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.

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.

I’m listening

My 10 year old son was diagnosed last fall with PDD-NOS.  I’m very new to this, I have no experience with autism other than what’s in the mainstream media.

I remember learning of autism as a kid and feeling fascinated by it.  I read about “classic” autism (non-verbal, rocking, spinning things) but that was about as far as I got, I was 10-ish.  There was probably an after-school special on it.  I didn’t know anyone who carried the label “autistic.”

Now I love someone who has received this diagnosis and I’d like to understand more fully.  I’ve learned all about the diagnosis and all the labels.  (Which, just as soon as I learn them, they’re all changing and going away in the new DSM-V.)    I’ve learned about neurodiversity, too.  I’ve learned that autism is individual, no one is exactly like my son.  I’d ideally like to help my son progress and have a happy, fulfilling life.  For now I’ll settle for learning.

My son is different than me and sometimes it hurts.  His frustration and pain, frustrates me and causes me my own self-inflicted pain.

I’ve been on a path that taught me not to fully trust the media.  I’ve watched TV and movies all my life, and I’ve come to believe most of it’s BS.  I’ve learned not to go with the business that pays a lot for advertising because they charge me more.  I’ve learned to look at charities who want my money and find out how they use it and give only to those that seem to actually spend it on the people who need help.

When I started researching autism, of course I came across Autism Speaks.    I noted all the high profile events, big fundraising, and that they’re trendy.  I noticed quickly how many things were being marketed to me, the parent of an autistic child.  Soon after I collected information from them, I found a video on indiegogo project called Citizen Autistic.    They point out that the percentage of money raised by Autism Speaks that actually supports autistic people is small, and that there are no autistic people on the board.  I wasn’t surprised to find that there are people who are labelled autistic who don’t feel that Autism Speaks, speaks for them.  (And surely they are the Voldemort of which gareeth writes.  I just found gareeth’s blog today and this post really rang true.)

I got on facebook to connect with other parents and learn more.  Everywhere I look, there’s people who want me to post a ribbon, puzzle pieces, and the color blue.  They want me to buy scarves, and jewelry, some of it blue, some of it with puzzle pieces on it.  It’s trendy to get a puzzle tattoo.  Pbbbththth.  Not happening, sorry it’s not meaningful to me, I feel like I’m being treated like a fresh income stream.

I do not choose to rule my life or my son’s life by one diagnosis.  I feel blessed that he is so high-functioning and he is making progress.  I want to learn how to help him continue to progress so that he can live the life he chooses.  In the meantime, want to reduce my own frustrations and learn how to parent my son.  I’m listening to him and I’m seeking information from people who are living it.  I am also finding other support organizations.

Thank you gareeth, for your post.  I am looking for knowledge from people who live with autism.  I am an outsider, because I don’t have autism, yet I know more about it than many, and I am listening.  I hadn’t heard about the Six Degrees Project.  I agree with you, I don’t fully get the premise.  If it fosters empathy, it could be a good thing, but not speaking for two hours doesn’t simulate autism very accurately in my world.  My son seems to have language failings, but he does speak.  I’m thinking that from my experience of living with my son, to somewhat experience what he goes through, you’d need a few hours of living in a world with people who speak words at you in a foreign language, invent rules that make no sense, that continually prod you to do things you don’t really want to do.

Hmmm…maybe to understand autism they need to spend some time going through customs, with no translator, while in possession of a suitcase full of improbable items they have to explain?  I suppose that would end up taking more than two hours.  Maybe just put them on a crowded train with a bucket on their head?  Not exactly right, but it makes more sense to me than being quiet for two hours.

bucket

If I choose to be quiet during the same time as the Six Degrees thing, it will be because I am meditating.  If I choose to wear blue, it’s because I like blue and that’s what was clean.  I’m not very trendy, and while I do like puzzles, it’s not enough to wear puzzle pieces on my person.

(I have a running, ever-unpublished, list of undiagnosed adults who could benefit from social skills training.  Special Ed for All!  That’s kind of wrong of me, but gosh, wouldn’t it be helpful?)

These are gareeth’s words below except for the ones in parenthesis.  Chunked for my own understanding because I glossed over it a couple of times, and it’s too important to gloss over.

“the very reason we

are objecting is

precisely because

some cannot object 

(and that)

is lost

on those who feel the need

to remind us of this.”

My One Perfect Cuppa Coffee

I grew up drinking coffee.  All the grownups drank coffee.  When we went out to dinner, I’d be held hostage at the table as all the grownups chatted and had coffee.  Sit still, be good, we’re almost finished.  SIGH.  I think I learned to drink coffee just to have something to do.

For a long time, I drank a LOT of coffee.  I’d make a pot of coffee and drink it all day, and the pot would stay on and give the coffee that over-baked flavor (because this was before microwaves.)  I’d go out to eat with my friends and sit around and drink coffee, I wasn’t picky. Diner coffee was a staple.  Drinking coffee became a defining “adult” thing to do, as I’m not really ‘good’ at drinking alcohol, and I never saw the point of smoking cigarettes that don’t even give me a buzz.

I quit coffee several times and experienced the withdrawal symptoms that come with a nasty drug addiction.  I would quit for awhile, get through the nasty bits, but finally decided that drinking coffee still made me happy.  Eventually, I decided to only drink good coffee in moderation.

It’s a good tradeoff.  One perfect cup.  No headache from lack of caffeine.  No twitchiness and stomachaches from too much coffee.

I finally learned the name for the style of coffee I prefer.  Apparently, I mostly drink pour over coffee.  Here’s a blog about it, no need to re-write it because they sum it nicely.  I grind my beans, sumatran mandheling preferably, use a Melita coffee cone & a filter, pour hot water over it and, voila!  It’s coffee, right there in my cup.

I have a lovely french press that I use when I have a small crowd, but it’s a pain to clean.  I have a good old coffee pot that I use for those who like plain coffee that you can see through.  (Why drink over-baked, translucent coffee, I ask?)  Please don’t offer me instant coffee, unless you just like to see the face I make.  Mostly, when it’s just for me, I use my cone and it’s perfect every time, and there’s no leftovers to drink up later.  Just the one perfect cup.

It doesn’t require special coffee pods, no expensive equipment, and there’s really no special technique to it, regardless of what the barista may say.  You pour hot water over ground beans, carefully, so you don’t slop it over the side and burn yourself, or worse, get grounds in my coffee.  

Bill Hicks, It’s Just a Ride

This is a link to zenpencils.com because I didn’t know how to post this as a picture.  Whoops.  Bill Hicks, It’s Just a Ride  Go read it, Zen Pencils is awesome!

As I read this, I couldn’t help but hear him singing, It goes up down, round and round, it has thrills and chills, and it’s very brightly coloured.

Go listen to the song, if you haven’t already.

Applied Mindfulness, Meteors, and Pie!

This morning I was reading a post titled “Part 134, Relationship Rules in the True Way, and a Starship Rescue Planned,” by Dr. Kathryn E. May.  Go read it, it’s worthwhile.  I would post parts, but she prefers that the post remain in it’s entirety, and this is a long response.

Maintaining a loving attitude toward everyone around me, all day long, is not a simple exercise.  Yes, this is applied mindfulness.

Sometimes I have to mindfully remove myself, either physically or just from the conversation, before I start strangling the ones I love.  I think my problem lies in that I was partially raised by Homer Simpson.  Luckily I was Lisa, not Bart.  Image But we parent how we were parented, and I am ashamed to say that I’ve heard my father’s words slip from my tongue in moments of stress.  DOH!

Practicing forgiveness is powerful and it starts with forgiving myself.  I believe that when my children or my husband annoy me, it’s because they’re reflecting my creation back at me.  The things about my son that bug me the most, are the things he does that are just like me.  And it’s painful to look in that mirror sometimes.

Then I remember that it’s just a fun house mirror, and I’m looking at a terrible distortion of something that really isn’t that bad.

Same is true for public encounters.  When I’m upset, angry, worried, rushed, or generally snarky, the people around me are too.  Rather than get angrier, I’m learning to step away and get myself right again and the angry people seem to disappear from my universe.  They can’t stand to be around me apparently.  Yay!

It’s a whole lot easier to love everyone I come into contact with when they’re lovable, so first I have to love myself and be lovable.

In Dr. May’s post, I love the suggestion to get into connection with everyone you meet BEFORE you speak a word.  Make eye contact and feel empathy for the person.

Making eye contact one is interesting in my household, with my partially-sighted husband, who does make eye contact, but when he looks at me is usually focused lower than that, and my autistic son, who doesn’t consistently make eye contact.  (When I do, it seems to make him a little uncomfortable…interesting.)

I’ve been making eye contact and smiling at people in public, a lot for months now.  As I walk through stores, sometimes even as I drive, I’ve connected with people.  I’ve learned to savor the looks I get, some people quite obviously think I’m crazy or on drugs.  Some don’t seem to see me at all.  Some smile back.  Some people actually talk to me!  (Oh, and the babies just stare at me and I smile and stare right back.)

As I’ve done this, it has cemented the idea that we are all one.  I have come across a few that are not of me, or like to think that they’re not.  I have come across a few that my intuition said RUN! and I have, no time for questions right then.

I went to Dr. May’s post because of the word of a meteorite speeding toward Earth on a direct trajectory that is supposed to hit tonight.  Of course, it’s not on the news at all.  I am thankful to read Dr. May’s words that we are protected and it will be exploded before impact.  I do so deeply hope that this event could finally provide an opportunity for Disclosure.

I appreciate the news, and I’ll fishing in the mainstream for corroboration, but there’s no point in my worrying too much about death raining down from “above.”  We’re tiny little specks on a tiny little planet, a direct impact could wipe us out and there’s not a thing I can do about it but die with grace with love on my lips and in my heart.  (And trust that I truly don’t die, that this is all really an illusion with really great special effects.)

Live each day as if it could be your last.  Maybe it’s just my last day of living the status quo. (oooh, there’s a delicious thought!)