Thursday, June 25, 2015

Being "off" means being "on".

Before I went "pro" with the Kiddo, I used to work with special needs kids.  Many of which had autism.  I was what you would call a "job coach"/pre vocational instructor.  I really loved my job even though the idea of returning to that sort of work again makes me want to ball up in the fetal position and rock in the corner.  At the time, I loved it.  The students were awesome.  Even the "challenging" ones.  I worked with a variety of ages and abilities.  My department and I had to do a lot of trouble shooting straight on the spot to make things "work" to accommodate our students so they could be successful.   We were like MacGyver with what we could do with a roll of blue tape, Velcro and post its.

Since these kids were in school, they had all the other school stuff that went out throughout the day.  Tests, therapies and gym.  They also did the traditional fun stuff too like parties, field day and class trips. That's also when stuff got tricky to schedule with my department.   Since many of the kids were being brought to off campus to job sites we had acquired for them, they had REAL work to do when they got there.  If a student was sick, it was an excused and the job sites always understood.  I usually went with more than one kid anyway and they could handle it. (With a bit of help from the job coach.) We did had another situation to deal with it.  They wanted days off.

You see, the kids saw their classmates going to field days, parties and class trips and they wanted to go too!  Rightly so, they were still kids.  The job coaches understood this.  Our supervisor directly above us?  Well, not quite as much.  For lack of better words, he was kind of an ass about it.  While I agreed with him on the "You must put in a request and file the correct form." preparing them for the real world aspect, what they could use them for was an area of great debate between him and I.   (He preferred "Never" due to his wildly shifting personality. Yeah, he was gobs of fun on the job.)

But until my dying day I will never forget one teacher who just lit into this guy advocating for her student and his well deserved day off for a class trip.  My old boss was like 6'4.  This teacher was barely 5'2 and yet the weight of her words smacked this guy down hard.

"He'll go because otherwise he will never get to go.  Because his family does not take him out.  At all.  They  don't do it so we will."

BOOM! Mic drop moment.  I remember the dude mumbling "Yeah okay but just this once..." and slinking on out of there.  I don't really remember it being an issue that much ever again.  All these years later I still think about it.  Especially when the last thing I feel like doing is dealing with my Kiddo AND going out somewhere.   I don't ever want to get to that point where he never goes anywhere unless surrounded by an entourage of support staff.

At the time I remember in my late 20's no kids clueless way thinking "Well why don't they?".  In my early 40's with Kiddo wisdom, oh I get it.  I sooooo get it.  This wasn't a diss on this family from this teacher.  This was plain old sharing of information and saying why it was needed.  How many stories do you hear about teachers that are so clearly phoning it in.  Barely do what is needed to be done. Not this teacher.

This is a teacher who planned a class trip with the idea that ALL her students would go.  No matter what.  They're day off was really to help turn them on to the world around them.  Now, there is no doubt in my mind that she and her staff earn every penny of their paychecks on trip days but at the same time, they knew what they signed up to do.

My own Kiddo now goes to a school with a group of teachers who do the same.  All the kids go because they ALL deserve to go.  Sadly, some might not go out any time else.  It just is what it is.  I still thank teachers like this who work it out to make it happen on their watch.

Only with autism can you be "on" even when you are trying to be "off."  :-)

Wednesday, June 17, 2015

Shutting up the hecklers.

Much like a stand up comic, I have dealt with my fair share of hecklers.  Be in online or in public.  Comments said to us about our child given with some serious side eye glare.  The even shadier ones are whispered under their breaths in hopes we don't exactly hear it but everyone around them can.  The online ones are usually even harsher as folks grow a pair of brass ones hiding behind a screen, feeling like they got that last word in when they clicked their mouse.  They too, are doing it more for the crowd that reads it than to the person they are aiming it at.  Just my opinion.

"Look at me! Being all badass online or in public. I can say very rude things when I have no idea about all the variables going on!" Really? Your mom must be SO proud.  Shame she can hang your insults on her fridge.  Maybe she's savvy and has a smart phone so she can whip out your tweets to share with her friends while playing bridge.

I'm curious Know It Alls, how does one teach an autistic child how to do things without taking them out to DO THE THINGS?  Cause I'm pretty sure that's exactly how your parents did it to you.  Some life experiences can't be taught with a firm threat to tan their hides or any of the other bullshit clueless violence that is often suggested by you as the catch all solution to all behavioral problems.

Some of these things are scary to our kids.  Didn't you as a kid have things that scared you?  Maybe you were told to "man up" or to "stop being a cry baby".  You might have been forced to face your fears by your parents. Maybe now, since you know everything, you realize your parents did you a favor by making you face those fears.  So when I take my kid to the restaurant with the loud blender that could potentially scare the crud out of him, that's what I am doing. Maybe he won't "get over it" but he will start to get used to it.  He'll start using those coping skills that I'm constantly teaching him at home out in the real world.

You see, I am all out of fucks to give to your opinions and the only true way I am going to get more and more folks "autism aware" is to keep taking my kiddo out to do all the things I would have done if he was a typical eleven year old kiddo.  I already know that we who do this are making a difference. I see it just by being a loyal customer to several businesses that quickly learned his name before mine.  I'm okay with that too.  He's like Norm from "Cheers" in certain establishments and I'm more than happy to be a hanger on in his entourage. I simply do not care if this bothers you.  You don't own the planet.  I'm not living like a hermit just to please you.  You're going to judge my parenting either way so I might as well do what we feel like doing.

If you are an autism parent reading this, take your kids out.  Screw anyone, anywhere who's biggest goal in life is to be the person that picks on a family of a special needs kid.  Way to set that bar high for yourself, harassing stranger. You're a real thug and I'm sure would do well in prison.

And to the online trolls, please share with me the brand of router you use for your Wifi.  Apparently, it picks on the signal really well under that bridge where you live. You would think with access to the entire global online community, you might actually learn a thing or two.  Or at least some better put downs and insults.  Seriously, I'm beginning to think it's just the same group of four or five people that work at "Internet Trolls Inc." because it's always the same old blah, blah, blah with you guys.  Time for a team meeting for some brain storming because honestly, we bloggers just refer to you as badges we unlock when you find us and comment.

You know what I have planed in a few weeks with my family?  A vacation!  Yep, that's right mofos. I will be bringing our own style of autism awareness across state lines! Time to bring this show on the road.  We work hard to make our kiddo ready for the world and part of that is travel.  So we're going to be in your restaurants, your hotels, your tourist attractions, and all the glamorous rest stops for potty breaks along the way.

Because I don't care how much you heckle me or my Kiddo.  We won't stop living and learning.  It's a shame you don't think the learning part applies to you.

Friday, June 12, 2015

Chip off the old block

I see so much of myself in my son.  It's not just a looks thing.  It's an attitude. It's a personality.  Hell, maybe it's even some of that autism of his I'm always talking about.

This autism.  I'm not just thinking it's his alone anymore.  I'm really seeing more and more of my childhood through him.  Now don't go thinking I'm just being dramatic or trying to corner the market of his neurology.  I can't help but see what's in front of me and I don't seem to have the social filter to keep it to myself any longer. I don't know if I am on the Spectrum but I do know I relate to what he goes through quite a bit.

My eye contact?  Sucks.  It physically pains me to do it, even with people I know.  A stranger?  I look at their hair or their neck.  I never started to realize that this might be what my son feels till the past few years.  So, I don't give him too much heck about looking anyone in the eyes.  I'd deck someone if they told me to look them in the eyes.  Why should I make him?

Black and white thinking? Yep! This has been a huge problem for me in relationships.  You cross me once?  Dead to me.  I always chalked that up to a stubborn streak of Irish breeding but now, yeah the the black and white thinking isn't so black and white to me anymore.  So maybe Kiddo's ALL IN obsessing on a person out of nowhere is kind of like me when I meet a new person and Facebook stalk every single thing in their profiles.  (Now all my Facebook friends are clicking "Block" next to my name.) You post 75 new photos of your vacation.  I'm looking at all of them.  You share an article on a view point I hate. I have a panic attack wondering how I let you into my life and now I have to hide you from my feed so you no longer break my heart.  That's kind of extreme.

Sensory issues?  Oh Baby, I have those in spades.  I hate wearing shoes which is weird because I love looking at shoes. Wearing them for longer than an hour, I start to hate my life.  Clothing? I hate jeans.  They feel rough and hard to me.  I'm watch my kiddo twirl his hair and while I am doing the same exact thing.  His eating issues aren't just about taste.  It's texture and that's exactly like me.  I have been labeled a picky eater and I find myself resenting it.  It's not because I'm just fussy and neither is he.  So, I have a lot of sympathy with my Kiddo when a texture combo just freaks him the Hell out.  I find myself talking him through a bite like a coach. "Sip some water.  Wash it down.  Take a breath. You're okay."

What really started sealing the deal for me is when the Kiddo's former teacher introduced him to typing as handwriting was just not happening.  ("Handwriting without Tears" my ass!)  My handwriting also is the stuff of legends.  It BLOWS.  My visual tracking stinks and so does his.  She went with typing and OH MY GOD! The words are now flying out of him now.  His reading, spelling and speaking have all improved. He is able to express himself typing in ways I never dreamed.  One of his favorite thing to do is to sit down and write a letter to someone and I get to see all the stuff that is going on in his brain.

Writing a letter...blogging.  Not too different is it? ;-)

This blog has helped folks understand him a bit better and perhaps now even me.  It is impossible for me to ask for help or talk about the real nitty gritty deep emotional stuff that comes with this life.  Yet, I sit in front of this blog and just let it hang out.  When someone I know reads it and wants to talk about it? Oy vey, I get so tongue tied, I can barely get the words out.  (I've noticed most folks text me now. Maybe they've figured that is easier for me too.)

The more I think about what I grew up with and what I saw the Kiddo doing as a baby, the more I think it was right there in front of me. I never saw it as a red flag.  Here I am thinking "Well I did that so..." I once had a neurologist ask us if we had an "quirky" family members and it never dawned on me to say that I was one of them.

When you go through forty something years of life being told your neurology is one way, it's really strange to think about it being another.  I still don't know if it is. I haven't been tested or screened for it.  I"m not sure if I ever will go for formal diagnosing as I really don't need it to prove what I know about myself.  Perhaps if I worked outside the home I might just in case I needed some proof for accommodations.  As my "Boss" has autism, The Kiddo is pretty cool with understanding my quirks.  Of course, there are times when our sensory needs battle each other.  (Aka his need to play the stereo, iPad and TV all at once versus my need to use the blender without him having a screaming raging meltdown.)  We'll figure it out though.  We always do. I'm just going to embrace the idea that maybe I understand him better than I thought I did. I want him to know "Hey Kiddo, Mama gets it. Maybe not all of it but more than you think."

At least we both agree about ordering another side of fries.

And I'm betting if you are reading this now, you might be thinking you relate to your kiddo more than you thought. Maybe that apple didn't fall far from the quirky tree? ;-)

Wednesday, June 3, 2015

Shaken not stirred

Did I ever tell you all about the time I sent my son to school smelling like a martini? No?  My last post was really depressing.  I owe you a funny one. Let me fill you in.

The Kiddo was about three at the time.  It was a school morning and about twenty minutes before the bus was due to arrive.

Around this time with my son, he was pretty non verbal. No words at all. Lots of sounds and certain noises that we knew what he meant but no real functional conversation.  We still hadn't found medications that helped at this point.  He was beyond being always on the go.  This Kiddo was the Tasmanian Devil.  A whirling Dervish.  We weren't even using melatonin yet so I think you can understand the Zombie like state that my husband and I were in with our sleep deprivation.

Our house at the time was slowly being destroyed by him.  The lock down we had it on with gates and barricades was starting to fall apart.  He was getting too fast and too smart.  He was like an autistic ninja.

He was out of my sight for two minutes. I foolishly went to switch a load of wash to the dryer but that's all it took.  The Kiddo stormed past baby gate that blocked access to our bar.  Seriously, he took that thing down like The Berlin Wall.  Instead of dancing on top of it to the music of David Hasselhoff, he decided to investigate what was back there.  That's when I heard the crash of glass that made my blood turn cold.

I ran in there to see my sweet toddler boy surrounded by broken glass and a large puddle of Vermouth.


 I scanned for blood or injury and breath a sigh of relief that he's okay but then I take in the mess that is before me and you want to pass out with a drink but I can't because it's 7:50 something in the morning. Not to mention my Kiddo just killed the bottle of vermouth.

I snatched him up, stripped him down and gave him the quickest baby wipe bath ever.  I'm throwing on new clothes because god dammit I had been up since "dark thirty" and I knew the importance of the routine.  His Vermouth soaked ass was going on that bus.  The only thing I couldn't really clean up very well were his sneakers.  He only had the one pair and I blotted as best I could till the bus arrived.  Off he went smelling like the floor of James Bond convention.

I went to clean up the mess after he was gone certain that at any moment the police and child protective services would be knocking on the door.  I started wondering if I could learn to knit and make a poncho like Martha Steward had on when she was released from prison.  Would this be the day he could finally talk and tell his speech therapist that he really wanted some olives for snack time.  Even though vermouth only has about eighteen percent alcohol, does that mean my floor is now disinfected?

And yet, nothing happened.  Except me going out and buying a new pair of sneakers for the Kiddo and a replacement bottle of vermouth.  Looks like the higher power above decided to give me a free one that day.

Off to go put on my "good" yoga pants as I am sure some pearl clutching troll is now calling in for a welfare check after reading this.  Hey, did you really think we dropped fries only around here? As if! ;-)