Different is OK!

I am prone to the odd documentary or even feature where the protagonist or central theme involves autism.  Tonight I just finally finished "Dad's in Heaven with Nixon." Yes, alright, I'm more than prone, blame it on my back ground in Film Studies and having three silly Aspie beans.  Most films and documentaries about Autism are hit and miss.  One I may have been angsting for might be rather disappointing, while one that I stumble upon purely accidentally is flat out enlightening.  The reality is Autism and film has has a rather "interesting" history.

I think this is where I am expected to laud the acting ability of Dustin Hoffman in Rainman.  Forgive me if I don't.  It may be exquisitely acted, have a fantastic sophomoric dalliance with relating to a person with autism, but please people it is an extreme, so far to the fantastical edge of reality it really has no place in the muck and mire of Kanner's Autism, Asperger's Syndrome, Pervasive Developmental Delay, Pervasive Developmental Delay (NOS), Retts Syndrome, Fragile X and yes, ADHD.

See what I did there?  I took the perfect isolation of a Hollywood reflection of what so much of the public still consider's Autism and just bombarded you with real diagnostic reality.

Many of my compadres in blogging crime have already written about the impending changes in the DSM (Diagnostic and Statistical Manuel of Mental Disorders).  The DSM was envisioned just before the end of WWI.  I can only assume the pervasiveness of Freud, Jung and the burgeoning of psychiatry as a legitimate field was finally permeating.  Unfortunately it certainly didn't mean the new born DSM was all that helpful.  Still, it was the only real starting point modern day psychiatry had in terms of cohesive understanding.  If I were to dissect each DSM and it's tangents I'd be here for years, into two Phd's and you would all be long gone screaming into the wilderness.

What I do want to focus on is what happened between 1980 and today.  The DSM III emerged the year the US boycotted the Olympics (just thought I'd throw that in there, well, because I can).  Sometime around 1986 Homosexuality was removed from the DSM as a mental illness; perhaps that may give you an inkling as to the sludge still stuck to the moral and well being of these supposed objective specialists.

The DSM morphed into it's fourth Doctor (Nerd speak), in 1994, a mere three years after Asperger's Syndrome was formerly introduced to the English Speaking Psychiatric world by Uta Frith.  Never mind, the syndrome was named after it's original identifier, Han's Asperger in 1944.  Unfortunately, he had the audacity to be Austrian, speak and publish in German right at the end of WWII.  Who knows what other brilliant mind's work was ignored at the time.  Miracle his work was found and researched.

From the early 1990's thousands of children, adults, families of deceased relatives have been able to put a face to the way these brains worked.  Give it a name, accept it's not a fault and try to move on.  Do you remember the awkward kid in school?  I know you do.  The one that talked odd, perhaps had monotone inflections, talked in a monologue about his or her personal fascination.  They may have been non Athletic, bullied in the locker room or the changing room, maybe you egged it on.  They just weren't 'normal.'  If you say no, I see brown brimming in your eyeballs.  I can say now, it's ok, you were a kid too.  No one suggested you to lay off, step up or ask that kid to sit with you at lunch.

There is nothing as satisfying as having lived with a neurological or mood disorder all your life and finally it be explained as organic, developmental, not typical, but much more important, NOT YOUR FAULT!  Once upon a time Mother's were blamed for their infant's autism, due to Refrigerator Mother's.  They supposedly didn't hold or bond enough with their children.  Please note it was the 1950's/60's and no one was calling out Refrigerator Father's.

The DSM V will be published officially in May next year (2013).  From what I can gather, (remember it's a blog, not a news reel) all genetic connections to Autism shall also be dropped from the DSM.  There's an argument on both sides here.  I know in my son's self contained classroom, he is moderate Autistic, seeping into Asperger's; he also has significant challenges with a mood disorder and Adhd.  Not at all uncommon.  He has classmates with Rett's Syndrome, Fragile X and Tubular Sclerosis, yet all benefit from similar special education instruction.  Come the advent of the DSM V those with genetic disorders lose all DSM notice and all other's are lumped under Autism Spectrum Disorder (ASD).

For two of my three special needs children they will qualify under the new DSM V. It's ok for them.  My youngest likes to play with the edges of Asperger's and as she grows I could certainly see a burgeoning Aspie diagnoses.  However, under the DSM V's guidelines most probably not, as Asperger's will be gone.  Will she lose out?  Will she do ok no matter what?  How do I know, all I do know is another possible bridge, another future support has been erased for her.  Where will our fringe children go when all the rope ladders have been cut?  I would hope, they go to your children.  Why?  Because perhaps you have taught them that classmate that talked odd, perhaps had monotone inflection, talked in a monologue about his or her personal fascination, was not athletic, and bullied in the locker room or the changing room, was just different.  Different is ok, it's more than ok! Oh and she'll do his math homework for fun ;-)

Autism in the mirror

Jacob stormed through the door yesterday, stomped up the six steps to the living room, slumped in a heap on the sofa.  His face was screwed up in frustrated annoyance.  First words out of his mouth, "I'm tired of people who don't want to understand my autism!"  As the parent, you have to think of the two worlds I inhabited at that moment.  The one where I wanted to find the bastard that made my boy feel this way, and the one where I was doing a mental and emotional dance that Jacob was finally articulating his feelings with autism.

I learned several years ago to delve in with a plethora of questions only confuses and separates from the experience.  I was folding laundry, looked nonplussed, "Oh yeah, did something happen?"  My hands were folding, my mind was in an origami of worry and anticipation.

There is a boy on the school bus, he quizzed Jacob about his Autism.  Said boy also shared his 'college' level reading level and his 'genius' with genetics.  Of course my literal Autie heard this and swallowed it whole.

Nothing impresses Jacob more than an exceptional knowledge of Marvel Heroes, Pirates, Star Wars and what the actual term "Google" means,  than a clever peer.  I doubt this child was "clever" in the way Jacob perceived; however, I knew Jake needed to believe it.

Jacob went on to tell me how he tried to explain autism to this boy.  He compared it to brains being wired differently, that it can not be outgrown and there are many people with Autism in their older years who still can not find a way to connect and fit in.  Apparently College boy demanded "but you could TRY to be more normal."  It was Jacob's response that stopped my folding.  "Well, what is normal?  No thanks I like my autism."

He burst through the door, angry, frustrated, perplexed and agitated, not because College boy judged him, but he wasn't willing to listen to him.  Now who is the one enveloped with "the notion of morbid self absorbsion?"

For Karen and our strong wee boar

I found myself making a silly joke on a social network tonight that I have no mates.  Of course all my real mates came running and pointed out how wrong I was, and indeed I was.  However, said friends are also between 600 and 3000 miles away.  I have been in Suburban Atlanta for just about six years now and this is how I know I have no close friends.  When schools and camps ask for an emergency contact I am stumped.  I learned fairly recently, I don't do peripheral, polite shoulder rubs.  I really have tried, but it is so against my nature it physically hurts.  Either you have my back and I have yours or else piss off.  I suspect this is a combination of being an only child, coming from a "broken" home and being an immigrant.  Special needs kids is icing.

My best friend, who is 600 miles off, and I should never have left understands.  She posted a half joke tonight about running from play dates now she knows best.  I completely understand that, on two levels; it's less about the children and so much more about those perfect Mommy's validating their perfect vocation.  Also, for my friend and I, our special needs children have placed us on a different plain, perhaps a different dimension.  I remember the day she threw her gorgeous baby boy into my arms and demanded I feel his soft spot and I agreed, he was too old to have a soft spot.  At that moment she was well within her rights to slap me upside the head, instead, I was allowed hold her baby.  Now, that's a true friend!!!

My Invisible Disability!

I have spent so much time and well forged energy allowing my children a space to have a safe space to have their needs, typical or otherwise center stage.  In fact none of them are really aware I blog about them; the good, the bad and the ever so often ugly.  I have not I realize shared my story in the realm of invisible disabilities.  It actually started at birth.  I was born with a congenial cataract.  It was no one's fault, in fact when I realize what could have developed a single cataract seems fabulous.  Yes, I has a cloudy, gammy eye for a few years.  A few surgeries later, ok, four, it's as good as it gets.  Perhaps another surgery on the horizon, but nothing major.  Just can't be drafted into the army.....dammit!!

I am fairly sure I was an undiagnosed ADHD child/student.  I suspect those who know me as a child ,or teen or a relative are chuckling knowingly right about now.  Of course meds were minimal to non existent where I was raised.  Still, I found a way through a college education.  I emigrated, married, had my three special needs kids; they and their needs consumed me.  Well, they had to, I was their only voice for so long.  I was diagnosed with low B12 and I am receiving B12 shots.

Which brings me to today.  The last 8 months, maybe even a year I have been plagued with these bizarre seizure like episodes.  To the outsider, they appear mild.  I glaze over and within' minutes I simply have to lay down.  I know by the time I lay down I will fall asleep.  This is not optional, there is now way to keep me awake.  I sleep between 45 minutes and two hours.  It's a dead sleep, no dreams, no outside noise penetrates.

My GP suggested I just avoid the foods that triggers these episodes.  However, that is easier said than done.  I don't know a trigger until I collapse.  The only beneficial help has been an all vegetarian dirt.  Once I introduce fats, carbs and especially meat protein, it's Goodnight!  Tonight, I ate fried chicken.  I had avoided meat for weeks.  I was in a bind and had to eat something.  Made it home and within thirty minutes I seized and was in the deepest sleep you could imagine.  I am becoming quite ticked that my GP won't listen to me.  "Avoiding" trigger foods is NOT my idea of finding the most important answer....why?

When typical gets a techie push

Jacob (12) begged for a phone the last few months.  I held off for all the normal parental worries, he's more vulnerable, what's the point, he has no real friends, he's not tech savvy enough.  I was right about not having immediate peers (for now) to text, but it hasn't stopped him communicating with me via text the last three days.

In fact, I am amazed at his ability to check spelling, grammar, punctuation and the fact his text's are a right gas (Irish for a giggle).  He is my highly verbal Autie that struggles so hard at getting his thoughts from his brain to his oral features. His frustration so evident when his message is misinterpreted or brushed off.  I could easily say I have communicated more with my 12 year old via text than verbally the last 3 days than ever.  As such I have upped his texts to 500 for $5.00.  I am thoroughly enjoying this new side of Jacob, and love him asking me something as simple as he is on the bus home, he loves me but I shouldn't sat say I do in front of his friends. His Last text , "On bus home...oh and please don't call me love."  Of course I replied "Ok hunny, bunny boo."  His response "Ok, you can call me love."  Now, how typical 12 year old boy is that???

Today was a GREAT DAY!!!

That cup is half...no it's empty!

I started following a few blogs, twitter and facebok pages recently as April was Autism awareness month.  For the most part I found a great deal of supportive and real life "Aha" experiences.  However, I also found a great deal of those that posted how they wouldn't change their children or family member's one iota.  This got me thinking, in fact it got me soul searching.

Of course I know and accept my children (Jacob-12, ASD, BP, ADHD, etc etc; Cormac-8, Aspergers, SPD, etc etc; Hannah-5, Adhd, SPD) are perfect as they are as that is the way they are made....hard wired so to speak.  I was left thinking.  My two boys really, I mean REALLY struggle with peer interactions.  Neither have "friends" outside of school relationships and even then it's heavily patrolled and orchestrated by a wonderful school.

However, the pressure is on by the Autie world at large to accept them to the point that I push away all else.  I'm not sure I can, in fact I know I can't.  Of course I embrace their unique perspective on the world; I learn more than any Professor with a Phd some days, just during dinner.  However, I also catch their pain, their loneliness, their isolation.  Some days, like today, when my cup has been mentally and emotionally drained I am guilty of snapping, pushing away and after I calm down feeling like a complete failure.

I know tomorrow my cup will be full again, I will accept and embrace again, but please no one judge me because when it's empty I just need some space, a break, or even a dumb joke on twitter.  Autism is a double edged sword.

Caregiver

"You can only handle what God gives you.......You're SuperMom..............I don't know how you do it."  Remind you of anyone?  Fecal streams of platitudes like that only exude from those who do not deal with special needs everyday.  They truly mean well, but after the 75th version of the same phrase you become numb to it all.  That's the peripheral edging I hear on a daily basis being parent to my three.  I get a thump on the back and nothing else.  Nice, but in all honesty, empty.

I was thinking the last few days about caregivers.  I had to rewrite my CV /resume recently.  In fact I had to rewrite it about four times, depending on the job application.  Despite my numerous diplomas, degrees, job experience and post grad work I had to explain being out of the taxpaying workforce the last 6 years.  Stay at home Mom doesn't quite cut it, especially if those reading said resume actually knew what that meant.

I chose the title caregiver, (perhaps all stay at home parents should really).  I have given my all to three very brilliant yet also very dependent children.  My, and their Father's sacrifice for these children has had them move three times in two states, file bankruptcy, deal with foreclosure and still live paycheque to paycheque.  (That's paycheck for all American types;)

Caregiver!! Just looks like a filler on a resume to explain away babies at expensive preschools while Mommy plays tennis.  If my prospective employers really knew about what it really stands for; resilience, tenacity, unconditional love, righteous anger, hitting that mat every day for our child.  If they only knew, they'd beg us for the same commitment.