The Problem with Pragmatics

Pragmatic, or social, speech is a problem for Gus, and this is pretty typical of individuals on the autism spectrum. No big news there. Because of his difficulty in grasping the different connotations of words and because of his very literal mind, I now have a child who is terrified of Tootsie Rolls. Honestly I don't know how we got there, but there we are.

It all started two days ago. We have a prize box where the kids can pick prizes from when they received enough stars on their charts for good behavior. Any manner of thing can end up in that box, such as the Tootsie Roll push light that someone had given Gus at the end of last school year that had ended up in a cabinet. So Gus chose the light for his prize and I thought all was well.

That night, he asked, "What's a Tootsie Roll?"

"It's a candy."

"Is it good for you?"

"Well, no. Candy isn't really good for you."

I should have seen the slope getting slippery, but it was late and I just wanted to get his brushing and compressions done. When he asked what would happen, I should have thought longer before I spoke.

"Well, too much candy can make you sick and it can give you cavities."

Isn't this a typical response about the evils of candy? Ah, but I'm not dealing with a typical child, am I?

"If I eat a Tootsie Roll, I'll get sick." The bottom lip started to quiver, the eyes started to water, the breath started to hitch. Within a second, he was full out crying. Stupid mommy. "I'm gonna diiiiiie!"

Of course all my attempts at damage control were pointless because once he latches onto something with that wonderful perseveration of his, it's all over. But I had to try.

"You won't die from eating a Tootsie Roll. I said that if you eat too many you might get a tummy ache or cavities. You won't die from those."

"I'm gonna get sick and die!"

I tried everything - even making funny faces to snap him out of it. Finally, the faces somewhat worked. He told, through sniffles, that he didn't want to be copied. We were saved from a major meltdown because of my extraordinary facial control.

I thought the drama was done, and obviously I'm still a stupid mommy.

We went through almost an identical scenario tonight, except this time I didn't let it go on so long. For one thing, my patience was much shorter tonight. Finally, I asked, "Do you want a Tootsie Roll? Is that it?"

"No! I'll get sick!"

"You won't get sick. Do you want a Tootsie Roll?"

"If someone gives me a Tootsie Roll, I'll get sick!"

"Did someone give you a Tootsie Roll?"

"No."

Now I was wondering if there was some talk of stranger danger or something going on at school to bring this up.

"No one's going to give you a Tootsie Roll."

"But if they put it in my mouth I have to spit it out or I'll get sick."

"Okay." I didn't have the energy to debate it any more. It was bad of me, I'm sure. But thankfully, he let it drop and he went to bed. No tears tonight over the candy.

Then I just had to console him over the Pirate story he asked me to read that set him to tears. I can do nothing right this week, apparently.

Grass is always greener

I know that most people with children on the spectrum would love nothing more than to have their children speaking. And honestly, I wouldn't want Gus to not speak because then I'd miss the wacky jokes and hilarious observations he makes. However...

There's always a 'but,' isn't there?

I don't know if he's doing it more, or if my nerves are just more sensitive than normal, but the constant noises and chatter are driving me batty. Almost from the minute he walks in from school until the time he falls asleep, there is a constant stream of sound coming from this boy. It's often accompanied by running through the house (like he is now). There is literally a cacophony: words, words, words, engine revving noise, earsplitting scream, engine revving, words, words, maniacal laughter, words, scream, engine...on and on. And by the way, the words are either unrelated to each other or are slightly varied repetitions of each other. Here's a for instance: I would like a chicken sandwich...I would like a macaroni sandwich...I would like a peanut butter sandwich...I would like a naked mole-rat sandwich...I would like a knuckle sandwich...I would like a trampoline sandwich...

Sometimes I can tune all the sounds out - I have to because noise is a bit of a sensitivity for me. To much of it makes me nuts. It helps in a way because I'm able to really empathize with him when certain sounds are upsetting him. But at times when I am trying to get him to focus, like when we are doing homework or eating dinner (or when I'm trying to explain to him why he can't put the chair upside down on the stairs and he's ignoring me) it's extremely frustrating to have him just droning on constantly.

Heaven help me when MM decides to chime in and rev him up even more. Then we get a situation like the other night when I finally just screamed, "Why do I bother to say anything in here?" I really just wanted to get through dinner. I don't feel too badly about yelling - I don't think anyone heard me.

My life is a comedy of errors

Let me preface this by saying that in all the time my son has been in school - several years - I have never had to have my emergency contacts contacted. Ever.

This morning Gus woke up and sounded like he was wheezing slightly. He's had a cough for a few days. Nothing major - he gets one every year around this time. So as usual, I sent him to school & asked the teacher to let me know if he was in fact wheezing. I planned to take him to the doctor after school.

Now, I've arranged my schedule so I am only working 1 morning during the week, and my classes are only 90 minutes long. I typically turn my cell phone off during class - it's yoga and kind of expected. I pretty much figure - what could happen in an hour and a half. Plus, the school has the studio number anyway. To top that off, my husband was home sick today. You already see where this is going, right?

My class ends at 10:30; school calls my cell at 10:00. They call 4 times. They call the house; DH is out getting his car inspected. For some unknown reason, I neglected to give the school his cell number. They also tried the studio, but my boss, who was there, didn't answer the phone. Er...okaaaay. Now we're into the emergency numbers. Obviously, we are neglectful parents.

First emergency contact just misses the call by minutes. Probably out emptying the garbage or something. As she is trying to call back (and getting busy signals) the school gets the second contact, who is also home sick, with a 3 year old. She leaves to pick up Gus while first contact finally gets through. She is now worried why no one can reach me.

Right after class, I get the messages and call the school. After several busy signals, I finally reach the social worker and find out that someone (she doesn't know who specifically) is on their way to get my son.

After ripping several hairs from my poor, distressed head, I finally pick up Gus from my cousin, take him to the doctor and guess what??

He's FINE!!!

He's got a cough.

Yeah, yeah, protocol, blah blah.

A bit stressful today. But I've learned my lesson - the ringer on my phone stays on, period.

Blind leading the blind

"Which way is right?"

This is not the question to ask someone who routinely mixes up lefts and rights, especially when facing said directionally-challenged person.

I'm not totally incompetent about lefts and rights. The problem is that when I teach yoga, as I was taught, I mirror the class. So, I have to say "right," but use my left hand or leg and vice versa. It is a constant source of amusement for my students and bemusement for me. It's particularly interesting when one part of the body is going one way and another is going the other way, like when we're twisting. I'll admit, when it comes to twisting, I cheat.

"Um..."

Gus was trying to engage me in his game and I wanted to respond, but the explanation was too long and he would have lost interest if I made it too complicated. So how could I explain that it depends which way is right? Did he mean my right or his right? Should I have even gotten into all of that? The easiest thing would have been to tell him his right, which was actually my left. What did he care about my right? Why couldn't he just have asked for north, south, east or west? Those are fixed directions and I have them memorized in relation to our house. There's no ambiguity there. Hm...his right would have been north and my right would have been south...

This whole rationale spun my brain right into a knot.

Apparently I took too long to answer; he lost interest. But then, miracle Sunday, he came back! And he snuggled his back against me. "Which way is right?" Easy-peasy, my friend.

"It's that way."

No rest for the weary

A squeal. Thump-thump-thump. A ghostly figure standing in my doorway. I roll over to check the clock; it reads 12:30. Shit. I sit up. With no invitation needed, he shambles across the room and climbs into the bed.

A slight whimper. Did he have a nightmare? A cough. Maybe his allergies are bothering him. I have no idea why he's woken up, nor do I particularly want to at the moment. It is not the appropriate time to ask questions I won't get answers to. My eyes can't possible stay open another second. I snuggle a bit and pray that maybe tonight will be different, and he'll go back to sleep. Mothers seem to have a unique wellspring of hope, or perhaps are just good at denial. In any case, I cross my fingers and toes, and close my eyes.

Humming. Please, no.

Leg shaking. No, please, no!

He starts talking to the darkness. Sorry babe, no sleep for you tonight.

My husband takes Gus back to his room and tries to get him back to sleep in there. I can still hear him, through two closed doors. What can anyone possibly have to talk about at this hour in the pitch blackness?

I remember the advisory letter that came home from school about the child who had a man following her and the white unmarked van he was driving. These thoughts are not helping my cause in the least.

I finally give up trying to sleep, get out of bed, grab my laptop and a book and make a half-hearted attempt at doing something constructive. It is now 1:30 and he's still going strong. Bless my daughter's ability to sleep through the noise. Dear husband isn't faring as well as he usually does, and I feel badly about that.

Only one person is online and not someone I particularly want to chat with, but it's better than thinking about predators and abductions. The laptop gets too hot on my legs, so I switch to reading Wuthering Heights. It's not enough to hold my attention and this is a good thing. Maybe now I can go back to sleep. With a click, the lamp is off and I lay my head down.

I desperately try to ignore the muted voices coming from down the hall. Anger is starting to prickle beneath my skin. Enough is enough. I go to rescue hubby and scold Gus. If he wants to stay up all night, fine, but we need to sleep, so be quiet already. There really isn't much patience to be had at 2:30 in the morning. With a hug and a kiss we leave the room, wondering if he will stay put or follow.

Now neither of us can sleep, and Gus is still delivering his dissertation. Finally somewhere around 3, everyone drops off. But not to worry, one alarm is set for 5:00 - we won't sleep too long. That one is violently silenced. The next one sounds at 5:30. I don't even recall hearing it. I wake to the sounds of Dear Husband showering and preparing for work.

Gus has school today, so I must drag myself out of bed - no voice, no balance, no working brain cells - and then try to rouse the little host with the most. He has the nerve to ask for another 8 minutes. "Sorry, buddy. If you want to sleep, you should try doing it at night with the rest of us."

What the frack?

The universe is just filled with irony. I'm pretty convinced that God/Goddess (or whatever your name for that all-powerful deity/energy is) has a kind of twisted sense of humor. My rationale for this is if God/Goddess is in everything, and Black Comedy (as a genre) exists, then God/Goddess must also be present in Black Comedy. It's just His/Her little funny.



I took Gus to the geneticist today. Almost all the preliminary test they ran were negative or inconclusive. But they did turn up with the damnedest thing: his cholesterol is high. What? Now if I had a kid who ate like the majority of the kids in this country, existing on McDonald's and all manner of unhealthy, yet fun, swill, I wouldn't be so shocked. But then there would be no irony in my life and where would the fun be in that? He's on an all natural food, low sugar, very healthy almost to the extreme, diet. But he has high cholesterol. He doesn't even drink whole milk for heaven's sake! Only low fat for this kid. Are you kidding me? Can you head the wood of my desk splintering from the repeated head bashing I'm doing at the moment?



So we have to undergo yet more dietary changes. And as if it weren't funny enough, our choices are to start eating low fat everything else that isn't already. But those things tend to have either higher sugar or salt contents (diabetes or high blood pressure, anyone?) and tons of additives and preservatives. Or we can stick to the more expensive natural food, low sugar diet and keep the high cholesterol. I'm being partially facetious - I'm sure there's a happy medium, but right now it doesn't feel like there is. Right now I feel like no matter what the hell we do there's just no winning.



Of course, no cake is complete without the icing.



One of my worst fears has always been that one of my kids would get burnt with hot water from tea or coffee. This stems from having to take my ex-boyfriend's toddler son to the hospital because his crackhead grandmother left her tea at the edge of the table. The child had third degree burns over most of the front of his body, including his penis, and the skin had to be peeled away so they could dress the wounds. His mother was nowhere to be found and I held the poor screaming child while they did this. I was traumatized probably almost as he was.

Do I even need to go on? We let the kids stay up to watch a show that they've been itching to see. Toward the end I put some water on for tea figuring that by the time they were in bed it would be ready to drink. So when the kettle whistled, I asked my husband to pour it for me because I had the kids on the couch on either side of me, and I couldn't really move. He poured it and started to bring it to me, like he usually does (although how he thought i could hold hot tea in that position is still beyond me). For some reason, Gus decided to run toward the kitchen just as my husband was coming out. Cue the collision soundtrack, kid screaming, etc., etc.

Luckily, the burns weren't bad, but they did go across his shoulders and a drop got on his thigh. It could have been much, much worse, I know. The tears didn't last long, and thanks to an ice-pack and some burn cream, he is now sleeping peacefully.

This had to happen today of all days? I think some divine being is having one wicked laugh at our expense this evening. None of this is tragic, just bizarre and annoying enough to make me wonder about the universe. I wouldn't be surprised in the least if an alien ship landed on my front lawn tomorrow morning just before Gus's new bus came to pick him up. I really wouldn't.

Hiking

we took the kids on a mini-hike yesterday. Just through a path that runs around the lake and through the woods. It is mostly frequented by teenagers looking for a place to drink or smoke or... whatever... in peace. It had rained during the early part of the day, so I put some Wellies on the kids, partly because Gus hates to have wet clothes on and partly because I can't stand to have to handle wet socks.

Gus has been in a very hyperactive state lately. I think it's a combination of my not doing his brushing and joint compressions when he's not in school; part of it is sleep deprivation. He was up at around five a.m. yesterday and this morning. So while we were on our little outing, he wanted to run. But Wellies aren't really meant to run in. They kept sort of sliding off his feet and he'd keep going with his foot in the top part of the boot, looking like he had broken ankles.

Visuals like that I do not need.

After I told him to walk several times, I took a good look at him walking with my husband up ahead. He's kind of like the Scarecrow from the Wizard of Oz. He has that same wiggly, wobbly, loose-jointed gait. It was cute and amusing and a somewhat disturbing all at once. It amazes me that someone who has such laxness in his body can a) be so strong, and b) have such incredible balance. We crossed over a makeshift bridge over a stream: a broken metal slide, a plank of plywood, a couple of beams and a narrowish log. He bounded across without a second thought! Twice!

At one point, he ran right out of his boot and kept going.

The geneticist mentioned something about the loose joints and hyper-extensiveness. I have it too, so watching Gus actually gave me a bit of insight to what I used to look like before my layers of fat lessened the effect. Anyway, the doctor said that loose joints could have some relation to some sort of heart disease later in life. I don't see the connection, but I guess I'll find out more tomorrow when we see him.

For now I won't worry about it and I'll just continue to watch my little scarecrow in awe.