Gavin is nonverbal, but he has a lot to say.
One morning, he was making his signature chin gesture for “I want…” His mom, Amy, began running through the list. Did he want his sister, his grandma, food, water, TV? No, none of those. Finally, Amy asked, “Do you want to go to SOAR365?” Gavin broke into a huge grin and began nodding excitedly.
“That just made me so happy,” says Amy. “As a mom, to know that your child is going somewhere that makes them so happy, so pleased to see the people that they’re going to see there, the caregivers, the other kids there, the activities. I know that he’s safe, he’s cared for, he’s in a loving environment.”
Born with Alfi’s syndrome (a rare chromosome disorder), Gavin uses a variety of speech and communication tools, including a PEC board, sign language and an electronic talker. The DSPs in SOAR365’s Children & Youth Program understand how to use them all. They also take the time to phrase questions appropriately, so that Gavin can answer easily with a yes or no.
One of Gavin’s most heartwarming requests? “I want to touch your hand.” But he’s particular about whose hands he likes to hold (and doesn’t prefer long nails!). Full of laughter and personality, Gavin loves eating snacks, playing with sensory tubes, drinking water, flipping through magazines and listening to music (Maroon 5 is a favorite).
If he ever gets overwhelmed, SOAR365 DSPs know just what to do, stepping in to read to him or help him find a calm space. They also work with him daily on life skills like sorting and organizing laundry or stacking cups and silverware.
At SOAR365’s Children & Youth program, Gavin gets to explore his community on group outings (fishing, bowling, baseball, grocery store, movies, and more) and make lasting friendships. Most importantly, his mom can trust that he’s getting the mobility assistance and other safety measures he needs to thrive.
“Gavin needs lots of support,” Amy explains. Alfi’s syndrome not only affects how he communicates, but also causes low muscle tone, changes in mobility, and global developmental delays.
“He’s curious, he’s happy, he’s affectionate. And he needs a lot of help with the activities of daily living. These are things like eating, walking around safely, toileting, dressing, interacting with peers — everything really.”
SOAR365 DSPs are experienced in handling all of Gavin’s support needs, which gives him more independence and allows Amy and the rest of their family to live a balanced life. Amy is passionate about her work as the Executive Director of Rx Partnership, a non-profit that helps provide medication access to vulnerable Virginians.
She shares, “I love my work. It really is important to me to give back to the community in a meaningful way. It feeds my soul in a way that helps me be a better parent.” Amy also serves on the board of the Arc of Virginia, as well as being involved with Impact 100 and the VCU Alumni Council.
“These are things that are important to me It’s a life that I can have because of the supports that I have in place,” says Amy. In addition to friends, neighbors and family, she knows she can count on SOAR365.
“That’s one of the things that SOAR gives me, that stability. It just takes such a weight off me to know that I can do the things that I need to do, like chauffeuring my daughter around to all of her activities. It’s really important for all of us, not just me as a mom, but for our family, to have those typical things in our life and to have a child with disability who also has that support and family life that they need.”