Friday, March 20, 2015

Happy World Down Syndrome Day and Stuff (It's Probably the Drugs Talking)

Although I am currently sitting with one leg up on the coffee table, Robaxacet and a shot of Toradol on board, an icepack on my sciatic nerve... One butt cheek propped on a couch cushion, in my new home in the middle of the frozen Arctic... Don't think that I'm not aware that tomorrow is World Down Syndrome Day.

It's the most Holy of Holies in our little corner of the disability universe.  The day.  The big one.  Blue and yellow will be everywhere and Sedna help us, we are still with the mismatched and "silly" socks.   There will be pride, yes... and there should be pride.  The extra chromosome, the condition, the disability, the whatever-you-want-to-call it, the thing that is Down syndrome, does not preclude one from their humanity, their right to happiness (and the ability to seek that happiness). 

Pride.  Yes. 
Be loud and goddamned proud.

I'm also very aware that I don't get to hold my son every day any more... that would be the hazards of isolation nursing, being away from your family for long periods.  But, that doesn't make me any less involved in his parenting (even though I am physically thousands of miles away from him).  Ahhh, my little man and his newly found skills...  In the time since my last post, he is now walking and running.  He is talking more and although he has always been very good at getting his point across using a combination of sign and Wyatt-sign and sounds and body language, he's decided to go with words.  Which is cool, because that's how I communicate most of the time too.  I say most, as I have to admit that I do use a lot of non-sensical grunting, hand waving and sighing most of the time.  I just tell myself that it's part of being the mother of three kids.  Or a psych nurse.  Or something.  Yeah...

I have a lot of pride for him too.  I'm proud of all my kids.  Every time they figure something new out or add a new trick to the repertoire, I'm on about it for days.  They amaze me, these little people.  It amazes me that my eldest can rhyme off the first 10 elements of the periodic table.  It amazes me that my daughter, who is the spitting image of me (only prettier), can climb almost anything and completely destroy a room in under 30 seconds... and convince you that it is all in good fun.  It was no less amazing to find out that Wyatt, the guy who wasn't allowed to hold the phone for the longest time as he would press all the buttons and hang up on Mommy in Nunavut, decided to call both my BFF and my mother and have conversations with them both.  Just, y'know... because he was bored.  And he could.  And eff anybody that thought differently.  They might have not gotten the full gist of the conversation, but man, he was as pleased as anything at the results.  And so am I.  Way to show us up, dude.

There's a lot of other things that I'm aware of too, despite my new postal code and our flighty "InterNOT".  The 'new and improved asylum' debate (like that is somehow up for debate).   The sheltered workshops issue.  That cute is still king, supposed superpowers, angels and pedestal ableism, the r-word, the tragedy rhetoric that is still every-blessed-where, and somehow, in some way, devaluing or marginalizing a group of people is ok, because, y'know, that's your opinion and that fact alone somehow warrants validity. 

Oy.  I may need more pain killers for that lot.

I haven't written anything here since November.  I'm aware of that too.  That doesn't mean I've faded off into the sunset (or wandered off into a northern blizzard if that analogy is more appropriate and to your liking).  I just haven't had the spoons or the words to say what I've been mulling over.  That time is coming again, thankfully.  Once I get off this couch, that is (I've resorted to lying on my side and typing now).

There's a whole lot of awareness. Up. In. Here.  But, as I've said numerous times, that alone really doesn't do anything.  Getting better and finding my spoons and doing the education through the advocacy... well, that changes minds.  Making sure that both my twins are included fully in the classroom this fall, not just one of them... well, that is doing something.  All the little considerations and leanings in that I do... those help too. 

This is about as aware as this World Down Syndrome Day is going to get for me.  If I do get off this couch at some point, I may shuffle off into the sunshine and visit some friends.  I may wear socks too, but only because it is still -30 here and only in my boots.  I will Skype my family later on and hear of the day's discoveries and accomplishments.  The subject of Down syndrome may or may not come up.   But if it does, I'll answer questions to the best of my ability (as I generally do). 

It won't come up with family because Down syndrome is just an is at this point.  It's not the elephant in the room.  It's no longer the "we have to do this and this because of that" thing.  It's just one facet of my son.  It's a tiny part of our busy life.   It doesn't make more or get in the way of any of the love that is already there.  He's a boy, doing boy things and taking part in the world around him.  Like we all do.

That's the part that I wish more people understood. 

Happy World Down Syndrome Day

Ugh.  I can't even...

Friday, November 21, 2014

The #T21BlogHop - November 2014

It's November and time again for the #T21BlogHop.

I know things have slowed down around here lately, and that has been a regrettable necessity.  It will be more apparent in the coming weeks the whys and hows and WTFs, but for now I will endeavor to keep this blog hop running and catch up on my #IntheNews posts.

In the meantime...

Inclusion, and the necessity for, the benefits of and the undermining thereof have really been on my mind lately.  Not just in my personal life and the upcoming kindergarten debut of my twins in the fall; it's everywhere I seem to look or go lately. 

In my mind, if it's still a question, if I still have to whip out, on the fly, an article on why inclusion benefits everyone, if I still find myself having to explain that yes, they are going together in September, to the same school and possibly the same class and everything... then this topic still has to be addressed.  

So, for November, the theme is INCLUSION.  As always, non-themed disability advocacy posts are welcome.

Add a post.  Tell your friends.  Spread the word.  Inclusion benefits everyone.

This blog hop will be open until midnight, November 23.

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!
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