Category Archives: WDSD

Responding To The Community – Born This Way at the 321 eConference

When Born This Way aired on the A&E Network, it prompted mixed emotions from the Down syndrome parent community.  Strong emotions. I pondered long and hard about why those emotions came to the surface, and how we could help bridge the gap between parents who loved the series for the awareness it provided and those who experienced a level of grief because of what they saw. The “Born This Way – Building Support Systems Track” is a result of that search.

Continue reading Responding To The Community – Born This Way at the 321 eConference

Giving back on #WDSD15

World Down Syndrome Day 2015 on The Road We've Shared

World Down Syndrome Day 2015
This year, we’re changing the focus a bit on March 21st.  For the 10th anniversary of this special day, we here at The Road are participating with seven other Down syndrome groups who created the “Random Acts of Kindness” campaign.

[For more about the event, check out thearticle on Huffington Post from the chairman of IDSC – Beth Sullivan]

The goal of the event is to raise awareness about Down syndrome while spreading the love and good cheer that comes with giving to others. Since our specific mission is to support adults who have Down syndrome and their caregivers, we’ve decided to offer a friendly challenge to all those participating in the R.A.K. event:

Continue reading Giving back on #WDSD15

Random Acts of Kindness

Picture

This year, we’ll be celebrating World Down Syndrome Day on March 21st (3-21) with the seven national Down syndrome organizations by completing random acts of kindness.

We’ve started a list of possibilities that our adults who have Down syndrome can do.

Picture

You can see the list on Pinterest or on List.ly

Continue reading Random Acts of Kindness

This Kind of Love – IDSC WDSD2014 Blog Hop

THIS KIND OF LOVE…


Josh's beginning on The Road We've Shared

One of our very first pictures together…. never before (and never again) published
Football buddies on The Road We've Shared

Yeah, we’re Maryland born and raised. “Team mates” from the very start.

STARTS AT FIRST SIGHT!


This kind of love…

Picture

My graduation from Middle Tennessee State University

Josh's graduation on The Road We've Shared

Josh’s graduation from Governor Thomas Johnson High School

celebrates each other!


THIS KIND OF LOVE…

Josh and his

One of Josh’s dates for the prom.
Josh and his mom on The Road We've Shared

At a church family gathering.

lets you shine in a crowd!


This kind of love…

Josh and his mom being Goofy on The Road We've Shared

Bein’ Goofy at Disney World
Santa and his Elf on The Road We've Shared

Santa and his Elf

Accepts you for who you are (No matter how Goofy)!


This kind of love…

Walkersvillemom and her partner on The Road We've Shared

US! “A team,” “Partners,” “Family” – all words we use to describe the incredible bond we share.
Team Josh on The Road We've Shared

Team Josh – tired but happy!

makes me who I am, 
a better person than i would be alone!

Why I write – or – my WDSD Hangover

In preparation for our 321 eConference session yesterday, “Finding Support via Social Media – Blogging and Internet Communities” – I did a lot of thinking about WHY I choose to share my story on various social media outlets.  
In the 45-minute session, we had a lot to cover, and team member Mardra actually VOLUNTEERED to drive!  (Love her!) Sidebar – you know you’re in the right place, on the right path, when the members of your team each have a great resume of specific talents that are different from yours but at the same time they really GET you and you talk together like you’ve known each other FOREVER!  I am grateful every day that I found them and that they can put up with my shenanigans.

ANYWAY – Mardra prepared a fantastic presentation and asked Karen and I specific questions in order to prepare us.  One of those was:

Why do you choose to share on-line?

followed by:

Why is it important specifically for advocates and people involved within the DS community to share their stories publicly?

I managed to come up with “bullet point” or “Twitterized” versions of my answers to those questions for the purpose of the session, but I feel like I didn’t really explain my perspective in terms of some of the recent controversies swirling around in our community.

Many hats of community building

If you’ve been following our blogs here on “The Road” you’ll know that we each have a different “voice” – even when we’re talking about the same things.  Karen is our “Social Ambassador” – she’s the super friendly, outgoing one.  She is the one everybody wants to be friends with – and the Facebook Queen.

Mardra is our “Organized Story Teller” – she’s a phenomenal juggler – with lots of projects and she still finds time to keep us on track.  She is the real writer of the team and knows the blogging world.    She’s my voice of reason and has a wicked sense of humor that I can totally relate to!

So what do I add????   


Hmmm……  


well….  
I’m the one with the big ideas, sometimes too big.  (right Mardra and Karen?)  I’m also the research / technology geek, and the one with time on my hands to work on learning new technology, find the articles, and think about “what’s next.”   
I’m also a firm believer in “social history.”   

Which brings me back to the purpose of this post.

This is Josh – enjoying himself in the park – acting silly – having fun – and loving the fact that I was taking lots of pictures of him that day.

The FEEL Good Stories and the Need for Action Stories

There’s been an ongoing discussion in the Ds community about things like “awareness vs. advocacy” and the use of “inspiration porn” or conversation starters like “odd socks” to raise awareness.   One school of thought is that by saturating the media with “cuteness” we ignore the reality and fail to actually change minds or create action towards increased social justice.

Okay –  I hear that and understand where it comes from.  

But….

In my humble opinion (and this is the GREAT thing about the internet, we can all freely express our own perspective) I think we need to talk about all the aspects of our lived experience.   We have to say – “Hey!  I have a kid who I’m proud of.”  ”Hey!  I was touched when the other kids at my daughter’s school voted for her to be prom queen!”  ”Hey!  LOOK!  My son made the winning basket in the game and other people cheered!”

Are we expecting it to create immediate change –  well no….  But we’ve been on the other end too.   We know what it’s like NOT to have those moments.  If I want to celebrate with someone else who does get to have them, I will.  I’m sorry if you think it’s detrimental to “the cause.”

I also tend to look at things from the lens of “social history.”   What I mean by that is this:

Everyday stories and experiences of life as we know it, when taken as a whole, tell others what it’s like to be us.   

In another session this weekend I saw a timeline that showed when some of the important pieces of disability legislation were passed.  It really caught me off guard to see – all together – what has been done since my son was born in 1987.  For instance – the ADA was passed when he was three.   I can remember thinking then – this is going to change things SO much!   Then it occurred to me…..   What about the people who have kids under say, 10?

For them, it’s a completely different view.   The ADA has always been there.  IDEA has always been there…   That may play a big part in why we see the happy, inspirational stories differently.  (Maybe not, but it just might make our perspectives a bit different)  Another thought I had was about how I look at stories about parents who were pressured into institutionalizing their children as part of our social history.  It’s not ancient history – it’s not even two generations ago.   So for those parents, the “feel good” stories are something that they could not have imagined when their child was born.   And already we’re saying that we need to stop telling them?  Change happens slowly, maybe some day we won’t feel the need for cute, inspirational stories, but for now, I think, they serve an important need in our society.

Balance

So to answer the question why do I write – it’s to provide balance – to talk about the good, the bad, and the mundane.   It’s also to add my 2 cents to the social history narrative.   I write what it’s been like for me.  What I find interesting.  What’s going on in my head.  I share what I find interesting, and comment according to my perspective.  I also try to give Josh an outlet for his own voice.   I write about things he tells me in his own words.  I ask him if I can post his pictures on the internet for his “fans.” 

Most importantly with “The Road We’ve Shared” we’ve started creating a space where other parents of adults, who share the same “social history” can tell their story.  Adults who have Ds are living twice as long as those who came before us (Caucasian adults at least, but that’s another series of posts).   Our children were born during a unique period in history.  We have a completely new narrative to write.  What’s it like to deal with adult issues and aging?  I for one don’t want to leave that history to others to write for us – no one perspective can accurately paint a complete picture. Together we can create a rich tapestry of different aspects of the journey.  I want to include many voices and perspectives about what it’s been like for us so that the next generations can look back and hopefully say - 


“Hey! Look what it was like for them! Things sure are different now!”

Add Your Perspective

We’re always looking for more stories!  If you have a particular story (or a bunch) you’d like to share we’d love to hear it!  There are lots of different ways to share with us here on The Road.  Email us, join the discussion forums, share a video, or write a blog post.   The more the merrier – and the more complete social history we’ll create together!

The United Nations on WDSD14

Health and wellbeing – Access and equality for all on the occasion of World Down Syndrome Day

For those of us on The Road, WDSD was…  hectic to say the least.   Hectic in a GOOD way!  I didn’t want the month to end without talking a little bit about the UN panel discussion on health.  
If you missed the presentation, you can watch it via download.  It’s four hours of great speakers talking about – as you would expect, health care and access around the world.  

I was personally excited to see that one of Josh’s doctors from when we lived in Maryland was speaking.  Dr. George Capone from the Kennedy Kreiger Institute Down syndrome Clinic in Baltimore, MD is one of my personal heroes.

He talked about guidelines that exist for newborns, and for children.   These guidelines are published by the American Academy of Pediatrics.  Dr. Capone mentioned that they were developed in 1994 and revised in 2001 and 2011.  They apparently try to update them regularly.

The only thing is – they stop at age 21.

“For adults, we don’t have such guidelines in place.  This is an area where we need to put more thought and planning into this – after all, most people living with Down syndrome are adults.” – Dr. George Capone

Add to this the fact that adults with Down syndrome age faster than “typical” adults and the issue becomes even more complicated.

“age related issues are accelerated in this population” “when aging actually begins is a good question”…  - Dr. George Capone

True Professionals

It was an emotional presentation for me to watch.   For one, here’s a man that literally saved my sanity when Josh was a baby – talking about things that applied to us NOW as adults.  (More about that on my Walkersvillemom blog – which is being moved/updated as we speak).  

Also – I’ve started worrying about how we’ll address the medical issues of aging without having access to any specialists where we are.  I never really took the time to think about “aging” as another phase in our lives where we would need to seek out specialists……

I’m hoping that this means Dr. Capone and his fabulous clinic will extend their services to older adults! 

Four full hours of information

If you don’t have time to listen to the whole recording – Dr. Capone was just one of MANY informative speeches given that day – his 15 minutes starts at 1:45 on the “tape.”   He also had hand-outs that you can access here.

To the great self-advocates that spoke – THANK YOU!   It was fabulous to see young adults actively involved in such an important presentation on an important day!

WORLD DOWN SYNDROME DAY 2014

We hope you all enjoy the video tribute we put together of all our friends on this special day.  Disclaimer:  All of these pictures were shared with us on Josh’s Facebook page and because we have sooooo many friends, the video is just a bit over ELEVEN MINUTES LONG!  🙂

Although WE, Josh’s family, celebrates Down syndrome 365 days a year, today is a special day to recognize everyone as a group. 

We are creating awareness that people with developmental and intellectual disabilities can lead happy, fulfilling lives surrounded by family, friends, classmates, and coworkers. 

All of us at Just Joshin’ Ya truly believe that by creating awareness, just by doing your thing day to day, it really does lead to acceptance for individuals with DD/ID.  We are strong believers that creating awareness leads to acceptance, which ultimately leads to inclusion! 

We’re working hard and making great strides!  Keep on keepin’ on!  We send all of you lots of LOVE today and every day!

Without further adieu:  Here is the video! 

21 for 3/21 (WDSD 2014)

It’s a GREAT day!

Today has been so exciting and energizing!  I’ve participated in the 321 eConference, and listened to Dr. Capone address the United Nations !  I’ve only begun to look through all the fabulous pictures and blog posts celebrating “designer genes” that have been shared online.  Josh and I have danced to “I’m Happy” several times already today.  And it’s only just begun!

How COOL is that!

Josh helped pick out these pictures and was “too proud with me” about sharing them for WDSD.  He kept saying – “Look at us!”  with a big ol’ grin on his face.   

Indeed – look at us!   The road may not have been easy, and hopefully there’s a lot more to it!  We’ll keep working and sharing, not just for our family and friends, but for anyone who will listen.  We love each other – we’re happy – and we’re grateful for the friends we’ve made along the way!

Happy World Down Syndrome Day!  #WDSD14