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.

Walking Between the Schisms

We’re involved in two types of support groups right now.  Ones for my husband and ones for my son.  I’ve noticed the same thing in both:  there is a schism in both communities.  Do we fight it and try to fix it?  Or do we accept it and embrace the difference?

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I’ve known about this schism since I first met my husband.  He has a degenerative eye disease and is legally blind, carries a cane, yet can see enough to make eye contact a see a bit.   He took me to RP support group meetings and supported the Foundation Fighting Blindness.   They raise money for research to cure or delay diseases that cause blindness.

I learned that it was a totally different approach than the National Federation of the Blind because it’s serving a different population.  The FFB is serving people who are losing their vision through degenerative disease.  The NFB is serving all blind people, many who were blind from birth, some who are losing their vision.  From that perspective blindness isn’t something to fight, it is something to adapt to.  They raise money to send people to the annual conference and help members of their support group.

I was kind of surprised to see that there is a similar schism in the Autism community.  I watched this interesting video on indiegogo.com called Citizen Autistic, it basically puts forth that not all autistic people need an organization like Autism Speaks to speak for them, they can speak for themselves just fine.  They point out that a large percentage of monies donated doesn’t actually make it out to the community, and that there are no people with autism on the board of Autism Speaks.

There’s a group of people who feel that neurodiversity and acceptance is the answer to autism.  Not defeating it, not fighting it.  This article, What is Neurodiversity? sums it up nicely for me, “The idea of Neurodiversity was developed by autistic people in opposition to the pathologizing model. According to them autistic people are not disordered. They have a different sort of order. Their brains are differently wired. They think differently. They do not want to be cured. They want to be understood.

For now, we’re walking the line between the two sides.  Interventions and therapies for my son, but learning to trust his own sort of order.  And for my husband it means, networking with NFB Support groups and learning the Apple iOS from people who are totally blind, so he can learn to use it as adaptive equipment for what vision he still has.

If there were a cure for my husband’s vision loss, he would do it in a heartbeat.  If I could help my son talk better and understand better, I would do it and be really happy about it.  Then again, everyone is different and I wouldn’t want to make them feel less like themselves.  I wouldn’t want my son to suddenly be perfectly normal (whatever that is) if he lost aspects of his personality that make him lovable or brilliant.

He’s Literally Funny

Several months ago, my PDD-NOS son was really excited and told me that he can “get a free scooter!!!!”  I didn’t get what he was talking about, then one afternoon, the commercial came on and he yelled, “MOM MOM MOM!!!”

It was a scooter store commercial lol.  Here’s the questions:

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  • Do health issues limit your mobility?  “YES!” he screamed at the TV
  • Is it difficult to get to the bathroom on your own? “YES!” he screamed at the TV
  • Do you feel like a bother to others due to your lack of mobility?  “YES!” he screamed at the TV, and my heart broke a little bit.
  • Have you fallen in the past 12 months? “YES!” he screamed at the TV

“If you answered YES to any of these questions you may qualify for a free scooter!”

Sigh.  Giggle.  

Had to explain to him that these were for old people not young kids.  He was so disappointed 😦 he really thought he was getting his own scooter that he could drive around and I couldn’t possibly say no because it’s FREE.  He said, “When I’m old, I can get one?”  And I told him, while maintaining a straight face, “If you need one, honey, you’ll get one.”

At least he’s paying attention, right?