The Meh and the heartbreak

I hear "My Heart breaks,"...."doesn't it break your heat." Even from those that have plenty enough to bear heartbreak wise. If it's not your child though, that heartbreak seems warranted, even accepted. I have read and followed many an article and thread and it seems "My heart breaks" leads the view. I can only speak from personal experience, my heart doesn't break. It just doesn't, my emotions are pulled, like a tug boat against it's will. You know you should but you don't want to, in fact beneath it all you're irritated you are asked an emotion at all. This is America where American emotion's are worn, expressed and thrown like confetti. Our real emotion, well, we don't know. We have been lead and drawn to convey and spread out emotion like a thin quilt.We cleave to theater to help us express said feelings: Golden Globe's, Oscars's. Oh trust me, I am as much to blame, I cleave the play, the distraction. I read a tweet tonight that said their "heart broke",while watching a recipient's acceptance speech. It reminded me,all the times I see similar tweets for stories about people, kids and adults how their "hearts broke," for an illness,a death,a child with cancer, that child's death from cancer, a celebrity's death. I have lived heart ache from a few seconds after Jacob was born. Not lack of love,not lack of longing but a heart ache. A knowing something didn't fit. The professional's around me knew as well. They shared the heart ache. Periodically we cried together. I lived that heart ache until he was medically diagnosed as Bipolar and Autistic. Then my heart broke. When your heart breaks it's the ache you've been carrying, it slows down, rests and stops. It's quite peaceful really. Seven years later I still carry it,although it's not an ache or a break. It's a hike. Don't laugh, that is what Autism and Pediatric Bipolar is, it's a hike. You slog, someday's you keep the head down and trudge on, someday's it's head's up and uphill and looking around. Many day's is head forward,no movement,forward,the blinker and both side's of his face, keeping him forward, his wide guide. Because those days you are his guild, compass and counselor. So,when I hear "My heart break's, my heart aches...."I think, really, my heart goes meh. I couldn't survive breaking and aching. Meh means I can aide him,all of them, and me. My heart goes meh, a lot, but it's my meh.

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.

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.

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.

  

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.

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.

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!