Tuesday, May 27, 2014

Autism Tenure

The kiddo turns 10 tomorrow. I'm not gonna lie. It's kind of freaking me out.  Not just in that Mommy sappy, Sunrise, Sunset sort of way either.  Let's add "Christ, how do I have a 10 year old? Damn, I feel old. Let me go to the Wegman's liquor store where I know they will card me because they card everyone and it will make me feel better."  to the mix as well.  Sprinkle on top a hearty helping of "Oh my god, 10 years flew by. I will have an autistic adult on my hands in no time. I have to remember I can't ever die." panic.   Oh I think I will be eating my feelings in birthday cake tomorrow as it socially unacceptable to be drinking before noon.  That's okay though, my feelings taste delicious.  

It's been eight years I have been dealing with our "All the autism, all the time" lifestyle.  Before I went "pro", I clocked in nine more years with working with the special needs population.  So a grand total of seventeen years between the both.  Does that give me some sort of autism tenure by now?  Like a nice plaque that looks like a sticker chart or a gold watch?  No wait, the watch is when you retire and I can't do that.  So strike that.  Perhaps a nice luncheon with my co workers perhaps.  Fries all around!

If you are a newbie reading this, don't loose faith. I can honestly say it gets better but not in the way you might think.  Yeah, there's some progress and that's cool.  I'm not going to complain about that.  A lot of blood, sweat and tears went into it. Literally.  The way it gets better is you just get used to it.   No really.  You do. I can't promise it gets better but you just get better at dealing with it.   It's not like you can leave. Let's just call it what it is.  It's the autism mafia. (minus the grand larceny and loansharking)  Once you are in, you can never get back out.  

Oh yes, there are many days I am numb to it.  The verbal stims are white noise to me.  The routine is as comforting to me as it is to him.  I have clicked on auto pilot many a morning because really what other choice do I have?  I have figured out more of what works and more importantly, what doesn't.  There will be a moment where you will be like that guy in "The Gambler" song and you'll know when to hold 'em and know when to fold 'em.  Seriously, I got that autism tenure now. Trust me, I know.  Some days I'm completely over the culture shock.  So much so that one could say I've gone native. 

What I don't know is what lies ahead and that scares the ever living crap out of me.  Now there is a part of me that's all "He will get a job."  Even if I have to buy a carpet cleaning business so that boy can work his vacuuming obsession into some meaningful employment.  I already have a plan to advertise strictly on autism parent forums.  I know the autism mafia is going to keep it in the family and you know them floors have seen some things scarier than a chalk outline!  Still, I can't be sure and I just won't know till it gets here some day.  Maybe in another couple of birthdays, I'll have a better idea.  As long as he doesn't grow up to be an actual mafia hit man, I think we will be okay.

So I just put my "baby" to bed and I'm sitting here, in the dark typing this.  Making a list of things I have to do tomorrow. Drop off the special snack at school, pick up his prescription renewals from the doctors, get a cake, and bring him to music therapy.  Despite it being his birthday, the schedule remains intact.  Tenure or not, there's no slacking off with this job of mine.

Tuesday, May 20, 2014

You know what sucks?

I love my son but there are moments where I really resent the Hell out of our situation.  Autism, you really know how to wear a mom out.

Monday morning.  We had just returned the day before from a quick get a way in the woods. (You know, that place without Wifi)  It had been a pretty successful couple of days.  Even pushed our kiddo outside his routine comfort zone a few times and he really thrived.  So I guess you could say I was feeling cocky.

I find the permission slip in his book bag.  I remember seeing it briefly before we left but I was in vacation mood and was like "Screw it. Monday Mama can deal with this.  Vacation Mama in da house!" It was for an after school pizza party.  A fundraiser for a student in his class who has been out for some time dealing with a health crisis.  My kiddo loves pizza.  He likes his classmates.  Despite having autism, he enjoys looking forward to a party.  So I'm all "Hey dude, look at this thing going on for Thursday.  Doesn't it sounds like a hoot and a half?  Maybe like a hoot and three quarters?"

WRONG!! I could not of been more wrong.  It was like I was new here or something.  I might as well as suggested would you like to have all your nails trimmed. (You're probably thinking "Doesn't she mean nails pulled out?"  If you are, you probably haven't tried to give an autistic kid a mani/pedi. Get back to me on that sport after you're done drinking.)

Anywho, back to the monster meltdown over daring to suggest he may enjoy eating pizza with his friends for a good cause.  Anxiety is really a heartless bitch.  There really is no other way to say it.  His panic over it was epic.  Parties can't happen at school. (Which is kind of bullshit because it's grammar school.  They have parties for ALL THE THINGS!)  He can't stay after school because he will miss the bus.  Mind you I had just picked him up early from school the Friday before so we could get on the road.  (Remember, Vacation Mama was all "Let's play hooky!")  There was no explaining it.  No social story that was going to talk him down. The kiddo hath spoken.

My husband was like "Babe, forget it.  This is NOT a thing to push for." and I knew he was right.  In the grand scheme, an after school pizza party.  It wasn't worth it.  We can't even mention it in the house without tears.  So many tears.  I am not medicated enough to deal with his anxiety over this.

You know what sucks though?  Thursday morning, I can betcha my son will be quick to rattle off that he's going to it.   Even though I have RSVPed no. Then I get to deal with a meltdown over the fact that I was trying to prevent a meltdown.  It's a meltdown within a meltdown. It's like meltdown inception.  I cannot win.  Here it is Tuesday and I'm already mentally preparing myself for Thursday.  Tuesday Mama is going to the wine shop later.  She knows Thursday Night Mama is going to need a big bottle of Pinot Nior.

I just got back now from his little recorder concert.  As some parents may know, the recorder is an instrument invented by Satan that all third grade music teachers like to spring onto parents.   Up till now, my kiddo has always enjoyed performing any kind of music.  He's really rocked it before.  Today, well it looks like anxiety crashed the party again.  He cried and scripted the entire time and because of it, so did I. (Well the crying.  Scripting lines from various Real Housewives series really wouldn't of worked here.) I couldn't get to him without making a fuss.  His teacher pulled him out for a bit but that made it even worse.  Damned if we do, damned if we don't.  I barely held it together walking out of the school.  My husband said bravely "On to the next thing."  He's right again.  Really, all we can do is move forward. 

I can't help it.  Sometimes this really just sucks.  I hate that I can't stop his anxiety.  I hate that it seems to consume him.  I hate that sometimes, despite all my best efforts, I still can't help him feel safe and secure.  I resent the way I feel because I know there will be so many times where his autism will absolutely amaze me.   Right now though, I'm just having a very hard week celebrating his neurodiversity. 

Tuesday, May 13, 2014

I want a do over.

I've been sitting on this post for over a year now, too afraid to click publish.  Then I thought, "Oh what the Hell?"  I took the time to write it and I hate it collecting cyber dust bunnies. So here goes nothing.

I want a do over.  I don't want another kid.  I just want to get a time machine and have an honest to goodness do over with the one I got.  This is one of those hard truths of autism parenting that I wrestle with a lot silently because 1)Never gonna happen so why dwell on it? 2) It kind of insults the progress he has made and what he is all about.

I want to go back to the babyhood time.  I want to be blissfully unaware of the road ahead of us.  I want to just go around thinking that eventually the sleep deprivation will end.  I want to believe that he'll potty train soon and I'll be done changing wet sheets in the morning before I have even had my morning coffee. (Followed by mid morning coffee, lunch time coffee and coffee all the other parts of the day to keep my eye lids up and open.)

I want my kid to be on the same level playing field as other little kids his age.  Sometimes I forget that kids his age do all sorts of stuff that he can't or simply won't do.  I mean that's good and bad.  Good, when he still calls me "Mommy" and wants to hold my hand in public.  Bad, when I see a bunch of kids all doing some sort of game that kids his age do and he's still pretty content with the same Thomas the Tank Engine trains they probably abandoned years ago. I want to not sit there thinking "Oh those kids must be really advanced." because I have no earthly clue what a kid his age is suppose to be doing at this age. 

I don't want to have to know about the alphabet soup list of letter combos for all of this. ASD,ADD,SPD,IEP etc.  I just want to buy him Alphabits cereal and have him actually repeat the sounds I would say to him when he would sit in the high chair as a tot.  Not just stare at me and chuck them at the dog.  (OK, he probably still would of thrown them at the dog.  Damn, that dog kept the floor around that high chair clean.)  I don't want him to start saying some words and lose them like he did.

I don't want the functioning labels because really, they make absolutely no sense.  Not in our case anyway.  They are way to subjective.  Yeah, my kiddo can hear the musical notes played on a guitar and walk over to the piano and play the same ones there but he can't tie his shoes.  So where do I put him?   People tend to freak the Hell out over the idea of labels but at the same time we do need some descriptive words here.  I don't have an idea of what to do instead.  I guess they are here to stay.  Maybe someone will come along and design a new look for the label. ("Same Great Autism taste.  Now with less stimming!)

I would love to not look like a helicopter parent.  I want to not go on a recon of places before we have been to them to map out possible safety issues.  I'd like to just show up.  How novel.  Did you know some parents actually get to just drop their kids off to birthday parties and sports practices and THEN go back later for them?  I KNOW!  Wild right? I would love to just chill at a beach but my kiddo is making a bee line for the ocean. Never gonna happen.  Some folks actually bring books with them to read.  Fascinating.

I can want my do over.  I can have these feelings and be sorry for having them at the same time.  They can just coexist in my mind.  Sorry but they do.  I can want me to go back and have those moments of pure ignorant bliss combined with the knowledge it is coming.  That maybe I will catch it sooner.  Then maybe I can make my peace with it a little faster.  I wouldn't mind a day filled with some easier judgement to handle.  Like who cares that I didn't feed him homemade organic baby food.  He's ate. He's fine. New Mommy smugness seems like a walk in the effing park compared to what is being thrown at me now.  At the end of the day, the other babies didn't care what I did even when the parents did.  Right now, someone with autism could be reading this and be hurt or even angered at my words.  I'm sorry if I caused you pain with these words but my feelings are valid.  I am allowed to feel my pain just as much as you.

I can't help myself for wanting a do over.  Maybe I'd just savor those first few moments a little more.    Maybe I would be a little more of a relaxed parent instead of obsessing on brands of diapers and other dumb stuff.  Maybe I'd hug him a little tighter.  Maybe I'd sing him one more verse of "Ba Ba Black Sheep" while he slept in my arms.

Maybe I'd buy stock in Ore Ida fries had I known how important they would become to us. :-)

Wednesday, May 7, 2014

God Save the Queen

When life is overwhelming, I often look to folks I admire for wisdom.  Yes, some of these folks are other parents and autism bloggers I love.  My greatest go to source has always been more royal.  I'm not talking about that old British lady with a crown that's on the pound note in England either.  I'm talking about real queens.  Drag queens.  You see a guy in a dress and a wig.  I see a woman that took what life handed to her and recreated herself while wearing fabulous shoes.  Seriously, my dream advocate at an IEP meeting would be RuPaul.

"Two tears in a bucket and fuck it" The Lady Chablis

Damnit if that is not the best mofo advice you will ever need as you wade these parenting waters.  How much time are you going to waste on the could ofs, would ofs and should ofs?  What will all this crying actually do? Not much except puff up your eyes and leave your nose all red. Not cute!  If I want my kiddo to succeed in life, I have to help make it happen.  I have a vision of a look, I got to take the materials in hand an put it together.  I got to show him how to do the same.

"I'll read ya to filth" Jujubee 

Hey I don't go looking for fights but if you come looking for one honey I will be removing my earrings and let me tell you about yourself.  Want to throw some pretentious judgement my way?  You have not seen the side eye shade I can throw.  It's really easy to hide behind a computer screen and make grand claims that you do it better.  I'm betting though most of the smack talk wouldn't happen face to face.  Take my advice, what you see online isn't always as it appears to be.  Look to the source.  If you don't even know the person, does it matter?  Do you know them? Ask yourself do you need them? If they aren't bringing anything to the table other than a loud mouth full of hate, put your purse on that chair and say you are saving it that seat.  In the words of my favorite queen Bianca Del Rio, "Bye Queen,  I'll help you pack."

"And let them eat it." Latrice Royale

Here I am.  Here's my kiddo.  This is it.  Lump it or like it.  He works very hard.  I want him to always feel proud of what he can accomplish.  He is fierce.  He is fabulous.  He did so much when more than one at the start said he wouldn't.  To the one EI therapist who told me he may never express himself or learn in a classroom, BITE ME!

"If you can't love yourself how in the Hell are you gonna love somebody else? Can I get an Amen up in here?" RuPaul

Really, that speaks for itself.  He looks to me.  He will pick up on the emotions I am giving out there. How the heck can I teach him confidence if I don't show it?  I want him to love himself.  Modeling is key.  I want him to be okay with who he is and comfortable in his skin. He will always deal with anxiety.  I know that is part of him but I don't want it to consume him.  I know my anxiety will only feed his.  I have to remain calm so he can see it will be okay. 

"Unless they paying your bills, pay them bitches no mind." RuPaul

Oh you have issue that I take my kid to feeding therapy? Are you paying for it?  Didn't think so.  I shouldn't give my kiddo medication. This concerns you how?  You don't like the fact that he is NOT on a GFCF diet.  How is that your problem? You don't like the fact that I use humor in my blog and page in order to deal with the daily stress that is this life? Point your mouse and click on  This is us.  This is what we do. 

Now pardon me as I sashay way over to this plate of fries. :-)