February is Valentine's month - a time when many of us think about our relationships and how to express our love.  Here on 
"The Road' we've decided to make it a month of discussion around the relationships of our loved one who has Down syndrome.

I know not everyone can listen to two hours of interview - so if you want to hear just the intro's for the team - here they are!  

There will be more "snip-its" to come -  so stay tuned!

I've started using a new internet tool called Scoop It!  It let's you search for news based on keywords and post to a "topic board."  We now have a board for "Adults who have Down syndrome."   I post updates as I find them and you can access the board here.

I'll also provide weekly summaries in case you want to catch up on the weekend.

I'm not a big TV watcher - unless it's on Netflix or Hulu - but I know there is a reality TV show on GAC that I need to see. (Yep - thanks again Mom!)

In the past year, I've gone through all of the five stages of grief.

1. Denial
2. Anger
3. Bargaining
4. Depression
5. Acceptance

I've been thinking a lot about the word "legacy" today.   It seems so incredible to me that we could be talking about Ethan - someone I knew - someone's child, grandchild, nephew, brother - someone the same age as Josh - in terms of his "legacy" already.

I've been scouring the internet to try to find something that made sense to me.  The first thing that jumped out at me was this quote.  

Christian Royal has a gift.  His pottery is beautiful and functional.  It has the hallmark of true artistry, a unique look that expresses what he wants to say about the world around him, his Charleston, SC home.   His passion and attention to detail is obvious in his work which is currently being sold in seven stores near his home and will soon be available on-line.  Christian’s story is one of an artist who is experiencing recognition, respect, and the beginning of a profitable career as a craftsman.  It’s a story that many artists, young and old, would envy: the ability to recognize your gift and use it to create art that people enjoy and want to buy, collect, and share.  Like everyone else, there is more to Christian’s story than what he does for a living.  There’s the story of his family, his geographic location, his hobbies, friends, and life experiences.   There’s also the fact that he happens to have Down syndrome.

This is bound to be a difficult week for the Saylor family. 

I can't imagine how painful it will be to go through Ethan's birthday (January 9th) and the anniversary of his death (January 12th).  

On Thursday we'll be participating in a "virtual toast" to Ethan by using the hashtag #Toast4Ethan on Twitter and everything else we post.  

Won't you join us?

I use this drawing as my "profile picture" on most things that I do under the "Walkersvillemom" name.   It symbolizes the sentiment "I Love Someone Who Has Down Syndrome."

There are LOTS of us out there who do!

So what makes this online community different than the ones that are already out there - lets face it - there are many.  This one is geared toward and focuses on the needs of parents/caregivers who are dealing with adult issues.  There are fewer choices for our specific group, but we need them just as much.  

Our needs are different.  

I have some ideas about what I'd like to see in an online community - but I'm looking for input.  Please feel free to share ideas about what features you think  we should have and what topics you'd like to learn more about / discuss.

Here's a list of the goals I've identified so far:

Plans / Objectives:

• A place to share pictures and videos of our kids without judgment.
• Forums to discuss specific topics of interest with the ability to have ongoing conversations and archived information.
• Access to specialists (doctors, lawyers, policy makers).
• Blogs and stories that pertain to adults.
  
• In depth interviews that allow stories that would not normally be shared to reach a larger audience.
• News on relevant topics.
• Ability to advocate on issues that affect adults with intellectual disabilities.
  

The Philosophy of the community is also a work in progress, but here's what I have so far - feel free to make suggestions here too!

Together we can create a living history that tells the story of a generation of people who have Down syndrome - who were among the first to be "mainstreamed / fully included" in public schools and now have adult lives, concerns, and dreams.  While we do this, we can support each other by learning, sharing, and responding to each other in a way that was not possible when our children were young.