by Joe Bollig and Deacon Jim Lavin
OVERLAND PARK — For most Catholic families, going to Mass together is simply a given. They do it every Sunday.
But for Sean and Jennifer Garrison, Mass together as a family was an impossible dream.
“My husband and I are converts,” said Jennifer Garrison, a member of Good Shepherd Parish in Shawnee. “We pictured raising our children in the church and going to Mass together.”
The Garrisons have four children. Nathan, 9, their second oldest, has autism. He’s nonverbal, although he makes sounds and likes to jump and move around.
“With Nathan’s particular issues we really can’t go all together to Mass,” said Garrison. “It got to the point where [either Sean or I] would have to go outside and sit in the car with him or take him home. He just couldn’t sit in the sanctuary during Mass as long as he needed to, or be as quiet as he needed to [be].”
The invisible Catholics
Having a family member with intellectual/developmental disabilities has its own joys and challenges, and one of those challenges is worshiping as a family.
In fact, it can be so challenging that some families go to Mass in shifts — if they go at all. Family members with these challenges simply disappear from the pews and may never or rarely receive the sacraments.
The Lavin family, members of Holy Spirit Parish in Overland Park, knows this well.
Deacon Jim and D’Lise Lavin’s 25-year-old son Steven is severely autistic. Today, he lives in a group home.
“We really don’t attend Mass as a family,” said Deacon Lavin.
Years ago, when Steven was little, the Lavins ended up in “cry room exile.” But even that proved an imperfect solution, because Steven liked to wander out of the room and beyond.
In an effort to provide some sort of religious formation, they’d take Steven to church during non-Mass times.
“We did this just to have him be familiar with Jesus and the altar,” said Deacon Lavin, “and try to make him familiar with the [church] environment.
“We did it to keep introducing Christ to him.”
Theirs was not a new or rare problem.
In the early 1960s, Delores Lebbert, a Catholic and an EEG technician at the Kansas Neurological Institute in Topeka, noticed that the Catholic residents of KNI were not receiving any spiritual formation or the sacraments.
The difficulties were such that families stopped taking their children with intellectual/developmental disabilities to Mass. Over the years, many Catholic children at KNI had not even been baptized, much less received the sacrament of reconciliation or first Communion.
Lebbert’s desire to help these children and their families led her to spearhead the founding in 1973 of REACH — Religious and Education Activities for the Community Handicapped.
The program provided Mass, religious education, sacramental preparation and social activities. It spread throughout the archdiocese and later to 47 dioceses in the United States and the world.
Eventually, the program atrophied and ended in the late 1990s. Although Lebbert died in 2013, she and REACH were not forgotten.
Men with a mission
New opportunities for persons with intellectual/developmental disabilities and their frustrated families came about in the most indirect way: a party trip to New Orleans.
Kevin Hill, John Johnson, Javier Pedroza and David Tokic traveled to New Orleans this past spring to celebrate their 50th birthdays and attend the New Orleans Jazz Festival.
While they were there, the four men (all members of the Savior of the World Seminary Class of 1984) went to Mass at St. Peter Claver Church in the Treme neighborhood.
“The priest [in his homily] stressed the importance of making a difference in our world and to listen to the Holy Spirit when he is calling us to action,” said Hill.
Later, the four sat in a courtyard and talked about how the priest’s message tore into their hearts. They felt that the Holy Spirit was calling them — to restart REACH.
Not only did some of the men have family members with special needs — they’d also served as REACH volunteers.
After returning from New Orleans, the four contacted Father Bill Bruning at Queen of the Holy Rosary Parish in Overland Park. Father Bruning had celebrated REACH Masses as a young priest.
They shared with him their Holy Spirit brainstorm — and how they were interested in starting up a program they would call iCARE — Inclusive Catholic Activities and Religious Experiences.
“Seeing his passion toward our mission, we followed it up with presentations to the archdiocesan special-needs task force and the pastoral council at Queen of the Holy Rosary Parish,” said Hill, a member of St. Ann Parish in Hiawatha.
After much planning, the first iCARE Mass was celebrated on Sept. 24 at Queen.
Something just for us
Some persons with intellectual/developmental disabilities and their families can and do attend a parish Mass together. An iCARE Mass, however, offers them so much more.
Terry and Mark Young have a 17-year-old daughter with Down syndrome. Amanda is a junior at Hayden High School in Topeka, so she goes to school Masses all the time. The family also attends Mass at Most Pure Heart of Mary Parish in Topeka.
What makes the iCARE Masses different is that they are “adaptive,” said Terry Young.
“What’s great about iCARE Mass is that they slow it down and the kids can participate at whatever level they are,” said Young, who was a REACH volunteer in the 1980s.
“It’s nice to have a priest explain the vestments and what he is doing,” she continued. “It’s geared at a level that is very participatory for them, so it becomes more meaningful for them. Everything is done at a level that is appropriate for those who are developmentally disabled.”
Participation is the key to engagement — and letting persons with intellectual/developmental disabilities know the iCARE Mass is just for them.
“At the iCARE Mass, all the ministries are by the disabled,” said Hill, whose three relatives — two sisters and a daughter, Lauren, 21 — are persons with intellectual/developmental disabilities. “We have them involved as servers, ushers, gift bearers, lectors — and they help dress the ‘Jesus table’ (altar) where they help [the priest] with the book and the candles.”
The Scripture readings are simplified, as are the homily and the music. For the recessional hymn, all the disabled persons are given musical instruments like maracas and tambourines and are encouraged to join in.
Another benefit of the iCARE Mass is that the participants are welcome to verbalize and walk around as they please. These behaviors are not frowned upon, but accepted.
A social activity — like a meal, bingo or a dance — is held after the Mass.
“[iCARE] gives [persons who are intellectually/developmentally disabled] a Mass and social setting that is comfortable for them, and where they can participate fully,” said John Johnson, a member of Queen of the Holy Rosary.
Was it worth it driving Amanda all the way to Overland Park from Topeka for the iCARE Mass? Very much so, said Terry Young.
A sense of belonging
Sometimes other people forget that persons who are intellectually/developmentally disabled want and need a sense of community and belonging, too.
Mark and Melanie Savner, members of Holy Angels Parish in Basehor, take Mark’s 53-year-old sister Shelly Savner to church. Shelly has Down syndrome.
“Every Sunday, Shelly sits by us at Mass and likes to have her own missal, even though she can’t read,” said Melanie Savner, an administrative assistant in the archdiocesan vocations office. “Her favorite part is putting the offertory envelope in the offering basket, because it’s a way she can participate.
“Once in a while, she’ll see one of her special friends after church, and she’s so excited to talk with them. Unfortunately, she rarely sees one of her [Down syndrome] friends.”
One of the most touching scenes Hill saw at an iCARE Mass was at a reunion.
“My oldest sister Kristi was in the REACH program in the 1970s and 1980s,” said Hill. “There was another lady her age [with Down syndrome] who was in Camp Fire Girls with her.”
“They hadn’t seen each other for 40 years,” he continued, “and [they met at] the iCARE Mass. It was like they hadn’t missed a beat. They just hugged each other and asked [how each other] was doing. It was great to see their sense of community with each other.”
Tom Racunas, the lead consultant for the archdiocesan special-needs ministry, went to his first iCARE Mass in October. Although he and his office are not a part of iCARE, he wanted to be supportive and observe the ministry.
“It was certainly grace and Spirit-filled,” said Racunas. “I saw a lot of happy faces . . . and lots of grateful faces, too.”
Although the church has made a lot of progress in terms of inclusive practices for persons with intellectual/developmental disabilities, families can still feel a sense of isolation and disconnect from their parishes because their lives are different and they face so many difficult challenges and stresses.
That’s why iCARE is as important for the families as well as those with intellectual/developmental disabilities, he said. They need mutual support and community, too.
“If they’re a minority in their parish, especially if they’re in a large parish, it’s difficult to connect with other families,” Racunas said. “This provides an opportunity for families [with members who have developmental disabilities] to come together.
“I think their expression is, ‘I’m with others who understand my life, who understand the challenges we face, who appreciate the blessing we have because of our family member with a disability.’”
This kind of encounter ignites a sense of community and belonging that they don’t always feel in their parish or during parish events.
“We all gravitate toward those who have similar interests to ours, or similar life experiences that we can relate to,” said Racunas. “They’re coming together [at iCare] to relate, to build community, and seed support from each other for the issues they have to deal with.”
Jennifer and Sean Garrison took only Nathan to their first iCARE Mass.
“The next Mass, we brought all our kids,” said Jennifer Garrison. “We didn’t feel so singled out and under a microscope. At iCARE, we can relax and enjoy Mass a bit more without having to micromanage the behavior of our child.”
Nathan enjoys the iCARE Mass and social activities, as do the Garrisons’ other children. The iCARE experience has been so good that Jennifer is working with her parish director of religious education to spread the word.
“For a long time, I was in despair and didn’t know what we would do,” she said. “[iCARE] is the answer to all the questions and worries I had.
“iCARE is the answer to my prayer.”
For more information, go to iCARE of Northeast Kansas on Facebook.