Claire loves school. She’s a social person, who loves being around others. Smiling. Visiting with fellow students. But, Claire isn’t your typical sixth-grader in the Papillion-LaVista Community School District. The 11-year-old has Down Syndrome and is a Type 1 (Juvenile) diabetic. Along with the smiles and socializing, come medical concerns.
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“She requires a lot of specialized care, no matter where she’s at,” said Jeremy Baum, Claire’s father. “People have to have some medical knowledge and know how to treat diabetes. The school’s been great, but we still have to train them each school year. She has to have someone with her all the time, such as a teacher or a para-professional.”
Claire loves being at school, and around people. Being in the classroom helps meet the goals her parents and teachers set each year. But, it’s fellow students that drive her enthusiasm.
“She has this sense about her. Her level of empathy towards other people is off the charts,” said Claire’s mom, Laura. “She’s been able to sense when people are sad and need a hug. It’s one of her gifts.”
She’s a strong reader, Jeremy said. Her favorite classes are music and PE, he added.
“She’s really made a lot of progress in reading, and her reading comprehension,” Laura said. “She’s really striving now.”
Math, on the other hand, is one subject Claire would enjoy leaving behind, her mom joked.
While Claire prefers in-school attendance, the pandemic challenges the Baums because of her special needs.
“Covid is tricky, with Down Syndrome and her diabetes, but, especially Down Syndrome, with muscle weakness and a smaller breathing pathway,” Laura said. “And, then, with diabetes, it opens you to more autoimmune diseases, if she were to get Covid.
“I think we’ve been very careful with social distancing, and she’s very receptive with wearing a mask when she’s in school and out in the public. But, for the last year, we did remote learning, with she and I at home together. But, that social piece was missing for her. When she returned to in-class learning this year, you can see just how much more she’s thriving in that environment.”
While returning to school has been successful, the Baums have limited Claire’s extracurricular activities. A bowler with Special Olympics, Claire hasn’t participated with others yet this year, Laura said. They also do track and field, and the family hopes to get her involved with activities during the spring. The Papillion-LaVista school district is planning a unified kickball game for students, and they hope that they can have Claire participate, Laura said.
“I do think it’s important for her to be around her peers and develop relationships with people within that group,” Laura said.
Claire has also attended week-long day camps at Munroe-Meyer Institute, where she has participated in theater groups, Laura said. The sixth-grader has also played soccer with a local program, Laura said
Like other families with children with special needs, the Baums rely on others for support in case they both need to be away from home.
“We both have parents nearby, and they have gone through training (to help care for Claire),” Jeremy said. “But, they’re getting on in age, and memory issues can come into play, so, outside of our parents, support is somewhat limited. Laura has a brother in town, but the rest of our siblings are out of town.”
Former teachers have helped, but as their lives move on, and they have children, their help also naturally becomes limited, he said.
The Baums’ eldest daughter, Grace, also helps care for Claire. The high school freshman is involved with a lot of school activities, but helps when needed, Laura said. She is well-versed in diabetes care and knows how to manage situations if the parents are busy at home or need to leave for a while, Laura said.
The family is involved with the Down Syndrome Alliance of the Midlands, a local advocacy and support group. The Alliance steps in to assist parents as soon as a diagnosis of Down Syndrome has been made, Laura said. The group also offers activities for children, including boxing and a running club, as well as cooking classes, she said.
Asha’s House will offer overnight respite for the Baums, and other families. With seven specially-themed bedrooms, children can stay up to seven nights. Asha’s House will also include classes and programs, such as cooking and art, to keep young adults engaged during their visit. Other programs include social skills, etiquette classes, gardening, and skill learning opportunities. The House’s staff will include on-duty nurses, as well as paid and volunteer attendants and caregivers.
Guests can spend time on their own, away from others, but always will have an attendant on hand. If a visitor wants to work on school assignments or personal projects, there will be space for that.
Asha’s House will provide additional support that families need.