Wednesday, January 30, 2013

This is the only parenting I know.

I've gotten quite a number of emails from readers and Facebook followers that praise me for being so accepting of my son's autism diagnosis.  Asking me how I came to terms with it. How can I be so flip and positive online?  Always cracking a joke.

Here's the thing. I've just gotten used to it.  He is my only child by choice.  I absolutely know no other way of being a mom. This is the only parenting I know.  I have realized though I pick my battles.  Be it the littlest thing, they wind feeling like winning major award when he is successful.  It may not always feel like things are getting easier.   I think we as a family are just getting better at handling it and dammit, I will take my victory lap when it's been well earned. Which usually is more like a big glass of wine from a bottle with a screw top while I sit in my pajamas watching the Real Housewives of some city does it even matter I'm just checking out their shoes and handbags while they roll their eyes and screech at each other. 

Like here's the latest big thing and I am knocking wood as I type this, he's finally eating. This is a HUGE thing.  It did not just happen overnight.  I did have to do a dance with this kid more complicated than Paso Doble night on "Dancing with the Stars".   We are currently seeing "Magic Speech Therapist" who is trained in feeding and food issues.   So before you ask me how I did it, well that's how.  Ask around.  Google.  I can't praise it enough.   A big part of it was trust and it took till he was 8 till we were worthy of it.  This is my second go around with feeding therapy with this kid.  We tried a few years ago.  He'd do it for the therapist and then not for me.  I backed off.  I let him have that round.  He wasn't ready and I had to accept that.   I love to cook and I had a kid that refused to eat.  Eating that, pardon the pun, was hard but worth it in the end.   It's still a challenge as we try things out and occasionally have to let some things go that he just does not like.  (like my homemade slap your mama it's so good Mac and Cheese)  So he just prefers pasta with red sauce.  Big deal.  I can get veggies into him that way.  I accept it. 

Independence in the bathroom is finally being shown.  From toileting to teeth brushing.  Again you new folks to Club Spectrum are all like "Dude how did you do it?"  I can only say one thing, TIME.  He's 8 and just getting it.  So if your kid is 3, well sorry, you got some years ahead.  I know that sucks but keep trying and tell your partner to stop by the liquor store on their way home from work.   Best advice I can give you is work with your kid's teacher.  How are they doing it at school?  Replicated it at home.  Consistency is your best shot.  Notice I said shot?  Yep, nothing is 100%.  Text your spouse and tell them to spring for the big bottle of wine at the store. 

And from the two steps forward one step back department, it's not always sunshine and roses at French Fry Inc.  Especially when sleep is concern.  Now we just had a nice stretch the kiddo finally PRAISE THE LORD going to sleep in his own bed.  HUGE for us.  HUGE!  I thought we finally had our "Come to Jesus" moment with the kiddo.  He was going to sleep in his own room.  Yeah, guess where he was last night?  Guess who got to sleep with Lighting McQueen and Mater last night?  This gal right here.  I was pissed.  I still am but I will keep trying.  Waking up and being confused to where I am, boy I thought those days were long done. 

You know how I am always going on about I'd rather be laughing that crying?  Well it's because it's true.  I have had more breakdown ugly cries over this kid than I care to count and as good as it is sometimes to do this, it really doesn't do anything for him.   When I'm happy or at least pretending to be, he's happy.  So yeah, I fake it till I make it for his sake.  Anxiety feeds anxiety,  It's hard to remember that in the heat of a battle, but it's important. 

It's also important to order another side of fries. :-)

Wednesday, January 23, 2013

From one Jersey Housewife to another.

Dear Jacqueline Laurita of Jersey Real Housewives fame,

You and I need to talk.  Slap on some velour yoga pants and bring the kids. Yes, especially your youngest with autism.  I got all the autism sensory friendly toys here he could want.  Our kids would have a great time sort of ignoring each other until they both started fighting of who gets to watch toy commercials in Japanese on YouTube on the iPad.  Bring yours with ya.  I got wifi.

Now let me pour ya a big glass of Pinot Grigio. (That's how we housewives roll right?).

First, thank you for coming forward about what's going on with your son.   Yes I totally agree with you.  Autism is NOTHING to be secretive or ashamed about. You are way ahead of me with that.  The time at the start,  fresh off the diagnosis process.  Just being honest about it.  Maybe with your TV fame, you kind of had to be.  Either way, way to own it girl. That's awesome. Cheers! And now your blogging, tweeting, Facebooking, fundraising up a storm.  You want to spread awareness.  With ya there girl.  Clink!

Here's the thing. I'm going to keep it real with ya.  Keep it Jersey.  You got thrust into an influential position now.  There are a lot of  actual real housewives relating to you and your family's story.  When you talked about him regressing.  Not being able to say "I love you" anymore.  Girl, I got you.  I would of hugged you through the screen if I could.  I wanted to have an ugly cry right along side ya.

I got to ask you a favor though when you write, when you tweet, when you speak about this.  Be aware of what you are bringing awareness too. Now I know you just started this journey but you got to remember that it's just that, your journey.  You got to let folks know that.  What's working for your family, isn't always going to work for another.   There's a responsibility now on your shoulders on what you share. I've heard you speak of your son's treatment plan and I hear you spouting off what you have been told it will do.  That's great and all but share with us average joes the details.  How is really helping your kid.  What have you noticed so far?   Save me the sales pitch.  Remember there are great many of us that don't have a Bravo paycheck.  So sometimes we have to make tough choices on what we do for our kids.  We don't always have the resources, time or support to pull off what you do.  I'm not looking at you to be our autism guru.  Just keep in mind that when you speak, folks are listening.

You know what I wish for you? That you weren't a "Housewife".  That after a long ass day, you could eat the cookies you don't tell your family about and watch mind numbing reality TV.  I suspect being on a show has broken the illusion a tad.  Perhaps another channel?  Have you tried Vh1's "Mob Wives"?  That's some good crap right there.

I don't get Bravo checks.  I don't get appearance fees.  Although I do think I should have my own show. I'm hilarious. Can you get me on Watch What's Happening Live?  I love Andy Cohen!   I hope you get a chance to just hang out with other parents like myself in the trenches.  We're pretty awesome if I do say so myself.  So if you ever feel like hiding under the covers, go find some.  We've been there.  We just get it.  We always ready and willing to share our fries and a shoulder to lean on.  Just don't feel like you got to know everything right now.  Some of these answers you seek will only reveal themselves in time.

Another glass of wine?

Mama Fry

Wednesday, January 16, 2013

You know what's flipping cool?

Autism families!  That's who!

This morning I was once again reminded how much I love other parents in the autism trenches.  I'm sipping my umpteenth cup of coffee.  Chillin' like a villain because the boy is off to school and Daddy Fry is at the office.  Dog is taking his first in a series of naps for the day.   The laundry is going.  It's cold and rainy out and I don't have anywhere to be other than Facebook. 

I get lots of requests to post questions to the page.  I try to do it as much as I can because I know that there are so many people, so many experiences, somebody is bound to have the trick that worked.  So I just posted one and I smile how in minutes people just start responding with ideas.  It's like a think tank.  I learn so much from that page everyday.  The one kind of response that always just floors me with it's awesomeness is a poster who immediately replies "PM me" (private message) or "Send me a friend request".  I LOVE THAT!  How completely wonderful that is.  We live in a community where this happens a lot online.  We just extend our hand of friendship through the computer screen.  Never seen a person before.  They could live in another country and we are quick to say "yes I get you.  Let's talk". 

I also love what I call in my head the "virtual high five".  Simply by clicking the "like" button under someone's comment that person can see they are not alone.  That it is something you know as well.  It happened to you.  You get the joy, the stress, the emotion of it all.  A pat on the back to know your hard work is being recognized. 

I love how many people share what's going on in their lives.  Keeping it real and telling it like it is.  Thank you for your honesty.  You have to know your words encourage others. 

Mostly, I love the folks that can laugh despite having all the ups and downs that comes with ASD.  I mean eventually you just have to laugh.  Don't get me wrong, I have days where I go hide and sulk.  Eventually I have to pull myself out of it.  I don't have a choice.  Dinner has to be made.   The Kiddo driven to some sort of therapy.   The gears in the works don't stop.  If I'm going to keep on keeping on, I'm going to do it with a smirk and some sarcasm. 

And of course with a side of fries.

Thursday, January 10, 2013

Autism, why does it always go back to poop?

Now this is the story all about how 
My life got flipped, turned upside down 
And I'd like to take a minute just sit right there 
I'll tell you how I became the prince of a town called Bel-Air 

Sorry, that's not the story you're going to hear here.  I mean I wasn't born anywhere near Philadelphia. Nope. I'm gonna "go there" and tell you the tale of rapid fire emails about my boy's poop.  Now you you know why I write this without names.  Like the kiddo needs this story haunting him later on? 

Sent the kiddo off to school in the morning.  Very run of the mill start of the day.  Up at the butt crack of dawn. Many cups of coffee on my part.  Chasing him around to wear pants.  Packed the lunch, wrote the status report in the notebook to the teacher and sent him on his merry way.  I went on to my merry way to the supermarket. 

While waiting in line for cold cuts at the deli, I started scrolling through my smartphone.  (The entire population of New Jersey was ahead of me in line.  Don't you all have jobs?  What's with all you people being here?).  I see the teacher has written me an email.  Not odd to get one from her mid day.  She likes to send little notes of progress or a cute picture.  I appreciate it greatly as it gives me insight to his daily life I'm not a part of first hand. The subject line catches my eyes though. "Kiddo is crying" 

What????  He is inconsolable. Sobbing on and on.  Did anything happen at home?  Something about James and a cookie.  We don't know anyone named James and no, there was no cookie for breakfast. (Although there has been in the past desperate days of "oh dear god please eat something!!!") I quickly respond back that all was well.  Was his sick?  Did she bring him to the nurse?  Did the bus driver or aide say anything?  Has she played some music?  Maybe he is asking for James Taylor. (Yes the kiddo loves him some folk music). 

She writes back. Nope not sick.  Music is not helping.  She'll have to catch the bus aide later and ask. As I give in my order for half a pound of honey baked ham sliced thin, an epiphany popped into my head.  POOP!  Has he pooped lately?  I don't think he has. I quickly type back "make him go".  Then it was radio silence.  I gather the rest of my shopping.  Constantly checking my phone for updates.  Worried about my boy. Wondering if I'm gonna get a call to get him.  Mumbling to myself about poop as I pack my bags.  The check out woman giving me the "this girl is crazzzzy" look.  I should of just told her it wasn't about me pooping but my kiddo.  Maybe then I would of looked less crazy?  Yeah probably not.  Socially inappropriate much?  This gal right here. 

By the time I get the bags unloaded from my car at home, my phone finally "pings" with a message from the teacher.   He was happily root toot tooting on the toilet.   Calming down.  And I can start to relax.  A bit.  It's progress that he didn't do it in his pants but getting him to go on his own, well, that's still needs work.   I'm glad he's trying but man I kind of marvel/resent/wonder why I have the life where I spend 20 minutes of my day emailing about poop.  I mean, that's just kind of odd isn't it?  To the rest of the folks on the planet.   Parents to kids with autism?  Not so much so.   I bet you have emailed, texted, facebooked, twittered, good old fashioned phone called about poop haven't you?   That's just a day in our world.   When behavior is wonky, ask yourself, did they poop?  Am I right?  You think that way. 

So lesson learned today.  When in doubt, go to the bathroom. :-)

Monday, January 7, 2013

This autism life...

Means having to confirm with my husband if he put a kazoo in the dishwasher to be sanitized or was this just another quirk of the kiddo.

This autism life means that despite the fact my son is eight, my husband and I have far to many conversations about our son's poop.

This autism life means that despite a love of going out to eat, I will always feed the kiddo something before we go.  Anything he eats at the restaurant will be a bonus.  Why yes, please wrap up those leftover fries.  They'll go down a treat for breakfast in the morning.  Hash browns, fries, same difference. 

This autism life means that I will have grown a thicker skin than I ever thought I could.

This autism life means still watching the same DVDs now as he did when he was two.  In fact, some beloved ones will need to be replaced.  Dammit Disney to Hell when they decide to put a flick back in the vault.  Thank God for ebay.

This autism life means we will never have a lazy do nothing day.  Every moment will be planned.  Even on vacation.  

This autism life means I will spend a majority of my life ferrying him around to various doctor and therapy appointments.   Waiting rooms are my life.  That's okay though.   Standing around a soccer field when it's to cold out doesn't look like much fun anyway.  Waiting rooms have cheesy magazines, Wifi, comfortable chairs and other parents in the ASD trenches to chat with.  I think I handle that trade off.

This autism life means I will survive on less sleep than I ever knew a human could.

This autism life means we celebrate and cherish every little moment.  Every little victory.  Every little step in the right direction.

This autism life means we will also be brought to our knees in despair.  We will be heartbroken when we least suspect it.  When we see our child completely ignore another child on the playground.  When we hear some jack ass use the slur "retard" out in public.  When we wonder what the future might hold for our rapidly growing son. 

This autism life means I will just brush myself off and try again tomorrow because I have no other choice.

This autism life will teach me I have thousands of friends that live in a computer and I wish I could share a side of fries with them.