It’s all Fun and Games Till Someone Loses Their Mind

TWEET: How do you make every teacher and kid within a 50 mile radius happy at 5:30AM while simultaneously making every parent weep? SNOW DAY!!!

That’s how the day started. And life was fine…

Thing One headed back to his bedroom to pull up Google Earth, his newest obsession, while Thing Two took to the bathroom to set up today’s Lego universe, as seen through the eyes of a 10 year old, still in Pull-Up’s, slightly verbal autistic boy.

I amused myself on Twitter, joking around with a few friends about this and that and some such nonsense, including an upcoming trip to Las Vegas, that I will, in just a few hours, begin to think can't possibly come soon enough.

At exactly 11:32 AM, I was staring at the alarm clock on my bedside table and praying for something to happen. ANYTHING to shut him up. Thing Two, at that point, had spent an entire hour screaming in my ear, poking and cajoling me, physically and emotionally.

“Mommy, Jake, Jaxson, Grammy, Grammy’s car, seatbelt, Walmart Store, Lego Jungle, Singing Mickey, Gamestop, McDonalds. I wuv… Mommy, Jake, Jaxson, Grammy, Grammy’s car, seatbelt, Walmart store….”

On and on and on and on and on… repeating the same thing over and over and over until I found myself on my bed in the fetal position with my fingers jammed in my ears, eyes scrunched closed and humming loudly enough to get his voice out of my head.

For the first, let’s say, thirty minutes of this tiptoe through Hades, I would like a huge dollop of credit for the patience I was able to exhibit.

“No, honey. Not today. No store today.” I said it as many ways as I possibly could, very sweetly and calmly, interspersed with portions of time where I ignored him completely - going about my daily routine of laundry and dishes, with him trailing behind me as I continued to hope the broken record would finally skip to another song.

He was on a roll. It was as far from a “normal” tantrum as one can possibly get. Because I can’t reason with this child. He doesn’t “get” words of reason, with the possible exception of “NO!” which I finally screamed - having done everything else I could possibly do, starting with TRYING to reason with him - hoping it would be the one time he would understand - “Mommy can’t go to the store today. The roads are icy and even if they weren’t, Mommy doesn’t have enough money today… and even if I did, I’d have to use it to pay the phone bill, not buy you another set of Legos to add to your ever-expanding collection…”

Reason. Ha! The universe mocks.

I knock, knock, knock on his little head. Nothing’s getting thru. So I try ignoring him, closing myself in the bathroom until he breaks in to join me - because we don’t have locks on ANY of the interior doors in the house. Locks? Are you crazy? Two autistic kids live here. The last thing I need is to have to crowbar either one of them out of a room they’ve barricaded themselves into with a lighter and a four pack of generic toilet paper.

Okay, so Thing One wouldn’t do that, but that’s totally within Thing Two’s modus operandi.

So, I’m in the bathroom and he’s at my feet and he’s whining and crying and it only takes ten minutes of this sheer hell to realize that the acoustics in the bathroom - coupled with his hysteria and the decibel level of such - is not conducive to me retaining a sanity level that is greater than or equal to a sanity level necessary to keep me from being carted off to a padded room somewhere.

For a moment, I laugh - the horrible guffawing of the clinically insane - as my mouth waters for a few moments in that goddamned padded room. I bet it’s quiet in there… and at this point I’d take ten seconds of silence over a ten minute orgasm.

I flushed (at least I got something done while I was in there), stepped over Thing Two and escaped to my bed, where I burrowed under the covers. Unfortunately, he burrowed right along with me.

I tried the finger to lips, “Shhhh.” A gentle cue for him to SHUT THE HELL UP BEFORE MOMMY LOSES IT!!! - one I’m certain he understood. But, then come the tears. Tears in earnest, as if I’m torturing the kid because I won’t take him to Walmart. He doesn’t understand. He’s not getting it. And there’s not one goddamn thing I can do about it but ride the tsunami of dysfunction till he tires out or I have a stroke - whichever comes first.

And he’s poking me. Non-stop poking. This is not the hard, barbed, LISTEN TO ME poking at this point, but the very gentle, almost-a-tickle poking that says, “Please give me some attention because it seems, Mommy, that you’re not understanding my wants and needs and all I require is a little understanding.”

It is so sweet and so sad and so damned absurd… and if the little guy only understood that I completely understand his wants and needs, but his wants and needs, at this precise moment, juxtaposed against my particular wants and needs, seem to be at loggerheads.

I need him to stop touching me.
I need him to be quiet.
I need a cigarette - which I cannot have because I’ve recently quit - ironically, for my kids because if it were only me I had to worry about, I’d gladly smoke myself into an early grave while enjoying every menthol-y drag on my road to emphysema.

Poke, poke, tickle - he continues his non-stop refrain, quiet, soft and accompanied with tears, and it is worse than the screaming of earlier: “Mommy, Jake, Jaxson, Grammy, Grammy’s car, seatbelt, Walmart Store, Lego Jungle, Singing Mickey, Gamestop, McDonalds. I wuv… Mommy, Jake, Jaxson, Grammy, Grammy’s car, seatbelt, Walmart store….”

I lay there thinking about my flippant early-morning tweet and how the universe is a sarcastic bitch, (and how I could probably put this torturous situation to good use by inventing something similar as an effective form of torture for our government to employ on “enemy combatants”) when I start to laugh. It’s so over-the-top, having gone on almost two hours, so ridiculously, morbidly horrifying, that I’ve now reached that point where there’s nothing to do but laugh.

So I laugh, taking a brief few seconds to GROAN LOUDLY in frustration, then continue my hysterical laughter of the insane…

Then, it happens. Thing Two stops, the record skips to another song and suddenly he’s in the living room and I’m on the bed alone and I’m not quite sure how I got there, or what I did to make the bad thing stop, but it has stopped.

I close my eyes and do some yoga breathing I picked up somewhere, who the hell knows where because I’ve never done yoga in my life, and would most certainly risk pulling something vital like my aortic valve if I did.

When the coast seems clear, I tiptoe over to my computer and jot down this rant - which will never get properly edited because there are only so many hours in the day…

“Mom, look. Mom…”

Now, he’s at the computer, watching some Lego video on YouTube and pointing to something he wants me to help him build. I smile wanly and nod as he pulls the huge box of Legos into the living room.

Then, I sit down next to him, dreaming of a day, 79 days from now, when I will have four consecutive days to do whatever the hell I want to do …and I assure you, whatever happens in Vegas, it won’t include Legos or Walmart or me being screamed at or poked.

…and for 4 days, life will be fine.

Ten Minutes to Wapner

You’ve all probably seen Rain Man. Dustin Hoffman’s character was inspired by real-life autistic Kim Peek who could read eight books a day, taking ten seconds to read each page, devouring two pages simultaneously, his left eye reading the left page and his right eye reading the right one. He had an unbelievable memory and knowledge of rote facts. But, here’s the interesting conundrum: throughout his life he still needed 24-hour care. Despite his amazing mental agility, his motor skills were limited and he needed help with things like dressing himself and combing his hair.

The movie wasn’t necessarily a bad depiction of someone with autism, although neither of my kids can count toothpicks if they’re dropped on the floor, or perform other entertaining party tricks. And I’m here to tell you if they could count cards, I’d be the first one to hop on a plane to Vegas and figure out a way to exploit the situation to my financial advantage. But my kids aren’t savants. Most autistic people aren’t - only about 10% of people on the autism spectrum have savant skills.

So for that reason, the Hollywood portrait painted wasn’t entirely realistic with regard to most people on the autism spectrum. But it told an engaging story and illustrated some things rather well:

The Ten Minutes to Wapner thing was very realistic. I can hear Jake saying that, only it wouldn’t be about The People’s Court, it would probably involve Pokemon or Mario or some cartoon character on one of his shows. “Mom, it’s coming on in five minutes. Mom…only three more minutes, HURRY!”

Oh, Jesus, Mary and Joseph.

The movie also hit the nail on the head about things like having to eat specific foods a certain way, or requiring a certain brand of underwear, lest the wearer might, say, lose their shit (pun intended). Jake is a boxer kind of kid and he’ll go commando before putting on tightie-whities. If it’s a school day and I haven’t gotten to the laundry fast enough, obviously commando wouldn’t be an appropriate option. So, yeah - that would be a bad start to what presumably would be a bad day. Needless to say, I try and stay on top of the laundry situation in my house.

People on the autism spectrum are often restricted, rigid, and even obsessive in their behaviors, activities, and interests. When this rigidity is challenged, in the form of making changes to their rituals and structure, challenging behaviors (AKA: tantrums) may arise.

The thing to remember with autistic children is that the behavior is not on a vindictive or malicious level. They are not trying to blackmail you emotionally because what’s happening - from their perspective - has to do with them, not you. Autistic children are completely without guile. They have no understanding of concepts such as passive-aggression or manipulation. Autistic persons’ reactions are simply their reactions to whatever stimuli they’re being confronted with. Unlike some neuro-typical children, their actions are not a conscious way of getting something they want. In fact, they’re probably not even aware how their actions are affecting you. That’s something they often need to be taught along the way, rather than simply ‘getting it’ from your behavior, facial expression or body language.

For this reason alone, I wish everyone had a touch of autism.

Jake can’t lie. Seriously, he can’t tell a lie. It’s like a tic for him. He’ll get right in the car after school and give me a laundry list of every bad thing that he might have said, done, or encountered that day. He’s unable to move forward until he’s sure I’m completely aware of anything that might have been considered inappropriate. Then he feels better. If I ask him a direct question, even though he MIGHT try to keep something from me, he’s got absolutely no poker face, and the moment of silence is quickly followed by him coughing up the truth, however uncomfortable it makes him. This might very well be the coolest thing about him, from a parenting perspective. Well, that, and the fact that he can’t abide cursing, which he regularly calls me on, as well as fellow students. Yeah, I imagine that goes over really well with the ‘normal’ kids. (Actually I know it doesn’t because he was recently bullied for it.)

Just interacting socially can be draining for someone who can’t read facial expressions, isn’t verbal and doesn’t understand many things involved in social interaction, like reading body language. It’s like trying to get something from someone who is speaking another language. So pile that on top of any changes in the structure of their life and you should expect the guano to hit the oscillator, my friends.

Although their routines might seem strange to us, they serve a purpose to the autistic person. After all, routine itself isn’t necessarily a bad thing. I go grocery shopping on the same day of the week each week, simply because it’s convenient. If I wait longer I will run out of something. If I go earlier, I may have too much of certain items and then they go bad before I can use them. Ritual and routine help us feel secure and safe within our environment and makes the world around us more predictable. Too much unpredictability and uncertainty can lead to stress, more so with autistic people.

When these rituals and routines are interrupted or changed, the reaction you might get could well seem to be disproportionate, but you must remember that the autistic person who you are interacting with may have communication problems and doesn’t understand the reason for the disruption of their routine. Even Jake, who is a teenager and very verbal, is extremely literal. Try using things like sarcasm, irony, metaphor or pun on him and what you’ll get in return is a blank stare.

Jaxson and Jake both have issues with change. Jaxson, for instance, is unable to come into school and unpack his backpack and put his items into his locker like the other six children in his class, until his teacher comes out of the classroom and greets him in the hallway. He won’t let me leave until this happens. As soon as his teacher comes out and Jax sees her, I can leave. But if I try to leave him with his fellow students to unpack his backpack, he whines and pulls at me. It is how things went on the first day of kindergarten, so now if I try to change it up, he freaks out. This doesn’t bode well for the day - which is swiftly approaching - when he has a substitute teacher.

The ASD teachers want children to become more independent, thus tending to certain chores at school by themselves, without the aid of a paraprofessional or teacher. They need to be able to do things, like walk down the hall without holding the para-pro’s hand or change from their snow boots into sneakers in the winter, all by themselves.

This is all grand, but when something ‘new’ comes up - something out of their normal routine - this can throw an autistic child off, terribly. The way to try and change this is to regularly change-up their routine, at home and school. To toss them something unexpected and get them used to navigating change. Needless to say this isn’t always fun and so far I haven’t seen it actually work. You’re bucking their internal sense of order and it doesn’t go well. But as a parent, I still need to try, because life is messy and full of changes. The need for a detour often arises.

Shit happens.

But, try relating that concept to an autistic child and see how far you get.

I Hate School

(This is the back to school face.)

T-minus six days until my boys go back to school.

Next Tuesday is going to be rough. When you know there’s a good chance you’ll be physically dragging your 77 lb. child into school on the first day, and probably for many days thereafter, it makes it hard to rise to that giddy level of ‘Back To School’ elation that plagues the Wal-Mart and Staples commercials for two months every year.

In fact, those commercials aren’t even advertising the products I need.

“Now, for a limited time, when you order your HoverRound-Up™ - invented for the little second grade cherubs in our midst who have to be rolled into school like Hannibal Lecter - you’ll get the Mommy-Nerf®, squishy full body armor, available in sizes up to XXL. If your Lil Tyke punches, bites and kicks when they’re anxious, this product is for you!”

Perhaps I should start drawing up some prototype schematics.

Thing One and Thing Two hate school. (Try and look at that like a Seussical reference, not a totally inappropriate one.)

I’d like to say I’m one of those parents who is relieved when my kids go back to school - happy to enjoy a quiet house and do my chores before partaking of a few hours of uninterrupted writing time. This is not the case. I worry when they’re not with me. As soon as the alarm goes off on day one, up and until the last day of school, I spend most of my life waiting for the other shoe to drop in the form of a call from school. Either Thing Two is acting out and three para-pros have him pinned to the floor, or Thing One is obsessing about one of the fifty-two thousand things he obsesses about on a daily basis - like his penis falling off - and they can’t get him into class.

It’s heart-breaking, gut wrenching, toilet hugging stuff. The ‘I Just Dropped My Two Autistic Kids off at School Diet’ consists of lots of coffee and a fair amount of time on the john.

Yesterday, we (Mom and I) went to register the boys for school and Thing Two lost it before I could get him out of the car. He doesn’t even want to look at the elementary school building, never mind go in for five minutes while I fill out his forms. Because Thing Two is not very verbal, (but making great strides!) he can’t say: “Mom, I’m frightened and I don’t know how to deal with this.”

There is no ‘talking him thorough it.’

After the parking lot meltdown, the hallway meltdown and the library-slash-registration-holding area-meltdown, we got back into the car fairly unscathed, only to have Thing Two melt down while we waited in line at the middle school for Thing One to get his picture taken for his school ID card.

Mom remained with Thing One (who was also over-stimulated and stressed) while I cajoled Thing Two out to the car, a guerilla maneuver that ended with two sweaty, slightly mauled and out of breath people - one adult, one child.

God bless my little Thing Two. He’s terrified. And it’s not like I can say, “Okay, honey, just stay home with Mommy.” Man, that would make things easier. But, kids have to go to school and I fear if he can’t pull it together, there’s no telling where he’s going to end up. I want to make something better for him that is out of my control. So I round up the troops, talk to the psychologist and pediatrician, make a plan, and hope everything comes out in the wash.

Till then, my ass spends plenty of quality time on the toilet. Luckily I’m reading a good book.

But, then, there are other moments. These truly sweet gifts that make everything a little more okay than they were fifteen minutes earlier. In the evening, after the chaotic day, Thing Two had settled down and was giggling as he made his Buzz Lightyear fart on his Woody action figure - and, of course, filming the process with his video camera.

Thing One looked at his brother and said:

“Mom, he’s just trying to find his place in the world, isn’t he?” Sometimes Thing One says something so profound, I want to cry. And these little gems stand out because most of the time he’s saying things like:

“Mom, say stupid monkey butt fart.”

“No.”

“Say it!”

“Honey, please…”

“Mom, please, just say it!”

“Stupid monkey butt fart.”

Farts are the great equalizer in my house.