At this year’s 321eConference, the founder of Dads Appreciating Down Syndrome (D.A.D.S.), Joe Mears, talked about how his need to be involved with advocacy for his daughter who has Down syndrome led him to create a new venue for service.
In most families, regardless of how they are composed, individuals share responsibility for the success and well-being of the unit as a whole. The work that needs to be done goes much more smoothly if all family members participate, chipping in with tasks they are able to complete. Repetition helps us become more efficient with each job, but we also need to be ready to handle new surprises and changes to our routine in order to survive. When we come up against a particularly difficult assignment, we ask for help within our immediate group first, but sometimes we have to go outside of that group to find answers.
It would be a gross disservice to not include the families who advocate online by sharing their truths as part of the All Together Now collaboration here on The Road. (Of course, you may think we are partial to the blogging cause, as that is what brought us together to begin with - Fair, but not the whole story.)
A question that springs up in advocacy circles is: Why aren’t there more adult self-advocates or families of adults with Down syndrome out there blogging? Sharing their world? Telling their stories? Unfortunately, this lack of voice and presence often is misunderstood to be hiding. You know, the old fleeing equals guilt theory.
Thank you Google for exhibit A – the point above.
Blogging is a new thing. When my son was born and during his young years, I did write a bit about him and me and our story. These were the old days, when journaling was a private affair. If you wanted to go public, it meant writing articles, a slightly different beast, which were hashed out, submitted, fought for print space and so on.
I remember seeing one book on the shelf by a father who had a two year old son with Down syndrome, and with some combination of judging and jealousy I blurted out, “Two Years! How does he have a whole book on this from only two years? (And also, how did he have the time to write and publish it?)”
That’s right kids, books! To quote from The Princess Bride, “Books! That’s what we called TV in those days.” Well, this was the early 90’s and not quite that extreme, but you get the idea.
By: Stephanie Holland
For the next 30 days, we'll be posting every day (except Sundays) about a different group, resource, or advocacy movement. We have lots of guest bloggers lined up to give us an inside look on how
"Together We Can Do So Much!"
Let's Have Some Fun
We made this little kick off video to give you an idea of what to expect this month.
We hope you'll join us!
Life on "the road" of caregiving for adults who have Down syndrome.
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