Special-needs ministry offers support, respite to caregivers

by Susan Fotovich McCabe
Special to The Leaven

TONGANOXIE — Mindy and Blake Fortune get a chance to BREATHE once a month — literally and figuratively. The Olathe couple, who are members of Sacred Heart Parish here, look forward to a visit from the Archdiocese of Kansas City in Kansas-sponsored respite program, known as BREATHE, each month. 

An acronym for Bessette Respite Embracing Action Toward Holy Encounters, BREATHE gives families raising children with special needs a night off from the demands of caring for their physical and intellectual disabilities.

The Fortunes have three children with autism — twin 9-year-old sons and a 7-year-old daughter. Ranging from severe for the boys to high functioning for their daughter, Mindy says it can be difficult to take all three to the grocery story, eat out or do other activities other families take for granted.

“The boys are nonverbal and require a lot more self-care, although they have come a long way. It is unbelievably difficult raising one child with autism, so when you have three children on the spectrum, life can be unbearable,” said Mindy. 

“We are blessed to have family support, as well as friends that help us,” she continued. “However, there are times where family and friends are not available, or we don’t want to burn them out.  

“Having a guaranteed one night per month that we know we will get a four-hour break is priceless.”

Always in search of a respite program for their family, the Fortunes discovered BREATHE and began sending their children to it a little more than a year ago. Most programs of this nature are offered through other faiths. 

The archdiocese started BREATHE in 2017. It’s held at Holy Cross School in Overland Park from 4 to 8 p.m. on a Saturday once a month. The remainder of this year’s schedule can be found on the archdiocesan website at: archkck.org/specialneeds. 

“BREATHE is the first we have found that is in our own faith. To have this available in the Catholic Church is priceless,” Mindy said.

Tom Racunas, the lead consultant for the archdiocese’s special-needs ministry, said BREATHE is designed to give parents a break from caregiving in a Catholic environment. Specifically, BREATHE was launched in response to a request from Catholic families who told Archbishop Joseph F. Naumann that one of the things they wanted most from a special-needs ministry was a respite care program — particularly a Catholic program.  

“We send an evaluation form after most BREATHE events and the feedback has been overwhelmingly positive,” Racunas said. “Families have told us in a number of ways that they trust us and know their child will be well-cared for and that they will have had a good time.”

Each BREATHE night includes dinner (and grace before the meal), a prayer service that includes a Scripture reading, petitions and songs. For Mindy, it’s a dream come true.

“Tom and I had a conversation after the first night attending BREATHE,” she said, “and he said, ‘Now we can get the kids started on their sacraments.’”  

“I started to cry,” added Mindy, “because I never thought it would be possible because of their disabilities. It has opened up a new window of possibilities for my kids. And for that, we are extremely grateful.”

Nancy Tjaden, a member of St. Michael the Archangel Parish in Leawood, is mom to 16-year-old Luke. Luke has severe, low-functioning autism. She and her husband Greg rarely get a night out together.

“Luke is pretty severe and has sporadic aggression, so we can’t really leave him alone with anyone,” Nancy said.  “We do have helpers for Luke, but we don’t leave them alone with Luke. 

“We have an older child, Harry, 17, and we take turns going to his events so that one of us can be with Luke all of the time. 

“Since we started BREATHE, we actually go out once a month and totally look forward to the respite, the quiet and the chance to recharge.” 

Even as the Tjadens are receiving this critical relief, they are taking no time giving back.

“Our older son volunteers to help at BREATHE for another child with special needs,” said Nancy.

BREATHE volunteers make all the difference in the world, according to Nancy and other families who send their children to the program. 

“It was amazing to us how quickly the volunteers embraced Luke and knew how to handle him,” said Nancy. “Luke smiles every time we pull into the parking lot. 

“Usually, he does not want to be left anywhere.”

But BREATHE is different. 

“He feels comfortable and always behaves well for the volunteers,” said Nancy. “I am not sure they can totally understand how awesome they are and how much this night once a month means to us and our marriage.”

Many volunteers are aware of the gift they are giving to families of children with special needs. Erin Hampel, a 38-year-old volunteer and member of Curé of Ars Parish in Leawood, said the feedback she gets from parents is “pure gratitude.” Hampel has been volunteering for almost two years. 

At first, Hampel said, the experience was a little overwhelming. 

However, she was quick to point out that Racunas and his support team provide excellent training before and after each event and have nurses on staff to address and help with medical needs. The team also takes copious notes from parents during drop-off.

From there, it’s an evening of free play (outside or in), art projects, music therapy, dinner and the occasional special guest: including firefighters and Santa.

Shawnee brothers Ian and Mason Kelly regularly volunteer. They have a cousin who has special needs. And while volunteering began as a way to earn community service hours for school, the brothers continue to engage on a deeper level. 

“The thing that keeps me coming back are the kids,” said 16-year-old Mason, a student at St. James Academy, Lenexa. “The kids are very fun to interact with and it also gives the kids’ parents free time. That just makes me feel good that I made someone’s day.” 

“If I had to give someone advice about volunteering,” added Mason, “I would tell them to do it because it is fun and a very good opportunity to get experience with kids. It is a very impactful experience on you and the participants.”

Eighteen-year-old Ian, an incoming freshman at Kansas City Kansas Community College in the fall, echoed his brother’s sentiments.

“One piece of encouragement I would give to others is that BREATHE is all about fun and not about work,” Ian said.

Parents generally spend the monthly break catching up on errands or with one another at dinner. It does wonders for their relationship, but it does even more for their children.

“Luke has fun playing in the gym, having dinner, going to the sensory room, doing art projects and having prayer time,” said Nancy.

But mostly, he likes the people because they are so loving and accept Luke for who he is. 

“They always treat him like he is,” she said, “a special guest — a star.”

Want to volunteer? BREATHE needs additional volunteers. Just four hours a month provides tremendous relief to parents in need. To find out more, click here.