What Mantoan didn't count on, however, was that she would find few diocesan offices had staff members responsible for ministry or formation with disabled Catholics.
Still, despite those initial difficulties, the first conference was an encouraging start, she said.
Several dozen parents came to Mater Ecclesiae Church in Berlin, NJ, for the April 27 conference, and a larger remote audience streamed online.
The conference featured a series of talks and expert panels by author Mary Lenaburg, David Rizzo, creator of the Adaptive First Eucharist Preparation Kit, and National Catholic Bioethics Center ethicist DiAnn Ecret, onhand to provide insight into complex ethical scenarios including adverse prenatal diagnoses and known genetic susceptibility.
Rev. Matthew Schneider, the priest behind the Twitter handle @AutisticPriest, was also in attendance. Since announcing his autism diagnosis this spring, he has started a YouTube channel where he speaks openly about his life and ministry through the lens of autism.
Mantoan called Schneider, who live-tweeted the event, "a real ray of hope to parents of autistic kids who are wondering what the future may hold. He advocates for those with autism, but also speaks from the perspective of a priest and offers a unique insight on how to make parishes more open to disabled people."
Keynote speaker Mary Lenaburg reminded attendees "my daughter - your children - are heralds for a new world … our children show us the face of God every single day."
Looking toward next year's event, Mantoan said, "I have to work at getting the word out more in advance so it's not such a surprise – logistics, not being well-known or established...it's a work in progress, and there is no major network for Catholic special needs parents to connect – so we're asking ourselves, how can we connect and share resources?"
"Many special needs parents are full time caregivers. They can't leave. They can't fly somewhere for multiple days of travel for an event. They are on 24/7. That's who we most want to reach, and that's why we streamed the content," she said.
"This is for the frazzled stay-at-home caregiver who feels like they really can't get out, for whom it's so hard to get that face to face support."
"I know what it's like when you have a lot of little kids, a lot of special needs kids, you might feel isolated, might be the only special needs family in your parish," she explained.
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When asked whether other factors affect Catholic special needs parents uniquely, Mantoan pointed out that family planning can be a big difficulty and source of stress.
"In so many families, you have a special needs child - especially with a grave medical condition, and that's it, you're done. You get sterilized, you stop having kids."
Mantoan continued, "If you're a faithful Catholic and you have kids with genetic diseases or you are disabled with a genetic disease that makes childbirth dangerous, if you have a large family with disabilities, do you keep being open to life? How do you manage special needs parenting and continue living your life?"
"For us, for a long time, the whole family planning aspect was a huge struggle...When we got their diagnoses, it was like, oh, I have a 1 in 4 chance of having a child who also carries this disease."
"It was difficult for a long time," Mantoan admitted.
"Probably I can say within the last 3 years we've finally reached a point of peace. Basically up until that point, we were doing what the Church taught because we knew it was right, but we weren't happy about it."