OK Autism, I’m Aware, But Not Sure Why I Should Celebrate

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Autism Awareness is everywhere, and we’re very new to this diagnosis. I’m still processing it all and I’m not completely convinced that I need a puzzle necklace or blue light bulbs to show support of autism.
Oh, I’m aware of autism, as I sit here I’m listening to my son screaming because he doesn’t want to take a shower. (The one he promised he’d take because he didn’t want a bath last night.) I’m quite aware of autism.  Autism HATES me, “hates me forever apparently,” and hates me quite personally, why should I show support of it?  I don’t want to ‘like’ autism.  I want to say, “yo autism, bite me!”I don’t show support of autism, I’m running up against it every day. I love my son, he is who he is. Nothing is going to cure him and make an intrinsic part of him go away. I wish I could make things easier for him, but I accept that this is his journey.   I have my own journey, which is learning enough so that I can help him make sense of this insane world and find his own way in it.  And, just because I have high expectations, I expect that I will do so with humor and grace and love.

Is it wrong that I want my child to be able to embrace his weirdnesses, and yet grow-up and at the least have the choice to behave as if he’s normal?  I mean, I’ve, mostly, learned how to pass myself off as normal.  Almost all of the time now, I can sit with a group of grown-ups in a serious situation, and guard my reactions and emotions enough that I don’t make the strange off-comment that makes them wonder, or laugh when it’s not officially a joke.  By the time the meeting is over, not one of them would guess that I’m as weird as I am.  Especially in groups of very serious grown-ups, I sometimes seethe with pent up laughter as I see the absurdity that goes on.
Sometimes I’ve felt like I’m so different from everyone else, that I’m an observer of the human race.  “I’ve learned to rub blue mud in my bellybutton” whenever the natives do, so they don’t notice me noticing them.  These humans are touchy and don’t like to be laughed at.  Hide behind this book and don’t stare directly at them. ::chuckle::  I can pass as one of them when I need a job, or go to court, or go out in public.
I’m not terribly surprised that my son isn’t ‘normal’ when I don’t feel perfectly normal, myself.  I know that his brain isn’t wired like mine is.  He may be like me in some ways, but he appears to be using a completely different operating system than I am.  The throws out non-sequiturs that make my brain hurt.  He interprets sensations differently.  He loves drama and I prefer comedy.
What I haven’t figured out is how ‘lighting it up blue’ is going to help my son quit freaking out.  I’m puzzled as to why a puzzle tattoo helps some people cope.  I don’t want to buy a blue scarf, or put a puzzle piece on my facebook, my car, or my person.  I am willing to accept that some people do want to do these things, but I’m not completely convinced that awareness of (the word or the disorder) autism is actually providing any comfort or support for those who are living with autism.
Our money is going towards insurance co-payments.  Asking me for donations or charitable purchases of stuff I don’t need right now feels a bit annoying.  I feel a bit like I’ve been tapped as a whole new income stream.  I’m aware already, now what?
Personally, I’m busy trying to understand my son, with his own individualized version of autistic traits and behaviors, and figure out how to help myself cope in a manner that supports my well-being.  It’s frustrating because there are not many people experiencing exactly what I’m experiencing.
Sure, there’s 1 in 8 who are being diagnosed as autistic, but they’re all different.  There’s a whole lot of contrast out there showing me how blessed my family really is because autism is a big spectrum.  Sure, I want to offer support to those who really need it, but I’d rather it wasn’t just a ‘show’ of support.  Meaningful support is what I’m looking to give and receive.  I’m not convinced that meaningful support can be provided by a one size fits all project.
Sigh, another conundrum for another moment because the tantrum is over, the shower is done, and he’s sorry that he yelled.  Apparently, all the stress washed away for awhile, and there’s my son again and he loves me.
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Thank You Mom, I DO Act Just Like Him

We’ve had several long days out of the house.  Large chunks of it were frustrating and difficult because my children were home on Spring Break.  (Officially over as of now, this is the weekend, and everyone goes to school and work on Monday.)

The best part of Friday was spending time with my Mom.  My Mommy loves me!  We were talking about all the paperwork I’m keeping track of all of a sudden and she came up with a thoughtful way to help.  She brought me a whole box of nifty filing supplies and it was the best present ever.  After lunch and haircuts, we sat in the park and watched the kids play.  I organized my bag full of paper and pulled out appropriate reports for her to read.

It was interesting to get her take on some of it.  As she read the reports about her grandson’s diagnosis of autism, she said, “A lot of this sounds like how you were as a kid.”  And I completely agree.  (Although, I don’t remember getting ready for school and only putting on one sock.  I do remember that getting ready for school was an impossible task many days.)

As always, this diagnosis makes me wonder where does his behavior cross the line between autism and just being a kid?  Based on the initial testing, It sounds like we’re also dealing with an underlying chromosomal defect, we’re just waiting to hear exactly what, but that’s not inheritable.  But how much of his behavior is genetic and how much is autism?  How much of it is that he’s like me?

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Me at an awkward stage, looking just like my son.

I have certainly found, that the things about my son that annoy and frustrate me the most are the times that he is most like me.  Parenting is an opportunity to experience upper-division classes in self-love.  Obviously, I still have my own crap to clean up, or I wouldn’t get such a clear reflection of the things I don’t want to see.

F’rinstance…

I had my own full-blown meltdown this morning.  My morning ritual is to make a cup of coffee and drink it while it’s hot.  My simple ritual was disturbed while I was feeling hungry and sleepy and overwhelmed.  (My kitchen is hideous, we’ve slept here every night, but we’ve been out of the house for several days and no one has done anything but make more messes.  Tomorrow is Easter, and no one has clean clothes and my husband is working overtime, so he needs clean clothes in a few hours.)

I resolutely went to the kitchen to make my one perfect cup of coffee.

My father-in-law, who lives in the basement now, ran out of his coffee while we were out, so he used mine.  The coffee cone was full of grounds where he spilled over the filter.  I calmly took the filter out and went to rinse out the cone.  The sink was full of dishes, so I rearranged the mess so I could use the faucet, getting a bit irritated with everyone that they can’t rinse a fricking dish or stack it in any sensible manner.  Breathe.  I reached for my pyrex measuring cup that I use to heat up my water, noticing that the bottom was filled with sludge, and the handle was sticky.

OH MY GOD I HATE STICK-EH!  ::font: sarcasm (Hmmm… What, me?  Texture issues? nah.) /endfont::

I went and cried for a few minutes and my husband found me and got me to tell him what was up.  He wanted me to check out the cool app he found.  I did, it was nifty, but I could tell I was approaching meltdown unless I got some food quickly.  So again, I squared my shoulders and faced the kitchen.  BREATHE!  Focus on what I want it to look like, focus on that perfect cup of coffee that I’m going to have.

I realized, gee!  I have another pyrex measuring cup and it’s clean.  I don’t have to touch the sticky thing until I’m ready to do the dishes.  Yay!  I started my water, rinsed out my cup, rinsed my cone, again, and put in a filter.  Opened the grinder to find almost a cup’s worth of coffee ground superfine.  (Note to self: tell grandpa about coarsely grinding the coffee, because fine can be too bitter.)  OK, get the new bag of coffee.  BREATHE!  I know he’s had to open it and it’s a beast to do it right.  Forgive him before you touch the bag.  OK, it’s f’ed up.  It’s okay.  BREATHE!  Trim a bit off and pour a bit in the grinder.  Fill the jar, fill the grinder, gently grind the beans.  Great, this is going smoother.  Water’s hot, smell the coffee.  This is going to be okay.

I reached for my caramel syrup, and it was gone.  😦  Grandpa strikes again.  F$%&!!!!  Can’t take it!  I was just at the ____ing store, there was enough syrup for at least a week!  Mother ____ing ____ sucking goat ____ing ($*%&W%&!!!!!!!!  Stay the F*&% away from my coffee!!!!!

I tried to be calm.  I breathed.  I faced it all, and lost it anyway.  I cried quietly while I got the cream, felt thankful that at least I had good coffee.  Grabbed a hard leftover piece of brown sugar and plunked it in my coffee, because that’s a nice treat and I was wanting sweet this morning.  Took my coffee upstairs and locked the door.

It will all be there when I feel sane enough to handle knives without frightening people.

I’m noticing all this emotion as I sit quietly and anchoring it so that I remember how helpful it is to be alone when I’m upset.  I forgive myself for getting so upset that I cried over a break in my routine like a little kid.  I forgive my son for being like me, and I forgive me for making him that way.  I allow myself to cry and release the tension.

Sheesh, I’m going to have to start keeping a tantrum log for myself.

The Preemptive Tantrum Attack

This morning was emotionally rough, at least for me.  I did get up early and take care of myself first.  I went and got the clean laundry upstairs, so that everyone could get dressed without asking me where anything was.  Yay!

I presented it as fact that my oldest was going to school today.  He tried to tell me he’s sick like he did yesterday, and I simply gave him medicine for his cough and said he’s going to school.  I finally talked to his therapist last night, and she very nicely told me that I’m coddling him and to send him to school.

I do agree that he was avoiding the test, and avoiding the bullies at school, but I’m annoyed that he doesn’t have the tools to cope with them.  And basically, I feel like everyone’s telling me that all I can do is push him out into the world so he’ll learn how to cope.  I’ve been doing that for years now, and I end up with a sad, anxious kid to cope with.  Thanks y’all.

I really did try to prepare my oldest to go to school, try to review the coping strategies he can use to get through his test.  But he really didn’t want to listen.  When I finally got him to come and sit at the table and talk to me, his little brother decided that it was time to run around the table and play with the dog.  (He’s part tornado, did I mention that?)

Once I kicked the 8 year old upstairs to brush his teeth and finish getting ready, the 10 year old, whom I’m trying to help, is sitting at the table crinkling the wrapper of his snack.  Crunch, crinkle, crinkle, crunch, crunch.

Gone….too much…one crunch too many….I lost it.  And, while I didn’t scream, I did snatch the granola bar from him and make a noise that indicated pretty well, that Mom had a very loose grip on sanity.  I almost calmly said, “Talk over!  You don’t want to talk.  Go brush your teeth!  Go find your shoes!  Get. Out. Of. My. Kitchen.”

His brother helped him find his shoes, he went to school, and he didn’t throw even one tantrum.  He couldn’t, because I had one for him.  

There wasn’t enough room for TWO tantrums in that kitchen.  My tantrum was quiet and I tried not to cry on the turkey sandwich I was making for lunch.  But I think I was clear that I was the crazier of the two, and he backed down.  Standardized test is far less scary than crazy mama.

Interesting technique.  Preemptive tantrum used as tantrum prevention.  Yeah, I meant for that to happen, I planned it that way.