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Thursday, July 23, 2015

You think I'm happy?!?!?!

"You get what you get and you don't get upset.
Be happy that you have anything at all."

I hear the Kiddo playing this song from one of his ten thousand children's music Cd's that he prefers to keep scattered all over his room.  (Why keep them in their protective cases when you can scratch them up?)

I can make a thousand jokes in this blog and social media. I can proclaim that it's more fun to laugh than to cry.  I can sit here and tell you that the world moves on despite hearing your child has autism.  It doesn't mean that I have to be happy all the time with this life.

Because if I was, that would be bat shit crazy.

And if I was, you would probably want to know what type of medication was I on and what dose.

Or if I was in drunk.

Or possibly visiting my relatives in Colorado.

It is extremely stressful to live with someone with autism.  It's extra stressful when you start to discover in yourself that you are right there with them with the sensory processing component, anxiety and social confusion.  Sometimes I swear the Kiddo and I are just sitting around my house trying to "out quirk" each other.  He's winning by a landslide most days.  He's the kiddo. I'm the mom. Of course, his needs come first. That's a given.

But what about his "wants'.  You know what I mean?  His tween age hissy fits of stomping around and eye rolling so epic I'm convinced they'll will get stuck in the back of his head.  He's eleven.  He's an only child.  The husband and I refer to him in sentences like the following.

"Did you run it by The Boss?"

"I don't know about this.  You better not let The Boss find out!"

"Did The Boss like it?"

We've made it quite clear who's running French Fry Inc and it's not us.  I don't think it ever has been.  I'd be lying if I said I didn't mind.  I'm flipping tired. I'd like the Boss to give my co worker and I a day off.  Hell, I've been working for the company a long time now. Haven't we accrued some vacation time by now?

Even though you get what you get, I will get upset.  Thinking an autism parent can be perfectly happy and content all the freaking time is effing insane.   You want me to be totally accept it?  Let me have that process of getting there.  Realize I will have my moments where I'll run to it and away from it with equal passion.

I am happy with my Kiddo but am I always happy with our situation? Depends what day you ask me.  Or hour.  Or minute.  That's just where I'm at with this at the moment and I make no apologies for it. This life gets to me.  Don't let the humor fool you.  I have just as many shitty parenting moments as anyone else.  Sometimes, I really relish in the pity parties I throw myself too.

But he's the only thing I got.  So I blow my nose.  Splash water on my face.  Pour myself another cup of coffee and make him another side of fries.




Monday, July 13, 2015

Jumping to conclusions

"I can tell he's very high functioning."

Oh really? Just by seeing my child for all of two minutes jumping at an indoor trampoline park you are able to fully assess his cognitive ability and executive function skill set.  Gee, why was I on that long ass waiting list so my Kiddo could see that child neurologist?  I could have just brought him to Sky Zone and have an employee take a look at him when we were first on our autism journey.  Would my insurance consider that "out of network" I wonder.

And when I start to explain to the employee just how subjective that is and how it's really not cool to just announce to a parent what YOU think where their child is at, I can see he's very confused.

"Well my wife works at the "Such and Such" private special needs school and she told me about these kids with autism and..."

That's great you talked to your wife but here's the thing dude. My husband is a lawyer.  I talk to him about his job and ask questions all the time about legal stuff.  I don't think that has given me enough knowledge to pass the Bar Exam.  (Although I have never been known to pass a bar. HEE HOO!)

Please tell me, what is it suppose to look like?  Or not look like?  Would you ever think of going up to anyone else and say "Gee, your kid looks really low functioning."  No, I'm thinking something might just stop you from doing that.  No matter what you thought in your head.  You might have enough of a social filter to NOT make that assumption.

Now take that feeling and run with it.  Go with it my dear.  Your preconceived notion of what autism is suppose to look like and it's functioning levels has got to go.

My Kiddo can read but he can't physically hold a pencil with enough of a grip to write his name.  He can however type like a madman.  He can open up the computer and pull up his ongoing Word document and get cracking.  He can't however tie his shoes.  He can change the ring tones on my phone.  He can't dial a phone and talk on it without being prompted the whole time by an adult.  He can listen to his music therapist play a note on the guitar and then walk over and find that note on the piano.  He still needs help wiping his own ass. Hell, he still needs reminding to do it in the first place.

I guess this really got under my skin today. I'll be the first to admit to it.  But for the love of my sanity, please stop thinking you or anyone else knows what autism and it's functioning levels looks like.  You don't. I don't either.  Yeah, can my "A" dar spot one?  Sure. I tend to be able to find my tribe and you all do the Team Quirky flappy gang sign back.  But functioning level?  Come on! That's just rude.

Oh, your utter shock that I would also want my boy on the one big court that was open to the general masses was ridiculous.  While I appreciate a special court just for Team Quirky, not all the members need or want it.  I know what my boy could handle.  That main court wasn't crowded and HELLO, all this work we have been doing is so he can try to do things like ANY OTHER KID.  We've been coming here to the special needs jump time for a few months now.  Just let him try!  That's all I ask.

Jumping to conclusions. Well, we were at a trampoline park.  Guess it's to be expected. ;-)




Thursday, July 2, 2015

We aren't perfect but we aren't push overs.

We were out of our hotel room for a large part of the day on Monday.  So imagine my surprise right before dinner to find an anonymous note from another hotel guest complaining we were "walking too loudly" in our room over theirs.  It wasn't just a simple polite request. It was vile. The nastiness in this note is both burned in my brain and yet a confused jumble of insults that I can barely recall. 

The husband took it and crumbled it up with a "Screw 'em.  We made noise in the afternoon?  Big deal. It wasn't in the middle of the night and..."  I grabbed the note back. I could not just let this go. Especially when the room above our own was noisy with it's own pattern of little feet.  However, the afternoon? Who cares? 

I had 3 choices.

1) Write an equally nasty note and be a coward like them and stick it under the door then run but I'm 41 not 12.

2) Go right to the room and pound down the door and then their asses. (I may binge watch OITNB but I know I would not do well in prison.)

3) Be mature, go to the hotel management and use this as a chance to educate and advocate. Plus, if these folks were going to be an ongoing issue, I wanted the staff to be aware of it.  

I went with choice 3 and straight to the front desk. I handed over the note. I asked if it was from them (I really didn't think it would be but you never know. Again, covering all my bases.) and I was quickly assured it was not. Then I started talking. I said "My son has autism. He is no angel or perfect. He's also 11. Yes, I am sure someone has heard him now and then being "too loud". Please know my husband and I do our best. We are on him CONSTANTLY. This is our fourth trip here. We keep coming back because this place has been so accepting of him.  They may of had to endure 10 minutes of noise. I endure it 24/7. We deserve to be here just as much as anyone else.  If they would like to talk to me, have them call me. I would love to talk to them. I would love to tell them about the autism that lives with us and also goes on vacation.  

Oh, also remind these folks it's  1) A hotel. Not your house. You're gonna hear noise. 2) A FAMILY resort with about 100 kids running around. Go to a convent if you want silence at 4 o'clock in the afternoon. 

And by then three other desk staff had crowded around listening to me. Passing that note back and forth and just in stunned shock. Then came a slew of apologies from them. I appreciated it but honestly, there was nothing they needed to apologize for. I just wanted to be proactive in case there was more complaints. I told them again to please call me if there's a complaint but remember. I am trying my best. If you saw the Kiddo that first came to this resort five years ago and who he is now, you wouldn't know it's the same kiddo.  I slapped the note down on the desk and walked away.

We had dinner. I ordered a large glass of wine and tried to shake it off.  Up till this moment, we had been having a really good vacation.  It's one thing to be called out for all the ways your kid behaves. It's another thing to be harassed for it.  Seriously, I have never read anything so obnoxious and think about it. I'm a blogger. You know the comments I get sometimes?  Dudes, if I'm offended you know it's bad. 

We did our usually routine of lots of swimming to get that much needed sensory input.  The Kiddo was snuggled in his bed with a movie.  Husband and I were chilling out and there was a knock on the door. A hotel staff member hand delivery an apology note and a box of chocolates. We were very surprised but at the same time grateful.  It was clear the resort was not happy with the other guest's way of handling things but also understood the challenges we face.  

Sadly, the person that made the complaint, not a word from them. In a way I wish there was some way to talk to them.  Maybe you are also wondering why I didn't post of picture of their note. That really wasn't a hard choice to make.  Should I add another "Look how mean people can be to us" anonymous note to be shared around social media?  What would that really do at the end of the day other than make many people who already have a lot on their plate feel even worse.  Plus, I was in no mood for the thousand of perfect comments from perfect parents who have perfect children who are perfectly behaved 100% of the time.  Or even better, the ones that don't even have kids! (Looking at you Kate!  Make sure you leave me a comment about my feral child and how it's all my fault.  Like you usually do.  You know, that one standard insult that you copy and paste on EVERY autism blog you troll. Hey, maybe you were in that room.  We could have had drinks and you could have the chance to tell me to my face what a terrible person I am.  That would have been fantastic! Damn. Miss opportunities.) 

You see, I get angry a lot. I have learned that unless you do something about your situation, nothing gets better.  A way to see some change is to make some.  I'm not saying my Kiddo is perfect in every situation.  Neither is the way I parent.  We can have a conversation about it though.  I want to have a conversation about it.  Two sides just being bitchy and pissed off at each other not speaking, please.  We are all better than that.   Deciding to go the hotel staff and being upfront gave me the chance to see all this awareness work we all do IS working.  

To that person, we could have shared a side of fries.  Or I could have thrown them at you.  One or the other. ;-)  But seriously, if you ever witness behavior you don't understand, ASK.  Talk to us.  Listen.  I want to have the conversation.  

And dude, I'm sorry if my Kiddo's flapping feet ruined your vacation for roughly ten minutes in the middle of the day but your anonymous note was a douche move.  Thanks for giving my family that memory.  It's going to last a lifetime.  


OK, bring on the hate comments! :-) 

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.

OH. MY. GOD.

 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! ;-)