Wednesday, April 30, 2014

Pack your bags. We're going on a guilt trip!!

Waiting for the Kiddo to come home.  I'm on the front steps flanked by my dogs on high alert.  I click "shuffle" on my music and sit back to do a double dog belly rub while I gear myself up for the next shift of Kiddo wrangling.  Our pool was opened today and I know I will find myself in a heated debate about going into our unheated pool.  I wonder how fast he will wear me down with his perseveration.  Despite it being a whopping 46 degrees, I know just saying it's too cold for swimming will not appease him.   I sigh and close my eyes a moment while listening to one of my favorite Tori Amos songs, "Crucify".

"Got enough guilt to start my own religion." 

This line made my eyes pop back open.  I've listened to this song since I was 18 but today it might as well been the first time I had ever heard it.  It really slapped me upside the head.  Forget about swimming in the pool in my backyard that may have icebergs in it.  I am constantly treading water in a ocean of guilt.  It's exhausting, trying to stay afloat.  Sometimes those seas are rough too.  Other times, it's not so bad.  I mean, I'm still very much aware of it but it's kind of like chilling on an inner tube on a lazy river with a cold beer in hand.  You make the best of what was given to you and just go with the flow.

You know the part that gets me the most?  The enormous amounts of trust required.  His trust in me and mine in him.  It's a real balancing act.  Just the other night we all went out get a pizza at a popular local place.  His idea actually. Not having done in a while and kind of thrilled by the spontaneous nature of it, we decided to do it.   Of course, the entire population of New Jersey decided to go there too.  Resulting in a crowded waiting room filled with a 8,238 people (give or take)  and a bored hostess that informed me that it would be a good half hour wait.  In autism time, she might as well said ten billion years.  My husband and I looked at each other in complete fear.  Stay and risk a public meltdown for waiting?  Or try to get him to leave now to go somewhere else and still of course endure a public meltdown over plans gone wonky.

I started explaining to the Kiddo how long it would take.  That we had to wait until all the other people went first.  While I could tell he was annoyed to wait, he was damned determined he was getting his mofo pizza.  The husband shrugged his shoulders and handed the kiddo his smart phone to keep him busy.  You know what happened?  He did great!  Yeah, he scripted a lot about getting his pizza but he did just fine.  He even managed to charm a few of the older folks around me as my boy is quite the gigolo with the "Grandma" crowd.  (He likes a cougar!)  Eventually they yelled our name and we happily ordered our food.  A meal that contained no "safety order" of fries by the way.  We all ate the same thing!  How about dem apples?  Or Pizza, in this case.

Ask me if I fully enjoyed this moment of progress?  Nope.  I mean, kind of, sort of did BUT (and there is always a but) all I could do on the ride home is think "Why didn't I just trust him to be able to do it in the first place?"  The guilt seeps in.  Granted, what happened that night was a perfect storm for a mega meltdown.  In the past, it would of gotten ugly and that place would of been put on that list of places we can't show our faces in for quite sometime and when we do, tip well as to get in their good graces again.   Maybe it's a little maturity. Maybe it's some of the communication progress he's made.  Maybe it was pure motivation on his part to get some of their kick ass pizza that he was able to script his way through an overcrowded loud sensory nightmare and just cope cause he know the end result was PIZZA.  I mean it's really good pizza.  Pizza motivates me all the time.

But why didn't I just trust him?  He trusted me when I gave him the information that there would be a wait but eventually we would be seated.  For crying out loud, I didn't have to cook or clean any dinner up and I couldn't even fully enjoy that!  Nope, got to schlep around this guilt everywhere I go like Sophia on the Golden Girls always walking around with her purse.

Maybe all this hanging around my head was the reason why today I relented and said "Fine!" and let him go in our pool after school today.  He tells me he's a penguin all the time anyway.  Let him go in and see if he can be trusted to realize that the water is entirely too cold. He got as deep as his knees and ask me to "Turn the warm time on please!".

Threw my hands up in the air and said "I can't buddy but we can do something else. "

So he turned and got out of the pool.  I guess he trusted me. That and he knew I'd make him a side of fries inside, where it was warm.  :-)

Wednesday, April 23, 2014

Autism Q and A

It's interesting the sort of mail and comments I receive here at French Fry Inc.  Some of it's very complementary.  Some, thought provoking.  Other's, well, makes me wonder why their Mamas didn't teach them any manners.  Honestly though, the trolls who manage to stumble out from underneath the bridge they are living under long enough to steal their neighbor's Wifi long enough to send it really don't bother me.  Heck, getting hate mail means I've arrived as a writer!  Thanks for validation ya knuckleheads!

I thought I would use this post to answer some questions and address some of the more questionable feedback I have gotten. Here goes nothing! Oh and if you hate this post with every fiber of your being so much so that you feel compelled to write me, realize it will be future blog fodder.  Enjoy!

"Why do you pretend to be normal when your kid clearly is not? I mean if you're kid is in special ed, there's nothing normal about that?"

Thank you Captain Obvious for noting my autistic child is indeed in a special education program.   Here's the thing though, this IS our normal.  I'm not even going to use that "Normal is a setting on the dryer" quote here Honey.  Cause all that's going to do is remind me to go fold those sheets I have in my dryer.  You see, there is always a load of sheets to be washed and dried.  That's my normal.  The nice bonus of having to wash them as much as I do is I rarely actually have to fold them to store them.  I'm usually grabbing them right from the dryer to replace the ones that need to be changed.  In fact I'm thinking of turning my linen closet into a small office seeing as my linens are anywhere but in that space.  Back to this whole pretending to be normal.  What else would you like me to be?  Wailing and gnashing my teeth? I won't do that. I'd smudge my lipstick. 

"Why do you sometimes post or tweet things that have nothing to do autism?"  

Simply because I can.  Yes, autism can be all consuming but I occasionally like distract myself from it.  Call it a sensory break for Mama Fry when I tweet Bianca Del Rio and tell her how much I enjoy her Judge Judy impersonation on RuPaul's Drag Race.  If you want the all autism experience, move on by.  I can't give ya what you need.  If you are ever wondering why your relationships with others might be slipping, it could be the "all autism, all the time"conversation topics you choose that could be doing it.  Trust me, I've been guilty of it myself.  Mix it up a bit.  You'll be glad you did.

"Are you autistic?  Sometimes you sound like you are when you talk about schedules and your quirks and stuff.  Why are you hiding it if you are?"

Am I?  Are you?  Does it matter? Well I guess to some it must.  I will be completely honest.  I have no idea.  I will say that I am sure that the quirky apple didn't fall far from the tree.  There are many behaviors that my son does that I completely understand.  Eye contact?  Pfft, who needs it? Mine sucks.  Sensory issues?  Got them in spades baby.  Schedules, you betcha!  Love me some nice orderly schedules.  You should see my phone.  I got lists galore.  I'm just a hair away from a sticker chart.  Also, some of this normal I spoke of early, it just rubs off on a gal.  If you live it, well, you live it.  If some of the things I do make sense to me and my kiddo and not to anyone else, that's all that matters.  If I have a feeling that makes me understand where my kiddo is coming from than that is a gift.  I don't care what you call it.  Someday, maybe I will pursue that more but I'm 40 and my priority is helping out the kiddo I live with.  I can put that on a shelf for a bit.  I can't shelve his needs now. So sorry, the mystery continues.

"You're too sarcastic.  Autism is a serious issue.  You're making jokes of it."

You noticed? Well Hell's Bells, I thought I was doing a great job of hiding my sarcasm. Let me get this straight. I got to hide my kid, my life, whether or not I'm autistic and my sense of humor.  Gee, that's a lot of stuff.  Guess I could put it in the above mentioned often empty linen closet.  I'm not even going to apologize for my humor Sweetie.  That's just me.  I spent way too much time crying over all things autism and I am sure to cry another rive of tears over it.  In the time between, I will laugh.  I will laugh till my sides hurt.  Being miserable makes the day a Hell of a lot longer.  I'm sorry you're not in that place yet and maybe you never will be.  Too bad though, I would of shared a side of fries with you. 

"Does your kid know you're writing about him? I'm tired of seeing parents write about their kids." 

Yep, he does.  Well in so much he knows there's this awesome page on Facebook that makes his Mama pretty happy with a really cool picture of French Fries and a Yoohoo on it.  There are some topics I won't touch. I think I've been pretty good about that.  I really have no advice to you other of if you don't like them, don't read them.  Go scroll on Buzzfeed.  I'm sure you'll find a amusing quiz to find out what character on "Friends" you are that can occupy your time.  I'm guessing you're not a parent.  Maybe if you become one, you will see the appeal.  Or at least understand why it is we like to talk about our kids so much.  I can't help the fact that he's freaking awesome.  Go ask your mom what she thinks about you.  Say thank you when she says the same or she might not give you your allowance this week.  Or worse, the password to your house's Wifi. 

"When I read you, I feel less alone." 

Thank you.  I do too.  Let's spoon.  OK, that got weird.  Yeah, social skills.  Add that to the list.  :-) Yeah, that's why I still write.  I need to feel less alone too.  We all do.  I'll suffer the negative comments for ones like that. 

Seriously, let's cuddle and nap.  I know you're tired. 

Wednesday, April 16, 2014

Scenes from a Newsfeed

If you are reading this it's most likely you brought here because somehow you found me on social media.  Probably Facebook but I am branching out more on Twitter.  (Although between you, me and the lamp post, I mainly use Twitter to cyber stalk reality "stars".  I will not rest until I get a tweet back from Jeff Lewis of Bravo's "Flipping Out" and I now consider "RuPaul's Drag Race" contestant Bianca Del Rio my new BFF as she actually tweets me back!)

As a stay at home mom, social media is my virtual water cooler in a cyber office.  It's been that way since the Kiddo was a baby and quickly learned my neighborhood became a ghost town once everyone jaunted off to work and the buses rumbled off with the kids.   That day would be stretched ahead of me with nothing more than some tummy time with the Kiddo and the latest Baby Einstein DVD.  (Hi! I'm Julie Clark, founder of the Baby Einstein Company.  You think your kid is only going to watch these DVDs for a little while but I know I will be your ASD child's DVD crack for quite some time.  Enjoy the show!)

I embraced social media for the much needed adult conversation that I needed in order to survive that first no longer working outside of the home year.  When autism rolled on in, I grabbed it tight and swore my undying love to it.  Sometimes I need the touch stone it provides.  Even when I want to take said stone and throw it at someone.

I won't complain about the "Vaguebooking" status updates.  My eyes gloss right over those anyway.  You burnt your lunch? Oh well, the office microwave generally stinks to high heaven to begin with, I doubt your offering made it any worse.  You'll live.  Your favorite sports team is playing tonight and you are excited about your bracket or pool or whatnot?  That's nice.  Are you getting mini hot dogs in puff pastry to serve?  Tailgating is important folks.  My cousin just downloaded 93 new pictures of her vacation to the Dead Sea?  Don't mind if I do.  I scroll through all those pictures and then some.  :-)  My girlfriend took a picture of her new sandals?  Honey! Those toes are cute. What's that nail polish color?

As the years go on though, I am still shocked when some stupid little update or picture pops up that kind of slaps me upside the head with a moment "Oh will my kiddo ever do that?"  So my escape from my reality becomes once again my reality.  Facebook won't give us that "dislike" button, so I doubt the special needs social media filter will be invented anytime soon.  I know I shouldn't be all doom and gloom but I am also a realist here.  I don't think there will ever be a shot of him driving his first car.  I'd be happy if he just figured out how to play Mario Kart by himself without needing my help.  I'm not sure prom will happen but I never say never.   He's pretty cute and seems to be a big fan of the ladies at his school.  One of the moms of a student told me her daughter likes him because "He doesn't say much but he's a good listener."  Yeah, that's right.  This Mama is raising that boy to be a good prom date someday.  I'm really hoping someone sees that.  Dammit, I want that prom picture up on my newsfeed with my kiddo in it.  I also want him to want it but I can't really control that can I?

I never thought I would be taking pictures of the things he types in school.  Not a few years ago.  I never had the hope.  So maybe.  He's not writing War and Peace but man he's got some serious stuff floating around that head of his.  I love how he comes home from school and hops on the computer to journal.  Like a little Doogie Howser M.D.  Granted most of the enteries are about DVDs he watched, vacuuming and our dogs but it's a start. It's important to him.  It's things that make him happy.  That makes me happy.  You bet your sweet ass I'm posting those brag worthy pictures.  If I can type a "Yay!  Good for your kid" under your shot of them at T ball, indulge me my kid's love letter to the Easter Bunny.

All I know is my cyber tribe lives in my computer.  In order to chill with my flappy happy clan, I have to balance the happy and sad feelings I feel when I see an update that leaves me momentarily speechless.  A cyber fist bump to you if you are reading this in the middle of a sea of prom pictures or graduation announcements and you're biggest worry this week is just making it through this Spring Break without a trip to the ER or having to replace your tenth copy of "The Polar Express".  Come sit by me at my lunch table.  Make your way through the "typical" crowd.  A side of fries awaits for you.

Wednesday, April 9, 2014

Autistic or with Autism

"Is he autistic or with autism? Seriously, what do you call him?" 

Well mainly I call him by his name, which I'm not sharing here.  You have to trust it's a really good name.  I think he's like the only one of his whole school that has it too and it's not anything weird like "Apple".  Although now that I think of it, perhaps naming him "Potato" would of been more our speed.  My husband calls him "Champ" and when I'm not calling him "Kiddo" I'm calling him "Monkey Butt" because it makes him laugh.  He then calls me "Hey Monkey Butt!" back, picking great times to do it like out at the grocery store or at a therapy waiting room.  What can I say?  We're a little odd in our humor here.

Anywho, I'm guessing you really mean do I say my son with autism or my autistic son.  Honestly, I use both when talking about him.  Back and forth.  All over the place willy nilly.  Why? Simply because I can and I really don't know what his preference is regarding it.  I'm not even sure the Kiddo knows he is autistic or has autism.  We certainly don't hide the word around here and seeing as he is an only child, the autism way is the only way we roll. 

I used to use the whole "person first" language pretty much exclusively.  The great bonus feature of starting this blog is I've gotten to talk to a lot of folks with autism! Imagine that! Time and time again, I see that many of them prefer the term autistic.   Who am I tell them "No you can't call yourself that." It's quite possible my kiddo might be thinking the same way as these other autistic adults.  Or maybe not.  I'm not really sure.  I mean for all I know my kiddo might identify solely with just being a french fry eating fiend.  I know his autism doesn't define him but it sure is a part of him.  He could go a day without eating a french fry(although it would protested loudly, I assure you) but there is never going to be a day where he won't be autistic or with autism or however you want to say it. 

If my kiddo comes home one day and says "Mama, I prefer it THIS WAY!" then that's the way I'm probably going to continue to do it when talking about HIM.  I'm not going to deny him that request. I'm also trying to make an effort as I get to know folks with autism or autistic what it is they prefer.  I know!  That's a lot of extra info to pack in my rapidly aging mind but to me, I think I can do that.  If I can remember that a person prefers their nickname to the name on their birth certificate, this isn't much different than that.  Maybe this is my Irish (or with Irish decent) background into play here.  We are forever naming our kids one name yet call them another. (No seriously.  We do this a lot.  My mom found out her aunt's real name at her aunt's funeral.  Someday I'm hoping my mom might tell me my real one!)

All I know is I'm just trying to honor everyone's request.  Autistic or with Autism.  I'm sure I'm going to muck it up.  I'll piss someone off.  Know that it comes from a good place and correct me with what you prefer if I screw it up.  We'll move on and order another side of fries. 

Wednesday, April 2, 2014

Autism Awareness, yadda, yadda, yadda

How much more aware do I have to be? I was no less aware in March of my son's autism or autism in general.  However, April kicks off Autism Awareness Month so I got to turn up my autism awareness to 11 apparently.  Can I slack off a bit come May?  That would be nice.  Mother's Day and all.

Pardon me for this jaded sounding post.  I mean, really, how can I not put on my Autism Awareness in it's "Rah Rah! Go Team Flappy Quirky" cheerleader face?  Isn't part of the reason I write this blog for awareness?   How rude!

Here's there thing, I am so aware of autism.  I am very much aware of it when my kiddo wakes me up 4 AM to remind me anxiously he would like to vacuum on Saturday. 

I am beyond aware of it when my kiddo starts pacing nervously around the house when I have to inform him of a sudden schedule change because a therapist canceled.

I find myself rolling my eyes with awareness when I get an email from my kiddo's school PTA asking me to make sure my son wears blue on World Autism Day on April 2nd.  Cause you know, he's not really representing how much he supports autism by just being autistic or whatnot. If you asked him what shirt everyone should wear for autism, he'd tell ya Tye dye hippie shirts.  He's got quite a collection.  Keep on truckin'!

My wallet is keenly aware of it when I bring in the mail and I see a stack of bills from credit cards we have used to pay for said above therapy.  Plus, the irony of seeing some fundraising letter from the folks of Autism Speaks mixed in there with them.  I think in the beginning we raised money and sent them some of our hard earned dollars.  Now I toss it in the garbage.  Hey Autism Speaks, I think you got enough from us.  How about some of it back?  How about not asking the very people who kind of need it more than you? How about not designing a new puzzle piece pin to give to celebrities who will wear it only one day and then probably forget about it? Here's your fundraiser for next year.  Don't waste the postage you paid to send this to my house.  I bet other families would probably join me on this.  You'll save so much money!

I'm very aware of it with each passing birthday of his.  I am aware of it when it keeps me up at nights worrying about his future.  I am reminded how much more awareness is needed each time some someone sends me a private message to the companion facebook page to this blog and it's clear their school just doesn't get it at all.  I am made aware of it every time I have to awkwardly explain and apologize  to someone we meet in public why my son tried to take their keys because he had the compulsive need to read the logo for the kind of car they drive on them.

I am aware I just want autism acceptance.  I just want the world to be well past being on a first name basis of autism  I want them to just get it.  To just be like "Oh autistic, okay, what I can to make this work for ya?"  Make it a case of no big thing and yadda, yadda, yadda.

Time to wrap this up.  I'm very much aware I need to get to the supermarket.  My kiddo is very aware that we are running low on french fries.  That's a bigger priority in this house than a blue light bulb.