Category Archives: Planning for the future

Spontaneity really is overrated

Way back in my twenties I took a creativity course wherewe ‘practiced’ being spontaneous. And man, did I need practice. I’ve always loved having a plan and a recent conference helped me realize how much Ryan needs one too – and not just at school.

I’ve always known how helpful checklists and plans are for kids on the spectrum, and we often use them to plan unstructured time and to prepare for new events or happenings. But I’ve been reluctant to be too rigorous about everyday use at home – feeling it would be too restrictive and controlling of Ryan’s time and choices.

Then I attended the Autism Awareness Centre’s annual Halifax gathering in April and heard what education expert Catherine Faherty had to say on the subject. Faherty shared an amazing letter she received from one of her adult clients about how his daily checklists are lifesavers for him: how they help him use his time effectively, reduce his anxiety, and support him taking better care of himself.

Well, two days later I was in Staples picking up clipboards and laminate and working on checklists with both of my boys. And guess what? They LOVE them (especially my neurotypical son!). We have morning routine and a bedtime routine complete with boxes to check off when an activity is completed and they both include lots of choice time. We named the lists after their favourite Wii game (The Kirby Morning Routine and the Waddle Dee Bedtime Routine) and they each got to pick their favourite picture off the web to decorate their lists. (That’s what took the most time!)

The lists are helping them track their time better, rather than me nagging them all the time. And they are helping Ryan integrate some important activities into his daily routine without being constantly reminded . Mike went to the conference on the second day and the key message he brought home was about mastering skills – where an activity or behaviour becomes so engrained and known that reminders or prompts are no longer needed.

Ryan made his bed without being asked several times this week and automatically took his dishes to the counter – small, practical achievements that I couldn’t help but see having implications for organizing his time in high school and later on in his life.

The boys even realized that getting dressed before coming downstairs for breakfast means more choice time and less time spent going back upstairs to get dressed later, so we changed our checklists. The boys played for 30 minutes before school and were thrilled, and for the first time in years I got through an entire newspaper – my very own choice time. Like I said, spontaneity is overrrated: Long live the list!

 

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Filed under ASD events, Family, Planning for the future, Social stories

Life planning: Getting by with a little help from our friends

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.

A beacon for Ben's 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.”

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Filed under Planning for the future