For my last entry I posted a beautiful painting from my friend Matthew, a view from our last home before we moved to Hawaii. We lived in an intentional Quaker learning community and farm in Iowa.
Our daughter was just a year and a few months old when we moved to Iowa from Germany. Although born with an extra chromosome, she was alert and curious. She took in and responded to songs, poems, and books in English and German her fathers read to her several times a day. She could do everything most babies do!
The shock of our beautiful baby girl coming into this world with an extra chromosome gave another dimension to the steep learning curve of parenting a first child. We knew finding a great community would give our daughter advantages we might not be able to on our own. It was the main reason we left Germany where Ben and I felt at home in the German language, enjoyed many friendships, but also saw that most people would not consider “the sky’s the limit” for Ellen. Unfortunately, most people in Germany were already placing limits on her, and she was just a baby!
Iowa was different. The sky was as wide and bright as farm fields in summer. Ellen had many fans who encouraged us to set the bar high for our daughter. She had wonderful teachers.
One day I received a request at my job for a tour of the intentional learning community. I spoke to an eloquent, kind, funny woman named Mary on the phone before I started asking questions. She paused. Soon, though, we laughed and realized we were speaking the same language. The tour was for a group of parents of children of all ages with disabilities wanting to ensure that their kids would lead meaningful, sustainable lives as they grew older. The parents’ goal was eventually to build a living/learning/working residential community.
I agreed to set up the tour. I asked a colleague named Mark, who manages the farm at the Quaker day and boarding school, to join me. Mark, one of the finest teachers I have ever met anywhere, immediately said yes.
Mark, in fact, pretty much led the tour. It gave me a chance to watch the parents’ faces grow brighter with hope, to listen to their questions, to watch their reactions as they realized that their dream could be achieved.
At the end of the tour, I brought these amazing parents to our home on the school property that was close to the farm. I introduced them to my daughter who at that time was three years old but starting to speak the two languages that are her first (but not last!).
A few minutes later, I showed the parents the Quaker meeting house and we talked a bit. At the time I did not know my family would be moving to Hawaii, and I wanted to become fast friends with this group of people I had just met. I had trusted them immediately so I allowed myself, knowing they had far more experience with parenting than I, to ask what they thought about Ellen.
I think most parents seek reassurance in some way at one time or another (or more) about what matters in life most: the future of their children. For parents of kids with a “disability,” I have learned that we hold our breath a great deal and hope we don’t come across as needy while we seek to be the best advocates possible for our daughters and sons.
In that Quaker meeting house years ago, one of the fathers looked me in the eye and spoke quickly, decisively, and kindly.
“Look, my friend. Your daughter can do so much. She understands and is speaking two languages. She’s alert. She answers our questions. You’ve got a bright girl. She’s going to be fine.”
But one never knows, and every day you try to give your children skills so they can thrive in small and large ways, so they can transcend expectations, so they can learn the rest of their lives.
But it takes a village, and the wonderful people I met in Iowa began one: http://www.thevillagecommunity.org
Before I started writing this post, I revisited my memories and their website. I was stunned to find my name as one of the individuals who supported them. To my mind, I only did my small part.