The Heart of What Matters
Special Needs Siblings Supports Local Families While Reaching Out to the World By Kim Hill
Beverly D’Amico RN, MSN, GRS Life Coach & Grief Recovery Counselor TheHeartofWhatMatters.com 770-896-3871 TheHeartofWhatMatters@gmail.com
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As mother of a son with autism and epilepsy, Jeniece Stewart spends much of her time in doctors’ offices and therapy sessions, usually with her younger children in tow. She says when she became pregnant with twins in 2015, Jada and Caleb began asking a lot of questions about their brother Christian, wondering why he “gets” to take medicine all the time and why he can have chicken nuggets while they have to eat vegetables. Additionally, there were questions like, “Can we play basketball this year?” that she could not answer in the affirmative due to Christian’s therapy schedule. “I was feeling really lost as a mom and was trying to figure out how to balance attention between them,” she says. Jeniece decided to set up Instagram and Facebook accounts called Special Needs Siblings (SNS) where she shared about herself and her children, and asked people to share their stories with her. “I was hoping for feedback because I couldn’t find support in Gwinnett specifically for epilepsy and autism, and couldn’t find siblings of other children with disabilities,” she explains, “so I created a little network. It just grew wings of its own that I didn’t expect!” Jeniece found herself receiving emails and messages from people all around the world, young and old. Unsure at first what she should do, she began helping people find resources. She started “Siblings of the Day” posts, and parents and siblings would send in pictures and stories, sharing their feelings and frustrations. “All the while my children were seeing other siblings posting and they would engage with them,” says Jeniece. “So I am looking at my children and thinking, ‘I didn’t know you felt like this.’” Jeniece wanted to do more. “Last year I took a leap of faith and we incorporated,” she says. “We became a non-profit in April of last year and received our tax-exempt status in August.” A Gwinnett native and Shiloh High School graduate, she has based the organization in Lilburn. SNS is moving forward through virtual support groups on its Facebook platforms to raise awareness of the many components of being a special needs sibling. Without a way to bring validation to their feelings, which can range from embarrassment to guilt, these siblings may struggle emotionally throughout their lifetime. Many adult siblings say they wish a platform like this had been available when they were growing up. Additionally, parents need resources to help them prepare their children for challenges they may face. Jeniece has realized that for close to ten years, she did not talk to her children about Christian’s disabilities. She felt she was protecting them, but says in reality she may have been hindering them. Now she has helped them better understand his needs and in turn they can educate their friends about Christian without feeling embarrassed. She hopes to partner with counseling services to help children who are reluctant to discuss their feelings. While the online platforms have proven extremely beneficial, Jeniece says her children keep asking if there are “kids in our area like us,” so this year she is hoping to launch Siblings for Life Gwinnett which will be a localized support group. SNS is trying to work with different organizations and companies to have a place where siblings can come once a month and meet other children who share their unique experience. Jeniece would eventually like SNS to have a building for events like these. She says she is finding that a lot of people don’t consider the siblings in special needs families, and generally assume that because they don’t have a disability, they are fine. She is having conversations to help them understand that in reality, these children need to be seen and to have people ask, “How are you?” Jeniece has some grand dreams for SNS. She would like to provide funding to help parents offset the expenses of a special needs child, and she envisions an after-school program for students with mild to moderate disabilities who have “aged out” of normal daycare so their parents can continue working. She knows these types of programs are expensive, but realizes their importance and the value that it would bring to the community. The great thing, she says, is that people are listening. “For a while I used to think maybe I just haven’t found the right resources, but now I know I am creating a resource that wasn’t here before, and that’s a beautiful thing. And it’s scary,” she adds, “but it’s needed; so we just have to keep going and keep sharing what we’re doing.” More information at https://specialneedssiblings.com/
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One Man’s Opinion Continued from page 7 In short, I am thankful for the Our Town community. I wish you a wonderful and safe March. Make your time count, smile, laugh, and enjoy some warm weather and sunshine that will be on the way. As always, thank you for continuing with us on the journey of my town, your town, Our Town!
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Our Town Gwinnett
Welcome to the MARCH (GREEN) 2019 Our Town Monthly Magazine for Gwinnett/Walton county.