The Road We've Shared

Originally posted 5/14/14 – Updated 6/13/14

Some of you may have noticed that we’ve been fundraising lately and wondered why.  Since we’re a very new group, I thought I should take a moment and explain exactly what’s going on to those of you who have been with us so far, and any new people that might see our pleas for help.

We’ve also been involved in spreading the word about #JusticeForEthan and raising awareness via World Down Syndrome Day and the A to Z Blogging Challenge.  Most of all, we’ve been building connections with other parents.  One of our main missions on “The Road” is sharing our personal stories in an environment that is accepting and understanding of individual choice.  We all have different perspectives and by voicing our opinions we can learn from each other.  

There are already several national support groups for Down syndrome out there – so why do we think we need to add to the list?  We here on The Road feel that our specific needs are sometimes overlooked by the bigger groups.  We understand that “the Nationals” have their hands full with what they each do well and that work is important.  We also believe that as caregivers, our experience and knowledge matters.  Stories are important tools.  They allow us not only to share our experience with each other and to pass that experience on to parents with younger children who have just started their journey – but they also provide a way to record our history.  We’ve got a unique place in the narrative – the first generation to be “included” in schools and now facing the new challenges of living longer and expecting to be “included” as adults in the community.

The members of the team are all volunteers.  We’re “Moms on a Mission,” dedicated to a cause we believe in.  We’re just starting to get organized and get the word out.  This all started as a direct result of #JusticeForEthan and the grassroots advocacy that grew out of tragedy.  Connections were created, support was organic, the voices multiplied, and friendships were formed.  However, we also realized that there was no structure behind our efforts.  We were each doing what we could in our own sphere of influence.  Together, we can do so much more, but how do we reach each other?  Many parents of older individuals are not familiar with social media.  They may use it occasionally, or be completely “unplugged.”  So how do we connect with those people and add their voices to the story?  One answer may be to spread the word at the already established national conventions.  

I’m not one who is comfortable asking for help.  I’m not a salesperson.  I do, however, have a strong calling to make this group a success and help as many people as possible.   We’re not wealthy.  We, like many families caring for adults with developmental or intellectual disabilities, rely on government programs to make ends meet since I left work to stay at home with Josh.  There are two sides to this reality as I see it.  1) It gives me the insight necessary to understand the situation first hand of those on the margins – those whose lives depend on society caring enough to support finding better programs and solutions. 2) It makes it hard to promote and grow any type of venture that requires money.   I can write, talk, and share till the cows come home, but finding money for travel expenses and infrastructure is difficult.

If you believe in our cause, and would like to support our efforts, please consider donating to our FundRazr account. 

In case you want to learn more about how we feel and why we are advocating for More Choices, check out posts by each of our team members on the subject:  Stephanie, Karen, and Mardra.