Monday, December 31, 2012

In the News - December 2012

Every month I compile a list of the stories I post on Down Wit Dat's Facebook page. They are stories of activism, of inclusion, of advocacy, of education, of hope and of love.  These are from the month of December.

Legend:
AUDIOindicates an audio clip
APPEAL indicates an online petition or plea
BLOG indicates a blog post
EVENT indicates a scheduled event
LINKS indicates links or resource materials
PHOTOS indicates photos
STUDY indicates a study
THREAD indicates an online discussion thread
VIDEO indicates a video


Beaufort teen with Down syndrome is transcribing her way through the Bible

Read more here: http://www.islandpacket.com/2012/12/01/2295922/beaufort-teen-with-down-syndrome.html#storylink=cpy

VIDEO

EVENT International Day of Persons with Disabilities, 3 December 2012

VIDEO
Interview: Dr. Brian Skotko (part 1)
VIDEO

The Arc Reacts to the U.S. Senate’s Defeat of the Convention on the Rights of Persons with Disabilities




VIDEO
Creating awareness around Down Syndrome
BLOG
VIDEO
BLOG
BLOG

We’re Not Special Parents
VIDEO

BLOG
BLOG
Erma Bombeck: Special Mothers



EXCLUSIVE: Compulsory abortion for Down’s syndrome foetuses, says UKIP Kent candidate





BLOG
VIDEO
BLOG
My Son Has Autism. Please Don’t Be Afraid.
VIDEO
Commercial Features Down syndrome Child



Charity52 Releases Limited Edition “Achieve” T-Shirt with Down Syndrome Association of Central Texas

Is this the last U.S family to adopt a baby from Russia? Utah couple welcome Down syndrome girl just days before Putin bans American 'baby trade' forever

Homecoming couple continue to inspire






We had our tenth and sadly final, T-21 Blog Hop on December 21.  I'd like to thank all those that have participated this month and in months gone past.  Perhaps we will revisit this feature sometime in the future. 

Our Facebook page is well on it's way to reach over 1000 fans! Welcome to all our new friends. Please share!

Don't forget our Facebook Group!  Down Wit Dat - The Group is an all inclusive special needs discussion forum.  Join the conversation!

I'm looking forward to judging December's Photo Theme "Holidays Around the World".  Results to be posted later on Down Wit Dat's Facebook page. January's Theme to be announced at the same time. 

...And that's the news.  Keep the stories and information coming!  See you in 2013!

Sunday, December 30, 2012

Silent Sunday - Winter Wonderland

I'm not sure if I like this... OOH!  IT'S EVERYWHERE!
Even over there! That smile disappeared a few seconds later when his hand hit the snow.

Snowy twins
All three.

Friday, December 21, 2012

Share the Light

If you're reading this, it means the world hasn't ended.

(Not so) Whew.

You wouldn't know that from around here as it seems this house has already been hit by the ten plagues.  I'm hoping that we have seen the end of it as we've pretty much cleaned out all the baby Tylenol in our area.  Twice.

In my last sick post, Boogie Wonderland, I talked about battling the Martian Death cough.  We did eventually get over that and my post-bronchitis cough was receding.  We even got out of the house twice:  the first outing was with ICDSP and the second at a friends house where we met their newest arrival.  We had to leave the last one early as Wyatt spiked a fever and started sporting the green walrus look again.

By the next night, in the middle of my shift, I started to feel crappy again.  It started with a few sneezes and by 0730 I was a sore, choking, feverish mess. I had managed to acquire, after being off antibiotics for only a few days, a nasty sinus, throat and ear infection.  So nasty that even a gram of acetaminophen only took the edge off my fever/pain. The doc prescribed some serious antibiotics this time;  they are of a particularly nasty variety with a list of side effects as long as your arm.  I was also less than enthusiastic [read:  beside myself] when I went back the clinic with the rest of the family the very next day.

Sean and Wyatt went on (different) antibiotics as well; poor Wy got an added insult with a separate eye ointment .  We were a coughing, hacking sputtering lot with this bug, dubbed Boogie Wonderland 2:  Expectorate Boogaloo.  After a week of Tylenol, meds and narcoleptic fits (yes, really), I'm happy to say that we are almost back to health.

Through a series of tragic events that also happened within this time (and shall not be recaptured here), it became apparent to me that despite everything, I have a lot to be grateful for.   Yes, we were all very ill,  Wyatt and I especially.  However, as I initially grumbled to myself while picking up yet another prescription on Friday afternoon, it occurred to me that I should be grateful for many things.  I was thankful that I was in the position to afford my prescriptions and even more so for having a job with benefits that covered all of them completely.  I was grateful that my son did not become more ill, as those with T-21 tend to... I was appreciative of the fact that all my children were very much alive and snuggled in my arms at various points throughout that evening.  The last one especially.

Ahh, the kids... so full of light and magic as of late.  All are quickly developing into the people that they are going to be.  Zoe's speech is improving daily;  she can count to ten and you can understand more and more every day.  Wyatt is working on standing;  my little boy stood with his worker the other day, holding onto the table and otherwise unsupported for quite some time.  He has popped a few more teeth this week which opens up a whole new world of chewing and dietary additions.  My eldest, Quinn, is continuing to demonstrate a dazzling intellect, a pointed wit and a deep appreciation for art, music and the creative process.  And science.  Don't forget that.  He only mentions it eleventy-bazillion times a day.

I had started my Inspiration post before I was sick and it lay untouched and unfinished for days.  I was both physically sick and heartsick.  During that time, it felt like the sun had been taken out of the sky.  That hope had been lost.  Although we were all still throwing apocalypse jokes around, it seemed that it really was the end of civilization as we know it.  In a whirlwind of violence and hatred and spin and pain and anger... there seemed to be only darkness.  And fear.  

There was also my gratitude, lets not forget that.

This time of year has been special since time immemorial.  People have lights their houses, they light a menorah, a tree, candles, even a Yule log.  We do this, fundamentally to banish the dark.  In (one of) my personal traditions, on the solstice we welcome back the sun.  As of today, the days are officially getting longer.  Spring is coming.  Hope is reborn.

With everything seemingly gone to hell in a handbasket, I needed a little of that light early.  I had been inspired by a wonderful group of parents (and their equally wonderful children) the week before.  Armed with this, and knowing that so many were feeling some of the same things I were, I encouraged folks to bring some light, some hope, some good tidings to my Facebook Page.  I started an album for pictures and for lack of a better title called it "Share the Light".  As people shared their interpretation of "light" (a candle, an angel, a sunrise/sunset, an inspirational saying, the smile on a child's face), I shared them back.  A few of my friends picked up on it and started filling their newsfeeds, not with tragedy and spin and speculation and anger, but with light.  And love.  And hope.

I went to bed that night feeling much better.  I know more than few more people felt that way too.

The past (almost) two years have taught me a lot about human nature, especially my own and my place in a vast thundering herd of humanity.  We are all prone to sadness and in these times of uncertainty and loss, well, it's easy to be overcome by darkness when fed only fear and ignorance.

"Share the light" is a pretty good metaphor for a lot of things.  The seeking out and sharing up to date, factual information. The encouragement of ideas and creativity.  The lifting up of anothers spirits, for no other reason than it's the right thing to do.  To be kind.  To provide warmth and shelter and sustenance to those that have not, whether that be physically or spiritually.  I'm not perfect and neither are any of you...  But, there has to be something to all of this if most of the world's major religions are based on it.

I am grateful for what I have.  My job, my family, my friends, my abilities, my me-ness. I am thankful for those in my life, for good or bad, for it is through others that we learn. With this, I think I will be leaving this particular album up and adding to it now and again.  We all need light, especially these days.  Today, since the world didn't end or anything, why don't you share a little?  Do something nice, do something positive.  Give a little of the flame that is you;  you don't know how far it will go or how much warmth it might mean to someone.

Merry Christmas, Happy Hanukkah, Joyous Kwanzaa, Blessed Yule.  Happy Holidays to you and yours.  May your home be filled with love and laughter. 

Share the Light.

My thanks to my good friend S., who shared this poignant quote from Albert Schweitzer with me,
in a moment when I truly needed it.  xox


Join us one last time for the T-21 Blog hop.  Due to lack of interest I will be probably discontinuing this event in the new year.  Let me know your thoughts.

Join Down Wit Dat on the 21st of Every Month!

Tuesday, December 18, 2012

Inspiration

“There are, it seems, two muses: the Muse of Inspiration, who gives us inarticulate visions and desires, and the Muse of Realization, who returns again and again to say "It is yet more difficult than you thought." This is the muse of form. It may be then that form serves us best when it works as an obstruction, to baffle us and deflect our intended course. It may be that when we no longer know what to do, we have come to our real work and when we no longer know which way to go, we have begun our real journey. The mind that is not baffled is not employed. The impeded stream is the one that sings.”― Wendell Berry 

Give and take, ebb and flow... these are principles that I have had to learn to live by.  It's hard to maintain at times, to be the one that forgives when others have slighted, to be the one that overcomes instead of succumbs.  Sometimes you are on the receiving end of things, sometimes you give back.  It's about as fair and balanced as life gets.  There are times when you feel low and then a little spark will reignite your drive.  Inspiration is like this too... sometimes you can breathe life into ideas or others and sometimes others give that precious gift back to you.

I recently found myself in a position of both.  We were invited to and attended a gathering by ICDSP.  The organization had arranged for a two guest speakers, Sukaina and Abbas, a mother and her now adult son with Down syndrome.  Abbas is a graduate of the program that Wyatt is in.  We haven't attended many of these things, simply due to timing and logistics;  carting the twins and Quinn around is not always easily accomplished, especially around dinner time when they are most likely to be cranky.  This day, however, was scheduled for late on a Saturday afternoon. In Loganspeak, this was do-able.  Despite my (now) quasi-substantial online presence, we have not gone to a lot of local functions to network, a point that we need to remedy. 

We ambled in, all five of us, and found ourselves in a room of parents, mostly with infant children with DS.  There weren't any from our former group there yet;  most of the kids were much younger than the twins.  We found a spot where we could put the kids down on the mat and still keep our luggage out of the way.  Zoe naturally started to roam while Wyatt was content to sit and take everything in. I sat crosslegged with Wyatt while Sean ran down the hall after our daughter and Quinn found a quiet corner to draw.  The leaders remembered us and we chatted a bit, catching up on what had transpired since our group sessions had ended.  I was asked about my blog (their blocking software will not allow viewing it at work) and I filled them in on a couple of distinctions that I had won.  I was surprised to hear that they were handing out Down Wit Dat's URL as a resource, a compliment that I found myself almost speechless for.  Perhaps it is the personal connection, I'm not sure, but I was deeply touched by this.

Not long afterwards, I found myself staring into the eyes of a curious little girl.  They were seated not far from us on the mat and her mother had overheard one of the leaders mention my blog.  After eying my twins, the Mom asked about it.  Her eyes lit up when I told her; she said "I thought so!  I read your blog!".  At my look of surprise, she continued on to tell me how I had helped her and that she found my words both inspiring and comforting.

I fumbled through my thanks and paid attention to her darling little daughter who was quite taken with me (and the necklace I was wearing).  So much so that when I stood up to go talk to another parent later on, the little one began to wail.  Her mother joked "She doesn't even do that for me!".  I made sure I gave her a cuddle or two.  I'm sure we will meet again.

Within minutes, another mother slid closer on the mat and mentioned that she too had read my blog and found it quite helpful.  Again, I mumbled a thank you (blame it on the night shift I had worked the night before) and we talked about our children.  I was humbled, but pleased that these parents too had found use in these words.  Before I left that day, I met another mother with twins, who had actually taken the time to contact me.  However, I had not received her letter and made sure that all three parents had my personal email account before I left (as well as the Facebook group and the Facebook page).  I had gone to mingle and educate myself and through that hopefully shrug off the blues that I had been feeling.  I got to mingle, that is true.  However I also found myself validated, encouraged, humbled, yet buoyed by the experience.  There have been times when I have questioned the validity and the rationale of doing what I do.  Thanks to these parents who took the time to personally thank me, to tell me of their experience as new parents of a child with Down syndrome and how my words eased that early transition and gave balm to their wounds, I found my drive again.  Seeing them interact easily with their children, the happiness on everyone's face, the comfort they had talking about this nuance or that one was sublime.  Knowing that I had contributed to this a tiny bit filled me with happiness.  I had inspired them and they had given me back a much needed spark. For that, I will be eternally grateful.

As these things go, after an initial meet and greet (and as the kids played around us), it was time for our guest speakers.  Sukaina quickly outlined her experience as a new parent 20 years ago.  She was told that her son may not walk, would not talk, would not amount to much of anything.  He would be very loving however and "hug everyone he meets".  As she was speaking, there was something about her posture, in her eyes that I recognized all too well.  Defiance, mingled with the all powerful protective instincts of a devoted mother.  She continued to say that she made up her mind at that moment that her son would walk, would talk and that he would NOT hug everyone he met.  He would shake their hand, greeting people cordially and respectfully, just like everyone else.  I could see her pain as she spoke.  It awakened my own.  Although all of this occurred 20 years ago for her and almost two years ago for me, the agony of it was still close at hand for both of us.

Abbas did grow to walk and talk and does in fact, shake your hand when you speak to him.  He did not address the group himself as he was a bit shy but was more than willing to speak to people one on one.  He has accomplished in his life far more than the average young adult.  One by one Sukaina pulled out awards and medals that Abbas had won in the Special Olympics.  He has been recognized by his community and by his country, being a recipient of the Government of Canada's Queen Elizabeth II Diamond Jubilee Award.  He is currently applying to college programs.  He continues to help out with the Special Olympics, coaching and inspiring kids.  I casually spoke to him later and he told me that he felt he didn't have "special needs" any more as he was an adult.  It was the young ones who needed the help now, he felt, and he was more than happy to give it back.  It was hard to keep my eyes from filling up as we spoke;  this was a young man that any mother would be proud of.  Full of light and laughter, but also possessing a practical approach to the world.  "My parents are y'know, getting old..." Abbas mentioned at one point, "... I have to do things on my own.  They won't be here forever".  I nodded in agreement as he outlined his eventual plans for school, for living on his own.  Plans which his mother confirmed to be very true much later.  We chatted easily about things, he and I;  Abbas' take on things was pretty much what you would expect from a 20 year old, eager to explore adulthood.  I enjoyed our short conversation very much.

I broke down while talking to Sukaina.  She saw it long before it happened, her eyes expertly reading mine.  I thanked her for taking the time to speak to us as we need to know what has come before.  I told her that I thought that this generation had it a little easier, although we still have light years to go.  She nodded sympathetically and seemed genuinely interested in my little efforts and gave me some sage advice about believing in ourselves and our child.  "Yes, exactly", I thought at the time, as her words, the voice of experience  soothed my doubts, my fears.  I hope our paths cross again.  We are in this special club together, as were all the parents in the room.  What I took away from our conversation rekindled my passion for my work here.  I hope she understands even a fragment of how grateful I am that we met.

The ideas, the stories, the articles, the pages, the branching out into social media... these are all work.  Although it is a subject that is dear to my heart and can be (and is) often lighthearted, it remains, well, work.  The words, sadly, do not flow effortlessly from my fingers.  Having found my desire to continue this work again, through the words of others, has been indescribably powerful.  Perhaps Mr. Berry had it right as it is the things that challenge us the most that have the most worth.  We're pretty close, the Muse of Form and I... Thankfully the universe throws people like Sukaina and Abass into my path now and again, to fill my sails anew with the determination to make this world a better place for my son.  Life is often full of obstacles and baffles us with it's complexity.  I can say, with much gratitude, that I have my family and all of you to inspire me and help me keep this course, no matter what twists, turns and rough waters may lie ahead.

Saturday, December 1, 2012

In the News - November 2012

Every month I compile a list of the stories I post on Down Wit Dat's Facebook page. They are stories of activism, of inclusion, of advocacy, of education, of hope and of love.  These are from the month of November.

Legend:
AUDIOindicates an audio clip
APPEAL indicates an online petition or plea
BLOG indicates a blog post
EVENT indicates a scheduled event
LINKS indicates links or resource materials
PHOTOS indicates photos
STUDY indicates a study
THREAD indicates an online discussion thread
VIDEO indicates a video

BLOG
Happy National Down syndrome Awareness Week!
BLOG

VIDEO

Down Syndrome Association makes strides in Sudbury
STUDY

Talking about Down syndrome
VIDEO

Orange, state lag in mainstreaming disabled students


VIDEO
EXCLUSIVE: M&S unveil Christmas TV ad with a little help from the man behind Beyonce's Single Ladies video and the adorable Seb White (with not a celeb in sight!)


Extra Chromosome 21 Removed from Down Syndrome Cell Line
BLOG
Lest We Forget

VIDEO

Would you "change" your child with Down syndrome?
EVENT
VIDEO

VIDEOMugged By Sound, Rescued By A Waitress
BLOG
VIDEO
BLOG Don't Label People with Down syndrome
VIDEO


EVENT

BLOG


Disabled Boy’s Family Faces $500 Daily Fine Over A Therapy Pet Pig

Actors with Down syndrome in more films, TV; 'Glee' star Lauren Potter says 'we're just like anybody else'
VIDEO
BLOG
Downs Side Up Voted Top Blog

Disabled parents face bias, loss of kids

Rude content

Living with Down Syndrome
VIDEO
VIDEO
BLOG Boogie Wonderland

BLOG Marks & Spencer exploits vulnerable children for profit this Christmas!


Equip for Equality Victory Allows Kindergartner to Remain in Her Neighborhood School


Becoming a champion! and rocking his extra chromosome!

Lakeside homecoming queen with Downs syndrome to make TV debut
BLOG Why I'm Not a Fan of "Tard" the "Grumpy Cat"


We had our ninth T-21 Blog Hop on November 21. Join us for three days of excellent blogging on November 21! 

Our Facebook page has reached over 900 fans! Welcome to all our new friends. Please share!

Don't forget our Facebook Group!  Down Wit Dat - The Group is an all inclusive special needs discussion forum.  Join the conversation!

I'm looking forward to judging November's Photo Theme "Thankful" Results to be posted lateron Down Wit Dat's Facebook page. December's Theme to be announced at the same time.

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

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