This week we hear from Robby Kiley, the Director of Religious Education at Saint Pius X Catholic Church in Granger, IN. He has a brother on the autism spectrum and holds a Masters in Divinity from the University of Notre Dame. He has experience both working in young adult and youth ministry, as well as programming for teens and adults with special needs. He lives in South Bend, IN with his wife, Ann.
Discuss how you grew into an understanding of autism and learned how to become an advocate for those with special needs.
For a long time when I was growing up, I didn’t always see my brother as a person to be respected and loved, but rather as a set of needs and behaviors that sometimes came with perks (like cutting in line on roller coasters and parking closer at the mall). My parents were always great about involving me in my brother’s therapy when possible (for example, while he was doing stretching exercises to help with his CP, I would get involved and help turn it into a game where he had to chase me), and they also taught me from a young age how to talk with my peers about my brother’s disability (for example, I gave a presentation to my elementary school class for disability awareness week with my mom’s help). The seeds of advocacy were planted early, but it took some time for me to grow into a true advocate.
In my teen years, I began to practice my faith more deeply. This corresponded with the realization of my brother’s inviolable dignity and a change in our dynamic. My attitude towards my brother began to change. This continued into college, when I studied psychology and theology and took practicum courses on Autism and ADHD. At this time, I still resisted the phrase “advocate” somewhat, because it felt like the shape of my life was being determined by my brother’s disability. Everyone assumed that I would go into a profession helping people with cognitive disabilities, and my young adult self rejected that determinism. With more time and maturity (and more experience, volunteering and working in adult day programs and group homes), I was able to integrate my desire to be an advocate with my other passions. Today I teach and write on Theology and Disability and share with others about what it truly means to be made in the “image and likeness of God.” It was wonderful to find a job where I can continue to mesh these interests, and our adaptive catechesis program at Saint Pius is usually the highlight of my week.
What special challenges did you face as the sibling of someone on the spectrum? How did you address them?
I mentioned this feeling of “determinism” above, and that certainly came into play. As a sibling of someone with a cognitive and physical disability, I learned compassion and patience early on (the only other option was anger and frustration – although sometimes those were easier paths to take!). Because of my temperament, people assumed I would enter the care-giving field, and I rejected that somewhat out of hand at first. I needed to come to that decision on my own, rather than having someone make that for me.
There were other typical challenges – fear of rejection by peers, shame for behavioral outbursts, etc. These impacted my little sister a bit more than me, but I will admit that I was a little afraid the first time my wife met my brother – how would this change our dynamic, how would she react? I had nothing to fear – she learned early on that loving me also meant loving my brother, and I’m extremely grateful for that, but those sort of nagging fears and insecurities crop up from time to time.
Discuss your current professional pursuits related to autism.
Currently I work as the Director of Religious Education at Saint Pius X Catholic Church. I oversee the faith formation of over 600 students in after-school programs. A small slice of this program is our adaptive religious education group, the Children of Saint Angela Merici (CSAM) (the patron saint of people with disabilities). While CSAM is a tiny portion of our program, it is what gets me most excited about my work. I began at my parish as a volunteer catechist with the CSAM program, and the highlight of my first year as the DRE at Saint Pius was the sensory-friendly First Communion Mass that we celebrated with our CSAM students.
I also occasionally lecture at our nearby Catholic colleges on Catholic Social Teaching, Disability, and issues associated with human dignity.
How does the CSAM program at St. Pius specifically serve those with autism? What does a typical program day look like?
The CSAM program is tailored to the students in the class. There are a mixture of students with different levels of cognitive functioning in each class, so the routine and class make-up is varied. Students attend class with a parent or aide, and all of our catechists have some experience with special education or occupational therapy.
The class is a blend of Catechesis of the Good Shepherd, a Montessori-based religious education program that is very hands-on, and a program called Adaptive Finding God through Loyola Press. For our participants with autism especially, our catechists help develop comforting routines (for example, one student has a love of water, so she begins every class using a hand-washing work), and we use visual schedules and other adaptive tools to help track progress in class (and to teach about things like the Mass and Reconciliation). Many of our families take the visual schedule tools we use with them to Mass, and they’ve reported better participation using these resources!
Why is it important for programs like CSAM to exist?
One of the principal tenets of Catholic Social Teaching is the so-called “Preferential Option for the Poor and Vulnerable.” The idea is that those who are valued least in society are those that most deserve our time, attention, and care. Jean Vanier, the founder of the L’Arche communities, has often said that he believes that people with cognitive disabilities are some of the most vulnerable people in our society. As a Church, if we affirm that every life is sacred and that every person is made in the image of God, our actions must reflect these truths. While some days it may be difficult, opening up the sacraments and the beauty of our Church teaching to children with cognitive disabilities is an important way to “walk the talk” of our beliefs.
What advice do you have for other parishes who don’t have a faith development program for children or adults with disabilities, but are interested in exploring the idea? What are the most significant obstacles?
Simply put, if you are not doing anything for children with disabilities at your parish, you should be. When I talk to other DREs, I hear many reasons for not doing something. Some tell me that they don’t have any families with children with cognitive disabilities at their parish. This is a horrible assumption. Many families of children with behavioral issues are only able to attend Mass sporadically or sit in the last pew – but that does not mean they are not there! If you don’t see anyone with a disability, ask yourself why this might be the case? How can you be more welcoming to families of children with special needs? When one of my current catechists discovered that we had the CSAM program, she was floored – they had been through five parishes through several moves, and never had they found something for their middle daughter with autism. When she heard that we offered something (and that we would help prepare her for her First Communion), not only did she almost cry for joy, she also rushed to volunteer for everything!
Accompanying children with disabilities does not require a program as fleshed-out as CSAM. Simply offering an aide to accompany a child in traditional CCD or providing families resources for home schooling and inviting them to parish events might be a good start. There are wonderful resources coming out now for parishes interested in bigger programs, however. I can’t recommend the Loyola Press materials highly enough.
Most importantly, however, whatever you do – do not keep children with cognitive disabilities from receiving the sacraments. Do not let any rational-cognitive bias on your part allow you to decide that a child is not worthy of receiving the Eucharist, the source and summit of our faith. Many of our families have heard this from someone before or worried about it themselves – can my child receive the sacraments? The answer is YES! Be constant in affirming this – you might be the difference between someone growing in their faith or leaving altogether.
Do you have any advice for teachers of autistic children either in a religious education program or a general education classroom setting?
There are things I’ve learned with each child I’ve taught. But the biggest lesson has been to treat every child as an individual. Learn their likes and dislikes. Find what excites and motivates them. Some children thrive with structure, some need space. There are many wonderful tools out there, and I’ve certainly benefited from them, but this was the best advice I ever received. I also love the way that our program invites and involves parents.
Sometimes younger and older siblings are also along for the ride. Watching kids learn with their whole family unit together has been so wonderful, and the celebrations when we reach a milestone are that much more joyous with everyone involved!