The Hailey Herald

The Hailey Herald

Wednesday, October 29, 2014

Invaluable Resource

I've spoken all month about Down syndrome, about Hailey and about our life.  I can't leave out a very important resource that exists in our life...the Down Syndrome Association of Greater Cincinnati (DSAGC).  Our association serves 12 counties and approximately 1,400 individuals with Down syndrome and their families.  They serve all ages from a prenatal diagnosis to people in their late 60s.  It was established in 1981 by a group of parents that envisioned a better community for their children.  The DSAGC hosts the largest Buddy Walk in the country with over 11,000 participants.

Their mission is to empower individuals, educate families, enhance communities and together, celebrate the extraordinary lives of people with Down syndrome.  This mission starts with the first day contact is made.  We had put Hailey's Ds on the back burner for the first few months.  I did research on the internet and spoke via email with several people that I had never met and a good friend from high school who has a little girl with Ds.  It was easier to contact this way and we had bigger issues to on hand.  Hailey's heart defect and impending open heart surgery took precedence over her having Down syndrome.  I contacted DSAGC shortly after and the early matters coordinator came to our house to meet Hailey.  I met with her for an hour or so.  It is fantastic to have someone who knows about Ds "oooh and aaaah" of your baby.  I think she could have stayed holding Hailey all day!

There are so many events and opportunities available through the DSAGC.  Some programs are divided into age of the person with Ds...early matters (birth to age 5), school age, and adult matters.  Some of the activities that have been available to Hailey are monthly sign language class and physical therapy.  She is now old enough to go to Dramakinetics and music therapy.  Along with educational opportunities, there are also social gatherings annual...spring fling, summer ice cream social and a harvest party.  There are similar events and educational sessions with the school age group, along with workshops to help us navigate through the world of Hailey's education.  I do not know much about the adult matters group, but I know that as Hailey gets older, I will be checking all of the opportunities that exist there.  I have only heard positive comments about all of it.

These groups are available to families and individuals with Ds in the entire 12 county area.   However, in order to serve such a large area, community groups have been formed to meet the varied and unique needs of our community.  These groups include community groups based on geography, DADS, extended family, Ds plus (a diagnosis of Ds along with another diagnosis), single parents, African American family network, Hispanic community group, social groups (for individuals with Ds 16 years and older) and birth year groups (like the 2011 extraordinaries).  We fall into a geographic community group that I attend monthly mom's night out, coffee chats, playdates, etc.  It is nice to get to know families in my local area.  We are also active with the 2011 group.  These families are dealing with the same obstacles and celebrating similar milestones at the same time as us.

There are two events that we attend annually that encompasses the entire group.  One is the annual holiday party which is right around the corner.  Last year, Hailey visited Santa about 20 times!  The boys love the crafts and Hailey loves the music and the attention she gets from the volunteers.  Mommy loves that the volunteers chase after Hailey so I can have adult conversations!  We also participate in the Buddy Walk.  The funds raised through the Buddy Walk provides about 50% of the needed resources to help the DSAGC fulfill its mission.  There are other events, but for some reason, these are the only two our schedule seems to allow.

The DSAGC isn't only about social functions and social networking.  They have a fantastic health outreach program that provides accurate health care information to our local hospitals, clinics, doctors, nurses and midwives.  They also have a board of medical professionals that sit on an advisory board to keep all of the medical information up-to-date.

The last information I would like to share about the DSAGC is the National Down Syndrome Adoption Network (NDSAN).   This network is funded through the DSAGC.  It provides information to birth families who are seeking an alternative to parenting a child with Ds.  The NDSAN also provides support to families who wish to adopt a child with Ds.  There are no fees for any of the services they provide.  Their mission is such a beautiful ensure that every child born with Down syndrome has the opportunity to grow up in a loving family.

I'm sorry if I bored you with a very lengthy post about our local association, but we have a very active...very present association.  It is such a fantastic resource and partner to all of the families with a loved one with Down syndrome.  I honestly don't know how difficult some of the relationships we have established would have been without the DSAGC.  It has made our life so much fuller and balanced because of the support system they have helped us put in place.  I am thankful that we have such a fantastic resource in our area.  I am grateful for the dedicated staff they have.  I love the passion they show about their jobs and I appreciate all their hard work and support!!

No...these pictures have nothing to do with the DSAGC except that this little girl is fortunate to have them in her life (and the pictures are so cute that they need looked at again).

For more information about the DSAGC...visit their website at


  1. I'm glad you talked about your local chapter. Ours is paltry in my opinion. I think the leadership is stale and would love to get on the board, so I'm going to keep trying every time they have an opening. It sounds like you have some great events, both for parents and for the kids, that would be really neat to have here in the Twin Cities.

    1. We are very lucky! I'm quite surprised you don't have a better association. Ours is fantastic. Check out the webpage for more info. I couldn't possibly put anymore in this post :-)