From the Heart of Founder, Nina Fuller
When my husband, Andy, and I founded S.M.I.L.E. on Down Syndrome in 2001, we weren’t sure how many people would be interested in attending a “support group.” Don’t get me wrong. I think there are many valuable groups that gather together to share common issues and are very useful. I knew from my background in counseling others that we would not be a group of “whoa-is-me–Eeyore-type” support group. I had seen enough of those in case studies and knew to steer away from that.
We wanted our group to have meaning and depth and purposeful hope. After all, knowing that close to 90% of babies diagnosed with Down syndrome prior to birth were terminated, we wanted to be a positive influence in our community to not only help spare future babies, but to be there for the brave parents who received either a pre-natal diagnosis or post-natal diagnosis after the baby was born. I whole-heartedly believe in being a part of the solution and not stand idly by hoping someone else comes up with a good idea. And, that is when the seed of S.M.I.L.E. was conceived. We wanted to present our new group as a positive outreach beginning with its name! As I thought about what our family needed when we first started our journey in the world of Down syndrome, what was it that we needed? We started with that as our platform. We needed:
Support – emotional support to sustain us; spiritual support to edify our faith; physical support to often help with our other children; even financial support to help with the extra needs involved
Management – Who? What? Where? How? Where should we start to help organize the details of this world of special needs, and specifically, Down syndrome?
Information – We needed to know where to go for current information on Down syndrome. Locally, at the time, there was absolutely nothing current in any medical resource we could find in our community, just two very outdated (1970s circa) articles with disheartening photos. We eventually learned there was a group in Washington, D.C., the National Down Syndrome Society, with a long-distance number to call for information.
Love – This was one thing we knew we had surrounding us through loving family and friends, as well as lots of love to give to our special needs baby. One can never have enough love! But, one concern we had was “What if our baby is rejected and no one outside the family will love her?”
Encouragement – Who could I call asking about a health or developmental concern? What was “normal” with a newborn with Down syndrome? with a toddler? a pre-teen? Who was just a little ahead of us on their journey who could offer me advice and point me in the direction I needed for answers to questions I wasn’t even sure to ask?
With these reflective thoughts in mind, we put word out to the couple of organizations we knew about in the community back in 2001. We made flyers with our new acronym, SMILE, along with a sub-title that I carefully chose: “Bright Hope for Tomorrow.” It’s not an original phrase but it was perfect for what we were trying to convey! We opened our home wondering if anyone was interested enough to come and welcomed fifteen moms, dads and fifteen children and infants with Down syndrome that first evening! The group was born and we made the decision to keep it simple and small! We needed to take baby-steps as we, along with our young children with Down syndrome, were learning to walk this new trail. I knew there were older families out there somewhere but it took us a few years to find them!
We left “simple and small” behind several years ago as the needs locally, statewide and on a national level grew bigger and broader. The more we learned and the more needs we saw, we knew we couldn’t just be idle. There is too much at stake. Our children’s lives are at risk of too much harm if we do not remain active in our advocacy for them and future blessings with that extra 21st chromosome! Some of the advocacy in which SMILE on Down Syndrome is committed includes participating in:
The Informed Decision-making Task Force which is a think tank group of leaders to help the medical community communicate current and accurate information when giving a diagnosis of Down syndrome
Disseminating legislative action alerts. Currently we are making local and national pleas via social media for everyone to write to their senators and representatives to pass the ABLE Act which will remove the financial cap of $2,000 savings of employed people with special needs. This will allow for better financial health for everyone involved. I am proud to say the electronic poster campaign is the creative artistry of our very own Nikki Davis! Once the NDSS saw what we were doing through SMILE, they asked us to share the four beautiful faces of our local “models” for this vital campaign!
SMILE on Down Syndrome is in partnership with the National Down Syndrome Adoption Network which is a hub for birth parents and hopeful adoptive parents to find one another.
If you are on our SMILE Parent to Parent Network via email, FB, website, or hard copy newsletter, you will know that we also provide a wide variety of social and educational opportunities for infants through adults with Down syndrome, their families, other special needs groups, and our community at large!
Where do most of these opportunities take place? The SMILE Center~A Place to Laugh & Learn, at 105 NW 4th Street, downtown Evansville! We are grateful to Wired Coffee House that also extends their multi-purpose facility to us across the hall for large events! Our children enjoy the fun environment with lots of creative play activities while parents and other adults take advantage of the auditorium to share ideas, concerns, information and hear guest speakers, as well! (And, you’ll find a great cup of coffee or delicious smoothie to enjoy!)
There is always something brewing at SMILE to help with support, management, information, love and encouragement! Come join us as we share bright hope for tomorrow!
Here for you,
S.M.I.L.E. on Down Syndrome