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Parents told: God cares, Church cares for children with disabilities

First-of-its-kind retreat provides spiritual support, lets parents know ‘I’m not alone’

HIALEAH | At the first “God’s Perfect Design” retreat for families with children with disabilities, Viviana Vargas found vital spiritual support, solidarity and strength for the journey in raising her beloved 6-year-old with non-verbal autism.

The retreat assuaged the sense of isolation she has felt in navigating the labyrinth of information and services on the Internet and in the community.

“I’m not alone, trying to trust in God, not on my own effort. It’s OK to be scared, it’s ok to cry. I need to have faith. It’s his child, not mine,” said Vargas. “You have to struggle a lot to find information and support. There was nothing. This is the first thing I’ve found spiritually. It’s very important.”

While her autistic son has never spoken a word, Vargas takes him to Mass — with hesitation. “If he misbehaves when in Mass people turn around and are looking at you because he’s not quiet or he’s clapping or laughing. I heard someone once say I shouldn’t have been bringing him to Mass. People don’t understand. I hope this retreat continues.”

Lydia Ocasio-Stoutenburg, speaker and organizer of God's Perfect Design retreat, raises her hands imitating her son's praise when he saw the image of Our Lady of Perpetual Help.

Photographer: CRISTINA CABRERA JARRO| FC

Lydia Ocasio-Stoutenburg, speaker and organizer of God's Perfect Design retreat, raises her hands imitating her son's praise when he saw the image of Our Lady of Perpetual Help.

For all moments I love you: Alex Suarez shares the story of his autistic son, Nicholas, and their family during the God's Perfect Design retreat held Feb. 4 at Immaculate Conception Church in Hialeah.

Photographer: CRISTINA CABRERA JARRO| FC

For all moments I love you: Alex Suarez shares the story of his autistic son, Nicholas, and their family during the God's Perfect Design retreat held Feb. 4 at Immaculate Conception Church in Hialeah.

The retreat, held Feb. 4 at Immaculate Conception Parish in Hialeah, was anchored by Mass celebrated by pastor Father Manny Alvarez and prayer before the Blessed Sacrament. It drew over 30 family members of children with a wide range of developmental disabilities. They came from Oakland Park to Kendall, and relished the opportunity to network in Christ’s name and share stories with others facing similar challenges.

Above all, they received spiritual nourishment, encouragement and affirmation of the retreat theme — God’s perfect design of their children with special needs.

Lydia Ocasio-Stoutenburg, whose fifth child has Down syndrome, conceived the retreat after a Philadelphia retreat director suggested she start one in Miami. “I said, ‘I’m just a mom.’ She said you’d be perfect because you know how important it is.”

Then in prayer she thought of her friend Raul Escarpio, a college professor who prepares special education teachers, and who serves with her on the Parent to Parent of Miami board. Together, she and Escarpio, who provides support to archdiocesan schools on serving children with special needs, planned the retreat.

Daddy's girl: Demi Espinosa embraces her father, Daniel Espinosa, during the God's Perfect Design retreat.

Photographer: CRISTINA CABRERA JARRO| FC

Daddy's girl: Demi Espinosa embraces her father, Daniel Espinosa, during the God's Perfect Design retreat.


Mary’s inspiration

Ocasio-Stoutenburg described in a talk how she found inspiration in Mary while raising her son with Down syndrome. She first cried at the hospital on learning his diagnosis, doubting she could meet his special needs. But in saying “thy will be done,” she remembered Mary’s ultimate trial of motherhood.

“That is the point where I began to live my life for my child, through my child, and for everyone else’s child — I take this on,” she said. “There may be sorrow that no one can comfort but there is joy that nobody in this world can remove, that we know about, (that) we see when we look into the eyes of our children.”

She encouraged the depressed to increase devotion.

“Pray when you don’t feel like it. Pray when you’re tired, pray when it’s hopeless,” she said. “Every time you feel alone and if you have no one, you always have him to lean on, lean on his cross. He is with you on your way of the cross that you will have at many times in your life. And remember she is there with you. Anything you ask of her will not be denied because of her love of you, her love of mankind, because she loved her Son. So have hope and have courage and reach out to those around you.”

Speakers Alex and Elisa Suarez have an 18-year-old son with autism.  

“One of the main messages was about accepting the challenges and suffering that come with facing the obstacles that come in having a special needs child or family member,” Alex Suarez said in an interview. “It’s finding hope and never letting go of the hope that our kids will be ok because they belong to Jesus. And I think that God is inviting us to be extraordinary families. He hasn’t chosen to give this invitation to everybody.”

That trust involves surrendering to God’s will. “From the beginning it definitely helped facing the autism of our son in giving up our plans or dreams or whatever they may be to whatever God’s plans or dreams are for him,” Suarez reflected. “It has deepened our faith and let us experience joy and intimacy as a family at a level we never would have gotten to.”

Their son, who attends South Florida Autism Charter School, participated in a special religious education program at St. Theresa School in Coral Gables and now completes a one-on-one confirmation program at Our Lady of the Lakes Parish in Miami Lakes. With strong faith he tells his parents he loves them daily.

“When something is wrong or someone is upset or he’s done something wrong he’ll say, ‘I’m sorry dad. Are you happy with me?’” said Suarez. “He teaches me that quality of reconciliation.”

The God's Perfect Design logo.

Photographer: CRISTINA CABRERA JARRO| FC

The God's Perfect Design logo.


‘Little miracles’

While it’s “two steps forward and one step back,” Elisa Suarez described her son’s “little miracles” of progress, even more so since “I’ve been trusting God more with his life.”

And she has found invaluable support through the Catholic community.

“We definitely want to make sure we give back to God and that’s why we’re here today, to be of service to other families that maybe haven’t had the chance to network with other families because we are all in the same situation,” she said. “This is the first of its kind as far as the Archdiocese of Miami for families of special needs children.”

In sharing Catholic resources, Ana and Boris Lodeiro praised the Schott Communities in Cooper City, where they bring their adult daughter for weekly Mass and enrichment activities. And Ocasio-Stoutenburg said her son “thrives” at the Marian Center in Miami Gardens.

Participant Yessenia Gonzalez found comfort. “Sometimes you feel lonely, you feel like you’re the only person going through this. I feel a lot of support. God cares. I’m glad I’m here.”

Luisa Ortega hopes pastors will be more proactive. “I feel pastors should speak to the community to welcome people with children with special needs,” she said. “People struggle everywhere and need to know the pastor is behind them.”


Start reaching out

Jennifer Enlow agreed, having an autistic son who isn’t high functioning. “He was baptized and that’s it. Something inside of me felt so sad. He should have been making his Communion, confirmation. That’s why I was so excited to come to this,” she said. “We need to start reaching out to the children with special needs.”

Gloria Trueba appreciated the Catholic perspective in supporting one of her children, who simply struggles with acceptance issues. “I just want to be a better parent to all my children, to see the beauty in all of them,” she said.

In a closing Mass, Father Alvarez praised parents for lifting up their beautiful children. “We have to bring them in especially to the Holy Mother Church and remind them that they are the body of Christ and all of us belong to the body of Christ. It doesn’t matter if your IQ is high or low, if you walk with a limp or walk straight. We are all part of the greater family of God.”

Afterwards, Ocasio-Stoutenburg reflected on God’s grace. “So many people came together to support this retreat,” she said. “It was really beautiful. It was healing for everyone.”

Coordinator Escarpio said they are now discerning the next step and invite families to attend a monthly Mass that will start in March for families of children with special needs.

“We are sure a ministry is developing as a result of this retreat, one that is needed,” said Escarpio. “I think it’s very necessary for families to know they are valued in the Church, that they are loved by their maker and that there are no mistakes according to his plan.” 

GET INVOLVED

  • Father Manny Alvarez will celebrate a Mass for families of children with disabilities on the first Saturday of the month at 5 p.m. starting March 4 at Immaculate Conception Church, 4497 W. First Ave., Hialeah. All are invited.
  • Families with children with disabilities are also invited to contact Raul Escarpio at GodsPerfectDesign@gmail.com to join an email list and private Facebook page. 

Corrected: Due to an editing error, the original story misidentified Raul Escarpio's career. He is not just a teacher but a college professor who prepares special education teachers.

Comments from readers

Sister Lidia Valli - 02/16/2017 03:17 PM
We participated at it was a great opportunity to share our faith and belief that children with a developmental disability can be integrated with our parishes. We met outstanding parents who now are remembered daily in our prayer. We praise the organizers of this retreat and the warm welcome of Fr. Manny. We hope and pray for more retreat and we have invited all the families who have a child in our program. We will be going to the Mass on the first Saturday of the month. we as Archdiocese of Miami can work together to sustain spiritually parents and children. Kudos!

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