Stick to the script!

"All the world's a stage" according to Shakespeare.   He must of been talking about my daily life.  Seeing as it is quite a performance I have to give at French Fry Inc. and all things Autism. 

My kiddo loves his scripts.  Lines from movies, TV ads and my personal fave, us.   Whatever he hears anyone he knows say, well you can bet a side of fries it will be coming out of his mouth.  Yeah, ANYTHING you say.  (at least if he's gonna learn how to "F" bomb, he learned it from dear old mom)  Sometimes the lines come out of nowhere and don't seem to fit the situation around us at all.  Sometimes they are said again and again.  Clearly they are fun to say and bring him some sort of comfort and or peace.  Sometimes they are apparently really good inside jokes and if we say them back?  Whoa Nelly!  That boy will bust a gut laughing his little bum off at it.   Sometimes when he appears anxious or cranky, I will start rattling off the "line of the day" at him in a desperate attempt to nip the potential meltdown in the bud.   More often than not, I find myself saying them in an attempt just to exchange and interact with my son.   Just give me something kiddo.  Hey he gives me the best eye contact when I recite the lines from the Carnival Cruise ad. 

When you think about it, we all kind of have set dialogue we use in countless situations where that annoying social chit chat small talk is required.   Heck my own husband who doesn't really follow sports watches the sports segments on the news to stay in the know so he can banter back and forth with co workers and whatnot.  (Whoops Babe!  Spilled your secret.)  Who doesn't love complaining about the weather or elected official to hate du jour?  We all know our lines.  We recite them on auto pilot.

Let me tell you something.  Whoever invented YouTube is an evil genius.   Scripted lines on demand?  Don't mind if I do says my kiddo, or would if it was a line he heard in some Blue's Clues that he still likes to quote.  It's like a drug, that damn app can calm him but at the same time kind of drive me to drink cheap box wine.  Have him wear headphones?  Hahahahaha!  Yeah as if!  Half the joy is him sharing it with me or so he seems to think.  He's got a lot to learn about women.

Then I think about how many times I quote movie or TV show lines with friends or my husband.  Hell, I've watched him have entire conversations with his best friend with quotes from Star Trek the Next Generation.  Sometimes the situation as been summed up perfectly before by someone else.  Lord knows I have quoted a Bravo Real Housewife on many occasion to my friends.  (Hello, sometimes saying "Happy Wife Happy Life" to a pal while smiling sweetly gets the point across that you are about to crack)  Why not just stick to the script?  

I would love your problems as my own.

Social Media, you are a cruel mistress.   You connect me to tons of friends and family I don't see very often and keep me up to date on their doings.  "Checking in" at various events and activities.  I see their photos of their kids.   I keep tabs on all their issues.   I've made good friends with several moms I've met online that I literally chat with every single day at some point.   You know who you are.  We get each other.

But you can probably tell that at some point every day it is a reality check for me for how completely different our life is compared to the average Joe.  It's really hard sometimes to see the bragging photos and updates on all the awesome stuff their kids do that I know will never be my kid.   Of course, I love these people and I am happy they are happy but god damn it is freaking hard bad to feel what they complain about too.   Yes their issues are valid to them but dude can I have their problems for a day?  Or an hour?

Sport teams and all the doings that go with, yeah I can see how keeping that organized can be a right old bitch.  Especially when I see friends update how they are usually freezing their arses off on some sideline while their kid is at practice or a game.   Why are all these events in bad weather?  You parents of the neurotypicals really need to figure out getting them into climate controlled situations.  I'm sure the expense of all the junk they need to play is a pain too.   I mean at least my kid occasionally gets insurance to pay for some of his stuff.   I still look at your updates of complaining about getting new cleats as a first world problem.   Sorry folks.  Price AFO's (ankle foot orthotics).  Cleats are a piece of cake.  You kid no longer is interested in playing?  Yeah I can imagine eating that expense would piss me off too.  However my kid not going to OT isn't an option.

The folks that post all those fantastic pictures of their kids.   I love them and I loathe them because it probably didn't take 138 shots to get one of them looking at the camera and smiling.  Thank god for digital camera and smart phones.   I feel like an annoying paparazzi but I'm just trying to get one good shot.  Just one.   Do you know the panic/dread I have with buying school pictures?   Or making that Christmas card?  It sucks.  I can't relate to a parent complaining that they have "to many" to pick from.  I just can't.  Please let me have that problem.  I'd love it and embrace it and possibly french kiss it to boot.

The updates on the grades and the school projects and the standardized testing.   Man I almost can't even read it some days.  I'm so sorry that your kid didn't get that extra credit question on the test but I'd love just once to have my kid take a test.   Finish a standardized test even.  Yeah my kid can tell you who the 20th president of the United States was (James Garfield, you don't have to feel bad for not knowing. I had to check with him too) but he still can't write his name.  So yeah, I'm sorry you're in homework HELL with spelling tests to study for or math worksheets to check, I just wish I had that problem to complain in solidarity with you.

I know I know.  The grass is always greener but it's just so damn hard to remember that.  I'm sure if the kiddo was "typical" I'd be bitching about something.  Like the kiddo just got invited to a birthday party for a kid we know.  She's neurotypical and frankly as happy as I am he is included, my stomach just goes in knots at the idea of going.  Cause I can't just be like "go play honey" while sit back with the other parents.   I get to hover and direct and keep engaging him with the other kids.   This next one is at a park we haven't been too.  I bet no other parent is going to do a walk thru/ recon like I will this week with him.   Just getting him used to the setting.   They won't have a thousand conversations explaining things like "presents first, than cake".   I see some parents actually drop their kids off at parties and then come back later for them.   That's never gonna be us.   The very concept blows my mind.   I envy that but at the same time I think "well then you're missing a party" and really as stressful as they are, hey, it's still a party.

I hate that I feel like this.  I will allow myself the pity party for one though.   I'm not a robot.  I'm not an autism guru.  There will be days that are great and others that are sucktastic.  It's the path I'm on and I have no map.  Oh Jeez, were you following me?  I haven't a clue where I'm headed.  I'm all for a road trip so feel free to tag along.   I'll even share a side of fries with ya. :-) 

Fix manage accept autism

April 2nd is World Autism Awareness Day, hence why I'm writing this latest post.  I can't help but reflect a bit on Autism Awareness Days past though every April.  You see, the word autism first came into our lives March 22nd 2006.  Just in time for Autism Awareness Month.   I find that every year that goes by, I'm in a completely different place about it.

Those first few years I raged against autism.  I wanted to fix it.  That was my first gut instinct.  This is something where we will do set a plan of attack to battle back autism.  Guess what?  There was really nothing to fight or fix except my own views on it.  I could ignore it.  I could be angry at it.  No matter what, it didn't really solve anything.   I was in no better place other than being extra spent on it.  I still have days where I wonder why can't I understand it better?  Why does it have to be so hard for my kiddo?  It's just that Mama Bear instinct to want to fix everything for your kid so you don't have to see them struggle or suffer.   Took a while for me to see that some of the stuff I was doing to fix autism was only adding struggle to it.

I dance a lot with the idea of managing autism, which if you have a kid, any kid, you know is next to impossible.   You can teach good manners and set good examples but it's really a crap shoot if your kid is going to be "manageable".  They are kids, not employees. So the idea of managing autism? Yeah um, good luck with that one sport.   I am not the boss of autism.  Some days it's more the other way around.  Autism has decided how the tone of each day will be.  From how early it starts till when it allows me to clock out for the night. Even then, autism has me "on call".  Although, that autism boss has made me much more organized.  I will give it that.  No surprises on the schedule and what we say we will do, we do. How I manage my time has completely changed with autism.

I guess you could say I'm finally getting to an acceptance of autism.  I accept that it's here and it's not going anywhere.  I don't see it as anything to try to fix or needs to go away.  This is not to say there are not WTF moments with autism still.  I'd be lying if I said that.   Hell, I'm pretty sure the kiddo still has WTF with me as his parent.   So we have those moments and we shake them off and try again.   We are both thinking in our own ways.  We express ourselves in our own languages and somehow we got to meet in the middle to a point of understanding.  What he wants to express and what I want to share with him.  We get there.  We accept that it will be a constant dance of trying to get to the middle.  As hard as I am working on accepting him and his way, he is doing the same.  He has to accept me for my differences too and most days he does.   It's not perfect but no relationship is, autism or not. 

Good thing we agree on another side of fries though.  Some stuff is universal. :-) 

Still here

I missed a week!  I've been trying to give myself a break about that.   French Fry Inc. has been a hospital ward as of late.  So I should cut myself some slack but I know it's gonna make me feel better to write some stuff down after the past two weeks I have had.

Kiddo got sick, very sick.  Followed by my husband and then me.  All three of us in so much pain and fever.  If that wasn't enough drama, kiddo got better and the two adults in charge of him were both still sick we could barely see straight.   Not good.   Then we got slowly better but then my husband thought "Hey!  You know what would be a hoot?  Getting bilateral pneumonia!"  So he did that too and No honey, not so much a hoot for you or anyone else in here.  My hands are now raw from constant washing and I'm keeping the good people at Lysol in business.  All right already universe!  We have done the plagues times ten here.   Ease up would ya? 

Oh is everyone finally feeling a little bit better?   BOOM!  Easter break from school!  Good, cause you know those four days the kiddo was back for, that really wore him out.   Cut to the scene in two weeks time when they tell me "He seems a bit off of his routine"  Gee ya think?  D'uh.  :-)  Strangely enough his teacher wasn't open to the idea of having him stay at her house for the week.  I don't know why.  I would of sent him with food money. Geez. 

Here I am on Easter Sunday doing laundry I ignored for two weeks.  (we were reaching scary levels of no clean clothes.)  A week of no school ahead of me and a bunch of chores that went out the window during our virus whirlwind.  You know all those dinky little things you do every day in your home to make it run?  Well when you don't even do those, holy crap balls! My house is at that point I contemplate just lighting a match and walking away.  Let's see if I can get the kiddo to think cleaning out the bathroom sink is fun.  Lord knows he gives me enough work around that toilet with his lack of aim.  Here's a rag.  Go to work.  Oh is this boring to you?  Don't worry.  Back to school for you in a week and then I will keep all these chores to myself again. 

Till then I will take it each day.  Just get me to bedtime will be my mantra.

Sick and tired of sick and tired.

Cliche? Yes but I'm much to tired to come up with anything better than that.  ASD parents, you feel me?

The kiddo came down with some sort mystery virus on Saturday and it is still lingering all these days later. Now that I think about it, pretty much every illness he has had can be described as "mystery". Why? Because I never know what's going on with him.  Not really.  Communication issues never become more alarming than when your kiddo can't even tell you "hey I don't feel good".  I usually get a glaringly oblivious sign like him up chucking down my shirt.  When I'm cleaning chunks out my bra, then I figure out something is up.   There is no warning bells at all with my kiddo.  My husband was the one that got the barf baptism last night at 2:30am (YES!) on his arm as kiddo slept across him.  (Yeah he still crawls nightly into our bed.  Please, I will deal with that battle another day)

So there we were, scrambling in the middle of the night to fix the collateral damage that a sick kid can bring.   Sheets to be changed, pajamas, washing various body parts.   Two dogs at our feet the whole time going "What?  We're up now?  Really?  This seems unusual but while you're up, throw us a milk bone would ya?"  Finally settled all parties down and I stare at the ceiling in the dark waiting for my son to get sick again because he will.   I mean all moms know it won't be just the once.   So no point in falling asleep when I can just sit there and worry about when he will do it next.   Except he doesn't.   He sleeps.  I don't.   I'm really sick and tired of the sleep I do not allow myself to take.

I'm no fool.  I know my husband was more than happy to be going to work today.   The kiddo sick day versus tough day at the office?   Yeah, if I could of left, I would of too.   I don't blame him if he enjoyed his day off of sick duty.  He was sick and tired of us. 

We start the pattern of crying, moaning, running, jumping, crashing and sleeping any and everywhere.  I get out PEC pictures.  I take out sick social stories.   We talk and talk and talk about being sick.   I model taking my temperature.  I beg and plead that this kiddo can at least identify the body part bothering him.   He tells me he is happy, he sticks to his making friendly conversation scripts.   I'm really sick and tired of scripted conversations on days like today.

We go to the doctor's because I really don't have a clue what's wrong.  I am hoping maybe he'll see something like an ear infection or whatnot.  Something that has a set treatment and a duration I am familiar with.   Nothing.  Just a run of the mill virus.  Of course I did the song and dance with both the nurse and doctor of explaining "No I have no idea what hurts on him. See if he'll tell you."  I'm really sick and tired of having to explain that every sick visit we go.  Hello, you're in the medical community.  The communication issues and autism, you ought to be on top of by now.   Here, make a note in the chart. "Mother will look like she's about to cut a bitch if I ask why she doesn't know what's bothering her son".

I am sick and tired of playing the "slip him a mickey" shuffle with any medication.  I find the more doses we go through, the more on to me he is.  No he won't take pills.  Chewable or not.  Liquid only if it's mixed with juice.   Even then it must be served in a juice box, ice cold.  He has another medication he takes for anxiety that we must get in.  The levels have to stay constant.   That becomes additional stress.

I am sick and tired of not being to know what is bothering my child.  Days like today really get under my skin.  I'm his mom.  I ought to know and I don't and that just sucks. A thousand and one different ways my son has taught me how to communicate differently but when it comes to illness, we just hit a wall.  He can't tell me and I cannot read his mind.  He does not understand my pleas to rest and be still when he's crawling on the couch to jump on it.   I do not know what he means when he randomly screeches and grabs my hand to press his chin into it. 

All I can do is hope that he will sleep well tonight and tomorrow might be better.   That maybe by the end of the week I can have a nice scripted conversation over a side of fries.   I will never be sick and tired of that. 

IEP recap!

WE SURVIVED!!!!

Actually, in all fairness, this was probably one of those most successful IEP's we have had for the kiddo like EVER!  Either we got lucky or we're just getting better at them.  :-)  I suspect me screaming at the last one probably helped for this one.  So does that mean I'm setting ourselves up for next year to suck?  Aw crap I hadn't thought of that till now.  Nah I can't think like that.  I got to keep my head in the game.  

So a basic recap. For the first time in five years the OT was present!  Not only was this new gal there. She was there ON HER DAY OFF!  Big props.  I appreciated that.  Although I had worn flats and was ready to take off my earrings at a moments notice to rumble.   Didn't need to!  How awesome! She has started typing with him.  She gave me the links and passwords to the online program so we can do it at home too.  Then she said something that almost made me kiss her on the mouth.  "Typing,computers, it's where this world is going anyway.  Let's build on it."  Hot Damn woman!  You get it!  That turns me on! 

Four years after we fought to have a behavior plan put in, we were finally able to take it out due to the best reason. He isn't having the behaviors anymore!  Strangely enough, the whiny meltdowns still happen in this house. So work in progress here but at least in public, he's doing okay.  Got to take one with the other.  (and before you start leaving comments asking if we are doing the same things here as they do in school for them, YES!)  I know some of you just get it.   They are perfect in school and just melt the HELL down once they come home.   I guess he feels more at ease with flipping his lid here?  I'm not sure but seeing as we all kind of put on a public face of politeness, really, what's the difference?  Whatever, it's gotten better.  It will hopefully continue to do so. 

The one sort of bad news is next year he's gonna get a new teacher.  Now he's had this one for two years now and in these past two years he has made huge progress.  We're talking a kid who used to come up with a daily excuse of why he couldn't go to school to one who gets bummed when it's a week long break.  She just gets my kid.   Hey maybe the upside is once he is no longer under her care I can take that gal out for a much deserved round of drinks.  Lord knows she's earned it.   I guess I got to suck it up buttercup but I'd be lying if I said I didn't need a good social story to accept the change.   I am floored by this woman who could see in my kiddo all the awesome I see everyday in him.  There are no words to express how that makes me feel. 

I did get one little dig into them.  Couldn't let them get off Scott free could I?  With the handwriting thing, the goal has been to get him to do print his name.   I pointed out to them "Hey, if he's only going to learn one thing with handwriting, shouldn't it be signing his name in cursive script? And it wouldn't it be easier for him.  Seeing as it's one flowing movement and half his handwriting problem is taking a pencil off and on the page?"  The look on their faces was kind of priceless. Gobsmacked!  Nobody thought of this till then?  Other almost 9 years old are learning this skill.  Why shouldn't he?

 He started cursive today.  Guess who's kicking ass in it?  :-) Which is good because Mama's handwriting is terrible.  Perhaps he can give me a few tips.

"I didn't mean your kid."

Really?  Who's kid did you mean?   When you let the word "retard" or the phrase "that's just retarded" fly out of your mouth.  I shouldn't be upset because you didn't mean my kid.

Listen up.  It's 2013.  Get hip with the lingo. The "R" word is no longer cool.  In my mind, long before I even had the kiddo, it wasn't cool.  Buy a thesaurus.  Find another word.

Stop using this term to equate the neurological make up of my kid to when you don't like something.  Don't use this term when you or someone else makes a mistake.  My kiddo is NOT a mistake.

You are equating an entire population of people to something negative.  You probably know better than to use the "n" word.  Or the "f" word.  So why not this one?  Maybe because you think my son won't understand and call you out.  Guess what?  I understand and I have no problem calling you out on it.  And the whole, "oh they won't catch on" Yeah, I call bullshit on that too.   My son might not catch on at first but upon hearing it again and again and using that same tone, he will start to understand what it means.  He will start to think his very existence is something bad.

I get it that some people don't know or didn't mean it.  I'm 38.  I'm in that generation where we started figuring out that using a medical condition as a put down or a punch line is really not cool.  Some of us even take it one step further and actively call people out on it when they hear it used.  I know there are even some people who just don't use it around me because they know I will tear them a new one but probably let it slip out in other places.  If you can make the effort not to do it around a certain person, you can do it for everyone else too.  Get your act together.  We owe it to our kids.  No matter what their neurology.

March 6th is Spread the word to end the word day.   Take the pledge at r-word.org.   Share this on facebook.   Talk to people about it.   Explain it as this.  Why would you want an entire population of people to feel like they are less than?

If they say they didn't mean your kid, remind them they are talking about some one's kid.  Some one's pride and joy.  Stick up for all kids.  Not just the ones you know.