Tuesday, November 24, 2015

The story behind the picture.

You know how Facebook does this thing now called "On This Day" and it's a bunch of highlights of stuff you have posted in the past on that date?  I get a big kick out of it.  (Well, maybe not the day it remembered that my dog had died.  Gee, thanks Facebook for that special memory!) I love seeing pictures from years ago of the Kiddo when he was little and had big squishy cheeks that I just want to reach into my phone and take a bite of them.

Today's shot is one of him when he was 6.  He was in CARS pajamas and laying under the Christmas tree.  More specifically, laying under the tree skirt. Yep, he used to love to snuggle up under the cheepo fake snow cottony fabric like it was a blanket and just stare up at the tree.  Side note, kind of odd we try to pretend the tree is surrounded by some swatch of snow.  Normally snow in the house would be a bad sign but then again, how often do pine trees sprout up in living rooms?

Anywho, it was one of the many nights that he was doing this and I just had to take some pictures to upload to Facebook because it was so freaking adorable I almost couldn't stand it.  I'm all "Look at him!" to my husband, wanting to share sweet moment with him.  Daddy Fry as I recall, wasn't amused.  In fact, he was kind of annoyed.  He was concerned that the Kiddo was going to mess up the tree.

Now practically speaking, he was probably right. (Hey Babe!  Look at that.  You have me admitting you were right in print. You best print this blog post up and frame it!) The Kiddo could of knocked off some ornaments or possibly the tree itself.  He could have been hurt or the dog too.

But all I saw was my Kiddo being his #TeamQuirky self.  I love how his brain works and this was one of those very cool moments where you see an example of how he plays.  Is it typical? Nope.  Is it interesting? Hell yeah! Not to mention, kind of genius.  Who doesn't love staring at a big lit up Christmas tree? I still do.  The fact that he was like "Oh, I'm a tad chilly. I'll just use this cloth here to cuddle up." was pretty brilliant.

At that moment, that wasn't the battle I was going to fight.  So I ignored my husband as I am apt to do and took a billion pictures. On my 97 shot, I kind of got the Kiddo to sort of look at the camera.  Success!

But it's interesting to me now when I see the cute shot that there was more to the story than what appears.  I know that's probably the case for a lot of you who read this too. Even if your kids are not autistic or special needs.  There's always more to that picture.

So just try to remember that the next time you find yourself in a funk about not getting the perfect shot and seeing someone else's and lamenting "Why can't that be us?".  You don't know what went into that.  You don't know if the parents are annoyed at each other or if a meltdown happened 20 minutes later or whatever.

Dammit, tonight I am going to lay under the tree and see if the Kiddo does it with me.  ;-)

Wednesday, November 18, 2015

If I could just get into that brain of his for an hour...

I walked into my bathroom this morning after the Kiddo had used it. On a good day, it's a tad disheveled.  Today?  We have achieved brand new levels of Frat House realness.  Yeah, my Kiddo is fully independent enough to know when and where to go to the bathroom.  Getting it into the toilet though? Not so much so.

And I'm not talking the usual sprinkle or puddle. Not to be gross here but you're most likely an autism parent reading this.  So this kind of TMI, you should be able to handle.  If not, kick rocks.  Anyway, this was like the Kiddo decided to recreate the port a potties at the '92 Lallapalooza that scared me for life.  I had a complete flashback and I swear I could hear Flea from the Red Hot Chili Peppers banging on his bass in the background.

It. Was. Bad.

It was also ALL OVER.  The floor. The toilet.  The bath mat and of course, my socks.  It seemed that Kiddo hadn't even bothered to aim at all.  Like an out of control garden hose at full blast.  (Please, spare me all the suggestions of stickers for the bowl or throwing Cheerios in the bowl for him to aim at.  Been there. Done that.  Still got peed on.)

And I am beyond pissed! (Pardon the pun.) This wasn't an accident.  This was pure "Oh I know I can't pee in my pants.  So I'll just go into this peeing room and pee.  Over everything.  Then I will leave the peeing room and go about my business."

Make him clean it up you say?  Yep, I've tried that. You see, the Kiddo in this situation is the giver of zero fucks.  Cause I've done that plenty of times over with him.  I realized pretty quickly that if he had to go in and pee again, he wouldn't give a monkey's butt if the room was covered in his piss or anyone Else's for the matter.  It was also five minutes before he had to get on the bus.  I knew making him clean it at that moment wouldn't be done quickly or even neatly.  Most likely, I would just be creating a situation where I would have to clean him as well.  I opted for teaching that lesson AGAIN another day.

As I'm cleaning the crime scene later I find myself grumbling "Why does he do these things?  How does he not even care?  I just want to know. I just want to be in his brain for an hour and see things how he sees them!"

I know my Kiddo can, for lack of better words, care about people, things, himself etc.  It's just different how he does it or when and that's so freaking hard to accept at times.  Considering yesterday I spent an hour with his teacher going over the progress he has made lately, I find myself still back at square one with all the things I still have to teach him.

Oh well.  Time to go take a Silkwood shower and scrub myself clean.  At least I know the bathroom is spotless.

For now. ;-)

Tuesday, November 17, 2015

Once more, with feeling.

"Oh my gosh! He's such a chatterbox."  says the waitress.

I just smile and agree.  At this moment I am tired.  I just want to eat my meal as quick as I can because I know the window of acceptable in public behavior is closing.  He's on his last five fries.  He's getting stimmy and loud. We need to wrap this up.

I get it.  She or anybody sees a happy and cheerful Kiddo talking up a storm.  Who couldn't love that?  But that ten second sound bite doesn't paint the whole picture.   If they stick around longer, they usually start to see what I mean.  The flow of conversation is far from traditional and I once again find myself being an Kiddonese to English interpreter to any of them that try to engage with him.

"Oh my gosh!  He's so cheerful and he's got so much energy. How do you even keep up?" says the guy at the trampoline park.

I smile, agree and plop myself on a bench because unlike my Kiddo I am exhausted.  He's been running around like that since 5AM that morning.

"Yep. He's a real hit the ground running kind of kid." I reply.

Again, I will have this conversation where someone will marvel at the crazy and hyperactive amount of energy my son displays.  They will sound both impressed and slightly alarmed by it.  I'm no longer offended.   My kiddo can make the Tasmanian Devil look like Jeff Spicoli after a bong hit.  Folks just don't know what to say when they see him running at full speed.  Hell, I don't know what to say to it either.

Autism living is like someone hit the "repeat" button on the same song.  I find myself having the same conversations with and about my kiddo.  Sometimes I find myself lacking in delivery of these lines and I'm sure it can come across as rude or aloof.  I'm not.  I'm just tired.  I've just had these same chats with you, with him, with others, a million times over.

And you would think by now I would come up with a bevvy of lines to pick from when I find myself in one of these moments. A good actor should be able to improv, right?  More often than not I do because humor is usually how I get through it.  Even still, I have my days where I just show up and phone it in. "Yeah, he's a hyperactive bundle of energy that never stops talking. Yadda, yadda, yadda.  So do you have any coffee and can I sit down?"

No?  That performance didn't work for you did it? Once more, with feeling.  OK, from the top.

"Why yes.  He is just a chatty bunch of sunshine with a peppy go go go!"  How was that?  Better? ;-)

You don't know what else to say and neither do I. That's okay. It is what it is. Let's run it again from the top, shall we?

Friday, November 6, 2015

Meltdown Hangover

After an epic two and half hour meltdown last night of screaming, hitting, throwing things by the Kiddo I find myself wondering what about this is a gift when it comes to autism. 

Please tell me.  It's the morning after and I am still emotionally and physically hungover from it.   I always used to describe morning sickness while pregnant as the hangover you had no fun earning.  This too, feels like one.  Likewise, no fun was had earning it either.  

There's that fine line with the kiddo when a tantrum (a defined want) crosses over to meltdown mode and we crossed it last night.  Many times over.  Of course, it was at it's peak just when my husband was walking in the door after a long day of work.  Props to him for not turning around and walking right back out.  Babe, I will not blame you if that's what you do next time.  Just go get a hotel room for the night.  That's what I would do.  

And no amount of going over "What went wrong?" will wipe this feeling away.  It just has to run it's course and yeah, that blows.  This was one of those moments of the Kiddo indulging in one of his hobbies, making himself miserable.  You see once he goes down that road, he likes to relive and hash out EVERY WRONG THAT HAS EVER HAPPENED TO HIM.  It's peaches, I say.  Just a barrel of fun.  It's during this listing of the Greatest Hits of Meltdowns Past that he is both calmed by the listing of them but also recharging for the next screaming session.  

I find myself looking at the clock a lot during these.  Sometimes when he gets started I tell myself "OK, this will be over in an hour.  It will be.  You can handle this."  I have to schedule my feelings to an appropriate time to process them cause I sure can't do it when a garbage can is being kicked over or he's grabbing and yanking my arms.  How is it that I blinked and he went from being a baby to a moody tween but during the meltdown, time just stands freaking still? 

I went to bed last night feeling like I had just down twenty rounds with a boxer.  This morning I woke up just feeling heavy.  There's just no other words to describe it.  He's off school today and I have a whole lot of hours ahead of us to fill. He's as cheerful as can be and it's so hard for me to fully enjoy it.  I just want to scream at him "Why? We work so hard for you? What more can we do? Why is everything we do for you still wrong? It must be because this stuff still happens!" 

But I don't because obviously.

Here I am wondering where is the gift in all this?  I know he has them. I've seen them. I've shared them with you.  I'm listing them in my head but still I am struggling.  When anxiety and the inability to fully communicate with others leaves you crippled with meltdowns, where's the gift in that?  

Oh well, better start the day with him.  I know of no other way to start seeing the gifts of him than just moving forward.  I think we'll hit the diner so he can get some fries and Mama can get some coffee.  That's always helped the fun hangovers.  Maybe it will for the meltdown ones too. 

Monday, October 26, 2015

I'm no longer using the word "Grief" when talking about Autism. Here's why.

Ever have a life event that kind of smacks you upside the head and makes you realize you were REALLY wrong about a certain way you viewed something?  Two months ago I attended a wake for a child.  I still think about that little girl and her family daily.  The experience taught me in a way I didn't expect about how I view autism.

I can no longer say I know grief.  I do not.  Not by a long shot.  I know I have written about finding out your child's autism is a grieving process.  I know I have read similar posts talking about mourning the child you thought you had only to discover autism "took the life you thought you had away".  No it didn't.  Not at all.  I know this because although my child is autistic, he is here. He is making a mess.  He is playing with toys. He is singing the flipping "Bird is the Word" song for the 739 time today.

He will need several prompts to finish chewing his food fully so he doesn't gag.  He will need reminding to not tease the dogs. He will be scared if he sees me so much as open the kitchen cabinet with the blender in it.
But he is here.  I can laugh and sing with him.  I can high five him passing in the hall.  I can sneak into his room at night after coming home from a funeral home and kiss the top of his head as he sleeps.

So yeah, life isn't what I had planned but no life is.  Seriously, the life you see others living.  The one you envy, even to them it's not what they expected.  Both good and bad.  Maybe what I feel at times is self pity, frustration or disappointment.   Perhaps a grand combination of all of the above.  For myself,  I know it is NOT grief.  I choose to not use that word anymore in regards to autism and accepting my child's diagnosis.  It's not a grieving process. It's an acceptance process.

It's an insult to compare it to losing a child.  One I won't do anymore.  Or "mourning" because he is still here.  Yes, it's more work on my plate than I ever expected or even wanted.  I am grateful for it because some parents do not have that luxury of complaining because they are actually lost and buried a child.  They are the ones that have the right to grieve, to mourn for a life they can no longer watch and help develop.

I am not saying this anymore.  I'm not asking or declaring you to do the same. All I am asking you to do is hear me out.  Is your child still here?  Then you currently have more riches in your life than others do.  I'm not telling you NOT to be sad or angry or frustrated with your situation.  It would be utter madness for me to even suggest it.  Hell, you don't even have to like it sometimes.  I just know what I felt when I hugged a mother recently who had been preparing herself to accept a lifetime of medical challenges for her daughter only to now greeting us at her child's wake at a funeral home.

I'm not declaring a right or wrong for anyone but me.  Maybe you'll agree or maybe you won't.  I just feel it's important to acknowledge when I was wrong and how I plan to change it.

Thursday, October 15, 2015

I can't enjoy progress.

Put me in a time out.  Give me a social story.  I am seriously ridiculous.  My Kiddo has been making some progress and I'm sitting here thinking of all the stuff he still isn't able to do.  What the Hell is the matter with me?  That's stupid right?  Why can't I just enjoy what he can do instead of obsessing on what he can't?

Take for example his last haircut.  Now, we have come a long way from the Wrestlemania event it used to be.  One where I would hear the audible sigh from the salon staff when I called to make an appointment at the one kid's salon in the area that specialized in moving targets.  (Let's just say our picture was up in several shops as Persona Non Grata.) It took a lot of time.  Lots of prompts.  Lots of bribes.  We have finally gotten to that place of "I will tolerate this because I will get a highly motivating reward after."

I mention he needs one while we're out and he's game to it.  So since we are in the shopping plaza where he now gets it done as I am mean and won't take him to the kid's place anymore because he can no longer stuff his 11 year old butt in the race car seat, I throw caution to the wind and walk in with him.  Maybe we'll only have a little wait.  I'll hand him my phone.  We'll script a bit.  We'll get through it.

But apparently that day was "Take your kid to get a haircut" day. I didn't get the memo and the joint was jammed. There is no turning around and leaving with this kiddo because once we say we're doing something, it's carved in autism stone.  Well, looks like it's a teachable moment for him on waiting and we'll bring some autism awareness up in this shop today.  Multitasking! I love it.

However, the gods of fate laughed in my general direction.  Despite a lot of people working and a sign up sheet, no one seemed to understand the concept of who goes next.  Combine this with the general noise of three different tv sets going (Just how many different ESPNs does one need?), the Kiddo starts scripting and making lots of stim noises to cope.  Ain't it something how his coping skill to loud noises is to in fact make even more loud noises himself?

It's not long before all eyes are on us.  When folks think they're being slick by slowly moving away from us, lest they catch the autism. It's viral, dontcha know?  "Just getting a new magazine. Oh I will just sit WAY over here now instead."

I stiffen my spine. Chin up. Tits out and just keep talking to the Kiddo.  Trying to keep him calm. I can't carry him out of here.  We are long past those days.

And I'd be lying if the thought of "Dude if you could do me a solid here, chill your mofo noises a notch.  It's like when I want to use the blender and you hate that noise. The noises you're making are making me a bit batty now."  didn't cross my mind.  Like just this once, just sit there.  Like any other kid.

Eventually we do get called for his turn and he gets his favorite girl cutting it.  He does it like a champ.  He even engages in some appropriate conversation.  We pay. I tip generously.  I am glad to get the heck out of there.

I should just be happy that haircuts aren't a problem anymore.  That's huge!  Yet here I am, pissed off that we can't even wait for a haircut without autism making itself very loudly known.   I hate that.  I hate that I am still not okay with all parts of autism and I hate that I will have these moments all the time.  That I can't even enjoy the big progress moments because I am so hung up on the dopey little ones.

What can I say?  I'm a bit of a holy hot mess that way. ;-)

Monday, October 5, 2015


Once a month like clockwork I receive a text from my son's school that they have performed their monthly lockdown drill.  This text is to inform me that it is just a drill and I have no need to be concerned.

Except that I am.  As this is just another reminder of how much my son's autism impacts every part of his life.  I am scared shitless as I don't think he will be protected and safe during a lockdown procedure and it's by his own doing.

You see, you hear about teachers ushering their students into a closet or restroom.  All sitting silently side by side.  You know what my Kiddo is doing during this?  Talking.  Telling the teachers, staff and students that there is going to be a surprise.  A combination of my son's autism and innocence makes him think they are playing a game of hide and seek or it's a surprise party and they have are going to have fun.  He loud whispers to everyone around him to "BE QUIET!" while not picking up on the fact that he himself needs to be quiet in order to save his own life and others.

And I hate it.  I hate that this is part of his educational experience. I hate that autism and his communication and intellectual issues might be yet another safety risk in his life and the lives of those around him.  Kiddo makes a noise, he jeopardizes every person in the classroom closet with him.  He won't mean to do so but it is the reality of the situation.

My heart broke when his teacher first told me about this.  She didn't seem too fazed by it and from what I can tell, he's not the only kid in class that does this.  No concept of the situation and no idea that this is a drill about saving his own skin. I was told it was a skill they would work on.

Part of me is angry that this even has to be in my kiddo's life.  Like what the ever loving feck is this?  Don't we have enough on our plates?  Now I have this concern to worry about as well.  That he will potentially give away a hiding spot to those looking to do harm to himself and others. I thought working on life skills meant learning how to live independently.  Now they include trying to stay alive.

I hope like Hell that I will never even have to think this could be a reality but I can't help thinking about it when that text message announcement comes through my phone once a month.

I don't have a solution.  I don't even have a suggestion.  It's just another complication with autism involved and one that you never even think about it until it's in front of you.