Wednesday, August 28, 2013

And we're live!

These words still ring in my head from a year ago today when I first wrote about my life with the kiddo for the local radio station.  I was asked to write something about what a day in the world of our autism looked like.  I literally wrote it in about an hour while waiting for the kiddo to finish OT.  I then sent it off to my pal Laurie Cataldo over at 94.3 WJLK in an email and she replied back with this, "And we're live!".  POOF!  Up on the radio stations website and that my fries was the kick in the pants into the world of blogging.  When people ask me why or how I started blogging, I always tell them "By accident."because I never thought it would be more than that.

Oh do you want to read that first post?  It's pretty funny.  Not to brag or nothing but I was proud of it.  Go on!  Read it.  I'll wait. :-)  (

A year later I sit and now I got 15 thousand folks who I call "fries" sitting with me.  Plus, somehow I got renamed "Mama Fry".  I don't know how that happen but I like it.  Nothing really could prep me for both the good and bad of it but like autism, I guess you could say, it's kind of the same.  One day you're just doing your thing, living life, slightly worried about your kid and then some doctor, therapist, loved one, teacher etc says "autism" to you "and we're live" happens to you.  Your perspective shifts forever.  Once you are in it there is no getting out of it.  Much like the mafia.  You may fight it at first but eventually you learn to "leave the gun and take the cannoli".

As you wade through it, you start to see there are turf wars going on in autism.  Parent Advocate vs. Self Advocate.  GFCF diets vs. blogs named after the only food your kiddo might eat. (Actually this is all a farce.  The kiddo hates them but Autism with a side of Kale didn't have the same ring to it) You meet the foot soldiers in the Vaccines/No Vaccines Army and watch the "shots" fly over well, shots! (Ha! I tell ya I'm on fire today.)  And let's not get started on to medicate or not to medicate debate, we'll be here all damn day and I got to take the boy out for new sneakers later.  You think you're down with the rest of your peeps, wearing the right autism blue gang color but then you learn that's not really for all of autism as much as it is for Autism Speaks and a lot of people have big issues with them.  Eventually you might have a moment of thinking "I just want to learn how to get my kid to poop on the toilet! I'm too sleep deprived to read a 40 paragraph blog on whether I should say "child with autism or autistic"!!!!  We're live!! We got to do all the right things now!"

All I can say, chill sport.  It's gonna be okay.  It's not gonna be what you thought it was but it's gonna be alright.  The longer you are "live", the more rehearsed you are, the more you can manage.  Some stuff is going to still screw you up.  You're going to encounter something that reminds you that you are "live" in a performance you didn't get a script for and it will bring you to your knees.  You'll have your pity party and you'll move on. (For example, last night I hid in my laundry room when I thought our AC was broken and had a five minute ugly cry.)  You don't have a choice.  You have no understudy.  You'll learn to improv really well with what life throws at you.  You'll know when to edit things out of your life that simply don't serve their roles anymore. 

Going "live" this time last year was scary and getting that autism diagnosis is too.  Just remember, much like the mafia, other folks taking this journey are loyal as HELL to others doing the same.  They know the script.  I mean of course they do.  There's a good chance their kid has been scripting it all day like my kid.  Even when they live over in a completely different turf, they still got our backs.

A year has come and gone but we're still live and I got to get ready because I promised the kiddo lunch.  Guess what we're eating? :-) 

Saturday, August 24, 2013

Is she really going out with him?

The husband has had this week off from work.  He's done his very best to play court jester and keep the lad entertained at all times.  Honestly it's like the boy is shooting bullets at his feet and yelling "Dance for me!  Dance!"  Daddy Fry really works his ass off harder on a week off from work then when he's at work.  In fact, come Monday, he's going to be leaving this house with a giant relaxed smile on his face knowing he can finally slow down his pace at the office.  I wouldn't even be surprised if on Sunday he goes into the office on the guise of "catching up".  That's okay by me.  I have a date!

Like most gobs of time off or weekends, the kiddo is very concerned about his schedule.  It's not a case of just wanting to know what's coming next.  He NEEDS to know in order to just maintain any sort of level of calm.  I find on weeks when Daddy is off too, the constant worry about the next activity came become even worse.  Daddy being home is just not the norm to him.  No matter what. So we plan out the day from the moment we wake up to the moment he's going to bed.  Sometimes I resent having to do that. I'm not going to lie.  I miss those child free days of my 20's where I was actually kind of bored on a weekend.  Or the ones where I could just chill out with a good book and take several hours at a mall if I felt the need.  (Back when I had extra cash to spend on something really important like the perfect shade of lip stick)  Other times, I see how content and happy it makes him knowing what's coming.  The day feels more organized and things get done that need to be done.  Because the kiddo ain't gonna let ya forget it. 

This morning he kept pacing around the living room worried about August 25th.  I have to admit, I sighed a little when I heard him start repeating the date.  I knew what he meant.  He wanted to play for tomorrow but Geez, it wasn't even lunch time yet.  Plus, I couldn't think of one solid thing that had to be done that he could focus on.  I closed my eyes and took a deep breath and just thought "How can I talk him down from this?"  I saw the pacing getting faster back and forth.  I knew I had to try and come up with something. 

Me: "What about August 25th kiddo?"

Him: "It's a Sunday!" 

Me: "Yes it is.  August 25th is a Sunday.  What would you like to do that day?"  (yeah I'm sick of coming up with ideas.  Let me throw this planning onto him.  What's the worst he could come up with?  Flight to Paris?  Great! I always wanted to go)

Him: "Planes.  Go see Planes"  (At this point I think he's referring to one of the several places we saw actual planes this week.  It's was a museum madness week.)

Me:" Yep Planes.  You like them.  You want to go see some again?"  (not an impossible task.  We do live by a local small airport.)

Him: "No no no no no.  Go SEE Planes!  Get TWO Tickets and a Popcorn! With Kiddo!"

Did my kid just ask me out to the movies?  He totally did didn't he?  My mouth hit the floor.  Usually this back and forth pacing is just me randomly guessing by tossing out nouns until I get the right one of things he decides to do.  He just planned an event.  He just figure out a way to tell me what he it was he wanted to do.   He got inspired by all those freaking planes we saw all week even though I wondered "Is he even enjoying this?" at times.  He is carrying over the theme!

And even though we have already seen this movie, I turned to him and said "Yes. You wanna take me on a date?  You got it."

And he said "Yes! Sunday Mommy and Kiddo go see a Movie. No Daddy.  Just two tickets and popcorn."

So tomorrow, I will sit through Planes again, gladly.  I'm going to have to bring my wallet though.  My date will probably forget to bring his. :-)  

Thursday, August 22, 2013

Opps, my words fell out.

There's song out on the radio (94.3 THE POINT!!! and yes I sang that radio's jingle as I typed it) right now called "Brave" by Sara Bareilles.  I know it's pretty poppy and probably makes me a 12 year old for liking it.  I don't care.  I FREAKING LOVE IT!  Is it possible to have a blogging theme song?  Cause from the first time I heard it that's what I thought it was for me.

"You can be amazing
You can turn a phrase into a weapon or a drug
You can be the outcast
Or be the backlash of somebody’s lack of love
Or you can start speaking up"

Words just make up every single flipping thing.  In this autism house we live in, communication is such a huge part of our lives.  What we meant.  What he understood it as.  What he was able to communicate back to us once the words were out there.  Autism has taught me so much the weight of words.  Trying to explain how I feel to others who I hope either understand what I mean or at least can appreciate what it is I'm trying to say.   There's no font for tone.  I just have to hope I wasn't completely off my rocker when I put it out there.  Let's face it, most of the time it is.  I'm just hoping people just blame that on me being sleep deprived.

"But I wonder what would happen if you
Say what you wanna say
And let the words fall out
Honestly I wanna see you be brave"

I know what happens.  Change.  The more I talk here and on Facebook or Twitter, the more I can organize my thoughts.  I have been able to assess with less panic what it is that needs to be done first.  I'm still overwhelmed but that's what wine and bitching in my blog is for.  It just seems a little more doable.  The more I speak, write or advocate for my kiddo, the natural it seems to be.  It's still hard and there are days where I just sigh and think "Oh Christ I got to explain this blah blah blah to yadda yadda yadda AGAIN?!?!?" but I do it because if I don't "let the words fall out", nothing will change.  Nada.  We'll stay stuck and that doesn't help at all.

"And since your history of silence
Won’t do you any good,
Did you think it would?
Let your words be anything but empty
Why don’t you tell them the truth?"

In my own 'history of silence", I was very closed off about what was going on in our autism home.  That was really dumb.  What was I trying to keep silent?  That he had autism because you spend two minutes with the kiddo, you're gonna know.  There's no real surprise there. Who knows? I certainly don't go looking for trouble but dammit, you bring up my kid, IT IS ON!  The longer time served in this autism army, the more I am ready to jump in when I see one of our own being picked on.  Seriously, have you seen how fast autism parents channel their anger into advocacy online?  We have to remember how fast and how furious our wrath is.  If you are going to hear from us, you will not forget what we say when "the words fall out."  Especially when you folks try to challenge the rights our kids should have.  Honestly, it's like you bringing a knife to a gunfight. We will own you.   I try to remember to make my words pack a punch though.  I don't respond to every bait thrown my way.  Some trolls aren't worth the effort to turn on a computer to write back.  If you hear from me, you will remember it.  Even if we never speak again.

Mostly the song reminds me to try.   Even when I am so tired and cry "What the eff was I thinking?".  Nine times out of ten an activity might bomb but I will still think of that one time it worked for him.  I will remember how glorious it felt and the hope that it brought.  Those other times, well I'll just order another side of fries.



Thursday, August 15, 2013

How can I help?

I get asked this a lot now.  As this blog grows, it's always kind of amazing/awesome to see folks following it that DON'T have a child with autism.  Some of them are teachers and therapists.  Some of them are siblings, step parents and extended family like grandparents or cousins. Some of them just thought my dark sense of humor was kind of funny and somehow found their way to the Facebook page or my Twitter. It was probably all my posts about reality TV or wine.  You big lushes.

Whatever way you found yourself here, I am sure glad you are around. You want to know more. How you find it interesting and you are learning so much.  Let's face it. Autism parents are rock stars and you just want to work on your autism street cred and hang out at our lunch table.  You are more than welcome to do so.  Just don't expect my kiddo to share his fries.  Expect he'll probably just reach over and eat yours actually.

All the same, the question I hear the most is "How can I help?"  You all want to be cool and down with us.  You've heard us raging about the jackasses we have had to deal with in our daily lives. You don't want to be the subject to our sleep deprived rage.  (That is most wise.)  You also get by now that it doesn't take much to make us happy.  We celebrate any and all things.  Big or small.  So yes, we will be grateful to any help we get along the way.  Here are a few simple things to make yourself fanfreakingtastic (It is too a word Auto Correct) in my tired eyes.

1) Once I had to half carry out the kiddo out of the mall mid meltdown.  The kindest thing happened. A teenage girl saw us coming to the door.  She swiftly opened it wide for me and held it open till we passed.  I yelled "Thank you!" over the kiddo's screams. Maybe she had a sibling or knew what she saw coming at her.  She certainly knew what to do and cleared a path.  If you see a parent wrestling something that looks like the Tasmanian Devil going full whirl, hold the door.  We only got two hands. That helps immensely.

2) Again, trying to exit a kid's birthday party where the kiddo became massively overwhelmed, the owner of the bouncy house place decided this was a perfect time to ask me EVERY SINGLE QUESTION ABOUT AUTISM. He also wanted me to know how bad he felt about my son's sensory overload which he repeated multiple times as I was trying to pick my son off the floor and dodging his kicks with his snow boots on.  Just typing this gets me all in a tizzy about it again.  Dude, time and a place!!!  Mid meltdown ain't it.  That's great that you want to make a parent feel better and you want them to know you are so compassionate and open minded.  However attempting a Q and A session when the child is in mid crisis is takes a bit of shine off your polish.  

3) Remember when that loved one in your life first told you that their child had autism?  Or was just going through the long process of being diagnosed? I bet you said something like "If there is anything I can do..."  It's been a few years since then.  Want to rock my world?  Say it again.  Say it now that I've been doing this since he was 22 months old and now he's 9.  Offer what you can of course within reason.  I don't expect anyone to send me on a week long cruise while they are watching the kiddo.  (Although, so wouldn't say no friends and family.  Just saying!) Sometimes just calling or texting a person.  Sending a funny email or a post on their "wall" a Hello and how do you do?  It really means so much when you are just going and going and going... (Again, people who know me.  Feel free to insist I go away for a weekend.  Twist my arm.  Really)

4) Include my kid with your kids.  I don't expect them to be BFFs with the lad.  Let's face it. I've already admitted he's a French Fry thief.  That's a serious crime in the grade school years.  But if you are having folks over and you got kids, sit them down and explain a little autism to them.  I bet they already know some stuff about it.  They probably know some kids at school with it.  Keep it age appropriate.  Explain to them a little extra patience goes a long way.  Doctors and therapists are always up our butts to set up some play dates with typical peers and let me tell ya, that's easier said than done.  You want to help my kiddo cause you love him?  Let your kid be his role model.  Or bad influence.  Whatever you got. :-)

5) Don't use the words "autistic" or "retarded" as slurs.  Ever.  I'm not talking just in front of me.  I mean in front of EVERYBODY!  You know what I mean when I say this.  Don't be that douche.  Don't try to argue with me.  I'm telling you like it is.  Don't be that person.   Don't be so far removed from it that you can't see the pain it can cause.   A simple car accident can cause brain damage and a perfectly healthy person can then be in the same exact boat.  So autism, delays, brain damage, special needs, etc... It's closer to you than you think.  Don't be tossing those terms around like you are untouchable.  You are not.

Well that's all I can think of at the moment.  I just want to thank you fries again for being here.  Whatever your reason for being here.  I'd give you a big old sloppy kiss if I could.  How about a side of fries?  I share. :-) 

Monday, August 12, 2013

What a year means

I just realized the other day that my one year anniversary into the wild and wacky world of Autism blogging is coming up at the end of this month.   I ought to write something profound or thought provoking with a touch of whimsy heart warming fuzzy happy thoughts to it.  Or I can do what I usually do and just ramble on while I wait for the wash cycle to get done and I can then throw my family's laundry in the dryer and then forget about it for a couple of hours till it's nice and wrinkled.  Yeah, I'm good at that. Let's just do that instead. 

When it comes down to it, yes, I learned something.  Quite a lot actually.  So in honor of my kiddo and his love of numbers, a list of things a year has taught me. 

1) "What a difference a year makes" is a cliche but it's true.  It's also not. In many ways the kiddo is completely different than the kiddo I had at this time last year.  We conquered some serious food sensory issues but we're still dealing with some serious sleep/anxiety ones.  No two days are the same at French Fry Inc but we don't dare change the routine or fear the wrath of the kiddo.  Then sometimes a monkey wrench gets thrown into the works beyond my control.  I brace myself for the meltdown and it doesn't happen.  Maturity?  Flexibility? Reason?  Or just damn lucky.  I'm going with lucky.  I learned that for sure.  Just don't question it when something works that saves the day.  It just did.  Keep going.

2) I went online to escape all things autism.  I decided rather firmly not to return to my former career of working in a special needs private school that worked mainly with the autism population.  I needed breaks!  I needed space.  What did I wind up doing?  Blogging about it anyway.  Created a Facebook/Twitter community I hold so dear to my heart.  Yes, my friends live in my iPhone.  Sometimes when you push something so far away, well it's gonna boomerang right back into your face. Deal with it.  It walked into your life for a reason.  Stop pushing and go with the flow. 

3) Opinions are like assholes and everyone has one.  Just because you don't agree with my way of doing things doesn't mean I'm wrong.   We can both do things that work for our families, they can be completely different and still be the right choice!  Imagine that!  Nor do you have to reply with long Gospels according to Autism to every single post on a blog/page/tweet you see online.  Save yourself the energy for your kids.  You're no likely going to change that person's mind anymore than they will change yours.  A couple years into this, you pretty much have an idea where you stand. 

4) Sometimes I want to share more.  I would love to refer to my son by name and post a zillion pictures of him.  The world though is a scary place and I won't.  He never asked me "Hey mom, do me a solid and write a blog about me.   Make sure you don't forget my fear of bumblebees, how I have a hard time remembering when to go poop and how I still like to sit down with a good Blues Clues at age 9 now and then."  So despite him being the most handsome creature on this earth, I won't post pictures of him.  Nor will I say his name.  Some things just got to stay with me.  

5) Being a theater nerd in high school prepared me well for autism.  I am constantly having to explain things to large groups of people.  Stage fright?  Ain't nobody got time for that. Singing helps my son speak?  Well then, our house will be a walking musical.  I sing everything.  Social stories are our scripts.  We are well prepared and rehearsed for new situations.  There are no dress rehearsals.  Places people and GO!

6) Nothing could of prepared me for over 14 thousand followers on Facebook.  That's just nuts.   I am forever grateful for it.  You fries have helped me so much in ways you don't even know.  To know I'm not the only one surviving on a steady diet of coffee and snark, it means so much to me.  I was sad and angry for a very long time.  I still have those days.  I won't lie.  Then I'm like, "Well this effing sucks.  So let's drop this crap." and I move on.  I have to laugh.  I have to be twisted.  It's just how I deal.  I'm so very glad I found others just like me.  

7) Folks who think I'm so sort of autism guru.  Dudes, I am so not.  I am just a mom. That's it.  Anybody can blog.  Anybody can have a Facebook page and decorate it with puzzle pieces everywhere.   I'm not doing anything that special.  There are thousands of these pages.  I know this because I"m usually being asked to share them everyday.  :-) Good luck to you who dive into this world.  If you want to do it, go for it.  I offer one bit of advice.  Do it because you love it not just for the "likes".  If that number is the only thing you are worrying about, you are in it for the wrong reason.  Go change it to just a funny meme sharing page and call it a day. 

8) Waking up and seeing an email from someone from another country blows my ever loving mind still.  Apparently, I'm a big deal in AUSTRALIA!  Little old me.  Who knew?  Like how the heck did all of you Down Under folks find me?  Do you call the rest of the planet "Up Over"?  Seriously, I want to know. Aussie, Aussie, Aussie, Oi, Oi, Oi!

9) Autism Bloggers are AWESOME!! I have made some of the coolest pals in the blogging world and still get a little star struck when they comment on my posts.  I'm all "OH MY GOD THEY READ IT!?!?!?!?! THEY LIKED IT?!?!?!?!"  Then when I see them share it?  I really loose my mind. 

10) I ain't done yet.  I'm not sure what the next step will be for me but I know I will take it.  So far, this whole year has been a very organic process. Nothing felt forced.   The posts that got the most attention are all the ones I wrote on the fly.  I'll just have to see where this takes me next.  I hope it will be as fun and scary and exciting and awesome as this has been. 

Sunday, August 4, 2013

Autism, have mercy.

Sunday, a day of rest.  Pardon me while I laugh my ass off at the very thought.   Or I would if I wasn't so tired.  The kiddo's meltdowns were my god damn undoing today.

I sit here utterly spent.  There are just some days I want to close the day firmly like a door, lock it and throw away the key.  I don't want to remember this day.  I don't really have to remember it because I am sure there will be others like it. 

I don't even have the energy to do a play by play of what went wrong so I can learn from it.  I don't want any more teachable moments.  Today I don't care.  I'm flipping sick of having to constantly plan.  I'm sick of having to check every choice I make.  I know autism is a different set of thinking and way of processing information.  Today, I am really tired of having to always be thinking about every situation in two different ways.  Neurotypical and Autistic.  I simply wish we could just be.

I am tired of being so very angry still.  I'm not going to even ponder when or if that ever goes away.  I don't think it ever really will.  I know I am stuck in a moment and it's not a life time thing.  In this moment, I am having a really flipping hard time getting out of this stuck position.  

What are my choices?  Bottle it up and feel worse or discuss it here or with somebody and still feel worse till I get distracted by life and have to bottle it up again?  I don't want to go over what went wrong and how to avoid it in the future because today was just one of those days where I will never fully know what it was that started the bad funk.  In him and then eventually in me.  It could be something as simple as I went down the "wrong road" (in his mind) while out driving before and for whatever reason that set the tone.  He couldn't tell me or I wasn't listening, well listening with my autism ears, which you know is completely different kind of listening.  He saw something amiss and I couldn't see it.  Autism eyes, I must of forgot those too.

I know he's got to be exhausted.  He's stuck with two parents who do not share his neurology.  He is constantly having to explain why he is upset and sometimes he can't even do that. I bet that probably makes him feel even worse.  I'll add that to stuff I am pissed about.  If my kid is upset, I should be able to stop it.  I should be able to see immediately what it is that is bothering him and fix it . I would like to be able to reason and explain to him why something can't go his way.  I"m not asking for the world to always bend to him.  He's got to compromise too.  Today, it just seemed impossible for both of us.  

Autism, have mercy.  Today I have had enough.  I can't be jolly all the time.  I don't always feel like embracing the quirks.  Sometimes I just want to go from point A to point B without having to pick up and carry my 9 year old son in public in front of a crowd.  It's too damn hard to do this Sunday.

In all my years of Catholic school, I don't remember the nuns ever mentioning a patron saint of neurodiversity.   I think I will just pray to St. Anthony, the finder of lost things because today I have surely lost my ever loving mind.  Usually I'm just bugging him to help me to find the remote to the DVD player so I suspect he'll like hearing a different tune from for a change.