Sharing the Journey with Jeneva: Loving Anian with Meeka Caldwell

Anian & Meeka [image description: A Black boy with Down Syndrome hugs his mom, who wears glasses and has short light hair.

Meeka Caldwell is an author, wife, mother, and advocate for special needs and for the inclusion of Black and Brown people in the disability community. Noticing a need for more diversity-embracing literature, she set out to write A Friend Like Anian to highlight her Black son with Down Syndrome and show how positive community interaction fosters a greater understanding of people with disabilities. Trained in Human Resources, Conflict and Negotiation, Meeka brings her passion for people and community into every aspect of her professional career as well. She lives with her family in Upper Marlboro, Maryland. She will continue to add to the series A Friend Like Anian and fight for the rights of all those with complex medical needs and disabilities.

Tell me about your family.

We are a blended family. My husband and I have six children altogether, and they range from Tre (24), Miya (23), Zaire (20), Aven (9), Prix (8), to Anian (6). When we can all be together, we love to just cook, watch TV, play games, laugh, bond. It's not easy bringing everyone together, but we try to spend as much time together as possible. Anian right now is so busy. He just loves doing stuff, LOL: playing with our dog Sasha, helping me cook, playing with his sisters. He’s just very rambunctious, mischievous, and hilarious! We'll miss getting together for the holidays this year, but we have Zoom and Facetime! 

Tell me about Anian's medical needs.

Anian was diagnosed with Down Syndrome. To date, he hasn't had any serious medical issues. What we are working on the most is speech therapy. He has limited verbal speech, but he can definitely communicate. He knows some sign language and is always open to learning more! I am currently looking for a class where I can learn virtually and then be able to teach him. 

Anian & his sisters. [image description: Standing in front of a fountain are two young Black girls with cornrow braids pose on either side of a young Black boy with Down Syndrome.]

You've written two children's books about Anian. What inspired you to write them? Do you plan to write more? 

When Anian was younger and first starting school, I looked for books about Down Syndrome to read to his class. I noticed they were difficult to find and impossible to find with a Black child with Down Syndrome. I wanted him to be represented in my advocacy. We searched and searched and, since we couldn't find one with a Black child, we decided to write our own, A Friend Like Anian. I never thought I would be an author, but, honestly, I love it. I'm telling his story very simply; it's all derived from his everyday life. I absolutely plan to write more. With our second book, A Friend Like Anian: First Day of School, we went with an entirely new look that I think is spectacular, and I can't wait to continue the series. 

I love all the ways you've seamlessly blended disability issues into A Friend Like Anian, especially that Anian has multiple ways to communicate: speech, pointing, and sign language. That really gets to the heart how important it is that parents, teachers, and friends accept multimodal communication strategies. How has Anian's community helped him? 

Cover of A Friend Like Anian. [image description: Illustration of a young Black boy with Down Syndrome posed in front of neighborhood houses.]

I really appreciate our family, our church community, and the school community. Locally, Anian is known as “Boo Thang.” and his story has been on the news and in the local paper. He is truly embraced, supported, and loved-on all the time. It's nice when you develop those community ties, especially with our local Down Syndrome organization, PODS (Parents of Children with Down Syndrome) of Prince George’s County, which is working hard to advocate and support all of our families. Because so many people know Anian, they do indeed speak to him when they see him. They usually recognize Anian before the rest of us, LOL. And it's great because he is a part of the community like everyone else, so people engage with him, which definitely helps his communication. 

How did you first become an advocate? What steps have you taken to increase your skills? 

I think we first found out he had Down Syndrome when I was 15 weeks pregnant. I googled more than I ever have and reached out to so many to get questions answered, for comfort, and then to learn from other parents things to be vigilant about. Education and healthcare being the top items on the list, I made sure to connect with his doctors and school community to get what was needed. Over the years, I learned from other parents, especially, and, of course, from taking the Arc of Maryland’s Partners in Policymaking program in 2020, which has helped tremendously with understanding how to work with local and state representatives to petition for the rights of every child with a disability. It's been an eye-opener, and I'm always trying to increase my skills. I am currently working through a Master IEP (Individual Education Plan) course because that's a hurdle, and I'm always trying to understand more about this process. 

Cover of A Friend Like Anian: First Day of School. [image description: Illustration of a Black mom with glasses and short light hair hugging her son with Down Syndrome in a child’s bedroom.]

How have you engaged Anian in self-advocacy? 

Since our first Down Syndrome Walk in Charles County when Anian was a few months old, we have made sure to advocate as much as we can as a family. I think Anian is learning that these events have something to do with him (LOL), and, as time goes by, he will certainly develop his own voice and learn how to advocate for himself. I can't wait! 

How has advocacy given meaning to your life? 

I feel like I've always been an advocate for my children. It's another part of being a parent, of being human, really. My eight-year-old, Prix, was born with a submucosal cleft palate. I had no clue what that was, and I had to advocate on her behalf for medical care and therapy. Also, reaching out to new parents and being a support for them truly make my heart glad. It's so much information and so overwhelming at times for new parents, and I understand and want to help. I think advocacy gave us a greater meaning as family. 

If you could define advocacy in a single sentence, what would that be? 

Showing up with your presence, voice, and knowledge for the ones that need it the most. 

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Jeneva & her son Rob [image description: A white mom with short blonde hair wears a blue scarf & grey dress. Her son is seated in a wheelchair with an orange shirt & orange baseball cap.

We hope you enjoyed this installment of Sharing the Journey with Jeneva, a recurring feature on our Little Lobbyists blog. Through these interviews we will share the advocacy journeys of caregiver/parents and disability self-advocates, inspiring us to forge ahead together. Send an email to Jeneva if you have any questions you'd like to see, or if you'd like to be interviewed for a future installment of this series! 

Jeneva Stone is the manager of the Little Lobbyists blog. She's worked as a teacher, a government editor, and a Hill staffer. Jeneva is also a writer, with numerous publications in poetry and nonfiction. She lives with her son Robert, who has complex medical needs and disabilities, her husband Roger, their two cats and a dog in Bethesda, Maryland. Her second child, Castin, is currently a student at Middlebury College.