Tuesday, October 26, 2010

31 for 21: Trying to make a difference

When my boys were both born with Down Syndrome it kind of gave me a kick in the butt to share my story with everyone and to really learn what it means to advocate for my kids.  Because of this I actually bumped into an opportunity a year and a half ago to become the Executive Director of The Arc of Jefferson County.  I was looking to start a support group for parents who had children with Down Syndrome.  I called someone from The Arc and she said "Now why would you want to limit it to just Down Syndrome, as parents of children with special needs we all go through alot of the same things."  That really struck me.  I gave it a thought for a day or two and I couldn't come up with any arguments as to why I would want to limit myself for a support group.  We truly do attend more doctors visits, get our children involved with Early Intervention, introduce them to the world of therapies, stress over things we wouldn't if we had healthy children, worry about the future, learn more acronyms than we would have EVER cared to have known in a lifetime in about two years time, and most of all... we seek out those that have been there-done that and hope they can offer encouragement and support.

I accepted the position of Executive Director and have not looked back.  I am training to be a parent advocate.  To learn the Right and Regulations of parents within the school districts.  I am wrapping my brain around the many many support services there are out there and trying to make note of anything that I think I need to know to offer to someone else.  I am learning more and more about The Arc and their role as being a leading advocacy group in the United States.  I am loving the fact that just by stepping into this position by accident I have a facility already established that I can bring trainings into, hold picnics and playgroups, and help this organization grow.  I don't know just how yet, but the possibilities are there, I'm excited about them, and with God's hand it in I pray that people WILL someday know who The Arc is and what they do.  I'm still learning myself, but I am happy to be a part of them.

I have just recently also joined forces with The Mentor Parent Program, Inc.  I am totally excited about learning about them too.  Things are going well.  I do need to take a breath and make sure that I am not letting my 5 kids childhood slip away from me because I am being to busy with other things.  One mindset, is that I am doing this to improve the lives of our boys.. And the other is being fearful that I won't matter as much in the lives of others like I do in my childrens eyes..  Its a struggle right now, but one that I keep plugging away at until I figure out a schedule that will work for everyone.

I am totally EXCITED that Tom and I are heading to Orlando, Florida to Walt Disney Resort a week  from tomorrow to attend one day of The Arc's National Convention so that we can both learn together more about The Arc and grow together in knowledge.

And to think................if I did not have children with Down Syndrome, I would not be a part of these two amazing organizations now would I??

1 comment:

MaggieMae said...

Isn't it amazing, the doors that have been opened to us b/c of our children? Question: Does your ARC intend to change it's name to exclude the R word? our local AHRC is slowly migrating to another acronym. As it acquires special needs schools and agencies to run it does so under the new acronym. And our state agency changed its name too! Just curious.