Executive Director Reflects on Goals for Triangle Down syndrome Network
Christina Reaves says much has been done but there is much more to do.
Fear…Denial…Confusion…These were the emotions, among others, that Christina Reaves felt when her newborn baby, Emmaleigh, was diagnosed with Down syndrome. She had so many questions but didn’t know where to go for answers. Some resource information was given to her but not nearly enough to help her navigate or prepare for the challenges her daughter would face. She felt very alone.
By the time Emmaleigh was four years old, the gap began to widen. She was advancing slower than her typically developing peers. That summer was particularly difficult for Christina until one day, completely by chance, she met four other mothers of children with Down syndrome, by the pool, of all places.
Christina spent time talking with these moms, knowing they were not judging her, that they completely understood what she was going through. She left the pool that day in tears, comforted by their support and not feeling so alone. She registered for her first Buddy Walk and applied for a job at the Triangle Down syndrome Network (TDSN) that day.
“I know what it’s like to not be connected,” says Ms. Reaves. “I don’t ever want anyone to feel that way. This is what drives me to do my job every day.” Since then, Christina’s commitment to serving children with Down syndrome has provided support and guidance to many families.
When Christina first became involved with TDSN, they had limited services available and did not have a good process for finding new families. Improving this outreach became Christina’s focus and it is under constant evolution.
Today they have peer mentors who are trained volunteers conducting hospital visits to new moms that just delivered and received a diagnosis of Down syndrome. Most of these moms want someone to come to them right away to help guide them and help them understand the challenges but also to know there are resources available. TDSN has these volunteers covering most of North Carolina, not just the Triangle area, but there are still limitations to their outreach. Currently they are serving families in 81 counties throughout North Carolina but this is still not enough. The goal is to be able to serve families in all 100 counties in North Carolina.
A major piece of the TDSN’s evolution is to expand further to the Eastern and Western parts of the state and pay close attention to underserved areas. Ms. Reaves, her staff and Board of Directors have been working on developing a plan to accomplish this and will be announcing it at the Buddy Walk October 6 for implementation in 2020.
Partnering with medical professionals and getting support at the hospital level, OBGYNs, county services, social workers, etc. will have a big impact on reaching families needing guidance. “Making sure that every baby in North Carolina born with Down syndrome is touched by TDSN and receives a joyous welcome is our top priority,” says Ms. Reaves.
“Through outreach, education and partnership, we are changing the face of Down syndrome. Connecting families early, providing resources, and training parents on best practices gives us the ability to train a generation of individuals with Down syndrome whose potential is limitless. By providing these intervention services, we now have children that are learning to read, interact with others, driving cars, graduating high school and working in meaningful employment. This was not the case just 20 years ago.
These individuals can be and are productive members of society and should not be defined by the fact that they have Down syndrome. It is our goal that others see beyond the characteristics of Down syndrome and see each of them for the person they are,” said Ms. Reaves.
All are welcomed to join the TDSN at this year’s Buddy Walk. It will be held on October 6 at the Archer Lodge Community Center in Clayton, NC from 1:30 to 5:30pm. Whether you have Down syndrome, know someone who does, or just want to show your support, all are welcome on this day of celebration.
Visit https://www.ds-stride.org/trianglebuddywalk for more information, to register a team and to help spread the word!
Christina P. Reaves, Executive Director
Triangle Down syndrome Network
7951 Monument Ln, Suite 101
Raleigh, NC 27615
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