At United Way, we know that, when parents have the resources they need, they lift up the whole community with them.
When Karin, Gary and their two young sons moved to Brookfield after years spent living abroad, they had no built-in support system.
A big reason they had moved to the area was to access high-quality healthcare services for their three-year-old son, Judah, who has Down syndrome. The couple are also parents to six-year-old son Asher.
An online search connected Karin with a playgroup for kids with Down syndrome. Through this local network of parents, Karin heard about the United Way-funded Children’s Hospital Community Services’ Volunteer Respite Care program.
“It very much appealed to us having just arrived, figuring out how to live life in a new place - any help we could get was great,” remembered Karin.
The Volunteer Respite Care program offers assistance, support, and guidance for parents of children with special needs. About once per month, Respite events are held where children with special needs and their siblings are invited for a day of fun and play with local volunteers. During this time, parents are free to do what they like - run errands, do the bills, or just enjoy some much-needed rest.
“A lot of other organizations do provide respite care, but solely for the child with special needs (not siblings),” said Sondra Russell, Volunteer Respite Care program coordinator at Children’s Hospital. “The relief families seem to feel when they hear that the program is free to them, that their children are taken care of and having fun...it’s a positive experience for everyone.”
Of parents who participated in United Way-funded Support for Children & Families programs like Volunteer Respite Care, 96% met people they could talk to or found resources they could use when they have needs and 89% experienced a decrease in stress.
For their first Respite experience, Karin and Gary decided to bring Judah to the event so they could spend a day with older brother Asher, 5 (it was his birthday).
“That day was great, but once Asher went along to the next Respite event, he had so much fun that now he always wants to go!” said Karin.
Sondra loves that the respite events lets kids be themselves: “Volunteers are matched with each child and we have a ton of activities available, and each child gets to pick what they want to do when they want to do it. There is not that expectation of “Now you have to do this” or do what their siblings are doing.”
Sondra also sees the positive benefits for the parents, especially those who may experience feelings of isolation and stress. “Meeting other parents of kids with special needs helps families feel less alone,” said Sondra. “There is a real sense of community with these events - so many people come together to ensure these kids are well taken care of, and parents have the time to take care of themselves, which then gives them the energy to be more engaged with their kids when they get home. It’s great for everyone!”
United Way funding allows Children’s Hospital Community Services to offer the Respite program free to families, no matter their income level. Funding provides nutritious snacks and meals, activities for the kids, and staff time.
“This program wouldn’t exist without United Way donations,” said Sondra.
While Karin feels lucky that she was able to find out about the respite program through other parents of children with Down syndrome, she sympathizes with parents who may not have that connection.
“The Down syndrome community is pretty connected, but for parents of kids where there is not a clear diagnosis, or with a rare condition, they may not have that same built-in support,” said Karin. “That’s why I tell everyone I meet - whether that’s in the waiting room with Judah at the doctor or out in the community - about the respite program.”
“Going to the respite events has given us a sense that we landed in a community that truly cares,” reflected Karin. “These volunteers have a lot of other options of what to do with their Saturday, but they chose to be a part of our kids’ lives. It’s wonderful.”
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