What's Up?

"And so I cry sometimes
When I'm lying in bed
Just to get it all out
What's in my head
And I am feeling a little peculiar
And so I wake in the morning
And I step outside
And I take a deep breath and I get real high
And I scream at the top of my lungs
What's going on?"
--What's Up?, 4 Non Blondes

I feel like shit.

I've probably listened to The Wall eleventy-teen times this week.   That's usually not a good sign.

In the echoes of the back of my mind, where my critics, both real and subconscious live, there is a little (metaphorical) voice saying "Why wouldn't you be?  Look at your life."

I know.

I work too much, I sleep too little.  I am the sole breadwinner for Team Logan.  I spend my one life, working both days and nights where I wade through the depression, psychosis, mania and addictions of a populace.  I then come home to my other life, my three kids who deserve healthy, happy parents, a clean house and all the attention we can give them, instead of a Mom who just wants to flop on the couch, drink Jack Daniels and play Skyrim.

For the record, I love what I do.  I love my kids, my house, the life that I have built for myself and the people in it.

But.

I.  Feel.  Like.  Shit.

As I looked around bewildered one day through some unprovoked tears, I had to sit down and take a hard look at what has happened in the last year.  I spent several months off and on, in a great deal of pain in the bathroom.  After all the tests, after all the procedures, we still don't know what that was... other than it seems to have subsided in the last month. We still haven't hit the one year anniversary of Wyatt's surgery;  although he is doing very well, that experience still haunts a bit.  Work, school, Christmas, money, family, life... When you break it down along the five axes like we would with anyone else, yeah...  I've got a lot on my plate, man.

Not to put a fine point on it, but right now, my coping mechanisms aren't working too well.  Everybody has them, it is just a matter of whether they are constructive or destructive and how well they work overall.  Coping strategies that are negative for you are pretty self evident:  things like alcohol, cutting, drugs, any behaviour that is excessive and interferes with the normal functioning of your life.  The positive ones are not as fun or have the instant gratification as the other, but have longer lasting effects.  Things like distraction, visualization, exercise, going for a walk, playing an instrument, doing a craft, doing a hobby.  The other addendum to that is that when your coping starts to fail, you really don't feel like doing any of the positive ones any more. 

This blows.  Goats for quarters, even.

Some might readily point to my second born, the one with Down syndrome.  If one were to believe the grief rhetoric that parents have been force fed since... well, forever, his existence is reason alone for me to feel this tired and burned out.  Hell, if I really wanted to, I could blame any sort of thing that I did or felt on his "brokenness".  Don't forget I was warned by professionals that having a child with a disability would break up my marriage.

Um, no.

I'm going to take yet another teaching moment (gah!) and state that I refuse to spin this the other way,  to say that he is my, rock, my salvation with a magical chromosome.  I will say that all my kids, all three of them are the reason that I do anything;  from getting up in the morning to working extra hours to not sleeping, ever.  The idea that one person can cause another's depression is laughable at best and very misleading at worst.  Ultimately, like everything else in life, it all boils down to coping.  How well, when, how in particular and how much in charge you are willing to be of it.  This is not a will yourself out of a rut through the magic of bootstraps thing any more than it is madness, an unspeakable horror lingering just out of sight in the shadows.  It just is.

As a rule, I've given up most of my vices other than the occasional drink (or three) now and again and my Coca-Cola and my coffee.  Oh dear god the coffee.  Music has always been my drug of choice and I utilize it whenever I can.   My sense of humour is also so dark that it's difficult to see most days, but it gets me through.

As I tell my patients, if it's not working, do something else.  I have basically gone from work to home to work and with the exception of a brief trip at Christmas, did not go out at all for months, except for a handful of trips to the grocery store.  It's also minus a million outside and even if I do manage to see daylight ever, it is probably snowing.  So, to offset, I took a little day trip with some girlfriends last week.  At least for a little while, I found a piece of heaven.

But, one afternoon out of 365 is not enough.

If it's not working, do something else.

We frequently re-assess how things are done in Team Logan.  It's time to, once again.  As we do not have a lot of social supports around us and not a lot of opportunity for things like nights off and "date nights" (or hell, "uninterrupted meaningful conversation"), we jumped at a proposal made by Wyatt's worker.  She found a new program through Tourism Toronto that gave parents of children with disabilities a weekend of respite.  Called "Relax, Recharge and Renew", the program utilizes many of the major attractions and hotels in Toronto and creates a weekend away for parents/parents and siblings of the person with special needs.  At first, I was horrified.  However, the more I thought about it, the more I realized, yeah, I do need some respite... 

...From my life, period. 

I do really need a break, from being a parent, as parenting all my kids (like parenting any kids), is hard.  Listening to, assessing and the assisting with the anguish of strangers is hard.  Maintaining a safe environment while still maintaining the privacy and respecting the humanity of a patient is hard.  Dealing with the systemic failures, interdepartmental issues and bullying in a regional hospital is hard.  Dealing with social isolation, dealing with a personality that is very much introverted (believe it or not) most of the time, is hard.  Writing this blog and being involved in the advocacy projects I am in is hard.  Living the double life that my job life and family life are and maintaining some semblance of balance?  Hard.

This weekend is Team Logan's weekend.  From when the car service picks us up Friday afternoon, to when it deposits us back home again on Sunday, we will be hopefully be relaxing, renewing and recharging.  And reflecting and re-evaluating.  And hopefully putting some new plans in place.

To quote Spider-man (or "Spider Ma'am if you happen to be my daughter):  "with great power comes great responsibility".  I lack spiffy powers, but I do have responsibilities--to my employer, my patients, my co-workers and my family and friends--to stay on the top of my game.  I'm not at the moment.  I recognize that and it's time to do something about it. 

I'm hoping this weekend will at least be enough of an interrupt to allow us to make some changes, to allow whatever it is that is chewing my tail to fuck off.  Hell, I'd be cool with 6 hours of uninterrupted sleep, some decent tunes and a good meal.   This weekend appears to be all that and a bottle of wine.  (I'd say chips there but I've eaten far too many of those lately.)

Relaxing, renewing, recharging, re-evaluating.  Yeah.  Sounds just like what I'd recommend.  Life can really grind you down from time to time, even if you are one of the ones that you'd least expect or are well versed or considered the 'strongest' or most brave or some other silly thing.  Lets face it;  there will always be more snow, more bills, more stress, more sleeplessness, more coffee jitters, more trolls, more physical pain, more anguish, more, more, more...  Life is like that.  

Sometimes building a fort isn't enough.  Sometimes you need to step outside, take a deep breath and get some perspective.  

...So I can get back to doing what I love.  

(That may involve coffee and Skyrim too, but you get the point.)

Welcome to The T-21 Blog Hop! January 2014 - Architects of Change

Today is the first T-21 Blog Hop for 2014.

As I was looking over Hops of years past, I was considering where to go next.  That got me thinking...

So much of what is perpetuated about disability, both inside and outside various communities continues to be based on supposition, prejudice and ultimately, stereotypes. As it turns out, we are still not "all in this together". From the grief rhetoric to inspiration porn to privilege to (not so) quietly painting those that you claim to represent as burdens, forever children or worse, these forms of ableism, are just as rampant as any other.

They all hurt; and they will continue to do so until change comes about.

Speak up about it? You must be angry/mentally ill/bitter/not accepting of "your lot in life" (whatever that means) or even a bully.  I get a lot of mail or comments like this;  many outspoken advocates do. I am in some very good company with that one.

Instead of allowing the message to be diluted, instead of taking the easy road and pretending that certain things just don't exist or coating them in fairy dust, I'm going to embrace the angry.  2014, for me, is going to be louder.  Possibly both leaner and meaner, but definitely louder.  With that in mind, this month's blog hop theme will reflect social justice. It will be for calling out, for demanding, for saying "we are not going to be silent". Call it solidarity for the angry. Call it whatever you wish.  We'll call it "architects of change".

Acceptance, fairness, equality: these things are not to be taken lightly. We are not all on the same journey. Some of us have taken different roads; it is at our common intersections that we will now meet.

For three days, add your posts, both old and new. Let's set the tone for a year of change.

Balls

I looked at the calendar on the way by this morning and realized it was January 13th.

Holy cats, we're almost midway through January.

How in the blue heck did that happen, I asked myself as I fumbled with the Tassimo.  Between the weather and work and the general carry on... well, it's been pretty much business as usual, hasn't it?

If by that you mean completely all over the place, then yeah.  Sure.

The week before Christmas hit us with an ice storm that downed many of the trees in my city, as well as leaving people without power for days.  In fact, there were places in Toronto that were out of power for up to nine days, making it a very cold and dark holiday for a lot of people.  Having several inches of ice everywhere ensured that I fell at least once a day.  During the middle of the ice storm, I had to walk (run!) through ice coated fallen trees for a block to make it to the next bus stop as my connection point was closed off by police.  I got my cardio in that night as heavy limbs cracked with the sudden violence of a gunshot before smashing to the ground like crystal chandeliers.  At one point it sounded like an enormous monster was after me.  Pop, crash... pop, crash... I was too busy moving to look back (and praying that there was no downed wires in the jungle I was climbing over).  That's an experience that I would not want to relieve anytime soon.  I don't scare easily, but I was still shaking an hour into my shift.

My 'hood.  Photos courtesy of L. Bonner. 
(Photo Description:  Three photographs depicting the destruction of trees by ice.  Thick limbs  are broken and hanging, trees are bowed under the weight of several inches of ice)
We were fortunate to be traveling this Christmas and able to escape the destruction for a few days. While we were gone more ice came and brought some wind along.  As you can imagine, when we returned things looked much worse.  Many of these trees that you see above are no longer standing.  The branches have been moved off the sidewalk in *most* cases, but there are still places where the sidewalk is blocked with branches that are now frozen solid to the ground.  Again, we got off lucky as none of us in our area had a tree fall on their house, or car, or themselves.  We also have underground power in our area, so other than a few brief 20 minute spurts, we had light and heat.

Once the ice not-so-follies were over and the traces finally melted, the snow started to fly again.  We got several snow dumps, including one Boxing Day when we were traveling home.  We all started to get a little punchy about the weather and with everyone home, cabin fever set in really easy.  Then, we hit the deep freeze.

Winter is no longer coming.  Winter is here, yo.

(Photo Description:  Plastic Hallowe'en skeleton completely
 and creepily coated in ice)

After a few days of that,  I started to feel like I was desiccating, that slowly but surely my lips were pulling back from my teeth and soon I would look like one of those cave mummies that people find from time to time.  I felt like a dried out husk with a red mane of crispy clown hair as I put on my "Darth Mom" coat, Gore-Tex boots, thermal leather mittens and wound a scarf around my neck (and promptly buried my nose in it) before embarking out into Hoth in the hopes of making it to work on time.   I stood out for at least half an hour daily in temperatures and wind that would freeze bare skin in 5 minutes.  At one point it was minus forty Celsius, which is... minus forty Fahrenheit, oddly enough.  Everybody can agree then, it was ridiculously cold.  I danced in bus shelters to keep warm and one night had so much fun imitating Tauntauns while the Admiral and I waited for the Whaaambulance, that I actually hurt my throat.

Your Tauntaun will freeze before you hit the first marker.

(Photo Description:  scene from Star Wars:  The Empire strikes back depicting
characters Han Solo and Luke Skywalker on a tauntaun.  All are covered in snow.
 Image caption reads "Going to the store.  Need anything?")

Eldest did not return to school after Christmas break until Wednesday... until it warmed up into the minus twenties (!) and we weren't having a blizzard.  The younger two only went outside in a preheated van. Twice.  After several weeks of non-stop winter weather shenanigans, you can imagine that we were all more than a little wonky.  Work was not much better as the volumes and the acuity are astonishingly high.  Having left on our trip immediately after my shift before Christmas and returning to work immediately after our return, our schedule has not allowed for much down time. 

To make what is rapidly turning into a very long story, short:  I'm pooped.  With a capital "Poop".

I've done precious little over the last few days other than play a lot of video games, have the kids crawl over me and stare at one size screen or another. 

Without falling into self-pity, it is hard doing what I do... whether at work or home.  My kids are the easy part, the hard parts are the advocacy bits.  This blog always has and always will be a labour of love;  it's hardly a money making venture and I'm not in this for the book deal or to launch my "writing career".  I already have a career, one I love very much (even when it's trying to kill me), but I must confess, I enjoy doing this thing too.  Most of the time.

I'm just not feelin' it right now.  At.  All.

It could be the haters--there always seems to be a few of them lurking about, always ready to launch into a personal attack when my views/religion/political leanings/country of origin/general outlook on life clash with theirs.  It's hard to take sometimes when some of the worst other-ing comes from within your own "community". 

But, if you look at things objectively, this past year has been one of metamorphosis.  By comparison, in 2011 I wrote about choosing to surge forward through what seemed like a never ending sea of negativity.  In 2012 I encouraged compassion and hope. 2013, by contrast, was about change.  On a personal level, I managed to kick some lingering (and previously invisible to me) prejudices to the curb, realize the privileges I did have, and truly start moving forward into the land of acceptance. It sounds so easy and almost trite when I write that, but it is not easy to stop and recognize that even in your "do no harm" philosophy, you still manage to do just that, no matter how caring your intentions.  Those of us in patient care often think we know best... because we have to.  How else does one perform some of the things that we do without a heavy dose of self-assurance?  You can't.  The danger, however, lies in overconfidence and paternalism... where one decides they "know best" for an adult who is capable, both legally and in actuality, of making their own decisions.  Understanding how deep the rhetoric goes--how our very language is both shaped by our underlying fear and lack of knowledge--and how these states are perpetuated by it, was a big realization for me.  One I can't trivialize with an "Ah-ha".

There have been so many changes globally too.  We have learned how one voice can quickly become many as retailers, publishers and manufactures learned that language that disparages those with intellectual disabilities is not acceptable and will not be tolerated.  We saw a ground breaking case where a woman with Down syndrome, fought for, and won, the right to live where she chose to... a right that so many of us take for granted all the time.  At the same time however, it's been almost a year since the death of Ethan Saylor.  During that time, we have been reminded many times of the still pervasive view of people needing to be "controlled" and how little society still knows, or cares about those with intellectual disabilities.

As a family, we've seen some changes of our own.  In April, Wyatt underwent open heart surgery to repair his AVSD.   Since that time he has had to relearn many things.  He has added many new skills to his repertoire since then, including recently starting to walk with a push cart (or my computer chair), climbing up on everything in sight and a handful more signs that he is using consistently to engage us.  Like everything else, these were all discovered by accident:  I walked into the living room one evening to find him sitting in the middle of the coffee table watching TV.   At my gasp of surprise, he just looked over and gave me the chin lift, as if to say "Sup?" and went back to his show.  All righty, then...

I've had my own health problems this year, we've gone through some bullying with Quinn.  Money waxes and wanes, as do colds and bugs and shifts and mess.  Just like any other family.  That is how life goes.  Change is hard, as they say.  It is also exhausting and as messy as anything else. 

We were cleaning out eldest's backpack the other day, a task that included the discovery of what we can only assume was once half a sandwich, abandoned in the frenzy of the last day of school.  After having a brief discourse with this now rapidly evolving life form, we found a newsletter advising parents that kindergarten registration for children born in 2010 would commence in February.  Sean and I looked at each other in awe as that will be us, next year.  In one year we will be entering the IEP arena, my fears for our District School Board only bolstered by recent experiences by a few families that I know (and a lot of patient families that I have come into contact with).  My children are babies no longer.  In a short time they will all be going to school and a whole new level of advocacy will be added to our world.  There will be tears, sure.  There will be anticipation and angst and more watchful waiting.  There will also be new experience, joy and a whole lot of freedom for all of us. 

Life will continue to happen here, both good and bad.  The bad does not negate the good and the joyful does not erase what is horrible in the world.  In reality, I do not have the luxury to live in a climate where it is 72 degrees every day.  I, being me, do not have the exorbitance to do anything except being in the here and now.  Being present, bearing witness, to both very good and some very, very bad things (that some people wish I would not talk about) and challenging the way society views those that are "different" is who and what I am.  As a mother, as a nurse, as a human being, I wish I could, as one blogger put it, "stick my fingers in my ears and say "la la la la, I can't hear you", and pick and choose what I see.  I wish I could pretend that my kids were superheroes or that Wyatt's extra chromosome is made solely of "♥♥♥ love ♥♥♥" or that the only disability in this house is my "angry" attitude. But, I can't.  Further to that, I won't. 

Instead, I live where there are two distinct seasons:  winter and construction.  I live in a world where I've got three human kids, not just the one with the interesting condition or two if you count his neurotypical twin.  I don't get to bury my head in the sand or "cope" by churning out inspiration porn and succumbing to the grief narrative.  The society I live in is skewed against people like my kids, where our views of healthy and fit and appropriate don't deviate much from the eugenics dogma of yesteryear.  That has to change.  Disability is a natural state of being.  Neurodiversity and privilege are more than just theories. They are reality.

This year will bring it's own tastes and flavours.  There is, and will be, much joy.  And angst.  And potty training twins with different parts.  And itchy feet and boogers and period cramps and lack of sleep and worrying about the driveway and the lawn and so much coffee.  And love.  And coffee.   Once I rest up a bit, you can bet that there will be a lot of action here and in the other places that I hang out, regardless of what weather the skeleton happens to be wearing at the time.

Doing what I do, living the life that we lead... I think I finally have an answer to "I don't know how you do it."  The answer is the same as to how one lives through the Canadian winter. 

The answer is "well" and with a giant pair of these:

(Photo description:  two snowballs)

In the News - December 2013

A collection of news articles, blogs, stories and information about Down syndrome, disability and special needs, from Down Wit Dat's Facebook page. These are the last from 2013.

This month, in order to capture as much of the information as possible, I've included a "PRESS" category to showcase press releases.

Legend:

AUDIO	indicates an audio clip
APPEAL	indicates an online petition or plea
BLOG	indicates a blog post
CASE	indicates a lawsuit or proceedings
EVENT	indicates a scheduled event
IMAGE	indicates a graphic or image
LAWS	indicates a new piece of legislation
LINKS	indicates links or resource materials
PHOTOS	indicates photos
POLL	indicates an online survey
POST	indicates an advocacy statement made through social media
PRESS	***NEW!  indicates a press release
STUDY	indicates a study or discovery
THREAD	indicates an online discussion thread
VIDEO	indicates a video or movie

BLOG	Hoist the Colours!
VIDEO	Disability Politics and Policy
POST	"What would a truly inclusive society look like?..."
EVENT	International Day of Persons with Disabilities - Blog Symposium
BLOG	"Today is the UN International Day of Persons with Disabilities..."
BLOG	Her place in the struggle
BLOG	Kick That Door Down
	International Day of Persons with Disabilities
BLOG	Boycott Autism Speaks
	Settlement Reached in Huronia Class Action Lawsuit
BLOG	'Disabled' Mannequins Ponder the Notion of Perfection
IMAGE	If physical diseases were treated like mental illness
POST	"You've just got to smile when Australia's Discrimination Commissioner..."
BLOG	Why? Why? Why?
APPEAL	Corporate Partners & Supporters of Autism Speaks: Terminate your financial support of Autism Speaks.
POST	"Only 50 years ago persons with intellectual disabilities..."
POST	"It is not a question of patronizing philanthropy towards disabled people..."
POST	"Many are saying and showing how Nelson Mandela changed the world..."
POST	"B. is the 14 year old autistic son of an online friend of mine..."
LINKS	In the News - November 2013
BLOG	Why I Don't Like Functioning Labels
EVENT	Boycott Autism Speaks Twitter Bomb
POST	"For whom does the bogus "autism charity" Autism $peaks actually speak?..."
BLOG	Lovely Video and the Disabled Body
	The Forgotten Minority
BLOG	Inclusion and Autism... leaning in
BLOG	Safe
BLOG	Ritual Humiliation in the Hospital
BLOG	Autism Speaks and Signal Boosting
IMAGE	Depression Infographic (autism spectrum disorder and depression series)
VIDEO	Free our people.
IMAGE	Gender and Autism: A Preliminary Survey Post
BLOG	#BoycottAutismSpeaks: @HomeDepot
POST	"Please don't support Autism Speaks..."
POST	"Here is a plain list of the twitter handles..."
BLOG	Freeze mob fights ‘R-word’ stigma
BLOG	Why I stand with #BoycottAutismSpeaks
	When Josie Webster and the disabled kids weren't invited to the school dance, her mother made a revenge video
BLOG	Real Consequences
BLOG	Wright vs Right: Autism $peaks is Completely Wrong
APPEAL	Stand up and fight for the society we want to live in- WOW Petition
	MUM STANDS UP FOR DISABLED SON
BLOG	Be Gentle
BLOG	Mali Asked Me What "Retard" Means
BLOG	Inspiration Porn
	Interview with Jay Dolmage, Author of Disability Rhetoric
BLOG	Telling Finn He Has Down Syndrome
BLOG	The Mermaid and the Smoo
	Talk:Autism Speaks/Controversy links
VIDEO	Watch This Kindergartener Sign Her Class Holiday Concert As A Surprise For Her Deaf Parents
	Dispatches: Will False Signs Bring Change?
BLOG	The Lobotomy Files: Forgotten Documents Reveal Government Lobotomy of U.S. Troops
PRESS	Disability Advocacy Group Condemns Legislation by Representative Tim Murphy That Will Harm Individuals with Mental Illness, Their Families and Society
BLOG	Hands
EVENT	Boycott Autism Speaks: Virtual March
BLOG	Want to know more about autism? Ask someone who is autistic
BLOG	Environments Like Pollock Taken Literally (A Poem)
BLOG	Out of the Goodness of Your Heart
POST	"Please share far and wide this plea from a desperate parent..."
BLOG	Normalcy Speaks: public service announcement
	Belgian Senate votes to extend euthanasia to children
BLOG	Supporting a Loved One Through PTSD or Panic Attacks
	Laws calls parent a 'retard'
	TF uses rogue tactics in storefront stings across nation
	The Arc Calls on Department of Justice to End Tactics and Thoroughly Investigate Allegations that People with Disabilities Were Exploited in Sting Operations
VIDEO	"Facebook's new changes are going to receive A LOT of backlash from users..."
	“The Third Glance”
	Facebook post lands Torrance special-education teacher in hot water
BLOG	Ho Ho Hum
IMAGE	"Presume competence rather than seek pity..."
VIDEO	P4A 2013 | Autistic Self Advocacy Network
BLOG	Red Dress
IMAGE	"When we can say we're a society that's not merely aware, but that's actually in acceptance..."
PRESS	Grassroots protesters condemn Autism Speaks as hateful and call for boycott
POST	Virtual March on Autism Speaks Information
BLOG	#SolidarityIsForTheAbleBodied, and Feminism’s Ableism Problem
EVENT	The T-21 Blog Hop - December 2013
IMAGE	"When Autistic people consistently tell you that something is wrong with an autism org..."
BLOG	ALLY
BLOG	Anger
BLOG	Reclaiming Our Autistic Children #BoycottAutismSpeaks
BLOG	Advocating, Why it’s Important
BLOG	Celebrating Difference
BLOG	Doctor How
BLOG	I Will Not Remain Silent
BLOG	Oh Come, Oh Come
BLOG	The Great Chicago TASH Adventure
BLOG	Merry Christmas!
BLOG	Iowa View: Harkin's antiquated stand on disabled wages
POST	"When police defend themselves with the following after killing someone with an intellectual disability..."
BLOG	This Is What Disability Binarism Looks Like
IMAGE	"Autism Speaks' brand of "awareness" from the "I am Autism" video..."
BLOG	Autistic Regression and Fluid Adaptation
BLOG	The Best of Times, The Worst of Times...
BLOG	What actually matters…
BLOG	December Disability News and Blog Post Round-Up
VIDEO	Shit academics say about access
BLOG	Talking is Hard
POST	"Let's work towards a world in which a father murdering his intellectually disabled son does not lead to reporting of an "act of love", but of a murder..."
PHOTOS	A Catalog That Believes Reality Can Sell Clothes Better Than Photoshop
BLOG	How to Be an Ally in Two Easy Steps
	Netflix Will Caption All Streaming Videos by 2014, Per Settlement
	Quit Using The "R-Word" In Three Easy Steps
AUDIO	Autism Spectrum and Social Media: fun times with misinformation.
BLOG	Autism Speaks…You Are #4
APPEAL	Walmart: Don't Target Autstic Children: Remove Autism Speaks "school supplies" from your stores
BLOG	Protesting Autism Speaks

December also saw another edition of the T-21 Blog Hop...

The T-21 Blog Hop will take place every month on the 21st, for three days and will continue to feature advocacy posts from across the disability community.

We look forward to January's entries!

...And that's the news.  Keep the stories and information coming!