Who Has Control?

So, I’m sitting in my first Weight Watchers meeting of 2012.  I got there on time.  I sat the kid down in the back of the very, crowded room with his iPad and went to get weighed.  (By the way, I’m almost at my goal and have officially lost 34 pounds – yes I was that fat).  I finally sit down too and I know he’s giggly and chatty but I’m not budging.  I’m going to stick it out if it kills me, because it’s for my health (pun intended).

I think, though, that he was spoiled last week with his dad taking him elsewhere while I went to the meeting.  This Saturday he was determined to evict me from my perch.  He was talking loudly to himself through giggles and laughter.  His body was like a limp noodle, laying on the chair.  Then, he got up and started heading toward the front of the group, like he was going to take over the meeting!  Caught him.  And, of course, when I tell him to be quiet, he becomes defiant and louder.  I actually, as a reflex, and by instinct, put my hand over his mouth after he yelled out during the meeting.

I’m partially to blame for setting myself up for failure.  I let him play with an app called Type N Talk.  I don’t know if you are familiar with this app but it takes whatever you type in and generates a Steven Hawking-ish voice translation that “speaks” what you’ve typed with the push of a button.

The little guy thinks it is hysterical to type wildly and randomly, then listen to the voice read back all the letters.  Between laughs, he will ask me, with slurred speech, from laughing, “What is he saying?”  He know exactly what he’s saying but I’m quite sure he wants to test whether it is as funny if Mommy recites it.

The second thing I’ve done, in the past, is to be weak.  When he would act up in a large group, I’d pull him outside.  My standard reaction is to remove him from the group.  Or I leave.  I refused to do it on Saturday.  I sat through his behaviors, shushing him and taking away his iPad.  At first, I thought this might escalate his behavior, and for a few seconds he was a little louder.  Then, he went “inside himself” and talked in a low voice.  He was “somewhere else.”  Eventually, he simply sat – quietly.

Of course, on the way to quieting down, I got “the look” from strangers.  If you need an explanation of what I’m talking about, I suggest you read this great post, written by Brian and Christy at Both Sides of the Coin,  or this explanatory post from Flappiness Is.

A couple, probably in their 60s, very intentionally, kept turning around and looking directly at my son and then turning back toward the front.  They did not make eye contact with me. There were also adults talking just as loud in the back.  This couple gave them the same look.  So, I wasn’t singled out, at least.

I was glad that I stayed. I just got lucky that the little guy calmed down and sat quietly.  There was no magic in my method.  It just happened to work out for me.

His behavior was nothing less than “goofy”.  Laughing uncontrollably, being loud and defiant.  Was it intentional?  Manipulative?  Was it part of autism?  Yes, I think, all of the above.  Socially, it was inappropriate.  He knew it.  But did he recognize that others would pay attention and be unhappy?  Doubt it.  Would he care if he knew?  Maybe, but I don’t know.  I know he didn’t want to be there – and therein lies the manipulation.

I see more typical, five year old, daily.  That does not mean the autism is gone.  It isn’t.  It never will be.  For the rest of Saturday, I got a nonstop talker, obsessed with reciting the names of planets, in order.  He, repeatedly, asked me if Mr. Moon loves “mommy”.  Asked me if Triton is Neptune’s moon, if Charon is Pluto’s moon, if Dione is Saturn’s moon.  He knows the answers.  He recites them 100 times a day.  I heard about the phases of the Moon all day and all night til he was asleep.

We’ve had our share of progress.  It comes almost daily.  I want to say there are more good days than bad days.  But there really aren’t.  There are good “moments” and good “hours” but there are never good or bad “days”.  There are just days.  Sometimes, the “moments” of bad outnumber the “moments” of good. Sometimes, it’s the other way around.

Autism leads our days, and sometimes, when we’re lucky, it takes a back seat.  In it’s place, come other behaviors.  Before I can say a behavior is autism-related now, I have to examine now whether I’m being played.  I have to tread carefully.  I don’t want to react to something I think he can control when he can’t.  The balance is tricky, and I am wrong on a daily basis, to my chagrin.

Underneath it all, autism will always be part of us.  How much it will lead our dances is the unknown at our house.  The numbers of ups versus downs are always changing.  I try hard to manipulate them here, so we can live in the “good” more than the “bad”.  But sometimes, I just have to surrender.

After all, if I didn’t, I’d only be kidding myself.  I don’t have control.

Autism does.

I have to find the way to peaceful coexistence.


About solodialogue

I'm a lawyer and the mom of a 6 year old boy with autism. I work part time and spend the rest driving here and there and everywhere for my son's various therapies. Instead of trying cases, I now play Pac-man and watch SpongeBob. I wear old sweaters and jeans and always, always flat shoes to run after my son. Yeah, it's different but I wouldn't change it for anything. The love of my child is the most powerful, beautiful and rewarding aspect of my life.
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11 Responses to Who Has Control?

  1. Good job keeping your cool! I remember Tommy at that age.. he was such a wiggle worm.. especially when i needed him to be quiet. 🙂

  2. Lana Rush says:

    Glad you (and Tootles) lasted through the meeting.

    I like what you said about moments vs. days. That’s pretty much how it goes around here. It’s just a day, with some “moments” mixed in.

  3. Lizbeth says:

    Yup, learning to live with “it” is much harder and a finer balance than any rope a tight rope walker would have to navigate. Finding that balance is key and the tricky part for me is that it always changes. Just like the moon and tides, I guess.

  4. Kelly Hafer says:

    When you do figure it out, and I have no doubt you will – you must share the secret! I am so guilty of, still, trying to “change” him. I try to stifle the stims.. Of course I try (and fail) to control the rage and aggression. I have surrendered. Or so I thought. I am still fighting. I feel like I am fighting for the future of my son and that if I give up, I am sentencing him to a prison. And, for Ted, I mean that literally. Intellectually I know it is not ME who is sentencing, but rather autism is doing this. But emotionally, this is something that still has the power to kick my butt.

  5. Kara says:

    First of all, Happy New Year. Secondly, please drive your skinny little butt over here and pick up the 34 pounds you sent my way. Seriously.

  6. Flannery says:

    I haven’t learned surrender yet. I’m a slow learner, what can I say?

    Kudos to you for holding your ground. Mine doesn’t seem to mind if he’s being inappropriate and drawing attention either, so I know how you feel. But I still march him out of places because I haven’t developed the stamina to stick it out. Maybe someday…

  7. Good work on that weight loss! You GO, girl! 🙂

    I am constantly trying to figure out what kind of behavior my boy is displaying. Without an official diagnosis yet, it’s even harder for me to try to solve these mysteries. My friends are constantly telling me, “Oh, my child does that too!” trying to tell me I’m reading into everything too much, which, you know, really helps. (not!)

    Question about those seizures- did you know he was having them or was that something they discovered through testing? I’m curious because I would say my son has never had seizures but he has had strange sleeping behaviors including the grinding of the teeth that sounds like he is grinding through cement, as you put it. He’s having an EEG on Feb. 13th, so I’m curious as to this being a possibility I haven’t known about that may show up or I could ask about?

    • solodialogue says:

      Suzanne, I had NO idea he was having seizures. He had no classic symptoms. He slept through the night from the time he was 2.5. When he was 2.5, he had pneumonia and was given prednisone (a steroid) and prescribed asthma meds. Before that, he NEVER slept through the night – lots of night terrors, meltdowns, waking… Our neurologist told us that the steroid helps with seizures and it was THAT rather than the asthma meds that started him sleeping. It was only after the EEG (which I was sure would be normal) that we learned he had these. The best EEG to have is the ambulatory 24 hour EEG. Parker would have the leads put on at the office, go home with them on sleep in his own home overnight and you’d return the EEG “backpack” (recorder) the next day. I urge everyone to get this test!! We had no idea. 🙂

      • WOW! That is unbelievable! Parker actually had pneumonia around that age as well. I can’t remember what meds they gave him though… The EEG he’s scheduled to have is not the ambulatory one, but I’m thinking after that initial one to ask for that as well. Right now my focus is getting through the “steps” to get him a diagnosis already! I could really see this as a possibility for him, though. He has weird behavior in his sleep. (I know this from the many nights he’s ended up in my bed.) He has strange arm movements/jerks and then there’s the crazy grinding and also a bit of thrashing-type of movement. Very possible. I will mention it that day as we’ll see the nurse p right after the EEG. SO glad to have connected with you!

  8. ElizOF says:

    Congratulations on your weight loss successes! 🙂 I’m also glad you didn’t walk out… People have to adjust. that’s life! 🙂

  9. First off, kudos on the 34 lbs! That is sooo difficult and you’ve shown such will power!

    Second, the manipulation. Ugh! The manipulation! If T is the king of manipulation, then surely Little Miss is the queen. Like you, sometimes I am able to stay strong, but a lot of times, it’s just easier on everyone if I go with the flow. I need to remember, like you, that surrender isn’t always the best answer — even if it is the easiest. Thanks for posting this reminder!

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