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.