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Karrie's Castle: A Palace of Independence for Six Special Women
It has been two months since the emotional evening when Marcy and Ed VanZandt, of Castile, kissed their daughter Casey goodnight for the first time at her new home on Morse Street in Dansville. Casey had spent nights away from them before, but this time was different. For the first time in her 25 years of life, Casey’s independence was official. She would have an entirely new mailing address at a residence some 30 miles from her mom and dad. Casey was about to experience all of the thrills, nervousness, and responsibility that accompany independent living.
In some ways, the VanZandts farewell that early December evening was typical; in others, quite extraordinary. Marcy and Ed had already watched two sons go off to college, so the tears and proud feelings associated with children “leaving the nest” were familiar. Setting Casey’s departure apart was the particular significance of her accomplishment. Born with developmental disabilities that affect her language skills and other capacities, Casey – with the support of friends, family, and The Arc of Livingston-Wyoming – had overcome many extra hurdles on this journey to residential independence.
“The first night was very lonely, with lots of tears,” Marcy says. “Part of the tears came from knowing that things had changed forever, as we felt with each child that left. Part of the tears came from not knowing what Casey was thinking about this whole thing. Did she think we abandoned her? What was going through her head? But after checking with staff on Casey’s first night and finding out that she was doing a lot better than her parents with the change, I started to feel a little less sad. We felt relief knowing that Casey was with friends and she was being well taken care of."
Casey’s handicap-accessible, ranch-style home at 10 Morse Street is the newest of 14 residences operated by The Arc of Livingston-Wyoming, the two-county region’s largest not-for-profit agency serving people with disabilities. She lives there with five other women in their early 20s through late 30s who are also making the transition from their family homes into an Individualized Residential Alternative (IRA). An IRA is a specialized group home designed to serve individuals who are able to live on their own with the aid and support of trained staff.
Officially named the Deiter IRA, the house is dedicated to the memory of Karrie Deiter, who was to live there. A dear friend to residents, their families, and staff, Karrie passed away on September 11, 2007, while her new home was being constructed. Internally, the IRA is affectionately referred to as “Karrie’s Castle.”
Miranda Snyder, 28, has lived at Karrie’s Castle since it opened on December 3, 2007. Miranda also had some difficulty saying goodbye to her family, but, like Casey, quickly embraced her new found independence. “I was a little homesick that first night,” Miranda says. “My mom was a little nervous, too. She told me, ‘I can't wait to see you again!’ But now I like it – a lot. It's a new experience for me. I can be my own person.”
Before moving into her new home, Miranda had lived in Nunda with her mom and sister. Not having them with her on a day-to-day basis has resulted in some big lifestyle changes, Miranda says. “Mom's not there to pick up after us,” she explains, laughing. “The girls need to do the cooking, cleaning, and laundry.”
Responsibilities that include sweeping, mopping, garbage duties, and all other household chores are rotated among residents on a regular basis. In the kitchen, they prepare nutritionally balanced meals in accordance with a cycle menu developed through the Arc’s Nutrition Services department. Since moving into Karrie’s Castle, Miranda has lost at least 18 pounds through healthy eating. (Miranda also receives Medical Nutrition Therapy through Nutrition Services, and has lost a total of 45 pounds since March 2006.) “I called my mom to tell her that I lost weight, and she joked that she wouldn't recognize me the next time she visited,” Miranda says. “I don't like Brussels sprouts, broccoli, or spinach – but I eat stuff made with spinach if I don't know it’s in there. The meals are very good.”
The Arc staff members at Karrie’s Castle also earn high marks, from both parent and resident perspectives.
“You have to understand, these girls are coming from families that have been very involved in their lives. None of us went into this decision lightly,” Marcy says. “The staff have had to guide us through the emotional separation and at the same time give us the confidence that they will do everything in their power to make the transition an easy one for our girls. Even before the girls moved in, the staff came to meetings to answer questions, sat with us patiently and listened to us relay daily routines and tell about quirks our girls may have, let us cry, and they did everything in their power to help us feel confident that the care they would give our daughters would be nothing but the best!”
“The house staff are funny,” Miranda adds. “They make us laugh, and play a lot of games with us. Our activities include scrap booking, game night, movie night, and eating out. You name it, we have it on our community schedule.”
In two months, Karrie’s Castle has transformed from a house to a home for its six residents. Today, laughter, confidence, and camaraderie replace uncertainty as residents and families continue to make strides in a journey of independence.
“It’s most exciting to know that our daughters are among friends,” Marcy says. “They are going places and making choices. For example, Casey always traveled with Ed and me, whether she liked it or not. There were times when she would want to stay home but because we don’t have family in the area to stay with her, this was not always an option. Now she can make some choices. At the same time, Ed and I can go places and do things that never interested Casey, while knowing that she is happily doing her own thing. It gives us great peace of mind.”
“Looking forward 10 years, I’m hoping Casey will be where she is now,” Marcy continues. “I hope she will be more independent and will continue to work on different skills. I hope she will be a good advocate for herself, and I hope she will continue to make friends and enjoy life.”
Miranda’s 10-year plan is a little bit more specific, but certainly in the same spirit of fun, friendship, and increased independence. “In 10 years, I would like to be vacationing in Nashville, Tennessee, watching a Kenny Chesney concert,” she says.