off before it starts to burn you.” Burn me? Oh right, dangerous chemicals. I throw the nozzle back down in its slot, and scream, “HOW!?” The only thing I can think of to wash my feet with is the little squeegee thing for the windows, but I can’t find one. He helpfully says, “In the bathroom.” I kick off my flip flops in the parking lot and holler for Javan to get out of the car so we can find the bathroom. He can’t figure out how to get out of the car because I had locked it and taken out the keys. He just repeatedly pushes the unlock button and shouts, “It won’t open! I can’t! It won’t open!” I trudge back through the lake of gas on the driver’s side of the car and manually unlock the vehicle. He gets out.

We run through the tiny station to the other side, where the bathroom door is on the outside of the building, facing the pumps. At least it’s a large one-person bathroom, because I need to take Javan in there with me. He faces the wall as I peel off my soaked jeans and begin washing my legs in the sink. After I practically flood the bathroom, I look behind me and notice there’s a nice big water spigot with its own tiny foot tub and drain. I lather my pants up with hand soap and wash them in hot water from the spigot, wring them out, and put them back on. Oh, the burning! Why the burning? I find myself pantsless once again. It was apparent that I was going nowhere without help.

Once again, I call on my husband to save me. He had to borrow a car, go home and get me clothes, and return with them. We settle in for the long wait leaning against the bathroom walls as there is nowhere to sit. Just me in my panties and t-shirt and my 10 year old boy locked in a bathroom. Fun times.

When the fumes became overwhelming, I opened the door, which of course opened out, not in, so I couldn’t hide behind the door, and tossed my jeans out unto the parking lot. That helped significantly, but ten minutes later Javan began complaining of a headache. Ok, choices. I can keep him in the bathroom with the still-strong fumes burning through his brain cells or I can send him to the parking lot where there’s fresh air but I can’t be with him. I decided to let him leave the bathroom under the condition that he stay on the wall by the door. I cracked the door and checked on him every two minutes, which annoyed him to no end, but I gotta make sure he’s safe.

My knight in shining armor arrives with fresh clothes and a bag for the old ones, because we were still operating under the assumption that they, my favorite jeans and shirt, were salvageable. Turns out they weren’t, and after almost all of the bleach, vinegar, and detergent I have at my disposal, I’m not sure I haven’t ruined my washing machine as well. Also, I’m never fueling a vehicle again. Ever.

Thursday is homeschool park day. Our school for the day is being at the park and the expectations in order to earn his $1 for school are that he stay at least one hour and that he not be unkind. He doesn’t even have to be kind, per se. He can choose to ignore everyone and play by himself. He just can’t be unkind.

He spent most of his time sitting by the parking lot waiting for PawPaw to arrive and whisk us away to a lunch date and very little time actually riding his bike or playing. But still, he was in the sunshine tolerating other people. If tolerating others is the only social skills development we work on right now, still, there’s progress to be had there. Lunch with PawPaw went well as usual.

Afterwards, I thought we’d try dress shopping again. My husband had fueled the car, so that was not an obstacle. We went to Burlington, where I found several skirts and tops to try on as well as some lovely discount jewelry. As I browsed the clothes, Javan wandered the store, checking in at our meeting spot every few minutes. Usually, I insist he stay right with me, but he was in a good mood and, again, I saw an opportunity to let him practice his independence with relatively little risk.

Then I was ready to try things on in the dressing room. I showed him where I’d be, told him he could call to me if he needed me, and showed him where I’d meet him when I was done. It was the same meeting spot as before, very near the changing rooms. I tried on every combination of skirts and tops, which took quite some time and I was surprised he hadn’t called out to check on me for so long. When I finally did hear him ask, “Mom?,” I was on the last outfit. I told him I was nearly done and to hang tight for a minute.

When I opened the changing room door, I was rushed by a Javan-colored streak that charged into me with the full impact of his weight and summarily sobbed upon. “I looked in our meeting spot and you weren’t there and I ran all over every aisle looking for you until my feet felt swollen like watermelons and I couldn’t find you!” He wept for quite some time, despite my attempts to comfort him. We left without a dress. I’d borrow one from my mom.

Friday we had Javan’s pediatrician appointment that I’d made a few days before because he wouldn’t sleep, eat, or poop. I could have gotten him in earlier if we saw the nurse practitioner, but any changes like that are recipes for disaster so I waited until he could see the same doctor and nurse he always sees.

We had extra time after dropping Dad at work after lunch before the appointment, so we went to Wal-Mart so Javan could buy a toy with his $15 he’d saved up. When we walked in, I showed him the greeter and pointed out her vest and radio. We talked about how she was a person he could talk to if he ever needed help finding me. As we shopped, we practiced identifying workers as helpers. He bought a Transformers toy and we took off for the doctor.

Mind you, we’d been talking about and preparing him for this appointment since I’d made it days earlier, so I was dumbfounded when he asked, “Who’s watching me while you go to the doctor?” Child. No. I  calmly (I think) explained that it was in fact him that was going to the doctor. He did not respond well. I reiterated that there would be no needles or ouchy stuff. That’s how I can make him feel non-threatened enough that I can take him to the doctor by myself. If the doctor requests bloodwork or orders a shot, we would schedule another visit for that and Dad would need to accompany us.

We arrive at the office and the nurse gets his height and weight. He’s lost 20 pounds and gained an inch since we’d been there four months ago. The weight loss was due to taking him off much of his psychiatric medication and he is now at a healthy BMI. The nurse comments that his height is nearly off the chart at 5’1″. The nurse needs to “check his muscles” (blood pressure), but he refuses to get up on the examination table as long as “that toilet paper is on there” (the paper they always have on the tables to protect patients from germs). The nurse asks if she takes off the toilet paper will he get on the table, to which he agrees. He gives her the arm with the strongest muscles and his BP is fine.

The doctor comes in and attempts to strike up a conversation with Javan, but he completely ignores her. He very reluctantly lets her look in his ears and mouth and feel his tummy. She says there’s lots and lots of stool in there, but it’s not formed an impaction so we can just use a new laxative she gives us samples of.

She also needs a urine sample, something new and inconceivable for Javan. I get the cup and lid from the nurse and lead him into the bathroom. I’m all ready to proceed, but he looks at me like I’m crazy and asks, “Why are you in here?” I get kicked out as he assures me he can take care of this himself. Right. Independence. Got it.

I hear him lock the door after me and then an unthinkable sound comes from inside the bathroom…a stream hitting toilet water. “NO! JAVAN! PEE IN THE CUP, NOT THE TOILET! THE CUP!” I’m sure many giggles are being stifled throughout the office at my shouts. The sound stops and he says, “Oh, I almost forgot.” I just rest my head on the door and close my eyes as I hear him fill the cup. Then he burst out of the bathroom, running down the hallway toward the nurses station holding a full cup of urine. I’m horrified as he sets it down, dripping on the counter. The nurse, imperturbable, slips on some gloves and collects the sample. The urine checks out fine.

I am filled with gratitude and relief as I send my son off to spend the night with Grammy armed with a bag full of laxatives. Have I mentioned how moms are the best? The laxatives WORKED. I could see the difference in his stomach when I picked him up the next day after attending the wedding.

So far, the weekend has passed uneventfully. Javan’s appetite has increased some since surviving his own Bowel-ocalypse. And he slept nearly nine hours last night. Am I ready to do it all again as a new week starts tomorrow? No. But here we go anyway! I hope it’s a good week. For him, for us, for you. Let’s slay this week.


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