Monday, April 29, 2013

If I say no...

For as much as I want complete inclusion and acceptance for my kiddo, there are just some times I say no to it.   It's complicated.  It doesn't always makes sense.  It's just what we deal with it here.  These are the possible reasons why though.   Print this out and refer to it when you think I'm being difficult, odd or just downright ridiculous to your invite.

If I say no it is because I am tired.  So very tired.  Physically, emotionally and spiritually spent.  No, he doesn't sleep in.  Ever.  Not the way your kids might.  If it's past 6 AM in this house when he wakes, we consider this a victory.  It never happens on a weekend or a day off from school.  Usually on a Monday.  Or it's just a sign that he is sick. Even when he does sleep till the sun rises, there is a damn good chance he was a real piece of work to get to bed the night before.   He probably slept in our bed.  Probably, who am I kidding?  He did.  So neither my husband or myself slept very well with this restless 67 pound kiddo between us.

If I say no it is because I know your gathering won't start on time or I know will run very late.  Either way, it will throw him so far off his cherished schedule that we will suffer the meltdown for hours after.   Or he will meltdown at your gathering. We hate meltdowns, we hate them more with an audience.   One full of people that might mean well but who's stares still hurt.   Or who decide then, mid meltdown, that this is the time they need to tell me that their nephew's girlfriend volunteers at a special needs camp or do we think vaccines are what caused his autism.  I'm not an autism information kiosk.  I really can't get into that kind of conversation when my kiddo is in meltdown mode.  My mind is running on getting the heck out of the situation.  When my kiddo is in meltdown, so are we.

If I say no it's because once I heard your kids remark to each other how my kiddo doesn't talk.  That babies talk more than him.  I know they are just being kids.  They don't fully know autism and all it's issues and why my son doesn't speak like they do.  Or when he does it's scripted lines from a YouTube clip he loves.   I know they won't play with him because they have tried before and when he didn't respond, they thought he was ignoring them.  It just hurts.  I know they are just being honest and just how kids are but it still hurts.

If I say no it's because we have another therapy session to attend and no it's not that easy to just move the time around.   Remember that schedule of his I just mentioned?  Yeah that's one reason.  The other, oh my god, his schedule is more complicated than most adults I know.  I bought the phone I have just because I knew the calendar option would be much easier for me to manage.  Good therapists are worth their weight in goldfish crackers.  I don't ditch them or play hooky unless he is ill.  So yeah, guess we're coming late or not at all to your kid's birthday party.

If I say no it's because that birthday party you invited us to is at a location that is a sensory nightmare for my kiddo.  I know his limits.  I appreciate the thought but I know when we just simply can't.   He's almost 9.  We've done all the greatest hits of birthday parties now.  I know where and where he can't go because he simply cannot not handle the noise, the crowd, and all the sensory issues that come up.

If I say no it's because I simply don't have it in me to deal with heaps of unsolicited advice you give.  Congrats, you read an article about Toni Braxton's son who has autism or you follow that Jersey Housewife on Twitter, who's son has it too. Great, that's great.  If you have no kids on the spectrum though, yeah I'm not gonna sugar coat this.  It's just obnoxious and I am to sleep deprived to be polite.  To just smile and nod and say "oh really" and pretend like I care.  Cause some days, I just don't care.   I don't want to hear about it or talk about it.  I just want to sip my coffee or wine and talk about some gossip or nail polish color or whatnot and get my mind off all things autism.   I'm not a one trick pony.  I got other things I would like to talk about or think about.

So yeah, this is what it is.  I"m not always funny or "on".  This is a tough road I walk but if you are patient with me, I am a good friend.  I may not always be able to talk on the phone without the kiddo yelling in the background. I can however text or email you in the dark while I'm waiting for him to fall asleep.  Just know I'm trying my best.

I won't say no to another side of fries though. :-)

Thursday, April 25, 2013

20 questions heard daily at French Fry Inc.

On any given day the conversations at this house would probably confuse many NT parents. Not us in "Club Spectrum".  Perhaps some of these have passed your lips as well. Please tell me they have.  Really.  Lie to me.  Tell me you have!

1) Is this poop? Smell this.  That's poop right?

2) How wet are the sheets?  A little?  Here's a towel. It's 3:42am. That can keep.

3) Did he eat lunch?  Besides the dog food pellet he snuck out of the dod's bowl?

4) You gave him his meds right?

5) Are the wipes in your car?

6) You brought extra underpants with you in your purse right?

7) What's the menu there? They got fries?  No?  Not here then. 

8) You hid the cookies?  Where? What do you mean you don't remember?

9) You gave him his melatonin right?

10) Is your brother's party gonna be huge?  How many people?  We won't stay long right?

11) Who gave him a shower last? When was it?

12) Did you call the insurance company about it?

13) Where's the iPad?

14) Is he playing with a dog toy?

15) When's the next meeting with the teacher?

16) Did we meet the deductible yet?

17) Does he have underwear on?

18) Does he feel hot?  Is that a fever?  He's to quiet. Is he getting sick?

19) Maybe we can add that to his IEP?  Did you email his caseworker?

20) Do you want another glass of wine?  (Betcha know that answer)

Thursday, April 18, 2013

Undercover Autism

If I could pin point one statement that has been said to me countless times when I mention my kiddo's autism diagnosis it is "He looks so normal."  Wanna see my eyes roll?  Say that to me with that knowing, head nodding, thinking your giving me the world's grandest compliment look about your face.

If you are an ASD parent, you know the WTF of this statement.  "Looks so normal"?  Bitch please!  What am I suppose to say to this?  "Gee thanks so much!  You know, we've been working really hard to get him to that stealth ninja level of autism.  Nice to know its working!  Hey your kid looks really less annoying than the last time I saw him.  How ya pulling that off?"

Listen, I know this statement comes from a place of meaning well but dudes "You're killing me Smalls!"  Here's the thing.  My kiddo doesn't look anything other than seriously good looking.  Sometimes I feel bad that I don't share his picture because he really is just that cute.  (Which is something that has helped saved his bum a thousand times).  I don't see autism or normal.  I just see my kid. Isn't that all you see if you got one of those running around your house?

Maybe you think you should acknowledge somehow that all the therapy work is paying off but you are unsure how to say it.  Here's the thing, I'm not sending him to secret agent spy school with "Q" as his teacher. (Although that would be awesome!  Oh the homework would be great!). I'm doing all this stuff with him to give him a chance at a successful life.  The same thing you are doing when you get on your kid to study, or cart them to practice or rehearsal or whatever floats their boat.  Yeah the work is different.  The end results will be too. However, "normal" is not our goal.  Happy is.  Less anxious is. Content is.  Satisfied is.

Now I'm sure somebody reading this is like "yeah but those autism kids have those stims and they flap and I can spot them because I'm down like that.  I watch Parenthood and the Big Bang Theory".  Yeah they stim but guess what?  You do too!  Go flap your hands.   Right now.  Stop scrolling and flap.  Feels good right?  Might be something you do when you've been working with your hands a while and want a break.   Or your bouncing your leg as you read this.  Chewing on a pen maybe?  Twirling a piece of your hair.  Scratching your neck because the seam on your shirt is poking your skin and driving you nuts.   So yeah, you're right in the boat with those kids.  Yes, they may do it more than you but you are right there with them.  You just didn't have a section of your IEP addressing them.  Hell, you didn't even have an IEP. At the end of the day, it's great that you might be understanding of some of the signs of autism but no one is handing out extra credit for it.  Shall I acknowledge when you kid is whiny?  Sees silly doesn't it?  You don't have to point out my kiddo's autism.   Believe me, I'm very much aware of it. 

You want to say something don't ya.  You just feel you have too!  OK I'll throw you a life line.  Tell that parent simply "He/She is awesome/wonderful/fantastic as always!"  Honestly you would make a lot of parents happy with that simplicity.   Trying to tell me you can't see his neurology? Well, if you keep saying that you better learn to duck.  My purse might become airborne.  I'm just saying.  And it's an autism mom purse, so you know it's gonna be heavy.  Oh wait, you don't know about what I have to carry with me?  Oh honey. That's gonna be a post for another day.  Sit down.  Order another side of fries.  Going through that list of essentials is going to take a while.  ;-)

Thursday, April 11, 2013

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?  

Thursday, April 4, 2013

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. :-) 

Monday, April 1, 2013

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. :-)