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.