by Miriam Bernard
Samantha Deschenes, mom of three, is the type of person who finds every possible resource to create an inclusive life for her son, Desmond, who has a rare genetic disorder that includes ACC and other special needs. The family resides in the Cape Cod area of Massachusetts and enjoys partaking in a variety of activities that Desmond can experience, including cabin camping, museums, walking on bike trails, and enjoying the outdoors during all types of weather, including snow. Samantha’s two older children, ages 9 and 10, frequently enjoy sledding down a slope in the family’s backyard during the winter months, but their previous attempts to include Desmond in their snow play with improvised tools and typical sleds did not offer a safe option. This is when Samantha began looking into specialty assistive sleds that could accommodate Desmond’s physical needs, while allowing him to enjoy snow play with the family safely. Due to the high cost of assistive devices, Samantha has become familiar with grants and applications available to her family, and in the process of learning all the NODCC offers, she grew aware of our program called Olam’s Piggy Bank.
Thanks to a generous grant from The Swan Foundation, the NODCC provides twice-yearly grants to families and individuals that need assistive devices and technologies. Through research, Samantha prepared a list of various programs that might offer opportunities for her family to add needed devices that would enrich Desmond’s quality of life. When she learned of Olam’s Piggybank, she thought this could be an opportunity for her family to acquire the special assistive sled so that Desmond could safely enjoy sledding. Samantha decided to apply for the Olam’s Piggybank grant.
Within a few months, Samantha learned that their application had been accepted, and their family was so excited. They put the sled under the Christmas tree, and helped Desmond sit in the sled indoors. They could tell from his facial expressions he was curious and excited. When snow arrived and it came time to use the sled, their family was thankful to find that the back of the sled had a special handle that could act as a place for Desmond’s oxygen apparatus to rest. On the slope in their backyard, Samantha’s oldest son gave Desmond a little push down the hill and he floated down the slope with no one holding onto him for the very first time. Not only was this a thrill for Desmond, but his entire family was so glad to participate in that special moment. Samantha recounted, “My other kids like including him, and we definitely push for him to be included in everything. It’s not always easy, but when we have the right equipment it makes it so much easier.”
When asked what advice she would give to others considering submitting an Olam’s Piggybank application, Samantha shares, “I would definitely tell them to apply. I’ll always give it a shot, especially if it’s something your kid needs. I’m sure most parents who have children with special needs will understand – you’ll do anything to try to get your child what they need.” We’re so glad Desmond now has a way to sled with his family, and we’re thankful for resourceful parents like Samantha, who are willing to do whatever it takes to create inclusive and enjoyable activities for their kids with special needs.
The Olam’s Piggybank Grant program fulfills two grants per year and more information is available on our website: https://nodcc.org/