When I Realized What Made My Son With Down Syndrome Anxious at Church


Every month I drive two hours further upstate to visit my son in his group home. I usually bring him home for the weekend, but some months I can only fit in a day trip.

One weekend, we went to mass at St. Stanislaus Church in Pleasant Valley, New York. I was running late and St. Stanislaus is quite close to the group home. In the back of my mind, I worried about changing Joe’s routine. The staff told me this was where they took Joe to mass when I wasn’t there. “It will be fine,” I told myself, unconvinced. There wasn’t time to drive another ten miles to St. Christopher’s in Red Hook where they’ve known Joe for years and are very welcoming. I don’t know the people at St. Stanislaus.

We sat in front, near the choir. I always tell people my son loves music because he literally grew up in a choir loft. At home, Joe always sits with me in the choir, close to the organist. Music is his favorite part of going to mass. Like many children with Down syndrome and autism, Joe relies on familiar routines to make him feel safe.

He vocalized a lot, his way of telling me something is different. It was obvious to me that Joe wasn’t usually seated in front of the choir at St. Stanislaus. The pastor glanced at us and frowned. I noticed the “crying room,” a glassed off portion where babies cried. Were they bringing Joe there? He was an 18-year-old young man; he didn’t belong in there with the infants.

We got through the mass, with Joe vocalizing every few minutes. I gauged his responses; he wasn’t panicked, just anxious. I knew the best practice was to just keep going. The mass itself is a familiar routine and Joe knows what’s going on there. Nevertheless, I winced at every “aah” he uttered, sure he was distracting others from their prayers.

JoeCU

Joe kept telling me, “I’m not usually sitting here. What’s going on? I’m nervous.”

The pastor certainly didn’t look very happy. Mass ended; Joe and I sat quietly for a minute. The church emptied quickly. A group of people were waiting near the front. Joe and I started to exit the pew. I was mentally planning to guide Joe out the side door, so we could avoid those steep stone steps out front. But the group came up to us, smiling.

“Are you his mom?” one man asked. I nodded.

“Oh, we’re so glad you’re here,” said an older woman.

“We’ve seen your son here before,” an older gentleman told me.

“Staff always brings him to the crying room. But he’s not a baby.” This young man smiled at us.

“What’s your name?” a middle-aged man asked Joe.

I explained Joe was non-verbal but he understood what they were saying.

“We’re glad you’re here, Joe.” A woman smiled at him.

“We’re glad you brought him out here with us. This is where he belongs,” an older couple added.

They were thanking me? What about Joe’s vocalizations? Weren’t they bothered by that?

“Well,” I stammered, surprised, “he loves music.”

“We hope you’ll come back soon.” This woman introduced herself as a special education teacher.

“Yes, please come back soon. God bless you!” A young couple patted my shoulder. Then they all walked off.

I was astonished. Where had these angels come from?

“Joe,” I told my son, “those are smart people. They like you.”

Joe nodded, smiling. He wasn’t anxious any more.

The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. No gesture is too small! If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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