DEFIANCE — Step inside Kaitlyn’s Cottage behind ProMedica’s Defiance campus and the high ceilings, granite countertops and rich wooden floors will wow you.
That is, if the front deck that winds around the wood and stone exterior of the building hasn’t already.
But here, tucked away from the hospital hustle and perched at the edge of a dark and tall forest, what truly matters is the space to roam those wooden floors and the messes that will soon pile up on those countertops.
Kaitlyn’s Cottage opens June 26 to serve as a respite center for 16-to-40 year olds who have intellectual and physical disabilities. Guests can visit for a few hours or stay overnight in one of the four bedrooms. Staff will work with guests on a one-on-one basis, offering two frequently changing scheduled activities daily, said Marsha Kott, the program manager.
The building cost $1.9 million, an amount partially subsidized by ProMedica Defiance Regional Hospital, funded by donors and mostly fueled by Sharon and Dan Farrell, a Defiance couple who has an 18-year-old granddaughter with a disability. Her name is Kaitlyn.
Kaitlyn Shock
The two also started an endowment fund, which has accumulated $1.5 million, to help families afford to send their relatives to Kaitlyn’s Cottage.
“This is an idea that I thought about years ago and it was because of our Kaitlyn, seeing a need for a place like this,” Sharon Farrell said. “When young people like Kaitlyn come out of school, there’s nothing left, there’s no place … nothing for them to do … there are no options.”
Filling the gap
Parents of children with disabilities often struggle to fill the gap during the period following high school graduation. They are faced with finding a new social outlet for their kids or new programs to challenge them, said Frances Diehl, director of respite services for those with disabilities at Kaitlyn’s Cottage.
She said her little brother had a disability and her family saw him regress as her parents searched for a new outlet for him once he graduated.
Kott said the chance to socialize becomes strained after graduation.
“As they exit the school setting, if they don’t have the option to go onto other workshop settings and things like that, they’re limited to as to their friendships and the people they can be with,” she said.
Parents also suddenly have less time for themselves — not that they had much before — and couples often struggle to find time for a simple dinner date. Farrell said Kaitlyn’s Cottage gives parents the opportunity for their own respite.
But it’s difficult for parents to feel comfortable leaving their offspring with strangers, sometimes even at respite centers, said Cris Shock, Kaitlyn’s mother. She, her spouse Josh and her three daughters are a unit, and they all know how to communicate with Kaitlyn, she said, whereas strangers might not.
Kaitlyn has Rett syndrome, a nervous system disorder that leads to development reversals particularly in language and hand usage. The disorder almost exclusively affects girls. Kaitlyn does not talk, has never walked and has limited function in her hands, but Shock said she always knows what Kaitlyn is thinking because of her expressive eyes.
The staff at Kaitlyn’s Cottage learned communication styles firsthand through more than 40 hours of training. Kott said she assigned each trainee a particular disability to prompt the individual to problem solve just like their future guests. Kott gave the group sparse help, pushing them to decipher which communication cues would work to get the attention of their caretakers. For example, Kott left one “non-ambulatory” and “non-verbal” trainee in the kitchen alone so she had to figure out how to alert Kott that she was left behind.
After the exercises, the group discussed how it felt to be excluded. The idea is that once the employees know how they communicated thoughts when saddled with a disability, they would be able to pick up on those same cues from their guests.
Freedom of choice
Communication enables one of the most important aspects of Kaitlyn’s Cottage: choices.
“I’ve had students who were growing up in an environment where they’re afraid to say no and the first time my one guy said ‘No,’ I was thrilled,” Kott said. “It’s that freedom of choice — making a purposeful, functional concrete decision.”
Scheduled activities for a day might include making pottery, baking cakes, making crafts, playing music or engaging in games. For guests who have limited control of their hands, the staff can use objects that are activated when the guest pushes a button, such as a pair of electric scissors that the employee holds but depends upon the guest to power them.
But Kott said staff will ask guests if they want to partake in the activities or do something else. If someone needs quiet time, a reflection room flanks the living area for some solitude. The guests who cannot communicate with words will use cards with icons. The trained staff can notice which icon the guest prefers based on the guest’s eye contact, Kott said.
Kaitlyn just graduated with her class from Defiance High School; she will continue attending school until she is 22-years-old. After that? Shock said she feels comforted knowing that Kaitlyn’s Cottage will be waiting.
