Tuesday, October 21, 2014

The T21 Blog Hop - October 2014

As we find ourselves in October once again, I must admit, I'm feeling a little more optimistic than last year.

October, traditionally in the USA, is Down Syndrome Awareness Month.

Last year at this time, I (and a few more like me) were met with a certain degree of resistance regarding the gulf between awareness campaigns and the actual creation of a climate of acceptance.  I personally was mocked, received hate mail, was party to some online bullying... and I didn't get it half as bad as some of my fellow bloggers get on a regular basis.

With that, and my ongoing health concerns, you can imagine why I have remained reletively silent lately.

However, hope does spring eternal.  In my silence, I have been able to listen... and have been delighted by other voices taking up the call.  Acceptance, not awareness.  Meaningful inclusion.  Equality.  Justice.  These words have been a battle cry, and will be again.

For now, I will re-share a few of my older pieces for this month;  words that I solidly stood by in the past and continue to do so now.  Not surprisingly, the theme for this month's Blog Hop will be acceptance, of not only Down syndrome and other developmental delays/intellectual disabilities, but of disability in general.  I will also invite colleagues, friends and bloggers from all over the world of disability to participate; there is so much we can learn from each other.  There is so much more that we all have in common.

Please join us for the next three days and read some wonderful writing about acceptance, meaningful inclusion, equality and justice.  Perhaps together we can make a larger impact.  Perhaps we can find another few voices along the way.

Monday, September 1, 2014

In The News - August 2014

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 from August 2014.

AUDIOindicates 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, image or comic
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 indicates a press release
QUOTE indicates a meaningful quote
STUDY indicates a study or discovery
THREAD indicates an online discussion thread
VIDEO indicates a video or movie clip
VLOG **NEW** indicates a video blog post

Mealtime Musings: Needs Matter
BLOGDisabled Americans fighting for the right to save more money
IMAGE"Image Description: A layered light purple and yellow background, painted with vertical..."

Preschoolers with special needs benefit from "inclusion" classrooms

7 Things People With Disabilities Are Tired of Hearing

Toronto, people with disabilities deserve better
POST"Good news! It looks like Build-A-Bear Workshop is done with Autism Speaks!! We will keep everyone updated... #BoycottAutismSpeaks"

Depression: Here's a Big, Fat, Fuck You
Aspergers and Depression: the masking effect (autism spectrum disorder)

IMAGE"Yeah he's different.  Doesn't always do things like you and me.  But you know what? He's my Grandad.  And together, we got this..."

Deeper Levels of Stigma

Douglas P. Lathrop, Editor of Kids on Wheels, Dies at 50
IMAGE"The people we support are fully human and equally sexual, when accepted, will lead to huge changes in how we help people". - Dave Hingsburger
IMAGEHow to support someone who's depressed
POST"Saddened and disappointed by this from Richard Dawkins..."
The T21 Blog Hop - August 2014
POST"Down Syndrome Ireland statement in response to Richard Dawkins comments on Twitter regarding Down syndrome..."
My Anxiety is Not Disordered
We are perfection
POST"Richard Dawkins does not apologize. He sees no fault in his logic of equating Down syndrome with suffering and is unable to examine the fallacy of..."
BLOGGrowing Up into an Autistic Adult
Autistic Sun
BLOGAdvocacy and Self-Advocacy - What’s it all about?
Depression: Here's a Big, Fat, Fuck You
BLOGThe Question of Acceptance
highest highs and lowest lows
Bullies, Bigots and Buffoons, Oh My
The Speed of Lightning
Words of Power
Power Cafe!
POST"I have been looking deeper recently. I am unpacking independence and the..."
POST"I've apparently invented time travel as I woke up to this:..."
This place is New.
VIDEOSpecial Needs Student Served Lunch From Trash

Putting the "Health" Back in "Mental Health"
Picking Rocks
I Don’t Need Your Awareness

Police issue service animal reminder

IMAGE"My brain injury may be invisible.  But I am not..."
BLOGX Years of Experience

IMAGE“I would rather die in a fire tonight living in my own home than live to be a 100 years old living in this institution"

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

Thanks to all who participated.

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.

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

Thursday, August 21, 2014

The T21 Blog Hop - August 2014

August, as they say, has been interesting thus far.

So much has been happening... It has gotten me thinking of Acceptance vs Awareness again, the question of what is normal and not, what is health and what is considered illness and when the change from one to another actually happens, if at all.

I guess what really hit it home today is the following quote from the agency who is monitoring and aiding in my son's development:

"-Wyatt has Down's Syndrome [sic].
 -Wyatt is Twin 'A'.  Twin 'B' is a healthy female."


With this in mind, it's time for a little more acceptance, methinks.  Time for a little more slice of life, time for a little more "... is natural".  Down syndrome is a part of life.  Autism is a part of life. Disability, in any shape or form, is natural and not sickness.  They are not to be feared, extinguished, beaten.  They do not need a cure.

I'm going to extend it a little further this time too.  Depression is natural, as is anxiety and many other things.  They happen, they exist.  They can be quite disabling.  They are not to be feared either. 

I really look forward to a time when this isn't a discussion. 

Grab some ice for a nice cold drink, and read some great Acceptance blogging.

Tuesday, August 12, 2014

Depression: Here's a Big, Fat, Fuck You

I was on my way to work last night when I heard the news about Robin Williams.  I knew, just from the way things were phrased, that one of two things happened:  asphyxiation, or self inflicted wounds.

I wasn't wrong.  Sadly with this kind of thing, I rarely am.

As I walked into my little unit, a place not so much of healing, but more of psychiatric diagnosis and observation, a sadness welled up in me.  Not the passing "aww, what a shame" of some far off, overhyped star, but a genuine sadness.  A feeling of loss.  Growing up with first Mork, then his standup comedy, then a bazillion movies that have made me cry and laugh until I nearly passed out (and nearly peed myself in the process), it is only natural to mourn his loss.  But, for me, at this time, this loss takes on a whole new significance.

This death, along with a few others have come to me in a time that I never thought would happen.  It is not a coincidence that I have not been writing like I used to.  It is not a coincidence that I have taken a heavier focus on mental health here and on my Facebook page.  It is not a coincidence that I have stopped talking about our life and adventures.  In all honesty there haven't been many adventures lately.

You will see many things in the next few days on what an asshole depression is.  How dark it is.  How it lies.  How it creeps into your room at night and whispers horrible fucking things in your ear that makes no sense at all.  How it yells mean things at you over and over and makes you believe that you have nothing in your life.  There is no hope and never will be again.  You have nothing and you are nothing.

I know this as I have been a psych nurse for over 12 years now.  I have seen every type of depression, from the depression that comes with Bipolar disorder, with PTSD, to psychotic depression, to reactive depression, to post-partum depression, to plain old "I feel like fucking shit forever"  bio-chemical, whatever depression.  I also know this because in March, I almost jumped in front of a moving vehicle.

It's a weird feeling, standing on a traffic island outside your hospital, watching cars speed down the street as they try to beat the light.  Disorienting.  Dizzying.  It's noisy, jarring and only vaguely drowns out the racing thoughts in your head after yet another awful shift, yet another 10 punishing rounds in 12 hours, in the profession that has the highest rates of bullying.  You close your eyes and breathe.  You can hear your breath and your heart beating as you jam your earbuds in.  Not to play music this time, but just to muffle the noise.  An 18 wheeler goes by and the gust of wind blows the hair out of your eyes, where tears that you didn't even know existed had temporarily glued your bangs.  You close your burning eyes and feel for the rumble.  Another goes by.  You rock on your toes, up then down... your sore feet in your work runners straining... up... as the impulse to run kicks you in the chest and your brain screams GO!  You fall forward a bit, your backpack throwing you off balance and you centre yourself again as the truck goes by and this opportunity is lost.  Rock.  Rock.  Up.  Down.  Rumble.  Up.  GO!

Thankfully, that morning I took a sobbing breath that hurt my chest, and took a step back.

This is the point where people that have never known the face of depression, that have never stared into it's creepy-assed maw and seen an endless fall say things like "but she has so much to live for" and "what does she have to be depressed about" and "but she seemed so happy, so funny"  and "what about her poor children" or "she should go to _____ [some far off "less fortunate" place] and experience what sadness really is!" and worse.   Maybe if they are a complete jerk, will try and blame it on Wyatt and his DS, like my hecklers do from time to time.  Or my absolute favourite, that I "caught" it from one of my patients.


At that moment, standing on that island that I had stood on at least twice a week for over 6 years, I didn't give a flying fuck about my kids or my family.  I didn't give a shit about my job, my friends, my life, my gifts.  It's not about being selfish either.  Self-absorbed maybe, but not selfish.  It's about listening to the crap that your brain has been telling you for months.

Depression, whether it stands alone or is part of something bigger, starts out pretty tame.  Maybe you don't have the same amount of energy or are sleeping too much or not at all.  Maybe you hit the carbs like a ton of bricks or maybe your appetite just packs up and walks out one day.  Shift-workers are really prone to this as they already don't sleep properly.  After being up all night and doing all the things that you are supposed to do, maybe you start feeling a little paranoid.  Your memory is terrible and you keep misplacing things.  The anxiety is awful and maybe you start self-medicating or over-medicating with drugs, alcohol or prescriptions.  You feel like shit and you start to look the part.  Maybe you envision yourself hurting yourself.  Maybe you even give in to the impulses and cut or burn or scratch or pick or pull hair.  Maybe your hygeine takes a hit, you start sleeping in your clothes and don't clean up after yourself.  The house is a mess, more than usual.  Any body issues that you had before are a million-fold worse.

And then it gets weird.

It's also important to understand that one person's depression is not the same as another.  You can have two people with identical backgrounds and similar life stories... and what works for one will not work for the second. 

Being something that is nebulous to begin with, being a subject that is still very much taboo, being a state that is harshly judged even in my very own profession (and trust me, I will be, after this admission), naturally there are not many people that you can talk to about this thing.  Even people that you normally would feel that you could tell your deepest darkest secrets to suddenly seem suspicious.  Untrustworthy.  Your brain, the very thing that drives the meat clad skeleton that you are, where your hopes and dreams live and the squeeing occurs before it hits your mouth when you see all the baby puppehs and kittehs, is now telling you, you unloved piece of friendless depressed shit, that you are completely alone in a sea of humanity.  Maybe you are aware of the changes, maybe only those around you see them.  I was aware of them.  I had fought them.  And I was fucking tired of it.

Which brings me to the corner.

In the end, it was one person that made me step back.  One friend who I knew didn't think I was a walking waste of protein.  Not my husband.  Not my closest friends.  Not the the over 350 friends I have on Facebook.  One person, who didn't judge, who didn't express exasperation at me, who didn't throw up their hands and even laughed when I named this thing that had slowly, insidiously crept over me "Venom".   Who pointed out patiently that I had helped hundreds of people over the years, why should I be ashamed of needing help myself for once?  One.

And I am forever grateful.  As I am for the brusque pep talk that occurred afterwards.

I crossed the street safely that morning, got on the bus, went home, upped my medication, went to bed and went to see my doctor after I had slept.   Thankfully, he trusted me enough to continue my fight without medical and police intervention.  Thankfully when I laid everything out he listened, patiently, agreeing here and gently disagreeing there.  Thankfully he believed in me too.

Although we are talking a matter of months, I find it hard to believe that this ever happened.  It's like this was a movie of a week, like it happened to another person.  But it didn't.  I was there.  It was me.  In the months since then I have re-framed thousands of negative thoughts, grounded myself, been mindful of my surroundings, meditated, been massaged, talked until I had nothing more to say, quit drinking, taken it easy, ate better, worn makeup and forced myself to shower and dress and accessorize, actually spent some money on myself, forced myself to socialize and yes, even slept.  I've also taken my goddamned meds, even though I hate them and their side effects.  I've also done a total revamp of my "coping toolbox".  Because after all, like I've said a million time to clients "if it's not working, do something else." 

So I told you that to tell you this...

One person, in one fleeting moment, can make all the difference in the world.  Be that person.  Be there for each other.  Never make the assumption that it can never happen to you or to anyone you know because of one thing or another.  Especially don't make the assumption that if you are in medicine or a first responder that you are immune:  by July of this year, in Canada alone, 13 first responders had successfully committed suicide in 10 weeks.  Don't think that because you don't know anyone in your family that has had a mental illness or that you are particularly strong that it won't happen to you either.  I'm one of the strongest people I know and my depression (an offshoot of my PTSD) almost fucking killed me. 

I have worked every day, sometimes minute by minute to get to a place where I like myself again.  Where I feel good in my skin, confident with my decisions and be able to tell people that I love them and actually mean it.  It was work.  It still is work.  One of the many lessons that have come out of this time has been a new understanding for some of my patients.  People may not be in the headspace to do the work or have the means to start, or the will to continue with it.  That the difference between an attempt and a thought may truly be access to means or an anchor.   That when a person says "bye" and goes to do something, at that moment they really do mean it, even if that moment passes quickly and they are back to watching sitcoms and eating Cheetos shortly thereafter.

Depression is a complete asshole.  Churchill likened it to a black dog.  I likened it to Venom, an insidious symbiote that made me feel powerful and immortal in some senses while slowly enveloping me, smothering me and whispering lies in the dark.  I've heard it described as an abusive boyfriend too, one that buys you something pretty after beating the shit out of you all week.  I don't know what Mr.  Williams called his or what whispered to him or what led to his decision to end his life.  But I know my life and the world are very much poorer without him.

If you are depressed, find your one person.  Be that one person if you aren't.  If you are suicidal, seek out help;  Google, look in the phone book (if they still have such a thing), go to the hospital/urgent care clinic, call a hotline, call 911.  Just do something to stay safe.  When you get there, start talking and don't stop until you are finished.  Don't care about what the neighbours or your family or your friends or your colleagues will think.  1 in 5 of them will be in your shoes at one point or another anyway.  First do the math, then do the work.  It is possible to be better, to live a happy life.  It's just your brain telling you it's not. 

So Depression, here's a big fat FUCK YOU.  That goes for you too Anxiety, PTSD, Bipolar I and II, OCD, Post-partum and the rest of the gang.  You may get some of us, but you are not going to get all of us.

You're certainly not going to get me now.  I shanked your punk ass, bitch.
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