Tuesday, February 23, 2016

Make your peace with autism

You know, autism awareness is dandy but I think we all can agree that autism acceptance is even better. Perhaps I should save this post for April when good old Autism Awareness Month is around but 1) I'm not one for playing by the rules. 2) This post would have to compete with a flurry of puzzle piece memes and lights of various colors (Cause no one can agree on that as the autism community debates are like online gang wars for turf rights.) 3) Because I felt like writing it now. So there. Pfffft! *sticks out tongue*

Still wondering why I am choosing to do this now?  Cause I practice "Make My Peace With It" as a religion. Seriously. There are thousand things about autism and all it's quirks that I have to make peace with daily. I might as well declare it a religion as opposed to a philosophy so I can get those sweet tax breaks.

For example, the Kiddo often tells me about things that have happened sometimes weeks or months later because it is only now that he finally could organize his thoughts and speech together to do so. I feel like I am always running behind knowing what's going on with him but I made my peace with that because there was a time he couldn't tell me anything at all. So he tells me how the art teacher was out sick one day in December in February and how his class had a substitute teacher instead. He did it in his own time and in his own way.

I've made my peace with what other folks will think of me and what I do to provide support and treatment for my Kiddo and his autism. I don't care if you decide to feed your kid only bean sprouts and listen exclusively to ukulele music for an autism treatment. That's your business. I would not insult your choice of autism parenting. that's on you. Not me. Do me a solid and do the same for others.  That's how you can make peace with that.  See? It's not hard. Telling someone that they are disgusting or abusive because they chose a treatment method you don't agree with, you're an ass. Plain and simple.

Yes, I am aware of the irony of me judging you for judging. Consider this. Do you want to sound smart? Then don't sound like an enormous douche canoe.

Next, the waiting. There is so much freaking waiting with all things autism.  I will not lie.  That waiting and being patient shit is not my forte. Never has been and yet here I am with the autistic kid. Talk about a freaking daily life lesson of having to make my peace with it.  Waiting for him do a thousand different things that other neurotypical kids did ages ago.  Waiting for doctors to call back. Waiting to make sense of insurance stuff.  Waiting for emails from school. Waiting in waiting rooms for therapies and then waiting to see the effects of said therapies.  Oy vey!  The waiting! I'm waiting for when I snap.  (True confession. I have already. Lots of times. Hey, I'm human.) I have to make my peace with waiting and that's a daily struggle. The payoff now and then is what reminds me the waiting is worth it.

Then there will be people pissed at you for not having made your peace with autism. Mostly autistic adults who read blogs and social media posts about autism and I really can't blame them for being mad about what we parents might be going on about.  I mean, think about it what it looks like to them. We probably come off like a bunch of asses. It's also probably really hard for them to properly communicate what it is they go through with their autism or what our kids might be going through because they get it. Couple that with their own communication challenges (You know, the ones our kids have.) and Theory of the Mind issues (You know, the thing where our kids have trouble seeing and understanding another person's perspective. That doesn't go away with adulthood.), well, some social media slap downs will occur. As I said before the autism community can't even agree on a freaking color to celebrate autism awareness. So there is bound to be debates, fighting and straight up "Beotch, let me tell you about yourself." moments online.  I've made my peace with that.  Someone will always be there to disagree with me. Sometimes that person is even yourself! That's okay though. It is what it is.

What helps me feel that I can be okay with all this autism stuff is just remember this is all a process and a practice. Ever changing. Sometimes I will be all "WTF AUTISM?!?!" and other times I'm just going with the flow. The scheduled flow that's laid out very carefully in the morning that is. ;-)

Peace out #TeamQuirky. We're gonna be okay. I once made my peace with the idea that the Kiddo was never ever going to be able to write. This year he surprised us big time by not only doing it BUT wanting to do it. So you just never know.

Clearly I need to make peace with the idea that the Kiddo has no respect for the blog brand. "I love eating pizza." What the Hell Kiddo? No fries?!?!

Monday, February 15, 2016

Top 10 Mistakes Autism Parent Newbs Make

Oh Newb, I love you.  I get you.  I see myself in you in many ways.  I've even written about you all before in this: A letter to the New Autism Parent

But we need to talk.  There are some common themes that keep coming up that you are laying at my doorstep.  I don't know what I'm making for dinner tonight let alone what I'm doing when it comes to all this autism stuff.  Now sit down and let's have a "Come to Jesus" conversation, shall we? Because you are really wasting a lot of energy freaking the Hell out. No, you are and I know it cause I've done it.  I made this a list.  Parents love them some lists.  

1) Not doing your research.  Many of you write asking about how to get an autism service dog or how to manage a GF/CF diet.  That's great but I have to ask, why?  You want to feed your kid a certain diet?  Did you just hear a sound bite or did you take your kid for allergy testing?  Same with the dog thing?  What is it you think or need that dog to do?  Are you aware of the extra work taking in another living creature into your home will be?  Even though they are a "working dog"?  Both of the above mentioned things are also expensive as all get!  So you best choose wisely before you leap in.  Read up on this stuff before you commit.  Learn from other autism parents' empty wallets. 

2) Thinking there are autism milestones.  Newsflash,your kid sets these on their own.  Stop comparing your kid!  It doesn't matter when my kid talked.  You will drive yourself freaking insane if you ask every autism parent you meet that question.  You will also drive them insane and let's face it, we don't have that much wiggle room there to go.  So let's not rock that boat.  This autism tenured parent wants to remind you that even if your kid never speaks, that doesn't mean they have nothing to say.  They are just not going to say it in the way you expect.  

3) Chill the eff out about the potty training.  Like right now.  Especially if you are comparing your four or five year old to the neurotypical kid across the street.  Come on now. You all know better but there you are getting hung up on it.  Let it be known as I type this blog I have another set of sheets in my washing machine right now.  My kiddo is eleven if that helps put that in perspective for you.  Am I thrilled about it? No.  But it happens.  So there you go. 

4) K.I.S.S. "Keep it simple, stupid."  When talking to your kid, keep it brief and to the point. Remember, communication isn't just them being able to say stuff.  They have to process it too.  Keep the sentences and directions clear. "First this, then that." stuff works for a reason.  Cause it's clear as feck. 

5) There's a difference between a meltdown and a tantrum.  Which you can read about here: Meltdown vs. Tantrum You have to accept once a meltdown starts, you just got to ride that shit out.  Keep them safe because there is no turning that off on a dime.  So just buckle up and know eventually it will end. I get it. You try to talk them out of it.  Nope.  Can't be done.  I forget that too a lot.  

6) Not asking for help.  Now WTF is with this?  You don't win a medal in being a martyr.  Remember when you told folks about your kid getting diagnosed and they said stuff like "If there's anything I can do, just let me know."  Well now it's time to take them up on that shit.  Seriously, you will be glad you did. 

7) "My family/friends don't understand our life."  Believe me. I get it.  I still deal with it.  There's only one solution for this problem. TELL THEM! Cause I'm betting you didn't fully get what was ahead of you at the start of all this.  I still don't know most days but I know opening my mouth will always work when I tell someone why something won't work for us.  I can't get mad at someone who doesn't live with it that they didn't know something.  I can get mad at myself if I didn't advocate for my Kiddo and tell them.  That's on me.  

8) It's not a case of fixing it or them.  If anything, it's a group effort.  You included.  You all learn as you go.  Collectively.  

9) Not turning off autism now and then from your life.  Yes, I told up top to do your research but you have got to learn when to walk away from Dr. Goggle and crew.  Autism isn't cutting you a paycheck to be it's bitch.  You want to flake out and watch "The Bachelor" one night instead of reading a Temple Grandin book, I do not judge.  I'm betting 90% of your social media feed are memes, stories and blogs like this one.  You deserve a break.  Consider reading this one post your autism work of the day.  

10) Cheer up. Seriously. I came to the conclusion a few years back that if I was going to get laugh lines on my face, I might as well have fun earning them.  This doesn't mean I'm in a permanent state of HAPPY.  I use my humor to cope.  It's survival and it's a skill I am gladly teaching my Kiddo as well.  Cause he's saddled with a couple of neurotypical parents who don't fully understand the pure joy that is listening to "The Lion Sleeps Tonight" for the 8355 time that day.  I joke and find the silver lining.  The mood is contagious. If I'm a miserable git.  Guess what he's going to be?  

So if we ever meet and you see me giving you some side eye, it's not because I think you are doing it wrong.  I just hate to see anyone making stuff harder on themselves than it needs to be.  Newb, I've been there and I continue to be there.  

Autism with a side of side eye.  

Tuesday, February 9, 2016


How did my day start like this?

Only to end like this?

And that wasn't even the end of my day.  That was around 2PM, when my son decided to beat down the locked door to the bathroom where I was hiding to keep him from smacking me.  You see, meltdowns around here have not been fun.  Well, not like they ever were a hoot but Kiddo has decided it's just dandy to spread the misery and I am the subject of his rage as of late.

Oh I know what some of you are thinking?  The "How did that happen?" or the "What did you do?".  Cause there's always has to be some reason why stuff like this occurs.  Making sense out of autistic meltdowns as to help you from keeping them from happening in the future.  Well today's rage fit was brought on by an old DVD player that finally went kaput.

Now we are a #blessed family and have more than one DVD player in our home but in Kiddo world, he had to watch his DVD of choice in HIS room on HIS player.  It was one of those "Autism Rules" I can't mess around with, despite me pleading with him to try to watch it somewhere else.  Not good enough and combined with me insulting him with the suggestion of watching it in another room, well he just had to remind me who's the boss around here and it is clearly not me.

As I sat in the bathroom watching the door shake from his pounding, I found myself wondering the say thing again and again.  How?  How did we once again get here?  How am I supposed to just ride out this rage one more time and NOT have it affect me in the long term? That's getting very hard to do.  How was it possible this was the same Kiddo who just a few hours earlier was so sweet and kind to one our dogs who is nursing an injured paw?  How did he go from laying on the floor gently petting the dog to pounding his fists on this door till he busted the lock?

How did my mom know then was a great time to stop over to drop something off? I don't need to know the how, I'm just glad she did.   It was enough of a distraction to get him to snap out of his rage.

She offered to watch him for a while but it was the first time I didn't really feel comfortable with it.  Not because of her but because of him.  I didn't want her to be the subject of his rage if the meltdown came back.  Cause I have been around when then that has happened.  It's like he just recharges a bit and goes hard back at it again.  Plus, I felt like it would be only reward his behavior.  "Freak out on Mom so bad that you leave her bruised and break down doors.  Win a free trip to your grandparents house where you know it is the headquarters of spoiling."

Then I watched him try to "fix" the door.  He became very fixated on it.  I wondered if meltdown round two was coming because it wouldn't "fix".   Luckily by then it was time to leave for speech therapy.  I was quite tempted to bring booze with me for his therapist as a precautionary.  I warned her from the start it was a rough day and one hour later when she walked back out with him it was clear by the look on her face that she had earned every penny of her paycheck during that session.

How I am supposed to keep doing this?  How am I supposed to act like this stuff doesn't bother me?  How is this rapidly growing Kiddo going to function if I'm not around?  How do these types of setbacks keep happening?  How can we go from peaches and cream to crap in about two seconds?  DVD players break.  The world is just cruel like that Kiddo. How about an early bedtime tonight?  You're gonna be up at the buttcrack of dawn anyway.  Yeah, I think you and I both need that this evening.

Cause I'm not sure how I'm going to do this all again tomorrow with a smile on my face.