By Miriam Bernard
As the mother of five boys and a youngest son with ACC, Wisconsin native Shelley DeCleene has numerous details to manage on any given day. Maneuvering around sporting events or theme parks had frequently proven difficult as her son with ACC, Asher, nearly three years old, is large for his age, can overheat easily, and occasionally feels overwhelmed with external stimuli. The cramped and noisy wagon the family used to get around on foot would cause discomfort for Asher, making outings such as the county fair, Disney World, or even just family walks and sports days less enjoyable.
When Shelley became aware of the Olam’s Piggybank Grant awarded twice a year by the NODCC, she considered how much an assistive wagon with more conducive features would improve outings with her family and for Asher, specifically. However, like many families, Shelley hesitated to apply because she questioned whether her request for an item such as a wagon was worthy of an application when there may be families with more pressing needs. She states, “I kept putting off applying because I’d think, ‘No, someone else needs this more.’” With just a week left to the deadline, Shelley ultimately decided to send an application, and was very pleased to find out that her family had been selected and would be given the funds for a wagon that would make transportation a comfortable experience for Asher, as well as their other children.
Now that the DeCleene family has the new assistive wagon, one that Shelley states would have been otherwise cost-prohibitive, she claims it has improved her family’s day-to-day events significantly. She even states she wishes she would have applied for the grant sooner. Asher can now sit comfortably in the wagon and can safely switch seats when desired safely without fear of his foot getting caught in the tire as could occur with the stroller they sometimes used before. The new wagon also features shock absorption and larger tires that ride quietly and provide less disruptive external stimuli for Asher. Lastly, it has a quality canopy that provides shade so Asher does not overheat during long days at the sports park watching his older brothers play soccer.
When asked what she might say to families on the fence about applying for an Olam’s Piggybank grant, Shelley states, “It doesn’t hurt to ask. There’s no negative result in doing that.” When thinking about the types of assistive devices families might need, it’s easy to rule out “less crucial” needs as insignificant, but Shelley wants our NODCC community to know that it’s worth it to request even something that would simply improve your overall family time. Shelley wisely reminds us that “Assistive devices have a plethora of meanings.”
As one might expect, the DeCleene family loves outdoor and physical activities that allow the boys, ranging from ages 2-12, to play hard and get energy out. They’ve recently been enjoying a family membership to “The Strand”, an indoor active play and rock-climbing facility near their home, thanks to a gift from Asher’s Children’s Long Term Care Support Coordinator (CLTS). When asked if their family has fun, Shelley replied, “Probably too much fun, sometimes!” When we picture all those brothers using their new wagon at their home in Wisconsin, we believe it! We hope Shelley, Asher and all her boys enjoy their assistive wagon greatly, and we hope you will consider the NODCC Olam’s Piggybank Grant Program. Applications are currently open and the deadline for the summer cycle is May 31. The Olam’s Piggybank Grant program fulfills two grants per year and more information is available on the NODCC website: https://nodcc.org/