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Thursday, January 28, 2016

Spreading #TeamQuirky

Middle school.  Sigh... I knew it was coming but... more sighing.  Sorry, I come from an Irish Catholic family.  We could medal in sighing.  It's what we do.

Being proactive, over the Christmas break I explain that this brand new adventure will coming soon and it was met firmly with a "Aw Hells No!" from the Kiddo. I can't say I am surprised.  He's been going to his same exact building since he was five.  All the sudden now that's changing?  When he is like the freaking #TeamQuirky Mayor of that joint?   But a long time ago he was five, he switched from a beloved preschool to where he is now.  We tackled that challenge and managed to survive.  We'll suck it up, Sunshine and get on board with moving on.

We start with taking a tour of the middle school.  One, to get a feel for the program and meet the teaching staff. Two, so I can take 385 or so pictures of the place. For I will create THE social story of all social stories with said pictures.  I have an app for that! No really, I do.  It's called "Kid in Story".  Best money I ever spent. The Kiddo responds well to social stories and I know this will help.

I will not lie. I spent a majority of the tour biting my lips trying not to cry or let on how very overwhelmed I am by all this change..  I love the little bubble of the elementary school that he goes to now.  This one middle school has kids coming from FOUR different elementary schools.  That's a lot of kids that don't know the Kiddo and all his #TeamQuirky ways.

There are few perks in our corner with this move.  The teacher he will have was the same exact one he had in early intervention preschool and we loved her.  Same with the school nurse, she moved over to the middle school from the preschool. There's also a beloved gym teacher there that he used to have that teaches there too. So there are some folks there that know him.  I kind of started to feel "Hey, maybe this won't be so bad.  He's ready. He'll meet even more #TeamQuirky people and it will be fine."

And we have plenty of time still at our beloved elementary school. I won't lie though. I plan on being a sobbing mess by the end of the school year.  They just know him so well.  They are also the ones responsible for him getting to this point of being ready for the switch.  Of course, I keep joking with the staff about who I want to transfer over with him and how I'm going to get their transfers in his IEP. (Sort of kidding. Sort of serious. Hell, can't hurt to ask.)

As of yesterday, we now have to add the custodian Mr. "T" to that transfer list.  Mr. "T" and the Kiddo are good pals.  I suspect part of the Kiddo's interest is Mr. "T" unlimited access to large vacuums (a focused interest/obsession for the lad.) and the fact that this man has engaged with the Kiddo in such a special way.  He leaves "Hi Kiddo!" notes around the school for my son to find.  You see, Kiddo is that student that's often in the hallways. (But with the purpose! He's sent on messenger jobs for the teacher.)

Yesterday Mr. "T" took this game to the next level and did this.

(Yes, I covered his name. You all know I keep something back.) 


Placed outside his classroom window on a snow bank.  The Kiddo pretty much had a giggle fit on a the spot when he saw it.  He is now making his own "Hi. Mr. "T" signs to hide in the school for the custodian to find.  When the teacher emailed me this picture and told me what had been going on I both cried and laughed.  I hope this man knows just how much I value this.  He doesn't have to do this.  It's not in his job description.  By engaging my son like this, he's teaching him valuable social skills.  He's making my son want to engage with people by teaching him humor.

Ugh! This is not helping me accept the fact that he is going to a new school come summer.  Stop being so freaking fantastic and supportive school! Can't he be the student with tenure? I know it's time for the Kiddo to go and start spreading the #TeamQuirky message elsewhere.  As much as I want to him to stay where he is forever, it's time.

Okay, I'll allow you to go to middle school but you have to stop growing taller.  I'll just push your head down. It'll be good sensory input.  



Wednesday, January 20, 2016

Why is autism so hard?

Being a blogger, I like to check my "stats" now and then.  See where in the world this blog is being read. (It tends to travel to farther and more exotic destinations than I do.) It also lets me see the search terms and phrases that somehow lead folks to finding me.  I don't think there's a week that goes by without someone looking for a french fry recipe stumbling upon this blog.  Boy, they must be really confused when they discover I'm not The Food Network.

But then this happened.


The question jumped off my screen.  I wasn't expecting to see it but at the same time I was not surprised by the statement.  Five words asking a question so simple and yet it has the power to give you an emotional gut punch.  Depending on who you are and what kind of day you are having, where that hit lands is different.

I wanted to write about this. I wanted to talk to this person about autism.  I wanted to pour them the drink of their choice, offer them a snack and give them a good old fashioned pep talk.  But then the Kiddo came home and we had to run to speech therapy.  Autism is sure hard on ya to keep a schedule.  It doesn't want to hear about your muse telling you to write some fluffy bunny inspirational bullshite that will make folks embrace and accept the #TeamQuirky lifestyle.  So off we went.  I promised myself I'd write something after the Kiddo went to bed.

Then life happened or more to the fact, autism life happened.  Despite a pretty decent day at school and a pretty kicking session with the magic speech therapist who graduated from Hogwarts, something shifted with the Kiddo right around dinner time.  All the sudden our night became very loud, very upsetting and very, very, hard.

And it was in the middle of this screamfest meltdown as I was desperately trying to keep my own shit together that I thought about the mystery stranger's question "Why is autism so hard?"  Good question, my unknown friend and reader. Why is it so fecking hard?  Why is it that my son cannot even tell me what was upsetting him? We suspect it was a YouTube clip that was setting him off. Even still if it did, why is it that he simply couldn't just close the clip and STOP watching it?  He had to keep watching it even though it was causing him to scream so loud I'm surprised the cops weren't called.  (Our neighbors are really understanding but I suspect one day they will have their "Enough" moment.  I should go bring them some cookies and possibly a few sets of noise cancelling headphones.)

And it's just hard on EVERYTHING.  Our house, our sanity, our marriage, our pets, our relationships with others and most importantly on my Kiddo.  Why does it have to be so hard on him? That's the part that really gets me.  I almost want to Google search the question "Why is autism so hard?" just to see what anyone else says to just make some sense of it.  Hey stranger, if you found something else online that answered that let me know!

This Kiddo gets dealt autism and a set of parents that don't have it.  Think about how freaking hard that has to be on him.  An 11 year old kid shouldn't have so much anxiety and frustration over something as simple as a YouTube clip that bugged him.

I guess the only comfort I can take in this is realizing that at least he and I are going through this hard stuff together.  That's something.

To that stranger that asked "Why is autism so hard?" and to any of you that ever thought it, I don't know.  I don't have an answer.  Just know I'm right there next to you wondering the same thing.  At least we all have each other.

Just hold on Kiddo. We'll figure it out.  


Wednesday, January 13, 2016

Hand Dryer of DOOM! The Sequel.

You know, you work hard.  You have a problem before you but Dang nabbit, it needs to be addressed. You consult with your kid's teachers, therapists, support staff, and other parents.

The problem isn't going away and since that whole "I can never die" plan of mine isn't going to pan out like I had hoped, it was time we tackled THE HAND DRYER OF DOOM!!!!  (cue the dramatic music)

In an effort to save the planet for our kids, science created a hand dryer for the public bathrooms of the world.  Unfortunately, in order for it to work it must contain a motor in it that sounds like Satan's screams from the bowels of Hell.

And it's not enough to simply tell the lad, "Oh, just wipe your hands on your pants.".  All it took was hearing some stranger using it once in the restroom for him to be scared shitless at the mere sight of them.  So that doesn't work.  Not to mention he's getting older and seeing as I am a "she", he now has started going into the men's room by himself. (With me standing in the doorway speaking loudly to all in there that "Mom is RIGHT OUTSIDE. You call if you need help and fellas you don't have anything I haven't seen before." So yeah, I will have no qualms about walking in there if need be.)

So what did work?  A hair dryer.  Yep, you read that correctly.  Kiddo's former teacher "Mrs. M." is one smart lady and she started using one on the kids hands after they washed up at school.  Now, I can't say he's in love with the thing but she got him to learn how to tolerate it.  That's all a girl like me could want. The day she emailed me this picture from a class trip to the mall made me sob.  Like full on ugly cry.

Miracles can happen.  Even in the bathroom. 

The Exlator brand! I know you know what a big deal that one is. Hella Loud! 


BUT just when you think it was safe to go back into the bathroom, check out this muthatrucker.

"Hey, her autistic kid finally got over the fear of the hand dryer.  We better take that idea and LEVEL UP!" 


Stick your hands into the noise???  Are you serious? I mean, just look at this thing. I don't even want to put my hands into this device.  Doesn't it look like some sort of bad Science Fiction movie torture device.  I just got him used to dealing with it with his hands under it. Now I have to teach this?  Oh no. Nope. Never gonna happen.  I am going full on teen aged girl wearing UGGs and sipping a Pumpkin Spice Latte, for I literally can't even.   You will just have some wet hands Kiddo.  That may make some of your fries soggy but I'm sure you will solider on.

I saw this in the restroom at the movies and noticed that no other women were using it.  There were also paper towels and I watched lady after lady walk right past this thing.  Happy to go use a paper towel and kill a tree.  There are limits to social awareness to environmental issues.  This thing crosses that line even for the neurotypical people.

There are some things that even a side of fries can't fix.  This new hand dryer is one of them. I'd tell it to "Blow me" if I wasn't so deathly afraid of it.  ;-)


Thursday, January 7, 2016

OUTRAGE!!!!!

The amount of anger and outrage on the Internet on an given day could probably power a small city at this point.  Science, it's time to find out how to harness that energy source.  Get on that.  I could give a crap about you finally inventing a hoverboard. (Which if you ask me ain't really one.  The hoverboard Marty McFly used never blew up on a regular.  Just sayin'.)  How about we all work on getting to a point of collective chill.  Is that possible?  I think so.

What do I do?  I pick and choose my outrage.  I have to do it.  It's a matter of survival. I am the Queen of circling the wagons to protect the last shreds of sanity I have left.  Let me give you a few examples.

Every few months a page will pop up on Facebook with the sole purpose of rattling the autism community at large.  It will have some name like "Kill all Autistics" or "Autistics are murderers".  Some crap like that.  Anyway, I think that's probably the ONE thing the whole autism community can agree on is that it's awful.  (See guys, we don't have to fight all the time! It's possible to agree on something!) A few times I have reported it to Facebook and asked you all to do the same and we get that beotch "French Fried" and shut down.  We feel like we got something done with our collective outrage and wait for the next time it will pop up.  Cause it always pops up again.  That dude is a one trick pony and yes, I said dude.  I really think it's only one guy.  He uses the same 5 pictures and has the same token outrageous statements each and every time.  Troll boy, try harder. Your troll game is growing stale.

However, the last time he did it I completely ignored it.  Why? Cause I'm done feeding that attention whore.  I really am.  I'm taking a page out of any parenting book and "planned ignoring" his ass.  I know a bunch of you were emailing me and I didn't respond and you were probably wondering "WTF?" about it but that time I was all "NOPE". I'd rather on doing something else than having the same exact fight again and again.  I don't mind if you all want to pick that to be outraged by.  Knock yourself out. No, don't do that.  Go knock that guy out.  Or some sense into him.  I'm just gonna sit over here with my cup of coffee and try figure out how I'm going to organize my first ever #TeamQuirky meet up.  (Goal for the year. I typed it.  So now I have to hold myself to it.)

You know what I am willing to give my outrage to?  Autism and wandering because holy crap!  That is worth my outrage.  Our kids are dying.   That is worth me screaming about it from the fecking roof tops.  I cannot stomach to see another missing child with autism alert go through my social media feed because I know what the follow up story will be.  No more!  That's another reason I did that Autism and Law Enforcement Round table last month and hope to do more.  I'm focusing my outrage towards action.

Oh, here's another thing I didn't know I was suppose to be outraged by but thank you dear Internet, always someone willing and ready to school me. ;-)  Inspiration Porn.  Did you all know this was a thing?  Or at least that's what some folks call those feel good viral stories that make the social media circuit.  Anywho, you know what? If reading nice stories about people being nice to other people isn't your thing, that's cool.  So be it but some of the rest of us (i.e. ME) like to see a bit of good in this world that on average is rather craptastic on any given day.   I'm not just talking about autism themed stories.  I'm talking about all the viral stuff.  The soldiers returning from deployment.  Animals being adopted from shelters.  Yadda, yadda, yadda.  You know what I mean.  I need those moments of win.  You don't like 'em? Fine Don't give them your "Click".  Scroll on. Be angry somewhere else.

The world in general can be pretty horrible and yeah, being nice is a rarity these days.  That's just the cold hard facts.  Folks DO need reminding to be be freaking human to each other.  In fact, I don't even mind that you are outraged by this inspiration porn.  That's totally you right to be. I'm just going to be over here with my opinion. You go over there with yours.  It's cool, dude. It's cool.  You see that old motto of "Agree to disagree" means just that.  Not "I'm going to say that but at the same time shame you into seeing things my way."   If that's your way of doing things, please go have a seat with the rest of the miserable people.  I'm not at that table.

When it boils down to it, the only thing I will be outraged by is any restaurant running out of fries.  In this house, that is worth a Henry Rollins induced smack down.  Anything else, pfffft.  Whatever.  I got laundry to do.  ;-)

Opps! I forgot to be outraged and probably to take out something to defrost for dinner. 





Wednesday, January 6, 2016

Boundaries

"Come on Kiddo. Out you go. I'm getting dressed.  I don't need an audience. The judgy lady on the cover of this new pair of Spanx is enough." and I usher him out my room and close the door.  When will this Kiddo learn this personal boundary?  He's 11.  He really doesn't need any more issues. I think seeing his mother wrestling into her over the shoulder boulder holder would scar him for life.

But then again, this is the Kiddo who walked into my living room full of company on a Thanksgiving naked because it was according to his schedule "Shower time".   While a toddler running around with their cute little baby butts is adorable, tween boys with big man feet and hair, not so much.  So we really have to figure this out.  Like now!

So in my head I'm already writing the social story that might work for teaching privacy and respecting one's personal space and what's appropriate and not and yadda, yadda, yadda.  Damn, I write these things so much I'm dreaming in social stories.

It needs to be done though cause eventually he will not live with me.  Although I hate even thinking about it, the reality is there.  Someday he will find a placement in a supported living environment.  I mean, I have my solid and totally reasonable plan of living forever and never dying but it's good to have a back up, right?

Plus, we really cannot be doing the whole walking into a room of people with no clothes on thing here either.
But it's not as easy to explain really why I don't need entourage getting dressed as I am still having to help him get dressed most mornings.  How do I explain "You do it alone." when he still can't.  Although some parts have improved.  He clearly proved his complete independence with stripping off everything when he announced "Shower time" to a crowd.  Left to his own, clothes still go on backwards, in the wrong order or just picks out shorts in the winter or sweaters in the summer.

Some things I leave be.  Like when he wears a t shirt over a long sleeved shirt.  He's got an awesome t shirt collection. He does enjoy showing them off to folks.  But when I see that his underwear is on backwards, yeah, I'm going in to fix that.  Cause sensory wise, how freaking uncomfortable that would be for him.  I'm sure, no, I know that leaving that could possibly set a bad emotional mood for the day.  I mean, wouldn't you be kind of ornery if you were walking around with a wedgie all over the place?  I feel this means making some picture schedules too.  Boy I'm gonna busy.

Off to the laminator! ;-)


Should I be concerned Kiddo makes fashion choices based on "What would Jeff Spicoli from Fast Times at Ridgemont High wear?" Questionable patenting or parenting win? 



Wednesday, December 30, 2015

The break is breaking me.

I will admit it. I'm not just a mother.  I am what can best be described as a "Smother" (Props to my Kiddo's speech therapist for turning me onto that word.)  He is my only kid.  Add autism to boot and I hover over that kiddo like nobody's business.  I am hyper aware and probably more anxious than him in new situations.  I am always living in a state of perpetual freaking out.

The older he gets, the more I realize this behavior of mine is not doing either of us any favors.  Despite my plan never to die. (My current plan for the future. Rational, right?)

No time like the present to start pushing both myself and the Kiddo outside our comfort zone though to start building more independence.  Inspired by one thing.  This winter break which is going to break me.

I get it. He's off his school routine where every minute of the day is planned out up to and including when he goes to the bathroom.  There are also no therapies this week because those folks are selfish and want to spend time with their families. Pffft. Whatever!  So we got the perfect storm for a meltdown brewing daily just hovering over the house every single day.  Add the excitement of "SANTA!" and tons of family gatherings with folks that don't always get the #TeamQuirky lifestyle. ("You brought a Happy Meal for his dinner???") I guess you could say that both the Kiddo and I are out of fucks to give.  It's now Wednesday... Gawd! It's only Wednesday?!?!  Crap! I still have a lot of week to fill up.

I found myself online yesterday researching day camps for breaks.  Cause despite me setting down some plans for the boy this week, it's still not enough for him.  Even scheduling "Okay, now we're going to have iPad time. Or DVD time. Or play with toys time." ten seconds later he's on me like a rash to be his personal cruise activity director.

So what happens then?  He goes to his coping skills.  Stimming.  Which would be fine if it wasn't non stop screaming like a possessed howler monkey who just pounded back a couple of Red Bulls.   And it's not just him screaming. Oh no, my boy is a scream connoisseur.  When he is not shrieking like a banshee for fun and sport, he's looking up YouTube clips of other people screaming.  Perhaps to be inspired or just enjoys the sound. I'm not sure.  It's a sensory thing I just do not get all around.  Meanwhile I can't use the blender in my house to make a smoothie because that's too loud.  Huh?

Just looking up a program where I'm pretty sure he would enjoy fills me with heaps of guilt. Like I can't hang and handle this boy for a simple winter break?  What the hell is wrong with me?  I used to deal with autism as a job before I went pro with the kiddo.  Yep, I signed up for it.  Of course the difference being I clocked in and then after a while, clocked out.

And I know going into each and every break with the Kiddo what's going to happen.  That eventually we will both hit a point where we are sick of each other and just miserable.  It just seems like we hit that point a lot sooner lately.  Maybe if he had a sibling this would be different.  I don't know.  I just know he's needing a structured routine with multiple social interaction that this one mom show cannot provide.

I mention the idea of signing up for this local camp thing (It's all throughout the year) to the husband unsure of how he might respond.  He immediately said "Let's do it." He was ALL IN.

I just sent in my email signing up for more details.  Seems right to do but also scary.  Mostly right though.  Could be great. Could suck balls.  Only one way to find out.  I just know when to hold 'em and when to fold 'em.  I need help.  I'm hoping this can do it.

Okay, it's not all screaming. Sometimes he's quiet for like a hot minute.  




Wednesday, December 23, 2015

Me too.

Sometimes a parent needs to hear "Me too.", including the parent writing this.

Be it about an experience, a feeling or a result, who knew two words could pack such an emotional punch? A simple "Me too." can make my day.  I feel less alone.  I feel like I can go on. I feel like autism is the trip with my tour guide that I was suppose to take.

But for every "Me too." comes a question.  "What will happen when your kiddo reads all this some day?" to that I say honestly, "I don't know but I'll be writing about that too." Cause I will.  This blog forces me to be honest about subjects I sometimes would prefer not to address at all. You think I won't address that issue too?  Let me put it another way.  It would be the greatest gift in the world to me if my Kiddo could read this one day and understand that it was all about him and me putting our lives out there.  I welcome his outrage and anger.  He has every right to those feelings and any others that might bubble up about it.

You think I'm first mom to write about her kid?  HA! That's been going on since forever. I would venture to guess that some of those prehistoric cave paintings were some parent griping about their kid not cleaning up after their pet Wooly Mammoth or some shit like that.   The autism mom blogger isn't a new concept.  We didn't invent the wheel.  Even if I stopped, five new blogger are born.  I know this because they usually send me their stuff to read.  (I swear guys. I'm trying to read it all. Be patient with me! My family occasionally likes to see me without my phone in my face.)

I know I personally need the "Me too." because it's sometimes made all the difference in my behavior and attitude.  I still wrestle with how I feel about autism daily.  I have to give myself multiple pep talks A DAY to get through it. In fact, if you ever see me writing a note on social media pages that sounds like a cheerleader who has double fisted a couple of Red Bulls, it's because I needed to give myself a pep talk to get through that day.  Cause this shit is hard and you will never convince me that it's not.  Nor will you silence me into shame for even thinking it.

And just when I am ready to lose my mind, my Kiddo has a wonderful way of reminding me he is just as confused about this all as I am.  We hug it out with a big "Me too.".

Nobody is wrong with feelings.  It's what you do with them that counts.

Sneaky ninja hugger Kiddo. Always making me forget what I was upset about.