For the last two years he has been looking forward to a week-long volunteer workcamp. In 2015 he registered to attend, but the camp was cancelled due to low enrollment. This year he and I and my dad spent a week at Camp Mardela in Maryland, working alongside other participants in this intergenerational activity to get the camp ready for its summer ministry to kids.
Three generations working together |
Ben was in his glory. He helped us split wood.
Ben and his grandpa! |
He raked leaves.
Ben loves to rake leaves! |
He helped clear trails, paint buildings, and deep clean the kitchen. He participated in food preparation and cleanup. He prayed for a meal and read scripture for devotions one evening.
And Ben did what he does best: he made new friends. Ben is more than just outgoing. He is socially uninhibited, a trait consistent with his genetic makeup known as Williams Syndrome.
Ben also got tired and somewhat ornery. By Friday afternoon, the fifth full day of the camp, his self-control was out the window, and my relatively small attempt at setting healthy limits and redirecting Ben quickly devolved into an angry tirade by our usually joy-filled Ben.
Ben's outbursts are not unprecedented. Because the area affected by his genetic deletion typically provides self-regulation, he doesn't have all the tools he needs to use good judgement, make logical decisions, and connect behavior to consequences, especially future outcomes. When he encounters such a situation, sometimes his frustration boils over, and it's not pretty. While not frequent, such violent scenes repeat with periodic regularity.
When his anger peaks, Ben reveals a very colorful and hurtful vocabulary, no doubt picked up in high school hallways. He becomes physically aggressive, kicking, punching, scratching, and throwing anything he can get his hands on. He is strong and persistent. These are scary moments.
As Ben's parent, these tirades can be extremely disconcerting and threatening. The amount of energy required to stick with Ben through one of these instances is immense. On the last day of a physically strenuous workcamp, my energy was already depleted. Since we were at a camp, my strategy to deal with Ben's rising anger was to get him outside and move safely away from him until he could escalate to his breaking point and ultimately return to what typically follows - a contrite, compassionate young man.
There were six other youth ages 13-17 attending the workcamp, five from one youth group and the youngest from another church. At the beginning of the week I had briefly introduced them to Ben's tendencies and spoke about Williams Syndrome. They were friendly and welcoming to Ben, and Ben has never met a human being he didn't want to be friends with!
I was unprepared, however, for the level of maturity and caring from these young people. I know good kids; my wife and I have a teenage son and daughter in addition to Ben. But I also know that kids can be unpredictable. These kids were both those things: good and unpredictable.
As Ben sat alone at a picnic table working through his anger, first one, then another, and then finally the whole group of youth gathered around him and "loved on" him.
I was overcome by tears. These amazing youth surrounded Ben with patient support and caring. In those ten or so beautiful minutes, they demonstrated everything anyone ever needs to know about Christ-like love and compassion. Their simple act of friendship lifted Ben, and broke me.
This is what welcome looks like. This is inclusion. These are simple acts of kindness done toward the least of these. This moment is a human triumph. Here there are no "special needs," only a friend in need.
Thanks, kids, for relieving a weary dad, and for being a friend to Ben! Thanks for sharing the love.
Maybe the rest of us can go and do likewise.
beautifully written. Love you all!
ReplyDeleteThanks, Amber. We love you, too!
DeleteYes, we can imagine only too well how the week went. Many lessons learned. Ben is loved by all.....however.....ask the caregivers how exhausting it is. Prayers for Ben, mother, father, sister and brother. Not everything can be cured with a pill or procedure. Thank you campers for your understanding and help.
ReplyDeleteMoments like the ones described are why my wife, Chief Gieta, loves camp ministry so much. This will not go unnoticed by many... thank you to the Shively clan for participation and leadership in promoting moments like this
ReplyDeleteIt was a great week! Camp Mardela is a beautiful place inhabited by special people.
DeleteWhat a great story. And such a great demonstration of true inclusion, meeting Ben where he was and supporting him.
ReplyDeleteThanks, Michelle! It is hard to communicate how touched I was by the experience. Hopefully each of us has some moment in our lives that we can tell a similar story about.
DeleteI saw your post on Instagram and I wanted to read about it. Ben will always be in my heart, as will everyone in the Camp Mardela Work Camp! Thank you for this touching story. I know I was there, but it's even more special to hear it from someone else's perspective. Just to let you know, working with Ben was the highlight of my week :) I hope to see you, your father, and Ben again someday! God Bless and Have a Wonderful Summer! :)
ReplyDeleteBlessings to you as well, Lisa! It was great to get to know you and the rest of your youth group friends. May your days ahead be filled with joys and challenges which bring out the caring and sharing spirit you share so generously.
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