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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 is 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. 

Tuesday, March 25, 2014

It's Complicated.

"When did you first suspect he had autism?"

I get asked this a lot.  I don't have an exact answer other than "It's complicated." 

I think back to those completely sleep deprived days of new motherhood (Which is  different than the sleep deprivation I have now.  Back then I thought it eventually he would sleep through the night.  The good old days) I cannot for the life of me really pinpoint a moment of "What if he has autism?" I just have these memories now that resurface and it's a moment of flappy clarity.  It's still so confusing.

His toddler playgroup.  This is where it should of slapped me upside the head with some serious red flags right?  Nope.  Kiddo was a little older than most of the tots in there.  He was already running NOT walking by 8 months and into ALL THE THINGS!!!  One of the other moms used to joke how he was in "The Accelerated Program" while her kid just chilled like Buddha on her lap. The Kiddo was fiercely independent from the get go.  He just looked at those kids just sitting still and was like "I'm out!". ZOOM! Off he would go and off I would run after him through the kind hostess' house that week.  One that would not have been baby proofed to the level we were at yet. The other moms would get a chance to catch up on adult conversation and I would pray to God that he wouldn't break something that week. 

Of course eventually all these kids that didn't walk as quickly as he did started toddling.  The playing field leveled out a bit and I could go to houses knowing gates were up,  Breakables were put out of reach.  It got a little easier but then dammit wouldn't you know it those kids started talking.  All the sudden words like "Duck" and "Mama!" were yelled out all the time.  Kiddo started doing that too.  A little later and not as much but he did them.  Plus all the nice mommies in the group all echoed that wonderful catch phrase "Early walker, late talker!"  See?  Not a thing to worry about.  It's totally cool.  Don't mind me as I clean up the two hundred diaper wipes my son managed to pull out of the box and scattered around your kid's room while your kids actually want to play together, side by side.  Keep talking!  I'm listening! Oh you're pregnant again? Great!!! (In my head I am screaming "Are they crazy??? They want MORE of this???")

I think back to that last Christmas before we started down the autism road.  My husband had set up the tree in our family room while I had the kiddo upstairs doing the dinner, bubble bath and fresh pajamas thing.  He turned off all the lights except the tree and told me to bring Kiddo down the steps.  I held his hand on the steps as we climbed down one by one.  I counted each step out loud to encourage him and he echoed some kind of a hum talk pattern back to me.  I remember him in his pale blue fleece footie pajamas toddling up the tree.  His eyes were wide and a big smile on his face.  He was so happy and decided he needed to add to our tree.  Thus started a holiday season of whatever was missing in the house, go look on the tree.  TV remote? On the tree.  Where did my bookmark go? On the tree.  Dimmer switch to lights downstairs?  Yep, you guessed it.  On the tree.  Everyone thought "Oh my gosh!  That's so cute! He's helping decorate it!" Now I think maybe he was just thinking "Oh we put stuff on the tree.  OK, let me go get some stuff for it."  Literal thinking is his way.

So yeah, it's complicated. I have a thousand memories that come back and I think to myself,"Why didn't I know?  Why didn't we start this sooner?"  It just seemed there was always someone around that made me think it was okay and not worry.  I don't blame them.  I don't blame me.  It just what happened.  I can't change the past.  It's just a complicated one.  


Tuesday, March 18, 2014

"Situationly"

You know, it's really funny how many folks that read this blog think I have come to terms with my son's autism diagnosis.  How at peace I am with it.  I have to let you all in on a little secret I've been keeping.  Depending on the day, HELL, depending on the hour, I'm not.

The other day I was having a virtual chin wag with some other autism moms and dads I know.  It would safe to say we all came from very different backgrounds and all of us had very different kids.  So it wasn't surprising that some of us were "Tote McGoats" with ye olde autism and some of us were all "It sucks."  I had a moment where I wasn't even sure what my current feelings were other than "It depends on the situation.  It can "situationly suck".  (Yes, I'm aware that "situationly" isn't a word.  What can I say? I'm a visionary.).  Hear me out before you come at me with your perky pitchforks and torches of why autism is fantastic.  I know it is too. 

My son has two parents who have a different neurological make up.  Two parents who's communication is completely foreign to his own.  He is stuck with two people responsible for his well being that still aren't fluent in his language, "Kiddoense", as I call it.  Every interaction, every exchange, and every conversation can be both stressful and enlightening to both of us.  I would venture to guess he's having just as many "Oh. So that's what they meant!" moments as we do.  Tons of information being processed at all times.  Busy even while at rest.  That's when it can suck a little.

I have missed so many signs of impending illness and or anxiety inducing situations simply because he can't tell me off the bat, "Ma, I don't feel good." or "I'm scared".  That more than sucks, that breaks my heart.  Time and time again I will be cursing myself about how I didn't notice the signs as I'm cleaning up his puke or trying to soothe him when he is upset.  He can tell me the number of a hotel room we stayed three years ago on a vacation but can't tell me that his ears are hurting him when he has an infection.  That blows.  As a mom, my instinct is cuddle and wrap my arms around him to comfort him when he is frightened but with his sensory issues being what they are, it is the last thing he needs or wants.  I won't lie.  That is so freaking hard for me.  I know that's my issue and I have to deal with it.  It's just not the type of mothering I thought I would be doing.  All these years later, still not used to it.  It sucks for him that he still has to remind me what he needs or can handle.   

My son has amazed me with how he views the world.  It's opened doorways I didn't even know were there.  He didn't just knock politely on those doors either.  He slammed them open like that TV character "Kramer" on Seinfeld.  Jarring as that is, it's been awesome. Eye and mind opening. I appreciate his patience with me because sometimes I didn't feel like walking through those doorways.  He dragged me in kicking and screaming.  Once I got there I was grateful but it sucks that some of our interactions can be like that.  I feel like I have failed as his mother that I resisted as much as I did.  That's when it sucks too.

I also forget how it's not just our little immediate family circle that is effected.  Listening to my mom give me parenting advice and sympathy but it's paired with "I wish I knew what to say. I never parented a kid with autism."  I can hear her voice catch.  I tell her it's okay. I don't expect her to know.   That's another "situationly sucky" moment.   She worries about me AND him.  (By the way "Granny Fry", that WAS the perfect thing to say at that moment.  That's exactly what I needed to hear.  So maybe it didn't "situationly suck" after all?)

His autism isn't going anywhere.  I'm okay with that.  It makes him, well, him.  I just hate watching him struggle.  I just don't care for the moments when it "situationly sucks".  I keep trying to help and support him as much as I can.  I just wish the "situationly suck" moments were less, for the both of us. 

Tuesday, March 11, 2014

The weight of his words

Last night the kiddo came out of his appointment with his speech therapist.  As he was wrangling himself into his coat, she shared a cute moment with him.  They have been working on descriptive words as a way to expand his sentence making.  He's starting to slowly get the concept of it but his literal autism mind made quite an appearance.

She wrote out the sentence.  "I will eat ice cream for dessert. The ice cream feels________. " Now to you, you might reply "cold".  The sentence before was about eating soup for lunch and how it was hot.  The kiddo's answer?

"The ice cream feels HAPPY!"

 Now I have to admit, a Dairy Queen ice cream sundae makes me feel happy on many occasions.  Especially when it's nice out and you can eat it outside. I swear ice cream always tastes ten times better when eaten outdoors. Anywho, we had a nice little chuckle about it but it reminded us both just how literal he takes any word spoken and how tough it can be to teach abstract concepts.  Last year in school, they really drove home the concepts of feelings.  I was pretty grateful for it in some ways because I could see it as 1) A good conversation starter "How are you?" or as we say in Jersey "How you doin'?" 2) He could actually tell me when he was upset and I wouldn't have to play the autism guessing game of what's going on with him.  I don't play that game very well.  I often lose. 

Now I realize I have to teach him about feeling feelings and about feeling things.  It's one of those moments where I wonder why they are trying to teach him Spanish in school too.  Really, he's having a hard enough time with English and didn't Dora the Explorer teach him all the Spanish he needs to know using Swiper and the big red chicken? 

I have to laugh when I think about another autism mom tweeting once "Don't take things so literally." and I wanted to tweet back "Does your kid actually live with you?" This is our whole life.  LITERALLY!!  Words have more weight to him than anyone else in my house.  If you have something to say, you better say what you mean and mean what you say.  My kiddo is the master loop hole finder.  Matlock would be reduced to tears by my son.  My husband was recently caught by the kiddo when he was thinking out loud to himself about POSSIBLE weekend plans.  I could of killed him.  It was like he was new here.  You can't discuss possible around the kiddo.  It's set in stone once it passes your lips!

All I know is, if you asked the kiddo if eating French Fries made him feel happy, he'd say yes to that too. :-)

Tuesday, March 4, 2014

The hill you die upon

My older brother has taught me two very smart lessons.  1) Never play kid music in your car.  Your car, your music. Unless you want to listen to Cailou's Greatest Hits for eternity.  (Good advice Big Bro.  That's why my kiddo requests Queen and James Taylor when we drive.) 2) "The hill you die upon."  He was saying it in regards to a person we both knew that had started a Facebook scuffle.  The topic? The "R" word.  On my own personal profile page.  One person just could not wrap his head around the idea that this might be offensive, demeaning and just plain hurtful despite my own and others' request to drop it.   I will never forget talking about it later with my brother and how he just summed it up perfectly. "Like that's the hill he wanted to die upon. Really?"

In case you haven't figured it out by now, autism is one of the hills I will do battle on but spreading the word to end the word is another.  Let's just take a moment and explore the stages of a person who uses this word and is corrected for it.  Most of the time it is a case of they just didn't think or know better.  They usually make amends and we all move on.  There are others who cannot take being told that their speech is offensive and it usually goes something like this;

Yes, free speech protects you. It gives you the right to say it.  It also gives me the right to react to it.  It doesn't protect you from hearing my retort because there's me using my right to free speech.  Isn't that marvelous how that works?  

You are offended that you have been ask to NOT use a word that you used to use when you were on the playground as a ten year old.  Haven't you changed since then?  You used to think New Kids on the Block was the best band ever.  Still do?  Didn't think so. Perhaps it's time to embrace that's using the word "retard" or saying "that's retarded" makes you sound about as outdated as an 8 track player. 

You can't understand why I get so worked up over this word.  I can't understand why you get so worked up over defending your right to it.  Hear what I am about to say.   You're not offended until it effects you.  Then you will be up in arms.  So understand this is my up in arms moment and always will be. This is the hill I am willing to die upon.  I have a son with autism so of course, this is extremely personal to me.  Look around my friend, autism is everywhere.  Closer to you than you might even be aware of and I haven't even touched on those with other disabilities.  If you are kind enough to hold a door for someone, why can't you hold your tongue about a single word?

Oh you want to bust out a dictionary and point out how this word is used in music.  How right on the sheet music of a song you see it, alerting the reader the song is to be played slowly.   Yeah, are we really at this moment talking about that? We're not. You know it.  I know it. You know when you hear someone use that argument of "Oh why can't I say the "N" word cause rappers do".  You're not Jay Z and no I"m not a fan of that word either.  When you defend your right to use the "R" word, that's what you sound like to me.  Just as ridiculous. You will never hear my son refer to another person who has any sort of intellectual disability by this term and mean it in some endearing/bonding way.  Nope. 

Oh it's a medical term!  Yes, a completely outdated and no longer used one.  If you see a doctor that still uses it, I urge you to find new medical care.  Chances are they aren't up on a lot of medical information either.  

Things can be fire retardant.  Why yes, they can be and thank goodness for such a technological advance. I am rather firmly against things catching fire.  I am also  against you pretending this argument is valid when you try to compare fire retardant treated items and the phrase "That's retarded!" as the same.  It's not.  One keeps kid's pajamas from catching fire.  The other is used to liken a human being to an object that no one wants or values.

It's boils down to this.  Be kind.  Compassion is missing far too often in this world.    You may say "I didn't mean your kiddo." but here's the thing.  You referred to some body's kid.  Another human being, who has a family and friends. Likes and dislikes. Strengths and weaknesses.  Something to offer this Earth we all live on. If you have not already, I urge you to take the pledge at http://www.r-word.org/. 

We all have many battles to fight but don't let this be the hill you choose to die upon.  Choose kindness.  Choose empathy. Choose anything but this word.   Choose to have an open mind.