Raising a child with differences is a journey we cannot plan for nor predict. Families formed both naturally and through adoption can find themselves in these life-changing situations. Our children with challenges are critical members of the Church and needed to fully reflect the mosaic of God.
In an April 2024 address to the Pontifical Academy of Social Sciences, Pope Francis noted, “Persons with disabilities are fully human subjects, with rights and duties.” The pope added that when people are “born with or develop limitations, this does not detract from their great dignity as human persons.”
While Church leadership and the Catechism of the Catholic Church embrace our loved ones with disabilities, the real-life journey can be lonely and overwhelming. Our families who experience exclusion and inaccessible faith communities can easily fall away from the Church.
While it is difficult to see God in these lonely, painful moments, it is possible to pour a foundation of faith for the entire family. It takes trust but every member of the family can access God in their own way. Children’s books, action figures, comic books, “Veggie Tales” DVDs or prayers through song are all great ways to explore.
Breaking down complex ideas into smaller thoughts was the key to our steps of understanding. The Holy Trinity was explained through song. The depth and immensity of God’s power was illustrated in creation, in explaining to our son Jacob that “the same God that made this ocean made you! He loves you as deep as the ocean and as wide as the sand.”
Jacob, who lives with Autism+ and Mental Health diagnoses, finds God in different ways and new spaces, sometimes in nature, at a concert, in church or in the middle of the day.
I remember one time when he was about 12 years old, and we were stopped at a red light. Sitting silently in the car, I heard him gasp. Looking around carefully, I didn’t spot anything alarming, so I measured my reaction.
“Hey babe, what’s up?” I asked.
“I just felt really warm all of a sudden,” he replied. “I think God just came inside the car and hugged me.”
Well, now I was in tears and trying to avoid going up the curb! What a beautiful moment, spontaneous and rich in trust and love.
We attended church on the weekends, but the abstractness of God can be difficult for literal thinkers (well maybe all of us). We never really knew what or how he was feeling God’s presence until that moment.
Allowing our loved ones to experience God in their own way is our duty and our gift to our children. Maybe they will, maybe they won’t, but establishing the habit is key. As with all kids, be careful with expectations, comments and judgments about how they express (or don’t) their ideas about God.
Where it all started
Jacob was baptized and made his First Holy Communion at the Shrine of the Sacred Heart in Washington, D.C., and he received the sacrament of Confirmation at St. Rose of Lima Parish in Gaithersburg through their Adaptive Religious Education program.
We started our faith journey when he was very young, and it was not easy. But I knew that every weekend when I’d schlep a big bag of activities into church for Mass, God knew. If Jacob’s hands were busy, his mouth was not, God knew that too! We’ve experienced the ‘looks’ of judgment for having toys, fidgets and snacks at church, but it sure beats the public meltdown alternative.
Surviving Mass
Some Masses we’d barely sit down. Walking and pacing in the back of church was one way we’d stave off big behaviors. Before Mass we’d hit the playground to use some big muscles until the bells rang, as well as run up and down the entrance stairs or walk around the block.
Scraping Play-Doh off wooden pews, cramming soft Taggies blankets into overstuffed backpacks and collecting coloring books with Crayolas from the bench all took place during the recessional hymn every week. These were challenging days, and my faith was tested many times. Some days, all I could manage prayer-wise was “God help me!”
As Jacob grew bigger and older, the looks became more frequent and more disapproving. Some behaviors are really sweet and cute when a 4-year-old engages in them, but not so cute when a teenager does. My parenting was criticized, yes, right there in church. There were weeks when I would miss church by choice, choosing to protect myself and save my sanity. I know many parents who have made this same decision for the same reasons.
In his message for the International Day of Persons With Disabilities on Dec. 3, 2022, Pope Francis said, “I trust that every Christian community will be open to the presence of our brothers and sisters with disabilities to ensure that they are always welcomed and fully included.”
Inclusion Matters
As a Catholic community we are doing much better. A growing number of churches offer religious education for everyone and varying need levels. Some programs utilize peers to engage young people with intellectual and developmental disabilities, and others use special educators. If we are to build and grow the church of God, much work can be done to meet these great needs.
I’ve seen a young man with cerebral palsy receive his First Communion by communicating with the priest through eye-gaze. Another child with oral tactile defensiveness consumed a small corner of the consecrated Body of Christ when placed under his tongue. It takes patience, acceptance and trust in God for these sacraments to be achieved. It is possible!
Parents raising complicated children, don’t be afraid to lean on God. He knows the steps you take and the fears you hold for the future. He is in the suffering and the surprises, the secrets and the successes. God knows our exhaustion and exclusion. Lean in and ask for grace, patience and endurance.
We are all called to build our lives on a loving and faith-filled foundation. During the 2020 International Day of Persons with Disabilities, Pope Francis said, “Inclusion should be the first ‘rock’ on which we build our house.”
Therefore we need to recognize the image of God inside a non-speaking child with muscular dystrophy and the highly-verbal adult with autism who needs to rock and flap to calm his body.
Our children will have faith that looks different than ours. Some are quiet thinkers, some fidgeters, some are charismatic. It is all okay and all accepted.
(Jenn Lynn is a behaviorist, nonprofit executive and parent of an adult living with Autism+ diagnoses. She is a Secular Franciscan.)
