Hey Bipolar Bear

In a previous blog a long time ago I referred to Jacob's Mood Disorder as Bipolar Bear. He was in the midst of a manic episode and I knew where it would end. I was spot on too; it ended up with an emergency appointment and a swift medication juggle. Here was my dilemma, I was delighted he was receiving the treatment he needed and simultaneously traumatized that once again we had barely escaped a psych ward admission. We've avoided it thus far, really minimally avoiding that threshold between outpatient and commitment. He's still little though. He was an even littler boy then. Yet today I knew from the moment I heard the sun, my bear is again sick. There is a 'normal' state of silliness and hyperactivity before his Adhd medicine focus's him. Today was different. I heard that scream, that maniacal laugh, that racing thump of ball and heel along hallways, and immediately my throat constricted and my stomach formed an introverted knot. Remember, Jacob has co-morbid disorders. Autism, Adhd, Bipolar Disorder. They Coexist like a Russian nesting dolls. Jacob's nesting doll is not finite, it's not fixed, no one neurology is bigger or smaller than the other. They hold hands and dance, twisting their pathology like a twisted ribbon on a Maypole. His dolls dip in and out of one another, they overlay, separate and return; a psychological osmosis moving though each other. His brain and neurology strike cruel tricks, cast riposte and shadow. Today it was not my Jacob, today the doll's spoke, not my bear, I only heard the dolls. Over 13 hours they laughed, screamed, cried, sobbed, raged and finally slept under the gaze, yes tears, remorse and soothing rub of nails on a 12 year old boy's little back. His body relaxed, slack and soft, and finally my bear slept. Tomorrow the doll's and I need to talk.

When Jacob asks!

When your 4 year old son decides in a fit of rage his best recourse is to attempt to break the body of an acoustic guitar over your back, his cries are suddenly heard loud and clear. At the time I was in reactionary mode; I didn't hear that muffled cry, embedded in the splintered case and sprung strings. I heard the dampened echos of something alright, but his cries were still crouched in the nonverbal corner of his autism. It was enough, it was the clearest he'd been since those first screams of afterbirth.

I sloughed off well meaning relatives, doctors and friends and he and I took that first step together. My justified fear carried me through the next few days; I blocked out the world, it's criticism, advice and judgement. Jacob and I took that broad step together into the realm of pediatric psychiatry.

He couldn't tell me much, his action with the guitar had said enough though. Eight years on and last week Jacob expressed an interest in his own medication regiment. After eight years of speaking for him, I both relieved and reluctant allowed that red headed chatterbox speak for himself. He asked to stop.

Who am I to say no? Three days in and weaned off his main mood stabilizer we wait. The wait is different now, because Jacob asked.

When My Well Is Empty

Unfortunately I don't write about the everyday things that would warrant a daily, weekly or even biweekly experience.  The Island of Autism and special needs is far more mundane than you think.  You see, us parents, teachers, leaders, go out of our way to try to make everything the same.  Changes in schedules, glitches in an everyday habit can throw our children and thus ourselves into a meltdown, anxiety attack or even as tonight proved a few flipped chairs, slammed doors and irrational yelling.

I sense you are either nodding or curious.  While tantrumming over a negative response Hannah flipped chairs, by "accident," Jacob interfered with everyone's personal space and screeched for about 30 minutes, John declared he needed space and locked his door, (the sanest of all reactions).

Slammed doors?  Oh, that would be me.  Irritable and snappy, that would be me too.  It was a long few weeks and today when school was out I was effectively on essential mode.  If you know Maslow's Hierarchy of needs I was pretty much at the base two tiers of the pyramid, although you can snip out the sex bit ;)

http://two.not2.org/psychosynthesis/articles/maslow.htm

My children would be of course given food, water, shelter, clothing and security.  Basically I was down to my absolute last enth of an ebb.  Of course you tell that to a child.  Now tell that to a child with hypersensitivity, hyper anxiety, hyper activity, and basically a need to treat your (meaning my) physical body like a lamp and they are the moth.  The more I pleaded for space, the more my two sensory seekers sought me out.  It wasn't anything mean either, just a need to feel loved, wanted, understood, held.  Still, by the evening I had nothing left in my personal well to give.  Even me, (and I know many close special needs parents can avow to this) was empty.My well was empty.

When this happens I simply need space, as simple as sitting on a bath tub with a locked door for 20 minutes; yet even then the fingers slid around under the door gap asking "Mommy...where are you!"  I found time to go walk for 30 minutes, I arrived back to hysterics as to where I had been even though they had an adult with them.  We were now in full fledged Autism and anxiety.  This continued all night in flurries and clouds of moments.  I flitted from crisis to crisis, like a ladybird with one wing.  When I felt we were all finally settled, out of nowhere I was asked something actually quite neurotypical, I don't remember what it was, most probably something simple and easy.  Yet my well was still empty.  I stormed down the hall, slammed a door, heard a picture frame crash on the ground and fumed quietly to myself.  Of course later I emerged and found my little girl playing with stickers.  I apologized and she hugged me no matter what.

Isn't is comical, we deal with the special needs as best we can,  maybe irritant and grumpily when overwhelmed,  but after that a typical child request just edges us into slamming doors and fractured picture frames?!  But, what a hug, and I know I didn't earn it.

Hierarchy and Humility

There is a natural order to things, even if the thing itself is a bit off center.  It's been around since I first became unofficially and then officially aware of my three puzzle piece's special needs.  If you are a parent I know you will relate in some fashion to what I mean, regardless of your child's needs, typical or diverse.  It's the hierarchy we are pushed into, the realm of others that technically should be on the same playing field.  It starts as soon as we tell family and friends excitedly we are expecting, then ripples out into the community as bellies show and people question.  You're in a select group now, a joyous clique.  Of course along with that comes people's opinions, advice and stories.  It's all met with appreciation, real and plastic and then there you are nuzzling with this blotchy pink warbling creature, one eye wide like Popeye; "he's a cryer..."  we all laugh.

18 months later, he's still a crier, also not speaking much, if at all.  He holds his belly a lot, writhes on the floor, spins, steps back and forth like going over the same four steps in a dance. Constant ear infections, adenoids removed, ENT's, multiple doctor's, specialists.  My clique shrinks a bit, ok it shrinks a lot.

Play dates are rare, as months and years move on birthday invites diminish to nothing.  Neighbor's whisper things you know you never want to hear.  Once you receive a definitive diagnoses, no matter what it may be, you feel validated, angry, devastated, triumphant, weak, strong all at once.  Now you know why that clique, that hierarchy of parenting had no place for you.  Surely there must be other's out there....just....like....us.

This is the kicker, yes, there is a place, a clique, in fact many many cliques.  And within' those there are sub cliques and off shoots and support groups and support groups that become support to survive the initial support group.  There are play dates, jealousies aspersions and projections  There are those who would shower you with advice and knowledge until you want to scream for a flotation device, then there are those that look you up and down like you really should take a bath, and why on Earth is your child shoe less and only in an over sized onesie. Yet most, so overwhelmed in their own closeted world have become so insulated out of fear, judgement and society; remember the one we used to know until the birthday invites vanished. Our children are still placed on pedestals to share symptoms, milestones, progressions.  However, they are also compared in terms of regressions, symptoms and diagnostics.  Sometimes it appears that if another's child is faring worse on the disability scale, you've been one upped.  It took me years to realize that these parents do actually exist and I wasn't being paranoid.  Took me years more to understand they are trapped, back in the stage of diagnoses, when they have no parental hierarchy to feel accepted.  Literally trapped in a moment in time, terrified.

In my experience, it is near impossible to find someone who can share, grieve, celebrate, cry and laugh together, certainly  in a local support structure.  Even among each other we cleave to our leaden roofs, our thick emotional walls.  The cliques are smaller yet still flourish in their own way, still most of us are frozen out. And again, as individuals we feel we are alone.

I'll be honest, I have cut out my fair share of those who I felt didn't "understand," or were too "involved" with their children's diagnoses.  Nothing puts you on your egotistical horse more than dealing with three Aspie meltdowns and seeing someone tweet or post a blog about the tough time they had at the grocery store with one.  I have also been told by several people they want nothing to do with me as they feel I am too much.  And for a long time I was, I was too much.  Don't get me wrong, I'm still a fiercefully opinionated, arrogant advocate and I am prone to pissing off one or two here and there, still experience tends to show one's humility, especially when one is ready to let it go, let it all go.  I sense my letting go may take a bit more patience and time though.  Hope that's ok.

To poo and beyond!

Shit!

After nine months of carrying them the first thing that is paid attention to is their pee and poo.  Is it yellow, orange, crystalline?  Is the poo brown, green, solid, liquid or pebble like.  These are things no one tells you in the Lamaze class or the parenting class you take prior to birth. You remember, the one where you're taught to bath a Tiny Tears knock off and change him/her. In fact those classes go out of their way to avoid the shit factor.

You float through nine months blissfully (for those allowed that grace) and when it comes to it and you bear down you may actually shit yourself.   I did as much with my 2nd baby, no epidural and no IV.  I wandered in to the ER fairly sure I was in labour. In fact I was, and 8 cm agreed with me. It was literally a pop, catch and release situation.  At some point mid push I shit myself.  A nurse swooped in, no one knew, I mean I was barely aware.  No one said, it was of course witnessed but never mentioned.  Suited me fine.

If I had known it was a bit prophetic.  This was my second baby, full term, healthy as an ox, great eater.  We dubbed him the Stepford baby for about 11 months.  Then I began to worry, ask questions, he was placid, almost vacant; he sat in his chair, watched us all, taking us all in.  By age 2 1/2 he officially had 7 words. I screamed up and down the pediatricians hallways until they either heard or sent me away.  At the time I didn't care, we weren't stagnant anymore as I was sent away to specialists.  His initial diagnosis, chronic ear infections leading to slow speech development.   I read that now and cry laughing.  How many parents of placid Autistic's get that as the initial diagnosis?  Autism came later.

Several years of speech and occupational therapy, great special education placements has meant that placid, non verbal little boy is a talkative, goofy, funny and brilliant child. To look at him he looks the same as all other NT (Neurotypical) peers.  His public self still struggles with speech and the give and take of conversation.  He is far more comfortable in his own world, space, science, math, bakugan and Skylanders.

You would never believe this brilliant nine year old really is not potty trained.

And there you have it people, they come out and all the people around you worry about their poo, then they're Nine and you are the only one worrying about their shit.  Never ends really.

Too able to be disabled

A dear friend pointed out to me I hadn't blogged in a while.  This is true.  There's no real deep reason why, honestly I've been busy.  School ended about 6 weeks ago and it's incumbent on me to tell you my children are too able to be allowed extended school year yet too disabled to attend day camp.  The boys, now 12 and 9 did attend a special needs day camp for a week.  They have gone there there there last few years.  Hannah is in a different realm, she is too able to be disabled for sure.  However, she also hugs the edge of Neurotypical enough so she craves friendship and interaction openly. I took a risk and enrolled her the same week in the day camp for typical children her age.  I mean, it was a week.  What on earth could happen?

Never ask such questions.

Cue one broken wrist through two bones and a cast from her thumb to her armpit.  The boys both declared they hate their camp and never want to return.  So, yep, I'm a tad overwhelmed.  In the interim, all three are doing their best to disembowel each other, I have applied to nursing school and roll the fuck on school ....for us....all!!!

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.

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.

The Race of Autism

Dearest Jacob,  today you caught me off guard, the way a sleeping soldier, snoozing against his wall in peacetime is suddenly jolted awake with horns and the rushing tide of the shouts of fear and unpreparedness.  There I was watching the beginning of my sports show that comes from the UK.  As usual, I only focus on the first 12 or so minutes, once it gets to rugby, golf and cricket it's already been deleted.  There you were, slumped on the couch, I was casting my eye and ears between something 'terribly important' on the internet and half taking in the initial headlines of said sport show.

The commentators spat the headlines and updates out like a fiery geyser, attempting to rev up their unknown audience.  I paid minimal attention as I awaited to hear of my football team (soccer you irreverent lot ;).  Liverpool had battered Everton in the Liverpool Derby and I was eager to see the highlights and the interviews.  I turned my head to the screen.  You asked a question; I heard you speak but not your words.  Frustrated, I asked what you said.

"Why does that man speak with a British accent Mom?"

I look to see a non UK player on the screen.  No one there but the sports anchor and his co anchor.

"Who love?"

"The man in the suit......is he faking an English accent?"

"The man on the left?"

"Yes."

"Why would you think he shouldn't have an English accent hun?"

"But he doesn't look English....."

I knew immediately why Jacob asked this innocent question, although I struggled with my immediate response. The Sports anchor was black.  I inhaled my mortification in a single breath and turned to my son.

"How many black people in America have an American accent?"

"All of them Mom."

"How many white Americans do you feel  have an American accent love?"

"About half."

"I mean not including Latino's hun."

"Oh, then, most."

"How many white people in England do you feel have an English accent?"

"Well all....duh..."

"OK, how many Black people in England have an English accent sweetie?"

Jacob's little face scrunched up, his head tilted like it always does when he is struggling with a quandary.  "Well, none.  There are no black people in England!!"

My heart snagged on emotional muscle tissue, it tore and spotted blood on my ego.   I was stunned into silence.  I have always prided myself on being a pretty liberal, left winger.  I assumed' my children were absorbing my openness by how we lived our lives and by daily family cultural osmosis.  However, add to that Jacob's brain is not wired like yours or mine.  His autism and our coexistence of almost 12 years had me fooled into believing I was in step with his cultural understanding.

He and I talked a bit about people speaking languages with accents and no matter their skin color it was based on their country and their upbringing.  I could see he understood the concept but in his mind he was shaking his neurological head. It's time Jacob met the country that gave birth to his translucent Mom, and be exposed to all of Ireland and Britain.  We are all now mixed race and inclusion, regardless of our accents.  How nice though, to deal with race based on accent and not necessarily pigmentation.  Autism is a gift.

The Chosen

I remember my Mother commenting on how the babies we bear, whether to term or not choose their life's start, in a sense choose their family.  It seemed a wonderfully easy and ethereal plane to believe in, especially as a young woman, not yet to achieve that state of pregnancy and motherhood.  In the Bible, most especially the Talmud, the Hall of Souls is known as The Guf.


"The mystical significance of The Guf is that each person is important and has a unique role which they, with their unique soul, can fulfill.  Even a newborn brings the Messiah closer simply by being born."


Such a perception and belief is comforting, knowing every soul born is a rock across the tumultuous river that we pivot and slip upon to reach the "Messiah."  Of course this is probably only so if one believes in the concreteness of the bible and /or the Talmud.  As an older child and a teenager these mystical concepts fed me like a spiritual milk.  I was so desperate to believe in a reasoning for why certain children are born with needs beyond the everyday, or why someone I knew was suddenly not "themselves" after a car wreck or a medical procedure.  Even as young as my mid teens I had a deep draw to those around me with special needs, or as I now call them, needs.  I can not explain it and I gave up a long time ago attempting to pin down why.  That is and maybe truly beyond me, that's ok too.  Not everything, including intuition or perception needs scientific swordsmanship.


Having said as much, I have been struggling with something beyond my comprehension.  After years of catechism, a lapse, an extended involvement with the Episcopal Church, I have finally found my peace with the belief there is no built gathering of stepping stones, straight and pointed across that river of spiritualism.  It is for so many a teetering balancing act, with limbs outstretched, waving, gripping their rocks; calling every mossy slip "God's will," or "faith's challenge."


Parenting my children, the ones with "needs,"  I skipped across the same stones and green, glassy rocks for so long.  I could only see the next stone, the whitening rage or mild circular flow of the river that day.  I kept looking down, fearful, what if I fall?  Will my lungs with their heaviness and the Guf would be one less original soul?  When I think back to my Mother's original epiphany, she was and is by no means a religious enforcer. She is attune with the Earth and understands the water. She has, within' her own rocks and river found a quiet peace in the midst of the torrent.  


At times, when it's quiet or when my childrens' needs conquer an unimaginable milestone, I question if they chose me from The Guf.


I have watched my Mother, with a cocked head and an inquisitive eye for years now.  How does she live midst the same surge, yet never slip or become immersed, never washes away? 


"Go gently," she atones...."go gently."  I pause, eyes fixed on her, she is not looking down, scanning the slickness of the next rock like I am.  She is hunkered down on her rock, balanced, mid stream, looking up.  Her straight poise is palpable, her hand dipped in water that dances around her fingers like a well known friend, caressing her form.  I hunker down, some stones behind her, no longer studying the next rock, or the farther shore.  I allow my hand to atone and go gently with the river laughing around my fingers.  

Dearest

Dearest,
My apologies.

It was no accident you chose me,
We were the same, raging
in a world that blinked
indifference.

A fresh soul delivered from your
warm immersion into
sensory terror.
Your brain already fighting its mismatched puzzle.
Neurons bouncing like beads clicking against the floor.

Images of warm deep embraces-edged 
into the distance.
Childhood pleasures morphed into sensory diets,
play therapies,
mood stabilizers.

No Parenting magazine knew you.

Five years besieged 
by a mind brimming
confusion. 
Wide black eyes glazed, 
never willing to meet my gaze.

No immediacy of love,
It stood in the middle distance
trepidatious, edging silently forward,
a little,
at a time.

Until the day we heard that gentle porcelain doctor say
“autism spectrum.” 

There you stood, and I saw you
for the first time
looking right at me.

Falling in and out of love!

When one's child is born with an invisible yet neurologically different need, you are met with a physically beautiful and healthy baby.  However, until symptoms appear you just see that.  When you choose to breastfeed and thus room in with him you are met with certain supports, to do with nursing, bathing and the like.  When he starts screaming at 12 hours old he is planted on your exhausted body, as apparently nursing him will stop it.  It does not.  You are left with this teeny entity that had been telling you he has been alive from 14 weeks in utero.  The nurses can't manage his needs, thus he is thrust on your lap.

In hindsight, I should have checked myself out and gone home.  At least my baby's father would be there to support me, instead of as the nurses and doctor's did; chastise me for immediately recognizing, this baby needs movement, constantly. It was instinct with me.  I walked the halls, got yelled at by night staff for doing so.  From the very moment this little boy was born he needed more than the regular world would give.  That night the nurse yelled at me for marching the halls with him. I in post partum glory told her she was a fucking cunt and she could fuck herself.  Suddenly I was listened to, was given the empty neo natal unit and a rocking chair.

My life with Jacob began with me fighting for him, and I have no doubt will end with it.

Here we are almost 12 years later, I have two other kids, both with needs of their own.  The issue with having children with or without invisible disabilities is, you fall in love, out of love and in love again.  Of course you always "Love" them, however, their needs, personalities, behaviors and reactions truly test you to the point of wanting to run away.  Yes, I have googled how to run away.  You may judge, like I see society easily do, or you can at lease listen.  We do not want your pity or your judgement, just understanding.

We fall in and out of love with our children all the time, yet for some reason, the special needs parent is berated the most when they admit to this.

I was censured and made feel like dross the night I instinctively knew this child needed to be walked.  Next time you see a parent with an out of control child.........think, count to ten and ask yourself.  "Is this my place to judge?"

You know what, I still "walk" Jacob, in different ways now, although no one ever bother's to ask how.  How sad, and what a waste of marvelous information.

An Unexpected Gift

Life has for want of a better analogy been a bit of a roller coaster lately.  No, let me clarify, roller coaster with Nascar and Drunk Driving joyrider's thrown in for good measure.  I traced it out on a blog post months back, but to re illustrate I was not born here in the US.  I have however been a legal resident some 13 years now.

Being an immigrant is such a deep and shadowy well, most of us smile through it and the ignorant questions (yes, we do have dogs in Ireland, yes someone really asked me that once). Over time we learn to use the wattle and sinew from our experience and build domed walls around us with carefully chosen trapdoors and side tunnels, so we can enter and exit these wax work personas.  These same doors are allowed let other's enter, although we in many ways blindfold them and move the doors once they leave our domed shield.

It takes many years and some considerable self awareness to reach that state of understanding.  I have known many an Irish immigrant who went the opposite way, family included, adopting their new culture and country too fast and furiously, burying any ashes from their existence of origin.  I can understand that as well.  The pressure to assimilate and blend in is overwhelming, some days it may just be easier to give in.  This has never been the case for me; in fact as I mature and get older my need for self identity as being Irish grows stronger.  It has taken 13 years but I have finally begun to separate out the two spaces that occupy my existence.  One does not have to push against the other, and the other does not need to pull away so forcefully.

In fact, the more I mature, the more I see that both can coexist comfortably.  This does not have to be a battle where the trap doors and tunnels must move like the stairs at Hogwarts.  One does not out measure the other, despite geography.  This is less about geography, or even culture; this is about identity.  Identity is not born, it is developed, it is nurtured and molded and held and wanted.

By last Fall, 2011, I was ready to cease this tug of war within' my soul and I let it all go.  As such, on Thursday, January 19th, 2012 at 9:45am eastern Standard Time I interviewed and passed for US citizenship.  Well, technically I have been "recommended" for citizenship, a formality.  Last but not least will be a swearing in ceremony and I say farewell to that piece of plastic that has kept me legal these last 13 years, the Green Card (that oddly enough was always a mottled brown.)

I have begun to tear down that muddied dome and throw open it's doors.

There is something infinitely more powerful here though.  Back in 2000 and I was interviewing for my Green Card, the officer conducting the interview insisted if I did not take my then husband's name it was a "severe red flag."  Essentially I was bullied into taking a name my spouse and I had discussed would never be an option.  I left that interview and instead of elation as I had been promised my Permanent Resident's card within' three weeks, but rather in an odd sense stripped of something, something important.

This week, 13 years later the answer sparkled clear, like the Northern Light's on my mind, when the olive skinned, petite and shining officer asked me, "and what name would you like on your naturalization Certificate, your maiden or married name?"  A smile rippled over my face, "I can choose?'.  "Of course."

It's been 13 years, and after I tear down the rest of these muddy, dry clay walls, I get the greatest gift, citizenship of course, but more importantly, I get my name., Deirdre Maria McCarthy-Dillon, my identity.

Cutting Through

I've never been a cutter...ever.  However, I have immense empathy for those that do.  My first exposure to it was in college.  A sweet guy from Newcastle, we shared a bed, just held each other all night.  I thought how incredible he was he never pushed his sexual agenda.  Next morning he showed me his scars.  I was 20 and I completely flipped out and dashed down to my friend's room.

This was foreign to me, this was new, this was terrifying.  I suspect my instincts were solid, although I handled it badly.  He was a sweet man who felt comfortable enough to share his most secret history.  I abandoned him, I ran, without stopping to think and ask "why?"  Yes, I was a kid, I was inexperienced and I was selfish.  Today, it would be a very different situation.  I have been through so much trauma, I would now sit up and listen to the sweet gentle giant from Newcastle.  Not suggesting there was a relationship in the wings, but certainly a dialogue.  I let that man down.  He reached out, I pushed back so hard he fell over the precipice.

Something similar happened last night.  I reached out.  I bared my 'scars' and instead was met with compassion beyond compare. Complete stranger's as well as trusted friends and intimate loves, the latter two I was beginning to shut out from simple fear, reached out.  The crowd gathered around me and circled me like a comforting quit.

I have never been a cutter, but I understand those that do.  Numbness needs a razor blade.  We cut when on our own, I choose not to be on my own anymore.