Having a Child with Down Syndrome, Part CIX: Performance Anxiety

Copyright © 2016 Stephen Hawley, all rights reserved.

I’ve mentioned this before. Many parents go through anxiety about their child’s performance in events. We silently say the parent’s prayer:

Dear Lord,

Please let it not be my child who eff’s things up.

And if it is my child, please let it be either hilarious or not noticeable.

Your choice.

Alice is active in a local organization of Saints called Whole Children. Whole Children is an organization that was started by moms of kids with disabilities who were looking for programs to enrich the lives of their children, but couldn’t find things that were appropriate. Alice is involved with two programs currently: Joyful Chorus and theater. Today was a performance of Joyful Chorus with a local school chorus and joined by Sarah Lee Guthrie and Johnny Irion. Alice had some issues with another young woman in the chorus, but nothing that was out of the ordinary for the group.


Alice is in there. See if you can spot her. I could hear her singing, clear as a bell and she fit in. It was also nice that the church was absolutely packed with people who had come to hear this performance. Both Sarah Lee and Johnny were professional, kind, and looked happy to be backed up by a group with such vigor.

Here is what was in the program:


Welcome to Everyone Has a Voice

Whole Children’s Joyful Chorus

In Concert with Sarah Lee Guthrie and Johnny Irion

Thank you for joining us for this exciting afternoon of music and friendship.

This concert started as a dream more than a year ago when a group of Whole Children parents and staff were talking about the idea that the disability rights movement was really the last faction of the civil rights movement. People with intellectual disabilities and autism are often invisible in our society, and their human rights are often overlooked as a result.

As often happens at Whole Children, that observation let to brainstorming. How can change this? How can we change the world, even if it’s in just our tiny corner of it here in Pioneer Valley?

We are do fortunate to have Sarah Lee Guthrie and Johnny Irion join us today in out effort to sing out for a country where this land is truly “made for you and me.”

Woody Guthrie was a champion for the little guy, the marginalized, and the disenfranchised – giving voice through his music to those who were otherwise silenced. His wit, humor and homespun lyrics keep him relevant and accessible, even today. These values are clearly embodied in the work of Sarah Lee and Johnny and are a fitting match for our chorus.

Thank you for your support of this musical venture. We hope that this concert serves as a reminder that the whole community is stronger and better off when everyone has a voice.

This project is supported in part by an award from the National Endowment for the Arts.

On a personal note, it was good to hear and wonderful to see Alice participating, but at the same time the current state of politics has affected me so much that I found that my inner joy of music has left me. I need to find a way to get that back.

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