Janice Foss isn’t afraid any more. Her daughter Shawna (pictured center) is thriving.
Shawna is a charming woman with a soft voice and a big presence. She lives with her shared living providers, Jagannath (Jackie) Khadka (pictured right) and Deena Gurung (pictured left) and their three children in Manchester, NH.
In the nearly 10 years Shawna, Jackie and Deena have shared a home, they’ve navigated a lot of life together. Jackie and Deena had two babies, they all moved to a new home, and they endured an unexpected separation during the pandemic when Jackie and Deena were stranded overseas with the children.
Janice couldn’t imagine when Shawna was younger that she could safely be around young children, much less live with a young family. Shawna adores “the babies.” You can see that love in how she comforts the littlest one when he feels shy, rubbing his back and talking to him. Her care for all the family members shows when she reminds Jackie to buckle his seatbelt or reminds the siblings that they’re not supposed to fight.
Shawna loves to connect to other people. She’s active participant in Aspire Online for several classes a day, and she’s getting back to her photocopying job at Aspire’s Merrimack office. Shawna makes jewelry to give away and prides herself on being a good friend. Someday she wants to work as a companion for people who use wheelchairs.
Shawna has made great strides in her physical health. She used to need a wheelchair. Now that she’s more than 100 pounds lighter, she takes long walks using a walker. But she still looks forward to her “cheat day” on Saturday: “We get Chinese food!” In the past she had been hospitalized frequently for pneumonia and asthma, and her lungs are healthy now. She’s had some back issues more recently, but she’s been a trooper through a variety of treatments with support from her mom and the providers.
Janice vividly recalls the long days and nights more than a decade ago when Shawna struggled. There were many frightening moments when Janice and the rest of the family were at risk of getting hurt when Shawna lost control. “I would just cry. Watching your child be in that much pain, trying to talk to her but knowing you can’t get close to her. I’d have to call 911.” When Shawna left home to reside in a group home, things didn’t get much better. By the time she came to Aspire, Shawna had three staff with her at all times.
Jackie agreed to become Shawna’s home provider with help from support staff and a behavior analyst to ensure everyone was safe. The first years were challenging. He reports, “It took time to understand each other. We learned to talk to each other as friends and then family. Shawna can tell us now what she feels.”
They’ve come to realize everyone needs the opportunity to really connect, and also time and space when they need it. Life isn’t perfect, but they work through conflict when it happens. Jackie says the most important thing for a new provider is to “stay calm and cool, and listen.” Shawna interjects that what new DSPs need most is “training.”
Their commitment to each other and their close connection with Shawna’s family have kept them going strong through life’s changes and now the pandemic. Janice realizes, “For the first time I see Shawna with an adult independent life… I’ve seen so much happen that I couldn’t envision, it’s amazing. Jackie and Deena have really hung in there, especially when it was so hard in the beginning. Now I can breathe and just trust. There can never be enough gratitude to everybody that’s been involved with her.