The PTSD of ASD and BP!

War, conflict, psychological assault.  Post Traumatic Stress Disorder.  Quick, scan around for the dismembered soldier.  That's the rule right, only applies to boys and girls with blown off limbs, that we then fawn over and thank endlessly for their service, regardless of what that "service" entailed.  It's not these people in uniform that we should question for the reverence for the military, a reverence that boarders on psychotic sycophantic God worship.  I have see the latter in people I would call friends, who outside of this deification of the military are quite rational and reasonable.

The military, especially in the post September 11th world appear to have a patent on PTSD.  I know it's unbelievably prevalent in the forces and as they have all filtered home since the end of the Iraq War it will bubble up in the societal euphoria, thus quashing it like sand kicked on the glowing embers.  PTSD though is a human condition, not quartered off by the need to enter a mine riddled desert or IED strewn dust road.

Autism, Pediatric Bipolar Disorder.... ha, gotcha.  See the first sentence again.  The experience is so very different, the road not as dust ridden and choking.  Still the psychological experience, the reaction, the outcome, unless treated is the same.  

"Psychiatrists believe that PTSD can only be correctly diagnosed after at least a month has passed since the traumatic event. Before then the condition is considered a post-traumatic stress, but not yet post traumatic stress disorder. In addition the person must display all 3 classes of PTSD symptoms & necessary bases to differentiate it from other mental disorders.

• Class 1 symptoms: the sufferer re-experiences the traumatic incident
  ex. nightmares, flashbacks.
• Class 2 symptoms: the sufferer displays avoidance, wants to stay away from anything that may possibly remind her/him of the trauma. May also display lack of responsiveness or interest to all life circumstances.
  ex. sights, smells, sounds, conversations associated or reminding of trauma, unable to enjoy once joyful activities or have loving feelings
• Class 3 symptoms: hyperarousal
  ex.  irritable all the time or inability to sleep.

To raise and parent a child with a complicated neurological disorder is a draining existence, especially for the primary caregiver, usually the Mother.  Let me explain my symptoms as I hold my beating scarred heart in my trembling hand for you all.  I don't really have nightmares or flashbacks per se, although I do have vivid dreams, almost always being chased by people who are supposed to love and accept me unconditionally.  I do avoid, I stay indoors, I dislike meeting new people; it's a mental and emotional wrench to even answer the phone to close friends.  Mainly as they wish to talk about fluff; I am no where near fluff on a daily basis.

I have a marvelous wall, it has a retractable trigger, it can shuttle up or down depending on my mood, my company or my environment.  I used to read constantly, everywhere even  as I walked, I mean I would shove books under my school sweater and sneak out to recess with it just to read.  These days I can barely get though an article without losing focus.  I do not sleep.  I nap.  It's the best I can manage.  I am scolded constantly by those who truly love me that I never sleep, or sleep awkward hours.  I liken it to a recurring illness.  I can not control it. 

Irritable.

I laugh in a silly ironic way here.  I spend my days pulling myself out of irritability and living an open, cheerful exterior for the one's I love.  Periodically I slip, little things trigger me.  Having said that I have always been like that with irritability and anger, but an abusive alcoholic father and childhood sexual abuse ensured that one, (no the sexual abuse was not due to my father.....put your knives away ;).

I was dealing with my PTSD (as we all do in our own way) and slowly working through it.  Then life gave me childhood neurological disorders, from birth.  Jacob came out screaming and throwing up, and it didn't stop for two years.  By the time he was three I 'knew' this was something else.  Took another year to get a psychiatrist to concur. John arrived in a gentle earthquake, happy, quiet and non verbal until he was four.  Again I 'knew.'  I spent the next 6 years with psychiatrists, psychologists, neuropsychologists, developmental pediatricians, special schools, special education meetings, occupational, speech therapy.  I fought with the state for medicaid, I fought with anyone who tried to nail my children into their designated corner. I simply fought.; I fought all....the....time.

It got to the point that anyone who even raised a quizzical eyebrow was deemed an enemy combatant and I was in immediate conflict .  I have been doing this for 11 years.  I am burnt out.  I have nightmares, I avoid life, I choose numbness over feeling, my central nervous system is in constant flux.  

I am tired, yet, I know no other life.  PTSD is like the Python that consumes prey.  We are digested slowly.

  

Lollie Laughs

It was agreed upon.
I knew we were to meet; her photograph presented, yellowed with age and youth,
On the bus I held his hand, the one with the serrated scar.  I trace it's zagging map with the pad of my finger,
Comforting.  A trauma story told in each depression and jagged rivet,  x-rayed against the light touch of my swirling print.

Chattering's of a thousand women saturate the top deck, embroiling it in the years of gossip and floral scented regret. Today, the bones of women talk about nothing, talk about everything.

We do not talk, we sit, hold hands, I trace his trauma.

Stop please!

The gates are wrought with iron, imbued with hands that have pushed and pulled for one and a half centuries. Our steps mocked with each pebbled cry, and swift stride.  His mission pure.  He knows she is here. She knows too.  I can hear her, she's laughing. I think we would have played together once.

Trudging slender lanes of pebble, dust and marble.  Cracked tombs like gaping open jaws.  I ignore them, he hears her.  He knows her playground is here.

Grandmother May's etched name embraces her in stone, warming it. Twin yellow tall stemmed flowers sit at it's margin, one knocked over in slain solitude.

Instinct affects me like an electron; a leap and it's fixed.

A need to leave something overwhelms me.  I do not.  Standing, we share and it's done.  I walk with him, holding his trauma in hand, I squeeze it a little harder.  Lollie laughs.

Nice to connect!

It's important to be real.  If I'm not I will implode, both physically and emotionally.  Raising three kids is work (of course), raising three with special needs is beyond that, that is a cosmic production.

I bring up being real as I have found so many special needs parents, especially Mother's, are intent on sculpting themselves into these pert, wee 'every mom.'  They were given these angels for a reason and God dammit they will make sure they are painted into all corners of the globe and with a bullhorn just in case.  People retweet and share lovely, cosy, fluffy links on being a parent with a special needs kid.  Not just "us" Moms, but others, who only read what they want....only see what they are comfortable with.  Yes, yes this is life.  Reality and ick and tar and feathers and cold hard glares in cracked mirrors is not socially acceptable.

Too heavy?  I agree.  Today I was in the grocery store, by myself, thrilled with wheeling around the cart like it was on crack...mini vacation.  I watch a perfectly quaffed, very attractive Mum swoop by with two toddler aged boys in her cart.

One made a break for it; I mean a full on sidekick, slash, upside down lower body backwards thrust out of it. It was a fucking sight to behold.  Oh for Ashton Kutcher and his camera then!  I was mesmerized as I watched Mum yank said prodigy back by his undies, like an act from Cirque De Soleil, all the while politely swearing and he roaring in all his stolen glory.  She caught my chuckle, looked mortified and tried at act like nothing had happened. We all know, I am not exactly the shrinking violet kind, so I did say "Hey, got three myself."  Her face melted like a gooey smore.

Why do I write about this?  Well, after the last few days of feeling awful sorry for myself (which I refuse to take back) I was witness to a typical reality for a million Mums out there.  There was a moment, a connection,  a chink in my armor was loosened.  In essence, these wee bastards are hard fuckin' work.  Still, periodically we can grab them by the knickers and look up and another parent gives a look that communicates "Ok...you too???"

The Innocence and the Ecstasy

There is a rather sweet, yet saintly twisted like belief that children with disabilities, especially neurological or mental are the embodiment of everything we have deemed to be pure, holy, untarnished and I suppose perhaps even Godlike, (would probably help here if I actually believed in one, oops.)  We have all dealt at some point with the notion that children with Down's Syndrome are the epitome of light, laughter, ethereal light and unbridled affection and love; whether that be a personal connection, a bad Hallmark movie or a sweet article in People, as there was this week about Jaimie Foxx's little sister with Down's.

There I was hanging in my Gyno's waiting room, with instinctive legs crossed tight, coffee stapled to my lips I casually picked up People, (hey I was desperate for mental bubble gum).  There it was, Kim Kardashian and her'marriage/divorce', something about some nobody not knowing she was living with a serial killer for a decade, and buried in the middle Jamie Foxx and his sister.  Instinctively and almost feral like, I ripped to the center of the rag so desperately to believe it was attempting to raise Down's awareness, about how much jamie Foxx adored and aided his sister (which I do not doubt).  I clawed at the belief that here was someone with celebrity status that could finally enter the disabled world and invite us in with him.  I suspect he might have thought that initially, but add in four assistant editors and a deadline, what was left was kitsch, glitter and for me, a burning blush of embarrassment.  A feeling of, how does this really ....help?

A quick gathering of my emotional wits and an equally stealthy realization, of course it doesn't.  The article did exactly as it's editorial slant demanded; mental disability is cute, cuddly, huggable and easy to dress up and douse in proverbial glitter, tree sap and sugar free syrup, especially when it lives in big brother's mansion with  "other family members."  Can't speak for anyone else's interpretation of that but I distinctly heard the echos of "caregivers" there.

"What you got against Down's Syndrome eh?" I hear you cry, or at least mutter beneath the canopy of your brain matter.  Fuck all of course!  What I do take rather massive issue with is how we in society allow the media tell us how to feel and express our relationship with disability.  We want the Children's Miracle Network story, the tears to the eyes Special Olympics commercial, we crave the St.Jude's Hospital telethon; we want to be told how to perceive and how to feel about disability.  Hell, of course we do, it's foreign, different, in our peripheral vision, even when it stares us in the iris.

My first job (post paper route years) was to care for a wee girl and her two brothers. When I first met Chloe she was 4, her brother's 8 and 10. Chloe was a giggle pot, she was curious, compassionate,  a hug monster. She would also throw the best tantrum over not getting an extra biscuit or getting to go to the beach to dig holes as it was pouring out. I probably still have bruises from those typical 4 year old outbursts.  Chloe was in most ways a typical 4 year old, she also happened to have an extra chromosome.....um...called...whatsit...oh yes, Down's Syndrome.  I cared for Chloe and her brothers for most of my teen years; summers and Saturdays, Christmas and New Years Eves, (hey, was great money, and well, I liked the wee boogers.)

Little did I know my first real paid job would morph into my life long work, raising my three neurologically and sensory challenged children. ( Hmm, might need to reconsider that Spiritual entity thing after all;)

There is an innocence that envelopes our children, especially those who think differently.  Sometimes that difference is marked by an obvious tattoo, like an additional chromosome, or a deleted long arm of one, or perhaps there is no known explanation but we know autism when we see it.  There is also skimming close to the surface the nose of the personality that was there from conception, was there from crowning, there from that first, maybe labored fluid choked breath.  The hardest thing we as humans will ever have to do is to reach beyond the perception and meet others in the middle.  There is ecstasy in the connection, the innocence is a wonderful bonus.

Bully Off!

We have a new entity trailing us.  It is stuck to the sole of my relationship with my Jake, like gum that stretches against the surface.  Bullying!  It has so many connotations...again a spectrum behavior.  It can be anything from a mumbled insult to a physical onslaught.  I had seen this spectrum like animal softly paw it's way in to my Jake's world; I was waiting to decide if it was something that warranted reaction on my part.

After today, obviously the answer is a resounding "yes."  Jake has been the butt of this soft, cowardly excess of childhood the last month now.  He (I call him Slither) has been subtle...dare I say it, even clever.  He is an excellent reader of Jake's behaviors and language. He can pin point a button to push, a switch to flick, a moment to be exploited.  He slither's back into his cowardice and delights in Jake's explosive belief in social justice, which is one of Jake's best qualities as well as his biggest challenge.

To think that this Slither is taking advantage of my darling's biggest asset and weakness and relishing in the outcome...well, you can imagine.  Today Slither was lucky Jake has a Behavior Implementation Plan (BIP), it  is something Jake values above all else at school.  Otherwise that child would have had his arse handed to him in a sling.  I would be disingenuous if I didn't admit, I would take a school suspension over my boy defending himself and his self worth.

The issue with many, if not most Aspies is, they have a black and white view of Neurotypical behavior.  There are no nuances, no subtleties, just a yes and no response.  Subtleties are not absorbed, they have to be taught, retaught, reintroduced and reminded.  Slither was lucky today.  Jake used his learned behaviors and refrained.  He did however come home raging and told me all (I speak fluent Aspie); two emails later and Jake knowing his Mum is on his side, he calmed down.

Slither better watch his back, he now has two sets on eyes on him, Jake's and Momma Bear.  She makes Bipolar Bear look like a cuddly toy poodle.

Twas the Night Before the IEP

What's an IEP I hear?  In three complicated education jargon words, Individualized Education Program. It's a legal promise to meet the student where they are and to help scaffold them to the best of their academic ability and potential.  Again I pay homage to IDEA (Individuals with Disabilities in Education Act) and it's founding Father ADA (Americans with Disability Act).  These laws are why I am still in the US.

I have Jake's IEP tomorrow.  We have our annual team meeting and it always creeps up on me.  The "Team" consists of his regular ed teachers, his collaborative teachers, his special ed teacher, his special ed facilitator, Doctor Seuss, Thing One and Thing Two and the cast of Growing pains (circa ages ago).

In terms of IEP's, I've had had uneventful ones, combative ones, pissy ones and on occasion sobbing on the floor ones.  I can guarantee tomorrow's will be neither uneventful and yes, I'm fairly sure I will be crying by noon. If you've been following along Jake is having a challenging academic year.  Tomorrow I will have to sign off on taking the two steps back after the three steps forward.  Regular education still eludes my darling boy.  He's bright enough, IQ in the 120's, crafty, witty and flat out silly and funny.  Hell knows, he tried; he worked his butt off trying to prove he could be the best student, peer, son, brother and preteen smelly yoke (showers are again optional).  Still, Bipolar Bear is yawning in it's cave, refusing to bed down and Jake needs some containing and to be held, emotionally and mentally.  So back to self contained we go for most (not all) of his academics.  I am so proud of my boy, he did the best he could.  Now it's time for him to be the best he can.

Sleep Bipolar Bear...sleep!

I apologize for the gap between posts, it's been a hectic couple of months to say the least.  The family moved house and thus school districts.  We are in a smaller more dilapidated house and as we are renting we really can do very little to improve it during the lease cycle.  Along with the obvious transitional hurdles; new schools, new teachers, new academic expectations we are also dealing with new symptoms of an old companion.  Namely Early Onset Bipolar ones.

I can not remember if I went into much detail in previous posts about Early Onset Bipolar Disorder (EOBDO), today though I feel compelled, if not for me for my beautiful and amazingly creative son, Jacob.

The reality is Mood Disorders are as prevalent in the pediatric community as they are in the adult.  Mood disorders are not caused, they are not brought on by lifestyle choice, substance abuse or cast down by El Diablo;)  They are a genetic "gift."  No different that hair or eye colour, inherited personality traits or if we pick the piece of chalk up with our left or right hand as a toddler.   The Mood Disorder is a sleeping giant, it does not even know it slumbers beneath the person's psyche.  It purrs amongst all the other sleeping traits than develop with time and like the ugly duckling is what it is; it is neither good, nor bad, it is what it is.  It is black and white, it has no agenda, no ideology.  It is as organic as our biological cravings or need to walk in the sunshine.

We as humans give it a personality, judgement, identity and a face.  We paint mood disorder as if it has arms and legs and a tail that whips at the world.  Makes sense, we anthropomorphize the animals around us, why not the ones that prowl our minds (see what I did just there?)

My oldest, Jacob transverses multiple dimensions of comorbidity.  Sounds grand doesn't it?  Essentially he has overlapping neurological disorders: Autism, Adhd and Early Onset Bipolar Disorder.  We have come a thousand lifetimes with Jacob's journey, hit so many peaks and valleys.  At the ripe old age of 11 years, 7 months and a few days we are again in the valley.  New school, new routine, new expectations. Add to that the move, growth spurt, hormones, life then being a little boy still clinging to the safety of his Mother's leg, the fear so evident in his eyes.  A Mother's fear to gently peel those arms away from her leg, he must feel he is walking in a tightrope that criss crosses and deceives the walker.

How can we wonder why his bipolar companion awoke from it's stable slumber and declared "I WILL hold you......come dance and play with me."  Jacob's terror and fascination is palpable.

Tomorrow Jacob and I will visit his doctor to find a way to calm his inner world and put to bed Bipolar....it truly needs to sleep....again, until another day.

Learning Disabled...not a bit!

One in six children have a learning disorder.  Did you know that; do you even know what that means in the grand plethora of schemes?  It means 16% of school age children have a learning disability. Still not feeling the magnitude of the numerals?  In John's school alone of the 800 students, 128 have a learning disorder.  So in the average class size of say 25, roughly 4 students will have a learning disability.

Of course it's easy to throw out numbers, stats and raw information.  It removes the personal facet of  the reality of these children.  Learning disability, LD!  Some have suggested it's merely the PC label for thick or dumb, or horror of horrors, retard (a personal 'favorite').  I have known supposed "retarded" autistic children who wear GPS tracker anklets to know where every pair of scissors in theirs and three neighboring houses are.  John can tell you anything you would ever need to know about Dinosaurs and Pokemon.  Jacob used the word delusional correctly in a sentence this evening...he's 11. Focused and tunnel vision, perhaps, retarded...hardly?

We all carry aspects of a learning disability within us.  They're called strengths and weaknesses; remember prospective employers ask about both all the time.  I think about the incredibly gifted people in my life who struggle with something as basic as contractions and homonyms because in our day LD was "thick," "stupid," "retarded," or "slow." My LD kids work a bit harder than the other 84% do, but I suspect there are parts of my 1 in 6 babies that 84% relish.  After all, who else can know the solar system in such intimate detail as John....when he was 4?  Next time you want to attack someone because their there, their, they're isn't perfect, or where, were, we're is off you'll remember this and stop yourself.  1 in 6 is not thick, we just think differently.  So did Newton.

Being a soft kid!

There is a curse amongst most (if not all) stay at home parents.  Finding companionship, human interaction, adult interjection, anyone BUT children.  As much as we adore them our children,  I have been an at home parent for over 6 years now, which by the way was not on my to do list.  Having said that, neither was my adventure into autism, adhd and sensory processing disorder. (What you missed out???)

The latter three has imprinted on me a need to give everyone about 15 chances before writing them off.  That's about 14 chances more than most give and there's both good and bad to both judgements.  One is reactionary, albeit instinctive.  It reads a situation, renders a decision, executes a judgement and wipes off hands.  The other is the sad arsed bleeding heart reactionary (that on occasion would be me).  I have seen so much diversity, reasons why people act the way they do I often (no, always) look for the psychological reason.  I am a social psychologist at heart and I tend to see why people act the way they do and communicate the way they choose.  As such, (unless they promote beheading) I give them far more time and chances than 90% of my fellow human brethren.  Don't get me wrong, I am not blind, but on occasion I look too deep.  Sometimes no matter how deep I look, the reality is, the person I was giving that 15th chance to is still a hopeless divvie. 

Some of us are not wired in to knowing when others are being emotional users, some of us need help.  Tonight I needed help.  I learned.  Learning can be tough, but it never disappoints.

Universal Change

I spent a good part of today on the phone or meeting in person with facilitators and spec ed teachers.  Thank ye Gawds for brilliant professionals who not only are good at their jobs but have a vocation to work with children.   The administrative aspect of school transfers is all but complete and all three wains know at least cognitively we will be moving in a few weeks.  What has taken me aback has been how I was anticipating this volcanic reaction from them and apart from a quick lava spike, they are suddenly full in....to the point I have to stop John and Hannah from trying to pack up their wee worlds before the weekend.

I am in constant awe of my children and their ability to morph and grow, but even more so after these last few days.  Of course there is so much more to come, the actual move, first days of a new school, first day on a new bus, first day in a new lunch room.  It makes me consider though how many firsts we all encounter, sometimes on a daily basis.  Firsts are scary of course; it's a sojourn off the precipice, a footprint into the unknown.  I will freely admit, I have moments of abject terror at the thought of this move, from suburban comfort of ownership into more condensed renterville.   Then I watch the innocence of my 8 year old dash about his room piling stuffed animals into an old cardboard box, giddy with the anticipation; I catch myself, slump to my knees beside him and giggle as we both squish in yet another  Build a Bear Puppy.

Changes are scary for sure, but they are also just that, change! I know for me this is the first step of many changes, some bigger than others, but all ok with the universe.  Afterall, the Universe has never let me down before, time to take that deep breath and let it do it's thing again.

Transitions galore

Transitions are rough on the most savvy and contained individual; add in being little and having limited social understanding and social cues.  Actually that sounds far worse than it really is, but both my lads will need a bit of extra TLC in the coming weeks.  We are moving...not far, about 20 minutes closer to Atlanta.  There is a multitude of reasons to explain why, if you want the nitty gritty feel free to message me.

Nothing has been said nor explained to the children for now.  I was waiting to get a new place sorted and the T's crossed and I's dotted. I wish I could.  They're not stupid and while I wait for my partner to catch up with the reality of the emotional aspect of this situation we have three wee kids who need answers.  I spent much of today trying to put myself in their heads, understand what this move (the beginning of a few) means.  I myself have moved over a dozen times the last 3 decades, but my wains have been happily solidified the last five. They thrive on structure and consistency and we are about to send them down the pin ball table like frigid marbles.

The next few weeks/months will be awful, liberating, irritating and real all at once.   I will be ok; I always am.  I hate not being able to protect and anticipate my kids needs. Parenting...one tough arse job!

Missing them....yet not!

I have been away from my babies almost 10 days now.  This is where I am supposed to tell you I miss them so much my heart aches.  Sorry, to disappoint; of course I miss them, but do I "miss" them???  As in, John William's composes a movie symphony just for me running in awkward slow motion down a sandy beach so I can gather all 3 in my arms and cry moist tears into their lovely crisp ironed polo shirts?  Look, no one (if they even fucking dare) would suggest I don't love my kids.  They are what has made me who I am today, tenacious, driven and plain mean/cuddly if I have to.

Still, would I relish another week or two child free, no demands, no snot, no poo, no carpools, no shit.  Are you thick or what?????  Of course I do; will I miss the flight Sunday, of course not!  I will resign myself to what I am responsibile for, and I will genuinely love having those wee boogers run into my arms (ok, 2 out of the 3, John will be pissed for 3 days...it's a rule).   Look, us Mums love our kids, no question, but when we know they're safe and ok, we do need that time away.  We need that time to remember who we are.  We need to remember who we are as a grown woman, to feel life as a woman, and not be defined by our stretch marks.

Run with the hare, chase with the foxes!

Run with the hare and chase with the foxes.  The last time I heard that saying I was probably a freckled faced child, running the neighbourhood and eavesdropping on the adult conversations around me.  All the while squirreling away biscuits and diluted orange.  Taking it all in by cultural osmosis and not really understanding what was meant.

Until it was turned around on me today.  Instinct was to balk, throw up blinkers, defend my position (whatever it was) and tell the world it was wrong.  I did at first of course...I was raging, wanted to throw back about 30 different retorts.  I started to and then took a step back and breathed, and if you know me at all you know that is unprecedented for me.  I don't step back!  No matter where right is sidled, I see red, I fire off and to hell with ramifications.

Let me reiterate...I DON'T step back!!!

No one has been able to tame that in me (bar my kids).  No man, no woman, no stranger on a bus with sage advice...no one.  Today, I stepped back; I breathed deep. I stopped being on the internet, watched a crappy yet brilliantly awful horror flick, put my neversleepsever lil un back to bed twice and sat.  I don't do that, I don't sit!

So, run with the hare, chase with the fox.  You know of course what it connotes, playing both sides of the coin, living two realities,  pleasing both sides.  Still having lived 19 formative years in one country, 3 in another and 13 in the next, I wonder if this is the legacy of the moving tenant.  It's certainly how I feel when I am willing to admit it.  Roots and hankering in one place, expected assimilation elsewhere.  When in Liverpool, UK I developed the most perfect scouse accent....to fit in.   Sort of yet not really.  Honestly it was so I could hail a cab and give an address without being thrust  awful, racist Paddy jokes or  being told, "won't drive Irish."  True story.

When I finally came to the US permanently in 1998, I did note those that had known me for years as a visitor suddenly expected different of me.  Comments that had been "cute" or ideas that were "quaint" were now considered dumb or unacceptable...I heard it from as young as a 10 year old "you're in America now, act like it!"

I tried so hard to fit in, assimilate I forgot basics, like pronunciation of similar words, stopped following the news at home in Ireland, my favourite sports teams.  I assimilated too hard, so to speak, hit the wall hard.  Still, I was not really accepted here in the US nor at home in Ireland when I visited on holiday (even now, I want to type vacation as well as holiday).  People here comment on my accent (still very muted), and in Ireland that I sound "like a yank."

Of course that is all periphery.  In reality the hare and the fox has a deeper meaning.  When one tries to assimilate, especially in a culture that doesn't just expect yet demands it,  it is easy to get lost in the smoke and mirrors...to please others; to make 'them' feel more comfortable.  Today I was called on that, on my complacence to put their feelings over my principals.  I'll be honest, it was a raw feeling and I would be lying if I said I am not still feeling a bit raw.  Nevertheless, it is a raw feeling worth sitting with.  So far, only one person has helped me do that, hate the cunt!

The Nana spell

I am blessed to have a wonderful Mum, who had me young.  As such we truly are best friends.  Having said that she is absolutely The Mammy as well; parent first, friend second.  It's a trip and a joy to watch her with her three grand children as let's face it, it's all she's getting.  I'm an only child and these tubes are about to be hung up for good in a couple of months. *whispers thankya baby Jesus over and over;)*

My Mum is a great traveller and makes a concerted effort to visit twice a year while I try to get home to Ireland with one kid once a year, when funds allow.  My children still do have all four grandparents  alive and kicking but with their paternal set a mere six hours away in waiting for God mode in central Florida, and as for my own father.....well, I have blogged about his own narcisisum ad nauseum.  My Mum, a mere 20 years my senior is the pulse of what these kids believe to be a grand parent.  Of course they love all their G-parents, but none of the four can capture their souls, imagination and pure total unconditional love as my Mum can.  I suspect because her connection to childhood flows and ribbons like a natural bend in the river; she eases into their world as flawlessly as sugar dissolves into warm water.  Each one so different in their wants and needs, yet she can meet them where they are, quietly, slotting into their psyche like a ball bearing in a weighted blanket.

The next ten days will bring immense pleasure and joy no doubt, but not just because of the delight in watching the generational stepping stones washed over by the river's swirling current, but because I can see clearly how my Mother and I forged our easy, fluid bond from so early on and what a gift I was bequeathed in how easy it has been to do so with my babies.  Nana's rock!!!!

Unfather's Day

Many of you know the cynical and dare I say it negative feelings I have towards fatherhood.  I don't mean to appear disparaging to those who have great relationships with their Dads or are married to men who are wonderful Dads.  My children are in fact blessed to have a good dad, who truly loves and cares for them.

Having said that I still feel somewhat alienated from this Father/child relationship.  Lots of factors come into play though; both Grandfathers were absent, alcoholic fathers.  From what I know it sounds like their own father's were similar, either due to WWI or just being neurologically impaired.  So, for me it is a multi generational issue and not merely a current one.  Parenting is a learned discipline.  I know society pressures us to become instant excellent parents from the moment the baby crowns, but let's face it it truly is a learn as you go occupation, heavily based in what we witnessed as a growing child.  Now, to me the latter doesn't matter if those parents were heterosexual, single, same sex etc, it's about what was witnessed in terms of a loving and nurturing home.

I however, and at the very minimum two generations before me did not have the luxury of such marvelous role models.  My incredible Mother and despite their flaws my Grandmothers did the best they could, thus yielding the best children they could.  Some did better than others emotionally, but all did the best they could, considering the odds.

I have a hard time with father's day.  Although not because I am bitter.  I have a hard time because I feel no deep connection to this relationship.  My own experience with an emotionally absentee Father for over a decade who suddenly decided he wanted in on this Daddy thing has been fraught with such raw and numb emotion.  It's honestly not a conscious act; I liken it to being born blind and when they fix the corneas at age 5 it's too late.  The brain has rewritten the synapses.  My emotional synapses are wired;  I make a conscious effort for the sake of my own children and their relationship with their Grandfather.  Even so, there's a lot of confusion and damage control.  Then I realize, not only am I missing that meaningful history with my father, but sadly he is missing the same with me.  So, no matter my feelings toward my partner (another post for another day), I am quite glad my children adore him and he is indeed a "good father."

Extreme parenting and contact parenting!

There is a modern myth that has been revolving through the parental blogs, magazines, articles and even play ground gossip the last generation.  Parenthood, once attained should, must and will define you.  Once one becomes a parent (no matter how it arrives) your world is complete, all is right with cosmic tumblers and we can all die happy in our beds, (obviously though that would be bad, because to orphan said child would be a felony or something).  In reality, parenting is the hardest, most exhausting, relentless job on the planet, and anyone who suggests it's a gift from the heavens needs a swift kick in the taco.  Children are mini people, they aren't neat bundles of fluff, collected in scrapbooks, complete with glitter, ribbon and embroidered cliches.

Now, ask me is parenting worth it?  HELL YEAH!  Don't get me wrong, not back tracking on my opening shocker of an anvil, just putting it in perspective is all.  If one is willing to fully open up one's personal vulnerabilities, children do so much to push us, needle us, cajole us and make us laugh at ourselves.  They create an environment where if we so choose, we can be freer than we've ever been, even more so than when we were kids ourselves, because we are seasoned, have lost that initial innocence and love to revel in it once more, if only for fleeting moments.

Now add to the mix, the needs of a child who needs that bit more than a typical one.  Add to that being afraid to allow your child to play in a Mc Donald's play place, or having to follow your child around Chucky Cheese heel to toe when he's 8 years old, for fear he will unleash his autism or adhd tendencies on your unsuspecting perfectly typical child.  Add to that the impulsive 4 year old that likes the smell of your lotion and asks to lick your arm (hey at least she asked).  Imagine, finding your son in the corner of a place that most kids are reveling in, on his hunkers, rocking back and forth, holding his ears and screaming everyone needs to be quiet now?  Imagine being the parent of those kids, tortured in an environment you and society says all children must enjoy?  Imagine parenting those children.  If you can't, you haven't extreme parented yet.  Join us, we have donuts!

Summer Lovin' 2011 style

Remember as a kid, summer meant bolting out of the house with toast still in hand, not returning until lunch and dashing out again straight after? Remember at 5 mins before 8, playing with your wind up watch, so it would "appear" to be slow??!! Remember, disgruntled parents standing at the front gate tutting you and swiping at your head for pretending your watch was slow?

What the hell happened in as little as a generation?

Now, I am expected to come outside, sit on a curb or a deck chair 'watching' my kids turning circles on their bikes and scooters in the cul de sac, listening to other parents chastise their off spring....for....being....kids?! What happened to scaling walls, hiking up trees, childhood independence? Suburban sprawl has created a monster..... fear of nothing.

Obviously there are everyday doh moments; yes a bike helmet does make sense, don't cycle to the main road, still don't talk to the weird shirtless dude who waves and holds out sweets and candy, but for the love of all that is childhood holy....let them be kids. Let them live and absorb and grow!

The Medication Quandry

I find it absolutely incredible the public and even professional debate that occurs when the concept of medication and kids' neurological issues comes in to play. One just doesn't hear the same rhetoric with any other organ in a child's body. Perhaps it's because the brain is such an enigma still, perhaps it's because the brain is what makes us all who we are; all I know is everyone and anyone appears to have an opinion on it.

This is my view, if your kid is neurologically healthy, intact, stable, happy, healthy then more power to you. However, if that same parent or adult chooses to judge another parent with a neurologically impacted child, well honestly, go and soak your head. I certainly wouldn't judge a parent of a child with diabetes and the med they go with to help their kid! In reality anything that is neurologically altering bothers the hell out of most normal folks, and so it should. It took several years, many more episodes and a broken acoustic guitar over a grown man's back to get us to go that route.

It saved my son's life.

When your 4 year old announces he can fly and opens the car door at 65 mph on the highway come back and judge.

Today I have a happy, healthy, hormonal (in a NORMAL way) funny, creative 11 year old. You want to judge our choices? Still soaking that head, bloody hope so!!!!???

Aspergers! The good, the bad and the ugly!

If you have met one kid with autism, then you have met one kid. A good friend said that once. Never a truer word was spoken. Think about it like other neurological disorders, like Cerebral Palsy. With all "spectrum" disorders you can have anything from someone who's so high functioning you have to cock your head, squint with your left eye and stand on your head to see it. Then you see the highly impacted child or individual and it's like a wet fish across the face. You know, the types you either stare at with your jaw dragging on the ground or you are deliberately ignoring, while at the same time feeling relieved and guilty. Yes, so do I, even still, after 11 years of dealing with high functioning autism and a couple of co morbid disorders that tack themselves on for shits and giggles.

I have three spectrum kiddos, all like stepping stones from most impacted to least impacted. They have similarities for sure, but more importantly they are so unique and different. Think of it like one of those venn diagrams you despised in Math class in or in Language Arts. Three circles that intersect in the middle. The majority of the circle is each individual, with bits that overlap with their siblings, both individually or as a trifecta. Aspergers syndrome is a neurological disorder (NO, it's not a bloody disease, you can't catch it and trust me, chemo doesn't help). having said that, yes many of those on the ASD (Autism Spectrum Disorder) spectrum do benefit from other interventions, like therapy, dietary change, supplements or prescription medications.

I have two who need meds and all three benefit from supplements and other holistic intervention, such as chiropractic care. The first that tells me chiropractors are quacks, come see what my oldest is like after a specific adjustment. Night and bloody day!!!! Rainman is an anomaly, which is why it became a movie. They never make movies about the mundane or the day to day slog of dealing with social needs or neurological disorders, hell, that would be far too real and down right depressing...where's the uplifting "Awe' feeling in that? True, people on the higher end of the spectrum are hyperfocused on one or a few special interests. True, they often struggle with eye contact, although I will stipulate not all. I have one eye flitter, one "don't feckin' look at me" and one "let me stare you out of it." I have two sensory seekers, who bounce, swing, body slam all day (if allowed), and one who won't notice if he has lost a limb, but a splinter involves the jaws of life.

They ALL struggle with voice volume and pitch, and intense patience and great speech therapy has helped with that, and all have struggled with fine and gross motor delays (ie: the 11 year old is only now learning to ride a bike with training wheels). However, they all have an incredible sense of humour, an inbred need to please (pre and post meltdowns;). They are uniquely their own little person, and I wouldn't have it any other way.....well ok, some days, but for the most part...nah! Love me my Aspies!

The Grandfather Factor

I'm not sure if many are aware when reading my blog, but I am not a US citizen.  I was raised in Ireland with a college stint in England.  Living here in the US with three decidedly American children I am afforded an interesting perspective on both parenting, special needs parenting and mixing cultures in general.

Obviously, grandparents play a unique role in the life of the child, regardless of ability, even more so when that grandparent is from another country.  This week my father is visiting from Ireland.  He is by no means the classic epitome of stereotypical grandfather.  He is a relatively young grandparent, not yet 60, and my children will be his only grand kids as I am his only child.  He loves them of course in his own way, but he is as clueless today about the peculiarities of childhood and childhood things as he was when I was a girl.  Add into the mix three very different kids with three very different, singular needs.  It's taken a good decade for him to finally understand these children are indeed not typical and about as long to realize he is Poppa and not merely Frank.

Having said all that, having this extra generation under the roof, infringing on our already precarious routine and day to day stepping stone existence is both unnerving and frustrating.  Unlike my Mother who slots herself into our lives effortlessly, pitching in where necessary and happily riding along with the flotsam and jetsam of our goings on, my father is more stagnant, expectant, rigid.  He needs as much interaction and entertaining as the kids do.  While I am glad to see the bond grow between Jacob, Cormac and Hannah and their youthful Grandfather, by the same token I find myself irritated by his inability to notice when a friendly tease can turn treacherous or when he brushes off a meltdown as nothing when his actions or in-actions caused it.

It is so easy to fall into old grumblings and honestly, unrealistic expectations for him and who I need him to be in my and my three darlings' lives.  This trip though, I catch myself; who am I to draw what his relationship needs to be between he and Jake, Cormac and Hannah?  In that regard all I can do is nudge them all gently towards each other, step back, observe and wait.  This is their journey, all four of them.  I am but the facilitator and gentle guide.

The 3rd piece

I have always said I have three special kiddos, but never had an official nod to my youngest.  I remember wondering why she would only sleep with me, refused any bottle and ended up nursing until she was 3. Yes, you may now scrape you jaw up from the floor.  When one is an at home Mum and your kid will only calm, settle or soothe to the boob, it becomes less of an object and more of a life buoy;)

I was worried enough about this that I had Hannah assessed by Early Intervention when she was a toddler, no red flags at the time.  As time moved on though, it became obvious I was right and the powers that be were wrong; hmmm, now when did that happen before, oh yes, with Jacob.  Last October I'd had it and officially requested an educational evaluation from preschool services.  What ensued was a litany of vague offers, delays, blatant disregard for IDEA and an ignorant assumption by the special ed department that I am thick as two short planks and do not know mine or my child's rights.  IDEA (Individuals with disabilities education act) states the district has 60 calendar days to get us to the point of an assessment.  Legally Hannah should have been in an assessment no later than New Years.  We were given a date in early January; fair enough, it was close enough.  Then the worst thing that could ever occur in the great state of Georgia happened....we got 2 inches of snow.

Snowpocalypse, the great blizzard of 2011 shut down everything.  It was the day after tomorrow.  The entire state was paralyzed as we all sat perched on the edge of our sofas, glued to the 24 hour weather reports with images of horrific attempts at miniature, miserable looking snow midgets, 3 car fender benders and worst of all....we ran out of road salt.  It was truly terrifying.  OK, I jest, but in the south 2 inches is what 3 feet is in Maine.  Hannah's appointment was rescheduled for mid February.  Well past 60 days.  By now I was more than tutting and gritting my teeth a bit.  OK, yes I was a swearing, pissed off pacing bitch from hell.

That appointment actually took place and it went well, the educators and psychologist were professional and I could tell they were stressed with the back log they had, no doubt due to severe budget cuts made earlier in the year.  Then the shoe didn't just drop, it was a steel toed boot that kicked me in the head.  They stated the 60 days now started from the time we agreed to the assessment, ie: mid February.  It was near impossible to not channel my inner Vader and want to smite this woman with a single thought but you will be relieved I spared her....for now.

Here we are, mid April and we finally received Hannah's results.

I would be lying if I didn't admit that seeing what you already know in black and white isn't a bit devastating.  Her scores indicate a severe sensory seeking, hyperactive on the move, clumsy, low toned 4 year old who still has adaptive delays.  She can't use the potty as her muscle tone is so low she has no sensation.  I have been changing diapers for over 11 years, and yes I am totally over it.  Our eligibility meeting is next week and I've been assured she qualifies, will get an IEP (Individual Education Plan), she will be placed in a preschool to meet her needs, get occupational therapy, picture schedule, perhaps even speech.  Sounds rotten doesn't it.  Know what she's doing now?  Watching cartoons, laughing at Phineas and Ferb and she out of the blue while I was writing this said "Mammy...I love you!"  Yup, we'll be just fine.

Poop...it IS all that!

So my youngest, Hannah is 4, and can't potty train...not won't, but can't.  Not much different from the boys except she merely flirts ever so subtly with the autism spectrum.  In fact, if you ever get a chance to view a documentary call Autistic Like :Graham's Story, that's a lot like Hannah.  She has "issues".  Ah, hell, don't we all.  10 years ago her needs would never have been met and she would have been berated, put down and frowned upon.

Hannah's diagnoses is Sensory Processing Disorder, or SPD, along with low muscle tone and fine gross motor delays.  All of which affects her entire sensory system as well as her adaptive abilities.  Don't get me wrong she is her Mother's daughter and is about as willful as a food addict in Dunkin' Donuts, but honestly that has nothing to do with her adaptive needs and central nervous system.

Central nervous system...yup, let me explain.  Our central nervous system affects all our sensory abilities and reactions.  It feeds into the way we visually see things (too bright, too dark), hear things (too loud, too low) and even how we react to pain and physical feeling.  For many children with SPD if they are "hypersensitive" many every day noises and sights cause physical pain.  I still have to warn or cover my children's ears if I know a toilet is about to flush too loud.  If "hyposensitive" they are under reactive to pain.  I have two that will run in to walls and not complain but act like a hangnail is the apocalypse.

The kicker is though most children (and adults, but I will get to that in another post), are not all hypersensitive or hyposensitive. A lot of SPD cases take a little from the hypo and a little from the hyper.  An example, I took Jacob at age 16 months to a fire works display.  Remember, he was my first and what the hell did I know was typical toddler behavior;)  The minute the explosions began he literally passed out in the back pack carrier.  The noise was deafening, I even covered my own ears a few times, but Jacob snored throughout.  It wasn't until I was walking us back to the car and a motorcycle revved it's engines, screaming past did the wee lad jerk awake, screaming like he'd been stabbed in the head with an icepick.  It took almost two hours to settle him.  That as my first "aha" moment.

So back to Hannah.  She attends Occupational Therapy weekly and I just finally learned she qualifies for special education preschool.  Her gastroenterologist confirmed her inability to feel the sensations that tell her she needs to use the bathroom is due to low muscle tone and as such hard stool embedded in her colon...yeas...feel free to barf......NOW;)  Until she clears that stool, her muscles are effectively paralyzed and Miralax is our constant companion.  We went through an identical situation with Cormac, but somedays it would be nice to have all the wee muckers out of nappies (diapers).  Face it peeps, I've been wiping shite for 11 years.......roll on miralax session number 3 and proper early intervention.

Hair.....down there!

The joys of bipolar disorder as one of several neuroloical disorders also brings with it the "joys" of being a micro manager.  Every time your child has an emotional hiccup, you are left wondering, (a) was this bp, (b) was this his meds need tweaking, (c) he's being 10, (d) his hormones are kicking in.    For the most part Jacob's issues are Adhd, (heavy on the H) related.  His bipolar has been well contained the last 2 years.  He does well on the med he's on for adhd, that is until it wears off....between 4 and 8pm.  Basically 4-8pm are ...ahem, rough.  I also have a prescription for an afternoon dose, but in general it just makes him an insomniac.  I don't recommend it, so I ride out the hyperactive, silly, screaming Jake.

So, here we are.  Jake will be 11 in March and today he announced (both visually and verbally) he has hair down there.  Yes, my jaw smashed to the floor and I had one of those time lapse flash backs over the last decade.  With a typical boy there are ways to deal with this.  It still may be awkward and difficult, but with a boy who is chronologically 10 and emotionally 6, well, let the social stories commence.   Personally, I would rather drink turpentine!

My Melting Pot

In the land of ASD the one eyed man is King....no wait, I mean the meltdown holdeth ye hostage!  Meltdown....such a nice label, it almost conjures up images of a simmering sauce bubbling gently over a low ring.  Right about now anyone who has witnessed what us Mom's and guardians of our kids call a "meltdown" are wetting their knickers and rolling around on the floor in hysterics.  It's less a simmering of gentle pops and more a glooping, slopping, spitting, gaseous geyser about to erupt.

When you see the signs of an impending melt down your options are slim, you have to if you can (a) figure out the cause of it, (sensory, overwhelmed, frustration, pain etc) and (b) determine if the situation needs distraction, ignoring or removal, (the latter not so easy with a 100lb 10 year old).

Now all of the above will have to be dealt with differently depending on the location.  It's not so easy to deal with a melt down in public versus the comfort of your own home.  I have been known to leave entire cartloads of groceries at the checkout, mumble apologies to the acne ridden cashier whose jaw is scraping the floor and pushing passed the blue rinsed old biddy who is tutting and insisting a week with her will "sort him out."  After several of these experiences I developed a skin that can only be described as Teflon; The Thing has nothing on this Momma.  I think the best comeback I've heard when "good meaning" strangers (AKA invasive old farts or IOF's), "he has autism...what's your excuse!"  Later on I learned to carry little cards that explained what they were witnessing was not a brat who needs discipline, but a child with autism.  It's shut up a few IOF's in my time ;D

Each of my mini trifecta have meltdowns; as Jacob is close to his 11th birthday I can read his on coming fits in a nanosecond, reason and yes on occasion dangling the odd carrot or threat does enough.  Cormac melts down rarely, but when he does shields are at maximum and there may be a needle jump on the seismic scale at the local weather station.  Hannah however is currently developing a lovely penchant for transition melt downs.  Coming in from outside, getting changed, going to the dinner table, leaving the dinner table, getting dressed, getting undressed, getting in the car seat, getting out of the car seat, brushing teeth and lately she's been quite annoyed that she can not control involuntary reflexes like breathing, blinking and yawning.

There is a point of no return with her that means you have to let her scream and rant it out.  I know with patience, the above interventions and time this too as a dear friend commented "shall pass like a kidney stone, but it shall pass."  After all, I had been told by "professionals" that no doubt Jacob would be in a boys home or worse at his current age when he was not much older than Hannah; not the well adjusted, quirky, funny, straight A kiddo he is today.

In the meantime, I think I shall invest in a lot of spackle, sandpaper and paint to cover up the evidence.  You never know when Old Faithful might have to breathe;)

Bureaucracy...Bah-Humbug

Monday, December 27, 2010

We happen to live in one of those incredibly rare states that makes allowances for Medicaid and some Social Security Benefits for those meeting certain disability criteria. 

In some states it's known as The Deeming Waiver, while others still call it The Katie Beckett waiver.  This is the best link I can find so far on what each state offers, if anything.

http://www.cms.gov/MedicaidStWaivProgDemoPGI/08_WavMap.asp

Essentially, we can apply for medicaid benefits on behalf of our disabled child for certain diagnoses as a secondary provider.  Sounds fabulous doesn't it?  Um....this is a government sponsored program....in the US, and administered by a few states; fabulous it may be, attainable however??  Well, you get the idea.

I have two kids who "should" benefit from the state Medicaid program, but after the hoops, various bureaucratic rings of fire, a permanent sense of carpel tunnel in my writing hand, two technical denials and two reviews, so far I managed to get one of my boys medicaid as a secondary insurance.  That was however until I became comfortable with the entire set up.  Note to any and all parents, guardians, guardian ad litem and advocates, never, EVER become comfortable with any system that asks you to fill out four trees worth of paperwork before you can even apply.  Actually, just don't become comfortable with government bureaucracy in general.  Once you do, you will have the week I'm about to have.

So, here I was all smug and chuffed with my clever self, that two years on we had managed to hold onto this wonderos situation of medicaid for my oldest.  Last year's annual review came and went without so much as an echoing hiccup. This yearly review came around and I cheerfully collected all I needed, killed another four acres of the Amazon in the process and handed everything into Department of Family and Children, (the starting point in the red ribbon highway).

Two weeks later the certified mail began to arrive....first technical denial for non presence of paperwork and application on time.  Final technical denial for the same reason.  Now, you have to understand in this state it starts at DFACS and somehow, mysteriously (I suspect they use flying monkeys) finds it's way to a nurse's desk in a grey building surround by grey walls, no doubt with grey hair and a dull grey palor, at least that's how I choose to see her, Nurse Grey.  Wielder of the oversized grey quill that based on nothing more than an un dotted i or an uncrossed t, scratches "Technical Denial!" across a giant piece of stained parchment, and then she peers into the camera and cackles wildly while throwing her head back in hysterics.  What, a little too much hyperbole?

So, a mere two days post Christmas I have been catapulted from my cosy, rose tinted world of smugness and will spend a good portion of the week camping out in DFACS in the hope I can get a hold of my son's social worker, whom by the way we have never met.   In fact expecting her to return a phone call really would get one committed if uttered aloud in DFACS' lobby.  At least a 72 hour hold anyway.

Now where did I put that chainsaw? I have a few dozen trees to fell, I'll be needing the paper.