BY STU EGAN
When a parent learns that his/her newborn child has Down syndrome, a flood of thoughts and worries can fill the mind. Questions about health issues dealing with the heart, the digestive system, and muscle tone are quite common. Knowing that there will probably be some developmental delays brings concerns about education and therapy.
For this father and others who raise children with Down syndrome, I needed help and experience from dads who had traveled that road and were happily successful. That support came from the Piedmont Down Syndrome Support Network. What used to be an obstacle in my mind turned quickly into real opportunities. Most important were (and still are) the other fathers of children with Down syndrome who have offered their own experiences and learned lessons to help newer fathers like me.
I was someone who once thought he was raising a child who was different. I now am someone who knows he is raising a child who is just differently-abled, and more like other children than unalike. But as new challenges appear, like schooling, IEPs [individualized education programs], medical providers, and financial planning, that support group becomes even more important.
In 2002, a group of eight fathers of children with Down syndrome in Indiana decided to come together to create a cohesive unit for fathers to become more active advocates for their children and a support group for each other. Thus, D.A.D.S. (Dads Appreciating Down Syndrome) was formed (dadsnational.org).
Since that first group formed, D.A.D.S. has grown with active chapters in almost 40 states and four countries. One of those chapters is right here in the Piedmont as a part of the Piedmont Down Syndrome Support Network (pdssn.org).
As stated on the PDSSN website, “PDSSN’s D.A.D.S. group is an organization of fathers of children with Down syndrome whose mission is to assist and support each other and their families through fellowship and action. Members come together at monthly meetings to share insights, stories, and experiences that are unique to fathers of children with Down syndrome.”
But this group does not only consider fathers of children with Down syndrome as members. Any male relative or active advocate is welcome to come and share, as well as be active in the community raising awareness and funds that can help outreach programs.
Every last Tuesday of the month, the PDSSN D.A.D.S. chapter meets to talk, share, and plan events to help local families who have children with special needs. One such event is the 3-2-1 Deacon Dash to be held at the Lawrence Joel Veterans Memorial Coliseum/Winston-Salem Fairgrounds this coming March 25th.
The 3-2-1 Deacon Dash is a 5K race and fundraiser that has an extra .11 mile added to create a total distance of 3.21 miles as a way of honoring people with Down syndrome and raising awareness in the community. Individuals who are born with Down syndrome, also known as Trisomy 21, have a third copy of the twenty-first chromosome (they have 3 copies of the 21st chromosome, thus the 3.21).
Last year’s inaugural Dash was very successful and this year’s event promises to be better, and there are many ways to participate. People can register as a runner and be officially timed for a 5K race (the extra .11 mile is for fun). There will also be a one-mile Fun Run. Participants for both of these events will receive a t-shirt, goody bag, and a racing bib.
Those who do not wish to run can register as a “Runner in Spirit” and still receive a t-shirt and enjoy all of the music and games. Some snacks and beverages will be provided, and food trucks will be available for additional items to purchase.
Registration is already open. Simply go to Bit.ly/PDSSN-Deacon-Dash-2017 for more information.
If you are a father, male relative or friend of a family that has a member with Down Syndrome, the PDSSN chapter of D.A.D.S. very much invites you to join us in our efforts to raise awareness and advocate for our loved ones.