To “Cure” or not to “Cure” – That is the question

**REPOST** But since Autism Awareness month is coming up…why not?

This is a subject that I’ve debated blogging about for quite a while.  Semantics aside, there is an intensely passionate volley of opinions to do with this issue.

Sometimes, I am pretty sure where I stand on this debate of whether to use the term “cure” autism or not.

Other times, I have no freaking idea.

Here’s what I am sure about.

Everyone is entitled to their own opinion, feelings, thoughts and ideas.  To judge someone based on these things, to me, really makes no sense.

How can one judge when one hasn’t seen, heard or felt the same?  This is what I base my opinions on.

Ronan has had his own unique path through autism spectrum, and we as parents and family have traveled our own, too.

What exactly is this “autism spectrum” anyway?  Is most of it a form of unique personality? Is it a neurological disorder/disability/assault/ damage?????  These are things I ponder on a daily basis.

When I think about “cure”, what comes to mind immediately is, “would this end anxiety,  stress, discomfort in social situations, the difficulty expressing what HE IS FEELING to the point of extreme and utter meltdown, and would he be saved one minute of frustration or sadness?

Would this help with his digestive distress?  His auto-immune sensitivity?  Would this be something that would give him the confidence to relate to others if he really wanted to, but was afraid to because he didn’t exactly seem to know where to find the words?

In opposition, would this be something that would take away his beautiful artistic expression?

Would it eliminate his insane word-decoding ability?  Would he be indifferent to the funny and quirky things that make him laugh for two hours now (and I’m sorry, but I love this about him!)?

Would it take away his beautiful, intricate vision on life, people and music?

Would his IQ drop below genius level?

Would he be another Ronan with less defining characteristics, or the same Ronan with less pain?

I wonder about all of these things.

But what I do know.  What I’m sure of…

I want him to have the choice.

Ro, in a rare moment where he is actually not awake and blissfully unaware of this debate. "Let me sleep, fools!"

Hi, This is Autism.

A long time ago, back when Ro first got his diagnosis, I almost made matching shirts for us both, emblazoned with that bold statement.

Yes, this is me going back to the same old argument about labels, but I have new thoughts almost every day on this subject, so I must shaaaarrrrrrrrrrrrrreeeeeeeeeee with you! lol

Last week, one of my big sisters, The Tray, who just happens to have a 12 year-old daughter who is diagnosed “aspergers” was chatting with a fellow school parent about mundane kid issues.  

The Tray mentioned something about my niece’s aspergers, to which the parent replied, “AUTISM!!!  I didn’t know she had AUTISM???  Why didn’t you ever tell us??!!!!”

The Tray, being The Tray, replied, “Well, I haven’t needed to tell you about her diagnosis thus far…would you like me to tell you her bra size, because that’s pretty much equal information divulging???!!” 

Okay, maybe it didn’t go down like that verbatim, but knowing The Tray, that’s how I imagine it, and I bet it’s pretty close.

Anyaut, this brings me back to my constant contemplation of label etiquette. 

I don’t introduce my son as, “Hi, this is Ronan.  He’s six, and he has AUTISM!!!  AUTISM!!!  AUTISM!!!

Why does Mama need to share that on the first date?  It’s not like you will need a HAZMAT team to come and diffuse him!  I can see my need for divulging diagnoses if you are a therapist that needs to work with him, or if he does something inappropriate socially that may make someone offended. 

But really, do I need to announce this upon meeting new people every time?  Why not say, “This is Ronan, his IQ is over  140 and he can recite all the states and capitals in 40 seconds or less!”  Or why not share, “This is Ro, and he hates helicopters, but he can add and subtract far beyond his years!  Isn’t that special?!”

 It’s a tough road to navigate. 

I was talking to a mother last week who has a child that goes to school with mine, and she just couldn’t get past how he seemed “different” from all of the other kids his age.  She was just so embarrassed by all of his behaviors, and she had such a hard time with his uniqueness. 

Look, I don’t want my kid to misread “social cues”, in fact, he’s taking special courses and incorporating “social education” into his therapy schedule every day, but what I don’t want, what I worry about sacrificing, is his individuality – his strengths, his admirable qualities – his fabulousness…

Does that, should that,  need to be sacrificed with the “autism” label?

To that Mom that worries about her boy being so “different” –  will your child resent you for really wishing he fit into a round peg when he is square all along???

I thought her child was lovely.

I think my child is lovely.

I think my niece is lovely.

Sometimes, even though I know he needs to learn a different way, even though I know it carries pain, I think AUTISM is lovely.

I don’ t love that he has hurt… what Mama does?  But I love my child with AUTISM.  

Label or not. 

That means nothing.

And he means everything.

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The Only Thing We Have To Fear…

is EVERYTHING, bitches, EVERYTHING!!!

What is wrong with all of you?  How can you all walk around so nonchalantly, ridiculously ignoring the danger that lurks everywhere??!!!!! 

Germs!  Everywhere, sinister germs!  Death, at any moment, death could claim you!  Aneurysms, lightning, car, plane, train, bicycle, motorcycle, unicycle, roller-blades (if you are klutzy me), and even bathroom slipping accidents!   All can happen at any time!!

And did you know, that when you are sleeping, ghosts, devils, demons and spirits can haunt you??  Yes!  Even at rest you are in danger!

Strangers can kidnap you, idiots can judge you, you can make mistakes and suffer the consequences and loved ones can get very mad at you for any given reason!!! 

And as if this wasn’t enough to be terrified of, did you know that you can actually be afraid of being afraid????

Yes!!!  I am here to tell you that, indeed, you can!

Oh, Mami, and it is the worst fear of all!

This is the fear that you wind up with when your never-resting Brain 2000 ponders and pokes at the very ends of imagination day in and day out, 24/7!!! 

I like to refer to Ro’s brain as “the super computer”, because I know that he treks the suffering trails that his Mama does…except his Mama is a Mad Hatter, and he is not.  Thankfully.

Anyway, my Brain 2000 never, never rests.  Nothing can stop it.  It goes from “which fruits have cores, and can you name them all??” to “why do they refer to opiates as ‘smack’?? ” –  this happens in a nano-second.  Don’t try to understand it, it just is.  Ro’s Dad used to say, “I can’t understand the way you think!  You go from one thing to the next, and I can’t follow it!”

This is because he is a somewhat “normal” humanoid.  Or as we refer to “those people” in our family -“a straight”. 

Straights can’t grasp it.  We just accept this.  The Brain 2000 is an anomaly.  I don’t want to say “freakish”… okay, it’s freakish, but whatever.

I have made an art out of worrying about worrying.  Sadly, I think I passed this on to Ro. 

At least five times a day he says, “Oh, it’s okay, I won’t worry about worrying!”  This was my tip-off.

With Ro, his Brain 2000 is continuously tormented by seemingly harmless things.  For example, the oven timer counting down  when it’s warming up – this is excruciatingly unbearable. Other things, like whether the car is backed into the parking space or facing forward, can also elicit terror.  And the new one, my favorite – fear of actually uttering the word “helicopter” himself (he got PTSD from one that hovered too close at the Halloween parade last year), even though he loves them and will draw them and enjoys talking about them.  He refers to a helicopter as “that thwacking thing that flies in the sky”. 

Sigh…sometimes, there’s no reasoning with the B 2000.

Sorry, Ro.

As The Snackie says, “When you have smart kids, not much you can do but ride it.”

Y’mama’s right, but hot-damn, it is one wild ride!!

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Mama fat.

At a damn rockin’ party in high school, a boy (a really hot boy – hello hot guy from Pine Run!) put his hands around Mama’s waist.  Completely around Mama’s waist.  His fingers literally spanned the girth of my midsection. 

Everyone took bets on Mama’s waist size, and when they really, literally measured it, my waist was 23″.  

Hmm, was Mama anorexic?  No!  But that was a frequent question that dopes asked me when I was young.  Come on!!  I grew up Italian, with stuffed meatballs and Cavatelli the norm meal on any given Monday. 

And Mama hated (and still hates) puke, so bulimia was out of the question.

What kept Mama thin?  Mama’s Mama and Papi were thankfully blessed with  insanely hyper metabolisms – thus, Mama’s 23″ waist.

Mama ate a Snickers bar and a Sprite for breakfast, a Burger King chicken sandwich and fries (another Sprite) for lunch, and a giant Italian home-cooked meal for dinner.  Then followed Mama’s dessert – a cream-laden concoction of sorts…pineapple upside-down cake, strawberry shortcake, custard, cannoli, ricotta pie, etc. etc.

Mama was never over 120 lbs.  And Mama is 5′ 6″. 

Flash forward to pregnancy number one – Ronan James in belly…Mama ate fruit and tuna and salad and vegetables, screamed and jumped up and down on the floor above our downstairs neighbor, who chain-smoked below us, chastising him about the unknown horrors he was causing my unborn child with his second-hand butt smoke. 

After the birth, Ronan James literally sucked out all of the weight gained, which was only about 20 lbs., through his constant nursing.  Mama was even thinner after birth than before I was pregnant!!

Ro was 30 lbs. at 10 months.  I had carpal tunnel for the longest time, just carrying that sack of tatoes around!!  So, Mama was skiiinnnnnyyyyyyy!

And OMamaGod!, I still remember the tiny black skinny pants I bought at Target that kept falling down due to my once again 23″ waist!  Hmm.  What happened?

A large thing know as “The Loudon” came along -that’s what mofos!

With this supposed “seven pound baby” Mama gained 65, yes I said 65 pounds during my pregnancy. 

And when he came out, in true Loudon fashion, breech and C-section, because why does anyone think he can do things the way everyone else does, ever!  He was an over 9 lb. giant tub of stubborness! 

Oddly, he also looked exactly like Jose, my sister’s Mexican gardener at the time (No, Snackie, I swear to God, I didn’t have relations with Jose!  I didn’t!)  But I digress…

Anyway, it took a little longer, but The Loudon had a penchant for frequent nursing as well, so I was down to my high school weight soon after his birth, too.   Yay, Mama so skinny and lucky and all bitches resented the pound shedding. 

Oh, but there came a time called “weaning”.  Mama had been pregnant, nursing, pregnant, nursing for over 5 years…it was time…and The Loudon could ask for “ditties” with a please and thank you at the end, so it was getting a little much.

Finally, my body was mine, all mine!!!!  No more worrying if Mama had a glass of wine, a little bit of fish or some gassy broccoli!!!  All edible was Mama’s, all Mama’s!!!  Bwaaa haaa haaa!!! 

And eat Mama did!  Meatballs in the morning, Party Cake ice cream in the afternoon and pizza and wine at night!!!  All food, all the time, every day all day, Mama have it, yay yay!!

Only, Mama’s super metabolism was not cooperating anymore.  Pounds started to creep.  And the bitches crept until Mama weighed a buck and a half!

Ohhh, this was not nice for Mama.   But food so good, so tasty, so Mama kept eating, and eating and eating and eating…

And Mama became fat…so fat.  Not attractive fat.  Not curvy and still delicious, just fat.  Sloppy and fat.  Out of shape and fat.  On the verge of cardiac arrest with super high blood pressure and fat.  Fat.

Mama has been fat for two years, two whole years of Mama’s life spent jiggling and sweat-pant wearing and hiding in all black clothing and big shirts.

It was time. 

Mama started with 24 lbs. to lose to get to her realistic goal weight. 

Gone for now is the Party Cake ice cream, the cavatellis and the stuffed meatballs…sigh…why can’t Mama still eat everything and anything all day long and stay skinny???  WHY???!!

After 10 days, Mama has lost 6lbs!  Not bad!

I still want the damn stuffed meatball though.

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I Don’t Live in Darfur

My tic post got some Mamas to thinking, including myself.  What do you all use to keep going?  When you have had the WORST day, kids are miserable, relationships are in the can, financial situations are laughable, parents are…well, parents and everything is just going to pot…what motivates you to keep going?  How do you pick yourself up when you want to bitch slap everyone,  curl up into a ball and then just shut everything out?

My big sister, Snackie, has an unbelievable way of seeing the positive in EVERY situation, so  much so, that I want to bitch slap her sometimes.  She never gets defeated, and she always makes me see that I’m not ruined either – I want to double bitch slap her at first, then I know she’s right, and I love her for it.

My other big sis, The Tray, repeats this phrase every time someone complains about anything…”Did you know that every 2 minutes a woman is raped in America?  And I bet she was wishing she got your flat tire today instead of that stick up her butt!”  …excuse the graphic description, but that’s The Tray, and I love her for that, too…never have to guess with that one.

What I like to do is remember that there are people who live in third world countries that are suffering SO unimaginably – I am really lucky, no matter what is going on in my life, compared to them.  I don’t live in Darfur!!  Have you seen what’s going on there???  There are no parallels with Darfur to our children with challenges, divorces, bankruptcies or seasonal depressions!!  You die there!  First, you suffer immensely, watch your children suffer, have no home and watch your family die.  Then you die. 

So, as The Tray says, “Suck it up!”

Here’s my six year-old son’s wonderful way of looking at the situation when he is upset.  “I can think of my happy things, Mom!” 

Seriously, where is he from?  This is what he typed up, to remind him of what he can think of when he is sad or angry…

 

What makes Ronan happy?

Eating chips

My toys

Reading maps and reading books

I like to sit on chairs

Taking pictures

Jumping with the jump rope

Playing computer

Feeding fish

My books in library

Going to the rocket

Sitting on couches

Counting with Numbers

Drawing with crayons

Having a Story

Drinking water

I take a bath

Snuggling in bed

 

My Ro…the little things, and he is wiser than most.

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Autism: Fancy Word for Stupid.

Huh?  A Wha-wha-wha-wha-wha-WHAAATTT????!!!

Granted, this was one of the definitions for autism from urbandictionary.com (not really esteemed in the world of published text definition, but it usually cracks me up), yet some people in our society still walk around holding this belief.

I wax aut and wax off about this daily.  Not about whether persons with autism are stupid or not, because of course, I think they are beautifully unique and brilliant, but just on whether I need to school ignorant people about Ro’s (and others with ASD) intelligence. 

I used to rage like a Mama bear whenever I encountered a comment or a person that was really misinformed about the autism spectrum.  I would pull out all of the facts, give a detailed background on Ro complete with his IQ, and sometimes (regretfully) I’d even chimp him out and make him perform some of his savant skills.   And then I would bitch-slap them – no, not really, but sometimes I would fantasize about this…………………………….

he hee he hee hee………………………………………………

Oh, there I go again, sorry.

Anyway, I think I take it on a case by case basis now.  If I feel it’s important enough, maybe if the person can understand and see a little of how they were misinformed, then I might pass on correction.  Mostly, I just enjoy drawing in the air with my fingers right alongside Ro – that’s a stim that doesn’t hurt anyone, who cares if he likes to do this when he’s just relaxing and not having to pay attention.  It’s actually fun!

I still strive every day to get to the point where I am the most accepting of Ro’s autism as I can be, while still teaching him the skills that he needs to find happiness and independance when he is grown.

It’s a tough balance.

So, what do you autism Mamas do when you meet ignorance with ASD?  Do you bitch-slap them down, or do you just say, “Who cares what they think!”  ????

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p.s.  I’d like to meet someone who actually did bitch-slap some ignorant down.   Write me, and send pics of this if you have any.  Thanks.

Mama Nature vs. Mama Gillis!

We are coming out of our back porch, trying to get to the car over a huge snow and ice wall.

I am holding the back of Ro’s jacket in one hand and the back of Lowie’s in the other.   We are being so careful…step…step…pause…step…

SWOOP!!!!  There go both of the boys feet out from under them simultaneously!!  I have such a death-grip on them, and I swing them up into the air so fast, so that they won’t hit the ground – well gravity doesn’t like this for Mama – and my ass slams down onto the ice shelf so violently that I could swear I heard my tailbone scream. 

Surprising, seeing all of the canned ham protective padding I have down there…

Anyway, lightning bolts of pain are shooting throughout my butt and surrounding area, and both of my kids are shaken up, but fine, so all I can think about is, “HA!!  Mama Nature!!  You weak ass bitch!  Don’t mess with Mama Gillis!  I will WIN!!  HAHAHAHAHAHA!!!”

Score one for Mama Gillis!

Mama Nature – ZERO

bitch

Of course, you know Mama Nature is gonna send me a one two punch of a storm on Saturday night for this!!

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