Merry Christmas!

Told you I'd give the damn thing a hat.

The T-21 Blog Hop - December 2013

Here we are, the last blog hop of 2013!  I look forward to many more in 2014!

Although the name is reflective of Down syndrome, this hop is open to all blogs in the disability and special needs communities.  Self-advocates, allies, parent advocates, all are welcome.  Posts can be old or new, as long as they meet the requirements set out at the time.  Posts should be about advocacy or activism. 


If you need more information about the T-21 Blog Hop, you can click here.

For more detailed instructions on how to add the script to your post, click here.

Ho Ho Hum

This time of year is pretty weird with us.  Unlike your average working Jane, I [enter adjective here] chose a profession that is 24/7.  In the first week of October every year, I learn whether I will be working Christmas or New Year's that year (and whether the rest of Team Logan will be visiting extended family for Christmas or not).  It's either one or the other, there are very few exceptions.  Fairness dictates that we alternate but there are some of us that do have a distinct preference.  Since my littlest are still very little and my going-to-bars/parties days are over, I really have no use for New Year's Eve other than an excuse to sit in my basement, drink wine and eat too much.  So, I opt to work it as often as I can.  My younger colleagues can go out and party and I can spend Christmas with my growing family, instead of being completely overcome with waves of homesickness and loneliness.  Lets face it, Christmas in the psych ward sucks jingling donkey balls; it doesn't matter which side of the glass you are on. 

You'd think I'd be all over the seasonal trappings like, well, me on a Christmas cookie... but you'd be wrong.  I have no idea what's wrong with me this year.  Unlike people who start in early November (or even earlier, GAH!), I wait until after my Birthday to start.  The first week of December usually finds me stomping around absentmindedly in my Crocs in subzero weather trying to hang lights on the house (which is even more fun in Crocs if there is snow on the ground).  I'll be hauling out our "new" 7' artificial tree (that we got two years ago) from under the stairs and gleefully start sorting out the Lang syne of decorations that we have.

But not this year.

Perhaps it was the uncharacteristic celebration of my Birthday that's thrown everything off kilter.  Maybe it's the piles of laundry and "kibble" that accumulate about the place.  I have no idea.  I do know that I can't shake the feeling that I'm somehow two weeks behind everyone else.

My neighbours must hate me at this point.  Everyone down the street, Christian or non, has a display of twinkling lights on their house.  Even the ones next door who more than often have a car parked on their lawn, have lackadaisically thrown a net of lights over the railing and called it festive.  I have a grumpy gargoyle, in a dead garden, which in turn is half-buried in snow.  FFS, I still have a skeleton tied to the porch (who is also, now half-buried in the aforementioned snow).

We're forgoing many of our usual customs this year--that could be part of it.  Usually I make a big deal out of a photo card of the kids to send out, but time and money won on that one this year.  I'd bet right now though that most of this stems from tiredness and a lot of the same thing that has caused a plastic femur to be poking out between the railing spokes in Mid-December. 

That 7' tree I spoke of earlier?  Didn't come down until August... and I'm in no bloody rush to put it back up again.  We stopped trying to "get one more night" out of it mid-January.  With the preparations for Wyatt's surgery and whatnot, it was abandoned (along with much of our rec room), to the spiders and piles of stuff that we dumped there as we rushed about our lives for the summer.  There's only so much "leave the tree alone!" that one person can say in a day as well.  With two curious toddlers in the house, visions of broken ornaments and trips to the ER danced in my head.

No.

Instead, I told the kids that we'd focus on their little tree this year.  That I can handle.  We always have a smaller one in the living room with the handmade ornaments Quinn and I have put together over the years (and the ones he made at daycare and school).  Our old one went to fake Christmas tree heaven last year (see "leave the tree alone!), so this year found me hitting Canadian Tire to get a new small one.  It proudly graces our living room where we spend most of our time.  Q and I have already added to it and I look forward to the little things that we can all work on together for it.

My enjoyment right now comes vicariously through the kids.  Quinn delights us daily with the spoils from his Lego Advent Calendar.  I'm still at a loss why the Firefighter came with a sausage, but okay, sure.  We've also discovered that we're both good at making what he calls "snowflake lanterns".  Actually, one of my colleagues gets the credit for these, but after she had taught me (and we decorated the nursing station) I came home and taught him. (Here is a handy how-to.) We were somewhere around the second one each when he turned to me and asked what would happen if he alternated the widths of his cuts back and forth.  Having only done thin or thicker strips, I had no idea and admitted that I wasn't sure if it was going to work.  He shrugged and gave me the look while telling me that "it doesn't matter if it turns out as expected or not... it's still art."

Ok then...

Once we ran out of blank paper, we used some of his origami paper to make both large ones to hang from the ceiling and a few small ones to hang on the tree.  We did this in just under an hour and the twins got up from their nap to a world of wonder. They ooohed and aaaahed over what Zoe calls "the kites" covering the living room ceiling for quite some time.  It's the little things...

Homemade ornaments on The Kids Tree.  The white and red
ornament is a smaller version of our "snowflake lanterns".

The stockings got an overhaul too, in preparation for Santa's arrival.  Quinn's ripped last year, so he got a brand new one and every other one needed a drop of glue here or there or a touch up of any sparkles.  It was fantastic watching their eyes light up and Zoe's little feet dance as I showed them the results.

I'm sure I'll get there eventually... by the time Christmas Eve rolls around and we watch It's a Wonderful Life (and cry) for the umpteenth time, I'll be in the zone.  Maybe I'll snap out of my Seasonal Funk in time to get my Merry on and bake something before hand.  Or, maybe not.  Things like having to slog fruitlessly through the mall crowds for two hours last night searching for snow pants for my eldest, while my youngest yelled at random passers-by (in between nose wipes) and my middle child pulled everything down that was within reach... really aren't helping to be honest.

Meh.  I'll just have to listen to some carols or at least some Zebrahead over and over until I cheer up.  Maybe I'll go make myself some grog and find enough happy to go hang those lights and finally take the skeleton down.

Or maybe not.

Or... Maybe I'll just give the damn thing a hat.

In the News - November 2013

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

November was a particularly busy month as it was the very first Autistic History Month, included Autistics Speaking Day, and was also Epilepsy Awareness Month.  November saw two very successful anti-slur advocacy campaigns that united advocates across the globe.  Included in the links below are also many posts and a flash blog speaking out against Autism Speaks. 

This month, in order to capture as much of the information as possible, I've included an "IMAGE" category to showcase infographics and the like, as well as a "POST" tag to highlight some advocacy work that is often overlooked as it exists solely in a social media format.

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	**NEW** 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	**NEW** indicates an advocacy statement made through social media
STUDY	indicates a study or discovery
THREAD	indicates an online discussion thread
VIDEO	indicates a video or movie

BLOG	Autistic as a Reclaimed Word
BLOG	I am at peace (with killing my socially constructed self) (Pt. 1)
BLOG	I am at peace (with killing my socially constructed self) (Pt. 2)
BLOG	I am at peace (with killing my socially constructed self) (Pt. 3)
BLOG	Supporting United States Ratification of the U.N. Convention on the Rights of Persons with Disabilities – Why Every Voice Counts!
BLOG	Autistics Speaking Day - My Fingers Speak
	Disabled blogger really doesn’t want to be in your ‘prayer sandwich’
BLOG	Signal Boost: #AutisticsSpeakingDay
	No You Don't: Essays from an Unstrange Mind
IMAGE	"Autism doesn't speak..."
BLOG	An Autistic Social Issue: Dismissal and Disrespect
POST	"Disability is Normal..."
BLOG	Aspergers and Depression: the masking effect
POST	"ACTION ALERT..."
BLOG	Autistics Speaking Day 2013
VIDEO	NJ Self-Advocates speak out about the R-word
BLOG	Down Syndrome Awareness Month: Stereotypes
BLOG	So, what is the problem with Autism Speaks?
BLOG	Impact
LINKS	Ratify the Convention on the Rights of Persons with Disabilities
BLOG	The Colour of Flowers
IMAGE	Inclusion Flowchart
BLOG	Myth: All Autistics are Happy Being Loners
POST	"When our children are having a difficult time..."
IMAGE	Throw away the developmental charts...
BLOG	My Anxiety is Not Disordered
EVENT	Free Movie Screening - Colegas ("Buddies")
BLOG	The Way We Treat Others
BLOG	Are you a lazy, ignorant carer Katie Price?
BLOG	Here, try on some of my shoes.
BLOG	There's That Word Again...
	Disability Studies: A New Normal
IMAGE	Kat Von D.'s Twitter response to naming her lipstick "Celebutard"
BLOG	Advocating in Your Community
PHOTOS	Far Out on a Limb
BLOG	Being Retarded
BLOG	End the Word
BLOG	Retarded
BLOG	Modern Day Monstrosity
POST	"Sephora launches..."
IMAGE	Aiden and Colin
BLOG	Autistic History Month 2013: ACCEPTANCE
BLOG	An…apology?
BLOG	More On ABA
APPEAL	Sephora: Sephora sells a Kat Von D lipstick 'celebutard', combining 'celebrity' and 'r#tard'. The 'r word' degrades people with intellectual disabilities. Sephora must: Apologize. Withdraw the product.
BLOG	Please Join With Us
POST	"Best fucking tweet yet..."
POST	"We are waiting..."
POST	"Sephora has just contacted us..."
	Sephora, "Celebutard" Lipstick? Are You High On Tattoo Ink?
BLOG	It's All About Etymology
STUDY	Participate in our research
BLOG	Epileptic Acceptance Month: Inside a Seizure
POST	"From Change.org via David Hindsberger..."
POST	"Sephora's Kat Von D lipstick shade..."
	The Truth About the Disabilities Treaty: Myth Busters
BLOG	Sorry - Gotta Catch Em All
BLOG	The Saint and The Curmudgeon
	Makeup Company Sephora recalls 'Celebutard' lipstick
	Judge: "City Does Not Have an Adequate Plan" for Evacuating Vulnerable During Disasters
	NDSS Statement on Sephora ‘Celebutard' Lipstick by Chris Burke, NDSS Goodwill Ambassador
	Cabbie refuses wheelchair-bound man
	'Celebutard' Lipstick Pulled From Sephora After Backlash Over Name
VIDEO	Tammy Duckworth, Iraq War Veteran, Urges Congress To Ratify Disabilities Treaty
POST	"Minority slur is NOT a "fun and silly way to market a product."..."
IMAGE	Paul would like to thank everyone...
	Faces to order: how 3D-printing is revolutionising prosthetics
VIDEO	Voice surgery sparks ethical debate
	Last Immigration appointment was two days before they were found dead in London
VIDEO	Young Stroke Survivors with Aphasia - Laura
BLOG	Taking Control:  when a small child finds a big voice
	Giving My Uninformed Consent to Die
BLOG	Autism and Thoughts on Written Output: Infinity Blade II… A review by H
BLOG	Our kids in the media
	What Nondisabled People Think When They See Us
BLOG	Cuthbert Reporting In: Remembrance Day
BLOG	A Deer Hunter is Dead: Humanity and Life Needlessly Ended
BLOG	Lest We Forget
BLOG	Epileptic Acceptance Month: Frozen Doll
VIDEO	Outsider Artist Judith Scott
BLOG	The Price We Pay for Autism Speaks
EVENT	International Day of Persons with Disabilities
BLOG	Autism Speaks Kidnaps "Policy Summit"
BLOG	Autistic People Are Not Going to Take This Lying Down (Updated)
BLOG	An Unholy Alliance: Autism Speaks and the Judge Rotenberg Center
BLOG	At the Store: What do you think?
EVENT	Protesting Autism Speaks "Policy Summit" at George Washington University
BLOG	What’s Wrong With Autism Speaks?
EVENT	T-21 Blog Hop
BLOG	Prejudice
EVENT	Canadian Blog Awards
POST	"Trigger warning..."
IMAGE	"I am a working adult..."
BLOG	Why are so many people mad at Autism Speaks right now?
BLOG	The Cost of People
BLOG	no more – a letter to suzanne wright
	ASAN-AAC Statement on Autism Speaks’ DC “Policy Summit”
	The Blame Game! Are School Problems the Kids' Fault?
POST	"In light of this week's piece..."
BLOG	Why I’m Proud of my Community (including our allies!)
POST	"Segregated and Exploited: The Failure of the Disability Service System..."
IMAGE	Autism $peaks Budget...
BLOG	Right On!
VIDEO	Trailer for "A Whole Lott More" with captions
POST	"Many people who touch on representations of and discourse on disability..."
BLOG	Check All That Apply
AUDIO	Voices at the Tables
BLOG	Cups of Coffee
	Hiding behind niceness
POST	"Language matters in relation to disability..."
	We Should Be Natural Allies: The LGBTQ And Disability Communities
BLOG	"This is Autism" Flashblog
VIDEO	What Do You See?
IMAGE	"Passengers rally behind Blind man and his dog..."
POST	"In the 1980's, "The Max Planck Society admitted that its collection..."
POST	"Queerability Official Response To Autism Speaks..."
	An Open Letter to Suzanne Wright, Co-Founder, Autism Speaks
POST	I am Openly Autistic! I am NOT ashamed to be Autistic!
BLOG	Art, (dis)ability, seeing in pictures and speaking with the body
BLOG	Fear, Hate, and Exclusion: It’s time to silence Autism Speaks!
IMAGE	"I have only found one thing that I think..."
	Adelaide fashion duo defend T-shirts featuring word 'Retarde'
POST	"Given that The Arc of the United States and The Autism Society of America..."
BLOG	An Unexpected Humiliation at a Conference on the Humanities, Disability and Health Care
IMAGE	"This is Autism..."
BLOG	I am H: This is Autism
BLOG	the epidemic is not autism it is ignorance
BLOG	This is Autism Flashblog on Monday, Nov. 18, 2013
BLOG	Autism is
BLOG	This is Autism (Written by Emma)
BLOG	"Clayton Cross, the director of the chain carrying the "retarde" shirts..."
	Globalize clothing chain takes remaining few 'retarde' shirts off shelves following public outrage
POST	"People with intellectual or developmental disabilities shouldn't have..."
BLOG	Raising Rebel Souls: This is Autism
BLOG	‘This is Autism’ Flashblog: What Autism Is (to Me)
BLOG	This is My Autism
BLOG	This is autism (for us)
BLOG	Autism is a brain that is just different
BLOG	Non-speaking Autistic Activist Responds to Suzanne Wright of Autism Speaks
BLOG	A View of Autism Speaks From Afar.
	Tell Sevenly that Autism Speaks Doesn’t Speak for Autistics!
BLOG	Did You Really Just Say That?
BLOG	This is Autism
BLOG	Disabled adults get inadequate health care, study finds
BLOG	This Is Autism
BLOG	Severely disabled, but ineligible for mobility benefits
BLOG	It's Never "Just A..."
	My Place in This Conversation
BLOG	No Access
BLOG	I ALREADY AM A HUMAN BEING
BLOG	I was bullied because I was disabled
EVENT	The Church of 80% Sincerity
VIDEO	Advocacy group says Washoe County schools still using outlawed punishment
	Lawmakers Move To Strike ‘Mental Retardation’ Language From Phila. Laws
BLOG	How Do You Define Activism?
	De-Mystifying Stimming
BLOG	When an Advocate Fights Advocacy: Mel Leckie's Personal Protest of a Protest
BLOG	Emma’s Letter
VIDEO	#myvoiceis 1
VIDEO	Jean Vanier on Bullying
EVENT	The T-21 Blog Hop - November 2013
BLOG	Autistic History Month 2013: The History Post That Never Was
IMAGE	#justiceforethan
BLOG	Dear Apple, your dictionary is crap
BLOG	Don't Call Me Inspirational
BLOG	"Privilege" doesn’t mean "easy"
BLOG	Selected To Silence
BLOG	Me? Stim?! Pah!
BLOG	Believe and live
	Cognitively Accessible Language (Why We Should Care)
BLOG	A Brief History of Down syndrome - Part 7: Abused, Neglected, Forgotten
BLOG	Why I Don’t “Diagnose” Historical Figures
BLOG	Normalcy Speaks: a bizarro post
POST	"A 34-year-old Gallupville man has been arrested..."
	Stimming: What autistic people do to feel calmer
BLOG	Autism
	Understanding Deafness: Not Everyone Wants to Be 'Fixed'
VIDEO	Restraints and seclusion in BC schools
BLOG	RESPECTE
BLOG	An #Aspergers Child on Being Different
BLOG	Meet Me At the Intersection
BLOG	What Autism Means to Me
POST	"This is Hadamar.  It was once a hospital..."
	Common Questions about RDSP
POST	"On economic justice and Disability Studies:..."
IMAGE	CRPD and Optional Protocol Signatures and Ratifications
	The Able-ist Gaze: Imagining Malingering
	How to Do Right by the Disabled
BLOG	Wise Words When One Enters the World of Disability
POST	"On Cognitive Disability, Eugenics, and the Object Metaphor:..."
BLOG	Being My Friend Does Not Make You A Hero
	Misguided gestures of a condescending kindness
	Should 'Isolation Rooms' be banned in Canadian schools?
BLOG	“People Do Not Believe Me”
BLOG	False Positive
BLOG	Self advocates with Down syndrome tell of their life experiences
POST	"Did you know that Square One Shopping Centre in Mississauga..."
	Murder of Disabled Children Provided Anatomy Lessons for Nazis
BLOG	Prosopagnosia and Asperger’s in the Family
POST	"OKC school fined for threatening expulsion of child with Down syndrome..."
	Disabled Characters in Fiction
	Disabled woman denied entry to U.S. after agent cites supposedly private medical details
BLOG	What is Accessibility: A Quiz
	‘Disabled’ in Britain, just ‘foreign’ in Japan
VIDEO	Disabled baby denied heart transplant
	Please don't take my baby: Agony of mother whose baby girl was put up for adoption after secret court judge forced her to have a caesarean

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

We had 17 bloggers participate this time, with some new faces amongst the more familiar ones.  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 December's entries!

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

Hoist the Colours!

I know that I've probably mentioned this umpteen-zillion times by now, but in case you missed it, I'm a nurse.  I'm not the kind that looks after surgical patients or really sick children.  I don't hold people's hands as they leave this plane of existence and I'm not there to receive them when they arrive.  I do meet people on the worst day of their life, but I'm not the one resuscitating your loved one or assisting with life saving surgery.

I'm a Mental Health Nurse.  I work in a psychiatric Emergency department.

As we joke amongst ourselves, I specialize in drama, not trauma.

We're a rare breed, us Mental Health folk. Our brand of humour is dark, our tasks often darker.  We're ostracized.  People tend to shy away from us, even our own colleagues.  It's true: one of the fastest ways to kill a conversation is to mention you work in psychiatry.  We work where no one wants to go, with people that don't want to be there, in a world that wants to pretend that mental illness does not exist. 

I don't talk about the real details of my job here... or with my family, or my friends or anywhere outside work.  I do this for many reasons;  patient and staff confidentiality and protecting my family being the most obvious ones.  There's also a matter of respect for you the reader, who may or may not have had prior experience in my area of the hospital.  There's also a matter of respect for the ghosts that I carry.

And those ghosts are legion.

I navigate through this life by trying to keep work and home separate, but there is some inevitable leakage from time to time.  While there, I battle stereotypes and educate patients and families.  It wasn't that big of a surprise when I found myself in that role here.  There is a long list of "nursey things" that I habitually do in my home life, things that family and friends often find amusing, like obsessing over the integrity of the skin on my hands.  I've added reflective practice to that, especially when it comes to my advocacy. 

It's a tricky thing, keeping this life afloat.

There are days where the work sticks about my person like so many little post it notes.  The details of so many lives, so much anguish is a lot to absorb and meticulously record.  System stressors, politics, outside agencies, stigma... more post-its, more memories that I wish I didn't have.  There are times when I feel almost smothered.  There are times when I can almost feel the tiny pieces of paper flap in the wind as I walk around.  There are times where I manage to pick a bunch of them off and then one tiny detail will cover me all over again.

I have seen both the best and the worst that humanity has had to offer.  I wish I could say that the former outweighs the latter.  But, it doesn't.  At least not where I am.

This year in particular, both professionally and personally, has been full of challenges.  We've taken on water at several points.  I had to do something, as the stress was starting to cause me physical symptoms  (and aggravate a few more issues that I already had).  It was time to purge the bilges as it were, to celebrate life, to breathe a little fresh air into this house.

As is the way with these things, the oppourtunity came in the form of an unexpected gift.  In October I won a cake.  Not just any cake, but a custom cake of my choosing from Chrissy's Custom Cakes.  Since I had a birthday coming up in less than a month, I wanted to cash it in then.  This year is my 42nd, so one of geek extraction might assume that a Hitchhiker's Guide theme would be the obvious choice, but it didn't feel right.  I was talking it over with one of my colleagues, henceforth known as The Admiral, and she suggested we dress as pirates.

Perfect.

Time to assume one's own life metaphor.

I did just that, Friday night.  As so many were coming from work and daycare, not everyone wore pirate regalia;  those that did however, were spectacular.  We also had a couple Batmen, a naturalist and Darth Vader.  Quinn was our cabin boy and ran coats up to our bedroom while still having time to play with his friends.  The little ones played in our daycare of a living room and some of the adults had fun just hanging out with them.  It was free and organic and fun. 

The plan originally was to do a whole bunch of hors d'oeuvres and picky things, but on the morning of my actual birthday, I woke up and decided that it was too much work and in a fit of performance anxiety we ordered a 6 foot sub.  Best. Idea. Ever.

Folks brought additional nibbles, the wine flowed and Sean busied himself making grog for all that wanted.  Traditionally it is much stronger, but trust me, this recipe will still knock you on your six.

Captain Jen's Grog

2 oz Navy Rum
1 oz Lime Juice
4-5 oz hot water
1 TBLSP brown sugar
1 orange slice
1 stick of cinnamon

With the orange and the cinnamon, it's somewhat seasonal.  After the first sip it will warm you through to your soul. 

The cake arrived early and I was delighted with the results. 

I'm on a cake!  (Sorry for the terrible photo... I did mention the grog, right?)

Most were tired and headed out early, but The Admiral and I killed a few more bottles, reveled with some good music, reminisced, and got rid of a lot of work residue.  She departed for her own ship in the (not so) wee sma's.  The next day was pretty much a write off until the late afternoon when I found the energy to get ready for my other birthday treat:  front row tix to a benefit Gala concert featuring Jann Arden and Burton Cummings.  Both were fantastic.

Sometimes you have to just have to be a little silly, a little irreverent.  Whether it's building a fort or being a pirate for an evening, you have to cut a little loose now and again.  Life is for living, in all it's salty, swirly, bloody weirdness.  It's for eating and drinking and laughing and music and spending time with those you care about and those that care about you.  Sometimes you just have to hoist the colours and declare war on what oppresses you. 

...And always give no quarter.