Clouds, May 2010

Clouds, May 2010

Tuesday, April 2, 2013


Sometimes I wonder about the different circumstances which would tire a typical mom like me. One who, on paper, leads a comparable life & orchestrates a comparable schedule.

I imagine her being a working mother of one-- a son of course. Not a job which requires any travel... being married... maintaining upkeep of a similar home (at least a reasonable, minimal expected amount)... & having comparable resources available to her. By resources I mean everything from support, to money, to respite.

On paper, side-by-side... very similar. Perhaps even in the same respect as the attention she gives herself (or lack thereof).

Then I think about the things that tend to make me feel drained.
If for example, one morning your child decides they don't want to get on the school van. Nothing out of the ordinary that morning, no change in routine, no visible antecedent. But your son decides he does not want to sit, he does not want to be buckled in, & the real kicker: he also does not want to get out of the van.

But one of the above needs to happen or you will be late for work. And of course, he will be late for school. And if he's late, then when he does finally arrive at school, his routine will inevitably be slightly different. And this will set in a motion a completely off-balance day for him.

After at least 10 minutes of trying to keep your cool while your son kicks & shoves you, as you try to help him, & then not try to help him (in case he wants to do it himself), & then a few failed attempts of trying to engage the van driver... you realize this has gone on 9 minutes too long.

You remove his backpack from the van, & place it on your front walkway so you will have both hands & both arms free. You will need all of them.

You simultaneously curl one arm between his legs & the other around his torso. You drag him out like a ring fighter about to body-slam their opponent, except this is not your opponent. This is your son, the love of your life, your flesh & blood (& let's not forget genes), thrashing about & screaming & crying because he knows this is not what's supposed to happen. And worse, as much as he doesn't want this to happen he can not organize himself to the contrary.

And apparently, neither can you.

Fast-forward to the following day & imagine (again, for example) that you need to bring your child to work with you. Out of necessity, desperation, or a bit of both (pick one)... you have to get to the office for at least a couple of hours. With son in tow... because school is closed. 

He has been there before, at your office. He's sometimes hyper & his compliance is hit or miss... but usually with the right snacks & DVD playing in the computer the situation is manageable. He will still get up a million times & touch a million things, but for the most part you can get by for a little while. He knows his spot. He goes right to it: the empty desk behind you.

But as soon as he opens a desk drawer that had keys in it the last time, & today they're not there... you realize that today's length of compliance will be nearly non-existent. You also try to find the keys but you're certain you won't... because the keys are wherever the last person who had them, put them. And that person can't find them either.

Well with that, he's off. Thankfully, your very small office is virtually empty that day (partially) because it's Friday. At least one person is working remotely, or another is on vacation, or this one is sick, or that one is at the client... so on, & so forth. So as your child parades around with the gracefulness & speed of some sort of an orangutan-puppy hybrid, sloppily knocking things about but never once losing his balance, you make the mistake of thinking he's distracted enough that you can safely send something to the printer. Which, incidentally, is also a copier & your hybrid son also has an elephant memory. 

As your luck would have it before the machine can even output the first two pages, he has smelled his bacon. "COPIES!" he yells. The stack of blue bins which he was just constructing into some sort of recycling center, falls to the ground. He grabs the closest binder from on top of a filing cabinet & begins to tear out its pages & place them in the paper tray. You beg him to please leave it alone but you might as well be telling a teething baby to take a plastic chewy ring out of their mouth. So, having little choice, you turn off the copier machine & unplug it from the wall.

Without going into detail of what the rest of your visit was like, that Monday you're once again forced into a repeat-attempt of bringing your child to work. Duplicating Friday's luck, the lack of office attendance is possibly the only factor in your favor.

On this day your child remembers there's a manual sweeper in the corner, behind his friend, the copier. He grabs it & begins pushing it back & forth, & in every which direction with so much gusto that the handle comes off. Before you can react he lifts the rod high above his head & forcefully whacks it against a filing cabinet.

With an enormously loud clang the handle splits. With one piece still in his grasp, both of you fall silent following the hurled piece with your eyes until it lands a few feet from you... somehow miraculously missing every glass partition & light fixture in the immediate area.

The child smiles & thrusts his head back in a fit of laughter. A few seconds pass before you realize you're shaking, & you choke back your tears while you survey whatever else was left in his wrath. You start from the back of the office & work your way forward, retrieving semi-torn air cushions used for packing & shipping, a long trail of rubber bands, various pieces of blank paper-- some of them sloppily stapled together, many crumpled wads of clear tape, several empty dispensers, some envelopes, a few hole punchers, & a couple of industry magazines & office supply catalogs scattered about.

Next, you return all of the waste buckets & recycle bins to their appropriate cubicles & offices. Then you gather all of his things from "his" desk & shove them into the backpack... with much less care than how they arrived. Lastly, you ask him to put his jacket on. You're not sure whether or not he complies but it gets picked up & is somehow accounted for.

You manage to lead him out of the office space, but you remain on the other side of the glass door to set the alarm. When the door closes behind you, you fumble for the key to lock the bolt. Then you remember you left his iPad inside.

From the time the alarm is set, you have 30 seconds to close & lock that door before it goes off & the police are alerted. Meanwhile, you hear your son excitedly yell your name & something about the elevator so all you can do is scream back, "WAIT!", as you race against the timer to go back in the office & retrieve the stranded tablet.

Amongst all the commotion you're convinced the beeping intervals sound different, so you go to the keypad to stop the alarm & start all over again. Both elevators are dinging repeatedly & the child-like monkey is lunging back & forth between the two doors yelling your name amongst various other, more colorful words. You quickly pat yourself down to check for your car keys, cell phone, & other essentials & then grab your child by the back of his jacket & direct him away from the elevators. 

Your bladder suddenly reminds you, if you don't stop in the restroom you will undoubtedly have an accident on the way home. So you drag your son in there with you. You manage to relieve yourself faster than should be scientifically possible, & when you meet him at the sinks he looks like he just came out of the bath. Sopping wet from the elbows down, you carefully remove his shirt & instruct him to pull his undershirt down & leave it on. You pull his jacket over his clammy arms & zip it up. 

When you exit the restroom, luckily the stairwell door is almost immediately opposite. His hyper voice & deliberately-stomping footsteps echo all the way down to the first floor.

Once outside he scurries down the handicap ramp & then heads off in the complete opposite direction of your vehicle, which is literally only a few yards away. "Have fun, Mom!" he yells.

It is then that you realize you never shut the lights when you locked up the office.

I went to work by myself today. I mean, there were other coworkers back in the office but I didn't have my guest with me. During just a few short hours of uninterrupted focus, I not only finished everything from the last two days but re-checked what work I did get done just to make sure, & also plowed through whatever was new on my list for today.

Tuesday is currently one of the weekdays which my schedule is altered to accommodate Hayden, so I will go in for a certain amount of time & then log back on from home. And today, following my uninterrupted work, before I knew it it was about that time. I gathered my things to leave.

My boss had just returned from a late lunch & on my way out, I stopped by her office to ask her about something. My mind went blank for a second as I approached her doorway & spotted something dangling from the doorknob.

It was a long, dirty piece of tape with food crumbs stuck to the back of it & Hayden "written" all over it. I felt my face turn maroon, pulled the nasty strip from the doorknob, & shoved it in my jacket pocket.

During school hours, Hayden is on medicine. Due to logistics I don't even feel like getting into, a transdermal dose is the only form that has proven to be successful. So he wears a small patch on his back... which he anxiously reminds us to remove as soon as he gets home each day, but he tolerates it while he's at school.

It helps. Quite a bit.

We also have a special adhesive film which can be applied right over the patch, because initially he would contort himself & pick & pick & pick at it until he got the patch off.

This film makes that nearly impossible. As a matter of fact, I didn't even like using it because even during his bath I found it tough to remove. I believe it's designed & meant to cover dressings which need to be protected from water for days at a time.

Since Thursday, there has been zero medicine in him following at least two failed attempts to get that patch on. I tried myself, before work, Friday morning. I caught him off guard, told him I was just pulling his pants up in the back, & then quickly stuck the patch WITH FILM to his back.

Before we even left for the office he had gotten it off. I was sure that was an isolated incident & there is just no way he would have the fine motor control to ever do that again. I was sure I just must have placed it too low, & too easy in his reach.

So over the weekend we tried again. Hayden knew it was coming this time, so he was fighting me, but with Dan's help I was able to place it higher up on his back.

Later that morning we discovered Hayden had in fact, again, managed to remove it.

Yes I sometimes
wonder about the different circumstances which would mentally drain, & physically tire, another mom like me... A wife... A mother of one.

But yesterday afternoon I wondered if their breaking point would be sooner than mine. We were at home, it was hours since we returned from my office, & I was on my hands & knees cleaning up from Hayden's most recent meltdown... when I started to sob.

I couldn't even think anymore. I wanted to erase this visual chaos around me, I wanted my headache to go away, I wanted everything to be typical. Ordinary. Even boring. I didn't care. I just didn't want to feel what finally overcame me in that moment: sheer exhaustion.

The fact is, if you were to ask Hayden about the last few days he'd tell you that we went to my work, went to the bank, went to Shoprite, got two cars, saw the Easter bunny, got a doughnut, went to the diner with Dad, rode his buggie around outside, went to Aunt Dana's house for Easter, talked to Pop Z on the phone, had a mommy-&-Hayden day, had a daddy-&-Hayden day... & he would tell you all the things he did, not necessarily in the correct order, & not necessarily all-inclusive, but he certainly wouldn't say that his mom was crying.

I guess that's the reason why I was able to get out of bed today; Cook his breakfast, shower, get dressed, wear blue in support of World Autism Day, & even accessorize with a scarf & earrings; Go to work; Be productive.

Almost like everything is typical.


1 comment:

  1. Thanks for posting this. We used to blog about our Fragile X son, but have not done so for a few years now. But it helps to read about people who are going through similar things. I can't imagine how you can take your son with Fragile X to work and get anything done! I wish you all the best in your journey with your child.