When my oldest son Peter was almost 4 years old, we arrived at Sunday Mass, hurriedly walking in a few minutes late, when he noticed the prayer candles in the back corner of the church. He was mesmerized. He asked, “Mommy, what are those?” As the mother of a child who had been labeled as having a significant delay in the way he was acquiring language, I was happy to hear a non-routine, real question stemming from his curiosity. However, as the mother of a family who was already walking into Mass late, hearing my child talk in an outdoor voice, drawing further attention to our family’s tardiness and increasing our disruptiveness, I was embarrassed.
“Those are prayer candles, Peter,” I said softly. He stared at the flickering votive candles, flames dancing in no particular order, though I could only imagine he was looking for some order to the movement of light as he stared. “Mommy, I’m going to go blow out those candles,” he responded in the most determined manner. Of course, this made perfect sense, as his only point of reference for such things was birthday candles that he always had been encouraged to blow out. However, there was no bone in my body that was going to let him do the same with prayer candles.
“No, Peter, those are not birthday candles, they are prayer candles. People light those in memory of a loved one they are praying for,” I said. “We can’t blow out those candles. Those are people’s prayers.”
Peter was silent for a moment. He then responded, “But I want to blow out those people’s prayers.”
The following Sunday Peter again indicated that he wanted to blow out people’s prayers. I again tried to help him understand that this was completely wrong. The Sunday that followed was the same. Eventually Peter stopped asking me to blow out people’s prayers. However, the phrase remained with me, rattling in my consciousness. In moments of quite prayer, I found myself meditating on the phrase. Is this what Peter was doing, in the best sense of the phrase, for the first few years of his life? Was Peter blowing out my prayers?
I found out I was pregnant with Peter on my 31st birthday. To say I was happy would be a gross understatement. I was amazed. Peter was born full term, with a full head of hair and a sweet smile. One nurse told me he was the cutest baby in the nursery. Of course I agreed.
Peter had a few challenges when he was born. He was never able to nurse, even after we had his frenulum cut. Because of this he struggled to gain weight the first month. He also had a hard time calming down to sleep and demanded to be held during all of his naps until he was almost eight months old. At first I thought I was doing something wrong. Why couldn’t I get my child to sleep? I was reassured, however, when my mother-in-law, a seasoned mother of five, watched Peter for a few hours. After, she exclaimed, “He doesn’t sleep!”
When Peter was 3 months old, my husband came across an article on early signs of autism. He emailed it to me. “Do you think this could apply to Peter?” I read it and went about my day. Peter admittedly did not make great eye contact. But autism? Not Peter. He was the cutest baby in the hospital.
When Peter was 10 months old I found out I was pregnant again. Peter started to acquire language during my pregnancy. He seemed to talk only in questions. It was cute. Since he was my only child, I knew no other way for children to acquire language. I grew accustomed to the way he was talking, and I simply translated everything he said. When he woke up, he would come into my bedroom and say “Are you awake?” as a way of communicating to me that he was. He did the same with food: “Are you hungry?” And with activities: “Do you want to paint?” I knew what he meant to say. Wasn’t that enough?
William was born when Peter was 18 months. Peter wanted nothing to do with William. He seemed unable to share space, almost frightened by William’s movements and sounds. As William grew, we noticed how differently the two were developing. For instance, Peter never crawled appropriately. We thought it was because we had hardwood floors and few carpets, so there was not enough traction to be on his knees. But when William was playing on the same floors, we realized it was not the floors keeping Peter from crawling. It was something else.
I started to do research. A few months after his second birthday, while Peter still wore a bib because he drooled so much, the word autism came across my radar again. I read incessantly any article I could find, sharing each one with my husband. I spoke to both my mother, who works with people with autism, and my husband’s mother, an elementary school teacher. Everyone I spoke to replied the same: “Not Peter. He’s just really smart.”
Peter is really smart. By age 2 he could count to 50, knew all of his letters and had memorized over 50 books. But he never pointed, never requested anything, did not know how to wave hello or goodbye. He didn’t show me toys or engage me in his play. However it was his language that was the most peculiar by far.
One night I found an article in The New York Times written by a college professor about her 2-year-old son who, among other things, talked only in questions. Her son’s diagnosis: autism. I was heartbroken.
I stopped listening to other people and started listening to Peter. A team of educators and therapists evaluated him. Within a few months he received speech and occupational therapy, special educational instruction to develop mature play and social skills and eventually physical therapy. With the help of others, I started to understand Peter and help him move toward a more relational, organized and sensory integrated way of being in the world.
Motherhood and Faith
In times of stress one often turns to faith for guidance. But my connection to organized church was struggling. Peter could not handle the stimulation of church. When it came time for the bells to ring during Mass, Peter would cover his ears and scream. In an attempt to help Peter understand the bells, the pastoral associate let him touch them after Mass. But the next Sunday the fear response was the same. One thing was clear: The bells I heard in my ears were not the same sound Peter was hearing.
So we bought Peter a headset he could wear during Mass. It was not plugged into anything but something to dull the senses. We had many looks of disgust from parishioners who I can only assume thought Peter was listening to an iPhone. But I was not going to let other people’s unawareness keep my family from Mass; Peter’s fear, maybe. One Sunday we were in the car on the way to Mass when Peter started screaming, “Mommy do you have my headset?” On a scale of 1 to 100, his anxiety at that moment was a 99. I was forced to reflect. What was I doing? How is Mass helping Peter? What place of horror and fear is he associating with church? What was he learning about his parents and their ability to keep him safe? What was I really asking of him?
We stopped attending church as a family for about a year. Off and on we would try again. It wasn’t until Peter was 3 that his senses seemed to integrate enough to handle the stimulation at Mass. It wasn’t until he was 3 that we could be at church as a family. When we returned, I experienced church with a new set of eyes: Peter’s.
Faith and Integration
With distance I was able to reflect back on my experience with the church over the year. I wondered, if Peter’s senses never integrated, would I have lost my connection to organized faith altogether? Thankfully for my family, such a question would remain hypothetical. But what about other people’s families who may not have that luxury, too far in the trenches of the reality of raising a child with sensory integration concerns or autism? What becomes of the church for them?
I recognized important, interconnected lessons about normalcy and hospitality over that year. First, I came to realize that when I prayed for my children, often what I was really praying for, and what I hear many other parents praying for as well, is “normalcy.” I, like so many other parents, prayed that my children would be like other children. Even when Peter was labeled at 2 as a child with a disability, I was still praying for him to become nondisabled. Until he did, I thought, we could never fully integrate into the church; for I had believed that the best and most inclusive church experiences were extended to families that were considered “normal.”
I wonder now, is church only for neurotypical families? What is happening to all the non-neurotypical children and families? If autism is diagnosed at a rate of 1 in 88 children, by praying for normalcy, by believing in it, hoping for it, is one setting oneself up to leave the church? For the families who do not leave, is there really a church there to support and integrate their child? Is there a church community that does not pity this child but loves this child with no conditions?
My prayers have changed since raising Peter. I pray now for Peter to flourish and that I will be provided with the eyes, ears and heart to respond to Peter in ways that will help him do so. To do this I recognize I must first love Peter unconditionally, just the way he is. For, in order to truly love someone, does it not demand acceptance and understanding? Otherwise we love not the person, but an imagined figure.
I no longer pray for normalcy. I am starting to believe that praying for and including that term sets up a system that by its nature demands exclusion. Instead I pray that Peter and I will grow more relational. I want Peter to feel love and express love. And I pray that one day Peter and others like him will be met by a living church that meets all with relational community and unconditional love.
I see now why I could not let go of Peter’s phrase. For it was still talking to me. It was helping me to grow in understanding, in faith and in love. I pray now in thanksgiving and in gratitude for the fact that Peter has blown out my old prayers of normalcy and re-ignited them as prayers of relationship and love. And I pray that with education—on autism and sensory integration, on a theology of hospitality and on a perspective of love—others, like myself before them, will find a space in which they feel safe enough to let a little boy blow out their prayers.