An Interview with the Down Syndrome Association of Middle Tennessee
by Kahwit Tela
October was the month for Down Syndrome Awareness and to spread awareness, the folks at This Wonderful World hosted a Halloween-themed charity livestream on October 24th, 2020 via YouTube Live.
The charity livestream, which featured different artistic acts such as poets and musicians, was successful in raising $165 for the Down Syndrome Association of Middle Tennessee.
On October 10, 2020, I was able to interview Alecia Talbott, the Executive Director of Down Syndrome Association of Middle Tennessee, via Zoom.
Here’s how the conversation went:
Tell me about yourself!
Alecia Talbott: Well, I’m the executive director of DSAMT and have been for seven years. I got involved in the disability community when my youngest son was born. He’s twelve and he was born with Down Syndrome. So, I began doing a lot of volunteer work, getting involved in my community because I wanted to make sure that he was growing up in a community that values him and I never wanted him to limited by other people’s perceptions of what Down Syndrome and disability meant. And then, it just so happened that the position came open.
The previous executive director of many years had decided to take a new position and that began my life here at the association!
What do you do at the Association?
Alecia Talbott: It’s the mission of DSAMT to ensure that individuals with Down Syndrome are truly valued for their extraordinary gifts that they bring to our communities, our schools, our neighborhoods and to our families. So, that really can lead very happy, meaningful, included lives in the community and we do that through education of caregivers as well as individuals w/ Down Syndrome.
We also do education in the schools for educators as well as medical professionals and businesses. We also do advocacy, so we help parents learn to navigate the individual education process for their children who are students.
We’re also very involved in legislative initiatives on the local state and national level. So, a few years ago, two years ago, we wrote a bill and got sponsors and then actually passed it in Tennessee. It’s called “The Down Syndrome Information Act” and that required the Department of Health of Tennessee to put up-to-date, accurate information on its website about delivering the diagnosis of Down Syndrome, resources for parents, etc.
The other piece of what we do is we call community but a lot of that is support. Support for new parents when they receive that diagnosis to start them on their journey of celebration with gifts and parent mentors and baby showers and education and just connecting them to the community as well as support for Spanish-speaking families, single families, siblings, grandparents, kinda you-name-it and we have county groups for folks to get closer with those where they live because we serve all 40 counties that’s considered Middle Tennessee.
Then, we house several different programs specifically for individuals with Down Syndrome like a tutoring program, a weekly book club for teens and adults that get together at a coffee shop and read aloud until they get to the end of the book and then they have a pizza party and watch a movie (chuckles).
Then we have a monthly social program which really focuses on social educational recreational type of activities, but we had to postpone that. In lieu of that, doing an online creative, so we send them a box full of paints and supplies and every week we get on a zoom call like this and make something different or do something different like Taekwondo or dance instructor. So, we do a lot (laughs)
How would you describe the Down Syndrome Association to people who might have been unfamiliar with the organization before?
Talbott: Honestly, we don’t have a membership, per say. If you know someone, love somebody, care about someone or are interested in Down Syndrome, we consider you to be a Beneficiary (chuckles). It’s really all about just supporting families and individuals in any way that we can.
I really like that! What would you say a typical day at the organization is like?
Talbott: We don’t have a typical day (laughs) They’re all different, which is a blessing and a curse. But some days, we’re going to the hospital to meet with new families and congratulate them.
Other times, we’re going to the hospital and taking a sunshine bag and a meal to families whose loved one just had surgery or is going through a difficult time. Other days, we are hosting workshops for families either on financial planning to potty training to sex. We have all kinds of educational programs.
Other days, we are hosting the clubs, the folks in office for tutoring programs or planning events or a lot of the things we do are event based. So, coming up at the end of this month of course is Down Syndrome Awareness Month. So, we kicked it off with a race on (October) 3rd and then we have several events throughout (October). It all kind of culminates with the Nashville Buddy Walk on November 7th, which is the end all be all to that. The largest Down Syndrome Awareness Event in the state (of Tennessee), with typically 5-6,000 attendees and of course, most of them don’t have Down Syndrome, so It’s really become a true community event and we’re proud of that! Individuals with Down Syndrome come with their families, friends, etc.
Everyone comes from cheerleaders to superheroes (like Captain America!) … and it’s kind of a festival family reunion feel! This year, due to Covid, we’ll be doing it at the Veterans Motorplex, and it’ll be more of a parade.
You mentioned the “typical day” being different and being a “blessing” and a “curse”. What would you say are some of the difficulties and rewards when advocating and educating about individuals with Down Syndrome?
Talbott: So, I’ll start with the difficult stuff. The difficult stuff when parents find out when they’re pregnant, that their child has Down Syndrome and they’re contemplating about making a life-changing decision. That’s tough.
That was never a choice for me, so I can’t exactly put myself in their shoes and say, “I truly understand what you’re going through”.
That’s one where the best I can do is to pray to God to help me say the right thing. It’s very difficult when we visit families in the hospital and their loved one just had open heart surgery.
About 50% of individuals with Down Syndrome are born with a heart issue with most of those being correctable.
But when you see a six-month baby whose entire chest has been open up with tubes everywhere, that’s hard as a parent to see. But we’re there for them because our kids are pretty resilient.
Another thing that’s been difficult is that just because (someone) has a child with Down Syndrome, that doesn’t inherently mean they’re a great parent…. We still have abusive parents in our community and that’s really hard. It’s hard when our kids really need something to be successful in school and you have to fight to get that for them.
And the hardest of all is when we lose (someone)… When (someone) passes much too young or at any point, the whole community feels that loss. We do try to support those families
We’re just very fortunate that the community of folks who have a child with Down Syndrome are really a family and it’s a very supportive group of folks.
The good days are days when we have kids and adults and we’re just having a good time! (chuckles) Those are the good days, right?
Whenever you see real growth happen whether it’s through events like the Book club or learning, those are the golden moments! Especially when they say “Hi” and their smiles are big!
You mentioned earlier with the example with the parents. Is there more male than female individuals with Down Syndrome? Certain age demographic?
Talbott: Nope! So, there are three types of Down Syndrome and women who are under the age of 35 are actually the most likely to have a baby with Down Syndrome.
However, that’s because women under 35 are most likely to have babies, right?
So, (Women) could be 20 and have a child with Down Syndrome.
(Women) could be 40 and have a child with Down Syndrome.
It’s the individual likelihood of a pregnancy that results in Down Syndrome that increases with a woman’s age.
So, Down Syndrome is the triplicate copy of the 21st chromosome. Trisomy 21 is when that triplicate copy actually stays on the 21st chromosome, so if you look at the DNA, you see the pairs of DNA and when you get to the 21st (chromosome) and there’s three of them. (Which is real neat looking!)
The other two types, one of which is called mosaicism or Mosaic Down Syndrome. Mosaicism happens when the extra piece of genetic material still sticks to the 21st chromosome but doesn’t attach to all of the cells. (Some of the cells have Down Syndrome and some don’t, so to speak)
The third type, which is pretty rare, is Translocation Down Syndrome. This kind doesn’t copy on the 21st chromosome but rather different chromosomes.
Also, Translocation is genetic. Otherwise, there’s no difference. There’s about 1 in 700 live births have Down Syndrome. We know that there’s about 400,000 individuals in the United States with Down Syndrome which roughly translates to 8,000 in Tennessee.
I’ve noticed that the domain name is www.somethingextra.org . Is there a story behind that?
Talbott: Yeah! So, it’s kind of a funny story! When I took over as Executive Director, I didn’t get the email that said that we needed to renew our URL.
So, we lost DSAMT.org and we had to quickly come up with the appropriate lingo.
Honestly, we’re going through rebranding at the time and we were focusing on “extra”.
Part of what we’re trying to accomplish as a non-profit is to change the way the world sees Down Syndrome into one that is positive.
Because Down Syndrome sounds kinda “down” but most of us wouldn’t take it away if we could. We see as something that should be celebrated!
… (Individuals with Down Syndrome) are just as unique, just as different as the rest of us. They just happen to have Down Syndrome
So, we got to thinking about this “extra” and (DSAMT) came up with the concept of celebrating the extraordinary!
(Down Syndrome) is ordinary and (Individuals with Down Syndrome) are just ordinary people but they’re extraordinary for what’s “extra” about them, which is that extra chromosome.
And that’s how we came up with Something Extra!
What’s something that you hope people can learn from the advocacy and education of what DSAMT does?
Talbott: At the end of the day, people with Down Syndrome are great people to know!
… (Individuals with Down Syndrome) might need a little help, a lot of patience, folks to slow down and support.
But their lives are just as valuable as the rest of us and I would argue, in some cases, more because of those extraordinary pieces they bring to our lives.
What advice would you give to someone who knows an individual w/ Down Syndrome and they want to learn more about Down Syndrome but don’t have any resources?
Talbott: If you’re in Middle Tennessee, go to www.somethingextra.org or contact myself or any of my staff members.
We’re considered the #1 resource on Down Syndrome in Middle Tennessee, so if we don’t immediately have the answer, we know who the experts are to get your answer on down syndrome
What ways can someone get involved with DSAMT?
Talbott: So, we have a staff of just four, so we use a lot of volunteers. We can always use hands-on help! We’re also always accepting donations of items (ex. diapers, toys, toilet paper) and looking for items that we can give to families in crisis
Also, tell somebody about it! As well as get to know folks with disabilities and you won’t look at them differently.
You know, it’s all about what’s inside and that’s a real important lesson to learn.