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.

Planets

Last week I lost a friend.  At least I think technically I did. We used to live a few doors down from each other and my easy going Aspie connected with her son.  If I had suggested her son was also splashed with Asperger's I suspect I would have lost that friend a little bit earlier.  It's all good though, in so many ways we are all sprayed with something: Aspie, Adhd, Ocd, Anxiety, well, something neurological.

I have been dwelling on and off about losing that friendship.  In reality it was only when she was a stay at home parent and I a forced stay at home parent, we connected.  She started work while I could neither afford it or energetically absorb that and three children with special needs.  We drifted.  I saw it, I knew.  She would call me on her commute home from work....she was bored.  I was knee deep in medication needs, meltdowns and the most full on part of my day.  My father (aka asshole sperm donor) does the same.  He likes to call between dinner and bedtime.  It suits him on his Western European time frame.  I have begged he not......he forgets.  Thus, I ignore his calls.

All of the above had me over the last few weeks really absorb how others truly do NOT understand the planet of special needs, the planet of Autism.  Autism spins, regardless of your schedule, your needs or your demands.  Autism, Early Onset Bipolar, Adhd and Sensory Processing Disorder is far too busy to care about your time frame, open calendar, boredom, insomnia.

We truly are planets, I and my three continents on ours and everyone else on theirs.  Some planets are bigger than others as they hold more experiences.  That's ok.  However, remember it is only Earth, the third smallest of the solar system that holds sentient life.  One of the smallest in our solar system.  Your Planet may be massive and homogeneous,  mine is small and devoid of bullshit.  Enjoy your planet.    Make sure it doesn't burst.

I wait

We met on a Tuesday.

Honestly, I don't remember the day.  I do remember we met.  Late for us both, you were willing to call me, listen to my day, my worries, my fears.  You listened.

You never judged me, you never named me, you just listened.  Had I known how that call would have rooted itself.  If I had known what we were growing.  Perhaps it's best I didn't know, couldn't see the next 17 months. I might have run so far, or you might have never called back.  I didn't run and you called again.

Flaws and blemishes have become obvious I know, but here we are, no one's running, we both keep calling.

One day we'll meet again, perhaps on a Tuesday.

In the mean time I will await the other 6 days.

I just wait for you!

Autism Day.....same as yesterday!

April 2nd was Autism Awareness Day.  I had grand notions of links and diatribes, explanations, moving stories and emotive words.  I had my blue light bulb.  I was poised, ready.  I was about to tell you all about the enormity, the dignity and the need to pay attention.  Then I awoke.

Screams, hollers, toilet paper strewn around the house, demands for hot dogs for breakfast and oppositional defiance that makes a rock look argumentative. Out of control hyperactivity, little bodies squeezing me so hard it was beyond a hug and my kidney's were texting me to be donated.  As a sensory introvert, you may as well scrape those nails on the chalk board already.  In fact, I spent the ensuing hours playing zone defense; tag team is not just a sports analogy you know.  Somewhere in the middle one of the unholy trinity made it to therapy. It was a miracle anyone was fed today.

This is not everyday, however it's not an unusual day for me.  I can handle the large hurdles like Atlas, shoulder it and muddle on.  It's the little things that tear me down, like muscle torn with each overextended stretch.  The need to be more than parent, provider and caregiver.  It's when I have to be Father as well as Mother, when I have to be confident, best friend, play mate, punching bag and the most hated thing on the planet.  Most hated, because I love them so much I can say "No!" and stick to it.  Yes, sound like Neurotypical parenthood, doesn't it?  Now add the bubbles to the bath water.  That's autism, your typical world, effervescent, hissing, bubbling and frothing.

Aware!  Oh yes, I am aware, I have been aware for about 12 years now.  I am extremely aware that tomorrow my 8 year old son, officially diagnosed with Autism this year has to be sedated completely for a small filling.  That's $400 of awareness with dental insurance.  Autism is not aware, it is heedless.  It's agenda  is blinkered and unrelenting.  To be aware is something, to battle the heedless is noble and ironically also relentless.