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Tuesday, September 25, 2012

Presenting...Autism!

There comes a time for the big revel.  You've been there with me.  You meet someone new.  You do the general pleasantries of what you do, are you married which of course leads to if you have kids.

Then you mention you do.  For a brief moment you are on an even playing field.  You are a parent talking to another parent.  You should have gobs in common.  Except...

Your son, while he is 8 is not in the same grade as their kid.  In fact he's been in school so long since early intervention preschool days and you kind of panic and forget what grade he SHOULD be in.

He does not ride the big bus home to the bus stop while you wait parked in your mini van with all the other parents.  He is dropped at your door by a small bus. (Not gonna lie.   This is kind of a sweet perk.  My kid's bus stop is my driveway)

His afternoons are not filled with little leagues, being casually dropped off at someone else's house or off to ride alone on his bike. It is get in Mom's car.  Go to speech, OT, PT, music therapy, Social Skills training playgroups etc... (Heck getting him to ride a bike was a big effing deal that required a consult with both an OT and PT)

So eventually the jig is up.  You really can't pretend to be one of the crowd and you mention that your kiddo is on the spectrum.   It's like pulling back the curtain to reveal that The Wizard is just a man.  (who just happens to be on the spectrum of course)

You might get one of several reactions.

"Deer caught in headlights" (She is NOT ONE OF US!)

"Oh my neighbor's boyfriend's daughter nephew is on the spectrum too!"  (Yeah and? You don't have to prove how down on Autism Ave. you are folks.)

"But he's eating wheat.  Don't you know about you can cure him like Jenny McCarthy did?" ( I'm sure she is who you would consult with for all your major medical decisions too right?)

"Oh I see" followed by treating you like one of the gang.  (Of course this is a rare but glorious reaction.   I have to keep myself from kissing people on the mouth when this happens.   Socially inappropriate much? Gee I wonder where the kiddo gets it? )

My frustrations and joys maybe different than yours, I am a parent just the same.  At the end of the day, we all are in it together.  Cut me some slack would ya?  Be nice to me and I might just share a side of fries with you.


Friday, September 21, 2012

Tired

Is there anything more seductive that a warm cozy blanket, pillow and bed.  Sleep, you are one sexy muthatrucker!

Oh yes, I knew tired once.  But then I had the kiddo and he has introduced me to a whole new world of tired.

First there was "newborn tired".  Where you are violently awoken randomly throughout each night for feedings/changing/burpings/i need to be heldings.  I eventually accepted my fate that the bags under my eyes would never go away.   Maybe I could start packing things in them like my keys or lipstick.  Wouldn't that be handy.

Then there was "toddler tired".  Yes he could start doing more things on his own now but this was also coupled with the fact THAT HE COULD DO MORE THINGS NOW ON HIS OWN!!!!  Crap!  Oh and drop a nap now?!  Wtf?  Mother of god I thought I was going to die.

Then came "autism tired" and life has truly never been the same. 

It is a never ending nagging tired of worry, frustration, elation, disappointment, breakthroughs, breakdowns, boredom, laughter and tears.  It is constant.  It is fabulous.  It is never ending.

 It has made me wish some days to be placed into a medically induced coma just so I can catch up on some much missed Zzzzzzz's. 

Monday, September 17, 2012

And then?

If I had a nickel for every time my kiddo said this, the national debt thing?  Yeah I could cover that for ya.  I'd insist on a nice statue of me somewhere.  Like a tacky fountain on the White House lawn would be cool.  Bo the dog could play in it.

Anyway, these two words are the reason Loreal Hair Color gets my money each month to cover the stress induced grays. There was a time the kiddo could not say these words or even had the concept of time and order of events down.  Which led of course to daily chaos that eventually inspired the infamous "Friday Night Mystery Cocktail" time.  Mama is a heck of a bartender. ;-)

Now though, we live our lives, all of us, to these words. If the kiddo had it his way, he would have every minute, every facet of his life planned out till the moment he took his last breath on earth.  I even have visions of him arriving at the pearly gates and being greeted by St. Peter. Welcomed to his entirety only to have him turn around, look at God and say "And then?" Yep almighty power, you better get a schedule up of what the kiddo will be doing for infinity. Or prepare to meet his wrath.

There is no such thing as flying by the seat of our pants.  Just seeing how a weekend will go.  From the moment he wakes till he gets tucked in for the night it's "and then?'.  I'm not gonna lie.   It's a bit of a drag.  It flipping sucks.  Yeah every now and then it's cool cause we do get done what needs to be done.  However in areas like say vacation, it blows!  Remember when Clark Griswold dragged his family through The Louvre in 20 minutes?  That's the kiddo on vacation.  We run through each scheduled activity/event/place simply for him to be able to turn to us and say "and then?"   For he has checked off an item on his list and he must get to the next one.   Meanwhile Mommy and Daddy are wondering if 4pm is to early to go eat dinner "and then" go to bed. 

Luckily for us, answering that we will order another side of fries is often a good answer to "And then?"


Wednesday, September 12, 2012

Food! Not so glorious food!!!

Eating and autism.  Who knew it was "optional"?

How is it one day my kid can't get enough food into him?  The next he will survive on one cracker and glass of milk.  It is maddening.

The sensory is a HUGE component in this.  We're not just talking picky fussy eater.  Oh no!  It's much more Hellish than that.  Textures, smells or even how it looks can be enough for him to be like "OH HELL NO!"   This kid is on a hunger strike for a political cause he has not shared with me.

The irony being this kid LOVES to go out to eat.  If Anthony Bourdain had more of an obsession with French fries than foie gras, these two cold totally hang.  Who am I kidding?  I just want to hang out with Anthony Bourdain. He's one cool mofo.

But again, the eating out.  Does Zagat need a fry reviewer?  Cause the kiddo could totally do it.  For free.  Well for the cost of the fries.  That kid never brings his wallet.  Breakfast, lunch and dinner.  Fries go with anything you silly girl.  Or so I have been told by him.  Yeah breakfast.  And what of it?  You all eat hash browns.  Same thing sunshine!   And don't forget the bread.  There best be some bread on that table.  That 50 shades of brown diet he's on also includes bread, bagels and rolls.

Washed down with chocolate milk.  Want to see him go mental? Offer YooHoo. It's like crack to him. I can't even have it in the house because he looses his mind and goes on a bender.  We once had a habit of getting him one on the way home from speech on pizza night.  He'd have it sucked dry by the time I drove home, gripping the empty container like that creepy hobbit from Lord of the Rings. "My Precious"   Then that sad day when they stopped carrying it?  Yeah we couldn't go there for a while.   I swear they still twitch when they see us come in from time to time.

When we were getting him on meds the doctor probably thought I had lost my mind in his office when he said it "may make him loose his appetite" and I started laughing hysterically.  Cause honey he is living on five Fruit Loops at this point.  Really could it get worse?

So he eats when he eats.  I try my best and offer the best that I can.  Some days he will surprise us.  Others, well, we just order another side of fries.  :-)

Monday, September 10, 2012

I don't remember sending in my resume.

Who here has heard this?

"You're so strong.  That's why God gave him/her to you."

I get this coupled with "and with your background.  You're just so good with him". (worked with the autism population in a school for 7 years. Plus another 2 years in a group home.)

I suppose on paper I look qualified for the job.  I don't remember applying for it.  I don't think anyone in their right mind would.

"But you worked with these kids???"

Yes and then they went home and so did I.  Two separate homes.  And I got nights and weekends off plus paid vacations.

This does not make me the perfect parent.  No parent is.  I'm no saint.  I cuss to much.  I have zippo patience and have been known to say horrible things.

I am no autism angel. I have crap days too. (shit! I cursed again. Dammit! ugh!)

Strong enough? Pffft! Funny enough?  Yeah, I'll give ya that one.

And not just funny looking.  ;-)

Saturday, September 8, 2012

Bowling balls are heavy.

Things we learned this weekend.   Sports injuries can occur in bowling.

Things the kiddo learned this weekend.  When mom and dad keep telling you to use the kid size balls only, LISTEN.

Yep folks a nice adult weight bowling ball landed smack on the kiddo's foot last night while at his weekly game.  And like most kid's on the spectrum, it didn't really slow him down.   Well not for long. Because DAMMIT, he had a game to finish. Sigh...

And while he can choose at times to be most specific on his needs and desires, telling us does your foot/toe really hurt at all?  Not so much a priority when it was very necessary of him to go running into the bowling alley bar twice.  (proof he is so our kid).  Maybe he thought a shot of whiskey would help ease the pain.  But he has no ID and never brings his wallet so that didn't work.

We played it by ear at home.  He went to bed but this morning the toe was swollen and the nail black.  I know!!! Mega Ewwwwwwww!   This is the shit you just can't ever be truly prepared for when you are expecting.  Like you have a rational understanding of baby spit up and poop.  But did any of you really think one day you precious baby would have great stinky sweaty boy feet with a black toe nail about to fall off?  Nope you didn't.   Go get some wine.  I'll wait.

Take a sip.  You feel better now don't you.  For I have warned you.

More things I learned.  Hospital ER Gurneys are awesome.  Beds on wheels!   That's like a spectrum kid's dream.  That's when he finally cried.  When we had to leave his wheel bed.  

I wonder if I bought him one would he actually stay in his own room all night?  Hmmmmm

Thursday, September 6, 2012

I am missing the "Oh how I miss him/her/them" gene.

All over Facebook land for the past two weeks, my fellow mom friends and I have been doing a group countdown to Back to School.

Now two days into it and it's a list of moms saying how much they miss them.

I,however, am not.  Therefore I am evil and I must be destroyed.

Or I could just be an "autism mom" finally recharging her batteries.

I'm suppose to feel horrible here that I don't miss him right?  Maybe I should feel horrible about not feeling horrible?  Nope, don't feel that either.

He is my only child so he is my only experience I can draw from.  It just seems mothering him is ten times harder than the average kid.  The yelling, the crying, the hissy fits etc...  And that's just from me.

Right now I got a dog at my feet sleeping so soundly he's snoring and I actually can write out a shopping list from beginning to end without being stopped 14 times to go look for a toy he's obsessing on.  So go on other moms.  You can go miss my kid for me.  I've earned this.

Wednesday, September 5, 2012

Meds, Schmeds. Pffffft!

I am going to preface this post with the following.   Medication works FOR US.

I've said it before.  You meet one kid with autism, well you've met only one kid with autism. What works for one won't for another.  However for the kiddo, meds do.  And I am forever grateful for it.   That being said, a few of you have asked what's worked. So I share it with you.  Not to tell you to do it. (hey husband is that a good enough legal disclaimer? that's good right?  CYA people.  Cover your ass!)

Anyway when the kiddo was around 4ish years old and the husband and I were about to drop dead on our feet from being worn out, we went to the developmental pediatrician for some ideas.  The kiddo is a mega sensory seeker.  Always looking for movement.  This was making school very difficult as well as any outing or life at home.   He prescribed a very small dose of methylin or what I call the "oh what you do to meeeeee"  (I'll explain why.)

We were instructed to give it to him on a Saturday so we could carefully observe him for possible side effects.  Which would of been MAKING HIM MORE HYPER!!??!!  Mother of god can you even imagine?  I DIE!  So I slipped it in some juice and hoped for the best.   About 30 minutes later my son was laying in bed with his karoke machine singing the Plain White T's "Hey There Delilah" (ooooooh what you do to meeeeeee!!!!!) at the tops of his lungs.  At first I panicked thinking "what have I done??!!"  He's taken to his bed!  Then I realized he was smiling.  He was enjoying the feeling of being still and decided to express it in song.  He was like a breathing Broadway musical.   Later in the day I took him with me to a pet store which was always an over stimulating place for the kiddo. He loves animals.  The outing went AMAZING!  He was content to hold my hand on line looking at Dog Fancy magazines while we waited our turn.   I knew then, we were NEVER not going to use this medication.  He finally was able to stop and see the world.   I wouldn't deny him that.   Not to mention I got a break!

Now things around 5 got a little ugly.  The kiddo was having some major rage and anxiety issues.  Most of which happened at night.   We are talking up at all hours, screaming his head off and objects flying.  This then start creeping into the daylight hours as well.  Just hours of meltdowns.  It was a house of crying.  Him, me, the dog.  He was going to school with bags and circles under his own eyes from lack of sleep.  It was a cycle of chaos that we had to do something about.   Again, a tearful couple of calls to the doctor and with that came Risperidone.  It is an FDA approved drug for treating the symptoms of autism.  It was "the big guns".  He was given the smallest dose again and it would take a few weeks before we saw any change.  We had to be patient.  We had to keep forging ahead.  We had to buy A LOT OF COFFEE!

Now this was also the time the wonders of melatonin came into this house.  So combined with the Risperidone, we got this kiddo sleeping through the night as a start.   Then the Riperidone started slowly working for the anxiety and rage.   If it did anything, it got him to start learning how to cope.

 It's by no means perfect.  He still gets anxious but with meds, therapy and maturity we are able to talk him down before we go into full on meltdown mode more now.  And if he does hop into meltdown mode, they don't seem to last anywhere near as long.

Also around 7 we added a zinc supplement to his diet.  Kids on the spectrum often have wonky zinc/copper levels.  Now I was told it would help with behavior.  Does it?  Well I'm not really sure if it's helping behavior or just helping him build up his immune system.  I have to say in the year he's been on it, he hasn't gotten sick in a long time.  And when he has, it's not that long or serious.  So maybe staying healthy enough to not disturb the routine is what it is doing.  That's good for him and for us.  Not to mention, who wants to see their kid sick?  So on it he stays.


This is what we do.  Will it change?  Probably.  Everyday is the same.  Everyday is different.  We roll with it and order another side of fries.

Monday, September 3, 2012

Wiping the slate clean

My kiddo is a crafty evil genius. Just when I am ready to rip my hair out of my head over something he is doing, he pulls out the big guns. Do you want to know what he does?  Of course you do!

He is a master hugger/snuggler.  The sneaky sonofabitch!

The idea of kids with autism are not affectionate could not be further from the truth with my boy.   He is a love bug.  A hugging machine who can wipe any memory of why I was annoyed at a behavior of his by climbing on the couch at the end of the day next to me and snuggling in.  He's a Svengali with my heart.    Before I know it, I am a puddle of "Awwww" and have forgotten about the 15 times out I gave him that day.

Also, he is like ridiculously good looking.  Seriously.  It's almost unfair to other kids he shares a class picture with.

Plus his other super power?  Acting cute. That bastard!

He'll go sweetly pet the dog while singing a made up song, like "Dogs Are Great". Oh you are not familiar with the lyrics?  They are as followed:

Dogs are great!
Dogs are fun!
Dogs are furry!
I love dogs!

Catchy right?

By the show stopping conclusion of "Dogs are Great" I forgive him for dumping out the entire container of hand soap for kicks.  Or having tried to see if he could in fact pop out the dogs eyes. (the dog and the kiddo have a very codependent relationship).

 And I think for about 30 seconds that life is perfect.

Saturday, September 1, 2012

The WTF!?!?! Moments

My son in his usual way was walking around holding a random piece of plastic toy train track. He occasionally will chew on random stuff.  This was no exception. Lots of prompting on our part to get it out of his mouth.

Would you like to know what he did tonight when I told him "out of mouth please". Of course you do!  It's gonna be good. Seriously you will not be disappointed.




He took it out and then STUCK IT IN MY EAR!!!!!!!!



Did I lie?  Betcha did not see that coming.  Anymore than I did.  WTF kiddo???

I try to understand him.  Try to open my eyes to his world.  See things the way he does.  But I'm sorry. What the Hell was that?!?!

If that wasn't a WTF moment in parenting, I don't know what was.