Saturday, March 31, 2012

In the News - March 2012

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

Legend:

AUDIO indicates an audio clip
BLOG indicates a blog post
LINKS indicates links or resource materials
PHOTOS indicates photos
STUDY indicates a study
VIDEO indicates a video

           
BLOGSeeing the Best in Every Child:  The Importance of Neurodiversity

Special Athletes, Fans:  These Olympians get cheers from each part of S.C.

Ending the R-Word: Ban it or understand it?
VIDEO Would You Call My Child a Retard?
BLOG Today is the Day to end the Use of the R-Word

R Word: Spread the Word to End the Word
BLOG Someone is listening--Lets Eliminate the R word

Autism:  Don't Look Now, I'm Trying to Think
BLOG Redefining Normal Every Day
BLOG What is 'Normal' Anyway?
VIDEO Sujeet Desai:  Amazing grace:  Message of Hope

VIDEO
Animal School

BLOG
World Down Syndrome Day is Approaching!
LINKS Down Syndrome - Information on Causes, Care and Resources for Down Syndrome Families


Two Friends with Down Syndrome to Make history by completing the LA marathon


Oldest man with Down syndrome dies in Waseca

Meet Bingham High Schools incredible Prom King
VIDEO World Down Syndrome Day 2012: LET US IN - I WANT TO LEARN
PHOTOS Photos of World Down Syndrome Day (from WDSD Group)

World Down Syndrome Day - March 21

Putting the Spotlight on Down Syndrome

Mum's Map aids Down's parents

Researcher, 17, Conducts Down Syndrome Study
LINKS World Down Syndrome Day

2012 Canadian Down Syndrome Day Heroes
VIDEO 21 Faces of Down Syndrome
BLOG Happy World Down Syndrome Day!
BLOG The Unsung Heroes

VIDEO
World Down Syndrome Day 2012
VIDEO Young Love ::: Down Syndrome Awareness

Curcumin nudges sluggish protein folding

Langdon Down Museum of Learning Disability, in Teddington, to explore history of Down's Syndrome

iPad:  More than a Toy;  A Voice for the Disabled

High School Basketball Player with Down Syndrome Barred from Team as he's too old
VIDEO Glee Star Lauren Potter in New Series!

Perfect Love - Anna-Kay Tomlinson counts her blessings

Banar is Down Syndrome Hero

Governor's Mansion Displays Blue Ribbons for Down Syndrome Awareness

Monica and David Screening and Discussion

Artist born with Down Syndrome exhibits her work at Osceola32

Local Mom writes children's book on raising a child with Down Syndrome
VIDEO Ace Eicher, Girl, Explains Why Brother with Down Syndrome is Just Like Any other Kid



Down Wit Dat was named as About.com's Reader's Choice Best Special Needs Parenting Blog this month:

Favorite Special-Needs Parenting Blog

Readers Respond:  Tell Us What you Love About 'Down Wit Dat'


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

Friday, March 30, 2012

Down Wit Dat: Winner of About.com's Reader's Choice Best Special Needs Parenting Blog

You have to admit, some mornings are better than others.

After another late night with the babies, I awoke this morning to find my phone blinking insistently at me.  "Now what?"  I thought, as I clicked it on, expecting the worst.  What I got instead, was this:

Photobucket
[Enter nonsensical w00ts and squeeing here]

You can imagine how my outlook changed dramatically after that.  :)

I would like to thank each and every one of you that voted for Down Wit Dat.  Tirelessly, without fail, you took the effort every day to vote for our little blog.  Whether you are family, a friend, an online friend, a colleague or a fan, I want you to know how much I appreciate your efforts.  Thank you.

This experience has been like no other.  I've found support in the oddest of places.  I've had backwards walking-down-the-hallway convos at work ("By the way!  I love your blog!  I vote for you every day!") from people that I only smiled at before.  I've been contacted by parents of kids with special needs (other than Down Syndrome).  I've heard from people who don't have children or even know what a blog is.  Advocacy, much like politics, makes some strange bedfellows.

Through this blog, I have met and talked to many people in the special needs community.   We have shared our stories and learned from one another.  We have laughed and cried together.  It has been overwhelming at times,  it has threatened to make my heart burst at others.   I have witnessed the true strength of the human spirit and it has given me hope.  What started out as a little signal fire that I could warm myself by has grown.  Now, I share it with many. 

Once again, I thank you.  I plan to continue to spread awareness and foster inclusion.  I hope you will continue to be there with me. 

Monday, March 26, 2012

All Systems Go, Retro!

There is an ephemeral quality to life these days.  We seem to be showered in milestones.  It appears that every time I turn around, one of the kids is doing something dazzling that makes me stop in amazement.  Our latest accomplishments vary in degrees of success and bravado, but I can assure you that every single one of them has been noted and celebrated.  Like the stars in the sky, they each shine in their own way.

Take Zoe.  In the last two weeks, she has learned to clap and point.  It is adorable.  She has also taken up to five steps unassisted, which is fabulous.  On the "scary" side of things is her strength;  one of her latest tricks is pushing the playpen around.  I'm not talking a little nudge here or there either, as she can go up to the side and propel it across the room effortlessly, much like she would a shopping cart.  Two things happened the first time I witnessed this.  Initially, I stood open mouthed and completely agog.  A few nanoseconds later, that was replaced with "How in the hell am I going to contain her?"

Comparatively, she is mini-hulk.  At a recent weigh in (using our bathroom scale), Zoe is currently 19 lbs which puts her just under the 25th percentile (no change).  Wyatt, weighs 16.3 lbs which puts him up over the 10th percentile (an increase of about 5% -- w00t!).  She is solid. Fricken. Muscle.  Wyatt is also increasing his muscle mass, but at his own speed.

We are really starting to see the results of his hard work.  It gets a little disheartening at times as his learning curve is so much different than hers.  Yes, his "pushing up" is happening almost all the time now and for longer periods; yes, he is rolling all around the room.  Yes, he is sitting for longer periods and when he eventually bowls over, he is starting to naturally correct and roll onto his tummy.  He has also showed us a new trick;  pulling himself forward.  It isn't very graceful and it is only an inch or two maximum, but he can half push, half drag himself forward.

I have been encouraging him to do this for weeks, trying this toy and that one in the hopes of piquing his interest.  We have things that flash, things that reflect, things that rattle, chime and honk.  We have soft things and hard things and things that are fun to chew.  Nada.

You can imagine my delight when I looked over last week and saw him actually doing it!  That moment of squee rapidly dissipated as I realized what he was reaching for.  Hundreds of dollars worth of toys?  Not interesting enough.  A small piece of plastic wrap from a drinking box straw that he could possibly choke to death on?  It's milestone time, baby!

During last week's OT appointment, they asked if we had a kiddie car or the like to try Wyatt on.  I looked up from my laundry in semi-disbelief and pushed over our Radio Flyer Retro Rocket. I love this thing.  We bought it for Quinn for his first birthday and it has sat, unloved, in the garage for a few years.  It has lights that light up and buttons to push.  It has a Space Race/Golden Age male announcer voice that says things like "All Systems Go, Retro!  We're looking good!" and a rather patient female computer voice that informs the child that they are "Now approaching Warp Speed" or "Asteroid ahead".  The best is the countdown;  in the same Phil Hartman meets Buzz Lightyear voice, you hear "3...2...1... BLAST OFF!", at which time all the lights flash and the whole rocket vibrates.  The first time I sat Zoe on it, she looked around, saw the bright buttons and started hitting them at random.  When she hit the countdown and the vibrations started, she promptly freaked out (and has every single time since then).  I was very proud of my little boy as Wyatt sat on the rocket ship (with minimal support at his hips), with his back straight and his hands firmly on the hand grips.  He briefly looked at me in alarm the first time he blasted off, but then looked back down at the twinkling buttons to see what else the thing could do.  He was not disappointed.  Wyatt even got a ride on the rocking horse, which he enjoyed, grinning broadly all the while. 

With the (surprising) burst of warm weather, the kids have spent some time at the park.  I have been unable to go thus far, thanks to my work schedule and my silly insistence on sleeping a few hours a day.  Sean took them to one of the numerous playgrounds near our house, which unfortunately, only has one baby swing.  Zoe had the first turn and was apparently a bit apprehensive until Quinn started pushing her (then it suddenly became fun).  Wyatt, on the other hand, gripped the front of the seat in his chubby fists and giggled maniacally the whole time, hair blowing in the breeze as he zoomed higher and higher (which was probably a full 30° in total, but I'm sure it seemed much more to him).  They also took turns as Daddy held their hands and let them go down the baby slide. I so wish I had been there to see it.  Next time I am going and you can bet that I am taking the camera.

We've had a little progress with Wyatt's eating as well.  Previously I've mentioned that he would pick up a handful of food and then mush it around or just sit with it in his hand.  It's almost as if he forgot that it was there or couldn't deduce that he had to open his hand in order to put it in his mouth.  Since he has had some success with larger objects recently (such as cookies and birthday cupcakes) it got us thinking a bit.  As it was warm, a few days ago I was cutting up some little pieces of watermelon for Zoe.  Instead of chunks, I cut the melon into sticks for Wyatt (like you would carrot sticks).  He easily grasped them and was able to bring them to his mouth and bite off a chunk to chew.  The adaptation only fell apart when he started to shove too much into his mouth and gagged a bit.  However, both he and his sister were able to enjoy a tasty treat on a hot day.  They just did it a little differently.  We've now expanded the self feeding repertoire to include waffles, cookies and pancakes.  I'm hoping that the watermelon model works with sticks of cheese. 

Not so long ago, I asked a group of parents (who have multiples where at least one has DS) if they had a hard time once the "typical" children had very obviously surpassed the "atypical" ones.  How did they handle it?  How did they get through it?  Was it as upsetting as I was anticipating it to be?  The results were vague and lukewarm and I was a little disappointed with the lack of response.  What I realize now is that there wasn't much to report.  It isn't a big deal at all.  Having twins at two different levels of development is just like... having two kids.  Zoe may be babbling and mumbling to herself while toddling/crawling/scooting around the living room while Wyatt giggles while he rolls and inchworms about.  They are just two different little people that do different things.. and locomotion is no exception.

This age is astounding... and it shoots past all too fast.  It is all too easy to let the days blur together and stream by at warp speed until one day you realize they are about to start school.  I choose not to do that.  No matter how hectic or complex our days become, I am steadfast in my resolve to celebrate each and every little triumph.  When your child has Down syndrome, you no longer have the luxury of "expectations".  What we do have are adventures.  Instead of "potential reached" we have "mission accomplished!".  It may not be to infinity and beyond, but we are happy with our own little rocket ride.

All systems go, Retro.  We're lookin' good.

Wednesday, March 21, 2012

Happy World Down Syndrome Day! (and, Welcome to the T-21 Blog Hop! )



Today is World Down Syndrome Day.

Although it has been celebrated for 7 years, this is the first year that it will be recognized by the United Nations.  This date (3-21) was chosen to reflect Trisomy 21, the third or extra copy of the 21st chromosome that causes Down Syndrome.


For our inaugural post of the T-21 Blog Hop, and in honour of World Down Syndrome Day, I chose E for educate (to learn more about the Blog Hop, click here).  For those that don't know or possibly need a refresher, here is a quick synopsis of Down Syndrome or Trisomy 21. 

What is Down Syndrome?

Trisomy 21 or Down Syndrome is a genetic disorder caused by an accident in cell division.  This causes the creation of an extra copy of the 21st chromosome.  There are three different types of Down Syndrome:

Trisomy 21, where there is simply and extra copy of the 21st Chromosome.

Mosaic Down Syndrome where the creation of the extra chromosome happens later, causing some cells in the body to have it and others not.

Translocation, where a piece of the 21st chromosome breaks off and attaches itself to another (usually the 14th) which causes the same symptoms.

The extra genetic material can express itself in a variety of ways, including the stereotypical facial features and heart issues that many individuals experience.


Fast Facts about Down Syndrome:


  • Occurs in Approximately 1:700 births and is the most common chromosomal disorder.
  • Is independent of race, religion, creed, colour, socioeconomic status or nationality
  • Occurs independently of any maternal or paternal activity prior to conception and pregnancy
  • Maternal age can be a factor, although 80% of children with Trisomy 21 are born to woman under 35.  


  • 99% said they loved their son or daughter
  • 97% of parents said they were proud of their son or daughter, 94% of siblings reported being proud of their brother or sister with DS
  • 79% said their lives were made more positive by their son or daughter with DS
  • 88% of siblings felt that they were better people because of their younger sibling with DS

    People with Down Syndrome:

    • Attend school, even post secondary
    • Participate in the major decisions that affect their lives
    • Contribute to society in meaningful and productive ways
    • Flourish with a stimulating home environment, enriched educational programs, positive family support and good health care.

    People with Down Syndrome exist in every culture, every country, every corner of the Earth.  Today we come together to celebrate and spread awareness.  Today we show the world lives of value and of worth. 

    Welcome to my blog hop,  welcome to my global table.  Share your stories of support, motivation, inspiration, love and eduction.  If you do not have a blog of your own, submit your story in the comments below and/or Down Wit Dat's Facebook Page.  We meet under a banner of inclusion to foster acceptance.

    For today at least, the old adage does hold:  SMILE... and the world smiles with you.


    Spread the SMILE!  To add our graphic to your page, copy and paste the following:

    <a href="http://downwitdat.blogspot.com/p/t-21-blog-hop.html" target="_blank"><img src="http://i1113.photobucket.com/albums/k501/Psychojenic/BLOGHOPresize.jpg" border="0" alt="Join Down Wit Dat on the 21st of Every Month!"></a>

    To Enter a URL, click the "Click Here To Enter" Link below the thumbnails.

    --------------------------------

    Don't forget to vote for Down Wit Dat as About.com's Reader's Choice for Special Needs Parenting Blog. You can vote until the end of today using an email address or signing in through Facebook. VOTE HERE. Thanks to all who have participated and good luck to the other finalists! --Jxox
    Related Posts Plugin for WordPress, Blogger...