Last weekend I was honoured to be part of a life planning session for Ben, the 17-year-old son of my friend Louise. Ben has Langer-Giedion syndrome, a rare genetic condition that has affected many aspects of his life. As a result, Ben’s parents brought together some key people in his life to help the family systematically think about, and plan for, his future.
Typically, as kids grow up they rely on various mentors to help them navigate life’s milestones – individuals who come into their lives over time and provide opportunities and advice that help them find their way in the world. In Ben’s case, a group – a Circle of Friends in fact – is being built around him and will grow over time depending on Ben’s own dreams and challenges.
It’s important to identify and involve people who play a special role in our kids’ lives, so that our children have a network of support around them, not just our immediate family.I hope to create a circle like Ben’s for Ryan some day.
Thanks to the wonder of Skype, I was able to participate in Ben’s entire two-hour session, held in his living room in Toronto. Family, friends, neighbours and support workers were all there, and there was real excitement in the room.
Louise and Ben had done some prep work in advance of the meeting, using a tool called Passport. Together they mapped:
- Ben’s attributes, such as I’m happy, I’m a good person…
- His likes: Camp, sailing, fishing, cheeseburgers, donuts, Halloween!
Then we all participated in brainstorming and flipcharting other questions:
- His valued roles: brother, son, a teacher who helps others learn about themselves, a person who brings joy to thers and draws exceptional people to him
- His dreams for the future: Kayaking, riding horses, working at the zoo, have friends
- Supports: various services at home and school
- Barriers: communication and accessibility issues, transportion, money etc.
To end off we listed some initial ideas, action items and timelines. It was a process that was engaging, touching, practical and fun all at the same time. But the best part was the focus on Ben. Louise has often blogged about how Ben can fade away at family functions and other events. His lack of speech and his physical challenges can keep him on the periphery of the action. But not at this planning session.
Saturday was all about Ben. We talked about his special qualities (from his infectious giggle to his bravery in the face of so many therapies and operations), we marvelled at his adventurous streak (ziplining!), and got excited about his dreams (living in his own house, travelling, being a zookeeper).
Soon our minds were humming with possibility and we were primed for action. On our to do list: supper at an Uncle’s house, a sleepover, a play date, potential camp ideas and another meeting of Ben’s new Circle of Friends. Everyone was ready to help. This process made us set dates. It created energy and momentum around acting together and acting now.
My personal highlights were small but powerful…Ben leaning forward to virtually shake my hand and the moment I held up my pen to show I was signing my name to his life plan. It said, “Ben, I’m committed to you now. I’m committed to your dreams. I’m part of your circle.”