The Down Syndrome Association of Central Oklahoma

 

 

Needs & Deeds: Down Syndrome Association of Central Oklahoma wants families to experience joy, not fear

 

By Alex Strohm For The Oklahoman Published: June 6, 2016

Many would say life is known for the unexpected. However, one nonprofit is turning around the possible stigma of fear into one of joy. 

The Down Syndrome Association of Central Oklahoma began in 2000 with the mission to raise awareness and provide resources as well as promote acceptance and inclusion for people with Down syndrome. 

Executive Director Jill Harrison was a volunteer and board member for the organization before taking the executive director position last year. She said she had to try for the position because of her love for the kids and their families.

“This is my passion,” Harrison said. “I can't believe this is my job. It's pretty incredible.”

In a recent interview, Harrison spoke about how the nonprofit provides an important resource for the community.

“When baby is born with Down syndrome, the first thing the parents hear is, ‘Oh, I'm so sorry,' ” Harrison said. “We want to be the ones who say “Congratulations! We are so excited for you and we have a lot of support we can provide you.' ”

Q: How was Down Syndrome Association of Central Oklahoma founded?

A: The organization started unofficially in the mid '90s. Twenty years ago, when a kid with Down syndrome was born, there was nowhere for anybody to go and get support. A group of parents wanted more than that and really wanted to help each other. They formed support groups around the city, and their numbers kept growing. They started adding social events and fundraisers and eventually got to the point where they wanted to form an official organization. In 2000, they got an executive team together and applied for 501(c)(3) status. Since then it has continued to grow exponentially, and we now serve about 700 families in the Central Oklahoma region.

Q: What services do you offer for new families?

A: We serve families all the way starting at prenatal diagnosis to adulthood with a variety of programs and services. 

If we get a referral for a new baby from the hospital or anyone who has a baby with Down syndrome, we mobilize our First Connection team. I'll assign a member of the team to the new baby, and they will go out and visit the family, bring them a bag of goodies and congratulate them. We also have this binder of information about what parents will need to know about raising a child with Down syndrome and then connecting them with services. That is kind of the first touch we have with families. After that, we have new parent breakfasts for 3-year-olds and younger, where parents can get together and meet other families.    

Q: What programs are available for kids as they get older?

A: As they grow, we have social opportunities such as our Easter egg hunt, Christmas party and summer picnic. We have dances just for our teens and adults. Our Valentine's banquet is similar to prom, where there is a nice dinner and a dance. We also do a Halloween dance where they wear a costume.

We offer free tutoring to school-age kids in the areas of math, reading, handwriting and spelling or typing. They can come to the office and get free tutoring from a certified teacher, which is pretty cool, because private tutors can be expensive.

We have a brand-new school readiness program that we're starting this summer. When our kids age out of SoonerStart and start to go into public or private school, they'll have to be on an IEP, or individualized education plan.  We try to give parents information about IEP through four courses, so they go into kindergarten with confidence. We also have a basketball camp in the summer and Friday night cooking classes.

Every Friday night, we do a microwave-based cooking class called Kylee's Kitchen to help with independent living skills. They will make a whole meal and a side or dessert, and then they eat together with their friends. These are just the most amazing young adults. We just have a ball. It's definitely our most popular program. 

The last thing I'll tell you about is our self-advocacy workshops for teens and adults with Down syndrome. We want them to be able to speak up for themselves and have the life they want to have. Some workshops have focused on speaking up, communicating effectively, options when you graduate from high school and resume help.

Q: Do you have any outreach programs?

A: Yes, we do regular outreach, medical outreach and school outreach. School outreach is like bullying prevention. We go and present to classrooms, particularly if they have a student with Down syndrome in their class or school.  We tell the students what Down syndrome is and how to be a friend to someone with Down syndrome. We explain how we're all alike and that being different is OK.

We do a ton just being a staff of two. We just added a program coordinator position in January, alongside me. Of course, we also have a board of directors and a lot of really great volunteers.

Q: Do you have any events coming up?

A: Every year we do a Down Syndrome Festival and 5K, previously called the Buddy Walk. It's our largest fundraiser, and last year was the most successful year that we've had, with 6,000 participants. The event provides a very large chunk of our budget every year. It's open to the public and free unless you want to run in the 5K. There is an awareness walk and then there's a festival inside the Bricktown Ballpark. Families will form walk teams and raise money through those teams. It's a really big event, and a lot of people get excited about it because people can rally around their loved one and talk about their life. It's a really fun event.

Q: What are some of your recent successes?

A: I've been in this position for almost a year, and since I've started we've been able to add a lot of new programs. I mentioned the school readiness program is new, but we've also added a fundraising luncheon on World Down Syndrome Day that was really successful. We're starting something called Elementary Adventure Club for kids in elementary school, which is going to be like a monthly social gathering. I would say overall the biggest success is the growth we have experienced over the last year. It's all been very exciting.

Q: What are your greatest needs?

A: We are completely funded by grants and private donations and fundraisers, so we always accept people who want to support us financially. We are also always in need of volunteers for our basketball camp, Kylee's kitchen and other programs. We'll need around 150 volunteers for our festival and 5K. If someone is interested in volunteering, they should visit this page: www.dsaco.org/volunteer. This is up-to-date with our current volunteer needs. 

Q: How do you see the Oklahoma chapter growing in the future?

A: Our big lofty goal is to have our own independent facility. In my dreams, we have a huge complex with our own gym for basketball camp, classrooms and a place to practice independent living skills. Right now we are in an awesome space, and we love it, but we would love to have our own independent facility where our kids can come and get all of their services.

In the meantime, our goal is to reach more families. There are still people who don't know about us or think there's a barrier; that we cost money to take advantage of our services, when that's really not the case. If someone has a loved one with Down syndrome, we are here to serve them. We have a really awesome group of families who love their children and are really good advocates for them. I want people to know that we're here.

Q: Why is Down Syndrome Association of Central Oklahoma important for the community?

A: Kids with Down syndrome are going to need extra support throughout life. They are going to be successful adults. Some will live independently, some will get married, and some will go to college. However, that's not going to happen without the right supports in place. We are there for that reason. We want to help them reach their full potential and grow into the best version of themselves.